Re: major calcium problems

[Guest guest]

Hi,

Let me guess---were you on Tums? Or another form of calcium carbonate? There is

a Brand Name calcium citrate that you can have on LID. It is made by Twinlab and

you will find it in a health food store. It can be taken on an empty stomach and

in fact, it will absorb better on an empty stomach, which makes it convenient

for away from home times.

You mention that on days that you only have calcium,(? I'm unclear if you meant

OJ along with your Rocaltrol or OJ alone) you feel better. It IS possible that

you could be experiencing a calcium level that is too high~! By the time you are

vomiting it is usually fairly high. Are you being followed by an Endocrinologist

and can you have your calcium level checked? That would be where I would begin.

Please feel free to write privately: ldonaldson@... and also to join our

online HP support group at http://groups.yahoo.com/group/HPTH and... you can

find a website that is entirely devoted to all forms of hypoparathyroidism at

http://www.hypoparathyroidism.org

I was told I was left with 3+ parathys but none of them worked from 3 days post

TT.

A COMMON MISCONCEPTION: Dairy in excess is conterproductive as a source of

calcium for HP patients. All dairy is also high in phosphorous and will

decreaase the amount of calcium in your blood.

Hope this helps,

> According to the pathologist I am left with 1 parathyroid gland after my total

thyroidectomy. Three days after surgery I had to be rushed to the emergency room

because my entire left side had gone numb. My body just wasn't holding calcium.

The docs increased my calcium dosage and added Rocalcitrol (vitamin d). Here's

my problem, the calcium pills are now making me incredibly sick. My stomach

hurts so badly that I can hardly function. I throw up all the time. I talked to

the doc and she said I could switch to other forms of calcium.

> Problem is that I'm on the LID which leaves me with Calcium fortified orange

juice. It takes 1/2 gallon a day to get enough calcium. On the days when I just

drink the orange juice I feel great. My husband has even ground up calcium pills

and cooked them into my food. I still get sick.

>

> I have tried every calcium pill on the market. I can't have dairly because of

the LID. Even once I'm done with LID it will take incredibly large amounts of

dairy and orange juice for me to get all the calcium I need. I am faced with the

daunting fact that even after the RAI I am going to feel awful because I will

still be taking all this calcium. Can anyone offer any suggestions?

> c_demartini@y...

[Guest guest]

One more thing...

When I am hypo, my doctor decreases the amount of Rocaltrol (calcitriol) that I

take because a slowed metabolism will make the calcium level rise. Please ask

your doctor to check your calcium level ASAP.

And to clarify the dairy issue: A cup of milk or the equivalent in dairy/daily

is OK. Moderation is the key here.

(GrammyD)

[Guest guest]

Thanks for the info but I think I wasn't very clear.

The calcium pills themselves make me sick by irritating my stomach

lining. Doesn't matter which pills I use (tums, calcium carbonate,

calcium citrate, etc.) or if I take them on full or empty stomach.

The result is incredible stomach pain and nausea.

If I get the calcium naturally from food I'm fine. But enough food

to get the calcium is just too many calories in a day. (Several

thousand too many since I can't have dairy).

My calcium levels are checked every few days. They are fine as long

as I get the calcium supplements.

c_demartini@...

> One more thing...

>

> When I am hypo, my doctor decreases the amount of Rocaltrol

(calcitriol) that I take because a slowed metabolism will make the

calcium level rise. Please ask your doctor to check your calcium

level ASAP.

>

> And to clarify the dairy issue: A cup of milk or the equivalent in

dairy/daily is OK. Moderation is the key here.

>

> (GrammyD)

[Guest guest]

Hi,

I had my TT and parathyroidectomy on May 8th.I was left with only

one parathyroid gland also. I had the numbness and tingling also and

went to the ER two days after coming home. They told me to just

increase my tums consumption because my levels were low. I am now

taking 2 calcitriol once a day along with three tums X three a day.

I still have times when the tip of my nose will feel tingly so I

just make sure to chew a few more tums for the next few day.

I am currently on day 5 of LID. Before starting I wasn't sure

about continuing the calcium supplement due to being told to hold

off on all dairy products. I emailed the dr. office and asked them,

they said yes to continue. You hadn't mentioned tums in your post so

I thought I would suggest them. The red dye in the flavored ones is

okay. It isn't #3.

I am sorry you are feeling so bad. I hope they can get your

levels in control very soon, so you can be on the road to feeling

great!!

Donna

TT-5/8/02

Confirmed papillary and medullary 5/14/02

Lid-6/9/02

RAI-6/26/02

> According to the pathologist I am left with 1 parathyroid gland

after

> my total thyroidectomy. Three days after surgery I had to be

rushed

> to the emergency room because my entire left side had gone numb.

