Hi everyone. Started my desiccated thyroid. I wanted to
Ask advice about how to tell my doctor I have switched to DT against her wishes?
Desiccated Thyroid: Hi everyone. Started my... - Thyroid UK
Desiccated Thyroid
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Christielle
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Well done Christielle on taking a brave step. I wish you well on your journey to good health. I have yet to take that step.
With regard to your doctor, just take a deep breath and explain. If you want him to monitor you and continue to do your bloods, make sure to ask him.
Alternatively, just write him a letter.
Flower007
Christielle in reply to
Thank you Flower. So very much xx
That's what I have done I sent a letter explaining why I have gone on ndt so that when I go tomorrow it won't be a surprise and hopefully I will get a prescription, will keep everyone informed. Let me know how you are on ndt
Hi christielle, It would be good to keep your partnership going with your doctor IF YOU CAN. It's just that their demands are often to your detriment. And as partners you both have to agree as to what really works for you.
You understand the position he is in but, yet, it is so important that your health improve and much as you would like to follow his recommendation, it is difficult knowing the possibility of feeling better may be within your grasp and you can't be asked to sacrifice your health in order to follow the rigid rules set up by the NHS. Especially when you have (I have anyway) heard of patients who were sliding into a downward spiral of weight gain, brain fog, pain along with changes in appearance, which should not be, on a current treatment. But with a change in their treatment, they began to make headway in ridding themselves of those symptoms. NDT has been a tried and true treatment for one hundred years and while much research has been done, finding how other hormones like adrenal glands are affected by the thyroid, it turns out to be a more complicated condition than it seemed.
I don't know if you can use any of this but I'd try to find out what his problem might be if he refuses any of your requests.
You could remind your doctor that they are advisor's only and you have the right to do what's best for you!!
Either give it a month and go in telling GP how fantastic you feel or don't tell GP.
My GP swears blind that NDT is no good and yet on levo I was awful and on NDT I am super woman. They are blind and ignorant and won't see what's in front of their faces. So you could always not tell them. You should tell your phamacist they need to know for contra- indications.
I need a new Doctor to give me a prescription for Amour Thyroid as mine has retired could you please give me any idea how to get another doctor that understands i live in Sheffield Area 👍🏻
Grannyirene, Won't the GP replacing your retiring GP continue your NDT prescriptions?
If not, you'll need to contact GP surgeries in your area and ask whether they will continue prescribing NDT before you register with them.
This link shows GP practices prescribing NDT and T3 in 2013/2014. It may have changed and practices which prescribed NDT may have stopped doing so, but it may be a starting point for you.
healthunlocked.com/thyroidu...
Is there a list of surgeries for Scotland?
No. If anyone can find the base data, then I will be happy to process it into a similar form.
in reply to Redditch
Can I ask you, and others here doing great on NDT, which brand you are on?
Could anyone please help me how to get NDT in the uk ?! Thank you
in reply to Susi1691
I believe it's not possible in the UK without a GP prescription (rare).
Good luck
(edited by Admin in accordance with the guidelines).
You buy it from abroad, you cannot buy it in the uk. You are allowed to buy meds from abroad for your own usage and also for the usage of others in the same household.. You will be charged vat on any meds costing more than £15 ( if customs stop the package) and they will also levy a handling charge of £8. We call the handling charge a ransome fee. 
Xx. G
Thanks everyone. I just wasn't sure how to handle the doctor. I mean what do you say when they ask how you are obtaining it? Ugh. xx
in reply to Christielle
The truth. He knows you were unable to obtain it on prescription.
Stop freaking out Christielle, you will be so fine. You have already done the hardest part of making the switch to NDT.
