Positive antibodies and autoimmune conditions. Is my thyroid implicated?

[klicker]

On behalf of my daughter who is still detained in hospital following a psychotic event following administration of steroids (60 mg prednisilone) for vasculitis, does anyone know if her autoimune conditions are related to her thyroid? Of course she has seen the top Endocrinologists who have ruled out thyroid disorders based on their usual criteria. She has positive DS DNA antibodies and positive MNDA antibodies which they are saying is autoimmune Encephalitis and she is awaiting immunotherapy for that. She also has dilated non responsive pupils and rheumatology are not convinced that its lupus (based on the DS DNA antibodies).Her psychosis has been suitably treated with antipsychotics but they are hoping the immunotherapy will relieve most of her symptoms. She is due to go for a thyroid scan, possibly ultrasound next week to examine a nodule. Does anyone see any links or are we off the mark linking it to thyroid disorders? Maybe the scan next week will provide stronger insights?

[Marz]

...so sorry to hear that your daughter is going through such a difficult time - good that she has you looking out for her and possibly giving the docs a nudge here and there.

I am not knowledgeable about the particular tests your daughter has had - but am aware that when you have auto-immune Thyroiditis - Hashimotos - then other auto-immune issues can be present. I have Crohns and Hashimotos. Do you know if your daughter has had her thyroid anti-bodies tested ? Anti-TPO and Anti-Tg are the main ones.

Have also read that some drugs and possibly the ones they are giving your daughter can interfere with her thyroid treatment and impair it. If she has a scan then as you say that may reveal more. Sadly the medical profession rarely link lots of conditions to the thyroid - but stay with your Maternal Intuition and see what happens.

Do let us know how things work out.....and do hope your daughter will soon be well.

[klicker in reply to Marz]

Hi Marz, yes both thryoid antibodies tested (still waiting to get copy of the results I requested though, other than the Doctors version, "they're normal"). Some of her drugs are indeed contraindicated with thyroid problems yes and its all a balancing act at the moment. thanks for your good wishes. She is getting better and I am sure things will work out. Thank you

[vajra]

I hope your daughter does well K.

It's pretty common for the thyroid to come under attack from the immune system, but from casual reading it seems that this is often the result of more general immune disturbances which may follow from gut problems. e.g. leaky gut. Which many medical conservatives tend to poo poo despite lots of practical evidence to the contrary. (immune issues commonly follow from chronic gut problems)

There are specific anti-thyroid antibodies which are tested for to determine if the thyroid is under attack from the immune system, but personal experience (i lost my thyroid to a cancer which likely originated from advanced but repeatedly undiagnosed thyroid auto immune disease) suggests that the tests are not very reliable.

I don't know what the facts are, and so can't say whether or not the thyroid tends to fall victim to more generalised auto immune disturbances - although my suspicion and experience (i developed a number of likely auto immune related illnesses when my thyroid was going down) suggest that this is pretty likely.

Auto immune issues have a (superficial) tendency to manifest as separate 'diseases' which in medicine have typically been treated symptomatically and by different disciplines/specialisations using differing methods. The reality judging by this seemingly eminent Israeli specialist (somebody put this video up some months ago) and by the fact that autoimmunology is an emerging discipline of itself is likely quite different: youtube.com/watch?v=iM5B6EA...(Not working as expected?) Also: www2.tau.ac.il/Person/medic...

He's pretty clear to the effect that most auto immune conditions have a common basis (even if they manifest differently depending on the part of the body attacked), with the result that treatments that work for one or other sort of percieved auto immune disease tend to work for most. Also that they need to be holistic in nature.

Purely speculative, but my instincts if I had serious auto immune problems would be to try to find a specialist working from this sort of perspective, and using integrated/holistic methods.

Who knows what the reality is regarding treatment approaches? The field has the feel of one where there may be big differences in treatment appraoches between what might be regarded as the leading edge progressives, and the traditionalists....

This is by no means fact based or a recommendation - but while treatment of symptoms using high doses of steroids etc may well be necessary in the short term, longer term there may be reason to think it's not a solution. As my opersonal non expert experience again suggests that they mess with thyroid and other metabolic functions. Which could conceivably actually further disturb the immune system...

It's just a possibility, but it might be productive to by working in from the above group establish what the most progressive modes of treatment for auto immune illness are, where around the world they are practiced (in what hospitals and medical schools) and if it makes sense to use the resulting information as a template against which to screen proposed treatments offered by whoever...

ian

[shaws Administrator in reply to vajra]

This video was EXTREMLY interesting to me. Thanks for posting.

