Should I supplement iodine?: Morning, I have... - Thyroid UK

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Should I supplement iodine?

kaju20 profile image

Morning, I have hashimotos which I seem for the most past to keep the antibodies down. I'm very symptomatic for low thyroid function but still fighting to get some kind of help medication wise. I've got a goiter, or large cyst that's growing considerably fast. Probably about 3 to 4 cm in the last year. I've read so much conflicting information on supplementing with iodine. How would I know if I should try supplementing to see if it decreases the size of the cyst? Should I test for iodine? Or is it to be strictly avoided with autoimmune?

I have had 2 ultrasound scans which they say the cyst is benign by the way.

Many thanks for any Pearl's of wisdom :)

37 Replies

I hope greygoose will chime in as she has written extensibly about this in the past.Iodine should not be taken unless you have a diagnosed deficiency. It is rarely the cause of hypothyroidism in industralized countries.

PurpleCat71 is perfectly right. The cause of your hypothyroidism is autoimmune. Taking iodine will just exacerbate your disease.

Iodine is not some magic potion that makes your thyroid work better, like some people seem to think, it is just one ingredient of thyroid hormone. So, just as you can't make a cake with flour alone, you can't make thyroid hormone out of just iodine. And excess iodine can be dangerous and cause problems like thyroid cancer.

You will be getting iodine, anyway, from your thyroid hormone replacement. 100 mcg levo contains approx. 65 mcg iodine, which is recycled in the body. Plus the iodine you're getting from your food. I doubt if you need any more on top. :)

kaju20 profile image
kaju20 in reply to greygoose

Thankyou, I understand this but like I say I'm no no medication, so I wont get it that way and I dont believe I get it through my diet. I've done extensive research on autoimmune, I fully appreciate iodine does not cause hypothyroidism but I just read which is not the first time that the goiter can enlarge through not getting any iodine. So the question was more does anyone think in my case could it be a lack of iodine and how would I go about testing it to see if I am deficient just to rule that out? I'm just trying to rule out every possible reason this goiter is growing at a pace as ENT want to cut it out along with half of my thyroid without any support for my thyroid function. I'm not on medication because of the "politics" involved in giving me medication is what they have told me :(

SeasideSusie profile image
SeasideSusieAdministrator in reply to kaju20

kaju20

Test.

Do a non-loading test (ie a test that does not require you to take iodine before the test). Genova Diagnostics offer this test, details here:

thyroiduk.org/help-and-supp...

Click on the list of "available tests" and from the pdf you will see on page 3:

Urine Iodine Test:

Specimen requirements: Urine

Cost: £71.00

Order Code: END25

Turnaround time: 5 - 10 days

Iodine is an essential trace element, vital for healthy thyroid function. Adequate levels are required to enable the production of T3 and T4 thyroid hormones, whilst also being required in other areas of health. Deficiencies can lead to impaired heat and energy production, mental function and slow metabolism. Urine iodine is one of the best measures of iodine status. This test is not performed as a loading test, but can be used to establish existing levels or to monitor iodine supplementation.

kaju20 profile image
kaju20 in reply to SeasideSusie

Thankyou so much, I'll look that up. Great to understand the type of test to take also. That's very useful thankyou :)

greygoose profile image
greygoose in reply to kaju20

Ahhh I see. Yes, you're right, a goitre can be due to the thyroid expanding its surface in order to 'catch' more iodine. But, just having Hashi's itself can cause a goitre. There are two types of Autoimmune Thyroiditis. One is Hashimoto's, which comes with a goitre. The other is Ord's, which doesn't have a goitre.

But, then again, you say 'a goitre' or 'a large cyst'. Not the same thing. I don't think cysts are caused by low iodine. So, taking iodine wouldn't get rid of it.

kaju20 profile image
kaju20 in reply to greygoose

Ahh, that's interesting, so maybe that's what I need to clarify at my next appointment with ENT. Is it a cyst or a goiter. In that case it will rule out the growth being down to lack of iodine. Thankyou, very useful :)

greygoose profile image
greygoose in reply to kaju20

You're welcome. :)

kaju40,

I’ve just done a urine iodine test via Biolab. It was about £45.

biolab.co.uk/index.php/cmsi...

