GP wont test ft4 for patients on levo

Hi all

Requested a thyroid panel test this week as I've been feeling very symptomatic recently. Terrible digestion, brain fog, heavy periods, fatigue, weight gain - you get the picture. My GP surgery has always tested TSH and FT4.

However, today on phoning for my results, I am told that they do not test FT4 for patients on Levothyroxine. I explained that I have always had my FT4 tested and the receptionist asked a doctor who said this does not happen. This seems a huge backward step in our fight for proper treatment.

My TSH has risen from 0.57 where I have felt completely well to for the last 18 months to 2. Goodness knows where my ft4 is let alone ft3 (never had that one tested).

I hope this is not a trend. I am in Dorset area.

I have a telephone consultation with a doctor I have never spoken to before on Monday. Wish me luck.


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26 Replies

  • Same here plus I could never get T3 done either by the GO or my endo - although the endo used to request it - the lab never did it! That's why I get my own done using the home fingerpick test from Blue Horizon. I can't recommend it highly enough. I use their Thyroid 10.

  • Thank you. I will bear this in mind. I can't imagine relying on TSH only. Crazy situation.

  • When did you last have a blood test?

    This is about the blood tests and give an explanation of why we need them. Doctor might have been directed to only take the TSH for a diagnosis and treatment. I think thousands of them do that anyway from some of the posts we read.

    The fact that your TSH has risen is a 'warning' that you are not on sufficient hormones otherwise it would have remained stable.

    Good luck and I hope you are successful as you probably know more than the GP now.

  • Hi Shaws

    I requested a blood test last week because I knew my levels were out. TSH is now 2. For 18 months my TSH sat happily at 0.5, rose in September 2015 to 1.4, now 2.

    I am preparing for a bit of a battle but thanks to all the good advice on this forum, I can prepare my case.

  • Also, if you email for a copy of Dr Toft's Pulse Online article (he was President of the BTA). In No.6 you will see how low Dr Toft advises also he goes on to say some of us need an addition T3. Tell your doctor you felt good when TSH was 0.5.

    Hopefully you'll be lucky. I don't think they (doctors) are aware that our doses might need adjustment from time to time.

  • Hi

    Apparently its the Labs that decide not to test it

    My GP requested it on blood test form but did tell me its down to the labs if thay do it which normally they don't .


  • I've heard this before Rose, seems extraordinary that labs can overrule doctors.

  • Hi foreversummer,

    I also wish you well for Monday

    Take care,


  • Thank you. Much appreciated.

  • I would suggest you phone the path lab and ask them on what basis they refuse to test t4 and t3 since free t3 is the vital hormone every single cell in the body needs to function

  • I did exactly this and was told that they didn't do the FT3 test because it is "of little diagnostic value".


  • how on earth are they ever going to assess those with Central /pituarity Hypothyroid only using TSH

    its a total nonsense

  • Absolutely. Also they didn't check FT3 when my TSH was suppressed and my FT4 over range.

  • We seem to go backwards instead of forwards in our fight for proper treatment. A very sad state of affairs.

  • The so-called "normal" range for TSH is misused and misinterpreted by doctors. Most people who are symptom-free have a TSH below 1.5.

    What is worse is that TSH does not provide any indication of whether there is a sufficient amount of T3 (the active Thyroid hormone) at a cellular level.

    So, even if the TSH and Free T4 levels are OK, it is still possible to not have enough T3 being absorbed by the body's cells and organs, resulting in Hypothyroid symptoms.

    The stupid thing is that most doctors will refuse to check the Free T3 levels if the TSH and Free T4 levels are "in-range" or "normal", which is just another of the reasons why patients who have a T3 Thyroid hormone deficiency are either diagnosed with a non-Thyroid problem (e.g. depression, chronic fatigue, Fibromyalgia, even early signs of Dementia), or not diagnosed at all.

  • I am in Dorset. And for the first time in donkeys years they have refused to do free t3... In future i am not allowing them a blood test if they cant measure all the frees. The tsh tells them nothing... The docs are paid on results and if they have a thyroid patient on their books, they are paid to reach the target of annually testing them.

    So.... I get no testing of thyroud and doc gets mo money.

    I had a hysterctomy at 39 because of the heavy bleeding.... It was years later when i read that heavy bleeding is linked to low thyroid levels.

    Do a qick google search and lots of things come up about it. However, it is mentioned on the nhs website. So i would tell the doc that you read about it there.... After all its the nhs... How could it be wrong. :-)


  • Thanks Galathea - This is part of the link:-

    Many symptoms of an underactive thyroid (hypothyroidism) are the same as those of other conditions, so it can easily be confused for something else.

    I assume that's why it took about seven years+ for me to be diagnosed as not one doctors or A&E ever did a blood test and you get palmed off with anything else they 'think' of. Like you with a hysterectomy - how many others undergo the procedure maybe unnecessarily so.

  • With my most recent test, FT4 was tested, the first time in a long time. My TSH had risen from 0.8 to 2.4 to 4.3 (0.3 - 5 lab range), which may have triggered it. I've seen my GP requesting it in the past, but nothing coming back, and my GP has been apologetic about not being able to provide FT3 info "because of the lab".

    The phlebotomist was a bit off-hand with me (as was another, on another occasion). I think this was due to a combination of my GP not having put the request through, and all my detailed self-submitted notes being on her screen (which I'm not happy about!).

  • Offhand plebotomist? You dont need to put up with that. First, you look them in the eye and ask if you have upset them in some way.... If you dont get a satisfactory explanation, ask for another person. If there isnt one, ask when there will be.... Honestly, There is no excuse for a bad attitude.

    Although, when i was really little in the 1960's, my grandad had a sign up in his shed, which i think has probably stayed with me all my life..... It's really corny, but it said.... "Why be awkward? With a little bit more effort you could be ruddy impossible ".


    G x

  • T3 is the one that really needs to be tested and they dont do that eaither

  • As my GP said "We only do TSH" in the NHS !

  • Thats disgusting then. With that lack of understanding from gps what hope do we have.

  • If they won't test T4 or T3 maybe they would consider antibody test TPO. I was fine for several years just on levo then became quite ill. I asked for TPO test which showed raised levels, NHS doesn't offer any treat ment but I went Gluten and dairy free and managed to get my TPO down from 120 to 10 (range 0-60) and felt a lot better.

    It is a sad fact now that if you want answers then private testing seems to be the way forward. Tough luck for those that can't afford it. So much for a national health service when it is the local commissioning bodies that decide what they spend the money on, testing or not!!! Hope yoy get some answers.

  • The labs deciding what to test is becoming a real problem. I was told they would not test T3 if the TSH was in range, but when mine was way over range, they still did not test. Now they refuse to test Vit D. The lab does not know you or your symptoms or past illnesses, they should do as the GP asks. It is all to save money, but it does not, because we then are prescribed anti-depressants, antacid etc, and still feel ill and revisit the GP.....

    We need, en mass to right to our MPs pointing out this and asking for the GP to be in charge of our health, not someone who is in a lab.

  • Doctor needs hitting with a clue bat! Any chance of seeing a different GP? Or get your own tests done through TUK (Blue Horizon or Genova).

  • Thank you to everyone who has responded. It will be interesting to see how it goes tomorrow. Im going to try my best to educate her if she doesnt play ball.

    Ill post tomorrow when ive spoken to her.


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