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  • Diagnosed today, have no idea what's going on...

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    Old 04-13-2012, 11:11 AM   #1
    rachel06
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    Unhappy Diagnosed today, have no idea what's going on...

    I was diagnosed today after months of Doctors "not looking at" my TSH levels. I wound up in the ER in January for what seemed like a panic attack. I started feeling really panicky and I had chest pain and then the tingles down my arms. I went to the ER thinking maybe a problem with my heart but EKG came back fine and the nurse told me, "Well, all your blood tests came back fine." So it was brushed off as anxiety. I continued to feel crappy and wanted to get an xray so I went to my normal doctor and she ordered an xray, everything came back fine with that and I had requested the blood work and EKG be sent to my doctor for review. She was supposed to look at them and call me back, when I received no call back, I called and was told by the nurse that all my blood work looked normal... Then about 2 weeks ago, my tongue swelled up and is still puffy. I went to the doctor and she put me on antibiotics (500mg amox) thinking that my tongue ring was infected. I made her look at my blood tests with me because I just didn't feel right. Everything checked out fine, except my TSH level was <.01. She finally ordered a blood test of TSH, T3 and T4. I got the call today that I have hyperthyroid. My TSH level is now .005 and she said my T4 is 2.2. Now, I know that the TSH is very low but I have no idea what the T4 level is or means or if it's low as well and what this could possibly mean?? She's calling clinics in my area to see if I can get in quickly for more testing? Scans? I have no idea what to expect and I'm scared and I do feel as though I have anxiety and slight depression, which I know can be caused because of the hyperthyroid. Could I have a pituitary problem with these levels? Maybe a pituitary adenoma? Oh, and the day I went to get my blood taken I had woken up with a swollen lymph node so she prescribed a stronger antibiotic (500mg cephalexin) because she still thinks it's an infection, but I read that a swollen lymph node can be because of a tumor? Thinking pituitary tumor? Or am I just being a hypochondriac? I now have terrible constipation and a yeast infection from the antibiotics. Do you think the swollen lymph could be hyperthyroid related? PLEASE HELP!!

     
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    Old 04-15-2012, 01:08 AM   #2
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    Re: Diagnosed today, have no idea what's going on...

    Quote:
    Originally Posted by rachel06 View Post
    Everything checked out fine, except my TSH level was <.01. She finally ordered a blood test of TSH, T3 and T4. I got the call today that I have hyperthyroid. My TSH level is now .005 and she said my T4 is 2.2. Now, I know that the TSH is very low but I have no idea what the T4 level is or means or if it's low as well and what this could possibly mean?? Could I have a pituitary problem with these levels?
    Not an expert on hyperT but your low TSH and high FT4 really do indicate hyperthyroidism (can you please post your labs's reference range for FT4 - with typical US ranges your level would be high). If you had a pituitary issue causing thyroid problems both your TSH and FT4 would be either on the low side (secondary hypoT) or on the high side (secondary hyperT). Ask to have thyroid stimulating antibodies (TSI or TRAb) checked to see if this is an autoimmune issue.

    Last edited by FinnMaid; 04-15-2012 at 01:11 AM.

     
    Old 04-15-2012, 03:39 PM   #3
    rachel06
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    Re: Diagnosed today, have no idea what's going on...

    I actually don't know the ranges that the lab used because I've never seen the paper! And she also never told me my T3 level either so tomorrow I'm going to call her and ask for copies of my blood tests, both from January and April so I can see all of my levels. I don't know if I really trust her wholeheartedly considering I had my blood work sent to her from the hospital back in January yet she must have never looked at until I went in this past month for the swollen tongue. I mean, if my tongue had never swollen I would still not be diagnosed! Makes me worry a little bit. The other thing is I don't have insurance and I know that there's going to be lots of doctors visits and tests and prescriptions from here on out so I was thinking about purchasing independent health insurance, do you think this would be a good idea? Also, they're looking at clinics for me in the area to get these tests done and I don't think that these clinics that deal with tons of people with no insurance are really going to give me the best care or really listen to me. She said I need an endocrinologist but with no insurance a clinic will have to do... I'd much rather go to an actual endocrinologist and I figure it will be worth it in the long run. Agree? Anywho, when I get the copies of my blood work I'll post them here. Thanks for your time!

