Why is my body reacting like this? Levo & NDT. ... - Thyroid UK

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Why is my body reacting like this? Levo & NDT. Please help

theriverman profile image
14 Replies

I'm not sure if I'm super sensitive to different thyroid medications, but while I have had short tastes of the "sweet spot", I can never seem to get it leveled off there, and my body has weird reactions for the last 3 months.

-Aug 28: diagnosed with hypo, tsh 36

-First three weeks on generic Levo 75: feel even worse, new symptoms, pain in hips

-Switch to Synthroid 100, one week later: feel like myself again, symptoms all improved, lasts for 4 days, up and down with two other good stretches that last 7 and ten days

-Switch to Unithroid 100: within a few days feel awful, weak, hip pain returns

-Switch back to Synthroid 100 on 10 days later: still can't seem to feel right for the next 10 days or so

-Try NDT 1 grain (two half tablets): first day I feel amazing, then wake up really sore the next day and hip pain returns, add .25 tablet in afternoon and hip pain gets significantly worse, sciatica/herniated disc pain in left leg returns over night

That's where I am now. I feel "ok" today but pain in leg from herniated disc got reaggravated somehow.

Very confused on why my body seems to be so sensitive. I've had a taste of a healthy life again, but i can't figure out how to sustain it.

Many of my symptoms are muscle related, wondering if adrenals may play a role.

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theriverman
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14 Replies
HughH profile image
HughH

When you take thyroid hormones it will initially increase the levels in the blood and this could explain why you feel better. The body's control mechanism will however detect these higher levels, reducing the amount of TSH made by the pituitary gland and this will mean that your thyroid makes less thyroid hormones. The result can be that you feel no better and may even feel worse. It is a bit like a thermostat being stuck at too low a level.

This is why many people taking thyroid levels need to take larger amounts, resulting in TSH near zero. Your problem is not with the brand, you need to stick with a treatment, gradually increasing the amount to see if it will work. Many people do well with thyroxine (T4) and it is only if you get to a high dose which is not working that you need to consider NDT or T3.

I think that you are switching to often your body needs more time to sort things out.

You are not helping altering your medication too often and too quickly.

I have been on the same 2.5 grains of NDT for 10 weeks now I know that this new batch is not quite right but I have waited until Monday to have my blood tested.

I had many aching joints when I starting on thyroid medication but they have gradually faded away. Some days if I do a long workout my ankle joint starts up again, mainly because my T3 is dwindling.

alwaysceptical profile image
alwaysceptical

You should also check your parathyroid hormone levels. Calcium levels in the low 10's are often not normal and a sign for hyperparathyroidism. They are supposed to get lower as we age. In such a case supplementing with vitamin d can make things worse. Please take alook at parathyroid.com/diagnosis.htm

theriverman profile image
theriverman in reply toalwaysceptical

I had my pth checked and it was right in the middle of normal range.. any other reason my calcium might be high?

alwaysceptical profile image
alwaysceptical in reply totheriverman

High calcium can be a sign of hyperparathyroidism even with a normal level of parathyroid hormone. Keep a close eye on your calcium level . Read carefully the link I send you. For your age is normal high.

theriverman profile image
theriverman in reply toalwaysceptical

thanks, i'm reading it.. my pth is 32 (14-64), I guess it's in the lower half of the range

wagnermia profile image
wagnermia

I’m familiar w hyperparathyroidism, having had it and glands removed to correct. Calcium levels will fluctuate within the normal range as part of the feedback loop w PTH. Yours was in the middle w Calcium at top range. On the surface all seems to be in good working order. However, PTH high along w your calcium higher range could merit further investigation to include your Vit D level. If your calcium ever goes ABOVE range, this is when to take a more serious look. In adults Calcium should never go beyond range. Anyhow, all that to say all seems ok w you. This link provides more usual info if ever needed... parathyroid.com

theriverman profile image
theriverman in reply towagnermia

my pth is 32 (14-64), you think that's cause for concern? i'm going to download the calcium pro app and check that too

wagnermia profile image
wagnermia in reply totheriverman

I would say no; however, everyone is different. If your PTH was say in 55 or above, I’d take another blood test to include Vit D. I found that the Calcium level is pretty specific. Since my corrective surgery, I had Calcium exactly as yours... right at the very top. This made me nervous but next lab set showed it back in the 9’s. Try not to stress about it. Download the Calcium pro, read up, research... but I’m feeling that you are A-ok 😊

theriverman profile image
theriverman in reply towagnermia

calcium pro app said i was very unlikely, but i only entered blood calcium, vitamin d (44), and pth

wagnermia profile image
wagnermia in reply totheriverman

I’d take that - One less thing to sort out 😉

Avidreader profile image
Avidreader

I recently attended a talk by DR Anthony Toft ( which was arranged by The Thyroid Trust - I live streamed the talk on my Twitter account & it’s just being edited to go on their website - hugely interesting-

I also wax & wane ( 24 years awful in Levothyroxine) now 1 year on NDT ( Nature Throid ) - 3 grains a day - initially fab ! Then shoulders , upper arms pain , swelling , bruises , inflammation ( but I’ve just had 1 whole week feeling amazing again !) so while I was thinking to change to WP - I now think I should stay on Nature Throid ! But I m concerned about my arms - having bloods with GP who since she saw my Medichecks bloods - is repeating them all - ( 6 weeks later ) a result ! I’m loathe to keep chopping & changing as I think my body need to adjust maybe after 24 years on just T4 ?

mischa profile image
mischa

Just looking at your results and your ferritin could be higher - yours is not even halfway through the range. Iron and cortisol needs to be good for thyroid meds.

mischa profile image
mischa

As your ferritin is low, it would help you if you have an iron panel blood test done. This will show you where your actual iron levels are.

I looked at your cortisol saliva test and your first sample should be at the top of the range - yours is just over halfway through. Your second sample should be 75% of the range - yours is way too low. Your third and fourth samples should be at the bottom of the range.

Cortisol follows a natural circadian pattern. Cortisol should be at the top of the range in the morning and then gradually flow downwards throughout the day finally reaching the bottom of the range at night. This allows you to sleep.

Your pattern isn't dire - but it's complicated as you need to increase the first two samples and decrease the 3rd and 4th samples - it needs some support in the morning. You could try an adrenal cortex in the morning. But you need to watch your evening cortisol doesn't go any higher.

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