Consult on Vitamin D/PTH issue, please.

[Marquis Mark]

Since getting my DS 5 + years ago I’ve struggled to keep my D up/PTH down. There have been a few times when I got a good lab report (D @ 50 ish, and PTH just below high end of normal), but for the most part I’m lucky to get my D to 40 and PTH slightly above range. I’m 57, male and already have osteopenia. Obviously, I don’t want to let the PTH stay high for a prolonged period.

At first, I went on/off to Dr. K for D shots. Sometimes I would get a delayed bump up in the level, more often I would not. Three years ago, he suggested I get a Sestamibi scan, which I did and it was normal (no adenoma). He then just said to resume Vitamin D, which I did.

Since then I’ve tried various brands and dosages of dry D. When I took 100K, my level dropped to 29. Most recently I took 200K/day for several months (spread out over the day). D barely went up to 40 and then started to drop (last read was 36 - see attached charts), so I went back to Dr. K. He told me to stop oral D, take weekly injections of D (50,000) for 6 weeks, wait 6 weeks and get tested.

Unfortunately, D actually went down a bit. I showed him the results and he told me to get another Sestamibi scan. He said I might need a parathyroidectomy and that I might also have D absorption issues (but wouldn’t getting D directly injected rule out D absorption issues?).

I do also take about 2,500 Calcium Citrate/day (spread out throughout the day.

Don’t know what to do anymore. I fear I’m just going to go through the process of getting Kaiser to give me another Sestamibi and it will come back negative again and then what?

Your experience, thoughts, advice, etc. are welcome. Thank you in advance.

 

[N00DLE]

Hi there,

I am dealing with severe osteoporosis and have had two wrist fractures as a result of it. I am 56 years old today and if you are not already seeing an Endorrologist t that specialises in osteoporosis I really recommend you do. My PTH, D and calcium were all in normal range and yet I still had severe osteoporosis. I take 50000 IUs of D3 everyday to keep my D around 50. I take 4000 mg of calcium spread out throughout the day. Plus to help with absorption you should be sure that your taking K1 and K2.

I was fortunate enough to be given fortero for 2 years which did improve my bone density quite a bit especially in my spine and now I am waiting to get my calcium high enough to start prolia injections.

Also if you haven't already I would recommend a 24 hour urine collection to analyse your kidney functions. You may need activated D3 to get your D up and that can only be prescribed.

Wishing you the best

Julie

 

[southernlady]

I am 56 years old today and if you are not already seeing an Endorrologist t that specialises in osteoporosis I really recommend you do. My PTH, D and calcium were all in normal range and yet I still had severe osteoporosis

The thing is, back before your surgery or even back before you even thought about it, how were those values, or like me, did you even know? I had absolutely no D in 2007. They couldn‘t even get it high enough to test. what do you want to bet that my PTH was thru the roof at that time. Everything has been fine since surgery but I had 56 years of living in this body, not worrying about my bones. I did get a baseline dexa in 2002/2003 thru my gynecologist and everything was fine then.

There are also factors you can not control. And there are some that are:
https://www.bones.nih.gov/health-info/bone/osteoporosis/overview

Factors that may increase your risk for osteoporosis include: Age, genetics, sex, family history. Yes, there are things you can change but so much you can not that if you’ve done everything right controllable, and still get it, don’t beat yourself up.

• Sex. Your chances of developing osteoporosis are greater if you are a woman. Women have lower peak bone mass and smaller bones than men. However, men are still at risk, especially after the age of 70.
• Age. As you age, bone loss happens more quickly, and new bone growth is slower. Over time, your bones can weaken and your risk for osteoporosis increases.
• Body size. Slender, thin-boned women and men are at greater risk to develop osteoporosis because they have less bone to lose compared to larger boned women and men.
• Race. White and Asian women are at highest risk. African American and Mexican American women have a lower risk. White men are at higher risk than African American and Mexican American men.
• Family history. Researchers are finding that your risk for osteoporosis and fractures may increase if one of your parents has a history of osteoporosis or hip fracture.
• Changes to hormones. Low levels of certain hormones can increase your chances of developing osteoporosis. For example:
  • Low estrogen levels in women after menopause.
  • Low levels of estrogen from the abnormal absence of menstrual periods in premenopausal women due to hormone disorders or extreme levels of physical activity.
  • Low levels of testosterone in men. Men with conditions that cause low testosterone are at risk for osteoporosis. However, the gradual decrease of testosterone with aging is probably not a major reason for loss of bone.
• Diet. Beginning in childhood and into old age, a diet low in calcium and vitamin D can increase your risk for osteoporosis and fractures. Excessive dieting or poor protein intake may increase your risk for bone loss and osteoporosis.
• Other medical conditions. Some medical conditions that you may be able to treat or manage can increase the risk of osteoporosis, such as other endocrine and hormonal diseases, gastrointestinal diseases, rheumatoid arthritis, certain types of cancer, HIV/AIDS, and anorexia nervosa.
• Medications. Long-term use of certain medications may make you more likely to develop bone loss and osteoporosis, such as:
  • Glucocorticoids and adrenocorticotropic hormone, which treat various conditions, such as asthma and rheumatoid arthritis.
  • Antiepileptic medicines, which treat seizures and other neurological disorders.
  • Cancer medications, which use hormones to treat breast and prostate cancer.
  • Proton pump inhibitors, which lower stomach acid.
  • Selective serotonin reuptake inhibitors, which treat depression and anxiety.
  • Thiazolidinediones, which treat type II diabetes.
• Lifestyle. A healthy lifestyle can be important for keeping bones strong. Factors that contribute to bone loss include:
  • Low levels of physical activity and prolonged periods of inactivity can contribute to an increased rate of bone loss. They also leave you in poor physical condition, which can increase your risk of falling and breaking a bone.
  • Chronic heavy drinking of alcohol is a significant risk factor for osteoporosis.
  • Studies indicate that smoking is a risk factor for osteoporosis and fracture. Researchers are still studying if the impact of smoking on bone health is from tobacco use alone or if people who smoke have more risk factors for osteoporosis.

