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Post-surgical hypoparathyroidism, anyone?

Does anyone else suffer from long-term LOW CALCIUM due to what is clinically known as "post-surgical hypoparathyroidism"--in other words, they removed your thyroid, and now for whatever reason, your parathyroid glands are not functioning properly? I'm interested in your course of treatment, how much calcium and vitamin D you take, and what works for you. I've already met one person through this forum, and our email conversations have been so helpful. This condition is a supposedly "rare" outcome of a TT, and more research is needed. I would love to know if anyone has had success in kick-starting their parathyroids after longer periods of dormancy. If there is any response, we could start a web forum elsewhere to share our experiences.

My stats: TT for multinodular goiter in July '06, current calcium level 8.7, and currently taking 2,500 mg of elemental calcium daily, with .5 mcg Calcitriol.  
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Avatar universal
i had my thyroid removed in jan 2013  i developed hypocalcemia three days later  i am on 9000 (15 tabs) calcium a day plus vitamin d (calcitriol)and have been hospitalised three times for a calcium drip during the past two months :) my calcium finally hit the two mark today !!! i haven't been over two since its all happened and my parathyroids are RIP ..no surgical damage just sustained shock and didn't make a comeback  , thankfully  i am in good hands with a great endo and a fantastic gp on the case !! now to maintain it and learn to live with as few disruptions as possible :)
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Avatar universal
I had My thyroid removed almost 3 yrs ago and have been suffering with these aweful episodes of palpitations and tingling in face and fingertips. i went to 3 different endo dr.'s and 5 GP Dr's and finally got a Dr. that checked my parathyroid function and guess what....no function!! All the other DR's woould do is check my calcium levels and not the parathyroid function. I had to stop with the tums because I knew it was my calcium just so my calcium levels would be low for blood work so the Dr' would check parathyroid function! It's very very frustrating!!!
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150794 tn?1242048511
I really don't know why there is so much confusion here.  Clearly a person with low calcium after a thyroidectomy is suffering from hypoparathyroidism.  Your doctor can check your parathyroid hormone level.....they just don't want to.  If you are having to take more than 1000 or so mg. a day and add magnesium and/or rocalcitrol to your daily pills, you have a parathyroid problem...most likely. Ok,, with that in mind, you need to be educated on the disease.  I have had it for nearly 10 years and there is so much you need to know.  Visit the web site of the hypoparathyroidism association.  Wear a medical ID bracelet!!!! Do not put hypoparathyroid on it as some will look at this and think thyroid instead of parathyroid.  Put "hypocalcemia" on the bracelet!! Low calcium levels can be very dangerous and even though you may click along o.k. now, you may have a minor stomach virus or something that causes you  not to be able to orally take your meds for a while and YOU WILL BECOME VERY SICK VERY FAST!!!  If your Dr. doesn't follow you very closely..... GET A NEW DR!!!  Try an endocrinologist if you have one in your area.  They will back this info. up real quick.  I am a physician myself, but I do not try to treat myself.  When your calcium gets low, you will not have a clear head about you... and MAN you are messed up when it gets too  high also. Don't try to always go by how you feel, but in time you will get better at picking up symptoms for yourself.  Please educate yourself on your disease and get your parathyroid levels checked to begin with.  Then you can go from there.   THere is a lot of info out there.  Lots of luck to all of you suffering with me.  This disease *****!!!
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219241 tn?1413537765
I posted to you way back in January this year, and I can tell you nothing has got any better in May! I was told to drop down to two 600mgs of calcium a day as my levels were 'fine' BUT started to get the old symptoms of tingles and heart the shakes all over again. So now backup to 4 x 600mgs a day...sigh...The doctor has no idea why I amso low on calcium, my sneaking suspicion is my parathyroids are shot to all heck! She has now ordered a Vit D test and will discuss that with me next week.. I live in Australia so the sun here shines pretty much all the time, even in winter we get a fair bit of it. So all I can think of is my parathyroids are not so healthy.
Cheers.
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Avatar universal
