My GI is semi literate.

[Lesley]

Correspondence with him is a not so funny joke. I wish there was an alternative!

I wrote this to him:
Has had such an awful effect on my quality of life. The esophageal pain, the nausea, the bowel and stomach problems that are always present, the dietary restrictions are hard to live with. I never, ever feel well.
I can't take pain relief meds for my recent fx vertebra and the new disk rupture because I get horrible constipation. I have to relieve it, and then often get diarrhea. At the very least I have a day or 2 of shooting pains and cramps and constant BMs with no control every week of so.
The pain is intense, as you can imagine.
Now I have been having recurring pains in the lower right quadrant of my abdomen above my groin.
I have been reading some articles, notably this one:
http://www.wjgnet.com/1007-9327/full/v17/i36/4063.htm
I have been wondering if there is any chance some of this could be related to my parathyroid.
Do you have any thoughts about it?

This was his reply:
You Have had 10 calcium done since 2006 , and they Are normal, The cholesterol is elevated. She should follow a low fat, low cholesterol diet. Repeat test in 6-12 months. Calcium or high calcium Can cause digestive problems , but Not in you case .. T Teller

At this point my doctor recognizes that I have a very high pain tolerance level, as do the pain management doc and the physical medical doc. These last few weeks have not been fun.

This guy will not relate to anything. And English he can't write!

[LindyLou]

Ok, so you have had you Ca checked 10 times. Has your doctor tested your PTH as well? Ca, PTH and vitamin d should be checked all with the same blood draw. There are quite a few who have normocalcemic hyperparathyroidism. You cannot diagnose this with calcium only.

Linda

[LindyLou]

After reading my reply, I feel like I should explain a little further. Calcium and PTH work on a bio feedback loop. When one is high the other should be low. For me, my calcium numbers have been 10.2, 10, 9.8 and 10.5. According to normal ranges, all but one reading has fallen within range. The problem is that ranges are not age adjusted. No one over 40 should have a calcium of 10 or higher. And if your Ca is in the high range then your PTH readings should be in the 20's. My PTH numbers were also high/high normal and my endo thought my numbers were fine. I told him that although I understood why he thought that I respectfully disagreed with him. He then offered to have a sestamibi scan (radioactive uptake) but through educating myself I declined as this type of scan is not supposed to be used for diagnostic purposes. It is used to tell a surgeon where to possible look first during an operation. It was then he offered to refer me to one. I went to see the surgeon a few weeks ago and he was skeptical at first but had more labs drawn. Two weeks ago I received a call from his nurse telling me the diagnosis is now confirmed for primary hyperparathyroidism. This is an awfully difficult disease to diagnose and it has taken a lot of persistence on my part to get to where I am now. I should be hearing from him this week with a date for surgery. Don't give up the fight Leslie until you are properly tested and calcium tests alone are not enough information to rule that out.

Linda

[Lesley]

Can't you come here, Linda, and make the arguments for me? You saw his answer. He's born here as far as I know. White, no accent. BUT cannot write English. Seems to me he can't read and understand it either.
First, he is diminishing the illness altogether. Not a word about what the illness is doing to me, and probably to his other patients if he were able to pay attention. No encouragement, helpfulness , NOTHING. Bedside manner? 0 minus! FAILED! Big time.

No recognition of the other problems which are causing intense pain - for example: I am sorry to hear of your back injury. A combination of that pain + that caused by MC cannot be pleasant......

Something like that even in his inexorable English would sort of hint that he acknowledges his patient. Nothing!!!

And then..just like he did with PPS he dismisses this idea out of hand. Takes small parts of the problem and doesn't look at it as a whole.

BTW - what is your profession? You are so knowledgeable about physiology and interaction.

I am SO discouraged. Even if he is right and I don't have it, there is nothing to stop him being human except that he is a GI!

[JLH]

Why can't you fire him and see someone else?

[Lesley]

2nd one already. The GI department at Kaiser is not exactly over flowing with great brains. The one before him was better than he has proved to be. I will have to see what I can do.

