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Medical Forum / Diseases and Disorders / Arthritis / September 2007Anyone know what this test is?
During my last hospital stay, the doctors drew a boat load of bloodwork, some of which were specialized tests that had to be sent out to mayo clinic labs. One of the tests was a TPMT (thiopurine methyltransferase)? Any of you familiar with this test or had it done before? The doctors are thinking I may have something called CVIDS (common variable immunodeficiency syndrome?) So far, the tests that have come back abnormal are high sed rate and high crp which are always high for me, CH50 162 (ref=52-128), IGG 460 (ref=620-1520), IGM 32 (ref=60-370), and then the TPMT came back at 15.3 (ref=15.1-26.4 .... 15.1-26.4 = normal, 6.3-15.0 = heterozygous for low TPMT, <6.3 = homozygous for low TPMT) ) and had a side note that says: In this sample, the TPMT is at the very low end of normal range. This activity does not allow reliable designation of this patient as either a carrier or non-carrier for the TPMT mutation. We suggest careful monitoring this patients CBC. They thankfully were able to rule out lupus, which they were really thinking I had, thank goodness!!! Echo-cardiogram also showed some plueral effusion which hopefully will explain why, as of late, I have been retaining sooooo much fluid! Uggggh, never a dull moment in auto=immune land, huh?!!! . . . . Donna . . . . 1. ANGELS EXIST, but some times, since they don't all have wings, we call them FRIENDS...... 2. J.K.M.A. I am not familiar with it, but there is some info here: http://www.labtestsonline.org.uk/understanding/analytes/tpmt/test.html Rose @}>->-- Being educated means that rather than fearing the unknown, one seeks to understand it. RB Please remove "Ima" to reply. I haven't heard of that Donna - isn't it nice to know you might be special - again - NOT! I have had a different week as well. For the last 6 weeks I have had increasing muscle weakness and incredible fatique. Struggle to get up in the morning, afternoon, evening, 11:00 etc. Long naps and basically going for breakfast and then nap, snack for lunch at home, nap and then dinner and struggle to stay awake long enough to go to bed when the diarhea and nausea would keep me awake until 1:00. Just felt crappy. So whined to my doctor and told him to fix me this week. He tooks vials of blood and they decided my potassium level is really really low. The HCL and the steroids together deplete potassium but the spiroton increases potassium. Both have reduced my feet to 1/2 their size so I can wear shoes but I guess the spiroton didn't increase the potassium enough to counteract the other two. ( the instructions for the spiroton said take no high potassium foods such as potatoes, bananas, avocados). So off the HCL and on high potassium foods. At least it wasn't the diabetes or the thyroid or the PML which was the really scary thought. So what are they doing about the plueral effusion?? Thank goodness about the lupus - you didn't need that. So when is the next rituxan or are they going to wait a bit now?? Never a dull moment. I am still going on my quilting trip next week. Figure I will be a bit better by then! (and if not will still drag myself - need it badly!) Parksville was great - the kids kept me going, lots of naps, used my scooter lots and actually got down to the beach 3 times and sat in a lawn chair and supervised. It is the most incredible beach. Miles and miles of sand. Did some walking in the sand with my cane - was pretty tough but felt good to do. But collapsed in fatique after and about every 3 days during. Some mornings was just not sure if I could get through the day but always did. Now I know the reason for the incredible weakness and fatique. Crap I hate this darn disease - want to go on strike. I want dullness. I don't want to be special. Choose your sign and we will all march (or crawl or simply have a sit-in). Kelly > During my last hospital stay, the doctors drew a boat load of bloodwork, > some of which were specialized tests that had to be sent out to mayo [quoted text clipped - 38 lines] > > 2. J.K.M.A. >I haven't heard of that Donna - isn't it nice to know you might be >special - again - NOT! [quoted text clipped - 43 lines] > > Kelly Bless your heart and everything else come to think of it. I have felt that way and ya know what? I probably will again. The good days are a blessing. I sometimes think,,,,, just put this foot in front of that foot and keep moving. Harv Kelly, it sounds like you have this virus/flu