D deficiency??? HELP
Im usually just a lurker on this site but I am very frustrated and need some advise on what to do. I had gastrc bypass 71/2 years ago. I have Iron infusions about once a year. b 12 shots monthly until about 4 months ago when my dr said there was a shortage and stopped giving them to me. I take a sublinguil b12 calcium, multi and a d daily. well... starting about 6 months ago and getting gradually worse to almost debilitating Ive been not feeling good (bone and muscle pain,muscle fatigue,general fatigue, depression, anxiety, irregular heartbeat,short term memory loss, dropping everything, off balance, Hungry all the time (i dont eat ANY sugar and I go easy on the carbs because i dump easy) Had bloodwork done. This past summer i had a bone scan that said that my bones were thinning.
These are the tests that seemed off to me. There were other tests done that fell into the "normal" range.
Vitamin D total 28 (normal 30-100)
Alkaline Phosphates 131 (normal 33-115)
B12 308 (normal 200-1100)
Parathyroid hormone 82 (normal 10-65)
Now my drs advise "Just keep on taking your vitamins like you are and we can retest in 6 months"
I was very upset, this is not normal. I told the nurse that i wanted another apointment with the dr this week. My first impulse is to see another doctor. What do i say, am i wrong, im so frustrated, what is normal, do these test results sound like something that i should let go for 6 more months.
These are the tests that seemed off to me. There were other tests done that fell into the "normal" range.
Vitamin D total 28 (normal 30-100)
Alkaline Phosphates 131 (normal 33-115)
B12 308 (normal 200-1100)
Parathyroid hormone 82 (normal 10-65)
Now my drs advise "Just keep on taking your vitamins like you are and we can retest in 6 months"
I was very upset, this is not normal. I told the nurse that i wanted another apointment with the dr this week. My first impulse is to see another doctor. What do i say, am i wrong, im so frustrated, what is normal, do these test results sound like something that i should let go for 6 more months.
No, you should NOT let them go another 6 months. These results show some dangerous problems.
If your vitamin D is below 80, you don't absorb calcium well. Says the Linus Pauling Institute.
When your PTH is high, and yours is VERY high, it suggests you are leaching calcium out of your bones. Your body does that when you haven't been absorbing enough calcium, because the calcium level in your blood needs to stay good or your heart won't beat properly and you can die.
Have you had a bone density scan lately? You need one. And you need to get that D level up. How much D have you been taking?
As far as your B12, below 400 you can get PERMANENT nerve damage in your hands and feet. Got numbness and tingling in hands and feet yet? Are you tired? Depressed? That happens below 550. Ideally your B12 would be around 1000.
What dose sublingual do you take daily?
If your vitamin D is below 80, you don't absorb calcium well. Says the Linus Pauling Institute.
When your PTH is high, and yours is VERY high, it suggests you are leaching calcium out of your bones. Your body does that when you haven't been absorbing enough calcium, because the calcium level in your blood needs to stay good or your heart won't beat properly and you can die.
Have you had a bone density scan lately? You need one. And you need to get that D level up. How much D have you been taking?
As far as your B12, below 400 you can get PERMANENT nerve damage in your hands and feet. Got numbness and tingling in hands and feet yet? Are you tired? Depressed? That happens below 550. Ideally your B12 would be around 1000.
What dose sublingual do you take daily?
Kelly
Please note: I AM NOT A DOCTOR. If you want medical advice, talk to your doctor. Whatever I post, there is probably some surgeon or other health care provider somewhere that disagrees with me. If you want to know what your surgeon thinks, then ask him or her. Check out my blog.
I had a bone scan this past summer. It showed that I had thinning in my bones. talked her into a Yes, tired, depressed, tingling the worse is the muscle cramping especially at night.....I feel like crap. Im changing my primary doctor today. B12 sublingual is 1000. vit d, i have some in my multi, some in my calcium and an extra d by itself (im at work and dont know off the top of my head) Im going to do an extra b12 at the end of the day and get the 50000 d to take once a week from vitalady, also up my calcium. im very frustrated. originally I had lost 185 lbs from the surgury. Ive gained 60 lbs back over the last year and a half. Im Always hungry. Im going to make another apointment within the next few weeks with my new dr. dont know what else to do. Thank you!
