Odd test result ?

[sheigra]

Hi, I've been on 175 mcg Levothyroxine for years after being treated with combination for Graves and going underactive. Over the last few months have been feeling very unwell and felt it was related to thyroid. Got lab results back yesterday- TSH - 8.28 T4F- 0.47 T3F-0.54 also anti thyrogobulin of 2270 and the anti peroxidase of 159 - this was on taking no levothyroxine for the last 3 weeks! Unfortunately it was a young locum whom I saw and she wasn't sure what to do apart from order more tests in a month. Anyone else had similar? TIA

[tattybogle]

well that is what would be expected if you took no levo for 3 weeks... TSH will go up fT4 will fall. Why no levo for 3 weeks ?

[greygoose]

How was your Graves diagnosed? You have very high antibodies for Hashi's - Autoimmune Thyroiditis - so is it possible that you never had Graves, but had Hashi's all the time? It's a common mistake that doctors make.

Why did you stop your levo for three weeks? You really need to go back on it ASAP, not faff around for another month.

[sheigra in reply to greygoose]

Sorry - more info - was diagnosed by Prof. Toft in Edinburg h with Graves Disease approx 18 years ago - treated with combination of Carbimazole and Levothyroxine til stabilized underactive - then on a dose of 175mcg since then. Was on lithium for chronic cluster headaches for over20 years and stopped this treatment 7 months ago via neurologist. 5 months ago started Methotrexate injections for PA. Rheumatologist ordered bloods 3 weeks ago and my THS was <0.01 and told me to see GP which I did next day - she told me to stop taking Levothyroxine until I got full bloods through - Hence no meds for 3 weeks..... Brand is Eutirox by Merck - Does this make things clearer? Thanks for your responses X

[greygoose in reply to sheigra]

Doesn't matter who diagnosed it, the question is: how was it diagnosed? Did they do antibody testing? Because I'm questioning, based on those blood test results, if you ever really had Graves.

Those antibody test results are saying you have Hashi's. And, whilst it's possible to have Graves and Hashi's at the same time, it's rare. And if they never tested the Graves antibodies, they wouldn't know. Hashi's starts out with a 'hyper' phase, but it's only temporary. However, doctors are so panicked by a suppressed TSH that they immediately jump to conclusion and stick the patient on anti-thyroid drugs without doing the proper testing. It's sloppy doctoring. But, it happens all the time.

What's more, your GP is a bit of a wally. Telling you to stop levo and then testing after only three weeks is not going to give you any accurate information. Even so, it's clear that you need to go back onto levo pretty quickly, as you are very hypo and likely to become more so as the levo clears your system.

[sheigra in reply to greygoose]

Hi, that's quite possible re Grave diagnosis - perhaps it was the easiest as both my mother and sister have it and were his patients too? Who knows? I just know I've been feeling awful and asking for an endocrine appt for years now. The autoimmune thing sound about right too as I'm currently being tested for all sorts by the rheumatologist. Thanks for your help. I might go back on by old dose until GP is back from her hols- X

[greygoose in reply to sheigra]

I think that would be a good idea, yes.

[pennyannie in reply to sheigra]

So you never had RAI thyroid ablation ?

[sheigra in reply to pennyannie]

No, my Mum did but he used both Carbimazole and Thyroxine at the same time on me until I went underactive.

[pennyannie in reply to sheigra]

This treatment is called Block and Replace :

Whilst the AT drug blocks your levels from rising any further the measured replacement dose of T4 is meant to keep your levels from falling too low and off set some of the disabling symptoms of hypothyroid.

Prof. Toft in his retirement year from the NHS in 2017 wrote a very interesting article: :- Thyroid Hormone Replacement - A Counterblast to Guidelines : which is on this website somewhere : and it appears he has done a " U " turn and not suggesting either a thyroidectomy or RAI for Graves patients.

I had RAI in 2005 for Graves in 2005 at age 58 and now manage lingering Graves, thyroid eye disease - caused by the RAI - and hypothyroidism and deeply regret my lack of treatment options having been told at my first hospital appointment I was to have RAI the following year, though well on the AT drug.

There is a genetic predisposition to Graves, but interesting to see that now Hashimoto's has raised it's ugly head.

