help getting through bad week

ok well I just had my 1 yr post ds labs done and I am having a melt down right now. My PCP whom I have NEVER talked to except during my physicals called me personally twice this week..  telling me 1) I might need surgery on my parathyroid and than 2) I need infusions cause my osteopenia has turned into osteoporosis..  Not to mention that she and my surgeon both say for the most part the rest of my labs are ok I have been harrassed by another group that I am not worth helping (even though I have done as they said) because I am questioning their all mightness.. Now I understand that vets have a lot of experience and are very helpfull but that should not mean you cannot ask questions. 

SOOOO here I am freaking out and they kick me out of the group.. thanks for the help jerks.... So I am here where there are kinder questler people :)

Here is where I am..

pth is currently 108 last reading was 18 and the reading before that was 89

pcp says I need to go to an endo and may need my parathyroids operated on. I have read on the internet and it seems that many times wls patients are operated on unnessarily. I have an appt with the endo first appt isnt for 1.5 months  but on waiting list.

surgeon says I need a bone density (which I had already done but nothing was said from him after learning the results).

since my reading was high and than went to normal and back to high does that effect what one would think the problem is. I realllly do not want to have surgery if not necessary but I also realize this is stealing my bones..

my calcium is 8.6 prevous it was 9 and priot to that 8.8  so this time it is actually out of normal range but although the previous 2 readings were in range they were at the low end..

My vit D was the really only good thing it was 64 which is pretty much in the middle.. previous readings were 59 and before that 28.9. So it has continuously going up. other group says I need to increase my D but I really do not think so. it is going up just fine with what am I taking. surgeon and pcp say no need to increase.. But it bothers me that the other group is adament it needs more.. I do not see it..

My Hemocrit and hemoglobin both have been continuing downward the whole time. hemocrit going from 39.5 to 38.4 now down to out of range at 34.1 hemoglobin started at 13.4 to 12.6 and now at the bottom of the range at 11.7

my white blood count started out out of range at 3.5 went into range at 7.9 and now back out of range at 3.3

my red blood count started in range at 4.43 dropped to 4.37 and now finally out of range at 3.68

none of this seems to be following any kinda of logical pattern that I can see from what I knew about these tests..

than there is my iron and ferritin.. 

my iron is in range at 80 but the other people insist I need iron infusions immediatly. previous reading was done at 65 but I started out at 80. Dunno why it dropped last time but I would say 80 is a realistc number for me and is within range ...

I suspect the problem comes in with my ferritin..  My first reading 6 months ago was 41 within range albeit low.. but in 6 months it dropped to 24.. since low range is 11 it is still within range.. BUT if it drops drastically again it would certainly put me in danger of being out of range.

than my A which started out at 27 went up to 40 when I started taking 2 pills a day and than dropped down this last time to 17 after dropping back down to 1 pill cause my surgeos office was freaking out over such a high dose of vit A.. Even though even with 2 a day it didnt even come close to the high range....

I am taking vitamins for all these things..

iron 65 elemntal

calcium 630mg

A 25,000

D 50,000

currently my plan is to increase A and D to 2 tablets continue taking my iron as listed and double up on my calcium.. going to have to take a different calcium cause I cannot handle more of those horse pills. I have an appt with both the hematologist and the endocronologist. But I want to be well educated on all this stuff before I go.

If you have any experience with these please write back to me.. and if you dont I sure could use some encouragment cause I am reallly stressing out about this having mini panic attacks which is not helping :(

thanks

Your parathyroid glands are not the problem. Actually, they are doing their job as they are supposed to do to maintain a normal (or at least near normal) level of calcium in your blood. Your serum calcium level is tightly regulated because a normal calcium level is needed by your heart. that's why, if you don't consume or absorb enough calcium, you steal it from your bones. Your parathyroid glands crank out more PTH to facilitate this.

I also struggled with an elevated PTH. I tried increasing my vitamin D as my level was low. My level came up nicely but PTH did not improve. So I tried a different form of calcium that others had recommended as being even better absorbed than calcium citrate. No improvement.

So then I really got serious about this and increased by D to 100,000 units dry D daily (even though my D level was already good on less) AND increased my calcium citrate to at least 2000 mg daily. And finally my PTH is steadily improving. My D level didn't change much even though I doubled the amount I was taking, but the improved PTH shows that the increased D did make a difference.

My point is that for some of us, it takes a truly major intake of both D and calcium to keep PTH normal and avoid bone loss. It looks like you aren't taking enough calcium, and I don't know what form of calcium you are using because you didn't say. You can either take calcium citrate pills (easy to get at CostCo or anywhere else) just make sure you take a FULL dose - the pills are usually just 250 mg, so a dose is 2 pills at a time. Or, you can get the 500 mg calcium citrate lozenges from Bariatric Advantage and take one 4 times daily. that's what I use because those pills are big and I'm one of those people who has trouble with large pills.

I can't explain why some people have more problems with one mineral or another than other people. and I have no personal experience with the iron and ferritin problems so I won't comment on those. But I do believe that if you increase both your D and your calcium citrate at the same time it should make a difference. And definitely don't get talked into any surgery you don't really need.

Larra

Tks for the reply. So even though my d is fine I should oncreade..  I will try that. I have over a month before the appt sp hoping I can get my numbers up and cancel. I take calcium citrate I can't stand the size of them. Thinking of going to either petite or I think I read there is a powder you can take.  Once I get the smaller or powder I will increase to 2000 which seems to be the amount everyone agrees. I THOUGHT I was taking 1200 but was wrong only 600 so that was bad. 

I guess you had no issue with a? My surgeon makes me get blood work every month I am in large dose of A and it us frustrating since my insurance won't cover orders from him since he is out of state do i have to bring his script to my pcp and convince her to order then which she hates to do. Very annoying 

Larra has you on the right track.  Here's something else you should add asap.  Do to patchmd and get the D patches.  Wear these is addition to taking the dry D for a month.  And do hunt for a promo code.  There is usually one out there for 40% off.

Great idea about the Patch meds! And I hope you're using the "dry" D.

Those calcium pills really are large. If a pill cutter won't work for you, I really recommend the Bariatric Advantage products. Yes, they cost more, but SO much easier to take, which helps a lot when you need to take calcum 4 times a day. The lozenges can either be chewed or just suck on them til they dissolve. I like the chocolate and cherry flavors. They have made calcium so much easier for me.

I haven't had problems with A or iron. But that's why we continue to get our labs checked; you never know what the future holds. If I have problems I will deal with them, as you are doing.

Larra

Just to add a little bit to the conversation. I agree you are taking too little calcium and I can't really argue that extra D would help. I think magnesium might also help the calcium absorption. I would triple your calcium to somewhere between 1500 and 2000 (3 doses per day of 500-600mg). 

I would go back to two Vitamin A's till your levels go back up. Have the argument when the DOc's office freaks out ( sorry - I mean discussion. :) ) that they may think it is too much but they can't prove it by your labs.

I would also increase your iron. The 65mg doesn't seem to be enough. Actually, I may be getting to thes out of order and now realize you may have added proferrin forte which would be helpful. If so, just disregard. Your iron is in range but the hemaglobin and hematocrit numbers may reflect the need for more.

You can turn this around. If there is a good side to low readings it is that you can make changes to reverse the downward trends.  Good luck with the endo and hema. You'll have to see if the hema feels you are low enough to need the infusion. They seem all over the place on when they recommend infusions.

Pete