Just Updating/Logging

Nothing great or exciting happening. The insurance company ok'd the arm splints for my carpal tunnel but haven't heard anything about the kids seeing a decent doctor yet. I forgot all about calling to schedule my physical therapy until I found the card today so I guess I still need to do that.

Retook my CT Scan and thankfully they used some kind of gastric contrast stuff (sounds really medically correct doesn't it?) instead of the barium shakes. I still got sick but only a little bit and nothing like the hell I usually go through with the barium. Hopefully this time it will show the tumor although a part of me keeps hoping it's just suddenly gone. I don't feel like being sliced open anymore. They've done enough damage and made me look hideous enough. I just want to be left alone now.

I'm sleeping more finally thanks to the new med the general doc gave me. It's nice sleeping through the pain instead of staying up because of it.

Other than that I've just felt crappy, Sis got some 24 hour stomach virus last weekend and then Bret got it this weekend so I'm sure I'll be next. With my luck it will either hit me on Solstice or Christmas. LOL. So again, nothing exciting or wonderful. I may even just go to once a month updates since things have slowed down and gotten pretty boring. I'm sure people don't want to hear about everytime I start a new stinking med or get blood taken. :)

Check Please!!

I'm so tired of bloodwork, scans, tests, pain, and just crap in general. It's beyond old at this point. Anyway- on to the medical stuff that I know everyone reads for.....

My 24 hour urine test (the one that tests for pheos) came back a little odd. Everything on it but the metanephrines were on the high end of normal and the norepinephrines were elevated at 524 (normal HIGH end is 480). So I don't know what that means except that we have to redo the test again to see what it says a second time. *sigh*

The CT Scan showed no tumor in my intestine. Of course, that is most likely because I didn't have the barium so even though it wipes me out for almost a week it looks like I'm going to have to do the barium so we can get a good look at the bugger. The scan did show a hepatic hemangioma which I guess I've had since at least May but no one bothered to tell me about. I got a little excited thinking that MAYBE this would be the answer to all my liver pain but Dr G says no so I still have no clue why every few months I feel like some witch is sticking her stilletto heel into my liver and twisting. :(

So I'm sure you've gotten the jist by now- EVERY stinking test I have done since I've been here has to be REDONE. :( We have to redo the intact PTH because after months of tests showing it being so high I'm not going to rely on one test saying it's not. We have to redo the 24 hour urine because of the results on that. We have to redo the CT Scan because it didn't pick up the tumor in my intestine. What next they redo the MEN2a test and show it was actually negative? Obviously that's not going to happen it's just getting so damn frustrating. Just when I think I know everything that's going on with my body I come here and they are telling me that everything is the exact opposite. It makes me want to run fast and far away from them.

Went to the general doctor today because the pain in my limbs is spreading and getting worse plus a bunch of other junk going on. So he said he still thinks the limb pain is neurological so we're sticking with me seeing the neurologist, the right flank pain I've been having for around eight months he feels is muscle spasms, and the getting sick all the time thing he isn't sure about. So he ordered a bunch more bloodwork to test for inflammation, arthritis, bacteria in my stomach, and orderd physical therapy for my flank pain problem. He also prescribed me something for chronic pain that is suppose to help me sleep (haven't slept much because of pain). He's also going to talk to insurance about covering the cost of my arm splints for the carpal tunnel problems.

So I'm not really much of anywhere right now. I'm also trying to get a different pediatric endocrinologist approved for the kids because the one that is on the insurance is proving incompetant already and we haven't even been given an appointment with the woman! If she really knew anything about MEN2a and my kids medical records she would know that they need to be seen soon and NO, February is not soon! >:(

I'll update again when I know something worthwhile.

