osteoblast
03-20-2007, 06:59 PM
I know there has been some discussion regarding the two blood calcium tests-total calcium and ionized calcium. I wrote a few weeks back that my dr. had ordered on two occasions the total calcium tests when there was concern about elevated calcium . Both total calcium tests came back slightly out of range on the high side. Another dr. I was seeing ordered an ionized calcium-which came back in range.
I was trying to get clarity about which is the most reliable test. The first dr. said it was the total not the ionized. The second said it was absolutely the ionized. Another poster here ( Lewis) stated it was the ionized and cited to dr. norman's parathyroid website. I looked there and he clearly states the ionized as the preferred. Also other checking around labtest sites on the net appear to say it is the ionized.
Has anyone else looked at this?
I was trying to get clarity about which is the most reliable test. The first dr. said it was the total not the ionized. The second said it was absolutely the ionized. Another poster here ( Lewis) stated it was the ionized and cited to dr. norman's parathyroid website. I looked there and he clearly states the ionized as the preferred. Also other checking around labtest sites on the net appear to say it is the ionized.
Has anyone else looked at this?
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DesertBloom
03-20-2007, 09:27 PM
Hi Osteoblast: Most Dr's run total calcium and feel that's sufficient, but then there are others that use ion cal test's to determine specific problems, so they feel they are more accurate, so you'll have to decide, based on your individual symptoms. Ionized cal measures the *free* calcium in your body and not the bound. Below is a link that explains it but it's a more than a couple of pages long. My Drs feel that the ionized test gives more info since they are looking for specific problems that a total cal *may* not show, even if it is elevated or not. My total cal is always normal and my ion cal is always elevated, so that just gives you an idea on how different the results can be. Also included in the link below is the reference ranges for total cal and ion cal which are very different.
http://www.labtestsonline.org/understanding/analytes/calcium/test.html
Good Luck...
http://www.labtestsonline.org/understanding/analytes/calcium/test.html
Good Luck...
osteoblast
03-20-2007, 10:04 PM
Thank you DesertBloom. You confirmed what was becoming clear to me. I am also baffled by the advice I received about cutting back my calcium intake , after the dr. reviewed the high total calcium reading. Do you know how that works? Unfortunately I have a non-verbal dr. and the last time I called the dr. I was asked by her asst. "the dr. wants to know what is your one question?" Well, it's not always so tidy that one question will do! Anyway I had to make a choice and the cal supplement question could not be asked. I need a new dr. that wants to communicate.
DesertBloom
03-21-2007, 12:37 PM
Hi Osteoblast: Boy, I don't know if I could handle a Dr that only allows one question, although I've had a few like that years ago. Could you possibly find someone else?
I'm not sure what your question is, are you asking about how calcium is used by the body?
I've always been told that ionized Ca is more important, but who knows...
Here's another link that explains the test, and it's uses.
http://www.nlm.nih.gov/medlineplus/ency/article/003486.htm:wave:
I'm not sure what your question is, are you asking about how calcium is used by the body?
I've always been told that ionized Ca is more important, but who knows...
Here's another link that explains the test, and it's uses.
http://www.nlm.nih.gov/medlineplus/ency/article/003486.htm:wave:
osteoblast
03-21-2007, 12:56 PM
Hi DesertBloom: Yes, it was the one question comment that told me clearly that the dr. was not right for me.
On the question, I will try to be more clear and I will check the site you provided. When you have been diagnosed with high blood calcium, why does
the dr. advise you to cut your calcium supplement intake? What is the mechanism that they are seeking to alter? Specifically, can you expect to lower the blood calcium level by lowering supplemental calcium intake?
On the question, I will try to be more clear and I will check the site you provided. When you have been diagnosed with high blood calcium, why does
the dr. advise you to cut your calcium supplement intake? What is the mechanism that they are seeking to alter? Specifically, can you expect to lower the blood calcium level by lowering supplemental calcium intake?
DesertBloom
03-21-2007, 06:51 PM
Hi Osteo... I'll try to answer your question, but remember I'm still trying to understand this myself and I haven't had much luck in the research of it either.
If you read the Cleveland Clinics paper on Forteo or Susan Ott's as well as the NIH, they all say that if you are taking Forteo and experience hypercalcemia, or an elevation in Ca, then you should decrease your Ca by 50%. Unfortunately they don't go any further to explain this, but that is the advice.
According to my Dr. if you have consistent elevated Ca, then you don't want to increase it by taking supplements. I realize some Dr's don't agree with this, but you could look at it like other mineral elevations/decreases, like if you have low D you supplement it orally to increase it, or the same with say high Potassium. My husband has elevated Potassium, and since that is very dangerous like hypercalcemia, they tell him he can't eat anything with Potassium in it (Bananas, tomatoes, etc) because it will elevate his count-life threatening. He has run into the same problem that I have where one Dr agrees with the logic and another doesn't. You can look at it like a supply and demand issue where you don't want to take too much or too little depending on what's causing it.
