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  • Few weird questions on thyroid post-Grave's disease

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    Old 04-09-2004, 12:02 PM   #1
    Angel77
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    Question Few weird questions on thyroid post-Grave's disease

    I have had thyroid problems since around the age of 14, when I dropped 60lbs in two months without doing anything....but it was left unchecked.

    At 19 I was diagnosed and immediately scheduled for radiation because the symptoms had grown so severe.

    My questions are: Does your hair continue to fall out? Mine has continued this process since before my diagnosis. It's not as thin, but seems to sprout bald spots often. It's also dry.
    ...My TSH varies, but at it's highest (that I'm aware of) was 8.92, but I can't find any information on what a TSH that high can damage. It's now around 1.02 on 150mcg synthroid.
    ...I tried Cytomel because my T3's were low (I have narcolepsy and brain injury also) and I wanted to see if that was my problem before upping the amphetamines for the narcolepsy....it floored me!! I felt like I wasn't take my narcolepsy meds and was so tired I could barely move. I went off after two weeks and took a couple months just to get back to where I was, still tired. Has this happened to anyone else?
    ...My weight is a joke. The only weight I lost was when they put me on the amphetamines for the narcolepsy. But after the first couple months, that stopped. My metabolism seems non-existant. I've come to the conclusion that since my body doesn't know what it's doing, it's saving every calorie for when it does figure it out.
    ...I also don't lose weight w/ exercise. I was walking upto 50 miles a week and not an ounce of fat was lost!

    ...also...how many of you with thyroid problems have any of the following:
    Migraines...Gallbladder problems...fibromyalgia or some other chronic pain problems...sleep disorders...hypermobility syndrome...or any auto-immune type disorders?? Just curious. I've seen a common theme on my narcolepsy board...many of us have thyroid problems. They are actually leaning towards narcolepsy being some type of auto-immune disorder.

    Just curious. Have so many questions, but not enough energy right now to remember it all. Thanks in advance to anyone who can shed light on this for me. Angel
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    Old 04-09-2004, 05:23 PM   #2
    sgc123
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    Re: Few weird questions on thyroid post-Grave's disease

    Angel,

    I have Grave's disease and had severe hair loss also. After treatment, the hair loss did stop. It can take up to six months for hair to stop falling out because it can take that long for the hair that has stopped growing to fall out. However, some people have hair loss problems from the synthroid as well so it will probably be hard to know which is causing your hair loss. I never had actual bald spots, just thinning. It is possible that your hair loss is unrelated to the thyroid altogether.

    As for your other question, I also have migraines. I have heard people talk about a possible connection to other autoimmune diseases before, but I don't think there has been much actual research about it. More like people just discussing and speculating. It would be interesting to know.
    Jill

     
    Old 04-09-2004, 05:37 PM   #3
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    Re: Few weird questions on thyroid post-Grave's disease

    Hi Angel.....have you considered having your Free T3 and Free T4's done? If you have, they should be in the mid-upper range. Sounds as though your T3 is slipping. I don't know what dose you took of the Cytomel, but perhaps you didn't wait out the adjustment period. Lasts anywhere from 1 week to 3 weeks. And did you do a follow up FT3 to check to see where it stopped? Only takes 2 weeks for the amount that you're taking to reach dose level. The T4 takes 6 - 8 weeks......for each adjustment.
    All the things you've listed are thyroid related.....welcome to the club! My sleep pattern is terrible, my hair finally stopped coming out in gobs once my T3 level got higher. All the aches and pains are slowly passing and the migraines are near gone. However, I have found I have a few triggers. Before starting on the Armour 90 mg, I couldn't pick out what a trigger was and what my nightmare-life-with-migraines was. Went through pure hell for 2 years with constant rebounds from migraine medications (which didn't help). I had started menopause and that triggered more disasters. I'm just beginning to feel human again. If I had to work, I'd be in the poorhouse because I'd never make it to work!
    Keep us posted and consider getting those labs done! If your doctor bucks on you......find another......it's that important!!!

