Auto-immune hypothyroidism or not?: Good morning... - Thyroid UK

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Auto-immune hypothyroidism or not?

RubyTuesday profile image
23 Replies

Good morning all,

How can I find out what kind of hypothyroidism I have, please? There is hypothyroidism in my family, but I was told by an alternative therapist many years ago that I have an autoimmune type condition and would like to know via blood test, if that is possible? Apologies if this has been asked many times in the past, but the search engine does not address my question.

Many thanks.

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RubyTuesday
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23 Replies
greygoose profile image
greygoose

You need your TPO antibodies and Tg antibodies tested. But, you might need to get the TgAB done privately because the NHS will only test TPOab.

If your antibodies are over range, then you have Autoimmune Thyroiditis - aka Hashi's. But, one negative results does not prove you don't have it because antibodies fluctuate all the time. Also, some Hashi's people never have over-range antibodies and are diagnosed by ultrasound. :)

RubyTuesday profile image
RubyTuesday in reply to greygoose

Thank you very much.

greygoose profile image
greygoose in reply to RubyTuesday

You're welcome. :)

SlowDragon profile image
SlowDragonAdministrator

Vast majority of primary hypothyroidism is autoimmune….however

Looking at your profile and previous posts

You had RTA …..this can cause hypothyroidism

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis) usually diagnosed by high 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.

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

NHS only tests TG antibodies if TPO antibodies are high

Significant minority of Hashimoto’s patients only have high TG antibodies

Recommended on here that all thyroid blood tests early morning, ideally before 9am last dose levothyroxine 24 hours before test

On T3 or NDT - day before test split daily dose into 3 smaller doses, spread through the day at approx 8 hour intervals, taking last 1/3rd of daily dose 8-12 hours before test

List of private testing options and money off codes

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

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

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

bluehorizonbloodtests.co.uk...

Link about thyroid blood tests

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

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

List of hypothyroid symptoms

thyroiduk.org/if-you-are-un...

20% of Hashimoto's patients never have raised antibodies

So if both antibodies are negative, an ultrasound scan of thyroid can be helpful

healthunlocked.com/thyroidu...

RubyTuesday profile image
RubyTuesday in reply to SlowDragon

That is very helpful, thank you.

PurpleNails profile image
PurpleNailsAdministrator

Most hypothyroidism is due to ‘autoimmune thyroiditis’. Where the immune system is attacking the thyroid causing damage - which lead to less functioning thyroid (under active levels)

It’s known as Hashimoto’s but doctors in UK just treat all under active thyroid the same way. The don’t call it Hashimoto’s - they may use the term autoimmune thyroiditis but the autoimmune element is virtually ignored.

The two antibodies which confirm autoimmune are:

TPOab (Thyroid Peroxidase antibodies)

TGab (Thyroglobulin antibodies)

If positive then it can be certain there is autoimmune present. As levels fluctuate greatly- If negative it doesn’t dis-prove it hasn’t been positive in past or won’t again in future.

Doctor might not agree to test antibodies if you already have diagnosis and treatment for under active levels.

There are private options. thyroiduk.org/help-and-supp...

An advanced thyroid check with eg medichecks would test thyroid function (TSH, FT4 & FT3) antibodies TPO & TG. Main nutrients which should be optimal for replacement thyroixine to work well (folate ferritin vitamin D & B13) and inflammation (CRP)

There are other companies with similar groups of test. The link above includes discount codes.

RubyTuesday profile image
RubyTuesday in reply to PurpleNails

Very helpful, thank you.

RubyTuesday profile image
RubyTuesday in reply to PurpleNails

I have recently experienced inflammatory arthritis, apparently, though not had any arthritis bloods done, per se, but my ferritin is raised at 216 (13-150), CRP 11 (0-15), ESR 37 (0-15). I've never had B13 checked. This does explain why meds aren't doing a lot for me, though.