I don't know exactly what the mechanism is that your trying to regulate other than the way your body metabolizes Ca. Since we know Forteo can elevate Ca, then we need to watch that level. Lowering someones Ca intake makes more sense to me than stopping it altogether (like me). If you want to read the Cleveland Clinics advise on this click the link in the thread about "Forteo 24mos." if you haven't already read it. I'm going to throw this comment in, but don't quote me, since I'm not sure, but when you have elevated Ca you're pulling Ca from different sources into the blood and one of those is the bones; since bones need Ca, to grow, you wouldn't want to deplete the Ca or lower it in the bones and from the other organs that need it to exist, which is all major organs.
If I ever get a true definitive answer I'll let you know. My Dr has explained it to me, but I guess I'm just not getting it :confused: beyond what I've already mentioned.:wave:
If you read the Cleveland Clinics paper on Forteo or Susan Ott's as well as the NIH, they all say that if you are taking Forteo and experience hypercalcemia, or an elevation in Ca, then you should decrease your Ca by 50%. Unfortunately they don't go any further to explain this, but that is the advice.
According to my Dr. if you have consistent elevated Ca, then you don't want to increase it by taking supplements. I realize some Dr's don't agree with this, but you could look at it like other mineral elevations/decreases, like if you have low D you supplement it orally to increase it, or the same with say high Potassium. My husband has elevated Potassium, and since that is very dangerous like hypercalcemia, they tell him he can't eat anything with Potassium in it (Bananas, tomatoes, etc) because it will elevate his count-life threatening. He has run into the same problem that I have where one Dr agrees with the logic and another doesn't. You can look at it like a supply and demand issue where you don't want to take too much or too little depending on what's causing it.
I don't know exactly what the mechanism is that your trying to regulate other than the way your body metabolizes Ca. Since we know Forteo can elevate Ca, then we need to watch that level. Lowering someones Ca intake makes more sense to me than stopping it altogether (like me). If you want to read the Cleveland Clinics advise on this click the link in the thread about "Forteo 24mos." if you haven't already read it. I'm going to throw this comment in, but don't quote me, since I'm not sure, but when you have elevated Ca you're pulling Ca from different sources into the blood and one of those is the bones; since bones need Ca, to grow, you wouldn't want to deplete the Ca or lower it in the bones and from the other organs that need it to exist, which is all major organs.
If I ever get a true definitive answer I'll let you know. My Dr has explained it to me, but I guess I'm just not getting it :confused: beyond what I've already mentioned.:wave:
osteoblast
03-22-2007, 01:01 AM
Thank you so much DesertBloom! I went to the Cleveland Clinic paper that you referenced. I saw the section that you referred to regarding cutting the calcium by 50% when there is hypercalcemia. I also went to Susan Ott's site but I couldn't find similar information. When you get a chance can you clue me in on where to look on her site?
You said that your calcium supplementation was entirely cut out due to your high serum ionized reading. Were you still high in range or were you outside the upper end of the range? Did the dr. say you were in fact hypercalcemic? Did you have tests after eliminating supplemental calcium, and did your serum ionized calcium go down?
I may have gone through my first 5 months of forteo with out of range readings in total calcium ,and would not have known it if I hadn't pushed the dr. for follow up testing. She was going to let me go with no additional testing for 12 months. I don't think that is right. It was because of the helpful and informative folks at this board that I understood that earlier monitoring should be done.
I don't know if the elevated total calcium reading means that I could not get the full benefit of the forteo during those initial 5 months. And, the topic is a bit complicated because I had an ionized calcium that came back mid range. So, I don't know .
.
You said that your calcium supplementation was entirely cut out due to your high serum ionized reading. Were you still high in range or were you outside the upper end of the range? Did the dr. say you were in fact hypercalcemic? Did you have tests after eliminating supplemental calcium, and did your serum ionized calcium go down?
I may have gone through my first 5 months of forteo with out of range readings in total calcium ,and would not have known it if I hadn't pushed the dr. for follow up testing. She was going to let me go with no additional testing for 12 months. I don't think that is right. It was because of the helpful and informative folks at this board that I understood that earlier monitoring should be done.
I don't know if the elevated total calcium reading means that I could not get the full benefit of the forteo during those initial 5 months. And, the topic is a bit complicated because I had an ionized calcium that came back mid range. So, I don't know .
.
DesertBloom
03-22-2007, 05:14 PM
Hi Osteo... I've been looking for the link to Dr Ott's statement on hypercalcemia and forteo and unfortunately can't find it right now. I remember it wasn't at the link for the class (bone physio) that I post a lot, so it will take a while to find it. In the meantime, if you want to read the FDA's paper on Forteo it has similar advice about reducing either the forteo *and* calcium in women or just calcium. It doesn't say by how much, so I don't know if the 50% they used at CCJM is the recommended amount for all instances.
