Getting a Thyroid diagnosis is difficult!!

Hi there all... I am new to this site but have found it really informative and it's nice to chat to folks with similar health problems. After a struggle I have had bloods done and results were today: TSH 4.2 FRee T4 12.1 cholesterol 7.9 and BP high. Feeling very ill and tired and breathless for at least 18 mths. Surgery sent horrible letter today I will be unregistered if I write any more letters (although gp said was fine to do so) as itcan take up to 5 weeks to see him. I was 2 mins late the other day and 2 mins in the queue and the letter says if I'm late again etc etc. Phoned and queried letter but burst into tears and not returning to it. It's a very hard thing to get diagnosed. I have sub-clinical hypothyroidism (diagnosed on Monday). No treatment yet until I see Endo. Soo tired. Hope I get well again soon and anyone else on this site who is ill .

3 Replies

  • When do you see endo? How many letters did you write? The free T4 is quite low and usually TSH would be higher. They are welded to blood test results and tend to ignore symptoms, we've all had that problem. If your endo appointment is not soon I'd ask for an interim prescription of levothyroxine (at least 50 mcg) to keep you going - due to the long wait for an appointment.

    There is the threat of being 'unregistered' but this is not an easy option for a doctor to take, they have to justify it. Who signed this letter, was it a doctor or a pen pusher? I'd keep a file of these threats. If they persist you have the option of making a formal complaint and taking it to the local newspapers. I'm not suggesting you do this, just keep hold of the option, your first priority is to get well. Bear in mind that if this lack of care and poor treatment continues you might be better off with another surgery, if one is available.

  • Jane,

    Not too sure why the endo would want to check your pituitary but it is reasonable to give them a chance as there could be something in your case history that warrants it. I'd always give a doctor a chance if they want to check something, it shows they are trying. I wouldn't take any thyroid hormone until you see the endo. It will be difficult but I suggest you advise people who need to know (family, employer etc.) that you will be having problems until then.

    I used to get very irritable when I was hypo, it was a full time job trying to hide it. If you get an appropriate opportunity I'd apologise for swearing and point out your hypothyriodism is having a major effect on you. This might give them a better appreciation and get a better response from them.

  • ' Endo thinks t4 very low compared to slightly raised TSH which can rarely i supposebe the pituatary'. I agree entirely, I've just never seen an endo say this so I didn't think it would happen. There are two main ways this can happen. If you have a period of hyperthyroidism (which you might not notice) prior to your hypothyroidism it can down-regulate your pituitary (just the TSH bit). Also, some illnesses and things like depression or stress can lower the TSH. Rarely there can be a pituitary problem, this would be picked up by other blood tests for the pituitary. This endo sounds good, I'd give them a chance. Make a list of your major symptoms and how they affect your life (this is easier for doctors to relate to). You will probably forget everything during the appointment, hence the list.

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