# These results have my Endo scared, what do they mean?



## minli (Aug 2, 2011)

My GP screwed up and tried to treat my Graves w/o an Endo until last week when my pulse rate shot up to 160 resting. I got a frantic call from my Endo about an hour ago from her cell telling me to triple my Methimazole immediately, bump my blood work up by two weeks and wants me in her office the week after, I pulled my labs from mdbug, so what does this all mean?

T4,Free(Direct)	*6.22* (0.82-1.77) ng/dL	
TSH	*<0.006* (0.450-4.500) uIU/mL	
Thyroid Stim Immunoglobulin *587* (0-139) 
Triiodothyronine (T3)	*491* (71-180) ng/dL	
Thyroid Peroxidase (TPO) Ab	*319* (0-34) IU/mL

the bolded numbers are mine and ones in parentheses are the normal ranges the lab provided, the Endo is acting pretty freaked out....anyone know why?

btw I'm also on Propranolol for the pulse and Valium for the nerves, which seems to be helping but my Endo stressed she doesn't want me to do pretty much anything other than sit and chill. I'm getting a bit freaked out.


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## peacesells560 (Aug 9, 2011)

Well, I can tell you that you're really bleeping hyper. I can't really blame your endo for being scared, those levels are seriously high.


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## minli (Aug 2, 2011)

well unfortunately I didn't know anything about the thyroid and originally went into my GP for a back problem and he noticed my eyes bulge and found a lump on the left side of my thyroid. Ultrasound and RI uptake and scan later and I was told it was a simple goiter and to come back for a follow up in 6 to 8 months.

2 months later I tried to make an apt since my hair was falling out and I just generally felt terrible, but all they'd say is "6 to 8 months for follow up". It wasn't until I went in for these terrible headaches that the GP discovered I wasn't fibbing about feeling like I was dying all the time since my pulse rate was 160.

THEN I got referred to an Endo. The Endo is not happy and is going to report the GP since he should have referred me as soon as he noted the bulging eyes and diffuse swelling with nodule. It's been a lot of fun


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## sonnyjane (Oct 6, 2011)

minli said:


> well unfortunately I didn't know anything about the thyroid and originally went into my GP for a back problem and he noticed my eyes bulge and found a lump on the left side of my thyroid. Ultrasound and RI uptake and scan later and I was told it was a simple goiter and to come back for a follow up in 6 to 8 months.
> 
> 2 months later I tried to make an apt since my hair was falling out and I just generally felt terrible, but all they'd say is "6 to 8 months for follow up". It wasn't until I went in for these terrible headaches that the GP discovered I wasn't fibbing about feeling like I was dying all the time since my pulse rate was 160.
> 
> THEN I got referred to an Endo. The Endo is not happy and is going to report the GP since he should have referred me as soon as he noted the bulging eyes and diffuse swelling with nodule. It's been a lot of fun


YOWZERS! Your GP is seriously at fault, and I do hope your endo reports him! As the PP said, your numbers are astronomical!!! When is your next endo appointment?


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## webster2 (May 19, 2011)

Wow, you definitely were not treated appropriately. Endo is right, do not do anything strenuous or that raises your pulse. I am glad your endo is on the ball. Take care.


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## minli (Aug 2, 2011)

sonnyjane said:


> YOWZERS! Your GP is seriously at fault, and I do hope your endo reports him! As the PP said, your numbers are astronomical!!! When is your next endo appointment?


I am tripling my Methimazole starting today, getting blood re-drawn in two weeks (December 16th), then meeting with my Endo a week after the blood work (December 23rd).

I'm just scared things are too out of whack for meds (I have the eye disease too so RAI treatment is out) and I'm going to end up losing my thyroid when I shouldn't have had to.

My dad wants me to look into medical malpractice but I just want to focus on getting healthy again.


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## Andros (Aug 26, 2009)

minli said:


> My GP screwed up and tried to treat my Graves w/o an Endo until last week when my pulse rate shot up to 160 resting. I got a frantic call from my Endo about an hour ago from her cell telling me to triple my Methimazole immediately, bump my blood work up by two weeks and wants me in her office the week after, I pulled my labs from mdbug, so what does this all mean?
> 
> T4,Free(Direct)	*6.22* (0.82-1.77) ng/dL
> TSH	*<0.006* (0.450-4.500) uIU/mL
> ...


You are "extremely" hyper (thyrotoxicosis) and if you have any of the symptoms listed below, I advise for you to get to the ER.

