Well a surprise new diagnosis yesterday. I was first diagnosed with chronic kidney disease approximately 15 years ago. I work hard to keep my numbers in line by diet. Albumin to creatinine ratio has always been high for me though I For the past three years or so the ACR runs around 2000 (should be less than 30) and this past year the eGFR is squarely in the Stage 4 range. However, my last Nephologist appointment yesterday caught me by surprise. eGFR was 33, back in the Stage 3 range, protein was a little better but parathyroidism intact was well over 200. I have never had an abnormal parathrodism result. The dr. diagnosed me with Secondary Parathyroidism in Renal Insufficiency.
Here's my question. In reading, I learn this diagnosis is common in Stage 5, but it doesn't talk about the diagnosis prior to Stage 5. Is there anyone out there who can shed more light on this diagnosis and what it means as far as prognosis or just provide additional information.
Thank you.
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GoldenBailey
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There is a Clinic located in Tampa Florida that specializes in Parathyroids...they have a very extensive website explaining what Parathyroids are...These Doctors are impressive...
Normanparathyroid.com
All Nepholigists will tell you Kidney Disease causes Parathyroid Disease...but these Specialists see it the other way around...thatParathyroid Disease causes Kidney Failure...They have recommended for decades that when we see a decline in kidney function that the first test that should be done is PTH...especially if you are still in Stage 3....
I went there in late stage 3...As you have probably researched we have 4 Parathyroids....3 of mine had non cancerous tumors...they removed them leaving me with just 1....and it works perfectly...53 to 56 PTH...which is what our PTH levels should be...the strange part was that I had low Calcium, which made it harder to diagnose...because Parathyroidism usually presents itself as high Calcium levels...EXCEPT WHEN IT HAS ALTERED THE KIDNEY FUNCTION...and the first thing the Nephs do is treat it with Vit D...which is the worse thing they can do !!.... That was 7 years ago and sadly I moved on to stage 5 (too much damage had been done) a few years ago and am now on Peritoneal Dialysis...but I don't have the bone and mineral problems that most have...in fact, I have very few symptoms at all......very happy that I made that decision to have them removed..just wish my Neph...who has seen me since I was in Stage 2, would have had me checked then...but he still baulks about Kidney Disease causes Parathyroid Disease...and considers it Secondary
Thanks RhenDutchess, I will check it out I've been diagnosed with chronic kidney disease for over 15 years and this is the first time the Paratyhroid test has been out of range. I do have very extensive bone demineralization and have had for many years I'm on Prolia which seems to have stopped working and I was hoping that was the cause of the test result but the nephrologist said no, it is definitely a result of a kidneys I have already fallen twice and broke a hip each time, have multiple compression fractures and my spine collapsed once which also required a fusion Now, I'm wondering whar this new diagnosis will mean to my future Thanks again. I need to learn as much as I can about this new diagnosis.
I was diagnosed with CKD over 25 years ago....back then they never really showed my Labs results to me...they just tell you few highlights and move on....even tho I had been complaining about my bones aching...I don't even know if they were running a PTH on me....then in my 16th year of CKD they noticed that my PTH was 330 and started Vit D therapy and I only got worse....started checking around and researching Parathyroidism....what an eye opener...
It was a very simple surgery...but definetly one you want done by experts...I traveled half way across America to the Norman Parathyroid Center in Tampa...did tge surgery and immediately began to feel better....and have stayed that way....The Surgeons in Tampa said my Pharathyroidism was Primary and it damaged my kidneys...I believe them
please check your vitamin D level. Sometimes just adding vitamin d3 can help as pth is inversely related to vitamin D. When D goes down pth rises. Your neph can also recommend active D to stabilize numbers in the interim and then you can perhaps maintain with vitamin d3.
I disagree....If you have Parathyroid Disease, Vit D is the worse thing you can do...although it seems to calm things down, it actually exacerbates the problem...If you have Parathyroidism ...which are engorged Parathyroids...tge only cure is removal of them
Thanks SN23. I have had low D3 for at least 15 years and have continuously been on D3. Even on daily D3, it still runs on the low side As I replied above, I've broken both hips, multiple compression fractures, and my spine has collapsed. I've been on Prolia, but according to blood work that seems to have recently stopped working too. Thanks for the input. All information is helpful. Take care.
