Here again with more weird symptoms! Anyone help? - Thyroid UK

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Here again with more weird symptoms! Anyone help?

meggiemog profile image

Sooo I have ended up here yet again! And really I have no idea what is going on with this body of mine! I am having another thyroid blood test next week - and I am also waiting for a salivary ultrasound for Sjogren's (which I have been waiting for since August...) To be honest I am not so sure my thyroid is my issue - but the last 12 months have been interesting to say the least. My digestive system went into free fall - so I was put on a low FODMAP diet - which has only pointed out I have a massive problem with gluten and oats. During this time I kept breaking out in hives randomly and being and feeling fairly sick. Getting seen by anyone has been a complete nightmare due to COVID! However I have had some real nasties ruled out.

I am now on a gluten free diet - and have lost over 2 stones in weight (which I haven't been trying to do and I didn't lose any weight until July when it suddenly started to drop off), and have had some strange things happen with my skin which I can't really pinpoint to weight loss. I have dents appearing - one on the back of my hand, which I have tried to photograph, but it isn't so clear as if you were looking at it. It's like someone has poked me really hard! I still get random skin rashes and sickness which I haven't been able to pinpoint to anything. I can eat something one day - it will give me a rash - the next time I have it I am fine. I am still seeing GI as I have an issue with my ant-reflux repair - which explains the sickness but not the rashes or skin issues. GP wants my thyroid tested again to see if that is the problem?!

Anyone have any advice?

16 Replies
SlowDragon profile image
SlowDragonAdministrator

Strongly suggests autoimmune thyroid disease also called Hashimoto’s

Hashimoto’s frequently starts with transient hyperthyroid results and symptoms before becoming increasingly hypothyroid

Gluten intolerance and hives are extremely common with Hashimoto’s

Strongly recommend getting FULL thyroid and vitamin testing redone

Previous results from year ago

ferritin 148 13-150

folate serum 8.14 >3.89

Vitamin B12 - active 47.4 37.5 - 188

Vitamin D 28.9 50-175

TSH 2.23 0.27-4.2

Free T3 3.91 3.1- 6.8

Free Thyroxine 15.1 12-22

Thyroglobin antibodies <10 <115

Thyroid peroxidase antibodies <9 <34

Vitamin D extremely low - aiming to improve to at least around 80nmol and 100nmol may be better

B12 low

Folate ok

What vitamin supplements are you currently taking

Ft3 terrible

Ft4 not brilliant

20% of Hashimoto’s patients never have high thyroid antibodies

Recommend getting thyroid ultrasound scan done. £150;if GP unwilling

SlowDragon profile image
SlowDragonAdministrator

Obviously you need to retest vitamin levels

Thyroid levels need testing twice year

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

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

List of private testing options

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

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

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

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

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

monitormyhealth.org.uk/

Also vitamin D available as separate test via MMH

Or alternative Vitamin D NHS postal kit

vitamindtest.org.uk

About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s.

Gluten intolerance is often a hidden issue to.

Link about thyroid blood tests

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

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

List of hypothyroid symptoms

thyroiduk.org/signs-symptom...

20% of Hashimoto's patients never have raised antibodies ....as demonstrated by this post ultrasound can be very helpful

healthunlocked.com/thyroidu...

Paul Robson on atrophied thyroid - especially if no TPO antibodies

paulrobinsonthyroid.com/cou...

SlowDragon profile image
SlowDragonAdministrator

Hives and Hashimoto’s

thyroidpharmacist.com/artic...

meggiemog profile image
meggiemog in reply to SlowDragon

Thanks SlowDragon,You are always so helpful. I was planning on getting the full thyroid blood test re-done when things calm down again. I can't do the finger prick thing as I am always told I am dehydrated when I have bloods drawn! I don't bleed easily. I do make sure I drink at least 2-3 litres of water a day but I just seem to wee more :-) I use the local hospital to get the blood drawn through Medichecks - but I think they are pretty busy right now!!! I will see what happens with these results and then take it from there. I did have a thyroid ultrasound done about 18 months ago (or so) all they found were bone spurs on my neck, thyroid was unremarkable at that point. I know things change in time - but I think GP will be reluctant to re-send me unless the test results suggest he should.