Personally, I would take the 50,000 IU D3 more than once a wee****il you get your level up. I take it three to four times a week just to maintain my level over 80.
And for the B12, to get that up, you could take it twice a day. B12 is a water soluble vitamin so if you take more than you need, you should just pee out the extra. But right now you need a lot because that nerve damage can be permanent.
And for the B12, to get that up, you could take it twice a day. B12 is a water soluble vitamin so if you take more than you need, you should just pee out the extra. But right now you need a lot because that nerve damage can be permanent.
Kelly
Please note: I AM NOT A DOCTOR. If you want medical advice, talk to your doctor. Whatever I post, there is probably some surgeon or other health care provider somewhere that disagrees with me. If you want to know what your surgeon thinks, then ask him or her. Check out my blog.
first off, you B12 is dangerously low and can be causing alot of your symptoms. Anything below 500 puts us at risk for nerve damage and if left there long enough, it can become permanent and cognitive problems can also develop. DO you know what your B12 was before? How much are you takingnow? YOu want your level to be up around 1200-1800 and you are dangerously low.
I know there was a shortage but you can get it at the pharmacy in single serve vials since they aren't making the 30cc multi vials at this point. You can get a prescription for the B12 vials and give yourself the injections with an insulin needle. With a level like yours, you need to inject atleast 2 times per week for 1 month and then weekly for another month and rechecked. I can;t believe they told you to keep doing what you are doing. IF you can't get the script for the B12 - you might be able to findi it on the internet somewhere, it is really cheap and you can buy the syringes at Walgreens for $4 for 10 needles.
If not, get some sublinguals, 5000mcg and take them daily for 1 week and then go on 2500mcg daily after that. Stay on that for 2 months (total) and get rechecked - dont' wait 6 months to see what is going on
The high alkaline phosphates is very concerning - it can either be part of a liver panel or be related to bones. Your D is very low and your PTH is too high which is due to the low D. What was your calcium level.? Have you had a DEXA scan? You need one - you should have had a first one at 1 year and then every 2 years after that unless abnormal and then you need them yearly. This checks for osteoporosis or osteopenia. What were your other liver enzymes? ALT and AST?
For vitamin D-how much are you taking and what type? You should be taking dry D3 from vitalady.com 50,000 units atleast 2-3 times per week.
You said you are taking a multi once per day? That should be 2 times per day.
How much calcium do you take? Is it calcium citrate? You need 1500-2000mg of calcium citrate daily in 3-4 daily doses no more than 650mg at a time and not within 2-4 hours of your iron or synthroid.
You should also be taking iron with vitamin C - vitalady.com sells tender irons with 60mg per capsule iwth the necessary vitamin C in them. It is hard to say how much you need with out an iron or ferritin level but I tend to think with your other levels and the fact that you aren't taking any, it is very low. My NUT starts all patients on 150mg per day, which is 3 capsules at a time - making 180mg. Do you know your iron or ferritin? I would probably recommend taking 2 for 120mg at first but you probaly need more -many need up to 5 per day. This can't be taken within 2-4 hours of your calcium or thyroid. iron deficiency can cause heart palpitations, severe fatigue, dizziness and bone pain.
You should also be taking vitamin B1 - 100mg daily is the normal but if you are low, you need more - vitamin B1 deficiency also causes nerve damage and alot of your symptoms. This is very serious - you need this level ASAP
You also need a vitamin A level ASAP -this can affect your vision
You also need to get your TSH, T3 and T3 levels tested to make sure your thyroid is doing okay
You said you had a bone scan - are you talking about a DEXA scan or an actual bone scan? Bone scans look for broken bones, cancer in the bones, infections. A DEXA scan is what shows how your bones are doing = thinning? Osteoporosis, osteopenia? If that is the case, you need to see an Endocrinologist that specializes in osteoporosis or osteopenia to see if you need treatment. Make sure you are taking the above calcium or D because that is part of what causes the thinning bones is not having enough
there are lots of other labs you need to have done - I don't know if you had more done than you listed, if so, plesae PM me and I will be glad to go over them with you
I know there was a shortage but you can get it at the pharmacy in single serve vials since they aren't making the 30cc multi vials at this point. You can get a prescription for the B12 vials and give yourself the injections with an insulin needle. With a level like yours, you need to inject atleast 2 times per week for 1 month and then weekly for another month and rechecked. I can;t believe they told you to keep doing what you are doing. IF you can't get the script for the B12 - you might be able to findi it on the internet somewhere, it is really cheap and you can buy the syringes at Walgreens for $4 for 10 needles.
