I finally found a PCP that "gets it!"

Julie R.
on 9/23/11 12:00 pm - Ludington, MI
 Boys and girls, you do not know how important this is to me.     Because I live in a rural area, PCP's are tough to come by.     I've been trying for five years to find someone reputable, and to no avail.   I've been forced to find my own specialists, coordinate my own labs, and go to urgent care whenever something acute crops up.      An internal medicine/family practice finally recruited a new physician, and I was able to become established as a new patient.     I printed up an explanation of my surgery, with a diagram, my recent labs, my list of vitamins, etc.    She came in, sat down, and said, "What can I help you with?"   I laughed and said, "I hope you have more than a few minutes" and she laughed and said, "Absolutely."   I explained my procedure, my supplement routine, and all of the issues I needed follow-up on.    She never batted an eye at the fact that I take as much D, A, etc. as I do, and completely understood that my calcium malabsorption causes my high oxalates (you'd be amazed at how many doctors don't)      I also have migraines, and we discussed how my malabsorption could affect any potential migraine meds.   She wrote me referrals to see an endocrinologist, a rheumatolgist and a neurologist for the headaches, as she thinks I'm an ideal candidate for botox injections to treat those.      She also scheduled a DEXA scan for me.    After all this, she said, "Okay - now what ELSE can I help you with?"   She was absolutely respectful of my knowledge of my situation (many doctors are NOT) and told me to call her office if I needed any other labs done, etc.   She stated that I could stop by any time to pick up labs or call if I had any questions or other referrals. 
She was so complimentary about my weight loss, and said, "So sure, we have some problems, but if you were 146 pounds heavier, you'd have many more."    Yup.    I am SO relieved to have found someone that understands and wants to work with me!
Julie R - Ludington, Michigan
Duodenal Switch 08/09/06 - Dr. Paul Kemmeter, Grand Rapids, Michigan
HW: 282 - 5'4"
SW: 268
GW: 135
CW: 125

beemerbeeper
on 9/23/11 12:26 pm - AL
How great.  Can you clone her?

~Becky


Julie R.
on 9/23/11 12:48 pm - Ludington, MI
 I'll try to upload a copy of her and email it, Becky!
Julie R - Ludington, Michigan
Duodenal Switch 08/09/06 - Dr. Paul Kemmeter, Grand Rapids, Michigan
HW: 282 - 5'4"
SW: 268
GW: 135
CW: 125

rbb825
on 9/23/11 12:26 pm - Suffern, NY
I am so glad that you finally found a good PCP - I know how hard it is too find good doctors.  I spend years finding a good group of doctors that understand me - I have many medical problems and for years, no one wanted to listen = they felt it was all in my head.  After 6 years I was finally diagnosed with an immune deficiency, pituitary problems among other things and now I have a great group of doctors  = my PCP and Endo included.

You might want to look into Zomig ZMT for your migraines - they wont prevent them like topamax will but they help after the fact.  The ZMT part is sublingual, so you don't have to worry about absorbtion and they work so much faster than the pills.I have been using them for years, now much less often since using topamax and being post menopausal but when I do use them, they work right away.  My neurologist also told me that some blood pressure medications like verapamil at low doses and vitamin B2 work to prevent them.

Good luck with the PCP and your specialist appointments - hope the DEXA goes well, I just had mine and was diagnosed with Osteopenia for the first time

 

Julie R.
on 9/23/11 12:48 pm - Ludington, MI
 Thanks for the good wishes and Zomig advice.   Do you think they would be helpful for migraines that occur several days out of the month (mine are menstrual migraines)?   I did take Verapamil at one point, years ago, and it did not help.   The PCP also broached the subject of taking something like Elavil to prevent them, and then we both nixed that.    I didn't want to worry about weight gain, sexual dysfunction, etc, and she worried about how effective that would be with my malabsorption.

Did you know that Topamax can cause kidney stones?    

I already know that I am osteopenic in the spine and osteoporotic in the femur.   We now want to see what the trajectory was from last year.    I'm REALLY keeping my fingers crossed!
Julie R - Ludington, Michigan
Duodenal Switch 08/09/06 - Dr. Paul Kemmeter, Grand Rapids, Michigan
HW: 282 - 5'4"
SW: 268
GW: 135
CW: 125

rbb825
on 9/23/11 1:33 pm - Suffern, NY
Zomig works for any type of migraine, you basically just take it once you get it - put on your toungue and let it disolve.  Then if in 2 hours, it hasnt' gone away, you can take another one. I have never had to take a second pill with the ZMT's - when I used the regular tablets, I frequently needed a 2nd.  The verapamil helped me but it was with topamaz, so I don't know if would have worked on its own.  When I stopped the verapamil because my BP and pulse were way too low and incresed the topamax, they got so much better.  Now I hardly ever get them

I personally would stay far away from elavil - I never heard of them helping migraines either. They gave them to me for fibromyalgia and I gained 50 pounds and rather quickly.

Yes, my urologist told me many years ago that topamax can cause kidney stones but we don't that is the problem now because I have been on them for years and never had a problem with them.  I had a CT scan in March and I had no stones and then the pain started around May with the urinary symptoms starting in the beginning of July.  By time I had the CT scan in July the kidney stones were horrendous - 2 on the left were obstructing my ureters and the on the right side, the report just said multiple medium size stones.  That is incredibly fast for them to grow and that large.  I just sent a 24 hour urine to a company called Litholink - they have a website with tons of information about kidney stones and low oxylate diets and anything else you would ever want to know,  They process the urine and send the doctor a very comprehensive report of what is causing the stones and what to do to prevent them.  My Endo is convinced it is because my vitamin D level was so high but I am not convinced - 1 month before the time of the obstructing stones - it was greater than 150 - they couldn't measure it, it was too high.  I am not  sure if we will ever know because I have cut my dose since then and it is now way down to 85, so being it isn't still that high, I don't think it will be able to show the D as a cause if it was the case.

