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Thyroid - Bone, Joint & Muscle pain?

J

James Lyme

Member
Messages
17
Type of diabetes
Type 1
Treatment type
Insulin
Hi. Apologies if this has been posted elsewhere but couldn't find anything.

I've been T1 for nearly 2 years and was diagnosed with an under active thyroid at the same time. I've been on Levothyroxine for the entire time, starting with 25mcg and now on 100mcg as the last result was 5.7 (October 2013). For the last 6 months I've had terrible bone, joint and muscle pain all over and couldn't work out what it was from. All blood tests came back negative, GPs didn't know. My endo just upped my dose as said the pains are due to being undermedicated.
This last week, however, the pains have worsened to severe. The other night I couldn't move without experiencing terrible pain. It's stopped me exercising (which I used to do daily) and makes simple movements difficult.
I suspected it might be to do with the Levothyroxine as it states on the reading material that possible side effects are joint and muscle pain. When I read that I was convinced that was to blame and tried to speak with my endo. Luckily I got an appointment but he disregarded the entire thing and told me I was imagining it and to pull myself together. I told him I find it difficult to walk and he said I read too many things.
Is this something anyone is familiar with and if so, what did you do? I understand you can get T3 instead of the T4. Does anyone know if that will stop the pains? If it is something common maybe it's a better idea to see another doctor? Can anyone recommend anyone in London?

I should say my diabetes is controlled very well, last A1c 5.1%. I take 25mcg (1000 IU) Vitamin D supplement a day. My results range from 57-61. I'm told that's fine (by the same endo.)

Thanks in advance!
James
 
If your thyroid result of 5.7 is TSH you are way under-medicated. You want it around or below 1. Have you had FT3 and FT4 tested? IMO FT3 is the test that best tells us if we are on the right dose or not.
 
Thanks for your reply.
The TSH was 5.7 at the end of September when on 75mcg. It was increased to 100mcg and my next appointment to review it is the end of May. The pains only started when it was increased to 100mcg. They have grown more severe with each day. I'm not sure if it a reaction to the medication or a sign that it needs to be increased.
Free T4 was 15.8
No test for T3. I'll ask the doctor about this.
My next bloods come back on Tuesday so will know the latest TSH then. When originally being diagnosed with T1 my TSH was 11.7 and am still waiting for it to be reduced to a normal level.
That's why I'm beginning to think that seeing another doctor might be a good idea so I can finally get it under control.
 
If you are really, really lucky you will find a Dr who prescribes NDT, natural dessicated thyroid extract. You can get it on a named patient license. A lot of us feels so much better on this.

Not everybody can convert the T4 in Levo to the active hormone T3. Selenium might help with this.

I self medicate with NDT and can´t say I have any symptoms at all of hypothyroidism any more, while Levo only took the worst edge off.

Have a look at this site: http://www.stopthethyroidmadness.com/
 
I've never heard about NDT. It's definitely something I'll look into.
My doctor mentioned a possibility of changing me to T3. He said it will need to be taken a few times a day. Other than that I don't know anything about it. Do you?
 
T3 only might be very good idea indeed, particularly if you are poor converter. I never was on it myself, but I have heard several success stories. Most people feel better with T3 added or on T3 only compared to Levo only.

If you can get FT3 tested along with FT4 and TSH you will see if FT3 is low compared to FT4 and that would indicate poor conversion. When on Levo you want FT4 in the upper part of the reference range or even above and FT3 mid range or higher but not above range.

A good pill cutter may be needed as T3 tablets usually are 20 mg and you want to start slowly and multi dose.

NDT contains all the thyroid hormones so I multi-dose. For the moment only twice a day and it seems to work fine, 2 grains in the morning and 1.5 in the afternoon.

Remember that when on an adequate dose of T3 your TSH will be suppressed.

Good luck!
 
Thanks for your help. When I see the doctor on Tuesday I'll ask for another test including the FT3.
I know a side effect of the levothyroxine is muscle and joint pains but I also read that symptoms of being undermedicated are the same! So the FT3 should help.
Thanks again!
 
I had the pains in my joints, bones etc too but once i was given the correct dose of Levothyroxine the pains disappeared.
 
I've had chronic pain in my hips for ages been putting off drs for ages as mother had rhumatoid and daughter got one as well and dont want something else, then my mind has been going, memory shot, mind fog. Then other week had "epalectic" fit ambalance and everything.

Long story short got on Google, all due to low thyroxin dose so went to drs for blood test (they keep an eye on type 1's lol NOT). Not seen a Dr yet may have been receptionist for all I know, told me to take ibrobrufen for pain. That night woke up with lowest hypo ever 2.1 and control next two days was hyper to hypo all day long. Then I googled again.

Ibrobrufen makes insulin work better it would seem, so only need half as much!

Put my thyroxin up today as Drs on Monday, and this afternoon hip pain has eased off 80%.

Moral of story if your not reet do some research and go steer your Dr in the right direction, and read the packet!
 
Hi @James Lyme, If you google causes of bone, joint and muscle pain there are myriads of possible causes.
Yes, onset at when dosage of thyroxine changed suggests a temporal relationship but also I recall with my child/teenager on thyroxine that the doctor said it takes about 4 to 6 weeks for the change in dose to settle out and for a blood test to be able to show any reliable change in thyroid test results.
Anything from infections to hormonal and nutritional disturbances and more can cause such symptoms. One's age, occupation, medication, family history may all come into it.
But if your symptoms are affecting your sleep, ability to function etc that is something I would expect a doctor to take note of and look into.
As a matter of interest I have been suffering for about 6 weeks from muscle/bone and joint aches requiring paracetamol for relief. I have been holding off seeing my doctor about it because I had been advised to change a medication (not thyroxine) and began carrying things in a new backpack about then there may have been temporal relationships involved. Once I have completed 4 weeks back on the original dose of said medication I will review things. Although from what I have read, headaches and any vision disturbances can be things that require urgent attention.
 
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