“Honorary Endocrinologist”

So I’ve got a TSH of 64.9 and I’ve had a TSH of around that or higher for about 8 months now, ever since I stopped taking T4 as I was just sick and tired of being overtreated and it making me a madman. I’m now on T3 just upped to 40 mg the thing is I actually feel OK, I admit I’ve had a hell of a three month period that started in Nov with Flu, I don’t mean cold I mean proper in bed for three weeks flu, this then developed into pneumonia and pleurisy (how we laughed) At one point I thought I was actually going to die, but was so ill I didn’t really care and in the middle of all this my beloved cat was diagnosed with chronic arthritis and I thought that she was going to have to be put to sleep, I cried so hard in the vets I made the vet and the nurse cry, the cat bounced back with the drugs but she’s 15 and they don’t go on forever but she’s a sweetheart and a trooper so on we go a day at a time.

So anyway the thing is how come I feel OK with such a high TSH? My GP just shrugs and says things like, “the last person I saw with a TSH that high was psychotic,” or, “I wonder how you aren’t 30 stone and unable to get off the sofa?” and the Endocrinologist says, “I’m really surprised that you’re not really ill,” This is an Endo whose title on the letter she sent me was, “Honorary Endocrinologist” WTF???? I asked a friend of mine who’s a retired GP what that was and he didn’t know so asked a specialist friend who said, basically they are using her as an Endocrinologist, but not paying her as one. I was like well what the hell is she, I mean is it like the degrees that they give footballers who now have honorary law degrees but have the IQ of an empty crisp packet? She did say that she had never prescribed T3 for anyone before, which I thought rather odd. When I expressed my concern that the CCG may stop Drs prescribing T3 she said, “can you get it on the net?” Really is this what the NHS has come to, specialists and Doctors asking you if you can get your own drugs on the net? Of course I haven’t told them I’ve already got a stash of Greek T3 just to be on the safe side. I did ask for a copy of my blood test but she couldn’t get the printer to work! she also had a student with her who actually seemed to be in charge!! It was all a bit alarming. Forgive me I am coming to the point, so she said, “Well your T3 is fine but your TSH seems to be going up so we should double the dose from 20 to 40,” adding, “is that micrograms or milligrams I can never remember.” So my question is if my T3 is fine why would we need to up the T3? I mean I understand that they want to get my TSH down and I’m not on a high dose but won’t they end up over treating me with T3? Any thoughts or explanations would be much appreciated.

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13 Replies

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  • Hi - unusual story, I can't comment on it all. But anyway, I believe that your t3 could be in range with a very high Tsh, as your pituitary gland is shouting at your thyroid and urging it to work extremely hard to produce more t4 (for conversion) & t3. Obviously your thyroid is responding but probably from very limited capacity. The t3 you are taking is in addition to this, and you need more because your pituitary shouldn't be shouting and your thyroid shouldn't be having to work so hard, that is damaging to your whole system.

    At least an "honorary endo" may not have the very fixed view of most despite their apparent lack of knowledge!

    Good luck

    Gillian xx

  • Is your TSH value always derived from the same testing base? If so I'd get it tested elsewhere, by a different method as you may be getting antibody interference in the TSH test giving falsely high values.

  • Thanks for the reply, I'm not sure what you mean by testing base, its my GP practice that test my bloods but I've also had blood tested at the hospital a couple of times in the last few months and they all seem to show the same high TSH. I haven't heard of antibody interference before, I have been asking for years how come when my TSH goes really high I don't feel ill and they all just look at me like I'm stupid. I'm going to read up about antibody interference if you have any links to any information I would love to see them. Thanks again.

  • I mean by testing base, the hospital you get tested by and the machine and TSH test they use. Some TSH tests are sensitive to certain antibodies in human blood, and others not. So it's possible your hospitals test is unsuitable for you.

  • Thanks for that, and I don't mean to be dim here but sometimes I am, So basically I need to find out what machine and test is used by my GP and the hospital and then find a place that uses a different system. Do you know what the different systems are by any chance?

