BAD News from the Endocrinologist

[susiestar]

I finally got through to the endocrinologist today. They sent lab results while I was in the hospital and they got lost somewhere.

My Vit D only went from a 6 to a 7. So now we go to 500,000 IU in a shot per WEEK. Instead of half that per month.

It explains why I still feel like crud though.

Also my parathyroid hormone levels are WAY out of whack. doctor says that is just because the Vit D is so low. Now I have something else to research.

And I am TRYING to get one of these docs to run an antimitochondrial antibody (AMA) test to see if I might have the liver disease my mom has. I have a LOT of the symptoms and every doctor seems to go hmmmm and not order it or tell me why they won't. My chances of having this liver disease are greatly increased as my mom has it. And I have a BUNCH of the symptoms of it.

That is my whine for today. I just wanted to cry when the doctor's assistant told me about the Vit D and then the doctor called about it also.

That which does not kill me makes me gritchier. I think that is how it goes.....

 

[gcvmom]

Awww, I'm so sorry you got that news Any explanation why your numbers hadn't improved more than they did?

 

[Wiped Out]

Susie,
I'm sorry. It's o.k. to have a good cry. I hope they will finally order that test for you. I'm continuing to keep you in my daily prayers. Hugs.

 

[crazymama30]

If I remember right you had cellulitis. Could all of that affect your healing abililty and also your body's ability to fight off infection? Not that you can change what is in the past, but just interested. If your not interested then ignore me. Just playing connect the dots.

I hope someone will test you for that liver disease. I hope you do not have it. I hope the vit D shot does not hurt too bad. Hugs, and hope that it helps.

 

[totoro]

I am so sorry for your struggles, good health shouldn't be so much work and such a fight.

 

[susiestar]

Thanks all. Crazymama, I have no idea if there is a connection between cellulitis and Vit D except that Vit D affects pretty much everything, near as I can tell. The vit D shot didn't CAUSE the cellulitis, but it problem slowed healing.

No one has any idea why my vit D is so low and why any source of Vit D that is oral or light based makes me incredibly sick to my stomach. Milk, sun, all of it, makes me vomit. Which is not fun. I truly do NOT understand bulimics, all that vomiting is just awful!

Anyway, thanks all. I had my cry. Now I am going to do some meditations everyday to see if that helps. I figure it can't hurt and maybe I will be less cranky? ROFL!!!

Hugs to all of you!

 

[Hound dog]

Irritates me when docs just won't do a simple test, most especially when there is a sound and logical reason. Even if it turned out you don't have what you're Mom has.......it rules it out as a possibilty. Win/win.

Irritating.

(((hugs)))

 

[flutterbee]

I'm sorry, Susie.

I'm a little confused how the doctor can be so sure that the parathyroid is out of whack because of the Vitamin D levels, because the parathyroid can actually be the cause of the low Vitamin D levels. I guess I would want to talk to him more about that. The chicken or egg thing.

I'm sorry the news wasn't good.

Thinking of you.

(((hugs)))

 

[susiestar]

I wasn't totally clear on that either, the parathyroid thing. But until I do some research I can't really ask intelligent questions. I didn't know it was being tested, but I can get answers from the rheumatologist when I see him on the 24th or else I see this doctor on the 6th, so he will explain more then.

I hate all these flippin' appts. And now trying to coordinate my prescriptions to mail in because our insurance changed and it is WAY more expensive to get my medications anywhere in town than to use the mail order pharmacy the INSURANCE COMPANY OWNS! Why is it legal for an insurance co to own a pharmacy and force you to use it??? For some things I am now getting them at WalMart and NOT using the insurance because we have a minimum of $10 per month locally or $20 for a 3 month supply by mail order. The $10 is just a MINIMUM. But I can get some of the medications for $4 a month or $10 for 3 months at WalMart - and that saves me a TON. The doctor knows, we just had a flyer that said starting jan 1 if you had insurance changes and needed to use 2 pharmacies to take advantage of the WalMart deal or a mail order deal, they understood. As they rx my pain medications, I want them to KNOW what all I am doing and do it by THEIR rules. (Actually I have another pharmacy also because my Vit D has to be compounded specially and even the ins co special compounding pharmacy can't/won't make it in injections.)

I am going to work out my list of reasons for the liver test, including my mom having it, the symptoms that COULD be caused/helped by it/the anxiety from not knowing and wondering, etc... and if the rheumy will not order the test I will make a special appointment with my reg doctor to test for it.

You ladies are jsut the greatest. I know I can come here and get some new ideas and strategies, etc... as well as have you "get it" on so many things. husband just doesn't. He will listen, but mostly he just doesn't understand any of it, and is scared of it all (including ME sometimes, esp if I am crying).

Thanks.

 

[house of cards]

I hope and pray you get some answers that can bring you some relief...SOON.

 

[TerryJ2]

Oh, Susie, I am so sorry. How incredibly frustrating!
When I want certain tests, I always make a fool of myself, and say, "I'll pay extra. Please? Pretty please? What do I have to do to get this test done? Should I get a referral from you?"
All in a pleading voice ... but it's the "referral" part that freaks them and they don't want to lose a pt. Heh heh.

 

[klmno]

I didn't respond earlier to this because I had no idea what to say- I don't know anything about this medication stuff. But, I want you to know that you remain in my thoughts. ((HUGS))

 

[Star*]

I wanna be......um.......well......is it .........gritchie?

Maybe......not.

hugs

 

[KTMom91]

So sorry your news wasn't better. Hope the docs are able to figure things out soon. Sending hugs.

 

[Jena]

Hey

I"m just sending you hugs as well. I'm so sorry for your frustrations of figuring this stuff out lately.

Yea it's time to just anti up and order the test. Gotta love doctors' umm NOT!!! Meditation sounds like a great idea, you soo know what you need as always to get you umm a bit less cranky

((((hugs))))

 

[ML]

You have every right to feel cranky! I just want you to start feeling better! Hopefully the high concentrated D shots will do the trick. You've been through a lot lately. Hugs and Love, ML