Is my thyroid likely to be destroyed after 30 years of autoimmune assault?

[Retteacher]

After a diagnosis of hypothyroid due to autoimmune disease 30 years ago, is my thyroid gland likely to be totally non-functional and how would this be tested? Every time I go into hospital because I am breathless with painful abdominal aching, the doctors look at my suppressed TSH and want to reduce my levothyroxine. The latter is currently 114mcg per diem, slightly reduced because of weight loss from my dosage for 30 years of 125mcg per diem. My Consultant Endocrinologist is supportive and says that my current symptoms are not due to my levothyroxine medication level. He acknowledges like Professor Toft that I am one of those long suffering patients who feel bad if my levothyroxine is reduced below 100mcg to 'correct' the TSH blood test result despite a normal free T3 level. However, the junior hospital doctors and the Endo registrar are less well informed. Last time they totally stopped my levothyroxine for two days until they read letters from my Endocrinologist. I felt the effects about a week later which my husband says is because of the half life of levothyroxine of 7 to 10 days. I don't feel well enough to keep arguing with these young doctors, but wondered if I should challenge them to prove that I have any thyroid function left to stimulate with TSH.

[SlowDragon Administrator]

breathless with painful abdominal aching,

Gut issues often due to poor gut function and gluten intolerance with Hashimoto’s....are you on strictly gluten free diet ?

If not ..get coeliac blood test done BEFORE considering trial on strictly gluten free diet

With Hashimoto’s low vitamin levels are EXTREMELY common, especially if under medicated

What vitamin supplements are you currently taking

When were vitamin levels last tested

Low iron/ferritin can cause breathlessness

Being under medicated for Hashimoto’s, can also cause breathlessness

For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12 at least annually

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 .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

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

Is this how you do your tests?

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

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/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

[Akashrajput in reply to SlowDragon]

Is it possible for a person who is both b12 and iron deficient and Is anemic too To have thyroid problem my neck feels stiff and widen don't know what's wrong and my father has thyroid too

[SlowDragon Administrator in reply to Akashrajput]

Can you get thyroid tested including thyroid antibodies

Come back with new post once you get results

[Akashrajput in reply to SlowDragon]

Yes sir

[radd in reply to Akashrajput]

Akashrajput,

Yes, and often these deficencies/anemias are caused by the years of inadequte thyroid hormone. Put further questions in your own new post for other members input & because you are highjacking this one 😁.

[Akashrajput in reply to radd]

Sorry 😂

[Retteacher in reply to SlowDragon]

Thank you for your response. Yes I religiously follow blood test advice when an outpatient, both NHS and private GP acknowledged results exactly the same.I am also following both a gluten and lactose free diet. One problem is that I have lost weight since I also avoid sugar, so my diet is probably too severe.

[SlowDragon Administrator in reply to Retteacher]

What are your most recent thyroid and vitamin results?

[radd]

Retteacher,

After 30 years it would be a fair assumption but only a scan can offer a definitive result of an atrophied thyroid gland, and the treatment would be the same, thyroid hormone replacement meds still dosed by a TSH level.

Many members including myself have been worn down by the lack of understanding and inflexible approaches to thyroid issues so actually medicate ourselves with sources from abroad, but it is a worrying & lonely journey.

Have you got bloods to share complete with ranges (numbers in brackets)? A doctors or even a supportive Endo’s “normal’ may not be the same as what many members have found necessary for well being. You might find what you are experiencing is either low thyroid hormone levels or nutrient/iron deficiencies caused by the years of autoimmunity.

[tattybogle]

but wondered if I should challenge them to prove that I have any thyroid function left to stimulate with TSH.

Are you are thinking that proving 'no functioning thyroid left' would mean you won the Low TSH argument by saying 'see, i don't need any TSH to stimulate my thyroid cos it's dead already'.. ?

unfortunately that line of thinking wouldn't help... they simply see TSH as a measure of the level of fT4 and fT3 in your blood, and if TSH is lower than 'guidelines/ reference range' advise.. then they (often incorrectly) assume it means you fT4 /fT3 must be too high and therefore need reducing.... it's not what the TSH is doing they are concerned about it 's what it say's about your level of thyroid hormones ei your dose + any of your own remaining production, if you have any.

The thing you have to persuade them is that TSH does not always go along with over range fT4 /3 levels.. and some people need levels of t4/3 that do supress TSH in order to feel well.

TSH in treated people does not respond in the same way as TSH in untreated people... the very act of Taking L T4 as Levo skews the relationship between them.

But in terms of the 'low TSH' fight with unenlightened Endo's /Junior Doctors, it really doesn't matter if you have any functioning thyroid tissue left or not. So no point trying to prove it one way or another.

