Hi all,
I have had two blood tests on the NHS for thyroid profile tests and neither of them has tested for tRAB.
Is this something they WON'T do, or is it something I need to prompt them to do? Keen to understand other people's experiences with this.
Thanks,
Z
From reading posts and responses here, there does seem to be a tendency to not do TRab (nor TSI) on two grounds:
First, it is obvious that you have Graves disease therefore it is unnecessary.
Second, it costs so we will avoid doing it and just go by TSH (and maybe some other tests).
I argue that it is difficult to be sure someone has Graves without such a test. There are other possible causes of hyperthyroidism such as some multinodular goitres.
I argue that the cost of not doing the right test, then having to re-trace the steps in order to correctly diagnose the issue are far greater than those of a test.
TRab = any TSH receptor antibody - stimulating, neutral or blocking
TSI = only stimulating TSH receptor antibodies
TSI very much preferred, in my book.
If you do not know why they have not run such a test, make sure you bring the issue up. You could always contact the lab before seeing your GP or consultant to check their view.
That's interesting.. I've never actually been tested (or even heard of TSI), including from my private endo's tests....
The hospital specialist should really want to confirm any Graves diagnosis by testing TRab or TSI. We often hear they don’t do this and treat all low TSH as Graves.
I had 1 TRab test many years ago. The hospital since changed its protocol and now uses the TSI. Which I had 2 years ago when initially diagnosed. I’m due a repeat as they were negative.
Very often they are only tested once for diagnosis and not repeated.
But if you don't retest it, how do you know if you have gotten better or worse etc?
You only need to test once to confirm diagnosis. Antibodies rise and fall. They mop up the mess left when your immune system attacks your thyroid. They are not a measure of better or worse.
What really matters is how much thyroid hormone you make and release. Ongoing management can probably quite reasonably be based on thyroid hormone levels and symptoms.
The absolute level of TSI is not seen as important in itself.
Imagine you are producing enough TSI to stimulate every single TSH receptor. Now double the amount of TSI. I don't think it would make any difference as every TSH receptor is already stimulated.
However, it is possible that much reduced TSI would indicate, for example, that dose on an anti-thyroid medicine could be reduced. But then I suspect the frequency of testing required might seem too great to those in charge.
As well as being used to diagnose Graves, the level of TRab is useful to gauge likelihood of remission. After 3 years of treatment my TRab were still high at 15 and my endo told me that if over 5, I was very likely to relapse if treatment was stopped and so I continue on B and R. TRab however does not differentiate between blocking or stimulating antibodies, I suspect I am moving towards blocking dominating but a TSI test which might confirm this has never been mentioned by the endo. Maybe a conversation for the future !
Previous post shows you have high Trab antibodies
They won’t retest
Did you get vitamin D, folate, ferritin and B12 tested
Hi SlowDragon - Thanks for stopping by (as always).
My latest tests show the following red flags:
- TSH Serum - 5.94 (was <0.01 in all my previous tests, EXCEPT for my last test in Nov 2020 where it started creeping up to 0.14 - so this is a BIG jump and now ABOVE RANGE)
- Vitamin D - PENDING (the latest test hasn't been processed by the lab yet, but it WAS 115 as of my last test in Nov 2020)
- Vitamin B12 - 902 (never had the test before, so no previous benchmarks to compare to)
- Folate - do you mean "Red Cell Folate", or "Serum Folate"?
- Ferritin - 274 (was 490 in Jul 2020, then crept down to 396 in Nov 2020)
Without sounding like I am expecting anyone to analyse my data, IF it helps, I keep a track of my blood test results and log them here - docs.google.com/spreadsheet...
So your tests from Nov 2020 showed your levels had dropped significantly
TSH 0.14
TSH is always slower to respond
Ft4 19.5 (12-22)
Ft3 4.1 (3.1-6.8)
Ft4 75% through range
Ft3 only 27% through range
Helpful calculator for working out percentage through range
Ft3 already too low
Was Carbimazole/propranolol reduced after these results
Tests this August show you are now very hypothyroid
TSH over range and Ft4 rock bottom
Can't believe I'm now hypo. I knew this would happen :(. The strange thing is that my symptoms of er the last month or two have been reminiscent of my symptoms back in early 2020 (heart palpitations, weight loss, bulging eyes) and I haven't experienced any noticeable "hypo" symptoms as I understand them (at least no tiredness). All messed up! I have been finding it exceptionally difficult to focus though.
Carbimazole wasn't reduced since the last doc appt in Nov 2020. I was told to stay steady on the 20mg daily dose (1x 10mg in the AM and 1x in the PM), along with the Levo (once daily in the AM).
The view was to review in August (i.e. now), but have had to revert to NHS as cannot afford the private endo I was seeing anymore as my circumstances have changed.
