I’m starting to hear some horrible stories about issues suspected of being related to hyperthyroidism as a result of elevated levels of iodine from consuming Bonsoy. I’d not have even suspected that hyperthyroidism could cause some of the things I’ve heard. Given how much I read, it makes me wonder how many people have been unknowingly affected by this.
Please, add your story below, even anonymously.
I won’t go into my experiences too much, but basically I’ve experienced:
- Severe weight loss (I usually am about 65kg, and got down to 59kg).
- Heart palpitations and “raciness” – my GP said I was at risk of a heart attack during a small ascent during a race last December; that episode is what triggered me to go to the doctor.
- Irritability – to everyone (sorry ’bout that Kate).
- Sleep deprivation – I’m usually a very sound sleeper.
- Lack of focus at work – I usually have intense focus.
- Constant fatigue and late onset muscle fatigue (after races, or even after riding to work at an easy pace, whereas I never have had that before).
- Inability to maintain my fitness and health through running, cycling and swimming – had to take it easy all summer (and still doing so end March 2010, diagnosed Christmas Eve 2009, but feeling unwell since October or September).
- Inability to train and race (bike races) all summer.
- Constant eating, but craving of poor food (chocolate, chips, other junk food) which led to loss of physique and general well being.
So, how’ve you been affected, if diagnosed with hyperthyroidism, and are able with reasonable confidence to pinpoint it to Bonsoy consumption.
The Bonsoy Debacle 
I started consuming about 300mls of Bonsoy per day in 2008 as part of my transition to a vegan diet. At almost $5 a litre I justified its price on the basis that it was far superior to other soy milks I had tried in terms of taste and consistency. What I wasn’t aware of was just how expensive Bonsoy would be to my health.
During 2009 I started experiencing the following symptoms:
-Rapid heart rate and frighteningly severe heart palpitations
-Dramatic weight loss of about 20kg which resulted in loss of muscle tone and a gaunt appearance
-Increased appetite and sugar cravings
-Light and infrequent menstrual periods
-Feeling hot and flushed with increased sweating
-Headaches and joint aches
-Tiredness and fatigue
-Lack of energy and strength during exercise
-Dry skin and hair that was prone to breaking
-Tremors and trembling hands
-Anxiety, nervousness and mood swings
-Inability to relax, always feeling charged
Initially I assumed that my symptoms were associated iron deficiency but when Bonsoy was recalled and I learned that the excessive iodine levels contribute to thyroid problems everything made sense. A thyroid function test confirmed that I have hyperthyroidism.
Since I stopped drinking Bonsoy my symptoms appear to be diminishing which is reassuring as at 29 years old I would be devastated to learn that I have any permanent damage.
I have heard of others that have suffered significantly as a likely result of Bonsoy consumption and think it is more than reasonable to expect Spiral Foods to acknowledge and accept some responsibilty for the damage caused by excessive iodine in their product.
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Thanks Miv, for sharing your story.
I fear we are going to hear more and more horror stories.
I also appeared gaunt, and had strong sugar cravings. Like a block of Whittakers (admittedly delicious) coconut block.
It will be interesting to see how it plays out.
Tim
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Hi tim and Miv,
I felt really cranky for the last 6 months of last year! Not like me. No libido, hair falling out (thankfully thick hair), menstrual cycle- thought it was an early menopause. Tired, sweaty, joint aches, shaking hands and feelings of nervousness. Went to the GP early Feb as the summer heat was driving me crazy and menstruation stopped and I couldn’t sleep for the heart racing.
I have lost 10kg in less than 2 months. My circulation is shocking at the moment. My heart can’t quite do it’s thing properly. Attempted to come off the heart tabs this week but the heart symptoms are back, so I am back on them. Am gluten free so my diet has gone extra high protein. Meat, eggs, cheese, nuts with lots of leafy salad.
Like Tim, I had an established exercise regime (not as grand as yours but it still existed!) I would swim a half km a day. For over 24 months, if not swimming I would walk or cycle. I am not ready yet to get back to that but have set the goal of an ocean swim next season. Really am quite nervous about exercise at the moment. Although I did a gentle beach walk of about 3km last w/e. Baby steps and listening to yourself. I understand that from hyperthyroid we will go hypothyroid. The hypo period will be interesting.
Like Miv, I would like Spiral foods and the producers of bonsoy to accept some responsibility.
Kath
P.S. I am certain the cause is bonsoy. My blood and urine results were terribly high for iodine and consequent hormone levels. Will post next time.
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I had diagnosed hyperthyroidism during my pregnancies. It’s hard to describe what I felt – but it was like all day morning sickness with the inability to stand upright. I was “speedy” and shaky. It was horrible.
Thankfully hyperthyroidism, as long as it is within certain limits, isn’t harmful to the baby (actually somewhat beneficial for IQ- I was told).
Just before Christmas last year we swapped to a different coffee shop – (great coffee still go there occasionally). I noticed that this shop used bonsoy and was surprised because I knew it was a more “specialist” brand. I had been unwell leading up to Christmas – but got a lot worse over this period – ended up losing 5-6 Kg (I’m not overweight so everyone commented). After I heard about the bonsoy recall it all made sense in terms of my symptoms. Exactly the same as when I was pregnant – couldn’t keep my head up, and as all the symptoms sites say “generally unwell”. Or as my dad calls it “floopy”. I think I had had 3 coffees in total. The shop closed for January and i started to feel better.
Don’t know definitely if I was affected – but the similarity to my previous experience was uncanny!
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Hi Lou,
I am very glad to hear your baby was not affected.
Are you on medication?
Tim
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Hi there
Just thought I’d briefly share my story…
I was diagnosed with “mild Graves disease” in Dec 09 and started on neomercazole at the same time. Before the diagnosis if I had symptoms, I was unaware of them and the diagnosis was made incidently – my GP just had thyroid levels checked as a routine measure. On Christmas Eve I was reading the news online and came across the Bonsoy recall info. I was shocked as I’d been a quite heavy Bonsoy drinker for about 2 years. My children had been consuming even more than me.
