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Bloods tests led to a decision to review after antibody follow up

LindyMc profile image
14 Replies

28th August: 9.30 am Thyroid function test

serum TSH 10.5 0.27 - 4.20 mu/L [up from 8. something a while back]

serum T4 level 16.9 pmol/L[down from 20.0 before]

Also serum cholesterol 6.2 mmol [up from 3.5 before] - significant apparently

At this point we decided to do an antibody test to check for autoimmunity. The results below were to be released to me and our review is Oct 8th by phone Dr checking with an endocrinologist and I was to investigate whatever sources I could, so as to form an idea of what I would be happy with!

Ordered thyroid antibody test 11th Sept - this time at 10.40

serum TSH 9.4 - not surprising given time

serum T4 level 16.2

Se Thyroid peroxidase Ab conc 46 iu/ml rang<35iu/ml

Have already been reading up on supplements here and so want to re-gig mine, before starting meds I guess?? 9 months ago contracted polymyalgia rheumatica and was treated with prednisolone, which through my particular circumstances, I managed to titrate my way out of it in 6 months (usually 18 +), but in consequence needed lots of supplements to counteract the worst of that drugs side effects, which I am still taking until they run out in order to build up a bit of a store! Also very aware of muscle loss/ height loss - am awaiting DXA results. I am looking for help with the essentials that I need to establish before Oct 8th and also some explanation as to the blood results I have provided and exactly what "Se Thyroid peroxidase Ab conc 46 iu/ml range<35iu/ml" means apart from it is not good! Many thanks.

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LindyMc profile image
LindyMc
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helvella profile image
helvellaAdministrator

"Se Thyroid peroxidase Ab conc 46 iu/ml range<35iu/ml"

Se = serum

Thyroid peroxidase antibodies - antibodies to an enzyme (Thyroid peroxidase) that would usually be found only within the thyroid.

46 - Raised a little above the reference level of 36. That is modest - we see levels massively higher at times. But it does indicate that you have almost certainly got autoimmune thyroid disease - often called Hashimoto's thyroiditis.

SlowDragon profile image
SlowDragonAdministrator

Welcome to the forum

serum TSH 10.5 0.27 - 4.20 mu/L [up from 8. something a while back]

With TSH over 10 you should have immediately been started on levothyroxine

With two separate tests with TSH over 5, and symptoms and high thyroid antibodies you should be started on levothyroxine

Starting levothyroxine - flow chart

gps.northcentrallondonccg.n...

Graph showing median TSH in healthy population is 1-1.5

web.archive.org/web/2004060...

Guidelines of dose Levo by weight

approx how much do you weigh in kilo

Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or somewhere near full replacement dose (typically 1.6mcg levothyroxine per kilo of your weight per day)

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

bnf.nice.org.uk/drugs/levot...

Some people need a bit less than guidelines, some a bit more

TSH should be under 2 as an absolute maximum when on levothyroxine

gponline.com/endocrinology-...

LindyMc profile image
LindyMc in reply toSlowDragon

Oh my. Didn't realize it was that bad. 53 kg BTW. Thank you so much for replying.

greygoose profile image
greygoose

The antibodies are not something to worry about in or of themselves. They are just an indication that you have Autoimmune Thyroid Disease - aka Hashi's. They are the result of the disease, not the cause. And the actual number isn't important, either. If they are over-range they are positive but they fluctuate all the time, and it really doesn't mean much. The important numbers continue to be FT4 and FT3, the thyroid hormones.

As to supplements, you need to get your vit D, vit B12, folate and ferritin tested, and supplement where necessary, with cofactors. Taking things you don't need it not going to help anything and could be dangerous. More is never better. :)

SlowDragon profile image
SlowDragonAdministrator

polymyalgia rheumatica is autoimmune

Having one autoimmune disease makes others more likely

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

LindyMc profile image
LindyMc in reply toSlowDragon

Thank you. No goitre so Ord's I assume.

