Just been to Dr. Contrary to what the receptionist told me only my ths was tested at the 7 week point and it's down to 1.21 from 7.23. Thry wont test t4 if the ttsh is ok. She says my symptoms aren't likely thyroid related (as the levo should be working now)  and my tsh is where it should be and is sending me for all sorts of further tests. ESR, full blood count, renal and electrolytes, liver profile, glucose. I'm really really scared what's wrong with me if it's not thyroid. Can anyone make me feel any better? Please.....

14 Replies

  • If they will not test the FT4 and the all important FT3 - how can they possibly say it is NOT your thyroid.  Is there a chance you could have private tests done with Blue Horizon - through Thyroid UK ...  How do they know if you need an increase in your dose ??

    No wonder the NHS has financial issues if Docs keep requesting tests that are not needed and yet ignore the tests for what could possibly be the root cause.

    It makes me angry and sad at the same time - as people are not getting well when they should be.  Hope you soon feel better.

  • You are  star. In mynpanic forgot about the fantastic thyroiduk website and just booked a test through them. Thx so much

  • Marz. Thanks so much for this. I drove a young man called Steve at blue horizon a little doolally yesterday. He was very kind and patient. I booked a test and will go first thing Monday. Thank you for this much needed sanity check. I really appreciated it. Xx and I will not take my levo beforehand, will fast and be there for 9 am when it opens.  😁 

  • Even if 50mcg of levo is enough for you (and I doubt it!), 7 weeks isn't enough for hypothyroid symptoms to fully resolve. You'll have been struggling for some time and it takes time for healing to take place, so to say your symptoms are not thyroid related is at best premature and at worst idiotic.

    Doctors seem to have forgotten that it's not all about what blood tests say - it's about symptom resolution. There's wiggle room left in the lab range for TSH to up your dose to 75mcg. I think I'd visit the doctor and ask if you could try a raise to 75mcg.

  • Thx. I'm going to change my GP surgery and find a different Dr too. I don't feel they listen.  She was just hung up on my tsh as 1.21 and therefore I'm cured so have depression. I said I'm not depressed or at least I don't think I am. Just tired. So she ordered a load more tests and put the fear of God into me. I hope she's wrong.  Xx

  • Your doctor needs some educating. 50mcg is a starting dose and the aim of replacing levothyroxine for the patients own diminishing hormones is that the patient feels well. 

    They make the same mistake all the time, instead of giving sufficient hormones to make the patient well. The stop according to the whereabouts of the TSH.

    Is she aware that before the TSH was introduced patients were given doses of between 200 and 400mcg of NDT. There was no fibro or CFS either.

    The fact that she says your clinical symptoms aren't hypothyroid is very revealing. She knows 'nought'.

    I assume you had the earliest appointment and left about 24 hours between our last dose of levo and the test? Did you remember not to eat before the test.

  • No... No one told me not to take my levo. I told her I'd taken it and she said it didn't matter. I'm not going to make the same mistake with my private test. I hadnt eatrn tbough i had had coffee and water. She also said my inability to sleep wasn't anything to do with thyroid. If I hadn't found this forum I would be much less educated. Thank goodness for you wonderful folks. 

  • Oh, she really is ignorant, isn't she!

    To get the highest TSH, an early morning test - before 9, much earlier if possible - Don't eat, or drink coffee! Just water. And leave 24 hours between your last dose and the test.

    Of course your sleep problems can be due to low thyroid. Anything and everything can be due to low thyroid. Because when there is not enough T3 to go round, the body has to shut down some of the T3 receptors, so that essential systems can continue to keep the body alive. Not all bodies chose the same receptors, which is why you get such a variety of symptoms. Over 300 symptoms of low T3 have been recorded. There are probably a lot more. But I doubt if doctors can cite even one of them!

  • Ladies any recommendations for an endo in London or reading area?  Thx. 

  • There are some fellas on the site! But I am up North.

  • Contact Louise Warvill by e-mail for a list of suggested Docs who could be thyroid friendly ....

  • Sorry. Bit doh. But who is she and how do I contact her. If she's thyroid UK. Don't they just recommend GPS? Thx x

  • Thanks again. Found her and emailed her. 

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