I am currently in the process of doing something about my fatigue, and weird symptoms I had for years. January 2018, I was tested by a rheumy because I was afraid of having Sjogren's. My symptoms were dry mouth at night. I had a lot of antibodies tests then and all of them said negative. I got a referral from my dentist who was concerned about my dry mouth and oral specialists did blood tests, that tested ANA, ENA, some antibodies. Everything was negative except ANA which was 1:80 this time.
I had a copy of test results and the report to my GP sent and it did not include anything about my ANA result. I am 25, male, live in London and during that time in January had my right arm burning hot for no reason, my joints were warm and cracking. This was why I went to a rheumy. I also get sunburned really fast. I went to Norway recently and spent whole day outside resulting in a lobster-like appearance. My mother and father also tan red initially. My father suffers from dry eyes and mouth for 10 years, I recently asked him because I was suspicious of my symptoms.
I also did Promethease report via Ancestry that has shown Rs10488631 (C; C) which is 1.8% frequency in Caucasian population. 'has been reported as a possibly causative SNP for systemic lupus erthymatosus (SLE), based on a study of ~700 Swedish patients'
Is such an ANA worth to bring up to my GP? I am deeply suspicious of my fatigue, sun sensitivity and now ANA result.
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darkknightlt
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I Was diagnosed with Hashimoto, felt rubbish all the time very dry and thirsty at night my endo sugessted to see rheumatologist, ANA test positive, lip biopsy after and diagnosis of Sjogren
I had my thyroid antibodies for hyper and hypo checked by an endo in January where my free t3 was a bit low but I was under low calories diet and hence why it was this way.
I've been posting on another topic about my history of gut, autoimmune, thyroid and sleep apnoea based fatigue - in the context of the great improvement brought by starting CPAP therapy for sleep apnoea - probably as a result of lowering my night time cortisol levels.
This is just to say that when I was really struggling with undiagnosed but subsequently proven auto immune thryoid disease and hypothyroidism that I also had a positive ANA titre.
It was bit worrying at the time, in that while it requires other diagnostic signs to confirm a diagnosis it can also be suggestive of developing lupus. Sjojren's seemed also to be in the frame. (more than 20 years ago)
My then GP flat ignored it as evidence of underlying thyroid or other auto immune problems ('test, it say.....') , but she was dead wrong as the pathology report many years later following a thyroidectomy for a thyroid cancer and advanced auto immune thyroid disease eventually proved.
The good news if my case is remotely typical is that while an ANA titre seems fairly definitely to be indicative of underlying auto immune disturbances, it doesn't in isolation seem necessarily to imply the development of any any of the more severe auto immune conditions...
I am very worried about GP taking this seriously. I read online that 1:80 happens quite commonly among normal people but I should probably come in, tell them that the consultant supposedly, highlighted that result, and simple come over with my symptoms and ask how it relates. I know that doctors hate it when patients come in and tell them what to look for...
This is quite long. The conclusion is towards the bottom.
It's basically setting out why my doctor's ignoring an ANA titre back in the 90s likely wasn't a good call.
I have to say I never had much luck informing a reluctant doc of information I'd found, even when what I was trying to communicate (actually asking for help with) was subsequently proven correct. It seems like you're often either pushing on an open door in these matters, or it's fimly closed.
I know that in the case of my ANA titre (and I can't remember anything about the values in my result - but the numbers and associated symptoms must be important too in deciding how significant it is) the problem was that the doctor saw it as a necessary but in isolation insufficient part of a diagnosis of lupus or somthing similar.
This tunnel visioned focus on more serious disease meant that in absence of the other signs confirming the diagnosis (can't remember what they were) the ANA titre was ignored.
When so far as my more qualitative information and my obvious symptoms were concerned (which were repeatedly ignored) it was suggestive of a signfificant underlying auto immune disturbance.
I'm still here 20 years later with no sign of lupus or anything of that ilk, so the call regarding the presence of one of these more serious diseases (!) was so far as it went correct.
The problem however was that the failure to respond to the signs and to advise an approach to settling my immune system meant that I missed the window of opportunity for a decent shot at stopping the progression of my auto immune thyroid disease.
Ten years of grinding illness and fatigue later (undiagnosed secondary hypothyroidism was also in the mix) my career was gone, my thyroid was destroyed, and I had a dangerous form thyroid cancer.
Auto immune thyroid disease also went undiagnosed in the interval - despite a fortune spent on consultants and repeated thyroid antibody tests.
