[sarah]

#1058877

I’m new here; so hello to each of you. I look forward to getting to know all of you.

I found this forum tonight and a lot is weighing on my mind so I thought maybe this might be a great place to bounce some things off people who can relate maybe.

A little background….for many years I have been hyperthyroid. It went untreated until last year. I was only on Tapazole and Propranolol for about 5 months when I couldn’t afford it anymore so I quit taking it. Bad I know.

Well last week I went to my primary care doctor since I can’t afford my endocrinologist. The two of them are working close together to make sure I am taken care of. So my labs came back with a TSH of 0.01 and T4 of 7.2. My T3 was >800.

I am back on Tapazole and Propranolol.

Needless to say Friday when I saw my doctor she was very concerned that I am facing an impending thyroid storm. Note impending. I fall at a 30 on the 25-44 range of impending with 45 being storm.

She suggested I go to the hospital but after much talking she decided she would check in with me tomorrow. I have another appointment.

The only thing on the scale really is my heart rate which has been 145 – 165 resting. And my tremors all over my body. I’m really tired all the time but all of this is something I have dealt with for awhile now. Hiccup burps are new but I don’t think those are thyroid related. Are they?

I am suppose to fly out of state on Wednesday. Is there really anything anyone can do for me before I hit the 45 mark? Should I really be that concerned?

I know probably no one can answer that for me but I’m really curious if any hospital does anything “before the storm hits”. So that is my real question. Do they?

I’m allergic to iodine so I’m wondering if it is even worth it.

I also am wondering if anyone ever has felt worse before they get better when taking Tapazole. I felt achy on the first dose; kind of like the flu only no nausea and vomiting; just that achy feeling with every dose.

Rereading this I wonder if I sound weird. I hope I don’t. I just really don’t want to look stupid or make the wrong choice.

Any opinions would be appreciated.

Thanks

[Kimberly]

#1170589

Hello – Before surgery, patients can be given potassium iodide, which *temporarily* shuts down thyroid hormone production and reduces the risk of a thyroid storm occurring during surgery.

However, to my knowledge, this is not given as a “preventive” measure for patients who are not immediately scheduled for surgery. Instead, the goal is to get your thyroid hormone levels and your heart rate back in to the “normal” range. (Which is what the Tapazole and beta blocker are designed to do).

We’re just fellow patients here, so it would be a good idea to ask your doc if he/she is concerned about your upcoming travel plans. Let us know what you find out — I’m sure others here would be interested in this as well.

Take care!

[snelsen]

#1170590

Hi Sarah, I am glad you wrote today, and that you have an appointment tomorrow. I am not familiar with the scale you mentioned at all. I am another patient who has Graves’.

But the fact that your resting heart rate is that fast, is quite concerning. That is quite hard on your poor heart for any length of time. I have worked an an RN in cardiology for many years. This is something we would definitely page the doctor about. The goal would be to slow the heart rate as soon as possible, in the hospital setting. So it seems that you have a very good doc, who wants to see you again soon. She’ll want to see if the beta blocker is helping to decrease your heart rate. You can help her a lot by checking your heart rate several times a day. Before you get up in the morning, then perhaps every two hours, just so you can report this information to her.

The big reason for taking those drugs are to decrease the amount of thyroid hormone, and to slow your heart rate. The propanolol is the drug that will slow your heart rate. You do seem to have untreated hyperthyroidism (Graves’) and that can be dangerous.
Regarding your trip, be sure to tell your doctor of your plan to fly on Wednesday.
Do write again today after your appointment, tell us how you are how you are feeling, and what the doctor said. I am so glad you have health insurance again.
Shirley

[sarah]

#1170591

Thank you both for your replies.

I had my doctor visit today. I am currently wearing a 24 hr holter monitor. She is hoping to get an idea of what else is happening with my heart since I have been having random episodes of other things besides sinus tachy possibly. Anyway we are seeing.

I don’t have health insurance but I decided the best thing to do with money I inherited is take care of this. So even though it isn’t alot maybe it is enough to get me better. We shall see.

As of today my doctor would prefer I not fly because she does not want something happening with me on the plane. She is leaving the final decision up to me though. I really don’t know what I feel at this point. I am tempted to count my ticket as a loss and just stay home. I guess I will see what she says tomorrow when this holter comes off.

