Severe iodine deficiency & Hashimoto's

[Sunny3]

Hi all, I'm still struggling after 3+ horrible years.

I have Hashimoto's and a really bad doctor took me off all meds for 2 years (2019 and 2020) and labs barely stayed in range (TSH around 3.5 (.4 - 4/5), Free T4 around 1 (.8 - 1.7) and Free T3 around 2.8 (2 - 4.4). I literally thought I was going to die most days. I also developed SIBO and extreme histamine intolerance during this time from my body being so slowed down. On May 1 I was trying to pick up some groceries and felt so horrible that I just started sobbing, right there in the store, because I had ALL I could take of feeling so horrible for so long. Had to leave my cart and go home. So, I came home, broke out an old bottle of T3 and took 5 mg and I came back to life. But still FAR from normal or good. THEN just last week a new functional doc who ran another ton of tests found out I am severely iodine deficient (urine test) (results 21 range 100 - 460). So under his care I am taking a tiny dose of iodine he says will help thyroid work better. Question is: can a severe iodine deficiency can make you feel so hypo and will taking some iodine help the thyroid work better? I am still taking the tiny dose of T3 and working on other things (also adrenals out, high homocysteine, high C4a). I would rather try T4, but since the 2 years of torture w no meds I have developed some kind of intolerance to T4 and if I try to take it after about a week my symptoms become so severe I have to stop (head pressure, pains, can "hear" my pulse and feel it in feet and fingertips, extreme fatigue, aches, palpitations, tingling). I'm gluten free and dairy free. Thanks for anyone info on severe iodine deficiency.

[Lizzo30]

People don't get tested for iodine deficiency in UK and presumably US - it is asummed iodine deficiency doesn't exist in the western World -

which is wrong especially as there has been a surge in people turning to a vegan diet ,

a big source of iodine in UK is from white flour baked goods so anyone going gluten free will be missing out on that albeit Levothyroxine contains iodine

I have heard that they are stopping using Lugols iodine to disinfect teats of cows in UK - this is where the iodine from dairy comes

[helvella in reply to Lizzo30]

There hasn't been much mention of iodine in bread here so I checked it up. On this site:

bda.uk.com/resource/iodine....

... it suggests that a single slice of white bread might contain 5 micrograms of iodine. To reach the commonly quoted requirement of 150 micrograms, you would need to consume thirty slices - which is a lot.

They didn't use Lugol's directly as a teat disinfectant - rather a more complex formulation. But yes, usage has dropped. But I think that some work has gone into ensuring the diet of cattle has a reasonable iodine content.

[Lizzo30 in reply to helvella]

All salt in UK used to be fortified with iodine until some NHS doctor in the 1940s decided it was a bad idea and got it stopped however an original one is still for sale in Sainsburys

sainsburys.co.uk/gol-ui/pro...

Lugols iodine was banned in US and also by EU I guess now that we have left EU it might be for sale again idk

grough.co.uk/magazine/2009/...

[helvella in reply to Lizzo30]

All salt in UK used to be fortified with iodine until some NHS doctor in the 1940s decided it was a bad idea

Are you absolutely sure of that? Would appreciate some references to that.

[RedApple in reply to Lizzo30]

'Historic reports of goitre in the UK prompted recommendations in the 1940s by the Medical Research Council that salt should be iodised( 12 , 19 ). However, this recommendation was not followed and it was the adventitious increase in the iodine content of milk that led to the eradication of goitre in the UK( 12 ), rather than a public-health policy that included iodisation of salt.'

cambridge.org/core/journals...

[helvella in reply to RedApple]

Ah! I see this article:

The Lancet

Volume 243, Issue 6282, 22 January 1944, Pages 107-109

ENDEMIC GOITRE IN ENGLAND ARGUMENT FOR PREVENTIVE ACTION: MEMORANDUM OF THE GOITRE SUBCOMMITTEE, MEDICAL RESEARCH COUNCIL

sciencedirect.com/science/a...

Which was during the second world war - somewhat before the NHS existed.