On April10, 2000 I had Thyroid Cancer surgery, and though my parathyroids were reimplanted, they never took off.  I like many of you, went into Tetany, was in the ICU for a week and was truly frightened about going into Tetany again.  For a couple of years I was placed on Rocaltrol which can affect your kidneys and which really wasn't the answer for me.  After searching, I found a wonderful specialist in Wisconsin (Dr. Robert Blank) who sees mostly parathyroid patients.  He put me on Drisdol, and knock on wood, I feel normal.  Drisdol (vitamin D) seems to stay in your system longer and doesn't have the roller coaster affect that patients seem to have with Rocaltrol.  I too take Citracal.  I also discovered that sunshine and in the winter a short time in a sun booth seem to trigger the vitamin D to work.  Hang in there... you will feel better.  So if it is rainy and cloudy for a long period of time, try the sunbooth treatment.  Mama-Cin
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327487 tn?1206474681
Well I still have not heard from the doctor.  I will call again today I suppose.  Thanks for telling me about the calcium blood tests, I am definately going to ask about it to see if in fact it was performed or not.  Hopefully I will actually be able to talk to the doc today but who knows.  Thanks again :)
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Avatar universal
Hope all is well. You should ask you doctor if a calcium blood test was done, and what the results were. Store that knowledge away in case you have future tests--you will need a basis for comparison. If they did the test, they should have the results in your file, and it's your right to know (if they didn't do the test, you should request it, given your symptoms and recent surgery).  Normal calcium level is between 8.9 and 9.5 or so. Anything lower than 8 is critical (they wouldn't let me leave the hospital until my level was at least 8.4).  
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Avatar universal
I had my TT on Feb. 19 and have a very similar case to devusha's. My lips and legs were "tingly" and still are. My blood level showed:
Calcium 7.2
PTH-Intact <3
My surgeon was concerned that even with my high consumption of calcium I still get cramps and have some weired symptoms. He prescribed me Calcitrol that supose to help better than Tumbs alone. I also take 125 of Synthroid. I had my blood drawn on Monday and should hear from them soon if there is any improvement. On Monday I had a visit with my new endo who looked at the pathology results from TT and noticed that one of my parathyroid was removed and he said o sh.... I guess having your parathyroid injured can happen but it shouldn't happan. I am just glad that I have 3 of them left and that my surgery is over. I hope that all of you feel better and I am very grateful to have a place to come and talk to understanding and compassionat people who went through same ordeal.
Blessings to all Krys48
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327487 tn?1206474681
I have no idea what my calicum levels were when I was at the hospital, nobody told me anything about calcium levels.  Actually, I didn't get told much of anything just that my follow up was in one week.  I am not having any chest pain but the tingling and breathing problems are still very much present.  I still have not heard back from the doctor either.  If I do not hear back from him within the next 2 hours I will call again.  I'll take your advice on the tums, at this point I will do anything to get rid of the tingling (its really annoying!)  Thanks again :)
Helpful - 0
Avatar universal
It won't hurt to chew a few Tums until the doc calls back. See if you have any relief from the tingling.  What were your calcium levels when you left the hospital? The fact that the tingling is only on one side worries me, because my low-calcium symptoms were on both sides.  Do you feel pressure in your chest? I had a bout of tetany after the TT, and it started with a feeling like something incredibly heavy (like an elephant's foot!) was pressing down on my chest.  It did make breathing difficult.  Your doctor is derelict in not calling you back ASAP; if the symptoms worsen, get to an ER or urgent care.  
Helpful - 0
327487 tn?1206474681
I tried to call the doc yesterday and ended up leaving a message.  I have not heard back from him yet.  I also am having problems with being short on breath and being extremely tired.  I am 21 and in the military so I am also in shape.  This is causing alot of frustration because I can be just sitting or talking to someone and have to pause and take some deep breaths to catch some air.  Until I hear back from the doc I am will be sitting heat with a tingling arm and the short breath...This is driving me nuts!  Thanks for the advice, now lets hope the doc actually calls back.
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327487 tn?1206474681
I tried to call the doc yesterday and ended up leaving a message.  I have not heard back from him yet.  I also am having problems with being short on breath and being extremely tired.  I am 21 and in the military so I am also in shape.  This is causing alot of frustration because I can be just sitting or talking to someone and have to pause and take some deep breaths to catch some air.  Until I hear back from the doc I am will be sitting heat with a tingling arm and the short breath...This is driving me nuts!  Thanks for the advice, no lets hope the doc actually calls back.
Helpful - 0
Avatar universal
Hi All,

