I am 13 days post-opp. I had Hoshimotos, with 2 large nodgules. I had a complete Thyroidectomy, during surgery the doctor was separtating the parathyroid grands from the back of the Thyroid and discovered a marble size tumor on one of the four gland. The tumor caused that gland to be hypercalcium. Now that the tumor and gland was removed the other three glands are dorment, leaving me calcium deficant. I am taking 4500mg of calcium a day and my calcium is still low. I am taking Synthroid 125mg daily the same dose prior to my Thyroidectomy. I get out of breathe and dizzy now and then, I also get cramps in my feet and legs. So now the doctor added a presciption of Calcitriol 0.25mcg to help promote PTH and regulate my calcium.
Is anyone else having the low calcium problem? And/or a lump of edema trapped in the surgical area?
I too had a TT and one parathyroid gland removed - due to a tumor. I also had/have the same after-surgery result and am taking the same meds you are.
Your surgery is very recent. Hopefully, your remaining parathyroids will kick back in and do their job. Mine have but it has been a very slow process that is still going on. I’ve been able to take much less calcium and vit d as time goes by. I also take magnesium sometimes to help with leg cramps. Perhaps you might find that useful. However, I wouldn’t take anything without the okay from your dr.
Let’s hope those glands of yours get going. “Hey, you guys, get going!!” (I’m crazy today. Must be the October snowstorm happening outside my window.)
I heard that people used to die from this in the old days. The docs would cut the thyroid out and take the parathyroid with it, not realizing what it would do to people. They couldn't get the calcium they needed and they eventually died. It's serious stuff.
Thypatient is correct that this may take some time for you to get that calcium under control. Parathyroid disease is very hard to be diagnosed and when they were in there with the TT and found the tumor - well I assume no one really knew what all was going on until they were in there.
I think your on the right track. Are they checking your other parathyroids? It is rare that others were a prblem for you. Usually it is just one that is the culpruit and it sounds like they got it.
Thank Goodness we're are not living in the 'old days' with this kind of issue. Today, even if the parathyroids are removed or do not start working again, calcium levels can be maintained with supplements and monitoring of the blood.
Here's a website with a lot of useful information and a forum with folks who have this specific issue:
Thank you for your responce. I was told that the Parathyriod tumor is rare and very hard to diagnose. The tumor discovery was a surprise while he was doing my TT surgery. He told me that I had all 16 synthoms, and that others have reported that they felt so much better overall after the tumor was removed. However, this low-calcium problem while waiting for the three parathyroid glands to function has not been easy.
How long have you been waiting for your glands to function again after surgery? Was the tumor a surprise to you as well?
You mentioned Magnesium? How much Mag do you take? I do not recall ever seeing an order for my Magnesium level to be tested on my labs. I see my Endoconoligist this Friday and I will mention it to her. Thanks for the tip!
Scary is right! I can't even begin to imagine what people went through back in the days... I had a paternal Aunt that had Hashimoto's Thyroiditis too, over 50 years ago when she was in her late 20's her neck blew up like a ballon, she had an emergency TT. She passed away 17 years ago from complication of Osteoporosis. From the severe Osteoporosis her spine was so slumped over, it caused pressure on her lungs and heart and induced a heart attack. Now that I have an understanding of the complications of Parathyroidism by damaging or removal of the gland(s) during a TT, it is most likely what happened to my poor Aunt.
“How much Mag do you take?” ~ I take about 250mg, as needed.
“Was the tumor a surprise to you as well?” ~ No, that was my original diagnosis. My surprise came with being told just before surgery that my thyroid was also bad and had to come out too. I couldn’t believe it!
“How long have you been waiting for your glands to function again after surgery?” ~ It’s been over two years since surgery. My remaining parathyroid glands do work but their activity has been sluggish. However, I believe this is partially due to the fact that the thyroid removal part of my surgery became complicated – it had grown so large and was all over the place. The surgeon said he had to pull back several muscles (whatever that means – yikes!) in order to get it all out. My throat was very tender for a long, long time after.
I can also add that since this surgery, I had another one last year to remove my gallbladder due to a tumor on the inside wall. So I think having another health issue interfered with my full recovery from this one (not sure if that makes sense (?)).
My last blood work showed my calcium level just below normal and my PTH just above normal. I currently have an appt to get it all checked again soon. Lately though, I’ve felt fewer symptoms and have needed less calcium/vit d, so I think things should be okay.
I believe I will always have to take more than the average amount of calcium. But at this point, that’s become an acceptable compromise.
I’ve said way-too-much (…and used the word ‘I’ way-to-much) but my point is that I think my situation is not an average one. Hopefully, yours will be an average one in that your glands will come back to full function soon.
What you shared, about your Aunt, is sad. We can be grateful for modern technology - and for modern knowledge!
i had a complete thyroidectomy as well as a complete parathyroidectomy about 3 years ago. meaning i dont have anything left. at one point i was taking 27 500mg oscals a day. thats 13500mg of calcium a day 9 pills 3 times a day. and i was still having problems keeping my levels right. luckily after i'd say a few months, i started being able to control it a little bit better and after about 2 years the drs finally got my levothyroxine right. and i started having to take less and less calcium. a good trick is to take vitamin d with the calcium. also, and this is the most difficult part, try to avoid overly stressful situations. ive noticed that it definitely has an affect on your body. the less stressed you get, the healthier all around you will feel. it doesnt drain your body so much which keeps your levels managable. hope that helped. hang in there, it gets easier i promise
honestly i think it all depends. everyone has 4 parathyroides. if you have 1 removed, your calcium levels will be low for a bit until the other 3 parathyroides start producing enough calcium to compensate. but if you're like me, i had all 4 removed, so i will be on a large amount of calcium pills for the rest of my life. it also depends on your overall health. each person is different so its hard to give you a direct answer.
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