[editfmrt in reply to shaws]

Basic common sense versus stupidity of the current system in my view. I have often wondered why autoimmunity is treated by different disciplines as I take my sister to gastro, endo, neuro and rheumo appointments and NONE of them speak to each other or even read the notes from each other properly. Then blame the patient for costing too much! Sadly we are many years away from getting this farcical situation sorted.

[Marz in reply to editfmrt]

...so very true ! Also research is always from one discipline only. Think each consultant is very possessive of his own 'firm' as they used to be called when I was in hospital in the 70's....so the Registrar et al worked for him and dare not step outside the box.

[klicker in reply to vajra]

Thanks Ian both for the context and video. I have been moaning about the non holistic approaches of the various specialisms that my daughter has been processed by and it all feels very disjointed (although I have to say some of the consultants are phoning and talking to each other and they even phone me so this is good). They are trying to get her off the steroids but they dont want to do that until the course of immunotherapy is complete but her poor system is really being put through the wringer e.g. to be on steroids she is on supplements which are seriously harming her lovely teeth. Its all very costly and yes it seems that more harm than good might be done the longer she is on these dreadful drugs. I will try to research this progressive approach in the relatively new discipline of autoimmunology as you say for a template but its hard to keep on top of it all at times but its important not to leave it to the professionals all the time. Thank you

[Marz in reply to klicker]

Having watched the video it reminded me of LDN and its success with auto-immune diseases. Could it be worth exploring ? I know it wasn't mentioned - it's just the way the mind works !

[Hidden]

Hi Klicker,

Forgive me for asking, but was this thread relating to your daughter? It sounds very similar...

healthunlocked.com/thyroidu...

If yes, I was wondering if you managed to get to the bottom of the B12 angle? It seemed like that was going to be a factor since the one injection she was given seemed to help.

Hampster

[klicker in reply to Hidden]

Hi Hampster. Yes that is the same thread. And no, I haven't been able to convince anyone and we have been through many consultants and departments. Thank goodness for NHS in this regard. Several specialists look at her bloods and say B12 levels 'normal' when I mention the fact that the injection given by mistake helped. So no one has put any weight against B12 deficiency nor the fact that it was a consultant psychotherpaist who had first mentioned that it might be the underlying factor.after he had detained her for 5 months and couldnt pin any psychiatric condition to her

[Hidden in reply to klicker]

Klicker, all I can do is despair that they are potentially ignoring what is right in front of their faces. The serum B12 test is unreliable, especially if the test was done after the injection. Is there any way you could convince someone at the hospital to test MMA and homocysteine? Or even the antibody tests - intrinsic factor and parietal cells - since she does have autoimmune conditions?

[sky00 in reply to Hidden]

i as well was told my B12 was normal, can one say if an over the counter B12 supplement say from healthspan or now or swanson's etc would be sufficient to take in larger doses then they say, or does it have to be a doctors shot??

[Marz in reply to sky00]

Dr Sarah Myhill states on her website that taking B12 under the tongue can be as effective as injections..... drmyhill.co.uk

[sky00 in reply to Marz]

sorry do you mean regular B12 supplements under the tongue--or something else?

[Marz in reply to sky00]

Sorry did not reply to your post as I did not receive an alert ! Glad you found her site though. Her website is like a Medical Encyclopaedia and well worth a visit for everyone as most conditions seem to be well covered ! She is very busy and very booked so do hope you are able to see her. Think that is why she does such a comprehensive site for those that are not able to reach her. Yes I did mean regular chewable supplements - as you know now from the site ! Good Luck !

[sky00 in reply to Marz]

wow just looked at her page --very hopefull to perhaps contact her as she is not far from my neck of the woods and she seems just up my street thanks for this link marz...

[Hidden in reply to Hidden]

Also, do you know what her actual levels were (with ranges) for B12, folate and MCV? The MCV wouldn't correct as quickly as the serum B12 after an injection.

[editfmrt in reply to klicker]

Hi kicker

Please please please look at B12 deficiency as a factor in this. Hampster and others have given really good advice. If it is a while since she had her B12 jab it would be worth getting her tested again to get a proper disgnosis which will help with future treatment and the attitude and lack of knowledge of the medics. Martyn Hooper of the Pernicious Anaemia Society will be able to help point you with the right tests and treatment options. You can google for their website. As others have said too, I would look at T3 as an option for optimal thyroid treatment especially where mental health is impaired. All this is related and yet so often goes unrecognised by our health service. Wishing you well.