# Laurie/others: pancreas



## HipJan (Apr 9, 1999)

Laurie, first, how are you doing now? Update? I learned the other day, from the endocrinologist, that high blood calcium levels can actually cause pancreatitis! That answered some questions for me. Also, apparently, thyroid disease can cause major gyno. problems, high cholesterol, gallbladder issues - all of which I've had this year - and on and on. (I probably have been experiencing thyroid problems in addition to the overactive parathyroid.)


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## HipJan (Apr 9, 1999)

sorry, duplicate thread.


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## LaurieJ (Sep 3, 2002)

Hi HipJan,Generally doing ok - but seem to be very tired. Don't know if it is just winter laziness or real fatigue (I suspect a combination of the two with a heavy emphasis on LAZY). Pain level is getting a little better I think - hard to say because I get so sore from the procedure itself - have to wait until that soreness goes down before I can tell the real effect. Then when that happens, it is time for the next ERCP! I figure that the real test will come after the last one in January - the healing will be done, and no procedure to make it sore again! The middle of February should be when I get a good idea of how successful this whole ordeal has been. My doctor seemed optimistic to my husband the last time I was in (he talks to my husband but never to me!).And as far as the calcium connection with pancreatitis - that is a real association and in fact, one of the guys on the pancreatitis board had his caused by too much calcium from eating Tums (he was eating 2 to 3 rolls a day!) So if your parathyroid is out of whack - your calcium levels go up and wham - the old pancreas gets unhappy (also have to be concerned with osteoporosis with a hyper-parathyroid too). So, has your endocrinologist been able to give you an idea of what is going on? Has he/she been able to make things better? Is she looking at the pancreas as a real possibility for causing some of your pain? Boy, taking everything together that you have been experiencing it makes sense that it could be your parathyroid and the good news is, you take care of that, you should be able to take care of all the rest of your symptoms - kind of a one shot deal I would hope! (?). Nice to know that things aren't "all in your head" isn't it? even though it may take awhile to solve.Let us know how things are going with you! and thanks for asking about me - I am just biding time until my next ERCP on the 19th of December (these six weeks are definitely going faster than the previous six week wait!!!!) Hope we hear from BellyKnot, Lizzy and the others too!Laurie


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## HipJan (Apr 9, 1999)

Well, it's a different holiday season for you, I guess. But if you're like me, you're kind of used to low-key celebrations! I'm pulling for you.I only just saw the endo. for the first time last week. I'll see her again in two weeks. I did not have a good time at all during my visit (and the doc is a trip - not mean but no bedside manner). She's not saying anything much until the various results come in. She'll decide if/when I'm having bone and neck scans on the next appt. She's already talked about med for the bone loss; however, I am not up for taking it for quite a while, I will tell her, because of my months and months of bad GI problems (incl. stomach and reflux), which I don't want to upset again anytime soon. As far as the PT goes, as you know the only medical solution is surgery; I already told her, sorry, we won't be doing that in the very near future, and she said that's fine. I'm sure for the thyroid, she'll want to give me med soon. She wouldn't comment on whether the PT problem has been causing the epigastric and weird back pain (the kind that isn't necessarily pancreatitis), but she did acknowledge that it can be causing the muscle spasms. She (and I!) found it somewhat odd that just last Dec., I had low calcium levels and required IVs. Also, I've had kind of low cal/mg levels a few earlier than that too. I think some of this has been influenced by my auto. nervous dysfunction.Simultaneously with seeing her and taking my GI meds, I'm doing some "alternative" healing. I'll keep quiet about it for now, but if it works later on - and it already has helped some - I will let you know!


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## bellyknot (Jul 24, 2000)

Hip Jan,Only 1 of my GI's ever thought my problem was pancreatitis and I had to leave him because of insurance changes. Now that's been 9 years ago. The surgeon I saw recently said if I had had some ERCP stents placed then I wouldn't be in the mess I'm in now. Don't let the pancreas thing go without a definite diagnosis. All the other (2) GI's I saw just said "IBS". Deal with the pain, it's just nerves. Lucky for me I'm almost at burnout stage which may reduce pain but causes diabetes. Lately I've been having some very good pain free days so my outlook of the future is MUCH better. Hope you and Laurie are doing well lately.


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## LaurieJ (Sep 3, 2002)

