Bad luck part II

[beth22]

I really think someone must have put a curse on me sometime. I was planning on doing the home FT tomorrow evening as my daughter is spending the night. She's been fine with GI issues for months. She had a cold about a month ago when I first wanted to do the transfer and the doctor said to wait. Then she had her period. Now two days ago, she went out to eat and came home and had watery D. So, of course, now I have to wait again. She says she is fine, but still have to wait at least a few weeks, probably more like a month. I will see the SIBO specialist this Thursday and run it by him. I took the curcumin for two days. First day no problem. Second night I was fine, but next day got all kinds of discomfort and gas, etc, but no D. I don't know if it was the curcumin, so I will try again tomorrow night and see if the same thing happens.

Now comes the interesting part. I have had problems with high PTH (parathyroid hormone) levels and low vitamin d - borderline calcium at times. So, the endocrinologist said that this can happen sometimes when the vitamin D level is low and to get it up and see what happens. Well, it is finally in normal range apparently, but the PTH is still high. He wants me to go for a nuclear scan - something called a sestamibi scan where they inject you with a radioactive tracer and then see if they can see the tumor on the parathyroid gland. Some of the symptoms that I had prior to c diff seem to indicate that anyway - racing heart, high BP, C. I'm wondering if that isn't throwing things off. When I take calcium, which I started to lately (TUms) I feel better and my bms are better. I have not been able to tolerate dairy for about 4 years now and maybe since I don't get it in my diet, my body is trying to use it from my bones. That could be why I ache all the time - not sure. Doctor said fibromyalgia. The same week, I was told that I have neck problems - like spurs that hit on a nerve and are causing my shoulder and neck pain. I could have surgery for that as well, but I think I will pass on that. Still have problems with the hand and thumb in particular and have not gone for the cortisone shot. My other alternative is surgery too.

So, what do I do? We don't have too many bridges around here to throw myself off from - if it weren't for the fact that this is really ruining my quality of life, it would almost be funny, especially the timing of everything.

So, do I have this scan done and have them give me the radioactive stuff. The doctor said it is Thalium, which I had for a heart scan once, but online it says it is something else for that type of scan. I am thinking I should do it, as they saw the possible tumor about 7 years ago and maybe if they take it out, my body will start to heal with other things as well. At least it will stop the osteoporosis from going at such a fast rate.

Meanwhile, I'm still really stressed out. Job - lots of extra work. My mom's house is closing escrow - almost finished clearing things out. Left the dryer outside - got stolen. Mom is getting frailer all the time, but she still recognizes me. I'm not thrilled with the group home where she is, but it is better than most I guess. I wish none of this were happening, but I can't change it. Wish I felt better, but I don't. Except for this board, there is really no one to talk to about it. My husband is tired of having a sick wife. He doesn't want to deal with it and I can't say I blame him, but it makes it very lonely and hard.

Anyway, thanks for listening if you read this far and if you have any insights into this type of scan, let me know. Brittany - I think you had one before your surgery.

[getwellsoon]

I know exactly what you mean about the hubby getting sick of us being sick. Just when I think things are ok I come up again with a relapse way out from my meds or I start with the nausea,D,M etc. I'm going through a spell right now and I know how you feel since I have other issues also. I would definitely have the scan, its one thing you can check off the list if it turns out good and if not you could at least have it addressed. I'm so sorry about your Daughter. Do you really have to wait so long? Maybe ask the GI and they will say only need a week or so to see if she is alright. I'm sorry about the added stress of your Mom, I can relate here also. My mom is having knee issue now, she can barely walk and won't take any meds for pain etc. She is nutso about her liver, getting addicted etc so she suffers. I am 400 miles away and can't really help her. My brother is there but you know guys can be slack sometimes. Anyway, point is I can so relate to you Liz. Hang in there. I know you are sick of hearing that also but it's all we can do. I wish I could give you some insights into the scan. Hopefully if Brittany had one she can bring you some valuable info. I will keep you in my prayers, you have suffered enough and its time for some good news. I will be calling the Dr. for an appt. today as even the Zantac isn't keeping the nausea at bay right now. I'm scared but keeping it together for now. Hope we both feel better soon. Carol

[amyc]

I'd just get the parathyroid out and see if it makes you better. Have you found a surgeon who does the minimally invasive surgery?