[Lizzo30 in reply to RedApple]

I didn't bookmark the article I read about iodized salt I am quoting what I read however Sainsbury's do sell an iodized salt today that goes back to the 1940s The issue of white flour in UK being a source of iodine has yet to be proven / established - again I didn't bookmark articles I have read on this subject

[RedApple in reply to Lizzo30]

This website is a useful source for info on iodine in the UK ukiodine.org/iodine-in-the-uk/

And yes, Cerebos iodised salt has been around for many decades and is still available. But you have to know about iodine in order to make a conscious decision to purchase and use iodised salt. These days, a large percentage of the population are not iodine aware. Many people will be consuming salt via processed foods such as ready meals, and most commonly crisps, salted nuts etc., which do not typically contain iodised salt.

[Lizzo30 in reply to RedApple]

Iodine seems to be a big nono on TUK but world wide it is the lack of iodine that causes problems esp to children

en.wikipedia.org/wiki/Iodis...

[RedApple in reply to Lizzo30]

Lizzo30, Iodine seems to be a big nono on TUK

On this forum, we do encourage people who think they are iodine deficient to get their iodine level tested, and/or consult a medical professional before supplementing. Iodine is not an innocuous substance and it would be irresponsible to advocate unnecessary supplementation, most especially in the ridiculously high doses that are frequently mentioned.

[Lizzo30 in reply to RedApple]

Do UK GPs test for iodine ?

[humanbean]

If you have a severe deficiency of any essential nutrient it is very important to do what you can to repair that deficiency.

I'm not knowledgeable on how to fix an iodine deficiency (in terms of dosage).

How did you get your iodine level measured, just out of interest? Was it blood? Urine? Did the test require you to take a loading dose of iodine?

[humanbean in reply to humanbean]

Just wanted to add that it would be helpful if you could let us know how you get on with supplementing iodine.

And also, if your test was done privately in the UK can you give us a link to the test, please?

[Sunny3 in reply to humanbean]

Hi Humanbean - a new functional MD/DO is the first doc in 3 years (and I've had over 30 doctors but typically doctors in US don't check for iodine) who ran the 24 hour urine test for iodine and found I'm very deficient. I read this urine test is very accurate. I am gluten free and don't eat fish (don't like it) - and several years ago started buying the Himalayan salt which now I read often does not contain iodine - so there you go! Plus I have SIBO (we believe developed from me being so hypo for so these last several years - and SIBO really causes deficiencies of all sorts). So, it was a 24 hour urine test that showed iodine deficiency.

[Sunny3 in reply to Sunny3]

I'm in the US and evidently most labs here can do this test if requested. Here's one for example: requestatest.com/iodine-24h.... Yes I will post back on this once I figure out if the iodine is going to help. I read that T4 and T3 require an iodine molecule... The function of the thyroid gland is to take iodine, found in many foods, and convert it into thyroid hormones: thyroxine (T4) and triiodothyronine (T3). Thyroid cells are the only cells in the body which can absorb iodine. These cells combine iodine and the amino acid tyrosine to make T3 and T4.

So it makes sense that if I am severely deficient it should help my T4 and T3 production.

[humanbean]

I would rather try T4, but since the 2 years of torture w no meds I have developed some kind of intolerance to T4 and if I try to take it after about a week my symptoms become so severe I have to stop (head pressure, pains, can "hear" my pulse and feel it in feet and fingertips, extreme fatigue, aches, palpitations, tingling).

This was similar to my experience. I was first told my thyroid was "borderline underactive" in about 1990. I got my first prescription for Levo in 2013 ( and the doctor was very reluctant to prescribe even then), and couldn't tolerate it at all. I ended up treating my own thyroid with T3 that I bought online. I tried NDT at the time as well (it also contains T4), but I couldn't tolerate that either.

I spent several years trying my best to optimise various nutrient levels, and trying to repair anything that was within my control that I could afford to test, while also continuing with the T3. I started taking T4 again last year, and for the first time ever I have actually tolerated it.

[greygoose in reply to humanbean]

That's really interesting, HB. I wonder if that's why I can't tolerate T4, as I was undiagnosed for such a long, long time.