It's unclear at this point whether this latter was the result of an inherent unreliability in thyroid antibody testing, or just that the medics involved and/or the specific lab made a bags of running the tests.
The pathology report following the thyroidectomy in 2005 found (on microscopic examination of the removed thyroid) advanced auto immune thyroid desease and a Hurthle cell thyroid cancer.
There's perhaps more to your situation than this, and mainstream medical thinking/available options may changed since I was there back in the mid 90s - but I wasn't then and haven't become aware of any mainstream medical teratment that stops eg Hashimotos or any other auto immune disturbance anyway.
There are however actions we can take on our own which can be very helpful or even reportedly deliver a fix - but they require early and serious commitment.
I didn't become aware of this line of thinking soon enough...
What in retrospect seems capable of working all else being equal (judging by books out there now written by some claiming to have achieved this fix) is a squeaky clean regime to eliminate whatever foods or other triggers might be setting off the immune system.
Also supplementation to heal the gut, and to restore low levels of key minerals and other nutrients.
Mind work and lifestyle changes to bring some rest and calm (to reduce chronically raised cortisol levels), and supplements like phosphorylated serine which partially block the action of cortisol can also play important parts.
Conversely, low cortisol/adrenal exhaustion can be a signficant factor in fatigue and hypothyroidism and require the opposite treatment if the situation has run for long enough. The gut also needs thyroid hormone to work properly.
This group of approaches has long been referred to by alternative practitioners as 4Rs treatment.
It's claimed on occasion to reverse (if it's not progressed too far) thyroid damage in these situations too - to be an alternative to a too early prescribing of replacement hormone. (which may mean the thyroid reduces output accordingly, so that long terms replacement is required)
When the auto immune attack is let continue for too long the damage may not be capable of being reversed.
Secondary hypothyroidism (it seems to be far more common than was the case) as in my situation seems often to surface in these situations - where the thyroid is making plenty of hormone, but it's not being used because of chronically high levels of cortisol or other problems. (high cortisol may be caused perhaps by stress/sleep apnoea; other problems by stuff like metal or other toxicities, inherited weaknesses in enzyme reactions involved in hormone conversion and use etc)
A quick google suggests there's a lot more books out there now claiming success in stopping auto immune disturbances by means of this sort, there's also sources claiming that the option to test for and diagnose auto immune disturbances early enough for reversal to be possible is now available.
In my case the immune disturbances (too late to save my thyroid) turned out to be driven by food senstivities (especially to wheat/bread, and to an unidentified additive used in confectionery and many processed foods), and a badly upset gut - which itself seems to have been the result of a combination of a very stressful work situation and post traumatic stress after a bad car accident.
The latter tipped it all over the edge into full blown chronic fatigue.
Sleep apnoea may also have been a contributor to the high cortisol levels which likely were the underlying driver of the whole deal.
The pity is that back in the mid 90s there was nothing like as much material about. I was groping in the dark and thinking primarily in terms of thyroid, and as above didn't get stuck into a regime of this sort soon enough to save my thyroid, or to prevent my developing some food sensitivities.
The angle which judging by my experience needs care is that mainstream medicine likely won't make a diagnosis of anything much based on an ANA titre in isolation, but they won't either (unless maybe you encounter a holistically and progressively minded doctor) steer the patient towards 4Rs style holistic treatment of the sort which might well reverse the underlying condition.
This is another case of medicine hanging around waiting for serious disease to develop, it's one which cost me dearly....
So much thanks for putting in the effort. I am aware of Autoimmune Paleo Diet, I had considerations of going on it last December but it seemed too restrictive. I indeed have high levels of cortisol, measured by blood, and have issues sleeping. I will re-read 10 times on what you wrote and try to implement the changes. I have been very lazy for the past few months and felt progressively worse. I will consult with appropriate doctors and get to the bottom of it, hopefully soon. I was told by the family friend doctor to go straight to rheumy, she said ANA can be raised if we experience lots of stress in life, or eat diet that sucks. I had negative ANA just a few months ago and it seems my body is signaling that things are going awry.
By the way, you sound like a great person, I PMed you.
Thank you for that, I am sorry to hear about your thyroid.
I too have lived with a number of unpleasant symptoms which point to some autoimmune condition developing for almost 2 years. Except for a positive RA factor and a thyroid ultrasound that indicates possible autoimmune activity, nothing was showing. Recently, however, I too had a weakly positive ANA.
