One year ago I had a GFR of 60+ . I had a bad fall that tore a foot tendon in half and is inoperable so I was using heavy doses of ibuprofen for pain. after a few months of this my GFR started deteriorating and is now 25 . yesterday a lab result showed Parathyroid Hormone Intact Molecule 125 pg which is quite high. I have had more bone and joint pain and take only Tramadol at bedtime for pain and occasionally Tylenol and try to stay off of my feet. Has anyone had elevated Parathyroid symptoms such as more bone and joint, muscle pain? I can not take NSAIDs at all now as the kidney doc thinks that they have been damaging to my kidneys. any thoughts?
Diana in NorthCoast California
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mendobear53
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I have high pth do to kidney disease and Psoriatic Arthritis. I am on a biologic for the PsA and it helps but for the bone pain I only take Tylenol. I too destroyed my kidneys by taking ibuprofen but mine was prescribed. Doctors who still recommend long time use of ibuprofen or any NSAID should be remove as a practicing doctor.
I too was taking prescribed NSAID for over a year, daily. I was diagnosed CKD 3b by a new Doctor who said likely the NSAID contributed and not to take it.
I am 75 and CKD stage 3a. I am pretty sure my CKD was caused by overuse of Aspirin. I had a high stress job and frequently had headaches. I thought aspirin was safer than other NSAIDs. NSAIDS are definitely damaging to kidneys.
My PTH was 72 a few month’s ago but on a follow up test it is down to 47. I also have osteoporosis which was diagnosed after a bike accident in Sept 2023 in which I broke both bones in my left forearm and fractured the tibia in my left leg. I used Tylenol for pain control while my bones were healing - but I try not to use any oral pain medications now- alternating ice packs and cold packs help a lot with muscle and tendon pain after an accident.
As you have high PTH and the list of symptoms you describe, have you been assessed for hyperparathyroidism? Bone, muscle, tendon and kidney problems are all associated with this. I would ask about this as if you do have this condition it will only get worse unless it is addressed.
I had stage 4 kidney disease due to medicine that I am on due to having a heart transplant. I have improved my GFR thanks to a plant based diet, lots of water, and a healthy lifestyle that includes exercise. It sounds like the ibuprofen has impacted your kidneys terribly. I would try to ween myself off those and work on a healthy lifestyle at the same time as I did. I am certain you will see great results!!
There is a connection between parathyroid, kidneys, calcium, vitamin D, and bones. Kidneys not functioning well will make your PTH go up. Have you had your Vitamin D and calcium levels checked? My PTH was over 200 because of CKD (eGFR 40) but I have been taking a synthetic Vitamin D (calcitriol) and now my PTH level is in the low 100s.
I agree with others about parathyroidism. A few years ago, I had high parathyroid on labs and my primary and an old nephologist did not know what to do with this. A new nephologist put me on Vitamin D and calcitriol which was titratted over a year until the parathyroid labs came back normal. I still take the vitamin D daily. It's important thst you see a doctor who knows how to control this issue. When these lab numbers are off, the body starts taking the calcium it needs from your bones. Sorry to hear about the pain you're in without any adequate meds to help. I can only hope and pray you get some relief soon.
It always surprises me that people who live in sunny states (Florida, California) can still lack Vitamin D. In any case, it might be a good idea for the OP to get a Dexascan to see if there is any osteopoenia problems developing.
I've lived in Florida for over 40 years and was still lacking in vitamin D. What I see now as hilarious is the first nephologist who encountered my high parathyroid sent me for a scan of the parathyroid and no imaging place could do it as they are pea size glands behind the thyroid. Boy, am I got rid of thst nephologist. I'm still amazed that so many doctors don't know how to fix this vitamin D/calcium problem. I really lucked out with that next nephologist, but unfortunately he left the state to do volunteer work. BTW some people have these parathyroid glands removed and there is a hospital n Tampa that specializes in this
I actually looked into that Tampa hospital when I thought I had parathyroid gland problems. My nephro is fine - it's just that he and my primary care doctor don't really communicate and it's real cute when they override each other. I saw your profile about the tooth infection you had and I just want to say that for a long time I have thought that there was a big connection between my teeth and my hypertension. I think there are studies now that confirm that there is a connection.
Wow. I check BP daily for my GP and I don't recall any changes during the last dental infection (1/2024) But, I jumped on it fast and took care of it right away. But, I did have trouble with the amoxciliin that I took afterwards. The dentist asked whst antibiotics can I take given my CKD but I didn't know. Now, I have a list and will ask the nephologist when I see him next month. I "heard" that the Tampa parathyroid hospital takes them out for anyone who walks in the door.
