Pain around hip joints at night: I was put on... - Thyroid UK

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Pain around hip joints at night

Mandoo profile image
10 Replies

I was put on Levo about 18 months ago .. was tested for auto immune disease however I don’t have one. Doctor believes the reason for my underactive thyroid is down to my pituatory gland not sending message to thyroid to release thyroxine. I’ve had blood tests just checking my levels are correct on medication however I feel like I am falling apart over last few months: I have dry patches of skin, no longer able to wear certain jewellery/watches, clothes with metal zips/ buttons because I react to them. My most concerning problem is pain around my hip/ groin area which goes down my leg too and lower back at night which is making it difficult to sleep 💤 could these symptoms be related to thyroid??

Thanks

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Mandoo profile image
Mandoo
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SlowDragon profile image
SlowDragonAdministrator

Welcome to the forum

It would be helpful if you could add your most recent blood test results and ranges for TSH, FT4 and FT3

Plus have you had vitamin D, folate, ferritin and B12 tested. These are often too low and need testing before starting any supplements to improve

Low vitamin D often causes bone and joint p

Have you had both TPO and TG antibodies tested or just TPO?

Link about antibodies and Hashimoto's

thyroiduk.org.uk/tuk/about_...

All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, take last dose 24 hours prior to test, and take next dose straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

Always take Levo on empty stomach and then nothing apart from water for at least an hour after. Many people take Levothyroxine early morning, on waking, but it may be more convenient and possibly more effective taken at bedtime.

verywell.com/should-i-take-...

Other medication at least 2 hours away, some like HRT, iron, calcium, vitamin D or magnesium at least four hours away from Levothyroxine

Many people find Levothyroxine brands are not interchangeable. Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased or at repeat prescription.

Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients

greygoose profile image
greygoose

On what does your doctor base his pituitary theory? Did you have low TSH but very low Frees? TSH is the way the pituitary tell the thyroid to make thyroid hormone - not just thyroxine. So, if the pituitary doesn't produce enough TSH, then the FT4 and FT3 will be low. But, it's very rare for a GP to recognise that problem. Usually TSH is all they test, and if that's low, they say you're fine! So, I'm curious. :)

Mandoo profile image
Mandoo in reply togreygoose

I had several blood tests and I know auto immune was ruled out as a result .. doctor said the pituatory stimulates the thyroid and in my case that appears to be the issue, it used to be a case too much thyroxine was being released and I had overactive thyroid which was mistaken for panic attacks .

I didn’t ask how she came to that conclusion.. think I might try and get more details from them.

greygoose profile image
greygoose in reply toMandoo

If you once had too much thyroxine and now don't have enough, that is unlikely to have anything to do with your pituitary, that is more like Hashi's. Just because you don't have high antibodies, doesn't mean you don't have Hashi's. I think your doctor is just making wild guesses based on something she half remembers from med school. :(

Mandoo profile image
Mandoo in reply togreygoose

Should I ask to be tested again do you think 🤔

greygoose profile image
greygoose in reply toMandoo

They probably won't do that. What you should do is get hold of your past blood test results. But, you can't rule out autoimmunity on the basis of a blood test, because not all people with autoimmune thyroiditis have high antibodies.

essdobs profile image
essdobs

Yes, I get the “horrid hips” when I’m under medicated, the only thing I can do is a hot bath with Epsom salts. Really eases pain enough to sleep! Then get another blood test (24 hours after last meds) and hopefully up your medication.

Mandoo profile image
Mandoo in reply toessdobs

Thanks I had my last blood test in March and will go get a copy of what my levels were then request another blood test.

Mandoo profile image
Mandoo

I now have a copy of my last blood test which was in March which shows TSH as 3.28 which is good but that’s all they tested .. previously to that TSH was 7.12 T4 was 11.4 and CY 12.10 nothing about T3.

They told me i don’t have auto immune as they tested for them. I am now wondering if i request another test as last was 6 months ago and I have more symptoms apart from hips my skin seems to be allergic to loads of stuff but wasn’t before and I am definitely lacking in energy. Mind you I’m in my 50th year so could be menapausal.

MiniMum97 profile image
MiniMum97 in reply toMandoo

TSH is too high, it should be less than 1 if you are hypo and T4 needs to be in upper part of the range. If your last test was March ask to be retested as you feel unwell. If your TSH still too high and T4 too low ask for a dose increase.

Just because you tested negative for hashis doesn’t mean you don’t have it as others have said. I’ve tested negative about 7 times but my endo still thinks I may have it. An ultrasound of your thyroid would tell you for definite.

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