Hypothyroidism and fibromyalgia

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I have been taking levothyroxine for about 2 years and since then have developed painful muscles and joints.  I have seen an endocrinologist, who added Vit D, and a rheumatologist who diagnosed fibromyalgia.  I don't really want to accept the fibromyalgia diagnosis, and can't help wondering whether the pain and exhaustion I feel is due to hypothyroidism  - or the treatment! My GP is totally unsympathetic.  I feel I'm just a nuisance to him.  Any advice, please?

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20 Replies

  • Posted

    Most of it is due to the thyroid medication. Most times you need natural medication and make sure to get levels check if lots of pain Mabe medication to low or to high. I'm on Nature thyroid but check out all replays under my name there's lots if great information especially from Barbara ( I love the way she explains it all) your on the right website to get some relief!!!!! B
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    • Posted

      I just can't stand to hear about people suffering the way I have suffered for 11 years😞 I am just now getting a bit of relief but still need medication any adjusting I pray all info helps🙏🏿.
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  • Posted

    Hi, Have you read what Vit D helps  with. It can take a while for it to get in your system. maybe if hes given you vit D you  were deficient in it. Well worth a readx
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    • Posted

      I've bee on Vit D for a while now and my levels have improved to about normal. I have an appt with my G P next month. Is it worth talking to him about NDT???
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  • Posted

    Here is my 2 cents worth: I agree, it is probably the Levo. When my good brand's patent ran out I was changed to an inferior one, I could hardly walk and yes, the Endo sent me to an "arthropod" who said I had rheumatoid arthritis. What baloney! When I realized that I couldn't take one more Levo because I thought it was poisoning me I changed to NDT Armour and my aches and pains dissappeared withing half an hour. 

    You could try a different brand of Levo if your doctor doesn't understand endocrinology. I would advise get off Levo, get on to a different drug like NDT Armour or Barbara's Thyro Gold and you will probably have to change doctors. We all have to keep doctor shopping as unpleasent as that sounds but you probably only have to go there once a year to get your prescription. My current thyroid doc is 200 miles away and I go once a year for a year's prescription.

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    • Posted

      Where is your thyroid doctor and what is his name I changed to natural thyroid 97.5 a lot of problems went away but after I sit u can barely walk it hurts like arthritis but still not as bad as before wen I used Levo. / any suggestions do you all think my Ned dosage is to low or to high
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    • Posted

      I am not very familiar with Nature-Throid 97.5 mg but I do understand that it is a new NDT (NDT = T4 +T3 and maybe other Ts). You may be suffering from the fact that the T3 in your medication wears off after about 6 hours (that's it's approx half life). This happens to me and I take another small dose (1/4 grain) half an hour before lunch, hopefully on an empty stomach. This gives me a little T3 boost for the afternoon and makes it so that I don't get sleepy, achey and pathetic when I am supposed to be functioning normally.

      My doctor is in California and I suspect that you are in England. If you are in the US then Kaiser Hospital will prescribe NDTs - although not all of their docs will.

      For what it is worth, my dose is minimal (1 and 1/4 grains) and when I wake up in the morning my legs are stiffer than normal and it hurts to walk. I go to the bathroom about 6:30am (when I awake), I then take my NDT and go back to bed for 1/2 to 1 hour. The next time I get up (for breakfast and the day) the pill has kicked in and there is no pain anywhere.

      My basic answer to your last question is, yes, you are probably undermedicated. Docs try and keep it to a minimum for good reasons but they don't have the time to fine tune your dose, this seems to be up to us.

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    • Posted

      Hello and thank you sooooooo much for the information I think that's exactly what happens to me I will ask him to try me on 1/4 mores d see what happens ( I'm in Dallas Texas well a suburb of Dallas Mckinney, Texas ) I will go to California if needed I have gone to doctors everywhere anything to save the rest of my life I wouldn't need to go in office much I can do over phone do blood work hereof needed
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    • Posted

      Please tell me your doctors name and number he's already familiar with working with others with same issues I have. I feel most doctors are just not familiar with working with certain people depending on what's going on with them with thyroid issues. They do what there familiar with that's all to it. I have a 4 year old with autism to take care of . I would love to know how it feels to not be in pain.
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    • Posted

      please give me your doctors name in california. I will go there to see him.
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    • Posted

      Well I was hoping to tell you to become a member of a Kaiser Hospital in Texas, get a GP and then get a referral to an Endocrinologist within that system, but apparently there are no Kaisers in Texas. San Diego would be your closest but you have to live within 30 miles of the hospital. I think you just have to keep "doctor shopping" like we all do until you find one who understands the principals of endocrinology. Even within my Kaiser I have had to move around five doctors and even now things are not perfect. You have to read a lot and decide what you need and then keep going to doctor after doctor until you get what you want.

