No Thyroid Gland?!!!!!!!!!!

I have been told by my endo that I no longer have a thyroid gland. Strange, I had one when I came into this country 6 years ago! So, I had Hashimoto hypothyroidism and no one told me? I asked. She shrugged. SHRUGGED! I have pleaded with endo to allow me to be on a different medication. I have been on Levo 100 mcg for years. I just started T3 last year, but she wants to take me off of it because my tsh was in the toilet. she said -.01. But, I felt better so refused to go off of it. Now, my weight is going up, my skin is dry, the hair no longer grows on my legs. I have begged them to let me try desiccated thyroid but she says it isn't for sale in this country and she doesn't recommend it. Levo, is a fine medication she says. I'm at a loss, and I am so tired of 'just being'. I want to live. There has to be something better than this. Please help.

37 Replies

  • It is relatively easy to buy and import NDT and it is legal to do this.

    However we cannot buy it here in the UK without a prescription and it would appear that most doctors/endos are unwilling to prescribe.

  • Thank you for replying. How would I know how much to take?

  • Christielle, when you get your NDT post a question and members will guide you.

    You'll probably need to build up to 2 grains (120mg) NDT.

  • I saw both my Endo and doctor last Friday and asked about T3. They both said not recommended in guide lines by British Health as not enough scientific proof about T3. They also said they knew a lot of people took it and NDT and that was up to them, their choice. Obviously they can't be seen to be condoning it - maybe get in trouble. It really is up to the individual and bith easy to buy online.

    I bought some T3 only took a tiny amount but it really knocked me for six could hardly stay awake, no improvement after two weeks so stopped taking it, but then I only wanted to try a small supplementation as I think I am lucky to be converting well on T4. Having said that I suffer terrible fatigue and have for the 18 years I've had throid problems. Feel sure if I lived in another country there would be more help.

    As I say your life your choice you can't always expect others to make your choices it's suck it and see. Who knows T3 or NDT could turn it all round for you unlike me and I hope it does. BTW I have no thyroid left either just have to make the most of what you've got - life more than some. Have a good day.

  • order NDT for yourself

    what the endo is saying is total nonsense

    Both she or your GP can prescribe NDT but they are all under the cosh of idiots at RCP who must have a vested interest in the production of Levothyroxine because far far too many people simply are not well on it yet after a year on NDT they are very much better

  • Thank you all so much for your replies. I feel so much better. Can anyone direct me to a source of NDT that does not require a prescription? And if so, Should I start with 1 grain? I am currently on 100 mcg of Levo and 20 mcg Liothyronin. xx

  • I can't afford the moon. Who does everyone use for a lab? x

  • See if your doctors will do the testing and monitoring as you self medicate with NDT. It will save you a load of money.

  • Thank you for that info Spanglysplash. Could someone please pm me and tell me how to get NDT from a reliable source that does not require a prescription?

  • I'll pm you where I get mine

  • Thank you so very much

  • What is NDT? I'm sure its easy thing but when you have pain and many other problem yhen we are looking for answers.

  • Just want to do you know if you still have a thyroid gland or not? I've diagnosed Hashimotos for 30 yrs and no doctor has ever said anything to I'm interested to know how you can tell & what does it mean?

  • It was my endo doctor who told me in January that it was gone. She said my body attacked it and ate it away. That's all I know. When she palpated the area her look of concern was quite alarming. I asked what was wrong and she said 'your thyroid gland is gone'. I was quite upset. I said what do you mean it is gone? I had it when I came into the UK. You mean all this time I told you I didn't feel good and my complaints were not addressed my body was attacking itself? How could she have missed this? I asked what could we do? She said, just keep on your current regimen. Nothing to be done now. What?!! I was horrified, and at that moment, all my complaints of not feeling well and feelings that something was not right no longer made me sound as if I were a whinging incompetent idiot or a complete nuttering hypochondriac. I felt totally let down and ignored, and still do.