There’s not much on their page but I was slightly deficient but not enough to require supplementation. That was the conclusion I was given.. You do receive some dietary iodine if you eat fish and drink milk.

Thanks for that! What type of fish? I dont eat much fish at all and I sparingly have cows milk. Would goats milk contain iodine?

Yes all kinds of fish contains iodine:

ods.od.nih.gov/factsheets/I...

I don’t know about goat’s milk and it’s iodine content but you may be able to find out online.

Great thankyou. Fortunately tuna is one of the fish I eat. I know theres alot to say not to have iodine but i really dont believe i get much at all. It might be worth doing the test to get a good idea. Thanks for that :)

If you do test and find yourself very low then you’ll need the help of an experienced practitioner who can guide you through supplementing. However, always get your nutrients through diet first. They are far more bioavailable and safer. Although supplements can fill any voids more quickly.

From all the posts I have read on here over the years I suggest you do not agree to having your thyroid removed

kaju20 profile image
kaju20 in reply to Lizzo30

Im only 34 and its huge, im trying hard not to be vain about it but its really knocking my confidence together with my hair falling out in clumps, fortunately my adult acne has calmed down alot but its growing still and now people are commenting on it as its grown so big :(

kaju20 profile image
kaju20 in reply to Lizzo30

Not to mention the discomfort also. Swallowing, voice change, constantly clearing my throat... if there was some way to get the cyst to shrink even just a cm I think I could put up with how it looks. They say theyd only take half the thyroid but the surgeon said he doesnt know if it would start growing the other side later

Lizzo30 profile image
Lizzo30 in reply to kaju20

I dont think that is a common symptom of hashimotos? - I hope readers will correct me if I am wrong . I have seen that as a symptom of low iodine You are in a tricky situation and I am not advising you this really must be your decision

Lizzo30 profile image
Lizzo30 in reply to kaju20

Whats your diet like ?

kaju20 profile image
kaju20 in reply to Lizzo30

I was in a terrible state a year ago. Allergic, or what seemed allergic reactions to everything... literally, skin flare ups, terrible acne, went to A&E with gallbladder pain, constant migraines, weird spasms, heart palpitations... the GP was taking every symptom isolated so I did a complete overhaul. I've always eaten very healthy, treat myself now and again, but was never for pasta, potatoes, never processed food, cook from fresh always... but I went on a detox course, a very in depth one. Came off all meats, eggs, dairy, gluten, sugar, coffee. Only steamed my veg, only fats were coconut oil and avocado oil.... did that for a few months but read Isabella wentz and was researching autoimmune... came to the conclusion I needed the aminos I meat but the hormones concerned me... so I then bought organic meats and had those a couple times a week. Slowly I've introduced eggs, occasional dairy, a naughty here and there chocolate, odd coffee. I discovered veg oils, nuts and seeds are the worst for flare ups in the autoimmune department so I stay away from those. So now, I supplement on the key nutrients that the thyroid has difficulty keeping up and stick mostly to an AIP diet. Gluten I will never return to! So now mostly veg, I eat more fruit than I should I know, and any naughty odd piece of cheese or milk will always be organic... night shades I avoid too, they flare up my joint pain... I know everyone says they eat well but that's something I have always been very careful of