that is going around. It carries the muscle weakness, flaring, fatigue with it. Do you also have allergy symptoms? IF so it is the virus. It also has the nausea and diarhea with it too. By the way I have it and it last a long time. I heard it can last up to 6 months. It is good that it wasn't diabetes or thyroid or PML. I am also glad about it not being Lupus Donna, I forgot to say that when I answered your post. Sounds like you did have alot of fun at Parksville. I hear that with the darn disease strike. I will join you. The dr i have to see since mine split, is a jerk with a capital J and there is no way I can go back to see him or change all my meds like he wants me too. Hey if it is working, why mess with it. I chose the sign of We have chronic issues and pain, help us. ;-)  SignatureLove and Hugs to all Jo the squirrely one > I have had a different week as well. For the last 6 weeks I have had > increasing muscle weakness and incredible fatique. Struggle to get up in [quoted text clipped - 40 lines] > > Kelly Nope no virus - it is low potassium levels which is quite serious and is being treated promptly now thank goodness. I already feel a tiny bit better. What does he want to change in your med regime Jo and for why?? Hugs, Kelly > Kelly, > [quoted text clipped - 64 lines] >> >> Kelly ok glad it is getting better already Kelly. He wants me off the albuterol. He wants me on advair and I don't want to go there, I have heard too many that are on that one have had surgery to drain the fluids off their chest and many many hospital stays because of repeated respiratory infecitons. It even says that on the commercials about the respiratory infections. What the heck ever happened to the other meds they used to give you for asthma. He wants to take me off the atenolol and put me on a bp med that has a diuretic in it. With my dehydration issues I can't take a diuretic. He says the diflucin will kill me so he wants me on nystatin. before I could tell him why I am not on nystatin, he went on to something else. I am allergic to nystatin. He is really arrogant, and loud and thinks he is Dr. God. He wants me off all the meds the other dr gave me that seemed to work till just this last week. My bp is going back up again, but then I have been in massive pain. I did have the bp down to the 120's over 60-70's. I told him I can't afford all these med changes and prices of the new meds he wants me on. I have some meds coming thru drug companys that I can get them for cheaper or free and he wants to switch all these now. SignatureLove and Hugs to all Jo the squirrely one > Nope no virus - it is low potassium levels which is quite serious and is > being treated promptly now thank goodness. I already feel a tiny bit [quoted text clipped - 4 lines] > Hugs, > Kelly A doctor who doesn't listen to his patient is scary. I can't remember why the switch, but this does not sound like a good situation. Joan >ok glad it is getting better already Kelly. > [quoted text clipped - 22 lines] >I have some meds coming thru drug companys that I can get them for cheaper >or free and he wants to switch all these now. My dr that they had at the clinic left. So now they have this dr. I didn't have a choice, no other dr it appears wants to work there. SignatureLove and Hugs to all Jo the squirrely one >A doctor who doesn't listen to his patient is scary. I can't > remember why the switch, but this does not sound like a good > situation. > > Joan > ok glad it is getting better already Kelly. > [quoted text clipped - 22 lines] > I have some meds coming thru drug companys that I can get them for cheaper > or free and he wants to switch all these now. Hi Jo,,,, If you did not tell the doctor that you already know that you are allergic to a different medicine,,,,,, You and your doctor have big problems that may cost you your life. I am sure that I have mis-understood what has taken place. I really do not think it is the right thing to do to tell someone that they are prayed for all the time but you are prayed for everyday and many of us worry about what takes place in your life. Here is to better days,,, hmm, better nights too. Harv Harv, that one was my fault. So you got me there. I have a long allergy sheet that I carry with me and have given to them and they have it on the front of my chart. But I had forgotten to list that one till he mentioned it and then I remembered that right before I got boasted out by Kaiser, that I had that reaction when they tried me on that med. So I have to add it to the list now. But hey this is the