advice on starting NDT - what’s normal?

[PaleoGirl]

Hi, I would appreciate advice on starting NDT and knowing what is normal in the first few weeks.

i have been prescribed a starting dose of 1/2 grain twice per day - one waking and second dose around 2-3pm increasing by 1/2 grain as I feel able and well. Aiming to get to 1 1/2 grains per day.

I am usually sensitive to medicines so have started with 1/4 grain twice per day, currently on day 10 at this dose.

For the last two days I have felt a little edgy and I am aware of my heartbeat (can hear it off and on in my left ear). Fullness sensation in ears, pressure feeling in face?

Temperature has stayed a bit erratic - ranging from 35.6-36.6. I always have low blood pressure, around 90/60 mostly. Heart rate usually 65-75 but has been slightly elevated in the last two days.

I have read that when getting some T3 you can feel a bit hyper before the body accepts and settles but do I try and increase my dose with these symptoms going on or stay at this dose. My patient notes do say expect some side effects upon starting and with each increase due to an increase in cortisol. I am not due to have a follow-up until bloods are done at the 6 week point. I am a patient of The Thyroid Clinic (Dr Georgina Conway).

I am petite - 5’1” and not carrying any extra weight (I don’t have scales so don’t know exact weight) - in case relevant for dosage.

Many thanks in advance for any advice

[Insomania]

Have you switched from levo to NDT?

I started NDT from zero, no levo, on 1/4grain per day, increasing slowly by 1/4grain every 6-12 weeks following blood tests and review of symptoms. There’s definitely a pattern to each increase. I call it an initial ‘uplift’ which continues for weeks, sometimes gets a bit buzzy then settles, I can feel it tail off and i know I’m ready for an increase.

I also played around with dose timing and seem to get on better taking full dose early morning, get up an hour later.

I’m up to 1.5grains in 13 months. I’m also 5’1” and I weigh 8st 3.

My T3 got up to 70% of range in May but I’ve had a drop which I think is ferritin related. I have iron deficiency anaemia and get iron infusions when needed so I’m waiting for that appt. Another uplift I’m looking forward to!

[Framboise]

Hi PaleoGirl, I'm tagging three other posters here because they are with the same doctor and were all started on higher than usual doses of NDT Jamima Jojozo moljanie I think you probably need to discuss things with each other using the Chat facility, and then decide what's best for you to do.

I started Armour after taking 125mcg T4 and 40mcg T3 for a while. I took 1/2 grain of Armour daily for a few weeks, then increased to 3/4 grain for a further few weeks, then 1 grain and continued increasing like that. It took about 3 months I think to get to 1 grain. My doctor at the time was Dr Gordon Skinner who was extremely knowledgeable about thyroid problems and how to treat them.

Were you taking any thyroid hormones prior to starting Armour? If you weren't then even 1/4 grain twice a day may be too much. I remember feeling a sense of calm and wellbeing when I took T3, I needed it badly and T4 on its own had caused me other problems. I also remember that in the week prior to increasing my dose I'd get sudden waves of warmth in my body, not exactly hot flushes, much gentler, but I decided they were the same principle and meant my body was asking for more NDT. They would stop as soon as I increased the dose. Some people though can feel jittery and just not get on with T3 at all. If I were you I'd probably go down to just 1/4 grain a day for a week or so and see if I felt better or worse, then take it from there. Good luck!

[pennyannie]

IvyBoo

[debjs]

I agree with Framboise. I too used to see Gordon Skinner & started on ¼ grain of Armour, increasing by ¼ grain every 2 weeks. Sometimes that was too much though & I had to wait 4-6 weeks before another increase. I found I always had nausea, headache & felt a bit jittery from days 3-7 after an increase but then settled. It took a long time to reach & find the right dose for me but was complicated by unstable calcium levels. I found following Paul Robinsons T3 protocol worked for me.

[Jamima]

Hi PaleoGirl - I was also a patient your doc, she started me on 2 grains of armour, no titration from previously using 50 levo and 6 T3. Needless to say, it didn't end well and about 3 weeks in, I had to stop taking it as I felt possibly the worst I've ever felt on thyroid hormone. I found it difficult to get a reply from the clinic as to how I should proceed so I dropped it down to 1 grain per day but couldn't tolerate that either. By the time I managed to speak to the doc (around 7 weeks in) I'd dropped to 1/4 grain per day, my T4 and tsh were supressed and I felt bloody awful. I'd take the advice you've been given here and start on 1/4 grain and titrate up, some can go up weekly/fortnightly, some take longer, but I wouldn't want anyone to feel like I did. Jojozo moljanie

[PaleoGirl in reply to Jamima]

Thanks for your reply. I take it you did not stay with the clinic? Did you find a better doctor to work with. I am only 10 days in to taking any thyroid hormone so finding a good doctor would give me a bit more confidence starting out. I am dropping down to 1/4 grain from today though.