If not, get some sublinguals, 5000mcg and take them daily for 1 week and then go on 2500mcg daily after that. Stay on that for 2 months (total) and get rechecked - dont' wait 6 months to see what is going on
The high alkaline phosphates is very concerning - it can either be part of a liver panel or be related to bones. Your D is very low and your PTH is too high which is due to the low D. What was your calcium level.? Have you had a DEXA scan? You need one - you should have had a first one at 1 year and then every 2 years after that unless abnormal and then you need them yearly. This checks for osteoporosis or osteopenia. What were your other liver enzymes? ALT and AST?
For vitamin D-how much are you taking and what type? You should be taking dry D3 from vitalady.com 50,000 units atleast 2-3 times per week.
You said you are taking a multi once per day? That should be 2 times per day.
How much calcium do you take? Is it calcium citrate? You need 1500-2000mg of calcium citrate daily in 3-4 daily doses no more than 650mg at a time and not within 2-4 hours of your iron or synthroid.
You should also be taking iron with vitamin C - vitalady.com sells tender irons with 60mg per capsule iwth the necessary vitamin C in them. It is hard to say how much you need with out an iron or ferritin level but I tend to think with your other levels and the fact that you aren't taking any, it is very low. My NUT starts all patients on 150mg per day, which is 3 capsules at a time - making 180mg. Do you know your iron or ferritin? I would probably recommend taking 2 for 120mg at first but you probaly need more -many need up to 5 per day. This can't be taken within 2-4 hours of your calcium or thyroid. iron deficiency can cause heart palpitations, severe fatigue, dizziness and bone pain.
You should also be taking vitamin B1 - 100mg daily is the normal but if you are low, you need more - vitamin B1 deficiency also causes nerve damage and alot of your symptoms. This is very serious - you need this level ASAP
You also need a vitamin A level ASAP -this can affect your vision
You also need to get your TSH, T3 and T3 levels tested to make sure your thyroid is doing okay
You said you had a bone scan - are you talking about a DEXA scan or an actual bone scan? Bone scans look for broken bones, cancer in the bones, infections. A DEXA scan is what shows how your bones are doing = thinning? Osteoporosis, osteopenia? If that is the case, you need to see an Endocrinologist that specializes in osteoporosis or osteopenia to see if you need treatment. Make sure you are taking the above calcium or D because that is part of what causes the thinning bones is not having enough
there are lots of other labs you need to have done - I don't know if you had more done than you listed, if so, plesae PM me and I will be glad to go over them with you
I have changed my primary doctor and am going to see my new doctor in a few weeks, I hope this one has a brain :)
My total iron is 82 and my ferretin is 56
I see a hemotologist a few times a year and usually get infusions once a year. He told me to stop the iron because it wasnt working but i take it in my multi. I was taking alot before then.
My TSH is 2.62 and says consistent with euthyroid patient, (dont know what that means)
I had a bone scan this past summer and I do have osteopenia.
my b12 before this one was 356
and last years d was 25
Ive upped my vitamins and am now taking 4500 of d3 dry split up during the day
1600 of calcium citrate split up
1 multi w/ iron
4000 of sublinguil b12
I cant see my surgeon because of hmo insurance stuff and hes not covered.
I still feel like crap
My total iron is 82 and my ferretin is 56
I see a hemotologist a few times a year and usually get infusions once a year. He told me to stop the iron because it wasnt working but i take it in my multi. I was taking alot before then.
My TSH is 2.62 and says consistent with euthyroid patient, (dont know what that means)
I had a bone scan this past summer and I do have osteopenia.
my b12 before this one was 356
and last years d was 25
Ive upped my vitamins and am now taking 4500 of d3 dry split up during the day
1600 of calcium citrate split up
1 multi w/ iron
4000 of sublinguil b12
I cant see my surgeon because of hmo insurance stuff and hes not covered.
I still feel like crap
First off, hematologists are great with most people in treating iron but unfortunately many aren't that familiar with WLS. I see one myself and I have to explain to him what we can absorb and what we can't. They also go by the basic ranges for our vitamins where we need optimal levels and many don't understand that.