On my ion Ca, I'm usually about 1 point out of the normal range, so if normal is 4.5-5.5, I'm usually at 5.54, or the highest was 5.6. My Ca went down while off the oral Ca but also went back up so I really can't answer your question. It was also normal at one point, but always at the upper limit of normal which is okay with me. My Dr never said I was hypercalcemic, however it may be a situation where semantics are involved. She did tell me to watch for the symptoms of hypercalcemia, which I don't have.
Before you can go on Forteo you have to have your Ca checked, are you saying your Dr didn't do that until you asked for the test? I don't know if elevated Ca would have any effect on Forteo but I'll ask my Dr when I see her in a couple of weeks. According to my NTx test, my score was where she expected it to be with the Forteo, so I don't know if that tells you anything, except that the Forteo IS working. I'm *still* stalling on my next NTx, for many reasons, and will post it as soon as I get it. Oh BTW, I just thought I would mention that there are supplements that *may* raise your serum calcium level and they are thiazide diuretics, lithium, vitamin D, and vitamin A.
On my ion Ca, I'm usually about 1 point out of the normal range, so if normal is 4.5-5.5, I'm usually at 5.54, or the highest was 5.6. My Ca went down while off the oral Ca but also went back up so I really can't answer your question. It was also normal at one point, but always at the upper limit of normal which is okay with me. My Dr never said I was hypercalcemic, however it may be a situation where semantics are involved. She did tell me to watch for the symptoms of hypercalcemia, which I don't have.
Before you can go on Forteo you have to have your Ca checked, are you saying your Dr didn't do that until you asked for the test? I don't know if elevated Ca would have any effect on Forteo but I'll ask my Dr when I see her in a couple of weeks. According to my NTx test, my score was where she expected it to be with the Forteo, so I don't know if that tells you anything, except that the Forteo IS working. I'm *still* stalling on my next NTx, for many reasons, and will post it as soon as I get it. Oh BTW, I just thought I would mention that there are supplements that *may* raise your serum calcium level and they are thiazide diuretics, lithium, vitamin D, and vitamin A.
osteoblast
03-22-2007, 08:23 PM
Hi DesertBloom- Yes, the dr. at mayo did test total calcium on three occasions before putting me on Forteo. Range is 8.9 to 10.1 , and my results were 10.2, then two days later 10. Then six weeks later 9.8. Then I was put on Forteo and told we will see you in a year. I pushed for taking the additional tests after being on forteo for several months. Most recent (after 4 months on forteo) 10.5. Then I was told to cut calcium by a third. And told next tests would be in 6-7 months. This does not seem like she is monitoring the situation to me. I really want to find a local dr. who is interested in monitoring me while on forteo and who will address my concerns.
I would love to see Dr. Ott at UW but it is impossible to see her . When I went to UW about a month ago , I saw her colleague -for me , it was awful! This is the dr. who said relax you can't fracture on forteo. He was controlling, domineering and so much more that I could not abide. The dr. kept saying he wasn't worried about the elevated calcium ( he said they're just numbers-unbelievable). And when i asked him about hyperpara he said he couldn't respond because he's not an endo. As I also have hypothyroid and hashimoto's I asked him if there was any endo with bone specialization. in the area. He said yes, but she is not taking any new patients. I checked with her office and they said with a dr. referral it might be possible but not very likely. Well, the UW dr. made the referral (I am grateful for this) and it worked. This new dr. is rated as a top endo doctor in Seattle by her colleagues. She accepted me on an urgent basis and I see her tomorrow.
This situation is sending me up the wall! While on forteo I don't want to have a condition that is minimizing its effects. I could be a compliant, agreeable patient and just wait 6-7 months. But, if the out of range total calcium continues, I don't think that's good. I accessed a Letter that Dr. Licata wrote that was published in the New England Journal of Medicine on May 5, 2005. His letter addresses the elevation of serum calcium levels-so, obviously he is concerned by it. I accessed this article through the local library's online database. Are you familiar with his letter ? If you haven't read it , I think you would be interested. If you can't get the article, let me know and I will provide you with a few of the impt. sentences. I am taking a copy of this to the endo tomorrow. I hope to have something better to report.
WOW I am going on too far with this. Sorry. I needed to vent. I sure hope this is the end of the search for dr. right. I am not looking for perfection-just someone with the specialization needed and who has an interest in communicating and monitoring me. Is that too much to ask?