My

> body just wasn't holding calcium. The docs increased my calcium

> dosage and added Rocalcitrol (vitamin d). Here's my problem, the

> calcium pills are now making me incredibly sick. My stomach hurts

so

> badly that I can hardly function. I throw up all the time. I

talked

> to the doc and she said I could switch to other forms of calcium.

> Problem is that I'm on the LID which leaves me with Calcium

fortified

> orange juice. It takes 1/2 gallon a day to get enough calcium.

On

> the days when I just drink the orange juice I feel great. My

husband

> has even ground up calcium pills and cooked them into my food. I

> still get sick.

>

> I have tried every calcium pill on the market. I can't have

dairly

> because of the LID. Even once I'm done with LID it will take

> incredibly large amounts of dairy and orange juice for me to get

all

> the calcium I need. I am faced with the daunting fact that even

> after the RAI I am going to feel awful because I will still be

taking

> all this calcium. Can anyone offer any suggestions?

>

> c_demartini@y...

[Guest guest]

does anyone know the signs of hypo calcium? and hypo and hyper thy ?

many thanx

Jolie/ca

[Guest guest]

Your situation is just like mine was when I lost three

parathyroid glands during my TT in December, so I

empathize and sympathize with your situation.

I had my surgery in NY and I live in Maine, so my endo

is here in the great north. When I was in NY, my

surgeon prescribed my post TT calcium, which was

simply a lot of calcium carbonate everyday. As you

have already found out, it ripped my stomach to

shreads and I stopped taking them. I felt awful.

Then my calcium plummeted and I got really sick.

What worked for me and finally brought me back into

almost normal range was heavy on the calcitriol - my

endo prescribed me to take 4 .25mcgs a day with

1800mgs of calcium carbonate. All that calcitriol is

the only thing that worked. Little by little, I was

weaned off and now, 6 months after surgery I am down

to 2 .25mcgs calcitriol a day and a few calcium

carbonate pills which I am weaning off.

When I got back to Maine after the big calcium issue,

it was the most nauseous I have ever felt in my life.

I thought that my stomach was going to explode. I

couldn't even lie down I was in so much pain.

I feel great now, and with a little extra dietary

calcium, I am slowing weaning off my calcium so that I

hope to get it down to 1200mgs a day. That small

amount doesn't bother my stomach at all.

Hang in there. I hope you have the same success I

did. Remember, this calcium situation does not happen

overnight and was probably the most difficult thing to

deal with in this entire experience. I think that

time will tell and hopefully, heal. As for how to get

calcium while on the LID, I drank the OJ too, but

there is only so much you can have. Good luck, I just

wanted you to know that it does get better.

Pattie

=====

Dx Familial Pap Thyca, Hashimoto's Thyroiditis - 11/01

TT - 12/20/01

RAI 150 mCi - 2/12/02

__________________________________________________

[Guest guest]

I am hypoparathyroid too - Feb 2002. I was very sick until I went to a

specialist at a large hospital out of state. Please email me and I will tell

you all the details. I went 2 weeks ago with my face burning and numb and sick

at my stomach and I am so much better it is unreal. The Rocaltrol is the

important part of the medication and then to add calcium to it. I cannot take

Tums calcium it makes me as sick as can be - I have the heaves. I am on the

following:

Breakfast - finish meal then take 2-25mcg Calcitriol (generic Rocalitrol) and

1000 mg Calcium Citrate (Caltrate is the name brand) and it has 500 IU of D3

I do this at 7:30 am

At 11:30 am - I take my Levoxyl .150 with a tall glass of water

At 12:45 - I have my lunch

At 3:30 - I eat a snack then 1 - 25 mcg Calcitriol and 1000 mg Calcium Citrate

with 500 IU D3

At 6:00 - I have dinner

At 10:30 pm - I have another snack and take 2-25 mcg Calcitriol and 1000 mg

Calcium Citrate with 500 IU D3

I have had ulcerative colitis and even when my serum calcium was in the low to

mid normal range - I was symtpomatic. The reason being is that I was not

absorbing the medicene correctly - my body. My ionized calcium (the part that

the body feeds the muscles and nerves on and the important draw instead of just

serum calcium) was below normal. My new doctor doubled all my meds just 2 weeks

ago. My serum did not rise but .2 but my ionized came up into the normal range.

Have your doctor run the following tests:

Serum Calcium

Ionized Calcium

Phosporous (the disorder makes this go up - almost all foods have phosporous)

Vit D 1.25

Vit D .25

Magnesium with some patients

Run these tests to start - all of these can get off track with this disorder.

A month ago - I thought I was going to die and even prayed at times to. This

disorder effects your entire body and even your mind. The blood counts and your

symptoms must be closely monitored.