     
    Old 04-15-2012, 09:39 PM   #4
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    Re: Diagnosed today, have no idea what's going on...

    Quote:
    Originally Posted by rachel06 View Post
    I'd much rather go to an actual endocrinologist and I figure it will be worth it in the long run. Agree? Anywho, when I get the copies of my blood work I'll post them here.
    Well I don't know much about your insurance system (except that you need to have one to get proper treatment) but I do know that an endo may not be the best doc to treat your condition unless you find someone that's not only treating your labs but your symptoms too (we do see a lot of overtreatment of HyperT and undertreatment of hypoT). Looking forward to those other results

    Last edited by FinnMaid; 04-15-2012 at 09:40 PM.

     
    Old 04-18-2012, 01:21 PM   #5
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    Re: Diagnosed today, have no idea what's going on...

    Hi! When I was first hyper and put on meds, my lymph nodes were swollen too. This is normal.The panic and anxiety you feel is thyroid related, so all your worries stem from this. Once your levels come down, you'll feel better.The one thing you have to do is what you're doing, be pro active and get copies of labs. Docs tend to overtreat hyper like Finn said. Don't let them go by tsh but by the "free" levels. Tsh can stay depressed for a long time in people with Graves. As long as you get a doc who knows how to dose (a lot don't, unfortuneatly (sp?),sometimes endos are worse. You sound like you know what you're doing already and that's a good thing, especially while having high hormone levels,sometimes at first, you're a wreck!

    Last edited by Bran'sNana; 04-18-2012 at 01:22 PM.

     
    Old 04-22-2012, 01:59 PM   #6
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    Unhappy Re: Diagnosed today, have no idea what's going on...

    So I finally picked up my medical records and my numbers are:

    TSH- <.005
    Free T4- 2.20
    T3 Uptake 39.5

    There's no ranges on the paperwork but there's a (L) next to the TSH and a (H) next to the T4.

    I have an appointment at a clinic (no insurance) on May 3rd for blood work and then May 10th for the initial appointment. I'm a little weary going to a clinic for all this. I really wish I could afford insurance so I could go to an actual endocrinologist. I just want to start treatment already! I've been suffering since January with these symptoms.. I have palpitations, nervousness, anxiety, breathlessness, fatigue, rapid heartbeat, trembling hands, weight loss (I lost 75 lbs last year without trying, wondering if maybe it had to do with the hyperT, I've lost 12 lbs in the last two months alone), muscle weakness, hair loss, chest pain, heaviness in my chest, and whenever I call my GP they tell me that it's all due to the hyperT. I'm so scared that I'm damaging my heart by not being medicated yet. I know I'm only 26 but I've been a smoker for the past 5 years and it's proving hard to give up. I walk up the stares and my heart races, I stand up out of bed and my heart pounds, my GP told me not to exert myself until they we can figure out the actual cause of of my hyperT is... it just makes me nervous. And I've had different pains in my chest over the last few weeks. I've had an EKG and xray and they both came back normal but is it possible that in this amount of time (about 2 months) that something could have happened? idk.. I had a terrible panic attack yesterday and had to leave work. It was bad..

     
    Old 04-23-2012, 07:03 AM   #7
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    Re: Diagnosed today, have no idea what's going on...

    Yes your tsh flagged as L was for low and your T-4 was H=high. usually docs will put you on a beta blocker until you get on anti- thyroid meds. This will slow down that fast heart rate. Everything you are stating, as far as symptoms of hyper are all normal and I'm sure your heart is fine. The smoking is not good, you should TRY to quit. The nicotine in cigs will make you more hyper feeling. Maybe you could ask for a beta blocker for your symptoms (it only helps symptoms but doesn't lower thyroid hormones) that's what the anti thyroid meds are for. Just try to remain calm, take some slow deep breaths when you feel like this and keep telling yourself these are just symptoms of hyper-t,you are going through what everyone with this did,the anxiety,weight loss,fast heart rate, pains etc.. It's quite scary at first.I was 52 when this happened to me, so i thought I was having a heart attack. I wore a heart monitor, had a stress test and it was all good. It was just the thyroid going crazy! as long as you get on the meds and do regular labs, like every 4-6 weeks at first, you should be okay. sometimes they wait and see if levels go right again, or if the FT3and 4 remain high.They did that with me at first.

     
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