Snowflake- Hi! I am glad to hear you feel better. I wondered about what you wrote about your d being low before forteo and your pth then being mid normal. Do you recall what your low d level was ,and did you supplement d and bring your level up? If you supplemented , what was the amount of d you were to take and what level were you able to raise your d to? I am facing a very low d level and it hasn't wanted to budge.
You must really be looking forward to your appt on Monday. Good luck with that.
Last edited by osteoblast; 06-08-2007 at 10:33 PM.
Oh yes - I am very much looking forward to Monday. I may decide not to do anything till then - I am afraid to restart the Fosamax with the PTH so low. The Forteo seems to cause so many side effects. It's just tough dealing with all this stress. I really need to talk to the doctor.
To answer your q's - my D before Forteo was 18. I got it up to 37 just by taking 2 Vit D pills - 800 mg. But now its low again - I don't seem to be able to handle taking D supplements. They make me so thirsty. Hence, I think maybe I have Sarc. But eventually I trust that we'll get it all figured out. I have to trust that.
I don't know why you can't bring your d up - but maybe its not a problem. If your calcium is okay, then is low D really a problem? Maybe not. ???????? Do you sit in the sun at all? That may help.
Initially I was on 800 d a day. My d went down to 19 on that dose.I was then put on 2000 d/day for 3 months - my d went up 1 point 19-20. Now I am on scripted hi dose d of 50,000 each week. I'll have a blood test including the d soon. I don't know why the 2000 a day did nothing. I have been tested for possible malabsorption and I don't have a problem.
During winter at the latitude I am at you can't do anything with the sun- it's not going to move the d. Now is a different story and I am getting some sun.
From what I have read d is very important. The Canadian Cancer Society just put out an advisory that Canadian adults should supplement at least 1000 a day during fall andwinter, and year round for some. They said that based on a US study there was a 60%lower risk of developing breast, colon and other cancers for women who supplemented. Also they article mentioned other evidence supporting the advice to supplement.So, I want to be sure to get my d up and keep it up for cancer prevention and bone health.
Last edited by osteoblast; 06-08-2007 at 05:52 PM.
hey - well i do hope its up at your next test. please let me know. i'd go back and look at possible sarcoidosis if its down again - in that disease the 25,D is low because it is being actively and unregulatedly converted to 1,25 D. so the 1,25 D is high and causing symptoms, but doctors don't usually test that. they tell you to take MORE D which is actually the wrong thing to be doing. It just throws more fuel for the conversion and things keep getting worse, not better. btw, are your kidney's okay?
I just did some searching and found that a low 25,D corresponds with a high PTH level. In my case, I have low 25,D but also a LOW PTH - so this also supports my Sarc. theory. If my 1,25 D is high, it could be causing the low (non-existant) PTH. oh i can't wait till Monday for some explanation of all this!!!!
Last edited by snowflake11; 06-08-2007 at 07:41 PM.
It sounds like you have looked at the various aspects of your situation. How does your dr. react to it if you go in with highly specific theories , questions etc.? I have had some drs who have been not interested in having patient involvement. I hope your dr. really helps you!
Yes, I think my kidneys are ok. I have had several 24 hr. urine tests done. I don't have any problems with my kidneys that I know of. I guess you would know if there was a problem with your kidneys?
Last edited by osteoblast; 06-08-2007 at 08:52 PM.
25 hydroxy vitamin D is the most accurate measure of vitamin D stores in the body.
25 hydroxy vitamin D is stored in the liver where it is converted from other forms of vitamin D either obtained from the diet or made in the skin by sunlight. 25 hydroxy vitamin D is then changed to its active form, 1,25 dihydroxy vitamin D in the kidney. This active form of vitamin D causes increases in calcium and phosphate by activity primarily on the intestines, kidney and bone.
Low blood levels of 25 hydroxy Vitamin D may mean that you are not getting enough exposure to sunlight or enough dietary vitamin D to meet your body’s demand or that there is a problem with its absorption from the intestines. High levels of 25 hydroxy Vitamin D usually reflect excess supplementation from vitamin pills or other nutritional supplements.
Low levels of 1,25 di OH Vitamin D can be seen in kidney disease and are one of the earliest changes to occur in persons with early kidney failure.
High levels of 1,25 di OH Vitamin D may occur when there is excess parathryoid hormone or when there are diseases, such as sarcoidosis or some lymphomas, that can make 1,25 di OH Vitamin D outside of the kidneys.
