Hello ~ I have done SO much research since I found out I have a very overactive thyroid.
5 month history:
I noticed extreme muscle weakness inmy legs and hand tremors around March. I basically blew it off until I had to go to my Dr. for a sinus infection on July 1st. First thing she said was "you have an enlarged thyroid." Surely, not. I said. I have very large tonsils (lol) She gave me antibiotics and sent me for blood draw.
2 weeks later, I have to call and ask about the results. All she tells me is that I'm "very, very, very, very, very (ye, she said it 5 times) hyperthyroid and to see an endo ASAP, whom which she gave me name & number, etc, and said she'd forward my labs.
So, I immediately call and only opening is exactly a month away. fine. I scheduled it, and it will be next Friday the 12th.
A couple of weeks go by and my body starts freaking out. I'll spare the details because they were standard... I went to Urgent Care because I felt I may have been going through thyroid storm. fatigue, confusion, 145 bpm heartrate.
My attending calls for my labwork and is appalled I wasn't told the #'s and that I wasn't put on temporary beta blockers.
MY Free T3 was 24.7
Free T4 was 6.68
TSH was 0.010
I just got these results last week. 1 month later. He puts me on 20mg Propranolol and says to be careful my BP doesn't drop too low. I tell this to my manager and now I can't return to work without proper restrictions from the Dr. *sigh* I call, no one returns my call. I went back to Urgent Care Tuesday, and they decide to admit me again...
So, I tell them, I want new labs and I want to be checked for hemochromatosis, and gimme a work release/restriction. blah blah blah I just got my results this evening in the mail.
negative for hemochromatosis, but now my
Free T3 is 27.75
Free T4 is 7.69
this is all within a month. I've lost 10 lbs. nothing fits me anymore. While this may seem a nice side effect, I'm completely insomniac, can barely eat. my eyes fill heavy, & I'm starting to get dark circles.
Monday I am going to see an acupuncture/accupressure Doctor of Eastern Medicine, and then my Endo on Friday if I'm not dead by then.
is there anything I should be doing? How high can free T3 get before I'm in a crisis situation? I have missed almost 2 weeks of work because first I could not get up. I was shaky, and nervous, and would sleep for 14 hours. Now, I can't fall asleep until 7am and sleep until 4pm.
I'm covered under FMLA, but it doesn't pay. Short term disability next if I have to go through various follow-ups and feeling terrible from meds...
Does anyone have a similar story? what should I expect for my first endo appointment? Am I going to have to fight or argue for tests, alternative treatments, etc?
If you read all this, thank you from the bottom of my heart!!
I'm sorry you're going through this, yet welcome to the board and glad you found us.
As far as I understand you're on betablockers right? good, that will somehow give you some relief. I don't understand why you had to wait a month to see the endo while they knew you were that hyper.
Likely they will put you on blocking therapy and that will ease things down.
I understand very well how hard it is to miss out on work, BUT you need to take care of yourself now first, ok?
ps: in the meantime avoid coffee (caffein), stress and stuff like that.
Hope you can start your treatment soon. hang in there!
The Following User Says Thank You to lisa789 For This Useful Post: Ohura36 (08-07-2011)
When the author makes the statement "affect your thyroid negatively", this refers to the fact that goitrogens lower thyroid hormone levels so, for a person dealing with hyPOthyroidism, it's best to avoid goitrogens. For someone that is hyPER, increasing consumption of goitrogens can be very helpful.
Once your levels get in-range, you'd want to cut back on your consumption of goitrogens but, in the meantime, it can help.
Also, 200mcg acetyl-l-carnitine (an amino acid) has been shown to help with hyper symptoms....I took it at various times throughout my Graves' journey.
Finally, some people have had success with a product called "ThyroSoothe".
Hi, all! I wanted to come back & just give a follow up on my crazy life...
So, my endo is pretty cool, passive, but I appreciate the fact he wasn't quick to ablate my thyroid or push procedures on me. I've been confirmed diagnosed with Graves disease. I was put on methimazole & propranolol, and we just waited. Within 3 months, my free T3 & T4 were back in range. I gained 30lbs and felt like crap. By January my levels had gone up again and I was having crazy symptoms again, this time if stressed, I'd sleep for 26 hours straight without drugs. Turned out I had accidentally been taking a"hair, skin & nails " multi vitamin supplement that had potassium iodide in it! Gah, stupid, stupid me, I thought to myself. But, I know I read the label & I accepted the fact that I missed it... like not finding what you are looking for when it's right in front of your nose.
I got my levels back in range & have been doing pretty well in that arena....
Get this, I started to feel sick the last week in February and wake up on Friday urinating massive amounts of blood... but, didn't feel sick. Naturally, I freak and go to the ever familiar urgent care clinic. Because there is no sign of infection, and xrays looked clear, everyone was convinced I had passed kidney stones. They give me cipro, and percocet and send me on my way.
The next evening I was home chillin, when I start to cough & wheeze. I had only taken the cipro, so I think I'm having an allergic reaction. I call 911 and go to the ER.
They do a CT scan because I'm still passing blood, but write me off as having had an anxiety attack, and "oh, by the way call this urologist... which I do that next Monday. They got me in by Wednesday & the Urologist tells me I don't have stones, I have a massive blockage in my bladder causing hydronephrosis & need surgery, asap.
What the hell? Right?
Then I recall the similar thing happened back in august, shortly after being diagnosed with Graves disease. The only difference then, was that I treated it like a uti, drink massive amounts of water & cranberry pills, go to urgent care & get antibiotics (even though they didnt see infection either, we all agreed it was because of the massive flushing I was doing...)
So, I have surgery called TURBT. The tissue /tumor /blockage was benign. :-)
but, it's been almost a month and I am now having massive kidney pain. I just had a battery of radiology tests and the ultrasound lady said I have a rather large ovarian cyst 5x4cm! gah!
To add insult to injury, she said it was on the ct scans they did prior. Why did nobody tell me!? I'm really starting to hate doctors, but really, I feel like all the pieces of the puzzle are coming together... because my thyroid is still in range.
hmmm, i'm thinking all my plumbing issues were the cause of my initial hypertension, hyperthyroidism, hyperventilating, hyper everything. I am starting to hate that word. lol
also, I just wanted to let people know if you are diagnosed with an autoimmune disease. it's because SOMETHING or many things are out of wack. Your body doesn't know how to fight it anymore, so it starts attacking itself. It really makes so much sense, that I don't get why doctors aren't more investigative. Each specialist only cares about that one area. Like my urologist staring at a tumor on the left side of my bladder and not even caring about an ovarian cyst on the right side that's twice the size of the tumor blocking my ureter... or like my endo never saying "hey, get these other things checked out " when my white blood cell count was high.
It's so frustrating!
I encourage everyone who is having thyroid issues to get everything checked out. Go to 20 doctors if you have to. Research tells you your thyroid is responsible for the metabolism of everything in your body. It doesn't make a bit of sense to me to ablate it or have it removed before checking out every other possible cause.