--between the proverbial rock and hard place.

I have a friend who has Bechet's disease, another ANA vasculitic autoimmune variation, and he is due to go in for spinal fusion surgery soon. Not unlike you, we are trying to find a way he can get his proper steroid doses around the surgery, and we haven't yet figured out a way to do this without the strong possibility of an autoimmune exacerbation.

Unfortuantely, the surgeon seems to be unconcerned; think he just is not familiar with these situations.

Not sure what to make of your sensory neuropathy flare with the iodine; what meds do you normally take (if any) for that type of pain? And, are there any alternatives to the iodine therapy post-surgery that can be discussed?

"Unfortuantely, the surgeon seems to be unconcerned; think he just is not familiar with these situations".


This may be a dumb question, but how on earth can a surgeon, (a reputable surgeon I mean), be unconcerned that you might have a reaction to anything during or after a surgery??

While I haven't had many surgeries, I have had 3 operations and each and every time, someone has gone over my allergies, reactions to anything, etc. etc, questioned me up the kazoo, etc. etc. It got so annoying, that I once I found myself saying "I already answered these questions". Now I can fully understand how thorough these people were.

What has the world come to when you have an obvious concern and the surgeon (or his staff), does not choose to understand, or completely research this problem before you have the surgery.

I do not get it. Maybe, because I live in NYC??? Do we really have that much better medical care than other places?

My god.

I'm sorry to be so gloomy, but Cathie, when I read your posting, I really felt for you. I hope somebody listens to you at your end and helps you out.

And whine away all you want.

Love, Melody

I guess I would ask the doc's these questions prior to moving ahead with surgery. The first thing that comes to mind is what is 'abnormal'? Aren't they going to type the cells and let you know what type of abnormality they are dealing with?

My feeling is that if you got so ill from the test, that then you need ALL the info you can get prior to going ahead with a procedure that is a 'no turning back' kind of thing, once started.

Ask your questions now, and be persistant until you get them answered. Thyroid cancers, by the way, are usually slow growing, if it is a cancer. Abnormal doesn't mean cancer. I would get clarification as to what 'abnormal' means.

Surgery is a big deal when you are already sick, and this is not neccessarily going to 'cure' what other ailments you have going on. Take time to research, get questions answered, and weigh the risk versus benefit.

I wish I could help you more with this, as well. It is complex. I can only wish you wisdom, and healing.

and could not find a clear answer. However, some of the thyroid sites say that only thyroid tissue takes up the iodine. That other cells do not.

It is used after surgery to kill any wandering cells that escape into your circulation and set up metastasis situations.

You'll get a better answer from your doctor, I hope.

sites on the whole danged issue if you want an excerpt of my 'library'...I'd saved them all for my own 'just in case' which turned out to be 'merely' Hashi's . Just let me know....

What I do recall learning is that after a thyroid is removed...finding that absolutely perfect dose of replacement med makes all the difference! For some, which med and at what dose can become controverisal -sound familiar?
- j

I have a question about thyroid stuff.

My mother had a tumor on her thyroid removed when I was 14 years old. To my knowledge she never took a thyroid med. Her sister, my Aunt Sallie, has taken Synthroid for as long as I can remember. She is now 85 years young.

My father had something called a goiter, when I was about 17. He used to wear scarves and one day, a family friend, Florence (I will never forget this), grabbed at the scarf and said to my father "Frank, why are you always wearing scarves?" and as she pulled it, they saw a growth on his neck. I'll never forget this. They called it a goiter, and I believe he had some sort of surgery and it was all taken care of.

Now my son, (last year) was diagnosed with an underactive thyroid and is now on Armour.

So how come it skipped me??? I have always tested in the normal range. Nothing ever showed up as abnormal and I remember distinctly asking my previous doctor, "do you think I might have thyroid problems, (my weight, I meant). and he ran all sort of tests and he said "nope, you have to eat less". So I ate less and exercised and I did lose weight. It's hard for me because of my diabetic meds. Diabetic meds slow down your weight loss. I found this out at Cornell. I once asked them "what do you mean, it's hard to lose weight on insulin or diabetic pills'. and the doctor replied "it's stored in your fat cells".

So how come my family has thyroid problems and I never did??

Amazing.

Melody

Thanks to all who responded...

Glenn: The medication I took after the nasty reaction was 1 of my friend's Methadone pills, because the burning was so severe. I won't be taking one of those again, believe me...

In the past the Anesthesiologist has bumped my steroids up in my IV for surgery, although sometimes I have had to argue to get it done. Afterwards though, someone should be following the steroid adjustment, because this is when all he** can break loose in a flareup... Doctors who are not savy about autoimmune illness, don't seem to have a clue asto what happens w/flareups and how to medicate to avoid them...

I know that this is not the way things are supposed to be done, but most of the time, I have to adjust my own dose after something like this and it is done according to how I feel. I up the dose (hopefully) before the flareup hits, and then gradually reduce it as tolerated.

Dahlek: Could you please PM or email the sites to me? Thanks for offering.

Rose, Mel, MrsD, Sue and Daniella: Thanks so much for your responses, and Mel, I don't know a whole lot about thyroid issues, so cannot say why you don't have problems. I would offer you mine, but I don't think you would want them...

Cyclelops: How would I best address this and with which doc? Should I get the slides from all biopsies and get someone else to evaluate them? The Endocrinologist is mailing me the path report. I had not thought about the wording "abnormal" being so non-definitive...


Cathie

Many thanks,
Cathie

Oh, that's okay Cathie:

No need to send yours my way. I'll just be thankful for what I have and not put any (as they say in Jewish), Channa Horra. (evil eye).

I will say one thing about this Methylcobalimin (for those who don't take it yet). This has to be the best thing I did.

I literally went from being afraid my feet were going to burn all the time (you know, you fixate on something and it's really all you think about). So when I first got the full boat of symptoms, well, I got the full boat of symptoms. So I would walk around going, oh my god, they're burning again, and god forbid I dropped anything on my foot, jeez.

Well, for whatever reason, the gods are smiling down on me. Maybe it's because I have a good control on my sugar (but then again, I have been doing this for 2 years). All I know is that I can get up in the morning and I don't think about my feet. Only once in a while, (like when it's going to rain), my feet will burn for a few minutes and then go away.

So, in my case, what changed dramatically, was the length of the burning of the feet, the intensity of the burning of the feet, and the triggers for the burning of the feet.

I can sit for longer periods without any burning, I can walk with no burning at all. (I always could walk with no burning, so that's no change). But just the fact that it's not always lurking in my mind, well, I can only attribute it to my taking of the methyl. And yesterday, I again dropped a hard thing on my foot. I waited for the electric shocks and guess what? No electric shocks. So, for however long this lasts, I'm as grateful as can be.

And every doctor of a diabetic should be telling their patients to go on this stuff. Now I'm going to Cornell on the 20th. I had previously asked them about the Methylcobalimin and they just shrugged and said "well, it can't hurt".

Let's see what they say this time!!!

Melody

Cathie

I have just turned on and read the posting about your possible thyroid removal. I know absolutely nothing about this problem or the medicines, scans etc. you refer to. I do however feel sure that whatever you choose to do will be the right choice. I myself am putting off recommended by-pass surgery because of my fears both of the surgery and of the effect on my PN. I am therefore not a very good advocate for one thing or another. You have some very good advice coming from the experts here and you have so much emotional support too.

I am thinking of you and praying that you will pull through this “rough patch” as you always have done in the past. As for whining – just whine away as much as you feel like – that’s what your friends are here for. I will keep watching for all your updates Cathie.


Tony