So I’m a stage 3 kidney patient. Recently I was diagnosed with Osteopenia and very high parathyroid hormone levels. Does anyone has high PTH with normal calcium levels in the blood? I’m having the worst symptoms with muscles, joints, heart and no appetite. They usually say PTH rises calcium in the blood but mine is just normal.
Hyperparathyroidism and kidney disease - Kidney Disease
Hyperparathyroidism and kidney disease
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Serlo92
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PTH is correlated also to Phosphorous. Is that also up? My PTH is high, last lab it was normal and the lab before it was high, and before that normal..... so weird. But may calcium is fine on all the labs. My phosphorous is normal but on the high end. So my doctor recommended adding some calcium, even though it looks normal... when I eat something high is phosphorous, like my oatmeal. I do not drink cow's milk or yogurt so I started mixing my oatmeal with almond milk fortified with calcium. She also suggested taking a tums with it, but it blocked me up too much. We will see if helps but I do not do labs for a while. She feels it will help to normalize the PTH.
Thanks for your response. My phosphorus is actually is on the low end and my calcium is like 9. When I take the pth medicine I get seizures and brain fog because the doctor said it lowers the calcium. But he said I can’t take calcium supplements or any food that is rich in calcium I don’t know what to do!
Why can't you take calcium? If it is so low, I would think that would be a no-brainer. Also, has anyone checked for parathyroid tumors?
To be honest it’s not that low but my phosphorus is a bit low I don’t know if that’s what’s causing all that. Yes I did a nuclear medicine and it didn’t show any tumors. But I’m gonna let the doctor order a new one.
Why no calcium or adding calcium to your diet?
I do eat calcium in my diet but I feel it’s not enough. Do you ever feel weird whenever you take any supplement? Like does it give you unpleasant symptoms?
I only took a tums once with my meal as recommended and it bound me up so I have stopped. It is always better to use real food. Trick for me is to add natural calcium in food with no dairy. Hence the almond milk with calcium added. Another to look at is your VIT D. If you phosphorous is fine, VIT D may be low and that would make you feel really cruddy tired and achy. renalteam.org/en/renalteam-....
My Vitamin D is a bit low, it’s 24. Whenever I take any supplement my body get achy it’s an unexplainable weird unpleasant feeling. But I think I’ll go with almond milk or as you said food that is rich in calcium 👍🏻
My kidney doctor has been titrating calcium and vitamin D in my meds for about a year and now my PTH is normal after being extremely high for almost a year. I wish I understood more about this combination, but I know there are categories of primary as well as secondary PTH depending on the degree of vitamin D and calcium in your blood. My first kidney doctor ignored (!) It while the current kidney doctor got right on it and adjusted the levels after several months. I hope you can get the help you need to get it adjusted. I felt so much better when when my was.
Maybe just try getting more sunlight for your D/calcium issue. Sunlight is the best. I would not take D either in pill form.
From what I have read, I would stay away from calcium supplements---at least at this stage.
It’s weird that I’ve been suffering for a year not knowing the reason although I didn’t skip a specialist just to figure out what’s happening with me! When I used to take calcium supplement before it used to relax my body big time but now it’s giving me palpitations and other unpleasant symptoms.
Damn, that sounds terrible. What is your diet like?
My diet is close to vegetarian diet. I cut down meat and chicken, Even cheese and eggs I don’t eat them much. I eat plant based protein mostly, it’s hard but as long as my kidney’s are good I think I’m good.
I had high calcium - kidney stones as well. I researched PTH and ended up requesting a scan. Surgery next to remove an adenoma of my parathyroid gland of which there are 4. They text your level while you are still in surgery. My level was very high and dropped almost in half. That fast !
Mine was very high too and my nephrologist only prescribed me parathyroid medication which caused my calcium to always drop so I searched and searched until I found out a way to lower it and it was calcitriol (active vitamin D). My nephrologist was shocked that my pth level dropped hust by taking calcitriol. Although he should’ve known that low levels of vitamin D can be a cause of high pth.
Hi Serlo92, I have stage 3b, I'm 45. My PTH is a bit high, but my calcium is normal. My phorsphorus is a little low. I have a doctors appointment next week, but so far my doctor has not mentioned taking anything for it. What is the medication used for high PTH? I'm sorry your having all these symptoms, does your doctor have any ideas to help you?
