Supplement, Iodine advice and more: Hi everyone... - Thyroid UK

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Supplement, Iodine advice and more

Tintin0202 profile image
11 Replies

Hi everyone

Just need a little advice please. I am just not feeling right with headaches in morning, fuzzy head, fatigue and tummy upsets. I am trying to get to the bottom of why I am feeling so low. I came off thyroxine pills last May as I could not tolerate the fillers. After some hassle my GP agreed to put me on to Oral Thyroxine. I started with a low dose as told by GP and gradually increased it to 80mcgs. After blood test in January my GP texted me to lower it to 60mcgs. I did this for a week, started feeling awful and am now on 75mcgs. I am wondering if it is the parabens in the Oral thyroxine that is causing the problem. I seem to be so sensitive to so many additives and preservatives in medication and some foods, so I read ingredients of everything very carefully. I am gluten free and have been for 4 years.

My last blood tests were in January: Serum TSH level 0.05 (0.27-4.20), Serum free T4 22.1 (12-22.00). Serum Folate 22.3 (>4.00), Serum B12 596 (180-1,000). Trying to get an appointment to see the GP is impossible, even a phone appointment takes 2 weeks. I have rather given up with them and have been self-medicating - it does say on label 'patient determined dose". I have just had another TSH test and waiting for the results and will then get private testing for FT3, antibodies, Vitamin D etc.

I take various supplements including Cytoplan (which I know is a reputable company) 50+ multivitamins, which have a high vitamin B content. I think I read somewhere that if you are on Levothyroxine you shouldn't take iodine. These multis have 150ug iodine. Would it be better to take separately a Vitamin B complex (along with Vitamin D, Fish oil, Turmeric and Magnesium that I already take)?

Has anyone read a book by Dr Tom O'Brian called The Autoimmune Fix? It does help to understand autoimmunity and worth reading. His advice is to come off all gluten permanently and try coming off dairy and sugar to see if it helps with leaky gut. He also gives a list of supplements including grass fed cow's Colostrum. Has anyone tried that?

I would be grateful for any input.

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Tintin0202
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SeasideSusie profile image
SeasideSusieRemembering

Tintin0202

I take various supplements including Cytoplan (which I know is a reputable company) 50+ multivitamins, which have a high vitamin B content. I think I read somewhere that if you are on Levothyroxine you shouldn't take iodine. These multis have 150ug iodine.

You shouldn't be taking any supplement containing iodine unless you've tested and found to be deficient. Then iodine should be supplemented under the guidance of an experienced practioner. As iodine solution used to be used to treat over active thyroid before the current radioactive iodine treatment, it can make hypothyroidism worse or even cause hypothyroidism in someone who doesn't already have the condition.

I was consulting with a private practioner a few years ago and she told me to use this same supplement. I told her I'd sent her results of an iodine test which showed I was exactly half way through the range (150 [100-199]) so surely I shouldn't be taking it as it contained iodine. Her reply was that it wont matter. A short time later I retested and my iodine level had shot up to 250 [100-199]. I sacked the practioner and ditched the supplement.

Wait until you have the results of your key nutrients from your private test - Vit D, B12, Folate and Ferritin, post those results (with reference ranges) and members will suggest where you may need to improve levels and what you may need to take.

If you are sensitive to additives and preservatives in medication then you are going to be sensitive to those things in supplements too so you need to choose carefully. Cytoplan state in their Nutritional Information:

Non-Active Ingredients:

Vegetable cellulose (capsule shell)

yet when reading the complete list of ingredients they state:

maltodextrin, ascorbyl palmitate, ascorbic acid, corn starch, sucrose, silicon dioxide, microcrystalline cellulose, MCT oil, HPMC (vegetable cellulose, capsule shell).

Tintin0202 profile image
Tintin0202 in reply to SeasideSusie

Thank you SeasideSusie for your helpful comments. I will ditch the multis - although I thought I had studied all ingredients I did not see that they contain maltodextrin which I think contains gluten. I will post my private blood test results here when I get them.

Partner20 profile image
Partner20 in reply to Tintin0202

FYI, according to Coeliac UK, maltodextrin does not contain gluten, as even when made from wheat, the gluten is processed out.

Tintin0202 profile image
Tintin0202 in reply to Partner20

Thanks for that info. Useful to know.

Partner20 profile image
Partner20 in reply to Tintin0202

You're very welcome.🙂

SlowDragon profile image
SlowDragonAdministrator

Looking at previous post

Your taking liquid levothyroxine

Also gluten intolerant

First

Many people on liquid levothyroxine find it better to split the dose ….taking half waking and half at bedtime

Have you tried this?

When were vitamin D, folate, ferritin and B12 last tested

What vitamin supplements are you currently taking

Would agree with SeasideSusie and avoid iodine

Suggest you get FULL thyroid and vitamin testing done 6-8 weeks after being on constant unchanging dose and brand levothyroxine

Likely to have low Ft3 as you are gluten intolerant

Low Ft3 leads to poor vitamin levels

Poor vitamin levels tend to result in poor conversion of Ft4 to Ft3……then Ft3 drops lower

For full Thyroid evaluation you need TSH, FT4 and FT3 tested.

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Presumably you have autoimmune thyroid disease?

Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis. Both are autoimmune and generally called Hashimoto’s.

In U.K. medics never call it Hashimoto’s, just autoimmune thyroid disease (and they usually ignore the autoimmune aspect)

Recommended on here that all thyroid blood tests early morning, ideally before 9am and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

Some recent research suggests we develop food intolerances because Ft3 is low

Tintin0202 profile image
Tintin0202 in reply to SlowDragon

Thank you for all your help. I will split the thyroxine dose. Vitamins were tested in November. But only Folate and B12, so will get others done privately along with full Thyroid test. Yes I was diagnosed with Hashimoto's.

Lalatoot profile image
Lalatoot

It was very similar 50+ vitamins that tipped my struggling thyroid over the edge. The endo assumed that it was the iodine as there was no other reason for my thyroid problems.All the supplements you take have fillers so some of them may be causing problems too.

To guide yourself back to wellness you need to ensure that your vit D, folate and ferritin are also at levels well up in their ranges. You need also to know your levels for TSH, ft4 and Ft3 taken from the same blood draw. Then you will be able to see if you are converting T4 to T3 adequately and if you have high enough vitamin levels to ensure that efficient use is being made of those thyroid hormones.

greygoose profile image
greygoose

I came off thyroxine pills last May as I could not tolerate the fillers. After some hassle my GP agreed to put me on to Oral Thyroxine.

I'm rather confused by this. Do you mean he put you on liquid thyroxine? Because taking pills is oral - there's no other way of taking them. :)

I am wondering if it is the parabens in the Oral thyroxine that is causing the problem.

Are there really parabens in what you're taking? I know they can make you put on weight, but I've never heard of them making people feel bad. You haven't had your FT3 tested. Just testing TSH and FT4 cannot tell you the level of your FT3, the active hormone. So, it could be low T3 that is making you feel bad. Your FT4 is high, but that doesn't mean your FT3 is also, you could be a poor converter.

Multi-vits are always, always a very bad idea, for many reasons, no matter who makes them. :)

Tintin0202 profile image
Tintin0202 in reply to greygoose

Thank you so much for your reply. Perhaps I should have said I am taking Levothyroxine Oral Solution. The inactive ingredients are : glycerol, citric acid anhydrous, sodium methyl parahydroxybenzoate (E219) and purified water. Think I will target the vitamins I need and give up the multi vits.

greygoose profile image
greygoose in reply to Tintin0202

I think that would be a good idea, yes. :)

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