I have been on T3 only for many years, I do not see an endocrinologist these days just my GP. Last year the GP I asked to do my T3 blood test was told by the lab that they would not test T3. Speaking to another of our GPs bout it recently I asked again about T3 blood testing and got told they don't do it.
Surely if someone is taking T3 it should be tested?
You would think so wouldn't you, but increasingly common that they won't, even if prescribed T3.
Vast majority of patients are forced to test privately
thyroiduk.org.uk/tuk/testin...
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Testing on T3, make sure to take last dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test
Is this how you do your tests?
Presumably you have Hashimoto's as can see you also have psoriasis
Do you regularly test vitamin D, folate, ferritin and B12
Thanks for your reply SlowDragon. I have done two Medichecks finger prick tests. Unfortunately even though I sat in a bath of very hot water with fingers in a boel of even hotter water, I could not provide sufficient blood.
As for vitamin tests, those are done about every year, GP seems happy with them but I supliment butstopped b12 for four months to get that tested.
Is it written on the blood test request form "Patient takes T3 only, FT3 test is therefore required" or similar? Your GP should make sure this is made clear. If the lab assumes that you are on Levo they won't test FT3, but the results you get for TSH and FT4 should surely raise a red flag. The hospital lab that.does my surgery's tests includes FT3 test if TSH is suppressed.
SeasideSusie, my GP spoke to the lab on the phone on the day of my blood test. He explained I was on T3 only but they still said no.
That's crazy. How on earth are you supposed to be monitored? Presumably your T3 was initiated by an endo, so surely the endo knows the need to test T3.
Common sense and decency no longer seem to the fore. How can they possibly justify a decision which now leaves you in charge of a previously established area your healthcare....not because you choose to (as I have done) but because that responsibility has been thrust upon you.
At the beginning of this year my GP was told by "those in high places" that FT3 testing was no longer permitted - for various reasons (e.g. difficult finger prick draw) not everyone can, or wishes, to test privately.
Is there any other illness/affliction/addiction that is treated with such apparent contempt.....I doubt it!
It is unethical.
The whole T3 issue seems to have "gone to hell in a handcart".
Cross your fingers and contact your MP!!
Good luck
DD
Yesterday I went for blood tests. My GP has to hand write T3 on the printed form as only TSH and T4 are printed. I’m on T3 medication and recently it has been agreed that the NHS will prescribe it for me after going private initially.
I was questioned at the phlebotomists about the T3. I explained. Then when my results came back the T3 wasn’t done. I phoned pathology at the hospital. They said T3 request wasn’t on form. I explained again. They then agreed to do it. This is the second time this has happened recently.
There is definitely something going on with T3 testing by labs
What I’m not sure??
I will speak with my GP to see if it can be printed on somehow.
How on earth can this be right. If you’re on T3 medication you need to keep a track of it.
NHS don't want to offer routine testing of FT3 as it will show the vast numbers of patients who remain hypothyroid with low FT3 due to inadequate doses of Levothyroxine or poor conversion problem
NHS don't want to offer routine testing of FT3 as it will show the vast numbers of patients who remain hypothyroid with low FT3 due to inadequate doses of Levothyroxine or poor conversion problem
I'm sure you're right SlowDragon but I wonder how many doctors/endos even know about conversion.
Way back in 2002 when I saw the pig of an endo, he reduced my Levo because my TSH was suppressed, FT4 slightly over range and FT3 mid-range. He managed to get my TSH to scrape into range at 0.4, my FT4 ended up at 29% through range and my FT3 was 2.8 (2.8-7.1). He was so happy, I was so ill but it didn't matter that my FT3 was more or less non-existent. I'm convinced he knew nothing about it (nor did I back then!) and totally ignored my FT3 level. That's when I ditched the endo with my GP's blessing and she increased my Levo but even she was ignorant about T3.
Similar experience...when I finally got to a UK centre of excellence on Thyroid (at my own insistence of a "second opinion") ....by then I was virtually immobile and often in wheelchair and on only 88mcg Levothyroxine......and finally FT3 was tested it was well below range ....but TSH was "perfect" in previous endocrinologist opinion.