Hi HipJan and BellyKnot,Thanksgiving was nice - did the family thing on thursday then craft fair on Friday, then started my holiday baking on Saturday and Sunday. I am trying to get everything done by the 19th so if I have a slow recovery from the stent procedure I can lay around without feeling guilty.I am glad that you are getting somewhere with your parathyroid evaluation, HipJan, but I am sorry that this doctor doesn't have a good bedside manner. It is so important to have all of this looked at - as a whole! Like bellyknot said, if it is a pancreas thing, the sooner you know the better. But, one step at a time. The important thing is for you to start feeling better, and I really hope you are.As far as the calcium therapy is concerned. If I remember right, there is a medication that is a nasal spray. Maybe you can try this - it shouldn't interact with your gi tract that way and cause problems there. I know it used to be out there, I hope it is still available (is it fosamax????). This may be something to consider. Otherwise there is those chocolate or strawberry chews that you can get in a drug store that are actually quite tasty (kinda fudge-like consistancy). BellyKnot,You have given me some comfort in my decision making process for undergoing the stenting procedures. Not one of my doctors has explained to me that neglecting the obstruction could lead to vast pancreas damage. I was under the impression that my stents were being done purely for a 'selfish" reason (pain relief) which has caused me to question my decision to keep on with this (very inconvenient for me and my family to be out of comission every six weeks). But, going by what your surgeon told you, if I would neglect this obstruction, I would be at risk for total pancreas destruction? Thanks for sharing this information with us. I will think about this the next time doubt enters my mind.Hope all of you are doing well. Thanks for keeping in touch!Laurie


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## HipJan (Apr 9, 1999)

Laurie, those candy chews you mention are for what? I need to help my bones, but I cannot have calcium. That's all I know right now. Will find out more later.Have been doing a bit better overall. I don't eat animal protein anymore, except an egg or small piece of fish occasionally. Thanks, Bellyknot. The endo. was planning to get records about my pancreas from my GI doc. The only record I have, though, is that a CT scan showed the pancreas looked fine. I'm pretty sure I've had pancreatitis, even if mild, on many occasions - but not for the past several weeks at all.


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## HipJan (Apr 9, 1999)

Interesting... My latest parathyroid labwork (taken 3+ weeks ago) was normal and so was my calcium! In Sept., both were elevated, especially my para. hormone (and considerably so, the endocrinologist told me). That's not typical; I get the impression that usually the PTH doesn't go down again like that.I will continued to be observed for a while. I also have to take a new test for a new finding regarding my cortisol levels. Doc doesn't know what is causing my sick back pain, except for pancreatitis when I had high calcium levels.


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## LaurieJ (Sep 3, 2002)

Boy, nothing is ever simple or easy is it HipJan. How confusing that whole issue is with the parathyroid. Maybe you are a self-healer in that area! I'd hate to think that they got your blood mixed up in one of the test....it would be too weird. I forgot to get back to you about those chew things. They are a way for people (especially women) to supplement their diet with calcium. I think they are loaded with calcium and vitamin D (?) for aborption. So this may not be a good idea for you. You may want to stick with the nasal spray, if that is still around. Are you feeling any better at all? I hope so. I am preparing myself mentally and physically for the next ERCP. It is next Friday (the 19th) so I am on the week long countdown starting tomorrow (no aspirin, etc....). Thank goodness I have a lot of christmas prep to do to take my mind off from the whole thing. But by Thursday night, forget it. I will be bouncing off the walls.....Laurie


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## HipJan (Apr 9, 1999)

I had remembered your next ERCP. I will send out good vibes! I am glad you have been able to stay busy lately.The first tests had to be correct, because first the CBC was done, showing the high calcium. Then, the PTH test was done a few days later, showing the elevated PTH. I have to assume for now that the recent labwork didn't get botched up, but I believe we will be redoing the labwork in Jan anyway. The PTH went from 129 (pretty high) in early Oct. down to something like 61 (well in range but not low) in mid-Nov. I read that it is normal for calcium levels to fluctuate a lot with PT disease (except I don't know if it's normal for PTH levels to fluctuate as well), but I get the impression that once you are diagnosed with PT disease, you are not supposed to ever be able to get rid of it (except thru surgery). I will be monitored at least every two months. I have been doing some very different alternative health treatments, so maybe they have in fact helped. I have to hope that my test next week does not indicate the presence of an adrenal tumor, which is another, rarer, cause of PT disease.The other stuff - the GI stuff and back pain - comes and goes, not as frequent or bad as before.Meanwhile, today, I managed to get an eye abrasion from working outside, I believe. I will see how I feel tomorrow a.m. I may now have to go to the eye doctor. I am such a mess.Take care.


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## cairn2cairn (Aug 10, 2003)