SlowDragon profile image
SlowDragonAdministrator

looking at your age, standard starter dose levothyroxine is 25mcg

But dose will still be increased slowly upwards over coming months

Sleepman profile image
Sleepman

Cholesterol will normally fall with thyroid hormone, avoid statins for now would be general view from forum.

Well done for getting off the steroids and keeping some back.

I am wondering if PMR was really low thyroid issue. My Mum had a doubt earlier this year (hip) but it is a syndrome and not easy to diagnose on bloods. She is Hashi too.

A lot of hashi people cannot handle gluten and some are lactose/dairy intolerant too.

I did not show up on celiac blood test. Mum and me are gluten intolerant.

Do not be scared by the forum, there a small fraction who do not thrive on levothyroxine T4 only treatment and this forum helps sort that out. Hope you are in the simpler group ...

SlowDragon profile image
SlowDragonAdministrator

High cholesterol directly linked to low thyroid levels

nhs.uk/conditions/statins/c...

If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.

LindyMc profile image
LindyMc in reply toSlowDragon

You guys have been great. Thank you all. Reading some really interesting stuff in the links already provided. The gponline/ endocrinology link threw a couple of useful bits. Had long covid induced AF, all effects of which disappeared miraculously with 2nd dose of covid nearly 2 years ago. But the link between AF and increased chance of Hashimoto's might mean that reappears?? Also I have been schooled to beware of assuming PMR has gone but have managed without a flare thus far. But when you come off prednisolone, its anticipated the adrenaline function is suppressed. Should I be thinking of suggesting that I have that checked before start thyroid meds?As for the cholesterol, I have managed optimum Triglyceride/ HDL ratio of around 0.5 for years that the vagaries of LDL tend to be ignored - lots of resistance exercise and low sugar diet I presume. So there is no chance of anyone suggesting statins at this point.

humanbean profile image
humanbean in reply toLindyMc

But when you come off prednisolone, its anticipated the adrenaline function is suppressed. Should I be thinking of suggesting that I have that checked before start thyroid meds?

It wouldn't be standard practice, as far as I know. I've never heard of anyone having adrenaline measured before starting thyroid hormones. The other main stress hormone is cortisol and sometimes people get that tested but doctors don't volunteer to do this very often. Perhaps your particular circumstances make it possible it will be suggested. If it becomes an issue, you can get saliva testing done privately for cortisol levels - the results are more helpful than a blood test for cortisol, which is what doctors use.

But cortisol changes frequently, depending on your stressors. For example, having low thyroid hormones will often increase cortisol if the adrenal glands are up to the job. I would suggest that you wait a while before worrying about cortisol, although if there is any chance you could have Addison's Disease then the subject can't be avoided because untreated Addison's is very dangerous, and must be treated urgently.

Get your thyroid hormones up to a good level and work on optimising the nutrients - vitamin B12, folate, vitamin D, Ferritin (iron stores). Hopefully you can start to worry about cortisol at that point if necessary, but not before. The problem is that if you try to treat too many things at once then it starts to become almost impossible to work out what is causing your symptoms. And treating one thing might fix symptoms you thought were caused by something else.

Good luck, and welcome to the forum.

Dandelions profile image
Dandelions

The doctor should be prescribing levothyroxine to you, according to their own guidelines. I would pursue that first, and then look at other things which could be at play too. It can be very hard for many people on here to get the prescription that they need. With your levels qualifying you for levothyroxine in the doctor's eyes, I would ask for them now.

Yes, there are possibly more things to explore (adrenals, vitamins, etc), but if doing that first would lower your TSH levels a bit, you would probably still feel unwell and need the levothyroxine, but not be prescribed it anymore.

Sleepman profile image
Sleepman

I think they say if you do not react well to levo dose your adrenals could bevl the reason.

LindyMc profile image
LindyMc in reply toSleepman

That is very useful. Thank you so much. Gone into the ammunition I am collecting if things do not go to plan.

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