brainy person that forgot she was allergic to fish and had some, just to remind her why she was not having fish anymore. ;-) Thanks Harv for the prayers. I know they have been coming because I can feel what the Lord is doing for me and I know that prayers are making the difference. Thank you all for that. I do so appreciate it. SignatureLove and Hugs to all Jo the squirrely one > > Hi Jo,,,, If you did not tell the doctor that you already know that you [quoted text clipped - 6 lines] > Here is to better days,,, hmm, better nights too. > Harv Jo, Does Dr. God have a supervisor? Could you go to that person and explain what you've told us? If there is no supervisor, what about talking to the Dr.'s nurse? Nurses usually have a little more time to listen to a patient - she/he could update the allergy chart & add comments about reactions to medications and/or other illnesses (like the dehydration issues) so the Dr. can see why changing your meds would be a problem. Of course, sometimes you just have to yell at the doctors to get their attention. Give that a try, if nothing else works! Shannon No there is no manager around there. This is a new clinic that opened in April. Most of the other clinics connected with them are in San Jose and I don't know how to contact them. The nurse there lies alot. found that out yesterday when talking to her about getting some meds refilled that now it looks like they won't do. So I am totally out of luck with my meds now too. Called around on the list of free and low income clinics that I found online and none of them are free or low income and half of them shouldn't even be on that list, like heart drs, pain drs, etc. So whoever did that list, was just putting down drs and not making sure they were free or low income. Cant afford to get that upset with them at this point since my bp is up again. Just have to let it go I guess and hopefully can find some clinic or something that will help me. SignatureLove and Hugs to all Jo the squirrely one > Jo, > [quoted text clipped - 10 lines] > > Shannon Hi daughter, > The nurse there lies alot. found that out yesterday when talking to > her about getting some meds refilled that now it looks like they > won't do. So I am totally out of luck with my meds now too. Have you tried https://www.pparx.org/Intro.php GrampaHugs, Alex, -- Any information is included for informational or entertainment purposes only, is based on my personal experiences & is an expression of my opinion. **************************************************** * Love radiating from 45.10n x 93.30w M/SP Mn * http://home.comcast.net/~apbarna/ * http://goldenmist.org/ahr_faq/index.html * http://goldenmist.org/grampahugs/ * http://goldenmist.org/ **************************************************** yeah I have but it is up to having a dr refill them now and I don't have a dr. Can't find one I can afford either. SignatureLove and Hugs to all Jo the squirrely one > Hi daughter, > [quoted text clipped - 20 lines] > * http://goldenmist.org/ > **************************************************** The HCL and > the steroids together deplete potassium but the spiroton increases > potassium. Both have reduced my feet to 1/2 their size so I can wear shoes What's HCL? ((((((((((((((((((((((donnag)))))))))))))))))))) i don't know anything, except that i care about you and am as glad as you are that lupus was ruled out, sweetie. kate During my last hospital stay, the doctors drew a boat load of bloodwork, some of which were specialized tests that had to be sent out to mayo clinic labs. One of the tests was a TPMT (thiopurine methyltransferase)? Any of you familiar with this test or had it done before? The doctors are thinking I may have something called CVIDS (common variable immunodeficiency syndrome?) So far, the tests that have come back abnormal are high sed rate and high crp which are always high for me, CH50 162 (ref=52-128), IGG 460 (ref=620-1520), IGM 32 (ref=60-370), and then the TPMT came back at 15.3 (ref=15.1-26.4 .... 15.1-26.4 = normal, 6.3-15.0 = heterozygous for low TPMT, <6.3 = homozygous for low TPMT) ) and had a side note that says: In this sample, the TPMT is at the very low end of normal range. This activity does not allow reliable designation of this patient as either a carrier or non-carrier for the TPMT mutation. We suggest careful monitoring this patients CBC. They thankfully were able to rule out lupus, which they were really thinking I had, thank goodness!!! Echo-cardiogram also showed some plueral effusion which hopefully will explain why, as of late, I have been retaining sooooo much fluid! Uggggh, never a dull moment in auto=immune land, huh?!!! . . . . Donna . . . . 