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low bone density...

douglasmich

Senior Member
Messages
311
In my 20s and my dexa scan showed osteopeonia in October last year. Now im getting bone pain in my legs.

All my health problems started with finasteride then gradually got worse. Now i have some sort of CFS/psedo-elhers danlos syndrome. I read MCAD can cause connective tissue problems so i might have that. I have severe connective tissue weakness all over which has disabled me due to joint instability.

Im taking 5000iu vit d, egg shells, cod liver oil and k2 mk7

Is there anything else i can do? Is k2 mk4 better?

Thanks
 

Little Bluestem

All Good Things Must Come to an End
Messages
4,930
I also have osteopeonia. My physician recommended OsteoPrev from Orthomolecular Products. It contains k2 mk7, but I think that is because that is what is usually used in the U.S. It doesn't necessarily mean that it is better.
 

prioris

Senior Member
Messages
622
I have spent a lot of time researching bone related supplements. The best bone builder supplement out there is Jarrow's Ultra Bone Up. It brings together the latest research. Split the dose with each meal to absorb more calcium into the bones. This should not only make your bones more denser but make them more fracture proof. I would also get some extra orthosilicic acid like JarrowSil. Orthosilicic acid is what makes bones more fracture proof so very important.

Do not take the supplement with meals that are primarily made up of nuts, seeds and grains since they bind to minerals in digestive tract and you will excrete them out. Eat phytates separately unless small part of larger meal. Phytates in one meal won't effect the next meal. White rice and white flour are devoid of phytates so should be no problem.
 

prioris

Senior Member
Messages
622
K2 MK4 is wesson price active X ingredient to build the teeth. K2 MK7 is used on the bones. I take the nutricology brand vitamin K complex for K2 MK4. Body will excrete any vitamin K it doesn't use. It also has some D3. I also take 1/2 tsp Green Pasture's Cinnamon non capsule Butter Oil/FCLO also for teeth. It has fat soluble A and D.

I don't take Jarrow Ultra Bone up with the BO/FCLO because I find it can cause too much calcium to enter cells hence cause CNS problems so will only take it with food. You have to experiment with it to find out what is best for you.

>5000iu vit d, egg shells, cod liver oil and k2 mk7
The ingredients you are taking are not going to cut it. you need the cofactors. ditch all these supplements and just get jarrow supplement. It makes life simpler.

It is important to realize cod liver oil can be toxic. It generally has a 10 to 1 ratio of fat soluble A to D. Green Pasture is 5 (4500 IU in 1/2 tsp) to 1 (900 IU in 1/2 tsp). You need to watch out for Vitamin A toxicity. Taking it on a long term basis can cause problems. There is a debate about this.

I go with the folks who think fat soluble vitamins are important but also I am careful about not taking too much so take a more middle ground. Norwegian Cod Liver Oil is considered the next best thing after green pasture but that is still 10 to 1 ratio. The human body supposeldy stores 600,000 IU of vitamin A. Some people may use up their vitamin A every day so will not become toxic. Other people may use less so be more sensitive. You need to play it by ear and see what is right for you. If one becomes toxic because of it, just stop taking it and any other vitamin A supplement then the problem should go away within month or so.
 
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Jonathan Edwards

"Gibberish"
Messages
5,256
In my 20s and my dexa scan showed osteopeonia in October last year. Now im getting bone pain in my legs.

All my health problems started with finasteride then gradually got worse. Now i have some sort of CFS/psedo-elhers danlos syndrome. I read MCAD can cause connective tissue problems so i might have that. I have severe connective tissue weakness all over which has disabled me due to joint instability.

Im taking 5000iu vit d, egg shells, cod liver oil and k2 mk7

Is there anything else i can do? Is k2 mk4 better?

Thanks

You are asking for medical advice and I think you should get that from a physician. Osteopenia on dexa just means low calcium content. You need to know if you are osteomalacic or just of low bone density. You need to take the right amount of vitamin D and not too much - vitamin D toxicity with calcinosis is a real problem with high doses over a long period. Over the counter supplements are likely to be useless. I would get a decent medical opinion.
 

prioris

Senior Member
Messages
622
I currently have some connective tissue problems that are related to the tendons. I just added glucosamine sulfate / chondroitin sulfate yesterday.

The more vitamin D3 one has in blood, the more calcium that will get into the blood. This can be NOT a good thing. So I am careful about taking too much D3 also. Taking too much D3 with calcium can be a bad mix. One needs enough but not too much. I have taken large doses 10K UI of D3 for many months with no problem probably because the calcium supplement I was using was low quality. With a high quality calcium supplement like MCHC, one needs to tread very careful.
 
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Jenny

Senior Member
Messages
1,388
Location
Dorset
You are asking for medical advice and I think you should get that from a physician. Osteopenia on dexa just means low calcium content. You need to know if you are osteomalacic or just of low bone density. You need to take the right amount of vitamin D and not too much - vitamin D toxicity with calcinosis is a real problem with high doses over a long period. Over the counter supplements are likely to be useless. I would get a decent medical opinion.

