# Calcium is STILL too low :(



## prettynikki5 (Dec 9, 2009)

Since my TT in June I have had low calcium. I have been on Rolcaltrol and Calcitrol for 7 months and it is still below level. I am getting concerned about the toll the lack of calcium is taking on my body. How long will this last? What else can I do, or is this just something I must deal with...
Does anyone know the average amount of time the parathyroids take to heal and start working again?


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## desrtbloom (May 23, 2010)

Hi:

Do you take any stomach meds? My surgeon told me to make sure that I take the Calcium with Citrate because I take Prevacid and Zantac regularly and without the Citrate the stomach meds do not properly break down the calcium

I was also told by my surgeon that it can take two years for everything to properly heal.

Patti


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## prettynikki5 (Dec 9, 2009)

desrtbloom said:


> Hi:
> 
> Do you take any stomach meds? My surgeon told me to make sure that I take the Calcium with Citrate because I take Prevacid and Zantac regularly and without the Citrate the stomach meds do not properly break down the calcium
> 
> ...


No stomach meds. Two years?! Wow...I think I heard a year or so. I have a lot of low calcium symtpoms that I unhappily live with and I am just worried about the condition of my bones/teeth etc. over time.


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## Andros (Aug 26, 2009)

prettynikki5 said:


> Since my TT in June I have had low calcium. I have been on Rolcaltrol and Calcitrol for 7 months and it is still below level. I am getting concerned about the toll the lack of calcium is taking on my body. How long will this last? What else can I do, or is this just something I must deal with...
> Does anyone know the average amount of time the parathyroids take to heal and start working again?


Are you taking magnesium as well? Do you know if any of your 4 parathyroids were removed?

Something seems wrong here. You might find this of interest.

http://parathyroid.com/low-calcium.htm

Where "is" your calcium within the designated lab range?


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## prettynikki5 (Dec 9, 2009)

Andros said:


> Are you taking magnesium as well? Do you know if any of your 4 parathyroids were removed?
> 
> Something seems wrong here. You might find this of interest.
> 
> ...


That link was so informative!

"Calcium and Vitamin D Requirements. 
Patients who have had all of their parathyroid glands removed or destroyed will require high doses of calcium and Vitamin D every day for the rest of their lives. Almost all patients in our study are required to take 4 or more calcium pills per day. Two-thirds (67%) have to take 5 or more calcium pills per day, and 25% have to take 8 or more calcium pills per day. Almost all patients take at least 2 Vitamin D pills per day, with 1/3 taking 3 or more per day. Thus, most patients who have hypoparathyroidism must take 8 or more pills per day in order to carry on the daily functions of life.

Despite taking these pills, 45% of patients say they still get symptoms of low calcium at least once per day. The most common symptoms reported by these patients are: fatigue (77%), hand cramps (68%), mental confusion (43%), and anxiety/fear (36%). One third of patients state that they get these symptoms once or twice per week, while only 5% say they rarely or never get these symptoms.

Work and Employment 
Having hypoparathyroidism often makes people feel bad frequently enough that nearly 25% say they cannot work and have become unemployed. Of those still working, 72% said they had to change jobs because of concentration abilities or other issues related to symptoms (can't teach school, can't drive a truck, etc). 65% of patients say they miss 2 weeks or more of work per year more than they ever did before. One third stated that their employer doesn't understand their issues and why they are sick on a frequent basis.

Personal Interactions 
A minority of patients say their family "understands" how they feel and their family has been great. However, 78% say their family and/or friends "simply don't get it". Just over 40% have been put on antidepressants. Two thirds say that hypoparathyroidism and the symptoms it causes have put significant stress on their relationship, with 8% saying this ailment is directly responsible for the breakup of their marriage. Clearly, patients with hypoparathyroidism feel poorly and this puts significant stress on their interactions with others. "

This is ME!!! This would explain why I still feel so bad  I am not taking magnesium, this I need to try.

1 of my parathyroids was removed and the others were 'bruised'. 
My current calcium level is: 7.8 (8.4 - 10.5 MG/DL )
It has been 7.6 or 7.8 since my TT in June.


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## Andros (Aug 26, 2009)

prettynikki5 said:


> That link was so informative!
> 
> "Calcium and Vitamin D Requirements.
> Patients who have had all of their parathyroid glands removed or destroyed will require high doses of calcium and Vitamin D every day for the rest of their lives. Almost all patients in our study are required to take 4 or more calcium pills per day. Two-thirds (67%) have to take 5 or more calcium pills per day, and 25% have to take 8 or more calcium pills per day. Almost all patients take at least 2 Vitamin D pills per day, with 1/3 taking 3 or more per day. Thus, most patients who have hypoparathyroidism must take 8 or more pills per day in order to carry on the daily functions of life.
> ...


Whoa...............that is low; not good. Glad the article was informative. Yes on the magnesium.

Now you have a plan and do discuss this w/your doctor.


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## lavender (Jul 13, 2010)

I had the same situation with my parathyroids after my TT in August. 1 removed and the other 3 were "stunned." I could not get enough calcium and it was miserable! I was taking 16 Citracal a day. I started taking vitamin D and Magnesium every day and felt better the first day! I know there is vitamin D in many Calcium supplements, but that did not work for me. I was on Calcitriol for a month as well and felt no better. I take 5000 iu D and 235 mg Reacted Magnesium daily. I now only need 2 calcium pills a day, which is a normal dose. I read somewhere that magnesium actually increases parathyroid functioning. My doc was checking my parathyroid (PTH level) functioning, and they are gradually improving. Is your doctor checking yours?


