Now They're Saying Hasimoto's

Hi running wild,

Sorry to hear this. Something to consider is that IVIG has been shown to sometimes cause this. Maybe it's worth it to retest once it's out of your system?

Thyrogluboluin:

High Thyroglobulin Antibody Following Intravenous Immunoglobulin Therapy [...]
https://www.ncbi.nlm.nih.gov/pmc/articles/pmc9805341/

(TPO) Ab:

Passively acquired thyroid autoantibodies from intravenous immunoglobulin[...]
https://www.jns-journal.com/article/s0022-510x(17)34434-9/fulltext

It's hard to say how often this happens though. Just some food for thought.

Hey running wild,

It is my understanding that TPO(thyroperoxidase)Ab is a Thyroid Autoantibody. So that would be explained with the second link I posted.

Again, I don't know how often this happen, just maybe that it's worth testing again before making any decisions.

RW - i think Rainy's links are valid

if 18% of blood donors are antibody positive for anti-thyroid antibodies - then there is a v good chance that there are some anti-thyroid antibodies in the IVIG your received - as that is from pooled blood.

and per the second link - if IVIG can contain one anti thyroid antibody it can contain the other

so the antibodies measured in your test, would in that case, not be your own - but from the donors
this fits with only mildly elevated numbers ( some antibodies from donors diluted with others and your own immunoglobulins - giving only low levels of anti-thyroid antibodies in your test) rather than numbers in the 100's - which is more common in hashimoto's

per astro - best plan would be to retest them at intervals of 6 weeks or so or 6 weeks after you stop IVIG and compare the levels - but at this point i would not worry
just a fraction over normal limits is not indicative of active auto-immune thyroid disease

running wild said...
Since TSH is a hormone, would that mean antibodies don't come into play with that test? It, as mentioned, was normal, as was T3 (with medication) and T4. Already having Sjogren's led me to consider the autoimmune aspect on thyroid might be more valid.

Thyroid antibodies do not directly affect TSH (which is ONLY a signal hormone from the brain, not cell consumable "fuel" like T4, T3).

Thyroid antibodies affect the thyroid gland itself (can take years sometimes) which release T3 and T4 (cell consumable hormones) into the blood stream to be used or converted for use.

Hey RW. I wouldnt worry about Hashi unless youre having a weird thyroid readings. As other's have poined out, IVIG often raises your TPO antibody titers. Mine are positive on IVIG.

Antibody tests can be weird sometimes.

Interesting.....Other peoples thyroid antibodies in the IGIV. Things they dont tell you about.

And I wonder if it needs to be "your own" antibodies in order for inflammation to occur?

Post Edited (astroman) : 8/7/2023 12:51:31 PM (GMT-8)

Garzie said...
i don't think so

i think the antibodies just attach to their target - and then the immune system mops up everything marked as such by the antibodies

i say this as some monoclonal antibody drugs are made in hamsters - and work in humans - eg for lowering cholesterol

Actually the IVIG antibodies do not, to my knowledge, cause any kind of thyroid issues. It's a good question, since you would expect that exactly what you outlined is what would happen. But I've never heard of it. I've also read in the past that hashimoto's is actually a t-cell issue, and that the antibodies only serve as a "marker" for the disease, but are not actually the main players in initiating the process. How true that is I'm not positive, but I did come across that when looking into hashi.

But that still begs the question why IVIG doesnt trigger symptoms of other antibody mediated diseases. I think its because most of the time the concentration of antibodies is too low to have any kind of effect (remember each batch is pooled from thousands of donors), and/or a disease process may be more than just the presence of a single antibody.

There is one antibody in particular, though, the GAD antibody that is also known to turn positive when on IVIG. Dr Katz actually had a patient who developed transitory symtpoms of Stiff Person Syndrome on IVIG, likely because of the GAD antibodies. He was going to publish a paper on it.

Post Edited (dcd2103) : 8/7/2023 12:16:27 PM (GMT-8)

Hey Dcd - nice to see you - hope you are doing OK?

yep - i tend to agree - the pool is so dilute in IVIG - we are only likely to see mild elevations of antibodies - and even if these are able to tag host thyroid cells as targets - there is likely just not enough of it going on to cause actual thyroid symptoms - and as you say - the mechanism in hashimotos is likely more than just mediated by antibodies so i would expect it to settle down again after they are out of the system

we know for instance that quite a significant portion of the population without any diagnosed thyroid issue has some level of anti-thyroid antibodies - also pointing to the fact that there is more to it than that

Edit: removing this comment because I mistook what dcd was saying.

Seems like we are all in agreement.

Here's the study:

Page 1: https://i.ibb.co/nsqct4y/thyroid1.png

Page 2: https://i.ibb.co/3rcwgvy/thyroid2.png

.

Hi running wild,

Let me apologize to dcd, I accidentally skipped over his first comment in this thread.

Yes, I do think and hope that they will return to normal after ivig. But technically it would be more of a contamination in the pool (passive) as opposed to the ivig itself causing an immune response .

Hey rainy! Good to hear from you.

I’m not sure I’m following, maybe our wires are crossed.

But I’ll clarify what I meant. As you probably know, IVIG is literally other people’s antibodies. They pool the IgG from a bunch of healthy donors. Because there’s a lot of people walking around w TPO antibodies, sometimes it will turn your TPO reading positive. It will return to normal when the ivig leaves your body. There are several other antibody tests this can happen to as well.

What I was saying is that I’ve never heard of these antibodies actually causing any symptoms in an ivig patient, for the reasons I mentioned above.

Hey Garzie, good to see you too my friend.

I’m doing so/so. I had a brutal run of just the worst neuropathy from Jan-Juneish. Developed erythromelalgia and POTs as well. The pots can be brutal.

Recently we tried midodrine which seemed to reverse the erythromelalgia and I was put on mestinon for the pots which helps and I’ve actually had a decent run there.

I recently experimented w the peptide TB500 too for about 3 weeks which just had a pretty dramatic effect on my neuropathy and arthritis both. That combined w daily foot massage has me up and wearing shoes and functional. So a pretty decent 2-3 weeks recently w the mestinon working the neuropathy a bit better post peptide. Hoping it continues.

New plan is to try autologous stem cells w a non profit called Hope Biosciences (who are doing clinical trials for various autoimmune diseases and long covid) before going the immunosuppressive route w rituximab which I keep putting off.

Also tried ivermectin for a couple days but unfortunately flared me bad

Hope you are well last we spoke you were slowly moving in the right direction

There’s another peptide I’m having custom synthesized, rtd-1 (also goes by the name oryn1001) which is part of the θ-defensin family of peptides native to all primates (except for humans) used for fighting infections and is being developed for rheumatoid arthritis and is also related to the mtd12813 which is derived from it and being developed for various antibiotic resistance bacteria, both could be useful for lyme some day

Post Edited (dcd2103) : 8/7/2023 4:11:05 PM (GMT-8)

Hey rainy, ah yes your message did go into spam lol! Just seeing it now. Thank you for the response! I did buy the mots-c but i have yet to try it, maybe will experiment with it soon. Will keep ya posted, these peptides are pretty interesting. TB500 and ARA-290 are quite powerful and benefiicial tools depending on your symptoms