Very high TPO-Antibodies in CSF

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Hey,

I just got the report from my last hospital visit. They checked my cerebrospinal fluid (csf) for Antibodies and found the Tpo-ab to be 2503 U/ml.

The Tpo-ab in the serum are at about 175.

Does anyone know if this could be related to my currend health situation? Or at least have comparable numbers for me?

Canned
 

Helen

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Hey,

I just got the report from my last hospital visit. They checked my cerebrospinal fluid (csf) for Antibodies and found the Tpo-ab to be 2503 U/ml.

The Tpo-ab in the serum are at about 175.

Does anyone know if this could be related to my currend health situation? Or at least have comparable numbers for me?

Canned
Hi Canned,

ME-doctors use to claim that there is a higher prevalence of thyroid issues in ME-patients.
You should ask for the reference ranges for the lab and your test. They differ between labs so you
should have them related to your test and lab. It´s crucial to keep the numbers to be able to compare
with future testing.

I would recommend reading Dr. Jeffrey Dach´s excellent articles about Hashimoto´s .
https://jeffreydachmd.com/hashimotos-thyroiditis-and-selenium-part-one-by-jeffrey-dach-md/
He clearly knows how to treat thyroid antibodies and thyroid issues.

He also has a really good article about ME/CFS
https://jeffreydachmd.com/2018/04/the-non-mystery-of-chronic-fatigue-syndrome/

I know some women who got rid of thyroid antibodies, just by stopping eating gluten. Your doctor should follow your thyroid antibody levels by testing until they are normal.

Best of luck!
 

pattismith

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Hello @Canned

Did your doctors ever consider that your symptoms could match with Hashimoto encephalopathy ?

Here a case recently published:
...
Background

Hashimoto’s encephalopathy (HE) is characterised by a subacute, steroid-responsive encephalopathy in patients with positive antithyroid antibodies (1). The clinical presentation is highly variable; common clinical features include confusion, altered consciousness, tremor, transient aphasia, gait ataxia, seizures and sleep abnormalities. The natural history of the disease is relapsing-remitting (2). There have been just a few hundred cases reported in the literature. The average age of onset is 42 years, and it has an estimated prevalence of 2.1/100 000 people (3). The heterogeneity of the clinical presentation, the high prevalence of antithyroid antibodies in the general population and the lack of a clear underlying pathophysiological process has led many to question whether HE is a true syndrome. Diagnosis is made in patients with an appropriate clinical picture and high antithyroperoxidase (anti-TPO) antibodies after infectious, toxic and metabolic causes of encephalopathy have been excluded (4). However, objective data on the neurocognitive impairment in patients with HE and their improvement with treatment is limited. We present the case of a 28-year-old woman, illustrating a different approach to diagnoss and treatment of HE.

Case presentation

A 28-year-old woman was initially referred to the chronic fatigue clinic. She was a special needs teacher. During her teenage years she suffered from relapsing lethargy that coincided with menarche. She developed hypothyroidism secondary to autoimmune thyroiditis aged 20 years.
At the age of 26 years, she had been housebound for a year with fatigue. Her symptoms were dominated by lethargy, cognitive decline, poor concentration, generalised muscle aches and migraines. She was unable to sustain employment. On examination, her body mass index (BMI) was 35.7 kg/m2, and she had no features of endocrinopathy.