I had thought I had got a decent medical opinion on this but from what you say it seems I haven't.

I had a dexa that I was told showed osteopenia. No one has told me whether I have osteomalacia (what is this?) or low bone density. My D3 level was low so I was told by my GP to take 2000iu of D3 a day. He said that he was not allowed to issue a prescription for this - I had to buy it over the counter.

How does he or I know if this is the right amount of D3? If this over the counter supplement is useless what should I be taking? If my GP is giving me bad advice should I be seeing a specialist?

I suspect I may have low bone density because I was bedridden and housebound for several long periods during my 33 years of ME, and it seems likely to become an issue for many of us.
 

Sushi

Moderation Resource Albuquerque
Messages
19,934
Location
Albuquerque
How does he or I know if this is the right amount of D3?
Since a number of factors influence what you body will do with a D3 supplement, I'd think your doctor would want to follow up with testing to see how the 2000 IU daily translates into Vit D 25 and Vit D 1,25. I'd guess he is shooting for optimal ranges.
 

prioris

Senior Member
Messages
622
Vitamin D3 is the correct D form. There is a test for vitamin D levels. The vitamin D area is still murky for me. There is a lot of different opinions on what level is good and how much one should take. If one is taking it with calcium, I wouldn't go over 5000 IU per day especially using calcium. I don't think a doctor can truly answer that but just guess. Try to use your intuition to find the answer.

I think the average person who is over 50 years old should be taking a good bone builder supplement like I mentioned. If older people could see their bones, many people would go YIKES!!!. It would look mottled. Being young shows you have degeneration going on due to disease. Since the skin covers it, we don't see it.

I think the bone problem is epidemic in the older population whether they appear healthy or not. Chronic illness could add to the problem. Bone loss is just part of aging.
 
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Jenny

Senior Member
Messages
1,388
Location
Dorset
Since a number of factors influence what you body will do with a D3 supplement, I'd think your doctor would want to follow up with testing to see how the 2000 IU daily translates into Vit D 25 and Vit D 1,25. I'd guess he is shooting for optimal ranges.

They only test for one type of D. Not sure which. No chance of getting any other test. Follow up after 6 months showed slight increase and I'm still on the same dose.
 

Sushi

Moderation Resource Albuquerque
Messages
19,934
Location
Albuquerque
They only test for one type of D. Not sure which.
They will be testing for 25-hydroxy vitamin D. This is the common test. The Vit D 1,25 is often available if you agree to pay for it. I believe that the kidneys change 25-hydroxy vitamin D into an active form of Vit D--or Vit D 1,25. High levels of 1,25 can be associated with a rise in calcium--hence the caution about taking really high levels of D3.
 

Jonathan Edwards

"Gibberish"
Messages
5,256
I had thought I had got a decent medical opinion on this but from what you say it seems I haven't.

I had a dexa that I was told showed osteopenia. No one has told me whether I have osteomalacia (what is this?) or low bone density. My D3 level was low so I was told by my GP to take 2000iu of D3 a day. He said that he was not allowed to issue a prescription for this - I had to buy it over the counter.

How does he or I know if this is the right amount of D3? If this over the counter supplement is useless what should I be taking? If my GP is giving me bad advice should I be seeing a specialist?

I suspect I may have low bone density because I was bedridden and housebound for several long periods during my 33 years of ME, and it seems likely to become an issue for many of us.

Your doctor may be covering the options correctly, I cannot know without more details. If there is a component of osteomalacia then vitamin D is the right treatment anyway (it may not be ideal if the osteopenia is 'porosis'). The dose suggested is not going to give you toxicity and by over the counter I was really thinking of other 'magic mixtures' rather than just straight D3. What may be sensible, as others have suggested, is some sort of check that you are getting enough vit D.
 

Hip

Senior Member
Messages
17,799
All my health problems started with finasteride then gradually got worse.

If finasteride triggered all your symptoms, then presumably you have post-finasteride syndrome (PFS).

These are the symptoms of PFS:

PFS Symptoms: Physical
Gynecomastia
  • Female-like breast development and enlargement
Fatigue
  • Chronic fatigue, listlessness
Muscle
  • Muscle atrophy, weakness
  • Muscle twitching
Skin
  • Decreased oil and sebum production
  • Chronically dry, thinning of skin
  • Melasma (brownish macules and patches that typically affect sun-exposed areas on the face)
Hearing
  • Tinnitus (ringing in the ears)
Metabolism
  • Increased fat deposition, obesity and elevated body mass index
  • Decrease in body temperature
  • Reduced HDL cholesterol, raised fasting glucose and triglycerides
Self-Harm
  • Attempted suicide
  • Suicide

PFS Symptoms: Mental
Memory
  • Severe memory/recall impairment
Cognition
  • Slowed thought processes
  • Impaired problem solving, decreased comprehension
Psychological
  • Depression
  • Anxiety
  • Suicidal ideation
Emotional
  • Emotional flatness and anhedonia
Sleep
  • Insomnia