Obviously they were completely unaware of gluten intolerance back then, (though I was tested for coeliac) and 20 years ago there was no knowledge of significance of DIO2 gene variation
Just picking up on your point about a UK centre of excellence for thyroid, Slowdragon. Where is this and how do I get referred?
a couple of years ago, i askedd the nurse to include a t3 test when she took bloods for my hypothyroidism. she said "what's t3?" - however she did request it and it was done. since last year however no matter if t3 is requested, the lab refuse to do it, even though i am self medicating on thiroyd
I have a blood test tomorrow for adrenals and have asked for t3 as well , had to almost hold the pen in her hand to request t3 which the Endio finally did but said l doubt the lab will do it surely the labs should not override an Endio or are they more qualified these days !
I intend to write to mp if they don't do it, not that he will care .
Have a great day all 😉
Not worth the fight, get FULL Thyroid and vitamin testing privately
Wish I had done that decades ago
Rosebank, good idea. I think I will try to find out the contacts for the path lab, it's not on-line. I will try and contact them and if that doesn't work I will contact my MP.
My gp flatly refused to test for T3
It’s crazy
My FT4 and TSH levels have actually been so called normal since 2010 when the surgery first started doing annual well woman tests
But I now ( since October last year) have many hypo symptoms and have had a hemithyroidectomy ( 5 months ago) so the remaining thyroid is presumably struggling to compensate
Tsh has gone up but T4 is just the same as it’s always been
So I am wondering if I have a conversion problem but of course I can’t get that tested directly
Happy to try testing privately - through agree I shouldn’t have to do this- is five months after the operation a long enough delay for all the reserves of T3 to have been used up
I’m quite lucky and my ft3 is tested every time with my gp bloods. He just puts on the form that I’m taking t4 and t3 and they automatically do it. When I was on Levo only though it was only ever tsh and ft4 that was tested.
Let's go back to basics! It's immaterial whether we are on T3 as it needs to be tested anyway. Why can't the so called experts see this.
We are often also told we can't take it as it's dangerous!!!! Another good reason to get it tested as we already have some in our bodies through the way our body works or have the so called experts forgotten all the basic physiology? Before they have chance to mutter that we are adding T3 then what is their take on testing that T3?
However way you put it or they argue, at the end of the day it leaves us and countless others not being treated properly at any level by the ones who are paid to keep us well and safe. They have a duty of care and I would suggest the basics for that is dialogue of how we are feeling and testing to see where our body could be letting us down then acting on it.
The lab my local CCG uses won't test FT3 but is part of a pan-regional CCG. If I go to the phlebotomy clinic close to work (different CCG but part of the same pan-regional CCG), it is tested. The phlebotomists have to transfer the test details onto a different form but so far have been really good about it.
If you can get T3 included on the form, would a clinic outside your area be able to fulfill it?
Hi Babette, I live in Cornwall, there is only one proper hospital and path lab. I could ask my GP if Devon would do it but I didn't like the endo. I saw there.
Looking this up I found The Royal Devon and Exeter do private blood tests but it's finger prick at £29 if I remember rightly. I would have to beg my GP to do the draw.
Hey there Beaton,
I too live in Cornwall and I asked my doctor if she could do T3 and T4 and she said the TSH was sufficient.
I stayed seated and asked could I please have my T3 and T4 bloods tested and that if needed I would be happy to pay.
She left the room coming back to say it would cost me around £35 and I would be invoiced direct for private pathology from the Royal Cornwall Hospital.
This was back in 2017, since then I've used Medichecks.
Mind you I've not been back to see the doctor, as having been refused a trial of T3 early last year, by the one and only endo I've seen in 10 years, I have gone on to self medicate and stay away from them all.
I have written to both my doctor and the endocrinologist advising them of my decision to self medicate and offered myself up for yearly monitoring providing a TSH, T3 and T4 will be arranged as I can't see the point of only a TSH blood test check up.
I have Graves Disease, have had my thyroid ablated with RAI, and a TSH blood test has no bearing on my health in any shape or form.