Early in January I called the doctor who had prescribed neomercazole and asked him (via a nurse) about the Bonsoy. He seemed disinterested and said that whatever the cause of the Graves disease I must continue on the meds for 12-18mths. This didn’t satisfy me so I got a referral to an endocrinologist. I saw him last week and he is confident (but not 100% sure) that I do NOT have Graves disease but that my hyperthyroid symptoms were due to the Bonsoy. So I have discontinued the medication. I will have my levels checked in a month and I am very much hoping that they will have returned to normal. I should note that if I DO have Graves disease it is unwise to be stopping the medication, so this is a chance I’m taking.
I am angry that this has happened – that I have had the cost, hassle and who-knows-what health effects from too much iodine in the Bonsoy, and perhaps damage from being on thyroid meds when I didn’t need to be. Also, even if I get the all clear in a month, I will still need yearly blood tests, and there will always be a concern in the back of my mind that things are not all well with my thyroid. Finally, I turned down a very wonderful career opportunity which arose around the time of my diagnosis, largely because I was unsure as to the implications of having Graves disease, and the effect the stress from the new job may have on my health.
Despite all this I am not sure about going down a legal path. Bitter experience has shown me that the stress is not worth it.
Thanks for listening!
Stephanie
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Thanks for adding your story, Stephanie.
It would be certainly interesting to hear what a lawyer has to say vis-a-vis the job offer being turned down.
Tim
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Thanks Tim – your forays into legal action has got me thinking…you see it was not a job opportunity I turned down per se, but I was accepted into a postgrad medicine course – something I had worked very hard to achieve. I received my offer at the same time as being diagnosed with Graves. I just didn’t think I could manage all that was involved in taking up the offer of my place in medicine with dealing with my new diagnosis. Also the specialist I had seen at the time strongly suggested that I should not “make any major life changes” in the next 12 months.
Suffice to say I’m devastated about the whole palava…
I am still waiting to see whether I have Graves or whether stopping the Bonsoy was enough to start allowing my thyroid to heal. For now I am off the meds.
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Stephanie, I’d be talking to a lawyer.
As for Graves, my friend’s GP and endo also thought he had Graves as nothing else could explain his ill health.
Since being on Neomercazole, his T4 has come from 5-15 times the normal limit (whilst being very ill), to being normal again, and, after about 18 months, being able to soon start light exercise.
18 months!!
It’s a sad, frustrating situation that a product marketed as being healthy can have made people so sick for so long, and no one be accountable.
Tim
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Thanks Tim – out of interest did your friend end up having Graves confirmed? Was he/she a big Bonsoy drinker?
My understanding is that the Bonsoy produces symptoms which mimick Graves but instead of the symptoms being caused by an autoimmune disease, they are caused by consuming too much iodine.
In other words stopping the iodine/Bonsoy could be enough to reverse symptoms – at least this is what I am hoping.
In other words, while excess iodine can cause hyperthyroidism, it doesn’t cause Graves disease. Is that your understanding too?
thanks
Stephanie
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Stephanie, Graves was not confirmed.
He had been drinking more Bonsoy, for longer, than I had, hence his T4s were very elevated, but, after the last couple of months, having peaked, are now normal. His intake was I think only 1-2 coffees a day – by no means could one reasonably say that constitutes “big”.
Your understanding is the same is mine.
Tim
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Tim – this for me is the issue which remains unsolved and on which so much depends. If I have Graves disease brought about by Bonsoy consumption then I’m really angry. It will be a condition I will have to monitor/treat/be conscious of for the rest of my life. I think legal action in this case is appropriate.
Maybe however I have Graves not brought about by Bonsoy. Obviously if this is true then I have no legal case or cause to be angry. Another option is that I just have a hyperthyroid condition which will heal once the iodine consumption stops. This means I have a temporary condition, which while very inconvenient and which has caused me to turn down a wonderful opportunity, is the best option in terms of my health.
I am not sure even whether a medical practitioner could be certain which of the above options is correct.
I am waiting to quiz my endo before I make any decisions re legal action but as I say, I’m not sure he will really know for sure.
By the way thanks so much for this site and for your quick and helpful replies!
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Stephanie,
Drop me an email.
Tim
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Hi,
I was diagnosed with hyperthyrodism in March 2010. I had been drinking Bonsoy and serving it in my cafe for the last three years before it was recalled. However it was then that I became unwell and was diagnosed. Looking back at the months prior to that I can see that I had symptoms, not sleeping, edgy, lack of concentration and focus, constantly “wired”. However just prior to being diagnosed I lost 4 kilos in two weeks (53k – 49k) not a good look when small anyway. I couldn’t get out of bed, palpitations were so bad I couldn’t wash my hair in the shower without stopping for breath etc. Resting pulse rate was 150. Unfortunately I had an overseas holiday booked to take my 86 year old mother back to her home country Mauritius. Being a tropical island it was hot but swimming or any type of exercise was impossible due to the heart rate. Not the best holiday! My specialist has increased my medication (neomercazole) and I am now starting to feel better although it is patchy. He has predicted 4-6months before I will be well enough to get off the medication.
I run my own business (art gallery) and that has been difficult having time off when first diagnosed and now having to be “together” everyday to keep the business running smoothly. My son is a lawyer and he has made inquiries with lawyer friends who specialise in these types of cases. I am waiting to hear back from them. Shirley
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Thanks Shirley for sharing your story.
Keep us in the loop, I’ll be interested what a lawyer has to say.
Tim
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I had a confirmed thyroid storm and was very unwell. The endocrinologist suggested it was the bonsoy only when he heard about the recall, until then he could not explain why such a healthy person had developed this . I lost all sorts of work as being self employed is hard . I documented my recovery and it was very hard on my family both emotionally and financially.