Odd Bloodwork Results and Vomiting Kiddo

Well yesterday the endocrinologist called me with some peculiar results. My intact PTH came back "fine" he said. He said that it was nowhere near 1097. He also said that my calcium was actually low, calcitonin seemed about the same, and that the labs Valdosta used must have been wrong. Well to be honest, I would think since the levels were 515 in July and 1097 in October it is hard for me to believe that Quest was the lab that was wrong. I'm going to have the new general doctor redo the tests so I can get a second set. If they confirm Dr. G's results then we'll know it was a Quest Labs fluke and I've never been hyperparathyroid since the surgery. If they are different then we'll know the first tests here were wrong and they need to go back to planning on taking this thing out of my arm. As it is now Dr G has cancelled the parathyroid scan.

The CT scan has been scheduled for December 2nd at 8:30am so hopefully this will get things going on that.

Sis and I went to have our bloodwork done for the general doc yesterday and the poor kid ended up vomiting. I think it was a combination of the fasting, nerves, and it was warm in the lab. She kept apologizing and I kept telling her there was nothing to be sorry for. It's not like the poor thing could help it. She was okay after a few minutes and from now on they will have her lie down when she has blood drawn.

So now we wait for those results to come back and meanwhile the pain in my arms and legs is getting worse for some reason. The last two nights I haven't been able to sleep because it has hurt so bad. I'm trying to hold out for the bloodwork to get back but I may have to go back to Dr. M (the new general doctor) and have him check things out again. I'm also having horrible pain in my right flank that leaves me wondering if I'm getting another kidney blockage. It hurts to sit, stand, bend..... it just constantly feels like I have a backache AND someone is shoving the heel of their foot in my right kidney. Fun times!

*Update* Our bloodwork came back. Sis's TSH levels were at 15.27 (normal is 0.6-6.3) so she is elevated over double the normal. Odd because that would usually mean she would gain weight not lose it. So she is now on 112mcg of Levothroid and hopefully that will fix things for her.

My bloodwork all came back fine (can you imagine?? LOL) so I am now being referred to a neurologist and we will see what he says. If he can't find anything then I don't know what to do anymore. My pain is getting worse in my extremities and I'm afraid that if the neurologist can't find anything then no one will listen. So if you're reading this Dr M- please don't quit on me and please help me find the cause of my pain. It's real and it hurts and all I want is to feel semi-normal again.

I don't know where we stand on the degenerative disc thing but maybe that will be looked into more if nothing turns up with the neurologist.

So that's it for now. More to come after the CT scan because you KNOW how wonderfully I do with those. *eyeroll*

New General Doctor Set Up

On Friday the oldest two kids and myself went to our first appointment with the new PCP doctor. I figured it was better to get in now and get set up that way if anyone needs anything later then we'll be able to get right in. It was an interesting time to say the least.

I had called ahead when I set up the appointment and asked specifically if the doctor had experience with MEN2a. I was told that he DID and that is why I made the appointment. When the doctor walked into the room the first words he said were "Well I looked this up on the internet....." and to be honest I wanted to run right then and there. The truth is though that we really aren't going to find many doctors with working knowledge of MEN2a. It's something we can expect from Endocrinologists but not General Practioners. So I decided to give him a chance.

To be honest, he did a great job. He asked lots of questions, listened to what I said, acknowledged that I know more about this than him (which I've found is hard for alot of doctors because THEY need to be the experts even though it's just not feasible), asked for the URL to this blog, and put me at ease that he would do all he can to learn how to care for us. After that he started examining us for the "normal" things.

We found out that Sis lost 7lbs somehow so we have to test her thyroid levels and we're also running an iron test on her. We need to figure out why she's losing weight because her eating habits haven't changed at all and without a thyroid losing or gaining weight is an issue. So some bloodwork and we should know what's up with her by the end of next week.

I found out that I'm just a big train wreck. LOL. We found that some of the pain I'm having in my hands is from carpal tunnel syndrome. So I will have to wear lace up braces on both hands at night to try to eleviate some of the pain. The rest of the pain in my hands and the pain in my legs stumped the doctor somewhat. He ordered a ton of bloodwork on me to make sure it's not a deficiency somewhere first. Then he recommended craniospinal therapy (which I'm still reading on) to hopefully help with some of the pain and the constant headaches. Other than that he said that MAYBE my pain in my legs could be from Degenerative Disc Disease but we're waiting until everything else comes back first. Even if it is, I'm not worried. Heck, as much as I've been poked, prodded, cut open, and hacked up from cancer and so on this is the least of my worries. LOL.

