Since I had my thyroid removed 10months ago, amongst other issues it's becoming more notable that I'm losing muscle strength, muscle mass and muscle definition. I struggle to lift and carry small heavy items and even shopping basket and I really notice a big change compared to before TThyroidectomy.
I've not been to the gym in over 18mths until last 2-3 weeks I'm doing some light weights with 15-20 reps x3 and oddly my muscles don't ache and have seen no improvements to strength - my arms feel flabby, my legs feel weak.
Has anyone noticed any changes like this?
Am I expecting to much to soon?
Does Removal of thyroid change muscle development, soft tissues etc ?
If anyone has any insights be very helpful to understand.
Thanks in advance to all
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BSGTraveller
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My own view is that thyroidectomy causes a great change to your body and no matter how well levothyroxine works, it's not the same as your own thyroid gland. The exhaustion and adjustment after thyroidectomy takes a toll and inevitably you are less active while in recovery. This can take quite a few years for some people. It's good to keep doing gentle exercise though. Maybe muscles don't respond in quite the same way to begin with? Make sure all your vitamins are optimal to help your body function well.
Looking at these blood tests, the most thyroid thing is that your freeT3 is a little low. Ideally you want it to be in the top third of the range. This is the most important of the thyroid panel, as T3 is the active hormone your body actually uses, so this will be the closest to symptoms.
Unfortunately when we take T4 only replacement all of that T3 has to be converted by the body. Your freeT4 is quite a bit higher in range, showing you have a slight conversion problem, and your reverseT3 is also high. This is an inactive form of T3 that blocks the active form. This is made from T4 for regulation reasons, but when we're ill the system can go a bit haywire.
Overall you could do with a dose increase and you will probably feel much better. Ideally it would be if T3 or NDT, as more T4 may increase your rT3 problems. Although if only T4 is available I might still risk it in your situation and recheck rT3 later. It's very hard to find good information on rT3
In vitamin terms, there is also stuff to work on. Vitamin D is deficient and this needs treatment. This can give you symptoms similar to being hypo so may be the cause of your symptoms. You need a loading dose of vit D, so don't accept anything lower. Around 100+ is the number to aim for. Hopefully others will advise who know more. Personally I take 2,000 international units per day, and that keeps mine around 100.
Your ferritin and folate both look low. Ther rule of thumb is they should be about halfway. I don't know much about raising either of these, but hopefully you'll get some more advice, or can search on the forum.
I've seen lots of people get marked as high B12, but I think it's that the ranges given at very low in the UK. I think 500 is often cited as a good number.
If you can try and figure out what causes your high rT3: for example malapsorption of nutrients due to stomach or intestinal issues (often found in thyroid patients); low iron levels; inflammation (high CRP or homocysteine); B Vitamin deficiency; adrenal malfunction (low cortisol causes muscle weakness); other hormonal imbalances.
Even if you were given T3 or NDT you would run into problems until the rT3 underlying causes are dealt with.
My lab’s top of the range for B12 is 1100 with similar values for low levels, so could that possibly be a typo?
Maybe you are, genetically, a bad converter of T4 to T3?
Be careful to not use up your lowish T3 supply in the gym
Be sure to take vitamin d with calcium. Optimal level is in the 60's what is your thyrogobulin level? That indicate whether you still have cancer present. I am 3 years post thyroidectomy and have horrible muscle pain and weakness but t3 t4 is in optimal levels. Check out side effects of levothroxine and synthroid. This is one of them. Looks like you need b 12. Dessicated throid meds are better. Good luck.
All I can tell you from my experience is I felt horrible on 125 mcg of Synthroid for about 8 months. It wasn't until I found an ENDO and it wasn't easy who would give me T3 that I felt better and it was an immediate 5mcg of the generic Cytomel and that same day the energy level was so much better and I've been better since. I don't know why the reluctance to prescribe a little t3 along with the t4..
Muscle loss occurs in hypothyroidism. I have witnessed it.
I suspect that it is often missed or ignored as the context is someone who might be gaining mucin (and sometimes other weight).
We can speculate on the reasons - whether inability to absorb the required nutrients from the hypothyroid gut, lowered temperature, lack of the stimuli which usually preserve muscle mass, or something else altogether - but happen it does. And it can and does affect the heart.