Good luck, flower007
Christielle in reply to
Sniff. Thank you. Everything feels so raw and each and every problem feels like an insurmountable task sometimes. I'm hoping that will all go away with the NDT
in reply to Christielle
Hi Christielle, if you're not getting anywhere on Levothyroxine what are you supposed to do? I just tell my GP about all the drugs I'm obtaining online, she was just shocked how much cheaper they are than what the NHS is being charged! I get Liothyronine, NDT and hydrocortisone off the internet. My GP won't fund NDT or Liothyronine. My GP was fine, she knows I do a lot of research and I'm very able and confident to manage my own health. I don't even get the useless blood tests now, find by me!
I don't tell my doctor. He knows much less than I do about my body, how I'm feeling and my condition. If I had left it to him I'd still be in bed with him telling me it was all in my head. I read every book and paper and self medicated until I found an endo that would prescribe me NDT. It was a massive risk but I am truly well and absolutely no thanks to my GP who believes there is no benefit from NDT even though I am living proof that it works for me.
I waited for 3 months when I switched my t3 up and my levo down, I went to see my gp about something different, she commented that i had not been in over the past three months...yes I was a regular visitor. That is when I explained my changes she asked how I was I said fabulous she told me I risked osteoperosis, and I told her I understood but given the choice between loose my job home etc I thought the risk was worth it. She made some notes adjust my levo prescription down and that was that. She did ask where I was getting the T3 from I told her online, she just said that they are not allowed to prescribe due to local health board restriction I said that was fine I would continue to buy it myself. I said I would keep them in the loop regarding tests as unfortunately we can only get the tsh in wales. Dont worry about it calmly state your reasons, your doctor may surprise you. I think every other patient they have is buying stuff online so it wont be a surprise to them.
Christielle in reply to
Thank you so much birdsong
Where can I get the MHRA info. I'm in the same boat. Have been on Armour for a couple of months (via private specialist) and I need to ask my doc if she is willing to prescribe.
I simply tell them that I was so desperate that I had no choice but to buy it online. In my experience they never ask exactly where from, internet and underworld are interchangeable terms for them! We have a little discussion about the balance between living longer, but life not being worth living, or taking a risk with the NDT. Only one out of perhaps ten GPs and hospital docs that I have talked to over the years has actually got really excited. I pointed out that if I were a smoker, or drug addict I would get some sympathy and she said, well, true, but that is addiction. I never saw her again.
The most common response is that when your labs come back they tell you that your TSH is dangerously low, and you MUST stop the NDT. In the days before my local lab tested T3 automatically if TSH is suppressed we used to have a discussion and I would agree to lower the dose if T3 came back well over range. It never did. I feel at my best with T3 around the top of the reference range.
My current GP, bless him, is just lovely. When I told him all about it he said 'I am so glad for you that you have found a solution for yourself. You are not the only patient I have for whom Levo doesn't really work and I am happy to see you well.' He tests when I ask him to, which isn't often because half the time the results come back to a different GP and I get panicky phone calls.
I was hoping that he would find a way to tell his other patients about NDT, but he clearly feels that he would be the subject of a professional witch hunt. I settled, in the end, for telling him about this group. I told him how great and supportive it is, and how much information I got on living with the disease. He wrote down the link, but whether he actually passed that on to anyone else I don't know.
That is a wonderful story. Thank you.
Hi Christelle, I have read your post and the replies you have had and I wondered if you minded me asking why you have changed to desiccated thyroid? What were you on before? Why the change? I am on levothyroxine and have an underactive thyroid and if this is what you had I am interested to know why you have switched.
Philly2748
Hello Philly. I am happy to answer. In America my thyroid was in check. I didn't feel 100 % but I felt better before I came to the UK. I had a thyroid gland when I came here. My doctor in the states wrote a letter to my next physician so I could get my meds. She happily complied. As the years have gone by here I began to feel worse and worse. Flab started building around my waste. My singing and art and writing suffered and then recently I was informed my thyroid gland was gone. So I had Hashimotos and the doctor never informed me. She shrugged in the office that day like it was of no concern to her. I was devastated.
