I've been prescribed NDT! !

[electrica77]

I am totally stunned.

A little about my story: I had to change my GP last year as I didn't feel he was supportive (although he did order lots of tests) of the problems I was having and he intimated that I needed counselling, and even referred to Munchausen's Syndrome in one conversation (!) When I saw the Endo registrar he totally dismissed the idea of T3 or Armour, and pretty much put me back to square one. When I changed GP I went to the local University practice (Reading Uni) as the head doctor there is also head of teh PCT trust (or whatever the Tories have done there). By PURE CHANCE I started talking to a nurse who did my blood test, and she told me that a particular doctor there specialised in thyroid, so I went to see him next. He was very sympathetic, and when I asked about NDT, he said he couldn't prescribe it as he didn't know about it, but he knew another of his patients was under the Head Endo at Reading Royal Berks Hospital (our local), and that he had agreed to put someone on a T3 trial, and if that failed, Armour. He referred me and wrote a letter explaining I was to see that particular Endo, I had to rearrange a few times, but saw him today, all prepared to argue my case as I've been doing with every GP etc.

He took me into his room, asked me what dose of levo I was on, and I explianed that my blood results were now balanced but I still had various symptoms and I didnt think T4 alone was working, and that I'd heard that NDT could work better for some, and I said something like 'every other country in the West has it'. He said 'Well I'm happy to prescribe it, I do about 3 or 4 of these prescriptions a month, but.....'

I can't really tell you exactly what he said next (something about over-replacement and hearts and bones blah blah) as I was so stunned that I'd only been there 2 minutes and hadn't even had to argue or explain or anything!!! In fact I was so shocked I immediately backtracked and said 'I'm happy to do a T3 trial first'. He didn't even really acknowledge that. I asked him some more questions about diet and stuff and within ten minutes I was walking away with an interim script for levo and him writing to the hospital pharmacist to buy me some pig glands!! They think I should have it within a couple of weeks!

I actually nearly cried as I walked out, as the last couple of years have been so difficult at times. I really hope Armour works for me, I know it isn't a magic bullet, but so many people seem happier on it. I feel very very lucky.

Anyway- onto the questions part of the post!

1) Is there a list on here anywhere of endo's and GP's who are sympathetic to NDT and T3? If so, I'd like to add my GP and the endo, as they would be very good for anyone in Berkshire I think. I would say the Endo was rather dismissive of some of my symptoms and he didnt really discuss pros and cons, or success rates etc, but to be fair I didn't push him to either.

2) The doctor said that I can drop levo one day and start on the full dose of Armour the next. This does worry me a little- he says he has an equivalency table, so he will look up my 150mcg levo and work out the equivalent NDT. (I'm assuming it's Armour but it may not be I guess). Is this usual? Would I be better to build up over a month or something? He hasn't asked me to come back for a blood test. He said to have one at the GP 6 weeks after starting.

3) what have other people's experiences been of taking it? Do I need to watch out for any symptoms or downsides?

4) What's the best way to take it? I take levo in the morning an hour before food and the endo advised me to carry on with that. I said I'd heard that some people spread their dose and he said I could split it in two if I wanted?

Any/all advice gratefully received, and also- thank you so much to everyone involved in this forum for showing me there was an alternative, and then giving me the information to pursue it. If anyone wants the details of my GP/endo please feel free to message me.

So happy!

[Hidden]

Ho thats brilliant good for you.

Its so refeshing to hear a nice story - cos lets face it , weve all been to hell on this one. Good for you Im so pleased for you.

I use to take my armour 3 times a day 6am 11am and 3pm. It worked for me. No tea or coffee an hour before or after (I did not risk it- but others may do) and swallow it whole- dont chew it. I did not find it AS effective when chewed- again others may do otherwise.

Enjoy the benefits xx

[Clarebear]

Hi - great news

I think you could send Lyn or Louise a PM with the details of your doctor and endo - then they can add them to their list of sympathetic doctors.