Sorry I cannot provide any figures of how often it occurs in hypo versus hyper.
Your thyroid hormone levels look a touch high in view of the low TSH. I know some people are hypo with these levels but in general it would suggest hyper. You could look at other markers of overactivity such as fine hand tremor, rapid pulse, low cholesterol and highish SHBG. The easiest option would be to reduce your levothyroxine by 25 mcg, see how you feel and try it for three months or so. If you were to do this it would make sense to monitor your muscle progress. I believe they can measure your grip strenth, this would be an objective indicator of progress. Of course muscle loss could be due to something else, are you on any medications that might affect your muscles?
That's an interesting observation. I have had lots of tremors or spasms but mainly my rh forearm muscle, nerves or soft tissues hurt in various ways and swells as does my rh hand wrist joint and fingers. Very odd.
I suffer from stomach bloating, burning have got acute reactive gastritis but gastreologist advises no action needed.
Not on any other meds or sups avoiding until I understand what's going on.
Hi - hypo can and does cause muscle issues when under-medicated. But it does get better when on optimal medication and with good nutrients. I see you had some very good advice from SeasideSusie on your last post - are you now taking good quality supplements to improve all those figures? With hypo nutrient levels are vital to helping the body function properly.
As to the stomach issues - many of us have underlying food intolerances, the most common being gluten - and it is usually recommended to trial a strict gluten free diet for at least 3 months to see if there is any improvement in symptoms. Another aspect of hypo that can cause issues is low stomach acid, which medics almost universally declare to actually be high acid and prescribe anti-acid drugs which makes situation worse. Symptoms appear very similar between high and low. Many hypos use either a betain & pepsin combination or apple cider vinegar before meals to improve the break-down of food, stopping it passing into the gut in a partially digested form, causing problems with gut bacteria balance, nutrient uptake and transit problems.
Be patient, it can take a while to balance out all the factors involved, but it can and does get better.
Hi jimh111 , could you please clarify where are you seeing figures that would suggest hyper? ft4 20.2 (12-22), ft3 4.44 (3.1-6.8). Those figures are firmly in the under-medicated hypo territory, nothing near over-medicated (impossible to be hyper as writer is actually hypo). Are you maybe listening to the doctor's mentality of saying that an under-range tsh means hyper? Your advice to reduce levo is actually exactly the opposite of what is required, so please be careful with your advice, maybe read a bit more on the forum?
A small section of the population can be hypothyroid with normal or elevated thyroid hormone levels and a low TSH. I was one such patient. However, for perhaps over 99% of the population a high fT4 and suppressed TSH would indicate hyperthyroidism, especially if it is the result of giving levothyroxine to someone who has never been hypothyroid.
Muscle wasting is a sign of hypERthyroidism. Patients with longstanding severe hypOthyroidism can lose weight. BSGTraveller is not such a patient, he has had papiliary thyroid cancer and high hormone levels throughout. In a previous post he had an fT4 of 25.4 and reported more symptoms.
It is important to be careful with advice, especially when a disorder is progressing, higher hormone levels have already existed and did not help. Be careful about reading on the forum without taking a critical and analytical approach and above all apply common sense. As a thyroid patient I find I'm continually caught in a competition between some patients, 'alternative' doctors and endcrinologists to see who can come forward with the most nonsense. It's hard work being a patient.
Hi jimh111 - thank you for that and your advice on my knowledge. I am going to answer your points, then maybe you can be gracious enough to answer the question I asked you , rather than just quote your own case.
" Hypothyroid with normal or elevated hormone levels and low tsh". If by normal you mean in range, then yes it is possible to be hypo. If by elevated levels you are referring to elevated ft4 - with either low or no ft3 number - then yes it is possible to be hypo, however that combined with a low tsh normally points to central or secondary hypo, as a low ft3 would normally result in an elevated tsh. That is again unless you again mean with tsh in range classed as low and not classed as elevated until it goes above range. The only way I can see for someone with actually low tsh, normal or elevated ft4 and normal or elevated ft3 to be hypo is in the case of thyroid hormone resistance, ie their cells can't use the ft3 in the blood.
