Seen By The Endo

Well I have been seen by an endocrinologist and to be honest I don't know how I feel.They were very thorough but not convinced all my problems were related to my thyroid. Since I had been given Levo I said it was like I was being poisoned. My bloods were taken and I am going to get my results soon and depending on how they come back I may be given some options. 1) stop levothyroxine altogether 2) try another type of levothyroxine 3) try levothyroxine and cytomel 4) try cytomel . Can anyone give me some advice please.

9 Replies

  • It really does depend on the person. Whatever you do, take it one step at a time or you risk missing your 'perfect dose'. Some people find adding a little t3 is enough to help. Others a well on a different type of thyroxine or NDT. Others require T3 only, at least for a while.

    I personally needed T3 only for a while. I hope to be able to add some T4 one day. I'm sure a combination is best for most people that need T3 but even many of them need t3 only for a while.

    It is very important to check your serum iron, ferritin, folate, vitamin B12 and vitamin D. If these are not optimal then you may not feel well on any dose or any combination. Don't go by the NHS reference ranges either (except for vitamin D). Serum iron needs to be well in range, ferritin between 70-90 for most people, folate above 12 and vitamin B12 above 500 (although even that is no guarantee that you have enough and are able to use it).

    I wish you all the best, whatever treatment you end up with :)

    Carolyn x

  • thanks Carolyn, I am afraid that they will take me off everything as i know with all my symptoms I am hypothyroid but what did concern me is that they did not feel my results were that bad so therefore I could do without medication and I would be back to square 1. I did say to them that if that was the case I felt very very sorry for people who are way off the scale as they must feel catastrophic. They said that by the time I was put on 100mcgs all my results were back within normal ranges. Then how come I felt so bad and became suicidal 9 months down the line. I am going to fight for Levo and cytomel combo as i did confess to taking a bovine supplement and feeling much better and a lot of my symptoms subsided. I must admit the Doctor was lovely and very thorough and open to t4 and t3 treatment. On pressing for NDT was told that it would never be considered. Also the doctor stated that synthetic drugs were the only choice of treatment and until further research showed that NDT was a better choice of treatment synthetic drugs would be the only course of treatment offered.

  • Those *&^** pharmaceutical companies have brain washed that doctor.

  • However we could ask "Who makes desiccated thyroid medicines?".

    Forest make Levothroid (levothyroxine) as well as Armour. Without knowing their financial and marketing secrets, maybe at least this particular member of "pharmaceutical companies" doesn't really care which you take?


  • Interesting. Was it on this forum that someone said to me that the pharma companies make more money from the drugs they can sell for treating the symptoms (depression, blood pressure, etc) than they do from T4/T3 and maybe NDT, as they are all generics. I don't know. I just know things have to change.

  • Sorry, I'm leading the conversation astray. My opinion, fwiw, is that either T4/T3 combination or T3 would be more like the body's natural production. Maybe using a different brand of T4 if the one you are using doesn't suit?

  • I agree with all you have to say but to be honest as I have said in other posts because I am having to nurse my mother and care for my severely disabled sister, I have to function at some kind of level as they are dependent on me. Once I am able to do this and everything becomes more even I will have the will to fight for myself and others for better treatment . I know that in no way I am suffering as much from this disease as others and my heart really does go out to them. I know I am one of the lucky ones in that I have been diagnosed and I have been given a choice which many are not given.I have sent my letter to the Scottish Parliament and I will continue to support other natural sources of thyroid as it does agree with and help so many. On my own journey for a normal life with my dodgy thyroid i may have to go down the road of self medicating again with NDT but for now I have to accept my lot as I am too tired to fight anymore and need my strength for my mum and sister xxx

  • Can you consult Dr Skinner in Birmingham? He was inadvertently mentioned on the first Scottish Thyroid Petition video as having helped Lorraine Cleaver. I think there is a strong chance he will be able to help you based on symptoms and history, with reference to blood tests, but not complete reliance on them. He is considered a maverick but he is actually practicing the art of medicine. I personally know 8 people who is has helped significantly.

  • thank you misslily I will look into this xx

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