After a year of being made to “wait and see” I am finally booked for surgery for hyperparathroidism
I have really deteriorated in that time. I’ve developed osteoporosis, have severe hip pain, serious muscle weakness and worst of all have pretty much lost my sense of humor.
I don’t know any more what symptoms are from Parkinson’s and what are created by the massive calcium levels swirling in my body. Well I guess I know what causes the kidney stones…
But I’m still glad to have fought to discover the truth and hopefully I will be like the vast majority of people who have parathyroid surgery and have a major reduction of their symptoms.
And there appears to be a number of links between PD and parathyroid disease.
Does anyone else have a double dose of PD and PTH? And any suggestions to help my recovery from surgery?
Thanks
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I had hyperparathyroid surgery in 2019. My hip immediately stopped hurting. I should have rested more after surgery initially, but I finally caught on and took it easy. I do not recall any difficulty healing. They removed 3 out of 4 glands. Everything's been fine until June 2023, when I was diagnosed with PD. I wasn't aware that the two are linked.
yes, I get calcium & pth levels checked 1-2 times/year. so far, so good. Yes, it was like I woke up from anesthesia and hip felt normal. Such a weird symptom. Do you belong to the parathyroid group on FB? So you're saying hyperparathyroidism creates PD symptoms but not actually PD?
My dad doesn't have PD but did have hyperparathyroidism. His calcium never went above high-normal, so we really had to push to get surgery cause they weren't sure his symptoms would abate with adenoma removal. Fortunately, they did.
The surgery was uneventful, although he was hypocalcemic afterwards. He still has to take a hefty dose of calcium daily, but that's a lot better than feeling punch-drunk (his description) all the time.
I suspect you'll feel a lot better after the surgery, good luck!
Thanks for sharing your dad’s story. It does sound like the post-surgery outcome is generally positive- apparently it’s the one procedure that can reverse osteoporosis. I get the ‘punch drunk’ feeling too!
Thanks miros92 for your suggestion. It's not an article to read quickly, but the Vitamin D element is very relevant. I'll absorb it more fully tomorrow...
That article is from a site I have used a lot - it led me to cautiously self-diagnose hyperparathyroidism a year ago. Just wish I'd been taken more seriously by the specialist then.
I've learnt my lesson - no one will advocate for my health as actively as me from now on.
Absolutely. I had to be my own doctor until I finally found endocronologist who recognized it immediately. My calcium was something like 10.6 and I was being told "wait and see" and being sent to urologists looking for kidney stones (never got any). My father died from this 20 yrs ago, undiagnosed, with multiple kidney stones(he had pulmonary embolism from infection a stent gave him). When I finally started supplementing with vitamin D post surgery, it was like a light went on in my body and brain.
So sorry to hear about your father - but thank goodness you persisted. I am glad that I have too, but during the endocrinologist's designated 9 month "wait and see" time I have significantly weakened. 4 weeks ago extreme pain took me to Emergency and they found a kidney stone. Just two days before I finally got to see specialist surgeon - who immediately confirmed I need parathyroid surgery.
Then yesterday I learned that the kidney stone is stuck and I now urgently need to have a further 3 surgical procedures (and at least 2 more general anaesthetics) to have it removed.
Apologies for the long-winded explanation, but just a warning to those with this diagnosis who are cautious about the surgery- things can go downhill quickly.
ugh, sorry about the kidney stones and extra procedures, that is stressful, but keep taking the next step. have you had a scan of your parathyroid? Again, a matter of competence. my first scan was at a hospital and it showed nothing. Second scan at 2nd endocrinologist's showed at least 2 adenomas. doctors were amazed I never got any stones, considering my calcium numbers. My father had minimum 14 at a time, would get some out and more would be formed.
Best of luck to you. My sister struggled for years trying to find a reason (she was very active in terms of impact exercise) for her osteoporosis and extreme fatigue and was finally diagnosed with hyperparathyroidism. she finally had the surgery in Tampa and once that was done, her fatigue dissapated and her osteoporosis stabilized. Since I stuggle so much with fatigue, I looked into it and in 2021, I wrote the following:
MY PTH levels ranged from 53-108 (lab range for PTH is 14-64) but calcium was always under 10. Vit D (lab range is 30.0 - 100.0 ng/mL)ranged from 45-75, currently 52). I do take 5000IU Vit D several times/week. I consulted with many of the top surgeons and endocrinologists:
Dr. Babak Larian- Los Angeles, specialist in HPT ( hyperparathyroidism) surgery
Dr. Owen - NYC, Mt. Sinai - specialist in HPT surgery
Dr. Zarnegar - NYC NYP - specialist in HPT surgery
Dr. James Lee - NYC Columbia - specialist in HPT surgery
Dr. Bilezekian - NYC Columbia - endocrinologist
Bottom line, the concensus was that I am a borderline case of hyperparathyroidism. My PTH levels have stabilized over the past year or so and I prefer not to have surgery. I monitor my calcium and PTH levels annually.
