Kinda upset, results of some tests

Discussion in 'Fibromyalgia Main Forum' started by karen55, Jan 27, 2003.

  1. karen55

    karen55 New Member

    I posted about the "endocringeologist" I saw last week, and how much I did NOT like him. He ran a bunch of specific hormone/thyroid tests. I was supposed to see the rheumy who referred me to the endo today, but her office called me this morning to reschedule me for Wednesday. I had planned on asking her to get the test results from him and was going to speak with her about this endocrinologist, who I do not like, and did not want to see again.
    Well, after the phone call from the rheumy's nurse, I got a phone call from the endo's office. They told me I have to come in next week because they have the results of my tests. All the hormone/thyroid, every other test he ran were normal EXCEPT the IGF-1. I was below the lowest on the scale. I had no idea what it was, they told me I would then have to see someone who was the "diabetic counselor". So I made the nurse back up and explain a little to me. She told me this has to do with insulin production and pancreas and to "look it up and do some research before I come next week".
    She told me to check Somatomedin C, which I did, and that's the adult human growth hormone deficiency. This is really scary. I printed out a 7 page thing online and in addition to confusing/scaring me, it states that the treatment is daily injections of the human growth hormone over a long period, very expensive, and has connections to different cancers?!?
    I feel so overwhelmed right now, like I could just break down and cry. I know I'm whining, but I've always tried to take care of myself, I don't smoke or drink, I eat well, avoid fried and fatty foods, have been avoiding sugar, try to exercise (in fact worked out regularly for years until recently when it became too painful).
    My husband, who was a 3 pack a day smoker and had a heart attack 2.5 years ago, went this morning for his annual stress test/EKG, etc. and got his blood test results too. He is still smoking on the sly, and his blood tests were great and he passed all his tests with flying colors, in fact they told him they look better than they ever have. He hasn't exercised in 6 months, he eats a lot of crap, and he's checking out fine, whereas I really TRY to take care of me, and one thing after another keeps turning up.
    I am on pins and needles right now from worry. And one major thing, actually the bottom line thing I'm stressing over, is insurance coverage. I work for a VERY small company, our rates have always been high, over the last 2 year period they have tripled, and the company is searching for other coverage. I have coverage now, but I'm scared to death that I will become uninsurable. I know there are many here who don't even have insurance, so I shouldn't complain.
    It just seems like everything I do that should be having a positive effect on me, ends up coming out with a negative report. This IGF-1 thing is mind boggling to me right now and I just can't grasp the implications.
  2. ouchyngrumpy

    ouchyngrumpy New Member

    Why don't you call your rheumy and tell him/her that you r'cd some very disturbing results from your endo. that you don't understand and would she/he pls call the endo for the results before our Wed meet so you will be able to discuss them intelligently. (Maybe you can politely exempt yourself from ever going back to the endo. this way.)

    Your endo sounds like a jerk at best and/or his office is a mess but that is no excuse to leave you hanging like that. It would have been better had they not called you with info--just to make a appt. You are not the health pro. in this relationship they are.

    Take Care.
  3. Mikie

    Mikie Moderator

    Take a big, deep breath. Yes, the injections of hgh can feed cancer cells. This is one of the potential side effects of the treatment. Experts who use this treatment test continually and keep an eye on things so that cancer does not develop. The key word is "expert." Be sure the doc treating with the hgh injections is very knowledgeable in the use of them. Second, insurance usually pays for hgh injections if a person needs it because if you do not produce it, it will lead to serious illness.

    The good news is that this is a very effective treatment and can really turn things around for you.

    Like most of our decisions, it is a matter of balancing the risks versus the benefits. Not having any hgh in the body is a HUGE risk. I would not consider this treatment unless I were in that situation, but if I were, I would definitely consider it. Spend all the time you need to understand all the benefits and risks and to ensure that you are comfortable with this doc's abilities and knowledge, regardless of whether you like him.

    Not to scare you, but simply by having FMS, we are more prone to several types of cancer. At least, if you are under treatment for hgh, they will be keeping a steady eye on that.

    Love, Mikie
  4. karen55

    karen55 New Member

    for the support. I'm so confused. I'm reading all this stuff and it's not making sense to me. How does this relate to diabetes? They told me I was going to have to talk to the diabetic counselor.

    Mikie, I also read that once you start taking hgh, you have to continue it because if you stop you end up right back where you were before you started?

    I am SO mad that they call me, give me a little bit of halfassed information, tell ME to research it, all of this a week before my appointment.

    Another reason I am mad at this doc is that I noticed last night, his diagnosis on my initial visit was "acute low back pain". That has NOTHING to do with what I was sent to him for!
  5. Mikie

    Mikie Moderator

    When the body will not produce a vital hormone, one must usually continue to take it, like thyroid hormone.

    It would not hurt to get another opinion if it helps you to feel more confident in this doc or decide to find another doctor.

    As for researching, I'm sure you would want to do this anyway before deciding on an important treatment. I can understand your anger, but, Sweetie, right now, anger isn't serving you well. Sit quietly, focus on your breathing and continue to do that until calmness returns and stress flows out. It will make understanding what you need to research easier. I find when I am anxious or angry, I cannot grasp anything.