      I am sorry that this is probably not the answer you want, it is far from a perfect system even for the people who can pay thousands of dollars in a private system.

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  • Posted

    If you have a quiet time. Try stopping the levo for a couple of days to see if there's any change. I suffered from increasing muscle pain/weakness and slowing. Finally stopped taking the levo as no other options left. Pain stopped after a couple of days. Levo 'does not agree' with some people.
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  • Posted

    I just switched to NDT, Armour.  I think I do feel better. Sad my GP won't prescribe Armour and said no indocrinologist would either.

    As for your pains, have you heard of Bowen technique? I wonder if it would help Fibromyalgia people. Look it up. It's a gentle kind of get your energy in your central nervous system going type of manipulation.  Really hard to explain. It's the most relaxed I've ever been in my entire life.  Helped my back aches.  I have Polymyalgia so not much helps those pains.

    take care.

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  • Posted

    Hi susan, I have been on levothyroxine for eight years and gradually I was in more and more pain and exercise is agony. Not sure whether it is related to the meds or the condition itself but I am certain it's one of the two (or both). I was diagnosed with ME (similar to fibro) and I too won't accept that diagnosis - it's a cop out in my opinion as they rarely look into the cause. My Gp also suggested taking max strength vit D but that was mainly from an energy perspective. My endo also asked me recently if I was suffering muscle / joint pain so I am assuming they are related.

    I'm hoping to come off meds completely (they think I was misdiagnosed), but if I can't I will definitely look into NDT as an alternative. I've heard so many people have improved symptoms by taking natural hormones instead of levothyroxine

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  • Posted

    Hello Susan:

    My name is Shelly and I am a nurse in the USA.  I have Hashimoto's thyroid disease since 1987.

    Once your Vit D level is good, your muscles will feel better if it was from that. make sure your Magnesium level is good too.  Vitamin D can be low in people with thyroid disease.

    Sometimes our body does not absorb, the thyroxine well from a synthetic thyroid med.  It may be due to the way it is made and fillers in it,  or your thyroid gland and the damage to it.

    Many of us can't take Levo, and I tried every medication ever made, but finally found the one that works on me. I am only on Liothyronine.  There are Natural ones like Armour Thyroid, Thyroid S and Thyroid W, and other synthetic ones, like Liotrix, Liothyronine.  The trick is being able to try them and having a doctor who can prescribe it.

    If you are in the UK, it is hard to get Natural ones, because the med is not on patent.  You can find it online and without a prescription.  I heard that certain people can get other meds like liothyronine via NHS.

    If in the USA, please ask your doctor for a different med.  You need to see if a different one helps.

    Fibromyalgia is a fancy word for muscle pain, and  all they can do is treat the symptoms but I agree it may very well be your thyroid, and the LEVO is not working well enough on you.

    Keep us posted on how you do,

    Shelly

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    • Posted

      Thank you everyone for your replies. I am in the UK. I saw my GP today and he wouldn't even discuss any alternative to levothyroxine. He didn't even give me a chance to tell him why I might want to change. He said he would refer me back to endocrinology but he didn't think I would get a prescription for NDT. He wouldn't support me if I bought NDT on the Internet. So I've booked an appt for a blood test so I have a baseline and I'm out on my own! I told my GP that I am very disappointed in his attitude. I wonder if he will see me again?
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    • Posted

      Some doctors are like this (due to ignorance or lack of education with thryoid issues). Hopefully the endo will be more helpful. Maybe in the meantime talk to another Gp? I found that even the more experienced doctors have little or no experience with NDT because it isn't given out on the nhs. Some will tell you that it's not available in this country. Private endos should tell you otherwise and give you proper advice (despite not having much money I decided to pay and see one just to speak to someone that isn't biased in any way by cost cutting exercises). Hope the endo is more helpful
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    • Posted

      Hello Susan:

      This is very sad that UK does not support NDT.  It is a fine medication and around way before Levo ever was. 

      You can buy it off the internet and many people do (i know a few ladies who are doing that), and I hear without a prescription.  Since certain meds are considered "Biologicals" like insulin is for a Diabetic, they have to make it available without a prescription.  In the USA you can go into a Walmart and buy insulin without a prescription.

      So get it off the internet and see.  If you  wish you may want to see about a GP with a better bedside manner/attitude. Your GP is basing his decision on what NHS wants and that is LEVO. However your body may not agree.

      Your health is important and you need to do what you have to.  It is a good idea to get the blood and then you will know for sure.

      Keep us posted on how you do,

      Shelly

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    • Posted

      Thank you all for your support. I'm hoping to move house soon so perhaps I shall find a more helpful GP. In the meantime I am grateful for your suggestions and I intend to follow up the web sites that you've told me about. I actually feel better now I know where I stand with the NHS. I'll keep in touch. X
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