1. ANGELS EXIST, but some times, since they don't all have wings, we call them FRIENDS...... 2. J.K.M.A. > ((((((((((((((((((((((donnag)))))))))))))))))))) i don't know anything, > except that i care about you and am as glad as you are that lupus was ruled [quoted text clipped - 44 lines] > > 2. J.K.M.A. Donna: I know about CVIDS! I have that. It has to do with low t-cells. No nothing like aides. What happened with me was that I would get sick constantly and then no antibiotic would work. You have to have enough of these t-cells to be able to have antibiotics work. So I had to have I.V.'s of Gamma. Weekly had to go in for 3 hours and sit in a chair and get this. Very expensive. $10,000.00 after insurance. The insurance companies want to call it "experimental" and so we had to sue them to get them to pay. I later got divorced, lost insurance and take lots of vitamins, including prenatal vitamins - I'm 51. If I get sick and can't shake it fairly quickly then it all starts again. Of course, it's good I'm well right now and for the past few years because I couldn't afford it. Now when I get a cold -it won't go away by itself, it always then goes into something else and I get 1000mg of Rocephen a day for a few days and I'm well again. When I was having the gamma, I would have dizzy spells and "high" feelings etc. Hope you feel better. NotYet1121 > Donna: > [quoted text clipped - 16 lines] > > NotYet1121 I had a friend that had to have that. It was really hard on his kidneys but did whatever was needed for his condition. He was a VN vet and he and his wife would stay at my house when he would have a couple of week stay at the Vet. hospital here in Houston. He also had larger than a golf ball sized lumps under his skin. Agent Orange.... Sorry,,, just thoughts from the past from a different time. Harv Yikes, Harv, sounds absolutely dreadful!!! . . . . Donna . . . . 1. ANGELS EXIST, but some times, since they don't all have wings, we call them FRIENDS...... 2. J.K.M.A. Not Yet, Do you mind if I ask, how long ago it has been since you were diagnosed and also how long ago it has been since you had to have the infusions? From what I have been told, thus far, if I do in fact end up having the CVID, I have been told that it would require a 3-4 hour infusion once a month, thankfully not once a week!!! Also, I would have to do some serious checking into insurance before going for the infusions. No way could I ever afford even one infusion if they are that expensive!!! I so appreciate you sharing what you have so far! Thank you very much, it really helps to have someone else who has been down this road before! . . . . Donna . . . . 1. ANGELS EXIST, but some times, since they don't all have wings, we call them FRIENDS...... 2. J.K.M.A. Donna, still wishing the best for you in all things. Whatever you have to do, may it be a blessing for you. SignatureLove and Hugs to all Jo the squirrely one > Not Yet, > [quoted text clipped - 11 lines] > I so appreciate you sharing what you have so far! Thank you very much, > it really helps to have someone else who has been down this road before! > Donna Whoops, that should have read: echo-cardiogram showed a pericardial effusion NOT a pleural effusion! My bad, sorry about that! . . . . Donna . . . . 1. ANGELS EXIST, but some times, since they don't all have wings, we call them FRIENDS...... 2. J.K.M.A. > Whoops, that should have read: echo-cardiogram showed a pericardial > effusion NOT a pleural effusion! My bad, sorry about that! > Donna > . Just know that there are plenty of people that did not even see the mistake. We are just happy to be reading what you have to say on the board. Harv Donna don't know what that is but sure hope it turns out well for you and they can fix it so that you get better. SignatureLove and Hugs to all Jo the squirrely one > > During my last hospital stay, the doctors drew a boat load of bloodwork, [quoted text clipped - 26 lines] > Uggggh, never a dull moment in auto=immune land, huh?!!! > . > Donna Here's the information from the Cincinati Children's Hospital: http://www.cincinnatichildrens.org/NR/rdonlyres/64593B1E-6C52-4084-B41A-2F3DB26E CCB6/0/tpmtparentinfo.pdf I did try to copy & paste and was unable. Basically it is a test for a certain gene which shows the side effects of certain drugs. I remember this one came up for me recently and wondered. Good luck! Vickie B. |
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