Could my symptoms all be caused by hypothyroidism? Here’s my story- I had thyroid removed for thyroid cancer in 2009. Last June I fainted and was hospitalized and found out my TSH was up to 17, so the doc increased my synthroid from 137 to 150. A month later the nurse at my regular endocrinologist office lowered it back to 137. A month or so later I suddenly noticed I was feeling extremely weak, to the point where I was falling just walking (used to be a runner so that’s not normal). After being misdiagnosed many times my real thyroid doc said a couple months ago that I wasn’t absorbing my medication and increased it to 175. Also went from 5 mcg cytomel daily to 10. She said in time the muscle weakness should get better. Anyone have similar experience? Wondering if I should wait it out or see another specialist like rheumatologist. The increased dose has improved other symptoms I had like terrible blurry vision episodes. Thank you for your help!
Could my severe and sudden onset of muscle weak... - Thyroid UK
Could my severe and sudden onset of muscle weakness be due to being very hypothyroid for a while?
The thyroid controls so much of our body. I am 37 and had a full thyroidectomy when I was 18 including my parathyroid glands, hit menopause at 26 and now I have hypothyroidism and I am hypoglycaemic, lost my job due to being hospitalised 6 times this year and struggle massively with muscle weakness and day to day activities. I feel like a young person trapped inside an old body. I’ve learnt the persistence with the doctors who have been great is the key. You know your body and if you are struggling seek help. Hope this helps and you feel better soon xxx
Yes I’m 37 in the same boat. Struggling almost house bound. No one talks about that part of the illness .. the aftermath of a thyroid issue.. recovering is really difficult .. I feel the same .. there’s 80 yr olds fitter than me 😩
Awww lovely it’s awful isn’t it. How long ago did you have surgery xxx
I haven’t had my thyroid out but I am having exactly the same problems your having after a autoimmune attack.. 3 -4 yrs ago now it’s awful xx
I often see people of 80ish carrying full shopping bags, which I haven't been able to do for a long time. A physio told me I was weaker than his patients who were 30 years older than I was!
That was nice of him to tell you .. I bet it made you feel great
It did!! Actually, the subject of the thyroid came up, can't remember how as it was some time ago, but I know I mentioned it. He said that his mother had a problem - her thyroid kept "going up and down."
Up and down up and down.. when ever I’ve lost weight my thyroid goes underactive
I am nearly 73 years old and feel well on two grains of NDT which I purchase myself.
It has taken me two years to find the right dosage but it works well. I had my thyroid removed in 2015 and was on Levo for 8 months I became very ill then I joined this group, asked question, got a private blood test and then NDT.
Hi Kelly
Same here lost my thyroid to cancer 2.5yr ago and had hysterectomy 15yrs prior to thyroidectomy and when my two hormoneless lives connected I was forced to quit my job. I developed endless joint pains after losing my thyroid...of course it's ME not my hormones causing my pains.....I now walk with a cane. Sad!
A ❤️ Who would have thought the thyroid implicates so many parts of the body. Xxx
You would think after millions of thyroid suffers endless complaints the Endos and Doctor would.
I received sad news today my friend had a friend of hers abruptly pass away after being diagnosed with thyroid cancer that had grown undetected and so large it forced his trachea to the side and caused him to suffocate in his sleep..very sad.
I think Docs are too busy looking at the screens rather than observing their patients carefully. So sad for the guy ... My daughter had a lump that moved when she sipped her champagne on arrival here on holiday. The scan done in Crete revealed a suspicious node but back in the UK it was all ignored until she went privately and cancer was diagnosed. Funny that without any medical training I was suspicious and yet Docs didn't have a clue. She had weight issues and was being treated with AD's .... I despair 
I asked my friend if she noticed if his neck was enlarged she said no he looked like he always did just had a froggy throat sound when he talked, his doctor told him he had allergies....idiots.
Voice changes are a recognised symptom of a thyroid problem ... also docs today rarely do physical exaintion.
Voice issues have been reported:
Speech impairment in primary hypothyroidism.
There are several possibilities. Werner & Ingbar's Thyroid, a medical textbook, devotes chapter 8 to Genomic and Non Genomic Actions of Thyroid Hormones, T3 and T4, (TH). The book explains how the nucleus of each cell contains TH receptors and most of our biologic effects at cellular level are mediated by TH receptors. Further, TH acts at nongenomic sites, such as plasma membrane, cytoplasm, and within our mitochondria. In other words, this is where you've always gotten the energy for brain and muscles.