A multi with iron isn't a good idea - the iron in it is useless to us. It is ferrous sulfate (almost always) which we can't absorb and they also have calcium in them - again the wrong type and if the iron and calcium are together, they cancel each other out. If you check out bariatric advantage or celebrate.com's multi's - none of them have iron in them. You are best off with something like Centrum silver and take it twice per day - I know the chewables have the necessary Selenium but not sure about the tablets. You also MUST take them 2 times per day or you will get deficiencies in many of the basic vitamins and minerals - like vitamin A, B1, selenium, zinc, copper to name a few common ones.
The Dry D3 - can all be taken in one dose and should be taken with your calcium. What brand of calcium citrate are you taking and how much at one time? How much is in each pill? With a low vitamin D like you have along with having Osteopenia, 4500mg a day isn't nearly enough. You need atleast 10,000 to 15,000 units per day to get your level up and that can dramatically increase your energy level
4,000 units of sublingual B12 is good but make sure you get your level rechecked when you see your PCP in a few weeks to make sure it is working
How much iron were you taking before the infusions that didn't work? The problem with only getting infusions and not supplementing is that you get your level to a good point - presumably - only getting 1 infusion many times isn't enough for people unless it is really high dose, some get a smaller dose once per week for 5 weeks and then end up with optimal iron levels and a great ferritin. But if you don't take any oral iron, your level will go down pretty quickly and end up deficient again need another IV - the problem with this is that you end up feeling like crap in the middle - you start out great but then drop - if you can take oral iron - you may need really high dose, you wont crash and have a constant up and down cycling - it keeps your iron levels at an even level. Some people need to take up to 5 or 6 of the tender irons - 60mg each with the necessary vitamin C from vitalady.com - this is 300-360mg all at one time and some need to take that plus heme - 2-3 at a time but for them to work properly, you need to break them in half and they are taken with calcium, so separate from the tenders since they can't be taken with calcium. I know this is alot but it can prevent future infusions in many. You might not need all that, this is just the maximum dose I have seen some people need, I personally take 3-4 of the tenders with no problems.
Many years ago, preop I had a problem with malabsorbtion and ended up needing IV infusions. I was allergic and it was bad but had to have it, so I would be hospitalized and monitored and given high dose steroids, benedryl and breathing treatments for a few days each time. I couldnt' absorb oral iron or so I thought - we didnt' know about carbonyl iron or heme, I was taking ferrous sulfate and at one point took a prescription with Polysaccharide Iron with C, Folic Acid and B12 - this is a good combination but there wsan't enough of each to do anything.
You also need to add vitamin B1 - this is imperative for all but especially with your symptoms. You also need to get this checked when you see your PCP because if it is low, the standard 100mg daily won't be enough. The dose for vitamin B1 (thiamine) deficiency is 300mg per day. You want to be at the upper end of the range. I have seen some people with dangerously low levels of B1 and B12, need to be hospitalized due to the nerve damage and cognitive problems to get IV infusions of the B vitamins. It is that serious. Do you get an pins and needles or tingling in your extremities - hands, feet, toes or fingers? This is a sign of nerve damage and need to be treated with massive doses and quickly
A TSH of 2.62 is in the normal range which is what Euthyroid means but you are approaching hypothyroid not far away. The normal range now used by the Endocrine Society is .3 - 3.0, it used to go up to 4.5 or 5.0. This isnt' the case anymore and once you hit 3.0, you are now considered hypothyroid. IF you are already being treated, it is ideal to keep your level around 1.0 or as close to as possible.
If you have Osteopenia and I am not sure how they can diagnose that with a standard nuclear bone scan - you need a DEXA scan with actually levels of a T score and Z score to determine a true diagnosis of osteopenia - depending on how low your T Score is, determines whether you are normal, osteopenia or osteoporosis. Without a DEXA, you can't get these readings or a true diagnosis. Yes, a bone scan can show thinning bones but not the degree. It isnt' used for that purpose. Please ask for a DEXA scan. Are you still getting your periods? That can make a huge difference, once postmenopausal, we loose bone at a much faster rate and treatment is used more readily. Many times if you still get your period, they wont treat osteopenia only osteoporosis.
