[Kimberly]

#1170603

Hello – Shirley gave you some great things to think about. I just wanted to add that I tend to be a serious type A personality, and it’s easy to get caught up in the trap of thinking that I will either “pass” or “flunk” my lab tests.

However, the reality is that measures such as heart rate, blood pressure, and thyroid hormone levels are just checkpoints to see where we are at a particular point in time — that will help the doctor adjust our treatment plan as needed and get us back to feeling well again.

It’s kind of like the gas gauge on a car — it doesn’t do any good to get upset at your car because the needle is on “E”. That’s just important information that we need to take appropriate action!

Take care — and keep us posted on how things go today.

[sarah]

#1170604

Thank you Kimberly. Your analogy was awesome! I am going to start a journal tonight. But for now, I guess it is update time….

Today was not as horrible as I had worked myself up for. My doctor spent an hour and fifteen minutes with me alone. THAT was awesome. She checked out my reaction to the adhesive and states it looks much like a burn. She does not want to put me on steroids. I don’t think she actually explained why to me. we were talking about so much. Instead I will be mixing cortisone cream with aquaphor and seeing how that does. And benadryl tabs are ok so I will continue that as well.

My heart rate was down. Well, kind of. 154. That is better than 165 but still bad. So she is increasing the propranolol once again. This time to 120mgs per day. She says her goal is to have me down below 90 in a week. Is it bad I laughed out loud at that? I told her good luck. So next week on Tuesday, Wednesday or Thursday I am to go back for a heart rate check. She said for me to just pop in any time. Then the 16th she is going to draw my labs again and see where we stand.

She stated she doesn’t usually treat Grave’s herself. She would prefer me to go back to the endo but I hated him. I told her SHE listens to me. I need that more than anything. I would pay way too much money for someone to spend two minutes tops with me and dismiss every little thing I said. So she’s stuck with me for as long as she can treat me. Maybe that’s selfish on my part but I rarely like a doctor so; I would rather get better than give up.

My temperature was 99.3 My tremors have been really bad today. My blood pressure was better than last time. 138/70 .

I told her today I won’t bargain with her anymore. If she feels I need to be in the hospital I will go. So she told me not yet. She is still waiting for the holter monitor results. I told her given my allergy and the money I paid they probably lost it LOL. It would be my luck. But anyway, the agreement is if I develop a fever, nausea, vomiting, diarrhea, or agitation or swelling in my leg (not my ankles) that I will go immediately to the E.R.

She did mention doing an ultrasound of my thyroid. Because I am self-pay she can do it in her office but there is a wait until at least April it looks like. Maybe later. She says she feels a nodule. I asked her if my absolute neutrophil count being high is any indication of that. I don’t know why I asked that it just kinda came out. She said probably all my labs that aren’t good are thyroid related. So I guess this just is a take it as it comes kind of thing??

Anyway, that’s the jest of my visit. I probably left something out so feel free to ask if you have a question

Thank you all for being so supportive and standing with me through all of this. I can’t even begin to say how much it means to find a post waiting for me. (That might sound tacky but it’s truth)

Sincerely,
Sarah

[snelsen]

#1170605

Sarah, I am very impressed with the doc you are seeing! Tell her that she has compliments all over the place from me! Good for you for telling her that you would like to stay with her. And she will feel much more confident managing your care, now that she does not have to worry about you digging in your heels and not wanting to go to the hospital. She’s concerned, caring and competent! THAT’s what you (and all of us) deserve. Not always what happens, though.
You have come such a long way in your understanding of your health. Yay, you!
Regarding going to the ER, I imagine it is inferred by her, but not stated, that if your heart rate goes up, up, up, you definitely should go to the ER. I don’t think it will, with the increase in propanolol.
I am so sorry about the blisters. They really impact your life! I like the idea of aloe vera/cortisone combination. If the cortisone “stings,” and it might, use the aloe by itself. I speak from my own experience, for I had a boatload of radiation when I had breast cancer, and my skin was an open sore/blister. The aloe was soothing. I think the “tincture of time” (I love this phrase!) is on your side with your blisters. Watch for any signs of infection in the areas.

