Me and NDT: I started my NDT on Saturday, just on... - Thyroid UK

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Me and NDT

HarryE profile image
76 Replies

I started my NDT on Saturday, just on Saturday, just 4 days ago! I cannot, truly cannot believe how much better I feel, it's amazing! I have started really low, just quarter of a grain first thing and another mid afternoon and I know it will need increasing, but blimey it works! :-D

I still have a bit of pain, and still feeling weak, but finally, some progress.

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HarryE profile image
HarryE
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76 Replies
beaton profile image
beaton

So pleased for you Harry. xx

Aurealis profile image
Aurealis

That's great news HarryE, good luck!

Clutter profile image
Clutter

Harry, I've been itching to know how you are doing but thought it best not to be too nosey :-D

I'm so pleased for you. Once you're optimally dosed I expect the other symptoms will also resolve.

Clarebear profile image
Clarebear

Really glad to hear you are feeling better on NDT. It took me ages to get the dose exactly right (in fact still fine-tuning), but certainly worth all of the effort :) xx

chihiro profile image
chihiro

Which pretty much confirms that you are right and the endo is an idiot that hasn't got a clue ;)

So glad it's working for you :)

Marz profile image
Marz

So pleased to read your news - thanks for sharing ..... :-)

HarryE profile image
HarryE

Oh, and the lump in my throat has gone!!

Clutter profile image
Clutter in reply to HarryE

That'll be the placebo effect, said in a disinterested endo type voice ;) >>>>> I'll get me coat & hat and leave quietly.

linnet2014 profile image
linnet2014 in reply to Clutter

Oh !!!!! I thought only the Endo I saw said the placebo thing ! Is it quite typical of them ? I thought mine was just particularly dense :)

puncturedbicycle profile image
puncturedbicycle in reply to linnet2014

No, it is a favourite of gp as well. :-)

HarryE profile image
HarryE in reply to Clutter

If a placebo works, I'll happily take the placebo!

nezzykins profile image
nezzykins in reply to Clutter

Lol- you are funny x

wightmouse profile image
wightmouse

Good news, onwards and upwards.x

Sue777 profile image
Sue777

So pleased for you. X

shambles profile image
shambles

Yes, I have been keen to hear how you have been getting on and very pleased it is working! :-)

lucylocks profile image
lucylocks

So glad it is working for you.

It gives us all hope.

fixit profile image
fixit

Hi HarryE, what great news. It must feel wonderful to start feeling improvements so soon. Obviously what your body needed.

Boatseller profile image
Boatseller

I'm intrigued, where did you get your armour?

X

HarryE profile image
HarryE in reply to Boatseller

I've bought Naturethroid, not Armour, online. Can't post websites but PM me if you like

Delainy profile image
Delainy in reply to HarryE

Did you have to buy your Naturethroid from America? Ive been searching internet to buy in UK but can't find anyone without prescription. Would really appreciate you letting me know where u bought it :-)

helbell profile image
helbell in reply to Delainy

Delainy, check out stop the thyroid madness for online suppliers

Delainy profile image
Delainy in reply to helbell

Thanks Hellbell, will have a look

helvella profile image
helvellaAdministratorThyroid UK in reply to Delainy

Nature-Throid is a prescription-only medicine according to UK law. You will not find anyone selling it in the UK. If anyone did, they could go to gaol.

Rod

Gillybean129 profile image
Gillybean129

I'm also intrigued, how did you decide to go on NDT, does your GP support you? I would love to try this I have never felt so fed up with myself!

HarryE profile image
HarryE in reply to Gillybean129

GP wouldn't treat me as TSH in range. Had a private blood test which showed sky high antibodies, so agreed to endo referral. That has been useless so I just decided to go it alone, with all the info and support from all these wonderful people. I am not prepared to sacrifice my life to these idiots who are supposed to have gone into the medical profession to help people!

Beverleyb profile image
Beverleyb

It great to read that someone has been successfully treated,( I expect after a good fight) did your gp prescribe Your NDT? good luck Bev.

HarryE profile image
HarryE in reply to Beverleyb

Nope, flying solo bev!

helbell profile image
helbell in reply to HarryE

Me too

Gillybean129 profile image
Gillybean129

HarryE Good on you! Thinking about doing the same! Can I PM you?

HarryE profile image
HarryE in reply to Gillybean129

Of course x

lucylocks profile image
lucylocks

Hi

I have sent you a PM

Hope you do not mind

Thank you

lola1956 profile image
lola1956

Really happy for you

lola1956 profile image
lola1956

I have sent pm sorry I think we all have lol

Harry - have you been diagnosed? - what was your last TSH FT4 FT3 VitD ferritin folate & B12 & did you have some success with glandular supplements first?