I would love to see Dr. Ott at UW but it is impossible to see her . When I went to UW about a month ago , I saw her colleague -for me , it was awful! This is the dr. who said relax you can't fracture on forteo. He was controlling, domineering and so much more that I could not abide. The dr. kept saying he wasn't worried about the elevated calcium ( he said they're just numbers-unbelievable). And when i asked him about hyperpara he said he couldn't respond because he's not an endo. As I also have hypothyroid and hashimoto's I asked him if there was any endo with bone specialization. in the area. He said yes, but she is not taking any new patients. I checked with her office and they said with a dr. referral it might be possible but not very likely. Well, the UW dr. made the referral (I am grateful for this) and it worked. This new dr. is rated as a top endo doctor in Seattle by her colleagues. She accepted me on an urgent basis and I see her tomorrow.
This situation is sending me up the wall! While on forteo I don't want to have a condition that is minimizing its effects. I could be a compliant, agreeable patient and just wait 6-7 months. But, if the out of range total calcium continues, I don't think that's good. I accessed a Letter that Dr. Licata wrote that was published in the New England Journal of Medicine on May 5, 2005. His letter addresses the elevation of serum calcium levels-so, obviously he is concerned by it. I accessed this article through the local library's online database. Are you familiar with his letter ? If you haven't read it , I think you would be interested. If you can't get the article, let me know and I will provide you with a few of the impt. sentences. I am taking a copy of this to the endo tomorrow. I hope to have something better to report.
WOW I am going on too far with this. Sorry. I needed to vent. I sure hope this is the end of the search for dr. right. I am not looking for perfection-just someone with the specialization needed and who has an interest in communicating and monitoring me. Is that too much to ask?
DesertBloom
03-23-2007, 03:08 PM
Hi Osteo...Hi it's too bad you couldn't see Dr Ott, but at least your getting a excellent referral, I hope it goes well. If you find out anything significant about the calcium level let me know. I've been tested and retested on everything that would explain this, and nothing shows up. Did anyone ever say their was a connection between your thyroid probs and the calcium?
On the article from Dr Licata, are you referring to the one titled Teriparatide, Osteoporosis, Calcium and Vitamin D if so I've only been able to read the first para, since it's a purchase only article. I haven't tried to get it from the library, because I haven't been there in a long time. What does he say about it?
Good luck with the new Dr and I hope she turns out to be what you're looking for!!! Lately I've been having good luck with female Drs, so I hope that is the case with you.:wave:
On the article from Dr Licata, are you referring to the one titled Teriparatide, Osteoporosis, Calcium and Vitamin D if so I've only been able to read the first para, since it's a purchase only article. I haven't tried to get it from the library, because I haven't been there in a long time. What does he say about it?
Good luck with the new Dr and I hope she turns out to be what you're looking for!!! Lately I've been having good luck with female Drs, so I hope that is the case with you.:wave:
osteoblast
03-24-2007, 12:09 AM
Hi DesertBloom-the dr. couldn't have been better! She really exceeded my expectations. She stated she and Dr. Ott are very good friends. While it would have been good to see Dr. Ott instead of going to Mayo, I believe I have now found the right person. I really needed to see an endo. I only wish I had seen her six months ago. Alot of the angst I have been through would not have happened. Well it was eye opening. I am trying to digest all the information- I was on information overload.
There are alot of things to share and as I said I am just processing the info. Some of it not so great . I am very bewildered that some of the things she is looking at and testing were not done before.
She is taking a good look at the calcium situation. She ordered alot of tests and I went over to the lab. She included total and ionized, so she wants to look at both. She did not state a connection between the hypothyroid, hashimoto's and the calcium. She at least now isn't thinking hyperpara , she noted previous normal pth , but also commented that normal pth doesn't rule out hyperpara. I will be certain to update you on the calcium situation in the event that it could help you.
She found a nodule on the thyroid , so I am getting a thyroid scan next week.
I know you stated that you too have this situation. If it looks problematic , then a needle biopsy to check for cancer. Oh great.
Also had spinal x-rays. I am worried about this, I'll know on Monday.
Last on my list of questions for her was celiac. She got to it sooner, within about 5 minutes . She was surprised this was not done at Mayo. I am not totally clear- but it seems the test is first done with the blood test. If this comes out negative, it seems that she said she would order a small bowel biopsy. I know you said you were waiting on your test results for celiac. Any news? For all out there, if your bone loss is significant-push for this test to rule out it as a cause. If positive it seems she would want to stop the forteo. But I didn't delve on this since now it is a hypothetical
About the Licata article, I am going to need to follow up tomorrow on that one. It's been a long day.
There are alot of things to share and as I said I am just processing the info. Some of it not so great . I am very bewildered that some of the things she is looking at and testing were not done before.
She is taking a good look at the calcium situation. She ordered alot of tests and I went over to the lab. She included total and ionized, so she wants to look at both. She did not state a connection between the hypothyroid, hashimoto's and the calcium. She at least now isn't thinking hyperpara , she noted previous normal pth , but also commented that normal pth doesn't rule out hyperpara. I will be certain to update you on the calcium situation in the event that it could help you.