If you do still get your periods, have you considered stopping them to help with your iron issue? This is done quite often now and is a treatment for iron deficiency. Many years ago like I mentioned above, my hematologist had me see my Gyn for birth control pills or the patch to stop my periods - I used both. The patch worked better on me since I couldnt' absorb the pills properly which is the case with many of us, so the patch went directly into the bloodstream and malabsorbtion didn't matter. You wear them for a week and then change to another one. The way to stop your periods is for you doctor to write a prescription for a patch once per week with no week off at the end of the month to allow for you to get your period. You wear them continually and you wont' get your period. Some get a little breakthrough at the begining until you get enough hormones in your system. they worked great for me, no bleeding - less iron loss. Just a suggestion that might help you
I wish you luck and hope you find a new PCP that is willing to help you- hope you feel better.
If you have any other questions, please feel free to PM me anytime. I can send you a list of all the labs we need = preferably every 3 months
A multi with iron isn't a good idea - the iron in it is useless to us. It is ferrous sulfate (almost always) which we can't absorb and they also have calcium in them - again the wrong type and if the iron and calcium are together, they cancel each other out. If you check out bariatric advantage or celebrate.com's multi's - none of them have iron in them. You are best off with something like Centrum silver and take it twice per day - I know the chewables have the necessary Selenium but not sure about the tablets. You also MUST take them 2 times per day or you will get deficiencies in many of the basic vitamins and minerals - like vitamin A, B1, selenium, zinc, copper to name a few common ones.
The Dry D3 - can all be taken in one dose and should be taken with your calcium. What brand of calcium citrate are you taking and how much at one time? How much is in each pill? With a low vitamin D like you have along with having Osteopenia, 4500mg a day isn't nearly enough. You need atleast 10,000 to 15,000 units per day to get your level up and that can dramatically increase your energy level
4,000 units of sublingual B12 is good but make sure you get your level rechecked when you see your PCP in a few weeks to make sure it is working
How much iron were you taking before the infusions that didn't work? The problem with only getting infusions and not supplementing is that you get your level to a good point - presumably - only getting 1 infusion many times isn't enough for people unless it is really high dose, some get a smaller dose once per week for 5 weeks and then end up with optimal iron levels and a great ferritin. But if you don't take any oral iron, your level will go down pretty quickly and end up deficient again need another IV - the problem with this is that you end up feeling like crap in the middle - you start out great but then drop - if you can take oral iron - you may need really high dose, you wont crash and have a constant up and down cycling - it keeps your iron levels at an even level. Some people need to take up to 5 or 6 of the tender irons - 60mg each with the necessary vitamin C from vitalady.com - this is 300-360mg all at one time and some need to take that plus heme - 2-3 at a time but for them to work properly, you need to break them in half and they are taken with calcium, so separate from the tenders since they can't be taken with calcium. I know this is alot but it can prevent future infusions in many. You might not need all that, this is just the maximum dose I have seen some people need, I personally take 3-4 of the tenders with no problems.
Many years ago, preop I had a problem with malabsorbtion and ended up needing IV infusions. I was allergic and it was bad but had to have it, so I would be hospitalized and monitored and given high dose steroids, benedryl and breathing treatments for a few days each time. I couldnt' absorb oral iron or so I thought - we didnt' know about carbonyl iron or heme, I was taking ferrous sulfate and at one point took a prescription with Polysaccharide Iron with C, Folic Acid and B12 - this is a good combination but there wsan't enough of each to do anything.
You also need to add vitamin B1 - this is imperative for all but especially with your symptoms. You also need to get this checked when you see your PCP because if it is low, the standard 100mg daily won't be enough. The dose for vitamin B1 (thiamine) deficiency is 300mg per day. You want to be at the upper end of the range. I have seen some people with dangerously low levels of B1 and B12, need to be hospitalized due to the nerve damage and cognitive problems to get IV infusions of the B vitamins. It is that serious. Do you get an pins and needles or tingling in your extremities - hands, feet, toes or fingers? This is a sign of nerve damage and need to be treated with massive doses and quickly
A TSH of 2.62 is in the normal range which is what Euthyroid means but you are approaching hypothyroid not far away. The normal range now used by the Endocrine Society is .3 - 3.0, it used to go up to 4.5 or 5.0. This isnt' the case anymore and once you hit 3.0, you are now considered hypothyroid. IF you are already being treated, it is ideal to keep your level around 1.0 or as close to as possible.
