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The struggle is real.

Discussion in 'Parents of Children with Type 1' started by CaitlynGrisham, May 14, 2013.

  1. CaitlynGrisham

    CaitlynGrisham Approved members

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    So, I've posted a lot about this issue, and I'm really sorry. I just don't know where else to turn for help.

    Some of you may remember that I have been experiencing red, swollen sites that are hot to the touch and that don't heal for days. Well, new things have been popping up, and I am insanely frustrated.

    This is what I've been experiencing:
    • sleeping 12+ hours and still feeling tired
    • insane insulin resistance (100+ units per day)
    • 30+ lb weight gain
    • tight calf muscles when walking/running
    • hair falling out
    • nails not growing
    • extremely dry skin
    • swollen, red sites
    • insane scar tissue buildup
    • cravings for eating a TON of food (this is very unsual)

    I realize that you guys aren't doctors, but I figure that I can't be the only one experiencing this?

    I got tested for insulin allergy stuff (finally!) and all of that came back negative. I got my thyroid tested, and that came back fine. I have tried using Symlin, but it didn't work for me.

    I've seen two of the doctors in my area (As of last post, I hadn't), and neither of them knew what to do with me; one is setting me up with a dexcom, which is nice.

    I don't know what to do anymore. This is causing me so much anxiety, and I'm having panic attacks all over the place because of it. If any of you know of any resources (people, websites, etc.) that I could utilize, I'd love to have them! I've already talked to a few people through Kerri of sixuntilme, and I found some great people, but no one who is dealing with what I'm dealing with.
     
  2. dzirbel

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    You mentioned that your thyroid came back fine. What were the numbers? The reason I ask is because what is considered the "normal range" is not always normal for some. I can't tolerate being at the upper end of normal. A lot of those symptoms make me think of Hashimoto's. Also see which thyroid tests they ran. I am realizing that my endo needed to run more tests than she did. I've just not been feeling great and been doing some reading about further testing that needs to be done. I've had this for over 20 years and still learning.

    Just wanted to add that your thyroid is more important to your body than some people realize. It effects everything.
     
  3. nebby3

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    What kind of doctors are you seeing? I don't have any specific ideas but I would be seeking out specialists at this point. Given that you have one auto-immune disease I think seeing an immunologist who specializes in them would be good.
     
  4. Michelle'sMom

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    Have you had your hormone levels tested? Except for the site issues, my dd experiences everything you describe above. She was dx'd a year ago with PCOS. I'm not saying you have it, only that the symptoms you list can be caused by hormone imbalance.
     
  5. jbmom1b2g

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    reading your symptoms the first thing that popped into my head was thyroid.
     
  6. DavidN

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    Same here. I would get a 2nd opinion from a highly regarded endo.
     
  7. quiltinmom

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    Me too. This may have been more a marketing ploy than anything, but a radio ad I heard once suggested that standard thyroid tests can come back normal and you could still have a thyroid issue. For what it's worth. Sometimes "standard" tests dont' catch everything.

    I also agree with PP that you should seek a specialist in immunology--not just a regular family practice or women's health or whatever.

    Good luck figuring it all out! Wish I could do more.
     
  8. Megnyc

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    Are you on any meds for anxiety or depression? Is it possible at least some of these symptoms are side effects from those?

    How was your latest A1C? I doubt this is the problem but at least some of those symptoms can be caused by consistently high blood sugars.
     
  9. C6H12O6

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    You should get your cortisol levels tested
     
  10. Ti'sMom

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    All the symptoms you've described sound like thyroid symptoms to me. Until I really researched and found out the truth about my thyroid, I just believed what the dr said, "labs were normal". I know better now and have a new dr that actually listens to the symptoms and not just the tsh test. I recommend going to the facebook page THYROID SEXY. There is a ton of info on there, with labs that should be run, what the results mean, and all the different things that can go on. You could read for hours, but I'm sure you'll see yourself in many of the posts. You'll also find that others are suffering right along with you. I'm finally starting to feel "normal" again, but it takes a long time. If it isn't thyroid, there may be other things on there that will answer your questions ie adrenals, pcos, etc. I hope you can find some relief soon. Praying for you!!
     
  11. Joretta

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    My dd was just diagnosed with PCOS and the doctor said start b12 as it will help most with her symptoms, which are similar to your symptoms. I gave one last night no realizing how much energy it would give and she was bouncing all night for the first time and she went teetered low for twelve hours. The doctor did say give it a month to work evenly. She happens to be the wife of our endo. My point is have they checked your b12 level?
     
  12. CaitlynGrisham

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    I will go pick up my results from the place that drew my blood, and I'll post them for you guys. I don't know what any of the numbers mean, to be honest; I am relying on my doctor to be able to read them (that probably isn't such a good idea with my track record of fantastic doctors). :rolleyes:

    I've seen an endocrinologist, a diabetiologist, and several general care practitioners.

    I've not had my hormones tested, outside of the realm of the thyroid hormones. That's a good idea and a good place to go forward from. I'll try doing that next.

    Like it says in my signature, I do have anxiety and depression. However, I was weaned off all of my meds in an attempt to figure out if one of them was causing the problem. I am now five months off of all meds except insulin, and I am still having symptoms; in fact, they're getting worse.

    I was told by a family friend that Cushing's Disease runs in my family, but I have no evidence to support that on paper. However, I'll make a note to have them test my cortisol levels.

    They have not checked my B12 level, but I know that my mom was just diagnosed with hypo-thyroidism and extremely low B12 levels herself. So, that could be coming into play, also.

    Thank you all so much for all of your help with this issue.

    On a side note (and I'm not sure if this is related or not), I am also having really irregular periods. I'll bleed for three weeks and then for six months with nothing. Birth control can't even this out; my doctor prescribed it to me in an attempt to fix whatever is wrong, but it didn't work. It did clear up my face, but that's not really the problem at hand.
     
  13. Michelle'sMom

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    She was on B12 long before the PCOS dx. In June of last year, everything was fine except her testosterone & progesterone levels. Metformin is known to deplete B12, so when she started it a year ago, the gyn (her endo doesn't believe in treating PCOS, which dumbfounds me due to the increase in cardiovascular risk) increased the dose. I couldn't tell any difference in her symptoms until about 6 months after she started birth control pills, although they've brought a whole new batch of problems along with them. Unfortunately, anxiety & depression, along with all the physical symptoms listed above are classic for hormone imbalance. She's due for labs & another ultrasound next month.
     
  14. Michelle'sMom

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    With that new info, I would strongly suggest having your hormone levels checked. I've also been looking into the facebook group mentioned earlier in this thread. There's some interesting info there on thyroid testing that I plan to put to use next month. My thanks to the poster.

    I do hope you get this figured out soon. Your frustration comes across in your posts, & it's more than understandable. Keep pushing for answers.
     
  15. Ali

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    Just tell them to check everything. You have a ton going on and one good blood test on a bunch of stuff is a start and the maybe another full blown test two months later. Plus you need to research and go into your doc with all the stuff on this site plus anything else. Sorry it is hard and you are pretty young. :cwds::cwds:ali
     
  16. Momontherun

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    I would also ask about getting a vit d level checked with the tsh, free t4, t3 and the cortisol level with being reeval. B12 deficiency and anemia could be part of the differential diagnosis too. Good luck.
     
  17. CaitlynGrisham

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    Thanks again!

    I've compiled a list of things that I'm going to tell my doctor(s) to test me for.

    I'm sorry I keep posting about this, but it's going on far too long, and I feel terrible.
     

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