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Hi

My GP reduced my levo from 150mcg to 50mcg 3 weeks into the dose change but endo was in charge of dosing and had reduced me from 150mcg levo and 12.5mcg t3 to just 150mcg levo. I have no idea whether I am coming or going in terms of symptoms and I am feeling awful with cold hands, feeling cold, dry skin, hair loss, hot feeling in fingers, constipation, joint stiffness and pain, difficulty swallowing, rapid weight gain, numbness in feet and legs. Advice welcome and below results on 150mcg levothyroxine only. Diagnosed 2011. Thankyou

TSH 0.36 (0.2 - 4.2 mIU/L)

Free T4 20.8 (12.0 - 22.0 pmol/L)

Free T3 3.5 (3.10 - 6.80 pmol/L)

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  • Allie6 Your GP shouldn't be messing around with your dose if your endo is in charge, resist any further interference from your GP and insist you are dosed by what the endo says.

    However, saying that, with these results on 150mcg Levo

    TSH 0.36 (0.2 - 4.2 mIU/L)

    Free T4 20.8 (12.0 - 22.0 pmol/L)

    Free T3 3.5 (3.10 - 6.80 pmol/L)

    it is very obvious that you need your T3 reinstated. Your TSH and FT4 are good but you're not converting T4 to T3 as shown by your FT3 result. Why did your endo stop your T3? If you felt well with the addition of T3 and your FT3 was within range, then it was right for you and you showed a need for it. You now have to fight to get it back.

    Some of your symptoms are indicative of low nutrient levels. Have you had vitamins and minerals tested, if so please post results with reference ranges and say if you are taking any supplements and the dose

    Vit D

    B12

    Folate

    Ferritin

    Iron panel/full blood count

  • Thankyou endo stopped T3 saying there was no evidence to say it would help me

  • The evidence is there in your current results on 150mcg Levo only Allie6 You don't convert T4 to T3 so you need the addition of T3.

    Is this a different endo from the one who started you on T3? If so then it's very wrong for one doctor to override what a previous doctor has put in place. We all know the reason is because of the cost of T3, but you have a proven need for it.

    Have you got any results from when you were taking T3? Let's see them to see what difference it made.

    What about vitamins and minerals? They all need to be at optimal levels for thyroid hormone to work and conversion to take place. Have yours been tested? What are the results? Do you take any supplements? If they haven't been tested then you need to ask for them to be done.

  • Thankyou yes I am seeing a different endo to the one who started me on T3 and results when on levo and T3 were

    TSH <0.02 (0.2 - 4.2)

    Free T4 20.6 (12 - 22)

    Free T3 5.6 (3.1 - 6.8)

    TSH <0.02 (0.2 - 4.2)

    Free T4 20.3 (12 - 22)

    Free T3 5.3 (3.1 - 6.8)

    Taking 75mcg levo and 12.5mcg T3

    Will post vitamin and mineral results now

  • Allie6 So you can see the difference the addition of T3 has made by looking at your FT3 result. How did you feel when those tests were done? (A darn sight better than you currently feel I guess!). There is your proof, right there in the FT3 results then and now, that you need T3.

    If you want T3 back again you need to fight for it, do what Shaws has said. Cost is behind the removal of your T3, but if you have a proven need for it then you should be able to keep it.

    Or you could tell your endo that if he wont prescribe it again then you will have no alternative but to source your own from the internet and continue taking it because there's no way any doctor is going to make you suffer for the rest of your life because they feel like playing God where your medication is concerned.

    Members can help you source it but to be honest, in your situation, I would fight tooth and nail to get it reinstated.

    Can you see the original endo again? Or write to him and explain what has happened and ask for his support in having T3 prescribed again.

  • Thankyou my new endo replaced my previous one who left the endocrine department and I felt better than I do now

  • That is the rubbish they've been told and it is definitely untrue when there is a clinical need. You have a clinical need when you cannot convert T4 (levothyroxine) into T3.

    T4 is inactive and has to convert to T3 and you are not. If we don't have T3 in our billions of receptor cells we cannot function.

    This video is by a woman GP.

    healthunlocked.com/thyroidu....

    The following is a link and you will see how many people have had T3 withdrawn.

    healthunlocked.com/search/w...

    If you'd like to sign the Petition re T3 and it is self-explanatory.

    healthunlocked.com/thyroidu...

    You can also see your MP and complain.

    You can also source your own T3 although it has been difficult later due to all the upheavals about T3.

    If you wish to source your own T3 put up a new post asking for information to be sent by a private message. No information is permitted on the forum.

  • Hi Allie6 - do you know if you have autoimmune thyroid disease also called Hashimoto's

    This is diagnosed by high thyroid antibodies

    TPO and/or TG antibodies

    If you have Hashimoto's then looking at food intolerances- usually gluten - going absolutely strictly gluten free can help

    But first, you need to improve your now really dire vitamins and get Levo dose back up, before reintroducing some T3.

    So are you now on 50mcg or back on 150mcgs ?

    Your GP should not be interfering, but I would suspect your vitamin levels became so low after the withdrawal of T3 (which you definitely need) that blood tests then suggested you were over treated.

    When vitamins are too low we can not use the thyroid hormones.

    Essential to get the vitamin levels back up with supplements first

  • Been told not Hashimotos by endo thankyou

    TPO antibodies 803.5 (<34)

    TG antibodies >2000 (<115)

    Still on 50mcg

  • Just shows endo is probably only "specialist " in diabetes, certainly doesn't understand thyroid disease

    You very very definitely have Hashimoto's

    With Hashimoto's it is very likely hidden food intolerances can be causing issues, most common by far is gluten.

    Changing to a strictly gluten free diet may help reduce symptoms. Very, very many of us here find it really helps and can slowly lower antibodies.

    thyroidpharmacist.com/artic...

    thyroidpharmacist.com/artic...

    amymyersmd.com/2017/02/3-im...

    chriskresser.com/why-changi...

    scdlifestyle.com/2014/08/th...

    Low stomach acid can be an issue

    Lots of posts on here about how to improve with Apple cider vinegar or Betaine HCL

    thyroidpharmacist.com/artic...

    Other things to help heal gut lining

    Bone broth

    thyroidpharmacist.com/artic...

    Probiotics

    carolinasthyroidinstitute.c...

    Email Louise at Thyroid UK for list of recommended thyroid specialists

    Louise. roberts@thyroiduk.org.uk

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