What is really wrong with our immunesystem in AI? - NRAS

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What is really wrong with our immunesystem in AI?

Simba1992 profile image
132 Replies

Here is a short review that may help to clarify the big picture and also see what questions are still unanswered in understanding AI illnesses.

quora.com/Are-autoimmune-di...

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Simba1992 profile image
Simba1992
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132 Replies
helixhelix profile image
helixhelix

I like the "disproportionate' description, much better than saying over active. Sensible stuff. ( I call my immune system wayward...)

Thanks for posting Simba, fascinating stuff; still so much they don’t know about it too 😐x

Hi simba. I think this article sums up the causes of autoimmune diseases pretty well. Underlying infections, allergies and nutritional deficiencies. However, they forgot to add toxins? Unless i missed that. I believe one issue leads to another as we have previously discussed.

I think our immune systems are reacting (with pain, inflammation etc) to let us know that something doesnt belong in our bodies (infection, food allergy and toxins). Nutritional deficiencies will also fuel the problem.

How many people with autoimmune diseases get treated for underlying infections or toxins etc? Is this why chronic disease is so chronic? X

helixhelix profile image
helixhelix in reply to

You also glossed over genetic predisposition and the role of sex hormones which are both flagged up too.

in reply to helixhelix

I do believe hormones play a role and are sometimes diet related. Insulin factors. I also think nutritional deficiencies impact on hormones.

My belief is that infection plays a stronger role in chronic diseases, and knocks off many systems in the body. I feel chronic infection is what depleted my nutrients, hampered my thyroid, immune and detox system. Of course all of this would affect my hormones too. Diet does help though.

Whether there is a genetic factor i am not so sure. I think my drs right and genetic illnesses are rarer.

helixhelix profile image
helixhelix in reply to

I'm not saying it's a genetic illness, but that you need to have a genetic predisposition which is mentioned in this article.

After all, although AI diseases are getting more common (particularly in developed countries) there's still a huge proportion of people who get infections, have a rubbish diet, are obese, are exposed to toxins and don't get anything. And there are quite a number of super healthy people who get AI diseases too.

in reply to helixhelix

Thanks for clarifying. I honestly dont know about the genetic components. Maybe in a sense... I notice that people with more relaxed personalitys who sleep well and dont suffer from any real stress tend to keep well. I do believe personalitys play a part. I think thats maybe why some people can get away with an unhealthy lifestyle and recover from infections.

Simba1992 profile image
Simba1992 in reply to

The role of internal and external stress in autoimmune cannot be overstressed. It has been shown in psychological research that our stress tolerance varies from individual to individual. Some of us react to stressors more with our body than others.

in reply to Simba1992

Yes i agree. Stress causes havoc x

in reply to

At one time it was thought that different personality types got cancer, heart attacks, ulcers etc. 'Personality' sounds a very fixed thing. I prefer 'tendency too... 'which is more about behaviour than something unchangeable. I don't think anyone questions that stressed people have more propensity to illness, but very calm peaceful people get ill too.

in reply to

I just meant generally speaking. Not in every situation. I stated in a post above that i felt a variety of factors contributed to disease. I just answered helix on genetic predisposition. I do feel personality plays a role.

in reply to

fair enough.

Shalf profile image
Shalf in reply to

For Thinkoutsidethebox - I believe stress/anxiety was the culprit for my Disease. I could feel my body changing! Knew something was wrong. A post a while back asking what people thought caused their AI disease had some interesting answers. Stress was thought to be the leading cause of members on here.

in reply to Shalf

Thats a shame. I think the combination of stress and a virus (EBV)caused mine. It definitely played a role in my downfall 😣

Shalf profile image
Shalf in reply to

My nervous system is highly sensitive. Doesn't mean I'm a nervous person just highly sensitive to things others wouldn't be. Crowds for example stress me. They call it HSP. It was other things though, a breast cancer scare and a misscarriage were just a couple of the things that created stress. I guess it was inevitable the ball would burst! Now I am still learning how to cope with stress! Spoiling myself feels nice :) xx

in reply to Shalf

Thats a shame. I understand. I am very ill at the moment with an infection so any stress at all bothers me. I am trying to manage it better but the more ill you are the harder it is xx

Shalf profile image
Shalf in reply to

Oh my goodness, so sorry to hear that. Yes you are right, it's very hard when so unwell. Life tests us sometimes. I came back stronger and I have no intention of giving in to my illness. :) Xx

in reply to Shalf

Thanks Shalf. Fingers crossed i can improve. So glad your feeling stronger xx

in reply to

I didn't mean to pounce on you in any way

in reply to

Thanks for saying that. I do find online difficult sometimes. I feel things in black and white can be so easily misinterpreted. Also, you can even miss bits and pieces on these threads. I am very ill but try to watch what i am saying. I only post to try and help people. Basically, so they don't end up like me lol.

