Endocrinologist or other specialist??

[susiestar]

My reg doctor told me almost a month ago that they would give me Vit D shots to get my levels up. I am in a lot of pain and we (all of the docs and myself) think it is mostly the Vit D deficiency. The pain just doesn't let up. I am miserable and almsot totally nonfunctioning.

The nurse keeps telling me they are "ordering" the medicine, but there is no telling when they will get it in as they don't normally have it.

I talked with husband and we think maybe I should see an endocrinologist - maybe they could help?? We are not sure, but this has gone on for a year and a half (when we first discovered the deficiency and started trying various supplements and other ways to get some vit D in my system - ALL of them so far make me very very ill - vomiting for days ill).

Is an endocrinologist the right kind of specialist to handle this?? Or is there another specialist I should seek out? We have amazing insurance, no referrals needed and very reasonable copays, so going to a specialist shouldn't be any problem. I just want to get the right one. One that can HELP with this, ASAP.

Thank for any advice on this.

Susie

 

[witzend]

After the first injection or two, I would have your doctor show you how to inject yourself and do it at home with regular tests for blood levels. It seems like any GP could do this for you, or maybe a homeopath? I'd be reluctant to switch doctors, though if it has taken you this long to get this far.

 

[mom_in_training]

My daughter had her whole thyroid taken in Feb 2008. I am no expert by any means but I did learn that it is the Parathyroid that produces calcium. If the Parathyroid gland is not functioning properly then that very well could have something to do with vitamin D deficiancy. When my difficult child forgets to take her synthroid and calcium she will start feeling really tired as well as experience allot of cramping especially in her legs. Painfull cramping is a classic symptom when someone is lacking calcium. Geeze she had some major cramping going on the first evening following her surgery. Her back and her legs. Of course her body had to adjust to no longer having a thyroid as well as the major surgery that she had but it took a lil time for her calcium levels to stabilize. Her Parathyroid gland thank god was unscaved during surgery verses her thyroid was being taken over by a 9 CM mass. If you would like some links to some groups just PM me and I will gladly pass them on to you.

 

[Abbey]

Gosh...I have no knowledge on this. I'm just sorry you're in so much pain and hope you get some help.

As far as giving yourself injections...I'd faint at the thought if I had to do that. When they show needles on TV, I have to turn my head. I'm a wimp.

Abbey

 

[flutterbee]

Yes, I would see an endocrinologist. There could be a parathyroid issue or something else. You need to determine why you're so deficient. I know you've mentioned not drinking vitamin D milk, but we get most of our Vitamin D from the sun. Foods are not fortified with enough vitamin D to compensate for that.

If you're getting sun on exposed face, neck and arms WITHOUT sunblock for 10 minutes a day and you're still deficient, I would be wanting to make sure there is no parathyroid or other issue going on.

Vitamin D deficiency is associated with may things besides fibro, such as MS, lupus, RA, etc. Some think it may cause those illnesses while others think it's because of those illnesses.

This explains the parathyroid issues:

http://en.wikipedia.org/wiki/Vitamin_D

This study casts doubt on the effectiveness of supplements:

http://www.sciencedaily.com/releases/2008/01/080125223302.htm

I have to tell you...I felt no different when my vitamin D level was at 4 then I do now that it's at 45. In fact, when I took the supplements I had horribly intense headaches and searing bone pain that stopped when I stopped the supplements. Could just be a coincidence, but who knows.

 

[Marcie Mac]

Susie, one of SO's problems is crampling, legs, arms, hands - and its bad. when he starts with the cramping, its ALWAYS turns out his potassium levels are non existant, and no one knows why, cause lord knows he eats everything with potassium in it.

SO just after two years finally got the ok from medi cal for some kind of daily calcium shots that is supposed to improve bone mass, something that the predisone cannot **** up as soon as it hits his system. I'm with Abbey on the needle thing - much as I love him to death, the nurse has been in for the past two days showing him how to do it himself. She wanted me to stand and watch, but I don't think I would be a lot of help after I fainted dead away and was on the floor..

Sometimes you have to be a squeeky wheel to get things moving - I would be on the phone like white on rice if you are supposed to be getting this stuff and the nurse is blowing you off

Marcie

 

[Fran]

Susiestar, my experience is that if you make an appointment. with a specialist and then tell him the diagnosis he will be resistant. Tell him what the doctor's have told you then, give him your records, tell him your symptoms and let him make the diagnosis and suggestions for treatment. doctors. seem to get really ruffled if they are "given" a diagnosis by a patient.

Go to the specialist. At the very least you will know you got all your bases covered.

 

[DammitJanet]

Ugh....love my doctor to death but when I requested my Vit D levels checked last friday he told me that was something they cant test for! He did say I could take a calcium and vit d combo pill though. Sigh. At least I got them to test for my hormones and cholesterol...

 

[susiestar]

I called ALL the endocrinologists on the insurance list this morning. None will take a patient with-o a doctor referral.

I am going to make an appointment with my regular doctor this week to find out what is going on. The nurse is making me nuts.

I would LOVE to find out why I am so deficient. My body does not want me to take Vit D orally - I get very sick. I have tried and tried to take the supplements and I end up so sick, even with anti-vomiting medications (tried phenergan and then zofran!). I even get very sick if exposed to much sunlight. My skin gets a very strange plastic like texture and I end up very ill.

The doctor thought shots for this would not be a problem to get. And I can easily give myself shots - doesn't bug me at all. The kids get all upset if I don't let them watch, LOL!! I have to GET the medication first.

The rheumy's nurse said to have the reg doctor do the referral because their referral person won't even get to the order for 3-4 WEEKS! Then it will be a 2 month wait for the appointment according to the endocrinologists' offices. I asked.

This is so frustrating. We ahve been trying to treat this for a long time. I want to get the medication and see if it will work. As to why my body isn't making/using/accepting the vitamin, those answers would be nice too.

And I would like to quit being an "interesting" patient for my docs. I really would.

Thanks for the support and advice.