[beth22]

Yes, I do have a surgeon. He is one of the top surgeons in the country for breast surgery and does thyroid and parathryroid too. The other endocrinologist that I saw in Spring, told me about him, but I was already his patient, so when I went for my yearly breast exam, I talked to him, showed him the reports, and he was ready to do the surgery, but at that time my internist nixed the whole thing and had me take the vitamin D. This time I decided not to say anything to my internist. He is going out of town for a few days this week and I have a call into this new endocrinologist that I think is much better anyway to ask him if we can just do the ultrasound (having it done Friday) and skip the nuclear scan, as I read that it doesn't show the tumors half the time anyway because they are behind the thyroid. Brittney wrote back to me and said that is what happened to her and when they did the surgery, the tumor was there. Will see what he says. If I have surgery, I would like it on this year's insurance coverage and not have to meet a high deductible again.

[getwellsoon]

Sounds like a good plan Liz, I would go for it and just get the ultrasound. I would definitely do the surgery before you have to meet another deductible. Good luck and hope you feel better. Carol

[beth22]

Well, more bad news. The rheumatologist that I saw a few weeks ago called with my test results. The tests for arthritis and such were ok, but for some reason my liver enzymes were elevated and one kidney function test as well. I'm not sure why. It's the first time. He said if I didn't drink a lot, which I don't that could have affected the kidney function. But, the liver enzymes is new. He asked if I had been exposed to hepatitis recently - I haven't. Also something called ANA was low - to do with the immune system.

I remember others posting about elevated liver enzymes with c diff. I'm assuming that with intestinal inflammation maybe this is possible?

I also was told by the GI SIBO specialist today that the parathyroid can affect my GI system and might be part of my problem. I am seeing the surgeon next week to discuss surgery. I know that the parathyroid being elevated can affect the pancreas and I do have elevated lipase sometimes and I wonder if that in turn can affect the liver?

I'm really depressed at this point. It's as if starting with the c diff my whole body is falling apart. I'm only 58 - what is going on? All the stress with my mom's situation of course did not help. But, the house is closing escrow by Monday, so that will be history. The problem is this weekend I have to get the rest of the stuff out. That whole situation has had me really, really stressed out. I guess I will have to go to work part time next year. I don't even know what all of these physical changes mean. Will there be a next year? Can't believe it all happening to me. Doctor said to buy a different type of curcumin and try again. He said I definitely have been on Pepto Bismol for way too long. Maybe that affected my liver - who knows.

[getwellsoon]

I'm so sorry at this latest bad news, it never seems to end for you. I think a lot of folks with CDiff have elevated liver enzymes. I would do the blood work over and see if it comes out the same. I gave blood once years ago and got a letter that my liver enzymes were very high. Naturally, I panicked and went to my PCP and got more blood work and it came out fine. It could be a glitch or just some random thing that affected the test results. I think getting the surgery is a good idea and it might bring all your numbers into line. Once you get the house sold that is one thing off your full plate. Liz, I will keep you in my prayers that you get answers you need and you feel better. Hang in there, don't let one blood test send you over the edge. Carol

[beth22]

Thanks, Carol. It's just too many things all at once. Like Bobbie always says, c diff was the gift that kept on giving. It has ruined my entire immune system, I think. Meanwhile, I have to keep on going to work, trying to work my appointments around my schedule, take care of my mom's stuff. It's like I wind up taking care of everyone else, but not myself and this is the price I am paying for it. After this house gets taken care of in a few days, I will try to rest some.

And of course, there is always the timing. The doctor couldn't have called two days earlier, when my primary doctor was still in town and before I saw the SIBO specialist. They need to talk to each other. Now it will be Nov. 19th when the doctor will return. Oh well, I guess if they fax my results, my primary can interpret them as well. I hope so. TGIF at least. I don't feel like being at chool today!