Dizzy unable to concetrate, could not sleep, porr vision, blood pressure spikes and lows ringing in the ear. I thought about my will and leaving my young children without a father, it was traumatic.
I would like someone to tell me why I have consumed no other soy milk for the 10 years and no one had tested this stuff for the iodine levels. I suspect something went out of wack over the past few years and we saw climbing iodine levels that were never measured. What a horible ride, freezing cold on hot days and other times hot on cold days. Such a bad effect on my health Iwonder if anything was permanently damaged. I worry for my kids as they also consumed it. They seem much healthier off it. Lucky they did not drink as much as me. A noticible improvement as soon as I stopped the bonsoy, I did that before the recall once I new I had a thyroid condition.
What is going to happen are we going to let this go and happy days for Bonsoy again. I am sure I personally have lost more than Spiral foods in the long run.
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Thanks Steve for your story.
I can sense your frustration, and anger, and believe me when I say we all share it – you’re not alone.
I guess the outrageous thing is Spiral hasn’t apologised. It’s all sh!ts and giggles and “Yay, Bonsoy’s back.”
Now they’ve appointed their insurers/lawyers, we can expect an unsympathetic response, I am sure.
Anyway, I should have some news on legal action soon.
In the interim, the best thing you can do is quantify your time off work and medical expenses, and perhaps quantify your lost earnings.
I then highly recommend you call Slater and Gordon, if you want the particular lawyer’s name, email me.
In any case, this sleight won’t be forgotten and will cost Spiral credibility. I’ve had my local coffee shop say “Tim, Bonsoy’s back!”
My response “NO WAY.”
“Why?”
Then I explain what has happened, and they’re shocked.
Tim
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I’ve been reading this website for some time now and would like to add my story. In August last year I started to feel sick. The symptoms became specific in November. I saw my GP who ordered tests. for a while there I thought I had coeliac disease but the test results indicated otherwise. On xmas eve I was driving to work and heard on ABC radio about the Bonsoy recall. I had been consuming 200-250 mls of Bonsoy per day on my breakfast cereal. I have not had Bonsoy since hearing of the recall. Between xmas and new year I had thyroid tests. The results indicated that T3 and T4 were very high and tsh was very low. My symptoms were now very consistent with an over active thyroid. I saw an endocrinologist and the ultrasound of my thyroid indicated that it was enlarged. He diagnosed Graves Disease due to the Bonsoy. I was taking 300mg of PTU per day and inderal to stop the shakes and palpitations. In January and February I went to work but had to take at least two sick days every week. I took all of March off on sick leave. Subsequent tests have shown that urinary iodine levels are falling and that T3 and T4 while still elevated are dropping. The PTU is now back to 200mg per week and I am back at work. Now (May 30 2010) I am feeling almost back to normal. I used Bonsoy as it was supposed to be the best. I am extremely angry about it and want compensation from Spiral. They are insured and at fault so they should pay. Thanks Tim for this website.
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Hi Richard
thanks for sharing your story.
I think you ought to talk to an endocrinologist or your doctor about getting a letter outlining the cause of your thyrotoxicosis.
Then, put together all your costs in a letter of demand, with a copy of the doctor’s letter and send via registered post to Spiral. I’d send it using Aus Post’s delivery confirmation service.
And I’d fax it.
You have a case to claim back ALL of your sick leave and medical costs.
Tim
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Goodness I keep reading more of this site.. this is fantastic Tim that you put this together… I just have to talk to you Tim.. please e mail me as soon as you get this.. I can phone you.. I live in NZ & am a doctor.. Cheers Yashu. PS Obviously for legal reasons I dont want to talk on the net…
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Hi,
Can you please remove my surname from my comments please?
Thanks,
shirley
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I have had symptoms of hyperthyroidism for mnths – stopped the Bonsoy in Dec 2009 when it was recalled but developed severe hyperthyroidism that peaked (in terms of recognisable symptoms and fianlly going to the doctor) in early April – fianlly had an endocrinologist appointemtn todaya and she said most likely cause is bonsoy poisoning! I feel liek I ahve lost 6 months – I have struggled with heaps of symptoms exactly as described by others here and I don’t know how much other peoepel realise how debilitating this is and how much it changes the way you normally live. I feel that I do deserve compensaation when I went on to bonsoy to include a highly recommended health food in my diet and end up in this situation with months of blood tests to go and the potential to flip to hupothyroidism etc.
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Hi all.
Please contact the below person. They are doing preliminary work around prosecuting a class action.
If you do not contact them, there is little prospect of justice being served and you recovering appropriate compensation.
There is no cost for you to do this, it’s preliminary work only. If the case proceeds, it’ll be on a no-win, no-fee basis only.
Tim
Irina Lubomirska
Assistant: Jade Casey
T (03) 9605 2735
F (03) 9258 9610
E jcasey@mauriceblackburn.com.au
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I am in Australia. Mainly have used soy milky, which is vitasoy, but have had bonsoy too. Symptoms: Mainly similar to others here, sorry to say and sorry you each are suffering like me.
Racy, anxious, frequent toileting, like 12 to 15 times a day (way more than I eat it seems!), racing pulse, missing heartbeats, insomniac, dry skin, thinning hair, weight loss despite eating more than enough, have lost 3 kg in the past week. Now am 44 kg. Mostly really hot, but my temperature is weird. I can get really cold when it makes no sense. Can’t think. My brain is so anxious. I had to stop studying this semester. I am trying very hard not to lose weight. Eating raw dates, raw almonds, spelt bread, lots of good veges, grains and bananas. I am having Ensure which is very high calorie food drink used in hospitals and it seems to slow down the weight loss a little. Maybe that is useful to some people here. You can order it through a pharmacy and I suggest the vanilla is easier on the tastebuds. It is non dairy and well balanced.
