Iodine deficiency: Just read the letter the endo... - Thyroid UK

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Iodine deficiency

Jump1 profile image
42 Replies

Just read the letter the endo sent to my gp.

Says he wonders if i have iodine deficiency. Told me to continue to supplement iodine.

Says all thyroid are normal except anti tpo which is slightly raised.

I knew my antitpo were slightly raised. My tsh is 3. I have had nearly 2 years of diffuse hair loss thinning.

He says i have lateral eyebrow loss. I have eyebrow koss throughout my eyebrow and thinning. He didnt mention my hair.

He told me he didnt think it was my thyroid. And told me to supplement with iodine. Also waitinf on vit d test results. He is goig to retest n 5 weeks.

When i google iodine deficiency it says that it is connected to thyroid. Why has he told me.he doesnt think it is my thyroid if he thinks it is iodine deficiency and it is connected. Could someone please help i am confused.

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SeasideSusie profile image
SeasideSusieRemembering

Have you had iodine tested? Are you deficient?

Jump1 profile image
Jump1 in reply to SeasideSusie

He didnt test it he suspects it based on my symptoms. I have just ordered private test hopefully it will arrive tmw.

He tested vit d. I dont think the practice does iodine test that maybe why didnt recommend testing it. Not sure

Should i stop taking iodine seak kelp from holland and barrett before i test have been taking 3 every day for a week now?

He was concerned about the coldness of my hands and commented in the letter to gp about my lack of sweating and eyebrow hair loss. Also mentioned i said i had hair loss from head. But because he prob used to seeing worse was he prob didnt think was 2 bad. Even though 60 percent gone and it is so weak and fine.

SeasideSusie profile image
SeasideSusieRemembering in reply to Jump1

Although iodine deficiency can be a cause of hypothyroidism, it actually very easy to get enough iodine from diet - a glass of non-organic milk and a yogurt daily is enough. It is very stupid to "wonder if you have iodine deficiency" and suggest supplementing without testing. Iodine is used to treat overactive thyroid and it's definitely not a good idea when you have Hashi's (which your raised TPO antibodies confirm).

What he should have tested is FT4 and FT3 along with TSH.

Should i stop taking iodine seak kelp from holland and barrett before i test have been taking 3 every day for a week now?

Well I would, because you want a baseline and continuing to supplement will be measuring what you are supplementing.

Are you taking Natures Garden Sea Kelp Tablets 15mg? If so each tablet contains 150mcg iodine and you are taking 3 a day = 450mcg iodine which is a massive amount.

What iodine test are you doing?

Jump1 profile image
Jump1 in reply to SeasideSusie

Yes. That's the ones. He is testing thyroid in 5 weeks. My most recent thyroid results were from 6 weeks ago 2 weeks before h pyloro treatment. Said it was too soon to test after treatment. I have been googling about iodine. Alot of medics suggest if you are deficient the 450 is not enough. He said my antibodies were mildly raised and likely caused by the h pylori. He said he would hope they fix themselves in 6 weeks when he retests after the h pylori is gone.

How many days after iodine supplementation should i wait to test?

For 2 years i have had 2 yogurts a day. Since h pylori infection i have hanged to the fage yogurt because of probiotics and high protein. I would have before antibodies result had nearly a pint of milk most days with my cereal. I dont tske the cereal since then. I have eggs for breakfast scrambled so alot less milk. I never ever put salt on any food though. Never dont even buy salt. Do not eat processed foods.

Up until about 6 months ago i also had cod once a week. Restarted taking it last week as a meal.

I said to.him.about iodine and hashis and he said that was wrong. I would be okay and should take it.

I just took.some iodine an hour ago and my hands are warmer. They were freezing before it.

SeasideSusie profile image
SeasideSusieRemembering in reply to Jump1

Alot of medics suggest if you are deficient the 450 is not enough.

But you don't know if you are deficient, and if you aren't then 450mcg is a massive dose.

For example, I did an iodine test. I was exactly midrange at 150 (100-199). My then practioner recommended a multi-supplement which contained 150mcg iodine. I queried it, stating I wasn't deficient and was told "It's not very much". I retested my iodine a few months later and my level had jumped to 250. I stopped the supplement containing iodine immediately and supplemented the essential items separately.

What iodine test are you going to do?