"99%...high ft4...suppressed tsh..hyperthyroidism" Yes you are correct in that, but you need to take into account the context. That would be the case in someone who isn't on any form of supplementary thyroid hormone, but even in such a case a result of ft4 20.2 (12-22) would not be regarded as high, it is still within range.
"especially in case of giving levothyroxine to someone who has never been hypothyroid" . Maybe in some countries they would consider doing that, though I don't understand why. Indeed it is normal for people to have to fight to be given it when severely hypo. However, someone cannot be made "hyper" by giving them replacement hormones, they can only be over-medicated (thank you Greygoose for that!). Too much levo can produce symptoms of over-medication, but with the ft4 and ft3 results given, that is definitely not the case here. BTW symptoms of over and under are not clear cut, with many of us suffering what is usually quoted as one when actually being the other.
Now back to this case, yes the writer previously had an over-medicated result and his dose was reduced accordingly, however that was done without an ft3 result. Hence even at that point he was probably actually under-medicated given that his ft3 result above is 36% through range with ft4 68% through range. Under or over should after all be based on ft3 not tsh and ft4. Hence he is not converting well and probably not using it well either due to low nutrients as highlighted here and previously by SeasideSusie. And he is and has been hypo, given that he actually has no thyroid, therefore is producing no thyroid hormones of his own, no matter the reason for removal of the thyroid.
I asked you to clarify based on the numbers, you didn't, instead appearing to prefer to just shout louder. I can and do make mistakes in advice and I welcome those who point out my mistakes to me so that I can advise better in the future. In this case you haven't come back with a logical argument to back up your advice, instead you implied that I hadn't taken a critical and analytical approach and put forward nonsense, based on some fixed belief you hold about the topic and your particular case. As a very logical, intelligent person who has taken the time and trouble to learn from this forum, I resent such an approach.
If you still believe you are correct, then please come back with logic and clarify as I originally asked you to do, instead of attempting to patronise me.
Apologies to anyone else reading this who feels this is unnecessary and a bit of a rant. Especially to you BSGTraveller ! You came looking for advice and have got caught up in this. However I feel it is important that where advice is really "questionable", that it is challenged so that people aren't led down the wrong path, albeit by very well meaning responders.
Gillian, So much of this is impossible to understand, it lacks clarity of thought. I'll answer briefly the few points I can understand.
You seem to be saying someone can't exhibit signs and symptoms of hyperthyroidism if their fT4 is 'within range' (sic). Patients can be hypo or hyper with hormone levels within their respective reference intervals, this is the biggest problem we have with endocrinologists who confuse a reference interval with a diagnostic range. We each have our own 'set point', levels of fT3 and fT4 where we are well. If we go above or below that set point we become clinically hyper or hypo, regardless of whether the hormones are within their reference intervals.
"giving levothyroxine to someone who has never been hypothyroid. Maybe in some countries they would consider doing that, though I don't understand why." This is what is done in papillary thyroid cancer, it's how you save lives.
'given that his ft3 result above is 36% through range (sic) with ft4 68% through range(sic)' ft4 20.2 (12-22), ft3 4.44 (3.1-6.8) When I was a maths undergrad we got quite different results for these percentages! Common sense would highlight that 20.2 (12-22) is nowhere near the 68% mark. In any event hypo or hyper depends on the individual patient's set point.
'Under or over should after all be based on ft3 not tsh and ft4.' This displays ignorance of thyroid hormone action: deiodinase and binding to receptors. In healthy subjects TSH reflects thyroid hormone action, the combined effects of T3 and T4. This case is post thyroid cancer with no history of other thyroid disorders. Cells take in T4 and T3, many cells express type-2 deiodinase which converts the T4 to T3. Both T3 and T4 contribute to thyroid hormone action. Your brian uses T4 almost exclusively, except when high dose T3 treatment is used.
The clinical signs suggest iatrogenic hyperthyroidism (or thyrotoxicosis if you prefer), signs and symptoms are more important than confusing reference intervals with diagnostic or therapeutic ranges.
However, in BSGTraveller's case it is important to check out other possible causes such as parathyroid as well as thyroid issues.
I suppose I left myself open to being patronised again by miscalculating one of the sums. That slip does not, however, entitle anyone to talk to me as if I am some recalcitrant student who hasn't done their homework. Please remember this is a patient led, self- help forum, rather than a lecture format in some extremely old fashioned academic institution.