[LindyLou]

First off Leslie, I would not go to a GI doctor for this. Endocronologist themselves have a hard time diagnosing this disease as like microscopic colitis it's pretty rare. Only about one in 100,000 are diagnosed with it so the average endo has never encountered it. I found out about mine because after many years of MC, and negative Enterolab results I wrote down all of my symptoms and testing I had done and made an appointment with my primary care doctor for a consultation and asked what am I missing. Have we explored all avenues? It was he who ordered the PTH test and when it came back over range I started doing my homework trying to understand the results. The website parathyroid.com provided me with a wealth of information to get started as did a closed facebook group (closed meaning unless you have been accepted as a member of the group no one else can read what you post). It took 3 different endo's before I found one that at least had limited knowledge of this disease. I'm finding that many either self refer themselves to a surgeon who specializes in this field or use their primary doctor for a referral. Up until last February, I worked in the field of Metrology (the science of measuring) but have been unable to work since then as this disease has robbed me of my memory and physically I have very little stamina and tendon pain that makes it very difficult to walk. The good news is that once this problem is surgically corrected I am considered cured and my bones will regrow. It is so important to do your homework when selecting a surgeon as if one doesn't check all 4 glands the cure rate falls to 80%. Read parathyroid.com! It is published by Dr. Jim Norman who has his own wing at Tampa General Hospital. He is a world renowned surgeon who has dedicated his professional career in educating about this disease. Let me know if there is anything I can do to help.

Linda

[Lesley]

Linda thank you! I will pursue this. I will check out my calcium levels, and if they came in at 10 or over I will ask my PCP to order the PTH test if ask for it. If that comes in high I will work from there.

I know how you feel. My memory has gone (though you sound like you are operating at a much higher level than am I), and walking is difficult since the last fall, which caused the fx.

I cannot get my MC under control. It's been over 2 years already since dx, and I have felt lousy and lousier for all that time, and of course, more before dx.

I really, really appreciate your input.

[LindyLou]

Hi Leslie,
The evaluation of parathyroid should be done with the same blood draw as your calcium. This gives a more accurate snapshot in time as to what your levels are related to hyperpara. If you have hyperparathyroidism, your blood levels will bounce around as the parathyroid is malfunctioning - basically it has been taken over by a tumor and your body can no longer regulate itself. It is also a good idea to have ionized calcium and vitamin D levels checked. I'm currently on the diagnosis merry go round. Heard back from the surgeon that since discontinuing my hydrochlorothyazide that my levels have fallen - don't know what the actual numbers are yet but he wants me to supplement with vitamin D 2000iu's/day as it is now below normal. The problem is that for me taking vitamin d is like taking poison! I feel so much worse on it. That was the main reason I had to quit working as it exacerbated my condition. There is an app created by the surgeons at Tampa Bay General Hospital called Calcium Pro that you use to track your lab values and it then compares that data with data from over 20000 patients to indicate whether you have primary HPT. For me after I've input at least 6 rounds of lab results it shows it is very likely I have this disease. Done screwing around! My husband is almost insistent I go to Tampa. There is a non refundable $1750 consultation fee but the 4 endocrine surgeons that work there only do this type of surgery and they are world renowned. I'm fortunate that I do not have any kidney issues yet but the tendon and bone pain at times is almost unbearable for me. My PCP prescribed Norco for me and when it gets bad I will take it. This has been a double benefit for me as it does help with the pain and also "trumpets please" I have not had diarrhea in over a week. This is a first in over 5 years . If there is anything I can do to help Leslie, please let me know.

Love,
Linda

[gluten]

Hi Linda, I noticed in your post that you were taken a thaizide. I was taking 20 mgs/day of the same drug a for ten years. Then my new PCP increased it to 40 mgs/day. I was getting severe muscle cramps, muscle weakness and heart palpatations. To control the side effects my PCP put me Inderal. Finally 3 years later by accident they did a blood test and checked my potassium level and it was so far below the normal range they called in an emergency script for potassium choride. The drugs lower potassium, magnesium and zinc levels. Two years later I had a hair analysis and 6 months after taking the trace element supplements all the drugs were discontinued. Everyday, while taking the thaizide I had a banana to increase my potassium levels. When, the potassium is low it sets up a electroltye imbalance as sodium fills in for the potassium. Jon

[LindyLou]

I've had 2 complete metabolic panels done in the last three months and everything looked fine except the PTH , calcium and vitamin d. One one if them my blood protein was also over range.

[LindyLou]

Something else you may want to have a look at Leslie. Although this addresses celiac disease specifically, I consider MC to be celiac of the large intestines.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2653933/

Linda