Jump1 profile image
Jump1 in reply to SeasideSusie

The blood one that medichecks offer. Its the only one they do

Jump1 profile image
Jump1 in reply to SeasideSusie

my vitamin d results came back at 80 he just rang me. he said anything about 50 is good. I would have thought I was deficient in it as haven't seen much sun, but obviously must be getting it from food. or the omega 3 supplement I was taking

SeasideSusie profile image
SeasideSusieRemembering in reply to Jump1

Jump1

I assume that is 80 nmol/L It usually is in the UK.

If so then it is just within the replete range (75-200). The Vit D Council recommends a level of 100-150nmol/L.

As it's winter and we can't make Vit D naturally from the sun and we draw on our stored Vit D, it's a good idea to supplement throughout the winter months with something like 2000iu daily, along with important cofactors including K2-MK7 and magnesium vitamindcouncil.org/about-v...

Jump1 profile image
Jump1 in reply to SeasideSusie

just sent you another message. should I wait until after the nutritional tests next week or start with D3 now? I stopped all supplements yesterday until I get the nutritional dr

Jump1 profile image
Jump1 in reply to SeasideSusie

I suppose I am wondering is it likely at 80 to be affecting the thyroid?

SlowDragon profile image
SlowDragonAdministrator in reply to Jump1

Kelp and iodine supplements can make autoimmune thyroid much worse

thyroidpharmacist.com/artic...

drknews.com/iodine-and-hash...

if after testing by a specific iodine specialist (not sure there are any iodine specialists in Uk) it was found you are genuinely deficient in iodine then selenium is equally important before adding iodine

Jump1 profile image
Jump1 in reply to SlowDragon

as of today I have stopped all supplements. I was supplementing with selenium as well. I have an appointment with a GP who has given prescriptions for T3 and listens to symptoms. I rang him, talked to him about what was concerning me - told him about hair loss, lack of sweating and light periods. He asked my tsh level I told him he said within range. I said my antibodies above range by 9. he said that I was heading towards hashimotos. said I wouldn't get treatment, it would be a wait and see approach. as everything else was in range even with the hair loss. said the only way to come to him was if was feeling bad or getting worse for instance depressed or anxiety. i then told him for the past 2 years I have been depressed and anxious about the hair. he agreed straight away to appointment. he is going to do lots of nutritional tests on me, and wait for the results and see what he says. he is the first out of 5 GPs, an Endo and 2 dermatologists that actually said, you are heading towards hashimotos. this really I think is my last resort if I don't get anywhere with him I have no where else to go and nothing more I can do, until I get sicker and sicker. I have pains in both flanks today. appointment next Thursday so I am stopping everything including the probiotic I was taking for stomach after h pylori treatment

SlowDragon profile image
SlowDragonAdministrator in reply to Jump1

Hashimoto's is connected to HPylori

hypothyroidmom.com/hashimot...

Gluten free diet probably essential

Are you gluten free?

Zinc linked to hair loss and to Hashimoto's

thyroidpharmacist.com/artic...

ncbi.nlm.nih.gov/pmc/articl...

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

Jump1 profile image
Jump1 in reply to SlowDragon

yes have gone gluten free, as of few weeks ago. this new gp is doing all nutritional tests he believes their is a connection to it all. the hair loss and stomach pains all began at the same time. 2 years ago stomach pain maybe couple months before. I had huge stress levels with work then too. stress is reduced except for worry about my health and hair. I made connection with hpylori when I saw raised antibodies and stomach pain. was told by all gps not connected for over year and half. I hope it is this and it can be caught and stopped and helped

greygoose profile image
greygoose

This man really excels in stupidity. You don't just think someone has something and treat for it, you do tests to find out if they have it. Iodine is not something to mess around with. If you are deficient, it's not just a case of taking a tablet and all is miraculously resolved! You need a specialist to guide you, there are protocols to follow. He obviously knows nothing about it. And, as you have antibodies, it could be the worst thing you could do. Like throwing petrol on a fire. I think you ought to find a new endo, this one could do no end of harm.

Jump1 profile image
Jump1 in reply to greygoose

He is the only endo that will prescribe t3. He came with good recommenations. No other endo believes there is a problem with my thyroids and it is causinf hair loss. I will wait until.i get the results for the iodine back. I have ordered the test. I will take no more iodine until after it. Will take the test on satursay 48 hours do you think should be enough time for supplement to go out of my system

greygoose profile image
greygoose in reply to Jump1

Well, he doesn't believe it, either, you said. Did he actually test thyroid hormones? TSH, FT4, FT3?