  • There are lots but so long as a different method is tried that should be a good start.

  • Over here in finland you can just ask your doctor and they contact the laboratory to use different test method.

    Over here all laboratories are aware of this and mention it on their manual. If test results doesn't match with the symptoms or are weird in any way it's a reason to run tests with different method.

    So most laboratories can do it, but as it is not commonly used they don't offer it as normal test.

    Doctor has to ask for it.

  • Marty123 Was the Honorary Endocrinologist wearing a clown costume and had a red nose that honked when pressed? It does sound like a bit of a circus!

    I hope you're feeling much better after your illness. I had pneumonia and pleurisy last winter, thankfully not flu, so you have my sympathy. Don't forget, it can take months to get over pneumonia so take it easy.

    I hope your cat keeps well. Mine is 15 too, thankfully showing no signs of age at the moment.

    As for your TSH, yes as Diogenes says, try and find somewhere else that uses a different testing system. Maybe have a word with Blue Horizon, Paul is very helpful.

    And personally, as long as you feel well, I'd be guided by FT3 result rather than TSH.

  • thanks for the kind words, god knows I can use them at the moment as on top of everything else that's been going on my father in law passed away a week ago so things here are a bit raw! I'm deeply ashamed to say I cried more over the cat, but then I wasn't well, at least that's my excuse. but on the subject of Pneumonia did you know that there's a vaccine against it? I didn't, I only just found out but I will be having it as soon as I've had last chest Xray to check everything is clear! its a one off so not like that flu shot which I'm also going to be having from now on, I know some people ate dead against flu shots and I was in that camp, not anymore I'm not. My GP looked at me and said, "in just after WW1 19 million people died of flu that's more than were killed in the war, that's why we say get the shots"

  • Marty123 Yes about the pneumonia vaccination. I had it three years ago when I was diagnosed with a lung disease as it's always recommended then. So, like the flu vaccine, you can have it but it doesn't guarantee you wont get what you are vaccinating against.

    There are many different types of pneumonia - bacterial, viral, mycoplasma (atypical or walking pneumonia), fungal. Then the pneumonia can be Community Acquired Pneumonia which is common after flu, Hospital Aquired Pneumonia (acquired in hospital when you're already there for another illness so can be more dangerous because you're already ill). So even though you have the vaccine, like me you could still get pneumonia. But I'm not saying don't have the vaccine.

    I've also had two or three flu vaccines, and even though I have this lung disease I have decided that I will not continue with them. I do, however, do a lot to boost my immune system and any hint of an infection means I step up on that as well.

    I understand your reaction to your cat's illness. I didn't cry when my husband died (long illness, we knew it was coming at some point so prepared for it), but I can go to pieces thinking that at some point my little dog will no longer be with me - and she's only 6!! Strange how out emotions affect us.

    Sorry about your father in law, condolences to you and your family.

    Stay strong, I hope you feel better soon.

  • many, many thanks for the advice and the kind words and sorry for your loss.

  • As Diogenes says you need to have another assay for your TSH level. Do you have some blood test results you can post? i.e. TSH, fT3, fT4. This would be very helpful.

    Your TSH is inconsistent with your symptoms. How were you diagnosed hypothyroid? What were the blood test results?

    It is (very) remotely possible you have a pituitary problem that is pumping out TSH. It is also possible you have pituitary resistance to thyroid hormone (PRTH). This is also rare and is treated at Addenbrooke's Hospital, a referral from an endocrinologist is required.

    You need your GP to refer you to a qualified endocrinologist so that they can carry out further TSH assays and measure your thyroid and pituitary hormones. It is not acceptable to assume hypothyroidism purely on the basis of an immunoassay reporting an elevated TSH when it is contradicted by clinical signs and symptoms. You need to be assertive with your GP and get a referral to a competent endocrinologist. Pumping thyroid hormone into someone who is experiencing hyper symptoms will do harm.

  • If you feel OK and have upper range FT3, it's just possible that you could have something like a TSH-producing tumour or some other pituitary problem.

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