Recent comments in /f/InternetIsBeautiful

TRLK9802 t1_iv02uq9 wrote

Reply to comment by Abishek_Muthian in When I was 32, I was told that my bones were like that of an 80 year old. I have built a web application to track bone health and monitor treatments for those like me. No sign-up, No personal data collected, Completely Free and Open-Source. by Abishek_Muthian

Please feel free to follow up with me any time. I'm happy to discuss lab values once you have them, etc.

Very few doctors are parathyroid experts, so it can be quite difficult to get a diagnosis.

Having normocalcemic hyperparathyroidism made my diagnosis tricky, but once I found the surgeon who went on to do my surgery, he was quite convinced that I had a tumor based on how my labs looked.

With normal parathyroid function, there is an inverse relationship between PTH and calcium...meaning if one is high within its range, the other should be low in its range (and vice versa). Most of my PTH and calcium levels were within their ranges, but toward the tops of their ranges, so the lack of an inverse relationship was telling.

Also, you will see that the lab range for calcium goes to around 10.2 to 10.4, but only kids and young adults should have calcium over 10.0; once you're about 30 years of age, calcium should be below 10.0.

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Abishek_Muthian OP t1_iuzt7wy wrote

Reply to comment by TRLK9802 in When I was 32, I was told that my bones were like that of an 80 year old. I have built a web application to track bone health and monitor treatments for those like me. No sign-up, No personal data collected, Completely Free and Open-Source. by Abishek_Muthian

Thank you for your detailed clarification, I realized para-thyroid could be different from usual thyroid gland anomaly only after my previous comment.

Your comment offers clear view of the distinction, I will get tested for the para-thyroid as well.

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Abishek_Muthian OP t1_iuzrskn wrote

Reply to comment by lyinghorizontally in When I was 32, I was told that my bones were like that of an 80 year old. I have built a web application to track bone health and monitor treatments for those like me. No sign-up, No personal data collected, Completely Free and Open-Source. by Abishek_Muthian

I feel you've done well by indulging in your research instead of blindly relying on diagnosis of a medical professional, There seems to be a general lack of scientific curiosity among medical practitioners treating bone diseases; I believe this comes from the fact that it's usually the elderly who come seeking treatment from them.

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lyinghorizontally t1_iuyzzxh wrote

Reply to comment by Abishek_Muthian in When I was 32, I was told that my bones were like that of an 80 year old. I have built a web application to track bone health and monitor treatments for those like me. No sign-up, No personal data collected, Completely Free and Open-Source. by Abishek_Muthian

Honestly, I had yearly blood work done for probably about the past ten years. Some for my work's health insurance and some for personal reasons. I noticed that my ALP seemed to be low every year. I spoke with my Dr. and he wasn't worried about it at all. He even wrote on the results ''OK'' next to it. Usually my Alp is in the 15 range.

At the beginning of February, I was working on some mental health issues that never seemed to really respond with medication and I went back to look to see if maybe my blood work could provide some answers. I started digging deeper into ALP because that was really the only thing that was constantly low. When I started doing some research I came across Hypophosphatasia.

I spoke with my Dr. and they told me they personally really don't know much about it, but they had looked it up after our first meeting and knew there wasn't much as far as treatment goes. Following my research I requested to get vitamin B6 testing and that came back as abnormally high. I kind of figured I was on to something then and requested the genetic testing.

As far as B6 goes, it is no wonder that this disease can cause some mental health/energy issues. Even though B6 may be abnormally high, someone with Hypophosphatasia doesn't process it correctly and it may not make it to where it needs to go. This is the way I understand it, but I'm not that great at understanding the scientific reports.

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TRLK9802 t1_iuy0w9y wrote

Reply to comment by Abishek_Muthian in When I was 32, I was told that my bones were like that of an 80 year old. I have built a web application to track bone health and monitor treatments for those like me. No sign-up, No personal data collected, Completely Free and Open-Source. by Abishek_Muthian

Thyroid glands and parathyroid glands are very different.

Parathyroid glands regulate calcium in the body. There are 4 tiny parathyroid glands behind the thyroid gland, thus the name..."para" means "next to," and while these glands are near each other, they perform entirely different functions.

Sometimes, for unknown reasons, a parathyroid gland will develop into a benign tumor (sometimes more than one gland is affected, but most of the time, it's one gland); this is primary hyperparathyroidism.

When there is a parathyroid tumor, the affected gland that has developed into a tumor goes into overdrive and the other glands go dormant. The tumorous gland pumps out lots of PTH (parathyroid hormone), and this signals to the body to increase the body's blood calcium level...but the calcium has to come from somewhere, and it will be sucked out of your bones and teeth.

So now you have calcium being removed from your bones, causing osteoporosis. Osteoporosis is only one problem caused by these tumors. While these tumors are not cancerous, they are deadly because they slowly kill you...it might take 20 years, but they will kill you eventually if you don't have surgery.

Any young person with osteoporosis should have have been checked for hyperparathyroidism; this means blood tests where calcium and PTH are checked together. Sometimes, these blood tests need to be repeated multiple times to get a clear picture of what's happening.