She found a nodule on the thyroid , so I am getting a thyroid scan next week.
I know you stated that you too have this situation. If it looks problematic , then a needle biopsy to check for cancer. Oh great.
Also had spinal x-rays. I am worried about this, I'll know on Monday.
Last on my list of questions for her was celiac. She got to it sooner, within about 5 minutes . She was surprised this was not done at Mayo. I am not totally clear- but it seems the test is first done with the blood test. If this comes out negative, it seems that she said she would order a small bowel biopsy. I know you said you were waiting on your test results for celiac. Any news? For all out there, if your bone loss is significant-push for this test to rule out it as a cause. If positive it seems she would want to stop the forteo. But I didn't delve on this since now it is a hypothetical
About the Licata article, I am going to need to follow up tomorrow on that one. It's been a long day.
osteoblast
03-24-2007, 03:30 AM
My oooops- In reviewing the earlier tests,the dr. at Mayo did do the gluten sensitivities tests. I didn't focus in on this before and didn't understand that gluten sensitivities tests referred to celiac. This is all new and overwhelming to me. Also she didn't say anything about celiac -not that she tested it and not that it came back negative. Now I will need to find out if I have to go through the small bowel biopsy which requires endoscopy-a tube going down your throat.
DesertBloom
03-24-2007, 04:44 PM
Hi Osteo: That's great news, what kind of Dr is she? Well it's fantastic you finally found a Dr that you like, that will talk to you and do a thorough check of you each time.:blob_fire :blob_fire
Good luck with the thyroid nodule... I'm having another ultrasound in about a mo. and a biopsy if need be. Hopefully the nodule is small and doesn't require the biopsy, but I also was wondering if you've ever had a biopsy in that location? I've had breast biopsies but not one in the thyroid area.
Did you say she *isn't* thinking hyperpara with the calcium level, due to a normal pth, but a normal pth wouldn't rule that out??
On the x-rays did you just have them as a preventative measure, or do you have some symptoms or probs with your back?
I still don't have my celiac results, I really don't know what the problem is with this lab and Dr they're idiots. Can you explain why you would have to stop the Forteo if the Celiac is positive? I've been thinking about this and can't come up with an explanation. Boy I don't know if I would want to have that endoscopy. I've had some horrible tests, but when ever someone wants to do something with my neck or throat, it freaks me out.
Well take your time getting back to me I can imagine that you're still reeling, but ecstatic with the results!!!:wave:
Good luck with the thyroid nodule... I'm having another ultrasound in about a mo. and a biopsy if need be. Hopefully the nodule is small and doesn't require the biopsy, but I also was wondering if you've ever had a biopsy in that location? I've had breast biopsies but not one in the thyroid area.
Did you say she *isn't* thinking hyperpara with the calcium level, due to a normal pth, but a normal pth wouldn't rule that out??
On the x-rays did you just have them as a preventative measure, or do you have some symptoms or probs with your back?
I still don't have my celiac results, I really don't know what the problem is with this lab and Dr they're idiots. Can you explain why you would have to stop the Forteo if the Celiac is positive? I've been thinking about this and can't come up with an explanation. Boy I don't know if I would want to have that endoscopy. I've had some horrible tests, but when ever someone wants to do something with my neck or throat, it freaks me out.
Well take your time getting back to me I can imagine that you're still reeling, but ecstatic with the results!!!:wave:
osteoblast
04-02-2007, 01:30 PM
Hi DesertBloom-I am still on overload with the health issues. While I am very pleased to have found a dr. that is an endo with bone expertise , and most of all a very caring person ; the weight of this stuff gets to me. So, I have had to take some time to reorient myself .Plus I had a scare over the weekend.
The thyroid ultra sound turned out ok-changes consistent with having hashimoto's (rough surface ) . The xray ok too. But I still have some pain, it may be a combination of tension related to all this and the way I am holding myself. I don't know. The lab tests are not back yet. The dr. did a whole battery of tests incl both blood calcium tests(total and ionized? I don't recall how the 2 are termed). I'll let you know about the calcium results and plan.
I saw on another thread that you found the Licata article. You are so helpful, I am sorry I just didn't have the focus -energy to deal with that last week. It was very draining -besides the ultrasound , I also had another dexa
and family matters to attend to.
Did you get your celiac results? The dr. here did 2 addtl tests to the 2 that I previously had. So, here are the 4
Anti GliadinAB Panel -includes Gliadin AB Igg, Igm
Endomysial AB-includes EndomysialAB IgA
TTG Ab-includes Tissue tranglutinaminase IgA
HLA DQ2DQ8-includes HLA typing for DQ2,DQ8
I included the details from the lab testing sheet, as I thought you would be interested in the specific tests done.