Investigation

]Blood results showed that she was adequately replaced with thyroxine, TSH: 1.78 mU/L (0.35–5.5 mU/L) and T4: 15.1 pmol/L (10–19.8 pmol/L). Routine bloods including full blood count, urea and electrolytes, liver function, erythrocyte sedimentation rate and C-reactive protein were within normal range. An autoantibody screen revealed high anti-TPO antibody titre 1214 IU/L (0–50 U/L). Antibodies for autoimmune and paraneoplastic encephalitis were negative.
Cerebrospinal fluid (CSF) examination showed normal protein, glucose and white cells. She had positive oligoclonal bands restricted to the CSF compatible with a central nervous system-specific autoimmune disorder. Anti-TPO antibody CSF titre was high at 771 IU/mL.
Random glucose readings ranged between 4.3 mmol and 4.8 mmol, and she had no symptoms of Whipple’s triad. Thus, the possibility of hyperinsulinaemia or hypoglycaemia contributing to the clinical picture was not formally investigated.
Sleep apnoea studies were normal. MRI brain was unremarkable and an ultrasound of her thyroid revealed signs of chronic thyroiditis with multiple sub-centimetre nodules.
Electroencephalogram (EEG) showed no epileptiform discharges but a slower than expected background rhythm with intermittent sharper waveforms. The positive CSF TPO antibody in conjunction with her symptoms, normal imaging and nonspecific changes on the EEG were consistent with HE.
We organised comprehensive neuropsychological evaluation before and after treatment. The results are illustrated in Table 1 and show an average or below average intellectual performance at presentation.
......
 

Gingergrrl

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I just got the report from my last hospital visit. They checked my cerebrospinal fluid (csf) for Antibodies and found the Tpo-ab to be 2503 U/ml.
@Canned I was curious, what led your doctor to check your CSF for TPO autoantibodies? I have Hashimoto’s Disease (diagnosed in 2013) but my thyroid autoantibody levels have always been measured via blood test. Did something specific prompt them to check your CSF?
 

BeADocToGoTo1

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As others mentioned above, Hashimoto's (autoimmune thyroid disease) is worth looking into. To have the thyroid properly checked, it would include all six of these tests: free T4, free T3, reverse T3, TPOAb and TgAb antibodies (to exclude Hashimoto autoimmune), TSH. Reverse T3 is often overlooked, and so is Hashimotos. Another book on thyroid issues which may be of interest was written by someone who suffered and overcame called Paleo Thyroid Solution by Elle Russ.
 
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@Helen

Thank you for your reply! I will check These articels later.

Did your doctors ever consider that your symptoms could match with Hashimoto encephalopathy ?
Thx for your answer. I did consider it, but all the case reports describe serve cognitiv problems with messurable neutological abnormalities. My neurological test were all normal.

Hey @Gingergrrl , they did check it for all kinds of Antibodies.. for no specific Hashimoto-reason :)
Accually, the Tpo-ab might not been in the csf but in the blood. There might be a mistake in the report. I have to check that on Monday. If that would be the case, my Tpo-ab would have increased from 170-2500 in the serum in 2 weeks. Ether way, there is definitely an autoimmune thing going on...
 
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As others mentioned above, Hashimoto's (autoimmune thyroid disease) is worth looking into. To have the thyroid properly checked, it would include all six of these tests: free T4, free T3, reverse T3, TPOAb and TgAb antibodies (to exclude Hashimoto autoimmune), TSH. Reverse T3 is often overlooked, and so is Hashimotos. Another book on thyroid issues which may be of interest was written by someone who suffered and overcame called Paleo Thyroid Solution by Elle Russ.
Hey @BeADocToGoTo1 , thx for your reply! My RT3 was high when it was measured 3 month ago. I did try Tybone (T3) because of that, but got neuropathic pain from that..
 

BeADocToGoTo1

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Hey @BeADocToGoTo1 , thx for your reply! My RT3 was high when it was measured 3 month ago. I did try Tybone (T3) because of that, but got neuropathic pain from that..
Hi @Canned

Just because I have seen the impact of thyroid and Hashimotos on a loved one and it nearly detroyed her until it was diagnosed and treated by a doctor who had the disease herself, one more message on the subject.

The impact (or root cause) of thyroid issues on ME/CFS symptoms is not to be underestimated.

Hopefully you have access to a good functional or endocrinologist doctor who preferably has thyroid issues him/herself. Ask if they prescribe Armour (NDT), and not just the synthetics. If not, (run!) find another doctor as it shows that they are closed off to properly treating you.

Since the protocol of thyroid hormones and supplements is very specific to your body and the tiniest over- or under-medication can cause massive swings it is important to find a good doctor to help you with this balancing act. Synthetic (Synthroid) made it much worse, but Armour and a supplement regiment helped in my wife's case. For others it is the reverse. Or just T3 is needed, but there are very few doctors who will do this and have the experience to do it properly and safely.