Thats low...anyone over 40 years old Calcium levels should be 9.5..
When Calcium drops Parathyroids send out Parathyroid Hormones...and it takes the Calcium from your bones to feed your heart....but it leaves the bones dry and brittle
Sorry to hear but do check with your doctor about active vitamin D. My son had a similar problem and was helped by taking active vitamin d ( prescription medicine) and then followed by vitamin d3.
Vitamin d is essential for calcium absorption and low vitamin d and poor calcium absorption as a result leads to hyperactive parathyroid resulting in high PTH numbers.
Please discuss with your nephrologist to get help with getting vitamin D up🙏
There is a lot of good literature on this. Sharing one:
Thanks SN23. The nephologist did mention we may start Active Vitamin D3 on next visit. I will rad up on Active Vitamin D and also check into the Web Site you list.
Also the active vitamin D was given for high PTH and vitamin d3 is for vitamin D deficiency. And you can also get prescription dosage of vitamin d3 if it’s not corrected.
Thanks for the info. The nephologist did mention he may start me on Active Vitamin D on next visit. I'm curious, is your doctor prescribing it for low Vitamin D (without diagnosis of secondary PTH) or do you also have a parathyroidism issue also? When you say it hasn't gone any lower, may I ask what your numbers are? Thanks so much. My Vitamin D has been low for many, many years.
Just a note of caution on the Vitamin D... be careful as it can be toxic if you get too much, in fact you could die from it. Just make sure your doctor checks it once in a while.
I developed high Pth two years ago and my very good nephrologist started me on Vit D3 and began titrating calcitriol at first 7x a week, then 5x a week, then then 3 x, and now 2x. Within months of this treatment, my pth level dropped to normal and has stayed there. I heard about the Tampa clinic where they remove the parathyroids The impression I got from others about the clinic is that everyone who walks in gets their parathyroids removed. Be careful. Get second opinions Work with a nephrologist whom you trust.
If you show up at a the Tampa Clinic it is because you have been accepted as a Candidate...You must send all your current Records and Labs to their Team and they read them and discuss between each other the best course for you and if not, they reject your request..and once (and if) you get there , more tests are ran ...They Specialize in Parathyroids and this is all they do....So yes, everyone who gets accepted by their Clinic has their Parathyroids removed...may 1...maybe 3
I had secondary hyperparathyroidism at stage four. It's common in kidney disease. I took calcitriol and vitamin d and my PTH was controlled with that for a long time until I got to stage five and received a transplant. I never required surgery or anything like that. My mother in law had primary hyperthyroidism (not from kidney disease) and required surgery. They are two different types.
Yes, primary and secondary hyperparathyroidism are different conditions with different treatments. Primary hyperparathyroidism is usually caused by a pituitary problem and requires removal of the affected gland/s. Secondary hyperparathyroidism, which my partner actually has, is generally treated by Vit.D3 and calcium supplementation, as both these are low. I hope you continue to do well.🙂
I’ve been in stage 4 for about 8 months since having a nephrectomy. On my last visit while being stable I had high para thyroid. I never even heard about it. Dr prescribed Calcitrol (pure form of vitamin d) and now back to normal. Apparently kidney is sending message there is not enough vitamin d in your system so parathyroid starts taking calcium from bones to make it up. At least that’s how I understood the explanation.
currently having battles with endocrinologist who denies there is variant of hyperparathyroidism (hPTH), normocalcaemic hPTH which means mid or upper range calcium and raised parathyroid. This is what I’m sure I have. Nephrologist says no issues but maybe mild secondary hPTH. I’ve CKD 3b, eGFR stable at 44. Now seeing surgeon re probable multigland hyperplasia.
I had raused parathyroid four years ago overlooked by three consultants. Not a happy bunny.
