[sarah]

#1170618

Thank you for writing to me Sube.

I definitely need to learn all I can. My anxiety level is not terrible but I do have my moments. Mostly I am just disappointed because it seems like nothing is working. If it does it doesn’t help for long.

I would be terrified of RAI. I don’t blame you at all for feeling that way.

I have never been through that and can’t because I am allergic to Iodine. But I do have a listening ear if you ever need one.

Thank you for sharing your story with me. I feel so alone and then I come here and find I am not as alone as I feel.

I am sorry you have to go through this too.

[RebeccaJT]

#1170619

Sarah

Just to wish you well and to chime in with others. I really identify with your story but you sound like you have a kind, caring and competent doctor. I was on ATDs for a long time and I wish now I’d taken the surgery route much, much, much sooner as chances of remission with Graves are low, and my thyroid was so badly damaged and destroyed and swollen and inflamed it was beyond hope of repair.

I did get a lot of pain in my neck – if you imagine, your antibodies are like an invading army that are attacking your thyroid. So no matter what your heart rate, or your thyroid blood levels, those pesky antibodies are still attacking. That can cause inflammation and swelling in your thyroid and can cause you pain. Your doctor is already on the case I think, as you mentioned you are having an ultrasound next month.

In my case I also had thyroid cancer (which is eminently treatable I might add) and my doctor told me that the Graves disease and other autoimmune thyroid diseases I had would, left untreated, have killed me far sooner than the cancer! I don’t say that to scare you but to help you perhaps see that you are really, really very poorly – Graves disease at the level you are experiencing it is a very serious illness and you deserve all the care and attention you need to get better.

Without re-reading your whole thread I can’t remember if you’ve had antibody tests to check for Graves and Hashitmotos thyroiditis? I had something called Hashitoxicosis as well as Graves which means my problem couldn’t be controlled with drugs and I needed surgery – my thyroid had gone completely beserk and was spitting out hormones of its own accord despite a hammering with ATDs. If I had known this sooner I’d have made different decisions. An ultrasound and a full screen of Graves and Hashis antibodies would have made this clear.

Also the inflammation of your thyroid can cause all sorts of symptoms independent of your blood results, so this again can make you feel ill. My thyroid surgeon said that 70% of symptoms are caused by the inflammation in the thyroid, this means you can get all kinds of confusing symptoms even when your blood tests are back in normal ranges. This is when less competent doctors start blaming the patient rather than putting their thinking caps on!

Finally, our bodies don’t like our hormones being messed around with and for people like us, with very high and toxic levels it’s like being in a 20 tonne truck, going 100mph and then suddenly slamming on the brakes. You can imagine the hiss, and burning rubber, and sudden, grinding halt. That’s what’s going on in your body, as you screech to a halt – your brain chemistry and body chemistry will be all over the place. I felt very weird on ATDs – so that’s normal. Some days I just went to bed.

Sorry, I’ve written you an essay. But I just wanted to say please give yourself huge, huge, huge doses of love and nurturing, you are very ill, you deserve special care and attention. As others have said, there is no wrong way to do this, that’d be like telling someone with kidney failure or heart disease to pull themselves together. Everything you are going through is part of the illness, and it’s all allowed. This is an important time.

Take good care,

Best wishes

Rebecca
x

[sarah]

#1170620

I can’t even begin to tell you how much your message means to me Rebecca. It means so much. Thank you for sharing that with me. It was a perfect time considering today is a really really bad day for me.

I’m not even in a good place to even share what is going on right now. Maybe later. I’m just bad today. But I wanted to thank you. Your analogy of the truck is so so right on. I’m sorry you had to go through all that but I’m glad you are here to share your journey with me.

I have not had the antibody tests. I don’t think my doctor knows to do that. I really am thinking about asking her. I have been under the assumption they are expensive for self pay though. So it will all depend.

I come in here on bad days and reread the notes of encouragement. I will definitely be reading yours often.

Thanks again.

[sarah]

#1170621

I have a question that I have been wanting to ask. Hopefully You won’t think I have lost my mind.

Have any of you experienced something like…your thyroid gets big; you feel like crud one night or two and then people tell you your thyroid looks smaller? Then it starts getting larger again? It doesn’t go away mind you; it just waxes and wanes.