Thyroid storm symptoms
http://www.emedicinehealth.com/thyroid_storm/page3_em.htm
http://thyroid.about.com/od/hyperthyroidismgraves/a/thyroidstorm.htm

This is not a good situation and I even wonder if you should be in the hospital under medical care right now.

That said, do not engage in any physical activity; you could have a heart attack or a stroke leading to total vascular collapse. This "is" a very serious situation.

What was your GP doing or not doing that led you to this place?

Very worried.

We do welcome you but sorry for the reason.


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## minli (Aug 2, 2011)

I got proactive and started researching everything I could get my hands on when my GP found the "lump". He said lump, I heard tumor so I kind of freaked out and wanted to know what the hey now was wrong with me.

I'm a child abuse survivor and do not speak with my mother, but found out a few months ago from her sisters on Facebook (of all places right?) that out of four of them, three have had either Graves, Hashimoto's, or cancer of the thyroid. Also found out my mother had pituitary issues when she was my age.

Finding out everything I did , online, I just started to feel like this could be something more than I was being told, but was made to feel like a paranoid nut any time I'd bring it up.


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## Phayah (Nov 4, 2011)

minli said:


> Finding out everything I did , online, I just started to feel like this could be something more than I was being told, but was made to feel like a paranoid nut any time I'd bring it up.


I've gotten this too. When I slow down and think about it, it actually seems like everyone else is a paranoid nut. People get SO torn up when you ask questions.

I was just on the phone w/my bro the other day and he totally flipped, called me a "hypochondriac", and hung up on me. I was left looking at my phone thinking, "What a psycho?!" Its funny how that works. :tongue0013:


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## desrtbloom (May 23, 2010)

It sounds like your doctor is afraid you will go into a thyroid storm because your numbers are through the roof. DO NOT exercise or do anything strenuous. Just relax and rest. I agree with Andros that you might want to go to the ER.


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## Andros (Aug 26, 2009)

minli said:


> I am tripling my Methimazole starting today, getting blood re-drawn in two weeks (December 16th), then meeting with my Endo a week after the blood work (December 23rd).
> 
> I'm just scared things are too out of whack for meds (I have the eye disease too so RAI treatment is out) and I'm going to end up losing my thyroid when I shouldn't have had to.
> 
> My dad wants me to look into medical malpractice but I just want to focus on getting healthy again.


If I could have sued all the docs that fluffed me off; tch!! I had a thyroid storm because I had "many" doctors like your GP. Almost died. You take care of yourself.

Get the anger out; I did. I had a lot of resentments re what happened re non-diagnosis it is counter productive. The thing to do is get well.

We will help you do that best we can.

Surgery is better; this way you can find out if you are cancer-free or not.


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## Andros (Aug 26, 2009)

Phayah said:


> I've gotten this too. When I slow down and think about it, it actually seems like everyone else is a paranoid nut. People get SO torn up when you ask questions.
> 
> I was just on the phone w/my bro the other day and he totally flipped, called me a "hypochondriac", and hung up on me. I was left looking at my phone thinking, "What a psycho?!" Its funny how that works. :tongue0013:


I have divorced many relatives and friends over my own similar experiences. I have all new friends now and they mean the world to me and I to them.

It's a life changing experience; mark my words! And you will profit by it if channeled in the right direction.


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## minli (Aug 2, 2011)

Andros said:


> If I could have sued all the docs that fluffed me off; tch!! I had a thyroid storm because I had "many" doctors like your GP. Almost died. You take care of yourself.
> 
> Get the anger out; I did. I had a lot of resentments re what happened re non-diagnosis it is counter productive. The thing to do is get well.
> 
> ...


I flipped out when the GP told me that he was going to have me admitted into the ICU if we couldn't have gotten into the Endo the next day. I asked if he thought I was in a thyroid storm since my research had turned up the term, but I wasn't really sure what the beginnings looked like. He told me he thought yes that I was starting to storm and it had become a life or death kind of thing. (real sweet of him to be all concerned like since he sat on this for 8 freaking months!!!!!)

The Endo said because I was right to beg for the Valium and got my pulse down to 134 (super low for me at the time) AND that the idiot only did my bonded and not my frees, oh and also just checked my TPO and NOT TSI....oy......we'd get me on Propranolol and Methimazole that day and basically told me "you get a fever, or even just start to feel the way you did again, walk into the ER with your scripts, labs, and start screaming thyroid storm!!"