I think it can take a long time before antibodies that would allow a precise diagnosis show up. However, even a low number of autoantibodies over time can cause damage (see water and stone). Obviously most people are diagnosed when damage has already occurred. I wonder if doctors even know what the very early stages of an autoimmune condition look like as they are very difficult to pin point.
I have decided to try to stop and reverse what is happening to me. I am giving the Coimbra protocol a shot. I am not doing this by myself, I am under medical supervision and I have been on this alternative theraphy for the last 2 months. I no longer get hit by fatigue, I am only tired now and almost normal at times. No more pins and needles under my feet. No more head aches. Still dry mouth, eyes and nose, but not as bad. I no longer get inflamations in my joints. So far things seem to be improving, even my thinking is less foggy. I have my next appointment with my protocol doctor in September, when after doing some blood tests we will reassess the situation.
To use your expression, I do not want to hang around waiting for a serious disease to develop. It is true that there is a lot of information out there and we all need to take advantage of that.
Thank you too M. I don't know the protocol, but it's a definite possibility that he's on to something.
One of the earliest effects of gut inflammation seems to be that we have problems absorbing stuff - so perhaps the very high doses he uses are safe provided there's medical monitoring to ensure that actual quantities in circulation remain safe?
Think you are right on the nail on the need to act before organ damage/serious disease develops, and that stock medical tests designed to idetify quite extreme disease conditions won't necessarily pick up the chronic low level immune disturbances that do so much harm over extended periods of time.
The problem is that once there there's not necessarily any way back...
I've over time come to realise that with mindfulness the body tells us most of what we need to know anyway. That eating stuff that it doesn't like tends to cause an immediate slump in energy and mood, and vice versa.
There's those that like to knock kinesiology, but in my experience it's another reasonably effective way of identifying not just foods but also other materials we don't react well to.
It doesn't have to cost anything if somebody will help you out (which might explain why it gets criticised)...
Dr Coimbra says that up to 10,000 iu is safe for the general population. However, the doses for people with autoimmune conditions on the Coimbra protocol can be "outlandish", nothing like what you see in the paper for which you post the link. This is because people with autoimmune conditions tend to have different degrees of vitamin D resistance. The dose for each patient is adjusted according to the blood test result, so it is different for everyone. It is important to be monitored for two reasons, the first is that, to stop the condition from progressing, the appropriate dose needs to be figured out, the second is to avoid kidney damage which can result from vitamin D toxicity. So with an appropriate diet, daily minimum of 2.5 litre of water with low calcium content and monitoring we avoid kidney damage which can result from vitamin D toxicity.
Hi M. See below. Thank you too for setting this ball rolling.
There likely are other reasons, but people with immune disturbances often have problems absorbing supplements in the gut - and require high doses to get a result.
The medical supervision I'm guessing might result in the dose being reduced once the blood values were approaching 'normal'...
Hi DK. I skimmed the link M put up on the Coimbra protocol below (typo - meant above) but failed to recognise its significance. That PubMed paper link pointing out that the current RDA for vit D is far too low as a result of a data analysis error set it all in a very different light, and came as a bombshell for me.
An ah-ha moment.
Thank you!!
As usual for others looking in - I'm not a doctor, anybody reading this should read the linked pieces and more, and draw their own conclusions before deciding anything.
I know that RDA's are often highly questionable/very conservative, but the implication of that if true is that of the order of 6,000 IU+ and not the RDA 600 IU is needed for an adult to avoid the the risks associated with low vit D.
Especially the poor immune regulation and increased tendencies to inflammation it's associated with.
It's seems like solid information. The pity is that even if it's correct history suggests that the system is unlikely to come out and acknowledge it's the case.
More likely we'd see no overt omissions, but a slow but steady raising of the RDA by the powers that be.
Much as in the case of issues like dental use of mercury, thyroid testing, vaccines and fluoridation of water there's far too many powerful interests with exposure or other interests (governments and medicine to start with) to anticipate otherwise.
Hopefully not...
My situation is that my thyroid replacement with T3 is working well, and I can stave off immune responses and keep control of my blood pressure by carefully avoiding problem foods like wheat, milk, sugar and additives.
The point though is that it's all very twitchy and reactive. I also suffer from restricted nasal breathing likely caused by inflammation.
I'd put this down to the likelihood that I'd accumulated sensitivities over the many years when my immune system, thyroid and gut were in terrible shape.
The possibility that this raises however is that vit D could well if not all be at least a significant part of the reason for this lack of immune stability.
