Update after seeing NHS endo !

Hi all,

so I saw an NHS endo yesterday. I came away very disappointed and felt I had been wasting his time. My tsh was in range at 0.79 but my FT4 was 11.8 (12-22). I reeled off my many symptoms which he agreed would fit with hypo pituitary or hypothyroidism but he said it was unlikely to be either of these things due to my tsh and FT4 only being 'slightly under range'. His solution was to repeat thyroid function tests, test vit D again and do a cortisol test which I will be sent an appt for. He seemed pretty sure there wouldn't be a problem as he informed me he would send me an appt to review my results before discharging me. All in all I felt quite silly. Does anyone have any idea why my FT4 might be low with a normal tsh if the endo doesn't find any problem ? Would I need to try and increase my FT4 level or leave alone ?

Thanks in advance x

5 Replies

  • Everything you feel now seems to be quite common after seeing an NHS endo, so don't blame yourself. You have not wasted his time and you have no reason to feel silly.

    Your TSH is very low in range and your FT4 is below range. Hopefully next time round there will be an FT3 result as well and your endo will be able to make a proper diagnosis, rather than just dismissing hypopituitarism, which is what low TSH and low FT4 would suggest.

    Your endo should know that in the case of hypopituitarism, he needs to work off FT4 and FT3, not off TSH and obviously, if your FT4 is below range, you are low in thyroid hormone and will be symptomatic.

    Let us know how you get on.

  • Thank you for taking the time to reply. I guess I'll see what the new results have to show then decide whether to treat myself or see someone privately ! X

  • Your endo is an under-educated idiot. Simples. He should know that the classic signs of secondary hypothyroidism are low FT4 and low TSH. In my opinion the only use for the TSH test is to determine whether hypo is primary or secondary. Yours is the classic demonstration of TSH showing secondary hypo (ie pituitary problems). The most important test of all is the FT3 test. It's lack of T3 that makes you hypo. Ask your GP if they will measure that for you. If not, order it from Genova UK or Blue horizon before starting to treat yourself.

    Edited. Here it is, straight from the horse's mouth (Pulse learning for doctors) dl.dropboxusercontent.com/u...

  • Thank you rosetrees that link was really useful. My gp ordered the test initially quite a few months ago and also did test FT3 (sorry I forgot to include the result) it was 4.2 (range 3.1-6.8). I am expecting a long wait to get my follow up appt with the endo again to review results of the blood tests I had yesterday. So fingers crossed its sooner rather than later so I can make a plan to feel better ! Thank you again ! X

  • Hi PinkPoppy,

    I have attended 3 major hospitals and got nowhere. The last one discharged me in Dec 2013.

    My TSH, FT4 and FT3 all hover just below the ref range or at the lower end of the ref range.

    I've been told (verbally) by hospital clinicians that I don't have a thyroid condition or issue, that my lab tests reveal that I'm hypothyroid, that I'm hyperthyroid, that I'm both, and that I'm hypopituitary/secondary hypothyroid.

    It's interesting that these doctors are not inclined to put their statements in writing. One suggestion for you and others - make a copy/scan of the lab test referral form if the clinician has written what he thinks on it. For example, one of the clinicians who hasn't put what he's told me in writing, wrote on a lab referral form "hypopituitary condition". On the spur of the moment, I got the nurse to photocopy it for me before handing it over. So I now have evidence of what thought &/or told me, but I now regret the numerous times that I didn't copy the referral forms. Not one of these doctors had ever written that I have a suspected hypopituitary/secondary hypothyroid condition. One hospital's senior registrar even admitted that something was wrong and that he'd like to be honest with me, but couldn't, and that he certainly couldn't put it in writing if he couldn't even tell me what his true thoughts were about my condition. I asked, "why?" He said he'd be in "big trouble" with the Lead Clinician, his colleagues and the hospital. His reputation and salary and CV meant more to him than restoring my health.

    And there you have it.

    So I'm torn between, "am I hypopituitary/secondary hypothyroid, or am I hyperthyroid, or am I swinging between both, or am I a bit of both at the same time?"

    Because I have osteoporosis, it's important that the diagnosis is correct so that I don't make my condition and my bones worse.

    Have you had a cholesterol test and a DEXA bone density scan? If so, how were your scores?

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