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Issues after Total Thyroidectomy
Hello!
I had a Total Thyroidectomy 2yrs, 6 mths, 2 weeks, and 15 hours ago! (but who's counting). My Parathyroids were damaged(left in my neck) never to produce the hormone I need. What I'm left with since the surgery, Thyroid meds and calcium numbers have never been on the same page.
Total thyroidectomy= perminenet Hypoparathyroidism= perminent Hypocalcemia, which has led to chronic and constant muscle spasms (tetny is the name). Besides the constant numbness and tingling (due to low calcium). I have severe muscle and joint ache and pain in my hips knees and feet ONLY! Why??? do you know?
I have taken 4000mgs a day of calcium( as the dr told me to, for 1 mth) because my body dosen't absorb enough! the next month I dropped it to 2000mg a day!!! Now I have backed it down to 1000mgs a day.
To much Calcium is toxic to your system ! to many things were going on! I am taking Citracal with Vit D (absorbes better into the body. Numbness and tingling is brutal! fatigue! I never thought was possible!
I'm on my 5th Endo dr since the surgery! I am fit,not fat, in shape,diet, (have low blood pressure, low cholestrol) as active as I can be since the surgery. I've been to rheumatology(no muscle diseases) It's been a long two years!
This scares me with the joints! It's got to be related to the calcium (Drs think more is better) I've been on this roller coaster ride for two years.
From the Dr who killed my parathyroids to all the Drs I've had to see since the surgery, I'm a bit soured on Drs, but I have to keep searching for answers! I was fine before surgery! I've had Hashimoto for 13 years prior! and now a total Thyroidectomy! and all hell breaks loose!
Any suggestios with the calcium?????
Suzanne
I had a Total Thyroidectomy 2yrs, 6 mths, 2 weeks, and 15 hours ago! (but who's counting). My Parathyroids were damaged(left in my neck) never to produce the hormone I need. What I'm left with since the surgery, Thyroid meds and calcium numbers have never been on the same page.
Total thyroidectomy= perminenet Hypoparathyroidism= perminent Hypocalcemia, which has led to chronic and constant muscle spasms (tetny is the name). Besides the constant numbness and tingling (due to low calcium). I have severe muscle and joint ache and pain in my hips knees and feet ONLY! Why??? do you know?
I have taken 4000mgs a day of calcium( as the dr told me to, for 1 mth) because my body dosen't absorb enough! the next month I dropped it to 2000mg a day!!! Now I have backed it down to 1000mgs a day.
To much Calcium is toxic to your system ! to many things were going on! I am taking Citracal with Vit D (absorbes better into the body. Numbness and tingling is brutal! fatigue! I never thought was possible!
I'm on my 5th Endo dr since the surgery! I am fit,not fat, in shape,diet, (have low blood pressure, low cholestrol) as active as I can be since the surgery. I've been to rheumatology(no muscle diseases) It's been a long two years!
This scares me with the joints! It's got to be related to the calcium (Drs think more is better) I've been on this roller coaster ride for two years.
From the Dr who killed my parathyroids to all the Drs I've had to see since the surgery, I'm a bit soured on Drs, but I have to keep searching for answers! I was fine before surgery! I've had Hashimoto for 13 years prior! and now a total Thyroidectomy! and all hell breaks loose!
Any suggestios with the calcium?????
Suzanne
A related discussion, when does it end I want to get off!!!! was started.
A related discussion, chronic fatigue was started.
Hi,
I am Hypothyroid and was diaognosed when I was 29. I never had any problems until they removed my thyroid. I had a nodule that grew (over a 10 yr peroid), never bothered me, but it had to come out. It was all intertwined with the thyroid gland....so out it came!!! no cancer!
Had they not damaged my parathyroids for good(risk or not), I wouldn't be having all these problems due to the lack of calcium absorbtion........
Calcium affects so much in your body. Numbness and tingling is related to the lack of calcium absorbtion( It's called Hypocalcemia=low calcium). Muscles spasm and cramp to the point of not being able to move them very well.So I take everything, and think I'm all set, and I'm not!
Tried cytomel, not for me(like being on speed). They just recently upped my Vit D (why now and never before, fu***** Drs), 5 Endo Drs later.....and it's been 2yrs and 7months.
