[Ski]

#1065985

My goodness, what a tough time this is for you! It’s REALLY impossible for us to say what might happen next, considering your path, but it sounds as though your doctor is very responsive, and that’s definitely helpful.

Since you’ve been mostly unregulated, all of this may be predictable, I guess, but since it happens differently to each of us, sometimes we just have to take the ride and see what it’s like, if you know what I mean. Do the best you can, make sure your doctors know what’s going on, and go easy on yourself. Sounds like you are doing that.

You are SMART to check with the doctor when scary stuff happens (I’m sure you’re up on Thyroid Storm and its symptoms?), so keep doing that ~ don’t be afraid to "pester" them, it’s their job to monitor your health and give you advice. Hopefully the PTU will give you some relief until your surgery.

I’ve heard that when a patient has both Graves’ and Hashimoto’s, the typical treatment is ablation (either RAI or surgery), simply because it is so hard on a body to be constantly out of balance AND moving to extremes in opposite directions. I hope you are feeling better VERY soon, and please keep us updated on your treatment and how you’re doing!

[jasmin24]

#1065986

Ski wrote:My goodness, what a tough time this is for you! It’s REALLY impossible for us to say what might happen next, considering your path, but it sounds as though your doctor is very responsive, and that’s definitely helpful.

Since you’ve been mostly unregulated, all of this may be predictable, I guess, but since it happens differently to each of us, sometimes we just have to take the ride and see what it’s like, if you know what I mean. Do the best you can, make sure your doctors know what’s going on, and go easy on yourself. Sounds like you are doing that.

You are SMART to check with the doctor when scary stuff happens (I’m sure you’re up on Thyroid Storm and its symptoms?), so keep doing that ~ don’t be afraid to "pester" them, it’s their job to monitor your health and give you advice. Hopefully the PTU will give you some relief until your surgery.

I’ve heard that when a patient has both Graves’ and Hashimoto’s, the typical treatment is ablation (either RAI or surgery), simply because it is so hard on a body to be constantly out of balance AND moving to extremes in opposite directions. I hope you are feeling better VERY soon, and please keep us updated on your treatment and how you’re doing!

Yes Im aware of thyroid storms, etc. I’ve been dealing with the rollercoaster of having both for 5 years, dx’d for 3 though. I was completely against any sort of ablation… but after a lot of research I realize I dont want to feel bad for forever. I am only 27 and have two young kiddos. Its obviously not going away ” title=”Sad” />. I’ve read (and dr confirmed) that if you have Grave’s and have RAI you could still get the "eyes"… I dont have that and dont want that. So we decided surgery is the way to go. We can’t do surgery until my levels are normal though. The dr said if I dont get better soon they will hospitalize me. On Friday they believe I had warning signs for stroke. Anyways, like I said, its just hard to know if im feeling better. Sure I feel better sitting on my butt all day :p i guess tomorrow will be the true test of how it is. Hopefully my middle schoolers will be nice to me.

Anyone have thyroid surgery? good or bad decision?

[jasmin24]

#1018606

I was stupid and stopped taking my medication for about 6 months. I didnt feel it was doing anything for me as i still felt horrible and to top it off, i was gaining weight. Well i finally realized the error of my ways and went to the endo. Got back on track. the day after i started the tapazole and lopressor (which ive always taken in the past for 3 years now)… i felt HORRIBLE. Dizzy, migraine for 7 days, weak, tired, just horrible. Ive never felt so bad. The doctor did labs after about 10 days thinking maybe i was having an adverse reaction to the tapazole. The lab work showed nothing except that my levels were still exactly the same, they hadnt gone down whatsoever. I was on 30mg Tapazole and 50mg Lopressor. So i was to take 40 mg now. Ok… but i felt even worse. Chest pains, arm went numb. Scary stuff. The doctor told me to come in right away. I went and they still dont know what happened but decided to switch me to PTU and Inderal. I’ve been on these since Friday afternoon. I was ordered by doctor no work til tomorrow (wed). Im a teacher and i had been working through all the horribleness. So, I have been home resting, sleeping, doing nothing. I have however went out twice to the store. After going to the store for just a few things I feel like i’ve run a marathon. Is this normal? Tomorrow I go back to work and Im afraid that once i start back at work I’m going to feel the same as I did last week. ” title=”Sad” /> I’ve been doing a lot of research and have decided to have thyroid removal. My doctor doesnt push anything, I’ve done lots of research as well as talking to her and its totally up to me, and thats what I’ve decided. I’ve had too many ups and downs (I have grave’s and hosimotos). Anyways, anyone have any insight? Im new to this board. Thanks! ” title=”Smile” />

[Bobbi]

#1065987

Some of what you were describing rang true for me. While many, many people seem to be able to take the antithyroid drugs just fine, I felt significantly worse on PTU, even when it had me at normal levels of thyroid hormone. Once I had my thyroid removed, I began feeling better, until I regained my health. So I hope that path is the same for you.

I removed my thyroid via RAI, though, so I cannot tell you about the surgery — other than the reports from people back to this board over the years. You can run a search on the website for their comments. I have several friends who had their thyroids surgically removed — due to thyroid cancer –and they are healthy people now, too. The key, we’ve been told, is to find a surgeon who does lots of thyroidectomies with a low incidence of side effects. The thyroid cancer support group (ThyCa) has information on surgeons on their website.

Wishing you good luck, and better days soon.

[snelsen]

#1065988

Hi Jasmin,
I am responding to your interest in knowing the experience of people who had a thyroidectomy. I was very toxic
(hyperthyroid) after the birth of my first child. Hyperthyroidism is the same thing as thyrotoxicosis, and boy did I feel toxic!
I lost weight, had a rapid (160-180 heart rate, ravenous hunger, never slept, extremely hot all the time, and was basically in overdrive all the time. Never wanted to go to bed. Super hyper. Maybe I will invent a new word! Hypertoxicosis!
I was on PTU, it really helped, but the moment I went off it, all symptoms came back. I then had a sub-total thyroidectomy. This is one record I don’t have, but I THINK they left a small amount of thyroid gland on either side. Not sure what the standard of care is today.
Anyway, I could hardly wait for surgery! My experience with the surgery was great! I had a thyroidectomy when I was 24 and my child was 5 months old.
Everything went smoothly, minimal pain, and it did not take very long for me to become euthyroid (neither hypo or hyper.) I think it was about two months, and immediately after the surgery, my heart rate decreased, and I felt better.
It is definitely good to find a surgeon who does this surgery. I tried to use the Thycal site that Bobbi recommended, but I was not able to find names of surgeons. But I am sure it is my novice navigation skills.
I chose my surgeon on the recommendations of the endocrinologist. He was great.

[jasmin24]

#1065989

snelsen wrote:Hi Jasmin,
I am responding to your interest in knowing the experience of people who had a thyroidectomy. I was very toxic
(hyperthyroid) after the birth of my first child. Hyperthyroidism is the same thing as thyrotoxicosis, and boy did I feel toxic!
.

Thats how mine started too! ” title=”Sad” />

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