Hi,
I had Graves’ disease 20 years ago but after medication it resolved and levels have been fine for over 15 years. I have been feeling unwell recently and checked my recent thyroid results. I was unaware the GP only checked my TSH levels (they were 0.5 so within normal range): Is it worth me paying privately for a full thyroid panel? I just want to rule this out.
If so any recommendations?
I am on other medications which may be causing side effects.
Thank you.
welcome to the forum
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once
Very important to test vitamin D, folate, ferritin and B12 at least once year
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
NHS only tests Thyroglobulin antibodies if TPO are high
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
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
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...
Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee
Only do private testing early Monday or Tuesday morning.
Tips on how to do DIY finger prick test
support.medichecks.com/hc/e...
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before ALL BLOOD TESTS , as biotin can falsely affect test results
Hello Bumble and welcome to the forum :
Well Graves is an Auto Immune Disease that can wax and wane throughout your life :
Were you treated with an Anti Thyroid drug either Carbimazole or Propylthiouracil -PTU - and your thyroid reset itself -
or did you end up having RAI thyroid ablation or a thyroidectomy and now Primary Hypothyroid ?
What medications are you taking ?
Yes - most doctors just run a TSH blood test which as you have Graves is the most unreliable measure of them all as we must be dosed and monitored to optimal levels of T3 and T4 which generally sees the T4 up at around 80% with the T3 tracking just behind at around 75%through its range.
No thyroid hormone replacement works well until your core strength vitamins and minerals are up and maintained at optimal levels so if you are getting tested privately also arrange the ferritin, folate, B12 and vitamin D bio markers.
Thyroid UK - the charity who supports this patient to patient open forum have a page dedicated to Private Blood test companies and then when you have back the results and ranges simply start a new post and you will be talked through what it all means and your best step back to better health if anything is a miss.
Arrange any early morning by 9.00am blood test, ideally on the first few days of the week as then your results should be back before the weekend and not sat siting anywhere over a weekend.
If taking T4 - you need to leave around a 24 hour window from your last dose so we measure what your body is holding rather than that just ingested - similarly stop any supplements a week beforehand - and anything containing biotin as that tends to skew the assays used in the laboratories.
I’m really sorry to hear you think it may be Graves again and to be honest if it were me I would buy a blood test from someone like Medichecks. I was diagnosed with Graves back in 2012 and found it very difficult to get properly tested and I’ve been using their home fingerpick tests ever since.
I get the one that does everything CRP, all the vitamins and minerals you need to keep your thyroid in a good place as well as antibodies plus all T3, T4 and TSH. In the year I was being treated for Graves I never had my T3 tested or my vitamins and minerals which really irritated me no end.
After I started doing my own tests I really enjoyed turning up for my appointment knowing what they were going to say before I got there. In the meant8me I’ll cross my fingers for you that your thyroid is ok.
Hi,
I take a multivitamin with iron. I have recently had my bloods taken and they checked my vit d , folate, iron etc and they were all within normal levels.
I take a lot of medications for severe asthma including biologics and migraine and pain medication.
I was given Carbimazole for 2 years and then tapered off after that my levels apparently returned to normal and have been since. Who knows if they have only tested my TSH since 🙈.
Thank you for such thorough replies I’ll need to digest the information and work out which tests to get. It’s frustrating feeling I can’t get my doctor to do this properly. When I was diagnosed I was really ill in hospital so they ran all the tests. I guess at least they did something properly 
can I ask do you go to a clinic for a blood draw or do a test at home?
You need to actually reply using the reply box within the other persons post - as then they get notified they have a message - and will come back to answer you :
I don't know who you are wanting to reply to -
I choose to use medichecks.com/products/adv... -
and I'll highlight Fruitandnutcase for you :
If you are wanting to also check for Graves Disease - Medichecks also run a venus blood draw for this and have a feeling is the only Private blood test where you can get a TSH thyroid receptor blood test -
medichecks.com/products/tsh...
Thank you
Yes, see the link from pennyannie.
I use the fingerpick option but depending on where you live and how you feel about doing it yourself you can pay a bit more and have someone do the blood draw for you.
I think you have to be aware that what a doctor calls ‘normal’ usually means your result falls somewhere within the range - a range which (to me) is so wide it would be difficult not to fall somewhere within. What you need is to be ‘optimal’ the point within the range where you will feel well. Having results that are are ‘normal’ does not always mean you will feel well.
So always ask to see your results written down along with their lab ranges and I would definitely avoid multivitamins, test regularly and only supplement for an area in which you are low.
Great thank you
Can I ask I’m right in thinking a level of 0.5 TSH is classes as normal (abnormal is 0.4) it seems so borderline doesn’t it? I can’t believe all these years they have only tested my TSH and didn’t have Graves on my records 😭 I just queried this and they have it on my letters and my medication so must be an oversight. It makes me wonder if some of my other health issues are thyroid related. I guess nothing that can be done about that now.
ok ignore me I can now see TSH means nothing. I’ll see if the GP will do a more thorough blood test. If they won’t I’ll pay for the private one 
thanks everyone
Put simply - a TSH of 0.50 will be in most TSH ranges we see - so considered ' normal ' :
Years ago a basic thyroid function test would consist of a TSH +Free T3 + Free T4 -
nowadays to save money the NHS generally, only run a TSH for primary care - and follow a cascade method of testing which means -
If the TSH is out of range - a T4 is run - if the T4 is not in range - a T3 is run and then presume the antibodies are run to confirm why the thyroid hormones are out of range and presents the medical evidence and a diagnose made.
Your Graves may have been just a' blip ' all those years ago, and truth be told, mainstream medical have no answers for this chronic long term multi organ AI disease until such time as your immune system starts attacking your thyroid and or eyes and where there are known guidelines in place to follow.
The most rounded of all I researched as I'm Graves but post RAI thyroid ablation in 2005 is that of Elaine Moore's books and her now archived website :-
web.archive.org/web/2024122...
Even with updated medical records I was referred to as a conundrum as the NHS insist on testing and monitoring on a TSH blood tests which for Graves patients is wrong - and why I now run my own blood tests and monitor and self medicate my own thyroid hormone replacements.
It makes sense to ensure your medical records are accurate and up to date - and it doesn't hurt to talk with your doctor, maybe s/he is an enlightened individual with some knowledge of this poorly understood and badly teated AI disease.
Thyroid levels 
Thyroid levels
Thyroid/IVF
Can anyone help with me with my questions?? How often does Thryroid levels hace to be checked?? 
