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Old 06-04-2007, 07:11 PM   #1
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sarcoidosis

hi all - my doctor called today and said my D was again low. Now he wants me to take 1200 IU per day. I am the one who has been having extreme thirst....what I finally figured out is that everytime after I take Vit D and calcium I get raging thirst that I cannot satisfy. Then 2 hours later I pee and I see this stream of white flowing into the bottom of the toilet. I think its all the calcium that I am peeing right back out.

Today I stumbled upon a disease called Sarcoidosis - its rare but i think I have it. I get extreme chest tightness alot after being in the sun and short of breath. I also get severe migraines. In Sarc. your vit 25,D is low and your 1,25 D is high. The merck manual says 1,25 D should be no higher than 45. Mine was 58 when they tested it (actually I was the one who added it to my docs script because I was suspicious). Anyhow, if you have Sarc. you have to not take any D at all and stay out of the sun. I do think this explains my horrid thirst and the cloudy urine.

Does anyone know anything about Sarc? Taking D can be very dangerous if you have this. But my head says don't I need D and calcium? According to the websites, taking D actually worsens osteop. if you have Sarc. I have to make an appt with a lung doctor to test me for this. Oh and my PTH is low despite taking forteo - I think high D also lowers the PTH. So go figure - no wonder I have suffered for over a year - no one thought to test my 1,25 vit level. Why would anyone think it would be high if the other D was low? Makes no sense. Any feedback? Does anyone else get thirsty after taking D? oh and also - sarc causes kidney stones which i have. arggggg!!!!1

Last edited by snowflake11; 06-04-2007 at 07:15 PM.

 
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Old 06-04-2007, 07:24 PM   #2
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Re: sarcoidosis

Snowflake11,
I'm sorry to hear that you have this disease if it turns out that you do. You have diagnosed yourself. Doctor's should take more time with patients when they are suffering from unknown symptoms. Why is your doctor recommending you take 1200 D - did you tell him about your suspicion that you can Sarcoidosis? If it was me I wouldn't take until I've been examined by a specialist. Are you being referred to a specialist? I hope so. I've never heard of this but sometimes I have cloudy urine.

 
Old 06-04-2007, 08:09 PM   #3
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Re: sarcoidosis

Hi Snowflake: I can't remember what type of dr you're seeing but it sure does sound like you need a specialist. I have been tested for sarcoidosis many times, and it was always normal. They tested me because of my elevated Ca test's. I have normal PTH, TSH, T3 T4, FSH, but slightly high Ca. The test they can do is a blood test called an ACE test. My Endo ordered this when he was trying to rule out granulomas (sarcoidosis), plus I had various cancer tests, I didn't need to see a pulmonary (lung dr) for this. Actually any dr can order it, but probably won't unless they think it's warranted

I don't have your symptoms, but they should test you for this an others. I'll get back to you on all the blood tests etc I had, when they were trying to figure out the cal prob.

My urine tests are always fine, and btw I don't have sarcoidosis.

 
Old 06-05-2007, 04:33 PM   #4
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Re: sarcoidosis

hi desert, did you ever have your 1,25 vit d level checked? if so, what was it and what was your 25, d? if you have sarc the paper i read says that the 25, d is below 25 which mine is, and the 1,25 d is above 25 which mine is 58! i am hoping to get into johns hopkins in about 3 weeks. they out me on a waiting list. i agree i need a specialist. i will be seeing my primary on friday and will ask for an ace test. but from what i read - that can be normal in sarc. i didn't take any vit d today and lo and behold! i have not been thirsty!!!!!!!!!!!!!!!!!! yesterday i was crying it was so bad and today its a miracle. for some reason i don't think i can take vit d. so now i worry about my bones, but if you have sarc it says that taking d can actually cause osteop. go figure! and you have to stay out of the sun. when i am in the sun my chest gets tight, so for that, and other reasons like the d and the thirst, I am self-diagnosing. it seems to all fit. i hope its not this because the cure is steroids. i'll keep you posted. if you know anything else about sarc or how to treat it, do post!

 
Old 06-05-2007, 07:55 PM   #5
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Re: sarcoidosis

Hi Snowflake: I'm really glad you're getting into Johns Hopkins, excellent choice, one of my drs graduated from there. I also get there newsletter which I find very interesting.

Yes I've had all the D tests, and they were always normal. The only thing I ever had elevated, was the Ca. They check for sarcoidosis, when they think you're hypercalcemic. Before I had the test, I didn't know anything about it, and truthfully I still don't since I don't have it.

I haven't heard anything about the ACE test not giving you a diagnosis or at least a preliminary one, since I don't know much about it. I'm still waiting to see another specialist about this calcium thing, and I don't have my appt yet. I'm going to Loma Linda Univ to see an Research Endo there. I'm currently seeing LLU's Mineral Metabolism Dr at the Osteo Research Clinic for my bmd. I'm racking up too many Drs it seems because I'm getting real tired of it.

