Went to GP just before Christmas and told him that I had suspicions about the health of my thyroid and listed about 15 symptoms of hypothyroidism. Had some blood drawn and Thyroid function came back as “Normal / no further action required “. I asked GP why only TSH had been tested and not my Free T4. He told me that if TSH was normal no further testing would be done by the lab. A few days ago I went back to the GP and tried to persuade him to do another blood test and specifically request FT4 and FT3 tests. This he reluctantly agreed to but the lab once again only tested TSH (1.4 - range 0.27 to 4.2).
Both the GP and the lab are insisting that if TSH is normal there is no need to check T4 levels. In the meantime I am still suffering…. I have read about central hypothyroidism and problems with the hypothalamic / pituitary axis, both of which can reduce or suppress TSH levels at a time when T4 / T3 levels are low.
There is the option of a private test but this is around £137 and I resent paying this when I feel the NHS could easily do this for me. I feel I have made a strong case (wrote a detailed letter to the GP outlining my concerns) for further testing but it seems to be falling on deaf ears!
My GP appears to be “treating me” (or not in this case) based on blood test results and not my symptoms.
I could weep with frustration……
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Edso57
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i agree , they do risk missing central hypo by only testing TSH initially .. but they would (rightly or wrongly) expect to see other signs /symptoms of a pituitary /hypothalamus issue , if there was one and they (rightly or wrongly) think that if pituitary /hypthalamus issue was causing central hypo . then TSH would be 'below range' .
Unless you have other things symptoms going on to make them look at the pituitary /hypothalamus function... they will be very unwilling to investigate a 'low normal' TSH.
You shouldn't have to .. but, since you do .... best value for TSH/fT4 /fT3 is Monitor My Health .. it's an NHS lab (postal . fingerprick ) in Exeter.
Less than £30. (might be about £26 with ThyroidUK discount .. details on 'pinned posts' somewhere i think)
Ordered thank you ! 😀 (Ironically it’s run by the Royal Devon and Exeter NHS Trust laboratory, which is probably the very same lab my GP uses, who refused to test anything more than TSH !!!)
These are really easy and good value for simple testing. Sometimes, when on treatment, we need to test other things too, so a more expensive test kit is required, but for now this will be great for what you need. I use them regularly to monitor dose increases now.
Are these finger prick tests? I can't get the blood out. This time I had to succumb to the NHS phlebotomist but she filled up a spare tube for me which transferred to the private lab tube. It will be interesting to see if the readings are the same.
They are finger prick tests but most come with the option when you order for a blood draw. There are private phlebotomists who can do you a draw in pharmacies or come to the house. Mum has one to the house for less than £20. I can pay my surgery for the nurse there to do it for me. £10 last time I did that, which is pre-pandemic now.
For finger prick tests you must be well hydrated and you must pierce the finger tip on the side (it comes with diagrams). If you do the centre of the fingertip pad you won't get blood out. You need to be warm and your hands should be warm. Do some gentle exercises first to get warm and supple and then stand to do the test. All these tricks mean I can now do it reliably every time. I struggled at first.
So ironic ... it'd be funny ...except it isn't . So if you're thinking 'central/secondary' hypo is the issue .. but your TSH was not quite LOW enough to attract their attention .. then perhaps (contrary to the usual 8/9 am advice ).....you would do best to do your test around 1-2 pm when TSH is naturally LOWEST ?
(GP's don't seem to know TSH has a circadian rhythm , no need to enlighten them to the fact that you do know this fact , unless you choose to )
Normally for 'primary' hypo, when HIGH TSH is the diagnostic test , you'd want to test as early as possible in AM 8/9 am , because TSH is highest in middle of the night, and falls to it's lowest around 1-2 pm ish before starting to slowly rise again.
But if you do 8/9am testing then you might get 'TSH just inside bottom of range / normal/ no need to test fT4 /go away' from next GP.
Not everyone has a big difference between high /low point , but can still be enough to make the difference between 'just in range' and 'just out of range'
I had TSH done a long time ago after 12 o’clock before I knew I had thyroid issues it was almost 3 … High how would you guess it would have been if test was done early morning? Just curious
as far as i know ... from looking at one fairly small study of a few 'healthy ' people .Some people can have a difference between the very highest / very lowest point of as much as about 40%...... but some others didn't have much difference at all.
