A Really Rough Day- could use some wisdom

[Amy09]

hey everybody! i've been posting here since my senior year of high school in 2005. this site has provided me with so much comfort. fortunately, the past few years, i have been doing significantly better for the most part and have gone months and months between posting here. since this summer things have gotten really difficult for me though and i could use some words of wisdom right now.

some of y'all may remember me posting this summer about how i studied abroad in london and while i was there i got extremely, extremely sick- sicker than i have ever been in my life. when i came back to america i visited a doctor who ran some blood tests and said that the tests showed i had hyperthyroidism (and it turns out that all the symptoms i had while i was in london matched perfectly with the symptoms of hyperthyroidism.) furthermore, she said that she thought all the eye problems i've been having since i was 14 (SLK and dry eye) were probably connected to hyperthyroidism as well.... i was so relieved to here that there was FINALLY a reason for all my problems, but when i went for a followup a week later she said the blood work was normal and that i should see a specialist.

last week i finally had my appointment with an endocrinologist. she took one look at my old blood work, listened to me talk for less than a couple minutes and said, "You definitely have hyperthyroidism- you are the textbook example. I promise you were are going to get this all figured out and you are going to get better." Then she had me get tons of very, very specific blood work done. Hooray, right?! Wrong! I called the doctor this morning to get the results of my blood work and the blood work was were "barely normal." Therefore, there is still no official diagnosis. All they can do is do a few more tests.

I am so incredibly frustrated!!!! My whole body has been going nuts (specifically my eyes since I was so young) and no doctors can give me a reason for it. I know I'm not crazy, I know how my body feels. I have definitely been diagnosed with SLK and dry eye, and had blood work this summer that said my thyroid was very overactive. I just want a name or a reason for why my body is acting like this. I want to know that I will graduate from college and be able to have a regular full time job and find someone to be in a relationship with and all the other stuff that goes with being a post-grad 20-something knowing and that these health issues are not going to get in my way. I just feel like the older I get the more walls I keep running into when I try to lead a normal, productive life. I apologize for the lengthy post but I'm just having a really, really bad day.

[rhad]

Hello Amy09,

What other symptoms do you have besides dry eye, if you don't mind sharing. I know how you feel, being young and having health problems is the worst thing that can happen, especially because their are alot of important decisions to make at your age. Nobody seems to understand at all and some can be really insensitive. I am a 20 year old male with dry eyes, and I can tell you it is extremely difficult, I have gone to every specialist you can imagine, with no help. they just prescribe anti-depressants, because they don't know how to help. it's hard, but their is always hope. I have alot of other symptoms besides dry eye, that seem to be connected, it seems to be a systematic problem that might be the cause. I wish you the best!

rhad

[indrep]

Amy
My wife has severe rhuematoid arthritis her blood work was negative for years. She did find help and has led a mostly normal wife and helped me raise a fantastic daugther that we didn't think we wouuld ever have. Hang in there and ask for treatment of the symtpoms and worry about blood results later.

[rubyslippers]

The problem with bloodwork is that the range of normal is based on the average person. You can be in the low end of range of normal and for you, you actually do have the disease. I will pray that answers are found.

[Delta]

I do feel for your problems. It sounds like you have definitely some sort of medical reason for way you feel. Did you ask the doctor what barely normal means? Someone mentioned that thyroid can go up and down.

I think barely normal means to me that your body is trying to make up for the deficits but can't quite get there. I would think even if small difference from normal, it can effect you.

[Amy09]

rhad, i don't mind sharing the other symptoms. besides my eye problems:

-i have trouble keeping weight on (i lost over a 10th of my body weight this past june even though i was eating a ton and have still been struggling to gain it back)
-i have problems sleeping all of a sudden
-i have horrible heart palpitations (everytime i have made a visit to the doctor since the summer they haven't been able to get my pulse under 100 beats a minute and had to give me a beta blocker to try to slow my heart rate)
-i had horrible problems w/ diarrhea and vomiting this summer; the stomach issues are still kind of there some days but luckily i haven't been throwing up anymore, knock on wood)
-i have been having problems with always being really hot, especially at night
-i am just altogether more jittery and anxious all of a sudden; my endocrinologist asked me to hold my hands out in front of me and they were shaking.
-i also had a fever for a week in june that i couldn't break even with tylenol... this was while i was have bad problems with sleeping and with my stomach though so i'm not sure if it was just a random symptom that was brought on by other things.

honestly i just feel like the energizer bunny all the time. i feel like my body is going in fast forward, like i am on speed or something, and i don't know how to slow it down.