As far as the Osteopenia - I had my last DEXA scan 2 years ago and every 2 years prior to that.  The last test I was +1.2 for my spine and +1.0 for my hip.  Looking at the report it is so varied - they are reading the hip as -0.9 (which is the neck)  with the total hip being -1.1 and wards being -1.6.   The spine they read as +0.2 which is the (L2-L4)  but L1 is - 0.3 L2 is -0.8, L3 is +0.5 and L4 is +0.7.  She also did my wrist this time - they read is at -0.8 (radius 33%) but radius UD is -1.1 and radius total is -0.3.

So, my results are kind of all over the place - some normal and osteopenic. My Endo did the wrist because she said that many times people with severe osteoarthritis in the spine and even in the hips, can get improper reading on DEXA scans.  She said that they read the calcium deposits from the arthritis as bone, when it isn't.  So, by doing the wrist which most people don't have arthritis in, you can get a bettter picture in.  So, as suspected - my spine came out the best and I have severe osteoarthritis in my spine.

The doctors all were expecting my numbers to get much worse this time since I have so many risk factors - both parents (mom had severe osteoporosis before she died), dad has osteopenia, - I really don't want to list them all here - most recent and what they think put me over the edge was my 4 major abdominal surgeries this past winter for complications, so I was incapasitated for months, lost alot of extra weight and my malabsorbtion got much worse.

It is too soon for me to start treatment but I will get retested in 1 year to see how things are going.

 

Julie R.
on 9/23/11 3:54 pm - Ludington, MI
 Did your endo doc do a 24 hour urine clearance?   Is this what the company that's testing your urine doing?   The vast majority of stones in WLS'ers are oxalate.....caused by our calcium malabsorption.   I'd hazard a pretty strong guess that's what yours are too.   What's your PTH?   Did you have lithotripsy?   

My DEXA last year showed t-scores of -2.3 in the spine, -2.6 in the femur - so just crossing over into full blown.     
Julie R - Ludington, Michigan
Duodenal Switch 08/09/06 - Dr. Paul Kemmeter, Grand Rapids, Michigan
HW: 282 - 5'4"
SW: 268
GW: 135
CW: 125

rbb825
on 9/23/11 5:30 pm - Suffern, NY
My urologist actually sent me to a Nephrologist and he is the one that ordered the testing for the stones = the urologist operates and the nephrologist diagnoses.

They test for tons of things and they both told me that almost all gastric bypass patients end up with oxylate stones.  I don't remember the entire list - it was about 15 difffernt things that they test for but I do remember - calcium, calcium oxylates, phosphorus, PH, uric acid, magnsium, cystine, sodium, potassium, ammonia - check out litholink.com  - physician section sample report

My PTH was 22 but when they freaked about my D being so high, I cut it so now my PTH is 44.  I just increased my D again, so hopefully the PTH will go back down.

I had a Ureteroscopy/cystoscopy - lithotripsy stent placed on July 27th.  I am scheduled for the same procedure to be done on the other side on October 19th.

Have you started Reclast yet? I know you were considering it last we spoke?  I wish they would let me start it but they say it is too soon for me but with your numbers, I Would think you are a candidate.

 

Julie R.
on 9/23/11 11:05 pm - Ludington, MI
 I would do cartwheels from here to North Carolina if I had a PTH as great as yours!    Mine was 157 last time I had it checked.   Have the lab orders here in my hot little hand, and I'll probably go next Saturday for my big draw.    The PCP ordered an inflammation panel on me, and a bunch of other stuff.   We haven't done Reclast yet, but may have to start soon.    We haven't been able to do prior to this because my D and calcium have not been stable enough.    So it goes!
Julie R - Ludington, Michigan
Duodenal Switch 08/09/06 - Dr. Paul Kemmeter, Grand Rapids, Michigan
HW: 282 - 5'4"
SW: 268
GW: 135
CW: 125

rbb825
on 9/24/11 2:35 pm - Suffern, NY
My PTH was 119 preop, thankfully my Endo was great at testing all my vitamins, PTH and stuff long before I had my gastric bypass so I was able to work on it even before I had my surgery.  Unfortunately I didn't know about Dry D3 until I had my surgery, so I wasted 2 years on prescription D preop, which is why my PTH was so high.  In those 2 years, I only got my D to go from 16 to 36.  They even delayed my surgery until I got it over 30.  Once I went on the Dry D3, in 2 months, I went up to 97 and my PTH dropped to 47. Guess the stuff really works for me.

I have major inflamation going on in my system.  My Endo did a sed rate 2 times over the past few months and both times it came back around 50.  My ferritin was also in the mid 400's.  The same thing happened to my ferritin back in 2008-2009 after my RNY, so I know it is due to all the surgeries I have had this past year and my kidney stones.  The kidney stones were obstructing my ureters causing kidney to swell.  I just got my recent labs back on Wednesday and the ferritin went back down to 181, so hopefully some of the inflamation is going down.  I have to wait 3 months she said to repeat the Sedrate again since I am having more surgery in October for the rest of the kidney stones.  If the sed rate is still high then, she said we will have to look further to see what is causing so much inflamation in my body.

Someone posted yestarday asking about a calcium patch - do you know anything about this?  Have you ever tried this?  I know you have had a lot trouble with calcium absorbtion and if this exists, this might be an option for you.

 

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