In addition there are some related nutrient levels that would be good to check:
  • selenium, iodide, iron, ferritin, iron binding capacity and saturation, and DHEA.
There are others here like @Gingergrrl that are far more experienced than I am on the subject and it looks like she already replied above.
 

Gingergrrl

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Hey @Gingergrrl , they did check it for all kinds of Antibodies.. for no specific Hashimoto-reason :) Accually, the Tpo-ab might not been in the csf but in the blood.
Thanks and I had just been curious why they tested for thyroid autoantibodies in the CSF vs. blood. It sounds like it might've been a blood test after all or maybe they were testing your CSF for other reasons so they threw in the test for the Hashi's autoantibodies as an extra bonus :)

Ask if they prescribe Armour (NDT), and not just the synthetics. If not, (run!) find another doctor as it shows that they are closed off to properly treating you.
I agree and have only taken Armour since I was diagnosed with Hashi's in 2013 and have never taken a synthetic thyroid med (and wouldn't feel comfortable with one).

There are others here like @Gingergrrl that are far more experienced than I am on the subject and it looks like she already replied above.
I'm actually not that knowledgeable outside of my own experience with Hashi's and autoimmunity in general.
 
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Thank you @Gingergrrl and @BeADocToGoTo1 !
I am actually very sensitive to thyroid medicine. It took me 1 1/2 years to find the right dose and it’s still not perfect. I might try Armour. I just can’t get to a thyroidexpert right now (he’s too far away).

I just got my blooddraw from last week, and the Tpo-ab are at 150 now.. I guess the 2500 are ether in the csf or it was a measurement mistake.
I’m also positive at ANAs 1:160 . Not sure what that means.
 

BeADocToGoTo1

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Thank you @Gingergrrl and @BeADocToGoTo1 !
I am actually very sensitive to thyroid medicine. It took me 1 1/2 years to find the right dose and it’s still not perfect. I might try Armour. I just can’t get to a thyroidexpert right now (he’s too far away).

I just got my blooddraw from last week, and the Tpo-ab are at 150 now.. I guess the 2500 are ether in the csf or it was a measurement mistake.
I’m also positive at ANAs 1:160 . Not sure what that means.
That is good news about the lower values, but still elevated enough to get help looking into Hashimoto. The ANA value could also be related to thyroid autoimmune, but could also point to a vitamin D deficiency.
 

Gingergrrl

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Also known as an 'experience specialist'...:hug:
That is me ;)

Thank you @Gingergrrl and @BeADocToGoTo1 ! I am actually very sensitive to thyroid medicine. It took me 1 1/2 years to find the right dose and it’s still not perfect. I might try Armour.
I have taken Armour since 2013 when I was diagnosed with Hashimoto's and have never tried any other thyroid med. My Endo prefers it in most cases and I actually didn't know too much about it (back at that time). Recently we have had to raise my Armour dose but my Endo thinks it is actually b/c I have problems with malabsorption (with some meds and supplements) vs. that my thyroid has gotten worse.

I just got my blooddraw from last week, and the Tpo-ab are at 150 now.. I guess the 2500 are ether in the csf or it was a measurement mistake.
Were you able to find out if the TPO Abs were from the blood vs. CSF?

I’m also positive at ANAs 1:160 . Not sure what that means.
My ANA was also 1:160, speckled pattern, prior to my treatments. It is a marker of autoimmunity although it is a general marker and does not specify a specific diagnosis.

The ANA value could also be related to thyroid autoimmune, but could also point to a vitamin D deficiency.
That is interesting and I had never heard that an elevated ANA titer can relate to Vit D deficiency. I supplement 10,000 IU's of Vit D per day and am still currently below the normal range on tests (and am testing Vit D again next week with my other blood work for my Endo). He also thinks this is a malabsorption issue (in my case).
 