 

[Marquis Mark]

Hi there,

I am dealing with severe osteoporosis and have had two wrist fractures as a result of it. I am 56 years old today and if you are not already seeing an Endorrologist t that specialises in osteoporosis I really recommend you do. My PTH, D and calcium were all in normal range and yet I still had severe osteoporosis. I take 50000 IUs of D3 everyday to keep my D around 50. I take 4000 mg of calcium spread out throughout the day. Plus to help with absorption you should be sure that your taking K1 and K2.

I was fortunate enough to be given fortero for 2 years which did improve my bone density quite a bit especially in my spine and now I am waiting to get my calcium high enough to start prolia injections.

Also if you haven't already I would recommend a 24 hour urine collection to analyse your kidney functions. You may need activated D3 to get your D up and that can only be prescribed.

Wishing you the best

Julie

Thank you, Julie. I'm sorry to hear about your issues. They're especially unnerving considering your D and PTH are OK. What is "activated Vit D" and how is it better than the dry D we use?

 

[Marquis Mark]

The thing is, back before your surgery or even back before you even thought about it, how were those values, or like me, did you even know? I had absolutely no D in 2007. They couldn‘t even get it high enough to test. what do you want to bet that my PTH was thru the roof at that time. Everything has been fine since surgery but I had 56 years of living in this body, not worrying about my bones. I did get a baseline dexa in 2002/2003 thru my gynecologist and everything was fine then.

There are also factors you can not control. And there are some that are:
https://www.bones.nih.gov/health-info/bone/osteoporosis/overview

Factors that may increase your risk for osteoporosis include: Age, genetics, sex, family history. Yes, there are things you can change but so much you can not that if you’ve done everything right controllable, and still get it, don’t beat yourself up.

• Sex. Your chances of developing osteoporosis are greater if you are a woman. Women have lower peak bone mass and smaller bones than men. However, men are still at risk, especially after the age of 70.
• Age. As you age, bone loss happens more quickly, and new bone growth is slower. Over time, your bones can weaken and your risk for osteoporosis increases.
• Body size. Slender, thin-boned women and men are at greater risk to develop osteoporosis because they have less bone to lose compared to larger boned women and men.
• Race. White and Asian women are at highest risk. African American and Mexican American women have a lower risk. White men are at higher risk than African American and Mexican American men.
• Family history. Researchers are finding that your risk for osteoporosis and fractures may increase if one of your parents has a history of osteoporosis or hip fracture.
• Changes to hormones. Low levels of certain hormones can increase your chances of developing osteoporosis. For example:
  • Low estrogen levels in women after menopause.
  • Low levels of estrogen from the abnormal absence of menstrual periods in premenopausal women due to hormone disorders or extreme levels of physical activity.
  • Low levels of testosterone in men. Men with conditions that cause low testosterone are at risk for osteoporosis. However, the gradual decrease of testosterone with aging is probably not a major reason for loss of bone.
• Diet. Beginning in childhood and into old age, a diet low in calcium and vitamin D can increase your risk for osteoporosis and fractures. Excessive dieting or poor protein intake may increase your risk for bone loss and osteoporosis.
• Other medical conditions. Some medical conditions that you may be able to treat or manage can increase the risk of osteoporosis, such as other endocrine and hormonal diseases, gastrointestinal diseases, rheumatoid arthritis, certain types of cancer, HIV/AIDS, and anorexia nervosa.
• Medications. Long-term use of certain medications may make you more likely to develop bone loss and osteoporosis, such as:
  • Glucocorticoids and adrenocorticotropic hormone, which treat various conditions, such as asthma and rheumatoid arthritis.
  • Antiepileptic medicines, which treat seizures and other neurological disorders.
  • Cancer medications, which use hormones to treat breast and prostate cancer.
  • Proton pump inhibitors, which lower stomach acid.
  • Selective serotonin reuptake inhibitors, which treat depression and anxiety.
  • Thiazolidinediones, which treat type II diabetes.
• Lifestyle. A healthy lifestyle can be important for keeping bones strong. Factors that contribute to bone loss include:
  • Low levels of physical activity and prolonged periods of inactivity can contribute to an increased rate of bone loss. They also leave you in poor physical condition, which can increase your risk of falling and breaking a bone.
  • Chronic heavy drinking of alcohol is a significant risk factor for osteoporosis.
  • Studies indicate that smoking is a risk factor for osteoporosis and fracture. Researchers are still studying if the impact of smoking on bone health is from tobacco use alone or if people who smoke have more risk factors for osteoporosis.

