Sorry been away as been really down!

I think I missed a message on here as seemed to have disappeared out of my messages section - dunno? Anyhow yeah since I been having a tiny bit of mental clarity with the T3 but thats all as my pain and depression seem worse......Did I tell you when I bend down or crouch I cant get back up again....anyhow yeah Ill keep trying it.....take care! Anyone know why I have this prob getting up off the floor?

Cortisol tests arent back yet.

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  • Before I was diagnosed with Graves and my thyroid was really over active that was one if my symptoms. I take a lot if photographs and I found that once I got down to ground level either crouching or kneeling I just couldn't get myself back up without holding on to something or getting my husband to pull me up. My thigh muscles had kind if wasted away.

    Since I've been treated I have no bother getting myself up off the ground and my thighs are back it how they used to be.

    Something makes me think you aren't hyper though so this probably won't help you much :-)

  • Fruitandnutcase

    Gives me hope my thighs will regain strength. My ck was 626 range29-143. Before I got meds and TSH 95.58. I felt like my muscles were detaching from my bones when I laid on my side. It's a year and a half still not there yet with the muscles weakness. But reading this makes me think things may repair when my levels are normal for a while. It's the first time my TSH is at what they call a normal level after two blood test. Anyway thanks for sharing xo......Susita

  • Have Hashi's forgot to tell you that. I am sure you guessed that LOL.

  • Fruitandnutcase,

    I can relate to this. I have all hypo symptoms and a CK level of 4700 - all causes have been ruled out by all specialists. I too am noticing that I am unable to get up when I crouch down and my muscle testing shows 30 percent below average. Luckily I have found a doc to treat thyroid myopathy but it has not gotten better with high dose 180 mcg of T3 yet after three months.

  • Wow your levels were really high. When I started on meds.... which at first was an..... over dose......they had to take me off it quickly i lost like 15lbs in 3 weeks which was the good part..... my ck came down to like 143. Seems my arm muscles heal quickly ........but my legs..... maybe its just a matter of time........they never even check it again typical.....Hard to find a really good doctor these days. Thinking of you and so many people I read about on here who are in so much worse shape. Wishing everyone the best! xo

  • I havent checked mine since being on T3 but am seeing a specialist again at the end of September to see if there is a change. He does not know that I am on T3 as he doesnt think this is the problem, although he initially felt is was thyroid myopathy. God...if I have all the symptoms of hypo including and elevated ck then lets just agree that I am am hypo regardless of what the labs say!

    My shoulders too are very tired. It does fit the classic fibro bill but hopefully this will sort itself out. I used to be very strong, fit, active. I am only 35 and feel like I have aged 10 years in the last 12 months.

  • If they will check it get it done. My Endo will not say my legs or anything else is my thyroid except tired. He said he never had anyone complain about their legs. He has had me crying in the beginning when my mental state was very teary. I am hanging in there with him right now. But he maybe on his way out. I bet I will end up with an RA doctor also. You are so young I am 58. And I also was physically fit. I couldn't figure out what was wrong with me...... go to the gym get on a treadmill for like 15 minutes and go home...... then I quit. It was a long time before I found out about this mess. We must be in group take a pill and its not over yet! I will keep you in my thoughts and send good ones your way. xo Susita

  • Thanks Susita.Thyroid myopathy is classic with a high Ck level. It is the first thing they checked here over and over and over again when the ck level went up. I also had two muscle biopsies that showed non specific mitochondrial dysfunction and atrophy of type two fibers - classic hypo.

    I too used to exercise - 45 min on treadmill would be nothing. now I do 20 minutes and feel like i am going to be sick - nausea, weakness. I have not gained weight, if anything lost 5 lbs but have totally lost all muscle mass so I look bigger and unfit but am actually smaller than I was weigh wise.

