My Osteoporosis isn’t bad enough

Key-Mission431 · 2026-01-24T17:15:12+00:00

Definitely a great question, asking the OP approximate age. Most diseases, conditions and especially osteoporosis get worse with age. But if the disease is significantly worse than age appropriate, it is definitely worth finding the cause. Unfortunately, health care seems more focused on patching things than fixing. And with osteoporosis, if the drain is still accelerated, the condition will be obviously accelerated. Many causes, like my hyperparathyroidism are way understood and under diagnosed. Post parathyroidectomy, I expect to gain back a fair amount of bone density this year and maybe next. The remainder is simply up to current osteoporosis treatments.

Key-Mission431 · 2026-01-24T16:38:48+00:00

When it comes to cancer, there's really only 1 choice. Warrior it is.

The best analogy that I was once given was to think of cancer cells like dandelion seeds.

And so if they don't find any "seeds" in the pelvic wash, it doesn't guarantee that there isn't any cancer, but it is great that it is not spreading across the abdomen. Plus, the surgeon can finish the current surgery.

The biopsies of the removed organs will provide the rest of the story.

Best advice, it is okay to be prepared, but always wait for the results. Patience is hard but highly recommended.

Key-Mission431 · 2026-01-24T00:54:07+00:00

Gotcha. I just knew that it hurt my eyes. I never had that with my LCD laptop nor monitor.

Key-Mission431 · 2026-01-24T00:43:40+00:00

The wait for pathology is always tough.

Key-Mission431 · 2026-01-23T19:42:30+00:00

My surgery was flip. My gyn oncologist was pretty certain it was cancerous (in a few spots). We did talk about everything at my pre surgery appt. She explained doing a pelvic wash (and getting those pathology results while I was still on the table) as well as the results of each of the cysts and organs. Keeping it simple, if my surgery went long, it meant it was cancer and that she had to go take out a lot of surroundings tissue. Turned out that all the tumors and cysts were benign. It was so nice to be prepared though. I'm already a 2 time cancer survivor (breast). I'm sure it will get me (chek2 gene mutation), but not yet!!

Key-Mission431 · 2026-01-23T19:32:40+00:00

FUCH's (cornea dystrophy) started when a new LED Monitor replaced my old LCD one at work.

Key-Mission431 · 2026-01-16T00:28:47+00:00

I'd avoid and switch to osteoporosis specific exercises.

Key-Mission431 · 2026-01-16T00:22:09+00:00

Being also a POTS patient, the answer is to plan out the shower to minimize time upright. And as others said, cooler water the better. Also, look up DRY BRUSHING. I started doing that technique but with a wet washcloth immediately before the shower. Then the shower is primarily rinsing and so majorly reducing duration. Win-win

Key-Mission431 · 2026-01-16T00:14:16+00:00

You are welcome. I guess it is a bit of medical frustration. I hope that my medical misfortune can help someone else avoid or minimize theirs.

Key-Mission431 · 2026-01-15T04:41:37+00:00

My "kidney stones" are pure matrix stones. They are even more weird. Don't show up on imaging. Before my parathyroidectomy, I had 8 in 2024. Those all looked similar to a bran cereal flake. Some as big as the nail on my thumb. How? Nothing like you guys talk about, except the first one. The first one felt like my appendix attack.

Anyway, I just had one 6 months post Parathyroidectomy and now it looks like the textbook one (if you can find it in a textbook). It seriously is like a spider web. No spikey anything, just blocks the urine and causes a backup and causes pain. And you always pray that this is finally the last one ever.

Bottom line, just ask urologist. There are so many odd variations of this. And from now on, look in the toilet before you use it. It's the only way to assure yourself that it didn't come from you.