Those that are taking Prolia are hopefully fully aware of the rebound phenomenon that occurs when stopping, halting, missing it irrespective of doses. Rebound brings real risk of multiple vertebral fractures and Prolia should be followed by a relay drug, a Bisphosphonate, eg. fosamax.
Problem is is eGFR is lower than 35 you can’t take these drugs. This is supposed to be discussed fully before Dr ever prescribes it as if on Prolia and can’t then take the relay you end in Prolia trap just like so many of us are as eGFR levels low at start and end of Prolia. I’ve had over two years of extra anxiety (rebound fractures have been reported 43 months after last dose) as no relay drug. This is not a drug for anyone with dodgy kidneys sadly.
Thanks for the information. Yes, I'm very concerned about coming off Prolia because I do understand the issues. However, it seems to have totally quit working for me. I have a good endo doctor who studies these types of issues on a regular basis and is up to date on knowledge. For that I'm fortunate. I've had so many compression fractures they can't count them all so not looking forward to what this may involve. And, yes, my eGFR is lower than 35.
Did your Drs not discuss Prolia discontinuation before starting the drug? The manufacturers state this is needed so it can be worked out if would be a suitable relay drug and if not the other treatments should be considered. Sadly my medics all failed to do this and if I’d only done more research I wouldn’t be in this situation now. I gained the facts and support from an excellent Facebook page thankfully.
No, but I was already aware of the discontinuation issues. I've had tried most of the other options with no success so was reaching for straws. I have had so many previous breaks. Like I said in one of my replies, I work with a doctor who is highly involved in researching osteoporosis options. I guess I'm one of three people in his practice who is having trouble with Prolia.
not sure if I can add this article on stopping Prolia but will try.
There is also a great paper from Dr Lamy from Switzerland, who was first to recognise and publish the rebound and it’s rapid loss of density and spontaneous multiple vertebral fractures risk back in 2016, on stopping denosumab (Prolia). Amgen, makers of Prolia also have great info in the ‘Prolia monograph’, easily found on line.
By the time I got my transplant in July 2021, my PTH was 650. It rose dramatically that last year.
As people have noted, the course of treatment is Vitamin D3, followed by an active form of Vitamin D, calcitriol. They tried to get me on Cincalcet, but insurance would not approve it as I was not on dialysis.
After my transplant, they started me on Cincalcet, and my PTH has since dropped to 119.
The doctor cut back on my Cincalcet when I got to 119.
Thanks for the information Magdi. I'll have to check insurance coverage on Cincalcet. I'm on Medicare and Part D drugs buy my out-of-pocket is already several hundred dollars a month. They want me to go on Farxiga but that's like another $750.00. Good luck with your transplant
I've had this since first getting diagnosed with stage 4. I had stage 3-4 CKD for over a year before anyone told me. I take an activated D daily. The script starts with a C.
Your post is so timely for me. I was actually getting ready to post the same thing! I have stage 3 CKD, probably from high blood pressure over the years. Two years ago my eGFR was at 33 and it started improving until it reached 41. Then I started going to a Nephrologist and ever since, my eGFR is going down again and my PTH is going up! When I started with him, he prescribed Calcitriol 3 x a week; when my PTH numbers started rising he said I should take it every day. But it's making my numbers go even higher (my PTH intact is at 224 now). I am having the opposite reaction to what should be happening. My blood calcium and Vit D levels are normal so there's that. And I have osteopenia which is improving with ibandronate (but I wonder if that has anything to do with what's going on!). You really need a doctor would is a genius diagnostician because you are dealing with so many systems and chemicals that interact with each other . I know there is something wrong - I just don't know which doctor can fix it and which one to trust.
Oh PecanSandie (I love your name) I'm so sorry to hear you are struggling with this too. I wasn't sure I'd get any replies when I posted but am surprised at how many in our group are dealing with the same thing. You're right when so many systems are involved and especially when multiple doctors are involved and they have different approaches. I hope they can keep your osteeopenia at the osteopenia level. I believe so much of my back pain is from the osteoporosis and I'm so fearful of even the smallest injury now. I wish the best for you in finding your answers. Keep in touch and let us know how you are doing.
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