Desperately Seeking Brainy Ones....

[Rachel Cox]

Hello. I used to be brainy. I am now not. So I am in desperate need of some brainy others (Ramakantesh! Issie! Corina! Ophelialit! TAchyphlegming! Lumpchp! and any others who I haven't found on here yet!) who can apply some brain cells to my latest blood results.

see, I was expecting the usual ...nothing. But I got back from Mayo an elevated level of GAD65. And I have googled, as you do. I have found diabetes literature, autism articles, things about schizophrenia and dementia, something about 'stiff person syndrome' (the irony of my surname COX is not lost on me here... bahaha!) and the interpretive comment from Mayo: "this profile is consistent with organ-specific neurologic autoimmunity and predisposition to thyrogastric disorders" among other things.

Have any of you come across this before? Does anyone know of any POSITIVE therapeutic directions? I am frustrated and foggy and feeling a bit sad. I would really value your input. :-(

[ramakentesh]

Not sure why they would be testing for that. I think it relates to the breakdown of glutamate into GABA or vice versa. How it effects OI Im not really sure.

thyrogastric? Is that the stomach, thyroid or both? That term doesnt even come up in publications younger than the 70s. mmm.

[ramakentesh]

perhaps its a marker for autoimmunity but again it just looks like a metabolite so im not sure how it relates to autoimmunity.

[Guest Alex]

here is something relatively recent on thyrogastric syndrome but there is no mentioning of the GAD65

http://www.thyroidclub.be/Images/Pdf/CDEBLOCKThyrogastricsyndrome.pdf

It looks like some autoimmune marker according to 'dr Google'...

maybe someone brainier can shed some light into this for you Rachel

Alex

[ramakentesh]

^{[Antibodies to glutamic acid decarboxylase in patients with Graves disease].}

^{[Article in Chinese]}

^{An Z, Zhao H, Li S, Zhao G.}

^Source

^{Department of Endocrinology, West China Hospital, Sichuan University, Chengdu 610041, China.}

^Abstract

^OBJECTIVE:

^{To investigate the level and clinical implication of antibodies to glutamic acid in patients with Graves disease.}

^METHODS:

^{ELISA and RIA were used to determine the decarboxylase (GADAb) levels of GADAb, thyroglobulin antibodies (TGAb), thyroidperoxidase antibodies(TPOAb), free triiodothyronine (FT3) and free thyroxine (FT4) before and after treatment in the patients with Graves disease not yet complicated by diabetes mellitus and in the healthy volunteers as controls. Then the relations of GADAb to FT3, FT4, TGAb and TPOAb were detected.}

^RESULTS:

^{The correlation coefficients between GADAb and FT3, FT4 were--0.367 (P > 0.05) and 0.029 (P > 0.05), respectively. The correlation coefficients between GADAb and titers of TGAb, TPOAb were 0.320 (P > 0.05) and 0.394 (P > 0.05), respectively. The levels of GADAb, TGAb, TPOAb, and the ratio of patients with positive GADAb were reduced in the treated patients with Graves disease, but no significant difference was observed between the treated and untreated patients.}

^CONCLUSION:

^{The above data indicated that GADAb was related to Graves disease, but no relation was seen between GADAb and thyroid}

[issie]

This is something I'm researching at the moment myself. It has to do with too high glutamate in the body and autoimmune dysfunction. There is a relatively new illness that only a few hundred are known to have that are antibodies to GAD or glutamate problems. It causes issues with the conversions in GABA and glutamate. With this disorder there are autoimmune issues and they treat it with IVIG. (I personally, am using LDN.) Since so many of us are coming up with autoimmune illness and things pointing to that as a big problem - my knowing that I have problems with glutamate (aspartame. Long story and is on the site already. ER visit. MCAS connection.) This is something of interest to me. In fact, I see the doc tomorrow and the first thing on my list is to be checked for antibodies to GAD and also GAD65. I think this will be a new direction for some of us.

It most definitely can affect your cognitive function. It also can look like and cause the hyperadrenic surges that so many of us get. It does have connections with catecholamines. It also can be connected to MCAS. The connection to NMDA - is associated with glutamate. I had found Tramadol to be one of my best POTS meds. It not only works on serotonin, dopamine, opiate receptors - but, also NMDA. It shouldn't work for me - since I have high NE levels. But, it does. It has a very calming effect. It should increase NE levels. But, maybe it's the NMDA modifying effect that is the help.

There have been connections to Stiff person's syndrome, Anti-NMDA encephalitis, they are thinking that FMS and ME/CFS is also connected. Since there is so close of a connection the ME/CFS - would make sense that some of us may find the issue with POTS too. Maybe, especially us with HyperPOTS. I have a whole lot of theories right now on this. But, nothing totally conclusive. But, am very jazzed about it and what this may mean for some of us.

Interesting that you get a positive. I will see what my levels show.

Issie

[issie]

Oh, from what I could find on the antibodies to GAD ---it has been with women and is connected to something usually on the ovary - like a tumor -that has to be removed and also treatment for autoimmune issues.

But, that doesn't mean that this particular thing is the only way of there being issues with the balance between glutamates and GABA. There seems to be a conversion issue. That issue could be with men and women. Also, diets will play a role here.

There is also a connection with this and BH4. Some of us are finding issues with mutations on our BH genes.

You see --I've got a lot running around in my head ---I just have to sort it and make sense out of it all.

Issie

[Rachel Cox]

I heart your brains.
I am going to read what they sent my way in the morning but just wanted to say thank you for responding!
Rach

[sue1234]

http://www.mayomedicallaboratories.com/test-catalog/Overview/81596

I've seen where it is tested to check for diabetics, to specifically see if it is Type I or Type 2,, because Type I is the autoimmune type.

