jfunk
New Member
Posts: 18
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Post by jfunk on Jan 29, 2014 13:44:15 GMT -5
Hi everyone. I'm almost 5 years out from having my DS. I've done really well up until recently. I'm having an awful time with this parathyroid. I have my blood drawn every 6 months and the pth just keeps climbing. My blood work showed that my vitamin D is perfect as well as the other vitamins. Calcium is also normal. I also notice that I've gained weight in the upper abdominal area all of a sudden. I've just started getting migraines, constipation, and now kidney stones. I feel like I'm 80 years old. If anyone has any advice....I would greatly appreciate it! Thanks
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Post by newyorkbitch on Jan 29, 2014 13:46:34 GMT -5
How much calcium and D are you taking, and what forms?
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Post by newyorkbitch on Jan 29, 2014 13:47:48 GMT -5
Also, a brief explanation: if you're not taking enough calcium, your body leeches calcium from your bones in order to keep your calcium level up. The byproduct of this process is elevated PTH. So even if your calcium level is normal, that does not mean you are taking enough calcium.
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jfunk
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Post by jfunk on Jan 29, 2014 14:35:06 GMT -5
Yes...I am aware of how pth works. I take 150,000 iu's a day of vita lady D3 - 50. My D is at the high range of normal. I take at least 3000mg of calcium citrate a day. I am stumped. What more can I do?
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Post by newyorkbitch on Jan 29, 2014 15:09:12 GMT -5
Have you seen an endocrinogist?
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jfunk
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Posts: 18
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Post by jfunk on Jan 29, 2014 15:55:02 GMT -5
Yes I've seen an endo. She dismissed it. Telling me to up my vitamin D and calcium and didn't want to see me again. My pth has gone up even higher since increasing the vitamins.
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Deleted
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Post by Deleted on Jan 29, 2014 16:33:48 GMT -5
Yes I've seen an endo. She dismissed it. Telling me to up my vitamin D and calcium and didn't want to see me again. My pth has gone up even higher since increasing the vitamins. Find another one who will listen to you. I hate Dr's who are dismissive aholes. |
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PeteA
Full Member
Posts: 221
Surgery Date: 4/15/13
Surgeon: Dr. Phillip Schauer
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Post by PeteA on Jan 29, 2014 20:02:05 GMT -5
Have you ever gotten a Dexa Scan? If this showed an issue maybe the endo would get off their butt. Although, I'm wiht Scott - this one sounds like a loser.
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jfunk
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Post by jfunk on Jan 29, 2014 20:26:29 GMT -5
Yes, I have a dexa scan every 18 months. The last scan shows that I have osteopenia. I was told to take more calcium.
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Deleted
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Post by Deleted on Jan 29, 2014 20:37:33 GMT -5
Have you ever gotten a Dexa Scan? If this showed an issue maybe the endo would get off their butt. Although, I'm wiht Scott - this one sounds like a loser. I went to and endo back in 2006 time frame and I thought he was going to put me on a pump. Nope, he told me I just needed to south beach and the my wife and nutritionist were probably fat too. I was the bigger man, but I so wanted to tell that POS what to do and then beat him to a pulp for being a jackhole. Seriously Jfunk.....do not take no for an answer and go see another Dr. You have to be your own best advocate and fight for the treatment you deserve. Good luck! |
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Post by newyorkbitch on Jan 29, 2014 21:31:44 GMT -5
Have you had a thyroid workup, and a parathyroid workup? Any scans? I hate to say it, but given the amount of calcium and D you're taking, there might be something else going on other than malabsorption. Go see another endocrinologist.
Also, get jpcello to chime in. She has some issues and she is also very vigilant about taking her supplements.
FYI to everybody - sometimes even with vigilance, stuff goes wrong.