    Love, Mikie
  6. Bambi

    Bambi New Member

    the very best thing you can do is
    relax as best you can. Do you have a
    close friend or relative you can talk to or spend some time with, in person or on the phone? Sometimes it helps to bounce the situation off on someone you know who loves you. Can
    you talk to your husband? Sometimes we can and sometimes they are just too close and too worried to be much
    comfort. Do take good care of yourself for the next week, maybe you
    can get your appointment moved up with the doctor you like and he/she can explain it to you better? I look
    at research on my own sort of like
    house hunting, don't look at too many
    sources at once..it may confuse you and make things worse. Take care and
    we will be praying for you.
    ((((((Hugs)))))) Bambi
  7. karen55

    karen55 New Member

    Mikie, I know you're right, I need to get a handle on my anger. I just keep thinking of how long I've had certain symptoms, and wondering WHY no one ever thought of any of this before, why it never occurred to none of the docs I've seen in the past to check hormone levels. I read that this hormone is produced during deep sleep, and all my docs know I haven't been getting that deep sleep for years and I can't help but wonder if I HAD been, would this still be the case?
    Like I said, it's very confusing and overwhelming to me. I'm going to ask the doc for a copy of the blood test results when I go next Monday. I'm also going to make the rheumy aware of all of this when I see her tomorrow. I will also mention the product that's available from this site and see if that's an option.
    I printed a lot of stuff yesterday, left it for my hubby to read when he got home from work last night. I was asleep by the time he got home. Really had nowhere to turn yesterday, my best friend was out of town dealing with a death in her family, I couldn't reach my sister by phone, and hubby was at work. Not the best day I've had recently.
    I'm trying to calm down over this, I think that I'm in panic mode right now and scared.
    Thanks again for the support, at least I could turn here when my "real life" support system was unavailable.

    Karen
  8. Elvira

    Elvira New Member

    This can be handled by an expert physician if you really do need to get the injections. And actually, you may benefit more than you know from it. It is speculated that many fibro sufferers have low growth hormone levels, and that the injections can actually help to lessen the fibro symptoms quite dramatically. If you end up getting them, you may find yourself feeling much better. If your doctor prescribes the injections, but your insurance won't cover it, definitely try out that IGF-1 product from this website. I have actually wished that I could get the injections prescribed for myself because I feel so strongly that it would be beneficial. Good luck to you and hang in there. Let us know what happens.

    Hugs,
    Anita
  9. Mikie

    Mikie Moderator

    It is not nearly as effective as the injections, but it does not carry the cancer danger as a side effect. It will only stimulate the body to make its own hgh if it is deficient. I do feel better when I take it.

    There is a form of it sold on this site.

    Hgh is made during sleep and exercise. I am getting better quality sleep by taking Klonopin so that my body can heal itself and produce hgh. I doubt this would be enough for a person who is totally deficient in hgh, but I don't know. It certainly wouldn't hurt to ask the doc about alternate treatments.

    Love, Mikie
  10. karen55

    karen55 New Member

    Thanks again. I plan to ask about alternatives. I am cancer-phobic these days since my mom's dx a year ago with lung cancer in both lungs.
  11. Dara

    Dara New Member

    I also was tested for the HGH and my number was 60. I was told that for someone my age it should be between 260 - 270. After being diagnosed with low human growth hormone, I had a test done at OHSU to see if they could stimulate my petuitary gland, which is the gland that produced growth hormone. They found that they could make my petuitary gland produce the hormone, but it just doesn't want to on it's own. If i had not been able to produce it then I would have been considered for the growth hormone injections, but even the doctor told me that most insurance companies do not pay for this because it is not proven that they work, only a theory, so far. I don't know where you live, but the Oregon Health Sciences University has a clinic trial going on for the human growth hormone.

    Also, you said you worried about the health insurance. My understanding, and I'm no expert on this, is that if you are now insured under a group medical policy and you are moved to another group medical policy, they can not refuse to insure you. I know there is something about being sure you do not let your insurance lapse between the two coverages.

    Hope this helps relieve your stress a little. Let us know what you find out from the endo.

    Dara
  12. karen55

    karen55 New Member

    I just had my followup with my rheumy (who I LOVE!). She is very attentive, asks a lot of questions, listens very patiently. She was interested in how the endo visit went, so I told her - everything - and told her what's happened this week with the IGF-1 thing. Brought all my printouts with me and she explained things better to me, so I'm not feeling near as panicky as I was Monday. She said when I go for the followup next week with the endo, they will probably do just as you said, try to stimulate it. How exactly do they do that??
    I also gave her my printouts on the stuff sold here. She was talking to me about the "possibility" of those injections, and I told her I had to know MUCH more about that and what other alternatives were out there before I would even consider making a decision, and she asked about nasal or sublingual, so I was really glad I had at least done some homework. :)
    Guess all I can do is wait until next week and see what happens.
    I thought my pain level was better the last couple days since it's warmed up here, but I actually only ended up with one "better" day. I am back to at least 3x/day with the meds.
    Thanks for all the support and advice, you guys are great!

    Karen
  13. Dara

    Dara New Member

    when I went into the Lab for my "stimulation" process this is how it went: I could have nothing to eat 12 hours before, I could have black coffee and water though. All they did was draw a couple vials of blood, then gave me an injection which is what is suppose to stimulate the petuitary gland. After that they drew blood every half hour for about two hours, that was all. The only side affect, I was told, is that sometimes people will feel flushed after receiving the stimulating injection. I didn't feel any flushing or any other side affects. Hope this helps you.

    Dara
  14. karen55

    karen55 New Member

    for this info. I see the endo doc Monday morning. I won't have anything to eat or drink after dinner tomorrow night, *just in case* that's what I will be doing, so hopefully it can be done the same day. (I need to be careful of the amount of work I'm missing. I will be off all day next Friday to go to court with my daughter and then my regular doc's appt. with my osteo.)

    Karen