If you have Osteopenia and I am not sure how they can diagnose that with a standard nuclear bone scan - you need a DEXA scan with actually levels of a T score and Z score to determine a true diagnosis of osteopenia - depending on how low your T Score is, determines whether you are normal, osteopenia or osteoporosis. Without a DEXA, you can't get these readings or a true diagnosis. Yes, a bone scan can show thinning bones but not the degree. It isnt' used for that purpose. Please ask for a DEXA scan. Are you still getting your periods? That can make a huge difference, once postmenopausal, we loose bone at a much faster rate and treatment is used more readily. Many times if you still get your period, they wont treat osteopenia only osteoporosis.
If you do still get your periods, have you considered stopping them to help with your iron issue? This is done quite often now and is a treatment for iron deficiency. Many years ago like I mentioned above, my hematologist had me see my Gyn for birth control pills or the patch to stop my periods - I used both. The patch worked better on me since I couldnt' absorb the pills properly which is the case with many of us, so the patch went directly into the bloodstream and malabsorbtion didn't matter. You wear them for a week and then change to another one. The way to stop your periods is for you doctor to write a prescription for a patch once per week with no week off at the end of the month to allow for you to get your period. You wear them continually and you wont' get your period. Some get a little breakthrough at the begining until you get enough hormones in your system. they worked great for me, no bleeding - less iron loss. Just a suggestion that might help you
I wish you luck and hope you find a new PCP that is willing to help you- hope you feel better.
If you have any other questions, please feel free to PM me anytime. I can send you a list of all the labs we need = preferably every 3 months
Id pm you but i dont know how. Thank you!!!!!!! Thank you!!!!!!!!!!!!!!for your info. No more periods for a couple years now.I get so afraid of taking too much vitamins. In the beginning I had originally gotten the old iron infusion, dont remember what it was called maybe ferralicit (sp). i ended up in the hospital with an alergic reaction. now i get something different. its about once a year and I go every 3 days for 2 weeks, about 6 times. it was so long ago, i dont remember what kind of iron i was taking. Ive been seeing the hemotoligist for about 5 years.Id love the list of the levels that need testing. Please email me @ [email protected] . I didnt know they did b12 infusions, yes tingling and LOTS of leg and bone pain...........Tired, not sleepy tired just no energy tired
Thanks
Tammy
Thanks
Tammy
I am not home now to send you the list, I will do it later no problem. As far as the tingling that is a sign that nerve damage is starting to set in and a sign that you need massive doses of B12 and quickly before the nerve damage gets worse - it can alsp be the B1
Please do yourself a favor and if you can't get a B12 and quickly, you need more than one - maybe if your PCP wont give you a script for you to do them yourself, you hematologist will - they also specialize in B12 deficiency - it is another type of anemia. In the menatime for one week, you might want to double your B12 sublinguals, I know it sounds like alot but too much can't hurt you, you just pee out the excess but too litlle does major damage.
Also go to a vitamin shoppe or GNC and get some vitamin B1 - 100mg, take 2 ,per day, again you just pee out the excess but not enough is very dangerous.
I took IV infustions iron sucrose and iron dextran - I was severely allergic to both.
If you need to PM someone, click on there name under the picture - then you have to add them as a friend - send a friend request. Once approved, you PM them. My profile is opened to all but dont think you can PM without being a friend. IFyou have trouble with this, let me know and I will try to help you further
Please do yourself a favor and if you can't get a B12 and quickly, you need more than one - maybe if your PCP wont give you a script for you to do them yourself, you hematologist will - they also specialize in B12 deficiency - it is another type of anemia. In the menatime for one week, you might want to double your B12 sublinguals, I know it sounds like alot but too much can't hurt you, you just pee out the excess but too litlle does major damage.
Also go to a vitamin shoppe or GNC and get some vitamin B1 - 100mg, take 2 ,per day, again you just pee out the excess but not enough is very dangerous.
I took IV infustions iron sucrose and iron dextran - I was severely allergic to both.
If you need to PM someone, click on there name under the picture - then you have to add them as a friend - send a friend request. Once approved, you PM them. My profile is opened to all but dont think you can PM without being a friend. IFyou have trouble with this, let me know and I will try to help you further
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