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## prettynikki5 (Dec 9, 2009)

lavender said:


> I had the same situation with my parathyroids after my TT in August. 1 removed and the other 3 were "stunned." I could not get enough calcium and it was miserable! I was taking 16 Citracal a day. I started taking vitamin D and Magnesium every day and felt better the first day! I know there is vitamin D in many Calcium supplements, but that did not work for me. I was on Calcitriol for a month as well and felt no better. I take 5000 iu D and 235 mg Reacted Magnesium daily. I now only need 2 calcium pills a day, which is a normal dose. I read somewhere that magnesium actually increases parathyroid functioning. My doc was checking my parathyroid (PTH level) functioning, and they are gradually improving. Is your doctor checking yours?


No, he's not checking. I am adding magnesium TODAY! Thank you for your help, you actually told me to start taking the Citrical instead of Caltrate a couple weeks back, so thank you again for that good advice  I asked the doc if I should add Magnesium, he never commented on that, he just advised me to double my dose of Rolcaltrol daily and he is testing my levels again next week to see how that does. Adding magnesium anyway...
Thanks for all your help!!!!
:hugs:


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## lavender (Jul 13, 2010)

My endo never mentioned Magnesium either. I spoke to my PCP after I started taking it, and she basically said of course I needed it. It was the missing link for me. 
I also sent lots of healing thoughts to my parathyroid. Envisioned them healing and healthy. It felt like something I could do since I could not actually fix them.
You might ask your doc to start checking your PTH level. Parathyroid hormone level. that will let you know how well your parathyroids are working. For me, it helped me to see that mine were gradually improving. 
When I was researching what was happening to me, I saw that there are some clinical trials involving replacing the parathyroid hormone in people who have low PTH levels for a year past surgery. Might be something for you to look into if yours don't actually heal. But I think that most heal and suspect that yours will too!


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## Andros (Aug 26, 2009)

prettynikki5 said:


> No, he's not checking. I am adding magnesium TODAY! Thank you for your help, you actually told me to start taking the Citrical instead of Caltrate a couple weeks back, so thank you again for that good advice  I asked the doc if I should add Magnesium, he never commented on that, he just advised me to double my dose of Rolcaltrol daily and he is testing my levels again next week to see how that does. Adding magnesium anyway...
> Thanks for all your help!!!!
> :hugs:


Magnesium is good. 500 mgs. per day. Magnesium is a "piggy back" mineral in that it "carries" the calcium into the bones and tissues where needed. Magnesium is the major "transporter" of calcium.

Please let me (us) know the minute you think you feel better having taken the magnesium. I think magnesium citrate is probably the better choice rather than the oxide. And then there is magnesium gluconate which I believe is bioavailable.

http://www.livestrong.com/article/254717-why-do-we-need-magnesium-in-our-diet/

http://ezinearticles.com/?Do-You-Ne...alcium-Intake?-Get-Some-Magnesium!&id=5597478


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## lavender (Jul 13, 2010)

Weird, I just got labs back from my new doctor. She checked Calcium, Vitamin D and Magnesium after I told her I was taking all three. My calcium was pretty low in the range.
8.7 (8.6-10.0). 
The only other lab I have showing it lower was when I was in the ER getting an IV dose. I had been slacking on my dose as well since I had not noticed any symptoms. I guess this is a reminder to keep taking it! Your post was well timed to remind me!

My vitamin D level has gone from 33 in August to 52.4 (30-100) and she said I could lower my supplement. Since I still have about a month's worth of the 5000 IU, I will probably finish that off and then go buy some of the 2000 she is recommending.

My Magnesium looks good at 2.2 (1.6-2.6).

She did not check my PTH level, and I will ask her about it when I see her later this month.


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## prettynikki5 (Dec 9, 2009)

Andros said:


> Magnesium is good. 500 mgs. per day. Magnesium is a "piggy back" mineral in that it "carries" the calcium into the bones and tissues where needed. Magnesium is the major "transporter" of calcium.
> 
> Please let me (us) know the minute you think you feel better having taken the magnesium. I think magnesium citrate is probably the better choice rather than the oxide. And then there is magnesium gluconate which I believe is bioavailable.
> 
> ...


The only form of Magnesium I found in the local drugstores is oxide. I went ahead and bought it,took 3 immediately (3=400mg), turns out the Citrical supplement I have already been taking has 80mg per 2 tablets and I take about 6 per day. I have been taking this dose of magnesium for almost a week. I have noticed that I feel a little better, a break from the headaches, still have them but but it's not an all day thing, I don't think there's been a huge improvement, I am still sitting at work with my eyes twitching and having moments of an uncooperative brain, anxiety and aching muscles and fatigue. I did a lot of housework on Saturday and paid for it dearly by being crippled the rest of the evening. If i sit down, forget it, everything seems to stiffen up and ache. 
To make things even more interesting, my doubled dose of Rolcaltrol dehydrates me, so I am in the bathroom peeing out every drop of water in my body, nose running and water is becoming my very best friend. After my TT when I was on this stuff, it did the same. Doc insists since it is "only Vitamin D" it cannot be the Rolcaltrol dehydrating me. Whatever. 3 times on this stuff and every time the same thing happens. I want to keep taking it so I can get my Calcium up, but it obviously isn't that great for me either. Boo.
I think I will locate or order another type of Magnesium, the chelated (sp?) that Lavender mentioned seems like a great thing.
I have high hopes!
Thank you so much for your help as always <3


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## lavender (Jul 13, 2010)

I am taking "Reacted Magnesium" form Ortho Molecular Products. My chiropractor recommended it because it is easily absorbed. I initially got it out of her office, but then ordered a bottle on-line because it was cheaper to buy in bulk.


