Sore muscles and joints. : I am becoming more and... - Thyroid UK

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Sore muscles and joints.

Mickeydooley profile image
31 Replies

I am becoming more and more concerned about muscle and joint pain. Any walking or even the slightest activity makes me sore. And I’m not sleeping well due to aches at night. Due to lack of activity I’m feeling very weak (and old! I’m 60 but feel a lot older!). I did a medichecks ultravit test last July and my vitamin results were all good except for vit D which was low in range. I’ve been supplementing since with the better you spray. I had been attending an endo clinic and my thyroid tests showed suppressed TSH, t3 about 62% through range and T4 about 32% through range. Any ideas or suggestions would be welcome.

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Mickeydooley
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31 Replies
Lalatoot profile image
Lalatoot

Some folks manage with Ft4 low in range when they are on combo medication; others need it higher.

If those were my results I would be looking to increase my FT4 by increasing my levo dose. My aim would be to bring FT4 over 50% through the range and to bring it into balance with the FT3. Increase your FT 4 will increase your FT3 a bit depending on how good conversion is. However your FT3 is nowhere near top of range so there is room for it to increase.

I am exactly the same as you with muscle and joint pain though mine is now much better as long as I don't do too much physical activity. I am trying to adjust my lio and levo to get a balance over half way through the ranges.

Our problem will be the suppressed TSH. It is hard to get any prescription increase when it is suppressed.

Mickeydooley profile image
Mickeydooley in reply to Lalatoot

Thanks for your reply. I had considered increasing my dose following recommendations on here and I did for a few days before I chickened out and went back to original dose. I had been experiencing shakes and didn’t know the cause and was afraid in case it was the t3. I had a saliva test done and appeared to have early phase adrenal dysfunction. I have been taking an adrenal support since and my shakes have diminished significantly. I was due to go back to see endo and didn’t want him to take me off t3 altogether. Now with the situation as it is I have no idea when I’ll have another appointment so may be the time to experiment a little. The aches and pains have increased dramatically over the past month or two.

Marz profile image
Marz in reply to Mickeydooley

Magnesium ? Do you take it ?

BadHare profile image
BadHare in reply to Marz

Also good levels of other essential micronutrients especially iron, ferritin , folate & B12.

Avoiding inflammatory foods & improving gut health works wonders. 🤗

Mickeydooley profile image
Mickeydooley in reply to BadHare

Thanks. I’ve been working on gut health and have been following an anti inflammatory diet for the most part. Unfortunately due to very difficult circumstances I was unable to keep it up for a while but am back on it again. I was gluten free for a long time but it didn’t seem to have any benefit for me. I’m mostly gluten free now. (I do have some very occasionally). My last medichecks test indicated my vitamin and mineral levels were good.

Mickeydooley profile image
Mickeydooley in reply to Marz

Yes. Have done for years under the guidance of my ND.

Marz profile image
Marz

Inflammation can cause aches and pains - which often stems from the gut. I speak only from experience - sigh !

SlowDragon profile image
SlowDragonAdministrator

For many of us on T3 plus levothyroxine we need GOOD FT4 and Ft3

How much levothyroxine were you on before T3 added?

What was Ft4 typically?

If FT4 is dropping at each test you are under treated

Mickeydooley profile image
Mickeydooley in reply to SlowDragon

I had been on 75mcg levo for about 15 years before I was referred to an endo clinic. My levo was reduced from 75 to 50mcg and I was put on 10mcg, then 20mcg t3.

In October 2019 when I was on 50mcg levo and 10mcg t3 my T4 levels were 14.9 (12-22)

and then in November when my meds had been put up to 20mcg t3 and 75mcg levo my T4 was 15.2. My TSH was suppressed then so my endo wouldn’t increase my meds even though I reported feeling cold and unwell.

SlowDragon profile image
SlowDragonAdministrator in reply to Mickeydooley

When is next test due?

You need to see if Ft4 is dropping

Ft4 is only 30% through range

For many people that's too low

Mickeydooley profile image
Mickeydooley in reply to SlowDragon

I was supposed to have an appointment in May but who knows now? I could email my endo and ask to increase. I have enough to try an increased dose for a month or two.

SlowDragon profile image
SlowDragonAdministrator in reply to Mickeydooley

Suggest you try 100mcg and 75mcg on alternate days ...

Gives 12.5mcg dose increase

Retest again after 6-8 weeks

What brand of levothyroxine do you use?

Remember all thyroid tests should be as early as possible in morning before eating or drinking any thing apart from water...last dose levothyroxine 24 hours before and last 5mcg dose T3 8-12 hours before

Mickeydooley profile image
Mickeydooley

The brand of levo changes almost each time I go to the pharmacy but I don’t take teva. (Currently MercuryPharma). I’ve been given teva t3 this time though. Not happy but given the circumstances at the moment I didn’t feel I could complain. Felt I was lucky to get anything.