Big B gained a pound and I should have thought to get his current thyroid and calcium levels but I didn't.

Oh yeah, I also tried to get the kids in with a ped endo and was told I had to take their records to the office so they could copy them and THEN they would contact me for an appointment after the doctor read them. *sigh* I had an appointment for the kids already with another ped endo but had to cancel because of the new insurance so I'm hoping I'm not going to be made to regret this. BTW- I did take the records to them yesterday so I should/better hear back next week because this isn't something I'm willing to play with. If the kids can't get in by the second week of December at the latest then I'm having the general doc run the bloodwork for Bret as well.

Next update- any bloodtest results or scan results.

So Far So Good- New Endo

Yesterday was my first appointment here with the new endocrinologist. We will call him Dr. G since I'd rather not share info on where I am (mother is still stalking you know...get a life woman!) and he seems to actually know something about MEN2a and the other MEN syndromes as well. That's a nice thing considering most of them say they know something and then don't. I'm not saying that against Dr. L who was my endo before but because of all the calls I've made since then looking for someone new. After a few silent breaks on the phone when you ask you tend to get frustrated.

Anyway- he was very nice, asked my history and lots of questions, wrote down things, and thinks Dr. BC is basically an idiot too. He can't understand why they left a parathyroid in my neck considering that sets me up for future surgeries right there but the whole adenoma in the arm thing totally blew him AND the surgeon he talked to away. I told him thank you because now my husband and I don't have to feel stupid or like we just don't get it. Although, Dr L probably felt the same as well. Neither of them have CALLED him an idiot but I figure that's the condensed way of saying it. ;)

Dr. G ordered a bunch of new tests including some I just had done last month. I guess they want their labs to do it and recheck the intact PTH since it's so high. So new calcitonin was ordered, 24 hour urine for pheos, intact PTH, I'm to get a parathyroid scan to see if it's the thing in my arm or the parathyroid in my neck that is causing the high PTH levels, and a CT scan of my abdomen so we can get another look at the tumor in my small bowel. He'll get all the test results back and then I'll have another appointment to go over everything. Hopefully by Christmas I'll at least have this thing out of my arm and then we can move on to other things.

I also learned something new. A way to tell if you are on too much Cortef is that you will develop red stretchmarks on your sides. I thankfully don't have any but I thought it was a neat new thing to learn. Dr. G also said that the dosage I'm on for Cortef actually is a small dose (10mg) so I shouldn't worry too much. He agreed with Dr L that my adrenal crisis problems pretty much show that the little piece of the left adrenal cortex they left isn't working. He also said the same thing as Dr. L on the weight gain too - my chances of losing much weight are pretty slim because of all this crap. :(

So it will be a few weeks before all the results are back and then we will go from there. Hopefully by the end of three months everything will be done and I can try to get on with life for awhile.

The oldest two kids and myself have an appointment with a PCP on Friday. It's just a new patient visit so we can get set up with someone. I am also going to see what they say about getting help for my neck pain here. I'm hoping that acupuncturists are covered on our new insurance because I've tried just about everything else. It IS nice to finally be someplace that has a variety of doctors so we actually get a choice. Dr L did a great job but Moffitt in Tampa.... them I could have done without!

Note To Self: MEN2a + Long Move = VERY Sick Me.

That pretty much covers it doesn't it? I always thought long moves were hard before but this was my first one since diagnosis and surgeries. I think I want my adrenal glands back thank you very much. ;) WOW, talk about feeling wiped out! It took me a full week to recover and even know I spend most days with a migraine.

Before we moved I had Dr. L order labs for me so I would have fresh results to bring to the new doctors here. I wanted something current to go off of and wasn't sure how long it would take to get things rolling here with a whole new support system. Well, I received both good and bad news.