I really don't know if the supplement will be out of your system, but I doubt it. Iodine is not like other minerals, it is continuously recycled in the body. So, if you did have a deficiency, you probably don't have anymore. Or, at least, not such a serious one. How stupid to tell you to take iodine before getting the test! It won't be terribly accurate.

And, before anyone jumps in and says that excess iodine is excreted. In my experience, it isn't. So, you could even test high in iodine.

Also, what exactly does he means by iodine deficiency symptoms? Hair-loss? There's a lot more to it than that. He might have been able to tell if he'd done your thyroid bloods, but he hasn't even done that. I think he just plucked an idea out of a hat and ran with it. Not exactly scientific, is it.

Jump1 profile image
Jump1 in reply to greygoose

So how long should i wait to do the test then. After a week of supplements. No he doesnt think it is.

He didnt want to test because i only had the h pylori test and treatment 5 weeks prrviously. Said to retest in 5 weeks my thyroid. He tested my vitamin d. Waitinf on resukts. I reckon i am deficient in that. Havent bern out in the sun much at all. Neither do the 2 derms or 3 gps think it is thyroid. Or family member who is dr.

Based on my lack of sweating cold hands and hair loss i think. He comments on those in the letter. He did comment on the coldness of my hands durinf the co sultation

greygoose profile image
greygoose in reply to Jump1

He's unbelievable. I think he might just qualify for this weeks Worst Endo in The World award. What has being tested for H pylori five weeks ago, got to do with testing for thyroid this week?

And I really don't think cold hands are caused by iodine deficiency.

I really don't know when you should do the test. Personally, I wouldn't even bother, as you have over-range antibodies. You have Hashi's, so you are either hypo now, or going to go hypo, soon, so supplementing with iodine is out of the question.

Jump1 profile image
Jump1 in reply to greygoose

If there was a dislike button id dislike the end of your comment. Not good news. He said to me eradicstion of h pylori can reduce the antibodies and it is a known cause of them. So he is hoping for it. He actually said we will retest and will know then if your thyroid is malfunctioning.

By way i have read numerous articles this evening while researchig this saying it does cause lack of sweating and cold hands. So there does appear to be a link according to.those articles. If you google cold hands and iodine def stuff does come up. I only thought cold hands meant your blood was the problem (iron)

greygoose profile image
greygoose in reply to Jump1

'He said to me eradicstion of h pylori can reduce the antibodies and it is a known cause of them'

Well, first I've heard of it.

Jump1 profile image
Jump1 in reply to greygoose

thyroidpharmacist.com/artic...

I had read a few articles about it as well

greygoose profile image
greygoose in reply to Jump1

Yes, I was just reading that.

Even so, that is not a reason not to test your thyroid hormones. If the antibodies have already damaged your thyroid, then thyroid hormone is likely to be low. Even if you eradicate the H pylori, thus lowering the antibodies, you cannot repaire the damage already done to your thyroid. And, if it is low thyroid hormone causing your symptoms, then you need thyroid hormone replacement, no matter what your antibody level.

Jump1 profile image
Jump1 in reply to greygoose

So will the thyroid not resolve once the problem is removed? Is it permanently damaged and needs medicine to fix it and not the bodies natural healing?

greygoose profile image
greygoose in reply to Jump1

If the thyroid is too badly damaged, it will not recover, no. The damage is permanent. And, there is no 'medicine' to fix it, either. What you will need is thyroid hormone replacement : levo, T3, NDT.

And, iodine will not fix it, either, only make the problem worse. It can fuel the immune system attacks. If you compare a list of iodine deficiency symptoms, and a list of hypo symptoms, you will find they are more or less the same. Which isn't surprising because low iodine means low thyroid hormones, because iodine is one of the ingredients of thyroid hormone.

But, that doesn't mean that every person with hypothyroidism has low iodine. There are many reasons for becoming hypo. The main reason is having high antibodies, because that means that your immune system is slowly destroying your thyroid. And this usually starts a long time before you suspect that there is a problem. By the time you have symptoms bad enough to seek medical help, a lot of damage has been done. It's rare to catch Hashi's in the early stages, because routine testing isn't done - even now, your endo isn't doing all the tests, is he? He's fixating on iodine, rather than the implications of the antibodies.