Also get your endo or internal med doctor to give you a script for a standing

order for serum calcium, phosporous and Ionized Calcium. I have one so that if I

have a medicine change then 3 -4 days later I can check to make sure that I am

still in the normal levels.

If you have bad symptoms then something is wrong, some number is not in line on

these tests.

Milk is NOT a good way to get your calcium. It is very high in phosporous and

can drive the calcium count down when you are unstable. I myself have had zero

of it and once or twice a week I splurge with cheese.

Things high in phosporous: Colas, Milk, beans, soy, fish and chocolate

I still pay like the dickens when I indulge in fish. The next day I feel

horrible. It will take my body time to level off and add this back to my diet.

Please pay attention the the way that you are taking your medication. Calcium

is best taken 4 hours apart from the thyroid medication. It must be taken after

a meal. When you eat and food hits the stomach - the juices in your stomach

start flowing to break down the food - calcium binds with the food that you

take. Take the calcium right after you finish.

Also, you might be having a side effect of the Rocaltrol.

From the physicans desk reference: More common side effects that occur early:

Vomiting is one of them

Try having your doctor switch you to Calcitriol - it could be the dye in the

pill - just a hypothetical there.

I get Calcium Citrate (Caltrate is the name brand) with D3 added. D3 is

different Vitamin D than Calcitriol. It is an extra but not a replacement for.

You can have some milk more when you get stablized but do not try to get your

calcium this way.

Please contact me at my email address jglsmokeymtns@... and I will tell you

who I saw - they take a lot of insurances and are very very good. I will also

be more than happy to correspond with you and provide any information to any

questions that you have.

Please go to www.hypoparathyroidism.org and register it is free and it will link

you with patients like us. Also please join the yahoo HPTH group, we have many

people that post their and a wealth of knowledge including a great endo from

Harvard that is a real educator.

I will be happy to help anyway that I can.

Jana

[Guest guest]

Hypocalcemia and hypothyroidism - I can explain those but not hyperthyroidism

since I did not have it.

Hypothyroidism - very cold, tired, weak, problems with my thinking and planning

Hypocalemia - numbness, burning of nerve endings, muscle spasms and weakness,

chest spasms - felt like a heartattack.

I hope this helps -

Jana

Re: major calcium problems

does anyone know the signs of hypo calcium? and hypo and hyper thy ?

many thanx

Jolie/ca

[Guest guest]

--Collared greens are a good dietary source of calcium. On a per serving basis,

they are higher in calcium than the fortified orange juice. On the LID, you

would have to cook them yourself. Off the LID, you can buy them canned.

Blackstrap molasses is a good food source for calcium as well, almost as good as

the greens and the fortified orange juice. I know that molasses is forbidden on

many forms of the LID and I know that no one has been able to find the reason

for its forbidden status.

There is probably a designer bottled water with calcium added.

You may have to choose between strict adherence to the LID and keeping your

calcium levels up. It would seem to me that the LID could be better fudged than

your calcium levels. There may be a better solution that your doctor could

suggest.

hurthle cell ca

M

>

[Guest guest]

How hypo are you? I had a very similiar experience after my TT and RAI (severe

stomach pains ... vomiting 6-7 a day) and thought it was related to my calcium

intake. My pain was apparently related to my hypo state because as my TSH came

down, the pain lessened. My doctor had to prescribe promethazine for 6 weeks to

keep me from vomiting.

The strange thing is that I never experienced the same problem this time around

while going hypo for my yearly scan, even though my TSH level reached a high of

over 400! You might ask your doctor about promethazine ... it helped me keep

food and liquids down and helped to alleviate some of the pain.

By the way, my parathyroid function never returned and I remain on 1000mg Oscal

and .5 Calcitriol (Rocaltrol) daily.

c_demartini wrote: Thanks for the info but I think I

wasn't very clear.

The calcium pills themselves make me sick by irritating my stomach

lining. Doesn't matter which pills I use (tums, calcium carbonate,

calcium citrate, etc.) or if I take them on full or empty stomach.

The result is incredible stomach pain and nausea.

If I get the calcium naturally from food I'm fine. But enough food

to get the calcium is just too many calories in a day. (Several

thousand too many since I can't have dairy).

My calcium levels are checked every few days. They are fine as long

as I get the calcium supplements.

c_demartini@...

> One more thing...

>

> When I am hypo, my doctor decreases the amount of Rocaltrol

(calcitriol) that I take because a slowed metabolism will make the

calcium level rise. Please ask your doctor to check your calcium

level ASAP.

>

> And to clarify the dairy issue: A cup of milk or the equivalent in

dairy/daily is OK. Moderation is the key here.

>

> (GrammyD)

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