  • Just for the record, I had no idea I had Hashimoto's, but after further examination by another so called specialist, they concurred, I no longer have a thyroid gland :(

  • If you have Hashimoto's (which is best confirmed by having antibodies checked and your endo should have done it to start with) it does indeed attack and can destroy your thyroid. However, to confirm it is not working you should ideally have a scan as some people have small thyroids in the first place anyway and I would not trust any 'specialists' telling you anything on the basis of palpation only.

    And finally, even apart from the thyroid itself, there is more to Hashimoto's in relation to your whole health and wellbeing that you need to educate yourself about than you will ever find from any endo or GP so start reading and keep reading till you can take control of your life again. Best of luck!

  • I will, thank you samaja xx

  • So sorry you having such a bad time, but it can get better. You won't be let down and ignored here - you will get all the support you need to take matters into your own hands if that's what you decide to do. The wonderful people here on this forum are helping me every step of the way :-)

  • Hi Christielle, the same things happened to me but that was back in the dark days. I went years on Synthroid not knowing I had hashimoto's and probably suffering attacks without knowledge of any antibodies....never tested for. If that doctor weren't dead already........

    This website is a lifesaver for people who are suffering from this particularly distressful situation. Now there is access for self help and all you need is a little desperation or a little courage:)

  • Sniff. I have been crying all morning and am all cried out. I have a reason to smile now as I see there must be hope on the horizon with all you good people. Thank you so much for your help. I am ordering some meds this afternoon. Looks like it will take a while to get. I will just try and keep my head above water whew xxx

  • I understand. This is really a crime in my opinion. I am in the U.S. so can't help with the practical application but people here can. I've ordered my own T3 for the past year and haven't even had blood tests. Your body tells you when things aren't right. As you have found, doctors try to tell YOU how you feel. Believe me, you know better.

    If you can possibly get certain tests done, it would be helpful since ferritin, folate and cortisol are important to assist the hormone to work. The b vitamins are very important with extra B12 would be no harm in starting right now and also vitamin D3 is almost assured you are deficient.

    Best wishes!

  • Im going to order these books right away. I am deficient in Vit d. Im on a supplement. Thank you so much Heloise xx

  • Completely agree with bobsmydog, go well, keep educating yourself and your health will gradually improve.🌺

  • Thank you everyone. I just learned that Gluten is in Armour? I am allergic to gluten :(

  • No gluten in Armour.

  • Really? Wow! one site said it had gluten! thank you!!

  • She is a stupid bitch.

  • You can buy it without a prescription. I'll PM you.

  • What uts good for.

    I am looking around for help.

    For my aches.pain. tiredness full pain my difference even if I stretch them.

    My whole day aches,fingers nd wrist I could do anything but started to cry to myself and saying what is going on.

    Absolutely no answers was told to just take co codomal but its strong and doesn't help with finger pain. Can't sleep,walk and put on so much weight. Is there any one from London nw9.

    If u guys know of any drs that I can get second opinion or refer myself.

    Thanx in advance

  • Thank you so much Archipoeta53. I have had so much support in just a short time from you all. I am so very grateful xx

  • We do like to help.

  • Christielle, you've had loads of good good advice here, but I just just wanted to chime a a person without a thyroid. It's shocking how negligent and cold hearted doctors are, but don't worry, there is plenty of life left without one :)

  • Thank you so much SilverAvocado x :)

  • Hi Christielle, I can't help with your problems, but I did want to ask - is it not possible to sue these docs for medical malpractice if you have complained about thyroid problems and they have ignored them to the extent that you now no longer have a thyroid? That really seems like you'd have a case there.

    Anybody else here in the same boat ever wondered about suing? Or even tried to do it?

  • Your doctor is dangerous..find another.

  • Faith63, thank you. I have tried. Since I go through the NHS I have been told that this endo is the one I am stuck with. I think though, that after all this, I will try again. Only this time, I have ammunition. This time I am armed with the fact that I no longer have a thyroid after complaining time and time again that I don't feel right. x

  • who would I contact in this country to complain about how I have been treated?

You may also like...