I hope you can figure out the thirst prob, did you say that you were checked for both of the types of diabetes? When I was reading the symptoms of diabetes insipidus (water), it sure sounded a lot like your thirst probs, but I believe you said you were checked for "both" kinds of diabetes-insipidus & glucose-correct?

I hope you figure it out

Good luck, I'll have to look up those D levels for you, but they were normal.

Last edited by DesertBloom; 06-05-2007 at 07:59 PM.

 
Old 06-05-2007, 11:12 PM   #6
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Re: sarcoidosis

Snowflake- I too am so glad to hear that you will be going to Johns Hopkins to see a specialist . I hope that the dr. will be helpful to you in arriving at a diagnosis.

It sounds like it has been an enormous burden for you to bear. Remember to take good care of yourself during this difficult time. When I went to Mayo last year I was really stressed out and at the end of my coping abilities. Try not to let this happen to you. Know that your friends on this board are thinking of you and wishing you well.

 
Old 06-06-2007, 10:41 AM   #7
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Re: sarcoidosis

hi osteo - yes, a burden. but i do beleive it is making me stronger. my latest pth test was <2.5 !!!!!!!!!! normal 14-72. my pth has been dropping steadily since being on forteo - it started at 36. now i'm severely hypopara. not sure if this is good or bad. do you know? my calcium was 10.1. i sure hope hopkins will figure it all out for me.

 
Old 06-06-2007, 02:39 PM   #8
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Re: sarcoidosis

Hi snowflake- I don't know about the pth issue. Two months before starting forteo my pth was at 35(range 11-67) . Five months after starting forteo my pth was 26(range 12-65). So there is a drop. Probably I will have this checked again in a few weeks. I wonder if it will continue to drop like yours. That would be curious wouldn't it?

A recent blood test showed a decline from mid range to bottom of range on rbc, wbc, hemoglobin, hematocrit. (My b12 and folate levels ok) This is 8 months into forteo, and I am comparing to results two months before forteo. I also have a low ferritin level, and very low d. When I see the dr. in a few weeks all this will be re-checked and discussed. I am thinking the low rbc , hemoglobin, hematocrit are all connected to the low iron. I am taking iron supplements now and have been for several months. Also on the d I am now taking supplements. I was checked for malabsorption, celiac etc with upper endoscopy- I am ok on that. I have no symptoms of fatigue etc. I am not feeling great with the thyroid medication and it had to be upped recently because the iron supp caused the thyroid med to be less effective. Iron and thyroid meds interact. When thyroid dose upped it caused kind of a metabolic instability causing kind of hyper symptoms for me including racing pulse , headaches , kind of an overly caffeinated feeling - and I don't have caffeine and I don't like the feeling at all.

The wbc was at bottom of range , when wbc was mid range 9 months ago. This has me concerned. Also the bottom of range stuff on the rbc etc. when all was mid range 9 months ago. All this stuff was ok then , not ok now. Forteo and thyroid medication are both new in the picture. Is there a connection-I wonder? I never heard or read of thyroid med causing these drops,which has me thinking mostly about the forteo or perhaps I am just falling apart. As I said though , I don't feel fatigue .

Before forteo and after forteo I am running high on calcium. Sometimes high on ionized calcium. The forteo did push the calcium slightly out of range and the dr. had me cut calcium intake by a third. Test after that had calcium more in range but above mid. So, I don't know what this is about either but the endo doesn't seem overly interested in the calcium.

That's my situation in a nutshell. Oh, I did have extreme thirst after taking a high dose of d 50,000 for the first time. I haven't had that again.

DesertBloom- if you happen to read this and have any imput would you let me know.

Snowflake- I shared my situation with you in the event that it might in some way , shed some light on your situation. Maybe there is something to the possibility that forteo may affect pth level. I'll follow up with more on the pth after it is checked again. Also if there is anything else that could possibly help I'll let you know.

Forteo must be a very powerful drug to increase bmd so markedly(in some cases). It's not far fetched to think it has system wide implications.

Again, I hope you get clarity and relief from your Johns Hopkins visit! If you need support or a listening ear while your there be sure to post.

 
Old 06-06-2007, 07:22 PM   #9
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Re: sarcoidosis

thanks osteo - it is good to compare stories with each other here. thank you. I will be interested in your next results. i know how you feel about falling apart. drugs have so many side effects. it does seem like forteo does things they may not realize. i have a very low wbc, but it was low before the forteo. however, the PTH drop and now being <2.5 - OMG!!! i have been on forteo since jan. i didn't take it today. i am scared of what else it is doing. i think i want to go back to fosamax. i really have to talk to somebody. my brother died of bone cancer when he was 27 and this whole thing with the thirst and migraines etc. scares me. i will be glad when i get to hopkins. not sure what to do between now and then. i won't have access to a computer so i won't be able to post while there. FYI - I may be gone awhile because i have plans after that, but i will return someday.
i will let you know when i get an admission date. at least we have each other here to talk to. i'm grateful for cyberspace. hang in there.

