Iodine and other issues: hi, i now know that I... - Thyroid UK

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Iodine and other issues

pelakey1
pelakey1

hi, i now know that I have Hashimotos with a multinodular goitre, I have other issues too such as panic attacks, a swallowing disorder and disequilibrium, my question is a general one about Iodine supplements but if anyone could shed any light on the other symptoms that would be a bonus as doctors are nonplussed

the main question is, is it ok to take an Iodine supplement as salt isn't good for balance issues.

Many Thanks

42 Replies

Has your swallowing disorder been given a name by your doctor? Swallowing problems are common with thyroid disease because the thyroid may swell to create a goitre. It doesn't always swell outwards to produce a visible lump. It can swell inwards towards the throat, or downwards towards the chest.

Doctors often blame problems with swallowing on panic and anxiety, which in the case of thyroid disease where the patient has a known goitre is absolutely bizarre because they must get taught about goitres (you would think).

disequilibrium

Do you mean poor balance? Low levels of vitamin B12 can cause balance problems. For the body to make use of B12 it must also have sufficient levels of folate. So low folate can lead to poor balance too. Low nutrient levels are very common in thyroid disease. In hypothyroidism this is most likely to be caused by low stomach acid leading to poor absorption of nutrients from the diet. In hyperthyroidism, I think that the metabolism can be speeded up, using up nutrients more quickly than normal.

Panic and anxiety can be caused by low levels of thyroid hormones and also low nutrient levels. Personally, my problems with anxiety disappeared once I got my ferritin (iron stores) and my serum iron levels as close to optimal as I could.

Doctors seem to consider nutrients to be unimportant, optional extras. This is not true. But doctors don't get any training in nutrition, and consider any test result for nutrients to be fine even if they are close to bottom of the range. In some cases doctors will also say a result is fine if they consider it to be "close enough" to the range.

pelakey1
pelakey1 in reply to humanbean

My swallowing issue has been called a dysmotility and is being investigated somewhat slowly by Speech and language team. My endocrinologist who investigated nothing at all said that it wasn't due to my goitre. I think my levels are ok and have made steps to bolster my nutrient levels.

The balance issue has been called disequilibrium and is a bit like vertigo except that instead of spinning, you feel like you are falling, its very bizarre and quite unpleasant.

I think my b12 levels are good

Panic and anxiety has been an issue for years without me really knowing it in a minor way. Lately though it has ramped up and includes rapid heart rate and weird feelings in my head.

I have (because of the swallowing) removed all breads and most grains from my diet so I have no idea if that's good or bad for any of these issues.

I have also removed pretty much all cows milk

Thanks for getting back to me!

humanbean
humanbean in reply to pelakey1

Has anyone tried the Epley Manoeuvre on you? It can be done at home. Some people manage to do it by themselves, some people need someone to do it for them.

It is a treatment for vertigo. If your condition is not vertigo it won't cause any problems that I'm aware of. (But always check anything you read online before going ahead!)

You can find Youtube videos of it being done.

en.wikipedia.org/wiki/Epley...

For more of a description than I've given, including instructions you can read the above link. But I'd suggest checking out Youtube videos as well before trying anything.

pelakey1
pelakey1 in reply to humanbean

Thanks again

Marz
Marz in reply to pelakey1

I notice you had private tests done a couple of months ago. Could you post them if possible. How good was your B12 ? - over 500 ? Folate ?

Have you investigated the vagus nerve - if weak it can affect the throat. Can you gargle well ? 🌻

pelakey1
pelakey1 in reply to Marz

Hi, thanks for reply.. as below

Vitamin B12 546 ng/L

>179 ng/L

Folate 6.4 ug/L

3.9 - 20.0 ug/L

Marz
Marz in reply to pelakey1

Were you supplementing B12 at the time ? Folate could be improved - mid range suggested here on the Forum ...

