Updates

[Seattleanne]

Hey everyone!
I thought it might be a good idea to have a thread solely about updates on peoples progress. We with vdd need all the good news we can get!

I started out d therapy in November 2010. I jumped right in with 10,000 iu/ day. Starting level was 9 ng/ml. Retest was done in February and am now 38. I reduced my dose to 5000iu/day. I'm having longer periods of time when I feel sooo much better ( hours at a time)! I still have some symptoms, but, not as constant and my recovery times are muuuuch better. I can totally see the light at the end of the tunnel and think I'll be having a pain free summer!

[Gary3243]

I tried to post on this thread but it popped up as a separate thread.  Please read what I posted regarding inconsistencies among testing methods.  I would check to see which methodology your lab uses.  Thanks for eveyone posting here.  It has kept me sane during my bout with VDD.  Take care  

[Phyllis2010]

Thanks Carrie that's a good suggestion!!! I am curious about possible long term effects of high dosage levels.

[Carrie1959]

Hi Phyllis,  Sorry to hear about your results but at least your symptoms haven't returned so hopefully getting back on the higher doses will get your levels back up.

I haven't read anything about sustained high dosage affecting the kidneys but if you go to Dr Holicks site you can post an individual question and he or a member of his team will reply to you.  It can take a few days but at least you get an answer and they also post Q&A on the noticeboard so it helps others as well.

[Phyllis2010]

Gadgets and SEattleanne thanks for your support and encouragement -- I need it right now to combat my frustration. Gadgets it helped to hear that you're combating your drop in D with 5000 IUs daily. I guess I'll do 5000 IUs for a month then insist the thyroid specialist do another blood test. Seattleanne, the fact that you've been on 10,000 IUs a day since November makes me feel I've got a great deal of leeway in terms of upward titration if I don't get improvement with 5000 IUs. I wonder if you can develop a tolerance to D? Why do they want to cut the dosage down or maintain it as soon as a patient hits decent levels? Can long term high dosage levels of D damage the kidneys? I guess I'm going to have to figure out the dosing since the docs don't seem to know and the recent Guidelines from the Endocrine Society aren't all that helpful. I'm just afraid of regressing to where I was before the start of therapy. Again, thanks to both of you for your help.

[gadgetsmidnight]

That is good news.  I hope your improvement continues.  It is so great when things start going in the right direction.  

[Seattleanne]

Hey all!
Some good news: Improvement is real! I have no idea what my numbers are (no insurance and can't afford the retest), BUT for the past two weeks my volunteer job has given me almost NO pain!! This is a huuuge deal. It's sort of physical work (animal shelter) and had been so painful over the past months that I had cut my hours back. Two weeks in a row now I leave with only minor stiffness and the good kind of sore you get with a workout. Granted... It's not that strenuous, but after years of debilitating pain.... Things are great! Also noticing a lot fewer symptoms overall :) I've been taking 10k iu/day since November in case anyone wonders.