The problem is, doctors are just not educated enough to recognise and investigate thyroid problems. And they are taught to let things get really bad before they even test! As soon as your endo saw high antibodies, he should have tested thyroid hormones, and prescribed enough thyroid hormone replacement, to suppress your TSH, which would have slowed down the progression of the disease. He could then have started investigating and trying to eradicate the root cause of the immune problem. In stead of that, he starts 'thinking' about hypothetical diagnoses - like low iodine - and starting treatments without doing any tests.

Meanwhile, your immune system continues to attack your thyroid...

SeasideSusie profile image
SeasideSusieRemembering in reply to Jump1

No other endo believes there is a problem with my thyroids and it is causinf hair loss

Other causes of hair loss healdove.com/disease-illnes...

My tsh is 3

And what about FT4 and FT3?

A 'normal' TSH (as 'in range') with low FT4 can be secondary hypothyroidism where the problem lies with the pituitary or the hypothalamus. That should be considered.

Lozzer66 profile image
Lozzer66

Read "Tired Thyroid's " chapter on iodine .it's unbelievably complex!...scarey as! ....I wouldn't ever go near it apart from what a healthy balanced diet would naturally give me ..

Jump1 profile image
Jump1

Oh i am doing the blood test was the only one medichecks supplied

SeasideSusie profile image
SeasideSusieRemembering in reply to Jump1

A urinary iodine test (non-loading) with Genova Diagnostics ordered with ThyroidUK as your practioner, is better.

Jump1 profile image
Jump1 in reply to SeasideSusie

Thanks will order it too. Not sure when to test it though because of feeback above.

My results 7 or 8 weeks ago

Ft4 16.6 pmol/l 12 -22

T4 106.5 nmoll 59 -154

Tsh 3.32 0.27 - 4.2

Ft3 4.69 pmol 3.1 -6.8

Rt3 16 ng dl 10 - 24

Thanks for that link someone else on here gave me that link too.

SeasideSusie profile image
SeasideSusieRemembering in reply to Jump1

Those thyroid results would be considered normal. You have a decent amount of natural thyroid hormone, as shown by your Total T4 result, your FT4 is 46% through range and FT3 at 42% through range, they are balanced but a little on the lowish side. However, a TSH of 3.32 suggests your thyroid is beginning to struggle and in another country you would have a diagnosis of hypothyroidism when it hits 3.

What I would be looking at here is vitamins and minerals. Are they all at optimal levels for thyroid hormone to work (that includes our own thyroid hormone). So first thoughts are to test

Vit D

B12

Folate

Ferritin

and if Ferritin is low (may be because of hair loss) then test

Full blood count

Iron panel

And because of the hair loss, maybe test some of those others in the list in the link.

I would also be looking at general thyroid and adrenal supplements which include

Vit C - minimum 2000mg daily in divided doses

A good B Complex

Selenium - helps conversion of T4 to T3

Other tests to consider:

24 hour saliva adrenal test to include cortisol plus DHEA (Regenerus and Genova include DHEA, Medichecks doesn't)

Sex hormones

Thyroid/adrenals/sex hormones are all connected.

So much more to look into before diving in with iodine supplement. Personally I would forget the iodine test for now and stop supplementing. Include items from the BDA iodine fact sheet which you can download from this link ukiodine.org/iodine-food-fa...

Jump1 profile image
Jump1 in reply to SeasideSusie

Thank you. B12 is good doesnt appear to be any problem there. Ferritin was 50 a few weeks ago. Supplememting it again. Vit d waiting on test. Folate good. Full blood and iron fine. Cortisol blood test done. No issue with that by all accounts.

Hormones done they said no issue with those and i was ovulating.

Lh 18.0 IU/L Serum testosterone 1.4 nmol/L SHBG 86 Free androgen index 1.6 ratio Serum progesterone 39.9 nmol/L Serum Fsh 5.0 Serum oestradiol 596 pmol/ on day 20 of 32

I take other than iodine the following

B complex 50,

multivitamin

Selenium

Zinc

Colostrum

Probiotics.