I have been diagnosed with thyrotoxicosis. Fourteen years ago when I had to stop all dairy products and switched to soy products. I was diagnosed with hyperthyroidism (also a goitre and trembles) within a month. It seemed to be canola oil in some soy milk brands causing the problem, so I switched brands to Bonsoy and Vitasoy.
Improvements happened over the following three years through studiously avoiding canola oil plus stopping my life and doing pranayama and meditation, and extreme avoidance of any stressors dietry wise or people wise. It took three years to get to normal.
Since early to mid June this year I have symptoms again. No goitre, no tremble, but very scary indeed. 29.9 thyroxine in my blood instead of 19! I don’t dare do anything at all. I am spending most of my time resting and need to get back to study and work.
The idea of following through legally is the right thing to do, but I wonder how we prove we had soy milk? We don’t keep all the empty cartons! Also, this condition means that everything seems much more stressful than it is.
I also have a serious problem in that I am unable to take most allpathic treatments without getting severe adverse reactions. The neomercazine side effects would probably do me in if I went onto it. I am wondering if anyone has tried non allopathic treatment for thyrotoxicosis apart from lifestyle adjustment and the things I mentioned?
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Hi Radha, have you been to an endocrinologist or naturopath yet?
As for the legals: well I have here a receipt from one of the coffee shops, plus witness statements.
If you can get your endo to indicate that the illness is linked to an external iodine source, and you’ve been drinking Bonsoy and would swear this in court, I think it would fall on Spiral to prove that you didn’t have it…
If you are interested in the action, you should call the lawyer indicated in the other post immediately as your case sounds very serious.
Tim
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Hi Radha,
I believe some people have opted not to use medication. I think it takes longer to recover, as you stated.
I was in a situation, with my 3 children, that the least time spent incapacitated was preferable to me. I loathed taking the medication but it made my life tolerable. I too am a meditator, which was fascinating (if nothing else) listening to the sound of my heart. I was also given a pressure point on the wrists to press to slow the heart beat. The point is the opposite side to the pulse on the inner wrist, about 1 inch further up the arm toward the elbow. You may feel this as a tender spot in the hollow between tendons. It gave me some limited relief but I also used the medication.
I was put on beta blockers for the racing heart and neomercazole then PTU to reduce the hormone levels. I had an allergic reaction (skin itching and rash) to neomercazole one month after starting it. The same happened with the PTU in a milder fashion and I opted to wait 2 or 3 days and it went away. By that time the medication had done most of its work anyway, it was perhaps another 6 weeks till the medication was gently ceased.
It is important to discuss the treatment options with your endocrinologist and if you see a naturopath try and find someone with endocrine experience, I would seek a reccomendation from the college of naturopaths or you could contact “Nature Care College” or similar….I think endocrinology is such a specialized field whether treated mainstream or wholisticaly…doesn’t matter.
Iodine rich foods include nori , kombu, (seaweed) fish or seafoods, there is added iodine to standard supermarket breads and labelled iodine salt in Australia.
I would have thought that to recover once makes it possible to recover twice from thyrotoxicosis.
Wishing you a speedy recovery!!
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Hi Radha,
I am sorry to hear that you have been suffering so much.
I reacted badly to PTU and Neomercazole wasn’t an option as I am trying to conceive so, with my doctor’s approval, I have been taking a natural supplement called Acetyl L-Carnitine which seems to be helping. I managed to find a vegan version made by Herbs of Gold at my health food store.
There is some info on Acetyl L-Carnitine and hyperthyroidism here:
http://autoimmunedisease.suite101.com/article.cfm/l_carnitine_for_graves__disease
Have you had a blood test for thyroid antibodies? If you have an auto-immune disease such as Graves it may not be as easy to recover without medication and may also explain why you are having this problem a second time. If you haven’t already it is probably worth seeing an endocrinologist because hyperthyroidism, as I am sure you are aware, can be very dangerous if left.
It is scary losing weight so quickly but hopefully it will stabilise once your hyperthyroidism is under control. I made a point of avoiding all foods ciontaining iodine which isn’t hard for vegans but unfortunately includes nori. A lot of soy milks that are fortified with calcium also contain kelp, I know Pure Harvest’s original soy doesn’t so that may be worth a try.
I started to gain weight again once my T3 and T4 returned to the normal range.
Hope you start to feel much better soon,
Miv.
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Hey everyone,
I’m 26 years old. I was a heavy Bonsoy drinker from 2004-2007, ie I had it on my cereal and in cups of chai, consuming 2+ cups per day. I would go through a carton every couple of days, easily. I was diagnosed in either August or September 2007 with hyperthyroidism, confirmed by a blood test. My thyroid hormone levels were so high that the pathology lab faxed the results to my GP on the day they tested them, and the following day I was put on very high doses of Neomercazole and Inderal, for my heart. When I saw the endocrinologist, he supposed I had Graves disease because of my age, but I didn’t test positive to auto-antibodies. I’d have to confirm with him what the prognosis was.
Symptoms: weight loss (I ended up going from about 52kg to 45kg), loss of muscle mass, crippling anxiety, crippling fatigue, heart palpitations that caused chest pains which prevented me from standing for more than 20 seconds, goitre, difficulty sleeping, difficulty performing simple tasks like showering due to fatigue and chest pains, voracious appetite especially for sugar and other ‘bad’ foods, persistent weight loss regardless of what I hate, inability to leave the house by myself (too fatigued to take public transport and I didn’t have my licence), depression and suicide ideation, irregular or absent menstrual periods, muscle pains and crushing headache. I was off work for 6 or 7 months and only began to gain weight and becone able to leave the house by myself in late February/early March 2008. This was an extremely distressing time not only for myself, but for my family and partner who had to support me.
Side-effects of treatment: Fatigue, foggy head, weight gain (15kg of fat, I now weigh 60kg and have a body fat percentage of 36, and still have a very low muscle mass).