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## Andros (Aug 26, 2009)

prettynikki5 said:


> The only form of Magnesium I found in the local drugstores is oxide. I went ahead and bought it,took 3 immediately (3=400mg), turns out the Citrical supplement I have already been taking has 80mg per 2 tablets and I take about 6 per day. I have been taking this dose of magnesium for almost a week. I have noticed that I feel a little better, a break from the headaches, still have them but but it's not an all day thing, I don't think there's been a huge improvement, I am still sitting at work with my eyes twitching and having moments of an uncooperative brain, anxiety and aching muscles and fatigue. I did a lot of housework on Saturday and paid for it dearly by being crippled the rest of the evening. If i sit down, forget it, everything seems to stiffen up and ache.
> To make things even more interesting, my doubled dose of Rolcaltrol dehydrates me, so I am in the bathroom peeing out every drop of water in my body, nose running and water is becoming my very best friend. After my TT when I was on this stuff, it did the same. Doc insists since it is "only Vitamin D" it cannot be the Rolcaltrol dehydrating me. Whatever. 3 times on this stuff and every time the same thing happens. I want to keep taking it so I can get my Calcium up, but it obviously isn't that great for me either. Boo.
> I think I will locate or order another type of Magnesium, the chelated (sp?) that Lavender mentioned seems like a great thing.
> I have high hopes!
> Thank you so much for your help as always <3


Okay; if you are voiding that much,no doubt the electrolytes are out of balance.

I do not have a vested interest in this product financially but I do healthwise. I have taken this product for years and years; 2 capsules per day.

We must realize that we no longer function like the normal body should. We do not metabolize properly, thermogenics are out the window and we have major deficiencies in many vitamins and minerals.

Nutribiotic Vegan Essential Electrolytes @ Vitamin Express. You can order on-line.

Electrolytes are funny in that if you take too much of one electrolyte, the others tumble about out of balance. Calcium and Magnesium are electrolyte minerals.

There are others. Zinc, Chromium,Chloride,Sodium and Potassium. Add Calcium and Magnesium and you have the complete electrolyte replacement in balance.

You may wish to research what I am saying and give the above some thought.

Let me know.


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## prettynikki5 (Dec 9, 2009)

Andros said:


> Okay; if you are voiding that much,no doubt the electolytes are out of balance.
> 
> I do not have a vested interest in this product financially but I do healthwise. I have taken this product for years and years; 2 capsules per day.
> 
> ...


I am almost done with my first bottle  I have been taking 2/day.


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## prettynikki5 (Dec 9, 2009)

lavender said:


> I am taking "Reacted Magnesium" form Ortho Molecular Products. My chiropractor recommended it because it is easily absorbed. I initially got it out of her office, but then ordered a bottle on-line because it was cheaper to buy in bulk.


I found a good deal on 180 caps @ Amazon, $30 + shipping. I am going to have to wait until payday (15th) to order it though  
I am taking so many pills per day between my thyroid meds in the morning, 6 Citrical (2 at a time x 3xday), 2 Rolcaltrol (synthetic Vit D),2 Electrolyte Essentials per day, and 2/day Omega Women supplement. Now I have added the 3 magnesium caps/day. That is 16+ 'pills' per day in total, I also have cut back on smoking/coffee (try to drink decaf as much as possible) and eating bananas every day (for potassium) added much more yogurt,cheese,milk......yet, I went to bed with a headache, woke up with it, still have it, my eyes are twitching, all of my muscles feel really 'tight' and achey. I just am so frustrated, I feel like I am doing everything I can to get my Calcium levels where they need to be. I hope the reacted Magnesium is the key for me to.
I am going to also ask my doc to start trcking the PTH levels as well, this would be a big help to see if there is progress.
I do not like a problem I cannot fix!


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## Andros (Aug 26, 2009)

prettynikki5 said:


> I am almost done with my first bottle  I have been taking 2/day.


Do you believe I "forgot" that?? Ha, ha!! I must need a supplement for the brain today! LOL!!

You are such a good girl! I am glad you are taking them. You have been through so much. It does take time for the body to catch on that you are "healing!"

It is suggested to allow 18 months for total and complete return of quality of life.


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## prettynikki5 (Dec 9, 2009)

Andros said:


> Do you believe I "forgot" that?? Ha, ha!! I must need a supplement for the brain today! LOL!!
> 
> You are such a good girl! I am glad you are taking them. You have been through so much. It does take time for the body to catch on that you are "healing!"
> 
> It is suggested to allow 18 months for total and complete return of quality of life.


lol! It is to be expected when you are helping so many people  And you sure have helped me TONS since I joined 1 year ago, yep so glad to have you on my journey....
I have decided to start praying to heal


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## lavender (Jul 13, 2010)

prettynikki5 said:



> I found a good deal on 180 caps @ Amazon, $30 + shipping. I am going to have to wait until payday (15th) to order it though
> I am taking so many pills per day between my thyroid meds in the morning, 6 Citrical (2 at a time x 3xday), 2 Rolcaltrol (synthetic Vit D),2 Electrolyte Essentials per day, and 2/day Omega Women supplement. Now I have added the 3 magnesium caps/day. That is 16+ 'pills' per day in total, I also have cut back on smoking/coffee (try to drink decaf as much as possible) and eating bananas every day (for potassium) added much more yogurt,cheese,milk......yet, I went to bed with a headache, woke up with it, still have it, my eyes are twitching, all of my muscles feel really 'tight' and achey. I just am so frustrated, I feel like I am doing everything I can to get my Calcium levels where they need to be. I hope the reacted Magnesium is the key for me to.
> I am going to also ask my doc to start trcking the PTH levels as well, this would be a big help to see if there is progress.
> I do not like a problem I cannot fix!


I have been there and remember how awful it was. I was taking 16-20 citracal a day and still having the headaches and muscle aches. I do hope this gets better for you!