I have a different screen name now because I forgot my password once and registered under Hazelhurst, but I was devushka previously. Since I posted in January I have been able to decrease the calcium I take, and cut out the calcitriol altogether, with no bad effects. There is hope!  I take 1000 IU of vit. D daily, along with 500mg calcium four times daily, plus one multivitamin that contains some calcium. Don't listen to your doctors if they tell you your parathyroids are probably "dead" after six months of low activity; there are still things you can try, starting with the gradual decreasing of the amount of calcium you take every day (along with frequent calcium tests).  
Helpful - 0
Avatar universal
Please don't get me wrong.  I was not at all responding or rebutting your post.  In fact, I found it helpful.  I was only that a_rodriguez_04 is so recently out of surgery that her dr needs to be aware of everything she's doing.  Plus, parathyroids that don't get enough calcium are a problem, but it's also a problem when they get too much.  So, again, the dr should be aware if she's taking in calcium.

Hope your daughter is well.
Helpful - 0
400667 tn?1203744543
You are right, She should by all means should be discussing this with her Dr. My post was for information only. My appology if took wrong. I personally would never take anything without consulting with my Dr first.
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Avatar universal
I would not take calcium until you call the dr and ask him if you should take that, or anything else.  Let him decide, especially since you have a scheduled appt. and are in the middle of something he's looking into.  Does the dr know you're having tingling only on your left side?  If not, I would let him know that.

Helpful - 0
400667 tn?1203744543
My daughter had TT on Feb 15th 2008. The lowest her calcium level got was 8.4 the same evening of her surgery day. Her levels are staying around 9.3. She takes synthroid once a day. I do recall someone saying something about magnesium helping with cramps and or muscle spasm. See below what I found regarding magnesium.

Who may need extra magnesium?
Magnesium supplementation may be indicated when a specific health problem or condition causes an excessive loss of magnesium or limits magnesium absorption [2,7,9-11].

Some medicines may result in magnesium deficiency, including certain diuretics, antibiotics, and medications used to treat cancer (anti-neoplastic medication) [12,14,19]. Examples of these medications are:

Diuretics: Lasix, Bumex, Edecrin, and hydrochlorothiazide
Antibiotics: Gentamicin, and Amphotericin
Anti-neoplastic medication: Cisplatin
Individuals with poorly-controlled diabetes may benefit from magnesium supplements because of increased magnesium loss in urine associated with hyperglycemia [21].
Magnesium supplementation may be indicated for persons with alcoholism. Low blood levels of magnesium occur in 30% to 60% of alcoholics, and in nearly 90% of patients experiencing alcohol withdrawal [17-18]. Anyone who substitutes alcohol for food will usually have significantly lower magnesium intakes.
Individuals with chronic malabsorptive problems such as Crohn's disease, gluten sensitive enteropathy, regional enteritis, and intestinal surgery may lose magnesium through diarrhea and fat malabsorption [22]. Individuals with these conditions may need supplemental magnesium.
Individuals with chronically low blood levels of potassium and calcium may have an underlying problem with magnesium deficiency. Magnesium supplements may help correct the potassium and calcium deficiencies [19].
Older adults are at increased risk for magnesium deficiency. The 1999-2000 and 1998-94 National Health and Nutrition Examination Surveys suggest that older adults have lower dietary intakes of magnesium than younger adults [6,23]. In addition, magnesium absorption decreases and renal excretion of magnesium increases in older adults [4]. Seniors are also more likely to be taking drugs that interact with magnesium. This combination of factors places older adults at risk for magnesium deficiency [4]. It is very important for older adults to consume recommended amounts of dietary magnesium.