Hey Sarah thanks for your response. Please let me know if the doctor mentions anything about it, because it’s giving me hard time!
My PTH was high as well and my Nephrologist put me on Calcitriol 0.25 mcg. We started it on Monday and Friday, moved to Monday, Wednesday and Friday and currently I'm taking it Monday through Friday. It has helped tremendously. My PTH level has dropped significantly. No side effects from the pill. I also take Vitamin D. I worked in healthcare and most of the world is Vit. D Deficient. Very important for me. My level is mid 50's. Calcium is normal. Phosphorus is normal. Hope this helps.
Thank you so much for this info. My calcium is normal but my vitamin D is on the low level. But the thing is when I take a tablet something weird happens to my body that I can’t even explain. I have symptoms of low calcium but my calcium is normal which is making me crazy 😅.
Yes I"ll let you know what he says 
Hello Sarah, I’m wondering what happened with your doctor’s appointment? Is there anything you could advise me with? 🙏🏻
I was transplanted 8 years ago and I have secondary hyper parathyroid. I had the nuclear scan and do have at least one tumor.
My calcium has been consistently high for the past few years.
My endocrinologist sent me for the test and then to an ENT who specializes in the parathyroid.
I have surgery scheduled to remove the tumor(s) next month.
This interests me much, because my parathyroid hormone levels are high, so my nephrologist has taken me off Vitamins C & D. My next appointment is not until mid-July. I am concerned because there is no regular follow-up, so I am seeing an endocrinologist in May because of my concern.
How high are your PTH levels?
On my 1st Basic Metabolic Panel (Jan. 17), my Calcium was 11.6 (Ref. Range 8.4-1-.2) On the 2nd, my Calcium was 9.8, my Vitamin D was 79.9 (Ref. Range 30.0-100.0)
my Parathyroid Hormone was 130.3 (Ref. Range 8.0- 77.0)
Diagnoses: Hypercalcemia
CKD stage 3B (39)
Systemic Lupus Erythematosus
Prerenal Azotemia (Mild)
Next test, ordered for July:
Vit. D, Magnesium Level, PYH Intact, Basic
Metabolic Panel, Albumin, Phosphorus.
I told my Primary that I am concerned about not taking Calcium and Vit. for so long without rechecking levels and she prescribed seeing Endochrinologist.
Am also now having trouble with Blood Pressure being higher and not sure if this is related.
Thank you!
I hope you’ll figure it out. My calcium is just normal nothing out of whack. Although the symptoms show it’s a calcium deficiency.
I believe that PTH has to do with the imbalance of calcium and vitamin D. I'm really surprised that so many doctors from these posts did nothing to correct the imbalance.???? How to correct it has to do with whether its primary or secondary HPT. As I said before, both my primary and first nephrologist did nothing. But, as soon as I switched to my currect nephrologist, he began titrating calcitriol and vitamin D according to my imbalance and it went to normal within several months. My PTH was very high and getting higher at each new lab report.
Hope you all can get some help.
Thanks for this info! I’m gonna see my nephrologist this Monday and see what he’s gonna say. Hopefully he does something!
PTH is a hormone that if it is high you need to be on Calcitriol. My calcium and phosphorous were right where they should be.
Thanks. I know. My PTH has been in normal range for almost a year now. The same with calcium and all the other labs. I'm taking calcitriol now MF and will see what happens with next lab. Current labs are all good. Thanks again
Did you feel achy after taking calcitriol alone? I don’t know why I feel achy and tired even my muscles ache.
No, I do not feel achy when taking calcitriol. However, I found the following online that may explain yours:
"The most common symptoms of hyperparathyroidism are chronic fatigue, body aches, difficulty sleeping, bone pain, memory loss, poor concentration, depression, and headaches."
Really hope you can get yours balanced. Best to all...
Thank you so much. Yes I have all these symptoms! Weird thing that today I met a nephrologist which I saw for the first time, he was like your pth is not that high! Lol I was shocked because I can see it’s very high. Hope everyone finds a solution for their health conditions 🙏🏻
Any chance you find another doctor or more importantly can you get a second opinion from someone?
To be honest this is my 100th nephrologist that I’m seeing. My kidney condition is very rare that’s why I’m finding it hard to find a solution.