Hugs


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## prettynikki5 (Dec 9, 2009)

lavender said:


> I have been there and remember how awful it was. I was taking 16-20 citracal a day and still having the headaches and muscle aches. I do hope this gets better for you!
> 
> Hugs


Just knowing you were there and got through it makes me feel better. Thank you  It really means alot
:hugs:


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## lavender (Jul 13, 2010)

You are welcome. In the meantime, if you pray meditate, whatever you do, direct the energy towards your neck and those 4 little rice sized glands. I am envisioning them healing getting stronger and healthier as the scar tissue from your thyroid gradually repairs itself.

Did your surgeon ever mention if any of your parathyroids were removed during your surgery? One of mine was, it was inside my thyroid gland.


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## prettynikki5 (Dec 9, 2009)

lavender said:


> You are welcome. In the meantime, if you pray meditate, whatever you do, direct the energy towards your neck and those 4 little rice sized glands. I am envisioning them healing getting stronger and healthier as the scar tissue from your thyroid gradually repairs itself.
> 
> Did your surgeon ever mention if any of your parathyroids were removed during your surgery? One of mine was, it was inside my thyroid gland.


Yes, same as you. 1 removed and 3 others 'bruised'. Are yours working again? If so, how long did it take?


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## lavender (Jul 13, 2010)

My parathyroid levels have been steadily increasing. I haven't had them checked in a couple months because of the switch to the new doc. I'll have to ask her to check them again when I see her in two weeks. From what I remember, things started to get better about 3 months after surgery. I really noticed major improvement the day I started the D and Magnesium. It might have been about a week until I was feeling optimal.


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## Mustang01 (Jul 9, 2010)

Yes, I agree with the Magnesium, very important to take! (remember the body has to be balanced in mag, potassium and calcium in order for the bones and muscles including your heart to function proper). Make sure that the Vita-D is D3, your gut/small intestine is the only area in the body that absorbs the nutriants and the Vita-D improves the amount of absorption in the small intestine. The Vita-D also helps the transportation of calcium into the bone. Vita-D has many other benifits including decreasing pain in the bone and muscle where it is critically needed for proper function.
Salenium is good for the thyroid and can improve the way thyroid meds work.
Now for the Calcium, make sure it is the kind the body absorbs/utalizes best, most calciums are made from sea shells, yes, sea shells and is way to hard for the body to breakdown and use. As with all Vitamines, make sure they are all natural, some believe it or not, arn't! an example of one is Iron.


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## prettynikki5 (Dec 9, 2009)

UPDATE: Got labs done and Calcium levels are good! Well within normal levels:9.6 (8.4-10.5 MG/DL) YES!!!! This is awesome  I have been taking 500mg Magnesium Oxide daily(haven't ordered the 'reacted' as of yet) and the increased dose of Rolcaltrol (synthetic VitD) .10mcg/per day. and of course about 6 Citical per day. 
Doctor agreed to start testing PTH levels next month and will run Calcium/Thyroid labs again to see about increasing T3. I still have some lingering symptoms that I thought were low-Calcium related, so maybe just an increase in T3 will take care of those symptoms. He also stated that he thinks I will have to 'take some dose of Rolcaltrol FOREVER', this really surprised me. I thought once my parathyroids healed, all would be normal again and I would not need all these supplements. That stuff is really expensive!
Started back at the gym last week and boy do I have plenty of stamina and it makes my body really really happy to be back in the groove


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## Andros (Aug 26, 2009)

prettynikki5 said:


> UPDATE: Got labs done and Calcium levels are good! Well within normal levels:9.6 (8.4-10.5 MG/DL) YES!!!! This is awesome  I have been taking 500mg Magnesium Oxide daily(haven't ordered the 'reacted' as of yet) and the increased dose of Rolcaltrol (synthetic VitD) .10mcg/per day. and of course about 6 Citical per day.
> Doctor agreed to start testing PTH levels next month and will run Calcium/Thyroid labs again to see about increasing T3. I still have some lingering symptoms that I thought were low-Calcium related, so maybe just an increase in T3 will take care of those symptoms. He also stated that he thinks I will have to 'take some dose of Rolcaltrol FOREVER', this really surprised me. I thought once my parathyroids healed, all would be normal again and I would not need all these supplements. That stuff is really expensive!
> Started back at the gym last week and boy do I have plenty of stamina and it makes my body really really happy to be back in the groove


You sound like you are "back in the groove!" How awesome is that? I am so so happy for you; I truly am.

You will give our posters a lot of hope. Many of them need reassurance that ultimately, they will recover.

Good for you, GF!


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## prettynikki5 (Dec 9, 2009)

As a side note: I find it interesting that as my Calcium level increased, so did my glucose level. It was 99 just a hair below beling over normal range. Last time my Calcium was at a normal level briefly a couple months ago, my glucose shot up then too.
Hmmmm....Perhaps there is something up with that.


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## prettynikki5 (Dec 9, 2009)

Andros said:


> You sound like you are "back in the groove!" How awesome is that? I am so so happy for you; I truly am.
> 
> You will give our posters a lot of hope. Many of them need reassurance that ultimately, they will recover.
> 
> Good for you, GF!


Thank you Andros! I really appreciate that  It is definitely a process, but it sure helps to be able to come here for help, advice, venting, and support!
hugs4


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## Andros (Aug 26, 2009)

prettynikki5 said:


> As a side note: I find it interesting that as my Calcium level increased, so did my glucose level. It was 99 just a hair below beling over normal range. Last time my Calcium was at a normal level briefly a couple months ago, my glucose shot up then too.
> Hmmmm....Perhaps there is something up with that.