Ok, perhaps you have some specialist knowledge, but my experience of life in its various forms, locations, spheres and issues tells me that knowledge is not worth much without the communication and social skills to allow effective interaction with others. After all, aren't there many tales in this forum of people having such experiences in their interactions with the medical community? Though as to the extent of their knowledge - well I would say that self-proclamation is not proof.
'so please be careful with your advice, maybe read a bit more on the forum?' this initial comment was patronising but it was the assertion that is was impossible to be hyper that needed a robust response as it has real potential to do harm. It is still possible that BSGTraveller is hypo but the balance of evidence points towards hyper. There could be other explanations for the signs and symptoms so it makes sense to check these out before making major adjustments to thyroid therapy.
"Hyperthyroidism is a set of disorders that involve excess synthesis and secretion of thyroid hormones by the thyroid gland, which leads to the hypermetabolic condition of thyrotoxicosis."
Note - by the gland ergo, without a gland it is impossible to be hyper. Hyper cannot be created by the consumption of exogenous hormones, but is only produced by endogenous ones. However over-medication can produce symptoms similar to those produced by actually being hyper.
Correct, hyperthyroid refers to excess thyroidal secretion. But if I use the term thyrotoxicosis it conveys the impression of a large excess of hormone, literally it doesn't, but the wrong impression is given.
Again, hypothyroidism strictly means insufficient thyroidal secretion. I use the term to refer to any condition which exhibits hypothyroid signs and symptoms that respond to thyroid hormone treatment. I upset Sheila Turner at TPA when I do this and she is right in saying it is strictly incorrect. However, I think it simplifies matters to use the term 'hypothyroidism' in this manner. Often we are able to treat this 'hypothyroidism' without knowing its aetiology. It is possible for there to be more than one aetiology, e.g. primary hypothyroidism and a down-regulated axis in which case being precise becomes very difficult and confusing.
For these reasons I use hypo and hyper fairly loosely as do most patients.
To test for a tremor you hold your hands out in front of you in a relaxed manner and see if after about half a minute there is a fine tremor in your fingers. SHBG is Sex Hormone Binding Globumin, it makes up our sex hormones and tends to increase with thyroid hormone activity, so it is an approximate marker.
I assume you are not losing weight as this is something you should inform your doctor of.
Have you had your calcium level tested? Calcium can have these sort of effects. By the way, ignore your magnesium result since magensium blood tests are of no use, magnesium is an 'intracellular cation' which means it is free cellular levels that matter and there is no correlation with blood levels. I would try supplementing with magnesium citrate as it may help muscle spasms, but get your calcium level checked if it hasn't been.
According to your blood test results your vitamin D levels are low which might affect the way your body functions and might affect how your absorb calcium.
Your B12 doesn't look particularly high, it's best at the top of the range but there's someting odd about the range you've given 'reduce dose if greater than 175' but the top of the range given is 250? Maybe it's just late and my brain is fried??
I'm on a high replacement dose with low TSH and I have a vigorous exercise programme so I'm thinking it's likely your low Vitamin D and possibly B vitamins (depending on actual range) that are causing problems. A good B complex for a few months might help. Find one with B12 in the form of methylcobalamin rather than cyanocobalamin.
YOur FT3 and FT4 are in range. I feel unwell if FT4 goes over range but as yours is ok I would try lifting your vitamin D3 and B's before adjusting levothyroxine. If you supplement vitamin D, you could take magnesium and K2-MK7 which are the co-factors.
I overlooked that you had papillary thyroid cancer. Whilst it makes sense to try reducing your levothyroxine this should be in consultation with your oncologist and endocrine doctors. TSH is usually kept suppressed after treatment of thyroid cancer in order to prevent a cancer reoccurring. However, things have moved on in recent years and for many cancers the degree of TSH suppression can be reduced and doesn’t need to go on indefinitely. So, you should talk to your specialists to see to what extent you need your TSH suppressed. This is highly specialised and specific to your cancer, so we can’t give advice on this factor.