 
Old 06-06-2007, 10:04 PM   #10
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Re: sarcoidosis

Snowflake- I am wondering whether the pth in forteo tells our system that we have more than enough pth and so we don't release more into our system. If the forteo is depressing our pth that could at least explain part of your symptoms. I hope that DesertBloom pipes up on this , I would be interested to get her take on this idea. Also, she could check her pth levels in lab tests and see if she sees a decline. Anyone else who is on forteo or who was and has their pth information, please let us know if you saw a decline. This could just be more info for you when you go to Hopkins.

I am really sorry to hear about your brother. It all can be so hard sometimes. I really feel for you and what you are going through. You say that you really need to talk with someone and I am sure it would help you . Do you have a friend or close family member that you can confide in? If you don't have someone close to talk with about this or maybe in addition to talking with a friend or family member, perhaps your primary care physician could refer you to a counselor who works with people going through medical issues . I have heard that there are counselors who specialize in helping people cope through medical diagnoses and treatment. God, knows there is a need for such counselors!

Do you want to talk ( in cyberspace) anymore tonight about how you are feeling? Maybe it's already pretty late where you are at. Please let me know how you are tomorrow. I hope that your level of anxiety can go down knowing that soon you will just turn your concerns over to the docs at Hopkins. I too have heard really good things about the doctors there. In fact, why not just release your worries to them now as you know you will be there soon.

 
Old 06-06-2007, 10:28 PM   #11
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Re: sarcoidosis

I was looking back on lab tests that I had before and while taking Forteo to see if mine went down or not. I can not even find results for having my PTH tested. All I can find is for: NTx, Calcium, Vit D, 25 Hydroxy, N telopeptide and Creatinine ratio. I wonder if the doctor just didn't do it. I'll keep looking through my records.

Ok, I found it. I was tested before I started Forteo. My score was 49.8 and the range was from 12-65 so I was ok. It was never tested again so I can't give you any more information about it.

Last edited by taape; 06-06-2007 at 10:35 PM.

 
Old 06-07-2007, 10:02 AM   #12
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Re: sarcoidosis

Taape- Thank you for checking your lab records. I think the docs have followed up on my pth because I also come out with high calcium readings. One of the docs noted on my record -possible evolving hyperparathyroid. So, with that in mind , I believe the pth is checked to monitor hyperpara. Maybe in your situation if there was no high calcium reading the pth wouldn't be watched so closely.

 
Old 06-07-2007, 12:45 PM   #13
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Re: sarcoidosis

it's too bad you didn't have your's monitored Taape because mine was normal too - 36 - before the Forteo. oh well. it remains a mystery. i didn't take my Forteo shot yesterday and have been feeling so incredibly weak and fatigued all day today. can you just stop forteo cold turkey? or now that my PTH is so low am i dependent on Forteo???

 
Old 06-07-2007, 02:06 PM   #14
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Re: sarcoidosis

Snowflake- Hi! What did your dr. say about stopping the forteo? Any change could create an instability in the system that should be monitored. If your doctor agrees with stopping the forteo, you should ask to have a blood test as soon as the dr. thinks appropriate.

I am on thyroid meds and it doesn't take much at all to get instability in the system. When med are increased or decreased blood levels are checked within 6 weeks of the change.Blood levels also checked if another drug is added or removed from your system. So, you could surmise that if you ,under your dr.s advice, changed your forteo regime that you should be checked in a similar time frame. Of course this is just reasoning from an unrelated situation but I would think it would be a good idea even if just to put you at ease.

This is all too complicated to try to change any of your meds yourself. It could be very dangerous. If you haven't done so already, please talk to your dr. before you change your forteo regimen.

Just another bit of information from thyroid medications -when the level of the thyroid hormone in your body is not right- too high, too low it can have vast impact on vital organs like your heart and brain. A person can have impaired thought processes . The impact of what we would think of as small changes to the thyroid can be overwhelming. This is why I say you cannot be too careful when implementing changes.

p.s.I did a search using "forteo" and "hypoparathyroid" and found at a few locations that forteo is in fact given sometimes to treat hypoparathyroid. My thought that maybe forteo would decrease pth production may simply not be so ,even though in my case my pth declined with forteo treatment.

Last edited by osteoblast; 06-07-2007 at 02:48 PM.

 
Old 06-07-2007, 04:50 PM   #15
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Re: sarcoidosis

well i do think forteo has something to do with the decline in PTH - especially since yours decreased too. I am still confused about whether to take it today or not - I hear you about stopping things cold turkey, but if it's messing up my system to take it ...??? what's right? how do you ween off forteo if its a shot? maybe only take it every other day? which means maybe i should take it today.....but i am so fatigued and tired - high calcium causes the fatigue too. maybe the forteo is too much for me so taking it then would be wrong right now. i see my doctor monday - i doubt he'll know what to do either. he's been so cavalier about my symptoms.

 
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