Hey Drmind I wanted to ask you how did you take the calcitriol and vitamin d together? Calcitriol is vitamin D but in the active form.
Serio92..I just spent a few hours trying to find my lab report that showed a very high PTH and I can't locate it. I did find one that showed a PTH of 133 with my first nephrologist and as I recall, he did nothing about it. However, he did refer me for a sonogram of my parathyroids [???] making me think I may require surgery. Incidentally, they are very difficult to see and the sonogram was useless. {Sorry to say, so was he]
In any event, I started with a new nephrologist and a few months into my treatment with him, I began calcitriol cap 0.25 mcg on 12/01/2021. I also was told to take daily Vitamin D3 50 mcg daily. This is how the treatment went.
For several weeks: Vit D daily plus Calcitriol only MTWTF, then after
Several weeks: Vit D daily plus Calcitriol only MWTF then after
Several weeks: Vit D daily plus Calcitriol only MWF then after
Several weeks: Vit D daily plus Calcitriol only MF - this is my current dosage.
My PTH on last lab in March was:PTH: 58; Vitamin D: 30; Calcium 9.7 Since 2014 the PTH fluctuated and was over the normal a few times and very high two times.
I hope some of this help. I had been diagnosed as having Primary HyperParathyroid. I will be seeing my nephrologist on May 11th and will definitely asked him about this and hope I remember to share any information with you. Aside from being very knowledgeable, he is very involved and helpful and supportive. I feel very lucky to have found him.
Best to you always. I know you are concerned and I hope sincerely that you find the answers/solutions to your condition.
Thanks for all the info and yes it helped a lot! But the weird thing is that I’ve read a lot about when taking calcitriol you shouldn’t be taking vitamin d with it. Calcitriol is active vitamin d. Even the paper that comes with Calcitriol says you should eat less calcium rich foods. It’s a bit confusing to me 😣 and please update me how everything goes 🙏🏻 Wish you a great health
I think one has to be careful because you can become vitamin D toxic. Several on this forum reported becoming toxic and it taking quite awhile to overcome i
I suspect I'll be off one or the other when I see him in a few weeks. To make it all the more confusing over the years my calcium has always been on the low side, but vitamin D was mostly normal. ?? Enjoy the week.
Thank you. I hope the surgery does take care of it. Hopefully I won’t have more than one that is causing the issue.
Of course I hope the tumor isn’t cancer!!
Hopefully not 🙏🏻
For those of you saying your PTH is high, what is your actual result? My last result was 196.
Mine is 335 which needs medication
KidneyCoachNKF Ambassador
What are your pth and phosphorus levels?
My pth is 335 🥴 and phosphorus is on the low end
Phosphorus and calcium must be right in target or you may have hyperparathyroidism. Low vitamin D is also important to keep you from being diagnosed with secondary hyperparathyroidism if you don't get enough sunshine. My PTH was running at a very high rate even though my calcium and phosphorous was perfect. My doctor prescribed Calcitriol.25mcg once a day and it brought the PHT back to good numbers. You might want to ask about this. I also have 3B,CKD but it goes up and down frequently but I don't let it stress me! God bless you in you're battle
Thank you so much. Yes my primary doctor prescribed me calcitrol. Did you take any medication for the pth? I have secondary Hyperparathyroidism and my nephrologist prescribed Cinacalcet for my pth levels. Did you take calcium along with the vitamin d or not?
Calcitriol is for when your PTH is high. It will bring your numbers down. I also have been diagnosed with secondary Hyperparathyroidism. I don't take calcium, just D3 and that brought my calcium right where is should be at 10. My phosphorous has always been stable. I'm not familiar with Cinacalcet so I'll look onto it!
I have stage 3b and osteoporosis and take Prolia injections. I take calcium 500 and Vit D 400 three per day. When my calcium/vit D is at the high end, my PTH is normal, but if it goes down, the PTH soars! Don’t know if this helps-
Thank you for your response! My nephrologist told me I can’t take calcium coz it’s not good for my kidneys. So I don’t know who to listen to, my body or the doctor.