OK questions asked.........- well done you! feels good 'coming out' doesn't it? lol!

What do you reckon is causing your pain & weakness? have you been labelled CFS/ME like me too? (mine was low Vit D - could be anything really) J :D

HarryE profile image
HarryE in reply to

Not by a doctor, just by me! It's pretty obvious from my bloods. TSH increased from 3.3 to 4 (0.3-5) and FT4 decreased from 14.4 to 13 (9-25). Only had FT3 done privately and that was low too. TG antibodies up from 1007 to 1823. Have been off sick since early January. Have been working on vits/minerals since then, and have been taking nutri adrenal too. Had taken some nutri thyroid too, and it helped a bit but I needed something stronger.

I haven't been labeled as anything yet because I have just kept insisting it's my thyroid and refusing to discuss anything else! My private bloods showed that right back in early January and unless they come up with a convincing alternative I'm ignoring them. No one has suggested anything else viable, they just keep refusing treatment on TSH. Rather a lack of imagination, in my opinion!

And , if I didn't need thyroid hormone, it wouldn't make me feel better would it???

Ldepluzer profile image
Ldepluzer

Exactly the same happened to me and I've got to tell you 18 months later I'm still feeling good , even lost weight ! Congratulations x

Excellent news, well done!!

So happy to hear you're feeling better, Harry! I'm in the same situation as you. 'Normal' TSH /ft4, but FT3 4 (3.1-6.8) which looks on low side to me, and

High TG antibodies 541.5 (0-80) and 31.5 TPO (0-33) but have been told by 2 endo's, not a thyroid problem. Even had scan showing goitre and nodules, but this was 'not clinically significant'. No treatment necessary!

Started nature throid a few days ago. Hoping it will help with horrific pain, brain fog, fatigue,freezing body temp and constant pain in the left side of my throat/ear (the side the goitre is on) but again, this pain is 'not related to thyroid' ;)

Hi Harry I am glad for you too.

I started a week ago only with one grain and feeling awful,I have a lot of pain in my body, my head is killing me.. but I will wait until two or three months to see any changes.

I am on Erfa 30 that contains a little of T4/T3 so that´s why I think is not working yet..This morning I woke up at 5.00am so my imsomnio is coming back and my throat is burning!

I imagine all the antibodies eating my poor thyroid jejejeje :)

I will change to Nature Thiroid if erfa is not working for me, All we need is pacient..jejej

Happy day for everybody.

RoloHibbs profile image
RoloHibbs

That's great news! So pleased for you. Kx

Angel54 profile image
Angel54

Fabulous News xxx

puncturedbicycle profile image
puncturedbicycle

Congrats! xx

Wonderful news, Harry!

Taffhamster profile image
Taffhamster

So glad to hear you're on the road to recovery, Harry. x

HarryE profile image
HarryE in reply to Taffhamster

Thanks all, I have taken my temperature this morning and it is a whole degree above what it was when I was first ill!

anjh-blue profile image
anjh-blue

Please tell me how you managed to get your GP to give you a prescription …my poor daughter 17yrs is really suffering on Levo sodium 125 per day. My GP is ready to write a script only if the endo agrees, although he is NHS & private he won’t prescribe NDT. My daughter has hashi's.

HarryE profile image
HarryE in reply to anjh-blue

I didn't! I have bought it myself and haven't told my doc yet!

jezebel69 profile image
jezebel69 in reply to HarryE

Well done you!! I feel I'll be following in your footsteps soon Harry :)

HarryE profile image
HarryE in reply to jezebel69

It's going well so far x

jezebel69 profile image
jezebel69 in reply to HarryE

Had my private blood test today - first move to self healing :)

You are an inspiration!

HarryE profile image
HarryE in reply to jezebel69

Way hay! Well done xx

Booblet profile image
Booblet

Hi HarryE,

You have partly answered a question I was just about to type? I want to try NDT, but, where is the best place to purchase it from? Ollybear xxxx ***I am so very pleased that you feel better...