Yep, I remember the tremors. Don’t like’em.
I am sitting in the kitchen making a killer meal I just fixed-a squash/granny smith apple bisque! Really good homemade garlic bread, a great salad and a glass of red wine. Yum. Then income taxes to mess up the evening.
Shirley

[sarah]

#1170606

I will definitely pass your compliments to her when I see her Shirley. I do like her. Hopefully she will be more secure in caring for me. If nothing else this is a good learning experience for her and I. She likes results NOW so this is a little hard for her I think. I’m the same way though.

I hope this dosage helps on the propranolol. It is kind of crazy because I seem to get a reprieve in the racing for a day or two on an upped dose then it zaps right back where it was. When I say reprieve I mean 140 is the lowest resting. We shall see. I actually went out today afterwards and bought a thing that can check my heart rate at home. And I did buy a notebook so I can start a journal.

The blisters are miserable but I am hoping tonight I find relief for a half way decent night of sleep. I will definitely try the aloe. It should work! I will be hopping with joy if it does and ya’ll will know lol.

I will go to the E.R. for sure if I take this new dosage and my heart rate goes higher than it has been. I promise.

I don’t really understand everything about my health but with the help of reading here; talking with ya’ll and my doctor taking the time to sit and discuss things, I am gaining an understanding. I’m learning anyway.

Yeah, the tremors are shaking my whole body today. Some days it is real bad that I look like a tweaker. Other days it is not that bad. I haven’t figured out why it fluctuates so much. I do miss my handwriting though. Now I could be a doctor it is so bad lol.

Wow your dinner sounds absolutely yummy! I have never had a bisque but I do like squash and apples. I am a horrible cook though.

I think I am going to take your advice from last night and have another cup of tea tonight.

Thank you Shirley for writing to me tonight. It means so much!

Sincerely,
Sarah

*edited for typos..again….seems my hand got stuck on a letterrrrr *

[Jules]

#1170608

One thing about having graves and being on anti thyroid Meds and hospitals you most Likely will get a private room. You immunity is low with all of this.

I became allergic to the MMI Meds and ended up in the hospital because of them.

I wish this disease on no one. It sucks. Knowing that I was not alone by finding this site has helped me get through.

[snelsen]

#1170607

Jules, I sure am sorry that you ended up with an allergy to MMI.
ANd I hate Graves’ as much as you do (and all of us!) I hope you have moved on to treatment and to be “like you were” with Graves. I did not check your other posts to check that out, though.

In my experience, most hospitals have single rooms now. Of course I am sure there are still double rooms, I am not sure if any “wards” are left in this country.

When people are on an ADT, they have additional labs, especially at the beginning, to check liver function, and the other lab is a CBC, (cell blood count) which gives information about red and white blood cells.
The complication of liver and/or decreased white blood cells, and increased chance for infection are very rare.

I guess what I am trying to say, is that it is not a “given” that we have lowered immunity to fight infection, simply because we are on an ATD.
Sarah, I think if you check with your doctor, she is checking this lab. I don’t want you to think that you have yet another problem with decreased immunity, when this is probably not an issue for you.

There are several people on this site who have been on ATD’s for years and years for it was their choice of treatment for their Graves’.

[Bobbi]

#1170609

This disease can make us terribly ill for a while, but it IS treatable. We do have the potential for getting well again.

If the ATDs are not lowering your white cell count, your immunity issues should be normal. It is a rare event that causes them to lower our WBC count. But “being” ill will most definitely lower our immunity whether we are on ATDs or not. Also, “having Graves” does not mean we have lower immunity, so long as the hyperthyroidism is under control.

[lattelover]

#1170610

Hi, I just wanted to wish you the best. My daughter went through a thyroid storm in September 2011. My daughter at that time just turned 20. It was the scariest thing we have ever been through. Her heart also was racing really bad but thank God there is no damage. I just want to say do not be afraid of doing radiation therapy. It has helped her so much now that her heart is not all over the place. She is so much happier being changed to hypo and better medicine. Unfortunately she now just found out she has Lupus also. She has switched to a gluten free diet, less meat , and a lot of quinoa. Her doctor told her to keep up the good work. If anyone needs a good endocrinologist in Cook County She is the best in the world. Her name is Dr. Maria Villano. I hope everything goes well for you. One day at a time!!!