Your body uses TH at the genomic level through two kinds of Deiodinase proteins, DIO1 and DIO2. In healthy people, the DIO2 pathway is believed to contribute more to plasma T3 than does DIO1. Plasma is what they're measuring when they try to determine what's going on and whether TH treatment is appropriate.
According to the text, the presence of T3 hormone stimulates DIO1 expression (operating principally in liver and kidneys), while T4 levels modulate DIO2 gene expression through local deactivation or activation of ubiquitination/deubiquitination processes. In skeletal muscles, the brain, pituitary, and brown fat, high T4 causes ubiquitin to attach to the DIO2 protein, degrading it, and reducing DIO2 activity. The reverse process occurs with low T4, permitting tissues that contain D2 to modulate T3 concentrations at the local level. This is how we can drag around the house all day to weak to do anything, or feel energized, as a result of TH action. Too much TH can have the same effects as too little.
Just about everything else you could imagine to be wrong with you, as an alternative to thyroid hormone levels, can be traced to thyroid hormone levels, so you probably should hang on and see what happens for a bit longer. The physiologic effects of T3 can be felt quite quickly, and you can make 5 mcg changes fairly often. You don't have to wait six weeks. Seven days is conclusive with T3.
I go to the gym regularly and do a lot of vigorous exercise and I've done a lot of science experiments on myself with cytomel, making small, incremental dose increases with 5 mcg tablets, and noticing when muscle fatigue and cramping disappear. Sometimes I do overshoot the target and then feel quite fatigued on the high side of the right dose. I finally realized that its short half life makes it easy to observe the effect of changes within a day or two, and It's particularly instructive to stop it entirely and see how I feel as levels fall. If I feel better, it suggests I've been taking too much.
Yeah I’m still recovering from it all.. I put a post up with a similar issue..
it’s something that isn’t talked about much at all.. muscle weakness from thyroid issues.. the mess it leaves you in after and not being able to get your fitness level back.. tbh the drs don’t even have a clue how to fix it..
I’ve been left with fatigue, pain and muscle weakness.. I can’t stand up for long periods of time..
my legs start to shake inside and my body feels like someone’s pulled the plug.. my vision starts to go and what I do is end up having a panic attack which I believe has stopped me from fainting as my heart has increased..
now until they get your levels right it’s really hard to manage..
However I had some advice from a nurse that really helped me out.. she said having a bit of chocolate can help when you start to feel that shakiness in your body, the weakness.. something sweet..
as what was also happening to me was my blood sugar was dropping and my muscles felt a tremble and weak.. it’s the worst feeling in the world.. I’ve genuinely felt like I’m going to die..
but it’s helped I’ve felt it coming on when I’m trying to increase my activity.. also I try a walk every morning with my dog..
sometimes I manage half a walk and sometimes I manage more .. then I rest ..
I repeat this until I get further explanation and proper help to manage all the chronic fatigue issues I’ve had since my thyroid went out of whack 3 yes ago now.. we’ll it might even be 4 yrs ago
Mine was taken out almost 21 years ago and now I’m suffering post surgery effects, my legs constantly ache I suffer terrible panic attacks and I’ve piled the weight on. It’s awful but reassuring to know it’s not just me that feels this way. I take amitriptiline as I’m going through menopause aswell so need a sleeping aid because without it my nights would be as crappy as my days. ❤️ Xxxx
That’s awful going through the change aswell it must be hell xx hope you get better soon x
Thanks lovely you too. ❤️
I had/have this problem too and really struggled to find other posts which fitted my pattern of symptoms.
But RockyPath s reply above is the best I’ve seen it described.
I was fatigued, nauseous, had tinnitus etc, etc all the symptoms for a good nine months before I really noticed the muscle weakness. I’m not sure if it was there but I wasn’t doing enough to notice it was there, or if it developed over time. Then as my levo does was increased, it never seemed to get much better. I was increased up to 200mcg levo and the muscle weakness and limb heaviness became much more pronounced, which fits with the idea that too much hormone is as bad as too little.
I was then trialled on 5mcg T3 plus 125mcg levo and it just disappeared. I’m now surprised at how unfit I am given that I was very active and fit before my ‘crash’. But the muscle weakness has gone - I feel like I need to improve my strength and fitness again now but I have something in reserve now, I feel like I can push through and this is something I just couldn’t do previously.