BeADocToGoTo1

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...
That is interesting and I had never heard that an elevated ANA titer can relate to Vit D deficiency. I supplement 10,000 IU's of Vit D per day and am still currently below the normal range on tests (and am testing Vit D again next week with my other blood work for my Endo). He also thinks this is a malabsorption issue (in my case).
It was more to highlight that ANA could mean many different things. I would not make a Vit D decision on that. Since vitamin D is fat soluble, and if you do have issues breaking down fat, this could impact Vit D absorption (and Vit A,K,E,CoQ10). Of course other cofactors like magnesium are important. At 10K per day perhaps you are only absorbing a fraction of that, due to some form of malabsorption, otherwise you would think that it should be noticable in the blood work. At those supplementation levels it would be good to check:
  • vitamin K
  • calcium
  • albumin (for corrected calcium calculation)
  • ionized calcium (bound to other minerals)
  • osteocalcin (vitamin K dependent calcium binding protein)
  • parathyroid hormone PTH (helps regulate calcium, vitamin D, and phosphorus levels in the body)

Good luck with the endo.
 
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Were you able to find out if the TPO Abs were from the blood vs. CSF?
No sorry. I’m still waiting for the final report.. My GP suggested to try some cortisone. Have you tried that? I read in your story, that IVIG has helped you. I wonder if I might be a candidate for that.

Merry Xmas :)
 

Gingergrrl

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At 10K per day perhaps you are only absorbing a fraction of that, due to some form of malabsorption, otherwise you would think that it should be noticable in the blood work.
I agree and we suspect that I am only absorbing a fraction of the amount of Vit D that I am taking (10,000 IU's per day). I am doing my blood work tomorrow morning for my Endo and he is re-testing the Vit D.

At those supplementation levels it would be good to check:
Thank you for that list and I bookmarked it for the future. At the moment, my Endo is mostly doing blood work to check my thyroid levels and Cortisol/ ACTH levels (so he can adjust my thyroid med if needed and determine if it is safe for me to re-start my Cortef taper). He also tests all the basic stuff like CBC, CMP, Iron & Ferritin, etc.

Good luck with the endo.
Thank you and I will see him in early January and can ask about some of the other tests you listed (and I think some of them like calcium and albumin are part of the basic panels).

No sorry. I’m still waiting for the final report.. My GP suggested to try some cortisone. Have you tried that? I read in your story, that IVIG has helped you. I wonder if I might be a candidate for that.
No worries @Canned and I had just been curious if the Hashi's autoantibodies were from your blood vs. CSF. I did (and still do) take hydrocortisone (Cortef) since mid 2015. I started it in a desperate attempt to get allergic reactions and anaphylaxis under control (by a different doctor, not my Endo). I am still in the VERY long process of tapering off Cortef and have gone from 15 mg/day to now 3.75 mg/day. I keep having to stop the taper when I have signs of a pending adrenal crisis. If my Endo gives me the go-ahead at my next appt, I'll re-start the taper.

And to answer your other question, it was high-dose IVIG that put my MCAS and allergic reactions into remission in 2016 and they have never returned. I had a lot of other positive results from IVIG as well which led to me starting Rituximab in 2017. I stopped IVIG in 2018 and now only get Rituximab infusions 2x per year.
 

max_yazhbin

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Hey,

I just got the report from my last hospital visit. They checked my cerebrospinal fluid (csf) for Antibodies and found the Tpo-ab to be 2503 U/ml.

The Tpo-ab in the serum are at about 175.

Does anyone know if this could be related to my currend health situation? Or at least have comparable numbers for me?

Canned
I also had high anti-TPO ab, mine got up to 190, I still don't know why exactly, but I know when I stopped eating fruits and grains, I felt much better and my anti-TPO ab went down. I do have EBV markers. A spinal tap is kinda extreme, did they do extensive blood testing beforehand?
 
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I also had high anti-TPO ab, mine got up to 190, I still don't know why exactly, but I know when I stopped eating fruits and grains, I felt much better and my anti-TPO ab went down. I do have EBV markers. A spinal tap is kinda extreme, did they do extensive blood testing beforehand?
Hey Max,

yes they did a big blooddraw before the spinal tap. But it didn‘t Show anything useful.

Happy to hear that you found sth that helps you :).

Canned