I also have osteoporosis, PD, high calcium levels in the urine, and an elevated parathyroid. My rheumatologist has put me on a mild half of a tab diuretic, every other day. Hope it works. I didn’t realize that there was a link with that and PD. Has anyone had success with the diuretics? What else should I know? My vitamin D level is good, as I supplement that.
It sounds like your rheumatologist suspects idiopathic hypercalciuria, a condition in which you lose calcium in the urine for no apparent reason. It can cause osteoporosis as well as kidney stones and is often treated with thiazide diuretics. These medications cause the kidneys to hang on to calcium and return it to the bloodstream.
Parathyroid hormone isn't usually elevated in IH, but perhaps it will go down when the diuretic kicks in and your blood calcium levels go up. If not, they'll probably refer you to an endocrinologist, as hyperparathyroidism can also cause excess calcium in the urine.
Not yet. My parathyroid is definitely elevated also. I have also lost a lot of weight the last couple of years, and have osteoporosis. I don’t know what to think.
Are you realy sure that you need surgery or could the problem be solved with diet and suplements? The thyroid is central to your production of hormones and links to the function of so many other organs that you realy need a specialist to analyse the problem.
It's the parathyroid, not the thyroid that's the problem. It controls calcium regulation in the body, and a nodule growing on one of my 4 parathyroid glands is sending out rogue messages that are pulling the calcium out of my bones. As much as I would love it, diet & supplements won't fix this.
These are parathyroid glands, NOT the thyroid. Literally means "close to the thyroid". I'm no fan of surgery and looked into diet and supplements and found nothing. There really is no time to waste (ie; my father's death), "wait & see" is not appropriate. Also, symptoms are not text book, they can present all different ways. Kinda like PD. Find a competent endocrinologist and persist.
I'd add that hyperparathyroidism can be a difficult diagnosis even for endocrinologists. It's usually suspected when a person's blood calcium levels are above normal range and parathyroid hormone levels are elevated too. But there can be outliers like my dad, whose calcium levels rose but never went above "normal." I've since learned that the range for blood calcium includes young children and teens, who often have calcium levels above 10. Older people usually don't, but many doctors don't seem to know that. If a value is not flagged as "high," they're not likely to notice a trend of steadily increasing values.
To make matters worse, parathyroid levels can fluctuate a lot, appearing "high" at one point and "normal" not long after, and adenomas don't always show up on scans. Which all means diagnosis can take quite a while. As beatles4ever said.....persistence required!
Exactly. Symptoms all over, or not corresponding with what is expected. Probably the best way to find an endo for this illness is to see if they specialize in this. Again, HPT facebook page can be very helpful.
My husband had high blood calcium levels for several years. Our PC doctor ignored it. He was concerned about his somewhat low level of D so had him on high dose, even though my husband works outdoors . I read up on parathyroidism and became really concerned. I asked for parathyroid test. It was high. Symptoms can be vague and it can leach calcium from the bones. I requested a Dexa scan. It showed osteopenia! He was 75. He had an active tremor and was showing other signs of Parkinson's. I didn't think we needed both osteopenia and Parkinson's! I called a parathyroid surgeon, sent his numbers. The surgeon's further testing confirmed one enlarged parathyroid gland. Surgery brought his calcium levels to normal. That was in August of 2022. That November he started L-Dopa.
(A year later his Dexa numbers had returned to normal.)
Everyone, keep watch on your blood calcium numbers. If high, you should take action. Interesting that there could be a link to PD.
The surgery is outpatient. No restrictions afterwards...easy. Best of luck!
Thanks for sharing your husband’s experience. Brilliant to hear that his Dexa numbers improved. I will post after surgery when I can assess if there’s been any impact on my Parkinson’s symptoms
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