My consultant has on numerous occasions decided (as is typical in patients with immune and thyroid funnies) that I was low on vit D (also calcium), and supplemented both.
I saw moderate benefit and as a result wrote vit D off as a being a fundamental variable in my situation, but he's been using the old and by your paper incorrect mmol/L blood and RDA numbers.
Which again if the above is correct could well explain the lack of a more significant benefit.
A couple of related thoughts pop up.
Taking too much vit D (one of the major US clinics mentions 60,000 IU as a toxic dose = x100 the current RDA, but problems may arise (?) at lower doses) as M said can lead to problems with gallstones as a result of raised calcium levels.
Perhaps my low calcium is the result of not enough vit D??
Might it even be that osteoporosis could in some way be linked with low vit D?
Anyway. The bottom line for me is that I'm going to trial vit D at around 6,000 IU.
Dr. Coimbra on his webpage is quite clear (hope he's right : ) ) that 10,000 IU is safe for any normal adult, but better safe than sorry.
You must take vitamin K2 with vitamin D3. K2 shuffles the calcium to the right places. I was told this by a male nurse on an NHS, what a surprise it was. He said to never use D3 alone. I do not see why 10K a day is high dose. Being in the sun for a couple of hours probably generates more than that.
Take vitamin D softgels rather than capsules. Very important to take magnesium (malate, glycinate are quite gentle, chloride is also ok if you, like me, are not that sensitive) and aim for at least 400 mg of elemental magnesium per day. It is good for your bones and helps with activating your vitamin D. Better to get calcium from food, the supplements they prescribe are not good. I hope things improve for all of us
Thank you for that M, it sounds as though you're up to speed in this territory - perhaps because you are being medically supervised and getting good results so far from your trial of the Coimbra protocol.
Good luck with your situation too.
I've perhaps said it elsewhere, but despite my thyroid, auto immune and fatigue problems costing so much in normal life terms and causing so much illness I tend to see it as our being taughts lessons in life.
It depends on what our path is, but the possibilities range from learning to manage our body, lifetsyle and health, to developing our intuition and connection with guidance, to taking responsibility for ourselves and back from hierarchical systems of authority (the basis of the mass awkening that the world so badly needs now), to helping to raise awareness of some of the crazy stuff going on in agriculture, food processing, medicine and the out of balance lifestyles so many are trying to live, to contributing to a more holistic understanding of health issues of this sort etc etc.
I'd say DK that some googling on holistic appraoches to solving auto immune thyroid and more general conditions would be worth while.
Don't hang on the detail of what I say, it's just a broad brush outline of my experience and what I have read.
Hopefull these people and outfits offering tests and writing books on how they cured their xyz are not blowing hot air.
The takeaways I'd say are don't expect that a doctor will tell you what to do, don't let the situation run as the possibility is that it's doing damage to thyroid or other organs, read like mad to understand what people are now doing, and finally - don't underestimate how much difference the elimination of problem foods etc can make, but don't underestimate either how much committment it can take to find what's causing the bother, and to get a lifestyle and diet under control.
Take a look at the other thread which links sleep apnoea to high cortisol and hence auto immune trouble. There's other conditions that could conceivably play a part too I think - like Lyme disease, mecuryc toxicity and the like so keep on reading and thinking.
I do know in my own case that the paleo/organic approach (although I need come carbs which I tend to get from rice and potatoes) has proven not just helpful but a necessary means of survival.
Bread, wheat and processed foods (some additive or other) are particularly problematical for me, if I kept on eating them my blood pressure would be dangerously high and I'd be serious ill and fatigued in a mnatter of weeks...
It'll feel that way, but if the problem is sensitivity to specific foods the chances are that even minor transgressions (eating stuff that's known to cause problems) have the potential to kick the immune system off.
There's probably scope for variations, but my own situation is that eating for example a few slices of standard factory produced white bread will trigger dull ache in the solar plexus, and a definite rise in blood pressure (probably caused by a release of cortisol in response to the immune reaction - my tinnitus is also a good indicator that the blood pressure is changing) in the hours afterwards.
Less so now that things have calmed down, but up until some years ago it would see me out the next morning in these huge hive like itchy patches (like somebody stuck 75mm dia circles of 2mm rubber under my skin) - medically known as urticaria.
Perhaps the good news is that these allergies (presuming the problem relates to allergies - it could be down to foods, but also as before chemicals and other materials in your eg home or work environment) so far as I know tend to be pretty specific.
