Well, my son had been to the immunologist about 1 1/2 weeks ago and today the office called and gave him his blood work. He had TPO or Thyroperoxidase level of 16, 280 (normal antibody level is 0-35). The TPO is the antibody that is attacking the thyroid gland. My son has this horribly high level and has a diagnosis of Hashimotos Encephalopathy which means that these antibodies are attacking his brain.Needless to say he has not been himself but has been able to work--some days I didn't know how he did it.
Anyway,the doctor did more blood work this last appt and his TPO went up from 16,000+ to 23,000+ and doc increased his Methotrexate from 20 mgm a week to 25 mgm a week. Me thinks that son may well end up having IVIG also. Wow, hubby had IVIG for about 10 months for his hypogammaglobulinemia (low IgG levels) and I get IVIG so may end up with son sitting next to me monthly. What an autoimmune mess we have at our house.
Second son is having thyroid issues now and had a baseline TPO just to have something to go by for the future. My dad had a sister who had bad thyroid and a couple of other things that I know had to be autoimmune diseases. She died in early 40's and an old picture of her is the classic "myxedema" look that people get when they have bad thyroid disease that has not been treated soon enough. Irish
Oh, Irish. You don't need this! But I'm so glad we live in a time when treatment is available.
Hugs, Sharon
So very sorry to hear that your sons' condition has escalated. I remember he has one or two children and was going through other personal issues as well.
And now a second son presenting.
They are so fortunate to have you actively advocating with all your medical knowledge and experience.
Keep us posted as to how all of you and grandson too are coping.
Difficult as some people tend to internalize their feelings.. is your son talking about it to you.. or feeling you have been through enough? I always seem to get the most 'talk' out of my son alone in the car.. after awhile of gentle probing. Like 'pulling teeth'.
My very best to all of you and a treatment, even if partial to bring some resolution.
We talk about everything at our house. I go with son to doc as he doesn't get all this medical jargon. We are a pretty open family and things get discussed. I bought a wall hanging a couple of weeks ago: Here it is::
In our FAMILY we BELIEVE in SECOND CHANCES
We do GRACE
We do REAL
We do MISTAKES
We do APOLOGIES
We do LOUD really well (Oh boy, do we)
We do HUGS
We do LOVE
I thought that pretty well sums life up. Life gets tough and we all get mad and ornery, etc but the deal is we are family and we don't quit on each other. Period. We all do really dumb things at times but we are all imperfect in one way or another.There is always another day and that means there is always a chance that life has a chance of getting us through the bad times.When you thnk of it, if you didn't have the bad times you would not appreciate the good times. Thanks for the support. Irish
Your sons are lucky to have you! :)
Love the Wall Hanging..lol
Here we do "take a deep breathe and tell me about it"
At an ER for dear daughter .. Dr. asked me to leave the room.. Daughter said "Why?, I tell my Mom 'Everything' ".. Dr looked surprised.. ??
Son another story.. he tends to hold things in.. wants to handle everything himself.
So I tread lightly into his space.
When they don't want to talk about things it sure takes patience for the "right time and conversation" to come about. It wears me out at times and I think that I raised these kids once, right!!! Hah, A mother's work is never done.lol Irish
I had put this info on another thread today but will add it here also.
Son was to his immunologist again for a followup and had the blood work done again. He has been on the 20 mgm of Methotrexate weekly and does seem to feel a little better. Well, his thyroidperoxidase has gone from 16,280 to 21,000+++ so doc increased his metho to 25 mgm a week. Time will tell but if this doesn't level off I am wondering if the IVIG will be coming down the road,
He has been having problems for years and just getting worse. If he hadn't left his wife (finally) and moved home he probably would have ended up in extremely bad shape. His ex didn't believe he was sick and was so nasty that he quit going to the doc as she complained about the money, etc. Again, a mother's job is never done. Didn't take any of us long to figure that out did it!!!! Irish
Oh Irish, your family does deserve some good news for a change. I hope the increase in MTX does the trick.
If not, if he has inherited your great sense of humour, I can imagine you two having great fun doing the IVIG together.
Those nurses wont know what hit them ;D
Sending many positive vibes your way.
Hi Irish
Any news from your son? Is he doing okay?
Kathyx
Son is still living with me and his son comes every other week. Son will be moving out in 2 weeks into a rental and that will be good for all of us. Son is some better and his energy level is up but still not where it should be. Doc told us it would take months/years for his antibodies to go down. Right now the 25 mgm of methotrexate seems to be helping some. His antibodies went up actually, but his aches and pains are less and his concentration is better.Thankfully, he has been able to work throughout this whole thing.
Interestingly enough, another son was to an allergist and had testing done and is now referred to my immunology clinic as his IgG subclass 4 is low. This in itself doesn't always mean much, but he has celiac disease and probably has sjogrens as he has had dry eyes and mouth for years plus body aches, etc. He suffers from terrible fatigue, sinus issues ongoing plus constant colon issues in spite of his gluten free diet.
This son is also hoping to get his 6 year old into immunology also as this child has celiac and has been on a gluten free diet but is having increase in symptoms. Out family is just a sicko bunch that is for sure. Thanks for asking. Irish
Irish, you certainly have an interesting genetic history in your family. Have any doctors commented on this?
My very best wishes for all your boys.
Kathyx
My immunologist, who is slowly becoming our immunologist certainly talks about our family history. We keep hoping that we could get in on a study but actually, that would be such a time consuming thing that I don't think any of us could work it into our lives. Our docs have all been so good to us though cause they know we just keep plugging along in spite of it all.
This means that I only have one son left who won't have been seen by the immunologist. I am truly surprised because this son is the one that I always thought would be the celiac like his dad I really think my side of the family has the worse autoimmune issues. Lots of AID in my cousins and their kid. Irish