Bewildered- Hypo and Now Fibro-what meds?

What a complete pickle and mind frazzle I am in. I think I have information overload! I am 52 years old ,20 years hypo (currently trying to get confirmation its Hashis) Ive been on Levo up until two months when I saw saw Dr P I had been researching NDT and T3 for about a year, got the STTM and Dr P's book and am now on Nutri Adrenal and Nutri Thyroid. Then because of an increase in body pain, cracking headaches, fatigue, knee tendon problems I have had for a couple of years I ended up last week at the Rheumatologist (after A & E and Xray and bloods for inflammatory markers) who now says Fibromyalgia....no one has ever done a good range of blood tests as are often mentioned here so I managed to get him to do some ie Vit D, B12, antibodies etc and see him again this Thurs. I also have some Genova tests to do for Adrenal/Saliva and thyroid which I got before seeing the Rheumy because of the change of meds with Dr P. I also ordered some T3 after my GP refused to prescribe it basically because I believe the fibro symptoms are caused by long term undermedication for the thyroid condition or I just dont convert. I am so tempted to try with a small dose of T3 added to either going back on T4, staying with the Nutri Thyroid, or should I go on to Armour or such. My facility to balance all the info and find a safe way forward from here seems to elude me....I go back to my STTM book and I just cant take it all in!!! Meanwhile I am self employed and cannot work effectively.......trying to appear 'normal' for my partner but my mind is in a whirl. All the doctore are offering are anti deppressants (which I came off of after 9 years a couple of years ago, dont want to go there again) NSAID meds. Currently I do not want to take any of these meds and am going gluten free, low carb high fat and looking in to gut health.......even more info. Sorry for the lengthy blurb but I have always felt quite proactive about tackling any problems in my life and I have just hit a wall. Any help anyone can offer would be very much appreciated.

9 Replies

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  • Hi I sympathise with you , I am 50 and have had hashimotos & Pernicious anaemia 17 now , probably longer. It's horrendous at times. Anyway I just orders Isabella wentz thyroid pharmacist, ROOT CAUSE book for hashimotos thyroiditis.

    It's excellent.

    Take care

  • Hi Jobeth, thank you for your reply. I get the Isabel Wentz blog. There's just so much info out there and I realise how better off I am than those before the Internet age but it can become overwhelming. Best wishes with the book.

  • Hi imagisal - Have you read Dr P's book? His belief is that, as you suggest, fibro is simply untreated hypothyroidism. I firmly believe that too (though I know there are others who think it's a separate illness, so this can be a contentious issue).

    In my case, I was first diagnosed with ME/CFS way back in the 1990's, then with fibro around 8 or 9 years ago. But when I got some other symptoms (eg. hair loss, etc) I did some googling and found that hypothyroidism "matched" all my symptoms. I, too, consulted Dr P and I'm now self-medicating with NDT. I am noticing some improvements but I've been left ill by the doctors for so long I think it's going to take a very long time to get anywhere near right again.

    So, I'm no expert but it sounds to me like you're undermedicated and that the new pains are a symptom of worsening hypothyroidism. What did Dr P advise? Are you going to start on NDT? If you've stopped levo without starting NDT then you could certainly be undermedicated.

    I'm sure there will be people along soon who know more about this than I do. Good luck!

  • 3 days agoimagisal - placing in reply to you section

    Hi Caroline, thanks so much for taking time to share your experience.... I think you are right, when it's a long term situation the recovery is going to be lengthy also. I am due to follow up with Dr P but got sidelined by being totally laid up with leg pain . I understand that the Nutri thyroid is a weaker type of NDT so I think I need something stronger.

    I'm glad you are having some improvement, it has obviously been a long time coming so best wishes for continued good results with the NDT

  • Hi Caroline, thanks so much for taking time to share your experience.... I think you are right, when it's a long term situation the recovery is going to be lengthy also. I am due to follow up with Dr P but got sidelined by being totally laid up with leg pain . I understand that the Nutri thyroid is a weaker type of NDT so I think I need something stronger.

    I'm glad you are having some improvement, it has obviously been a long time coming so best wishes for continued good results with the NDT

  • Nutri thyroid contains no hormone. They have been removed. So you certainly do need something 'stronger' - you need something with hormone in it.

  • imagisal- 3 days ago - placing in reply section.

    Thanks greygoose, I did question this with Dr P and he said it did but on the bottle it says not. I started on T3 this morning!

  • Hmmm... rather hit and miss, then, isn't it. Because if it does have hormones, we need to know how much we're taking. And how much we're increasing or decreasing by. I did try taking it. Made me ill. Didn't like it at all.

  • Thanks greygoose, I did question this with Dr P and he said it did but on the bottle it says not. I started on T3 this morning!

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