Joint and period pain worse on Eltroxin?

[Jenny1]

Hi all,

I have been on Eltroxin 50mcg for two months now. It took almost three years to get on this. I have thyroid antibodies and my TSH was wavering back and forth. It tool my symptoms getting much worse about six months ago and my cholesterol doubling to get a trial of eltroxin. I felt an almost instant response within a couple of days it felt as though I had woken up from a coma. This sounds dramatic but it is certainly how I feel.

However it is something that makes sense I feel like I have almost back to where I was six months ago. I have a lot of arthritis-the wear and tear variety. In the last few months I had a lot of muscle pain which was eased by taking eltroxin. Now I feel my joints are much more painful. I have an ever increasing ANA which was highly positive recently but my GP said it's probably due to my thyroid. My uric acid levels are also high though I don't drink or eat meat.

I also had been having very painful heavy periods and this was also eased when I was particularly hypothyroid. Now I'm on eltroxin that pain has come back and I am extremely nauseous and have diarrhoea which are all very hormonal symptoms.

My TSH went from 5.5 to 2.35 ( top range 4.20) and my GP said I am fine now. I went to an endo three years ago. He was incredibly condescending and told me there was nothing wrong with my thyroid despite the antibodies, fluctuating TSH and a bunch of nodules in my thyroid. So my GP decided to treat me. Anyone experience this ,any advice?. Thank You.

[Jenny1]

Had a horrible day with pain ystd. Have so much trouble with pain in lower back and hips and also upper back and shoulder with numbness in left hand. I am at physio at least once a month just to keep moving. It's hard to know if this is all thyroid or something else is at play.

[Hidden in reply to Jenny1]

Hi Jenny1, sounds to me like you need an increase in dose? I am not hypo but I've read on here many times that 50mcg is a starter dose and should be increased every 6 weeks or so initially until symptoms are improved, hopefully someone will jump in with a fuller response on this. I know enough to know your GP can't really work out what's going on with the TSH alone. Have you ever had your free T4 or free T3 tested? Do you have any other medical conditions and/or test results that might be relevant?

Have a read of this page from the main Thyroid UK site, scroll down to "If you are diagnosed":

thyroiduk.org.uk/tuk/diagno...

[Jenny1 in reply to Hidden]

Hi Hampster,

Thanks for your reply. It definitely has improved things for me being on Eltroxin as I am more alert and have more stamina. I have pernicious anaemia too and have an injection every two months. I struggle a bit with iron but can raise it when on supplements. I have osteoarthritis all through my upper and lower spine and my knee is in a bad way too. I got very run down and several sinus infections this year too. I had a problem with suspected small cysts on ovary but this had stopped. Came back with a vengence when started the Eltroxin. My GP said my dose is fine as I am now in range. I asked about TSH being under 1 but that was

not appreciated. I think all I can do right now is watch and wait. I put on about two stone during all this and was told once I lose that all will be fine! .Rant over, thanks again.

[Hidden in reply to Jenny1]

Sounds like you have a lot to contend with. I really think it would help you to know what your T4 and T3 is, since they are the actual thyroid hormones. I'm hyper, but whenever I have my thyroid tests done it always includes TSH and T4. Maybe you could consider private testing? Or go and see a different Endo? Your GP saying you are fine, when you clearly aren't, isn't helping anyone, is it.

I also have B12 injections, every 2 weeks at the moment. Do you feel yours are frequent enough? I know I couldn't go 2 months. Good iron and folate levels are really important when on B12 injections. Are you a PAS member?

[Jenny1 in reply to Hidden]

My T4 ismeasured with the tests as well off hand think range is 11-17 and mine was about 14.It's funny my GP is very much into B12 and I had monthly injections until my level got to 400 and I was sustaining that after two months.They say you have to wait at least a month after the injection to get a reliable value.The last injection I had my level was 780 the next day (was over a 1000 on previous injections) and after two months was 239 (bottom of range is 160).So don't seem to be holding onto it as well as before.I'm going to see a haematologist this week so hope to ask about this.Fingers crossed there maybe some answers.All the best,J

[Hidden in reply to Jenny1]

Just bear in mind that serum B12 levels are pretty much irrelevant once you're on B12 treatment, you should really just be going on symptoms. So ideally you should be able to have your next injection just before your symptoms return. In fact, this is actually mentioned in the Patient UK guidance on B12 deficiency:

patient.co.uk/doctor/Pernic...

"It should be remembered that serum B12 is not always an accurate reflection of deficiency at a cellular level.[24] It is perhaps for this reason that some patients become symptomatic if the frequency of their injections is reduced, despite having normal serum B12 levels."

If your doctor is good about these things you should see if he will agree to them more frequently (mine did). Hopefully the haematologist will be more clued up, but I wouldn't hold my breath! Remember the other important factor that they like to ignore - if you have neuro symptoms the BNF actually allows for injections every other day until no further improvement. The only person who can decide this is - YOU. This is also in the above patient UK article:

"For patients with neurological involvement, referral to a haematologist is recommended. Initial treatment is with hydroxocobalamin 1 mg on alternate days until there is no further improvement, after which 1 mg should be given every 2 months for life.[1]"

I would argue that a lot of your current struggles are because your B12 deficiency is under-treated. I would recommend you read the PAS forum "My Story" section and you will see how common this is (you don't have to be a member to read the forum):

pernicious-anaemia-society....

Hampster x