HipJan, This is long. I haven't been here for awhile, but just caught up on your post. You may have read some of my posts before. Yours just scares me. I was treated for IBS from April till Oct. when I changed doctors and was found to have Pancreatic cancer. In late Jan. I had back pain and some under my ribs and an ultrasound was done. A spot showed up on my pancreas, so I was sent for a CT scan and it didn't show there. Next they found that I was hyperparathyroid and removed the bad gland. The high calcium plus the codein in my meds was causing constipation. After the sugery in Late April I switched to constant diarrhea every day several times a day. My primary care doc told me I had IBS . Nothing worked and I had been slowly, but steadily losing weight. I went back to the GI who said I was depressed, that my test were all clear and to drink four Ensure to gain weight. Back to my PC doc. I asked for an MRI on my back. She referred me to a pain management clinic instead. I didn't go. In june I went back and said I thought it was time to run tests to make sure I didn't have something other then IBS. She said she was sure that's what I had. I changed to a different GI, but didn't get in to see him till Oct.10. A thorough CT scan was done. I have a tumer on my pancreas that was blocking my bileduct causing a backup into my liver. I had many ECRPs, endoscopys,tubes for drainage and stents placed and replaced in a matter of a month. The cancer has spread to my lymphnodes. It can't be removed by surgery. I am now going for Chemo every Friday. I have gone to Maine to see family and friends there, I'm going to Orlando to see oldest son and family next week and spending Christmas with rest of family in Tenn. These trips are hard on me, but I have to make them. I don't pay attention to statistics and believe I can be one of God's miracles, but don't want to take any chances either, since I don't know what His plan is for me. If you have read all of this before, I appologize. I just want patients to make their doctors aware of all these symptoms of pancreatitis or cancer: Steady weight lost for no reason, no or little appetite,irregular homone levels( thyroid and parathyroid), diarrhea which is caused by the pancreas not producing enzymes and back pain. My Oncologist said if my doctors had looked at the whole picture and traced back to the spot that showed on the ultrasound, this would have been found earlier. The cancer was probably there, but it might not have spread and I wouldn't have lost 60 pounds before trying to deal with chemo and put up a good fight to battle this beast. I hope that even if you have read this before and it doesn't apply, maybe it can help someone who might have the same experience. I wish everyone a Merry Holiday season. My tree is up, outside is glowing, shopping is done, there is a smile on my face and I am ready for a wonderful Christmas with family and friends of whom I have many. God bless us, everyone. Karen


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## LaurieJ (Sep 3, 2002)

Karen,Your post was wonderful. To the point and very moving. I am happy to see you back here letting us know how you are doing. I was going to PM you but thought that you had too much on your plate right now to be bothered with 'strangers". I am so glad that you are getting good care and treatment and that you are able to travel to your friends and family. I too believe that miracles can happen and that statistics are just generalizations - every person is different. There is so much that goes on in the human body that you never know what will work. I am sorry though about all your stents, ERCPs, etcs that you have gone through and the awful, awful time you had convincing the doctors to do a more thorough exam. Your story should be published in the medical journals. The annals of internal medicine has a column entitled "On being a patient" and I think your story should be required reading for all PCPs, GIs, radiologists and medical students. I hope so much that the treatment continues to give you relief and causes the cancer to go into remission. Are you at least feeling well enough to eat better? or is the chemo now causing weight loss? I hope you are keeping both your physical and mental strength up.Please let us know how you are doing from time to time, if you care to.Laurie


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## cairn2cairn (Aug 10, 2003)

Thanks so much for your concern and replies, Laurie. I know you are dealing with your own problems. I hope you get some relief from the pain and tiredness. My doctor gave me an injection of pancreatic enzyme last week that stopped the diarrhea. I will get that once a month. That has been a tremendous improvement in the way I feel. IBS sufferers can relate to that. I have times of no appetite, but have periods of wanting to eat everything I see. Dr. Hopkins gave me a receipe today to drink which sounds good and has lots of the nutrients and calories that I need. My blood work showed that I have become enemic since last week. I got another injection for that. I haven't felt all that tired, but they say I will feel better when the red cells come back up. I'm all for feeling better.







Well, I took Sadie, my springer spaniel, to the sitter and now have to pack. I will check back in occasionally to see how you are doing. Have a good weekend. Karen


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## HipJan (Apr 9, 1999)

Oh my goodness, cairn. What a story you have. I didn't know that was what you have been going through. What strength and courage you have. I pray you manage to have a good holiday season with your family - and of course that your treatments are successful.







I have to say that my heart is pounding a bit now, after having read your post to me, but thanks. It hits home indeed. Neither a CT scan nor an ultrasound showed anything earlier and I am not continuing to lose weight, but your post has prompted me to ask, yet again, about an MRCP to revisit the pancreas. I may put in another call to the gastroenterologist soon.


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## bellyknot (Jul 24, 2000)

Cairn2cairn,Geez, I hope you beat this disease. The pancreas is such a mysterious organ to doc's that they just kind of ignore symptoms even if they are looking them right in the face. Are you taking pancreatic enzymes every time you eat? I take Viokase and it helps with malabsortion and D. I don't have that yet but from what my doc says they can't figur out why not since my pancreas is so sclerosed and atrophied that it no longer produces enzymes. I am losing weight all of a sudden so pancreatic cancer is a worry for me also. Did you have the CA-19 test for pancreatic tumor? Please have a nice visit with your family and a Merry Christmas. You will win this fight!!


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## HipJan (Apr 9, 1999)

c2c and bellyknot - I sympathize, and to a degree can also empathize, with both of you. I think you are both going to make it too. but what you must endure - sigh.







"luckily" for me, for now, my weight loss has not been huge, and with some effort, I have been able to maintain my weight for the past 2-1/2 months. also, my pain has gone from everyday to 1-3 days/week (and occasionally none or just very mild). I DO think the pancreas is involved for me, but I know that other areas are involved too, such as my stomach and of course parathyroid. I am trying to keep on top of things, though, with the endocrinologist (who appears to be as thorough as doctors are, at least) and GI doc. talk with you more later.


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