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in reply to: Total Thyroidectomy Scheduled 2/5/09 #1074005

As far as MD’s go, I can’t say if an ENT or General surgeon is better. It depends on the individual, his/her practice, and how many successful thyroidectomies they have performed.
Where I work, I trust one certain MD who did mine. He recommended Dr.Orlo Clark at Stanford 8 years ago to me. When I decided to go ahead with surgery, Dr. Clark had already retired, and I felt no MD was better than Dr. Jon Benner on the Central Coast of California. I recover thyroidectomy patients post operatively, so I have seen the outcomes. It seems that only RN’s like myself get the weird side effects known in the medical profession as the "Nurse Curse". ” title=”Very Happy” />
If I did not work for this hospital I probably would have opted to go to a special surgery center that ONLY does Thyroidectomies. I saw a place like that online, but I do not know anything about them. Ask around, someone will know.

Karen

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in reply to: Total Thyroidectomy Scheduled 2/5/09 #1074003

Yes, I have found that many RN’s have Grave’s Disease. A stressful job over many years?
I have had an autoimmune disease since childhood though, Raynaud’s disease. It went unnoticed since I lived in the desert, but
each time I played in the snow I had excruciating finger & toe pain that the other kids did not have. I was not diagnosed until age 21 when I was living in Aspen, Co.
I was 42 when Grave’s symptoms started. That was one year after my mother died (unexpectedly) in my home which was heartbreaking for me.
I am now 50, my thyroid is finally out, completely. My thyroid med is not where I need it to be since I am gaining 2 lbs. a month, am very tired, sleep a lot. I have hand joint pain too
which started 3 weeks after the thyroid came out. I am attributing that to HYPO, but maybe a med side effect?
I am currently on 100mcg levothyroid, and 5 mcg of T3. I do feel much better now though since I am not so tense, jittery, jumpy, and nervy.

Karen

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in reply to: Joint Pain??? #1074571

My joint pain began as soon as the HYPO symptoms began.
Thyroid hormones affect every cell in our bodies. I don’t believe we have all the answers yet in Grave’s disease. I have learned the hard way that just because a test/lab value is negative does not mean that the symptom is not real.
I knew in 2001 that something PHYSICAL was wrong. Rapid symptom onsets were: I had an eye bugging out, constant eye watering, weakness, fatigue, irritability, night sweats, insomnia, weight GAIN followed by rapid weight LOSS, and a rapid heart rate. The tests were all negative for thyroid for over 6 months so I was told that I needed Xanax because "I was JUST an anxious woman". The best MD’s at Stanford Medical University AND UCLA Medical Center wrongly diagnosed me with a rare, bizarre disease that put everyone on the wrong track.
There is a saying I like to quote from a retinal surgeon I work with:
"If it walks like a duck and sounds like a duck, it’s probably NOT a zebra." ” title=”Smile” />
The worst part is that I have practiced in the critical care arena of the medical field for over 20 years now. I trust my symptoms now and I don’t let the doctors blow off my symptoms as unimportant or not related.
Though there is no written scientific evidence that I have found relating to joint pain and thyroid levels specifically, it makes sense to me that my joint pain could "possibly" be related to my new hypo symptoms.
I had a carpal tunnel surgery in 2007. I now know that carpal tunnel disease (in my case) was due to the fluctuating thyroid hormone levels. It was such a rapid onset once I lowered my thyroid levels. I had muscle atrophy and bone loss due to Grave’s HYPER thyroid. I have hypertrophied eye muscles due to Grave’s. I now have HYPO symptoms status post total thyroidectomy.
2/2009 was my thyroidectomy. Three weeks after my Thyroidectomy I went very hypo in my levels. That is when my right ring finger began to hurt, and "get stuck" each morning. When I am too hypo my joints hurt. MD’s immediately rush into bizarre, exotic disease diagnoses, but I know my body. For me, HYPO means a whole new set of symptoms. In my case, joint pain is one of them. It is joint pain in just my right ring and middle finger now. I have no answers, but I have the symptom. I hope this helps someone who is experiencing the same symptoms.

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in reply to: Two Different Eyes #1070922

Prednisone worked for me back in 2002. It is not a drug to take lightly though. I had many side effects, but my eyes went partially back into my head. I also wore lightly tinted eyewear indoors since my eyelids would not close and it scared people.