I completed about 18 months of drug treatment, seeing the endocrinologist every couple of months, and have been medication-free (but still being monitored) for 12 months. I feel okay now, but the whole experience was the most horrible thing I’ve ever experienced in my life. I’ve also developed a fear of losing weight, so until I am confirmed to be free of thyroid problems (I have another blood test and endocrinologist appointment early next month), I feel unable to try and shift the 15kg of fat I gained.
The details in my story may not be 100% accurate, but I’m going to check all my records, consult with my doctors and put an accurate story together soon.
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Oops, I meant to say ‘what the diagnosis was’, not ‘what the prognosis was’.
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Greetings everyone!
When I heard about the initial recall of Bonsoy, this only affirmed what I already suspected: all my hellish hyperthyroid related health problems were caused by drinking Bonsoy (sometimes a whole carton a day on breakfast, smoothies, in coffee!). I thought it was the best quality, and had a lot of protein, so thought I was increasing my health, not ruining it!
I really sympathise with all of you that have had so many of the same dreadful health problems. Being an Aussie bloke I put off going to the doctor until basically I could barely walk myself there. At the time I got tested for everything from HIV to cancer, as I feared the worst. It was really scary.
When they tested my thyroid levels, he said I should by lying on the floor.
Here are a list of my symptoms I mailed to my doctor at the peak of my health downfall:
* Heart palpitations, feeling like Im going to have a heart attack at any time.
* Terribly hungry, never satisfied
* Anxiety, cranky all the time
* Fever, especially at night
* Muscle aches in legs
* Tendon tightness
* RSI – Hands, arms, toes, neck (tightness, loss of strength)
* Back pain
* Chronic sore throat
* Foul taste in mouth. Floury teeth.
* Bloating, especially after eating
* Poor digestion. Unable to digest high fibre foods or simple sugars
* Chronic Nausea
* Dhiorrea/ Constipation daily
* Frequent wHeadaches
* Chronic thrush
* Bad hangover if consuming just two standard drinks
* Tired, depressed
* Hot feet. Too hot to wear shoes at any time.
* Completely exhausted after 30mins of vigous exercise
It makes me furious that Spiral Foods didn’t test their product for safe levels of iodine, and promoted it as “the best” and as a health food.
They deserve to pay for their negligence by compensating the unfortunate people who have been living in hell as a result!
Sincerely,
Kym
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Just adding my 5 cents worth!
Stopped drinking soy in general around 6 months ago as I was warned it may affect my fertility. At least that is one decision I am happy about.
Prior to this, and before the recall, couldn’t get enough Bonsoy in my coffee and spruiked it’s superiority of taste and quality over other brands to all and sundry. Sadly, I have possibly caused someone else to be affected.
Have just got over crying after the shock of reading this when I remember all the anxiety attacks, hot flushes, increase in headaches, muscle weakness, palpitations, family arguments, relationship issues, the attempt at anti-depressants that didn’t work (funny that) and many situations that may or may not have eventuated had my hormones been normal!
I have felt pretty good lately, Rice Milk is my new best friend!
Good luck everyone, I am waiting for my class action info from MB and need to decide if going ahead with the case.
Michelle 🙂
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Hi everyone,
Its amazing to see that so many people have been through the same thing i went through. I used to drink Bonsoy at my local coffee shop. As it was holidays i was drinking a large ice chocolate daily, sometimes two. Luckily at home i used a different soy milk as i couldnt afford Bonsoy. I started getting very heart racy and tired. I got so skinny but couldn’t eat enough food. At nights i would be waking up with chest pains and having what i thought were very severe panic attacks. I was very edgy. I started to do yoga and started to realise something was very wrong when i would nearly pass out during the meditation. I finally went to a doctor and explained my symptoms. As i had had a history of anxiety, no one really paid much attention. I kept getting told, “oh you are a single parent and full time student, of course your tired and stressed”. I asked for a thyroid test as a natropath 3 months earlier had noticed a thyroid problem with iridology. My tests came back sky high. My doctor was stunned and she actually didnt really know what to do. As it was a friday and i was the last patient she rushed me out and said she would contact an endochronologist the next week but assumed that i had Graves. I went to my parents house for a visit (and they are out of mobile range) and on the saturday my doctors secretary had hunter me down there,( im guessing she went to emergancy contacts) and said i needed medication immediately as i was very sick. I started freaking out and as i was in a rural area with no chemist i asked could it wait till monday. She said NO! I was so upset and it made me realise how serious this was. Anyway long story short once medication began and i got into the endo graves disease was ruled out and bonsoy consumption was the reason. My thyroid is now functioning properly which is good but i still have a heart problem. I am currently undergoing tests to try and figure out what is wrong, but i think it is a result of the hyperthroidism.
My symptoms were:
Hair Loss
Panic attacks (heart palpitation, light headed, cold sweats)
Dramatic weight loss
Unbelievable hunger
Fatigue yet difficulty sleeping
Vague
Sweats and hot flushes
Weakness
Chest pain
Panicky
Stomach problems
If anyone has symptoms and has consumed bonsoy i urge you to go to the doctors. I look back on that time and get very scared when i think about how close i was to having a heart attack. I think about joining the gym and considering doing a cardio class…thank god i didn’t i’d probably be dead! Anyway its so important to get checked out.
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Hello everyone,
I have been reading your stories with great interest and am so glad that a reader of my blog directed me here! I am not alone! I’m in my mid 20’s and have felt incredibly alone for most of this year, after drinking bonsoy for 2 years, average of 2-3 cups per day I fell incredibly sick in March. I could barely get out of bed and eating was difficult, I was very scared that something was seriously wrong with me.
Before getting this sick I had tried to keep working at my new job for months while not feeling quite right. I would be at work feeling lightheaded, exhausted, have to go to the toilet regularly, irritable and sooo anxious.
A couple of times I travelled the 1 hour trip in heavy traffic to work only to find that I couldn’t stand up when I got up the stairs and had to lie down and return home.
