Low T4, Normal TSH but symptoms

Hi all

I'm currently in the throws of complaining about my GP not diagnosing me as hypo for several years. I have just received the standard your TSH wasn't elevated >5 so even though your T4 is low you don't have hypo (despite starting treatment in late 2013 and having the majority of my symptoms disappear) reply. (ie despite my current diagnosis of hypo this is incorrect and my current doc is wrong)

I've done a trawl this morning of the internet but am struggling to find any scientific papers (as opposed to website info) that support treating severely symptomatic patients with low T4 (my T3 was never measured) and normal TSH. Does anyone have any links to anything like this please?

Thanking you

24 Replies

  • If you have a copy of your blood test results with the ranges it can help others to comment upon them.

    This is a link which will inform you but probably not GP who is fixed in the 'guidelines'.



    I don't know why you were initially given thyroid hormones and then they were stopped. Might mean GP knows very little about treating patients.


    The following scientific paper has been accepted:



  • Hi

    Thank you for your answer but I'm treated and happy with my new GP and private endo so not seeking any advice on dosage etc.

    What I am doing is complaining to the NHS ombudsman about my previous GP who told me I was menopausal (not)/ causing own symptoms because so fat ( would not accept this as a symptom) and finally alcoholic due to liver damage. The ombudsman who's just sent back the initial finding which is that I shouldn't be being treated because I'm 'normal' despite my (pre treatment) crippling symptoms which magically cleared up (mainly and eventually) with NDT.

    Unfortunately none of the thyroid UK articles support treatment for people with low t4 without elevated tsh. I pointed them at Nice guidelines re secondary hypo in the original complaint. Apparently they can tell I don't have that despite not having discussed it with my endo...

  • I am glad you are happy with Endo and GP.

    This is another link and hope it is helpful as it mentions the different thyroid gland conditions:


  • Isn't that central or secondary hypothyroid? I have low everything.

  • It could be secondary but in my case it's not.

    Nor is it the case in my aunt and all female cousins. All of whom have a diagnosis of hypo despite being 'sub clinical' as we all have low T4 with 'normal' TSH. We're all diagnosed as 'borderline' and are all being treated; they're all taking Levo I upgraded to NDT last Sept and it's marvellous but I do have the DI102 gene snip. They've not been tested for the gene snip (I've given them the info)

    My mother, just to be different is borderline hyper. My gran was also hypo with a large goitre.

    My discussion with the endo on the subject went like this:

    Me: why don't they treat people who're subclinical with symptoms as a matter of course?

    Him: because the results are mixed. It works for some people like you and others still remain with the symptoms

    Me: Have they checked to see whether it works for the people with the DI102 gene snip and whether the others don't have this?

    Him: That's a really interesting question. I haven't seen anything on that but I'm going to look at it. Hmmm that's interesting. Yes I'm going to look into that.

    So, according to much of the medical profession my family and I shouldn't be treated. Luckily we are.

  • Surely the scientific paper that has been published by Diogenes indicating the irregularities in the TSH test is sufficient isn't it.....as posted by shaws above.....

    You also have the information on the D102 gene - so that prevents conversion - so that should be adequate also.

    Very little positive research done as it needs good funding and the only people that have Big money - is Big Pharma. Little or no money to be made in funding thyroid research. Keeping us unwell and treating the myriad of symptoms is far more profitable !!

    I had in range TSH - FT4 - FT3 when I was diagnosed. However - high antibodies clinched the diagnosis of Hashimotos....

    Thyroids need support when under attack :-)

  • I'd agree except they didn't treat my symptoms because I was making them up and/or I just needed to lose weight and/or I just needed to accept I was peri menopausal (despite FSH and oestrodial tests indicating that I wasn't)

  • nahypothyroidism.org/deiodi...

    Print off the above link and push it under his nose !! References at the end of the piece...

  • Forgot to say - I've pulled down several papers from various ones that have been posted by Diogenes and will be using to collate my response later on today.

    Thanks to everyone for the pointers; once I found the right threads I've got the ammo to respond albeit I fully accept it will probably do little but as I said I fully intend to go down all guns blazing and I might get the people who took away 4 years of my life, left me bald, without eyebrows, 3 stone overweight (i've lost a stone since diagnosis) with a damaged liver that is not recovering because they didn't deign to treat me to actually learn something and not treat the next poor hypo devil with the same contempt. Because that's the thing that I'm most angry about; being screamed at that I was causing my own symptoms, being dismissed and being told that I was a liar.

  • Isn't subclinical high TSH (top of or over range) and low normal T4? Yours sounds more like secondary or central, which the NHS don't seem to understand. I'd just give up and self medicate. It's cheaper than taking time off to go for appointments.

  • Hi Angel of the North

    Thank you for your answer. I'm already medicated and sorted out in that respect as I'm taking prescribed Naturethroid; I was looking for information to support a challenge to an ombudsman complaint that has basically said that there's nothing wrong with me despite me having a diagnosis of hypothyroidism from my GP and an endo.

    I think I have sufficient from a selection of posts from Diogenes which will be going into my challenge of their response which is factually inaccurate as well as poorly informed

  • I don't know of any scientific papers but ask your GP in investigate secondary hypothyroidism.

