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Muscle weakness and hypothyroidism

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katbat45
katbat45

Hi there,

Does anyone else suffer from muscle weakness with hypothyroidism?

I've had horrible fatigue, weakness, headaches and a host of other symptoms the past 2 years. Eventually, after lots of blind alley endo tests, my TSH went to 8.2 and T4 went down to 9, so finally I was 'believed' by my gp that I was not just a hypochondriac and she put me on eltroxin. But after 5 weeks, there's not much improvement and the muscle fatigue, pain and stiffness is getting worse, so much so that I'm hobbling and waddling by the end of the day with hips, legs and feet so sore and useless. Muscles also spasm and sometimes jerk. I'm 45, have always done yoga and been active. Muscles seemed to have all turned to fat in the last 2 years. Am worried that there's something else going on with this extreme weakness so am going to ask gp for ref to a neurologist. Or could this new 85 year old body be just what I'm stuck with now?? I was on 10mg of amitriptiline for the pain but read that side effects can include muscle weakness so I've stopped that 2 days ago (don't know how I'll sleep now, but...)

Any advice would be greatly appreciated!

0 likes, 37 replies

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  • katbat45
    katbat45

    Posted

    Sorry, also have TPO antibodies of 169..
  • eva92960
    eva92960 katbat45

    Posted

    Yes, I do get muscle weakness and pain among many other things. Seems to be one of the first things to occur when things are not stable. Or maybe because it is something that is hard to ignore. I have had Neuro workup twice in my lifetime, which have been normal. I 've had hashimotos diagnosis for 4 years. Right now am dealing with hyper symptoms from over medication. Also muscle weakness again. I would say give the med dose a long time to stabilize. At least 6 to 8 weeks between changes. It took me around 6 months to start feeling back to normal, the weakness went away for the most part. I am referring to 4 years ago when first diagnosed. Prior to that I have had weakness at different times in my life that I now attribute to thyroid issues. My endurance for exercise has changed, mainly low impact or walking. While healing it is best to not push yourself. Right now it sounds like you are in the misery of a full blown flare. It will get better. I also changed my diet and lifestyle which can be big factors with thyroid issues.

    • katbat45
      katbat45 eva92960

      Posted

      Thanks Eva, good to hear that things might improve. Very very frustrating at the moment, work on hold, fun on hold. Was always quite strong before, very hard to feel myself wasting away.. Argh! Will take that advice on diet too thanks.. smile
    • april02564
      april02564 eva92960

      Posted

      Hi-I am curious what meds the doc put you on when first diagnosed? I was recently diagnosed and put on Levo-still having a TON of symptoms after 3 months on it? 
    • katbat45
      katbat45 april02564

      Posted

      The brand name is Eltroxin, synthetic levothyroxine. She put me on 50mcg and said to come back in 4months. Hmm.. Seemed a long time to me but maybe that's standard? 3months and no improvement? God that's frustrating!

    • april02564
      april02564 katbat45

      Posted

      well the thing is I did start feeling better at first-just because I think my body needed the Levo so bad! But then my body adjusted to it-and I don't think it's a high enough dose personally-even though my TSH is "normal" so now my body is still in a lull....I will be curious if my doc goes along with my suggestion to raise my levo to the next size pill which is .75. Personally I think it will help........

    • eva92960
      eva92960 april02564

      Posted

      Hello, I started out with only 25 mcg Levothyroxine and increased up to 50 after 2 months. I had been at 50 for almost 3 years then tried Naturethroid which was the beginning of my over medication problems. Now back on levothroxine trying to get my dose figured out. I was not back to normal at 3 months but much better than when first diagnosed. I just advice going slow with med increases. I hope i never have to go through the hyperthroid symptoms again.
    • katbat45
      katbat45 eva92960

      Posted

      OK thanks Eva. It's very tempting to rush to increasing the dose in the hopes of a relief of symptoms but I'll take your advice on board. Out of 10 now, how would you say you're faring? Was the nature thyroid a t4 and t3 combo? What was it about the ndt that made you go hyper? It sounds awful to be hyper, poor you. It's funny, 4 different GPs, a rheum and a Prof of endocrinology have all shaken their heads at me when I've said 'could my muscular symptoms be thyroid related?' I was admitted to hospital 2 years ago, when this began, beacause I was so weak and shaky and my oxygen was in my boots, (probably from hyperventilation, as just doing a supermarket run had made me nearly collapse). Just got those test results from the hospital last week, interested to see what my thyroid hormones had been back then. But they hadn't been tested! Lord..

    • eva92960
      eva92960 katbat45

      Posted

      Yes, too bad your levels were not checked then. Naturethroid is a NDT, I think my problem was from getting the dose increased too fast. And switching back to levothroxine at too high of a dose. Right now I am still trying to find my dose so I am not stabilized out yet. The weakness is improving and the hyper symptoms are much better. It is so frustrating that thyroid disease doesn't seem to be taken seriously or is just not understood by so many heath care professionals. Are you trying supplements to help with T4 to T3 conversion? There are some very helpful ones for the thyroid in general.