I feel if i had the acknowlege that i have now, then my health problems wouldnt have progressed to a severe stage. I just hope its not too late to try and reverse all the damage. I am still youngish. I like simbas post and i am trying to tackle all the root causes of disease. Fingers crossed🤞.

Simba1992 profile image
Simba1992 in reply to

I wish you all the luck. Take care of yourself this is the number one thing!x Simba

in reply to Simba1992

Thanks simba. Thats very kind of you. I hope that you also make progress. You definatly have all the knowledge xx

in reply to

I think communication generally can be hazardous and online you can't hear tone of voice, pace of comment or see expression. Yesterday I responded to someones post and read it later and it didn't say what I meant at all so I deleted it. I think on hear its worth the risk for understanding and friendly support.

Simba1992 profile image
Simba1992 in reply to

The key is in how we handle stress. Some of us get physically all worked up by small stresses while others bear stress with calmness and are able to work out things without a tummy ache or headache or other physical symptoms. This ability to deal with stress mentally is something that we learn growing up and need the help from those who take care of us. When we are born and babies stress is only shown through bodily discomfort, we need the care giver to calm our bodies primitive stress reaction. It is only gradually we learn to calm ourselves, and in this ability we differ greatly.

in reply to Simba1992

Oh yes. I absolutely agree that particularly if we were carried by a stressed Mother, and then the main care giver didn't give responsive, calming care, we have to learn strategies later on, which is much more deliberate and therefore harder.

Mmrr profile image
Mmrr in reply to

Personality can and does alter though as we go through life ?

Simba1992 profile image
Simba1992 in reply to Mmrr

Very little actually and the way we handle stress stays pretty much the same.

Mmrr profile image
Mmrr in reply to Simba1992

Yes, central traits are pretty stable throughout life, and these may be more important than peripheral traits, which can change in the way we manage ourselves.

But we can alter the way we handle stress, quite drastically.

I only need to look at my own life to see very major changes in stress management from being a young adult, to a 'mature adult' , to one approaching retirement age.

in reply to Mmrr

Unfortunately, i havent managed to change my sensitive nature and approach to stress since childhood. Thats good you have improved. I am sure its possible for some people.

However, i think the ability to improve how you handle stress depends on how ill you are too. It depends on your restrictions and quality of life etc. My health has always been bad and started to really deteriorate about 12 yrs ago. Now i can't handle the slightest bit of stress at all.

Mmrr profile image
Mmrr in reply to

Since becoming unwell I deal with stress often by avoiding it or removing myself from it. Otherwise I don't cope and can become unwell quickly. I think partly because my RA is not well controlled.

In my 30s , 40s and early 50s I was invincible and had a very busy demanding lifestyle, career and brought up 3 children single handed. I didn't believe I was stressed but on reflection probably was. I had several bouts of skeletal/muscular health problems at this point, that were largely ignored. My relationship with my mother has always been tense adding to my woes. I carried on and ploughed through.I suspect these 30 years contributed to my situation now. I was aware of the potential damage I could be doing , although I new I was exhausted a lot of the time.

in reply to Mmrr

Yes i understand. Ive pushed myself before to my detriment. I also had problems with getting treatment for chronic infection and long standing deficiencies. They went untreated for decades. I am very restricted now. Trying to undo all the damage. I know if i wasnt so ill id probably be a bit better at stress management but i know my sensitive nature would still be a problem at times. I do my best in a difficult situation but its hard when the smallest things feel like a challange. I have a few health issues.

in reply to

Whether you see yourself as sensitive or tough, there are benefits and shortfalls to each. You are clearly doing all you can to be as well as possible in a difficult situation. You might be tempted to undermine your ability to cope, but it must be very hard to have decades waiting for diagnosis and treatment. Who doesn't feel vulnerable when life is really challenging.

in reply to

Thank you. Yes i agree theres some benefits. Being sensitive does make me kinder and more thoughtful of others feelings etc. However, it can also make me worry more about other people etc.

I am trying hard to improve. I have been very strict with diet and lifestyle et. Even started some alternative medicine. My immune system has become a serious problem. Its keeping me in bed all the time with chronic infection. Its a hard lifestyle to maintain but ive been doing it for a very long time. Now i am trying some new things to see if i can break out of the situation. Heres hoping lol. X

Simba1992 profile image
Simba1992 in reply to Mmrr

I think you have a very good understanding of the big emotional stressors in your life. Are you aware of having metabolic dysfunctions before RA. Thyroid, sex hormones?

