diagnised seven years ago and now symptoms are returning

Posted , 4 users are following.

This discussion has been locked due to a period of inactivity. Start a new discussion

I have been on synthroid for 7 years for about 8 months now am having pain in my feet and hands have lost a lot my skin is very dry I think that it’s thyroid related but my go won’t do the tests. Every day I am suffering. I am in 0.088 of synthroid. I have had back pain for some time now and I wonder if it could be related at all to hypothyroidism. I have read that taking Cytomel can help some people. So fed up with my dr not listening  I am havibg night sweats as well he only will do a tag test which comes back normal

0 likes, 22 replies

Report

22 Replies

Next
  • Posted

    Levo didn't for me at all. Made me do sick I don’t think it should ever be prescibed for anyone.

    You could ask your doc to switch you to an NDT. 

    I don't know much about cytomel, I don't think we have it in the US. My undestanding is that its synthetic. I don’t think the synthetics work right.

    ThyroGold is a natural bovine dessicated glandular. You can purchase without a prescription via the internet. It is very good and bovine is closest to biological ratio if T3/T4 that you'll find.

    I was so screwed up after the levo, I had a tough time tolerating anything and went to essential amino acids. They aren't perfect, but they don’t trigger the immune system and I don't have all the side effects I was getting from the Levo.

    Report
    • Posted

      Thank you for replying to me  I am going to the doctor Thursday and will question him about switching to the natural thyroid. I remember when first diagnosed he wasn’t keen on it  but my pharmacist says some people do better on it. I live in British Columbia Canada so the Cytomel is a thyroid drug some people are prescribed with synthroid. I will look up the internet site and read about thyrogold. Most people are referred to an encronologist who specializes with thyroid troubles but my doctor has a real problem referring he thinks he can deal with everything. My pharmacist told me that I need to get the t3 and t4 tests along with tsh. I started taking a good dose of vitamin d as well. And bought something called  priorin which is supposed to help with hair loss. Yes it doesn’t make sense with these synthetic drugs when the real thing is out there. I wonder if it’s just easier for doctors to prescribe it. Everyone’s put in the same mold  but  we are all different and what works for one person doesn’t work for the next I will ask my doctor about your suggestions. My feet feel like they are frozen like when you stay in your ice skates for too long very uncomfortable to be dealing with this every day. Thanks again for answering. 
      Report
    • Posted

      Glad to help. Hooe you have some success. You might consider switching docs since your GP  is so hesitant to refer you to an endo even though you have a long history of thyroid disease. He is doing you a disservice by not referring you.
      Report
  • Posted

    Go to an endocrinologist if this doctor isnt one. You need hormonal testing and not just thyroid hormone tests. You might need an increase in dosage. But you should also go to.a hand specialist and foot doctor sometimes it takes more than the right dose to fix hand/foot pain.
    Report
    • Posted

      I never thought of needing hormonal testing. Thank you for that  idea. Yes I am going to ask to see a endocrinologist it’s about a years wait to see one here. I am icing my feet and then applying heat. Ime pretty sure this is thyroid related. I have been reading thyroid mom website. Many suggestions about vitamins to help thyroid but a little uncertain if I should start taking these. Thank you
      Report
    • Posted

      Take the vitamins esp bcomplex. Have your B12 and folate tested. Deficiency in these vits can cause nerve damage which can first appear in hands and feet. Neuropathy. You need to take methyl12 and methylfolate but get tested first. This is common in thyroid disorders and thyroid replacement is not enough. Did you have A1C and blood glucose tested recently? Prediabetes can also cause foot and hand pain...
      Report
    • Posted

      Your right it could be pre diabetic neuropathy I have had testing fo diabetics which showed that my blood sugars were a bit high but lately have been okay. I wonder should I ask fir t3 abd t4 and hormone testing. Also a a1c test again. I talked to my dr before about adding Cytomel to just see if it helps me and he ignored  that suggestion.  I will ask again. I am taking pregabalin so you would think that if it were neuropathy that would help   But possibly could increase the dosage. Hopefully when I see my dr tomorrow he will order tests. 
      Report
  • Posted

    I can't believe that everything wrong with you is due to your thyroid. I went through things like this for several years, turned out I had myasthenia along with the Hashimotos. Had a doctor like yours, worse thing I did was to stay with him too long. Use Levo and Cytomel today and feel great. Tried the "real" stuff, big disaster, but I know people who do very well on it. You do have to watch quality and consistency though. Based on my experience and your description I would recommend you find a new doctor, one you have confidence in.