  • Hi Flower

    It's the scientific stuff I need as I want to use it as part of a complaint about appalling treatment by my previous GP. I'm trying to get them to just be trained on hypo so they don't treat anyone how they did me!

  • I don't have any advice on where to find the info you are looking for but will read any replies with interest as I'm currently having the same problem - normal tsh but FT4 right at the bottom of the range and FT3 not much higher and a gp who won't treat. I've found various websites supporting a trial of levo but no further forward yet and the endo refused to see me!

  • Hi Rayjay

    You have my sympathy as I was dismissed as an idiot hypochondriac for a very long time despite being extremely ill.

    I was extremely lucky to find an NHS doctor who listened to my symptoms, diagnosed me as hypo despite my blood results. However I did also have an indication from a private doctor in Jan 2013 who didn't diagnose me as hypo but said 'as a matter of good practice I'd probably treat you with levo given your family history'; unfortunately he'd put this as the fourth option to be looked at after brain tumour (because of my severe migraines where I was unable to speak sometimes), cause of liver damage (plus some worry about my kidneys) and investigation for bowel cancer. As at this point I was drifting in a cycle from 7 days with a migraine to 7 days feeling exhausted but trying to get everything done (and failing) so I prioritised the other 3 as I didn't know that long term hypo could cause so many issues plus at this point I'd been convinced by my NHS GP there was nothing wrong with my thyroid.....

    So first off try moving GP practices; I did and I got a competent new GP....

    If you can afford it I would suggest that you think about a private session with an endo who is recommended and just insist that they try you on 25 mcg of levo or self dose with NDT. I did a year on levo (100 mcg) but switched to NDT last Sept (with private endo prescription) and it's been a revelation. I felt better on levo but still had residual brain fog, migraines every 14 days lasting 3-4 days (but not as severe ie I wasn't losing the power of speech) plus would 'crash out' with exhaustion plus extreme cold 1 day in 3; with NDT I'm having what I would term a headache for 1-2 days every 28 days, I still crash and have the cold thing but it seems to be limited (and connected to) my cycle so is currently being dismissed as 'peri menopause'. Good luck in getting treated. So far I've not found anything that's of use save the standard NICE guidelines regarding secondary hypo which are woolly to say the least plus I quoted those in my original complaint and they were dismissed as apparently the rarity of occurrence means that GPs can't be expected to treat anyone who might have this as a problem....

  • Unfortunately I can't afford to go private but I will see as many gps as I need to if it will get some help! I mentioned secondary hypo to my gp but she dismissed it without further questioning. I know it's rare but it is possible in my case as I had a placental abruption with my second son and required a blood transfusion. Apparently the endo that reviewed my notes has written to my gp so I'm waiting to see what they've said before deciding what to do next. It shouldn't be such a fight :/

  • I asked around everyone I knew in the area as to who their GP was and whether they would recommend them. I went with the one that a friend with a challenging personality and many health issues recommended.

    Might also be worth looking at other people on the forum in your area (there's a button), DM'ing them and asking who their GP is and whether they're any good. You may be lucky and find a sympathetic GP locally.

    Good luck

  • Tuppenyrush, I think it is unlikely that a complaint will be upheld against a GP adhering to the BTA protocols which are endorsed by the RCP. These links discuss symptoms caused by subclinical hypothyroidism which is usually defined as TSH between 5-10 and FT4 within normal range.



  • I thought I was probably on a loser but it doesn't stop me going down fighting (and hopefully educating 4 doctors who made my life hell for over 4 years, treated me unprofessionally and have also lied to the Ombudsman unless they believe in time travel as they've attributed symptoms to things that happened up to 6 months after they said they did which is born out by my medical records)

    So wanted to see if there was anything out there and 2 hours googling only gave me website info rather than studies. Having a read of the urls from you; thank you

  • Was your t4 below range, or low in range?

  • My T4 was within range but 0.1 to 0.5 off the bottom end.

    Previously (because I'm aware that this runs in the family) I'd had a test in 2002 (when I felt fine) which put my T4 at upper range (0.2 off the top end limit). My current GP has said (and it's supported by my research into the whole thing) that people are only 'normal' for them in part of the range not the whole range. As my previous reading was right at the upper end of the range he's concluded that my 'norm' is top end. This was born out by taking levo as he started me on 25 mcg and gradually increased me to 75 mcg without any change to my T4 levels at all and very little change to my TSH. It was only when I got onto the 100 mcg that my T4 increased and my TSH dropped down.

    I'm now on NDT and my T4 is below the range (to be expected) but I am mostly (not entirely) symptom free.

  • Hi

    Try a site called thyroid advocacy UK, it's fantastic, there are letters you can copy and amend to your symptoms, there are some really good reports you can print off, it's the best site I have been on and it's free.

    i too have had troubles with my new GP, I kept asking for a referral to endo, I have been on LEVO 75 mg for four years and not got any better, keep dipping in and out of hypo and hyper, plus menopausal, not a good combination, I had to write a letter to ask for referral and I last I have got it, just wait for appointment now.

    Good luck keep us posted.

  • Your new G.P. sounds excellent. I equate it with height. If you are 5 foot 9, and you shrink to 5 foot 4, something is going on, even if 5 foot 4 is in the normal range of heights for women!

  • Oddly enough I am 5'9''!


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