You can read more about hyperparathyroidism and osteoporosis here (this is the website of the surgeon who did my surgery):
https://www.parathyroid.com/osteoporosis.htm

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misplaced_my_pants t1_iuxudj7 wrote

Reply to comment by Abishek_Muthian in When I was 32, I was told that my bones were like that of an 80 year old. I have built a web application to track bone health and monitor treatments for those like me. No sign-up, No personal data collected, Completely Free and Open-Source. by Abishek_Muthian

Ah I see that's definitely a tricky place to be.

You might want to reach out to the folks at Barbell Medicine.

They're a group of mostly medical professionals like doctors and physical therapists who are also elite or advanced strength athletes, so they might be able to work with you on your specific issues to find a way to improve your bone density and strength in a way that doesn't cause pain.

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endymion1818-1819 t1_iuxdc94 wrote

Reply to comment by Abishek_Muthian in When I was 32, I was told that my bones were like that of an 80 year old. I have built a web application to track bone health and monitor treatments for those like me. No sign-up, No personal data collected, Completely Free and Open-Source. by Abishek_Muthian

I've got a similar condition though not as serious as you have it seems. I broke my hip last year as a result. I'm 42. This is a great innovation thanks!

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Abishek_Muthian OP t1_iux79ze wrote

Reply to comment by air-hug-me in When I was 32, I was told that my bones were like that of an 80 year old. I have built a web application to track bone health and monitor treatments for those like me. No sign-up, No personal data collected, Completely Free and Open-Source. by Abishek_Muthian

I'm sorry for your loss and thanks for sharing the story of your husband's ailment.

I haven't noticed blue tint in my sclera and I usually check my eyes quite regularly. But I do suspect some underlying genetic disease as a cause for my Osteoporosis other than my existing disabilities (Achondroplasia). I'm planning to get a genetic test as well.

The real MVP in this thread are people like you sharing the stories of their ailments or that of their loved ones. This will give necessary direction to many people for years to come.

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Abishek_Muthian OP t1_iux1spb wrote

Reply to comment by vellant in When I was 32, I was told that my bones were like that of an 80 year old. I have built a web application to track bone health and monitor treatments for those like me. No sign-up, No personal data collected, Completely Free and Open-Source. by Abishek_Muthian

Thank you, I will look up the registry.

I was diagnosed with Osteoporosis when my spine fractured and lead to spinal stenosis. I already suffer from Achondroplasia.

Although I seek treatment for Osteoporosis from an endocrinologist, There no real interest in investigating the cause and neither there's communication between the endocrinologist and the spine-ortho. Albeit one of the best ortho hospitals in the country.

I'm planning to look out for another endocrinologist who's willing to indulge in investigating my condition.

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Abishek_Muthian OP t1_iux0ska wrote

Reply to comment by shitmattsays in When I was 32, I was told that my bones were like that of an 80 year old. I have built a web application to track bone health and monitor treatments for those like me. No sign-up, No personal data collected, Completely Free and Open-Source. by Abishek_Muthian

I'm getting treated only for the symptoms as well with biphosphate injection every year, Since I already have Achondroplasia(Dwarfism) I think there's no real interest to investigate the cause; Besides its the scientific rigor needed is not available where I live.

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shitmattsays t1_iux0qx5 wrote

Reply to comment by ian4real in When I was 32, I was told that my bones were like that of an 80 year old. I have built a web application to track bone health and monitor treatments for those like me. No sign-up, No personal data collected, Completely Free and Open-Source. by Abishek_Muthian

Sounds all too familiar. We've done several rounds of blood/urine tests and our next step is genetic testing. I have an appointment with the genetics team at the Mayo Clinic early next year to see what they have to say. Cheers!

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Abishek_Muthian OP t1_iuwyvtm wrote

Reply to comment by TheSpanxxx in When I was 32, I was told that my bones were like that of an 80 year old. I have built a web application to track bone health and monitor treatments for those like me. No sign-up, No personal data collected, Completely Free and Open-Source. by Abishek_Muthian

It pains to imagine what your dad must have undergone, It's been a hell for me since I was diagnosed among with other existing disabilities.

Thank you for sharing your dads story it gives hope to me and others like me to keep fighting.

You talking about your dad's health issues seems like you have him at very high regard, I wish you and your dad my best.

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air-hug-me t1_iuwy5x2 wrote

Reply to When I was 32, I was told that my bones were like that of an 80 year old. I have built a web application to track bone health and monitor treatments for those like me. No sign-up, No personal data collected, Completely Free and Open-Source. by Abishek_Muthian

Hi! This is really cool. Kudos for taking control back when osteoporosis seems to take a lot of it.

My husband passed away six weeks ago. Surprisingly not from his bones but another reason altogether. But he averaged a break a year. Some more catastrophic to our life than others. His began at 30. We started seeing a specialist in Dallas at a bone and mineral clinic and he had the markers for osteogenisis imperfects (brittle bone disease) which is genetic when the entire time he had been diagnosed with osteoporosis. One of the major signs was his sclera (whites of the eye) had a faint blue tint to them. He was all set for genetic testing right before he passed away. Figured I would mention in case your sclera might be slightly tinted. In this case the bones do not use collagen appropriately causing the brittle and breaks.

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