Another Newly Diagnosed n Krazy

[KrazyThyroid]

Hi all,

This is my first time posting, will try to be brief. Started getting sick back a couple days before Halloween with sinus/sore throat. By a couple days after I gave in and went to the Dr.. First time in 3 yrs that I had seen one so I thought that was pretty amazing. From there everything has become Krazy !!! I informed them as I do all Drs for years now that I am allergic to Penicillin and Codeine. Also had swelling and knot on my chin that she said she thought was staph. She gave me two antibiotics and prednisone. Started taking them that afternoon which was on Friday. By the time I went to bed on Saturday night I started getting a rash on my face. I started reading up on the antibiotics I was given and sure enough one of them said DO NOT TAKE THIS MEDICATION IF YOU HAVE HAD AN ALLERGIC REACTION TO PENICLLIN ETC. ETC. so I stopped taking it immediately. On Sunday morning I awoke with my face still red along with my neck and chest now. I called into the office which was closed but gave the option to speak to a triage nurse, which I did. She informed me that I needed to be in an ER within the next 4 hrs. No problem off I go. It was there that everything went crazy. I did'nt feel good but I was hanging in like a trooper. In the triage room the nurse took my vitals, immediately grabbed the phone, said something and turned to me and said they were coming to get me right then. I was feeling a little nervous at this point not knowing what just happened or why. Well they slapped me into a bed, connected me to every monitor known to man, started iv etc., then was told that my heart was going to have to be stopped and restarted no choice in the matter. WHOA !! DO WHAT ?? It took them 6 times of stopping/restarting to get my bloodpressure & heart rate under control. It was totally crazy. I was really scared to say the least which did'nt help matters I'm sure. After a while the Dr. came in and asked if I had ever had Thyroid problems. I informed him that to my knowledge I hadn't. Well, he says...you do , hyperactive/graves. From that point I was told that I was in a life threatening situation and had to get into a Endo. ASAP !! which despite no insurance and just losing my job I have done. The Endo. says that I am not out of the woods yet but headed in the direction to get there. He now has me taking PTU 300mg a day , Propranolol 120mg a day and a couple of days ago added Hydrochorot 12.5 mg per day. I had blood work done today and set to go back to see him next week.

Now questions....
Do these medication levels seem high ? Is it normal to be taking this much to begin with ?
What are the life threatening qualities with this disease ? How serious ? Do's and don'ts ?

Although I do feel somewhat better I have days that I feel like a kid and the next day it's like don't look at me because I'll rip your head off !!! Is this normal ? And I don't sleep, any suggestions there ?

Sorry this turned out not so brief. Guess I'm anxious with a lot on my mind, should have saved some for another day but sure I will have plenty more.

Thank you to anyone that can point me in the direction of finding out answers and what to expect.

God Bless you all ! Hugs

KrazyThyroid

[NastyHashi]

What???????

That is an insane story!

If I have it straight, you had no thyroid symptoms and only went to the ER cause your doctor accidentally dosed you with something you were allergic to?

And then with no symptoms in the ER they tell you you have a life threatening problem? That is insane.

I must know more. I've been managing boards like these for a long time and have never heard such a story.

Did you ask questions? Get a copy of your labs? What were your vitals that they immediately made the diagnosis that your situation was life threatening?

Obviously it sounds like Graves' or Thyroid Storm but if you were that bad, I would imagine you would have some really, really bad symptoms, like heart pounding out of your chest, missed beats, sweats, dizzy, puking, fever, eyes cant focus, leg pain, shaky, panic attacks, etc.....you had nothing?

You really need to get a copy of your labs from the ER and Endo and find out exactly what is going on with you.

You said they actually stopped and restarted your heart a bunch of times to try to get your rhythm back? I've never heard of that either.

You need to fill in some more of the details. This is interesting and I personally would love to know more. Your numbers must have been absolutely through the roof for that kind of action. I'm surprised they didn't pull your thyroid out right then and there. Do you have any lab numbers? T3? T4? Free T3, Free T4? Age? Sex? Did you lose a lot of weight?

[GD Women]

Sounds like you had a thyroid storm. PTU is one of two agents that decrease thyroid hormone synthesis and are usually prescribed in fairly high doses. Beta blockers such as propranolol (Inderal, Inderal LA) can help to control the heart rate, and intravenous steroids may be used to help support the circulation.

<What are the life threatening qualities with this disease ? How serious ? Do's and don'ts ?>

Once your storm is corrected they will offer you permanent treatment. Probably two out of the three offered and with your thyroid storm history, they may only offer you one which would be surgery to remove the thyroid. The other would be RAI. Regardless, the two have the same end results, hypothyroidism with thyroid hormone supplements for life.