[sarah]

#1170611

Thank you Jules, Shirley, Bobbi, and latte for your words. They are much appreciated.

Actually where I live we do still have a couple county hospitals that I know of that have 4 to 6 beds per room. But the other hospitals around here I think have all gone to private rooms.

As for liver function tests, I have not had those done ever that I know of. I don’t even know what they are called. I have had a cbc. My white cells were high as were my red and my absolute neutrophil count was also high. This was before I started on the ATD. On the 16th my doctor will repeat at least my thyroid labs. I do want her to do a repeat cbc too. Should I ask for a liver function test?

So…….I have some good news to report. My adhesive allergy is itching much less. I have mixed hydrocortisone cream with aquaphor and aloe. It seems to be helping so much!

And guess what!!!!!!! My heart rate as of writing this is (drum roll please) 107! I’m praying it continues to go down and doesn’t decide to show off this time.

Ok I also have an odd question. Have any of you had your neck hurt inside and out, like all the way through? I don’t know if I am just getting a sore throat or what. I don’t have a temp today. But it almost feels as if my thyroid hurts (that sounds dumb now that I look at it but oh well) and yet it also feels inside like the muscles hurt kind of mixed with a sore spot in my throat. Am I making sense? I feel like I’m not explaining it very well. I noticed it with the taking of each ATD but this time it isn’t going away. Maybe it is just a coincidence? Or maybe I am just getting sick.

It sure seems like I get hit with one thing after another.

But hey I had a victory today and I am going to enjoy this moment even if it is just that…a moment. Sometimes a victory is a nudge to keep us going through the hard parts. At least that is my opinion.

I’m glad I had ya’ll to share my victory with. And I’m glad I have ya for the rest of the battles and victories.

Sincerely,
Sarah

[Kimberly]

#1170612

Hello – That’s great news that you are seeing some relief!

The guidelines from the American Thyroid Association and Association of American Endocrinologists do recommend liver function testing:

“Prior to initiating antithyroid drug therapy for GD, we suggest that patients have a baseline complete blood count, including white count with differential, and a liver profile including bilirubin and transaminases.”

Anti-thyroid drugs can in rare cases cause liver issues, but being in a hyperthyroid state in itself can result in abnormal liver enzymes.

There is some controversy as to whether regular monitoring of liver function and WBC function is helpful in early detection of liver/WBC issues. My own doctor does run these tests prior to every visit.

I would suggest contacting your doctor about the soreness in your throat. It could just be inflammation, but you definitely want an expert’s opinion on this. Your doctor might want to run a more recent CBC panel, just to rule out any side effects from the meds. (When a sore throat is due to side effects from the Anti-Thyroid Drugs, it is usually severe and accompanied by a fever…but it’s best to err on the side of caution and at least make sure your doctor knows what is going on).

[sarah]

#1170613

Thank you Kimberly!

I think I will ask my doctor if she would do the liver enzyme test. I haven’t had it done even when I was seeing the endo. So, up until now I never even knew about it.

As for the sore throat, I don’t have a fever and I slept in missing a dose of my ATD. I know…Bad girl:o lol. Well, my throat doesn’t hurt now so I am going to take my ATD and see. I figure if it hurts again after taking it I’m either just losing my mind or something is happening.

Thank you for all the info you give me. It helps a lot. I am saving it and will print it for my doctor seeing as how she is learning too.

I just woke up so I’m going to be bad and hit the coffee maker for a cup of java. I wake so exhausted and I know I sleep but…whew.

Hope you enjoy your day. I will write more later.

Sincerely,
Sarah

[sarah]

#1170614

I had a rough night last night. I got sick once after feeling like I was going to pass out or throw up. My heart rate was 107 so I didn’t feel it was anything to rush off to the hospital for. Thank goodness I only got sick once.

I’m not sure why but I suddenly feel so down about all of this. I’m tired of being sick. I miss having a life. I just don’t see an end to this. I mean yes my heart rate is down. But I feel worse than when it was racing. Boy that sounds crazy.

Anyway, I go for a pulse check tomorrow. I doubt I will get time to talk to my doctor; I don’t get to spend any time with her until the 16th. I wish I was brave enough to say hey can we just do a thyroidectomy and call it good.