[humanbean in reply to greygoose]

I'm sure there must be a connection. Being left under-endowed with T3 for many years is bound to have some very serious effects and cause lots of damage.

Before I started taking any thyroid hormones of any kind I had bouts of severe chest pain, not caused by heart attack (I was checked multiple times and was told I had non-cardiac chest pain and it was implied this was "all in my head" ).

I had to find out for myself that extremely low iron and ferritin can cause chest pain - the NHS doesn't really mention it on their website, and doctors never mentioned it to me. I found out from an American website (possibly drugs.com, but I can't be sure), and by experience of fixing my own iron and ferritin with iron supplementation. I am sure I had hypovolemia as well ( i.e. too little blood) due to a long term GI bleed.

I discovered that Levo made that chest pain more frequent and more painful. When I started taking T3 I got some short-lived relief from the pain, and that was why I went in the direction of T3 only. But I did try Levo every now and then over the following seven years, without success.

Finding that I could finally tolerate T4 last year was wonderful. I still need a small dose of T3 to go with it, and I'm finding that Levo helps me to tolerate T3 as well (I was finding it a struggle which is why I tried T4 again).

But for the moment I'm taking NDT and I can tolerate that too, also for the first time I've tried it and I'm currently using up some old NDT which is still working for me.

Levo on its own doesn't work for me. T3 on its own became less tolerable over time. So finding that I can now tolerate T4 + T3, AND NDT means I now have far more options than I've ever had since I first took thyroid hormones in 2013.

[greygoose in reply to humanbean]

I'm so glad that worked for you. I, too, have tried from time to time to reintroduce T4, but it's never worked. It was always a huge relief to come off it again. But, at least now, I probably know why.

[Sunny3 in reply to humanbean]

Humanbean - I cannot tell you how comforting it is to finally hear there is someone else out there who could not tolerate T4 without bad symptoms starting. I too believe this is connected to being hypo for 2 years (and... to make it worse... before being taken off meds in 2019 and 2020 and being hypo, I was overmedicated pretty bad for 8 months in 2018 - so what a roller coaster and I am sure very damaging to my body). It sounds like you really struggled for a very long time but you finally got it right and I'm very happy for you! And I am so glad to hear you were finally able to take the T4 - last time I tried was probably 6 months ago and within a week those horrible unbearable symptoms started. Finally this new doc suggested T3 alone and, although I am not yet on enough - only taking about 3mg a day - we are going to bump up slow as my system is so sensitive. So it took you about 7 years before you could take the T4, right? I wonder if there are any doctors out there who understand why/how this T4 intolerance happens.

[humanbean in reply to Sunny3]

So it took you about 7 years before you could take the T4, right?

Yes.

During those seven years I dramatically improved several nutrients, including my iron and ferritin which were terrible, although they still aren't perfect by any means.

I also took Holy Basil for a long time to reduce my very high cortisol.

I changed my diet to include more protein, more fat, less carbs (although I still binge on sugar occasionally, which I'm embarrassed about).

Although I mentioned being told that my thyroid was "borderline underactive" in 1990 I'd actually had hypo symptoms since before I went to school. There are plenty of members on here who think they had long-term hypothyroidism long before they were actually diagnosed.

[Sunny3 in reply to humanbean]

I am working on nutrients now and working to take in a little more T3. It is such a mystery why these danged lab ranges are so inadequate for many of us! It is astounding how many doctors say "not thyroid" as we are suffering so badly. Thank you for the response and sharing info - your story really resonates with me as I'm working to recover from such long term hypothyroidism that could have been avoided.

[Lizzo30]

The thing is it took a while for your thyroid health to deteriorate from lack of iodine , there is no quick fix , you have to be patient , t3 will no doubt help but then you have to taper off that and give your thyroid a chance to work on its own with the support of essential nutrients

[hyllet]

i have a goitre endemic i think i I take 50-60 mg Lugols a day, i also having Levo but I understood it eas too little because I gor my Goitre back. alsaao my toung was swollen fore over a year, but with good levels of levo I got my tounge under control, thats why I tink I was under medicated and my poor thyroid gland tried it very best to gain the levels of hormone. It is such a comlicated sytem