help with what to do next

Hi Everyone..I initially posted on here after getting an unexpected 'borderline hypothyroid' result from blood tests taken for something else last March and was told by GP that I would definitely develop the disease in the future , but my results were in 'normal' range so to go back in 6 months for another blood test. When i came home and read the symptoms related to 'hypo' , this made sense as I had been experiencing the majority of them for the last two years ( insomnia, heart palpitations and weight gain being the worst ) but put it all down to ageing / early menopause. After advice on here, I went back to GP to also ask for FT3, Iron, and Vit D Tests. As a result of those , was advised by administator to self supplement for B12 and Folate, which were low and also taking a high pro-biotic for 4 months which I have done. Then was advised at my next test to request thyroid peroxidase and thyroglobin antibodies to also be tested to rule out hashimoto's. I had the test booked for this week but the GP's receptionist called me the day before to cancel it because my last test was in September, and said the GP would not test me for another year ! I am still displaying all the symtoms, despite supplementing for the last 4 months and I don't know where to go from here. I have made an appointment with a different GP to discuss all this next week. Can anyone advise me what the next step should be ? If they are unwilling to test me for another year, I doubt that they will refer me to an Endo, but I am willing to go private to sort this out. Should I go to blue horizon for these tests , instead of waiting /suffering for another year? So frustrating just trying to get a diagnosis ! I have emailed Louise Warville for a list of Endo's but am not sure if I still need a doctor's referral, even to go private ? Any advice would be helpful at this stage as I feel like am getting nowhere fast. Thanks all.

19 Replies

  • I can't advise you on which tests as I am still on a steep learning curve myself, but you will need a referral from your GP in order to have a private appointment with an endocrinologist. Clemmie

  • Thanks Barrister..good luck with yours

  • No you don't need a private referral to get a blood test via Blue Horizon. Blood tests should be done as early as possible a.m. as that's when TSH is highest. It's also wise to get a Free T4 and Free T3 test.

    Some private Endos need a referral letter from GP but some don't.

  • Ok, thanks Shaws, I guess I will just have to research which Endo's don't need a referral from GP as don't hold out much hope for assistance from what has happened so far

  • You can also post a new question, asking for any recommendations for an Endocrinologist to be sent to you by Private Message.

  • Thanks Shaws, I saw a different GP today and he has agreed to do another thyroid test including antibodies, so I am booked in for this next week and will post the results once I get them.

  • That's good. I hope the test is as early as possible although you may not have a choice. So hopefully you get sufficient to give a diagnosis.

  • Tick of your symptoms from this list for the new doctor.

    for Hypo:

    for hyper

    You can also tell him you have joined and that are on the NHS choices.

  • Thanks Shaws..I have just had my blood tests results back which I will post now in a new question..Dr says they are all normal again

  • Yes, they may be in the normal range but that doesn't mean that we have 'normal' health which is supposed to be the aim of thyroid hormones being replaced. There's a huge difference.

  • Hi Shaws, thanks for all your seems that the replies on here all suggest that I am hypo, so I will contact the GP ..again ... and take my printouts with me.

  • He should definitely take note of your clinical symptoms. Why wait till you rise another point or two?

  • Thanks Shaws, I feel stuck in a time warp where I can't seem to move forward. It's difficult to argue when I don't understand the FT4 / FT3 stuff, so i will just take the relevant comments on here with me. The last thing I want to do is just accept that every 6 months, they will say I am still 'borderline' and feeling gradually worse, without doing anything.

  • He should really test your Free T3 too as if that is too low as well you don't have sufficient of the Active hormone we need to function.

    It's not right that we should have to read so much and know more than most doctors. Here is a link which will also be helpful to you but probably not doc as they stick to guidelines, which aren't in the best interests of the patients all of the time, particularly with relation to the thyroid gland.

  • Hi Shaws, thanks for that....I think they did do the T3 last time but seemed not to this time ( although I did ask for full tests again )..they just called everything 'normal' but I am making an appointment on the advice of you and Clutter to speak to the same GP and will try to take as much info with me as possible.

  • It gets confusing too when there is T3 and Free T3.

  • You're telling me. You are all so knowledgeable and I am struggling to understand it all . I end up reading all the posts ( and some people are way more poorly than me ) then not really knowing whether I should push the GP for medication or not as my main symptoms are weight gain, unable to sleep, pins and needles, dry itchy skin and sometimes palpitations. Also big thing which I went to GP for in first place was lack of libido but have been thru the big M without any HRT or help so I just don't know what's linked or not. Doc's don't really seem to care but I am not prepared to wait patiently until i develop full blown / worse symptoms which is what they seem to want me to do.

  • All of the above 'clinical' symptoms are due to your thyroid gland and the symptoms are around about 300 altogether, so you can understand why GPs are not au fait with most but they should be with the most common, i.e. weight gain, libido, female problems, insomnia, muscle/joint pain etc etc. It's no wonder that some poor patients are diagnosed as hypochondriacs. Before the blood tests were introduced along with levo, all medical students were trained in symptoms and we were diagnosed and prescribed due to them. A trial does no harm. Nowadays it's all down to the TSH which varies throughout the day anyway and is from the pituitary gland which doesn't always rise sufficiently for diagnosis.

    I think we would be happy if we were all diagnosed on symptoms and given medication that made us well and levo usually works for many but not for everyone but is the only one stated in the guidelines so many of us remain unwell.

  • Docs don't seem to either care or link all your symptoms up to one thing. Instead of taking my symptoms as a whole, my dr has referred me to a dermatologist (for hair loss) and had me have an ECG (for heart palpitations). He also offhandedly suggested my symptoms were like dementia (because of my brain fogginess, forgetfulness ... I'm 26!!). Instead of taking all these symptoms together he seems to want to find one separate reason for each of them

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