The good news is that Hashimoto's dies with the gland, whilst Graves is for life and multi organ.

[pennyannie]

Hello Sheigra and welcome to the forum :

It would help if you gave forum members more details of diagnosis, treatment and current medications and as I understand things these anti bodies look to positive for Hashimoto's which is an autoimmune disease that only attacks the thyroid,

I do know that the thyroid can take years to be fully disabled and that the RAI measure - if that was your treatment - not as accurate as one might think.

[SlowDragon Administrator]

If you don’t take levothyroxine for 3 weeks that’s exactly what you would expect blood test to show

Why on earth did you stop taking your levothyroxine

Lucky not to be hospitalised

Bloods should ONLY be tested after minimum 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 at each prescription

[sheigra in reply to SlowDragon]

Hi Slow Dragon please see above post with more info - GP told me not to take any. Just feeling really wretched.

[SlowDragon Administrator in reply to sheigra]

So under Prof Toft you were on “Block (with Carbimazole) and replace (with levothyroxine)”

You possibly just had difficult to manage Hashimoto’s

Or you had Graves and Hashimoto’s together

Can you look at historical blood test results

See if you had thyroid antibodies tested

TSI or Trab antibodies tested for Graves’ disease

TPO or TG antibodies for Hashimoto’s (can also be mildly raised with Graves’ disease)

Were you on lithium at that point when you saw Prof Toft (he’s now retired )

Lithium causes hypothyroidism…..so can see why your GP was thinking perhaps things have changed since stopping lithium

But just testing TSH is useless

Never agree to dose reduction based just on TSH

Likely you either didn’t need dose reduction at all

Or possibly needed SMALL dose reduction in levothyroxine having stopped lithium

You’re now extremely hypothyroid

[sheigra in reply to SlowDragon]

Sorry slow Dragon, I don't have historical bloods. Yes I was on lithium at the time I started having wild hyperthyroid symptoms. For many years I was seen at the Endo outpatients until about 7 or 8 years ago when they felt I was stable enough to be managed to be managed by my GP. Yes Tony Toft was a gem and when he retired I moved to Mr Walker. I'm not sure why the rheumatologist only tested the TSH - I'm now more worried about the antibody numbers as they seem rather high? It's a bit difficult as I'm up a mountain in rural Spain and most everyone is on their annual holidays at the moment. Thank you X

[sheigra in reply to sheigra]

Current medication:Citalopram 40mg

Naxopren1000mg

Leflunomide 20mg

Topiramate100mg

Verapamil 600mg

Sumatriptan 6mg injections

[SlowDragon Administrator in reply to sheigra]

Migraine is common hypothyroid symptom

Did you get FULL thyroid test since stopping lithium

If not, get FULL thyroid and vitamin testing done after 6-8 weeks on constant unchanging dose and brand levothyroxine

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

Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially after being hypothyroid from levothyroxine withdrawal

Low iron/ferritin causes breathlessness and chest tightness

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 all relevant vitamins

List of private testing options

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...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

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

Come back with new post once you get results

[SlowDragon Administrator in reply to sheigra]

Antibodies rise as TSH goes up so hardly surprised they have shot up

Many, many people on levothyroxine have very low TSH. It doesn’t necessarily mean you’re over medicated

Just testing TSH tells you nothing

ALWAYS test thyroid levels as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Full test requires TSH, Ft4 and Ft3 plus vitamin D, folate, ferritin and B12

If you’re Ft3 is not over range you’re not over medicated

How did you feel before GP inappropriately stopped levothyroxine

Presumably you have some levothyroxine with you

Suggest you get back on 100mcg levothyroxine initially

Assuming ok, increase to 150mcg and get retested in 6-8 weeks

[sheigra in reply to SlowDragon]

Thanks I'll do that, I felt awful for a few months before, very dry hair and nails splitting etc. Exhausted - sleeping 10/12 hours a day big bags under my eyes, weight gain, just awful plus I feel/felt as if I have something stuck in my throat, Doc checked and said all was ok. Still feel just as bad. I'll go and find my thyroxine X

[SlowDragon Administrator in reply to sheigra]

Which brand of levothyroxine have you got Do you always get same brand levothyroxine at each prescription

[sheigra in reply to SlowDragon]

I have Eutirox by Merck and always the same brand....