brooklyngirl
Yankee gone south
Thank you sooooo much ladies! I'm generally a pretty quick learner but this stuff has me a bit overwhelmed. I really appreciate the help!
Lab results
- Thread starter brooklyngirl
- Start date
OOOooooh I did not know that about elevated CRP. Once again, KathyF knows her stuff.
Another thing. Double check the amounts on your calcium, and double check how many tablets it takes to get the correct amount. Someone was taking Petites and was woefully short but thought they were taking 2,000mg like they should be.
My night vision has always sucked, even now that I've got my A up where it should be. It's better since I had custom Lasik, but still I don't drive at night much. I take 125,000 to 150,000 a day of dry A just to maintain.
Another thing. Double check the amounts on your calcium, and double check how many tablets it takes to get the correct amount. Someone was taking Petites and was woefully short but thought they were taking 2,000mg like they should be.
My night vision has always sucked, even now that I've got my A up where it should be. It's better since I had custom Lasik, but still I don't drive at night much. I take 125,000 to 150,000 a day of dry A just to maintain.
brooklyngirl
Yankee gone south
Ok, so today the doc said I should have the next set of labs in 6 months. Should I request a set for the ones that were off in 3 months or will the hematologist take care of that stuff?
KathyF
Well-Known Member
- Joined
- Jan 5, 2014
- Messages
- 245
Did the doctor have a diagnosis for the high C-reactive protein? There can be any number of reasons for it. As for more blood tests, I think the hematologist can order them for you. I would want one in 3 months to see if if I was responding to the increased doses of vitamins A, D, and K.
Yeah, the hematologist would be the one to answer the C reactive protein question, as KathyF said.
You want to have repeat labs done on any vitamins you are working on raising. You don't want to overshoot your goal, but don't freak out if you do. When I accidentally got my D up to 348, it floated back down nicely within a short period of time.
Are you charting your labs on a spreadsheet? That way you can see your trends at a glance.
You want to have repeat labs done on any vitamins you are working on raising. You don't want to overshoot your goal, but don't freak out if you do. When I accidentally got my D up to 348, it floated back down nicely within a short period of time.
Are you charting your labs on a spreadsheet? That way you can see your trends at a glance.
brooklyngirl
Yankee gone south
Ya know, he didn't even have the nurse mention it when she called, or make a note about it on the paperwork, only for the iron and vits K & A. If I hadn't posted it all here, I would've thought it wasn't a big deal since he didn't think it was.
And I will transfer everything from the document I created onto a spreadsheet. Have to break out the ACTUAL computer to do that one
Oh. My. Well, this is a really good instance of WHY we have to be our own advocates after the DS. Because the doctor doesn't understand our unique vitamin needs. You might have to argue in order to get what you need. I'd just skip right over your PCP and deal with the hematologist, since they usually know labs better anyway.
Keep in touch as you go through this, keep us updated so we can help you through this.
When my ferritin and all my iron markers were low, I had severe muscle cramps. Charley Horses in my feet and legs during the night, and some really bizarre toe spasms when I got my pedicures. Those went away after my very first iron infusion of Venofer. I really cannot stress enough the importance of iron infusions. Don't be afraid to go for them. Don't think you can get the job done with oral iron, you can't.
My PCP (the one I recently fired) didn't think my ferritin of 9 was an issue, either. My hematologist, however, DID. His eyes bugged out when he saw the 9. So don't count on your doctor seeing things. Be proactive.
Keep in touch as you go through this, keep us updated so we can help you through this.
When my ferritin and all my iron markers were low, I had severe muscle cramps. Charley Horses in my feet and legs during the night, and some really bizarre toe spasms when I got my pedicures. Those went away after my very first iron infusion of Venofer. I really cannot stress enough the importance of iron infusions. Don't be afraid to go for them. Don't think you can get the job done with oral iron, you can't.
My PCP (the one I recently fired) didn't think my ferritin of 9 was an issue, either. My hematologist, however, DID. His eyes bugged out when he saw the 9. So don't count on your doctor seeing things. Be proactive.
brooklyngirl
Yankee gone south
Thanks @Sheanie ! It was hard to stick up for myself in the past when I felt like the docs knew better, but it's been a big help to have the vets to help us newbies learn and point us in the right directions. Oh, and I'm not afraid of infusions, I'd rather that than the black diarrhea the pills give me! :103:
Well, that's odd. Iron always gave me diarrhea, too, and everyone I told (including the doctor I just fired) claimed that wasn't true. Only mine was green. So there.
Yeah, my former doctor cemented her fate with me when she told me that my "bypass" had made me immune compromised. WHAT? My husband, a dentist, was furious. He went on a walking rant through the house, and he is a very calm man. I was stunned, he was so angry. He said, don't you think your WLS surgeon would have mentioned that little detail IF IT WERE TRUE? Yeah. So I have NEVER trusted doctors. From a young age, I learned that they were people, too, and to think for myself. I've always been a maverick when it comes to my health care and what I will not allow. I also will not allow a doctor to treat me or my family whom I cannot understand. Learned that lesson the hard way when my oldest son had epilepsy at age 3. The neurologist didn't speak English as his first (second, or third) language and became arrogant when questioned for clarity on medication dosing and labs. There's another clue for you: Arrogance under questioning is a huge Red Flag in a doctor. If they don't like explaining things, they don't understand it well enough to explain it to their grandmother. Being able to explain something to your grandmother should be a requirement for medical school students to graduate. Because you never really understand something unless you can explain it to your grandmother.
Yeah, my former doctor cemented her fate with me when she told me that my "bypass" had made me immune compromised. WHAT? My husband, a dentist, was furious. He went on a walking rant through the house, and he is a very calm man. I was stunned, he was so angry. He said, don't you think your WLS surgeon would have mentioned that little detail IF IT WERE TRUE? Yeah. So I have NEVER trusted doctors. From a young age, I learned that they were people, too, and to think for myself. I've always been a maverick when it comes to my health care and what I will not allow. I also will not allow a doctor to treat me or my family whom I cannot understand. Learned that lesson the hard way when my oldest son had epilepsy at age 3. The neurologist didn't speak English as his first (second, or third) language and became arrogant when questioned for clarity on medication dosing and labs. There's another clue for you: Arrogance under questioning is a huge Red Flag in a doctor. If they don't like explaining things, they don't understand it well enough to explain it to their grandmother. Being able to explain something to your grandmother should be a requirement for medical school students to graduate. Because you never really understand something unless you can explain it to your grandmother.
brooklyngirl
Yankee gone south
Soooo, I called a hematology center on Monday, a big practice with a good reputation. They took a day to get back to me, then I had to have my records and blood work faxed over for them to review before giving me an appointment. They finally called back just now to say that I don't need to come in because my results looked "pretty darn good". Seriously? Wtf?
Did you explain to them that you have malabsorptive issues? I used the term "short gut syndrome" back in Oct to get my point across...worked wonders.
brooklyngirl
Yankee gone south
I said that I had the DS, didn't use those words, I'll give it a shot. I'm very annoyed.
I found that around here...NO ONE knows what you mean by DS...but using the term short gut syndrome did make the hospital I went into in Oct listen to me.
brooklyngirl
Yankee gone south
True, she was like "oh, um, can you spell that?"
LOL, yeap...that's the reaction I got too!