8/9am is not the highest point for TSH , that happens very early am .... maybe 1/2am.. (time varies slightly between individuals)
So the answer to your question could be .... "not much higher" .. or could conceivably be "up to maybe? 4 at most" if you'd had it done at 8/9am.
BUT if your '3' was from very late in after noon/ early evening ... then '3' might not have been your very lowest .. that happens around 1-2pm (again , this varies slightly between individuals ) ... after that low point it then start to rise again slowly ,, so by eg. 4/5 pm, in some people, it might already be on it's way back up a little .
Thousands upon thousands of people forced to test privately to make progress
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis) diagnosed by high thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis. Both are autoimmune and generally called Hashimoto’s.
In U.K. medics never call it Hashimoto’s, just autoimmune thyroid disease (and they usually ignore the autoimmune aspect)
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
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
Thank you for a comprehensive reply….. I guess private testing is going to be the only way forward ☹️. When my thyroid was last checked (privately) my TSH was 0.38 (range 0.27 to 4.2) and FT4 and FT3 at 35% and 37% of range. This was 5 years ago so would be interesting to know what they are now …. I have a lot of hypo symptoms!
I will do, thank you. I already supplement with high strength vitamin B12 (sub lingual tablets and spray), high strength vitamin D (with K2) and a B supplement with methyl folate….
Don't take b supplement for 5 days before test. If there is biotin in it it could give false test results.You say high vitamin d? How high and when did you last test it? Too high a d level is toxic so you should check twice a year, more if adjusting dose to get right dose for you.
Yes, I will stop taking the B complex a week before testing . I’ve been taking 4000 IU vitamin D (winter months only) which is the safe maximum recommended daily dose….
Essential to stop taking any supplements that contain biotin a week before all blood tests as biotin can falsely affect test results - that includes vitamin B complex
Just taking a separate folate in week before blood test and separate B12
Make sure to use your test kit around 8am, no later than 9am as TSH is highest in the morning. Don't drink or eat anything other than water before the test. Having a good glass of water about 1/2hr before you do it helps the blood to flow I find. If we are dehydrated the veins don't like to part with it.
We all do that. It means our results can be directly compared from test to test too. And if you end up on thyroid medication, don't take the day's dose until after the test either. If the GP want's to give you a test book it on the same principle. As early as possible. Keep all your test results in a file. It's very handy.
Thankyou for this detailed reply ..its ridiculous why we have to go the private route ..I'm struggling in income support as it is without having to pull money out here there n every where ..we all know our own bodies ..every 1 us different .yet dr decide to put us all in the same box..I've been really Ill these past 4 year so many symptoms but the 1s that should certainly be taking serious us my rapid weight loss of almost 6 stone in a matter of 8 month and my blood pressure drop ..but as far as them and their stupid tests are concerned ..I'm fine ..apparently ..I could sceam with frustration
Have put everything in writing to GP (including NICE recommendations for testing for Central hypothyroidism). Will wait for his reply and if still not satisfactory ask for another GP / second opinion !
This sounds like me right now😤I’ve just had a test done which I assumed,after asking,was going to be for a full thyroid panel,only to discover it was only for the TSH and Free T4,your post has now got me wondering if the lab just hasn’t done it or if indeed the doctor hasn’t requested it.I had an appointment with a mental health nurse at the beginning of January,as it’s all taking it’s toll on my mental health now,and I told him I wanted a full thyroid panel done,which he was meant to arrange.
I’m going to call the doctors again today to see what tests were ordered,but I think after reading your post I’m just going to go ahead and order a private one,at least that way I’ll know for definite what I want done is going to actually be done!
How are they allowed to treat people like this,it’s so wrong😢
Well according to a very helpful person on here my TSH is too high for someone on levothyroxine and my FT4 is false due to the fact I took my levothyroxine in the morning,even though the nhs test states I’m within range🤦♀️That’s what you’re up against😢
Watch out that you read the Thriva small print. They are good but they signed me up for repeat testing. They did cancel when asked though. My fault but we can all miss things!
