More and more frustrated

Went back for blood results today, was expecting to get FT4/T4 and FT3 results and they had only done FT4

They refused to do B12 etc etc

Ft4 is 12.4 (range on form 12.0- 22.0) have a long long list of symptoms and have managed to get the Dr I saw to discuss with my Dr a trial of medications and IF my GP agrees they will start me on a low dose.

Without wanting to seem negative what can I do if they refuse?

12 Replies

  • Did they not do your TSH as that would be unusual? You have practically no T4 so I cannot see why they will not give you levothyroxone. If you were healthy I would assume your T4 would be towards the upper level. I would like to know what your T3 is as T4 is needed to convert to T3. I think it's shocking they wouldn't do your B12 as well.

    If they start you on a low dose, 50mcg it is a starting dose and after 6 weeks you will need another blood test plus increase. Don't take levo on the morning of the test, which you should have as early as possible. Take levothyroxine afterwards. Always get a print-out of your blood test results for your own records and so you can post for comments.

    Take levo first thing and don't eat for 1 hour approx before food.

  • my TSH was done in December and was 3.18 but had risen from 1.8 in Oct

    She has said would start me on 25mcg IF my Dr said was ok

    My Iron levels are within normal range but very low, I have had to really stamp my feet to get the tests done i have had and am really cross they didnt test T4 and FT3, but I dont know where I stand on what I can ask for, The GP today agreed that if i was in the US I would have had all the tests done and be being treated and said that over there "they dont have the NHS, they have to pay for their care"

  • I don't think your doctor has much knowledge of the function of a thyroid gland.

    You need to start on 50mcg not 25mcg. It is too low and is usually used in increments of 25mcg to increase your dose gradually.

    She is sticking to the recommendations issued by the British Thyroid Association, not to prescribe until TSH reaches 10. Some doctors, fortunately, take into account the clinical symptoms. I think they are more concerned about their jobs than the patients at times.

  • You can actually have private tests done if need be.

    This argument of NHS vs US health care is such a red herring. When they refuse to do the necessary tests they push you into expensive private health care anyway.

  • i really cant afford to be seen privately, if they say ok to meds shall i push for 50mcg? she is saying too much is as bad as not enough

  • Well of course too much is incorrect, but again, this is a red herring. What you want is not too much OR too little but the correct amount which will relieve your symptoms and restore your health.

    25mcg often makes people feel worse. I think the theory is that it turns off your production of thyroid hormones but isn't enough to compensate for that loss and augment it, so your levels may in fact fall.

    If they start you on 50mcg and test you in six weeks they will know if you're overmedicated when you have your next set of tests, but in any case you would have symptoms of overmedication if that happened in the interim.

    Have a read of this: It recommends a starting dose of 50mcg.

  • Believe me, if we took too much, we should notice it within hours. We would have unpleasant symptoms, we would miss the next day's dose and reduce it ourselves automatically.

    It is hormones we are dealing with, not drugs. I just don't think they understand.

    This is a link re the proper use of thyroid hormones and it's a pity doctors don't know, so we have to. Go to the date November 28, 2003 to read the question/answer and the other questions on the page may be relevant at sometime.

  • just got off phone, one more blood test to test thyroid anti bodies also ft3 and t4 being tested tomorrow morning, and seeing my gp weds, hopefully good sign? they now talking about sub clinical hypothyroidism like its news to me when i mentioned that to them weeks ago after chatting on here lol will read that link and take with me wednesday

  • Go as early in the day as possible for the blood draw. Your tsh is higher in the wee hours and will decrease later in the day, and you want the test to show as high a tsh as possible.

  • Hi Smarties, Did you ever see the movie, Forest Gump? I think the doctors in the UK are like that box of chocolates and you never know what you are going to get. But it's more like walking a minefield rather than eating least from all the posts I read. That's why Shaws mentioned self medicating. If they fail you totally, their are other options that may not be out of reach. I'd start a little fund in case you need to go there. In the meantime, keep learning about the condition although it sounds as if you are already ahead of your GP.

  • have just been reading up on CFS as I have appointment Monday with consultant about possibly having that and came across this as a reason for CFS along with, Decreased Adrenal Function, Chronic infections, Possible micronutrient deficiencies - all things not routinely tested for

    1. Subclinical hypothyroidism—for the reasons noted in the discussion, if the free thyroxine [FT4] index was low normal and signs and symptoms suggestive of hypothyroidism were present [e.g. constipation, cold intolerance, low temperature, delayed ankle tendon relaxation phase, etc.], a low-dose Synthroid trial [25-50 mcg] was considered [especially if fibromyalgia was present]. If the thyroid stimulating hormone [TSH] was > 4 or < 0.8 [with a low normal FT4 index], this also weighed in favor of treatment. The free FT4 and ultrasensitive TSH assays are microparticle enzyme immunoassays for the quantitative determination of free thyroxine and human thyroid stimulating hormone in human serum as measured on Abbotts IMX.

    I didnt know what Synthoid was so looked it up and guess what.................its a thyroid hormone

    So basically whats being said is, if you have results like mine all borderline) but have lots of the symptoms and are being referred as a CFS patient, they are going to treat you with a thyroid drug and guess tend to get better. seems crazy

  • Synthroid is levothyroxine in the USA. Synthroid is expensive because it is a 'brand' name. In the UK we used to have a Brand called Eltroxin and it has been withdrawn for some unknown reason and many members, some taking it for more than 15 years have had their symptoms appear again with the generic levothyroxine we are prescribed. This is a link and Dr Skinner died two years ago. So we are left without the only doctor who stood against the modern method of diagnosing and was hounded by the GMC for doing so.

    P.S. if you press the red Reply button to any comment, otherwise no-one is notified and I've just come across your response just now.

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