My nephrologist prescribed calcitriol which is calcium and by using that plus vitamin D, my PHT level was normalized. Are you sure your nephrologist said calcium is harmful to the kidneys and wont prescribe it????? My kidney doctor did watch my calcium level and kept lowering the dose of calcitriol. I started out taking it MWTF, then switched to MWF, and now I take it only MF. This dosage was titrated over a period of almost a year. Hope this info helps.
Yes that’s what my doctor told me! Isn’t calcitriol active vitamin D? My kidney’s make stones out of calcium oxilate I think that’s why I’m avoiding it but every time I take calcium I feel a little bit better.
Wow. I see why you're avoiding calcium now. Thanks for the clarification. All of this can get so complicated and then there's our diets where we have to avoid this and up this. We all need to go back.to school and take chemistry classes, me especially! I'm so glad I found my current nephrologist who seems to know what's going on. Please keep us posted on your situation. I know I'm interested in the results and I'm sure others are, too. Enjoy the rest of the weekend.
Yeah that’s what I said to myself too we should go back to chemistry! The kidneys are so complicated. I will keep you posted. I really would love to share my experiences with everyone for the sake of helping them.
I had high PTH ( around 400)...and my Calcium was low...(around 8)....(Kidney Disease destroys Parathyroids.)..I had 3 parathyroid tumors removed and for the past 6 years my PTH is around 45 and my Calcium is a perfect 9.5...all the symptoms of Parathyroid Disease are gone...Taking Vit D and Calcium just exaggerates the problem....The only way to get rid of Parathyroid Disease is to remove the tumorous Parathyroids...
Thanks for your response. Wow what you’re going through explains a lot. Last time I did a nuclear medicine it didn’t show anything but I’m gonna do an imaging soon and figure it out. What you said tells me why I used to get more tired when I take vitamin d and calcium.
I am stage 5-creatinine 4.29 and normal calcium; last lab was high normal phosphorus. I have hyperparathyroidism with a pth of 400. Hyperparathyroidism is common as kidney disease advances. (Typically if Hyperparathyroidism is due to parathyroid tumors your calcium will be high as well.) vitamin D or vitamin D analog can help with this greatly if due to kidney disease however because I have sarcoidosis I cannot take vitamin D as it will spike my calcium and cause me to have hypercalcemia. I’m really caught between a rock and a hard place. I also get really achy when I take a vitamin d supplements. What are your symptoms with the higher PTH?
I hope you have seen an endocrinology specialist. I, too, have stage 3 (B) CKD. I have hyperparathyroidism as well, but fairly well controlled now. That was not always the case. I had surgery in 2014 to remove one of the four parathyroid glands. I take calcium with vitamin D daily and I continue to see the endocrinologist yearly. Good luck with your case.
Thanks for your response. I did see an endocrinologist and he said you don’t need me because your issue is with your kidney’s not a parathyroid primary issue. 
I was diagnosed with hyperparathyroidism about 10 years ago. My Dr. felt bad he didn't catch it sooner because my calcium has always been normal. My Rheumatologist checked for it. Then I was sent to an Endocrinologist after going on Vit. D and the PTH not coming down.
The Endocrinologist said there is a new strain of hyperparathyroidism, most likely environmentally caused, where the PTH is high and calcium is normal. My calcium remains just under high and my PTH is high but not as bad as before.
Ask for an Endocrinologist referral if you are concerned or need it checked. They can do a scan of your parathyroid to check for benign tumors. Rarely are tumors cancerous.
This was all years before I had CKD.
Best of luck.
Thank you so much for the info! I am going to ask my nephrologist for a scan to see if there’s any change. But my endocrinologist said this is secondary PTH and said you don’t need me you need to check with your kidney doctor. Kidney’s are complicated!
Google the website of Norman Parathroid Clinic...they are located in Tampa Florida...These Doctors are experts ...I traveled there and it was the best experience...felt better instantly..on the website there is a section just for Parathyroid Disease and Kidney Disease...lots of good info
Wow thank you so so much! 👍
Maybe I wasn't clear. I was not talking about a kidney scan. I meant to get a parathyroid scan if you haven't had one.
As I said. My PTH disease and kidney disease have NOTHING to do with each other as one started 20 years before the other.
Check with your endocrinologist.
Yes I know you meant a scan for parathyroid :). Interesting my condition is linked to kidney disease
Secondary means usually from Vit. D deficiency. Primary means congenital, inherited at birth. Most have secondary.
