After 3 different thyroid biopsies, two of which were inconclusive, the third showed abnormal cells and the Pathologist now recommends thyroid removal.

I am maintained on Prednisone, the autoimmune disorder results in a very nasty flareup after surgery. I cannot imagine how in the world they will ever be able to co-ordinate and stabilize doses of Synthroid and Prednisone. I have Mixed Connective Tissue Disease, and Chronic Inflammatory Demyelinating Polyneuropathy; together, these act more like Lupus, and are never really under control.

If anyone on this list has had any experience with a Lupus patient on steroids, requiring a surgery like this, I would like to find out how the case was managed under these circumstances. Sorry, don't mean to sound so upset, but I just cannot see how this is going to work.

The other thing of concern: the Radioactive Iodine Scan of my thyroid. The radioactive capsule taken the day before produced widespread burning all over. The actual scan the following day resulted in me spending the afternoon at the Urgent Care and the night in the ER-Fever 102, severe all over burning pain... If this turns out to be Cancer and is the type that responds to Radioactive Iodine, how in the world am I going to take this?

At this point, I am wondering if I should just forget surgery and hope for the best.

Thanks,
Cathie

Cathie,

Of course you're upset. Sorry I can't help, but I wanted you to have a response right away.

rose

Went through this with my son when he was 12 and there was only
1 book back then on rare Cancer's in Children and the just had a few
paragraphs. Shelley might be able to help,i just don't know because
of your meds. Please i know all of this is very scary,but i know i went
through that scare and then ended scaring mayself more. Sue how many
darn times can you say scare geeez. We will have to take it sort it out.
First of all your in a flood and was smart enough to get on a hill. And we
gotta take D by bus to CC so your going to be fine. Ok Mel find all
the answers. Cathie you will be ok. Untill then your going to have
to stay in a comfy chair while the bridge washes out. Mel, Sheeley oh
shoot. Sue

Sounds like an allergic reaction. I think your doctors should be able to
premedicate you for the Iodine. YOu don't get the iodine until after the surgery
anyway.

Typical premed would be 50mg Prednisone, 300mg Zantac and 50mg Benadryl.

How did your saliva glands feel when you had the scan? When I was scanned a few years ago, it was Technicium used...and my saliva glands tingled.
Now they are not working 100% and I wonder if they were damaged by the radiation....hmmmmm?

I would have thought it was an allergic reaction, but I have never had a reaction to iodine, not even with the CT Scan in December. I thought in a reaction to iodine it took your breath and your throat closed off. I didn't have that...

I would have guessed it was a reaction by sensory nerves to the radiation in the iodine, because it burned terribly, and started only after the radioactive capsule was given... The next day (day of the actual scan) it was much, much worse AFTER the scan...

I can't remember for sure the specifics about the salivary glands. They don't work real well either though...

Any idea how post surgery Prednisone and thyroid hormone might typically be co-ordinated to avoid causing a connective tissue disease flareup? This is my first concern.

The second is, how am I going to be able to take radioactive iodine after surgery considering what happened?

Sorry to whine here,
Cathie

I'm so sorry and you know your always in my thoughts. Can you call the place where you had it done? I think before the nexy voice your concern. I know for me I fear bothering them but in reality there suppose to be there to help at any time. Take care and I'm always here.

--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.