Since joining this site I have found such support and have also educated myself. I realized that the Levo here was not right for me. That, and every single time I went to the chemist, it was a different brand of Levo, so no consistency. When I found out I was allergic to gluten and dairy last year I didn't realise my Levo could contain gluten. Through the kindness of others here and their support and after taking charge of my senses, if not my emotion lol, I decided to try NDT. I have been near to breaking point with my thinning hair, my bad skin; the horrible fatigue. So much so I was near to ending my life because of it all, then add in my failing marriage and how bad I feel. On top of all this I am bipolar but refuse their medicines and I exercise to control my mood. (Hence the upset that I'm gaining flab even though I use a treadmill, an eliptical trainer and aerobic CDs). I haven't taken a mood stabalizer for over 3 years. They took away the light behind my eyes. Then I realised, if I can go without those meds I have the strength to go it alone and get rid of doctors who tell me I'm ok when I know my own body well enough to know I'm not. I decided there must be more to life than this. Time to stop feeling so darn sorry for myself. These damn doctors are killing me slowly! Well no more! Today is the first day in weeks I have felt like recording a song. Yesterday I did a bit of pen and ink art.
Though my body isn't feeling better yet, as I'm new to NDT, I think perhaps the cloud around my head is thinning and lifting. Today I want to live. And if this feels like too much drama dripping from my pen, well, life is drama. We are all in the the centre-ring under the big-top and I intend to me my own ring-master! Or at least the funniest clown ;).
Love to you all, and thank you so much for all of you who have replied and have helped me to see the light Xxx
Christielle, you have quite an amazing story yourself. I hope you can add a great testimonial very soon. I think you should look into T3 being used as treatment for bipolar. I think it was an accidental finding. Also, I've been posting videos by Dr. John Bergman. He is a corrective chiropractor and states that bipolar and Parkinsons conditions may be caused by the loss of the neck curve which is very important as the site that connects the body to the brain. It's worth hearing what he says. I've watched about ten videos by him and have been reading health articles almost daily for twenty years.
youtube.com/watch?v=T_Re4ja...
Around the 8 min. mark he goes into this neck problem.
youtube.com/watch?v=BTNhlkO...
WOW! this is great info! thank you so so much! Today I can report that I have had no outbursts. My mind is starting to clear. I have tears in my eyes as I type this, and I will never go back on levo again. It was killing me. Thank you again Heloise. This is fabulous!!!
Knowledge really is freedom Christielle. We have to free all those poor souls caught in the vise of the medical establishment. As this man and many others are trying to tell us, we are being used for profit and that comes from us remaining ill. Good health to you!!!
If it weren't for all of you, I don't think I would be here now. Thank you Heloise. I think it would be great to have a type of conference each year for Thyroid sufferers with different speakers telling their stories and those health officials that DO believe in treating us the right way. Is there such a thing? I would be so interested in helping start something like this. If there is already such a thing, I want to take part! I want us all to feel whole and human again. I want everyone to be lifted from the eternal fog that we suffer from, the hair loss, the weight issues, skin issues, ibs, bipolar, depression and the list just goes on. Now I have dermographia. ahhhh lol! I want all those suffering to become informed as we have and walk into the light of health and be with people that will not let them suffer. ok, I stepped off my soap box. lol 
Can we start such a thing?
Thanks for this post. I am about to start NDT myself after struggling for ten years on Thyroxine and constantly being told everything is normal. This community has really helped me to have the confidence to go for it. I doubt it will rescue my marriage - my husband is moving out on Friday :'-( - but it just might save the rest of my life.
So what happened to the 'in sickness and in health' bit of the vows? sorry to hear he is moving out, but sometimes its just better to get on with your own thing.
Last weekend I went to a festival, I knew my ex husband would be playing there and eventually I went up to someone with the same mannerisms and asked if he was Paul, he said 'yes who are you? ' He totally failed to recognise me too. We were together for 9 years and we split in in the 1980's but I never dreamt we woud be able to walk past each other in the street without recognition. Guess we both got over the split ok then.... :-).
