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    Old 04-12-2007, 07:53 PM   #1
    snowflake11
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    are these forteo side effects?

    i've been taking forteo since dec 2006. since then i've been having stomach burning pain above my belly button - in that hollow between/at the bottom of your ribs. i was on fosamax for 10 years prior to this without any side effects or stomach pain. (i went to a gi doc a few months ago for the pain who did an acid reflux test and said i don't have it - he said i have dyspepsia?)

    also, this past week 'both' my knees are hurting badly when i walk. never had any problem with them before. does anyone else having burning stomach pain, or knee joint pains since taking forteo? is this a side effect and should i stop the forteo? thanks.

     
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    Old 04-12-2007, 09:11 PM   #2
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    Re: are these forteo side effects?

    Hi Snowflake
    I have been on Forteo for almost 2 years now and have never had either of the two things you are experiencing. Sorry you are having a bad time.
    Trail

     
    Old 04-13-2007, 09:12 AM   #3
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    Re: are these forteo side effects?

    thanks Trail, I called the company this morning and she told me that 20% of the people in the trials experienced body pain - but it wasn't broken down specifically. she said that wasn't much higher than the placebo group. I guess I shouldn't stop the Forteo then. I don't know what to attribute these new symptoms to. that's the only med I take.

     
    Old 04-13-2007, 10:35 AM   #4
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    Re: are these forteo side effects?

    Hi Snowflake: I've been on forteo for one year and I've never had those side effects, in fact I haven't had any.

    I've read those trials so many times on the side effects, and it always blows my mind that the placebo group had just about the same percentage of symptoms.

    So many things could cause your symptoms, I have a similar prob, but it started before the forteo and I still haven't figured out what's causing it. I'm doing a lactose intolerance trial to see if it's the milk etc that I drink. We'll see... If you want to read the literature on the trials here it is.

    [url]http://pi.lilly.com/us/forteo-pi.pdf[/url] (page 16)

    Good luck with the forteo, and hope you find the solution to your problem.

    Last edited by DesertBloom; 04-13-2007 at 10:41 AM.

     
    Old 04-13-2007, 01:07 PM   #5
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    Re: are these forteo side effects?

    hi desert,

    (pretty nickname!)

    Thanks for your feedback. I had a blood test last week to test my calcium and vit D levels. my calcium was okay but my D was low - 19. He wants me to take 800 IU of Vit D. Anyhow, I wonder if that is causing my symptoms. I'll let you know if they improve with supplementation. I did some looking and found that low Vit D can cause pseudohyperparathyroid - since I also take Forteo which is adding PTH, I wonder if the PTH is too high (because the D is too low). Maybe if I correct the D, then the symptoms will go away ? Anyhow, I will let you know. thanks for your help.

    BTW, what blood tests should I be getting while on Forteo? What blood tests did your doctor order?

     
    Old 04-13-2007, 07:01 PM   #6
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    Re: are these forteo side effects?

    Hi Snowflake: I like your screen name as well, I haven't talked to you in a while, how're you doing aside from the osteo?

    The major biologic function of vitamin D is to maintain normal blood levels of calcium and phosphorous. Before you started the forteo these 3 tests would be the first you would have, and then depending on your readings, they might check your thyroid levels. Some of the thyroid tests they would do, *if needed* would be T3, T4, TSH, FSH, TBG and TRH and there are others like the Parathyroid tests (PTH), but if you're seeing and Endocrinologist or Osteo Dr they would know what to run. When they run the calcium tests they should do blood and urine.

    I'm taking 400 IU of D, which is a normal dose for someone over the age of 50and they recommend 200 IU for those younger (19-50). I also get plenty of sun, due to the climate I live in, so you need to figure that as well, if in a sunny location. If you're younger than 50, with a low D count, it might explain why you need more, but if your count was really low you would be on a much higher dose than what you are (like a dose in the thousands). There are a lot of people here with D probs, so they could explain it better. Normal 25-hydroxy-vitamin D in the blood serum is 25-50 ng/ml and these figures are highly debated. Keep in mind that different labs have different reference ranges also.

    Symptoms of low D are weak muscles; pains in legs and muscles; hearing loss. There are other symptoms besides these but I'm not familiar with your side effects as a cause.

    When you say your PTH is too high, do you mean because you're taking forteo or that your PTH test was high? You shouldn't have any trouble taking forteo with a D prob, *as long as the D is treated properly* to correctly control your calcium and phosphorous levels.

    I had all of the tests I mentioned above, plus hormone panels, and thyroid ultrasound, but that was only because I have hormone defeciency, thyroid nodule, and slightly elevated ionized calcium.


    Good luck with this, and I hope the D is not a problem.