On the weekend , I found a hard lump on the back of my right hand about the size of a lima bean. If you go to the wrist bone and come in to mid wrist and then up one half inch , there's the bump. Of course being on forteo gets one's mind going in a certain scary direction. I have called the hand surgeon( I have a hand surgeon because of a dislocated thumb last spring). the surgeon on call said it was probably a ganglion cyst. And that was consistent with what I found on the net. I need to get in to the dr. though and just confirm that is what it is and see the course of trtmnt to be followed.Wait and see, aspirate , surgery if wait and see and aspirate don't work is what I have read. I saw various pictures on the net of dorsal ganglion cysts and they sure look like my bump and in the identical location. Also apparently cancer tumors on the hand are exceedingly rare. I just have to get the appt. set up.
I know you said you have a bump along your spine. Did you have it checked out?
Also, you asked about thyroid biopsy. I have never had one done and at this time they say I don't need a biopsy.
The thyroid ultra sound turned out ok-changes consistent with having hashimoto's (rough surface ) . The xray ok too. But I still have some pain, it may be a combination of tension related to all this and the way I am holding myself. I don't know. The lab tests are not back yet. The dr. did a whole battery of tests incl both blood calcium tests(total and ionized? I don't recall how the 2 are termed). I'll let you know about the calcium results and plan.
I saw on another thread that you found the Licata article. You are so helpful, I am sorry I just didn't have the focus -energy to deal with that last week. It was very draining -besides the ultrasound , I also had another dexa
and family matters to attend to.
Did you get your celiac results? The dr. here did 2 addtl tests to the 2 that I previously had. So, here are the 4
Anti GliadinAB Panel -includes Gliadin AB Igg, Igm
Endomysial AB-includes EndomysialAB IgA
TTG Ab-includes Tissue tranglutinaminase IgA
HLA DQ2DQ8-includes HLA typing for DQ2,DQ8
I included the details from the lab testing sheet, as I thought you would be interested in the specific tests done.
On the weekend , I found a hard lump on the back of my right hand about the size of a lima bean. If you go to the wrist bone and come in to mid wrist and then up one half inch , there's the bump. Of course being on forteo gets one's mind going in a certain scary direction. I have called the hand surgeon( I have a hand surgeon because of a dislocated thumb last spring). the surgeon on call said it was probably a ganglion cyst. And that was consistent with what I found on the net. I need to get in to the dr. though and just confirm that is what it is and see the course of trtmnt to be followed.Wait and see, aspirate , surgery if wait and see and aspirate don't work is what I have read. I saw various pictures on the net of dorsal ganglion cysts and they sure look like my bump and in the identical location. Also apparently cancer tumors on the hand are exceedingly rare. I just have to get the appt. set up.
I know you said you have a bump along your spine. Did you have it checked out?
Also, you asked about thyroid biopsy. I have never had one done and at this time they say I don't need a biopsy.
DesertBloom
04-02-2007, 04:56 PM
Hi Osteo... Take your time with all this stuff, there's no rush to figure out or assimilate it, so take a deep breath. I have so much on my plate, medically, I'm not sure how I'm handling it, but I do have to take a break and just not think or do anything about it. I had so many tests lately plus a ton coming up, it's hard just to keep up with it because it takes a lot out of you.
I hope your blood test results are postitive, are you still going to PT, maybe that would help with the pain. I'm thinking about returning myself, since my neck, back and leg pain is getting worse. I had tests done on my neck (mri, emg, x-rays) and 2 different Drs told me it's osteoarthritis, which I have in my low back, hips and knees, so it was no big surprise. I was just hoping it was something that could be fixed without major surgery, so it's depressing.
I did get the Licata article, but I can't post it since its a pay article. I ended up paying for it at NEJM and was able to download some other articles during the 24 hr access. I guess it was worth the price of $10.00.
I can't remember was your celiac test negative? It sounds like your test were more comprehensive than mine. I got mine but only had 3 different tests.
Endomysial antibody screen (IGA) = negative @ 7 (negative <11)
2. TNP screening test = negative Titer not performed
3. AntiGliadin antibody (IGG)= negative @10 (negative is <11)
I hope whatever you have on your hand is not a problem!! I'm sure it's not cancer since I never heard of it in that area. I sort of found out about the lump on my back, and after 2 tests they say it's not cancer (did not have a biopsy). It appears to be some kind of fat collection without any fluid in it so the needle biopsy was not recommended. The only problem is that it hurts real bad and I don't want to deal with it 24/7. I had a trigger point injection (cortisone) into it which only helped for 3 days and now the pain is back. If it is some kind of scar tissue, maybe PT could break it up for me but I haven't gone yet, still busy trying to find out about my breast cysts (5):eek:
I've never had the thyroid biopsy either, just 2 ultrasounds with a 3rd coming up, and so far they haven't changed in size so I haven't agreed to a biopsy.