So I should CEASE the Carbimazole with immediate effect?
PS. I am awaiting NHS doc referral and appt to go through my latest test results etc
Imagine you feel pretty rubbish with these results?
Are you currently taking propranolol too
Carbimazole has to be reduced slowly
Your GP or NHS endocrinologist should be advising
You need to get TSH, Ft4 and ft3 tested
Suggest you test via Medichecks or Blue horizon if you need/want to test TPO and TG antibodies too
What vitamin supplements are you currently taking
Or Monitor My Health if only testing TSH, Ft4 and ft3
Always test as early as possible in morning before eating or drinking anything other than water.
This gives highest TSH
PurpleNails or others with Graves’ disease may pop along and comment
Hi SlowDragon - yeah, I am taking 40mg of propranolol 2/3 times a day, since June this year when my symptoms worsened.
Other vitamins I take:
- B12 oral spray (now stopped)
- Researched Supplements (Energy Multiplex)
- Ashwaghanda
- Vit C
- Turmeric oral spray
I will look into Medichecks and/or Blue Horizon for Hashimoto markers testing, and Monitor My Health for general thyroid markers (TSH, Ft3, FT4), although I presume NHS will cover these off with their tests - but surprising they didn't test for FT3 this time around!
You only need do do
Medichecks or
Blue horizon
or
Monitor My Health
Medichecks includes both Hashimoto’s antibodies, TSH, Ft4 and Ft3 plus vitamin D, folate, ferritin and Active B12
Blue Horizon is same but also has cortisol test included and is Serum B12, not active B12
Monitor my health is the cheapest, 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...
NHS rarely tests Ft3.
NHS Never tests TG antibodies unless TPO antibodies are high
Link about thyroid blood tests
thyroiduk.org/getting-a-dia...
Link about Hashimoto’s
thyroiduk.org/hypothyroid-b...
List of hypothyroid symptoms
On your spreadsheet the results show the above range TSH & same date FT4 of 13.9.
The NSH Lab range may be different to previous private lab tests you had but if they are the same 12 - 22 then it is very low, 19% of range. Your FT3 wasn’t tested.
If it was different range is might not be so low. For example my last FT4 results was similar but range was different
FT4 13.3 (8 - 21) So 40% through range.
Contact your specialist and explain as your TSH is over range & FT4 much lower in range shouldn’t your dose be reduced. I would suggest by half & then retest in 6 weeks.
Was 20mg your starting dose? How long have been taking.
Doctors view hyperthyroid levels as dangerous but are not very concerned with low end levels. In fact I think they prefer it as then there’s a larger “safety net” should the levels rise, but your symptoms may not be preferable to you.
Propranolol has also has a mild antithyroid affect. Do not stop abruptly always reduce down very slowly. I was not advised of this and suffered terrible migraines and had to resume it.
Yes….I was on propranolol (with Hashimoto’s) almost 20 years
Could only get off it once I had gone strictly gluten free
Took approx 6 months to ween very slowly off propranolol by reducing 5mg every 4-6 weeks
Last 5mg was hardest to cut…..once week…wait a week….then twice week etc
Was on 40mg 3x per day. Have reduced very slowly. For a while I have been on 10mg 2x seem very sensitive to it & start to feel it I take late.
On the month I stopped it & was ill with constant migraine & my FT3 spiked disproportionately high so for now I’m sticking where it is.
PurpleNails SlowDragon - GP just called me back and advised that I reduce my Carb dosage by 25pc. So instead of 40mg daily, I should reduce to 30mg. 20mg in the AM and a half tablet (10mg) in the PM.
For reference I've been on 40mg Carbimazole for about a year now.
GP said I can retest bloods in 4 weeks and at that time I will push for FT3 to be included also.
Yes, my FT4 and TSH levels are worrying.
20mg x2 daily is a usual starting dose but it is very unusual to be taking that level of dose for a year. I’m very surprised you are not more hypo.
Testing in 4 weeks is all good but then you must be tested again in another 4 or 6 weeks. 6 weekly testing is standard as the carbimazole alters production of new hormone. The continuous level (ie what the levels will likely stay at) wouldn’t be known until up to 8 weeks later as the body uses the existing levels up and the new levels become apparent.
Specialist usually manage this & not GPs. Your GP Is being cautious only reducing by 25%, allowing a fraction rise. Testing too soon will not truly reflect the adjustment.
I’m very surprised you are not more hypo.
I think OP is on block and replace ?
Hi tattybogle - yes, I am on block and replace for about one year now.
