never loose hope upping NDT!!: bit of back story... - Thyroid UK

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never loose hope upping NDT!!

Ajva profile image
Ajva
10 Replies

bit of back story, I have been on 1 grain of NDT for 3.5 years (with added t4). Every time I upped 1/4 grain I would get hyper symptoms and it would push my t3 over range. So I had no choice but to add levo in (tirosint). T4 seems to make me feel worse and worse the higher I go in doses with extreme fatigue.

I have been working on my low iron and low cortisol recently and decided to up the NDT for the 6th time in 3 years and I am finally tolerating 1 1/4 grains (2 weeks in). Usually I have to pull myself off after a week because I feel so bad.

My main current hypo symptoms are extreme fatigue, muscle aches and weakness, hair loss, weight gain etc. I actually feel no better from the increase but not worse.

My question is do I need to wait 6 weeks after bloods to up another 1/4 grain or could I try and attempt it in a week or so? The fatigue is so excessive I am unable to work, struggling to wake up, having vivid really deep sleeps. I also have PoTs and orthostatic hypertension & ME (although I still swear the ME symptoms are my thyroid). Obviously my pots etc is really bad at the moment due to the awful fatigue my body’s struggling to stand or move.

Current doses

t4: 4 days 75mcg, 3 days 100mcg

NDT 1 1/4 grain

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Ajva profile image
Ajva
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10 Replies

Ajva, sorry you’ve seen no improvements, it’s horrible when our patience and diligence doesn’t pay off for us.

How are you supporting cortisol? What you describe it how I felt as I raised my synthetic/NDT doses without proper adrenal support.

Ajva profile image
Ajva in reply to

I have been working on all vitamins by supplementing and taking adrenal cortex (thornes) and three arrows iron

in reply toAjva

It might be that the Thorne dose isn’t enough, are you following any particular advice re. Thorne, like Peatfield or STTM or are you just taking 1 tab of 50mg in the AM?

Ajva profile image
Ajva

I am on taking the 50mcg. My cortisol is still really low so I am hoping by upping my t3 slightly it will start to pick up. I am having cortisol tested again next week so I will see where I am at. Any advice how to up cortisol would be appreciated

ZeilaJee profile image
ZeilaJee

from what I’ve seen here and my own experience, it takes quite a long time to tolerate a dose uplift of NDT. I take mine in one dose in the morning at least 1/2 hour before food with a glass of water. You may find it easier to split the extra (I take 1 grain in morning then 1/4 4 hours later. Then stick for at least 6 weeks at that level. I don’t (yet) balance it with Levo though. It may be a conversion issue from Levo but others will be able to comment about that. Don’t hurry the NDT - let it take its time.

Ajva profile image
Ajva in reply toZeilaJee

you are right, I think after attempting to dose increase 6 times and finally being successful this time round I was probably getting excited and a bit ahead of myself. The only reason I would like to increase after 3/4 weeks is due to the debilitating fatigue I have, which is causing me to spend my days house bound and laying down at every opportunity (when I haven’t got my little one to look after). The holidays have been dreadful for me with how I have felt. Thank you for your advice

Ajva profile image
Ajva in reply toZeilaJee

just to add I take NDT 1/2 grain at 9am then another at 2pm (3/4 grain) then t4 at 9pm 2 hours after food and just before bed.

I am on quite a lot of meds so I have to space out through the day

ZeilaJee profile image
ZeilaJee in reply toAjva

Yes, sorry - that was a typo: I take the second part of the NDT 12 (not 4) hours later.

ZeilaJee profile image
ZeilaJee in reply toAjva

Don't know if you've put your blood test results here but you'll get alot more advice if you have them and post.

Ajva profile image
Ajva in reply toZeilaJee

Have posted most recent ones on a previous post but will try and add to this comment. I think my t4 has been slowly decreasing over a space of 4/5 months which hopefully explains my symptoms. I feel better when my t4 is much higher more near top of range. So I think I may need quite a few increases

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