It's been rough, I have RA and cannot take my meds for it with my meds for the Graves. The Methimazole is kind of kicking my butt, don't know which is doing it, but I pass out three to four hours a day after taking my morning cocktail. For all I know my own body is making me rest 

Just glad I have somewhere to go where people get it, everyone around me keeps telling me they understand, but they really, really don't have a flipping clue.


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## tespad (Oct 30, 2011)

explode so wondering how you are doing now..?


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## minli (Aug 2, 2011)

Well, the Methimazole is working, the latest results were:

T4,Free(Direct)* 3.27*
Thyroid Stim Immunoglobulin	*396*
Triiodothyronine (T3)	*346*
Thyroid Peroxidase (TPO) Ab* 325*

still too high but tons better than they were, we lowered the Methimazole to 20 from 30, TSH is still non-existent. We did a CBC on me and my MCV, MCH, Neutrophils were low and my Lymps were high....dunno what exactly it means, but go in in two weeks to get siphoned again, then apt the week after so I'll get it sorted out.

Doc still says I can't do squat and should be careful around anyone who is sick.

Found out my (now ex GP) hadn't faxed the ultrasound or my RAI U/S results to the Endo as had been requested almost a month ago, so my fiance and I went to the GP's office to be sure they faxed them, first they couldn't find them, then they made me my first ever copy. I was told I had one lump on my left lobe and that my RAI U/S was normal and to come back for retesting in 6 to 8 months.

The ultrasound found several nodules, cysts, and cystic lesions on BOTH lobes with activity actually worse in my RIGHT lobe, but the largest (of two) solid lesions being in my left lobe. It measures 31x16x25mm. The entire lobe itself measures 72x23x31mm. Overall Impression was listed as "Possible Multinodular Goiter". That test was done in April when my resting heart rate was about 85 at at the highest.

Turns out my RAI U/S 4hr was at 74% and 24hr was at 83%, both "markedly high". The impression was listed as "Hyperthyroid Goiter" That was May 6th of this year, back when my resting pulse was barely over 100. My (now ex) GP hand wrote "benign F/U in 6-8 Mos. and I was told the results were normal.

6 months later when I go to the GP for headaches that wouldn't stop my resting pulse was in the 150's and I was slipping fast, THAT was when he decided to do blood work (bonded only at that), and a week later my resting pulse was in the 160's and I was being treated as an emergency by my now wonderful Endo.

So now it's in my Endo's hands. Do we biopsy? Do I go through all the testing all over again since it should have been obvious to any doctor back in MAY I was hyper and needed to be referred to an Endo for treatment ASAP? I'm trying not to get stressed, but the realization that this GP almost killed me has left me pretty angry, confused, and depressed.


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## webster2 (May 19, 2011)

minli said:


> Well, the Methimazole is working, the latest results were:
> 
> T4,Free(Direct)* 3.27*
> Thyroid Stim Immunoglobulin	*396*
> ...


Wow, we are lucky you are still with us. Scary that the GP didn't do anything. Thyroid storm is no picnic nor anything to fool around with. Mine was misdiagnosed.


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## minli (Aug 2, 2011)

definitely, I was officially dxd as out of storm on 12/22 and downgraded to just (hahahahaha) crisis. Which, I'll most likely be at for a while according to my Endo (she wants my T4 to be less than 2 before she'll say I'm out of the woods. I have a long road ahead of me


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## webster2 (May 19, 2011)

Sounds like you have a good endo, they are hard to come by!


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## minli (Aug 2, 2011)

yeah, got very lucky with her and the rest of her team. Total night and day since I got away from my ex GP and started getting this treated


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## Andros (Aug 26, 2009)

minli said:


> definitely, I was officially dxd as out of storm on 12/22 and downgraded to just (hahahahaha) crisis. Which, I'll most likely be at for a while according to my Endo (she wants my T4 to be less than 2 before she'll say I'm out of the woods. I have a long road ahead of me


It may be best for you to just go ahead and have that thyroid yanked. There "are" suspicious nodules. Why fool around. You can get your life back on track.

Hugs,


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## minli (Aug 2, 2011)

Yeah, it's something we're looking in to. Still weighing the pros and cons, plus need to get a new ultrasound done since I've started treatment so we have a better picture of what I'm dealing with


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## webster2 (May 19, 2011)

I feel a lot better since I have had mine out, it took awhile but I feel "normal", whatever that is! It is very nice not to be jittery and a raving lunatic.  Best wishes to you, you have been through the wringer.


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## minli (Aug 2, 2011)

Thank you


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