What I lacked in brains, I'm making up with effort!

[PatnGin]

Boy is this the truth. I am suffering from malnutrition and a severe protein deficiency. My albumin is at 2.1 causing swelling, loss of muscle use. I have to go in the hospital tomorrow and get infused with protein for a few days then try to keep it up orally.

[ctybnd]

Isn't it amazing how quickly this sneaks up on you? Hope the infusion works for you! Even eating 125 to 150 gms of protein a day, mine was still low. I was put on Creon 20 the end of June but have not had the blood work done yet to see if it is working. I do know it resolved all bathroom and gas issues. I have not regained any weight which was my biggest fear about taking it.

Melanie: My PTH was down to 235 in late June. Still high, but still going down. My vit. D was up to 36. Now my thyroid numbers keep going up - 12.4now. The endo is repeating the thyroid panel then will decide what to do. BTW, Happy Birthday!

[Melanie M.]

Carol, you're heading in the right direction -- good work! (And thanks for the bday wishes! )

[Susanna]

I was reading some of these old cautionary tales and wondering how those posters are doing. Has anyone heard from Carol, Shrinking, etc. and free to give an update?
Those posts are really important reminders for me and I'm grateful for their stories.

Susan

[meemiemay]

Hi. I'm brand-new here. Just joined tonight in fact, and am mostly lurking.

I just wanted to point out, if no one here knew this, that having an osteopath is a good idea if you want a doctor who is knowledgable about nutrition.

Osteopath's are primary care physicians trained in classic medicine AND nutrition and even herbal remedies. They have knowledge about bioidentical hormones as well. They are also trained to treat patients based on symptoms as well as lab results.

Most doctors just look at labs. Which can be frustrating when you know something is wrong, but it isn't showing up on any test yet.

As I said, they are trained in classic medicine, which makes them no different from any other general practitioner, yet they come with bonuses, which I detailed above.

I hope this helps,

Lynda

[DS2000]

Whatever kind of doctor, it is important that he/she be familiar with the DS and malabsorption.

No doctor, whether osteopath or not, can help a DSer if they don't understand the DS issues.

[jpcello]

I went to an osteopath and he was just as worthless as most of the other doctors I've gone to. I actually interviewed this guy and felt he could give me the attention I needed but when time came to see him and get my labs done, etc., he basically blew me off.

As DS2000, it's most important to find a doctor who is committed to working with you - what their training is doesn't really matter.

[elizabethn]

Originally Posted by meemiemay

Hi. I'm brand-new here. Just joined tonight in fact, and am mostly lurking.

I just wanted to point out, if no one here knew this, that having an osteopath is a good idea if you want a doctor who is knowledgable about nutrition.

Osteopath's are primary care physicians trained in classic medicine AND nutrition and even herbal remedies. They have knowledge about bioidentical hormones as well. They are also trained to treat patients based on symptoms as well as lab results.

Most doctors just look at labs. Which can be frustrating when you know something is wrong, but it isn't showing up on any test yet.

As I said, they are trained in classic medicine, which makes them no different from any other general practitioner, yet they come with bonuses, which I detailed above.

I hope this helps,

Lynda

Carol's surgeon--who is also mine--is a D.O. He's the first person to say that this is NOT really the case in practical terms, unless a physician has gone on to continuing education to really focus on such things as nutrition and alternative healing.

Even then, there are perhaps half a dozen doctors on the planet who actually KNOW anything about DS nutrition problems and the treatment thereof to any significant degree.

[NoGr8rLuv]

Ok, so....I messed up. 15 yrs post op. never really got post op care. Lived away from my doc. Now he's retired. Other than eating lots of protien and taking a prenatal vitamin, I don't remember getting much direction on aftercare. Needless to say, I'm having issues now. At 45, my body hurts constantly and I have suffered with severe anemia.
I know that my gen. Practitioner says my vit d is low. Calcium is too? Iron and ferron?
What special labs does a ds patient need vs other ppl? I thought we need to look for specific things but have never had these done. Don't even know if those were done even right after post op.
Specifically what should I eat now. What vitamins should I take?
I ended up in the ER the other night and they had no clue what happened. Gave me a bag of vitamins and something for pain and sent me home. Feeling some better but I have to get well. I can no longer work and no one understands what I'm dealing with, even my doctors. I'm at a point that I would just about travel to a ds doc just to get an eval and figure out where to go from here.
Any help is so appreciated.
Debbie.

[Jenn]

I think this is happening to me now. I remembered carol telling this story and am rushing to doctor tomorrow with a copy of this. I am 33 now and practically crippled. I hope/this forum may literally save my life.