  • Never hear of thyroid myopathy I need to read up. Muscle biopsies sounds a bit unpleasant. Did they say it could repair? Its true about the muscle mass weighing more maybe why I have lost weight. But I am still over weight. Like 160 5'6....but I was up 180"s unreal when I was your age .....125.....then as I aged 142 was fat LOL......I really hope you get some relief and thanks for the good information. Not sure I am any help except I really feel for you. xo Susita

  • Thank you Susita. Certainly look into it: here is a link....http://emedicine.medscape.com/article/313915-overview

  • Suzanni

    This is it! Explains it .........thanks so much! I should make a copy and take it to the Endo LOL. Thanks again for that! xo Susita

  • If your thyroid values were ever abnormal there is little or NO doubt at all what the cause is. To my understanding the pain should disappear when the patient is properly medicated. As I understand....low thyroid....low mitochondrial function....increased lactic acid....etc.

    I am so glad that I could be of some help to you. I am also deeply troubled that your doctors dont know this.

    Be well and all the best Susita

  • Suzannai

    Thanks again my dear have a great weekend! xo Susita

  • I feel exactly the same.....I have alot of weight gain too. I am 41.

  • Really! Oh dear....I really hope things change for you....keep your pecker up! I know how hard it can be.

  • Gosh you have had such an awful time, you must be really glad things are getting to more normal levels. Hopefully once you get a bit better your thigh muscles will sort themselves out.

    Must say I look at my thighs and sort of wish they were still a bit withered - not too much though - just enough to fit into all the size 10 trousers I had to get because everything else was just hanging off me and that don't fit now :-(

    Hard to believe your thyroid can affect your muscles - my feet used to be really painful I could hardly walk on them when I got out of bed - I couldn't really lift them off the floor at one point - I kind of shuffled them along the floor. Fingers crossed yours improve like mine did. x

  • Maybe I just need to be patient. I was in this condition for a long time I believe...... kinda hid it from my family though I had MS. Had a brain scan and that came out ok. I have the foot thing in the morning until I get moving. My thighs look like a bunch of wrinkles LOL....I should complain so many worse off. Thanks for your reply the best to you. xo Susita

  • Mine were like that and so were my upper arms - all kind of shrivelled looking.

    I agree patience, then one day you realise you can do something you used not to be able to do or you realise your palpitations have gone etc. good luck :-)

  • You are so sweet. And I believe your right! Thanks for your kindness. xo Susita

  • :-)

  • Sorry to hear that....I hope you and I feel better soon ....is real embarrassing at times....I have to get husband to help me up.

  • Sorry to hear that happened but so glad you are feeling better that is great...yeah Im hypo/Hashis.

  • Anuba

    Not sure if your reply is for me. But I read about thyroid Myopathy. Seems to fit for what I have going on. And it seems that it can heal with time. I am a bit new to writing on here. So sorry if I am replying when I shouldn't be.........Susita

  • Sorry you haven't been feeling good, Anuba. You're having difficulty rising after crouching down because of muscle weakness, a typical hypothyroid symptom. I used to have to haul myself up using the shelves in shops if I crouched down, still have to occasionally, and I dread the shelf coming down on me.

  • Do you think that is what it is then....I was worried it could be something more sinister....thanks for your input x

  • Are your Vit D3, B12, iron, ferritin and magnesium ok? I had the same for a very, very long time, and I still wonder of it was caused by inadequate levels impairing strength and stamina.

  • Yeah Im working on those.....its odd huh!

    Hope you are a bit better now.

  • Anuba. Thyroid myopathy fits the bill. I have it too and have a ck level of 4000 at times. It is my ONLY abnormal test despite all other hypothyroid symptoms including myxedema.

  • Hi everyone. It is so good to hear that I'm not going off my nut with my leg pains, muscles in thighs don't work, have wastes and I cant get up off the floor either. all my lovely high heels are in the cupboard because my quads wont support my forward movement and my increased weight makes them insufferable. I am also glad to hear that my feet killing in the morning, to the point where i cant walk down the stairs could be by thyroid... You start to think you are falling apart. MY love and hugs to all who are suffering, sorry you are bad too. Thanks for making me realise I'm not alone. x

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