I saw a Dr in April who could not work out what was going on, I had tests and an abdominal scan. I returned to my parents home in the country to rest and was so exhausted and scared that my mother took me to the Dr and I began anti-depressants for the treatment of depression and anxiety.
I also began to see a psychologist to deal with the stress and trauma associated with having to leave my job due to the ‘break down’. Many months passed and the awful hyperthyroid symptoms continued, even though my mental and emotional state was quite good. Most significantly I was losing a kg a week. I was then diagnosed with hyperthyroidism and send to an Endocrinologist.
It’s been 7 weeks on neomercazole and I still feel pretty average. I have been staying with my parents the whole time, in the first month I didn’t even have the energy to prepare my own food or do dishes. They have driven me to appointments with a naturopath and acupuncturist. I have told my endo about all the bonsoy I have consumed, I’m not sure he’s too interested in that, he is talking about Grave’s at the moment, but ofcourse nothing has been confirmed about the cause of my condition yet. There’s little doubt in my mind that bonsoy has caused me to become unwell. I had symptoms last year, but they were milder, my partner suggested I might have been affected by Bonsoy but at the time I shrugged it off, thinking ‘I’ll be right’.
I haven’t been right all year, I haven’t been able to work, I have been sick for much of it without knowing why and I have endured depression and anxiety as a result. Getting sick inspired me to write a blog, it tracks my journey. You can find it at http://theansweriswriting.blogspot.com
I am wishing you all well, and I am glad we are all here and can offer support.
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Hi Sarah.
A sad story, and unfortunately, very common.
I strongly recommend you contact Maurice and Blackburn ASAP and relay your story to them.
I’m also curious about why your endo isn’t interested in looking at Bonsoy as the cause of your issues. That’s not to say it couldn’t be Graves, however – the coincidence is too strong for him to just dismiss thyrotoxicosis from Bonsoy out of hand – I’d put pressure on him to check for auto-immune markers via a blood test, get your thyroid scanned, etc etc.
Give the neomercazole time. It took about 5 weeks for it to start bringing my T4 down. Once it started working, T4 came down quickly.’
Tim
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Hi Tim,
Thanks for your response. My endo has had me go to 3 different pathology companies to be tested for auto-immune markers and none of them showed them.
I will be seeing him for the third time next week and we shall see what happens. I found out about the urinary iodine analysis test just this week, so I went to the local GP to have that done, it’s worthwile checking just incase. I’ll have results Monday. My endo said that if my T3 and T4 haven’t come down after 8 wks on the meds that he will order a RAIU Scan of my thyroid to see what the cause of hyperthyroidism is.
I question whether he has diagnosed anyone with hyperthyroidism as a result of bonsoy consumption, because I think if he had he would know more about it and listen more closely to what I had to say. I guess the good thing is that the medication is the same for Grave’s or iodine induced hyperthyroidism, so either way it’s ok. I’m trying to understand from what I’ve been reading whether there’s a link between excess iodine consumption and developing Grave’s or not? From what I can tell they don’t know? Maybe you could clarify for me.
I have the Maurice & Blackburn documents here, as last week before everything came out about the lawsuit a number of things had caused me to seriously believe that I’d become sick from the bonsoy, coincidentally just days after my naturopath had agreed that it was likely my Mum showed me the paper and that there was a case against Spiral.
Thanks also for sharing your good news with the medication, it gives me a healthy sense of hope 🙂
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Hi Sarah,
I was in a similar position as you, it took some time to convince my specialist that it was the Bonsoy, even once my auto immune markers came back negative. He said, in the early stages, that it was most likely Graves or Hashimotos. It wasn’t! Like you, I have no family history.
Reading the medical journal article gives the impression that this is a first time treatment experience for many of the specialists and GPs.
Regarding the link between auto immune thyroid disease and excess iodine consumption, I believe it may speed up the process of becoming symptomatic. It speeds it up because the thyroid is overactive. If you don’t have the antibodies then you don’t have them attacking your thyroid. I also believe they are re thinking risk factors for these diseases and saying that absent family history doesn’t exclude you, but I havn’t seen or heard of this happening to anyone. Hopefully we will continue to see papers on all of this because it seems a big grey area……..
I hope that you continue to stay strong and seek answers. Hopefully you will be feeling a lot better very soon.
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Thanks Kath, I appreciate your sharing. You’re right there is much grey area around the understanding of thyroid conditions and causes. My endocrinologist said he could not tell me whether or not bonsoy could have caused my condition to peak many months after I ceased it’s consumption, but he did say that if I had developed hyperthyroidism 20 years after bonsoy consumption it would be much less likely that the condition could be linked to the milk. So I think in saying that it sounds like he’s telling me it’s quite possible my condition has been caused by Bonsoy. I will press for more info next week. How long did it take you to recover? And about how high were your T3 and T4 initially?
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Hi Sarah,
Some of the issue with excess iodine is that we are usually under iodised and this iodine poisoning has come as a surprise.
Acute symptoms peak so many months after ceasing intake because the iodine has a half life in the body. Iodine is excreted via urine, but that rate has a half life (refer to archives here and this is why urine iodine levels become important). So, in 1 month you will have half as much iodine in you as you had initially and in 2 months you will have a quarter of the initial level (my memory…think it was a 30 day half life…should be mentioned somewhere in the archives here) . The thyroid copes for a period of time then you become symptomatic.
It took me 2 months to become acutely symptomatic after stopping bonsoy.
I forgot to mention that the Dr needs to be aware that it is a notifiable illness through Ozfoodnet part of Gov Health if and when he confirms the cause of your thyrotoxicosis as bonsoy. I know all GPs got an email alert at the time of the recall.
My t3 t4 were btw 45 and 55.
I guess the other suggestion is to contact Tim privately and ask who his endo is and get yr endo to ask about bonsoy thyrotoxicosis….
PS 5 months till I felt better, I do feel my metabolism is a bit faster now, but I feel very good and can do anything I did before. You must be drawing towards the period when you will feel better, am sure your urinary levels will give you a better idea of where you are.
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Thanks Kath, you’re very well informed and arriving here on this website has been so helpful. 5 months on meds til you felt better…I feel the hope 🙂 My endo seemed surprised that my t3 & t4 had slightly worsened during my first month of meds; it made me seriously think…is this graves or not? I can’t wait to be feeling better 🙂
On another note, I have just been reading through people’s stories here and my heart feels like it is breaking. I am so upset at what’s happened, and I know the pain and suffering of becoming so unwell first hand. I just want to wish everyone the very best, and may we all have the strength to deal with our circumstances, to recover fully and experience much needed inner peace during this time also.
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Sarah,
I think you should tell your endo to pull his head in. His attitude (unless he has a good reason for it) makes me very angry.
At the end of the day, you’re a paying customer. And the internet has made commodity medical research a, well, commodity.
The basic knowledge is no longer hidden behind medical degrees.
You ought to advise him of his obligations re: notifying OzFoodNet as well.
Tim
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Thanks Tim, yes I am angry and upset too. I hate being treated like you don’t know what you’re talking about by health professionals. It makes me feel like they think I’m a hyperchondriac or something. The stories I read hear mirror my experience so much that it helps me to feel I am very much right to be questioning things & pushing for my Dr’s to believe excess iodine has likely caused my illness.
I am glad to say I am much more well informed now than I was one or two months ago, this site has helped alot. So I am going to print out some of the information I now have to share with my Endo, surely he will listen to me this time, and if I’m really not happy then I’ll go elsewhere, perhaps even to see your endo. I might even try to e-mail some things through to him so as he can have a look before my appointment.
It’s funny how doctors can make you feel like you have to fit in with them, rather than them perhaps being flexible and working with you. I am glad though that so far I haven’t read that many others have had issues with their doctors about the cause of their condition.
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Angela, I am wondering how your Endo ruled out Grave’s and decided the cause of hyperthyroidism was Bonsoy? Because my endo hasn’t made the call yet.
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My ex girlfriend was very ill for over a year before being diagnosed with Grave’s disease and has since had her thyroid glands removed. She drank bonsoy everyday up to it’s recall. Her condition became very serious and she displayed most of the symptoms listed here. It was a very tough time for her (and for me too). Anyone effected by this has my full support as I’ve seen first hand how terrible it is. Thankyou for making and maintaining this site.
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Thanks John for your comment.
I wonder if she even actually had Graves….it sounds like a few endocrinologists think you have Graves but you end up not having it.
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Hi Sara,
My endo ruled out graves because i had a radioactive iodine uptake scan and it showed that the uptake was considerably reduced which is not typical of graves. The report stated that the hyperthyroidism was likely from iodine ingestion. My endo also did an auto immune test which was fine. Good luck with everything Sara. When i asked my doctor if my hyperthyroidism could be from bonsoy she said definately not, and the results would not be caused from anything other than graves. It is lucky that my endo had a good knowlegde of iodine overload and he had no doubt it was from bonsoy as he had seen many people come through.
Just a quick question for everyone, has anyone been ruled as ok and had a relapse? I went to hospital a week ago with severe heart palpitations and the ecg was ok. I have been having some symptoms return such as poor digestion and bloating and tiredness, although i seem to be putting on weight.
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Thanks for your story, Ange.
This is clearly a BIG wake up call for the health profession.
The AMA (and Food Standards) should be all over this to ensure it does not happen again.
Doctors and endos passing incorrect info should be read the riot act, particularly in the case of a reader whose endo refused to countenance any possibility of Bonsoy causing this.
Tim
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Hi Ange, I was told after coming off medication to watch for any symptons returning and to have my thyroid levels done again should they recurr as well as recommence the medication.
I had several episodes of palpitations but not as severe as the hyperthyroid episode so just lay down when it happened. They were not severe enough to warrant attention.
I think that once our thyroid levels return to normal then you get your female hormones trying to return to their normal cycle, and also the adrenal glands have been on overload . They may explain some of the symptoms you describe however it’s always worth a reassuring trip to the GP to rule out anything else. I always go armed with a list of questions and make sure that I check them off as I ask them.
I also had to withdraw from the inderal very slowly because I was getting awful rebound palpitations as a response to the heart beat having been regulated by the drug. I hope that makes sense.
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Thanks Ange, it’s good to hear that you got the same rhetoric from your doctor that it wouldn’t be Bonsoy. I am soon to have the RAIU Scan, as much as it would have been nice to avoid I know it’s essential to get to the bottom of this.
Sorry to hear you have been unwell again 😦 I hope it’s just very temporary.
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Hey all, I just wanted to ask a question of anyone who has had an iodine urine test. I had one a couple of weeks ago, only to be told by my new endo that I need to do a 24 hour collection, my result from the first test was 318. I had to hassle alot to get the result and a medical receptionist gave it to me, so I am yet to discuss it with my GP. From my understanding this is a high result, but apparently it’s not enough, so we’ll see what the 24hr test shows.
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Hi Sarah,
Why a 24 hr urine?, what will it tell him? Whats he looking for?
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Hi all,
I’m wondering whether a recurrance of symptoms is to be expected with hyperthyroidism? I was diagnosed with thyroitoxicosis in August as a result of drinking bonsoy but although my levels were high they were not exceedingly so. I did not go on medication apart from trying a beta blocker for the symptoms, as my levels were adjusting and were apparently back to normal in September. I have had about 3-4 weeks of vastly improved health which has coincided with my normal blood tests but the past few days have seen a return of the palpitations, sweating and most dreadful of all the chronic headaches. Does anyone else get headaches? I know it’s not a classic hyperthyroid symptom but my endo explained it can be an indirect one. I am a migraine sufferer. If anyone does and they have any suggestions that would be great. I cannot drink coffee anymore or even a drop of alcohol. Anyway, back to my original question – if anyone has experienced their symptoms come back, please let me know. I’m frightened I’m going to have to go through all of this again! Also, what is this urine test? Can it replace a blood test? Zoe
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I don’t know, she told my GP it needed to be 24 hr. Then she got the results from my initial test, which was 318, her receptionist called to say not to bother with the 24hr test. I guess because 318 is sufficiently high? I am seeing her in a fortnight.