A second point. The parathyroid glands are located adjacent to the thyroid (hence their name), there are four of them and they control mineral balance, especially calcium. It is possible that these glands were affected by the cancer, or the surgeon removed one or more of them. Since parathyroid hormone (PTH) controls calcium levels your doctors should have monitored your PTH and calcium levels. I would double check that this has been done and in any event get your calcium level checked again if it hasn’t been checked recently.
To all "post-ees", a big thank you for your insights and observations so far. The great thing you've all done is highlight how complex this illness is and how important it is to educate and interpret bio changes & results to new Thyca patient like me. So Gillian and Jim keep debating and correcting for the greater good. It's helpful which ever way you look at things.
I've just completed my 9mth body scan with low dose of radio iodine. I'm awaiting results in next 3 weeks. I've not taken any supps to influence my bio as I wanted to establish how my body is reacting to create a bench mark. As the one thing I would advocate (in case others don't get done) is get a full blood test with TSH, minerals vitamins done before any thyroid surgery so that easy comparison can be made post thyroid surgery ( and ongoing) as I really struggle to understand my own body bio before and after. I need to review all your comments and will probably ask more questions in due course.
One thing that is on my mind is the next appt i have is with Oncologist to reveal results. I ask myself why and Endo is not part of the conversation or why a follow up appt. has not been made. This aside I wish to be ready to challenge back on all these results to address by physical and bio issues...I will call on this forum to assist me in asking the right questions going forward.
Next week I'm having an ultra sound via Rheumatology to see what's happening with my arms and wrists and I'm still waiting for an appointment with neurology with a view to organise Nerve Conduction test again if others have issues with muscles, soft tissue or nerve issues I really welcome to hear there experiences as I probably need to organise neurology testing privately by self funding to expedite matters.
Just to agree with jimh111 that it would be helpful for you to have a parathyroid assessment (even if self-funded) as it's not unusual for this to surface for various reasons after the surgery that you've had.
An Endo would normally be part of the multi-disciplinary team but would only be referred to if needed as Endo's are not usually specialists in thyroid or cancer care. They are usually diabetes specialists unless you're in a center that treats a lot of thyroid cancer.
I'll be interested to find out what the result is re. muscle wasting and what advice you're given and whether it's parathyroid related.
Yes I will be pushing for a new set of blood tests and also metabolic testing if such thing exists, plus hormone assessments. So I may have a full 360 perspective from TSH, Vitamins, minerals, hormones and metabolic. Jeez I'm probably over killing things but no idea what else to do.
Btw are there physical support group meets for Thyca patients here in UK especially?
Muscle wasting is a text book Graves' and I struggled badly before and after thyroid removal. I still exercise daily but have badly marked arms and stomach, similar to someone that might have been carrying a huge amount of weight and lost it, I haven't and am still a size 10/12. I do light weights but it seems to make little to no difference.
Before getting diagnosed I found my self in a very strange situation of when cleaning the fridge, I was kneeling on the floor and could not get up, really could not get up until someone gave me a helping hand. I work in a job that requires physical fitness. Since then I have never fully recovered but have improved. Copper, magnesium help with muscle restoration.
In hyperthyroidism, the excess thyroid hormone literally eats up muscles, and it’s referred to as muscle wasting. Muscle protein breakdown and decreased muscle mass is measurable in Graves’ hyperthyroid patients. It is most apparent in the upper arms and thighs, and muscle testing will show decreased muscle strength. Abnormal measurements of muscle protein breakdown normalized after treatment brought thyroid levels down.
Hi I had my thyroid removed almost 3 years ago was kept sedated for 4 days woke up with tracheotomy and loss of muscle strength on entire right side of body. I have tried therapy and exercise since week after waking up . I have loss leg arm and hip strength. No one can seem to find an answer after almost 3 years. I have muscle spasms that cause my legs to lock up have fallen several times because of this. Has caused additional injuries due to fall. Torn cartilage in right hip and now fall has caused broken leg. I dont know where to turn for answers. doctors last notes said could be caused from previous neurologic issues address surgically or for lack of another diagnose ALS. I woke up from thyroidectomy with loss of muscle strength. How can they use Possibly ALS 30 months later. I WANT TO KNOW WHAT HAPPENED TO ME AND IF ANYONE ELSE HAS ANY HOPE THEY CAN OFFER AD TO A RECOVERY
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