I have not received an answer or acknowledgement from either party
It's less stressful going it alone, though of course, not right, and in fact, it's a down right disgrace.
Hi Pennyannie, thanks for the reply, it's not just me then?
No - don't get paranoid - get even - and get well by yourself !!!!
If there are community phlebotomy clinics in Devon, the CCG tests FT3, and your GP agrees to put it on the form, would that be a possible solution?
I'm in a CCG that uses a lab that can't / won't test FT3 and will only check FT4 if there's a problem with TSH. But if my GP includes FT3 on the blood test form and I go to a phlebotomy clinic near work, which happens to be in a different CCG, they'll happily take my blood and send it to the lab at the local hospital who will test FT3. No endo involvement (although I do see one twice a year).
I am on combined T4/T3. Was never an issue as my TSH was suppressed and FT3 was always tested. Last time it was tested st GPs I asked the phlebotomist to write on the form that T3 needed testing as I am on combined medication. Was not done!!!! I got the nurse to ring lab to find out why. They just said it would have to be done again as they had disposed of sample. I had to have bloods done again and then when they were sent off the nurse had to ring them to get it done. They were going to refuse again!!! Fast forward to last few weeks. I have been diagnosed with invasive breast cancer. Oncologist says she can’t monitor me as she has no experience of autoimmune thyroid disease. Fair enough! I contact ebdo’s secretary having left a message 7 weeks ago to say I have breast cancer and as i’m Concerned about how chemo will impact thyroid meds I would like more frequent monitoring, no call back. Actually managed to speak to secretary abs eventually agreed he can monitor me at a distance if I have bloods done at surgery and GP faxes them to him. Oncologist writes to him to say he must monitor me! I get a phone call from him - I heard of! He says oncologist has written to him and advised FT4 is 24.5 (Range 12-22). He wanted me to reduce Levi by 25mcgs (I had only increased by 25mcgs about 6 weeks before. I agreed as i’d experienced a mild episode of internal shakiness. Not sure if chemo or thyroid related. Anyway his parting comment was “no need to measure FT3 as it’s very unreliable”! God give me strength!!!! Looks like i’m on my own! Why oh why did I insist on him monitoring me?
Just wanted to say I hope you have a swift recovery from your breast cancer, as far as the hypothyroidism goes the care in this country is pitiful, words fail me when it comes to describing the lack of knowledge or even care many of us receive with regard to this illness.
Sadly have to say the same about breast cancer too! I’ve been told the tumour was 1.1cm. Then after seeing 2 distinct areas on an ultrasound scan,the larger one was dismissed as a haematoma from the biopsies! I insisted on an MRI which showed the tumour was 4cm! 4 times the size that they said! The treatment protocol completely changed to chemo then surgery! Then the oncologist measured it at 4.5cm and on Tuesday she said she could feel it in the other side of my breast! Another ultrasound is being arranged! I’ve been refused psychological counselling by 5 departments as “out of area” and my GP is having to go to CCG for funding to get me referred to a psychologist that I saw 7 years ago when my husband was diagnosed with terminal bowel cancer. I am being denied support for a psychological issue caused by the NHS!!!! Unbelievable! I’m having to fight for everything at a time when stress is the enemy!
I will be thinking of you and hoping that all goes well for your ongoing care, it seems to be quite a minefield out there, when you are at your lowest it seems you have to fight tooth and nail to get what should be available as a given.
Do you have access to a macmillan nurse I am told they are great when it comes to support.
Get well soon
beaton
If your T3 was initially agreed by an endo, even though you now aren’t under him, you could write & explain this situation.
He has passed your care back to your GP but if your GP can’t persuade the labs to test your T3, then she is failing you.
Ask that he requests the labs to test your T3 as you are medicating it & cc your GP & yourself into the email.
I was told I don’t need a Macmillan nurse as I have a breast care nurse. She’s been off sick for a week and is on holiday for 3 weeks! So very limited support!
Blood tests on nhs
Self medicating T3 - GPs and NHS blood tests
T3
Testing on NDT or T3 or Combo