BTW the dental infection I had a few years ago lasted several weeks and involved two different oral surgeries with lots and lots of anesthetics plus antibiotics. Not sure what in this debacle caused the GFR drop which never returned.
Your doctor was not a diet. Of course imaging can be done of the parathyroid glands. It’s called a sestimibi scan. They inject you with a tracer dye, it’s called nuclear medicine. If imaging centers could not do the scan, it’s because that center didn’t have the right machine and access to the tracer. CT scans and MRI scans find tumors even smaller than the parathyroid glands all the time.
Oh, good to know about sestimbi scans. When my nephologist ordered a "scan" he left it up to me to get it. I contacted 3 or 4 imaging centers and only one made an appt to allegedly scan the parathyroid glands. Turns out, this center only scanned the throid glands and the results only confused the nephologist whom i was seeing at the time. I was a newly diagnosed CKD patient and was worried about not getting treatment for the high parathyroid. When I became more proactive and found another nephologist who knew how to treat this condition, i began the journey of educating myself and being much more involved in my treatment. Thinking back now, i recall feeling so alone at the time and anxious. Thank goodness for this community for helping me grow up.
Only had parathyroid problems a short time. As far as my bones are concerned, I've been blessed with very good ones. All previous scans have come out normal+. I come from old peasant stock, I think. Still, thanks for the suggestion.
I take calcitriol AND 2000 ius of Vitamin D a day. That's a lot but it really reduced my PTH level. I had to stop taking the calcium supplement (only 600 mg a day) because my calcium levels got too high. It's definitely a delicate balance.
I have avascular necrosis (bone death) in my knees and ankles from the IV Prednisone that saved my life at 30 when my colon decided to try and kill me. I'm 61 now and still have avoided the double knee replacements the promised I needed at 30. I can't walk or stand for more than 20 minutes without resting. Last year I added facet joint deterioration in my spine and arthritis in my hands. I take Tylenol 3 for the pain. It is by script only in the US and OTC in the UK and Canada. I'm treated like a opioid addict by some Dr. It barely dulls bad pain. I went to special therapy for the back pain, but the effects don't last and I can't access the special machines the use. They aren't at the YMCA. Just in Dr office. I haven't heard of pain from para thyroid. I take an orange pill because that test is high. Empathy. Pain is so hard. It hurts to move, but hurts more if you don't move.
I took NSAIDS most days for over 40 years because of bad headaches. Until my creatinine started to go up in Aug 2020, no one ever told me it was bad for my kidneys. I immediately stopped taking them. Now I only take Tylenol and only if I absolutely can’t stand the pain. I was CKD stage 3A then. I am now CKD stage 5. I’m not sure how much the NSAIDS contributed to my CKD because my nephrologist said it is caused by my high blood pressure. I suspect it’s a combination of the two. On my last set of labs my PTH was 301.3 pg/mL, my calcium was normal and my last vitamin D (1 year ago) was normal. My nephrologist doesn’t seem concerned about it yet. I have not experienced any bone/joint pain or other symptoms from the high PTH, at least that I’m aware of. I had a DEXA scan 3 months ago and everything was normal. Secondary hyperparathyroidism from chronic kidney disease can cause bone and muscle pain. As someone else mentioned, check to see if your calcium and vitamin D levels are low. I would also take to your kidney doc about your concerns over this. Sorry you are experiencing this bone/ muscle pain and I hope you can get some relief real soon.
I took a lot of ibuprofen because somehow I thought it was safer than aspirin and Tylenol when I had lupus pain in my joints, but it damaged my kidneys too. Seems like the manufacturers should put a bigger brighter warning label on it, MAY DAMAGE KIDNEYS. Or something... I'm still not clear on which drugs NSAID applies to. Non-Steroidal-Anti-inflammatory Drug? I've had less problems from the steroids I also took for lupus.
Hello and I'm sorry about your experience. I, too have very elevated PTH for a while now, recently 383, several years due to CKD which is now in Stage 5, so far without requiring dialysis nor Transplant. I've been taking Vitamin D for a few years now without any help. I was just now placed on Calcitriol for the PTH. My kidneys were destroyed by PKD, but I'm sure years of prescribed Ibuprofen for Fibromyalgia didn't help me. Now I am limited to suffering with any pain and taking Tylenol. Any NSAID is bad for kidneys, healthy or not and no physician should be prescribing it so freely. It is now important for you and any CKD patient to avoid all use of NSAIDS to prevent further damage to your kidneys. Hope you find some relief soon.
You are eligible for the transplant list when your GFR drops below 20. Highly recommended you get on that immediately unless you have some health issue that precludes it. Do not wait.
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