The good news was that my calcitonin levels are currently at 17. Yes that's a ONE and a SEVEN! I couldn't believe it! As sick as I've been the last few months I honestly expected it to have started climbing again. So what that means is that if it will just stay at 17 and not go any higher then there is that very slim chance that I could be cured of the medullary cancer. It's not something I'm getting my hopes up over but it's a nice surprise that I am enjoying right now. Also, my thyroid levels are stable and doing well.

The bad news was that my parathyroid levels (intact PTH) were very high. I went from the 515 to 1035 since July. This of course means something is VERY wrong. I probably should have run back down to Tampa and had it taken out but I can't help but feel like that would be a bad idea. The bottom line is that they screwed up BIG TIME! They put an supposed adenoma (and I say supposed because I'm wondering if they even tested it) in my forearm. Just let me say- an adenoma is a benign TUMOR okay? So they took out two bad parathyroid, left one good one in, and the proceeded to chop up this TUMOR and stick it back in my arm. Adenomas are usually the primary cause of primary hyperparathyroidism. So all they did is take the culprit out of my neck and give it new housing in my arm. WHAT KIND OF IDIOT DOES SOMETHING LIKE THIS??? Ugh!

So anyway- things are getting worse and I can't help but wonder if they stuck parathyroid cancer in my arm. I am going to have the doctors here take it out of my arm hopefully VERY soon then what will happen is one of two things. One- it will just test as an adenoma, it will be out, and my levels will drop. Two- they will take it out and test it and it will be cancer which will mean I will need chemo and rad therapy. It will also mean I will be suing because that would just be beyond disgusting. I'm not a sue happy person by the way I just don't think others should have to suffer from something like this again.

Tomorrow I have an appointment with the new endocrinologists. I had an appt set up with one I had emailed with but he is not on our new insurance so I hope beyond hope that this other practice knows what they are doing. If not of course I have the option here of looking for someone else. I promise to post afterwards and tell how that goes. The kids also have an appt next month with a ped endo BUT she isn't on the insurance so I have to start over. *sigh*

I also just want to thank "W" from Australia for posting a comment on my last post and letting me know that people are reading. It honestly means so much and I will try harder to keep this updated.

I honestly can't gather my thoughts enough to make a good post but I wanted to at least post a few things.

First is Sis- she is doing so well on the Levothroid. There haven't been any headaches since we switched from Synthroid. It's so wonderful. I let Dr L know because she was interested in seeing if it would work.

Second- I had them draw some blood today for calcitonin levels, intact PTH, and thyroid panel. We are moving at the end of the month and I figured it would be a good idea to take all those with me to the new endo. I also wanted it because I've been getting pretty sick lately and I have an idea what's going on but figured I better check to make sure.

Third- I had a really nice surprise today. After my bloodwork a lady stopped me in the hall asking if I was... well ME. lol. I told her yes and she introduced herself as Carol Hutchinson (I hope I got that right, if not let me know. ;) ). She is the supervisor of the lab that the kids and I have gotten all our bloodwork done. Carol told me that she has been reading my blog and even stayed up until 3am one night reading. She told me that reading this has given her a new outlook and perception on how things are for patients. She even teared up some and it was truly touching.

I was honestly in awe knowing that not only had she read this blog but it also touched her. THAT is what I've been hoping to do all along so it was nice knowing I'm accomplishing that. I told her I wanted to apologize for how upset I got in the beginning because I know now that it wasn't her lab's fault when bloodwork was messed up and that it was Quest Diagnostics that kept messing up. I also told her that the girls who worked in the lab are great. Sis adores Theresa and if it wasn't for her I honestly think Sis would still freak out everytime she has to go for bloodwork. I'm really thankful for all they've done.

So to Carol and the girls in the lab at the Valdosta Specialty Clinic... thank you for this past year. I appreciate the job you have done and all your help. Thank you also for letting me know that the medical community is reading this blog. I hope you found your way back after I gave you the new URL, Carol and thank you again.