The ex and I got to speak several times, and we said bye at the end of the day, but never exchanged addresses or anything... It never occurred to either of us.
What I am trying to say, is, its rotten at the time, but you really do move on.
Come Friday, plaster on a big smile, don't argue about tiny bits of stuff he wants to hang on to, a year from now, when you feel well you will wonder what you ever saw in him.
hugs. G xx
Great advice Galathea
I am truly sorry to hear of your marriage breaking. it seems a terrible thing, a tradgedy cause by the ravages of Thyroid disease and the doctors that are not willing to educate themselves to save thousands of us who suffer every day. However, I believe that if it was meant to be, it will be. I dont know why I believe that, but I always have sweety. All my hopes are with you. I am just finding out now that I am starting to feel human again. I realise I have a long way to go. I am trying to salvage my ruin of a marriage, and he is just now starting to realise that my thyroid has been aggravating my bipolar, and so has he lol. Hugs xx
I hope you and your husband can work it out together. And thank you so much for your kind thoughts. xx
Thank you NuMeJude xxx
Thank you for explaining and I hope your health will improve day by day. This forum is so helpful to gain knowledge and help. All the best.
Philly
Im feeling even better today than yesterday. I cant stop crying lol. To be able to write and think again is amazing. The rest of my body is still ailing, but I know I will get there. xx
Ive bee toying with ordering Thyroid-S but I've had same fears about the gp's also taking that step to going at it alone. Im only a year into taking levo but a year is long enough when you feel so dreadful! I rang for results yest and I get the most basic reply told only tsh results available not even any ranges so I feel out of my depth!
Good luck, your life and your health.. Well done for taking control! Let us know how you get on!
D
Hi Diva. You'll know when it's time to make the change. Just trust that you know your own body well enough to make that decision xx
Hi Diva, please don't be fearful, you couldn't possibly do any worse than your GP. I don't know how much hormone you are taking but if you are in the 100 to 150 range and not feeling well, your could easily transfer to one grain or one and a half grain of Thyroid-S.
I've taken several types of thyroid hormone for 20 years and you can tell which is helping you the most. Natural hormone has more components similar to your own and that is easier on your own system.
In the meantime, do what is healthiest lifestyle wise and learn more about it. I posted videos above. Here is a short one to give you an idea of things you should learn about and your doctor probably wouldn't suggest.
youtube.com/watch?v=U15Pcov...
Thank you so much Heloise. I'm on 75mg levo, result all deemed 'normal' alas I feel far from normal. I've learnt a lot from this site, I'll have a watch of the video. Thanks again x
Actually I meant to post this video on cofactors when you are taking thyroid hormone. He has 24 videos talking about each element of thyroid use.
youtube.com/watch?v=14aoImF...
Great advice Heloise xx
I had enough problems when a private doctor, who was prescribing T3 for me, wrote and told my doctor how much better I was and suggested he continue prescribing it. My GP was so angry everything I went to see him with he refused to treat saying the remedy was in my own hands e.g. stop taking T3. I think we were the only surgery in the country where you were only allowed to see your own doctor unless an emergency, or woman's problems if you have a male doctor. In the end I had to change doctors. I was not allowed which doctor to choose as there was only one (a new one) who had some vacancies. At first he agreed to see me about everything but thyroid problems. Then he found out I was no longer with the private doctor and still taking T3 (although by then it was in the guise of NDT) he said he would no longer treat me unless I stopped taking it. I stopped, got very ill again, decided to go back on it and I was therefore chucked off his books. Subsequenly endo said I need T3 and present GP prescribes it, albeit in a much too small dose, so unbeknown to her I top it up with NDT.
I wish you good luck and good health Lilian. I know it's a struggle but we must take charge and persevere xx
Hi Christielle,
I am in the same situation as you, I have been sent a note saying my bloods need to be done, I have been on Thyroid -s now for several months and feeling far better on it than Levothyroxine.
