I recently got back my second set of thyroid function test blood results (previous set a week and a half before). The GP said that the numbers haven't changed except my TSH has raised slightly (which I expected as I had the blood test done earlier in the morning):
TSH - 3.5 (0.35-5.5)
T4 - 10.7 (11.5-22.7)
Antibody test also came back negative.
The GP was really dismissive of my concerns about secondary hypothyroidism and my symptoms, suggesting that my issue was diet-related and that I should get a repeat blood test in 3 months but that the issue would probably go away on it's own. As my T4 is only slightly below the reference range, she was suggesting that there's nothing wrong with my thyroid at all and that my symptoms (constipation, bloating, gas, fatigue, breathlessness, sensitivity to cold, dizziness, palpitations) are caused by my diet.
I just feel very lost and don't know what to do as if they won't find out what's wrong with me/won't even accept that anything is wrong with me, how can I get treatment and start feeling better?
(BTW - I'm not medicated on Levo or anything as I've only recently started having these issues (TFT was normal in 2019 with same level of TSH as above and normal T4) and I've tested negative for coeliac)
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pinkginger15
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Most doctors haven't even heard of Central Hypothyroidism - when it's the pituitary involved it's Secondary Hypothyroidism, when it's the Hypothalamus involved it's Tertiary Hypothyroidism.
Here is some information you can show your GP so that she can educate herself in this respect:
With Central Hypothyroidism the TSH can be low, normal or slightly raised, and the FT4 will be low.
TSH is a pituitary hormone, the pituitary checks to see if there is enough thyroid hormone, if not it sends a message to the thyroid to produce some. That message is TSH (Thyroid Stimulating Hormone). In Primary Hypothyroidism the TSH will be high. If there is enough hormone then there's no need for the pituitary to send the message to the thyroid so TSH remains low.
However, with Central Hypothyroidism the signal isn't getting through for whatever reason. It could be due to a problem with the pituitary (Secondary Hypothyroidism) or the hypothalamus (Tertiary Hypothyroidism).
Your GP can look at BMJ Best Practice for information - here is something you can read without needing to be subscribed:
You could do some more research, print out anything that may help and show your GP.
As Central Hypothyroidism isn't as common as Primary Hypothyroidism it's likely that your GP hasn't come across it before. You may need to be referred to an endocrinologist. If so then please make absolutely sure that it is a thyroid specialist that you see. Most endos are diabetes specialists and know little about the thyroid gland (they like to think they do and very often end up making us much more unwell that we were before seeing them). You can email Dionne at
tukadmin@thyroiduk.org
for the list of thyroid friendly endos. Then ask on the forum for feedback on any that you can get to. Then if your GP refers you, make sure it is to one recommended here. It's no guarantee that they will understand Central Hypothyroidism but it's better than seeing a diabetes specialist. You could also ask on the forum if anyone has been successful in getting a diagnosis of Central Hypothyroidism, possibly in your area which you'll have to mention of course.
If your GP continues to be dismissive, I would see another GP.
Did you give any thought to the private tests suggested by SlowDragon to include the full thyroid/vitamin panels?
I basically told my GP a lot of the information you say about central hypothyroidism as I've been doing a lot of research since by first blood test but she didn't even seem willingly to consider it or do some quick research online (which I've seen GPs do before). It's difficult though as all the appointments are telephone appointments so it's not possible to print out documents as evidence.
I would try another GP but I'm not even optimistic that any GP will know enough about central hypothyroidism to refer me to an endo as it seems to be a GP-wide problem.
I'm open to getting the private tests suggested by SlowDragon but what would I gain from this other than more detail about vitamins and stuff? Not that I don't think vitamin levels are important, just how would it influence my interactions with the NHS and getting a diagnosis?
Low vitamin levels are EXTREMELY common when hypothyroid
Low vitamin levels tend to lower TSH
As GP only looking at TSH this is disastrous
NHS refuses to test TG antibodies unless TPO antibodies are high. Significant minority of Hashimoto’s patients only have high TG antibodies, often struggle to get diagnosed
20% of Hashimoto’s patients never have high thyroid antibodies
Ultrasound scan of thyroid can be helpful
20% of Hashimoto's patients never have raised antibodies
I've just ordered the advanced thyroid function blood test from Medichecks which includes vitamins and iron and TG antibodies. Thank you for your advice
It's difficult though as all the appointments are telephone appointments so it's not possible to print out documents as evidence.
You could deliver/send them to the surgery in advance of your appointment, marked "For the attention of Dr XXXX" when you know who your appointment is with. Then during your appointment you can ask "Did you look at the document I sent in in readiness for this discussion?".
That's a good idea but unfortunately my GP surgery has changed up their system because of covid and you can only get a random doctor on the day to telephone you.
