Endocrine Myopathies

[HMBradley53]

I have been having horrible muscle pain I can't even exercise any more. I went to the rhumetologist and she ran every test possible. MY CK levels were elevated and my TSH made it slightly over the range it had always been in range before. I stopped exercising and I finally was feeling better so I decided to exercise again. So Tuesday and Wednesday I did 20 minutes nothing too hard and I had no strength it was terrible now the pain is starting again. Does anyone here have Endocrin Myopathies ???? If so what kind of treatment did you receive and did it help with the muscle pain. I ride a motorcycle and I don't want to sell it but if this keeps up I may have to.

TSH 3.780 ( 0.358 - 3.740 ) Fasting and stopped B-Complex for about 5 days

Thank you

[SlowDragon Administrator]

You need to continue to improve your low vitamins, then TSH should rise enough so that the blindest of doctors can see you need starting on Levothyroxine

Have you tried cutting gluten out too?

One of your previous posts you say you're lactose intolerant, which is almost as common as gluten intolerance with Hashimoto's

Exercise depletes FT3, it takes two or three days for level to recover

Think of a tap trickling water in a basin. Trying to get enough to wash with. Everytime you exercise, its like the plug coming out the basin.....the water disappears. Putting the plug back in, doesn't give enough water immediately to be useful, you need to wait for dripping tap to slowly fill the basin up.

[HMBradley53 in reply to SlowDragon]

I've cut most gluten out...If I have any it's very little..I hate that I can't exercise !!!

I'm taking vitamins and Iron and I'm almost done with my Vitamin D prescription and I think I had a week where I felt kind of good and it's gone now. I had no idea that if your vitamins levels were good your TSH would rise. I'm going to have my Rhumetologist run everything again next week,TSH FT3 and FT4. I had emailed my endo and told her everything she looked at my email and never responded. I'm hoping my Rhumy will help me or my PCP when I have my physical. I don't want to deal with that uncaring Endo any more, 2 weeks ago I found a lump in my breast and Tuesday I go for a mammogram and ultrasound things are just getting worse..Thank you for all your info

[SlowDragon Administrator in reply to HMBradley53]

You will likely need an ongoing maintenance dose of vitamin D, or levels will drop again

Gluten free diet needs to be strictly gluten free or it's not really worth bothering

chriskresser.com/the-gluten...

amymyersmd.com/2017/02/3-im...

[HMBradley53 in reply to SlowDragon]

Thank you so much for the info....I will have to go gluten free if I want too feel better I can't stand the pain any more

[SlowDragon Administrator in reply to HMBradley53]

Trying it for 3-6 months should be long enough to see if it helps.

If it does, stick on it.

If no obvious improvements reintroduce gluten and see if symptoms get worse

[HMBradley53 in reply to SlowDragon]

Great idea, I have been looking for recipes

[bmcentire]

I have really bad leg pain from thyroid. It feels like the muscles in my legs. My pain Dr. told me it might be nerve pain. I definitely know its the thyroid causing it. Ive had it for 3 years. About 4 months ago he put me on Gabapentin...& it worked for me. I was building a tolerance after a month...so he just increased the dose.

[HMBradley53 in reply to bmcentire]

I was put on gabapentin too i take 100mg 2 times a day then they up the dose. I dont take meds yet for my thyroid but I really think I need them

[bmcentire in reply to HMBradley53]

U might want to have ur gabapentin increased if it worked..thats a pretty low amt. My Dr. started me on 100mg 3xs a day..& in a month it stopped working bc of tolerance (it worked great at 1st tho). Now Im on 300mg 3xs a day. At least it will take away the pain until u get it figured out.

[HMBradley53 in reply to bmcentire]

She wanted too start me slowly, when I see her Tuesday she will increase it

[HashiFedUp]

I have Celebrex for my pain caused by immune attack (I have Hastimotos). With Hasti’s my immune system attacks healthy muscle cells causing tightening and pain. I cant do anything without Celebrex. It’s changed my life! I can exercise, work, move! It’s a cox-2 inhibitor so blocks pain messages. It’s not cheap so doctors can be reluctant to prescribe it but force the issue. Also get sports massage monthly. It’s very effective also. Good luck.

[HMBradley53 in reply to HashiFedUp]

Thank you for that info. I see my Rhumetologist Tuesday for my results and I also want too see ifshe will prescribe LDN

[m7-cola in reply to HMBradley53]

I found that my muscle aches went when I reached optimal thyroid medication along with good vitamin and mineral levels.

[HMBradley53 in reply to m7-cola]

My step daughter is a nurse and she has said the same thing it's m thyroid causing all of the issues

[Hidden]

The only time I had pain like yours was after my TT. I was on Levo for about 8 months and then I joined this site. I now self medicate with NDT and feel well. Getting back to my previous fitness levels with no pain.

[Hidden in reply to Hidden]

Hi Bunnyjean, How much NDT you On? I'm on 2grains and still troubled by hideous legs pains.

[Hidden in reply to Hidden]

Hi I am taking two grains per day split 1 x at 6am and 1 x 2pm. Your FT3 is low so maybe a slight increase by another half grain?

I don't have Hashi and the only thing making my legs ache was Levo. Are you taking K2 with your vitamin D these two work together to direct calcium to your bones instead of your soft tissues. I hope that you sort things out soon, good luck.

[Hidden in reply to Hidden]

I recently tried to get 1/2 grain increase but Endo said I was fine and it would be unethical for her to increase me, I just shook my head not much else I can do.

[HMBradley53 in reply to Hidden]

I think endo's should have to have a thyroid disorder so they know how we feel and they are not faking or being hypochondriacs....I'm fed up with them they don't seem to care.

[Hidden in reply to Hidden]

I actually never visit Endos or the GP I just buy my own Thyroid s online and self medicate. That way I don't have the (so called experts) keeping me ill or wasting my time and money it's so much less stressful too which has got to be good for health.

I obtain my own private blood test and post the results on this site for answers.

Only by doing this have I become well again and I am 72 years old and fit.

[MrsBoilie]

I hd something similar with regards to exercise tolerance and pain. It's rubbish so can understand how you feel but now with T3, T4, CBD oil, gluten free and most importantly dairy free I feel much better and can do more.

Dairy free is tough I have to say but I have found it worth it and can now go for longer walks and do weights and CV at the gym. Nothing crazy but it's movement and I feel good. Plus less pain and I have even come off some of my other meds for "Fibromyalgia".

I hope you feel better soon.

[HMBradley53 in reply to MrsBoilie]

Thats what Im hoping having my Thyroid labs and that being the problem and getting the right meds

[Happysmile]

HMBradley53 Just a thought, but have you had your vitamin B12 tested? After years of muscle pain most of mind disappeared after finding out I was deficient and receiving regular B12 injections. Unfortunately a year later pains have returned, but I think for a different reason.

[HMBradley53 in reply to Happysmile]

I just got back from the Rhumetologist she said it's the Hashimoto's causing inflammation in my muscles causing my CK levels to rise. She said no more exercising and too let things rest up I can walk and that's it. My TSH is just slightly over range so where it has been rising steadily and after everything she tested she is positive it's Hashimotos. She upped the Gabapentin to help with my muscles. I see my PCP she said that should should run a full thyroid panel again too see what's going on.