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
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.
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!
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.
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 ? 🌻
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
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 !
I'm not sure if i was supping b12, i'm pretty sure i wasn't
If you were supplementing B12 then the result is skewed. How are you improving your Folate ?
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.
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
Meant to include this link:
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.
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
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.
Thankyou.. yes, I wasnt enamoured with his overall attitude.. he wouldn't comment on diet and said swallowing and dizziness were unrelated to thyroid
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
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
bestpractice.bmj.com/topics...
I've been on it for years.. does that make any difference?
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?
Thanks for your help on this.. I really didnt trust his opinion so good to know to question these things..
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..
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.
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.
🤣🤣🤣 Unfortunately, that wouldn't surprise me, either!
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.
Hi.. my gp did all other tests, apart from t3.. my endo advised not doing t3
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
Thankyou.. so just to clarify.. the ft3 result is a good indicator without coming off levo?
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
Thankyou.. I'm off comp for rest of day but will post the results u suggested tomorrow.. I'll sort out the other tests..
Question for thyroidectomized patients: iodine processing issues?`
Iodine.
iodine supplements: Yes or no?
Iodine Supplementation