SlowDragon profile image
SlowDragonAdministrator

What vitamin supplements are you currently taking

Perhaps just do vitamin D test now ....only needs 4 drops of blood

meggiemog profile image
meggiemog in reply to SlowDragon

I have been taking vitamin D ever since I had low reading - all with the intention of getting checked again - but then COVID arrived! I don't think I can even do 4 drops of blood - even when I cut myself I don't bleed much. I should have said I am on HRT (had full hysterectomy) and propranolol slow release (for migraine prevention) & vitamin D . I have been on HRT a very long time - not ideal I know - but I had a premature menopause at 28 (1 ovary removed due to cyst) and it was never investigated (much later hysterectomy due to huge fibroid). Then there's stomach / bowel issues and my hiatus hernia / acid reflux repair - just falling apart at seams I think!! Another problem that has arisen in past 2 years is severe hearing loss in one ear (proved as irreversible nerve damage) , moderate in my good ear, which again they can't find the cause of, which is really, really frustrating. I know everything could be linked to auto immune conditions - but no one yet has joined the dots and given a conclusive answer. Part of the problem is my blood results are always 'in range' and I have never had any antibodies show in specialist testing. I do have a strong family history of auto immune problems though, as my Dad & brother both have diabetes (type 2 & 1) - as did my late Mum. I have been tested regularly for diabetes and so far I am clear of this. There's also family members with RA and MS. I do suspect my Mum had an undiagnosed thyroid problem though, as she had classic hypothyroid symptoms. She hated doctors - so that was never checked after type 2 diabetes was diagnosed. Would be good to finally get some kind of diagnosis and not feel like I am wasting my GP's time.

SlowDragon profile image
SlowDragonAdministrator in reply to meggiemog

Firstly propranolol will be slowing conversion and uptake of thyroid hormones

It’s used to treat hyperthyroid patients.

Headaches and migraines are hypothyroid symptom

Propranolol will also be affecting blood test results

I was stuck on propranolol almost 20 years...more on my profile.

Propranolol also lowers magnesium levels. Not good with vitamin D deficiency

You CAN NOT just stop propranolol, it must be weened off incredibly slowly

How much propranolol are you currently taking?

meggiemog profile image
meggiemog in reply to SlowDragon

I am on propranolol 80mg - take it at night as it is for migraine prevention nothing else. Prior to being put on this I kept getting these funny turns when I felt really dizzy, and my heart would pound, I would feel like passing out - then the headache from hell. It really scared me at the time. Not had this since taking propranolol. Neurologist put it down to vestibular migraine.

meggiemog profile image
meggiemog in reply to meggiemog

Should add it wasn't a panic attack- and would happen at anytime.

SlowDragon profile image
SlowDragonAdministrator in reply to meggiemog

Far more likely due to being hypothyroid ...that’s typical hypothyroid symptoms

You really need to consider trying to ween off it...it’s likely masking your hypothyroidism

meggiemog profile image
meggiemog in reply to SlowDragon

I will have a chat with my GP about coming off the propranolol - I don't really like being on them to be honest.

SlowDragon profile image
SlowDragonAdministrator in reply to meggiemog

Has to be done incredibly slowly

You need to make sure all vitamins are optimal

Are you currently taking any magnesium?

Propranolol lowers magnesium and parathyroid hormones

meggiemog profile image
meggiemog in reply to SlowDragon

Yes there's magnesium in the vitamin D supplements I am taking. I do try to eat a lot of fresh fruit and veg too.

SlowDragon profile image
SlowDragonAdministrator in reply to meggiemog

labtestsonline.org.uk/tests...Drugs that may decrease PTH include cimetidine and propranolol.

SlowDragon profile image
SlowDragonAdministrator in reply to meggiemog

Acid reflux is common hypothyroid symptom due to LOW stomach acid

Thousands of posts on here about low stomach acid

healthunlocked.com/search/p...

Web links re low stomach acid and reflux and hypothyroidism

nutritionjersey.com/high-or...

articles.mercola.com/sites/...

thyroidpharmacist.com/artic...

stopthethyroidmadness.com/s...

healthygut.com/articles/3-t...

naturalendocrinesolutions.c...

Far, far too frequently this is misdiagnosed as high stomach acid and patients left on omeprazole or similar for months or years .....leading to even lower vitamin levels

Hearing loss may be affected by low B12 or low B vitamins generally

I haven't got my test results - I had my blood test done 1st thing on Wednesday - had a telephone call Thursday to go in for another blood test next week. I think my GP was actually off on New Years Eve - but I have been told I must drink a lot of water, no caffeine, and no meat the day before my blood test. I'm thinking kidneys not thyroid results that have come back not in range. Guess time will tell.

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