Yes I think I have the secondary PTH that was diagnosed last year. I hope this will lower my PTH without having to take the medication because its side effects are really bad for me.
My PTH is high and I also had osteopaenia which has now turned into osteoporosis. My calcium level is normal but on the high end. My nephro said that I no longer had to take calcium supplements but instead prescribed Calcitriol. My primary care doctor apparently didn't agree with him (lol) and said that I still needed to take some supplemental calcium. I found a calcium supplement that did not have Vitamin D in it - which is very hard to find - because supposedly the Vitamin D from the supplement interferes with the Calcitriol. She wanted half of my calcium to come from food and half to come from supplements. My endocrinologist in the meantime put me on Boniva for the osteoporosis which also has an effect on calcium. I will be curious to see if my PTH is going down and my calcium going up - next test is in April.
Wow thanks for the info! I didn’t know that vitamin d3 interferes with cacitriol. Can you please tell me where did you find that calcium? I’ve been looking for one too without vitamin d3.
Hi Serlo Here is the link about Calcitriol and interactions from WebMD.
webmd.com/drugs/2/drug-7448....
I should have said interacts (not interferes).
This article also says that a person shouldn't take Calcium supplements with Calcitriol unless a doctor tells you to. My nephro said extra calcium wasn't necessary and my PCP say I needed to take it. I am more afraid of my PCP than my nephro so I am following her instructions.
The calcium (citrate) I found was on Amazon but I don't like the way it smells so I am not going to recommend it. Next time I will look for a different brand.
The best thing would be to ask your doctor about whether you should take any supplements with the Calcitriol but you might find that they have different opinions.
Thank you so much PecanSandue, this is helpful 🙏🏻 I actually ordered calcium from Amazon the minute I read your post because I’ve been taking calcium with vitamin d3 along with the calcitriol 😵💫 I’m thankful fir this community.
Just make sure your doctor knows everything you take. They always make the final call.
Of course 👍🏻🙏🏻
My PTH is high with normal calcium. My Potassium and Vitamin D are chronically low bordering on critical at times with Potassium. I was told by my Rheumatologist that it is due to my renal artery has calcifications and is not permitting the absorption of needed minerals which all go hand in hand. They put me on Lactaid and a calcium supplement, plus 500 mg of Pottasium once a week or more often if needed and 50,000 units of Vit D - Alpha Hydroxy now once a month. I have a Horseshoe Kidney with fusion across the midline and a single renal artery. Your calcium may not be low now but it will be according to my Endocrinologist due to the above problem with my renal artery I am pulling calcium and minerals from my bones instead of my diet which leads to Osteoporosis.
Thank you for your response. That’s exactly what’s going on with, because of the renal impairment I’m losing a lot of calcium from my bones because my kidney’s can’t form the active D on it’s own. It’s a complicated organ which regulates everything in our bodies. What stage are you of kidney disease?
Stage III teetering back and forth towards Stage IIII. Once I go on Dyalisis it's the end of the road. They cannot transplant a kidney to someone with a horseshoe kidney but can transplant the horseshoe kidney to those with normal anatomical kidney structures.
ABNORMAL﴿ PARATHYROID HORMONE ‐ Final result ﴾07/21/2021 3:09 PM CDT﴿Component
Current value blood 349.6
Ref Value Range
10-65 pg/ml
Vitamin D is 19
Reference range
30-100 ng/ml
I do not have osteopenia that I know of but have had 18 orthopedic surgeries since 1998. Latest were bilateral TKA 2004/2014, bilateral hip replacements 2008/2009, bilateral ankle arthrodesis (fusions) 2012/2013. Also AVN of both humeral heads, spinal stenosis stage 4 L4-S1 and C1-C6. Neurologist believes there is some validity to the hypothesis that my poly-osteoarthritis is so severe due to the 26 years of stage 4 CKD but he also believes that the testing for that is irrelevant. Just my experience.
My prayers to you 🙏🏻 Kidney’s have a lot to do with our bodies. It just regulates everything.
Thanks for the prayers! As a believer, I appreciate all offers of prayers for my health. I know the power they have and I have been the benefactor of that power as I have been granted an additional 26 years I medically shouldn’t have been around to live. That’s 26 years and counting. So a sincere and heartfelt thank you for the kinds words!
