Primary hyperparathyroidism signs that you may need surgery | Asymptomatic pHPT

[@donnab3765]

I'm under 50, and I was made to watch and wait for over 10 years by my doctors. All along they suspected hyperparathyroidism but did nothing because of the guidelines they follow and is not practical for patients as they pick and choose what is appropriate. They don't cater for all types of hyperparathyroidism. In the meantime my kidney function was constantly declining and could have been prevented. No mention of osteopenia until after I had surgery as well as having a kidney stone. Prevention is better than waiting for all this to happen. We can't wait til someone has a cardiac arrest or stroke before anything is done.

[@saloncentricmagic1]

It really is madening, I hope your health is now improving, I too mentioned my Calcium during early Covid to my OBGYN and she poopoo it off ... saying ohh it's fine ...it may have prevented me getting to Osteoporosis....thank goodness my new PC listened and did the right testing... although my endocrinologist didn't move quick at all ...went over her and straight to surgeon...thank God for the right test he sent me for... Found my big tumor...So I feel your pain with proper protocol ✨🙏 Be well

[@geroconnor5222]

Yes, prevention has to be the best way to go. Two doctors I spoke will advised that I have PHPT, my surgeon is holding off. I have osteoporosis on back and hip. But because my PTH is in the normal range he's not sure... very frustrating 😕

[@helenyoung25]

My numbers were all at the high “normal” range. I had progressive osteoporosis in my 50’s and 5 bone fractures. After researching I was pretty sure I had hyperparathyroidism. Finally got a doctor to give me a CT scan with contrast. Yep, had an adenoma on one of my glands. Just had surgery and feeling better already. My bone pain is gone. Advocate for yourself.

[@rexmonarch2]

My domestic partner has hypercalcemia, hair loss, osteoporosis, brittle bones, stage 3 kidney disease, depression, fatigue, memory loss, anxiety, brain fog, etc and finally after several years and several doctors saying she was just fine she is scheduled for consultation before approval of parathyroid surgery. I am angry that her quality of life has been impacted by this cavalier disregard of her obvious symptoms. Finally, the turning point of this was that she got a new kidney doctor and he was shocked that the disease was allowed to progress so far and immediately recommended surgery.

[@saloncentricmagic1]

Hello, curious...Why don't they also bring attention to doing a Nuclear scan or iodine scan to look for tumors ..my endocrinologist dragged her feet with a million test ( which by the way showed Definitely Hyperparathyroidism) I by passed her and went straight to a Surgeon who preformed Parathyroid surgery.. he ordered these scans and easily found and saw my large adenoma. I adore and still watch all your videos....Iam 7 months post now ✌️

[@redtailpilot]

Yeah I guess it depends on who your dr is. Mine sent me for a bunch of scans and two were nuclear scans. He didn't play around forever and immediately recommended a surgeon to me. Had my surgery in January. 58 yr old male, so I fall outside the norm (post menapausal women). I'm glad I had it done after multiple scans and my Dexa bone denisty scan showed Osteopenia (a word I'd never heard before). I'm so glad that my primary physician detected the high calcium and reduced kidney function...over two years of regular physicals and then decided to send my to specialist last year for further testing! BTW In my particular case and based on my extensive research, all indications point to my Parathyroid adenoma being a result of prior radiation treatment that I had 30 years ago, to treat a Keloid scar on my neck! Crazy but radiation to the neck and head (cosmectic or other reasons), has been a known factor in the formation of Parathyroid tumors (moreso than thyroid tumors)!!!

[@saloncentricmagic1]

@@redtailpilot Wow, that's absolutely crazy from radiation. I often wonder I'll be 57 in a couple months. I had bladder cancer at 37 and have had treatments BSG treatments. They're called and then I had another operation another 10 years later and they did like a chemo so you often wonder what could cause it. I'll never really know. I'm so glad you're doing well. I have osteoporosis so I go from my deck scan next month. Hopefully I'll have some bone improvement. I have parents that are in their '80s and they have good bones. They're doing better than me 😆

[@redtailpilot]

@@saloncentricmagic1 Yes I was surprised to find out as well and I have had a few doctors confirm that my tumor could definitely have come from the radiation. Google _ Parathyroid adenomas following irradiation. When I was 20, I had surgery to remove an infected lymph node, which was the size of a small grape in my neck! It wasn't painful and the doctors don't know what caused it. After the stiches were removed, it developed a keloid (something I had no clue of). I had the keloid removed and each time, it grew back. Then the last doctor recommended the radiation treatment as a possible solution, which only slowed the growth of the new scar, but didn't prevent it. It eventually stopped getting bigger, thank God. I wear a patch over it when I go out in public, which looks better cosmetically. I'm all for radiation therapy to treat cancer, if needed and probably would do so myself. But after my experience (and based on the opinion of many plastic surgeons), it should never be given to treat a cosmectic scar! Stay strong. I wish you all the best!

