Just at the start of trying to take control of my thyroid issues.

Hello,

Reading posts on here I obviously know nothings compared to lots of you!

I've had an under active thyroid for about 9 years and take 175 levothyroxine, my doc put me down to 150 for 2 years despite me raising a number of times that I feel permanently unreasonably tired shortly after this change. He put me back up to 175 recently and 6 weeks on I'm still exhausted. He isn't interested at but I'm sick of feeling so low. I've never had detailed blood tests for it just the most basic one. I have carpal tunnel or tingling hands, wake up with dead arms, and also have painful trigger finger, have seen a specialist who says it's nothing to do with thyroid and gave me a steroid injection.

I am sure they are all connected, but my main frustration now is that we have been trying to get pregnant for over a year, to no avail despite eveything on tests saying we are 100% ok!

Can anyone help? I was wondering if NDT would be likely to make me feel better but don't know how to go about discussing it with my doc as he is just old school and not interested!

I found a private online testing that does detailed testing of all thyroid related hormones and levels for £100 - is it worth doing since my gp won't?

Thank you all.

6 Replies

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  • It sure is worth getting a private blood test done. I have had one recently through Blue Horizon ( details are on thyroid uk website)

    I think it was about £65. It will give you a much better idea of what is going on with various levels of T4 T3 ferritin folate and vitamins. It may show something that you didn't know about because NHS blood tests don't check those, generally speaking.

  • Even if your doctor does more in-depth tests, he won't understand the results. You're much better off doing them privately, and posting the results on here.

    The problem with your arm sounds like low B12, so you need to get that tested urgently. A B12 under 500 can cause neurological damage - it's crazy that doctors don't know that! 1000 is optimal for B12, but doctors think that anything in range is fine, even at the bottom of the range.

  • Thank you! The private test I have ordered includes b12, I wasn't so aware of that! When I get my results I will certainly post them, thank you!

  • You're welcome. :)

  • Do you know if you have high thyroid antibodies? Have you ever had thyroid peroxide (TPO) antibodies and thyroglobulin (TG) antibodies tested? Are they being checked in your private blood tests?

    Either or both can be high - this indicates that thyroid issue is autoimmune - known as Hashimoto's.

    Many thyroid sufferers (esp if Hashimoto's) find that a strict 100% gluten free diet can reduce your symptoms, and lower antibodies.

    Hashimoto's (and gluten issues) can both lower your absorption of vitamins and minerals. That is why we all need levels checked of vitamin d, b12, folate and ferritin. Many of us find that these need to be a good (not just in range) levels for thyroid hormones to work well.

    There are NICE guidelines about your TSH being below 2 if wanting to get pregnant. There are lots of posts about fertility issues.

    Others will advise, or use the search box on here too

  • We have recommended labs for full thyroid hormone testing.

    Carpal Tunnel is a clinical symptom of hypothyroidism as is plantar facilitis.

    Re pregnancy, fertility and femail problems are all interconnected to thyroid hormones which control all of our metabolism.

    So you know have to take your own health into your own hands and with help from members you will be able to get pregnant and relieve your clinical symptoms.

    If in the Uk, our doctors are Endos follow the guidelines of the British Thyroid Association and they say levothyroxine alone is sufficient to return us to good health. Its well seen that none of them have ever had a thyroid gland dysfunction that didn't respond well to thyroxine like the 40,000 on this forum. Many do fine on levo but not on this forum.

    We have to read and learn and ask questions and we will get much better.

    Adjusting levo according to blood test results is very common but the patient doesn't improve much most times. (TSH they seem to only take notice of and that's from the Pituitary Gland) and they are ignorant of all clinical symptoms and there are over 300 but even if they knew a few it would be a relevation.

    Always get your blood test at the very earliest and fast. Allow 24 hours between your last dose of hormones and the blood test and take it afterwards. Always get a print-out of your results with the ranges for your own records and you can post if you have a query.

    You have to have a very low TSH for pregnancy around:-

    thyroidpregnancybook.com/buy/

    thyroiduk.org.uk/tuk/testin... and if you quote Thyroiduk's code you will get a discount.

    hypothyroidmom.com/help-sav...

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