March 8, 2011 at 10:23 am
I have “nodules” on my thymus gland and my thymus is enlarged–(usually in an adult it has shrunk) The thymus creates antibodies–and i am producing an abnormal antibody which is causing the neuropathy. anyway—given this info my neurologist has suggested removal of the thymus to see if it will stop the antibody production and allevieate the neuropathy. I’ve done tons of research and basically anything related to the thymus comes up as mysenthia gravis–which I do not have. My questions to anyone who may have encountered this is, did removal of the thymus alleviate your neuropathy?
another concern i have (possibly some of you who have had scts will know the answer)if I go ahead with the removal of my thymus could i still be consisdered for a sct if I decided to go ahead with that? any info would be greatly appreciated—Thank you.
Changes since i last posted–my diagnosis is not paraneoplastic neuropathy-(ruled out )—is now considered “immune related chronic inflammatory polyneuropathy with an identified antibody. Lori
AnonymousMarch 8, 2011 at 7:42 pm
17 reads, no replies. You’ve given the forum a tough assignment.
removal of the thymus? Nope, not for me. At least not until I have seen an endocrinologist, or two.
I also read that, supposedly, removal of the thymus may not be a big deal because plenty of T-cells are manufactured when we are young. Even so, I’d get a couple more opinions before I agreed ‘[I]to see if it will stop the antibody production and allevieate the neuropathy.[/I]’
As for SCT? For me, it’s simple. Call Chicago and ask them. The other simple part- I bet I would try SCT before I tried a cut and destroy surgery.
And then, given that previous statement- that is, most t-cells are supposedly already produced, I’d vote for try Plasmapheresis and see what happens. Also to be tried before cut and remove surgery.
Tough decisions. Good Luck.
AnonymousMarch 8, 2011 at 8:32 pm
the prospect of surgery, but I’d think at least 3+ times before actually considering it? Then about 27 times more before Doing IT!
By your ‘enlargement’, do you mean a ‘goiter’? I’d had one ages ago, long before the CIDP cropped up and it was biopsied and while it wasn’t optimal? [It decreased w/meds and was no longer an issue.]It was semi-functioning at that time. My own thyroid ‘died’ with a big bang – often called a thyroid storm, where your hands & feet swell awfully and that pain was my prelude to future pains. At that point, usually changing thyroid med doses can help immensely, but it’s got to be constantly checked and adjusted. At first every 3 months, then 2x a year, to once a year if you’re stable.
Do be aware that the endocrine system is a very complex set of glands!
Go web up ‘EndocrineWeb’ and learn about those glands. Each relies on signals from the ‘others’ to do a whole slew of jobs that keep us functioning well. Once one gland or set of glands goes off? Problems can and do ensue.
It is in part, testament for how hard it can be for docs, to diagnose us!
Just be sure that your T-3&T-4, plus the immune levels of those T-3’s and T-4’s are checked. Sometimes the #’s are soo above or below normal? You get more than one “*” after the test # results! It’s fun to watch docs’ eyebrows try to not RISE when reading these as they see you!
Thyroid for the most part is one of the easier glands to ‘fix’! Just learn about it and get treated right! Good luck and I hope you feel better in one little aspect of your life! [One doc I’ve had, calls it – Off the check-list’! I like those!]
March 8, 2011 at 8:43 pm
i used to write about the thymus alot on this site, i was rather obsessed with it because it is my only hope for a remission from this crap. The thymus is the biggest at birth, 50grams , i think it has been almost 4 years since i talked about it. then at puberty it again is at its ripest state with the optimum time to rebalance the imune system. by age 50, it starts shrinking and at 70 or so it is nearly non existant. so i guess if this crap has not left kev by his 20’s it probably will not ever leave. there are so many parallels with cidp and mg, even the dx are sometimes confused, that is why it was confusing to me when i asked the neuro about a thymemectomy he said no??? why would it work for one and not the other? i didn’t really pursue it since i am still waiting for the “ripe” period when puberty is in full swing. i also was confused about doing ivig at this critical time because i asked if the thymus gland is supposed to reprogram everything at puberty, how will it recognize that there is a problem with autoantibodies if we are filling the body with good antibodies via ivig? i feel the thymus gland will not recognize the error of over production of auto antibodies?? oh well all i can do is hope our t-cell regulators wake up and smell the coffee!! believe it or not, all of this is so connected to the gut and it’s health!! it is believed that 80% of the immune system centers around the gut. if you remember, the phase three trial with the type specific worms help to encourage t-cell regulators through proteins the worms emitt and the healthy gut flora they create. all too complicated and intertwined ahead of its time, maybe in a few years!!!
AnonymousMarch 9, 2011 at 6:42 pm
I was confused. so, I looked this up- credit to e-how.com
The Difference Between the Thyroid & Thymus Glands
By Carol Wiley, eHow Contributor
The thyroid and thymus glands are two separate and distinct glands in different locations with different functions.
Thyroid Gland Location
1. The thyroid is a butterfly-shaped gland located in the front of your neck, below the larynx (voice box).
Thyroid Gland Function
2. The thyroid gland secretes hormones that help control your body’s metabolism and calcium balance. Low thyroid function can lead to many problems, including weight gain, hair loss, and fatigue.
Thymus Gland Location
3. The thymus gland is located in your upper chest under the sternum (breastbone).
Thymus Gland Function
4. The thymus gland is part of your immune system. It secretes hormones that enable T-Cells (disease-fighting cells) to function against disease-causing organisms. The thymus is most active in children and becomes less active with age.
March 9, 2011 at 9:39 pm
thank you for the insight 🙂 yes it is my thymus–I am 47 so should not need it at this point in my life. Dawn–possibly it was not recommended for kevin due to his young age and his thymus still making necessary antibodies??? the thymus has a lot to do with our neuro muscular junction AND it creates antibodies. In my case, my thymus is larger than an average person my age and has some thymic tissue. if it werent for the neuromuscular symptoms then it would never have been discovered. I have no other thymus symptoms. My primary care dr said if it were him and he was my age he would have it out. Its a gamble it could do absolutely nothing or it could stop the abnormal antibody production??? I am awaiting a date to fly to Mayo in Rochester for an appt. with Dr Dyck. I will wait to see what his opinion is before having it out. Thymectomys now are much less invasive than years ago, they can be done with a tiny incision and scope instead of the old way of breaking the breastbone, etc. Dawn i had read some of your older posts on the thymus—could tell you had been researching this subject too : ) Lori
March 10, 2011 at 11:49 am
It is kind of neat when someone else makes the same connection. I often think my ideas are over thought as you mention you feel too. However, the facts don’t lie!! Regarding a thymemectomy, technically, you still do have a thymus gland, if my memory serves me it is 20 grams or so at age 50 compared to the 50 grams at birth. So it is still producing some t-cell receptors. By age 70 is when it disappears.
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