Saying all the above, my gp has given me Teva T3 and it’s not working so I’m back to the muscle weakness etc again 😩 but this is only a temporary setback.
So don’t panic - I was self diagnosing with all sorts of horrible diseases! It IS thyroid related and it WILL go once you’re properly medicated 😉
Hello Bustamove86
Well, now I'm self treating with NDT my chances of bustingamove have improved !!
I'm with Graves Disease, post thyroid ablation 2005, and became very unwell about 5 years ago, and am now 6 months into DIY taking Natural Desiccated Thyroid.
Just as a point of reference :-
A fully functioning working thyroid would be supporting you on a daily basis with approximately 100T4 + 10 T3.
I think it is only common sense that when there has been a medical intervention of either surgical removal or ablation of the thyroid, that both these vital hormones need to be on the patient's prescription pad.
Some people get by on T4 ( Levothyroxine ) alone, some people simply stop converting T4 to T3 at some point in time, and some people simply need both these essential hormones dosed and monitored independently to bring them into balance and to a level of wellness acceptable to the patient.
If you have been suffering for any length of time, the adrenals have probably gone into overdrive, having had to compensate for the lack of optimal thyroid hormone replacement.
There is also the need for vitamins and minerals, ferritin, folate, Vit D and B12 being at optimal levels to enable and enhance conversion of T4 to T3.
Your Thyroid and How to Keep It Healthy by Dr Barry Durrant Peatfield: this is an excellent book written by a doctor who has hypothyroidism. It's an easy read, funny in parts, and makes so much sense for everybody living with any form of thyroid malfunction.
We may not now have thyroids to keep healthy but even more importantly we need to know what this amazing, major gland does, so that we may learn how to compensate for it's loss.
I think you've been neglected Bustomove86, due to the fact that you fainted last June with a TSH of 17.
Why were you not put on a combination dose straight away, i.e. T4/T3 as you had no thyroid gland whatsover.
Research has shown that a combination of T4/T3 should be on a 4:1 or 3:1 basis.
healthunlocked.com/thyroidu...
healthunlocked.com/thyroidu...
I think doctors and endocrinologists should keep up-to-date with research as they seem to be unaware that apatient who has a TSH above 1 with clinical symptoms needs a prescription and that all hormones should be tested, i.e. T3, T4, Free T4, Free T3 and thyroid antibodies.
Bustamove86, sounds like you are taking both Synthroid and Cytomel? These are both thyroid hormones that contribute to overall replacement, so it's easiest to list them together, like this: Current dose Synthroid 175, Cytomel 10, or even 175 of T4, 10 of T3.
It sounds like you have been really yanked around by doctors. Unfortunately they know very little about thyroid I think you've got to become knowledgeable yourself so you can double check what they do.
The first thing to do is to see your TSH, freeT4 and freeT3 blood tests. This will tell you whether you're on the right dose.
It's also good to see vitamins: Ferritin, folate, vit B12, vit D. Being hypo for long periods trashes our vitamins, and this then prevents the body making best use of thyroid hormone.
Always ask for copies of results with ranges and post them here, have your blood draw no later than 9am and as near as possible to 4am. Good luck.
Hmmm... muscle weakness could be a hypoglycemic reaction related to low cortisol/stressed adrenals resulting from chronic hypothyroidism being poorly medicated. Adrenal problems and hypothyroidism are often seen together, especially if your problems are autoimmune in nature. Might want to get your cortisol levels checked.
When your TSH starts climbing in a post-thyroidectomy patient diagnosed with thyroid cancer, they should quickly be checking Thyroglobulin and redoing an ultrasound to rule out reoccurrence. If those are negative then they should be trying to figure out “why” your not responding to levothyroxine starting with a full thyroid panel which includes free T4 and both free and reverse T3. Saying you aren’t absorbing your med, while it may possibly be true, is simply a cop out and dangerous medical practice. You could be a poor converter, you could be overloaded with T4 from a too high dose of levothyroxine, there could be a pituitary issue which makes TSH totally irrelevant.
While we do have our own issues there are days I wish I could transport all of you to the US for a thyroid medical vacation where, at least, we can find docs who will prescribe affordable T3 in amounts that let us remain healthy.
Patti in AZ
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