Lizzo30 profile image
Lizzo30 in reply to kaju20

I think meat dairy and eggs are good for thyroid if you can eat them

kaju20 profile image
kaju20 in reply to Lizzo30

I definitely feel stronger for having meat. Eggs I dont have any apparent side effects. Dairy I think I'll try leave out for a while. It's just all the hormones they pump these animals with that transfers to us I'm concerned about IF my root cause has something to do with estrogen dominance. I was just reading up an article about possible causes for thyroid cysts/nodules. I think it's going to take some time to go the natural route but I do agree that getting the nodule removed through surgery should be a last resort. I'm going to try the paleo autoimmune diet but be serious for a minimum of 6 months. Thanks for your interest. You've really made me rethink, I can do better diet wise, maybe when I was super strict I was on my way but I've slowed things down a bit because I made improvements I'm creeping back into old habits. It's worth a try to avoid surgery... the NHS are under so much strain that it would take that long maybe to get help so while I wait I can try this again... thankyou for your help

Do you have any blood test results to show us? If you have an under active thyroid then taking thyroxine may well shrink your goitre, if that is what you have.

I had a very noticeable multi modular goitre and was eventually sent to see a senior endocrinological consultant in Birmingham. She prescribed levothyroxine but nothing else. She told me that this would not shrink the goitre but it did. Very rapidly. No trace of it within months. I’ve always been puzzled that she would say such a thing but I have learnt through years of reading posts here that endos often say and do strange and uninformed things.

I wonder why you’re not on medication. You could consider having a full test from a private firm like Medichecks. This you would need to do fasted early in the morning. You say that you’re symptomatic but don’t mention any test results. I think medication may well solve your problem without surgery.

,

kaju20 profile image
kaju20 in reply to Bertwills

I've just learned that goiter is different to a cyst or nodule on the thyroid? I was living in hope that going on medication would potentially shrink it but the ultrasound nurse referred to it as a cyst. I'm seeing the ENT surgeon again this week. I think I'll ask for a new scan (last done in april) and clarification if it's the one, what exactly it is. I've had a couple of medicheck full thyroid panels as rarely does the GP see the need to test T3. I have a little graph I printed up to show my levels over time as I had blood tests. I'll take a photo of it.

I'm not medicated because I've never got past the GP. They isolate symptoms, no one will unify them or acknowledge I have a thyroid issue

I'll attach a photo, thankyou

kaju20 profile image
kaju20 in reply to Bertwills

My letter from the ultrasound said its a thyroid nodule I have. If that makes a difference as to how medication might influence it?

TSH, T3 and T4
Bertwills profile image
Bertwills in reply to kaju20

Hi, mine was described as multi nodular so I think I had more than one nodule.

I can see from your results that all your readings are low. The photo’s a bit tricky to read. I think you may have central hypothyroidism. Just a guess! Maybe post again with your results to ask for help here.

I’d copy them out as the photo is not clear. If you have ferritin etc results too include them. The ranges are vital.

I also can see why you have not had medication yet but central hypothyroidism is a distinct form of hypothyroidism.

Hopefully someone with expertise will notice your post.

kaju20 profile image
kaju20 in reply to Bertwills

That's exactly my guess! But as I understand, central thyroidism is harder to find someone to diagnose :( one GP said I have an overactive thyroid as she based it only on low TSH. That's why it's so important to get the T3 tested too. It's all in the bottom range, but still within range so I feel like I wont get medicated any time soon. Problem is I'm very symptomatic. My ferritin level has always been very low but despite my best efforts I cant get it up. I've read that it works together with the T3, so I need to improve my thyroid function to have a chance at getting ferritin levels up. The GP always comments that I'm naturally low, its genetic whenever I question about my ferritin levels. The range is 23-300 and I've been between 34-51 in the last year. But at the end of the day if it is central thyroidism increasing my iron levels isnt going to improve my thyroid function I doubt. Ive worked and improved my D, B's, omegas etc and felt some improvement with energy but i think this all goes deeper than increasing iron?