The muscle and jount pain is less severe than it was, so there is some relief. But it's not gone.
Good luck with the surgery! keep your thyroid gland as long as you can. Just watch for them to damage of take out your parathyroid glands by accident. And if they tell you they have done this a thousand times( don't believe them).
Reasearch your Dr(PLEASE)... my Dr had a wonderful rep. a lot of good that did me!!!!
Best of luck with the surgery! would like to hear how you made out.
Suzanne
I am Hypothyroid and was diaognosed when I was 29. I never had any problems until they removed my thyroid. I had a nodule that grew (over a 10 yr peroid), never bothered me, but it had to come out. It was all intertwined with the thyroid gland....so out it came!!! no cancer!
Had they not damaged my parathyroids for good(risk or not), I wouldn't be having all these problems due to the lack of calcium absorbtion........
Calcium affects so much in your body. Numbness and tingling is related to the lack of calcium absorbtion( It's called Hypocalcemia=low calcium). Muscles spasm and cramp to the point of not being able to move them very well.So I take everything, and think I'm all set, and I'm not!
Tried cytomel, not for me(like being on speed). They just recently upped my Vit D (why now and never before, fu***** Drs), 5 Endo Drs later.....and it's been 2yrs and 7months.
The muscle and jount pain is less severe than it was, so there is some relief. But it's not gone.
Good luck with the surgery! keep your thyroid gland as long as you can. Just watch for them to damage of take out your parathyroid glands by accident. And if they tell you they have done this a thousand times( don't believe them).
Reasearch your Dr(PLEASE)... my Dr had a wonderful rep. a lot of good that did me!!!!
Best of luck with the surgery! would like to hear how you made out.
Suzanne
Sounds like hypothyroid symptoms: tingling,joint,muscle pain, foggy headed and heart stopping fatigue. Awful. I had it all till my Dr placed me on cytomel (T3) and the symptoms went away.Now years later I'm staring down the barrel of a partial Thyroidectomy 11/19/10 for a suspicious and likely toxic nodule, YIKES!
HI Sophia,
Just please space out your Vit D(calcitrol I hope) with Calcium pills(crush up calcium put in pudding or yogurt ,Yoplay tastes like pudding).Take together (vit D+calcium). I learned the hard way! and still am! ....Don't take it all at once! Thryoid in am(wake up).....wait....... then calcuim/d......so lunch12 ......4....then 6 to 8....just try it.....(times don't have to be exact). Body has a chance to absorb better.....Buy some laxatives in case you become constipated from the calcium, and buy some colace or ducolax(stool softeners)...calcium makes your stool harder (feels like rocks comming out of your butt). Put them in your bathroom(you will use them) not sure when!!!
Tums for attacks of numbness and tingling....
Heart rate side effects???? I'm on 150mgs at this time...was on 175(heart raced etc...) so they backed it down to 150. You are only on 100, seems low? but what do I know. I was on 88 before surgery and it took them 2 yrs and 7 months to get to 150.
The fatigue is the worst! I'm always tired.....You feel like your dragging your body around...It never goes away.It's with you constantly! Eventually when you actually have a less tired feeling(won't be often), that will be a good day. Don't change your bed, or pillows, or drink warm milk just to get a better nights sleep.
I'm sorry to be such a downer!!! You never get used to it(being tired), it just becomes part of your day. Soon enough you will learn to see what part of the day you feel you have a tiny bit of energy, before you crash and burn. It took me so long, and I'm still not used to it. I never knew anyone could feel this tired!!! Take A f******* thyroid gland out of your body, and boy does your life change!!!!
And the Drs.......give it more time!!!! that's all you will hear!..... and we are supposed to get through the fatigue and continue on with or day. when it doesn't go away!!!! blows your mind!!!! And you walk around in a fog.....all you want to do is sleep....and you go to bed and hope that tomorrow will be a better day........wake up! and do it again! and it never goes away...you just get used to it! and no day is the same......so hang on tight because the roller coaster ride has just begun.
I've talked to a lot of people after a TT(any age for any reason), on line and at hospitals etc... they say you/they are never the same....everything is just different....I'm amazed at how much the Thyroid gland does for your body, and the disease itself...