Did you manage to read up on the Vagus nerve ? Tis interesting !

pelakey1
pelakey1 in reply to Marz

I'm not sure if i was supping b12, i'm pretty sure i wasn't

Marz
Marz in reply to pelakey1

If you were supplementing B12 then the result is skewed. How are you improving your Folate ?

pelakey1
pelakey1 in reply to Marz

i wasnt advised to improve it, but i'll eat more foods with folate in them now you've mentioned it

Marz
Marz in reply to pelakey1

It's not what we eat but what we absorb ! B Complex ?

helvella
helvellaAdministrator

is it ok to take an Iodine supplement as salt isn't good for balance issues

Reading between the lines, possibly wrongly, you appear to be considering an iodine supplement because you cannot take much salt.

Most salt in the UK is not iodised. The actual iodine content of the majority of salt in the UK is between low and, effectively, zero. Taking less salt, or not taking more, will likely have very little impact on iodine intake.

In general, we suggest you check your iodine level by a non-loading urine test before starting any iodine supplementation.

Over 60% (by weight) of levothyroxine is iodine. If you take any thyroid hormone, you reduce you need for iodine in your diet.

pelakey1
pelakey1 in reply to helvella

Thanks for this input, I use iodized salt! But its very interesting to know that we need less as levo takers!! very useful info, thanks

helvella
helvellaAdministrator in reply to pelakey1

Meant to include this link:

dropbox.com/s/5iz07xh8dr1n4...

I started with discomfort in swallowing after being titrated up on Levo, like a lot of thyroid sufferers experience.

It definitely was not an hysterical response like I’ve read it gets put down to.

I had samples taken from down my throat and have Eosinophillic Oesophagitis.

I think a reaction to the Levo medication x

yes, I had an endoscopy and they found nothing, they think my swallowing system has just stopped working efficiently as indicated on Barium swallow test

Thanks for the response!

I sure it will be because your thyroid is swollen but then I’m not a doctor x

Are you sure you're adequately medicated for your hypo? Is your TSH below 1 and your FT3 in the upper third of the range? All your problems sound like under-medication symptoms, to me.

pelakey1
pelakey1 in reply to greygoose

Thanks for reply

Thyroid Stimulating Hormone (TSH) 0.48 mU/L

0.27 - 4.20 mU/L

endo told me he wouldn't do ft3 without taking me off levo for 2 months firs

greygoose
greygoose in reply to pelakey1

Your endo is an idiot. What would be the point of that? He should not be dosing by the TSH because it's a very poor indicator of thyroid status. It will probably come as a shock to him, but it is possible to have a low TSH and a low FT3 at the same time, if you don't convert very well. And, if you don't convert very well, and your FT3 is low, you will still be hypo - despite the TSH! T3 is the active hormone, so that's what causes symptoms when it is too high or too low. Might be a good idea if you could get private labs done.

pelakey1
pelakey1 in reply to greygoose

Thankyou.. yes, I wasnt enamoured with his overall attitude.. he wouldn't comment on diet and said swallowing and dizziness were unrelated to thyroid

greygoose
greygoose in reply to pelakey1

Goodness! Does he actually know where the thyroid is located??? Of course it's related. But, I don't suppose he knows anything about diet. Really not the right person to ask.

Thanks for reply

Thyroid Stimulating Hormone (TSH) 0.48 mU/L

0.27 - 4.20 mU/L

endo told me he wouldn't do ft3 without taking me off levo for 2 months first

Marz
Marz in reply to pelakey1

Did he say why ?

SlowDragon
SlowDragonAdministrator in reply to pelakey1

Run away as fast as possible from any endocrinologist suggesting that...

You ONLY test after 6-8 weeks on constant unchanging dose and brand of levothyroxine

Which brand of levothyroxine are you currently taking

Do you always get same brand?

How much levothyroxine are you currently taking?

Approx how much do you weigh in kilo?

guidelines on dose levothyroxine by weight

Even if we don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

Also here

cks.nice.org.uk/topics/hypo...

gp-update.co.uk/Latest-Upda...

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

pelakey1
pelakey1 in reply to SlowDragon

I've been on it for years.. does that make any difference?

SlowDragon
SlowDragonAdministrator in reply to pelakey1

How much do you weigh approximately in kilo

Which brand of levothyroxine

When were vitamin D and ferritin last tested

Your symptoms suggest under medicated and/or poor conversion

Are you on absolutely strictly gluten free diet?

pelakey1
pelakey1 in reply to SlowDragon

Thanks for your help on this.. I really didnt trust his opinion so good to know to question these things..