Simba1992 profile image
Simba1992 in reply to Mmrr

I do think we can work on how to handle stress through psychotherapy, through different body calming excersizes like meditation and yoga and also diet in fact. I think you need to first of all understand how stress affects you and then find ways to minimize the ill effects on your body.

Mmrr profile image
Mmrr in reply to Simba1992

Yes, I'm working on these issues at the moment. It is difficult when as a mother and breadwinner I'm normally bottom of the pile. But change is coming to me and I can say no much easier now. My children and partner are great.

in reply to Mmrr

I won't bore you with an over lengthy response after your restful holiday, but I have a distinct dislike of the concept of personality because 'type' hangs around with it. I don't think categorising helps in trying to understand an individual as a whole. I reckon,'Every person is in some respects, like all others, like some others, like no other' (Paraphrase of Kluckholm and Murray 1948). Add to that everyone changes as affected by life. I certainly want to understand others and be understood as me, not a type. Thats as short as I can manage!!

NB I was meaning to jump on the person who mentioned it.

Mmrr profile image
Mmrr in reply to

Trait and type theories of personality are interesting only from a historical perspective and provide good analytical/ evaluative fodder for entry level psychology students, trying to skill up in their trade. No modern day psychologist would subscribe to such theories. Your reference of 1948 is 70 years old, theories have been developed and dismissed manyfold since then. Of course all theoretical perspectives are limited in trying to nail down complex issues such as personality ( same with AID) but give a working framework to enable insight. Modern views of personality take a view of personality being on a continuum of characteristics of which most of us share to some degree or other (McCrea's big 5 for example). Where we are on the continuum will alter depending on what's going on in life and can change readily. Useful for giving personal insight ie I see myself as x normally but in a given situation I am a z.

Apologies if my response is a bit long winded !

in reply to Mmrr

I went on a Myers Briggs training day years ago. I think its been successfully debunked now, but I have the same reaction to questionairres as to a jar of picked onions-shudder. I am happy for other people to like them. They are just not a way forward for me. I think you can also get picked eggs-too awful to contemplate.

in reply to

I am sorry that this upset you. That was not my intention. Ive actually heard a few doctors saying certain personality types do make us more prone to stress. It was medical drs not psychologists. In my case i do agree, as i am a worrier. I am not saying that some other people cant improve on how they cope with stress. As i said above i think how ill you are plays a strong role too. X

in reply to

You haven't upset me in any way, and nobody else has either! I was brought up with a very critical, 'You are..., You are too..., you should be more...' Because of this I really can't bear any sort of categorising. It was my decision to respond to the personality bit (I do like a friendly debate), but up to me to recognise that this is far too personal for me and I should let it float on by.... x

in reply to

I understand. Glad your ok. Thanks for responding x

Shalf profile image
Shalf in reply to

I believe this to be true! You have hit on something here!

in reply to Shalf

Thanks Shalf x

Shalf profile image
Shalf in reply to

I know someone who smokes roll ups like a chimney! Drinks beer like a fish! Eats cakes and sweets every single day! Ok his teeth ( well his dentures) are horrid but he's one calm happy healthy cool dude!!

wishbone profile image
wishbone in reply to Shalf

He'll probably last well into his nineties no problem. :-)

Shalf profile image
Shalf in reply to wishbone

He said he's going to be here till he's 110! Very self assured chap! Probably will too! Haha - He's 58 just now with a mount of hair on his head many would die for! Some folks have all the luck! Shouldn't have been addicted to sugar though! It's ridiculous the amount of sugar he consumes and he's not diabetic.! 4 spoons in tea!!

wishbone profile image
wishbone in reply to Shalf

Lucky sod! :-)

Mmrr profile image
Mmrr in reply to

Personality, however you define it may play a part, but a genetic predisposition in relation to how our immune system works is also very important.

Simba1992 profile image
Simba1992 in reply to helixhelix

I actually do believe that these " super healthy people" are not so healthy after all. I thought I was one of them until I was forced to look closely what in fact had gone on in my body for a long time that I had not been aware of:(

in reply to Simba1992

I know what your saying. sometimes people appear healthy but there can be underlying issues. It can sometimes take a long time before symptoms appear.

Aw sorry. Big hugs to you. Ive been ill for so long, i have forgotten what its like to even be healthy lol

in reply to Simba1992

Sorry i just realised that msg was for helix! Doh. I better go anyway. Sore paws. 😣

Mmrr profile image
Mmrr in reply to Simba1992

Absolutely.