After you read this.........
http://endo.endojournals.org/cgi/content/abstract/99/5/1304

I think you will agree w/me that your body just has to adjust for it plainly states that it is a catch 22. It (calcium) will decrease and increase glucagon.

My opinion is to stay on track here and give your system time to regulate and adjust.

This can take up to 18 months for "some" things.


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## lavender (Jul 13, 2010)

I am so glad to hear your good news! I had the same experience with the Magnesium. I wonder why doctors don't tell us these things! Time will tell if you need to stay on the Rocaltraol. I think having the PTH levels will help you monitor how your parathyroids are doing.


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## prettynikki5 (Dec 9, 2009)

Andros said:


> After you read this.........
> http://endo.endojournals.org/cgi/content/abstract/99/5/1304
> 
> I think you will agree w/me that your body just has to adjust for it plainly states that it is a catch 22. It (calcium) will decrease and increase glucagon.
> ...


Woah! Many big words in that study, LOL!
Yes, I agree with you on this. Thank you for taking the time to look that ifo up for me. Very helpful


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## Andros (Aug 26, 2009)

prettynikki5 said:


> Woah! Many big words in that study, LOL!
> Yes, I agree with you on this. Thank you for taking the time to look that ifo up for me. Very helpful


If nothing else, it is reassuring. You are in healing mode. It will take time and diligence.


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## prettynikki5 (Dec 9, 2009)

I came across the following info on Rolcaltrol (I am taking the generic form-Calcitriol)
These are the side effects of Calcitriol:
"Other rare but serious symptoms of Calcitriol include weakness, dry mouth, muscle and bone pain, weakness, drowsiness, changes in behavior, a metallic taste in the mouth, weight loss, thirst, frequent or painful urination, changes in vision, fever or chills, pale and fatty stools, jaundice, loss of libido, irregular heartbeat, runny nose, and breathing difficulties. Patients who experience these symptoms may have accumulated excessive calcium in their body and should call their doctor immediately."
I have many of these "serious side effects" and have had these same side effects EVERY time doc has put me on Rolcaltrol. This is the 3rd time since my TT, every time-same side effects. Every time I have brought these up to my doc he tells me that Rolcaltrol is only synthetic Vitamin D-there's no correlation between these symptoms and the Rolcaltrol. 
After finding this info I emailed my doc. "Every time I take this I have these symptoms. Obviously I do not have excessive Calcium, what could be the other reason why I am having these "serious symptoms"? Once again, I am worried about continuing to take it. This is why I am telling you I 'feel' dehydrated, I am super thirsty all the time and urinating like crazy.You say there is no correlation, but it appears there is."
His response to me was:
"Most of these side effects are related to toxicity if you take too much Rocaltrol. These are symptoms of high calcium rather than Rocaltrol itself. I don't think you have a choice here, you need it to keep your calcium normal. "
Is there something wrong here? I have tried to find out why I would have these side effects and only 2 logical things I could come up with are too much calcium (could not be the case for me) or too much VitD. I just feel something is wrong here, and I understand this helps to increase my Calcium, but I just added Magnesium and my calcium levels finally got to normal, so it may not even be helping as much as my doc thinks. How can it help when it makes me pee out everything I put into my body? Not to mention all the other side effects,ugh! And he says I have no choice. 
What to do?


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## lavender (Jul 13, 2010)

Um, I'm a little concerned by your doctor's lack of concern for your reported side effects. He seems pretty set in believing there are no alternative ways to treat this. He's also showing no concern for how your kidneys could be affected by this.

"Warning! * You will need to have blood tests to check your kidney function and the levels of calcium in the blood whilst taking this medicine."
http://www.netdoctor.co.uk/medicines/100002296.html

I don't want to tell you something that would jeopardize your health. I'm not your doctor. I am just a lay person who has tried to understand what has happened in my own body, and I can share my experience.

I was on calcitriol (generic rocaltrol) for a month. My calcium never stabilized like my doctor said it should. I continued to take high doses of calcium and feel low calcium levels daily, even though my lab tests said my calcium was "normal."

My new insurance refused to cover calcitriol, I could not afford the $80 script, and my doctor told me it was not that important (I thought it was and had an hour long conversation with my insurance company trying to figure out how to make them pay for it). So, I reluctantly went off the med. Nothing changed, better or worse with my calcium symptoms.

Then, I added magnesium and 5000 iu over-the-counter vitamin D3. And suddenly, I felt better. My calcium issues disappeared almost immediately. Although I do still take 2-3 doses of calcium daily, it does not compare to the 8-10 doses I was taking before the magnesium, and I don't feel the low calcium symptoms.

And my parathyroid levels (PTH) have slowly increased. I mention this because I read somewhere that Calcitriol actually suppresses the production of PTH in the body. When your body senses there is enough D2, it stops producing PTH (since PTH converts D3 into the active form of D2), when there is not enough D2, your body makes more PTH. I would be concerned that taking Rocaltrol/Calcitriol/D2 would stop the parathyroids from ever recovering on their own, if there is any chance of recovery.

Ultimately, it's YOUR body. YOU have to decide what is best for it, regardless of what your doctor (or another patient on a chat board) tells you to do.


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## lavender (Jul 13, 2010)

Here's a link on calcitriol
http://www.marvistavet.com/html/body_calcitriol.html

and another on Hypocalcemia:
http://howshealth.com/hypocalcemia

I just want to play devil's advocate for a moment and point out that many of your symptoms could be from something other than the med:

weakness: hypothyroid 
dry mouth: ? 
muscle and bone pain: low calcium, hypothyroidism, degenerative disease
drowsiness: hypothyroid
changes in behavior: hypothyroid
a metallic taste in the mouth: ?
weight loss: hypethyroid lack of eating because of not feeling well
thirst: it's winter
frequent or painful urination: ?
changes in vision: Graves eye disease
fever or chills: thyroid, cold, flu
pale and fatty stools: thyoird
jaundice: Liver
loss of libido: being sick for so long 
irregular heartbeat: thyroid, low calcium, vitamin B 
runny nose: sinus infection 
breathing difficulties: cold


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## lavender (Jul 13, 2010)

Two more thoughts...