     
    Old 04-09-2004, 07:02 PM   #4
    Angel77
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    Re: Few weird questions on thyroid post-Grave's disease

    My doc is awesome! He listens to everything! And it's not with one foot out the door! The last time I was in there I took in a two inch thick stack of research I'd been doing on the combination of thyroid, head injury and narcolepsy. I thought he'd be irritated by the amount of info...but he started scanning through it right there and then asked me if I had more!! WHAT??? Are you kidding? I just gave the man a stack of paper and not only is he willing to read it, he's interested in anything else I can find.

    Now, I had my T3's done about 6 mos ago and that's what made me want to try the cytomel before increasing the amphetamines for the tiredness. I thought it may be related to that. I talked to my doc and he said it's possible that I was converting the synthroid, so we switched. I was on it a little over two weeks and could barely even function. I'm wondering if Armour is different and would work. Does is work on both T3 and T4? I've seen people say they love it.

    At this point I don't know which problem is making me tired or if they're just piggy backing. The narcolepsy has improved a lot since starting my meds, but I'm on a high dose and still unable to drive or work. I am however staying awake during the day most of the time. It got worse after having my second.

    My friend says she notices a difference when I'm on my synthroid, even though I don't notice a difference. She says I think more clearly, make more sense, and have less problems with my memory...don't know, can't remember! lol. I just don't know what's causing what. From what I've been told the brain injury cycles as well and causes fatigue, along with the cognitive defecits I'm still suffering from...let's just say, you add that to the sleep attacks, thyroid and the fact that I'm blonde, it makes for some less than brilliant moments! I've taken to calling my medic alert tag, my idiot tag. My hubby gets mad, but I asked him what else should I call it? When it all kicks in, I'm worse than Forrest Gump on downers. Even my service dog looks at me funny! lol

    I do want to try Armour, but was told that it's harder to keep care of. Something about shipping and refridgeration?? Is it that hard to take care of? What's the process? Has anyone who tried it had an adverse reaction like I did w/ the Cytomel? I can't afford to have it happen again...it takes me too long to recover.

    As for the hair, I guess they're not actual bald spots, but look like Homer hairs. They also have a tendancy to be towards my forehead and then on my crown...it's just more obvious because I have a double crown. It also has left my hair brittle and not very shiny.

    Has anyone who gained weight after radiation or just with low thyroid ever lost it? How did you do it? Why is it so hard, even if the labs say that our levels are good? I don't just take their word for it on the numbers. I have copies of every single record and test. That's one reason I changed docs. My last was a complete jack*** and was even worse once I got the charts. He put down that my appetite was fine or high, an assumption because I'm a chunk. Had he bothered to ask, he'd find that I've gone upto 3 days without eating because I'm either not hungry or just plain too tired to eat. He also managed to quote w/ perfection the only few silly comments I made, leaving out any hint of intelligence.

    I'm just not sure where to go from here. I'll dig out my last labs and see my exact levels and post them. I have been dealing with this for about 7-8 years, but still am a little fuzzy on the blood work. I do know that my T3's were in the lower normal range.

    Thanks for the help and info. I'll holler with the other stuff when I get it. Angel
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    Old 04-10-2004, 05:09 PM   #5
    K9Mom
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    Re: Few weird questions on thyroid post-Grave's disease

    Bald spots on your head could be alopecia areata. With thyroid disease you tend to get an overall thinning of the hair.
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    Old 04-12-2004, 09:33 AM   #6
    opalfire
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    Re: Few weird questions on thyroid post-Grave's disease

    Angel......I'm so sorry to hear that you're still struggling after all these years!
    Please do dig out those last labs and hopefully you will have those Free T3 and Free T4 that is so necessary to gauge how much Armour you need. If you've had totals done instead, they're of not use for gauging the right amount of dosage, or where you really stand as you can only use the free hormones.
    The usual starting dose for Armour is 90 mg. Please split the tablet in half and take one half after breakfast and one half after supper. Always take it in this manner so that your dosage is consistent. This method also keeps you from having those highs and lows associated with thyroid medication.
    No, there are no problems associated with the care of this medication, anymore so than any other. Just be sure to keep it dry.
    Please post your labs! Judy

     
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