    Report
    • Posted

      Have not heard of myasthenia I  looked it up and now I know. Yes I have had this doctor for 25 years cannot get a new doctor as none accepting new patient s here it’s gettibg pretty bad. I would like to try something different like Cytomel  to see if it helps I might have neuropathy going on in my hands and feet. Hopefully when I see my doctor tomorrow he will listen to me and order some blood work. I must have an autoimmune problem but I know it can take years to get a diagnosis. Thank you for your reply I am glad that you finally got a diagnosis. Must have been so frustrating. I am now going through what you went through. 
      Report
    • Posted

      I noticed you are from BC in one of the other discussions, a classmate of mine is a GP in Victoria trying to retire but his group cannot find a replacement. His practice has a long waiting list and he was saying there were no GP’s being graduated because the pay was to low. So, you are lucky to have a doctor at all. So, you should be looking for referrals to specialists instead, both an endocrinologist and a neurologist to start with. I don’t know where you live in BC but a larger practice with many specialties is best. Probably Vancouver? I travel from Alaska to Seattle at my own expense 3 to 4 times a year to get treatment at a clinic with more than 200 doctors. But it’s been worth every penny.
      Report
    • Posted

      Hi peter yes I know I am lucky to have a doctor as I have friends that have to go to walk ins whenever they are sick I live on Vancouver island in Nanaimo. I went to my dr recently and he said all my blood work is fine so at this time  he won’t refer me. So will carry on. There are a lot of clinics here that have doctors in training.  Many will be retiring in the next 5 years our neurologist here recently retired so people are being sent to Victoria   I just spent a few days doing g yard work so am using ice and heat as my back is so sore. It sounds like you have got everything under control with having a clinic in Seattle to go to. It would be worth it to have the peace of mind with finding a doctor that dies he tests. I guess eventually the wait and see attitude my doctor has  will Bring results in the end. Have read so many peoples stories that say it takes years to get a diagnosis. I would fit into that category at this time. Take care. 
      Report
  • Posted

    Definitely try T3/Cytomel it is AMAZING when taken with Levo. It is available in USA.
    Report
    • Posted

      It wouldn't hurt even low dose to start. It'll give you a boost without waiting an eternity for T4 to convert to T3 and hopefully get into your cells. Ask again.

      Report
    • Posted

      I wonder with ordering Cytomel how do you know where to order from  in the us  How do you know what’s in the pills with dyes and fillers compared to the pills the doctor would prescribe through a retuable pharmacy. Here in Canada it says to mail order a prescription you have to provide a  copy of prescription before you can order it. There must be many places to order from in the us. 
      Report
    • Posted

      I can get Cytomel or generic at most big chain pharmacies in USA. Don't have to do mail order. Just walk a few blocks after Doc sends rx to pharmacy.

      Report
    • Posted

      You have to ask for it. Big chain pharmacies and even small pharmacies have them. 20yrs ago a very knowing endo doc gave me a RX for Cytomel but my pharmacy didnt have them and others had brand only but they were expensive and I was starting new job and didnt have Rx coverage. Then went to different doctor altogether. But I wish had pursued it. Kept the Rx forever even though it was outdated.
      Report
    • Posted

      I live in bc Canada though where  you have to have a prescription from  doctor to get Cytomel. I have had replies that you can order Cytomel from the states but how does a person know a reputable place to order from. My dr says that my tsh and thyroid levels are normal and won’t give me a prescription for the Cytomel. It’s so annoying I just want to try it to see if it helps me to feel better. There’s a lot of info saying that a lot of doctors will not treat patients that are having problems because they only rely on the tsh  if it’s normal that’s  all they accept. Even though the person is having hair loss and aches and pains and Just not feeling well. I think that the stress of going  month after month  with no resolve adds to the illness. Wears you down. Can’t get a new doctor as no doctors are accepting new patients here  which is  a real problem. 
      Report

Join this discussion or start a new one?

New discussion

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up