Have they checked your vitamin D level by bloodwork? This can tell you if D is a problem. I think the range for D is like 30-100, but ideally it should be above 50

"30-50	Generally considered inadequate for bone and overall health in healthy individuals
≥50	Generally considered adequate for bone and overall health in healthy individuals"
http://ods.od.nih.gov/factsheets/vitamind/

"Levels should be above 50 ng/ml (125 nmol/L) year-round, in both children and adults. "
http://www.vitamindcouncil.org/health/deficiency/am-i-vitamin-d-deficient.shtml

The vitamin D I am taking is not any old D off the grocery store shelf. I got it from my chiropractor. It is Pure encapsulations Vitamin D3 5000 iu. I say this because not all D is easily absorbed. I was taking tons of D (4000-5000iu daily) in my Calcium supplements every day, and that did not help at all


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## prettynikki5 (Dec 9, 2009)

lavender said:


> Um, I'm a little concerned by your doctor's lack of concern for your reported side effects. He seems pretty set in believing there are no alternative ways to treat this. He's also showing no concern for how your kidneys could be affected by this.
> 
> "Warning! * You will need to have blood tests to check your kidney function and the levels of calcium in the blood whilst taking this medicine."
> http://www.netdoctor.co.uk/medicines/100002296.html
> ...


Yes, kidneys. This concerns me too particularly. My lil sis died a few years ago of kidney disease. I know what that does to your body. My nose runs, I pee non stop and am so thirsty 24/7, I even dream about peeing and drinking liquids, LOL! Every time I get these same side effects. Every time he tells me it's not the Rolcaltrol. 
"_I continued to take high doses of calcium and feel low calcium levels daily, even though my lab tests said my calcium was "normal." _ME TOO!! My levels are finally normal and I don't exactly 'feel' it.
"_My new insurance refused to cover calcitriol, I could not afford the $80 script,"_ I just called in a refill and they are fighting with my insurance co. as we type, and it does cost $80 here too, ridiculous.
Thank you for sharing your experience.


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## prettynikki5 (Dec 9, 2009)

lavender said:


> Two more thoughts...
> 
> Have they checked your vitamin D level by bloodwork? This can tell you if D is a problem. I think the range for D is like 30-100, but ideally it should be above 50
> 
> ...


I have asked him to lab my VitD levels before and he said it is pointless or something to that effect. He has actually been a pretty good doctor, but this one issue he seems to act like I am just pulling it all out of my you-know-what. Do you think it's possible that I may have _too much _VitD going on? If my levels are good, could it be bad to be taking more VitD (Rolcaltrol) when I don't need it to begin with? I also read that I should really not consume products that have VitD in them (dairy products etc.) I eat/drink A LOT of stuff every single day with VitD in it, I thought I was supposed to.


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## prettynikki5 (Dec 9, 2009)

[quote name='lavender']Here's a link on calcitriol
http://www.marvistavet.com/html/body_calcitriol.html

and another on Hypocalcemia:
http://howshealth.com/hypocalcemia

I just want to play devil's advocate for a moment and point out that many of your symptoms could be from something other than the med:

dry mouth: ? 
muscle and bone pain: low calcium, hypothyroidism, degenerative disease
drowsiness: hypothyroid
changes in behavior: hypothyroid

weight loss: hypethyroid lack of eating because of not feeling well
thirst: it's winter
frequent urination: ?
changes in vision: Graves eye disease

irregular heartbeat: thyroid, low calcium, vitamin B 
runny nose: sinus infection

I do believe I am a tad hypo at the moment, and so I think 'some' of my symptoms may be from that. The main symptoms I get every time I take Rolcaltrol are the ones I didn't delete from above. These are all the side effects that I have, none of the others. Always the runny nose, frequent urination and thirst.


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## lavender (Jul 13, 2010)

Grrr on the vitamin D levels. I know a lot of traditional docs think they're not important, but for goodness sake, they are giving you prescription D! My endo was an idiot, but at least he would run labs when I asked him to! From what I have been told, it is pretty rare to have high vitamin D levels, but I suppose it's possible. You won't know without a blood test. Do you have a family doc who you can convince to run a lab? Are you considering finding a new endo? Just wondering since this guy does not seem to be helping you.

I know all these symptoms are so hard to sort out. I had to first get my calcium under control, then quit taking vitamin B that was causing me heart palps, then find a doc who would take my non-existent T3 seriously and prescribe me Armour. I know there is still work to be done, but I could not climb the mountain overnight as badly as I wanted to.


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## prettynikki5 (Dec 9, 2009)

lavender said:


> Grrr on the vitamin D levels. I know a lot of traditional docs think they're not important, but for goodness sake, they are giving you prescription D! My endo was an idiot, but at least he would run labs when I asked him to! From what I have been told, it is pretty rare to have high vitamin D levels, but I suppose it's possible. You won't know without a blood test. Do you have a family doc who you can convince to run a lab? Are you considering finding a new endo? Just wondering since this guy does not seem to be helping you.
> 
> I know all these symptoms are so hard to sort out. I had to first get my calcium under control, then quit taking vitamin B that was causing me heart palps, then find a doc who would take my non-existent T3 seriously and prescribe me Armour. I know there is still work to be done, but I could not climb the mountain overnight as badly as I wanted to.


