Need an Endocrinologist in Atlanta STAT!!!

Hi, 

I haven't been on this board in ages, I honestly didn't think that I would even be alive to need it anymore. 

To make a long story short, I had a Rny to D/S revision in May 2009, had some complications that resolved after some months. Yet, still I was suffering from some unknown reason and after going from Dr to Dr and every hospital in metro Atlanta, I finally found out what was wrong with me.

 On Jan/2010 I was diagnose with a rare generic disorder called Alpha 1/ Antitrypsin disorder. Upon diagnosis I was already at stage 4 liver cirrhosis, accelerated due to my vit A, D and calcium supplements. Who knew my liver hated vitD and I do mean it hated it!!!

Anyway I had to cut out the offending supplements, follow a diff diet i.e, eat low protein, high carb because my body couldn't handle the ds diet. Along with a slew of other directives. 

Anyway, on Jun 04, 2013, I was miraculously blessed with a most precious gift of life. I received a liver transplant and therefore, no longer have Alpha 1 (yay me). So, now that my liver is doing A-ok the repair work begins. I am severly deficient in vit d, pth shows that my bones have been pretty much drained dry, I'm in the 900's.

The current Endocrinologist and I are not seeing eye to eye. She knows nothing about the ds and is low balling me supplement wise. 50000iu 1xawk I brought info and have tried to explain to her about ds vit supplementation but she won't listen and won't read the material. Because I am still dealing with the fallout from a cirrhotic liver there is only so much I can mentally tolerate and process at any given time before I shut down. I can't afford to let that happen right now.  

So, please someone help point me in the right direction.

Also, please forive any grammatical errors, spelling and the like  I'm still not 100% but I did my best. 

Thanks

Woah, I'm sorry for everything you've been through, and I'm glad you're on the mend now.

Many of us take 100,000 iu of dry vit D here.  I can't get my PCP to listen to me, I have to go back to the lovely DS surgeon who is seeing me for follow up and he writes to my PCP.  My PCP was saying that 500mg of calcium a day was fine for me and my surgeon wrote saying that I need AT LEAST 4,000mg a day as I have some osteopenia.

You need vitamin D injections ASAP!!  You also want to do a minimum of 600mcg of Biotech vitamin K2.  You probably should do at least 4,000mg of calcium citrate a day too (600mg max per batch, 2 hours apart as you won't absorb more) and ensure you take it with magnesium citrate in a 2:1 ratio, so that means 300mg of magnesium citrate elemental with each 600mg calcium dose.

I had elevated PTH (not as bad as yours) and I turned mine around this way within 3 months - yours may take a little longer though.

Huneypie, thank you so much for the ìnfo,

I'm glad that someone can kind of relate to my problem. I feel a little less frustrated and hopeful that I can get back on track. What the Dr doesn't know is that I have already upped the vit d another 50,000iu's a wk and even I know it still isn't enough but I'm reluctant to do anything more on my own without guidance. 

I want aware that there we're injections to be had by now that I know,  I'm on it!

Hopefully, others will also chime in regarding their vit deficiencies and we can support each other on. 

Thanks again!

Call Dennis Smith's office and see if he can give you a recommendation on who to see that understands the DS.  If possible talk to him personally and explain what's going on.

In the meanwhile start taking about 4 doses a day of calcium citrate, the oil based 50K D, an oil based big A, and a bunch of D3 and K2(dry).  You are far enough out that you will absorb some of the oil based vites.  No where near all, but some.  Add in some magnesium too.  All this is on top of what you are already taking.  You do need injections stat, you are quite right.  You need more than just pills.  This is just a stop gap till you get to someone who can help you.

Next best bet, a teaching hospital/medical school.  I'm sure there is one in ATL.  Call the Endocrinology Department and see who you can talk to...

Congratulations on the liver transplant!

 Patty, thank you for the kudos and for responding, 

A teaching hospital is a great idea, I will be calling tomorrow am.

There is so much I have to relearn about this d/s. Most of the info I knew is long gone.

I will attempt to contact Dr Smith, however, I will say that he and many other wls have refused several request from both myself and other physicians regarding my care (shrugs). So if anyone knows what endo he refers his patients to, it would be of great help.

Thanks! !

Even a newbie will absorb about 20% of an oil based gelcap.  Since she can't get what she needs this is a simple stopgap measure.  Something is better than nothing.  Those who are further out will absorb more from oil based gelcaps than a newbie will.  No one can say for sure how much but something is better than nothing.  Since I already know she is pursuing the treatment she needs I am just giving her something to do in short term that can't hurt her and may help.

Oil based is never the best choice for us.  But it's still an improvement on taking nothing.

And I keep forgetting about those D patches.  Those are a great idea.  I keep looking for absorbtion info.  Has anyone else run across some?  We should absorb these just fine but I'm looking for some kind of proof that ANYONE absorbs a significant amount from the patches.

it sounds like you are doing better with your transplant, thank God for that.  With your metabolic bone disease I would see an endocrinologist who specializes in Vit D.  Dr M. Holick from Boston medical center.  you would be surprised how much an endocrinologist doesn't know, so stick to a Vit d specialist.  You really need Vit D injections.  Find a naturopathy they can give you a RX for that if your endocrinologist doesn't know about them, which I am sure they don't.   I took injections for 2 years as my Vit D was very low, and PTH high (not anywhere like yours)  after getting it high (it actually got to 130 after my 600,000 IU injection) I can not just take 50K biotech dry Vit d and maintain my vit d at about 90....good luck to you 

Hello Airbender,

Have you seen Saka around, he is my fav 

Yes, I am so blessed to have an amazing liver, no complications, rejections nothing! My Drs are amazed. I'm even exercising eek!!!

A specialist in vit d, honestly I didn't know there was any such thing. This is hard for me to admit but I feel so ignorant these days. Not only am I learning new things I'm having to relearn old things. 

Anyway, all this advice you all are sharing is really helping me to narrow down exactly the type of Endo I need. 

Thank you so much!

I'm so sorry you have been through so much, but glad you were able to get a healthy liver and move forward with restoring your health.

I think you have already received some great suggestions, and would add that you could also contact Dr. Greenbaum even though your revision was so long ago, for vitamin recommendations. Of course he's not an endocrinologist, but I bet he knows more about your Vitamin D needs than the one you have seen *****fuses to educate herself.

Your personal experience is unique for someone with the DS. I think you will need a lot of both D and calcium supplementation to catch up. My own PTH kept going up slowly even with some attempts to lower it, until I really got serious and increased both calcium citrate and vitamin D at the same time. Now it's coming back down, but it took 100,000 units of dry D daily (not weekly) to accomplish this. I think getting started with injections, since you have so much catching up to do, is probably a great idea, though I didn't do this myself, and I love the suggestion someone made about a teaching hospital. Even if they have never seen anyone quite like you, someone there should be sufficiently motivated to learn about the DS and help you.

Larra