Full of hope after seeing GP, now feel low

One of the receptionists from my GP just called me. She said they had a reply from endocrinology dept saying "you don't need to see an endocrinologist, just get a random cortisol done"... Huh?

My TFTs are "normal" but my GP refused to do thyroid antibodies. Two days ago I went back to him expecting a fight, but he was lovely and agreed to send me to an endocrinologist anyway as we both thought it was worth thinking outside the box.

I don't know what is going on - I felt there was a glimmer of light at the end of the tunnel but now feel the carpet has been pulled from under my feet. What happened to looking at the clinical picture/symptoms as seeing what the possibilities are? Ok, so I may not have a thyroid problem, but I might. If not, I need to find what's going wrong.

I am so desperate it have booked a private consultation next week cost £200. I at least want to rule this out. I feel very deflated and nearly in tears.

13 Replies

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  • £200 quid for a consultation? Wouldn't bother. Probable better spending the money on a full set of tests ... Blue horizon are doing a fairly good set for £89 if you use the thyroid UK discount. If you test everything then it may provide a clue what is wrong, then you will know if it's worth pursuing.

    Here's the link to the post about the test......https://healthunlocked.com/thyroiduk/posts/131992026/cheaper-private-thyroid-tests-in-the-uk.

    G xx

  • Thanks, ridiculous that no one will do this and I have to seek alternatives. Ironically, I work in the health service! What if they are normal? I have lots of symptoms and it appears diagnosis should be considered even if all bloods normal and present with hypothyroid. It's frustrating.

    Shaws, I've at my vitamins done already and they are all fine. Is it worth getting the GP to give me my results?

    Surely if I pay to see a private endocrinologist, he will take time to take me seriously??

    Anyone any idea how Iong the tests take to get the results? Thanks

  • Well, what if they aren't normal? If you don't get everything tested you won't know. If you know whether you have a vitamin and mineral problem, or an endocrine problem, it gives you much greater leverage with your hapless doctor.

    My own doctor has dismissed my 2 out of 3 over range fasting glucose. So I have now had a blood test to see if I have auto immune diabetes. I don't have the result yet, but if it's positive, I will put in a complaint.

    Lab tests for thyroid have a turnaround time of one day.

    Have a look at the link I gave, they are offering a pretty comprehensive test.

    X

  • The phrase by doctors (I have now come to realise) of 'normal' 'fine' 'in range' are just that. No notice of clinical symptoms, they don't know clinical symptoms. I was diagnosed by a first aider and paid out how much previously I don't even want to think about it and trying to find out why I was feeling so awful. Even one week before diagnosis I was kept overnight in the Cardiac Dept and discharged as 'probably viral with high cholesterol' - high cholesterol being a clinical symptom but they didn't do a thyroid hormone blood test, neither did the previous 8 doctors/specialists.

    From now on always ask for a print-out of your blood tests for your own records and so you can post if you have a query. They must have the ranges as labs differ and enables members to comment.

    We are entitled to copies and some might charge a nominal sum.

    I never thought I would be on a forum due to the inability to be diagnosed as many on this forum are. It must be that the Thyroid Gland, being one of the most important glands, seems to be the cinderella of glands that we have to learn by ourselves and support of sufferers in order to get some semblance of health back. Some people remain undiagnosed due to diagnosis by TSH only. Doctors rarely take notice of clinical symptoms but will prescribe for the symptom but we need hormones to balance our whole metabolism.

  • Hi thanks everyone for your comments & suggestions.

    Is there any difference in "accuracy" of results using vacutainer or microtainer? Want the best!

  • I agree with Galathea's response. At least your money will be well spent on a full set of blood tests, whereas the Endo may not. Post them on the forum with the ranges for comments and you can go on from there.

    Once you get your blood tests and remember to do them as early as possible, fasting (you can drink water) as TSH is highest early a.m.

    If we want action we have to do the groundwork ourselves at times.

    Ask your GP to do Vitamin B12, Vit D, iron, ferritin and folate and then you'll have a complete set. If your B12 (hormone) is low it can cause symptoms as does Vit D (pro hormone) and our minerals/vitamins are usually deficient. So everything has to be towards the upper range.

  • As the others have said, that might not be the best use of your hard earned money. There's no guarantee you'll see an endocrinologist who's sympathetic to your woes. This forum is littered with stories about Endonobs - so called endocrinologists who either can't or won't think outside the box.

    As your GP promised a referral and now can't follow through, go back to him and re-demand the thyroid antibodies test, a B12, a ferritin and a Vit d. They're saving money on not sending you to the Endo, so why not? While you're at it, get a copy of those "normal" blood test results and post them here for a look-see. :)

    Just imagine you were fighting to get a loved one treatment, and be as fierce about getting decent treatment for yourself. You're worth the effort.

  • I agree save your money.A friend was diagnoses at a hospital with hypothyroidism she asked for a antibodies test and they refused .She had it done private and as got Hashimotos.Her GP won't send back to see a endo but said he would treat her.Maybe these endos will only see us thyroid patients now if there are complications.Who knows .

    I know its annoying with these GPS they cannot see outside the box and we are the ones that suffer .I do wonder sometimes what they are qualified in because if the answer is not stamped on your head when you walk in, it takes for ever to get health problems sorted.

  • A consultation with a good endocrinologist could be worth your money. I'd cjheck him out first though, what does it say about him online? Is he/she on Louise Warvill's list? Telephone his/her secretary and find out more. also, aren't you entitled to a second opinion within the NHS? Could you present at A&E?

    Best of luck, hope you get sorted soon

  • I think you should spend money having all the bloods done and then represent yourself. If they are all negative and you are getting nowhere then approach again. I am in the dubious position of (so far) all negative bloods but all the symptoms and I think if I have no joy tomorrow at my appointment then I will have no option but to get aprivate appointment......shouldn't have to be like this but hey my health is sooo important to me

  • Hi I have heard from thyroidUK and 2 ppl have reviewed the guy who I've booked a private appt with. Apparently, completely unsympathetic! So, I will be cancelling. I have ordered the private blood tests. I am hoping something shows. I am getting so many symptoms, the burning feet are awful and the hissing in my ears is now constant. I am not sure if I am imagining it but I also feel I am not focussing very well today - another symptom.

    I am so worried about my health. Being a nurse, I know what the thyroid can do to your overall health. I went on patient.co.uk today (website written by GPs) and it stated (think in the sub-clinical hypothyroid section, under "who to treat") "all patients with TSH equal to or more than 10, or clinical features of hypothyroidism, should be treated". Also stated currently some controversy in treating patients with TSH less than 10, but consider if clinical symptoms.

    I ask - why the hell not just try and see if it works instead of all these miserable & sick ppl.

  • that's interesting my tsh was 10.74 on a full blood work up regarding something else and my gp refused to diagnose me as hypothyroid or medicate me! I believe 10.74 is " equal to or more than 10" .. glad I changed drs.

  • Couldn't agree more. I'm a nurse as well and it annoys me like hell when I think "I'm in the trade" and am being treated like an imbecile!!!

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