Thanks, Snowflake. Hope you start feeling better and also that you can get some helpful suggestions from your upcoming doc appointment. Hope he/she listens to you without interruptions and answers your questions
i saw my doctor today. He still doesn't have a clue about why the thirst, nor the fatigue, nor the burning hands. he said my pth could be so low because I am taking forteo. my body may be sensing the forteo and supressing my own pth. supposedly the pth test doesn't pick up the forteo (pth), only the natural body pth. (thats what he thinks anyhow, but he says he doesn't really have an explanation for it.) he wants me to continue taking the forteo.
so am i any further ahead? who knows? i guess i feel better after talking to him at least. my vit 1,25 d test isn't back yet.
i just took the forteo again today. guess we'll see.......
Hi Snowflake- Interesting that the dr. agreed with my initial theory to you that maybe the body is taking into account the forteo and not making as much pth. If you remember I also had a decreased pth after starting forteo. I am still thinking , however, that it is so complex that maybe your dr. is right or maybe he's just speculating. Well, do you feel that you made any progess today? What was his response about the sarcoidosis? And, you said he had nothing to say about the thirst??? Does this end the search for you as to what is going on? Will you still go to Hopkins? Did he have anything to say about your white blood cell count? Maybe you recall that both my wbc and rbc really declined after starting forteo? As I said before either I am falling to pieces or the forteo is really taking a toll.
yes, it seems your initial theory was right - at least according to my doc's guesses - but even he admits he's confused by it. usually if D is low, PTH is high. do you have leg stiffness with the forteo? i've got leg stiffness, and now the palms of my hands are burning. i don't know what kind of powerful drug it is but it sure does seem to be causing side effects. Um, no, this does not end my search. i still feel like crap and i still want answers. so yes, i am still going to hopkins. i am not sure about sarc, but they don't seem to think i have it - good news. not sure about the white blood cells caused by forteo because mine were low before starting it. it hasn't made them any higher though! Like you, it seems one day I just started falling apart. i so want to feel like myself again that I am NOT giving up the search. Let's hang in there with each other! Where there's hope there's..... well....hope!!!!
Last edited by snowflake11; 06-12-2007 at 04:45 PM.
Snowflake-Here's to hope! You sound better, relieved in some way. Is that right??So have you got the Hopkins trip scheduled and will it happen for sure?How will it work, do you stay somewhere locally and just plan to be there for several days? I really hope that you get the help that you are looking for.
I can't say I have leg stiffness but at night I wake up with pain in my legs. I don't think it's restless leg syndrome. I can't really call it cramping and I don't have to get up. It's pain and I just change position and it seems that relieves it. This started before forteo. I can't figure it out . I've had so much on the table that I haven't even talked to the dr. about it. I also walk alot everyday and have thought it may just be connected to alot of walking. I have also thought it may be connected with my hypothyroid or vitamin d /iron deficiency-all can have associated pains. I hope that with the hypo treated and the vit. d and iron being worked on that things will get better. But the prob. predates forteo by several years. No pains in my legs during the day. Any thoughts?I should add that in the first two weeks of forteo , I had a few occasions where I had muscle cramping in my legs at night.As to burning hands, I don't have anything like that and wonder what this could be for you.All these things are so odd !
I just had a blood draw today to check on various things and will let you know if there turns out to be anything that looks like it has a connection to the forteo. Soon I have an appt. to see a new pcp- an internist.To be honest about it , forteo really scares me. I don't like any meds at all. I am in my 50's and just on thyroid med and forteo. I have heard that many older people are on as many as 5 meds. I really want to avoid this by doing anything I can to get my health back and maintain it. I am willing to change my diet and habits , and would rather do so than to be on a drug. I hope my new internist is proactive and wellness oriented. It seems like some dr.s just wait for the problem to develop rather than trying to discern a trend that could be troublesome and do something to reverse the trend.Do you know what I mean??
Take care and I hope that you are enjoying your outdoor moments! I am enjoying my daily walks. The robins skitter in front of me on the path , and their song is so cheerful. They seem really happy now and it raises my spirits to be out with them!
Last edited by osteoblast; 06-12-2007 at 10:16 PM.
gotta love the robins!! and the bluejays! "Robins are red, bluejays are blue, you're very nice, i'm glad to know you.......hee-hee!
anyhow, i don't have a date for hopkins - waiting for a call. yes i have so many odd symptoms. Its truly a mystery. I feel like I must have been bitten by an exotic alien insect or something. its truly confounding.
i hear you - forteo scares me too, but so does doing nothing. and i'm like you with meds - i am very very sensitiive to them and i dont even like taking aspirin.
i will be interested in your next blood results. i do hope you like your new doctor - i like to find docs that are into wellness and proactive too. I see trends in my blood work that i point out to them, but i think most docs are too busy to sit down and go thru all thier patients records looking for stuff lke that. be nice if they wold but these days i guess its just about impossible because they see so many patients. but its the trends that are very important.
keep enjoying your walks! at least we can keep our spirits healthy.