  • april02564
    april02564 katbat45

    Posted

    Yes-you are not alone. I had symptoms of a slow thyroid for 2 years? at least that I am aware of-it took that long for a doctor to believe me. I started gaining weight at least 2 years ago for no reason (i am now 46) they kept blaming it on me-and getting older. I am a VERY active person always been a normal weight....then I started losing energy-gaining more fat-then tons of more symptoms came on after seeing 2 specialists 3 times total-I went back to my GP who then saw what bad shape I was in-and did full testing-of course by that point my TSH was above the norm. She started me on the generic of synthroid almost 3 months ago-and my TSH is "normal" 1.75 but I still feel very weak and get short of breath at the drop of a hat. I have never heard the med you are on? I actually emailed my doc this weekend and asked if we could raise my Levo med to .75 I am taking .50 now-of course I don't want to over medicate-but I also read some with Hypo feel better when their TSH is around 1.0 but everyone is different! You actually just started your meds sounds like? It takes a minimum of 6-8 weeks for them to even stabalize in your body-so you can see how you feel in another 3-6 weeks? But yes-getting back to somewhat "normal" is a slow process with a thyroid issue......but you are definitely NOT alone. I used to walk in the evenings at least 4 times a week-honestly now I can hardly make it around the block-as I also get a lot of muscular pain in my back-simply because I think I am being "undertreated" for my thyroid- 

    • katbat45
      katbat45 april02564

      Posted

      Yeah it's so hard to know what to think about it all. Having tsh in range but still not feeling well surely should raise red flags for doctors but it doesn't seem to. I asked my doc if my normal 'healthy' tsh, before I became sick, conceivably could have been right down the bottom of the range ie . 5 or so and she said yes, that she has another patient who feels best with tsh at . 5 and T4 in the mid 20s. Exactly, everyone is different eh? Yes I get really breathless too, so horrible..

    • april02564
      april02564 katbat45

      Posted

      Through all of this-I have learned as long as your TSH falls within the "lab" normal range-the doctors will do nothing-and seem to think any symptom you have-is of your own  doing-that has been my experience for 2 years? Even when I knew my thyroid was failing-and would get tested-each time my TSH being higher-the specialists still failed to believe me-until my TSH went above their "normal" range for their lab. Sad really........Sadly-it seems you need to find a specialist who has this disease themselves?!!! Then that doctor might actually believe others with the same condition? 

  • MtViewCatherine
    MtViewCatherine katbat45

    Posted

    Hi Kat, I totally undersrand what you’re dealing with. I feel like I went from looking like a supermodel to looking old and out of shape in a few years. 

    What you experience with difficulty getting diagnosed and treated are typical. I consider my thyroid disease to be advanced, but have fiund the synthetic meds to worsen my thyroid disease. My experience is that ghe synthetics are pkacebos with side effects. I feel the NDTs are more useful, but probably best used as a temporary protocol. 

    The things that helped me the most, that no one else talks about are eating to address chronic pancreatitis (this in addition to glutenfree oaleo style diet), supplementing with essential amino acids (in addition to viramin and mineral supplements). 

    I’ve alsp recently started addressing my sinus and ear issues, as these are well documented to be associated with hypothyroid disease. 

    I have become so fed up with the complete lack of effective thyroid treatment, that I no longer bother wasting my time and energy dealing with a useless system. I focus my energy and resources elsewhere, and am feeling much better for it. 

    • katbat45
      katbat45 MtViewCatherine

      Posted

      Thanks, I'll look into those supplements and will ask about NDTs. Yep, same here, I look at photos of myself 2 years ago and I look 10 years younger. Grrr! :D It's a relief to hear from you all that muscle weakness is a problem cos no doc or endo I've seen has reassured me that that IS a hypo symptom and will resolve . Sorry to hear of all your difficulties. Universal frustration with doctors is also a hypo symptom eh!

  • leigh74005
    leigh74005 katbat45

    Posted

    Hi. I’ve had muscle weakness since I started taking levo. Even when my tsh is below 1, my endurance is soooo bad. Even aches my arm to brush my feathers sometimes. I personally think I may be allergic to the levo. I felt fine before I started to take it. I now have extreme fatigue, itchy skin with no rash, constipation and achy muscles. I have 2 small children that I just don’t have the energy to play with. Really frustrating. I am only 40 years old and I feel like I’m 80. 
    • leigh74005
      leigh74005

      Posted

      Brush my teeth lol 😂

    • katbat45
      katbat45 leigh74005

      Posted

      Sorry to hear that Leigh, i do think my weakness has got a bit worse since starting it but can't be sure. I'm the same, washing hair sometimes feels like a marathon. (can't imagine what it's like if you have feathers wink Will your doc try something else then?

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