PurpleNails profile image
PurpleNailsAdministrator in reply to RubyTuesday

Raised ferritin can be a sign of inflammation - 216 (13-150),

CRP 11 (0-15). Thats in range but that’s a higher range then often seen. [eg 0-5 mg/L] is it a different measurement?

ESR 37 (0-15). Is above range but a non specific test. High ESR can be a sign of infection & autoimmune conditions.

If B12, folate & vitamin D low - often are with thyroid issues, the thyroxine won’t convert well in the body and FT3 can be low even if FT4 is at a good level.

Do you have a recent thyroid function? (TSH, FT4 & FT3). Sometimes GP test TSH only. It’s assumed if this pituitary hormone - which signals thyroid to produce new hormone is in range then FT4 & FT3 should also be in range. TSH has a wide range & can be very unreliable.

Do you take T3 (Lio)? As well as levo? What do you currently take? Taking any T3 will lower TSH & makes the TSH particularly unreliable

RubyTuesday profile image
RubyTuesday in reply to PurpleNails

CRP range is 0-15 - my typo! My B12/folate levels are fine at 467 and I take vit D3 supps so this is also ok at 116. Recent thyroid tests show serum free T4 is 25.3, free triiodothyronine 4.4, TSH 1.13 so they will want to reduce the levo - I am currently on 125 mcg. I used to also take T3 but had to stop due to Brexit, as German supplier no longer supplying.

PurpleNails profile image
PurpleNailsAdministrator in reply to RubyTuesday

How long did you take T3?

Did you previously obtain T3 yourself or through private doctor? It is very difficult to obtain via NHS but if you require it clinically and have evidence of that - then an hospital endocrinologist can prescribe it.

Do you have lab reference ranges. Ranges vary between labs.

Your TSH is ok. Has your TSH fluctuated in past?

How do you currently feel? Do you have symptoms?

By most ranges we see your FT4 is slightly over range but your FT3 is low. So It does appear you have conversion issues - which was likely why T3 was prescribed before. Did T3 work well previously?

RubyTuesday profile image
RubyTuesday in reply to PurpleNails

I foolishly came off levo for 3 months, having become disillusioned regarding the efficacy/viability of levo on its own. My body crashed and I have been clawing my way back to some kind of stability ever since the end of last year. I feel I am responsible for my ill health since before Christmas culminating in the past few months sinusitis then swollen left hand followed by bruising of left hand followed by discomfort/pain in left hand and now also in right hand! Hence the CRP and ESR checks, but it has been a long and slow process due to GP systems. A previous GP surgery stopped the liothyronine quite a few years ago - I went in for my usual prescription and was told 'sorry we don't prescribe this any more', so I started to source it myself with my then GP's knowledge. I felt better when taking it and became despondent/low over the years following it being stopped. I struggle with my health/energy levels but feel I need to keep going as I cannot afford to not work. I am officially allowed to retire this year, but cannot afford to, at this point in life. I am trying to find ways to just keep going to be honest; I have bought high dose turmeric to try and deal with the inflammation as I do not want to be on NSAIDs for the rest of my life, I have taken up tai chi, but ideally I would like to go back on T3 - I just don't have enough energy to fight my case!

PurpleNails profile image
PurpleNailsAdministrator in reply to RubyTuesday

I would start a new post specifying that you previously was prescribed T3 but it was withdrawn.

A rough ‘time line’ will help members understand your history.

There are members who can advise you exactly which tests will support your case and can provide you letter templates to pursue your case.

There may be private options members can advise on, do you think that might be an option?

I take a antithyroid for hyper nodule so this is not a situation I have experienced with, only what I’ve read from other members.

RubyTuesday profile image
RubyTuesday in reply to PurpleNails

Thank you, I will endeavour to do that, when I can get my brain in gear to put it down in a time line fashion. Currently my thinking is all over the place and I have to use it for work; by the time I get home my brain is frazzled, lolI appreciate the time and trouble you have taken to explain things for me; take care.

