Latest test results

[Pigsmayfly]

hello, I have Graves have been on 5mg of carbimazole for 9 years, grateful for thoughts on my latest test results

TSH - 2.85 ( 0.38-5.33)

FT3 - 4.9 (3.8-6)

FT4 - 10.9 (8-18.00)

[PurpleNails Administrator]

Welcome to forum

How do you feel?

FT4: 10.9 pmol/l (Range 8 - 18) 29.00%

FT3: 4.9 pmol/l (Range 3.8 - 6) 50.00%

Your FT4 is on lower side. The FT3 is mid range most say symptoms ar most affected by FT3 as it’s the active thyroid hormone.

If well leave be. If having hypo symptoms then it might be time to reduce / stop carbimazole. Dr view 5mg as lowest possible dose, but sometimes taking half a pill or dose every other day works well.

Was your Graves confirmed with positive TRab or TSI antibodies earlier on? Have antibodies been retested to see if remission a promising prospect.

10 years is a long time on carbimazole, most drs guide toward definitive treatment or trial stops in medication. Have you taken continuously?

[Pigsmayfly in reply to PurpleNails]

hi Purple Nails

Many thanks for your reply

Started on PTU, had bad liver test results so changed to carbimazole 9 years ago, yes, have taken continuously.

Was diagnosed with Graves in ICU

Negative TSH receptor Ab TPOab - 368

TSH under 0.02

T4 over 100

T3 - 33.9

[Pigsmayfly in reply to Pigsmayfly]

Refused RI as thought long term carb the safest option

[Pigsmayfly in reply to Pigsmayfly]

Diagnosed 2016 taken in to ICU unconscious put into induced coma, with tracheotomy, tube fed was there for 8 weeks. My family were told I would not survive but here i am up and running, if feeling a little hypo, consultant will not sanction any drop in carb

[PurpleNails Administrator in reply to Pigsmayfly]

They were extremely high thyroid levels at time but looks like drs assumed Graves because of levels, not based on evidence of antibodies. Did you become ill with taking PTU? Looks like TPO was positive.

[Pigsmayfly in reply to PurpleNails]

Yes, became ill with PTU, bad virtigo and sickness

[SlowDragon Administrator]

suggest you retest thyroid antibodies and very importantly vitamin levels too

Have you ever had high TsI or Trab antibodies?

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Also both TPO and TG thyroid antibodies tested at least once

High TPO antibodies suggests Hashimoto’s

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

Low vitamin levels are extremely common when hypothyroid, especially with any autoimmune thyroid disease …..Graves or Hashimoto’s

Lower vitamin levels more common as we get older

For good conversion of Ft4 (levothyroxine) to Ft3 (active hormone) we must maintain GOOD vitamin levels

What vitamin supplements are you taking

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test

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

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

Post all about what time of day to test

healthunlocked.com/thyroidu...

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/testing/thyro...

Symptoms of hypothyroidism

thyroiduk.org/signs-and-sym...

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

[Pigsmayfly in reply to SlowDragon]

Hi Slow Dragon-many thanks for your reply

Initial TPO states - Negative TSH receptor Ab TPOab - 368

Would this suggest Hashimoto’s?

Latest test results were done by NHS yesterday at 9:30 am no food, only water

[Pigsmayfly in reply to Pigsmayfly]

i take vit B complex in liquid form

Vit D3

[SlowDragon Administrator in reply to Pigsmayfly]

Yes suggests Hashimoto’s

Hashimoto’s often starts with transient hyperthyroid results and symptoms

But not usually lasting 9 years!

Did you stop vitamin B complex 5-7 days before test as contains biotin

[Pigsmayfly in reply to SlowDragon]

Just checked the B complex bottle does not list Biotin or B7 thank you for the tip

Im concerned with being diagnosed with Graves in ICU when it could be Hashimoto’s 👍

[tattybogle]

apparently is it possible to have graves without positive TSH receptor antibodies, very unusual , but possible .

endocrine-abstracts.org/ea/... Hyperthyroid Graves’ disease without detectable thyrotropin receptor antibodies

academic.oup.com/jcem/artic... Hyperthyroid Graves' disease without detectable thyrotropin receptor antibodies

[Pigsmayfly in reply to tattybogle]

Hi Tattybogle

Many thanks for the paper

Looks like I maybe very rare with my Graves !!

[tattybogle in reply to Pigsmayfly]

Do you know if they gave you any sort of thyroid uptake scan ?

These articles are saying they confirmed graves by what they saw on uptake scan

first paper ... "Thyroid scintigraphy shows an enlarged gland with homogeneous uptake of radiotracer in both lobes".

second paper ..."and who had increased thyroid radioiodine uptake values but lacked TSH receptor antibodies"

I don't know much about uptake scans , purplenails understands them , ....but as far as i understand it , in hashimoto's the uptake is low , in hyper as a result of 'hot' nodules the uptake is more where the nodules are , and with graves the uptake is increased more evenly all over .the thyroid .. or something like that,

[Pigsmayfly in reply to tattybogle]

Not sure tattybogle i did have so many scans thyroid and full body was 1-1 care with different teams arriving every day and for first 6 weeks was in a coma, so I just dont know

I should say that since starting carbimazole all my tests have been in range

I also have TED thats burnt out and no longer active

[tattybogle in reply to Pigsmayfly]

ok , lol being in a coma is a good enough excuse for not knowing

[Pigsmayfly in reply to tattybogle]

🥰

[PurpleNails Administrator in reply to Pigsmayfly]

Previously having TED would convince most doctors you have Graves. I’m have hyper from a nodule and negative for antibodies, specialist said I couldn’t have TED as I didn’t have right sort of hyper. Orbital MRI differs

[Pigsmayfly in reply to PurpleNails]

I have been wondering for weeks about hashimoto's

As we are all individuals anything could happen !! X

[pennyannie]

Hello Pigsmayfly and welcome to the forum :

Considering where you are now -

your TSH has recovered and doesn't appear to be constrained by any antibodies and your T3 and T4 look a little low in the ranges to maintain good health and well being going forward.

Strange that you had positive over range TPO antibodies at diagnosis - rather than TRab -

but with a diagnosis made for Graves Disease - rather than Hashimoto's -

and with Thyroid Eye Disease this can occur independently of both Hashimoto's and Graves .

I guess there are exceptions to every rule .

You might like the most recent research we have on Graves Disease :

pubmed.ncbi.nlm.nih.gov/338...

ncbi.nlm.nih.gov/pubmed/306...

and the most well rounded of all I researched is that of Elaine Moore's books and website - elaine-moore.com

[Pigsmayfly in reply to pennyannie]

many thanks pennyannie x

[Pigsmayfly]

Many thanks all you lovely people, lots of food for thought I hope you all have a really good day XX