Do I have to be treated by an endo? I do have a wonderful PCP. I am thinking about asking him to treat me here on out. I thought having the Endo treat me was better, however it seems I get more info and help through these boards and my own research. I pretty much tell him what to do most of the time. He's not a bad doctor, but I feel like he doesn't really care like he should, being in charge of my health and all.


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## lavender (Jul 13, 2010)

I don't see an endo any more. I think a PCP is fully qualified to handle thyroid replacement. It's the parathyroid issue that is a bit more tricky, but it sounds like your endo is not handling that well either. From my own experience trying to research parathyroid issues, it seems like they are just extremely rare. Most endos are well trained at treating diabetes, and I have heard from many people on these boards that they are not so good at thyroid. In my opinion, it seems even less likely that they have any experience in treating parathyroid issues.

It wouldn't hurt to ask your PCP if he is willing to treat you, especially if you have a good relationship with him and he is willing to listen to your input about tests and medications. A PCP might also be willing to look at something outside the endocrine system such as kidneys. I loved my old PCP, but she functioned well by the book and was not comfortable with anything alternative like Armour. For now, my new PCP is handling my parathyroid issue, and I'm just waiting to see how that goes. I think I would have been more concerned about leaving my endo if I was still having a lot of low calcium symptoms, even though it was my chiropractor who helped me resolve them with the D and Magnesium. My endo turned out to be pretty useless for anything beyond ordering bloodwork.


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## prettynikki5 (Dec 9, 2009)

lavender said:


> I don't see an endo any more. I think a PCP is fully qualified to handle thyroid replacement. It's the parathyroid issue that is a bit more tricky, but it sounds like your endo is not handling that well either. From my own experience trying to research parathyroid issues, it seems like they are just extremely rare. Most endos are well trained at treating diabetes, and I have heard from many people on these boards that they are not so good at thyroid. In my opinion, it seems even less likely that they have any experience in treating parathyroid issues.
> 
> It wouldn't hurt to ask your PCP if he is willing to treat you, especially if you have a good relationship with him and he is willing to listen to your input about tests and medications. A PCP might also be willing to look at something outside the endocrine system such as kidneys. I loved my old PCP, but she functioned well by the book and was not comfortable with anything alternative like Armour. For now, my new PCP is handling my parathyroid issue, and I'm just waiting to see how that goes. I think I would have been more concerned about leaving my endo if I was still having a lot of low calcium symptoms, even though it was my chiropractor who helped me resolve them with the D and Magnesium. My endo turned out to be pretty useless for anything beyond ordering bloodwork.


Yep, same here, feels like my Endo is only good for ordering labs. I had no idea they were not experienced with parathyroid issues. Makes a lot of sense though, because he seems to know even less than I do on the treatment. The fact that he 1. Told me I would be on Calcitriol FOREVER, and 2. Dismisses my side effects that tell me to "call my doctor immediatley"...makes me want to think twice about him treating me further. 
I am also becoming more and more interested in trying a combined replacement med such as armour. What has been your experience with it? What is the breakdown of T4/T3 in each pill?
Thank you again for your time and info!! You are such a huge help hugs3


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## Andros (Aug 26, 2009)

prettynikki5 said:


> Do I have to be treated by an endo? I do have a wonderful PCP. I am thinking about asking him to treat me here on out. I thought having the Endo treat me was better, however it seems I get more info and help through these boards and my own research. I pretty much tell him what to do most of the time. He's not a bad doctor, but I feel like he doesn't really care like he should, being in charge of my health and all.


Absolutely go w/ the PCP. It is always very important that your medical provider care about "you!"

I don't see an endo.


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## lavender (Jul 13, 2010)

Parathyroids are a gland, therefore endo territory. It's just that hypoparathyroidism is very unusual. It can happen after surgery, but is rarely permanent. From what I remember my surgeon, it's in like less than 1% of surgeries. I am sure that endos study parathyroid disorders, but I think it's pretty rare to find someone who specializes in them. I know I looked, and would have had to drive 3 hours away to the Cleveland Clinic to see an endo who reportedly specialized in parathyroid.

From what I read, calcitriol is the treatment if your parathyroids don't get better. But until you have a PTH level drawn you will not know if they are working or not. Calcitriol can suppress PTH levels, so staying on a higher dose will not give your parathyroids a fair shot at working. You may find that you feel better taking the magnesium and OTC D. I don't know if your parathyroids are working now or if they will get better, it's just what worked for me.

This is from the Armour website: Armour provides both of the key thyroid hormones, levothyroxine (T4) and L-triiodothyronine (T3), in a 4.22:1 ratio (4.22 parts of T4 to one part of T3)

I have only been on Armour for a month now. I will say that I feel tons better. Friends keep commenting on how much better I look, that I looked sick while on synthroid and I have more color now. I think even my hair is shinier and getting it's red highlights back, but maybe I'm just imagining that.

When I was on synthroid, I could barely get off the couch. Washing the dishes was a major chore. I had trouble reading, and was struggling through two courses at school. Not working. Just felt miserable. I just finished a two week intensive course today, and managed it quite well. I ran across the quad twice today, and did laps through one of the buildings last week because I had so much energy I needed to release from sitting still for hours.

All my joints hurt while I was on synthroid, and it got worse the longer I was on it. My pain is back to my normal fibro level. Also, my whole body was swelling up, and that I has all gone down. I can see my nuckles right now. I couldn't knit because the joints in my fingers hurt so bad, and I just finished a project yesterday.

I'm starting to remember the names of people I met in the last few months. I feel human again.

I had a period. I had not had one in 4 months on synthroid.