I ran across Mayo's lab's explanation of the GAD65 test. Basically, I'm assuming that "thyrogastric" refers to the test's listing of things that can elevate it, specifically autoimmune thyroid and/or pernicious anemia(B-12, due to atrophic gastritis in stomach).

Even though the thyroid and B-12 problem might be your case, definitely make sure they address possible Stiffperson Syndrome if you think it might apply. We had a person on this board that was diagnosed with it, had the treatment, and felt wonderful! So, don't let them leave that stone unturned.

[issie]

I got some of my old records and I've already been tested for GAD65 and was negative.

My doctor said that there is a connection between glutamate and gluten. (I will post more on my thread about protozoa - as he feels there is a connection to glutamate there also.)

Issie

[Rachel Cox]

thanks Sue for the link, most useful indeed. For some time I have been leaning toward Lambert Eaton Myasthenia Gravis (ex smoker). I need to discuss this with my doc and see what he thinks, but I fit the profile pretty well with all my symptoms.

[POTLUCK]

I have recent onset adult diabetes and had GAD65 checked to help test for a more rare type of Diabetes called LADA ( or Latent Autoimmune Diabetes of Adulthood ) It is an autoimmune marker, I do not recall if more common in certain autoimmune thyroid conditions or stiff person syndrome. Having an elevated GAD65 would not in itself me you have diabetes, a high fasting sugar and follow up OGTT ( Oral Glucose Tolerance Test ) would be used for this. If you were diabetic, it would strongly point to the cause.

[POTLUCK]

Rachel (Giraffe),

Are you on Domperidone? Or Don Perignon? Noticed on the bottom of your post and thought if it is the latter that is the RX I need?

[corina]

Thanks for calling me brainy Rachel, but unfortunately I have to admit that my brains have left me indefinitely (if not for ever) so I can't be of much help to you! Sorry!

[alijames]

Dear Giraffe

from a not brainy one.

I was evaluated for stiff-persons because of rigidity, sensorimotor neuorpathy

and spine deformities.

I didn't have a GAD antibody, though. Nearly everyone who has stiff persons does.

They are also usually diabetic and have thyroid issues and a hypreactive startle reflex.

For an interpretation of a GAD antibody, Hopkins is a good place to check and maybe google.

Good luck

alice

ps i think at some point all autoimmune markers start to blur together. we may be churning out random

stuff?

[Rachel Cox]

This is something I'm researching at the moment myself. It has to do with too high glutamate in the body and autoimmune dysfunction. There is a relatively new illness that only a few hundred are known to have that are antibodies to GAD or glutamate problems. It causes issues with the conversions in GABA and glutamate. With this disorder there are autoimmune issues and they treat it with IVIG. (I personally, am using LDN.)

Hi Issie, do you know the name of the relatively new illness they treat with IVIG? I'd like to look into that. :-)

[Rachel Cox]

http://www.mayomedicallaboratories.com/test-catalog/Overview/81596

I've seen where it is tested to check for diabetics, to specifically see if it is Type I or Type 2,, because Type I is the autoimmune type.

I ran across Mayo's lab's explanation of the GAD65 test. Basically, I'm assuming that "thyrogastric" refers to the test's listing of things that can elevate it, specifically autoimmune thyroid and/or pernicious anemia(B-12, due to atrophic gastritis in stomach).

Even though the thyroid and B-12 problem might be your case, definitely make sure they address possible Stiffperson Syndrome if you think it might apply. We had a person on this board that was diagnosed with it, had the treatment, and felt wonderful! So, don't let them leave that stone unturned.

Sue, thank you so much, I hadn't seen this information and is just what I needed. :-D you are brilliant!

[Rachel Cox]

I have recent onset adult diabetes and had GAD65 checked to help test for a more rare type of Diabetes called LADA ( or Latent Autoimmune Diabetes of Adulthood ) It is an autoimmune marker, I do not recall if more common in certain autoimmune thyroid conditions or stiff person syndrome. Having an elevated GAD65 would not in itself me you have diabetes, a high fasting sugar and follow up OGTT ( Oral Glucose Tolerance Test ) would be used for this. If you were diabetic, it would strongly point to the cause.

Hey Potluck, I don't have any thyroid issues, or any of the strong indicators of Stiff Persons Syndrome (I would describe me as floppy rather than stiff!). I am waiting to hear back from the immunologist, but as ever I feel like I need to understand the testing so I can understand his response. BTW, it is definitely domperidone... it's just my little nerdy quirk that gets a kick out of calling it dom perignon. Reckon we all would benefit from a prescription for bubbles! Stat!

[Rachel Cox]

Not sure why they would be testing for that. I think it relates to the breakdown of glutamate into GABA or vice versa. How it effects OI Im not really sure.

Hi Rama... Thanks for your input! I have been reading with some interest an article recently posted by Michelle about pregalbin. I have been on gabapentin since my op with moderate improvements in my peripheral neuropathy. And I read that pregalbin and gabapentin are essentially synthetic GABA. Having never heard of GABA until I got these results, started googling and sifting through your responses... I wonder if there is an important connection here. Or am I desperately connecting dots where there are none?

http://onlinelibrary.wiley.com/doi/10.1111/cen3.12006/abstract;jsessionid=8D4D188898649E17ABF83811AC35D46D.d02t01

[Rachel Cox]

Dear Giraffe

from a not brainy one.

I was evaluated for stiff-persons because of rigidity, sensorimotor neuorpathy

and spine deformities.

I didn't have a GAD antibody, though. Nearly everyone who has stiff persons does.

They are also usually diabetic and have thyroid issues and a hypreactive startle reflex.

Thanks Alice. I am certain I don't have Stiff Persons... sounds like a 'nice' diagnosis because there is a treatment for it! How are you going now with your search for answers?