Personally I would not start on the full dose of Armour as you may need to build up slowly to get your system used to the direct T3. Also when you first start on Armour you will have alot of synthetic T4 in your body plus all of T4 and T3 in the Armour - I think you could end up feeling over dosed.

I have writtten a series of blogs about my experiences with starting Armour if you are interested:

thyroiduk.healthunlocked.co...

I take my Armour in 4 doses - 1 grain at 5am, 1/2 a grain at 11am, 1/2 a grain at 3.30pm and 1/4 of a grain at bedtime. I think it is a matter of experimenting to see what works best for you.

I don't worry about eating and drinking with Armour but I do take my iron well away from it.

Good luck and look forward to hearing how you get on xx

[Hidden]

Wow! all I can say is you hit the jackpot - so glad for you!

I hope it works for you, it should (well it used to for folks for over 100 years) please make sure any other underlying/associated vitamins and minerals are at good levels too (the usual fab 5 - irons, folate, ferritin, b12, Vit D)

actually I'm quite jealous! (please ignore me, it's a non-treated hypoT thing, even if I was treated I would prefer the natural route).

best wishes Jane

[nobodysdriving]

I am really really happy for you xx

[electrica77]

Thank you! apparently all my vits are great (haven't had vit D done but my GP said basically everyone in the northern hemisphere is lacking there, especially at this time of year). In fact my B12 was a little over range.

I will email one of the people suggested above with my doctors' details. I think it's only fair after the support I've had from the site, and I'd like others to get the same help from the NHS if they need it.

Clarebear, thanks, i will def read your experiences, and I agree about starting slowly. I was a bit surprised he wanted me to whack straight up to the full dose, as my understanding is that T3 can be a bit of a shock to the system at first (oh god I hope it helps me lose weight and gives me some energy back!). I might come off Levo and try a half dose for a few days and build from there.

[electrica77]

Actually does anyone have a link to Lyn or Louise or can you tell me how to find them on here? I'm not on here regularly so I'm not sure..

[RedApple Administrator in reply to electrica77]

You can contact them via the main website contact form here

thyroiduk.org.uk/tuk/forms/...

[RedApple Administrator in reply to RedApple]

P.S. Great news, and all the best for your new journey to recovery!

[Hidden]

Hi I've just started armour I take 1/4 grain approx 6.30am and 1/4 at 3pm and will do this for a week. All the best x

[DeniseR]

Wow, so so pleased for you! It's great to hear a positive story and that someone may now be on the way back to a normal life

[hymermad]

Yes it is great to hear a success story in as much that you have been prescribed NDT. Excellent news, Hope all goes well.

[PinkNinja]

Great news

As others have suggested, you may need to build up slowly. The equivalent NDT, according to Armour's conversion chart, is approximately 1.5 grains. You may be someone who needs to start on 1/2 grain or you may be fine with the full 1.5 grains.

I took 1/4 grain twice a day the first day and felt nothing, so no adverse effects from the shock of some actual active T3. The next day I took 1/2 grain twice a day. After about six days I had lost a lot of the nasty symptoms but was feeling more tired so upped it to 1/2 grain 3 times a day. According to Armour, this should be the dose I will need but I have had to keep increasing. I increased by 1/2 grain a day every 2 weeks until I hit 2.5 grains and then waited 4 weeks to go to 3 grains and then another nearly 4 weeks to go to 3.5 grains. I am now on 3.5 grains and feeling a lot better. I have only just started on this dose so I don't know if I am there yet. This is just my experience though. You need to go by how you feel and what your doctor says.

Some people will notice symptoms of taking T3 on a very small dose, which is why it can be a good idea to have a "test day" or two with a tiny dose like 1/4 grain twice a day.

Bear in mind that the conversion charts can be wildly inaccurate for some people and you may well need more than the chart says to feel well. Your endo seems pretty good though so I'm sure he will keep an eye on things.

Let us know how you get on

Carolyn x