Some clarification on a couple of points I scanned from others above. As you can see, my PTH is nearly 400 and I have high calcium as well. Thus, my thyroid issue is not the result of a primary underlying thyroid condition but from 26 years of stage IV CKD. My eGFR ranges from 13-24, creatinine (although in stable CKD creatinine is no longer used as an accurate measure of kidney function that remains nor kidney function lost. However, in AKI or stage V CKD is can be extremely helpful to determine when to start dialysis) runs 2.6-3.5 and as high as nearly 8 due to several issues over a 26 year period. Thus, CKD and thyroid issues can be linked significantly. Also, the stage V idiopathic peripheral neuropathy I have developed over the last year is most likely related to the length of time I have spent with less than 20% kidney function. My poly-osteoarthritis that has plagued me since 1998 and led to bilateral knee TKA, bilateral hip replacement and bilateral ankle arthrodesis from 2004-2014 was most likely worsened due to the CKD.
Stage IV CKD male patients over 50 with a history of HBP and hyperlipidemia are, according to the NKF KIDGO guidelines, face an 80% increased risk of a significant CVD incident in the next 5 years as opposed to the same age and comorbid conditions peers without CKD. Thus, your observations that, “kidneys have a lot to do with our bodies and the regulate everything,” are a spot on assessment. For most of us CKD will be the worst, most life-altering and most life threatening diagnosis we ever face. Yet the majority of primary care doctors never alert their patients until the are stage 3b or below. Many never test their “at-risk” patients who are the T2D and HBP population of those doctors patient rosters. Then, they compound the problem by not referring those they do identify with CKD to a nephrologist until it is too late for the specialist to do much except plan for the dialysis/transplant phase we will all face if we live long enough with this disease. If the primary care doctors are proactive and do get a nephrologist consult when a stage 2 or 3a patient is properly diagnosed many nephrologist rely on information they learned in med school 10/15/20 years ago or anecdotal theories they have developed in a “groupthink” environment of what the alpha doctor of the group has had success with. Further the “treatment” of CKD for many years has been passive with diet modification, controlling the underlying cause and then planning for dialysis/transplant. The dialysis treatment many CKD patients receive is 50 plus year old technology, inconvenient, lifestyle destroying, and now with the COVID virus becoming endemic and being an issue for all the world to deal with for the foreseeable future, dialysis in a group setting is life threatening because of risk of a COVID outbreak within the group. The first 6 months of dialysis, as many studies articulate, add an additional 75 plus percentage of a significant CVD incident within those first 6 months.
However, around the world health care advocates have been shining new light on the cost of human life and suffering CKD presents. It’s not new information that CKD is quickly becoming more of an issue than several of the other major degenerative diseases, it is just a new realization of health care providers especially in the western world that CKD needs to be addressed like heart disease, cancer, T2D, and others. For the first time in 25 years the US FDA approved a new pharmacological treatment for CKD. The SGLT2 class of drugs show tremendous efficacy in stopping the progression of CKD. Also, the NKF and ASN in the US updated all the KIDGO guidelines for physicians in 2020 and 2021, many had not had a significant update since 2000. In order to put some juice behind the new guidelines, the US government and private corporations in all industries pledged and donated more money for commission large new studies for things such as proper nutrition and benefits of exercise as well as the science of the CKD disease processes. The eGFR guidelines cut the calculations used to figure and report eGFR from over 20 different calculations to just 5. They finally developed the creatinine standardization program and have removed creatinine as an indicator of kidney damage/function in stable CKD patients and added the much better UACR test. UCAR is a measure of kidney damage that we have suffered and eGFR is a measure of remaining kidney function we have left. Theses two test while being better still have limitations as both can be up to + or - 40% in accuracy and that is why eGFR in my case can be 13 in late 2020 and 24 in July 2021. That is a difference of 11 points (in this case an increase) which doesn’t sound like much, but is an estimated 83% increase in eGFR. Did my remaining kidney function increase 83%, unfortunately no. Further, the US government have added by law that the Medicare/Medicaid insurance providers pay for a consult with a renal dietitian if referred by a primary care or nephrologist. It is not a sufficient amount of visits yearly but is a step in the right direction, an acknowledgment by law makers and health professionals alike that those services are needed and important to help retard the progression of CKD and something that was done by policy makers while in the midst of the initial COVID pandemic and US lockdown. It was a service unavailable to Medicare/Medicaid patients in 2019 unless paid for out-of-pocket, now it is a covered treatment. Groups like AAKP, AKF, NKF and the ASN are now lobbying hard to increase visits, monitoring and knowledge of these benefits in the US capital as we speak (or type). More money has been raised, donated by private corporations from all industries and allotted in the US yearly budget from 2016-2021 than the 20 years previous for the advancement of new treatments of all kinds as opposed to the two options of dialysis and/or transplant we have currently to effectively “cure” our disease.