My Doctor was not giving me enough Levo, I had to push Doc several times to get to my last level, but knew that was as far as Doc would go.
Stupidly I have changed back to Levothyroxine for a week or so to get my blood levels the same as last, not what I really wanted to do, but not wanting to get told off or struck off either.
I have been still getting my Levo prescriptions through a chemist shop, I want to stop, but as the chemist arrange to do my prescriptions every other month again I feel trapped as I have to collect them. I did manage to stop my D3 400iu low dose my Doctor was giving me by saying I no longer needed it, but the chemist gave the D3 to my husband next time he called for my Levo. Not easy trying to stop the Prescriptions.
I was pleased to see someone suggesting writing a letter to your Doctor, I think I might just do that and jump back on the NDT, slowly of course.
Good to hear I am not on my own on this one, I did wonder how others got over 'confessing NDT to their Doctors'
Have never told my doc. Its been over 4 years now. He tests t4, t3 and tsh every year and has never queried the results. He still thinks I take t3 and t4. This year, however he hasn't asked for tests, they usually happen in may. I am not going to remind him.
If you are collecting the thyroxine and have lots to spare, you could try putting it in a pond with tadpoles.... It makes them turn into frogs really fast. :-).
sciencedirect.com/science/a...
I was worried my blood FT4 results would be far lower than when on Levo and I would get hauled into the surgery. I will write a letter confessing NDT and ask if I can still have bloods done.
Interesting about the tadpoles/frogs.
Hi Coastwalker, may I ask what made you think your blood tests would cause any questions when you made the change. It's been a while since I switched from Synthroid to Armour but I don't believe anyone could tell what I was taking by looking at the blood test results. Your FT3 may or may not look that different depending on your conversion rate and your T4 might look lower. Do you think he would examine your results that closely?
It's unlike T3 which results in a very low or even negligible T4 reading.
Many thanks for that bottom line Heloise, I did not realize it was just the T3 on it's own that gives low T4 results, (I thought it was also the NDT as it has T3 in it.)
The T3 was never offered so unlikely to be done.
I just wanted to thank everyone who has posted their experiences here. It's very useful to those of us who have little knowledge of NDT and other alternatives to read about it here.
Keep learning, Eliana. Keep asking questions and you will be able to help yourself.
That's what I did. I just kept asking. I did loads of internet searching and reading books. xx
Thanks I will. I'm just really snowed under with family and other stuff at the moment.
Can I just ask how you find a doctor/endo who will advise on alternative treatments to Levothyroxine?
Eliana, I'm not in the UK, I'm in the US and the problem no matter where you are is that you need a functional medicine doctor like the one in the videos above. They are only five mins. long and if you can just take the time, you will see the investigation it takes to find out which alternative you need to apply. It could be cortisol, or a female hormone problem, or low stomach acid, or high glucose. These can all create a thyroid problem. Most doctors are not going to look at all those areas for the problem. I would probably have to find a holistic doctor in New York. But you can actually work on any of those problems yourself since you don't need prescriptions for most of them.
Thanks Heloise. I don't know why I assumed you were over here
Why not? I always assume everyone else is in the UK as well I did choose kind of an English name and yours sounds a bit Italian or Greek.
But I do like transparency so I often mention I'm in the U.S. and there are some differences in medications and pharmacies.
Hi, I've been on what I call Amour Throid which is the same as desiccated thyroid & my GP didn't like the idea at all BUT I carried on with it & it changed my life for the better & im on 75g of thyroxine as well.
Granny, Armour has been used since the 1920's very effectively. That's all there was until they started producing Levo which is totally synthetic and a prehormone at that. If you are doing better on Armour, you will probably do even better if you let go of the thyroxine and raise your dose of Armour.....if you can afford it. But use your own judgment.
Everyone's suggestions are fantastic. It feels like family here, actually, it feels better than family here lol. hugs
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