SlowDragon
SlowDragonAdministrator in reply to pelakey1

Email Thyroid UK for list of recommend thyroid specialist endocrinologists

NHS and Privatetukadmin@thyroiduk.org

The aim of levothyroxine is to increase dose upwards in 25mcg steps until TSH is under 2

When adequately treated, TSH will often be well under one.

Most important results are ALWAYS Ft3 followed by Ft4.

When adequately treated Ft4 is usually in top third of range and Ft3 at least 60% through range (regardless of how low TSH is)

Extremely important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works

With autoimmune thyroid disease strictly gluten free diet frequently helps or is absolutely essential

Always get coeliac blood test BEFORE considering trial on strictly gluten free diet

I got the idea that it was because you have to be system free of levo to be able to do a pure test..

Marz
Marz in reply to pelakey1

Not heard that one before and I have been here since 2011 !

greygoose
greygoose in reply to pelakey1

Oooooooooo! I'm very tempted to say a rude word which would imply where he keeps his brains! Silly man. Bet he's a diabetes specialist. They always have strange ideas about thyroid.

helvella
helvellaAdministrator in reply to greygoose

I wonder if he gets his diabetes patients to fast for a week - or longer - before doing a "pure" test of their blood sugar (and/or insulin) levels?

greygoose
greygoose in reply to helvella

Nothing would surprise me now. We read such horrors on here.

tattybogle
tattybogle in reply to pelakey1

That's a little bit like ....having pain in a leg that you broke once upon a time , and the doctor saying , well there's no point X-raying it at the moment , cos it's healed , so we need to break it again to see how it looks when it is broken.

greygoose
greygoose in reply to tattybogle

🤣🤣🤣 Unfortunately, that wouldn't surprise me, either!

SlowDragon
SlowDragonAdministrator

What were full results from Blue horizon tests

Bloods should always be done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Just test TSH is completely inadequate

What vitamin supplements are you currently taking

We need optimal vitamin levels for good conversion of Ft4 to Ft3

Please add results for vitamin D and ferritin

TSH, Ft4 and Ft3

On levothyroxine we frequently have extremely low TSH when adequately treated.

Most important results are ALWAYS Ft3, followed by Ft4

Aiming for Ft3 at least 60% through range

See first reply in this post by diogenes

healthunlocked.com/thyroidu...

the best paper on this that I have seen indicates that a TSH of 0.03-0.5 is best on therapy. Above that is insufficient and below MAY or MAY NOT indicate slight overdosing.

pelakey1
pelakey1 in reply to SlowDragon

Hi.. my gp did all other tests, apart from t3.. my endo advised not doing t3

SlowDragon
SlowDragonAdministrator in reply to pelakey1

Suggest you look for new Endocrinologist

Ft3 is most important result

What was Ft4 result?

Was test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Essential to test vitamin D and ferritin too

Folate too low

supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial.

This can help keep all B vitamins in balance

Difference between folate and folic acid

chriskresser.com/folate-vs-...

B vitamins best taken after breakfast

Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)

Or Thorne Basic B is another option that contain folate, but is large capsule

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Suggest you get FULL thyroid and vitamins tested ASAP via Medichecks, Blue horizon or Thriva

Come back with new post once you get results

pelakey1
pelakey1 in reply to SlowDragon

Thankyou.. so just to clarify.. the ft3 result is a good indicator without coming off levo?

SlowDragon
SlowDragonAdministrator in reply to pelakey1

Absolutely

never ever stop levothyroxine before testing

Endocrinologist obviously clueless diabetes specialist

NHS terrified of testing Ft3 and finding its low .....because they don’t want to prescribe T3

First step is to get FULL thyroid and vitamin testing

Always test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

This gives highest TSH and lowest Ft4

Essential to test vitamin D, folate, ferritin and B12 at least annually

We frequently need to supplement continuously to maintain optimal vitamin levels

pelakey1
pelakey1 in reply to SlowDragon

Thankyou.. I'm off comp for rest of day but will post the results u suggested tomorrow.. I'll sort out the other tests..

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