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in reply to: Thyroid Surgery #1070844

Dr. Orlo Clark has since retired.
I had my thyroid out Feb 5th by a trusted surgeon I work with. It was recommended to me by my Endo to have a total thyroidectomy.
RAI was out since I have the eye disorder.
He said it is easier to stabilize thyroid hormone levels with the proper dose of thyroid hormone replacement (that the body can recognize), rather than trying to suppress excess levels of thyroid hormone being unnaturally released by taking PTU or Methimazole. You can’t measure how much extra thyroid hormone is being released daily due to antibodies attacking your gland, but you CAN control how much thyroid hormone goes into your body once the gland is removed.
My endo & surgeon stated that a partial thyroidectomy is not the best choice since a sick thyroid is not going to function any better if half is removed, PLUS a second surgery is much harder and dangerous. (Higher % of complications).
My surgeon informed me that he finds cancer upon removal of a sick thyroid in a significant % of Graves patients which was a surprise to hear. My case was no different. No cancers were seen on ultrasounds, labs, or exams, but 2 types were found post-op on the pathology report. It was wise then that I opted for total thyroidectomy. I would have hated to have a second surgery after the pathology findings. This way we got it all out.
I got very ill after being on PTU for 8 years. I am now 4 months post total thyroidectomy. I was so ill for so long that I did not know what normal felt like. It took 3 months post-op to feel the turn-around. I am not 100% but I feel so much more "normal".

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in reply to: Autoimmune Disorders #1073356

I have had Raynaud’s Disease since childhood, but did not get diagnosed until 1980. Grave’s diagnosed in 2001.

Karen

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in reply to: Hair loss – I’m scared #1073244

I can’t comment on post-partum, but after 8 years with Grave’s disease, weight loss, bone density loss, and muscle atrophy in my arms and legs, I noticed I began shed a lot. My body was depleted since the HYPER increased over time where once it had stabilized on PTU.
I had to up my PTU dose in December, and the hair loss was exponential. Each time I brushed I pulled handfuls of my hair from the brush and would just flush them not knowing where to put it all.
The PTU made me very ill as well. I attribute the hair loss in part to the increased dosage needed to go euthyroid prior to surgery. It has been 3 weeks since my thyroid has been removed. My hair & nails are improving. I have less fall-out (excuse the pun) now that I had my dying thyroid removed.
Hang in there and keep posting. You are not alone.

Karen

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in reply to: Had Thyroidectomy Feb 5th-still not well #1073524

Thanks for the support! I need it. ” title=”Smile” />

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in reply to: Total Thyroidectomy Scheduled 2/5/09 #1073999

You had the surgeon I would have gone to had he not already retired. As for the PTU, I was in remission briefly, and at one pill a day with no side effects, the decision to wait was
easier. When PTU stopped working well I quickly moved to plan "B" which was the surgery.
I’m glad it’s out, and I hope the side effects go down soon too.

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in reply to: Total Thyroidectomy Scheduled 2/5/09 #1073997

Dear gardar,
Thanks for the info.
I had great surgeons and nurses. Unfortunately I am having a rough recovery. I have much difficulty swallowing liquids and choke a lot. My respirations
are stridorous and labored. The thyroid was diffuse, quite sticky, and I am a tiny person so the neck muscles got stretched for sure in attempting to remove it.
I need to take 4,000-6000 mg in Calcium replacement daily right now which leaves no appetite for much food. The pills are a lot of fun so far……(not)
I’ll get one caught in my throat and it won’t go up or down so I end up gagging on it and it shoots out of my throat and across the room. Very glamorous. (not)
The left layrngeal nerve was temporarily troublesome, but my voice is almost back.
I may also have a small amount of vesicant extravasation at the old IV site which can lead to skin necrosis, but I am already past the window of Regitine treatment. It’s watch & see for now. The surgeon spoke with me today (Sunday) and is wanting to see me first thing tomorrow a.m.
I have not needed pain medicine since the immediate post-op period. Of course it hurts some when I cough, but I see no reason to add more pills to this regimen.
It will take more time to recover, but RECOVER I will!

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in reply to: Total Thyroidectomy Scheduled 2/5/09 #1073995

My titer was 978 if my memory serves me
(what’s a memory, right?)
” title=”Smile” />
Karen

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in reply to: Total Thyroidectomy Scheduled 2/5/09 #1073992

Thanks Carole.
I hope I can keep working since I am only 49. It is hard to always pretend that I feel okay. I never know how I will feel from day to day or even minute to minte!

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