Uh oh... Thyroid biopsy not so good...
 

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

Cathie
 

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. :grouphug: :grouphug: Sue

oh, no...
 

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.

Yes, you do seem to be--
 

--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.

I looked around about this...
 

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.

Cathie, I have a lot of decent and halfway decent ....
 

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?
:Scratch-Head: - 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

Hi Cathie, i can only send my very best wishes to you and i am hoping that the doctors can tweak your meds around a bit, so you are not in so much discomfort whilst on that treatment, that's if you have to have it of course, never know, they can do wonders these days, i will be another thinking of you.
good luck
Brian :)

Cathie
 

I wish I could offer experience with the surgery and other issues - but not much help there - but am sure you will get all the info you can first and sending you the best...

I do have a friend that had her thyroid taken out in her early 20's/ was immediately identified as cancer and caught totally by chance while at the doc for another reason - she had it taken out - then went thru about a week in the hospital taking oral radiation (was some years ago) that did make her very sick for a few days - shes fine now almost 20 years later but is dependent on her thyroid med daily....

So the trick for you, if surgery necessary I know - is the right balance to prepare before and after to deal with any conflicts in your body ... we're certainly got the right group here to help...

Hang in there..... and again, sending very good wishes for your doctors and you to be able to make the best decision.....

Cathie when I had my surgeries ..
 

last year I approached it by making it very clear I would not have any surgery IF I did not have an anathesiologist who is familiar with the repercussions that affect neuro issues and auto-immune issues as well. When I made an analogy of the possible s/e's on DEMEYELINATION as in MS the light bulbs went off....It was no problem after that. I hope this is a comfort. I was very clear and concise on this issue every single interview, doc appointment and hospital prep interview...evey step of the way-so no one could 'forget' it.

I'm going to post this not to scare you but to give you information. One year ago my daughter's best friend had part of her thyroid removed, the cells examined and then it was decided to remove the rest of it a week later due to iffy cells. Vivian was kept overnight the second time so they could monitor her since she had problems with her throat swelling the week before. Family and friends left by nine that evening, two hours later they got a phone call that she had to be crash carted, her throat had swollen shut and shut down her airway. No one seems to know exactly how long she was without oxygen, Viv lingered for three weeks and then passed on the second anniversary of my daughter's death. She left behind three small children and hubby, she was twenty-eight years old and renovating her first home, life was good for them. All because the anethesiologist choose not to put her on a heart monitor, the lawsuits are pending but this hospital screwed up big time, and in the end, no cancer cells. Make sure you are monitored for the first 24 hours, Vivian was an awesome woman, beautiful, and vivacious, this didn't need to happen, another case of being your own advocate and having family to make demands too. My daughter died because Tacoma General misdiagnosed her and wouldn't admit they were over their heads and two years later Vivian, same hospital, two young women that didn't need to die. I remember Vivian coming into Angie's room, bursting into tears and saying "Oh Angela, what have they done to you?" We moved my girl to the University of Washington medical center and they had her off the ventilator in four days and on the road to recovery. She went into septic shock the day I was to fly her home to us for rehab, her liver couldn't come back from the second shock and we lost her twenty one days later. God I miss my little hippie chick, thank god we have her little one to raise or I don't know where my head would have gone. I am rambling now, just want you to know you need to watch for swelling and don't go home if you have any, make them watch you!

Jannaw:

I read your post with such sadness. I am so sorry for your loss. And your daughter's friend. Oh my goodness!!!! Such unnecessary sadness.

I am however happy that you get to raise the little one.

May you have peace and joy with that child!!!

Melody

I am trying to pull things together today. I think I will return to the surgeon who removed my gallbladder (initially my first choice for surgery). He and my Pulmonary Doc/Critical Care doc are familiar with my health problems and I feel safer in this environment. I cannot go into surgery wondering if someone will know what to do about the Prednisone issue. While I like the doctors I have seen at the school, I have only recently been seen there and don't feel they are overly familiar with my history.

The slides from all 3 biopsies are being sent to an out-of-state Pathologist, whose name I can't remember, but he writes pathology textbooks and the hospital here consults with him on occasion... This makes me feel a little better having someone else look at them...

Cathie

Smart idea on the pathologist. I'll have an update for ya on Thrusday but looks like I may be bound for surgery in Texas on 7/24

Keeping my fingers crossed for you Cathie :hug: