I didn't have any replies to earlier request for advice today so perhaps no-one has Hashimotos on this forum?
Diagnosed today- 2nd question is what dietary changes are wise and what effect does iodine have- seems to be conflicting advice - particularly re fish so quite unsure here.
Most on here have hashimotos. No action on a diagnosis of hashimotos unless blood tests show your thyroid is struggling. Ie Tsh high. Going gluten free (or grain free) often helps. Personally I’d steer clear of iodine supplements. Specific fish question?
You could start with the website of Isabella Wentz and sign up for her newsletters. You can also use the SEARCH Facility here to find other discussions about Iodine - or any other topic.
Hashimotos is the most common cause of Hypothyroidism globally ...
Hello Rosy,
I've had Hashimotos for almost 30 years now. What I will say is the disease is a bit of a mystery really. We all appear to have slightly different symptoms and different treatments work for different people.
I have found going gluten free made an enormous difference to me as did iodine suppliments I do all I can to support my remaining thyroid function, as soon as I took the first loading dose I knew I'd hit the heath jackpot. Within 20 minutes it was like I woke up.
I also now use a combination of T4/T3 as I had seen my levothyroxine increased to 250 Mcgs daily (I will point out here that I am a 6'4" muscular male) It clearly wasn't effective anymore as a standalone treatment.
These are just my personal observations I get regular bloodwork done privately and closely monitor how I "feel" as apposed to just what the tests say.
This is very much your personal journey and I wish you all the best of luck with it.
Steve.
Thank you Steve. I will start the gluten free way of eating today. I’m unsure about iodine as it seems either too much or too little can worsen things??? I’ve been having fish almost daily ( to keep potassium high fir a cardiac problem) and wonder if I’ve had too much iodine? Could you tell me how you take iodine. I could try and see how it helps.
I take a brand called iordoral. Basically your thyroid requires iodine to function. The problem with just taking t4 is that it requires the thyroid gland to convert it to T3 so that your body can use it. And here is where a lot of people have the issue with solo therapy you're relying on a damaged organ to work. I've been chasing optimal health for about 15 years now.
Things that I've done that have helped me......
Stopped working shifts.
Cut out gluten completely, even a trace amount of Barley gives me a terrible migraine now.
T4/T3 combo.
Temperature monitoring.
Liposomal vitamins.
Paleo style diet (still love Haribo from time to time) haha
Iodine.
Decaf coffee.
Not drinking milk when I take my meds (calcium has an effect on absorbancy of T4/T3).
D3 in the winter or take holidays.
You are the first person that I’ve heard of - that iodine supplementation has proved successful. Mind you I’ve spoken personally to doctors here in the US - and read respected health gurus here in the US and their various newsletters and they all say the same thing (to take iodine - even that iodine will cure Hashimoto’s !). However everyone here on HealthUnlocked almost without exception warns repeatedly and advises not to take iodine. And you say you do have Hashimoto’s.
So curious, to hear how you came to this place of health via iodine. As Rosy points - there is such a gap between theory (as all the Ph.D types espouse) and successful application. I do understand that the thyroid needs iodine. One Dr. casually suggested that many people don’t take the iodine in proper doses or the right kind of iodine. ( and that’s why they’re not successful - like myself for instance). Would you care to share your thoughts and/or experience as to how iodine came to be a part of your successful journey?
Genuinely interested in your successful journey (with iodine) with absolutely zero interest in igniting any kind of controversy.
Thank you for sharing - and so happy to hear of your success!
Hello,
Of course I'll share as I belive sharing is caring.
So my story is simple really. I had started the approved treatment and although I started losing weight slowly I never felt completely well. I had a range of symptoms that were very non specific and I saw many doctors and endos over the years. But they were of the opinion that I was as well as could be expected. In life I am not really one to settle I'd paid to see all the top local people but wasn't getting anywhere, as great as the NHS is it struggles with chronic conditions so you often have to pay. I researched as best I could and eventually discovered the link between gluten and Hashimotos due to leaky gut. And so I implimented that change immediately it wasn't easy for me but I felt it was worth a go. I soon realised I was starting to feel better. My weight was dropping. However, I still felt half dead. Its difficult for me to explain the clammy skin and strange colour to it. I knew there was more I could do.......
I carried on researching and stumbled across information about iodine. I had remembered being told to take kelp tablets when I was diagnosed but I guess somewhere along the journey I'd forgotten.
I researched more into it and found many stories where people had found it helped. I decided that this couldn't go on anymore. By this point my GP had suggested I was suffering from depression. I replied "But I don't feel depressed and have nothing to be depressed about, I have an amazing life" To which he replied "people with depression often don't feel depressed" I left with a prescription for antidepressants. I never cashed it in.
Bla, Bla, Bla I discovered iodine, there was a loading phase to the treatment, 4 tablets daily for a month. I ordered it and started taking them. I'll never forget it, 20 minutes after taking the first dose I was sitting at my breakfast bar looking out over the ocean when suddenly I woke up. I hadn't noticed until it went but it was like there had been white noise in my brain.... Fuzzy thinking I guess. I was instantly a different person, I had my cognition back. I had been a straight A student until Hashimotos hit when I was 14. Then although I was still intelligent I couldn't concentrate at all... My mind would wonder constantly unable to focus, this carried on for many years.
Sorry its long winded but it's as condensed as I could get it.
Oh and I should also point out that towards the end of the loading dose I woke up one morning to find my thyroid gland was bright red and clearly visible through the skin that was a sign of saturation and my signal to lower the dose to maintance levels. I've tried other sources of iodine and they were not as effective for me. But this is just my personal experience
No - but we all have a long story, not all with such a great ending. Not to quiz you endlessly but, did you read somewhere that when the thyroid became bright red you knew it was time to go to the maintenance dose? And is the maintenance dose quite a bit less than the loading dose? I’m assuming it must be. If there is a book or a website or any other sort of resource that I might access here in the US I would so appreciate that information. Congratulations on the discipline it takes to find what works for you and then to stick to it no matter what the “experts” say - and so happy to hear the white noise has left. I too endure this white noise - endlessly for years. I think there’s a genetic connection even because I once had an aunt who told me as a child “ don’t listen to it.” Ha! If it were only that easy. :). Great story!
Hello,
So the data I used originally was based on radioactive poisoning as I was too cheap to pay for the diagnostic tests..... I tend to see how my body is responding to things. Here is some info from the Optimax website
The maintance dose is 12.5mg per day the loading dose was 50mg per day.
Problem with the liquid iodine is the correct dosing and to be perfectly honest it tasted vile haha
Thank youSteve
Quite the resource / website. Agreed on the liquid iodine supplements taste - it is absolutely wretched!
Thanks for the website / resource. The Illinois lab is not too far from where I live.
I've not tried iodine and it is interesting to hear that it works for some - Datis Kharrazian says that iodine stimulates production of TPO, increasing levels of TPO antibodies and should be avoided with Hashi's. He says the recommendations to take mega-doses to quench Hashi's are to shut down production of TPO and inhibit thyroid hormone production, resulting in a less active thyroid and suppressing hyperthyroid symptoms. Best wishes
I guess we are all just different. Not everyone that has Hashimotos gets the white noise or the circadian rhythm problems. My waking temperature was 34.1 oC before I started iodine. Now it's 36.7 oC and I feel great on just 7 hours sleep a day.
Brilliant to know that it could sort out your body temperature - I am permanently freezing, but all sorts of other conditions going on and can't tolerate most medication/supplements. At least I sleep well since taking adrenal support/magnesium. Best wishes
As others have pointed out, most of us here have Hashimoto's as it's the most common cause of hypothyroidism.
I have tried iodine supplements in the past and they made my thyroid swell up and hurt so I now avoid them like the plague. The same goes for kelp.
Unless your thyroid condition is caused by iodine deficiency (which Hashimoto's isn't), I don't see why you would need to supplement iodine. But that's just my own experiences, and it seems iodine works very well for Steve so there really is no "one size fits all" when it comes to thyroid disease.
That’s very helpful Thankyou. I think I will go gluten free and reduce the amount of fish in case the extra fish has been overloading iodine.
Yes, apparently iodine used to be given to SUPPRESS thyroid production in hypERthyroidism. So, unless you live in an iodine low area (rare in the UK) and have been tested as deficient, iodine is likely to make things worse
Thank you. That’s very helpful
Exactly my experience!
Maybe it's because an iodine overdose signals a danger of excess thyroid hormone, so the body overreacts and reduces production. Would be interesting to find out how that works exactly
I would add whilst many swear by being gluten free it made no difference to me. You can only try.
I’ll try it and see if inflammation has reduced when I go for follow up scan in six months. Only diagnosed yesterday so unsure if best route yet
I agree! I went GF and tried GF alternatives...looked and tasted like sawdust to me...no health benefits whatsoever..
Hi. I have changed my diet time and again until I've found my best-fit at thus time. I say "at this time" because in my experience dietary changes are relative to how you respond to them.
Many people including me have found a lot of relief in excluding gluten as much as possible from the diet.
My breakfast is a fruit smoothie with a scoop of collagen powder (as it helps my skin, hair and nails) 2 whole eggs and a small salad of baby spinach, tomatoes, olive and cheese squares. Lunch is gluten free pasta, leguemes, veggies and poultry. Dinner is a smoothie again. My snacks are fruits and nuts.
Try your imagination at different stuff after doing some research online. remember a lot of diets out there may not fit or suit your dietary needs and mire so as we differ in our daily challenges, needs and symptom.
I've been living with this for about 12 years diagnosed and God knows how long before. I'm 44 on Monday and I lift weights to keep the weight and size down. Not saying you have to try it. This is what works for me.
Although I am diagnosed as hypothyroid I have not had a good interaction with iodine and kale.
Make time to sleep at night, I find that melatonin helps if I take it once per week. i use a calcium brand with d3 and magnesium at night. When I use the bath at night I would use the opportunity to take my Eltroxin tablet around 3am. Which gives it enough time to work into my system before taking my other supplements.
Like I said, thus works for me.
I hope this helps.
Might be worth reading 'Why do I still have thyroid symptoms' by Datis Kharrazian. Lots of useful information. In his opinion, supplementing with iodine will exacerbate Hashimoto's.
That’s interesting. Think I will reduce my fish but keep some as dont have salt ( cardiac reasons)
You mean you're on a salt-free diet? That is really not good. The body needs salt - even the heart needs salt. But, especially the adrenals need it, and if your adrenals aren't working properly, that will affect your thyroid and cause all sorts of symptoms.
Sea salt doesn't contain much in the way of iodine, anyway. It's table salt that contains it, and that really isn't recommended. Too many chemicals, and stripped of its natural minerals. But, you should know that you will be getting a certain amount of iodine in your levo/T3, whatever you are taking, which is recycled - 100 mcg T4 contains 65 mcg iodine. You shouldn't need more.
I’ve stopped salt as had unexplained high BP but that’s settled now. I think it’s due to thyroid as can affect BP. I’m not on any thyroid meds yet as have antibodies but other readings are normal. Do you advise sea salt?
I too have found that gluten free and dairy free has helped enormously 😀 I also take selenium 200mg and zinc . Dr Wentz book Hashimotos protocol is excellent 😀
Have to say we'll done Rosy for bringing this up. It's been good to have a conversation about things 👍🏾
Hi Rosy
I have had Hashimotos for 10 years now. Gluten free really helps (ie: fully gluten free...not 95% GF as I was for a long time). Mind you, looking back I think that wheat/gluten were never really good for me. I also don't eat dairy as it upsets my stomach, however I think that could be a me thing rather than a Hashimotos thing.
I tried iodine a few years back after my GP did a blood test and found my levels were low. It didn't agree with me - threw everything off kilter so I stopped taking it.
That’s very helpful. Great to hear what’s helped you.
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