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jfunk
New Member
Posts: 18
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Post by jfunk on Jan 29, 2014 22:29:54 GMT -5
I've had hyperthyroidism since i was 13 and have been on synthroid to control it. Recent blood work showed that my thyroid was good. I'm starting to see that even with proper vitamins and diet...something has gone wrong. I just wish someone could figure it out. I've insisted on being referred to another endocrinologist. Finding someone in Toronto with parathyroid experience is difficult.
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jfunk
New Member
Posts: 18
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Post by jfunk on Jan 29, 2014 22:31:58 GMT -5
I've had no scans because the Dr insisted that with secondary hyperthyroidism, it's a lack of vitamin D and calcium. All I've had is blood drawn to measure pth.
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Post by newyorkbitch on Jan 29, 2014 22:38:57 GMT -5
Hopefully when you tell the next endocrinologist that increasing your D and calcium didn't work, he/she will listen and do some further testing and help figure it out.
When my PTH was elevated relatively early on, the endocrinologist I saw did a full thyroid and parathyroid workup, including scans, to rule out stuff.
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Post by fullhousemom on Jan 29, 2014 22:48:48 GMT -5
Do you take magnesium? I've been doing a lot of research about magnesium for some other issues, and was surprised at how important it is for calcium absorption. Google magnesium and calcium absorption. There's a lot of interesting information out there.
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Post by aa on Jan 30, 2014 9:41:51 GMT -5
I had a very high PTH for the first couple of years postop. It regulated itself after a few years, but during that time period my endrocrin. did a ton of tests including an ultrascan of my neck area. He also had me do a scan (at the hospital) with a large machine that comes down from the ceiling and hovers above your neck. (I took plenty of valium). I agree with the others. I think if you're having issues, you should seek out an endocrin. who would look into more tests. (If you're in the NY Metro area I can give you the name of the endocrin. I saw at that time).
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Post by jpcello on Jan 30, 2014 10:51:10 GMT -5
Have you had a thyroid workup, and a parathyroid workup? Any scans? I hate to say it, but given the amount of calcium and D you're taking, there might be something else going on other than malabsorption. Go see another endocrinologist. Also, get jpcello to chime in. She has some issues and she is also very vigilant about taking her supplements. FYI to everybody - sometimes even with vigilance, stuff goes wrong. Not me - my PTH, D and calcium are all spot on (just check less than 2 months ago). I take massive amounts (150K D + 9 Vitalady Cal/D/Mag combo). My dexa is trending down (osteopenia) but I don't necessarily blame it on the malabsorption, especially because my numbers are all good. I think my issues are genetics and age. I've recently added Bone Up and extra K2. |
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Post by jpcello on Jan 30, 2014 10:52:08 GMT -5
Do you take magnesium? I've been doing a lot of research about magnesium for some other issues, and was surprised at how important it is for calcium absorption. Google magnesium and calcium absorption. There's a lot of interesting information out there. I do also take an extra Magnesium every day as well (besides what's in the Vitalady Calcium/D/Mag combo). |
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Post by newyorkbitch on Jan 30, 2014 10:57:30 GMT -5
Ah Janet, I was thinking of your osteopenia and I got the details wrong...
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jfunk
New Member
Posts: 18
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Post by jfunk on Jan 30, 2014 16:27:36 GMT -5
I do take magnesium with my calcium. Unfortunately I'm not in the United States and our Dr's here in Canada are lacking the knowledge of the duodenal switch. Hopefully my next endo will listen to what I have to say.
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Post by sheanie on Jan 30, 2014 20:05:02 GMT -5
What are your exact lab values of D, calcium and PTH? Without knowing those, any advice is just peeing in the wind. We've all heard "oh, my labs are all normal" when, in fact, they are not. Please post back what your numbers are.
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Post by newyorkbitch on Jan 30, 2014 20:44:52 GMT -5
Also - it's not necessary for your endocrinologist to be familiar with the DS - he/she just needs to understand that you malabsorb....if your lab values are truly normal, and if your consumption of supplements is already high...you may need an endocrinologist to work you up for issues that may have nothing to do with malabsorption.
My endocrinologist worked me up for everything , before assuming that my malabsorption was the cause of my low values.