You have one parathyroid gland left, (blood test) check to see if it's producing the hormone your body needs, and keed checking with the calcium levels.
Gotta go! off to the gym tonight with no gas at all! but I'm going! Will friend you later through here then I'd like to keep in touch with you to see how you are doing. I will give you my email.
Your so new after surgery, I'm 2 years and 7 months old......and I've been through (hell)a lot (everyone has who comes to thyroid chat room).If my hell can help you avoid going through it. It's been (horrrible)It wasn't routine after the surgery....so please keep in touch(via email)...
I know how you feel!!! as we all do!!! when does it get better???? we just get used to it!
As long as you are alive! give it hell!
Suzanne
Just please space out your Vit D(calcitrol I hope) with Calcium pills(crush up calcium put in pudding or yogurt ,Yoplay tastes like pudding).Take together (vit D+calcium). I learned the hard way! and still am! ....Don't take it all at once! Thryoid in am(wake up).....wait....... then calcuim/d......so lunch12 ......4....then 6 to 8....just try it.....(times don't have to be exact). Body has a chance to absorb better.....Buy some laxatives in case you become constipated from the calcium, and buy some colace or ducolax(stool softeners)...calcium makes your stool harder (feels like rocks comming out of your butt). Put them in your bathroom(you will use them) not sure when!!!
Tums for attacks of numbness and tingling....
Heart rate side effects???? I'm on 150mgs at this time...was on 175(heart raced etc...) so they backed it down to 150. You are only on 100, seems low? but what do I know. I was on 88 before surgery and it took them 2 yrs and 7 months to get to 150.
The fatigue is the worst! I'm always tired.....You feel like your dragging your body around...It never goes away.It's with you constantly! Eventually when you actually have a less tired feeling(won't be often), that will be a good day. Don't change your bed, or pillows, or drink warm milk just to get a better nights sleep.
I'm sorry to be such a downer!!! You never get used to it(being tired), it just becomes part of your day. Soon enough you will learn to see what part of the day you feel you have a tiny bit of energy, before you crash and burn. It took me so long, and I'm still not used to it. I never knew anyone could feel this tired!!! Take A f******* thyroid gland out of your body, and boy does your life change!!!!
And the Drs.......give it more time!!!! that's all you will hear!..... and we are supposed to get through the fatigue and continue on with or day. when it doesn't go away!!!! blows your mind!!!! And you walk around in a fog.....all you want to do is sleep....and you go to bed and hope that tomorrow will be a better day........wake up! and do it again! and it never goes away...you just get used to it! and no day is the same......so hang on tight because the roller coaster ride has just begun.
I've talked to a lot of people after a TT(any age for any reason), on line and at hospitals etc... they say you/they are never the same....everything is just different....I'm amazed at how much the Thyroid gland does for your body, and the disease itself...
You have one parathyroid gland left, (blood test) check to see if it's producing the hormone your body needs, and keed checking with the calcium levels.
Gotta go! off to the gym tonight with no gas at all! but I'm going! Will friend you later through here then I'd like to keep in touch with you to see how you are doing. I will give you my email.
Your so new after surgery, I'm 2 years and 7 months old......and I've been through (hell)a lot (everyone has who comes to thyroid chat room).If my hell can help you avoid going through it. It's been (horrrible)It wasn't routine after the surgery....so please keep in touch(via email)...
I know how you feel!!! as we all do!!! when does it get better???? we just get used to it!
As long as you are alive! give it hell!
Suzanne
Suzanne, just got to checking here...thank you SO much. Any information is so much help. You are so right about the calcium. After my surgery 12 weeks ago, they checked my calcium levels and they were fine, but I know that will change. He did remove my papathy glands...he left one in tact...so I WILL have to heed your advice. I am off to buy tums. It is really that I still have trouble swallowing pills and just avoid them...and I know it is not good. I am running on empty here. I am only inched up to 100 mcg levox. and I need to be at 125-150. I am on a slow climb because of the heart rate side effects...but I am so tired of being tired. I have no energy and have to force myself up and out. I work remote online as a professor and can do my work from my bedside if I have to...but even using my brain at this point is exhausting. I will try and work the "friend" thing...I welcome any words or links that offer advice and comfort :)...what dose of thyroid med are you on?
Stay well and keep up the fight.