Best wishes.

Juliet

SlowDragon profile image
SlowDragonAdministrator in reply to RubyTuesday

Poor conversion of Ft4 to Ft3 ts common, especially as we get older

Sudden withdrawal of T3 frequently results in vitamin levels crashing

We need GOOD vitamin levels for conversion of Ft4 to Ft3

My B12/folate levels are fine at 467 and I take vit D3 supps so this is also ok at 116.

B12 is too low

No folate result

Private prescription enables access to Thybon Henning 20mcg tablets via specialist U.K. pharmacies at 50p -60p per tablet

Recent thyroid tests show serum free T4 is 25.3, free triiodothyronine 4.4, TSH 1.13

Please add ranges on these

Always test thyroid levels early morning, ideally before 9am and last dose levothyroxine 24 hours before test

Do you always get same brand levothyroxine at each prescription

Many people find different brands are not interchangeable

RubyTuesday profile image
RubyTuesday in reply to SlowDragon

free T4 25.3 (11.1-22), free T3 4.4 (3.1-6.8), TSH 1.13 (0.27-4.2); I always test first thing in the morning before eating anything although I do forget not to take meds, as I pretty much fall out of bed, shower, take meds, prepare for work, rush for the bus! I have had different brands of levo in recent years, but cannot say I notice a difference per se.I used to buy Thybon Henning via their German website; I cannot find specialist U.K. pharmacies that sell TH tablets?

RubyTuesday profile image
RubyTuesday

free T4 25.3 (11.1-22), free T3 4.4 (3.1-6.8), TSH 1.13 (0.27-4.2); I always test first thing in the morning before eating anything although I do forget not to take meds, as I pretty much fall out of bed, shower, take meds, prepare for work, rush for the bus! I have had different brands of levo in recent years, but cannot say I notice a difference per se.I used to buy Thybon Henning via their German website; I cannot find specialist U.K. pharmacies that sell TH tablets?

PurpleNails profile image
PurpleNailsAdministrator in reply to RubyTuesday

If you took your levo just before draw it’s showing a “high” FT4 that will reduce likely into range by afternoon.

Doctors think it’s not relevant but if you had delayed dose & levels within range you’d have stronger argument to leave at current levo dose & not reduce.

Was this reply to slowdragon? As reply had gone to your post. If you reply under their post they will be notified.

SlowDragon

RubyTuesday profile image
RubyTuesday in reply to PurpleNails

Yes, it was! Thanks for highlighting this for me; I obviously pressed the incorrect Reply button.

SlowDragon profile image
SlowDragonAdministrator in reply to RubyTuesday

So night before blood test….put your levothyroxine away in your handbag

A) so you don’t take it on “autopilot “ when wake up

B) you can take it immediately after blood test

So your Ft4 is falsely high …..how high impossible to say

You need folate test result too

T3 on private prescription

Roseway, chemist 4 u and Smartway all can supply

Ring/ email around for best price

thyroiduk.org/if-you-are-hy...

RubyTuesday profile image
RubyTuesday in reply to SlowDragon

Thank you so much; I will make a physical note of all that for future reference :) and I will ask my GP if she can refer me to an Endo/and give me a private prescription in order to purchase the T3 myself, if need be.

SlowDragon profile image
SlowDragonAdministrator in reply to RubyTuesday

Vast majority of endocrinologists are diabetes specialists and useless for thyroid

Very few endocrinologist will prescribe T3….though number is improving as price of T3 on NHS has reduced…..was at its highest £268 per 28 tablets 20mcg

Now £63 per 28 tablets

Still has a way to drop to match Thybon Henning at £14 per 28 tablets

Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors who will prescribe T3

tukadmin@thyroiduk.org

RubyTuesday profile image
RubyTuesday in reply to SlowDragon

Thank you, l will do that right now.

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