Unfortunately the endo clinic only operates in the afternoon. I thought I might try an increased dose and then do a medichecks test in 6-8 weeks. Then I can do the test early.

SlowDragon profile image
SlowDragonAdministrator in reply to Mickeydooley

Agree

I would ALWAYS get full private testing before any endo consultation....remember to stop taking any supplements that contain biotin a week before too

Pity it will coincide with change in T3

Try to find helpful pharmacy in future ....small independent pharmacy may be better

Different brands are not easily interchangeable

Mickeydooley profile image
Mickeydooley in reply to SlowDragon

Not sure what you mean that it will coincide with change in t3? Unfortunately there aren’t too many pharmacies near me and the ones that are are all owned by the same individual. I’ll have to drive further away but might be worth it. I have spoken to them at the pharmacy but drugs are bought in bulk and are cheapest available at the time.

SlowDragon profile image
SlowDragonAdministrator in reply to Mickeydooley

Where I live we only have large chains ...all only give what ever brand is on the shelf and won’t order in MP levothyroxine, even though it says on my prescription MP Levo only

I drive 10 miles to tiny pharmacy attached to a GP surgery (found after years of trawling around unhelpful ones) ....pharmacist understands that thyroid patients can’t change brand of levothyroxine or T3...so always has in stock MP levothyroxine for regular customers and always gets necessary brand T3

Mickeydooley profile image
Mickeydooley in reply to SlowDragon

I’ll try another pharmacy next time. Thank you.

SlowDragon profile image
SlowDragonAdministrator in reply to Mickeydooley

Always get paper prescription and never hand it over until established exactly which brand they can get

Mickeydooley profile image
Mickeydooley in reply to SlowDragon

I’ll try that next time. My pharmacist knows my family fairly well but sometimes that can be a problem. I don’t want to be ‘making a scene’. Perhaps better to deal with someone you don’t know so well.

SlowDragon profile image
SlowDragonAdministrator in reply to Mickeydooley

Different brands are not bio equivalent....this means 20mcg MP T3 would not give exactly same results as 20mcg Morningside or 20mcg Teva

And they might vary in effectiveness in different patients.

Same applies to Levo or T3

academic.oup.com/jcem/artic...

Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).

BadHare profile image
BadHare in reply to Mickeydooley

My endo clinic is the same. I make sure to be first in the queue for when phlebotomy opens at 8.30am.

Mickeydooley profile image
Mickeydooley in reply to BadHare

Unfortunately my bloods are taken at the clinic after my appointment with the endo

BadHare profile image
BadHare in reply to Mickeydooley

Uh???

Maybe ask if you can get them done prior to your appointment then they’ll be ready for the endo on the day & you’ll know how much B/S they’re talking. .

Mickeydooley profile image
Mickeydooley in reply to BadHare

They only saw me once every six weeks and now I’m not to be seen for four months. The trial seems to be coming to an end. You get one appointment and it’s at the local hospital so there’s no flexibility. I was told that’s how they do it. Hard to argue!

SlowDragon profile image
SlowDragonAdministrator in reply to Mickeydooley

Which seems utter pointless....far more productive to arrive with latest blood test results in your hand

Mickeydooley profile image
Mickeydooley in reply to SlowDragon

Agreed! Try telling that to the endos at the local hospital! And they won’t look at my private tests either!

SlowDragon profile image
SlowDragonAdministrator in reply to Mickeydooley

So your T3 trial is being set up to fail ....saves money that way

BadHare profile image
BadHare in reply to SlowDragon

I despair! 🙇🏼‍♀️🤦🏼‍♀️🙇🏼‍♀️🤦🏼‍♀️🙇🏼‍♀️🤦🏼‍♀️🤠🤡👹

BadHare profile image
BadHare in reply to Mickeydooley

Thinking outside the box, would it be possible to go to the clinic a week early & get the blood test form so your blood draw can be done early?

Perhaps contact the department secretary to ask. It shouldn’t matter to them when it’s done but may make an enormous difference to your outcome.

If they won’t comply, complain through the hospital’s PALS which you’ll find in t’interweb.

Mickeydooley profile image
Mickeydooley in reply to BadHare

I could try but not confident about it. When I’ve had the meeting with the endo they send me for bloods and give me a slip to take to the secretary to make another appointment in 6 weeks or whatever. I know it’s cart before the horse but that’s how it operates. When I get my next appointment letter I’ll see if they’ll agree to that. Thank you.

BadHare profile image
BadHare in reply to Mickeydooley

One of the reasons endo’s treat us so badly is lack of confidence which is one of many reasons this forum is lifesaving. Please don’t let them mess you about because of their ignorance & sheer dumb****ery! It’s **** being hypo. Don’t let them make it worse!!!

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