We get sensitised to something, and from there onwards it causes us problems. It's possible to become sensitised to multiple foods, but it isn't necessarily the case.
The trick generally seems to if possible by very rigorously following a diet that takes us down to a few basic foods (the paleo meat + veg + perhaps moderate amounts of carbs is not from my experience a bad place to start) to get your immune system settled down so that the symptoms subside.
This may take a while, mine settled to it's current twitchy but fairly stable state over a period of months or even years - although I may unknowingly have been eating problem foods on occasion.
It can be even with vegetables that you somehow get sensitised to one, so it may take some trial and error. Not all vegs, but some for example have problems with stuff like tomatoes and even potatoes.
That way you can then start over time to re-introduce some foods one at a time. If the background noise has been reduced, then the reaction to a problem food should be fairly evident.
We get far better at listening to the body, and with time we just know what the problem stuff is and don't want to eat it.
The cacophony of symptoms if we don't first get things calmed down is such that it's very hard to know what's causing what. Whatever reaction we get from a food is lost in the background noise.
There's lot's of how to books out there, and this is just me talking off the top of my head - so as ever it pays to get reading.
I mentioned before that stuff like stress, sleep apnoea, the food sensitivities now being discussed, toxicities like mercury and maybe fluoride and a variety of disease conditions can trigger immune disturbances too.
if you're working back from something like chronic fatigue symptoms, then the list of potential causes gets wider again.
Foods can cause problems in other ways as well. Sugar for example causes surges and slumps in metabolic activity which stresses our regulatory systems, it can also lead to the over growth of bad bugs in the gut.
Problem foods like transfats, the now commonly used flavour enhancers and additives of all sorts can cause their own specific difficulties in addition to sensitisation.
There's issues we tend not to consider much which I've seen throw up symptoms of this sort in others - stuff like in herited tendencies (some simply have a bullet proof constitution which seems to handle whatever is thrown at it, others seem speactacularly disconnected from what their body is telling them), candida/out of balance gut bugs (may cause inflammation), lyme disease, gut parasites, mind state, the already mentioned sleep apnoea, over achieving/burning the candle at both ends at work etc etc.
The good news is that if we start to search and work hard at it in good faith it seems as though our higher intuition/guidance may kick in - stuff eventually (it can take quite a while) falls in place to show us what is causing the problems.
Like any other journey (because it's in the end about our learning from life) the key is to take responsibility for ourself, make our best call and take the first step. Then as we leaarn pass it on to others to help them.
It flows from there on as long as we stay committed...
It seems like the only thing we can do is to eliminate as many variables as possible. So, start fresh with known non-reactive for most people, foods. Then depending on how we feel, react to this new experience. It is a shame that genetics did not advance that much yet, I have Promethease report me a bunch of risks, but not what to do about it. Or what diet is best for my genes, etc. And doctors only have 10 mins per patient, so getting advice from them is an incredible crapshot.
Hi DK. I think unless they are holistically minded and have a special interest that doctors don't know much in this territory anyway.
Getting our heads around this and the need for pro-active (but co-operatively minded) self responsibility is perhaps half the battle.
It's been with the help of long reading of forums (there's a lot of background noise, but people with important information that slots in place pops up from time to time, read for long enough and a picture often starts to emerge from the murk) and the odd helpful on occasion when poked doc certainly been where my breakthroughs have come from.
It'd be nice if taking more vit D (with K it seems) took took the reactivity out of how the immune system reacts to foods.
I wonder is it that foods that cause a reaction are in some sense genuinely harmful to the body, or is simply that the immune system when disturbed shoots buckshot all over the place?
I've used it on and off for years. It definitely helps to calm and upset stomach, and seems to calm responses to eating a problem food that triggers an immune resposne in the short term.
I can't say whether the longer term claims about immune stablisation and even of stopping rheumatism stand up, but the above has quite a bit to say on the topic.
There's quite a lot been written by now on the health benefits of maintaining a correct body alkalinity/ph - that acidity promotes all sorts of problems. Bicarbonate of soda it seems may help with this, but it's worth reading up the topic as there are many foods best avoided which promote acidity.
One to watch out for is that I think it contains quite a lot of sodium, there are conditions where it's regarded as important to minimise sodium intake...
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ANA results question
22 year old female in a 80 year old body...
A breath of fresh air - positive
Unsuppressed TSH and positive Anti-thyroid Antibodies 
