Symptoms of Hypercalcemia

Hi all,
I'm new here. I was sort of diagnosed a few weeks ago after 15 years of symptoms, pain and crappy doctors. I had an MRI done in May and the doctor said there were at least 18 lesions in the white matter of my brain. He said it was one of the worst Mri's he'd ever seen. He then sent me to a rheumatologist who ran tests... ana, anca, lupus, CRP, and Sjogrens....All normal, except CRP, slightly elevated. The Rheumatologist then asked what the nuerologist thought and I said he mentioned maybe sarcoidosis and he said (i swear he said this exactly), Well, I guess you have sarcoidosis. And that was it. He gave me methatrexate and folic acid prescriptions which I am not taking yet and have no intention to until I find another rheumatologist preferably one with a brain. Anyway, my question is this, lately I am severely exhausted, and I feel foggy, like I cant focus on anything and I could just pass out at any moment, though I havent yet. Over the years, several of my blood test have come back with high calcium though none lately. I also have had kidney stones for the last few weeks, (first time ever) and all kinds of hard swelling in my joints. I have little knots that are hard as rocks in my hands, elbows, knees and feet. The knots on my elbows stick out horribly and my knees look twice their normal size. I am seriously starting to look deformed. My hair is also falling out by the handfuls and I am NOT taking any medication. I am also itching really bad. It wakes me up practically every night and I'm not sure if the marks on my lower legs are from some sort of rash or me itching like a crazy person while Im sleeping. And theres the headache that I've had for 4 weeks straight. No break at all. I have tried aspirin, Tylenol P.M. and even Dramamine and nothing works. Last nite and tonight just before bed I have felt like throwing up, but I havent yet. I have an appt with my regular doctor on the 5th and I am trying to hold out though I have felt like I needed to go to the ER several times in the last few days. Does this sound like hypercalcemia or should I just wait it out? Also, has anyone else gotten these knots or cysts and do they go away? Is it possible to have the knots biopsied so that I can get a proper diagnosis? I have had a chest xray but it shows nothing so that only leaves my brain lesions and a little cyst on my liver which I have no intention of having biopsies on. I'm so confused.

By priscurl
Posted July 30, 2008 at 4:21 am
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Hi flowersurfs and welcome,

My oh My! You have had a time of it.

Several things you mention sound just like hypercalcemia.
Feeling foggy, itching, not to mention kidney stones and hard lumps under the skin. It rearly scares me that you can get into such a state and your doctors have allowed it. Next time you feel like throwing up, i would advise you to get straight to emergency. Hypercalcemia can be caused by things other than sarcoidosis. To get a correct diagnosis you may need to have something biopsied so you can have the necessary treatment. Are you constipated? thirsty? lethargic? weak in the muscles? These are other symptoms which can arise with hypercalcemia. Have you ever had your 1,25 OH D and 25 OH D levels done? Also are PTH level would need to be done.
In the mean time, you could make sure you get less calcium and vitamin D in your diet. Steer clear of oily fish, egg yolks and dairy products. Don't eat too much ViT D enriched cereals or margarine. Stay covered up and out of the sun. Apart from the lesions in your brain, excess sun can trigger migraine in people with hypervitaminosis D or sarcoidosis tending toward hypercalcemia. Good luck in seeking medical assistance. Sounds like you need it. All you Christian member, prayers for Flowersurfs so he can obtain the right diagnosis and treatment.
Best Wishes
Pris

By coqui513
Posted July 30, 2008 at 4:32 am
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Hi,

Everything you describe sounds just like, or very close to my symptoms. I was diagnosed with Sarcoid a year ago by way of a lung biopsy. The Prednisone helped. I was tapered and taken off the Prednisone and the the condition in my lungs returned, so I am back on the prednisone.

I hope you get the correct diagnosis soon so that you can get the right treatment.

Many blessings,
>Ana<

By priscurl
Posted July 30, 2008 at 6:40 am
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Hi FS,

Just another thought. You mention a rash on your lower legs that is itchy. Is it sore?

In sarcoidosis there is a common rash, usually on the lower legs called erythema nodosom. It can be red or purple and can look a bit like a bruise, but they don't resolve as fast as a bruise.
Check out this http://en.wikipedia.org/wiki/Erythema_nodosum

but also these pics. http://images.google.com/imgres?imgurl=http://www.medscape.com/content/2002 /00/44/03/440356/artdoj440356.fig7.jpg&imgrefurl=http://www.medscape.com/co ntent/2002/00/44/03/440356/440356_fig.html&h=466&w=400&sz=35&hl=en&start=15 &um=1&tbnid=0bhys3ipdq2sDM:&tbnh=128&tbnw=110&prev=/images%3Fq%3DErythema%2 Bnodosum%26um%3D1%26hl%3Den%26rls%3DRNWE,RNWE:2006-17,RNWE:en%26sa%3DN

Or search Erythema Nodosum in Google Images.