Sophia
Stay well and keep up the fight.
Sophia
Have a great website you should look at but can't promote it on their webpage. If you can friend me(I think that's what you call it, but I don't know how to do it yet). Then i can tell you what it is.
Suzanne
Suzanne
Hi Sophia,
Don't not take your calcium (do what you want) but it affects your muscles and the coordination(they go into slow motion and don't work well). Be careful! it can be really scary, although short term. Keep Tumx EX with you. Numbness and tingling, eat tums , it absorbes into your system quicker to allieviate the tinglys.
Did your Parathyroids get damaged(left in your neck but useless) or did they get taken out by accident?
It's been two years and 7 months of upping my thyroid meds (it was never enough), and the calcium(due to para damage) has never run on the high side.Neither one has ever been on the same page!
Oh the roller coaster ride we (all)are on! You sound like you are already used to the ride
but boy does it s***!
It's tough when it affects your body! There really is no answer for any of us, just what worked for someone else, and hope to make our daily lives bearable.
It's hard to conduct your life when your body is dragging. It affects every part of your day! we all seem to get through it somehow.
I'm glad that something I mentioned you found valuable, that's what we are all here for!
Suzanne
Don't not take your calcium (do what you want) but it affects your muscles and the coordination(they go into slow motion and don't work well). Be careful! it can be really scary, although short term. Keep Tumx EX with you. Numbness and tingling, eat tums , it absorbes into your system quicker to allieviate the tinglys.
Did your Parathyroids get damaged(left in your neck but useless) or did they get taken out by accident?
It's been two years and 7 months of upping my thyroid meds (it was never enough), and the calcium(due to para damage) has never run on the high side.Neither one has ever been on the same page!
Oh the roller coaster ride we (all)are on! You sound like you are already used to the ride
but boy does it s***!
It's tough when it affects your body! There really is no answer for any of us, just what worked for someone else, and hope to make our daily lives bearable.
It's hard to conduct your life when your body is dragging. It affects every part of your day! we all seem to get through it somehow.
I'm glad that something I mentioned you found valuable, that's what we are all here for!
Suzanne
Hi! I read your frustration and as I enter this forum each time, I realize more and more that this is a monster that anyone can get and battlin it takes every bit of strength we have. My story? Short ...I had Hashimo and thyroiditis bouts for 3 years...excruciating pain, fatigue, muscle pain..you name it...everything everyone describes...would come and go..but never leave...STRESS ...STRESS..that was the factor that kicked it up always...it got to where I couldn't get past the bouts...I'd go from hypo to hyper...a roller coaster that I can't even believe I didn't jump off a bridge :) ....the nodules kept getting bigger so I took the plunge and got the TT done July 9th of this year...I learned through my battle that self-education is key...this site is a great resource...what is so common here...is I see the same patterns...autoimmune deficiencies..calcium deficiencies...it is not only the battle with the thyoird..but all the other side manifestations from having a faulty immune system...it just seems to want to attack anything and everything! Everyone tells me the same...GIVE IT MORE TIME..and that is the mantra I use when I don't have the energy to get out of bed..or I still have trouble swallowing without feeling a softball in my throat...my voice took almost 7 weeks to even come back to somewhat normal...I was one of the lucky ones who lost it totally after surgery...
I am glad to read you are on a stable path....I also found it valuable you mention the calcium...they tested my calcium level post surgery and it was OK...but I am BAD at taking my calcium...and I am sure I am D deficient...so that might explain the extreme body pain...How are you doing on the thyroid meds??? Those can be just as difficult to manage as the thyroid issues itself!
What I read here in many posts is that it can take several years to get the body on track...with only a couple months post surgery, under my belt..I can't even imagine!!! But then, after living with a swollen thyroid for 3 years...I tell myself, it can't be any worst!! It is a test of patience and endurance of the physical and human spirit...lots of good support, rest, self-education....and patience with your body as it is trying to get itself adjusted....
Hang in there...you sound like you are doing great and have the spirit to fight the good fight...
Sophia
I am glad to read you are on a stable path....I also found it valuable you mention the calcium...they tested my calcium level post surgery and it was OK...but I am BAD at taking my calcium...and I am sure I am D deficient...so that might explain the extreme body pain...How are you doing on the thyroid meds??? Those can be just as difficult to manage as the thyroid issues itself!
