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Dessicated thyroid- tsh levels

Posted , 7 users are following.

charlenelynn
charlenelynn

Hi Everyone!! So for the past three months I've been taking 60mg dessicated thyroid, I used to take synthroid previous to. My levels of TSH during synthroid were 2.20 mIU/L and now after 3 months of dessicated thyroid are at 4.48mIU/L. My MD is bumping me up to 90mg of dessicated thyroid. Has anyone had similar experience and should the increase of 30 mg be enough to bring my levels down enough? I feel much better despite the levels showing high, so im excited to feel even better with an increase dose.

Thanks in advance!

:-)

1 like, 16 replies

16 Replies

  • cindy30745
    cindy30745 charlenelynn

    Posted

    Does this go some way to show that  the parameters of blood tests thyroid or otherwise can be so widely out?

    Why don't doctors listen to their patients signs and symptoms and take less notice of pieces of paper with blood 'results'?

     

    • charlenelynn
      charlenelynn cindy30745

      Posted

      Exactly. My doctor asked if I felt better and how I felt better. But if I hadn't of pursued the NDT myself then I'd still be on synthroid and feeling like crap.
  • shellyC19
    shellyC19 charlenelynn

    Posted

    Hello Charlenelynn:

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

    NDT's  most people are on 90mg to 180mg and they normally start you at 60mg or 1 grain.  So it is normal to bump it up a bit to find the right level and amount you need.  Then they draw blood again in 8 weeks.

    Any questions just ask,

    Shelly

    • cindy30745
      cindy30745 shellyC19

      Posted

      Why is NDT freely available in the US but not here? This is something that is fundamentally wrong - surely.

       

    • barbara98940
      barbara98940 cindy30745

      Posted

      It's because the British Thyroid Association believes synthetic thyroxine fixes everything. If you look at their latest policy statement whenever any question regarding NDT crops up they respond with 'not enough data', however as NDT is a natural product and nanufacturers can't make any money out if it there is no incentive for the manufacturers to sponsor trials to provide the data.
    • cindy30745
      cindy30745 barbara98940

      Posted

      This is uncanny. I have just received an e mail from someone who has said exactly the same! Anyway I wonder if it really is cost effective to prescribe the synthetic throxine when people do not respond to it positively and this means they visit their doctor more frequently and have endless blood tests done which may not have to be done if they were on NDT. Just a thought that's all.
    • charlenelynn
      charlenelynn cindy30745

      Posted

      I am in Canada, no one has ever mentionned NDT to me I did my own research and convinced my physician to let me try it! Even when I complained to my doc I wasn't feeling right and I thought it was my thyroid she did blood work and said oh your levels are fine :-/
    • cindy30745
      cindy30745 charlenelynn

      Posted

      Sounds like the situation that exists in the UK!!!!!

      Remind me again charlenelynn but what were your levels that the dr mainteined were  fine. Sorry but did you manage to get a print out of them/

    • shellyC19
      shellyC19 cindy30745

      Posted

      Hello Cindy:

      Since I am in the USA,  Maybe it has to do with your country allowing it to be in their formularies at NHS.  If they will not allow it in, they will not buy it and stock it.  It also is not a medication that can be licensed by a manufacturer since it is made from a pig's gland.  A pig is not able to be claimed and licensed.

      It is allowed in USA as our insurance plans do not have an issue with it.  We have different medical systems (private insurance based in USA),  and are not socialized Medcine as UK is.   Since we pay a co-payment for each med, the insurance plan has no reason to block it as we pay a reasonable co-pay and are not getting it free.

      It all has to do with NHS blocking it. Wish there was a way of changing that.

      Shelly

    • cindy30745
      cindy30745 shellyC19

      Posted

      Shelly that explains everything. We the poor patients suffer as a result.

      We deserve better. There seems to be so much anecdotal evidence to support the prescribing of NDT so why are we the voters being trampled on and expected to remain ill needlessly?

  • monsie92668
    monsie92668 charlenelynn

    Posted

    Hi

    What about your Free t3 and Free t4 levels?

    You must know that as well...

    I felt much better taking a high Tetroxin (T3) for too long, i was asking

    if I could cut down but I was told I had to carry on with a high dosage of

    T3... The result... I was feeling awful after 5 months. The Free T3 was

    very high. I know you are talking about not T3 but dessicated thyroid.

    However high dosage of anyt thyroid supplement has to be checked:

    TSH, Free t3 and free t4, i think...

    All the best

    monsie

    • charlenelynn
      charlenelynn monsie92668

      Posted

      Honestly I don't know if my t3 and t4 were tested it looking like only tsh was marked off on my blood work form. Hmmm
  • LayneTX
    LayneTX charlenelynn

    Posted

    Hi,

    l'm the same as you. My levels show higher but in normal range. I was taking 1 1/2 grains, but I'm losing weight and having trouble getting to sleep. Otherwise I told Doctor I have no other hypothyroid symptoms and I feel great.  The PA Doctor said they prefer TSH too be closer to 1. 

    But heck, if I feel better, then I'm not going to worry about it.

    I'm glad you posted this because I was thinking I'm the only one. wink 

    And of course, I feel so bad for others who feel bad and hope best for them.

    My PR Doctor wouldn't consider Amrour, but my blessed Rheumy let me change! I love her! 

    • charlenelynn
      charlenelynn LayneTX

      Posted

      I'm happy my physician was willing to let me go this route. I'm hoping the increase will help more I found I am putting a bit of weight on and feeling chilly so hopefully that goes back down with the increase but I have much more motivation to exercise now so that should help too. Hopefully the 30mg increase of NDT helps me feel better, but if it doesn't change levels much I'm hoping my doctor will up my dose again.
  • margaret21458
    margaret21458 charlenelynn

    Posted

    Hi,

    I'm new to this thyroid business.

    Can anyone tell me if a TSH level is at a point where I really need thyroid meds? My level was 2.36

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