My TSH is much lower and finally got my GP to accept it. Good luck.
Without test results that the GP accepts as a “problem “, I’ve got no chance. I’ll probably have to wait until antibodies have completely destroyed my thyroid 🤣
I’ll probably have to wait until antibodies have completely destroyed my thyroid 🤣
In central /secondary hypothyroidism , the thyroid isn't damaged .
(Antibodies don't have anything at all to do with central /secondary hypothyroidism)
Central /secondary hypo is caused because either:
a) the pituitary gland is incapable of producing enough TSH ( Thyroid Stimulating Hormone, which is what stimulates the thyroid to produce more T4/3)
b) the hypothalamus is incapable of producing enough TRH (Thyrotropin Releasing hormone )
TRH is produced by the hypothalmus >>
TRH then goes to the the pituitary to tell it to make more TSH >>
TSH then goes to the thyroid to tell it to produce more T4/T3.
So in central /secondary they investigate why either the hypothalamus or the pituitary are not responding adequately to low T4/T3 levels by producing more TSH or TRH.
.....However the treatment is still the same regardless of whether it's 'primary' hypothyroid (thyroid failing /damaged) or 'central /secondary' (thyroid is undamaged , but is not being stimulated ) ..... they replace the resulting low T4/T3 by using Levothyroxine (synthetic T4).
Where the antibodies come into it is in 'Autoimmune' Hypothyroidism (the most common cause of 'primary' hypo )
In this case the antibodies themselves are NOT damaging the thyroid (you will often see it written that they are , but that's usually just 'short hand' to save having to explain the complexities... and some writers just don't know enough to understand the difference)
What actually happens in autoimmune hypo is that the immune system mistakes the thyroid for 'other' and starts to attack bits of it .
Each time a bit of it gets attacked , some thing called Thyroid Peroxidase (TPO, which should only be inside the thyroid ) ends up outside in the blood stream.
At this point the Thyroid Peroxidase antibodies (TPOab )get attached to the Thyroid Peroxidase... their purpose is like labels saying " This shouldn't be here .. somebody please clean it up"
at which point , some other part of the immune system cleans up the spilled Thyroid Peroxidase.
So TPOab antibodies aren't damaging the thyroid of autoimmune hypothyroid patients... they are markers that indicate it HAS BEEN attacked .
If you had autoimmune hypothyroidism .. you would have a TSH that kept getting higher over time as more of your thyroid was damaged , not a low TSH that stayed low in spite of low T4/3.
For central /secondary hypo GP's are expecting to see "low /below range fT4 , with low / below range TSH "
For primary hypo GP's are expecting to see "over range TSH , with low /below range fT4"
(theoretically someone could have both a hypothalamus / pituitary problem AND autoimmune hypothyroidism .. they are not mutually exclusive.. but GP would expect one to start before the other and there to be some evidence of that in past results, )
That’s a very detailed and helpful explanation, thank you. I am having an ultrasound next week as I’m having some physical symptoms in the thyroid gland area too …..
I know it’s unlikely but if my thyroid has slowly been compromised by an autoimmune disorder over the years AND there is central hypothyroidism this could explain the lack of increase in TSH as the thyroid détériorâtes…..
Ultrasound should be helpful. If damage has been going on for long enough, then it can (i think ?) be seen on ultrasound . ( ?Something to do with seeing a characteristic pattern that looks like the pattern on giraffe skin..my knowledge is getting a bit sketchy here sorry)
usually if the immune system is damaging the thyroid then thyroid antibodies (TPOab , or occasionally just TGab with no TPOab ) will test positive .. have you had TPOab tested yet?
( NHS won't usually test TGab ,they just use them for monitoring thyroid cancer patients)
(however a few people have been found to have this characteristic autoimmune thyroid damage ... and don't have raised TPOab (or even TGab )... so a negative TPOab tests doesn't rule it out.)
So an ultrasound could possibly prove your thyroid is damaged, but it might not if it's not very damaged yet.. can take decades and symptoms can precede this by a long time.