Glad your happy with the new doc...:wave:
I hope your blood test results are postitive, are you still going to PT, maybe that would help with the pain. I'm thinking about returning myself, since my neck, back and leg pain is getting worse. I had tests done on my neck (mri, emg, x-rays) and 2 different Drs told me it's osteoarthritis, which I have in my low back, hips and knees, so it was no big surprise. I was just hoping it was something that could be fixed without major surgery, so it's depressing.
I did get the Licata article, but I can't post it since its a pay article. I ended up paying for it at NEJM and was able to download some other articles during the 24 hr access. I guess it was worth the price of $10.00.
I can't remember was your celiac test negative? It sounds like your test were more comprehensive than mine. I got mine but only had 3 different tests.
Endomysial antibody screen (IGA) = negative @ 7 (negative <11)
2. TNP screening test = negative Titer not performed
3. AntiGliadin antibody (IGG)= negative @10 (negative is <11)
I hope whatever you have on your hand is not a problem!! I'm sure it's not cancer since I never heard of it in that area. I sort of found out about the lump on my back, and after 2 tests they say it's not cancer (did not have a biopsy). It appears to be some kind of fat collection without any fluid in it so the needle biopsy was not recommended. The only problem is that it hurts real bad and I don't want to deal with it 24/7. I had a trigger point injection (cortisone) into it which only helped for 3 days and now the pain is back. If it is some kind of scar tissue, maybe PT could break it up for me but I haven't gone yet, still busy trying to find out about my breast cysts (5):eek:
I've never had the thyroid biopsy either, just 2 ultrasounds with a 3rd coming up, and so far they haven't changed in size so I haven't agreed to a biopsy.
Glad your happy with the new doc...:wave:
osteoblast
04-02-2007, 07:18 PM
Hi DesertBloom- Thank you for reminding me to slow down with all of this. The last two weeks were too frantic with dr. appts and really threw me off base. Because of back pain I needed to stop the exercises and stretches . Now I need to get back into it slowly. I guess slowly is the theme now.
No, I do not yet have the celiac panel results. It looks like you cleared that hurdle-so no major dietary changes required. That's great.
Sorry to hear no easy fix on your neck, back and leg pain . At least the drs. are not thinking the worst about the bump on your back. But sorry it hurts.
I saw an article last week about genetic research at the VAMed Center in Loma Linda and the Loma Linda University . The scientists have identified a gene termed DARC that is involved in regulating bmd in mice..They stated that an analogous chromosomal region in humans has been shown to influence osteoporosis. The gist of the article was that if they could alter the function of the gene, then there may be a breakthrough osteo trtmt. The article was at medicalnewstoday with a date of mar28. I wondered if your dr. is working on this. You said she was associated with a research lab.
Anyway if we can somehow keep ourselves together , we may be able to see a genetic or pharmaceutical breakthrough. Did your dr. ever say anything about denosumab?
No, I do not yet have the celiac panel results. It looks like you cleared that hurdle-so no major dietary changes required. That's great.
Sorry to hear no easy fix on your neck, back and leg pain . At least the drs. are not thinking the worst about the bump on your back. But sorry it hurts.
I saw an article last week about genetic research at the VAMed Center in Loma Linda and the Loma Linda University . The scientists have identified a gene termed DARC that is involved in regulating bmd in mice..They stated that an analogous chromosomal region in humans has been shown to influence osteoporosis. The gist of the article was that if they could alter the function of the gene, then there may be a breakthrough osteo trtmt. The article was at medicalnewstoday with a date of mar28. I wondered if your dr. is working on this. You said she was associated with a research lab.
Anyway if we can somehow keep ourselves together , we may be able to see a genetic or pharmaceutical breakthrough. Did your dr. ever say anything about denosumab?
montesflus
04-03-2007, 01:43 AM
OSTEOBLAST :
Hi, I wouldn't worry too much about the lump on the back of your hand. As you say yourself, it probably will turn out to be a gangliion cyst (as you mentioned). As you probably already know lumps can form in any part of the body, and do NOT necessarily have to be cancers. I have three lumps myself, one just above my right knee, one just behind my left knee, and one in my right upper arm. Several docs have looked at them - all with the same conclusion. That they're ''lipomas'' - a kind of fatty tumor (non-malignant), which, generally, cause no harm, and are nothing to worry about. Occasionaly, they may grow, or interfere in some way, but usually not. Most docs recommend just leaving them alone! ;)
All the best,
Hi, I wouldn't worry too much about the lump on the back of your hand. As you say yourself, it probably will turn out to be a gangliion cyst (as you mentioned). As you probably already know lumps can form in any part of the body, and do NOT necessarily have to be cancers. I have three lumps myself, one just above my right knee, one just behind my left knee, and one in my right upper arm. Several docs have looked at them - all with the same conclusion. That they're ''lipomas'' - a kind of fatty tumor (non-malignant), which, generally, cause no harm, and are nothing to worry about. Occasionaly, they may grow, or interfere in some way, but usually not. Most docs recommend just leaving them alone! ;)
All the best,
DesertBloom
04-03-2007, 05:57 PM
Hi Osteo... Thanks for the info on the DARC gene research, I did read something on this a couple of months ago, but it didn't explain it like the article you referenced, let me know if you see anymore on this. I read that the work they were doing at Loma Linda was some gene research for osteo, but it didn't mention the particular gene or any informative info. I'm glad you caught that at medicalnewstoday...