Doctors can evaluate magnesium status when above-mentioned medical problems occur, and determine the need for magnesium supplementation.

Found at:  http://ods.od.nih.gov/factsheets/magnesium.asp
Helpful - 0
327487 tn?1206474681
Hello,
I recently had a hemi-thyroidectomy (right side) on February 27th.  Since then I have had tingling in my left arm and hand.  I saw my endocrinologist on the 5th.  He checked my thyroid using some camera that went up my nose and down my throat (HORRIBLE FEELING).  He said my vocal chords appeared swollen still but that that was no concern.  However, he did notice that the left parathyroid glands were enlarged more than normal and cause for concern.  He scheduled me for a follow up exam for the 14th of April.  Meanwhile my hand and arm are still tingling.  Should I start chewing on some calcium supplements?  If so what?  Also, should I call my doctor to let him know what is going on?  Thanks guys :)
Helpful - 0
Avatar universal
I also had a TT in July "06. The day following my surgery I experienced extreme tetany and thought I was going to die. My calcium, magnesium and potassium levels completely bottomed out. I spent 5 days in the hospital to get my levels to normal. I still struggle with muscle weakness and the occasional spasm. But for the most part, my levels remain on the low/normal side. I think my last calcium level was 8.3. I currently take 500mg of calcium twice a day, 400 mg of magnesium twice a day, and .025 mcg of rocaltrol (vit.D). I also take 100 of Levoxyl. Good luck in your recovery process. I say process because I don't think we will ever fully recover from this.
Helpful - 0
280485 tn?1249013844
I have been constantly having muscle cramps since my TT in September.  I called the surgeon and he said that my calcium levels were within normal range and keep eating Tums, so I've tried to tuff it out the last couple of months.  Last week I had my calcium and vit d levels checked again as I still felt "weird" and tingling had started in my hands and feet.  Vit D should be 40-50.  Mine came back 10.  After doing a little research and with the help of the forum, I've found that calcium CANNOT be asorbed by your body without vit d.  So although my calcium levels were fine, I was not deriving any benefit from them because my body couldn't use it without adaquate vit d.  I just started taking 2000 IU of vit d along with liquid calcium.  Already slept 100 times better last night!  Here's a web site I found VERY interesting!  http://findarticles.com/p/articles/mi_m0813/is_n8_v24/ai_19928282
Helpful - 0
219241 tn?1413537765
Hi, I had TT on Dec 14 2007, and have felt pretty yuk ever since. I take 100mcg thyroxine and expected to start feeling better by now, ot worse! Almost immediately after surgery I had funny buzzing tingling down my forearms and into my hands. I told the nurses this and they asked each other but no-one had ever heard of that happening before. Later that night I was tested for calcium and then had nurses rushing around saying "Swallow these NOW!" Hmmm says me, I know I am always low on calcium but these horse pills are interesting. Over the next few days they kept asking was I having tingling around my mouth etc...Yes I said. Tests kept showing low calcium.The surgeon said to me that she thought maybe the parathyroids got 'bruised' I thought, fair enough. But now having read up about surgery induced hypoparathyroidism , I KNOW now that is what it is. I get tested again for levels in 2 more weeks.  So, I am not a long term patient of this but I think I am heading that way! I have no idea what my levels were whilst in hospital, as I was pretty out of it from the anasthesia for 2 days..( i react badly to it...sigh....) I take 2,400mg of Caltrate. a
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