[tattybogle in reply to tattybogle]

of course you could also just tell them to keep their inexperienced noses out of your thyroid hormone treatment because you already have a consultant Endo monitoring it to his and your satisfaction thankyou. And just make sure you carry copies of his letters to this effect in your handbag everywhere you go.. if it's questioned invite them to consult him for an opinion before fiddling with your dose or causing you further stress by arguing about it, when presumably you are already unwell or else you wouldn't be anywhere near Junior Doctors or Other Endos'.

[tattybogle in reply to tattybogle]

I've just had a thought.... maybe get yourself (loosely ! ) familiar with a recent research paper from diogenes team about the disjoint between TSH levels and fT4/3 levels in Treated patients compared to healthy patients (and keep the title in you handbag too)... and when 'they' give you grief about TSH .. ask them if they are aware of it , and what are their thoughts on it ?..... That should hopefully leave them unable to answer you back . Who knows ...one of them might even get curious and go and read it for themselves.

[pennyannie in reply to tattybogle]

Very likely you'll soon need a Gladstone bag or briefcase !!!!

[tattybogle in reply to pennyannie]

All the better for hitting them on the head with

[tattybogle in reply to pennyannie]

'Accidentally ' of course ! " oops i'm so sorry young man , silly old me. how clumsy i've become "

I can't wait to be old enough to get away with this sort of behaviour.. at the moment i'm still young enough for them to call it 'assault'..... but i'm biding my time

[Retteacher in reply to tattybogle]

Which paper are you referring to? Diogenes has put forward lots of very interesting papers but at first glance I can't see the one you are referencing.

[tattybogle in reply to Retteacher]

i was just being lazy .... if i find it i'll link you to it x

[tattybogle in reply to Retteacher]

I think perhaps i was thinking of this one :-

IS PITUITARY TSH AN ADEQUATE MEASURE OF THYROID HORMONE-CONTROLLED HOMOEOSTASIS DURING THYROXINE TREATMENT ?

in European Journal of Endocrinology

Authors: Rudolf Hoermann, John E M Midgley 1 , Rolf Larisch, and Johannes W Dietrich 1

eje.bioscientifica.com/view...

"DISCUSSION,

In this study, we show that as a result of the attainment of a hypothyroid state, there is an imbalance and disjoint involving peripheral thyroid hormone homoeostasis and the pituitary set point that persists and is particularly evident under T4 monotherapy. ..//...

In untreated euthyroid subjects, the gradient of the correlation line relating FT3 and log TSH is flat, but in subjects treated by T4 monotherapy, the relationship is different in all cases, the gradient increasing with hormone dosage. This suggests that the balanced relationship between the thyroid hormones themselves and TSH, evident in untreated euthyroids, no longer applies and shows that in monotherapy added increments of T4 are progressively more effective in suppressing TSH production, but simultaneously less effective in restoring FT3. Obviously, this is a consequence of the decreasing ability of thyroid homoeostasis to maintain the normal interrelationships between T3, T4 and TSH...//..

Hence, the results indicate that the observed disjoint between the thyroid/pituitary FT4–TSH feedback mechanism and T3 production noted in hypothyroidism (whether inadequately or untreated) is not fully restored even when sufficient T4 is given to regain an apparently euthyroid state. In several cases, this results in a classification mismatch, for example placing ∼10% of patients on moderate T4 doses that are judged euthyroid according to their TSH measurements below the FT3 reference range. Higher l-T4 doses maintained FT3 within its reference limits, though frequently only in conjunction with suppressed TSH. ..//..

The divergence in the central response from the peripheral equilibrium may explain the observed phenomenon that FT3 serum levels remain disproportionally low even when a supposedly normal TSH has been achieved by means of exogenous l-T4 administration. This means that the thyroid status and dose adequacy of T4 substitution cannot readily be defined by the putative gold standard TSH in these conditions because TSH concentrations within the accepted reference range may not invariably signal optimum concentrations of the peripherally active hormone FT3.

..//..

In conclusion, our data suggest that, in order to fully understand the implications of T4 monotherapy in the hypothyroid patient, the normalisation of T3 production for maintenance of the metabolic processes should be considered to be equally as relevant as the control of the mechanisms of T4–TSH feedback that currently dominate functional diagnostic procedures. The two cannot be regarded as equivalent owing to their treatment-related disparity of response. This challenges the role of TSH as an exclusive standard in assessing dose adequacy in thyroid hormone replacement and invites further study."

.....But the full version above is a bit heavy going to say the least .... i think i've seen it discussed more simply (with pictures ) somewhere in here :- thyroidpatients.ca/home/sit... .... but of course i can't remember which of the many articles it was discussed in...it's mentioned in a lot of them.

[Retteacher in reply to tattybogle]

Thank you very much. A very interesting paper and a helpful response.