thyr01d profile image
thyr01d in reply to kaju20

Hi Kaju20, just replying because you and I have reached opposite conclusions. (Btw iodine made me worse I think). I am prescribed T3 (don't convert T4 to T3 well) but my endocrinologist thinks that my ferritin, which is needed for that conversion, being right at the bottom of the range is why I don't feel the improvement others feel when properly medicated. He talked about a blood transfusion but then we hoped that on continued T3 my absorption would improve and ferritin would rise and I'd feel better. Like the endo I think my problem is the ferritin and I think yours might be too. I'm vegan and have not been able to get the level up even with prescribed ferrous fumarate. You though are not vegan, so what about focusing more on giving your body more rather than denying it? I see that you have tremendous will power when it comes to cutting foods out, but your body may not be getting all that it needs, so for instance how about giving your body liver etc to naturally bring up your ferritin levels to see if that makes you well?

kaju20 profile image
kaju20 in reply to thyr01d

Loved your reply! Thankyou so much for messaging! I'll do that! The best result in increasing my iron was with a natural derived liver supplement, ancestral supplements. They're ground up beef liver... pricey but they did budge it. I assume because they absorb better. I stopped taking them because I had a suspicion I was overdosing on vitamin A, as I eat alot of sweet potato and veg etc with A. My fingers started peeling... so then i switched to their beef spleen but only took them for a month because they are pricey but saves the faff of cooking up iron rich meat so I guess it's not bad value. I was debating whether to go back to them. I think you're right. I should work harder on my iron! So practical and encouraging your message thankyou so much!

radd profile image
radd in reply to kaju20

kaju20,

You need adequate thyroid hormone levels for good gut absorption of iron and adequate iron levels for good thyroid function, particular T3. You are low in both iron & thyroid hormones.

As you are not medicating any thyroid hormone replacement meds, your low TSH indicates Central Hypothyroidism. This means the problem lies with either the hypothalamus or pituitary gland and it is a thyroid problem only in the secondary sense.

However, thyroid nodules are solid or soft lumps or cysts. They can be caused by a tissue overgrowth, fluid filled cavities and loads more reasons. How they are exactly termed remains ambiguous as there are different definitions depending on what you read but the biggest cause is Hashi inflammation. You say you've had a positive Hashi diagnosis. Hashi is a progressive condition and your presentation and immune reactions sound classic of Hashi, ie swollen thyroid gland, intolerance of nightshades, gallbladder pain, etc.

Your detox sounds great has appears to have reduced inflammatory reactions enough to allow an introduction of a more 'normal' diet but I am horrified your ENT surgeon has considered removing half of your thyroid gland as your cyst is benign. You need to be on Levothyroxine to replace missing thyroid hormones, particularly T3, and addressing iron & nutrient deficiencies. Hashi inflammation will often reduce once thyroid hormones are optimised because it reduces activity within the gland.

Ask your GP why TSH is so low when you have low T3 levels and a Hashi diagnosis, and if he can't prescribe Levothyroxine that you would like a referral to an endocrinologist for suspected Cental Hypthyroidism, and not an ENT surgeon who is threatening to cut half of your thyroid gland out!

kaju20 profile image
kaju20 in reply to radd

Your message was perfect! Summarised and clarified everything thankyou so much! I asked the ENT surgeon if before I made my decision I could see an endocrinologist. As you know it could go 2 ways, completely dismissed and back to battling with the GP or further investigation... I'm not so sure theyd medicate me as I'm not out of range enough do you think? The only doctor who recognised and confirmed it was hashi based on my antibody results was an immunologist (if that's what you call them) that I paid private. One GP acknowledged my antibodies, when I asked for a second blood test months later to monitor the antibodies she refused saying theres no point. I just wanted a rough idea to know if my diet changes were keeping them at a low.

So until... and maybe I wont get medicated... who knows. Should I try work on my iron anyway? Work on my gut for max absorption?

radd profile image
radd in reply to kaju20

kaju20,

I have been looking at your previous posts - what a debacle with no-one owning your problem. You look as if you are stuck in a no-mans land.