I spoke with my GP and she said she didn’t know if 318 was high for an iodine test, so I will wait to talk to the endo.
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Hi Zoe & Sarah, my endocrinolgist’s parting words were that should I have any recurrence of symptoms to go back and have another thyroid function blood test and possibly go back on the medication asap.
I think the normal urinary iodine range is 200 as an upper limit and I was still symptomatic in the 300 range, but less so. The urine test has a direct relationship to how much iodine is in your system.
I found meditation helps with headaches and also some walking or gentle exercise but that depends upon how bad your palpitations are, I wouldn’t be stressing yourself if your symptoms have returned. The understanding I have is that the return doesn’t mean it’s permanent you just need to be treated till it passes. It is possible to have to come off the beta blockers slowly but that depends upon if the returning symptoms were related to having just reduced or come off them, is there a possibility the symptoms are related to the beta blockers? or did you cease them some time ago. Whatever the case its worth booking a visit this week and explaining you have a return of the symptoms over the phone.
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In 2003 shortly after the birth of my son, i went on a “health kick ” involving drinking bonsoy . I got very ill very fast i was hospitalised several times due to heart palpatations, sweats, anxiety depression hair loss weight loss etc. I was placed on serious amount of heart meds as well as thryroxine. My endricologist recommend a full removal of my thyriod or radiotherapy Buti was scared of surgery so i opted for radiotherapy. A week away from my new son my husband and the public saw me a nervous wreck but i ws ment to be ” getting better ” we were told we need to put off having more children due to the radiotherpay for at least 18 months. Several years later i have just got back on track witht the right amounts of medications required.
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In April 2007 I started drinking Bonsoy milk, thinking it would be a good alternative for cows milk which I don’t like. By September, I had begun to feel really ill. I had lost a lot of weight, etc. then one day, I looked in the mirror and my thyroid was showing. I went to the doctor and he confirmed that I had a thyroid problem. I saw an endocrinologist shortly after who said I had Graves disease caused by hyperthyroidism.
From that day, I started a diary of how I felt and coped with it right up till after the operation. This is my blog address: http://hubpages.com/hub/my-diary-about-coping-with-graves-disease
my diary was too long to write here, but thought it might be useful.
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I used to drink Bonsoy every day for years as I have allergies to dairy. I used to be very fit and cycled up to 100 kms per week and did yoga every second or third day. I noticed I had a sever reaction when I drank my coffee in the morning but thought it was just the caffeine, my thyroid would almost be having tremors. I could feel it vibrating in my throat. I had really bad sweat waves and heart palpitations. I lost about 8 kilograms and began to get very irritable, tired, weak and I could not sleep. Eventually I noticed I was loosing my sight and going to the toilet every hour??? I landed up in hospital with hypothyroidism and Type 1 diabetes. I have to inject insulin 8-10 times a day. I am still so week and tired. I can’t work full time anymore. I was studying and had to drop out for a year.
I am sure it was from drinking Bonsoy. I feel my life is ruined….
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All of the above listed symptoms, diagnosed by my endo.. Already type 2 diabetic, and this made me sicker again.. hell year. Is this still a problem with current market bonsoy? Where can I get info on the Class action?
Thanks,
Paul.
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Paul, Bonsoy has apparently been reformulated to omit the source of the iodine.
To join the class action, contact Maurice Blackburn. Read more here: http://thebonsoydebacle.com.au/news/the-bonsoy-class-action-how-to-join/
Tim
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It makes me sad to discover this class action after it’s all over, and that so many others have been affected as I have.
In 2008 I realised something was wrong when I hadn’t slept for at least 3 months. Going to the dr for a checkup before I went on a business trip overseas I discovered I was extremely ill. The lack of sleep and that I’d dropped 12 kg without trying really should have been all the signs I needed.
I was diagnosed with Graves’ disease and thrown on a tonne of medication including a plethora of heart drugs as they were highly concerned I was at risk of heart attack.
My Endo did ensure I ceased consuming soy products from my first consultation. I have been however ignorant of the Bonsoy issue until today.
Over the following months I had all kinds of reactions to the medications I was on, however my thyroid was far from under control. Taking maximum doses of medication to reduce my hormones and protect my heart nothing was taking effect, other than causing me to be even more ill than before. The concern was that the medication was becoming less effective and I was at high risk.
Deteriorating with dramatic side effects of Graves, I couldn’t walk up the single flight of stairs to either my home or my office. Working was almost impossible as I had no concentration. I was eating on average of 10 times a day and continuing to lose weight.
My Endo couldn’t figure out how I’d become so ill so young, at the time I was 35. Graves runs in my family however coming on so young and so intensely was beyond his comprehension. Eventually under direction fom two endo’s I underwent radiation treatment to kill of my thyroid gland.
My body went into shock as a result of so much change so quickly and most of my hair fell out.
Eventually things began to balance out again and with the help of Oroxine my body has mostly stabilised.
I was very ill for a year, and as a result have lost glandular control over my metabolism for the rest of my life.
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Very sad story Verity, I would contact Maurice Blackburn ASAP. The biggest concern I have about this process is there’s been little blanket media coverage of this, so stories like yours are still occurring, even after 5 years. Having said that, I’m astounded a GP or endo didn’t know about the case.
It’s been an abysmal failure by the medical community and also food standards publicising the case.
Tim
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