I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Pre-Dialysis => Topic started by: Katherine on August 16, 2015, 11:06:41 PM
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Hi All,
I have a dilemma. There have been several calls my neph has made that have been questionable. I've been reassured by other professionals of his competence, but am starting to wonder about getting a different doc. During one visit he was prescribing Vitamin D. I questioned this due to my extremely high calcium and pth levels. He then realized his error, and retracted the script. That could have seriously messed me up, although I realize it was a human error. The visit before last my extremely high pth levels were briefly discussed again. I asked what harm was occurring in my body because of this. He didn't provide a direct answer. At that visit I stated clearly that in spite of mild nausea, if it would help to drop the pth levels I'd gladly endure the side effects of Sensipar. He said it wouldn't be good to take more of it for other reasons, but didn't state what those were.
At my last visit on Friday, he said my pth levels were still far too high, and wanted me to consult with an endocrinologist regarding a parathyroidectomy. He mentioned something about veins turning to concrete. I repeated that I was interested in upping the Sensipar if it made sense, and he agreed. This could have happened 3 months ago.
I'm frustrated, and feel that the 4-5 minutes he spends providing eye contact away, from his computer monitor, while he spews 'medicaleze' just aren't cutting it. He's incredibly nice and upbeat, and the renal educator on the team is stellar. I just don't think he hears me, or explains things. I know he's overworked, and am guessing they all are.
I'm afraid of making waves that will reverberate if I change nephs. I'm afraid, since he heads the huge renal care clinic, that I won't be able to find a neph outside this clinic that takes the low-income insurance I have. I'm afraid that getting a second opinion would indicate to him my dissatisfaction with his care, and that I'd be treated less well. I'm feeling that the treatment circles can be a bit cliquey, but hopefully I'm wrong about that.
Any thoughts? Advice? Anyone had a parathyroidectomy?
Thanks so much!
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Katherine,
I don't know how it all works where you are but are you able to get a second opinion, ie meet a new nephrologist for advice about your situation, without your current Neph knowing this? Do you have a copy of all your lab results so that you can inform another Neph of your history? It sounds like you may be restricted from being able to do this.
Here in my system, I am at liberty to do this and have actually done this. I see two Nephs regularly but admittedly, I have not informed either one that I am seeing someone else. I don't feel it's their business to know who else I may be seeing and I always feel more confident about getting a second opinion on any matter I have to contend with than just relying on the advice of one expert. It doesn't mean it becomes necessarily easier, I have to admit, but I do feel safer this way.
If that is not possible in your health system, then it does make it hard. When I only had Neph 1 and felt dissatisfied in the way you do now - I confronted him and told him in no uncertain terms that I am not happy with the medical attention I am receiving from him. It was a bit of an explosive meeting I have to say but it did seem to work. I now get great attention not just from him but also from his staff. Sometimes we just have to stick up for ourselves and demand better treatment. I'm not saying this is a guaranteed approach that will yield better results in all cases but it has worked in my example.
I have not been prescribed Sensipar but do have about DOUBLE the normal level of PTH levels with normal calcium and phosphate levels. I am taking "activated Vit D" tablets only for this. Apparently it is desirable for CKD patients to have elevated PTH and they only start treating it with Sensipar when it's four times the normal maximum amount. How much above normal are you? What has caused your CKD? What other medications do you take?
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Apparently it is desirable for CKD patients to have elevated PTH and they only start treating it with Sensipar when it's four times the normal maximum amount. How much above normal are you? What has caused your CKD? What other medications do you take?
I have no information to offer on the medical risks/benefits of Sensipar at various PTH levels.
BUT.... It is worth noting that Sensipar is a somewhat pricey drug (abouit $20 - $25 per 30mg pill), which puts some pressure on MDs to avoid prescribing this drug whcih may "move the line" at which is is prescribed.
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I don't know that it's "desirable" to have a high PTH level, but I don't think it's uncommon with kidney patients. A high calcium level can be dangerous if it reaches an extreme level. I learned the hard way when post-transplant my calcium level continued to rise (not normal for post-transplant). I ended up with hypercalcemia symptoms. It's miserable. I was struck with it in February and still have a way to go before I think I'll feel fully recovered.
Here's my drama in case you find something in here to help you. It went on for months and it might not be over yet. My calcium level is rising again, three of my parathyroids were removed, insurance is refusing to cover part of the costs, and I need to go get my PTH level checked again this week. I have one parathyroid left and it might need to be removed, too:
http://ihatedialysis.com/forum/index.php?topic=31927.0
http://ihatedialysis.com/forum/index.php?topic=32258.25
http://ihatedialysis.com/forum/index.php?topic=32292.0
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Yes, I also thought it sounded weird to hear that in CKD, a higher than normal level of PTH - as long as it's not too high - is actually more desirable. A renal dietitian first mentioned this to me a few months ago and when I queried this with one of my Nephs, he also confirmed that this was a fact but didn't explain exactly why. It is an unanswered question right now for me & I don't know quite what to believe, quite frankly.