[getwellsoon]

I know Liz, I feel the same. I don't have the severe symptoms you have but 18 months in with cdiff I still am not back to normal GI wise. It is the gift that keeps on giving. I don't feel like the same person anymore, I have GI issues and I never had them before so I know its from the CDiff. It has ruined my guts also. You get some rest this weekend and hope you feel better and get some good news for a change. I see you have a question out about the liver enzymes. I seem to remember Jo had that but i might be wrong. Also a few other folks on here. I don't think I had that but I know some of my bloodwork was off. Hope someone can chime in with some helpful info for you. Take it easy and relax now, Carol

[beth22]

So, I am following up with my internist tomorrow - was able to get an appt. I am feeling really nervous about those liver enzymes. Never had that in my life and it can't be good news. What a week! Yesterday I got stuck in a parking lot elevator for a half hour with another woman and had to wait for the fire department to get us out. Almost got hit by a huge SUV too. Today I spent the entire day clearing out my mom's house. Have to go back now after dinner to get a few more boxes, but pretty much it is DONE! Wednesday I see the surgeon about the parathryoid and also going for the abdominal ultrasound.

Anyway, prayers would be welcome. I don't know what to think anymore. I'm totally stressed out and tired.

[GGB]

Beth, I have been reading your posts and am so sorry things have been so rough for you. I have really appreciated all the advice you have given to so many posters on this site. I pray you get some answers and will be much better very soon...........

Sylvia

[Bobbie]

- Same here, Beth. You & I have the same "klutchy" luck. Maybe it will change in our OAP (UK -Old Age Pensioners) age.

Best of luck. You've had too much stress for 2 long. But think of all the things you've accomplished - daughter married, mother's house & her belongings moved, your constant supervision of her. You are an amazing woman. Think "Look what I've done" and tell others about it.

I'm sure many of our spouses are tired of our problems. My husband "runs out to do errands' 3 or 4 times a day. The only ones who really understand us are our fellow suffers.

[beth22]

Update: So, I saw my internist and he did not seem too concerned about the kidney test being off - said the main one was ok. His subspecialty is nephrology, so I will have to trust him on this one. The liver enzymes are a different matter. I had an ultrasound scan done on Wednesday last week and it did not show anything new. I have these benign liver tumors called hemangiomas that I have had for years. The GI's secretary called and said to come in, so I will go tomorrow. Something about running more tests. Will find out when I go.

I also saw the surgeon regarding my parathyroid and he is not sure it needs to come out, as this time my calcium level was on the low side. He sent me for follow-up blood work to see the levels again and said I may be really low on calcium and the pth is high because it is pulling it out of my bones to compensate. Might be true - I have not been able to eat any dairy in 4 years now. I am supposed to call and see what those results are and then most likely have the nuclear scan (sestamibi scan) to see if the tumor shows up on the parathyroid.

Meanwhile, escrow closed for my mom's house, so that is done with. Now I just have to figure out what to do with all her stuff piled up in my living room! She is not doing too well lately and the group home wants me to contact her doctor tomorrow. Never a dull moment.

So, I'm just taking it one day at a time right now. Went out to eat last night and this morning loose bm. It seems when I eat something kind of salty, this seems to happen.

Has anyone had D or looser stools from eating saltier foods?

[getwellsoon]

Liz, I never noticed salty food giving me D. I never could see any rhyme or reason to my stomach upsets. I also go to the Dr. today, hope he can give me some insight as to why I can't shake this nausea and M in stool. I'm glad you got your Moms house done and hope the news isn't bad today regarding your Mom. It never ends. All you can do is take it one day at a time. Hope we both can get some answers today and can get some peace of mind. Hang in there and I will also. Carol

[beth22]

Yes, Carol, we all need some answers, but more often than not, the questions just keep on coming and answers are few and far between. I had nausea post c diff for quite a while. In fact, it still comes and goes sometimes. I have it a little this morning. With me it seems to be acidity that causes it, or so I think. I wish all my doctors would just talk to each other instead of one shipping me off to the next because they either don't know or don't want to figure it out as it doesn't fit into the norm. I'm still planning on doing the FT. It's been 2 weeks since my daughter had the D episode - just one time, so it must have been something she ate, although she says she can't drink coke anymore - I guess the caffeine does it. I figure I have nothing to lose at this point, so I am going to go ahead as soon as we can figure out when. She does not live that close - about an hour or more driving.

Good luck on your appt too!