Snowflake-You sure do sound chipper . What turned you around?? I need some of it too. Seriously what caused you to turn a corner?
I have just been through thyroid hell. Because of iron supplements I have to take to raise my ferritin, my tsh(indicator of thyroid function) went up. Iron reduces absorption of the thyroid med. The dr. then raised the thyroid meds and went too far- causing me to become hyperthyroid. The last three weeks on the increased dose has been like taking off for the stratosphere. Up up and away. Monday I called the dr. and said I can't take it anymore. My pulse was racing, heart pounding, lying in bed wide awake last four nights. I got the blood results back today . Again, just another incidence of you have to listen to your body. The dr. didn't want to re-check for several weeks, I had to push it . Well, yes indeed the lab results show I have gone into hyperthyroid which is the worst for me because of the osteoporosis. Hyperthyroid causes bone loss. Oh great. Now the dr. says stop the med for a few days and go back to old dose and re-check in four weeks. This is pretty bad. Because of the low ferritin , I have to continue on the iron probably another 6 months. So, this situation is going to be on the edge for awhile I think. Which is a problem if I am going into hyperthyroid where I would lose bone esp. when I am on the forteo to build bone. The gods must be crazy or just cruel.
I try though to look at the bright side. I really love my walks . As I said the robins are singing their hearts out. When I hear them I think " now that makes more sense than anything I have heard today!" It's my robin therapy.
It costs nothing and it really helps.
Later today I am going to get the full lab report back and then I'll be able to let you know if there is anything that makes me wonder about the forteo.
Until later. Enjoy the robins and the bluebirds. We don't have bluebirds around here. We have steller's jay .They are a beautiful brilliant deep blue with a wild sort of mohawk on their head. They are the forest ruffians. They swoop around together like a gang of thugs and they can be pretty aggressive with the robins. It's tough out there.
Sorry to have gone on so long - it's the hyperthyroid making me do it. Hopefully I'll come down soon.
I love it! Your "robin therapy" - an awesome image. I saw a robin today bathing in our birdbath and I watched her with jealousy thinking how great that must feel. I'd love to be a bird for awhile.
I do empathize with you trying to get things regulated. It can be such a frustration while they experiment with dosage to find the right one. I do hope he will figure it out soon. At least you are on the Forteo - better than doing nothing for your bones during this. At worst perhaps it will just save them from any further damage. i suspect the hyper moments are kind of scarey for you.
As for what turned my misery around - honestly I think it was just thinking of all the other people here and elsewhere with problems. I can have a huge pity party when I think I am the only one having a rough time. I started to be grateful for all the peeps trying to help me and all the voices like yours out there in the ethers who don't even know me, but who care. I started focusing on the good parts of life and perhaps that is what did it. I realized how I've been trying to figure everything out myself and how much stress that is causing me. then I just decided to relax. I can't know what's wrong so I'm focusing on what's right. does that make sense? all we can do is what we know at the moment to do. I pulled back into the Now. Hope it helps you?
Do please post your nums when you get them.......till then have a happy Now moment.
Hi Snowflake: I was wondering if you had ever thought about contacting Dr Norman/Pollitz clinic in Florida about your low PTH/D? I'm sure you've read all the threads on Hyperpara on this board and in particular the op's that had surgery down there.
I realize you don't have Hyperpara, but Hypopara, but maybe you could find out something from contacting that Drs clinic. I'm sure those who went down there for surgery could tell you how to do that, and I believe they do telephone consults, once they recieve your labs; the others who went could explain it better.
I'm sure you don't need surgery, but maybe they could steer you in some direction on this. If you go to the web site, it's mostly on Hyperpara, Vit D, Calcium, etc, but there is a section on Hypo also, so they must treat that as well, or do consults.
Anyway just thought I would mention it if you hadn't thought of it, or you could at least read what he has to say about Hypo, and maybe consider it a fact finding mission
hi desert, yes i have been reading some things about him and that is a really good idea to contact him. I think i'll wait to see what hopkins has to say first and then if I still need resolution i will look him up. I tend to think he is so busy that he wouldn't have time for me, but who knows. maybe he would. Thanks for thinking of that option. it's a good idea.