I don’t mean to bring anyone here down. I just am wondering if I am the only one who has ever felt this way?

[Kimberly]

#1170615

Hello – Hopefully, you are feeling better this morning! I would mention last night’s issus to your doctor’s office when you go in for the pulse check today.

If you spend some time browsing through the archives of this board, you will see that you are definitely not the only person who is “sick of being sick”! The good news is that things *do* get better once you have selected a treatment option and enough time has passed for you to get your levels back in balance. Most of the folks who get to that point don’t come back to post here — they just move on with their lives. But occasionally, others will take the time to stop by and post a success story…which we love to read!

Surgery is certainly a valid treatment option; there are many posters here who have been very pleased with the results. You can do a search for “surgery” or “thyroidectomy” to read some of their stories.

Surgery does come with risks, though, and it’s not necessarily a “quick fix”. You still need to go through the process of adjusting your dose of replacement hormone following surgery to find the “sweet spot” that will stabilize your levels and get you to feeling well again.

Take care!

[sarah]

#1170616

I’m feeling better at least in the sick stomach department. I will definitely do a search on those other posts. I guess I look at surgery as a more definitive solution. At least then I would know where I am going with this.

I didn’t get to talk to my doctor today. Just had a nurse do a pulse check. Needless to say my heart rate is back up again. I’m so disappointed.

But I am going to hang on to the fact that it can reach below 100. Just another hurdle.

And today I decided I don’t like where I live. I guess I can chalk my emotions up to not having a cycle for three months then getting it. Sorry if tmi. I’m just:(:o:mad::rolleyes:

Anyway thank you for writing to me Kimberly. I’m going to search the posts and read for awhile. I’m sorry for complaining.

[Sube08]

#1170617

Dear Sarah,

I feel a kinship with you, in 2007 I was told I was hyperthyriod as well, my levels were similiar to yours, t3 800 and t4 high as well with no detectible tsh. I was also scheduled for back surgery very soon as well, it was the pre- op blood test at my GP that made the discovery. My heart rate was high and I had many other issues that I was so use to I didn’t give it a second thought and pretty much in denial. I was put on PTU and Beta Blockers for about a month before I had surgery and post-op recovery was very scary, but I made a full recovery.

My dose at the time was 4 50gm of PTU 4 times a day and 2 20gm beta blockers 4 times a day, it took months to see any change but I felt better after I started taking the beta blockers which calm the heart, trimers and such and I’m sure the PTU was working as well. My options were keep taking meds, surgery or RAI.

Now it’s 2012 I’ve been taking the meds ever since only more 6 PTU 3 times a day and 2 beta blocker 3 times a day and I’m just now seeing my levels the most normal they’ve ever been and I feel great. I started out with a good endo but bad at time management, then went to my GP that bless his heart would have done anything for me but I wasn’t really improving. Finally after asking around and searching I found a great Endo that keeps timely appointments, listens, informative and is helping me make the decisision to go through with RAI. That’s why I joined this site for some helpful infor for myself but after reading your stories I thought I could calm you a little by sharing my experience and how long it takes for real improvement especially with levels as high as yours are now and mine was.

It sounds like your having a lot of anxiety about it, which is expected and also makes your condition worse especially the heart rate, I say this because I’ve been there. What I did was talk to my GP about this and he prescribed some anti-anxiety meds, OMG I can’t tell you how much those helped. While I know you’re uninsured, doctors get free samples all the time and I’ve been uninsured before and my doctor has always been most generous with these because he’s a great doctor. I think you have one too and perhaps you could mention this to her and see what you both can work out.

Try some deep breathing excercises or yoga, go to the library and check out a book on Graves and read up on your condition that way you understand it more and can help with your recovery. Also meds like cold pills, caffein, sugar and smoking can cause your heart to race even faster making you more uncomfortable. Actually after taking benedryle like pills can make my heart race, causing more anxiety and heart palpatations. You really need to asess everything you do, eat and drink and how it effects your heart and nerves. I know it’s hard to be calm with so much going on but reading and understanding the condition can make a world of difference. It did for me, be involved and be smart. I just know I can’t go on taking all this medicine but I’m freaked out about RAI but that’s my problem.

Take care,
Sube

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