What I read here in many posts is that it can take several years to get the body on track...with only a couple months post surgery, under my belt..I can't even imagine!!! But then, after living with a swollen thyroid for 3 years...I tell myself, it can't be any worst!! It is a test of patience and endurance of the physical and human spirit...lots of good support, rest, self-education....and patience with your body as it is trying to get itself adjusted....
Hang in there...you sound like you are doing great and have the spirit to fight the good fight...
Sophia
Hi!
Everything has been fine! (according to the blood work) I"ve had it checked every three months since the TT. That's never been the problem! it's was always the calcium absorbtion. You would think that we would increase the vit D (nope) It was always take more calcium. Hypocalcemia is the worst! ******** rocks out of your *** (excuse my language) is not pleasant! And they tell me to take more calcium!!!!!! and they went to medical school!
It's been a long two years 6 months and 3 weeks 8 hrs since moths TT. I've done what I was told! I gave it more time, and more time,and switched Drs 5 times , just to feel better, to find an answer.
Thanks for your suggestions, but I've been that route, and I do go back just to check again from time to time. I had taken Klonapin for the muscle spasms(not a big extra pill person).
And thank you again for your response! you never know!
Suzanne
P.S. how long ago was your TT? and how long did it take you to get your Thyroid meds and calcium straight?
Everything has been fine! (according to the blood work) I"ve had it checked every three months since the TT. That's never been the problem! it's was always the calcium absorbtion. You would think that we would increase the vit D (nope) It was always take more calcium. Hypocalcemia is the worst! ******** rocks out of your *** (excuse my language) is not pleasant! And they tell me to take more calcium!!!!!! and they went to medical school!
It's been a long two years 6 months and 3 weeks 8 hrs since moths TT. I've done what I was told! I gave it more time, and more time,and switched Drs 5 times , just to feel better, to find an answer.
Thanks for your suggestions, but I've been that route, and I do go back just to check again from time to time. I had taken Klonapin for the muscle spasms(not a big extra pill person).
And thank you again for your response! you never know!
Suzanne
P.S. how long ago was your TT? and how long did it take you to get your Thyroid meds and calcium straight?
After my Total Thyroidectomy they checked my B-12 and it was severly low. It made the world of difference when I started the shots once a month. I was also low in Vitamin D and take 1000 IU a day.
Have they tried you on Zanaflex for the muscle spasms?
Have they tried you on Zanaflex for the muscle spasms?
Thanks for responding!
I have been on calcitrol this whole time (0.5mcg twice a day) plus the calcium (I take citracal plus D3.......so I'm getting prescribed dose plus what's in the citracal.
Have you heard of the calcium causing severe joint and muscle pain because it runs low? i don't have bone issues!
Who's PTH hormone are they supposed to inject? mine are dead! I was told it couldn't be done (by my surgeon). I was told that they take (live)PTH hormone from your own body and inject it elsewhere.But they have to be alive.
I'll keep digging! anything for the chance to feel better than i do now! I was fine before surgery! that's the hardest part!
Suzanne
I have been on calcitrol this whole time (0.5mcg twice a day) plus the calcium (I take citracal plus D3.......so I'm getting prescribed dose plus what's in the citracal.
Have you heard of the calcium causing severe joint and muscle pain because it runs low? i don't have bone issues!
Who's PTH hormone are they supposed to inject? mine are dead! I was told it couldn't be done (by my surgeon). I was told that they take (live)PTH hormone from your own body and inject it elsewhere.But they have to be alive.
I'll keep digging! anything for the chance to feel better than i do now! I was fine before surgery! that's the hardest part!
Suzanne
MEDICAL PROFESSIONAL
Would tlk to your doctors about a low dose of calcitriol (rocaltrol) which is a prescription form of 1,25-(OH)2-Vit D (ie, activated vitamin D) that helps absorb calcium and stabilize calcium levels - in turn, patients need less over-the-counter calcium. Magnesium supplementation sometimes helps as well. This is a roller-coaster for a few years, but usually settles out.
I believe that there may be a trial using injectable PTH - you could see if it's available in your area.
I believe that there may be a trial using injectable PTH - you could see if it's available in your area.
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