The good thing is my doctor does not seem as worried about me as she did friday. She made me promise I would go to the E.R if I have any of the symptoms she listed for me. I promised so we are good. She really does care.

I feel very exhausted today but that is nothing new. I feel like I am always running a race even when I am sitting still. So much of this has just become such a part of my life that I sometimes forget it isn’t normal. sounds kind of crazy saying that.

I will just be glad to feel better. I guess I am at the point where I’m sick of feeling sick. So whatever it takes….no matter how scary.

At least now I know I am not alone…I have you all here. And that means a lot.

I will update tomorrow ty all for caring. and for letting me ramble

[NLBatten]

#1170592

Sarah, it is interesting that you say you feel like you are running a race. That is exactly what my dr said to me as to why I am so tired and my resting heart rate is nowhere near what yours is. Imagine, if you were exercising, that is likely where heart rate would be on a healthy person. Don’t know if that helps you, but it made me feel better knowing there was a reason I was tired and not just being lazy or feeling sorry for myself.

Try to not make a decision tonigth and wait and see what she says tomorrow. If it were me, I don’t think I would fly, but that’s just because my dr saw me right before I was about to go out of town. (I had a panic attack which really made my heart race.) So what she did was run another TSH, see where we were and luckily mine wasn’t that bad, so she felt safe with me traveling and just told me what symptoms to watch for. If you both decide it is best not to go and you are concerned about losing the ticket, see if your dr will give you a written medical excuse not to fly then call the airline and see if you can get some relief on the ticket. At least they may just give you full credit to take the flight another time instead of charging you the change fee. It’s worth a try.

[snelsen]

#1170593

Your doctor sounds very competent and super nice. I am happy for you. My thought is the same as yours. I am sorry about the timing, but probably you should stay home, finish the 24 hour Holter. Those things take a few days to read, for they have reams and reams of paper to carefully read.

I do agree that you may have a good chance to get a credit for your ticket. Do get the letter from your doc. The airlines are charging for calls now, I think. YOu can explore this online, but you may need to speak to someone.
I am really sorry about the travel plans. But I do believe staying home is the right decision. You might not sleep as well tonight, the Holter is kind of a pain, but prop pillows, and you’ll do fine, hope you do get a good night of sleep!
So glad you are getting good care. It is probably a good use of your inheritance.
Shirley

[sarah]

#1170594

Thank you both

Yes I am discovering the holter is a pain as I sit here itching lol. I cant imagine sleeping with it but I will try. I kind of laugh because my doctor spoke of a longer monitor. I can’t imagine!

I was able to push the holter button once today. I probably should have more than that but I have lived with this so long that, like I said, it seems normal.

Who knows maybe they will find this is just all my thyroid. I can hope. I’m worried I have had such a high heart rate for so long that it has done damage.

Anyway, I am taking my meds and just waiting.

I don’t know if I will go on this trip or not. It won’t be a taxing trip but I will see what my doctor says. I would prefer a straight yes or no from her. Rather than a “what do you want to do”. Maybe I am weird but sometimes decisions are not so easy for me. I go back and forth on so many things.

I also was wondering if anyone has ever applied for disability for Grave’s; if anyone has an experience with that

I’m really glad to have this forum to share thoughts no matter how redundant or rambling I may get. It is nice to meet people who share something similar. I have felt very alone for so long.

I thank you for listening to me and talking with me. I really do appreciate it more than words can say.

Sincerely,
Sarah

[Kimberly]

#1170595

Hello – The process of filing for Disability is very bureaucratic and very time-consuming. Getting a claim through for Graves’ disease can be very challenging, as it’s difficult to *quantify* the symptoms. Another challenge with Graves’ is that the reviewers will look at whether you can do ANY job – not just your current job. Also, if you are currently working, that will result in an automatic denial.

If you do decide to start this process, it’s best to have an experienced disability attorney on your side to guide you through this process. Here is a site that offers attorney referrals: http://www.nosscr.org/ Keep in mind that by law, a disability attorney cannot charge you until your case is settled, although they *can* bill for reimbursement for reasonable expenses such as photocopying medical records.

