[barbra]

in reply to: Advice on anxiety 20 months post diagnosis #1185474

Hi Dee,

I just wanted to say that I agree with Liz. I was diagnosed in 2013, had RA and struggled to find the right dose of Synthroid. In the meantime I developed 2 fairly large nodules, which started to interfere with breathing and sleeping. In August of last year I finally had a total thyroidectomy and I am happy.
It’s only my personal story. Everyone is different and what is right for one may not be right for someone else.
I wish you the very best, hope that you can feel better soon.
Don’t give up, there is light at the end of the tunnel.

Hugs.
Barbra.

[barbra]

in reply to: Newly diagnosed, reaction to Methimazole #1185429

Hi redpoodle,

I was diagnosed in 2013 and had RAI that July. I had a small goiter and a little nodule, no big deal (the doctor said). There were 5 days of special diet, then 4 days of seclusion due to the radiation treatment. It worked, the thyroid shriveled and died, but I still felt awful and could not get stable on the meds.
The goiter got a bit bigger and I now had two nodules, which were growing and interfering with breathing and sleeping. My primary doctor sent me to an ENT (ear, nose and throat surgeon) and she did a TT that same week, August 2017. I spent one night in the hospital, needed only one dose of pain meds and the scar had almost disappeared a month later.
I am taking 75mcg of Synthroid, Oscal for calcium/vitamin D3 and I am stable, feeling well, like before Graves started.
Had I known about TT in 2013 I would have had it done then, but my doctor never mentioned it and I didn’t ask.
I hope whatever you choose goes well for you and I wish you the best of luck.

Hugs.
Barbra.

[barbra]

in reply to: Still fluctuating after all these years #1185413

Hi Sue,

I’m sorry to hear that you are still “doing the dance”, and I hope you can get settled soon.
I had my TT last August and have been stable on 75 mcg of Synthroid ever since. I can not tolerate the fillers in Levothyroxine, therefore I have to be on the name brand. Could not get stable on Levo.

Hugs.
Barbra.

[barbra]

in reply to: RAI or surgery #1185371

Hi beauty 2010,

I was diagnosed in July 2013 and had RA. Aside from the week long diet before and the 4 days of seclusion afterward everything went well. Except, finding the right dose of Synthroid and some other meds was almost impossible. Hormone levels were constantly swinging up and down.
Two nodules started growing on my now-dead thyroid. When they interfered with sleeping and breathing an ENT did a total thyroidectomy in August of last year.. Like Liz1967 said, the surgery was no problem, I went home the next morning. Very little pain, no complications and I was back to my old self. The scar was almost invisible a month later and I have been stable on 75 mcg of Synthroid ever since. I take some calcium/vitamin D3 supplement and that’s it.
My visits with the Endocrinologist are now spaced one year apart.
Had I been aware of a TT in 2013, I would have had it done to start with, but I was never given that choice.

I wish you the very best. Be informed and make the best decision for yourself.

Hugs.
Barbra.

[barbra]

in reply to: Newly diagnosed and treatment options #1185300

Hi,

I also had some cough and dry throat after the surgery, which happened because of the breathing tube. Using some mild cough drops it was gone after a couple of days.
I hope you feel much better soon.

Hugs.
Barbra.

[barbra]

in reply to: COPING STRATEGIES – Graves’ Rage #1185358

Hi Kimberly,

Before I was diagnosed I became aware that I was getting very impatient with my little poodle. Going for walks, him wanting to sit with me, it seemed that everything he did set me off. By that time my husband had passed away and I thought it was just stress from nursing him for 7 years. So it was just the dog and me. The poor thing did not know the “new” me.
I am sure that family members noticed my change in character as well.
After diagnosis and meds the old me was back – well, you know, almost.

Hugs.
Barbra.

[barbra]

in reply to: Told “wait and see” while losing my health & job #1185347

Hi SheWho,

I don’t know if any of the following is going to help but here it is anyway.

I was diagnosed in June 2013, had RAI in July and was miserable swinging up and down on Synthroid. I had a small goiter and two growing nodules. My endo did not seem to be too concerned since, over all, I was not feeling too bad (in his opinion).
In July last year I developed a dry cough and trouble breathing while laying down. My PCP sent me to an ENT (ear nose and throat) surgeon, who decided a total thyroidectomy was necessary.
It was done a month later and I can not believe the difference. I am happy, satisfied and on an even keel with my meds.
I am now seeing a different endo and he seems happy too. Had I known about the surgery, which nobody had mentioned, I would have had it done in 2013.

Like I said, I don’t know if any of this is helpful, but, remember, there is light at the end of the tunnel.
I wish you the very best.

Hugs.
Barbra.

[barbra]

in reply to: Just curious about RAI #1177982

Naisly,

WOW, is such hostility really necessary?
I could hardly believe my eyes reading your posts.

Barbra.

[barbra]

in reply to: COPING STRATEGIES – The dreaded a.m. wait for breakfast and coffee… #1185343

I am retired and a night owl so, since I don’t have to get up early. I set my alarm for 7:30am, take my synthroid and go back to sleep until I hear the school bus (my neighbor). That’ll make it an hour. Then I’ll start my day.
My problem comes in with calcium and the 4 hour wait. I’m trying to lose weight using SlimFast, which, like the milk, contains calcium. One is supposed to have one shake in the morning and one at lunch time.
I had a tt last August, doing great, am taking Oscal in the evening and either start setting my alarm at 4 or 5:00am or stay fat as a tick. Haven’t worked it out yet.