The two things that concern me are: I have been feeling heart palpitations in the morning. Not terrible like when I was hyper. They aren't disrupting my sleep, and I don't feel anxious, but they are there and that concerns me. I also think I have had more loose stool since I have been on Armour. I see my doc tomorrow and will request labs to see if I'm at the right level for me.


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## Andros (Aug 26, 2009)

prettynikki5 said:


> Yep, same here, feels like my Endo is only good for ordering labs. I had no idea they were not experienced with parathyroid issues. Makes a lot of sense though, because he seems to know even less than I do on the treatment. The fact that he 1. Told me I would be on Calcitriol FOREVER, and 2. Dismisses my side effects that tell me to "call my doctor immediatley"...makes me want to think twice about him treating me further.
> I am also becoming more and more interested in trying a combined replacement med such as armour. What has been your experience with it? What is the breakdown of T4/T3 in each pill?
> Thank you again for your time and info!! You are such a huge help hugs3


Lavender is the "bomb!"

One grain of Armour contains 38 mcg. of T4 and 9 mcg. of T3.

Here is the PDF on that.

http://www.frx.com/pi/armourthyroid_pi.pdf

Here is the Armour Home Page

http://www.armourthyroid.com/


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## lavender (Jul 13, 2010)

Thanks Andros, I appreciate the compliments. But really, it's the Armour that's the bomb. 
Oink Oink.


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## prettynikki5 (Dec 9, 2009)

Andros said:


> Lavender is the "bomb!"
> 
> One grain of Armour contains 38 mcg. of T4 and 9 mcg. of T3.
> 
> ...


Oh, you guys have me so excited! LOL! arty0045: Thanks for all your help.
So....turns out my PCP knows my Endo and says that he is 'an excellent endocrinologist'. Great, now I feel like the psycho patient  I don't think he wants to take over the reigns. I don't have a backup plan, this is pretty frustrating. I do have to say that even with some low calcium symptoms going on now, I do feel a bit better off the Calcitriol. I haven't taken it in 4 days. Just the magnesium and Citrical. I know, I need to get that really good Vitamin D and the reacted Magnesium. Pay day is Friday


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## lavender (Jul 13, 2010)

How frustrating. I will have to say that my old PCP completely deferred to my endo in the end--which was funny because all along she had been telling me things that contradicted what he said without realizing it. I ended up firing them both and going to see an alternative medicine doc. It was frustrating to loose a doc I had a long term relationship with, but totally worth how much better I feel.


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## prettynikki5 (Dec 9, 2009)

lavender said:


> How frustrating. I will have to say that my old PCP completely deferred to my endo in the end--which was funny because all along she had been telling me things that contradicted what he said without realizing it. I ended up firing them both and going to see an alternative medicine doc. It was frustrating to loose a doc I had a long term relationship with, but totally worth how much better I feel.


I am so glad you are feeling much better now  Were you taking any form of T3 prior to starting Armour? How exactly do you go about finding a doctor that is willing to prescribe it? I keep reading that people have such a hard time 'convincing' there docs to get them on Armour. I am on Levothroid 137mcg (didn't like the Synthroid-felt crappy) and generic T3 5mcg.


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## lavender (Jul 13, 2010)

Nopo, I was on synthroid only before I started Armour, and my Free T3 was at the bottom of the range. I looked at all sorts of on-line references, but they just made me crazy. I talked to a lot of friends, asked them about their docs. Ended up at the alternative medicine center at the local university hospital. A friend of mine has some pretty severe issues (not thyroid) and had a really good opinion of his doctor. My new doc knows a lot about herbs and supplements and even studied in China. I made an appointment based on a gut instinct that she would be right for me. I have heard of some people calling up compounding pharmacies to ask what docs prescribe Armour. I didn't have the guts to do that, but it's an idea.


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## prettynikki5 (Dec 9, 2009)

lavender said:


> Parathyroids are a gland, therefore endo territory. It's just that hypoparathyroidism is very unusual. It can happen after surgery, but is rarely permanent. From what I remember my surgeon, it's in like less than 1% of surgeries. I am sure that endos study parathyroid disorders, but I think it's pretty rare to find someone who specializes in them. I know I looked, and would have had to drive 3 hours away to the Cleveland Clinic to see an endo who reportedly specialized in parathyroid.
> 
> From what I read, calcitriol is the treatment if your parathyroids don't get better. But until you have a PTH level drawn you will not know if they are working or not. Calcitriol can suppress PTH levels, so staying on a higher dose will not give your parathyroids a fair shot at working. You may find that you feel better taking the magnesium and OTC D. I don't know if your parathyroids are working now or if they will get better, it's just what worked for me.
> 
> ...


Lavender, 
I came back to this post because I remembered you writing this a while back and it struck me that this is exactly how I have begun to feel this last couple of weeks. I am wondering if I need to change to Armour too...I know my ANA is positive again, and I was thinking I had another autoimmune disease rearing it's ugly head,which I may-still doing some testing at the moment to see....but I was wondering how your levels were looking while you were feeling so bad...and you said it was getting worse.Did you have any anxiety as well? My body is swelling too, mainly in my hands and I find it hard to grip things and my muscles ache and feel weak. Is this how you were feeling too?


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## lavender (Jul 13, 2010)

Sounds pretty similar. My doctor wanted me to take anti-depressants for anxiety and depression, so I suppose I was anxious. Mostly I was worried about my heart palpitations, which she totally blew off. I have a feeling that if synthroid does not work for someone, it just sends the body into an auto-immune attack. It got better pretty quickly for me. It's pretty nice to be able to see the joints and bones in my fingers again instead of them being puffed up like sausages!

Have you had any labs run recently? When I got so bad, my T4 was at the top of the scale, and T3 was at the bottom.


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