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Post by muffinsmom on Jan 31, 2014 1:51:13 GMT -5
Are you taking a PPI? Reduced stomach acid affects calcium absorption (for WLS patients, normies, anyone) because calcium (and iron too) requires SOME stomach acid in order to be properly absorbed. I take 40 mg of Protonix a day - so far so good, but it worries me.
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Post by goodkel on Jan 31, 2014 2:27:08 GMT -5
Also - it's not necessary for your endocrinologist to be familiar with the DS - he/she just needs to understand that you malabsorb....if your lab values are truly normal, and if your consumption of supplements is already high...you may need an endocrinologist to work you up for issues that may have nothing to do with malabsorption. My endocrinologist worked me up for everything , before assuming that my malabsorption was the cause of my low values. Exactly. Just like pre-op when doctors were wrong to blame every ailment on fat, so too post-op that every physical ailment is not caused by the DS. If vitamins aren't working, there is something else going on there. Find any endo who will listen to you. |
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Post by goodkel on Jan 31, 2014 2:56:33 GMT -5
Just brainstorming here.
I know they are far from Toronto, but it couldn't hurt to phone these DS practices and ask if they know of any endocrinologists in your city who are familiar with malabsorption issues:
Laurent Biertho, MD
Simon Biron, MD
Frédéric-Simon Hould, MD
Odette Lescelleur, MD
Stéfane Lebel, MD
Picard Marceau, MD
Simon Marceau, MD
Laval Hospital
2725, Chemin Ste-Foy
Quebec, PQ GIV 4G5
Phone: 418-656-4810
Olivier Court, MD *
McGill University Health Centre
Royal Victoria Hospital
Bariatric Program, Room S 6.24
687 Pine Ave. West
Montreal, PQ H3A 1A1
Phone: 514-934-1934 or 1-866-263-4414 toll free
Fax: 514-843-1693
Web Site: Oliver Court, MD
I was also told that the way we malabsorb is very similar to the way cystic fibrosis patients malabsorb. Perhaps you can find an endo with experience with that disease so he'll be better able to understand your anatomy?
I'm not presuming that your issue is with malabsorption because it appears that that is not the case. It is just that an endo familiar with our type of malabsorption would be less likely to shrug off the problems you are having.
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jfunk
New Member
Posts: 18
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Post by jfunk on Jan 31, 2014 13:30:43 GMT -5
My D is 70. My calcium is 7.5. My pth is 10.5 which is an increase from 6 months ago at 8.5.
Thank you for all of your input. I agree that when they can't find answers to something, they blame it on the surgery instead of taking further action. I am going to research and look at reviews of endos that were recommended.
This has been an extremely rough year for me. I had a stillbirth 8 months ago and after researching the parathyroid...I have learned that this could have been the cause. Of course when I brought it up to endo she dismissed it. But in the next breath said that she had never in her 30 years of practice come across a pregnant woman with high pth.
Again, thank you for taking the time to respond. It's a wonderful community.
Jenn
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jfunk
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Posts: 18
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Post by jfunk on Jan 31, 2014 13:33:05 GMT -5
Goodkel....they have just started doing the ds in a hospital near toronto. My family Dr is going to contact the surgeon for advice. Maybe he will have an endo suggestion.
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Post by newyorkbitch on Jan 31, 2014 14:00:15 GMT -5
Jenn I am so so sorry for your loss. There are no words.
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jfunk
New Member
Posts: 18
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Post by jfunk on Jan 31, 2014 16:49:55 GMT -5
Jenn I am so so sorry for your loss. There are no words. Thank you. I'm starting to see the sun shine once again. I'm getting there. |
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Post by Leonie on Feb 1, 2014 0:18:01 GMT -5
Jenn, it is an honour to meet you. You ar e such an example of someone who is working super hard at doing the right thing. Yet life keeps throwing you curve balls. BUT, you are still reaching out and taking charge.
We are here with you, and together we will find the answers. That is my prayer.
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