I’m curious because I stopped by to see my dr yesterday and she said it looks like it is smaller. Then this morning my Mom says wow your neck looks big again.

My dr was excited. My Mom is now worried.

Anybody have any insight as to what is going on?

[Kimberly]

#1170622

Hello – I would suggest calling your doctor’s office to mention this if you have seen that much of a difference within a couple of days. You could just be dealing with some inflammation, but it’s best to get an expert opinion.

In the meantime, if things get to the point where you have issues swallowing or breathing, definitely visit an urgent care center or the ER if your doctor can’t see you right away.

Take care!

[snelsen]

#1170623

Hi Sarah,
I certain do realize that when a thyroid is enlarged, for whatever reason, it can be seen visually to be enlarged. But I think that when the thyroid gland is palpated, or felt by the doctor, who then might need to refer to his/her notes about the size, which I hope they have written, this is a more accurate assessment of its’ status.

So, probably to reassure your parents and yourself, probably it is best at this time to know that you are in the process of good medical management, and things can vary from day to day. You can call in the next few days, and report that it seemed bigger to your mom, but I would not expect that you will not get much comment from the office or the doc one way or the other. But in the call, you can ask if this is a concern, try to get a good answer for that. I suspect that you will be told that it is very natural and expected to have an enlarged thyroid in Graves’, and it won’t stay that way after you have had your entire treatment plan.

*If your throat feels really “crowded,” or if you are concerned, though, call the office and ask to be seen. Probably your assessment of your thyroid and how you feel,(having any difficulty breathing?) is the best one.

In my own experience, my thyroid was huge. I had the pre-treatment with potassium iodide before my thyroidectomy, and the thyroid got smaller, then had the surgery, and the thyroid was all gone! This was the right thing for me to do.

In conclusion, when we have Graves’, many of us have an enlarged thyroid gland, it is one of the many things that can “go along with the territory” with Graves’.

How are the places where you had the EKG leads? Have they gotten better, stopped itching?? Some advice, which I am sure you have decided to do already. When you have another EKG, INSIST,and make a stink if your are not heard, that you have a SEVERE reaction to the adhesive in the leads, and for them to find hypoallergenic leads. People who do EKG’s are frequently technicians, and may not have the training and medical background
to appreciate that this is a real issue for you. Quite a few people have a little round pink area that goes away in an hour or two. But you are in a different category! You are special!
Shirley

[sarah]

#1170624

Thank you Kimberly and Shirley.

Well I’m guessing the reason my dr thought my thyroid looked smaller is because the other side of my neck is bigger now too. I’m guessing it gave her an “evened out” appearance. Yay for me. Not.

As for my reaction to the adhesive, I’m glad to say the itching is gone; the blisters are gone. The only thing remaining is a red mark that is flush with my skin now. It looks like the leads burned into my skin. I’m praying it goes away but it’s looking more like a scar (5 of them) every day.

I’m thinking seriously of getting a medical alert bracelet. It can’t hurt. Watch me be allergic to it lol.

Hope you all are doing well.

[snelsen]

#1170625

Hi Sarah,
I love your sense of humor! It does help to laugh and smile a bit as we slug through all of this. So I’ll now say, “Gosh, I am so GLAD the other side of your neck looks bigger so that your EVEN!!!!” and not
Yes, when you order your allergy bracelet stating your severe allergy to the gook on the EKG leads, maybe you should ask them if you can trial it to see if you are allergic to the bracelet!!!!!!
So glad you are healing at the spots where the leads were. Now you have five new identifiers!
Shirley

[sarah]

#1170626

LOL Shirley! Thank you for making me smile!

I’m definitely going to ask the medical alert bracelet people about trying it out. I’m sure they might think I’m a bit crazy but better safe than sorry.

I definitely have five new identifiers. On the plus side at least a technician just coming out of college will know exactly where the leads go! lol

I decided I needed to laugh at this whole situation. I’ve cried long enough. I may cry again but at least for today I’m laughing.

You’re in my thoughts Shirley.

[snelsen]

#1170627

We need to give that girl who “gets it’ a national medal of thyroid honor!”

[Author]

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