(Note on links: if you click directly on the above link, you will need to use your browser’s “back” button to return to the boards after viewing. As an alternative, you can right-click the link and open it in a new tab or new window).

Hope this helps!

[sarah]

#1170596

Thank you! that helped tremendously!

[sarah]

#1170597

Just an update:

I turned the holter monitor in today. I discovered that all the itching I was having is because I am allergic to the adhesive. Just what I need huh? I was politely informed that I should have asked for sensitive stickers. Like I would have known to:rolleyes:. so anyway I have five very raised welts now that itch like crazy had have tiny bubbles intermingled with them. Sorry if that was tmi.

I stopped by my doctor’s office rather than call her because I was having trouble scheduling a follow up. Plus I felt worse today. Needless to say the results aren’t back so I’m not flying out tomorrow on my trip.

I’m kind of sad about that and disappointed but she had a good point when she asked me if I really felt like running through the airport. I told her no. She still feels I would benefit from hospitalization but she agreed I don’t need another monitor over those welts. Yikes. I can’t imagine.

So I return to see her on Friday. At that point if she says go to the hospital I won’t bargain with her anymore. I will just do it.

Is anyone else out there afraid of hospitals? Or am I just weird because I do all I can to stay away from them? It’s ok to say I’m weird. lol

So that’s where I am at.

Ty all for listening to me.

[snelsen]

#1170598

Oh Sarah, I am so darn sorry about the EKG leads. Frequently, when a person has a quick EKG, the sticky things are not on long enough for you or anyone else to realize there was a sensitivity or allergy. Darn, I am sorry. Benedryl ointment might help you with the itching. You did not need what the technician said to you. It would have been much nicer if you had received some compassion about the skin issue. You probably won’t see that person again, and it is not worth the energy to pursue teaching him/her a small lesson in caring and understanding. Sometimes these folks assume that you are an old hat all all this stuff. Ok, enough of that.

I’d like to suggest to you that if you do go to the hospital, you can tell people (or show them!) of your allergy. There are non allergenic sticky pads.
And, they can put them in a slightly different place, probably.

Your flight. that is a good idea, for your doc to ask you if you really FELT LIKE scrambling all over airports, and dealing with the stress and uncertainty that air travel can bring. Better later, when you feel good and are well.

When you go back on Friday, the rest of the labs will be back, and maybe a preliminary reading on your HOlter. If she is still interested in admitting you, after your Friday visit, think of it this way. You will be safe (as opposed to deciding to go to an ER over the weekend, which guarantees a long wait, being seen by someone who has not seen you before, and possibly a decision to admit you, and if it is like most hospitals, you will sit forever in the ER while they hunt for a bed. Weekends are not a favored time to have things run smoothly. Planned admissions are much better. If you need to go.

Certainly do ask her why she wants to admit you, why she is concerned.
The more you understand, the more you “get it,” the less anxious you will be. Remember, you really feel like crap, in addition to having a rapid heart rate.
We want you to get better as fast as you can, (nothing is fast with Graves’, though I gotta say) and not be home if you really should not be there.

Having said that, I don’t know the distances of anything, or car arrangement and all that stuff, but it might be a good idea for you to show up at the doctor’ office with stuff for an overnight stay, if that would make your life simpler. TAke your computer, toothbrush, books, etc. Now, having said all this, maybe you won’t have to be admitted. It is entirely possible your meds will have kicked in given these couple more days. IF your heart rate is 160 ir so, I think you should not be at home. Keep track of it now and then now that your Holter is gone (thank goodness.)

After all I have said above, no no and NO you are not weird by not wanting to go the the hospital. You are super normal.

For the welts, sometimes cold feels good, and calms them down. Itching as as bad as pain, it is just a different kind.
Keep writing! I had had a lot of help from this board. One of these days, you will be writing to help someone else-and you’ll be great!
Shirley

[sarah]

#1170599

Thank you Shirley for all of your kind words to me. I cannot even begin to tell you how much better they make me feel

Yeah these welts (hives) are blistering. It’s pretty miserable. I’m doing all I can to keep my mind off of it. I was a little angry, I must admit, when I got to thinking about the fact I told the tech I was allergic to latex including latex bandaids when she asked if I was allergic to adhesives. I didn’t have the blisters until after the doctor saw me. My doctor saw the welts but they didnt appear this bad. I will be glad when these are gone! But you are right, it’s not worth the energy…thank you for saying that. I nodded in agreement when I read your words.

