What is desired level of Vitamin D for those with osteoporosis?

Posted by ripley @ripley, Apr 26 3:42pm

I'm trying to find out what the desired blood levels of Vitamin D should be if you have osteoporosis, My levels have always been on the low side of the range 30-100. Six months ago it was 27.8 so my Dr increased my Vitamin D supplement to 3,000 IU/day. Now my levels are 40.9. I read they should be above 50. Can anyone provide more information?

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@michaellavacot

From the research I have done, the optimum 25(OH) vitamin D level for osteoporosis is 30-50ng/mL (75-125nmol/L). You want to adjust your vitamin D3 intake to get into that range which is typically around 1000 to 2000 IU/day.

Here are the footnotes for the studies if you want to look them up.
1 - https://ods.od.nih.gov/factsheets/VitaminD-HealthProfessional
2 - https://pubmed.ncbi.nlm.nih.gov/28722941/
3 - https://link.springer.com/article/10.1007/s00198-023-06802-x
4 - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5471662/
5 - STOP IT Trial https://academic.oup.com/jcem/article/107/5/e1932/6504006

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Thank you for doing this research.

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@windyshores

On Tymlos I did 3,000 units/day because I read that Tymlos "eats" D3. My level was 52 before starting Tymlos at a dose of 2,000 units/day and stayed stable in the low 50's throughout treatment. Now I am back down to 2000.

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Now that you’re off Tymlos what medication are you using? My last month is June so I’ve got a decision to make and none of them float my boat. May try bioidentical hormones for a while to see if they hold my gains.
Had bloods done recently and my D3 level was down so I’m increasing to 4000 units a day. It’s a hit and miss on this journey. A bit exhausting at times. Rose

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@dooshie

Now that you’re off Tymlos what medication are you using? My last month is June so I’ve got a decision to make and none of them float my boat. May try bioidentical hormones for a while to see if they hold my gains.
Had bloods done recently and my D3 level was down so I’m increasing to 4000 units a day. It’s a hit and miss on this journey. A bit exhausting at times. Rose

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@dooshie I have done 4 months Evenity after Tymlos and am stopping that. In 2-3 months I will have a 20% test dose of Reclast (due to kidneys and afib) with IV hydration and slow infusion and plenty of tylenol. My second u infusion will be in 3-6 months.

Reclast works to stop turnover and also coats bones to "lock in" gains. I have no idea if hormones would help and wonder what your endocrinologist says. I would be nervous taking the risk of losing what I gained after doing tummy shots for two years!

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Why are you ending Evenity? I have researched it and I’m concerned about heart issues. I’ve had supraventricular tactachycardia in the past so I’m weary of that med. My rheumatologist mentioned kidney issues with Reclast and said she recommends her patients drink 1/2 their body weight in ounces of water for 3 days after infusion.
How did u do on Tymlos? I am very concerned of losing my gains but pray the hormones will hold them. I will be researching Reclast over the next month then decide what will replace Tymlos after June. Appreciate your input.

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@dooshie

Why are you ending Evenity? I have researched it and I’m concerned about heart issues. I’ve had supraventricular tactachycardia in the past so I’m weary of that med. My rheumatologist mentioned kidney issues with Reclast and said she recommends her patients drink 1/2 their body weight in ounces of water for 3 days after infusion.
How did u do on Tymlos? I am very concerned of losing my gains but pray the hormones will hold them. I will be researching Reclast over the next month then decide what will replace Tymlos after June. Appreciate your input.

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The studies on cardiovascular risk with Evenity showed no difference with placebo and small but significant difference with alendronate, but the study theorized that might be because alendronate is slightly protective, not because Evenity is harmful.

I have some neuro issues that have been greatly increased with Evenity (burning , tingling). I only intended to do the first anabolic months anyway since I already did Tymlos and am ready to lock in gains with Reclast. My spine went from severe to borderline on Tymlos and my hip did well too. I just wanted an extra oomph from a few months of Evenity.

If you are going to do oral hydration for Reclast, my nephrologist said to hydrate the day before, day of and day after. You can also ask for IV hydration.

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@windyshores

@dooshie I have done 4 months Evenity after Tymlos and am stopping that. In 2-3 months I will have a 20% test dose of Reclast (due to kidneys and afib) with IV hydration and slow infusion and plenty of tylenol. My second u infusion will be in 3-6 months.

Reclast works to stop turnover and also coats bones to "lock in" gains. I have no idea if hormones would help and wonder what your endocrinologist says. I would be nervous taking the risk of losing what I gained after doing tummy shots for two years!

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Hi, my spine Dr indicated that I should go on Tymlos because of my low readings. He would not able to operate if I needed a fusion. I have trying to understand how it builds bones, the differences, is their any literature anyone has found that helps.

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@karensm

Hi, my spine Dr indicated that I should go on Tymlos because of my low readings. He would not able to operate if I needed a fusion. I have trying to understand how it builds bones, the differences, is their any literature anyone has found that helps.

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@karensm McCormick's book "Great Bones" is a good resource. I like Dr. Ben Leder's YouTube video Combinations and Sequencing.

My spine went from severe to borderline on Tymlos. I did not tolerate a full dose at first and restarted at a lower dose and moved up. The Tymlos pen has "clicks" that measure the dose in 10mcg increments with a full dose at 80mcg.

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@windyshores

@karensm McCormick's book "Great Bones" is a good resource. I like Dr. Ben Leder's YouTube video Combinations and Sequencing.

My spine went from severe to borderline on Tymlos. I did not tolerate a full dose at first and restarted at a lower dose and moved up. The Tymlos pen has "clicks" that measure the dose in 10mcg increments with a full dose at 80mcg.

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Would you mind sharing your DEXA scores before and after taking Tymlos? How long were you on it? I asked my endocrinologist about starting at a lower dose, as I've read some people start at 1-2 clicks. He said he'd never heard of that.

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@karensm

Hi, my spine Dr indicated that I should go on Tymlos because of my low readings. He would not able to operate if I needed a fusion. I have trying to understand how it builds bones, the differences, is their any literature anyone has found that helps.

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Would you mind sharing your DEXA scores? Have you starting taking Tymlos yet? How long does your Dr want you to take it and has he suggested a follow-up drug to lock in your gains?

I asked my endocrinologist about starting at a lower dose, as I've read some people start at 1-2 clicks. He said he'd never heard of that.

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@ripley

Would you mind sharing your DEXA scores? Have you starting taking Tymlos yet? How long does your Dr want you to take it and has he suggested a follow-up drug to lock in your gains?

I asked my endocrinologist about starting at a lower dose, as I've read some people start at 1-2 clicks. He said he'd never heard of that.

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@ripley try the full dose first. If you cannot tolerate it, go down to two clicks but try to move up as fast as you can. Doctors do not know about this but when it helps patients get on the medications, they are on board. They cannot prescribe this: it wasn't studied.

I would think one click is useless. Four might help (1/2 dose) but better to try to get to at least 6 or 7.

This whole suggestion of lowering dose was intended to help people get on to a therapeutic dose by helping the body get used to it, but it was not suggested to take a low dose long term.

Basically, it's better than quitting altogether. If full dose is too much try 1/2 dose before going down to 2 clicks which is probably useless unless only used to get up to more.

At 18 months on Tymlos my spine went from -3.7 to -2.5 (20% gain, from severe to borderline). My hip went from -3.3 to -2.9 (9 % gain). Femur neck from -4.1 to -3.6 (still a concern). It should be noted that I had not taken any meds before this. I mostly did 7 clicks out of 8.

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