[dianat]

Hi, Amy.

I'm sorry to see you posting again with such frustration. I only have a few minutes here tonight, but will revisit your post tomorrow. Please know, however, that I can assure you you will absolutely find a good job that is fitting for you and will most definitely find someone with whom you can share your life. You will be loved for you whether you have health issues or not. Would you disregard a man who had a potential thyroid issue?! An eye issue?!! Amy you could be missing limbs and someone would fall in love with you for you.

Okay, now onto the science.

I saw a doc once who had me assess my thyroid using a basal thermometer rather than rely on my very normal blood tests. I do understand how disappointing it is to get normal bloodwork when you've been counting on an explanation. It's a paradox really, isn't it?

At any rate, do an internet search on basal temperature and thyroid. I found a site here after a quick search, http://thyroid.about.com/od/thyroidb.../a/5lies_2.htm but am not sure it's the best site. See what you can find and think about testing yourself using a basal thermometer.

Should you find your results to be within abnormal range, either visit your endocrinologist or see a holistic doctor who will treat you. You need to hold your doctors' feet to the fire on this one...there is something very wrong, and it really does point to your thyroid. Perhaps being retested or switching doctors again. My aunt has had issues with her thyroid and I know how much she suffers when it gets out of wack. It's really horrible. Your unhealthy anxiety about your future has everything to do with this, and you shouldn't have to live like this.

Diana

[Lucy]

Amy my daughter is a Type I (juvenile) diabetic. She was diagnosed in her 20's. A year later, she had the "hyper" thyroid where she ate like a truck driver, had heart palps, shook.....and went from 110 lbs to 87 in 2 weeks. She had to have her thyroid removed. This is just something that fits your descriptions. Lucy

[Amy09]

lucy, i am so sorry about your daughter- i hope she is doing fine now, especially with the diabetes, which i'm sure she is still dealing with! thanks for sharing her experience w/ hyperthyroidism.

diana, thanks for all the advice. trust me, i will definitely be remaining headstrong about finding a solution to all this... if not from my current doctor then from someone else. i know you are right about how i shouldn't be worrying about this. i was seriously just having a very bad day yesterday. i think because my doctor seemed so certain that the blood work was going to show something, i started to think the same thing, and then when i didn't get the answer i wanted to hear i was really upset and in shock, feeling like i was back to square 1.

i just have to keep reminding myself that God is in control and that everything happens for a reason. whatever is meant to happen will happen, even if it is not the answer i am wanting.

[Lucy]

Amy, not to frighten you, but this type of diabetes is insulin dependent. My daughter has been on insulin for a number of years (wears a pump) and is fine. I'm not talking about diabetes you get when you're in your 40's and 50's and overweight. My daughter will die without insulin. It seems though, that your doc would know if this was the case with you. No one at first suspected that she would be diabetic, in her 20's and 110 lbs. I won't write again to you about this.......it's as a FYI. Lucy

[Amy09]

thanks lucy! i think diabetes is pretty unlikely (no family history at all of it) but I will keep it in mind... i'm so thankful for all the advice and thoughtfulness that y'all continuously provide here!

[Guest]

Amy

I think you could put your mind at rest through a good consultation with your GP.

Some simple blood tests can indicate a lot of things and being a either end of a "normal" threshold is sometimes questionable as has already been pointed out.

Something is not right and in my opinion, you should get to the bottom of it sooner rather than later.

If you "feel" something is not right and you are not happy with a diagnosis you have received, I don't recommend doctor shopping but sometimes a second opinion is the best medicine.

Ian

[jannz]

Thyroid Disease

Hi Amy,

There are a couple of (fairly new) websites devoted to (autoimmune) thyroid disease that might be able to help you sort out what's going on. If you haven't already checked into these websites I would encourage you to do so.

http://www.elaine-moore.com/

Elaine Moore - who has written several books / articles about health issues, -- has Graves disease. On her website you can post questions -- I've always found her responses to be very thorough and helpful.

http://www.ahsta.com/
Alternative Health Solutions for Thyroid Autoimmunity has several women with Graves trying LDN (low dose naltrexone) for their hyperthyroidism - they are very knowledgeable about Graves.

I hope you can figure out what's going on....I know that just having an EXPLANATION for your symptoms goes a long way to feeling some relief.

Best wishes,
Jann