100mg levothryroxine
40mg Carbimazole
Which probably expeplaiba why I'm not more hypo PurpleNails
Thanks tattybogle I Didn’t realise. That explains it. Im less familiar on how to manage B&R. I understand that concept is to totally block then replace what’s needed. Don’t know how adjustments and ultimately coming off is managed. Wouldn’t an increase in levo ie the replace part be simpler that allowing the block. Maybe it is done by lowering carbimazole then lowering levo In small adjustments . You will need to be tested must more frequently.
This is what I'm scared of. Maybe only my private endo would be able to advise here as I don't know how familiar with "block & replace" NHS doctors are, as it is not the orthodox technique as far as I know...
Have you had TPO and TG antibodies tested for Hashimoto’s too?
Some patients can have Hashimoto’s and Graves’ disease
Low white blood count
nhs.uk/conditions/low-white...
SlowDragon - I haven't had any specific tests since the Nov 2020 set. These latest ones were my general "check-in" if you will.
I hope that the doc's next step will be to test for Hashimoto's markers, such as TPO and TG based on the latest bloodwork.
GP should be contacting you ….especially with low white blood count and on Carbimazole
Chase up an appointment ASAP
On Carbimazole blood tests should be far more frequent than every 8 months
So you are on Block and Replace. 30 mg. Carbimazole. How much Levo ? You are now hypo and perhaps you need an increase. I have needed about 8 adjustments over the last 4 years. Currently 7.5 mg of C and 75 mcg. L. My GP does blood tests whenever I feel I need a change but endo sanctions any alterations to my dose. You cannot just stop your medication but you need closer monitoring.
Surely on block and replace Zudukk should be being regularly monitored by endocrinologist and only testing thyroid levels once in 8 months seems like very very poor care
November results already showed significant drop in Ft4 and Ft3 yet no dose adjustment then
Yes poor monitoring but looking over past posts since being diagnosed about a year ago zudukk you have seen a private endo then sought a second opinion but now seem to be under NHS so who is overseeing your treatment at the moment ? A GP is not qualified to treat Graves.
My circumstances changed during COVID and I could no longer afford the private endo I'm afraid.
Seeing a GP in the UK is a customary first step to triage a patient and organise an onward referral.
GP is recommending these things in the interim before I am officially referred to and seen by an NHS endo, which apparently can take up to 3 months because of the pandemic.
So maybe NHS GPs are extending their service Remit because they know the waiting times for specialists are so long, I'm not sure...
GPs are easily able to order thyroid function test [TSH FT4 & FT3]. The lab might automatically cancel. FT4 & FT3 If TSH in range. If the GP is currently in charge of your care while waiting until specialist can see you they should be doing so.
GPs usually leave testing of antibodies to the specialist. Ask your GP to liaise with specialist in advance & see if the blood request form can be sent now instead of waiting. This can be done before any appointment in place.
This was done when I was diagnosed (which was pre covid). I was sent a pre clinic blood test form from the specialist team before my first appointment antibodies were done later.
I think it included Tissue Transglutaminase, cortisol, fasting glucose, liver & bone profile.
Just be clear on what’s expected to be done & by which doctor & when. I was supposed to have the pre clinic test and then the team intended to book me then, but the practice staff said there was no point having test until appointment was through, so refused to do it delaying things longer than they should have been.
Waiting times BEFORE covid were also 3 months ! Nothing to stop your GP contacting an Endo for advice while you are waiting . Suggest you post your results when next tested in about 6 weeks as many on this forum will probably be more knowledgeable than your GP.
Can I also ask, given the bloodwork results, shouldn't I just completely CEASE taking the Carbimazole? If I'm completely underactive now, then shouldn't it be the first thing I do?
It may not be wise to cease carbimazole. If you were you would have to cease carbimazole you would have levo too or your levels could start to rise quickly & unpredictably. Doing things slowly is much safer.
Stopping & starting or making many adjustments quickly to medications is never a good idea when it come to thyroid you need to give it time. They are planning to testing quite soon, they will likely agree a further adjustment if your levels are still low.
The problem is you do not know WHY you are underactive. Are you in Remission/ have your AB’s changed from Stimulating to Blocking/ have you the AB’s for Hashis/are you overmedicated ? ( my guess and easy to check is the latter ) If on a low dose of Carb. stopping to see what happens would be reasonable but on your high dose there is a good chance you will relapse and be back to square one. SLOW AND STEADY might be better with small changes and full testing, an increase in Levo then slow reduction of Carb. to have a clearer picture. Elaine Moore advised me to look for an increase in my TSH when on a low dose of meds as an indication I might be near remission. You may find the following of interest eje.bioscientifica.com/view...
NHS thyroid blood test inconclusive 
Nhs thyroid test results 
NHS T3 Blood Testing.
Annual NHS Blood Test
Recent nhs blood tests 
