6 doses, 3lbs and no afternoon naps

So, today was the 6th day of self-medicating with NDT and I cannot believe how different I feel. Instead of being in bed at 6pm yesterday, I was up and pottering until 9:30 and rather than peeling my eyes open around 9am, I was the one who jumped up and took the dog out at 6:15am. At 2pm, I snuggled down for the obligatory afternoon nap, which is the only thing that keeps me awake for long enough to eat with my family at the end of their day, but today, I couldn't sleep - I didn't need to, so I got back up and hoovered the house instead. While I was at it, I got on the scales, only to discover I've lost 3lbs since last weight have consistently gained week in, week out for the last 3 years.

Of course, it could be far too soon for the NDT to be in my system, and this is all the placebo effect. If it is, then I am in love with my placebo!!! I'm living a little bit every day, even if it is just housework, and it feels good! :)

45 Replies

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  • Congratulations! Really pleased for you. I was only 4 days in when I stopped needing a sleep. Like you, if this is placebo I'll take it! :-D

  • Oh I'm so pleased it's done the same for you! I thought maybe I was losing the plot and imagining things out of desperation, but I really do feel less overwhelmed by the day ahead now. With that and my TSH going over 'normal' just before I started taking it, I feel ready to sock it to my Dr now. He was talking a re-test in 12 months yet in 6 weeks I'd jumped from 3.7-5.2 TSH which even by the NHS standards is above normal. If I'd waited and listened to him, who knows what would have happened 12 months down the line. It's nice to take back a bit of the power. Hope you continue to improve :)

  • 12 months??? Good grief, is he a sadist? I've been taking it for 6 weeks now, and was able to go into work today for the first time since just after Christmas. Have you told your gp? I still haven't!

  • Congratulations on going in to work today HarryE. Long may it continue!

  • Awwwww thanks! I was scared witless! I'm sure I've forgotten what I do!

  • :-)

  • Hey HarryE, I got my dose sorted and am feeling brilliant. Cooking, houseworking, going to London and back. Woooo!!

  • Way hay! Fabulous xx

  • The benefits of NDT versus lousy thyroxine just get better for many patients

  • It's just great to hear and gives lots of people confidence when they are not doing well on levo.

    It is amazing to feel well again.

  • Really pleased for you, I'm waiting for mine to arrive,if this is what NDT does,(or placebo) I can't wait!!

  • I hope you do well on it when it arrives.I'm still gathering info on where to source it from and would welcome a PM if you'd be willing to let me know your source.Presumably you have obtained it without a prescription?

    Good Luck with it and hope to hear how you get on.

  • Well done jigsaw cat :-)

  • Great news :)

  • well done you , im so pleased for you .....just 1 question ...who makes ' placebo' and where can I get it ????? it sounds like it could be ' the magic pill' ......that all these idiot endo's need .....!!!!.

    yes it was a tongue in check question , hope it put another smile on your face .....alan xxx

  • Alan we should patent it, we'd make a fortune! :-D

  • another possible fundraising idea for tuk -----or what ----???

  • Just what I thought ;-)

  • i do come up with weird and strange ideas at times ----btw have you had a go at the ali-can challenge yet ? its gaining a little momentum .....alan xx

  • Not yet - it's in my to do list :-D

  • don't forget the paper its on .....what fun we can have !!!!!....

  • Just a note to say that although the T4 element of the NDT might not have been fully assimilated into your system, the T3 portion of the NDT will be immediately active, so it won't be a placebo effect.

    By the way, I think you are marvelously brave, taking this without your doctor's involvement - I am taking NDT sourced without a script since the endo has added in T3 to my regime, but won't sanction me taking it with the NDT HE had previously prescribed since "there is no protocol for doing so"! So he says. He actually ordered me to go back on the Levo - as if! So I've just thought, sod it, and have adjusted all the doses of T3 to the NDT I am taking accordingly, without his knowledge. And am going to see a new endo privately. But I don't know how I'd manage the GP if I was to go totally alone on this sincet my TSH is almost non-existent, so the doctors keep on nagging about heart failure and stroke and all things nice.

    Keep us posted about your TSH levels as they go down, which they will on NDT. And I would reckon you'll need to fasten your seatbelt, with a stupid doctor like yours. Good luck and all the best.

  • Thanks, good luck with the private endo too. I say I'm ready to sock it to my GP but as the appointment tomorrow creeps nearer, I'm getting a bit nervous! I just need to keep repeating the mantra 'you refused me treatment, so I'm doing it my way, and I feel great'. What he does with that information is up to him - he'll probably try and have me sectioned lol!

  • Just out if curiosity, how much are you taking?

  • Just half a grain, as per Dr P's book. It's potent stuff!

  • Thanks.

  • can you tell me whose protocol you are using? Thanks.

  • I started on half a grain too, for a week, then did 10 days on 1 grain, then have just done 3 weeks on 1 1/2. I upped it to 1 3/4 yesterday. Still feeling good :-D

  • This gives me hope. I am still not feeling good, but I am still very low.

  • I suffer from awful depression and I understand how low one can get when you feel ill day in, day out. I'm not saying that NDT will cure my mental health problems, they are too serious and complicated to be so easily remedied, BUT for the first time in a very long time, I'm actually thinking that I might just possibly have a future, whereas I was simply existing for the sake of others before that. Hang on to that hope, and maybe see about giving T3 or NDT a whirl? Xx

  • I am on NDT, just a very small dosage, compared to you, and building each month. My doctor said I just have to be patient. I have found I am not a patient person. :) I think that feeling better is part of dealing with mental health issues. Our physical issues are tied to our mental health issues. For example: depression is a physical imbalance of chemicals in our body. As a Counselor, It is very difficult to work with patients who are in constant pain and/or fatigue. My biggest goal is just to hold them steady and give them hope that it will get better and/or how to deal with it if it doesn't. If there are other issues to work through, you are not going to get very far until you fix the physical. I thought it was pretty ironic when I got sick, because I was having to put my own advice for others to work.