From what I can gauge you were put under ENT care for lump investigations but in spite of a benign diagnosis, because it keeps growing they are keeping you on their books so to speak. However, all the while you are there it will be difficult to get endocrinology treatment because endocrinology are waiting for your investigations to be concluded, and one specialist doesn’t like to tread on another’s toes. Meanwhile your GP knows nothing or pretends to, and all this has been going on for about 3 years!

You could insist on an FNA or else be transferred to endocrinology, but then replacement meds risk not being easily prescribed due to the possible Central Hypothyroidism.

All recent TFT’s have showed TSH low or below range, FT4 38% through range, and FT3 as 0% or below range. You must be feeling terrible and this is a classic cause of a lump (whether the radiologist refers to it as a goitre, lump, nodule or cyst) enlarging in an attempt to trap more iodine. Remember your TSH is low so the lump isn’t necessarily a result of your body being iodine deficient but your thyroid gland is. This would be replenished if Levothyroxine (that contains iodine) was optimised and hopefully lump would shrink.

You appear mindful how you feel and are able to control Hashi (to an extent) through diet & optimising iron/nutrients and so if this were me I would be familiarising myself further with thyroid physiology & Hashi protocols, ie read Isabella Wentz’s book ‘The Root Cause’ + Dr Peatfields book ‘Your Thyroid & How To Keep It Healthy’, and self medicate Levothyroxine.

However, be aware meds can be hard to source and not always as they seem but members share suppliers they have received good experiences with. Also, once you self-medicate you may never get a diagnosis as all future TFT’s should show adequate thyroid hormone levels. Also, if lump didn’t reduce and/or became further problematic further investigations would be essential and you would have to come clean about administering self-sourced Levothyroxine.

Another option if funds allowed would be to seek out a functional endocrinologist who holds understanding of Hashi & believes central hypothyroidism exists. They would also be able to investigate your adult acne which is usually down to excess testosterone, as this would be another cause of inducing hypothyroidism by binding too much thyroid hormone and inhibiting enough ‘free’ to be utilised.

What I wouldn’t do is supplement iodine without a loading test and even if proven deficient, only taken under specialist guidance as if administered incorrectly, (ie not in line with selenium) you could make your thyroid issues even worse.

kaju20 profile image
kaju20 in reply to radd

You've really hit the nail on the head. Theres alot of great points you've made there. Lots of avenues I've considered but hadnt thought of the potential consequences like for example while awaiting further investigation of central thyroidism IF they decide to look that side of things. The self medicating like you say would also hinder further investigation if I got my levels optimal.

What do you think then? Based on my thyroid function results, if the endocrinologist agrees to trial me on medication, would it be only levothyroxine I would need? Should I not push the central thyroidism, do the trial, get under their care before questioning it further? Or is it best to put it out there from them beginning?

I was thinking of pushing it if they lot at my results and say everything is good, be on your way... then I think I'll push for further investigation.

If they discharge me, should I just ask ENT to keep me on incase it continues growing? Seems to me they so far are the only reason I'm getting an appointment with endocrinology. If I have to go back to the GP I'm done for. They have "chronic fatigue" written in my notes and always go back to that. Nothing wrong it's just chronic fatigue.

I totally agree with the iodine advise. I wouldnt feel right taking it without at least testing first and even then from what I've learned it goes hand in hand with selenium... which by the way I've been taking for months now. Does that cause problems?

I have Isabellas books, the other Dr you mentioned I havent come across yet so I'll do that. Knowledge is power. So not to loose despair I'll keep educating myself so I can make wise choices to not make things worse and not loose my mind.

I also wondered about a hormone test. I hadny thought of testosterone dominance, I was looking down the estrogen dominance line. I was considering next asking for hormone tests from the GP if I get no where with endocrinology and say goodbye to ENT...

It's making as many "escape plans" as possible so that I have some kind of direction and I'm fearing the worst. That theyll just dismiss everything

radd profile image
radd in reply to kaju20

kaju20,

Unmedicated. Last TFT’s in August.

TSH 0.31 - (0.35 - 3.5). under-range

FT4 12.7 - (7.5 - 21.1). 38% through range.