Thank you. That's great info! I do have PTH/D numbers from pre-surgery. They weren't stellar, but they WERE within range and the D could easily be increased with a prescription of those weekly green D2 softgels. I can only imagine what it might have increased to had I taken the 200,000 a DAY of D3 I've been taking recently.

Here's an interesting article Dr. K recently published of the results of oral vs injectable D:

https://bit.ly/3eYguqI

The thing is I did just do a series of 6 D injections and it didn't help. I hope it may just be a matter that they didn't help YET. I had a hard time reading that article (wish I'd paid more attention in science class) but it seems to suggest it could take months for the injections to work. Is that how you read it?

Also, seems like I've read some stuff here that says be careful about parathyroidectomies (maybe from Diana?), but that's what Dr. K suggested may be necessary. It just seems weird that I would suddenly need one of those right after I got the DS.

 

[southernlady]

D could easily be increased with a prescription of those weekly green D2 softgels.

Mine weren’t, at least not even close to enough. I was on the prescription D from 2007 to Oct 2010. My level only went from completely undetectable to 15 in over 3 years.
Knowing I was having the DS in Jan, I stopped those and took 50,000 a day of Dry D. In Jan when I had my preop labs, my D had gone from 15 to 57.

 

[N00DLE]

Thank you, Julie. I'm sorry to hear about your issues. They're especially unnerving considering your D and PTH are OK. What is "activated Vit D" and how is it better than the dry D we use?

Not quit sure. Waiting on guidance from my ENDO

 

[aaa]

I take about 5800mg calcium citrate per day. Plus Rocaltrol every other day. This is after working with a bone specialist at Yale due to pains and/or breaks throughout my rib cage for years. We began this protocol in late 2018 and I’m at about 94% “cured” (meaning little or no pain & no breaks). I’ve also done a Reclast infusion most years since 2013.

Before we began the larger doses of calcium and the Rocaltrol, my calcium number was only a bit low and my D was fine. However, Yale felt that was misleading which is why the doses were upped so much.

Perhaps any of these would help. I agree about the 24 hour urine. I was having to do them every 3 mos. and now do them yearly.

 

[N00DLE]

What does Rocaltrol do for osteoporosis?

 

[aaa]

What does Rocaltrol do for osteoporosis?

It helps with the calcium absorption. As my D was good, they felt somehow the calcium wasn’t being absorbed well enough. And, hopefully, it would aid in keeping it in my bones.

 

[Marquis Mark]

I take about 5800mg calcium citrate per day. Plus Rocaltrol every other day. This is after working with a bone specialist at Yale due to pains and/or breaks throughout my rib cage for years. We began this protocol in late 2018 and I’m at about 94% “cured” (meaning little or no pain & no breaks). I’ve also done a Reclast infusion most years since 2013.

Before we began the larger doses of calcium and the Rocaltrol, my calcium number was only a bit low and my D was fine. However, Yale felt that was misleading which is why the doses were upped so much.

Perhaps any of these would help. I agree about the 24 hour urine. I was having to do them every 3 mos. and now do them yearly.

Is taking that much calcium hard on your kidneys? Do they give you something to prevent kidney stones?

 

[aaa]

Marquis Mark My doctors are ok with it bc it's citrate. We had a discussion years ago when I began working with Yale doctors but I don't recall the exact reasons. Plus I don't eat high oxalate foods. At this point, we had to go that way bc of the spontaneous rib fractures and all the damage that was being done to my bones (they said it was akin to rickets).

 

[Marquis Mark]

Marquis Mark My doctors are ok with it bc it's citrate. We had a discussion years ago when I began working with Yale doctors but I don't recall the exact reasons. Plus I don't eat high oxalate foods. At this point, we had to go that way bc of the spontaneous rib fractures and all the damage that was being done to my bones (they said it was akin to rickets).

My urologist said oxilates tend to stick to calcium citrate, so if you take it at the same time as you eat your spinach and walnut salad you'll prevent some absorption of the oxialtes. Also, I think if you take Urocit (high dosage potassium) it keeps the risk of kidney stones down.

 

[aaa]

I like what your urologist said. Thankfully, I've been OK. But I'll email my Dr. about Urocit as I've had gallstones in the past and know what the pain is like. Thx.