Vitamin d

Codliver oil

Jointcare omega 3

Ive bought the iodine test already so cannot return.

Will order the dhea test tmw 4 sure thanks for that one

SeasideSusie profile image
SeasideSusieRemembering in reply to Jump1

Good/fine doesn't mean much. These are the levels needed

Vit D - 100-150nmol/L according to the Vit D Council

B12 - an extract from the book, "Could it be B12?" by Sally M. Pacholok:

"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".

"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."

Folate - at least half way through range

Ferritin - minimum 70 for thyroid hormone to work (our own or replacement), better half way through range

Multivitamins are a waste of time, they contain too little of anything to help, usually use the cheapest and least bioavailable forms of ingredients, if they contain iron nothing else can be absorbed as iron must be taken 2 hours away from anything else, if it contains calcium then even the iron wont be utilised (and calcium needs to be tested before supplementing)

Vit D has important cofactors vitamindcouncil.org/about-v... - magnesium to help it work, and K2-MK7 to direct the increased uptake of calcium to bones and teeth and away from arteries and soft tissues

Jump1 profile image
Jump1 in reply to SeasideSusie

Thanks will scrap the multivitamin. I have magnesium tablets. So must start taking them

b12 699 197 - 771

Active b12 61 25.1 -165

I should have said i take vit d3.

Thanks for all info

Jump1 profile image
Jump1 in reply to SeasideSusie

just read through it I see I need to get my vitamin D up another 20. I will start taking more of the vitamin D3 tablets as of today then. I can let the GP know that is retesting me next week for nutritional issues that vitamin D3 is currently at 80 or should I wait?

SeasideSusie profile image
SeasideSusieRemembering in reply to Jump1

Your call. Most doctors know very little about nutrition and optimal levels. I optimised all mine without any input from doctors. I keep my Vit D as close to 150nmol/L as possible with my maintenance dose and check it twice a year.

G2G2 profile image
G2G2

Risky to supplement iodine with Hashimoto's. Iodine has been to shown to increase thyroid antibodies. With iodine supplementation, selenium's needed & salt (good salt like Himalayan pink).

Jump1 profile image
Jump1

I am arranging to see another doctor that has been recommended. He focuses on nutritional issues and vitamins. See what he says. Hope to get appt next week. This is so hard. Everywhere i turn i am hearing the opposite and different views and opinions. Drs derms endo say one thing. People in here say different. So blooming confusing and hard to know what to do for best. Nothing working so far. All i want is to be back to normal. There has to be a dr somewhere that cares knows that they are talking about and can hekp me. Everyone sayin my ranges are normal and wont get thyroid treatment for high tsh. So what do i do.

Jump1 profile image
Jump1

Just off the phone to dr in the south of ireland that was recommended. Said i wouldnt be treated with my tsh they way it was. That my antibodies are risig heading towards hashimotos. Said it would be wait and see. I said i wanted to see him as he was recommended to see if i have any deficiencies i could address. 400 euro for all tests. He said only would come to him if i was suffering from anxiety or depression starting to feel bad. I said i def have i have been depressed and anxious about the hair loss for 2 years. He gave me appt then.

Why did he agree to see me when i told him that i was depressed and anxious yet wasnt going to based on my physical symptoms and tsh and antibodies ressults. Will let you know what he says. Some of the test results done in america england and dublin. So i imagine it will take a couple of weeks.

Just read his profile one of his interests is pyschiartry. Get it now. But seems so odd to me that without saying about my mood he wasnt goig to take me and just wait and see aproach again. No chance i am taking antidepressants. Solve my hair and my mood will rise. Not give me antidepressants. Depression has been xauses by the hair loss fix it and i will be fine again

Jump1 profile image
Jump1

Dont know what good it will do or what it will show me but i also sent of hair for a hair mineral analysis to medichecks the other day. Hopefully get some useul infornation from that.

Lozzer66 profile image
Lozzer66 in reply to Jump1

I'd be interested to know how this goes Jump1! I hope you can find an answer soon .

Jump1 profile image
Jump1 in reply to Lozzer66

will do. knowing how I feel myself and all the hurdles and illnesses that I have had that I think have contributed to this. I want to be able to give the information to others, who are going through it, because you don't get answers from doctors. it has cost me a fortune so far. I reckon 1500.00 since March when I started going to private derm, and getting my own tests and medication.

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