     
    Old 04-13-2007, 07:44 PM   #7
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    Re: are these forteo side effects?

    wow, thanks for all that. you educated me!! i am going to talk to my doctor about those tests. aside from the osteo, i am doing okay, but i do have a real mystery that no docs can figure out. in addition to the stomach pain and knee pain, i have got this insatiable thirst - its been a problem since last feb - over a year now. but my mouth isn't dry, nor is my urine dark - it just feels like i HAVE to drink, but drinking doesn't make it go away. its not diabetes - been checked many times. nor is it that antidiuretic hormone thing. i keep going back to it being something to do with bones - pth or high/lowphosphorus or high calcium or an acid/base disturbance, but my tests seem to come back okay. it is all so frustrating. it all started when i stopped the fosamax. i don't know if its a coincidence or not. i was on fosamax for over 10 years. i called the company and they haven't heard of it. anyhow, i just can't drink enough to satisfy myself. sometimes its better than other times. but sometimes its so bad i literally cry. i have been keeping a food diary and can't seem to find correlations. in all your wisdom, have you ever heard of this? could my calcium be okay, but ionized calcium be too high? could that cause this? that's never been checked cuz my regular calcium is okay. my thyroid test tsh and t4 came back okay too. or heck, maybe this is a low vitamin d symptom? i assume the extra 400 vit d will help me - btw, i am 45. oh and speaking of snowflakes - i'm in NY and we are sposed to see LOTS of them this weekend. oh yippeee!!!!

     
    Old 04-13-2007, 08:01 PM   #8
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    Re: are these forteo side effects?

    Hi again: Off the top of my head the only thing would be if you're taking diurectics, steriods or anyother med that causes this; what hormone "thing" are you talking about? Diabetes is the primary thing that causes that, but you don't have it. Is the water you're drinking bottled water? If you were drinking tap water that is softened that would pull the calcium and magnesium from your body making you thirsty.

    Sorry I don't know, but stay on top of it, and drink before you get thirsty, that might help to cut down some. Is your urine output normal?

    I'll think about it and see if I can come up with something.

    Last edited by DesertBloom; 04-13-2007 at 08:05 PM.

     
    Old 04-14-2007, 08:44 AM   #9
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    Re: are these forteo side effects?

    thanks for thinking! um, there is an antidiuretic hormone that can cause you to have dilute urine and pee all the time - its a weird disease (SIADH), but i don't have it. i thought high calcium caused thirst - but low can too, eh? mine has never been tested low though - always near the top (9.9 or 10), despite my vit d being low. the few times my mag has been tested its been okay too, but i didn't realize that low mag causes thirst, too. hmmm.....! maybe my levels fluctuate and they just haven't caught it right? no, my water is not softened. and yes, my urine output is normal. i'm not dehydrated at all. in fact, i was so beyond thirsty when this first started that i drank ALOT not knowing, and ended up very hypernatremic. the docs told me i had way too much water in my blood and put me on salt pills. and yet, despite being way overly hydrated i was still EXTREMELY thirsty! that's why this is so very strange and beyond frustrating. i truly think it is some sort of imbalance - my body feels like it needs to flush out something or is lacking something, but all the basic blood tests come back normal. i don't now what is going on, and now with this knee pain.....man, i feel like i'm 80 and i'm only 45! if you come across anything - please do share. meanwhile i hope you are having a good day today. i really appreciate all your advice.

     
    Old 04-15-2007, 04:57 PM   #10
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    Re: are these forteo side effects?

    hi desert (and all) - can i pick your brain(s) for a moment? this is kind of complicated, but i think i know what has been causing my troubles and i'd like your input.

    i found ALL my symptoms under the disease - hyperparathyroidism - thirst, frequent urination, knee/joint pain, upper abdominal pain, weakness, fatigue. my vitamin d has been low 3 times when they have tested it. low d can cause secondary hyperparathyroidism. (the primary form is caused by tumors). i think i have the 2ndary form. i stopped taking fosamax after 10 years and thats when the extreme thirst began - i think it must have something to do with pth levels - fosamax suppresses calcium release from the bones which likely affects the level of pth, right? and now that i'm not taking it......???? wonder what's going on. wonder how taking the forteo is affecting stuff. my urine was often cloudy this past summer (not so much now) and thats when i was at my worst - so tired, so thirsty. so was i peeing out calcium and thats why the thirst? many times my urine tested pos for phosphates. I have noticed that i get very thirsty after eating foods high in phosphates. currently my urine has been clear, but sometimes i get bouts of frequency where i have to go like every hour - just bits.
    bottom line: my gut tells me that all this is due to high pth, low vit d, calcium and phosphorous levels - somehow!!!!

    some stats:
    my calcium always comes back high normal - 9.9, 10
    my d is currently 19, has been 18 and 17 on earlier tests last year
    my one pth test last may was 32 - within range, but now i'm thinking it was maybe too high and not caught by my doctor - i read that if your calcium is high normal or normal that your pth should be near 0. but i suspect now that it was high cuz of the low d.

    SO can i please ask you guys what you know about all this stuff? and what you think? i'd really like your help in putting all these clues together. anyone up to snuff on all this medical science? thanks immensely in advance!

     
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