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Post by cherylbaker on Dec 17, 2015 19:09:27 GMT -5
So i had my 18 month post op appt with my surgeon and an disappointed in what he had to say. First a recap in 2000 at 400lbsi jad an rny. Lost 260lbs. In 2008 started strugglong with vitamin deficiency and gained weight than got arthritis and gainef more. On 1/1/14 i weighted 299lbs. Determined not to hit 300lbs i went on the post op diet for weight loss surgery and lost 20lbs. Got approved and had the ds 7/8/14. Started having vitamin deficiency again and than my pth went skyrockeying. At my appt i weighted in at 139.6lbs. I am fairly active. I feel strong. But my calciun and d levels are not great and my pth is currently 248.. (this is down from the high of 298 but higher than the 109 it was earlier this year) My surgeon wants to give me more bowel.. not sure what exactly that means but really would rather not have more surgery. He of course says seei told you you shoild have had the loop (he wanted me to do loop abs in insisted on full ds). Looking for advise guidance any kind of words of wisdom. He thinks i am too skinny. I am happy at the weight i am at and really would like to lose 5 more lbs but he says no. Sigh. . Never thought a day would come when a dr tells me to gain weight ha ha ha. . Seriously though. Is there something else i can do to get my body to absorb the calcium and d and get my pth inert control. I Already have osteoporosis. . Sigh
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Post by OnMyWay2Thin on Dec 18, 2015 14:01:38 GMT -5
Hi Cheryl,
If only your labs were in order, things would be good all around, I think. How tall are you? You weigh 139.6, I weigh about 125-129 and I'm 5'8 1/2". So I'm about 10-12 pounds less than you and I'm not about to gain or at least I don't want to at this point. If you're a lot taller than me, then maybe there is concern. My doctor had given me a prescription for creon if I kept losing. I would think your doctor would try that first before additional surgery. My understanding is that it makes you absorb more. My labs have been fairly normal, I'm usually on the low end of iron but I am about to get my labs done after the holidays so I'll see if any deficiencies have developed. You actually had your surgery the day after me so we are out the exact same amount. I think it all depends on your height, it's hard to judge weight and whether it's good or bad not knowing how tall you are. For example at 122, I was too thin. I had no trouble gaining a few pounds, though...
Looking forward to your response.
Enjoy your day, Kelly
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Post by jpcello on Dec 18, 2015 14:19:03 GMT -5
"giving you more bowel" means he wants to lengthen your common channel. That should be the absolute last resort in my opinion. I agree with Kelly about trying creon if you need better absorption.
From WebMD: Creon contains digestive enzymes to help break down and digest fats, starch, and proteins in food. It is used in conditions where the pancreas cannot make or does not release enough digestive enzymes into the small intestines to digest the food (e.g., chronic pancreatitis, cystic fibrosis, cancer of the pancreas, post-pancreatectomy, post-gastrointestinal bypass surgery).
Also IMHO ignore what the doctor says about "you're too skinny". You'll probably have a little bounce back gain so don't worry too much about that. I've had about 20 pounds bounceback from my lowest weight (140). If I stopped eating carbs I could lose 10 pounds, which would make me happy.
What's your vitamin regime? How much and what kind of calcium and D are you taking? Are you taking adequate amounts of dry D and the right kinds of calcium?
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Post by aa on Dec 18, 2015 15:42:22 GMT -5
Yes, I'd lile to know the amounts of calcium citrate and vit. D3 you're taking, too.
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Post by cherylbaker on Dec 18, 2015 21:32:08 GMT -5
"giving you more bowel" means he wants to lengthen your common channel. That should be the absolute last resort in my opinion. I agree with Kelly about trying creon if you need better absorption. From WebMD: Creon contains digestive enzymes to help break down and digest fats, starch, and proteins in food. It is used in conditions where the pancreas cannot make or does not release enough digestive enzymes into the small intestines to digest the food (e.g., chronic pancreatitis, cystic fibrosis, cancer of the pancreas, post-pancreatectomy, post-gastrointestinal bypass surgery).
Also IMHO ignore what the doctor says about "you're too skinny". You'll probably have a little bounce back gain so don't worry too much about that. I've had about 20 pounds bounceback from my lowest weight (140). If I stopped eating carbs I could lose 10 pounds, which would make me happy. What's your vitamin regime? How much and what kind of calcium and D are you taking? Are you taking adequate amounts of dry D and the right kinds of calcium? Well see that's the thing. I am NOT too skinny. I am only 5ft 2inch. To be normal bmi i need to weight 136. I realize he is only concerned because of my malabsorption. As far as my regimen i have tried all sorts of regimens.. i currently am using the patch and that has helped a little. Proor to that i was taking massive dosses of a,d and 2000 calcium. Tried tablets and powder. Im done listening to the surgeon. His last division was to take 1 50,000 d 1 day a week fir 12 weeks. I was taking twice that everyday so that's useless. I assume the creon will cause weight gain? I really don't want to gain any weight. . Despite what he says i am not to skinny. I am thinking of trying upcal. I heard ppl say good things about it. I am getting new labs done tonorrow and when they come back i am going to ask fir help on what ppl suggest i do to help. I am glad you guys agree more surgery should be last resort. My endo guy says that pth is bad but no need to junp off the cliff yet. He has given me 6 months and going to check again. Hopefully i can get things under control by than. My pth was 18 and calcium was 9 in January. In June my calcium dropped to 8.4 but my pth jumped to 108. In August my calcium was still 8.4 but my pth jumped to 298. Last week calcium was still 8.4 but pth went down to 248. I dunno how calcium dropping .6 would cause my pth to go from 18 to 298.. that just seems insane
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Post by jpcello on Dec 19, 2015 6:55:13 GMT -5
Cheryl - Two separate discussions - weight and vitamins. With regard to the weight, please try to forget about the BMI numbers. They're not important. The important questions are how do you feel and are you healthy? It's hard to forget about numbers, because we've spent our entire lives thinking about numbers.
