Beta Thal Minor disgnosed with Severe Osteoporosis

I am a 30 yr old beta thal minor woman - I recently began seeing a hematologist who ordered several tests including a bone density scan. The scan was done at 2 places - spine and hip. My spinal bone density came out to be very low - diagnosed as Severe osteoporosis. However, the hip bone density seems fine.

My hematologist explained that because of my short lived RBCs, more of my bone was acting as bone marrow producing more blood cells - as a result, my bone density has become low. He has prescribed Fosamax (Alendronate) 70mg to be taken once a week.

I did an online search and found a lot of articles talking about the long list of side effects of this drug and the potential links to esophageal cancer. I am very skeptical about starting this drug!! Also, I am planning for a baby sometime soon. I don't want to start this drug only to get pregnant and have to stop it. Also, not sure how long the drug will stay in my system....is it safe to take it right now if I plan to get pregnant soon?

I did not expect the osteoporosis - that's a huge disapointment - especially since I have been a very active person most of my life - I play tennis, badminton and also work out at the gym.

Should I wait to treat the osteoporosis until after the baby, etc....I don't know what to do! I am kind of on a timeline with the baby plan as well since I am nearing 31....

Any sugesstions/comments other experiences are appreciated!

Thanks,
-Sayli

Hi Sayli,

Have you had your vitamin D level checked? This is essential when talking about bones. If deficient, this should be addressed before any bone meds are taken.

I am deficient in vitamin D. My report from 3 weeks ago shows 16 where the reference range is 30 - 100 ng/mL.
This hematologist had already recommended prescription vitamin D (50,000 IU once a week for 4 weeks). I have taken 3 of these and have one more to go. After this gets over, I will be continuing with over the counter vitamin D.

They also checked my thyroid function which was normal. Iron levels, vitamin B12 and folate are all normal :

Ferritin = 14.7 ng/mL  ref range (10 - 300)
Vit B12 = 500 pg/mL  ref range (239 - 931)
Folate = 16.4 ng/mL   ref range (2.76 - 20)

My CBC results are as below, consistent with beta thal:
HGB = 9.8 g/dL
HCT = 31.4
MCV = 61.8fL
MCH = 19.3 pG
MCHC = 31.2 g/dL
RDW = 16.3 %
MPV = 11.5 fL

I am a 30 yr old beta thal minor woman - I recently began seeing a hematologist who ordered several tests including a bone density scan. The scan was done at 2 places - spine and hip. My spinal bone density came out to be very low - diagnosed as Severe osteoporosis. However, the hip bone density seems fine.

My hematologist explained that because of my short lived RBCs, more of my bone was acting as bone marrow producing more blood cells - as a result, my bone density has become low. He has prescribed Fosamax (Alendronate) 70mg to be taken once a week.

I did an online search and found a lot of articles talking about the long list of side effects of this drug and the potential links to esophageal cancer. I am very skeptical about starting this drug!! Also, I am planning for a baby sometime soon. I don't want to start this drug only to get pregnant and have to stop it. Also, not sure how long the drug will stay in my system....is it safe to take it right now if I plan to get pregnant soon?

I did not expect the osteoporosis - that's a huge disapointment - especially since I have been a very active person most of my life - I play tennis, badminton and also work out at the gym.

Should I wait to treat the osteoporosis until after the baby, etc....I don't know what to do! I am kind of on a timeline with the baby plan as well since I am nearing 31....

Any sugesstions/comments other experiences are appreciated!

Thanks,
-Sayli

Hi Sayli,

Welcome to Thalpal. I was and am at exact stage of life where you are now. However, I'm thal major. In 2009, April 16, I suddenly in the morning, got unbearable pain started in my left leg at first on the left side near the hip joint and it was so unbearable that I couldn't even walk and even pain killers weren't working. Many won't believe but I would have preferred dying at that time and I was literally asking for that as the pain was very very severe. On the contrary on the previous day, i.e. 15th April, I had no signs of it at all, the pain suddenly started on 16th morning itself.

Then after some time, I again met my endocrinologist who also manages my diabetes and she advised me to get Vitamin D levels and Bone Density/Dexa scan done. And she was correct. my Vitamin D levels were 9.62 (very low) and I was immediately advised to start dose of Vitamin D. Then Dexa scan also revealed same as you, low bone mass and as a consequence I was diagnosed as Osteoporosis too.

I am advised Risophose (which contains Risedronate 35mg once a week - unsure how Alendronate differs from it, perhaps try asking your doc about Risedronate content as well?) and taking it since August 2009 till today. However I haven't seen my endo since long and didn't ask whether I should continue or not but I think I'll get Dexa done again to see if I am required to take it still, my bones are weak a little though - if I fall suddenly - they pain very bad.

As a matter of fact, I was also a well playing badminton player and went into tournaments from my school. We have much more in common, hehe.

Anyways, treating Osteo is very important.

And oh, I recently ordered Osteocare tablets (by Vitabiotics) which you can take as well:

http://www.thalassemiapatientsandfriends.com/index.php/topic,4586.0.html

Don't worry, they don't contain any osteoporosis related content. They just have good amount of Vitamin D, Calcium and Magnesium and other small elements together which will help a lot to you for building stronger bones and maintaining good health, especially if you're planning to get pregnant, I very much advise this product. When I was searching for it's reviews, many pregnant mother recommended it as A1 product and that it helped them a lot in maintaining healthy bones and good bone mass during their pregnancy and that they still continue it. And having good levels of those will automatically prevent or help elevate osteoporosis.

You can try it. Those tablets might be available locally where you stay as well.