Hugs.

Barbra.

[barbra]

in reply to: I don’t want to wait and see. #1185268

I was diagnosed in 2013, had RAI and later developed some nodules. Due to interference with breathing and sleeping it was decided, in August last year, that a total thyroidectomy was needed. After one overnight stay in the hospital,very little pain and no complications I am back to my old self. The scar has all but disappeared. I see the endocrinologist once a year and I am finally stable and the long misery is behind me.
I just wish my doctorI had told me about the surgery in 2013.

Best of luck to you with whatever you decide.
Hugs.

Barbra.

[barbra]

in reply to: After a long absence, back again! #1185113

Thanks flora, kimberly, emmtee

I’m glad this is over and done. The pathology report was a bit more extensive than what I posted here, but the most important thing was the headline.

The scar is getting smaller and thinner every day, voice is much better too, but my singing career is not going to get off the ground. Just kidding, never could hit the high notes to start with.

Take good care, y’all. Sending hugs and healing wishes.
Barbra.

[barbra]

in reply to: After a long absence, back again! #1185109

Hi,

Good news.
I just got the result from the pathology department at Hershey Medical Center in Pennsylvania.
The diagnosis is: Follicular adenoma, oncocytic (Hurthle cell) type.
Which translated evidently means it’s benign.

Saw the Endo this morning and everything looks good. Keeping an eye on the calcium level. Still taking Tums 1000 mg 3 times a day.

I am feeling well, normal and good as new.

I wish you all the very best and hope you find your “normal” very soon.

Hugs.
Barbra.

[barbra]

in reply to: After a long absence, back again! #1185107

Hi emmtee,

I had an appointment this morning with the surgeon so I asked her again about the disappearing thyroid and she said RAI shrivels it up over time and that’s how it gets smaller.
She peeled off some of the glue and what I can see so far looks good.
She also had the pathology report of the goiter, nodules and thyroid tissue. They are not sure about their diagnosis and did not commit themselves one way or another. So, they are sending everything on to Hershey Medical Center in Pennsylvania. In another week or so I should know something.
I feel fine, no pain and no effect from the dosage change of Synthroid.
I hope it stays that way.

Hugs.
Barbra.

[barbra]

in reply to: After a long absence, back again! #1185106

Hi emmtee,

My doctor said that on one side there was very little of the thyroid left and what was there was scar tissue. On the other side the thyroid was still the original size, just all scar tissue. So, evidently, over the years the tissue does disappear. Don’t know where it goes, though.
I’m glad it’s all done. I hope the scar will someday only be a thin line, like the doctor said.
I am signed up with a Patient Health Portal from the hospital and the doctor posted the surgery report. That is truly interesting reading – a blow by blow account of everything done in the operating room and how it was done. Fascinating!

Hugs.
Barbra.

[barbra]

in reply to: After a long absence, back again! #1185104

Hi everybody,

TT is all done and I seem to be back to my old self, well aside from the rough gobs of glue on my neck.
Everything went as planned on the 16th. The cut across is 3 1/2 inches long and had a drainage tube protruding out of it on one end.
The doctors said that my thyroid, or what was left of it, was a mass of dead scar tissue due to the radiation 4 years ago. The para thyroid was left intact. Everything else (scar tissue, goiter, nodules) is gone.
The first day was painful (swallowing, moving my head) and sleeping almost impossible. The main discomfort came from the tube and all the tape that held it in place. Some nausea and dizzyness. But I only needed strong pain meds twice, after that it was Tylenol. They kept me overnight at the hospital. After more bloodwork, mainly to check calcium levels, they let me go at 7 pm that evening.
I got prescriptions for Percocet, Tylenol, Calcitriol and Tums (yeah, really Tums, 1000 mg) and 100 mcg of Synthroid.
After another night with hardly any sleep, although feeling better with much less pain overall, I took my Synthroid waited about an hour and had my customary 2 cups of coffee. No breakfast. After a while my hands started shaking, heart racing, blood pressure up. I was dizzy, nauseous and weak. I already had an appointment that morning to have that irritating tube removed. I didn’t trust myself to drive so my son took me. Turns out that the increased dose of Synthroid together with the coffee brought on the reaction I had. As a result they lowered the Synthroid to 75mcg and my coffee to one cup (the second one I can have in the afternoon). Also, I have to eat 3 meals a day because of the Tums. I’ll be looking like a blimp in no time at all.
Now to the fun part – the tube. After removing all the tape the doctor said to count to 3 and she pulled out the tube. What I had thought to be maybe an inch stuck in my throat turned out to be 6 inches of flat looking tube. Seriously, folks, it looked like a tapeworm! She put a bandaid over the hole and we were done.
Since then the pain is gone, I am good to go. My neck looks like crap. I asked my son if my neck looked all gnarled up and he said yes and there’s the scar there too. When I came out of recovery he looked all shocked and said: “What did you all do to my mother? You cut her throat? I brought her in for a broken ankle!” He really had them going for a moment. (I can’t take him anywhere)
So, all in all, I seem to be doing well and am pain free. Also, without that tube I slept all night. We’ll see what the scar is going to look like when all that glue comes off.
Test results on the goiter, nodules etc. should be in by Tuesday.

I want to thank you all for your good thoughts and well wishes.
I’ll keep in touch and hope you all will too.

Hugs.
Barbra.

[Author]

Posts