Have you had a chest x-ray. Usually a chest x-ray is part of a sarcoid workup.

If the pics look like your rash, you must get a chest x-ray done.

Pris

By flowersurfs
Posted July 30, 2008 at 9:39 am
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Hi Pris,
And thank you. I have had a chest xray and my rhuemotologist said it was normal, though I have also had Chostcondritis over the last 15 years several times as well as 2 severe respiratory infections just in the last year that the doctors felt were pnuemonia. I have also had chronic sinusitus as evident on my mri's for the last 15 years! Seriously! It isnt always evident but sometimes my nose will just run for days at a time and then stop just as suddenly. All clear fluid. Funny you should mention constipation, I had it so severely in March that my doctor thought I had an obstruction. I had a colonoscopy and endoscopy in April and was diagnosed with gastritis and 3 ulcers and a possible motility disorder thought the gastric emptying test was not completely abnormal. The gastroenterologist told me to take miralax and prilosec every day and a laxative once a week and that should fix me.....can you believe that? Also since March, I have had to get up at nite to pee at least 4 or 5 times. That's alot considering I only sleep 5 or 6 hours. No one can tell me why that is happening. I have also had thyroid and pituitary issues which is how this all started. They said it was a 'swelling' in my pituitary and hypothalamus but that it has gone down now....now I just have lesions in the white matter and still chronic sinusitis. The rash does not look the pictures although I do have those spots on my legs, but they arent the ones that itch. The ones that itch start out as very small red dots, then they itch and then they bruise. The hardest part of all is the exhaustion and brain fog. I have to work in order to afford the insurance so that I can visit the doctors who so far havent been able to help me. It's an endless cycle of complete frustration. Sorry for sounding negative. I think part of the problem is that I have always been very athletic. I used to run everyday and I ski and surf and so most of the doctors in the beginning would say that my body fat was lower than most women my age and that was probably my problem......then they just started referring me to psychiatrist which I tried but all 3 told me it wasnt in my head....I'm rambling now, sorry. Guess I'll know a little more on the 5th, hopefully....

By cbestwick
Posted July 30, 2008 at 12:09 pm
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Hi flowersurfs, I do not have an official diagnosis yet either, although, I have had everything except the biopsy. I feel like crap most of the time and have experienced many symptoms you have. My doctors don't put everything together. I wish they could all sit down at a table with me and seriously listen! I didn't think anything of the constipation until i was reading up on sarc. The only thing so far that relieves some of my symptoms, including constipation and headaches, is the prednisone 30mg. My pulmonologist hates to put me on it but it is the only way I can get out of bed in the morning and function. I feel guilty all of the time because I'm not the person my family and friends once knew. I think I'm going crazy half the time.
Cristy

By countryboyjason
Posted July 30, 2008 at 4:56 pm
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flowersurfs i have the same hypercalcima prob as you and none of my doctors seem concerned about it but i think its a big part of my problems. I was diagnosed with out a biopsy with sarc months ago and am no where im not working because of my brainfog is so bad and now im out of insurrance and cant get it with out paying a big deductable and about 500 bucks a month. im basically screwed/stuck and no doctors left to go to but sorry the point of this is you have to hang in there and think positive and trust me i know its REALLY REALLY hard to do but ive been trying to think positive and hope and pray one day SOON they will find out what is wrong so hang in there its frustrating because its like they really dont care and realize but one day we will all look back and laugh at all of this hang in there!

By flowersurfs
Posted July 30, 2008 at 7:32 pm
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Thank you Ana. How are you? Is the sarcoidosis in your lungs only? I am so confused by this disease and how it is so different yet the same in so many people....

By coqui513
Posted July 30, 2008 at 8:26 pm
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Hi Flowersurfs,

Yes, the lungs is the most prominent one, that is why the pulmonologist is following me. It may be other places (one of the CT Scans some time back showed the spleen and it too was covered with nodules), but the doctors tell me, when I inquire, that the Prednisone will take care of it where ever it is.

I can't complain about my doctors though, they are all very concerned. One thing, though my chest x-rays always come out normal. Only the CT Scans show what is really going on with my lungs, and of course, it is not safe to have too many of those. I have a double whammy too, as I also have HPS, which is another condition that affects the lungs...pulmonary fibrosis is the end stage.

You take care of yourself.

All the best to you.

