Confused by Endo response to my symptoms

I have been unwell for the past 5 weeks - symptoms of hypo. Have been hypothyroid for 15 yrs. Couple of times it has gone out of kilter and I have seen an endo privately, had blood tests and had meds increased which has always helped my symptoms. I got a letter at begining of May after seeing the endo at the end of April ! to say that my TSH was supressed and I needed to reduce my 125 to 100 for a month but if I had unwanted symptoms from this then I was to take 125 every other day. Needless to say I did have symptoms when I reduced to 100, then I tried the alternate dose but by this time I was ill - v slow pulse, cold, lethargic and cardiac symptoms. I went to see my GP who after checking my heart has referred me to a cardiologist. I requested thyroid function blood tests from the GP and result was TSH still supressed but my Free T4 was 17.3 (Ref range 10-25) which was lower than it was in March at 22.7. They did not check my T3 which was in the middle of the normal range in March. My endo initially said that I was taking too much thyroxine (I had gone back to 125 ) I pointed out that my T4 had fallen, he reluctantly agreed, and when I pointed out that my T3 was not recorderd he said that it wasn't important to know that!! I just got the feeling that he wasn't at all interested. I explained that my throat hurt and my thyroid felt uncomfortable, he had a quick feel and said I may have had a bout of thyroiditis. Outcome was he agreed for me to stay on 125 and have a review in two months but to get my bloods checked with my GP before I see him. I know the T3 won't be done again even though I request it and so does the nurse who takes the blood. This is the care from seeing an endo privately! - I am begining to wonder if this endo who is retired from the NHS and just sees private patients has lost interest! Would be interested to hear others experience. I have been off work for the past three weeks and don't feel well enough to go back but its so difficult when there is such vagueness about this condition.

4 Replies

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  • You say, you are having a problem with a private consultant?!!

    On the NHS I have found that if the TSH is in range, they will not test the T3. The only time I have had the T3 checked was when the TSH became suppressed at 0.02

    Needless to say, at a private hospital, can you not just pay for the blood test you want, or it still cause a problem as a doctor has to agree it first and this is your stumbling block I take it? Is there a way you can get the blood test done and pay for the T3 and antibodies yourself at the private place, and leave the GP and local hospital lab out of it for now? Perhaps not if he said it wasn't important to know the T3 number.

  • Hi Fiona

    Thanks for your response. Yes I could have the T3 test done within the private sector, but my point was that this Endo (in the private hospital) was saying that T3 knowledge is not necessary! Seems a bit of a strang view from someone in the speciality of endocrinology. My TSH was also supressed at 0.05 but the lab still did not check the T3 levels.

    In my experience once the TSH reading becomes suppressed then alarm bells start ringing and no consider is given to the patient's clinical state nor to the T4 and T3 results.

  • Yeah that's the situation I am in with a TSH of 0.02 and still having some symptoms and lower functioning than I would like. I am looking for a second opinion myself and will go private if need be. But as you say, you don't want to pay for the appointment turning into a waste of time and it being no different to what you would get on the NHS. You would expect a private doctor to be for T3.

  • Alli,

    The medics have some very odd views. Wherever you look in medical literature they go on about the narrow therapeutic range of thyroxine. There has been the (fairly) recent tightening of the range allowed for potency of levothyroxine (95 to 105%). But they are scared stiff to allow even the tiniest possible increment in dose.

    Then they slash your dose by 25% and appear surprised if it has a bad effect.

    Reminds me of the conflict between on the one hand weekly dosing (e.g. of old folk by district nurses) and on the pother the patient information leaflet saying if you miss a dose by more than a short time don't even dream of catching up. Skip that dose.

    You make sense. They do not.

    All the best

    Rod

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