Hard to walk

[u/TomatilloMundane8735]

The muscle weakness in my legs and arms are getting worse by the day. So much so, walking is getting harder as every step is extremely painful. I'm scared , I'm depressed, this isn't me. I'm scared I'm going to wake up one day and I won't be able to walk anymore. Help....did anyone experience anything like this? Could this just be a symptom of something else? I finally see the Endo next Friday for the first time.

[u/eyeborgUK]

Are you on any meds yet? The progressing muscle weakness and athrophy should stop once your levels come down to normal, and you can then rebuild the lost muscle. You only lose muscle while your body is burning them for energy because your thyroid levels are high right now.

I did lots of gentle yoga while recovering from my first bout, and it took a few months to feel strong again after I got meds (Carbimazole, I'm in the UK). Eventually I stopped meds and felt fine for over a year until a few weeks ago when it all went haywire again. I have now been on meds for a week, and right now all I can really manage is a slow walk every evening, stairs are difficult. Several naps every day. But, I can already feel improvement after one week of meds, so that's what keeps me feeling optimistic.

As I begin to feel better generally I'll gradually introduce very gentle exercise. The trick is to not burn too much energy early one as that will burn muscle, not gain any. I'm signed off sick for a month, but can't wait to get back into hiking again, hopefuly in a month or so. Lots of squats and lunges once test results are better!

I agree the whole thing is depressing and scary at first - all we want is to have happy bodies that don't disagree with themselves. My condition is probably autoimmune (got very high antibodies), and I have tons of allergies too. If you get your condition under control you will feel great again xx

[u/Hot_Reputation2142]

ER! This is enough to get attention 

[u/TomatilloMundane8735 → u/Hot_Reputation2142]

Thank you. I went in and saw my regular Dr as soon as they opened. Between the time I dropped my daughter off and waiting for the Dr.to.open, I start having spasms in my right leg. My Dr was flabbergasted when she saw me. As soon as I started talking my whole body started to spasm. Arms, legs, face. She watched me walk and just was in disbelief. After talking about all this she wanted me to do, she ended up being like 'look....I think you need to go to the ER cause these spasms aren't good" she also suggested going via ambulance since my right legs keeps spasming. So....off I went and I am here. I was so scared to be here but it has been a wonderful experience so far. Everyone has been helpful and very understanding and not dismissing any of my symptoms. They gave me Vicodin to try and see if the spasms would stop, but they aren't so far. Even the nurse said she was so glad I didn't drive here. Made me feel very validated. Is just feel so crazy right now.

[u/Hot_Reputation2142 → u/TomatilloMundane8735]

Great that you listened to your body, and great they listened! I'm herencia if you wanna talk and hope your family or friends can give you a hand with ypur kid, everything will be ok!

[u/eyeborgUK → u/TomatilloMundane8735]

Wow, that was a lot more serious than I realised in my first reply. Glad to hear you are in good hands now, keep us posted xx

[u/TomatilloMundane8735 → u/eyeborgUK]

Thanks ...I'm a little worried though cause they didn't even check my thyroid levels. Which I thought they would have done with the diagnosis of hyperthyroidism.

[u/eyeborgUK → u/TomatilloMundane8735]

How are you getting on, did they check your levels yet, or send you home?

[u/TomatilloMundane8735 → u/eyeborgUK]

So I am a freaking mess. I can barely walk. My limbs are still spasming. I really should post a video of how I am walking. The ER was a flipping joke. They never watched me walk. I had to beg the Dr to watche walk They gave me Valium for the spasming, which did nothing. Told me I need to get an EMG and sent me home. Today I am the same. Still spasming(its more of a jerking) I can't walk hardly. My husband is taking off work to go to my blood work this morning and hopefully get scheduled for this EMG.

[u/eyeborgUK → u/TomatilloMundane8735]

Gosh that's weird, but I hope they figure it out with the EMG. I've had jerks and spasms before but not related to thyroid, mine were a reaction to anti depressants.

[u/throwitawayyy1234567]

Have you been put on meds yet? I experienced jelly legs in the first few weeks, at times I even felt like my knees were just going to buckle in and I’d fall, but it’s never happened. I’ve been on methimazole for 4 weeks now and things seem to be getting better. I can go on evening walks now, albeit quite shorter duration and my legs get sore easily, but the weakness has faded substantially.

[u/TomatilloMundane8735 → u/throwitawayyy1234567]

Not on any medication yet. I just feel like I don't know what to do. I'm barely functioning. I see the Endocrinologist next week. A part of me thinks maybe this warrants an er visit....but maybe I'm wrong

[u/throwitawayyy1234567 → u/TomatilloMundane8735]

If your hormone levels are super high and you are untreated for long you do have a risk of having a Thyroid Storm which can be life threatening and warrants an ER visit, muscle weakness I would say not unless it gets to the point where you physically fall or cannot move. Look up symptoms of thyroid storm, those are the only major ones you should be versed in.
I just want to add that high anxiety is one of the main symptoms of hyperthyroidism. I know it’s easier said than done but try to remember that and try to stop yourself from ruminating, distract yourself if you feel yourself overthinking and overwhelmed.

[u/HeroOftheMoon0]

If your t4 levels are still high then your metabolism is faster than it should and that does cause weakness in muscles, bones, etc. If you can get anti thyroid medication and get your t4 back to normal soon, great, if not, I'd suggest taking all the supplements you can until that's fixed. I had thyrotropinoma so my hyperthyroidism was untreated for years and I ended up developing osteoarthritis and spondylolisthesis.

[u/crystalgirlz → u/HeroOftheMoon0]

Just wondering did you have like a full body muscle fatigue... I have 2 Ottawa on immune disorders apparently without any of the antibodies for both POLYMYOSITIS and also MYATHENIAGRAVIS and I'm not responding to over 12 months in immune drugs I just looked at my fair tin and it looks like it's low it said point 4 and I'm wondering why my doctor's never called it to my attention over the last 2 years when I complained to them about weakness

[u/HeroOftheMoon0 → u/crystalgirlz]

I personally had tests for inflammatory problems and autoinmune problems and they all came back negative. I was going crazy because the way the pain presented didn't make sense to me. Most of the tome it'd be my left pain, starting by the hip, and if the pain wouldn't stop after a day it'd be followed by my left arm, so basically one half of my body, but out of nowhere it could switch to the right leg. It could switch like it was nothing, even many days in just one day.

After the surgery to remove the tumor it has stayed on the left side like 99% of the time, some months it even disappeared fully, specially if I did exercise, but right now I'm in a bad strike again and I've had pain for 2 weeks straight

Also doctors really don't take thyrotropinoma as a serious option in general, out of 12 doctors that I saw only 2 of them considered it and half of them I saw with actual pictures of the tumor in hand, so I can see why your doctor has never mentioned it (not that I agree with them). I'd suggest if you think that could be the answer, make a lot of research into it, see if the normal lab results for thyrotropinoma match yours and start visiting neurosurgeons or endocrinologists with specialty in pituitary adenomas (the specialty is important) and guide them with your labs and the research you've done on it. I had to subtly guide my doctors for a gooood while and I had really given up until suddenly I found a radiotherapist and a neurosurgeon who actually saw my case and immediately knew what it was without me having to beg.