If you end up having to take the creon and if you do gain a few pounds, won't it be worth it to be healthy? That's also where the DS comes into play. The tool will continue to work. Does it slow down, I don't know. I've had my DS for almost 13 years. The tool still works - I know for a fact that it does. It's what you do with the tool that matters.
Now let's talk about vitamins. You're not taking nearly enough D or calcium, hence the sky high PTH. Have you looked at Vitalady's vitamin regime? She has one specifically designed for DSers.
For example, I take 150,000 units of Vitalady's Dry D3 PER DAY (one 50K pill 3x per day). I also take Vitalady's Calcium Citrate - each pill contains 1035 mg of calcium citrate (300 mg elemental). I take 9 of them per day (3 pills 3x per day). That works for me. My pth and D are normal but unfortunately I have osteoporosis anyway. I blame it on a combination of the DS and genetics.
This regime works for me but it may not work for you. Look at her suggestions. It may take some tweaking, as it does for everyone.
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Post by cherylbaker on Dec 19, 2015 8:32:32 GMT -5
I was taking 100,000 d but was scared to increase it since the drs all thought 100,000 was outrageous. I have heard of ithers who take more but still. . There the drs. Yes if it really helped i would be ok with a few lbs but it scares me. I know i shouldnt expect to be normal bmi but it would be cool . I should be happy to pass for normal .. not weighting over 200lbs is soo great and i am sooo close. Physically i feel great. Not weak or tired. I have a physical job and walk to and from work. I have arthritis so i want to be as light as i can be. Will see what the labs say. Should be back in a week
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Post by aa on Dec 19, 2015 12:49:15 GMT -5
I take 100k of Vit D3 M-F and 150k on weekends. Remember, we are different than average people so what would be horrid for others is OK for us. I also take over 4000 mg. of calcium citrate per day.
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Post by cherylbaker on Dec 19, 2015 14:06:16 GMT -5
Seriously 4000 units of calcium... I was thinking of just overdosing on hords and see if it helps . But the drs keep dating if your not absorbing your just flushing it down the toilet..
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Post by newyorkbitch on Dec 19, 2015 14:51:14 GMT -5
Seriously 4000 units of calcium... I was thinking of just overdosing on hords and see if it helps . But the drs keep dating if your not absorbing your just flushing it down the toilet.. Cheryl you are being very foolish. Get on 150,000 IUs dry D every day, and 2 Citracal max four times a day. Now. Unless you want your bones to start breaking. You have been told this here many times. Also, how many grams of protein are you eating a day? How many grams of carbs? How is your fluid intake? Are you taking your other vitamins - A, E, K, iron, etc etc? I want you to find vitalady's DS regimen and post it here. It is frustrating when you ask for advice, don't take it, don't bother researching, and then come back with the same (or worse issues), again looking for advice. Take the advice you are given here. Also - you need to do some reading about calcium and PTH and their interrelationship. Go do some googling about that and post what you find here. Staying healthy as a DSer takes work, research, thinking, making an effort to understand your issues, and executing appropriately. Here, I'm doing you a favor. From now on you do your own research. Read this whole page and pay particular attention to what's in the Quick Facts box. parathyroid.com/parathyroid-function.htm
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Post by caprice on Dec 21, 2015 8:32:36 GMT -5
You're doing more than one person a favor. I knew there was a connection, but hadn't researched it enough. And, right now, I'm good, but this is great to have. Thanks very much for this link!
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Post by aa on Dec 21, 2015 12:59:30 GMT -5
Seriously 4000 units of calcium... I was thinking of just overdosing on hords and see if it helps . But the drs keep dating if your not absorbing your just flushing it down the toilet.. Actually, 4095. This is on the advice of my osteo. specialist and my bloods reflect it.
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Post by jpcello on Dec 21, 2015 13:02:44 GMT -5
Yes, I'd lile to know the amounts of calcium citrate and vit. D3 you're taking, too. I take 150,000 units of Vitalady's Dry D3 PER DAY (one 50K pill 3x per day). I also take Vitalady's Calcium Citrate - each pill contains 1035 mg of calcium citrate (300 mg elemental). I take 9 of them per day (3 pills 3x per day).
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Post by cherylbaker on Apr 6, 2017 14:23:57 GMT -5
Here i am over a year later and i am still fighting this battle. Increased my d and no change and the specialist yelled at me saying its a waste to take 150k d. I have gained 5lbs and my levels are the same. All labs right around low end of normal. Pth still over 200. Am at my wits end with this. Any thoughts?
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Post by Melinda on Apr 14, 2017 9:18:29 GMT -5
Are you taking dry D? The "specialist" doesn't know what she/he is talking about because she/he has obviously never had a DS. It WILL increase if you're taking the 50,000 iu every single day, it just takes time. I take 8 CitraCal's a day. Make sure you're taking Calcium Citrate. 5 lbs is nothing. I wouldn't worry about that right now. You can simply increase your protein and water and decrease carbs and see that fall. For me, cutting out sugar and fruit does it.
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Post by janeclarks on May 9, 2019 8:24:08 GMT -5
A high opinion about yourself and who you are and what you do and basically a love for yourself is also one of the things that people often miss or have too little of in today’s society.
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