I found this article rather educational on the whole subject of renal bone issues. It has made me also feel very angry because it seems that we get hardly receive enough education in this area. The only reason why I'm on 'activated D3" is because I insisted on this med to lower my PTH levels. If I had remained silent, my Neph would have followed normal guidelines & given me Calcitriol only when I was a lot higher in my PTH levels.
http://www.australianprescriber.com/magazine/33/2/34/7/
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I'm afraid of making waves that will reverberate if I change nephs. I'm afraid, since he heads the huge renal care clinic, that I won't be able to find a neph outside this clinic that takes the low-income insurance I have. I'm afraid that getting a second opinion would indicate to him my dissatisfaction with his care, and that I'd be treated less well. I'm feeling that the treatment circles can be a bit cliquey, but hopefully I'm wrong about that.
A few thoughts.
First are your ready to move centers? If not how many doctors do you have too choose from at your clinic? If you move to a different shift will you get a different doctor? If you move centers (and can) would that mean a new set of doctors?
In my center there are two doctors (from different practices) that come through, on different shifts there are different people from my Dr. practice, including the Dr. who met with me for seven years pre dialysis. I've eyed moving to a center closer to work and know that if I was to move there are no doctors from my current Dr.'s practice so I would need to find a completely new group of Nephrologists.
Second how do you feel about just being upfront with him? A lot of time honesty is good policy, can ask him if he has another Dr in his group that he recommends. You are interested in changing because you want someone who can spend more time with you and explain things better (or any other non confrontational explanation.)
Another option is to just seek out the other Nephrologists for a second option based on your PTH issue and use that as your excuse to move on.
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Yes, I also thought it sounded weird to hear that in CKD, a higher than normal level of PTH - as long as it's not too high - is actually more desirable. A renal dietitian first mentioned this to me a few months ago and when I queried this with one of my Nephs, he also confirmed that this was a fact but didn't explain exactly why. It is an unanswered question right now for me & I don't know quite what to believe, quite frankly.
From the KDOQI Guidelines from the National Kidney Foundation (U.S.):
GUIDELINE 13C. ADYNAMIC BONE DISEASE
13C.1 Adynamic bone disease in stage 5 CKD (as determined either by bone biopsy or intact PTH <100 pg/ml [11.0 pmol/L]) should be treated by allowing plasma levels of intact PTH to rise in order to increase bone turnover. (OPINION)
13C.1a This can be accomplished by decreasing doses of calcium-based phosphate binders and vitamin D or eliminating such therapy. (OPINION)
http://www2.kidney.org/professionals/KDOQI/guidelines_bone/Guide13C.htm
Vitamin D therapy (supplementation) in early chronic kidney disease-- From Kidney Health Australia:
http://www.cari.org.au/CKD/CKD%20early/Vitamin_D_Therapy_ECKD.pdf
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Yes, I also thought it sounded weird to hear that in CKD, a higher than normal level of PTH - as long as it's not too high - is actually more desirable. A renal dietitian first mentioned this to me a few months ago and when I queried this with one of my Nephs, he also confirmed that this was a fact but didn't explain exactly why. It is an unanswered question right now for me & I don't know quite what to believe, quite frankly.
From the KDOQI Guidelines from the National Kidney Foundation (U.S.):
GUIDELINE 13C. ADYNAMIC BONE DISEASE
13C.1 Adynamic bone disease in stage 5 CKD (as determined either by bone biopsy or intact PTH <100 pg/ml [11.0 pmol/L]) should be treated by allowing plasma levels of intact PTH to rise in order to increase bone turnover. (OPINION)
13C.1a This can be accomplished by decreasing doses of calcium-based phosphate binders and vitamin D or eliminating such therapy. (OPINION)
http://www2.kidney.org/professionals/KDOQI/guidelines_bone/Guide13C.htm
Vitamin D therapy (supplementation) in early chronic kidney disease-- From Kidney Health Australia:
http://www.cari.org.au/CKD/CKD%20early/Vitamin_D_Therapy_ECKD.pdf
Thanks Zach for that. I knew there must be a medically valid reason for what I was told. I will question my Neph further on this.
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getting a second opinion would indicate to him my dissatisfaction
Any MD who is upset with a patient getting a second opinion is not worth seeing.
I sought a second opinion when seeing my former (now retired neph). He had no problems with it, and seemed rather pleased when the second opinion from the "big name" in Boston came back with "I'd give you the exact same treatment you are getting from your local guy. I'd be glad to have you as a patient, but there is really no benefit to making the longer drive to see me."
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First are your ready to move centers? If not how many doctors do you have too choose from at your clinic? If you move to a different shift will you get a different doctor? If you move centers (and can) would that mean a new set of doctors?
In my center there are two doctors (from different practices) that come through, on different shifts there are different people from my Dr. practice, including the Dr. who met with me for seven years pre dialysis. I've eyed moving to a center closer to work and know that if I was to move there are no doctors from my current Dr.'s practice so I would need to find a completely new group of Nephrologists.
Iolare, one of Katherine's earlier messages indicates she's pre-D.
Katherine, you live near me and I love my nephrologist. Yes, she's made a mistake or two, but she's also quick to ask for advice from other nephs and when she's made a mistake, she's also apologized for it. I'm not sure if it's ok to post names here, but if you PM me, I can tell you who I see.