Asking about muscle weakness... again

[Murphysmum]

Ok so I think I’m about there with my T3/T4 balance. Having recently found out that I need very little T4, this has made the whole picture clearer.

I met with my endo a couple of weeks ago and she was happy with where I am too.

My question is, has anyone else had continuing muscle weakness and managed to resolve it?

Mine comes and goes on a daily basis. I cannot tie it down to thyroid meds, though it is as bad if I’m taking too much as it is on too little. My bloods now are good with regard to T3 and I’m otherwise asymptomatic.

I cannot figure this out. It’s definitely a muscle tiredness thing as opposed to true weakness.

I have a medichecks kit on order to check iron levels and I’m now pinning my hopes on that.

Can anyone shed any light? Please let there be someone who has had this same issue!

[Hidden]

Hey Murphysmum, glad to hear you found the balance and that you are feeling asymptomatic, amazing result!

Re weakness/tiredness, will you be checking b12 as well? Do you take iron supplements?

If all negative, maybe you do need time for it to resolve once dose stable now and you can hold the dose.

Worst case scenario, might be worth checking ANA plus other markers etc for other autoimmune conditions, which manifest with muscle tiredness?

[galathea]

If the iron shows as ok, check copper and zinc. Copper helps you to make use of the iron, no good having iron in your body if you cant use it. Zinc is linked to copper and has to be in balance.

Xx. g

[McPammy]

Hi. I know exactly what you are describing. I have had severe muscle weakness. I get it if my meds are too low or too high. If my meds get too high within about an hour of taking medication suddenly I can hardly move about. My main issue originated from not converting T4 to active T3. As soon as I was prescribed T3, which did take some effort going private etc., after a very short time my muscle weakness went. Prior I could hardly walk ten steps I was in such a state. Then within a week of taking T3 I was back to normal almost.

I also did the DIO2 gene test and it was positive. I have the gene rs225014 which effects skeleton muscles among other parts of the body. When I read this on the gene test report, a large light bulb turned on and highlighted where my issue was more than likely coming from. I’m absolutely convinced my muscle weakness is due to poor conversion of T4 to T3 effecting my skeletal muscles. As you say it can go either way with the medication. If muscle weakness comes on I go for a blood test at my local hospital. My GP has given me a spare blood form for such occasions. It’s been proven from my test results on a few occasions that if I’m over medicated my muscles suddenly go very weak or if I’m under medicated the same thing happens. So I’m on a tight rope with my medication. I have to cut my T3 into quarters and be very careful I don’t overdo it. I’m on liquid Levothyroxine so that’s good to manage as I measure it in a syringe. I have to split my 75mcg dose into 2. So I draw up 38mcg twice a day. As too much Levothyroxine in one dose can make my muscles start collapsing too.

I don’t know if any of this will help you. I just needed to reply as I’ve not heard of anyone suffering with the same skeletal muscle issues as myself in here.

If you need to pm me please feel free. I’m willing to help anyway I can. I know it’s difficult to try and make some Drs understand this.

I too have ferritin deficiency and B12 deficiency. I’m on B12 injections and get ferris fumerate 210mcg for my low ferritin. I can’t seem to get my iron up I find that difficult. This is mainly due to being a vegetarian for 30 years.

[Murphysmum in reply to McPammy]

Thanks you so much for your reply. Gees oh!

This sounds very like me. I’ve discovered over the last few months that if my dose is too high, it gets worse, and that levo isn’t helping but hindering me.

It’s really been confusing me as I’ve had times where it’s gone completely, there a little or days where I can barely hold my arms up to fold laundry.

I know it’s most likely medication because when my troubles originally started, I didn’t have this symptom. I had EVERYTHING else! However, under the direction of Dr Toft we increased my levo dose up quite high and that’s when it started. Since then it’ll come and go.

I thought when I started T3 that was the breakthrough moment but even now my levels are good, it comes and goes. This week has been especially bad.

I’ve discovered that levo isn’t good for me which links in exactly to what you say about not converting T4. When I stopped my levo before Xmas I felt so much better within days. But then the peaks n troughs returned so I have been trying to add in a little levo but not too much.

My current endo suggested that if I found this didn’t work I could try dropping the levo out and taking my T3 split 5x per day. I’ve been trying to avoid this as that’s just a pain! When do I fit in supplements?

Your reply is really helpful because is suspect this is my problem and it tells me I’m probably on the right track.

I’ll pm you if I may because I think your experience could be very useful 😊

[Marz]

I once made a note about B12 being involved in conversion of ATP to ADP affecting muscles. It's in my address book of all places so I must have been away from home 😷 - and a long time ago. I was interested as I too have weakened muscles which I refuse to accept as part of aging 😥

[Whitecliff]

Hi I suffer with periods of muscle weakness and sometimes paralysis. This is worse when my thyroid levels are low (I have Hashis and I am treated with T3/T4). I am also treated for Hypokalemic Periodic Paralysis, which is caused by a sudden drop in potassium. There are five subsets of Periodic Paralysis, one of them being Hyperkalemic (high potassium) caused by extremely high thyroid levels and often seen in Asian males. I have often thought that my muscle weakness and paralysis is caused by low thyroid levels leading to low potassium levels, but science has not moved on enough yet to find the genetics and Neurologists appear only interested in the TSH reading.

[magsyh]

I had really bad muscle weakness was unable to do much at all. Couldn't lift my grandson, not even as a baby. I discovered it was all down to low vitamin D. Since I got my levels up life has returned. I can now do most things, even hoover x

[Batty1]

I also have muscle weakness and I have recently developed petchiae on my lower legs that comes and goes and this strange lite red net like rash on the side of my neck/face and red rash across my nose and cheeks that never leaves (no itching,burning or bumps) and I have bruising that I can't recall how I got . My labs have been good and this has been the best I felt since losing my thyroid...I need to see my doctor but the Corona has put a pause on my going in.....it's always something when you suffer with thyroid problems "sigh"!

[Batty1]

It looks like I had a fight with a blush brush ...starts at one ear and goes straight across cheek and bridge of nose to the other check and ear....its not flaming red it's more of a rosey color no bumps or sores just a rosey color.....never had this before in my life....could be old age or rosacea, maybe.

[vocalEK in reply to Batty1]

It sounds like Lupus.

[Batty1 in reply to vocalEK]

I thought so too but I’m told by Rheumy no .... my niece was diagnosed with lupus last summer and she has thyroid issues.

[Murphysmum]

I’d agree. Mine is definitely from over as well as under medicated.

They’re never sore either, “weakness” isn’t strictly correct I suppose, it’s more very quickly fatigued. Like immediately!

Glad to hear you got sorted, I think it’s a case of tweaking doses for me.