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Post by tummyache on Mar 14, 2019 18:44:07 GMT -5
Has anyone had an injection of Prolia for osteoporosis? I am concerned as noticed sorbitol in ingredient list. Anyone with any experience?
I've thought about this overnight and think I am going to call the doctor's office today and refuse shot, instead talk about alternatives, if there are any left to me... I have been through about everything else. Maybe there is something else new on the market?
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Post by tummyache on May 3, 2019 6:53:37 GMT -5
Since this Prolia situation, my doctor wants verification of my fructose intolerance updated from the 1970's, when I was diagnosed using cultured lymphocytes on a fructose medium [later thought to be FPBaseD when their research was spun off commercially to a company called Specracell]. We have been going around in circles trying to find a geneticist who will agree to see me in the central Texas area, with no luck. Looks like if you are an adult, the only place to go is either [1] Baylor College of Medicine in Houston @ 713-798-7820 or [2] UT- Southwestern in Dallas @ 214-645-8300. Both look to be excellent, and have great genetic departments that are right on target, if anyone else is in need.
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Post by colormist on May 7, 2019 7:47:08 GMT -5
Baylor is where my bloodwork was sent for confirmation of HFI diagnosis!
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Post by tummyache on May 10, 2019 18:48:41 GMT -5
Went to Baylor College of Medicine in Houston yesterday as a day trip and missed all the rain -- couldn't believe the pictures of the rain damage on the news this AM! The Adult Genetic dept. is doing ALDOB and FBP1 genes for me + checking my liver and kidneys. Yah! Be interesting to see if the DNA verifies the unorthodox, for the time, cultured lymphocyte diagnosis I got way back in 1973 for HFI. I have not felt secure with their diagnosis all these years; only until recently, when the professional literature has begun to reference cultured lymphocyte testing as an alternative to liver biopsy for Fructose Bisphosphatase Deficiency, that wasn't isolated and named until 1970. For instance, Medscape mentions it and the 2002 paper by a group of Japanese researchers paper on it. Anyway, thought of you, Colormist -- I think you would get a kick out of my Geneticist saying, "Oh, you can't have this because you would have died as a baby; and besides, you are not sick enough now to have it." I almost laughed in his face, thinking about you! I asked him to humor me, and run the tests anyway.
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Post by colormist on May 13, 2019 10:38:50 GMT -5
OMG! That's the EXACT SAME THING my geneticist told me! WTF are these doctors being taught?!? Like, clearly there are tens of us out there that were diagnosed as adults. Those that aren't diagnosed and just living their life thinking they're weird or sugar sensitive.  |
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Post by hfimomof3 on May 21, 2019 23:17:52 GMT -5
"Oh, you can't have this because you would have died as a baby; and besides, you are not sick enough now to have it."
What the heck? Did he really say that? Good grief!
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Post by tummyache on May 22, 2019 18:36:19 GMT -5
I think what's going on is: we present ourselves to discuss our situation; then the doctor disappears into their office to refer to a universal medical reference they all use for disease review; the doctor returns to the exam room and makes the out-of-date statement we are all hearing. Since I am retired, and my hobby these days is to keep up with all the latest info I can get my hands on about fructose intolerance, it never ceases to amaze me how some recent articles still repeat old ideas (especially these doctors!) concerning HFI + FBPaseD, rather than refer to the newer research. I could have explained a few things to him...but don't want to be a "smarty pants"...sometimes it's so hard to keep quiet! It doesn't occur to the doctor that we have lived through the worst of it and have saved ourselves by adjusting our diet already, to some extent, through self- knowledge and trial and error. As an adult, we have a pretty good idea what is wrong, or at least a suggestion of what's wrong. Besides, our body is bigger, the ratio is different than a baby, our diet more varied and we are in more control what we eat than a baby. There are differences in symptoms between babies and adults...period!
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Post by colormist on May 23, 2019 7:57:58 GMT -5
Ah! That's a pretty solid assumption. When I caught my doctor off-guard mentioning HFI and asking for a referral, she listened and did research in front of me. I said I was surprised she believed me and she acted shocked that anyone would NOT believe me. But my geneticist knew exactly why I was coming in and had done the prep before hand--he was the one that said I'd would be a dead baby.
I always come off as a smarty pants in my visits. There's no way I'm going to go to a doctor unless I already have a pretty good idea what's wrong. I've had too many nuts doctors and I'm sick of them telling me to drink more water because my pee is yellow and I'm clearly dehydrated. (Side note: yellow pee is a fairly regular occurrence for people with HFI.)
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Post by tummyache on May 23, 2019 14:28:31 GMT -5
Well, I did take in copies of a few recent medical journal articles on cultured lymphocyte testing in lue of liver biopsy for FBpaseD, and SpectraCell's scientific page explaining the connection on their website, which I handed to him. Not sure he thought much of it. [SpectraCell is in Houston too; it's the commercial company who spun-off the original research done at UT-Austin, where I was DX'd back in the 70's.] It will be interesting to see if they find anything -- I just hard to be patient and wait it out. He only agreed to run the two genes (ALDOB + FBP1) -- imagine students do a lot of the leg work since it is a teaching hospital, and that takes time.
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Post by tummyache on Aug 7, 2019 20:31:31 GMT -5
Baylor found one minor, "uncertain significance" ALDOB snp, recently discovered, with very little info I could find; nothing on the FBP1 gene. So, looks like I am stuck with the old diagnosis from 1970's of FBPaseD, as the best guess of a diagnosis.
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Post by colormist on Aug 8, 2019 10:03:03 GMT -5
That's disappointing. :\
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Post by tummyache on Aug 9, 2019 6:50:13 GMT -5
Yes, so disappointed! I went to a party a couple of days later and ate a 3/4 cup of fresh mixed fruit to celebrate....I was sick for 3 days. So, I am back on the wagon again, sticking to listening to my body and no longer going to listen to doctors any more or further pursuing a current medical diagnosis. I will stick with what I know from my own symptoms to be true. Actually, I have my diet pretty well worked out at this point by trial and error.
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