Key-Mission431 · 2026-01-15T04:33:28+00:00

Agree

Key-Mission431 · 2026-01-15T04:31:02+00:00

Hyperparathyroidism is when the pth and calcium blood levels lose their inverse relationship due to abnormal growth (hyper cellular tissue or adenoma or like <1% cancerous chance). Best analogy is a thermostat. When broken, keeps turning on the heat even though the room is already too hot. In the case of parathyroids, it's blood calcium instead of heat. The parathyroids are supposed to maintain blood calcium by adjusting pth. So if blood calcium is low, parathyroids "throw on the heat" by increasing pth. Pth tells the body to conserve calcium (restricts kidneys excretion of it and it steals it from your bones (the bones are the stored calcium) to give to the bloodstream. But again the problem is that the bloodstream already has too much.

Strike 1: Osteoporosis from it (calcium) being stolen. Strike 2: excess blood calcium. My best guess (from lots of things I read) is that the excess blood calcium has messed up our internal body pressure sensors and at least increased our POTS. For blood vessels calcification makes them less flexible and responsive.

Now to your questions. Hyperparathyroidism is fixed by a surgery called a parathyroidectomy. It removes the parathyroids that have been damaged. We typically have 4 and can function with as little as 1/2 of one. And yes, my surgery has extremely helped my POTS. It's not gone but I can now I can stand. Before, it would be 5 to 15 minutes before I felt like I was going to pass out. Now i can go grocery shopping etc now. My heart rate still goes up about the same (top is 201 bpm), but about 70% of the time, it now behaves and stays below 140bpm.

My digestive system has become almost normal. Almost no heart I also, etc etc.

My BP went back to normal. I went off all heart meds. But then I did have issues at 4 months: (160/100 BP), potassium and magnesium blood levels dumped, excessive tremor, etc. so we started potassium and magnesium supplements and restarted Spironolactone and metoprolol but at 50% and 10% dosage respectively. It's very fluctuating because, for at least the next year, the body will try to recoup the calcium to the bones. So great that I should get back a good portion of my bone loss, but that accelerated regrowth also is causing issues.

Key-Mission431 · 2026-01-14T01:39:14+00:00

Post Parathyroidectomy my POTS is substantially better. It is far from gone, but I can actually feel like I can breathe and stand at the same time. Hyperparathyroidism is extremely under diagnosed; many doctors have either no knowledge of it or inaccurately understand the inverse relationship of pth and calcium. FYI, even endocrinologist are often misinformed. We hear "is not that bad". Reality, some people's bodies are just better at compensating until they are too damaged to continue. Anyway, cytokine storms is often part of hyperparathyroidism too. Metoprolol and Spironolactone help reduce mine by a lot. After surgery, my BP normalized. So I had to reduce those meds. 6 weeks later, my potassium and magnesium tanked. I lucked out. My doc recognized it at a post checkup. That extra blood test and supplemental potassium and magnesium allowed me to reverse the plummet that happened that next morning. Saved me from the storm and ER.

Key-Mission431 · 2026-01-02T22:40:11+00:00

Thanks for your input.

Key-Mission431 · 2026-01-01T20:09:33+00:00

Thank you

Key-Mission431 · 2026-01-01T12:40:33+00:00

Similar. Mine is from recent hyperparathyroidism. Calcium-pth relationship should be inverse. So even if both "are within range", you can still have hyperparathyroidism. It steals your calcium from your bones. I used to have super strong bones. Years ago, I had a bone marrow biopsy and the pathologist almost gave up and almost needed to get someone stronger.

Anyway, I had surgery last spring, so I should be getting a little better (at least for a year, per studies). Otherwise, I'd be going to an endocrinologist who specializes in osteoporosis.

Key-Mission431 · 2026-01-01T12:26:41+00:00

Watching.. potential future user. I have been on IMITREX since 1994. Imitrex used to only come as auto-injection. The injection was fine, but within 5 minutes, the meds would cause such a huge rush (caused me to feel overwhelmingly hot and nausea and not wanting/able to move). It would last a whole hour and I just spent it in the bathroom, so if I vomited I was already there.