[@lordsuji]

How easy was it to jump straight to a surgeon? This is what im afraid of, the difficulty of doing it without help from my doctors. They have all been against me and refusing the data, because they arent aware of it and per usual... Their ego's flare up when as a regular non doctor, I try to suggest anything ive learned about. They have straight up told me that none of these symptoms apply to hyperparathyroidism, and when I explain that Endo Surgeons and research says the opposite, I can feel the hate in their face while they try to gaslight me that im mistaken. I am alone in this battle, and its been 5-6 months since everything started getting rapidly worse. They tell me to go to my physical therapy and keep suggesting fibro. But I have severely low Vit-D, raised calcium, VERY high calcuria, high PTH, chronic kidney stones for 2 decades, and every symptom you can find correlated to this nasty disease. :(

[@RM.....]

I wish we had good doctors like this here in connecticut. All docs in my areas love giving pills rather than actually finding out what the issue is. 😡

[@beverlybalan8852]

My Dr. Is sending me to Boston

[@sociallyzen311]

I have had slightly increased calcium for years. Dr's never worried about it. I did my own research and asked about hyperparathyriodism so they did a test. My PTH is 140! I'm about to have my gallbladder removed due to my constant stomach pain N&V and other issues. If I hadn't requested these labs I would have had a surgery I didn't need! I've had years of health issues related to this.

[@GG-qy2js]

I’m dealing with same and asking for a PTH. Even in ER for BP I mentioned thyroid and they didn’t do it. Standard of care is failing!

[@kidges3132]

I have PTH 145. Normal calcium and Vitamin D. I have osteoporosis since age 50. It has gotten worse (I’m now 62). I’ve had kidney stones over the years. I had the urine calcium 24 hour test twice and it was normal. I had a previous high PTH about 3 years ago followed by one normal PTH . Fast forward to now 145 PTH. My endocrinologist suspects an adenoma. I have a nuclear scan scheduled for 6/28. I just wanted your opinion. Thanks in advance

[@kathycolvin7682]

Hi...what did your scan show....mine is this week.

[@lovelylipsticklady]

I want the surgery because the memory loss, anxiety, depression, and pain are making my life miserable. 😢😢😢

[@nancylindsay4255]

I, too, have found that going straight to endocrinology SURGERY rather than endocrinology is far preferable. I'm not sure if this is easily accomplished. I think it helped significantly that I previously had parathyroidectomy surgery in the same hospital practice.

[@karenpeart5997]

Do you get hair thinning,or loss

[@gladysg1966]

Yes, I did.

[@luannconsentino1188]

I was recently told by my primary care Dr. that I have hyperparathyroid. Parathyroid hormone 125 pg/mL, Calcium serum was 10.4 in March but went down to 9.7 last month, Calcium ionized 5.4, Vit- D normal, TSH w/reflex normal. I see Endocrinologist in few wks.

[@LarianMD]

Good luck Luann, it definitely looks like hyperparathyroidism. You need to see a parathyroid surgeon.

[@luannconsentino1188]

@LarianMD I see Endocrinologist tomorrow.

[@luannconsentino1188]

Also, going for bone density scan in several weeks. My PTH is 157(normal range 14-104 pg/mL), Calcium is normal. Waiting to hear from my Endocrinologist.

[@luannconsentino1188]

@LarianMD My Endocrinologist's notes say most likely diagnosis is Normocalcemic Primary Hyperparathyroidism. But he is waiting for bone density scan results. My PTH high, calcium serum normal not high, Vit D normal.

[@kidges3132]

@@luannconsentino1188your numbers sound like mine. 145 PTH and normal calcium and vitamin D. My vitamin d was borderline actually but not flagged as low. Do you mind sharing your symptoms? I do have osteoporosis already since I was 50. I’m now 62. I feel like I have anxiety and some depression. I pee all the time and I’m constantly thirsty. I’ve noticed that I’m more tired than usual. Anyway I just wanted to see what someone else’s symptoms are. Thank you

[@GG-qy2js]

Cal slowly moving up .2 yearly. As it goes up others things show up from your list. Never had pth tested. My blood pressure is high enough ER did headCT. Standard of care needs training updates. Help.

[@SandraOtero-qk6jc]

I have crippling fatigue. I feel so sick. I got DNR DNI tattoos on my left chest.

[@beverlybauer3820]

Stumbled here after finding out I have asymptomatic primary hyperthyroidism due to a benign tumor. My endocrinologist 2 years ago basically just told me nothing I could do until I got osteoporosis. Never mentioned other symptoms I might experience. After listening to several of your videos, I feel so much better informed and able to make an educated decision when the time comes on whether or not to have surgery. Thanks so much!

[@mariluzafanador4073]

Keep pushing and get that tumor removed once yiu do you will feel amazing

[@redtailpilot]

58 yr old male, so I fall outside the norm (post menapausal women). I had my parathyroidectomy in Jan and I'm glad I had it done after multiple scans and my Dexa bone denisty scan showed Osteopenia (a word I'd never heard before). So, for a doctor to tell you to wait until you get Osteoporosis is questionable (to say the least). Find another doctor! I'm so glad that my primary physician detected the high calcium and reduced kidney function.... over two years of regular physicals and then decided to send my to specialist last year for further testing! BTW In my particular case and based on my extensive research, all indications point to my Parathyroid adenoma being a result of prior radiation treatment that I had 30 years ago, to treat a Keloid scar on my neck! Crazy but radiation to the neck and head (cosmectic or other reasons), has been a known factor in the formation of Parathyroid tumors (moreso than thyroid tumors)!!! Good luck

[@redtailpilot]

@@mariluzafanador4073 Absolutely !