[Jamima in reply to PaleoGirl]

Hi PaleoGirl - I didn't stay with the clinic primarily because when I did eventually have the chance to speak to someone, in this case the doc, there were no answers forthcoming as to why that dosage without titration would make me feel the worst I've ever felt, no suggestions on how to remedy it, just the offering of levo/t3 or t3 only and which would I like to choose? I'm not paying a thyroid specialist with no answers to make decisions for myself when I can do that for free. You may have an entirely different experience, but just be aware that even in these very early stages, you're consulting a forum for guidance whilst simultaneously paying her for guidance and the overwhelming advice is to change from the guidance she has given you. Food for thought. I'm now self medicating.

[LushPrune in reply to Jamima]

Hi, I also used this doctor and was started on 1 grain a day increasing to 1 and a half over days to weeks. I also felt that I was given the choice of levo or Armour with not much info except the difference in price. She asked me what I wanted to do and when I pressed for more info she just said Armour was preferable if I could afford it but no more explanation than that. If there is a separate chat about this doctor I would love to be part of it as I am wondering if I should just trust her recommendation or get another opinion before taking expensive medication for life.

[Jamima in reply to LushPrune]

Hi LushPrune - do you feel unwell on this dose?

[Maldeerum]

My starting dose was 1/2 twice a day (from 75mcg levo) and I felt dreadful on it initially. Panicky, edgy, rushing heart, hot and stressed out. I wish I had started lower and increased more slowly. It was unpleasant. I was also under the care of a private thyroid doctor.

NDT is definitely right for me, but any increases in dose I do very gradually now.

Don’t be afraid to go slowly, especially if you know you are sensitive. All the best.

[Gillybean1]

Hello PaleoGirl,

Please go slow. 1/4 grain once a day for 6 weeks with optimal vits/mins checked too, retest FT3/ FT4/TSH. I did it too fast when I started , increasing every 2 weeks and paid for it later.

I understand it takes about 6 weeks for the T3 side of NDT to bed in to our cells and for us to get used to it so to speak, and the T4 the same.

I have found benefit in splitting the does 2 then 3 times a day as the dose has increased (now 1 1/2 grain per day) and that takes months working out what works best for an individual and which spacing of times taken suits the best for you.

You are being asked to run before you can walk. Go slow, its much gentler and easier to monitor how you feel consistantly.

Every best wish, G

[PaleoGirl in reply to Gillybean1]

Thanks so much for the advice. What does it mean - you paid for it later?

I am a complete novice so trying to understand how to pace myself, what should feel normal and what can go wrong etc

I only took 1/4 grain today and will stay with that for the next 6 weeks.

[Gillybean1 in reply to PaleoGirl]

By that I meant I missed my sweet spot, got weird symptoms, confusing test results, felt dreadful, and had to start right back at the beginning on 11/4 grain.

I would say that I am extremely sensitive to T3 and realised later. I monitored temperature, pulse, blood pressure , sitting and standing, before the meds, 4 hrs after the meds and 8 hrs after meds approx once a week. I wanted to see what changed, when my peak absorption was....it has been useful, and basically how I felt.

This also can help a bit with GP and Endo if your lucky, so they could see this data, to show my BP wasnt elevated, my body was still freezing cold (low temp) even though TSH was/is suppressed.

Every best wish, G

[FoggyThinker]

I also was advised to increase NDT quite quickly to start with, having taken no thyroid treatment before; in the same position again I would go much more slowly, to let everything settle and avoid increase the sweet spot which is different for everyone. Best of luck

[PaleoGirl]

Now I am wondering whether I made a mistake choosing Armour over Levo as first time starting any replacement.

Should everyone start with T4 and see how they fair?

I reduced the Armour to 1/4 grain but have stopped altogether as I feel my body needs to stop and reset and then try again. The heart pumping in my ears and irritable feeling did not ease when dropping back to 1/4 grain. I have stopped altogether today as the pulsatile tinnitus is overwhelming at times.

[posthinking01]

I want to PM you re Dr J T how do I do this I can’t see anything when I press on your profile that allows me to do that !

[helvella Administrator in reply to posthinking01]

Top right (when viewed on a large window like a PC) or middle (when viewed on a narrow window like a phone) look for [ Chat ] - see attached image.

Screenshot showing chat button

[posthinking01 in reply to helvella]

Brilliant thanks for your help !