Question regarding ANA

[JennaShi]

Does anyone know why TPO antibodies are on the ANA test if Graves disease and Hashimoto’s are not systemic autoimmune diseases?

[KayHimm]

I know the ANA can be positive if you have thyroid disease, but do not think the ANA actually includes antibodies for Graves and Hashimoto’s.

I believe Hashimoto’s and Grave’s are called single organ autoimmune disease, not systemic autoimmune diseases.

It is a bit confusing with the ANA.

[JennaShi in reply to KayHimm]

Hi KayHimm thank you for responding,

I have had two ANA panel tests, one being the ANA 12 profile and the other being Avise CTD, both including thyroid antibodies, not a regular ANA panel. I agree with you there and wonder if the ANA is to detect autoimmune cells that attack the nucleus of a cell, does this mean they too attack the nucleus? If not don't see why it would even be put on there as it is possible to have both auto immune thyroid condition and a autoimmune systemic condition. It sets some people up for failure with the rheumatologist as they don't see past thyroid antibodies.

[KayHimm in reply to JennaShi]

Well, it should not be that a rheumatologist wouldn’t see past the thyroid antibodies. In fact, in my particular case, thyroid inflammation was seen as pointing to autoimmunity. They would have to see more than the ANA, though, to think there is a systemic autoimmune disease present. They would be watching for signs of inflammation in organ systems and signs of inflammation in blood work.

These immunological tests are very complicated. I couldn’t begin to tell you what they mean. An endocrinologist or rheumatologist could explain why the ANA can be positive in a person with thyroid disease. Maybe if the specific auto-antibodies like anti DNA and anti SM are negative, they conclude the ANA is not significant.

Maybe the best thing is to ask the rheumatologist how they know the ANA is positive because of the thyroid disease and not lupus.

[JennaShi in reply to KayHimm]

I'm glad they figured it out for you. In my case none tested were high enough so they concluded Thyroid antibodies, however, I've have Graves disease since around 2007/08 and every thyroid antibody test I've had since 2016 has been high over range and only at that point my ANA had been getting higher. I have tried asking two Rheumatologists and have been dismissed. From my understanding systemic autoimmune diseases wax and wayne with antibodies for some people and the last ANA test the doctors had was a regular test and it was normal according their standards so I haven't been tested since. My thyroid levels have been optimum since 2017/18. I'm not trying to be rude to you, I just am questioning the system because I disagree with how my personal case has been handled. I have since sought out genetic testing and have been found to have variants linked to RA and Lupus and will be meeting with a geneticist tomorrow to go over this and see if there is further suspicion. In my previous session with this same geneticist his thoughts were that my case is strongly autoimmune (after being told multiple times there are no more unknown autoimmune causes. But here I am sitting here with Raynauds, Dermatographia, Autoimmune Gastritis, post Graves, Polyneuropathy, IBS and terrible fatigue. I was hoping someone else had some other insight as my B12 levels have always been "within range so far" etc.

[KayHimm in reply to JennaShi]

What do they think is causing the autoimmune gastritis and neuropathy? You have a lot going on.

[JennaShi in reply to KayHimm]

The Autoimmune Gastritis is autoimmune in nature. This I had discovered after seeing the second Rheumatologist. The polyneuropathy we don’t currently know; we have ruled out Sjögrens, diabetes with fasting test, atleast one std, and spinal problems (Neurologist ruled out b12 as my results have only showed b12 in 300s and higher when I started injections). I did share about how b12 can he affected due to Parietal cells being destroyed but he kay or may not come to that conclusion on his own time. A referral to UCLA has been sent, so hopefully we can figure it out. Do you have any thoughts or experience with polyneuropathy?

[MEGS53 in reply to JennaShi]

Hi. Do you have gastric parietal cell autoantibodies? If you do, (and clinical symptoms) it is my understanding that you have autoimmune gastritis. This usually leads to lowered B12 and folate absorption. I hope you get answers to your complex health problems.

[JennaShi in reply to MEGS53]

Thank you, I do. My story is a bit more long and complex, I just tried to shorten it for time and writing sake. The problem I’ve encountered is that the gastroenterologist who gave me an endoscopy sat on the results for a year because he didn’t know About Autoimmune Gastritis and sent me on my way. After asking multiple times and finally getting the results, I was having to look things up and finally have the conversation with him and he agreed and finally sent some sort of letter to my gp. The other issue is that we don’t have a lab that tests for active B12, only regular b12 (tests for both active and inactive) and by that time I had been seeing a naturopathic doctor who gave me b12 supplements. Upon taking them my b12 would go up 600s and down to 300s when not but I never found out what was being used and wasn’t low enough to get injections from the doctor so I have been ordering my own and just injecting myself b12 level over top range now). I have been taking folate, vd/k2, iron etc. as well but Just found out I have the MTHFR gene so I’m learning about how that plays in to folate.