You may be interested to know that @mariovitali said he cured his PFS using the supplements detailed in this post. I will copy these supplements here:
-Methylation Protocol (If you have Methylation problems you must follow it according to your Gene mutations)

-TUDCA (tauroursodeoxycholic acid): ameliorates Misfolded Proteins/ER Stress

-Taurine : Ameliorates ER Stress

-Vitamin C : Boosts BH4 functionality in case you have impaired production. I have reduced Tetrahydrobiopterin production therefore i use Vitamin C to increase it. Phenylketonuria creates Endoplasmic Reticulum Stress and Unfolded Protein Response

-Selenium : Deficiency/Over-supplementation increases ER Stress. Induces HSP70, Prevents Protein Misfolding. Note that P5P (=Active form of Vitamin B6, Part of Methylation support regimen) is essential for proper Selenium metabolism.

-Curcumin: Ameliorates ER Stress by boosting HSP70 (Heat Shock Protein). NOTE : High Curcumin intake (=In Supplement form) acts as a DHT Inhibitor.

-Vitamin D3 : Ameliorates ER Stress, Induces HSP70 but it can be problematic to some people because it increases Calcium Absorption which could cause Symptoms if your Calcium Homeostasis is impaired.

-Resveratrol : Induces HSP70. Note that many Resveratrol supplements contain Vitis Vinifera extract which is a potent HmG-CoA Inhibitor (Statin drugs are also HmG-CoA Inhibitors).

-N-Acetylglucosamine (NAG) : Could play a role in controlling ER Stress. DO NOT take NAG and sweets or anything else that increases Glucose levels at the same time.


Note : Foods high in Cholesterol and Glucose increase HmG-CoA activity which is beneficial for us but it is not suggested that you increase HmG-CoA by having Foods high in Cholesterol and Sugar!

-Caloric Restriction (But don't go overboard) : Induces HSP70. Note however that severe drop of Insulin Level (Hypoglycemia) stops HmG-CoA production which for us could be a problem. Probably a good practice is to not eat anything for a day apart from drinking water. Check with your doctor that this is ok for you to do.

-Calcium : Ensure that you have normal calcium levels. Calcium is VERY critical for proper handling of Endoplasmic Reticulum Stress but it can be a double-edged sword if Calcium homeostasis is not functioning properly. In this case, supplementing with Calcium will worsen your symptoms. It is recommended that you first supplement with Magnesium (Calcium Antagonist) and see how you feel.

Apparently these supplements boost heat shock protein 70 (HSP70), which then reduces endoplasmic reticulum stress, and this the mechanism by which @mariovitali believes he cured his PFS.

Mario had post-finasteride syndrome for 7 years; he took heat shock protein 70 boosters to reduce endoplasmic reticulum stress, and within 2 months he was in full remission.

I think TUDCA is one of the most important supplements in the list, as Mario said in this post that:
Unfortunately i crashed really badly because i stopped TUDCA 5 days ago and minimised Alpha GPC intake. I got very depressed ( i would say severely)...i also got Brain Fog and lost my Libido.

Though I don't know if any other patient suffering from PFS has tried this protocol.
 
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barbc56

Senior Member
Messages
3,657
@douglasmich

Please see a specialist. I have a bone metabolic disorder that has given mt osteopenia and frequent kidney stones as well as other problems. I didn't have symptoms until two years ago . It's inherited and can develope at any age. I see an endocrinologist who specializes in bone metabolic disorders.

I mention this as a big component is the way you absorb Vitamin D. I'm not saying you have this, I'm not a doctor, but to make the point that treatment, as with a lot of disorders can be tricky as you have to get the right balance of medications or any supplements along with other treatments. Symptons can also mimic other health conditions.

Advice and diagnosis from a forum is not the way to go as you may get misinformation from others who are well meaning but the treatment may or may not not apply to you. What "cures', if it is indeed a cure as there could be other factors , for one person may be harmful for another. Even with the same diagnosis. It's taking a big risk that may do more harm than good

Is it possible to get a referral? A second opinion? There are other specialist who are experts with osteopenia along with related disorders. But again talk to your doctor as you may need a different type of specialist.

Good luck!
 
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douglasmich

Senior Member
Messages
311
Hip yes i have PFS. But i am worse then pfs guys as i got some condition on top.

Low bone density in itself is from PFS due to low androgen cellular activity, theorized to be epigenetic AR gene silencing causing psedo androgen insensitivity
 

prioris

Senior Member
Messages
622
Hip yes i have PFS. But i am worse then pfs guys as i got some condition on top.

Low bone density in itself is from PFS due to low androgen cellular activity, theorized to be epigenetic AR gene silencing causing psedo androgen insensitivity

that's like saying I live near Lake Chargoggagoggmanchauggagoggchaubunagungamaugg. ... LOL
 

Violeta

Senior Member
Messages
2,843
Maybe check boron (borax) for the bone density problem if the D isn't working out. It might help with hormone issues, too. Some guys at immortal hair have good links about it, saves time in researching.