Hugs,
>Ana<

By flowersurfs
Posted July 30, 2008 at 10:23 pm
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Hi Cristy,
I certainly know the feeling of having friends and family think your going crazy! Until I had outward symptoms that were visable, i.e. bone cysts, did anyone in my family really take me seriously. Thank God my husband is supportive.
Take good care,
Flower

By priscurl
Posted July 31, 2008 at 8:21 am
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Hi flowersurfs,

The picture you present sounds typical of many of the problems people with sarcoidosis have. Your doctors are treating symptoms and can't see the wood for the trees. What I think you need to have assessed is your ionized calcium level. Included should both types of vitamin D and a PTH. You should also be assessed for Diabetes Insipidus which is sometimes present in people with sarcoid. A prolactin level would also be useful. I hope Paradox reads this. I am not a physician, but have read lots about sarcoidosis since I was diagnosed 9 years ago. You don't mention thirst. If you had a severe thirst it could throw up the possibility of both Diabetes insipidus or hypercalcemia. The other picture you paint of thyroid and pituitary problems, sinusitis and fatigue is also frequently encountered by people who have, or turn out to have, sarcoidosis. I myself have suffered severe sinusitis since my teens, later migraine was added to the picture. I was diagnosed with a pituitary adenoma in my early 20s, and have had to take oroxine for a malfunctioning thyroid since my late 20s. At the same time, I discovered I had microhematuria which has persisted right up to the present. I still have fatigue and enthesitis problems. Very often people with sarcoid, lyme, CFIDS have been high achievers in the mental or physical field before being struck down by an illness that stops them in their tracks. I am so very sorry you have to carry on working just to pay the docs and insurance. We have a kinder welfare state operating in Australia. Now while this might have its drawbacks for taxpayers, and there will always be people who rort the system, I for one am grateful that while I am really ill, and undergoing radical treatment, I don't have to support myself. I am hoping I may be able to in the next couple of years. As I get better, I hope to study for another degree to futureproof myself. Keep on fighting for your health. I do hope you find a doctor to help you find a diagnosis soon and treat the illness you seem to be suffering. Remember, it is your body, so stand up for yourself to the docs. Read as much as you can on your symptoms and question them if you have to, or make suggestions. A doctor spends only 10mins or so with you. You know your own body better than he does, and doctors sometimes make a quick decision upon hearing one or two things from you. Just today, I saw a story on a television presenter/vet. Knowing the dangers of prostate cancer, the TV vet had a PSA done every couple of years. Every time he had the test done he got a consistent result of around 2, 2.2 or whatever. His latest one was 4.2. His treating doctor was not at all concerned about it. Dr Harry, as he is known, decided to seek a second opinion. This led to a diagnosis of prostate cancer. This is a lesson to everybody to know what your results are, you have a right to them; you paid for them. Keep a record, listen to your body, and realise you are the expert on you; not the doctor.

Pris

By sickofbeingsick1
Posted July 31, 2008 at 11:38 am
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Symtoms of hypercalcemia? Have you had blood draws to check your calcium levels and creatine for kidneys? I have serve hypercalcemia/ my cal ranges from 13 to 15 all the time creatine 2 to 3.2, They removed a couple of parathyroids to test last year even know my pths test were always normal.. It took over a year for them to fique anything, 152 days in and out of the hospital.... fighting the symtoms because they didnt know what was wrong, Last nov at Mayo clinic one of my doctors wanted to do a liver biop.
Said my liver was full of sarc. but all my ct, ultra sounds, liver func test come back normal and scans look good, how could that be? Loaded me up with meds

Prednisone 60 aday
Cytoxin 150 aday
bactrime 800 aday
Hydroxychloroquine 200 twice aday
Ketoconazole 200 twice aday
Solu-medrol 250 thru my picc 3 times aweek
hydrate 3 liters of saline fluid thru my picc 3 times aweek.

I also been on methotrate, Imurane, and acouple others.
I guess what I'm trying to say is even after all this and all the doctors I seen I still feel the same... try the meds it could help you feel better , you wont know if you dont try.
Still to this day I dont think they really know what their doing since there is not one plan that works, it's differnt for everyone. I'm starting remicade next week my doc say's he can see the light at the end of the tunnel, I'm still looking for the tunnel.
some days are good some are not.
I just keep on Rollin.

By priscurl
Posted August 1, 2008 at 4:59 am
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Hi sickofbeingsick,

I am so sorry your physicians took so long to figure out you had hypercalcaemia.
I doubt that Remicade will help with the problem. It may help the sarc which will mean less output of 1,25D from your granulomas, therefore less calcium going into your blood stream.

The hydroxychloroquine, ketoconazole and prednisone are all drugs used to bring down calcium levels.

Ketoconazole is liver toxic, so make sure they test for liver function regularly, particularly if you have sarc granulomas too.

Flowersurfs, this is a prime example of what can happen if you don't push and insist certain blood paramaters are checked.

Good luck and best wishes to both of you
Pris

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