The only issue with my doctor and being admitted is she admits through the e.r. She has doctors who round for her so once I’m there I’m in someone elses hands. Weekends are definitely not the time to do this but I see her at 1pm so maybe I will be the rush if that is what she chooses to do. I really like her. I don’t care much for her rounding docs though. But I just want to feel better so it’s worth it.

I will definitely take my computer and an overnight bag. Thank you for suggesting that as I hadn’t even thought of it.

I agree with you that if my heart rate is still 160 or over I don’t need to be at home. At the same time I am so used to it that I don’t stop and think that it isn’t good for me. It is great to have things put into perspective. I get so consumed that my thoughts get clouded so thank you for the perspective too

Thank you for telling me I am super normal in regards to the hospital fears.

I really do appreciate you taking the time to encourage me and talk to me. I look forward to some day being able to be a beacon of hope to someone else.

Thanks again Shirley!

Sincerely,
Sarah

[sarah]

#1170600

I’m sitting here worrying about my doctor appointment tomorrow. I don’t think I have ever been this stressed out over an appointment in my life. Maybe it’s because my blood pressure tonight is still high. 168/71. I’m so afraid she’s going to be angry with me. I have taken my meds as she has prescribed them. Yet nothing feels better. She has upped my dosage three times in the last week.

On top of all this, I look at my adhesive allergy and think it won’t ever get better. I know it will. I guess I am just having one of those nights.

I feel alone and defeated tonight.

Tomorrow will be a new day. Hope it is a good one.

Sorry just needed to put my thoughts to words.

[snelsen]

#1170601

Sarah, she will not be angry with you. Not at all. If anything, she is worried about you, I think. Here is a helpful hint to know for the rest of your life when you get blood draws and lab work done. Unless it is fasting, which is rare, DRINK,DRINK AND DRINK! Then your vascular bed (basically your veins) will be nice and hydrated and easy to find and easy to draw blood from. I have poked people for most of my working life,and this is the thing that has helped people a lot. (Except for surgery of course. And those guidelines are changing now, too.)

If your labs in in the morning, all the more reason to drink, for we have been basically fasting all night. That is why we call it breakfast, meaning breaking the fast. Interesting, huh?

Of course you are having one of those nightS! That itching can drive you crazy. I am so sorry. You have a REAL allergy to the leads, not just a sensitivity. YOu might try a benedryl tab, too. I am a patient like you, but most people know that benedryl can help itching.

If she has been increasing your ATD’s, it may not help your BP that much, maybe she will increase your beta blocker. How’s your heart rate?
Sure look forward to hearing from you tomorrow!
Try to relax, have a cup of calming tea, and I hope you get some sleep
Shirley

[sarah]

#1170602

Thank you for the helpful hint Shirley. I will definitely keep that in mind.

I know my doctor has said she is worried about me. I just worry she will reach a point she can’t help me. Maybe I am too much trouble. I feel that way tonight.

Yeah this itching is getting the best of me. A friend of mine says I look like I’ve been burned. It’s crazy. I have tried benadryl tabs. I can’t say it helps but I’ve noticed ice does for a little while. Kind of hard to hold five ice things on you at once so it’s a catch 22. But I am going to conquer this too!

She has not increased my ATD as of yet. I take 30 mg of Tapazole a day. She already has increased my beta blocker to 80 mg a day.

My heart rate is getting better – IF I lay down and don’t move at all for several hours. I can get it down to 100-120. But sitting up, standing, “Living”, it is pushing 160 and up.:rolleyes: I just don’t get it. I can’t stay in bed forever. Sometimes it beats so hard and fast I can’t even tell you the rate.

Maybe I can lay on the little couch in the waiting room for an hour before she calls me in;). Then she will be like yay look at your heart rate lol.

*sighs* I know I can’t do that but boy oh boy sometimes I wish. Thank you for asking about my heart rate.

Thank you too for being there. Your words helped me not feel so alone tonight. I’m taking your advice…gonna grab a cup of tea and relax.

I will update tomorrow.

Ty,
Sarah

*edited for typos*

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