Blood tests following total thyroidectomy

How often should I have blood tests following a total thyroidectomy? They have just reduced my levothyroxine 5 weeks ago as my T4 was high and TSH low.

I can't just go into the surgery and ask for a test, they won't let me. I have to make an appointment to see the GP first and then another appointment to have test. You can't get to see GP for at least 2 weeks, last time I made an emergency appointment because I couldn't get an appointment at all. My aftercare since my op has been awful, well non existent. Even had to sort my own dressing out. I feel like I've been left to just get on with it. I did complain to the surgeon at my follow-up with him but to no avail. Any one esle had this experience?

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  • I'm sorry to hear this jazzylady and I can only go by the lackadaisical care after my daughter's hemithyroidectomy.

    Considering the importance of the thyroid gland to the body it's partial or full removal is treated as no biggie and the patient (in my experience) is left to get on with it. The treatment really is in keeping with how hypothyroidism is treated and I say this from the 24 plus years I have had hashimotos.

    If you have a dose change of levo our surgery wants more tests after 8 weeks on the new dose. If you still feel unwell you should keep going back and asking for more tests and changes to levo dose until you feel well.

    You may also want to ask about liothyronine but under the new NHS cost cutting measures this may be problematic. NDT may also be an option for you?

    You have to be strong and politely ask (as you catch more bees with honey than vinegar) for tests and dose changes to help you feel better.

    People who have had TT will know all the other tests you should have but I just wanted to wish you well.

  • You are not the only TT patient who have felt the same way. I do feel very sorry for you as the medical profession seem to be impotent in really understanding what it is to be without a thyroid gland altogether.

    Those who've been in the same situation will respond but for us to recover our health, we need to read, learn and ask questions.

    Blood tests have to be at the very earliest possible (doctors do not appear to know that the TSH drops throughout the day! It is highest early a.m. and lower late p.m. and will adjust your hormones willy-nilly to try to keep the TSH 'somewhere' in range, whereas we need it to be 1 or lower and some need it suppressed.

    They only appear to take take notice of the TSH(which is from the pituitary gland) so testing the T4 only will not tell us the most important results. which are Free T4 and Free T3. I will give you a link and you can read the reason why these are important.

    You can also tick off your symptoms in link below:

    thyroiduk.org.uk/tuk/about_...

    thyroiduk.org.uk/tuk/testin...

    thyroiduk.org.uk/tuk/testin...

    Always get a print-out of the results, with the ranges. Ranges are important as labs differ and it makes it easier to comment. You can request the last test you had and we are entitled to copies by Law. Some may charge a nominal sum for paper/ink.

    Also ask for B12, Vit D, iron, ferritin and folate as we can be deficient which will also cause problems.

  • Jazzylady,

    You should have a thyroid blood test 6-8 weeks after a dose adjustment. Once you are stable blood tests should be at 3 months and 6 months intervals and then annually.

    Arrange your blood draw early in the morning when TSH is highest and fast (water only) as TSH drops after eating and drinking. Ask for a printout of your thyroid results and lab ref ranges (the figures in brackets after your results) and post them in a new question and members will advise whether you are optimally dosed.

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