need some words of encouragement please - Thyroid UK

Thyroid UK

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need some words of encouragement please

Beau55 profile image
12 Replies

Hi everyone,

it’s been a while since I last made a post. I started armour last September after being on a high dose of thyrogold for years and I’m still trying to find my dose on armour.

I have gradually worked up to 3 grains which has been a rocky and rather arduous task (low iron and low cortisol) and I’m on 600mg of adrenal cortex. I run through the usual cycle, I raise and feel weird for a few weeks, then around two weeks of feeling somewhat better and then crash again. I know this is normal for NDT and I know my usual signs and symptoms. I also monitor with temperature and HR and have been raising by a 1/4 due to my sensitivity.

I ended up doing my last lot of bloods with my Endo only two weeks after raising to 3 grains (long story) and very much less than ideal. I had been on this dose for 6 weeks with some success and then raised to 3.25 just before my appointment. My Endo saw my bloods which are spot on and told me to drop my raise which I reluctantly did. It’s been a week back on 3 grains and I feel terrible with anxiety, fatigue, very low and tearful, resting heart rate down to 56 and my temperature has dropped into the 35’s for some of the day.

My Endo wants me to hold this dose for 12 weeks as it’ll take time for my cortisol to improve. I just feel at a complete loss. I thought as I got higher with dosage, this ‘resting’ period would be better than square one symptom wise. I just have a feeling that I’m still not on the right dose yet and just wanted to know if anyone had a similiar experience even as they got closer to their dose. I know I’m not going to feel well properly for a long time but I’m quite disheartened by seemingly going backwards.

My current bloods -

TSH - 0.01

T4 - 16.8 (12-22)

T3 - 6.8 (3.2-6.8)

I know they look very great and I think that’s why I feel so upset that I’m worse than ever.

Currently also tackling my iron (much better on three arrows) , my b supplements are all optimal with supplementing /injections. I was previously on quite a hefty dose of thyrogold (600mg) which equals around 5 grains of armour looking at conversion charts.

Any nuggets of wisdom of fellow NDT’ers would be amazing 😌

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Beau55
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12 Replies
seveneleven profile image
seveneleven

No experience to share I'm afraid but watching with interest, as cortisol is also in the toilet, and seems it can be a really rough ride. Sorry you're having such a hard time with it and hope some words of wisdom coming your way! x

Beau55 profile image
Beau55 in reply toseveneleven

thank you, I really don’t want to paint it in a bad way as I’ve had some really good patches but I just wish they would stay and build! X

SlowDragon profile image
SlowDragonAdministrator

What are your most recent vitamin D, folate, ferritin and B12 results

What vitamin supplements are you taking

Perhaps consider testing Cortisol and DHEA

Though taking adrenal supplements likely to skew results

regeneruslabs.com/products/...

portal-app.inspira-regeneru...

Beau55 profile image
Beau55 in reply toSlowDragon

thanks slow dragon, my b12, vit d, folate are all optimal now it’s just my ferritin which I’m still trying to increase (69) but on three arrows nutra. My cortisol has been abismal for years on nhs and saliva adrenal tests, most recent still awful. My concern is that I’m already on 600mg adrenavive and still doesn’t seem enough

Imaaan profile image
Imaaan

Sending you heartfelt positive vibes . Maybe a little T4 6.25-12.5 mcg could be helpful???

Beau55 profile image
Beau55 in reply toImaaan

Thank you Imaan, that is a helpful suggestion! Do you think it’s too soon to go In with topping up Levo before checking I don’t need a small increase in NDT? I am redoing bloods tomorrow as it will be nearly 8 weeks from my last test so I can see if they have dropped

Imaaan profile image
Imaaan in reply toBeau55

I think it would be best to make any changes after taking the test and seeing your results. The reason I suggested a slight t4 increase is that I find having my free t4 around 70% to be helpful for myself and thought you might possibly benefit from it as well????

Taking more ndt would probably push your free t3 levels above range and that could possibly be too much for your adrenals and whole system.

Also, how are you taking your meds? I've found splitting them up 4 or 5 times a day helpful for me. Ive tried taking it 3 times and I'm fine but my adrenals prefer it when its 5 doses.

My Routine :

530am 45mg

12pm 45mg

3pm 30mg

5pm 15mg

10pm 15mg

***I've stopped taking my T4 about 3 weeks ago to see my baseline on NDT alone.

Delilahmy profile image
Delilahmy

Hello Beau … gentle hugs … stick like glue to this site …I’ve found it to be a bit of a holy grail… I’m 63 and a Nurse and still gain from being here…

Look at your levels and Slow Dragon suggested and consider possibility of b12 deficiency … even levels within range we may still be symptomatic and benefit from supplementing. Look at b12 pernicious anaemia site here and see if you connect in any way with symptoms

Good luck x

Beau55 profile image
Beau55 in reply toDelilahmy

thank you for your helpful suggestion but I’m already on b12 injections and I have had them for 6 years now so pointless even testing 😣 I assume it’ll be in the thousands but I also take metabolics b vitamin complex to hit my other b’s x

Gustie88 profile image
Gustie88

I agree with SlowDragon. It’s likely your adrenals. Check cortisol and DHEA. May also need to supplement Pregnenolone.

Beau55 profile image
Beau55 in reply toGustie88

yes my adrenals are useless, I’m already on 600mg of adrenal cortex. My recent saliva cortisol is still too low but I’m hesitant to increase the cortex any higher and wondering if I’ll need HC to combat it

Gustie88 profile image
Gustie88 in reply toBeau55

Taking more and more thyroid is usually fruitless unless the adrenals can support it. You probably need actual HC or methylprednisolone instead of a cortex supplement. Also will need some DHEA and pregnenolone as these are important hormones made by the adrenals. Have them tested asap if possible. Wishing you good health.

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