I always forget to ask my Dr what they are working on in the lab, so I usually get my news on that from the Loma Linda website (LLU.edu). The few times the subject comes up, we somehow end up talking about those poor rats/mice;) As far as denosumab goes, my Dr seems to think it is the most promising drug down the line, but we'll see what happens with that. I thought that if it gets approval it won't be until 2009, but of course that was just an estimate.
Don't forget to take it slow, when I push myself, it seems like that's when things go wrong. Take it easy... I hope your weather is warming up...
I always forget to ask my Dr what they are working on in the lab, so I usually get my news on that from the Loma Linda website (LLU.edu). The few times the subject comes up, we somehow end up talking about those poor rats/mice;) As far as denosumab goes, my Dr seems to think it is the most promising drug down the line, but we'll see what happens with that. I thought that if it gets approval it won't be until 2009, but of course that was just an estimate.
Don't forget to take it slow, when I push myself, it seems like that's when things go wrong. Take it easy... I hope your weather is warming up...
osteoblast
04-03-2007, 08:02 PM
Montesflus- bumps, bumps everywhere it seems. Thank you for your concern. Based on my net research I really think my bump has to be a ganglion cyst. Someone even posted pictures of their g.c. on the web and it was a dead ringer for mine. When the hand is straight out stretched you don't see it. When you cock your hand down it shows up and is a hard tumor looking thing. UGLY. I will see my hand surgeon soon but I am not as flipped out about it as when I first noticed it over the weekend. You said your bumps are fatty tissue-lipomas. My dear dear sheltie who died this past summer (god rest his loving soul) also got bumps as he got older, and they were diagnosed as lipomas. They didn't do anything about them and they didn't seem to grow in size.
osteoblast
04-03-2007, 08:35 PM
DesertBloom-The genetic research is pretty exciting. With osteoporosis being so widespread it would really be wonderful if it could be prevented/cured. On 60 minutes or something like it awhile back they did a story on a young boy maybe 12 or so. Perhaps you saw this. The boy had a bone disease that the dr. termed as the opposite of osteoporosis. His bone building function was in overdrive and he was laying on massive amounts of bone . The condition was debilitating for him and he was fracturing constantly. The dr. was working on locating the gene responsible for controlling bone building and stated if he succeeded that this knowledge would be applied also in the treatment/prevention of osteoporosis.
I agree with you about the rats and mice-we really do owe them a debt of gratitude. I wish the scientists didn't have to use them like this. It is sad. You know the adage-what comes around goes around. Well ,it makes me worry for us humans, we seem to be causing so much trouble on this planet!
About denosumab, I understand that it functions differently than fosamax etc.
It may have its own downside but I really don't want to do a bisphosphonate after forteo. Hope I spelled that right. Dr. Ott seems enthusiastic at her site re denosumab. I've got 18 months to go on forteo and 2009 for denosumab would be something to look forward to -I think. I believe you have a little less time to go on forteo- something like 14? I'll bet the drug co is just going crazy to get this out asap because of all the negative press the bisphophonates are getting.
Yes I will take it slow. Slow is now the only way to go. Nothing heroic.
The weather has been gorgeous the last few days. So, rain must be just around the corner. I did get out some earlier and may even have activated some vitamin D -my system was probably in shock.
Take care.
I agree with you about the rats and mice-we really do owe them a debt of gratitude. I wish the scientists didn't have to use them like this. It is sad. You know the adage-what comes around goes around. Well ,it makes me worry for us humans, we seem to be causing so much trouble on this planet!
About denosumab, I understand that it functions differently than fosamax etc.
It may have its own downside but I really don't want to do a bisphosphonate after forteo. Hope I spelled that right. Dr. Ott seems enthusiastic at her site re denosumab. I've got 18 months to go on forteo and 2009 for denosumab would be something to look forward to -I think. I believe you have a little less time to go on forteo- something like 14? I'll bet the drug co is just going crazy to get this out asap because of all the negative press the bisphophonates are getting.
Yes I will take it slow. Slow is now the only way to go. Nothing heroic.
The weather has been gorgeous the last few days. So, rain must be just around the corner. I did get out some earlier and may even have activated some vitamin D -my system was probably in shock.
Take care.