[MEGS53 in reply to JennaShi]

I also have gastric parietal cell autoantibodies and low B12 (now treated with B12 injections every 10weeks + calcium). I have been dx'd with IBS and, along with long-term gastro issues, I also have a hiatus hernia and esophagitis (treated with Omeprazole). Because of my low B12 and large red blood cells my GP says I have 'technical P.A.' (I'm not anaemic, but I always have a rather low rbc count). I have a constant intention tremor, which can worsen in certain circumstances and balance issues. I've had muscle- and nerve- conduction tests which were more or less normal, ruling out any large fibre neuropathy, I think. Apparently, small fibre neuropathy is not investigated by these tests.

Ok, that's enough about me, I just hope some of this might shine some light on your health issues. Best wishes, I do hope you get help soon.

[JennaShi in reply to MEGS53]

I'm sorry you're going through this, that's tough and I've heard Hiatal hernias are no walk in the park. That is nice that your doctors recognize the B12 aspect of it all and are giving you injections. Have you considered buying your own b12 and increasing doses? Along with the folate/ b12 combo it's important to get your magnesium, potassium, Iron and I'm sure you know your vd/ k2 levels tested and supported. are you taking any form of Hcl to help with the beginning digestion issues? I too have balance issues, other neurological issues. Have they talked to you about your tremor?

You're correct, regular EMG tests do not detect small fiber neuropathy; your doctor would need to perform a skin punch biopsy. If you have paresthesia in your legs and or arms a skin punch biopsy would be able to confirm if you're looking in that direction. I too have had a normal emg; he only said there was a delay but said that could be because my temperature kept dropping. I've had a skin punch on both legs and confirmed SFN.

Thank you it does, and although unfortunate, it is nice to meet you and others on here who are also struggling with similar issues. I hope so too!

[MissusTee in reply to MEGS53]

I have gastric parietal antibodies too, amongst many many others. No one seems concerned about it, should I?

[MEGS53 in reply to MissusTee]

No one seemed to interested in my GPC antibodies either, until I developed symptoms such as tremor, gastro problems and low vit B12. Whether these things are truly linked to the antibodies, I really don't know. I just gratefully accept the B12 jabs in the hope they'll make me feel a bit better and less fatigued. If you have low B12 and folate levels it might be worth asking. I hope this answers your question.

[MissusTee in reply to MEGS53]

Thank you. Rheumatologists do seem to ignore these things until something actually happens and with 4 autoimmune conditions and many other antibodies I worry that something will get missed particularly with awful digestive problems.

[MEGS53 in reply to MissusTee]

I totally agree with you about rheumys. And I do think things get missed in the muddle of our complex symptoms and various antibodies. It could be worth pushing your rheumy/gastro about GPC, especially as you have digestive problems. You might have a better chance if your blood B12 and/or folate levels are low. Best wishes.

[KayHimm in reply to JennaShi]

Yes. The diagnostic issue with the neuropathy is that autoimmune disease is not the only cause, and it may be fairly common. So even when you clearly have an autoimmune disease, they refrain from saying “caused” by unless they are sure it is the autoimmune disease. Maybe in some cases they are more certain. There are tests that can be run for small fibre neuropathy may make the cause clearer. Others here know a lot about this and will be able to help you. I have autonomic neuropathy, which is a different part of the nervous system.

As for the autoimmune gastritis, it is not specific for lupus but could very well occur. Lupus can affect nearly every part of the body. I would want to hear from a GI specialist exactly why this does not point to your having a systemic autoimmune disease.

I would certainly want to hear what they think at an academic center. You are definitely not easy to diagnose. Could you have your own expression of autoimmune disease? Will be interesting how they view it.

I really feel for you. It isn’t just the ANA being positive in Hashimoto’s that is the problem. My internist said many years when ready to refer me to a rheumatologist, “You have an illness that just isn’t expressing itself in a way that we can get a handle on.” I look back and think more doctors should say that when confronted with a hard case.”

[JennaShi in reply to KayHimm]

Thank you, that makes sense and I agree with you that it’s better to be honest and say that. It sounds like you had a great support system! I think around where I am doctors have a hard time getting past seeing the problem as potentially systemic as you said if it doesn’t present as a usual case. If you read my (long) comment to Megs53, my previous gastroenterologist didn’t have answers and didn’t offer much help; he wasn’t familiar with Autoimmune Gastritis and I have yet to speak with another Gastroenterologist because my primary thinks it’s manageable even though I have not been able to receive injections from their office, I buy my own. Atleast they recognize the condition, I still would like another opinion. The funny thing is I don’t have Hashimoto’s just Grave’s disease (post now) with really high TPO antibodies.