HarryE profile image
HarryE in reply to Booblet

I don't know if I know 'the best' but I'll certainly let you know what I know :-)

Booblet profile image
Booblet

Hi again,

Sorry, can you PM me where the best place to purchase NDT please? Ollybear...xxx

HarryE profile image
HarryE

Just a quick update! Increased to 1\2 grain morning and afternoon today. One of my neighbours called out this morning ' you must be feeling better!' - apparently he could tell just from the way I was walking down the garden path!!

mickstability profile image
mickstability in reply to HarryE

Probably the heels. Apparently some GPs reckon they can tell if you're euthyroid by the way you walk down the garden path. Keep on posting updates on your dosage increases until you either achieve both clinical and biochemical euthyroid state, or go broke, or burst (in that order). Very glad to hear you';re doing well so far :)

HarryE profile image
HarryE in reply to mickstability

Strangely my heels have been OK, and I have had plantar fascitis before so I know how painful that is, but the bottoms of my feet, the arches and the front joints have felt like I was walking on pebbles all the time, sort of bruised. Most of the pain on walking has been in my hips. I have a fair sized stash in place now ;-)

flatfeet1 profile image
flatfeet1 in reply to HarryE

Well done you,

When my friend, (who is ten years older than me) said she would go back and fetch something that we had forgotten, because she was faster than me, ! ! it spoke volumes.

Keep up the good work xx

nezzykins profile image
nezzykins

Hi harry! OMG. Youve got there! Im soooooo pleased for you! Gonna get your life back now. Xxx

waveylines profile image
waveylines

So pleased to hear the NDT is working for you :) Here's to ongoing improvement in your health and who knows you will be feeling so much better in a while to enjoy the summer ahead :) :)

HarryE profile image
HarryE in reply to waveylines

Thank you! I am starting back at work next week for a few hours, and have managed to get out for a couple of proper walks too. So hopefully on the way :-)

Aurealis profile image
Aurealis in reply to HarryE

Congratulations, so pleased it's working for you :)

HarryE profile image
HarryE in reply to Aurealis

Thanks. Now i just need to deal with the GP, the complaint to the hospital about the endo, the narcissistic sister, the Open Uni exam I have in less than 6 weeks and all the other s&%# that has built up in the interim ;-)

Aurealis profile image
Aurealis in reply to HarryE

Oh :(

I'm a big believer in to do lists to clear the head. Then start with the thing that's most pressing. You don't have to sort it all out, or catch up. Take care

HarryE profile image
HarryE in reply to Aurealis

That just is the most pressing :-(

The rest will have to wait ;-)

helbell profile image
helbell

Harry, I have self switched from Levo to NDT and feeling more normal better rather than hypo...we watch this space :)x

HarryE profile image
HarryE in reply to helbell

Good, hope it continues to help. I have just increased to 1 3/4 grains and feeling almost back to normal!

sazzyb profile image
sazzyb in reply to HarryE

Hi Harry, I'm following this thread, how's it going? I was thinking about going on T3 but NDT might be the way forward. Levo is treating only some of my symptoms.

HarryE profile image
HarryE in reply to sazzyb

I'm fine. Taking 1 1/2 grains now, I started to feel like I'd drunk too much coffee after about 2 weeks on 1 3/4. Feeling pretty much back to normal, all symptoms gone!

hippochick profile image
hippochick

That is great to hear

PoppyRose profile image
PoppyRose

Morning, so good to hear this news! Hope you don't mind me asking how you came to take NDT? Did you discuss with your doc/endo? How do you know how much to take?

I might be close to going down this route. Very scared I might gt it wrong and make a mess of my health then not have a consenting doc to sort me out! :/

Best wishes.

HarryE profile image
HarryE in reply to PoppyRose

I was refused treatment by my GP & an endo, despite being so ill that I was off work for 16 weeks. So I really had no choice but to try to treat myself. I bought NDT as it had the best feedback from other patients. I have since, just last weekend, found an endo who backs me up. There is some detailed information around on dosing & monitoring so don't be scared, it was nothing short of miraculous for me! Drop me a message if you want more info x

PoppyRose profile image
PoppyRose in reply to HarryE

Thanks for the reply HarryE. Yes I will when/if I get to that point. I am learning so much from others too on here about NDT. :)

suzannai profile image
suzannai

That is great news HarryE. Did you have normal thyroid labs?

HarryE profile image
HarryE in reply to suzannai

I don't believe in 'normal' but my results were within UK reference ranges. TSH when first tested was 3.3 and later increased to 4. Free t4 went down from 14 to 13. But I also had TgAb at 100 times over range.

suzannai profile image
suzannai

Thanks HarryE. My labs are "normal" and my antibodies are negative however I do have severe hypo symptoms including facial swelling. I would like to try NDT but am not sure if it is the way to go but have been on T3 now for one month without any changes. Can I ask you what dose of NDT you took and how long it took to make a difference in the facial swelling? Thanks.

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