Hi, have you had a private blood test done? I was surprised that my usually spiky GP listened to my private results during my phone appointment on Monday. I really didn’t expect her to. It might be worth getting the full shebang done and then you have some more potential ammo? x
I'm going to do a full blood test with vitamins and all the thyroid hormones from Medichecks so hopefully the GP might listen to me after that! Glad to here it worked for you x
You are suspiciously hypothyroid. Undertake a private thyroid function test then be prepared to change your gp and or complain via PALS if they don’t engage supportively with your signs and symptoms. The GP is being ignorant and or negligent or belligerent - you need a wider TFT with ft3 ft4 and tsh as a minimum, every time! Only if ft3 is unequivocally strong could the doctor suggest doing nothing but keeping watch on your test results thus far...
What do you mean by suspiciously hypothyroid- that my GP should have spotted that something is wrong? I'm going to do a private full thyroid blood test and then see where to go from there... Thank you
That’s what I mean about potentially negligent, they have have no sound basis for knowing what your ‘borderline’ is and their approach shows they are ignorant of how the lab ranges are far too wide to know where your very personal range is within them. The difference between ok and not ok for individuals, even if all their TFT levels are in so-called lab range, is horribly small and can only be figured out by trial and error dosing, which takes months (or years). The lab range is a very crude catch all for first pass diagnosis and any persistent symptoms with any potential anomalies in the relationship between an individuals ft3 ft4 and tsh and their physical signs and symptoms should be thoroughly worked out. It is much much more likely that your healthy ranges are 4.4-4.8 ft3 15-17 ft4 and 1-2 tsh, for example, than just somewhere/anywhere in the whole lab range, which can be as bad for you as being clearly outside the lab ranges. Only if your ft3 was higher than normal for your peer group could they justify doing nothing but monitor closely for 3-6 months (lab range doesn’t indicate what is statistically normal in the peer group for any individual, it is a crude range without any finesse !).
GP’s hardly know a thing about the thyroid. My old GP admitted to me that I may as well be talking to a plumber on two occasions, he knew that little about thyroid issues. Any TSH above 2.5 is hypothyroidism, this was explained to me by my senior private only Endocrinologist. The NHS blood ranges he explained are too wide.
Your TSH needs to be around 1.00 to feel well. I was fobbed off for years by the NHS. My only route to wellbeing was through my private only Endocrinologist, who diagnosed me within two consultations and prescribed combination of Levothyroxine T4 and liothyronine T3 medications. Now I’m fighting fit and feel 20 years younger. So, please if you can, go private as you’ll end up wasting years and your precious time dealing with NHS Drs who haven’t a clue really.
Yeah it's shocking how little they know and even worse that they refuse to admit it a lot of the time. Interesting about the TSH levels. I am definitely considering going private as trying to get diagnosed and referred through the NHS will probably be a nightmare so thanks for the advice and sharing your experience!
Hi McPammyI am following this thread and am very interested in what you said. Would you be willing to share your blood results when the private endo diagnosed you??
My TSH was over the range. My T4 was at the very top of its range. And my T3 was scraping in at the bottom. I was only converting 8% of T4 to the much needed T3. Since starting T3 I’ve gone from strength to strength. I have had a few blips en route but I guess that’s to be expected. I’ve been on T3 now for 2 years this week along with T4 medication. It’s made a huge difference to my health and wellbeing in numerous ways. I also did the DIO2 gene test and that came back positive.
Sorry to hear it took you so long to get diagnosed! I'm definitely considering going private as GPs never seem to listen to me and know basically nothing about thyroid problems (like how TSH isn't always reliable!) x
I'm in a very similar situation to yourself. I'm also not on any thyroid medications.
My gp is unable for whatever reason to not take my thyroid results seriously; I also have a low/bottom and out of range FT4 and an TSH possibly indicative of Central Hypothyroidism.
I was shocked to find that I have had blood results like this for over ten years but only just discovered that after seeing my earlier results online!! The gp has never passed any comment on these previous results so I was completely unaware of them!
It's only recently over the last year that my symptoms have got worse and so I found out my previous results almost by accident as I was new to using Patient Access.
I just keep being told 'it's all in my head' or that my mental health problems (mostly anxiety) are the cause of the continual tingling in my feet and other symptoms .
I did ask on the forum for PMs regarding a thyroid specialist endo in my area but unfortunately I didn't get any responses.
So I'm currently following guidance from the forum to try to improve my vitamin levels as my ferritin was low before having another try to find an endo that can help me.
Yes I'm currently trying to improve my ferritin and vitamin D levels and will get full thyroid and vitamins tested before I have another try at finding a private endocrinologist.
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