FT3 3.8 (3.8 - 6.0). 0% through range.

You have Hashi with Central Hypothyroidism, and a lump that has been confirmed as benign. I have advised that in your circumstance with totally inadequate FT4 levels, under-range FT3 levels, coupled with low TSH (which has obviously thrown them & risks continuing to do so), experiencing debilitating hypothyroid symptoms that are progressively worsening, I would be self-medicating Levothyroxine.

Whether you self-medicate now or wait for a possible unnecessary partial thyroidectomy, the treatment would end the same and that is Levothyroxine to replace missing thyroid hormones. And replacing missing hormones now stands a strong chance of reducing the need for a partial thyroidectomy by reducing thyroid activity, Hashi inflammation and so hopefully the lump.

It doesn’t matter that taking Levo risks skewing later investigations because should eliminate the need for any, as what would they be investigating if thyroid hormones are optimised? And should lump not reduce &/or require further investigation, you just fess up to taking self-sourced Levo. So what!? You have only medicated what they should have already prescribed and are going to have to eventually anyway.

Your deficient thyroid hormone levels will be evidenced on your medical record, and you will only be replacing missing hormones with medication the NHS would recommend for hypothyroidism. Just because even after three years they haven’t got around to recognising you as hypothyroid it doesn’t mean you have no need for these meds. Their diagnosis of 'chronic fatigue' is appalling when hypothyroidism complete with symptoms & under-range FT3 levels are staring them in the face!

And yes, you would only need Levothyroxine at the moment, and because you are so deficient you would need to raise Levo slowly and support the adrenal glands to keep up with the increasing metabolism. Optimising thyroid hormones will allow you to successfully address other deficiencies such as iron, Vit B12, folate & Vit D. Once these were optimised if Levothyroxine continued to only offer you low FT3 levels this would then indicate poor conversion abilities, often due to the low TSH in Central hypothyrodism, and when T3 could possibly be introduced.

Ferritin 34 - (23 - 300) Regarding your iron question above, yes a ferritin level of under 4% needs immediate attention. Has this not been highlighted by your GP or anyone of the specialists?

Regarding other hormone testing, if you were under a functional endo I would agree this would be useful to receive a comprehensive & holistic approach, but under your GP who will have no idea of the connections, at the moment in time I would not advise because it risks muddying the waters further. Also, other hormones frequently sort themselves out once thyroid hormones are optimised.

kaju20, you posted TFT’s photo right near the end of this post so others will have missed it. If you start a new post entitled something like ‘Undiagnosed & unmedicated - please check TFT’s’ other members will give you their opinions.

kaju20 profile image
kaju20 in reply to radd

This world needs more people like you. You've literally sorted all my concerns and "what ifs". You really are such a lovely person to use your knowledge to benefit others. I really cant thank you enough. My head feels so much more clearer and determined. I have a game plan now and even if I get no where with the endocrinologist I think I will start self medicating. Once i get there I'll research how much and how often to increase if necessary. I cant thankyou enough for all your help!

Bertwills profile image
Bertwills in reply to kaju20

Sorry to abandon you. I’ve had a busy day with the family in the beautiful autumn weather today. It seems that you have received some excellent advice.

I take T3 ,usually on its own, & have found my symptoms lessen. I’d love to see what effect it has on your levels.

I have been recommended a private doctor in Bristol who prescribes T3. I can let you have her details if you’re interested. I haven’t yet consulted her myself.I feel that, if possible, you should delay surgery until all other avenues have been explored.

kaju20 profile image
kaju20 in reply to Bertwills

No need to apologise at all ! I appreciate your time, you've been very helpful! That would be very kind if I can have her details in private message please as an option. If this endocrinology appointment comes to nothing I do really want to find someone who will be thorough and get me on my way Thankyou so much!

Bertwills profile image
Bertwills in reply to kaju20

Sorry just realised I could enlarge the photo!

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