Earlier in this century, the mortality of thyroid storm approached 100%. However, now with the use of aggressive therapy as described above, the death rate from thyroid storm is less than 20%.

Once treated and you follow doctors instructions, take meds, and be tested on a regular bases, there is no life threatening or serious issues.

There is a lot of do's and don'ts regarding taking meds. There should be instructions that come with your prescription bottle of pills.

I think it would be better for you to ask questions as you progress into each course of this disease and treatment.

What an experience! You are a brave women hanging in there like you did. Must have been pretty scary. My heart and prayers goes out to you.

[KrazyThyroid]

Thank you for your responses. I can elaborate more on the situation but will have to do so tomorrow. I am having some computer problems tonight and tired of fighting with it.

Hugs, sweet dreams n prayers to all.

KrazyThyroid

[KrazyThyroid]

G'mornin,

I agree with you Nasty, mine is a pretty insane story, sad but true. To recap something....when the ER Dr asked me if I had had any thyroid problems I said to my knowledge I hadn't. Never did I think of my thyroid. Were there some symptoms there ? Sure there was but I did'nt realize it. Things that I noticed in passing through time but never anything that stood up and said hey you better see a Dr. about this. I've been relatively small/thin my entire life so the weight loss never really concerned me. It was pretty much normal that I would lose a few lbs when I started my seasonal job. My skin was dry and cracked on my fingers but that was nothing to me as I have battled eczema since my kids were small. The heart rate was high from time to time but I'm always on the go busy busy.

I did go into the ER because of the reaction to the antibiotic. I was even going to drive myself there as I did'nt feel that bad. The reason the nurse sprung into action in the triage room was because of the blood pressure and heart rate. I do not know what they were right then but when I was on the table it was 200 something/over 100 something, with the heart rate at one time being 210 . I can't remember every little detail as I was kind of foggy.
I did ask the nurse just to be sure that I counted right about how many times they stopped my heart and yes it was a total of 6 times. I seem to have a very stubborn body that matches my stubborn personality.
My b/f daughter in law was there with me in fact had ended up driving me there. When things went nuts in the triage room I asked her to go back with me because I was not sure what was going on. She was My Angel !!! Funny thing about her being there is that she herself has gone through the Hyper/Graves. RAI 2x, then finally surgery a yr ago. She is doing much better now and looks much healthier. What are the chances of she and I both ? Made for a family bonding moment, lol. I asked the Endo how I could have missed all of this ? He said that some people are just stronger than other and keep pushing forward, then he added or STUBBORN, lol, which my b/f agreed with him on.

As for labs all of that still confuses me but I will get a copy when I go in to see him next Friday. I remember the ER Dr. telling me that (now I may get this backwards) my TSH levels were off the charts, undetectable. Then in setting up with the Endo she said they were "0". Did he mean off the charts as in low ? It sounded to me like something would be high. As I said it all confuses me right now as I don't know what I am dealing with.

Hope this makes better sense for you. If not just please bare with me I'll get it all in order one of these days. I am so happy to have found this board and looking forward to getting to know everyone.

Hugs n Happy Day to All.

Krazy

[NastyHashi]

Yes, he was talking about TSH. TSH (thyroid Stimulating Hormone) is one of those reverse number deals - LOW means more hormone is in your system and High indicates HypOthyroid - slow and sluggish. I go from hypo to hyper and my TSH was 14. It should be usually around .7 - 1.8 in most normal individuals. A ZERO or undetectable TSH means your body was pumping out a lot of hormone but because it only goes to zero and not below, you need to know what your Total T4, Free T4, Total T3 and Free T3 numbers were. Those numbers were all pretty high I am sure and I am curious just how high it was to raise your heart rate that much - those are the really important numbers. If you get nothing else from your docs with regards to labs, try to obtain those 4 lab values so you have something to compare to when you start getting "fixed".

See the info about labs here:

http://www.hateshopping.com/labs.html

Man, what a story. You are lucky your doc gave you the wrong antibiotics it seems....almost like divine intervention. :eek:

[KrazyThyroid]

Thank you for the info. your help means a lot in this scarey Thyroid world. I will try to obtain the results when I go in next week.

In the meantime I'm trying to behave myself which is hard in itself, setting my alarm for meds so that I don't forget and trying to live life without too much worry. I am a pretty tough lil thing and refuse to let all this get me down. I know they say it's life threatening but I'm ornery enough to threaten right back !!

Hugs n prayers !!

[sharris123]

It is strange how much comfort I find in hearing other peoples stories. My alarm will go off in about half an hour. It is scary! and its on my mind constantly. I have to play red light green light at intersections and really concentrate on if I can go or do I have to stop! I hope you have good support :o) take care!