If it doesn't show any damage, and you don't have positive TPOab , then obviously if you try and suggest to a GP that your "in range TSH, with negative TPOab "are because you happen to have autoimmune damage without any antibodies , and your TSH hasn't risen appropriately because you also happen to have a degree of 'central' hypo at the same time , but you don't have any symptoms of any other pituitary /hypothalamus hormone deficiencies"... they are going to look over their specs and say "go away, you're normal" ... so you need to prepare yourself for this adventure with a large amount of patience .
Meanwhile, with no symptoms, the GP who diagnosed me with an underactive thyroid is pushing again (after saying she would not test for another year) for me to test TSH. And she's no longer my GP! I've said not without T3 and 4. I haven't picked up the blood form yet as I am in no hurry until my bloods need testing anyway in April.
That's too bad. They look at all the numbers, but look very closely at you and your symptoms. They are about finding root causes and treat the body holistically, not one system (or symptom) at a time. Maybe research on the Internet and see if you can find one. Many strictly Western Medicine doctors mismanage thyroid conditions here in the US, too, but we have access to Functional and Integrative doctors, too. Those who live in rural areas usually don't, but otherwise, they are popping up all over because some of these doctors had loved ones or they themselves were ill and couldn't be helped, so they study above and beyond just what they're taught in medical school. And, some doctors are realizing that they really aren't helping their patients long-term. They are just managing symptoms. So, they seek out further education.
I have literally just got back after visiting my gp. I went to see him because of my muscle pain (I am now limping with my left leg pain) he looked at my last tests which were TSH only and he even commented that they had only given those results with no T4, so I’m now in the process of emailing my last private results from September ti him and I’ll also send the next lot which I should have by next week. Unfortunately private blood tests are the only way to go now, which is so unfair.
Everything about hypothyroidism is unfair. The disease itself, the lack of medical knowledge and understanding and empathy, the limited treatment options and the obsession with TSH. The lack of the correct tests and the lack of understanding of the results is just another part of the unfairness.
Your GP seems more enlightened than mine (and many others judging from the comments on this forum). Mine states that there is no point in measuring FT4 or FT3 if TSH is “normal” The lab seems to agree as they won’t do it either so I’m going private.
This situation is what happens when consecutive governments make cuts to the NHS for decades and run it literally into the ground. The current backlog will take at least a decade to be cleared,so we're all in deep doodoo.
Hi Edso. If your Dr says it's not thyroid problems causing your symptoms did he investigate any other possibilities? Thyroid symptoms overlap with a number of other illnesses. It would be negligent of him not to check them out eg did he do a full blood count to check liver, kidneys, haemoglobin etc( sorry, don't know what your exact symptoms are) or just thyroid?
When I last had my thyroid checked in 2016 my TSH was 0.38 (range 0.27 to 4.2) and my FT4 and FT3 were at 37% and 35% of range. My latest TSH taken a few weeks back was 1.5 so GP said all is well and there can’t be anything wrong with my thyroid.
I asked the GP to retest and ask the lab specifically to test for FT4, FT3 and antibodies. I just checked the latest results online and can see that the tests I asked for have been done this time, apart from FT3.
FT4 is now at 80% of range (it’s 20.6 - range 12.0 to 22.0). Thyroid antibodies also came back normal and TSH is 1.5.
GP is also sending me for an ultrasound of my neck / thyroid as I felt something wasn’t quite right in that area (lumpy / bumpy feeling?). He says the blood tests and ultrasound will “draw a line under this” but I’m worried that I’m still left with the symptoms and what could be causing them?
I can see there has been a big change in my T4 level since 2016 and wondered what could cause this? The only thing that’s changed is that I have been self treating a low vitamin B12 level using high strength sublingual tablets and a spray along with a B complex containing methyl folate.
Would welcome any comments as I’m totally confused by what seem to be thyroid symptoms but (apart from FT3 which hasn’t been measured) but “normal “ blood test results?! FT4 to FT3 conversion problem caused by B12 deficiency perhaps? ☹️
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Clear as mud eh ?
GP asked for T3 and T4 test, lab done repeat TSH and T4!!!!
Subclinical Hypothyroid and the GP won’t help!
The need for FT4, FT3 and TSH tests
Blood test results and dismissive GP