Yeah, AIAG isn’t that common, that’s probably why my Gastro sat on my results for a year. The main thing is that it is an “an autoimmune problem,” but you’re right, there are alot of unknowns which makes it difficult and frustrating.

[KayHimm in reply to JennaShi]

I think I just found another thing that is making this confusing. Autoimmune gastritis is found in up to 35 percent of patients with Hashimoto’s. So they maybe they are attributing it to that and not systemic autoimmune disease. But could they be wrong? What is causing the terrible fatigue? You must be so frustrated.

[JennaShi in reply to KayHimm]

This is is new information to me. I had the appointment with the geneticist and he pointed out a few genes showing up in my DNA: I have two IRF5 genes both Homozygous, 1 BANK1 Homozygous, 1 DNASE1 Heterozygous, and 1 FCGR2A gene that is Homozygous.

ghr.nlm.nih.gov/gene/IRF5

With that being said, he said this is another piece to the puzzle and that I do not have a clear representation of Lupus or RA, there are some genes that I have that contribute to the "autoimmune problem" and are commonly seen with Lupus. He didn't give me a diagnosis but I believe this may help me get closer to one and for sure understanding more of what is going on with my immune system. I've attached an article incase you or someone else is interested. For reference if anyone is looking into it, the testing I got was Whole genome Sequencing by Dante Labs and the additional Autoimmunity report. They also provide a opportunity to speak with a geneticist; I've been speaking with Dr. Boccuto.

[MEGS53 in reply to JennaShi]

Hi again. I feel I must reply to your post, but please ignore my comments if you see fit.

Please be aware that there are many, many steps between a gene mutation and expression of a functional (or not) protein, ie enzyme, in this case. I think the geneticist was - quite rightly - unable to dx on the basis of genetic mutations. There are times when a clinical outcome is directly linked to a small genetic change (eg Downs syndrome), but they are very few. Your geneticist is correct that these mutations can point in the direction of a syndrome - but please be aware that this is all that can be derived from genome sequencing in a single individual.

[JennaShi in reply to MEGS53]

Hi Megs 53, I agree, it's merely another puzzle piece and not an official diagnosis. One interesting thing that he pointed out was that the IRF5 gene is what decides how much to attack and how often etc. and I have two of these genes with both copies, it makes perfect sense as I have alot that going on.

[MEGS53 in reply to JennaShi]

Hi. I'm sorry, I don't understand 'the IRF5 gene is what decides how much to attack and how often'?

BTW, I've had my whole genome sequenced as part of the '100,00 genome study' done by the NHS on subjects with complex diseases (my non-identical twin was my control) and.........the data could not be interpreted even in the light of a complete medical history!

[Alisbabas]

I have Hashimoto’s and It doesn’t just attack your thyroid as it’s shrinks it it attacks other parts of your body like other autoimmune diseases

I know someone who had kidney failure due to Hashimoto’s and you can get hepatitis.

Mine effects my bowels, eyes, lymph glands and cause TMJ.

I believe it can effect an ANA as I’ve been researching I’m being referred to a rheumatologist due to other symptoms.

I was going to pay private for a ANA test but it said it possibly show positive it you have Hashimoto’s or graves.

I know the TPO are the antibodies for thyroid.

Ali

[Hidden]

Can’t comment on all the antibodies but I have just been diagnosed with my fourth autoimmune disease (first seropositive) - fifth if you include eczema - as the US already does. One of these is Hypothyroidism, one was a misdiagnosis and two are systemic rheumatic diseases. I was diagnosed with hypothyroidism by a GP 20 years ago and gradually stuff like Swine Flu and Vit D deficiency seems to have triggered others. I actually don’t know if any doctor is yet in a position to work anything out fully using serum as the only biomarkers.

We all know the saying that once we have one autoimmune disease, others can and do come along like buses. It’s called Multiple Autoimmune Syndrome. That’s why good rheumatologists need to be like detectives or even wizards! And it can take many years to find the one who runs the right tests and has the right hunches. There are diseases that were previously regarded by the medical community as functional eg IBS, which are now regarded as autoimmune eg IBD. No clear cut serum rules exist in Rheumatology as they tend to in Endocrinology.

Sometimes biopsies, scans etc are needed and they need to keep monitoring the blood thoroughly too because persistent systemic symptoms can suddenly be matched by ENA antibodies - just like that.

And I should know because it’s just happened to me.

Your instincts are probably pretty reliable by now so keep pushing to find good doctors for some clarity