  • Yes that's hard. I am really bad at taking the advice I would given to others too.

  • That's brilliant news, onwards and upwards.

    Can I have some and where did you get it? I've been on Levo for 12 months since having the right lobe taken out to remove thyroid cancer. My levo was upped and upped and I started on 10mcg of T3 about 6 weeks ago with a reduced 100mcg of Levo at the same time. I don't feel any better and I've always suspected that I need NDT.

    I look forward to hearing from you.

    TT

  • I'm the same as you marfit, I have another drs appt booked for fri week, if I get no joy I'm gonna try going solo! It's so encouraging to see how much better others are

    :-))) x

  • Forgot to say well done to jigsawcat & Harry, I hope you continue to get better & better!

    :-)x

  • Hi

    can you tell me where you got it from please and can i get it without prescription. Thanks

  • I feel the same as you. After two days I super noticed the difference. Good for you hon.!! I so get it! X x

  • Hi all. I'm new and found this discussion fascinating. I was eventually diagnosed with an under active thyroid in Oct 2005 after being treated for years with depression. my TSH was 82 and free T4 was 4. Have been on various doses of levothyroxine sine then and I'm currently taking 125mg. My last tsh was taken in March and was 1.1 which I think is too high for me but for some reason they did not record the free T4. I have had several episodes since diagnosis of severe depression but have been OK for about a year now. However over the past month I've started suffering fatigue, constipation, distorted hearing, weight gain and the dreaded aches and pains - does any body else suffer from aching toes and fingers? In the past the doc has upped my Levo to 150, and then I go a bit mental so its reduced again. I'd love to have a more constant form of medication and wondering if NDT (which I assume is natural dessicated thyroid) would be the way forward? I mentioned it to my doctor about 10 years ago and was told in no uncertain terms that it was not advisable and infact she made me feel quite stupid - although I was in my 'a bit mental' state at the time. I've been seeing a new gp over the past couple of years and plucked up the courage to raise the question again. He had never heard of dessicated thyroid but did agree to look into it and talk to the Leics pharmacy manager. He sent me the reply which says there is a lack of robut evidence supporting the clinical effectiveness of dessicated thyroid and that the RCP does not recommend the prescribing of any additional liothyronine including dessicated thyroid.and it remains unlicensed in UK and is not recommended in Leics. I'm due to discuss this with my doc and would be grateful of any advice. Many thanks

  • Hi,

    Can I suggest that you copy your post to a new question rather than post on the end of someone else's thread. It will massively increase your chances of getting relevant responses. The link :

    healthunlocked.com/thyroidu...

    Click on the yellow button to "Ask a question".

    Good luck! :)

  • Hello. Can you tell me if you were on T3 or T4 before the NDT and how your labs were. I have a lot of hypo symptoms. facial swelling/myxedema, fatigue, constipation, pain, etc but my labs are all normal. I tried T3 while my labs were normal and felt good for a couple weeks but it seems to have subsided and I am exhausted more so than ever and want to try ndt. What dose did you take?

  • Hi, NDT was the first replacement I tried. My GP offered me a low dose of thyroxine but I'd already started the NDT and felt instantly improved so decided to stick with it. I started on half a grain and increased it by a quarter grain about every 10 days. I'm now on 2 grains and feel good. Sadly my fibromyalgia has flared up badly in the last couple of days and I've barely been able to move, but the hypo symptoms have stayed away. I'm of the camp that believes Fibro is a separate condition which is not a popular view on this forum, but I know the difference between that (which made me lose my job and home) and thyroid symptoms. It's still a million times better than if I wasn't on NDT, but I'm bedridden :(

  • Hi Jigsaw. Can I ask if you had any soft tissue swelling/myxedema before the NDT and if it improved with the treatment and also if your labs were "normal" or abnormal. I too have extreme muscle pain which coincides with the onset of many of my other symptoms. As I am sure that you are aware, there is the theory that fibro is related to mitochondrial dysfunction and that the thyroid hormones do upregulate the function of the mitochondria. Dr Lowe's work focussed on this if you don't already know his work.

  • Hi, yes i have swellings along the collar bone and a sizeable nodule at the base of my throat. There has been no change with the swellings and lumps so I've got an urgent referral for a scan for next week to try and find out what that's all about. I'm following Dr Peatfield's protocol, it's been really easy to do.

  • Hi I am not familiar with Dr Peatfield's protocol. Is there a book or online resource? I am familiar with some protocols for T3 ( Paul Robinsons) and also with Mark Starr's work. I hope that the scan goes okay for you and that your pain improves soon.

  • Jigsawcat,

    I'm sorry you're so unwell and I hope the flare stops soon.

    I don't think anyone denies fibromyalgia as a condition in its own right but they often dispute the validity of a fibro diagnosis made by non-rheumatologists when hypothyroidism is undiagnosed or under medicated.

    Endo and surgeon opined/diagnosed fibro and COPD when I knew high dose Levothyroxine was causing my symptoms. I stopped Levo and symptoms cleared. I resumed Levo and symptoms returned until I added T3 which calmed the Levo side effects.

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