In 2017 the ASN and others developed KidneyX which is
the Kidney Innovation Accelerator (KidneyX) is a public-private partnership between the US Department of Health and Human Services and the American Society of Nephrology to accelerate innovation in the prevention, diagnosis, and treatment of kidney diseases. KidneyX seeks to improve the lives of the 850 million people worldwide currently affected by kidney diseases by accelerating the development of drugs, devices, biologics and other therapies across the spectrum of kidney care including prevention, diagnostics and treatments. This is the group that ran the successful test of using a pig kidney in replacing a human kidney in a human clinically dead by physically maintained via machine. The hope is using technology like 3D printer scaffolding, the patients individual stem cells and portions of a pig kidney more kidneys can be “generated” as viable transplant options versus waiting for a donated human kidney. This was probably imagined by forward thinking medical practitioners when pig values were commonplace to replace a human heart valve in the late 1970s. However, due to the complex nature of the kidney function in humans and the rejection issues causing the need for immunosuppressive therapy that led to many unsuccessful transplant outcomes, not something that could be tested. Now in a 5 year span more and more breakthroughs are being developed and tested than in the 25 years prior for us! We live in exciting times!
Therefore, the constant worry and seeking ways to try to raise eGFR from 3b levels to stage 2 levels, whether using creatinine or UACR is better, whether the new eGFR calculations will raise or lower the previous level we had 3 months ago and most of all the worry of dying after being diagnosed at stage 3a while important on some level, these are not the MOST important issues. Instead, everyday should be devoted to the thought, at least for part of the day, of “WHAT AM I DOING TO PRESERVE THE KIDNEY FUNCTION I HAVE LEFT!” I worry about all the other noise, I stress over quarterly blood tests and my levels, I worry or at least think about death too much. I wonder why my HBP diagnosed at 18 and my hyperlipidemia diagnosed at 20 were never articulated to me by my military doctors from 1985-1993 nor my civilian doctor from ‘93-02/16/1996. I wonder what I would have done differently to control those two major risk factors for CKD if I had been properly informed. But, I don’t get the chance as the first diagnosis of CKD was 02/16/1996 after a heat stroke and 9 days later suffered AKI and spent 6 plus months in ICU and 4 of those on a vent with sepsis, jaundice, multi-system failure and two cardio inversions to restart my failing heart. All of that sucks, isn’t fair and caused an obsession with lab work blood levels and all I articulated above. But, but bottom line always domes back to of I can persevere what little kidney function I have left I die at age 75 from “natural” causes. Which is about the “average” lifespan for a US male. So do what we all know to do and is discussed ad nauseam (I mean no disrespect I simply like to use ad nauseam in a sentence…lol) on this site. So be extremely careful about what enters through the mouth, move some and raise your heart rate daily, do some resistance training to ensure if you do get sick and just be in a bed for a week you have the ability to get out of the bed. Do what rewards you and others in your career instead of spending unhappy days that turn into years chasing more dollars because you want to be sorta-kinda wealthy. Love unconditionally those who love and support you, seek professional help with the mental health issues that I and many others suffer due to the anxiety and depression of the initial diagnosis and the additional challenges we as chronic disease sufferers face vis-a-vis those without CKD. Take the trip/vacation you have a dreamt about constantly and live every day as if it was a gift because it is a wonderful gift. Don’t let an eGFR surprise ruin a perfectly wonderful journey of life we are all so lucky to be able to experience! My best to all!
Wow you got some good background 👍🏻 Never knew the GFR is not a turning point of our kidney health!
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