started NDT: Hey guys, I finally got NDT from NHS... - Thyroid UK

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started NDT

ziel profile image
ziel
18 Replies

Hey guys,

I finally got NDT from NHS and I already started. Don't shout at me: I didn't follow 'safe protocol' and I've hit 1,5 grain straight away. Maybe it's just my excitement about NDT but I have horrible headache all day today (third day of taking pig) and I never had it before (lucky me). Also when I was on levothyroxine (150) my periods went crazy. Normally I had it every 28 days, 5 days of period and no problems. Since thyroid removal in December last year periods started to be irregular, between 23-34 days and very light. This month almost now flow, today is 5th day (so supposed to be last one), but it started to flow like a river, why? It's also not painful at all. Normally I'm out of order because of the pain. It's really stressing me out. Do you think it's the pig working already or I'm being silly lol? :)

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ziel profile image
ziel
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18 Replies

Woah there Nelly!!!

I did a straight swap from levo to NDT and  thought my head was going to blow off or I was having a stroke/brain tumour/other scary head stuff.

You may need that amount but as wonderful as T3 is, it's bloomin' potent!  Personally I'd cut back back by half a grain until headache goes and then work slowly up.

I don't know about your period, as mine stayed reliably and painfully on time. *sighs*

ziel profile image
ziel in reply to

How do I do this, just cut the pill in half? That's why I didn't follow the protocol lol, I really can't be bothered with cutting pills and I don't think GP will give me prescription for lower dose, it was a really big issue to get NDT at all ;) you know the score!

in reply toziel

Oh okay, I have 1 grain tablets, 1/2 grain tablets.  I'm presuming yours is just one tablet of 1.5 grains?

Look, just cut the pill in half!  Or put up with the headaches. :0)

Prim xxx

ziel profile image
ziel in reply to

I will stay on it for few more days and see what's up. Thanks for reply, at least I know I'm not the only one with this problem xx

Wannabewell profile image
Wannabewell in reply toziel

Hi, I bought a pill cutter from boots for a couple of quid... Easy to use. Good luck. 

shaws profile image
shawsAdministrator

If someone is already on levothyroxine, or any other thyroid hormones, you can switch from one to another. As you were on 150mcg of levo, 1.5 grains of NDT is fine - it's roughly equal to 150mcg levo.

It will probably take a few days for your system to settle into NDT and I hope you feel reasonably well shortly. If pulse or temp goes too high just drop slightly down. If they stay stable and you feel some symptom you can increase after 2 weeks a small increment and so on until you've no symptoms.

Jazzw profile image
Jazzw

I think your reproduction system has simply switched back on - after switching off after your thyroidectomy. If you've had a few months of lighter periods it stands to reason there needs to be a bit of a clear out (apologies to any men reading!). All hormones interact - the thyroid hormone is interacting with your levels of oestrogen, progesterone, lutenising hormone etc etc.

ziel profile image
ziel

Hi guys,

No headache for now and I feel really good, I hope it was one off - when you are not used to the headaches it can be really horrible feeling lol. 

Beverleyb profile image
Beverleyb in reply toziel

when I increased NDT I felt awful, I had to increase 1/4 grain every 2 weeks . You can buy pill cutters from any chemist, they are much better than trying to cut the pills with a knife.

ziel profile image
ziel in reply toBeverleyb

Actually I feel fantastic today, don't remember last time I felt like that. Woke up at 4.30 and didn't even yawn once since then lol, my feel and hands are WARM :O 

Beverleyb profile image
Beverleyb in reply toziel

That's great!

lucylocks profile image
lucylocks in reply toBeverleyb

Hi Beverley,

I am having the same trouble.

How long did it take you to start to feel well.

I have been taking NDT for eleven weeks now after been on 100mcg. levo. previously on 125mcg. but G.P. reduced it because of low TSH. 

This is when I decided to try NDT. I really had high hopes for it but I have only had one good week so far. I started with 1/4 grain for few days, then onto 1/2 grain for a week and gradually built up to 1 1/2 grains, after three weeks on this dose I felt really spaced out so reduced to 1 1/4 grains, then I had a good week.I increased to 1 1/2 grains and felt bad again so I am going back to 1 1/4 . 

I did not realise it would be so difficult to get dose right.

Beverleyb profile image
Beverleyb in reply tolucylocks

hi browny, I have been trying all combinations of meds for 3 years since I joined thyroid UK .

At the moment I take 2 3/4  / 3 grains of Nature Throid . I changed from Armour to Nature Throid last year and feel much better . It has taken me many months to find the right dose that suits me.  In November / December last year I was taking 2 grains, I felt all symptoms returning so I increased too much too quick , I actually took another grain , panic set in as I couldn't stand the thought of being Hypo again, I was worse than ever, very anxious , crying non stop , headaches, I realised I made a big mistake so I started increasing 1/4 grain every few  weeks, it took me 3 months to start to feel well again, it's very frustrating  ,but I got there in the end.  Hope this helps. Bev.

lucylocks profile image
lucylocks in reply toBeverleyb

Hi Bev,

Yes it does help, thank you,

the way I have been feeling as made me think is it worth it and should I go back onto levo. but I will persevere with 

1 1/4 grains for a while and see how I go.

What dose of levo. where you on before starting NDT ?

So glad you have improved, it does give me hope.

Best wishes browny.

Beverleyb profile image
Beverleyb in reply tolucylocks

Hi, browny, I was on 200mg of thyroxine, I will never go back to those,I felt like a very old lady, I could hardly walk upstairs with joint pains, I slept most of the time,no energy, no life at all. I was like that for seven years.  It was the T3 that helped, I obviously wasn't converting , of course then we have to make sure all our vitamin d ,b12, ferritin and folate are decent levels, they certainly helped me too. 

 Good luck, hope you feel the benefit soon. Bev.

lucylocks profile image
lucylocks in reply toBeverleyb

Thank you.

ziel profile image
ziel in reply tolucylocks

Hi browny,

I've hit 1,5 straight away and apart from yesteday's headache I feel amazing! Can't believe I survived all day without needing to sleep, normally I would be dead in bed at 3pm. Today I didn't rest, went to my allotment straight after work and I'm still here lol. I hope it will stay like that!

lucylocks profile image
lucylocks in reply toziel

That's great,

unfortunately I am having to increase mine slowly, wish I didn't have to.

Obviously it is different for everyone.

I hope you continue with your improvement.

Best wishes browny.

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