-P.

I did not expect the osteoporosis - that's a huge disapointment - especially since I have been a very active person most of my life - I play tennis, badminton and also work out at the gym.

Every exercise, workout should be backed by some good diet e.g. milk, fruit juice, banana etc.
When exercise is done body looses some energy , minerals etc so it become quiet important to restore such energy by some food after exercise . Even it can be taken in a qty which can not hurt you while playing.
It is important to maintain the metabolism of body.
Hope it help

Sayli,

Because you do have a vitamin D deficiency, it would be advised to correct this before taking bone drugs. Your level should be at least 35. I would suggest combining the D with a calcium/magnesium supplement (never take calcium without magnesium). I would suggest 1000-1500 mg calcium daily along with 500-750 mg magnesium daily. These minerals are not well absorbed when D is deficient and this may be a contributor to the bone thinning (if this diagnosis is correct). Chronically low Hb can also be an indirect cause, as the bone marrow can expand in an attempt to produce more red blood cells, and this will also cause the bones to become thinner.
Because bone drugs do have serious side effects on many people, it is preferrable to try alternatives before proceeding with the drugs.

Sayli,

Because you do have a vitamin D deficiency, it would be advised to correct this before taking bone drugs. Your level should be at least 35. I would suggest combining the D with a calcium/magnesium supplement (never take calcium without magnesium). I would suggest 1000-1500 mg calcium daily along with 500-750 mg magnesium daily. These minerals are not well absorbed when D is deficient and this may be a contributor to the bone thinning (if this diagnosis is correct). Chronically low Hb can also be an indirect cause, as the bone marrow can expand in an attempt to produce more red blood cells, and this will also cause the bones to become thinner.
Because bone drugs do have serious side effects on many people, it is preferrable to try alternatives before proceeding with the drugs.

Isn't 1500mg calcium high? RDA is about 800mg.

Not at all. Especially for someone battling osteo disease. By the way, my wife takes that dose daily. And keep in mind that adult women generally need higher amounts of these minerals.

Not at all. Especially for someone battling osteo disease. By the way, my wife takes that dose daily. And keep in mind that adult women generally need higher amounts of these minerals.

So should Osteocare's dosage (800mg calcium/300mg magnesium/10 mg Zinc) should suffice me or I shall consider taking higher dose also considering I too have Osteoporosis.

By the way, I got my tests done today again as my transfusion is due tomorrow and I had done serum calcium to see how much calcium I have and the levels are 8.5 (normal range is 8.5-11). But let me ask, in calcium, that 2.5 difference between 8.5 and 11 is also big right? I mean taking tons of doses even doesn't rise that 2.5 difference easily? Because I see my bones are still very weak as compared to before when I didn't had any osteoporosis.

I'm hoping though that pretty soon as I've now switched over to Osteocare and having 300mg more calcium than before and also higher magnesium may help me recover quickly!

As a side note, I got my Hepatitis B done today also and it's Negative. :D 

-P.

Pratik,

It's difficult to maintain a good calcium balance as a thal because of the affects of iron on the glands. Vitamin D is key. Being in a normal range is a real positive.

You can take a higher dose of cal/mag, but keep your weight in mind when you choose a dose. Osteocare is nice because it includes the trace minerals, also needed by majors. Since a normal dose is two tabs, you could raise your dose to three tabs daily, if you can tolerate it well.

Pratik,

It's difficult to maintain a good calcium balance as a thal because of the affects of iron on the glands. Vitamin D is key. Being in a normal range is a real positive.

You can take a higher dose of cal/mag, but keep your weight in mind when you choose a dose. Osteocare is nice because it includes the trace minerals, also needed by majors. Since a normal dose is two tabs, you could raise your dose to three tabs daily, if you can tolerate it well.

I guess I should stay on 2 tabs/day and see for now My weight is 43 kgs if that helps. Osteocare is really nice except the swallowing problems I face, it just literally got stuck a couple of minutes ago when I was swallowing it. I've heard that same by many others that just the swallowing part is hard because it has almost no coating that immediately after going into the mouth it feels like as if we're swallowing a hard rock.

I'll write to Vitabiotics and ask if they can consider including more gelatin type of coating in future so they get swallowed easily but there are very little hopes.

Yes Pratik, I am trying to base the advice I give on what is typical and that varies with thal minor and major. Since most majors tend to be shorter and lighter in weight, I advise that supplements be adjusted for amount depending on the weight of the individual. What you can tolerate comfortably has to be a consideration.

By the way, I got my tests done today again as my transfusion is due tomorrow and I had done serum calcium to see how much calcium I have and the levels are 8.5 (normal range is 8.5-11). But let me ask, in calcium, that 2.5 difference between 8.5 and 11 is also big right? I mean taking tons of doses even doesn't rise that 2.5 difference easily? Because I see my bones are still very weak as compared to before when I didn't had any osteoporosis.
-P.

My S.Calcium level is also at 8.5.
But do you know abt it that Ionised Calcium level is imp that S.Cal level?

@Andybro,
I am taking TAB. TAYO(CAL. CARBONATE 500MG+Cholecelciferol 1000 IU) once daily.
It don't contain Zinc. Before that i was taking Gemitrol (Calcium Carbonate 500mg+0.25mcg Calcitriol+ 7.5mg Zinc)
So i want to ask which is better between these two?

My S.Calcium level is also at 8.5.
But do you know abt it that Ionised Calcium level is imp that S.Cal level?

Certainly not sure about that.

I would say that the supplement that includes zinc is more suitable for thals.