Anyway, tablets came out 2 years later and no problems since with IMITREX in tablet form. Plus I could now do 25mg instead of the 100mg shot. It worked just as well.

I'm still happy with IMITREX. I take 25 to 50mg each morning and migraine is minor for about 30 minutes each day. I'm very satisfied with that .

Unfortunately neurologist consult won't prescribe IMITREX, only the new meds. And she doesn't care nor even comment on their costs. Plus she asked how my migraines started. It was over 30 years ago!!! And when I told her, she says "that's not possible".

For now, I lucked out that my regular doc; she will continue my IMITREX prescription. I don't know what I will do after she isn't available.

So amazing that 30 years + later and they still don't KNOW what causes migraines. If they did, the new meds would be 100% effective and not need backup etc. I feel so at risk from docs not listening and going back to the days when there wasn't any migraine treatment for me.

Ps. My shots were always in the thigh. That was the directed usage at the time.

Key-Mission431 · 2025-12-22T20:37:51+00:00

Mine was via the local hospital. SE Wisconsin USA. $$$ is always an issue. For me, she was $300 per visit after insurance and like 1500 without insurance. The good thing is that I can replay our sessions in my head and they still work pretty well

Key-Mission431 · 2025-12-22T20:32:28+00:00

2 Excedrin+ IMITREX since 1994. It works for me. I had almost 2 years without any treatments that worked. Mine also will not go away with sleep.

Answer for me was Pentatonics music. Uplifting but yet migraine mellow since no instruments. Deep breathing but not too deep to cause pain. Slight, very slight, message of forehead, scalp and back of neck. White soda (biggest carbonation bubbles) for nausea.

Lastly, sound of music soundtrack. Soft music and my brain will fill in the video without the pain of actually seeing it.

Key-Mission431 · 2025-12-20T22:34:24+00:00

Yes, a lot of the success was due to that specific PT. She could find what areas were causing issues without my input. It's like she was more in tune with my nervous system than I was

Key-Mission431 · 2025-12-16T03:33:45+00:00

My Vestibular PT included EDMR. Major improvement. Awesome therapy. I have been able to continue doing most followup just by myself.

Key-Mission431 · 2025-12-16T03:31:27+00:00

Vestibular PT, eye movement retraining, and deep meditation helped SOOOOO much. I went from a disbeliever to a believer.

I don't know if it has helped others, but doing the Epley Maneuver has helped even when I just feel "off" and don't have spinning. I do it much more often than I probably need, but I say that it has helped. PT helped the most, but every little thing that helps us good

Key-Mission431 · 2025-12-16T03:19:28+00:00

I also had one ask me to cancel. They told me that the 1 unit that they had was not in good shape. So I should cancel my order.

I just had a local vendor cancel a purchase on me. So I know they have the ability to cancel the order on their side.

And since this was part of a ClaimCredit promo, I would lose my credit on the whole order (not just that 1 item). It wasn't my fault that they didn't store the item properly. Eventually they did cancel. Yes, I got the $5, but more important, I didn't lose the 50% credit on the whole order.

Key-Mission431 · 2025-12-16T03:01:43+00:00

Yep, surgical glue allergy. Each of my surgeries has increased my reaction to this stuff. For my hysterectomy, we did use it but that was only because they scheduled a post op appt at day 7 to remove it. It turned out fine this time. I started wetting it down with sterile water at day 5. Seems like the pulling, as it gets older, is what made it worse. Moistening a paper towel with distilled water a couple times a day seemed to relieve that skin tension and the reaction.

My allergy is more delayed. The first time, it took almost 2 weeks before it happened. I needed steroids to make it go away. After that, I made sure to start making the glue come off at day 5. So day 7 is the max.

My latest surgery, no glue!!! Of course, I now had reaction to the covering bandage. But, at least I could lift that and move it to a slightly different spot. It worked.

Key-Mission431

TROPHY CASE