Simba1992 profile image
Simba1992 in reply to

I definately believe that the rise in AI diseases has to do with the fact that so many of us suffer from deficiencies and metabolic dysfunctions caused by all the things in our enviroment. Not forgetting the psychological stressors, and these subclinical disturbences have not been taken seriously until just recently. Hopefully in the future we will be able to stop the processes leading eventually to disease breakout.

in reply to Simba1992

I agree with you. I am trying to treat a long standing infection. Ill keep you posted on how much it helps me. I do think the sooner nutritional deficiencies and infections etc are dealt with the better. I am very late doing this but will give it a whirl lol. Have a good weekend x

Mmrr profile image
Mmrr in reply to Simba1992

I'm interested in our comparative lack of exposure to microbes (dirt) in the modern world to those of previous generations.

Do you know if there are studies on the prevelance of AID in farming communities compared to non farming communities in industrialised countries ?

Simba1992 profile image
Simba1992 in reply to Mmrr

Farming background does in fact increase RA incidence, but this has to do with pesticides.

ncbi.nlm.nih.gov/pmc/articl...

Mmrr profile image
Mmrr in reply to Simba1992

Opposite to what I imagined, interesting !

Simba1992 profile image
Simba1992 in reply to Mmrr

There are good things and there are bad things... that's how it goes. Unfortunately the bad things are, it seems,tipping the scale in the wrong direction as far as chronic illnesses go:(

Mmrr profile image
Mmrr in reply to Simba1992

The expectations society has on people, particularly women play a role too , I suspect. If you are not superwoman, managing a career, family and exciting lifestyle, then your not 'achieving' , certainly part of the expectations surrounding me.

Simba1992 profile image
Simba1992 in reply to Mmrr

Yes Mmr, I think you are so right. Did you know also that the incidence of depression in women is increasing rappidly. The men used to be more depressed now it's the other way around. And once again depression causes oxidative stress that is what pushes AI diseases!

Mmrr profile image
Mmrr in reply to Simba1992

Yes I am aware, and the media issues of how everyone, but again particularly women look, are immense.

Plastic surgery options to 'correct whatever' - oh and to be a sex goddess too !

I taught adolescents for 22 years and was alarmed at the change in expectations of young women over the time period. Yes, more saw themselves as equals to men, on the job market for instance (not true), then paid a fortune on beauty, clothes, fads of this and that to look cerain ways and stressed if they didn't have a boyfriend, did have a boyfriend but he was not kind to them, had a boyfriend who was kind to them 'whats wrong with him ?'.

And the increase in caesarian section births and the yet unknown but emerging concerns around failure of the baby to be exposed to the microbiome of the vagina and the impact on the babies Immune system.

I could go on. The complexity of AID is quite outstanding.

Simba1992 profile image
Simba1992 in reply to Mmrr

This was an interesting study.

sciencedaily.com/releases/2...

wishbone profile image
wishbone in reply to

Funny you should mention toxins etc possibly leading to autoimmune diseases. Can't remember exactly how long, a year or two before I was diagnosed with RA perhaps, I was advised to have my cholesterol tested because my brother's was very high and he was experiencing heart issues. No problem with my cholesterol, but I was called in to see my GP because something untoward had showed up in my blood. When I spoke to my GP he told me it was nothing to worry about and to drink plenty of water. Then again I suppose it is possible that it may have been an indication of something beginning to go wrong, even though the GP brushed it off. I now wish I had asked him exactly what it was they found in my blood.

PFKAAde profile image
PFKAAde in reply to wishbone

It will be on your medical notes...

🙏🏻

wishbone profile image
wishbone in reply to PFKAAde

Going back fifteen to twenty years ago? If so I will ask at the next opportunity.

PFKAAde profile image
PFKAAde in reply to wishbone

I had a glimpse of my records at my current GP’s last week as we were discussing something and was quite surprised at how far back and how detailed they seemed to be.

We were viewing medical records from >15 years ago at the time and the record was a complete record - so blood test results should absolutely be there somewhere. If they fob you off mention that it is a legal requirement!

pcse.england.nhs.uk/organis...

🙏🏻

wishbone profile image
wishbone in reply to PFKAAde

Ok, will do. I think I might have better luck seeing them at rheumy rather than my GP who I suspect won't be too keen, but will play the legal requirement card if I have to.

Thanks for that PFKAAde

Mmrr profile image
Mmrr in reply to wishbone

I'm just in the middle of a FOI request for all my medical records held by my GP, they have been very helpful. Your GP will have all electronic records and any paper records for you whilst you have been registered with them. Some paper records will have been transferred from previous GPs you have been with, but they most likely will be incomplete.

wishbone profile image
wishbone in reply to Mmrr

Thanks for that Mmrr, I've been with the same surgery for longer than I care to remember. There has been a change of practice, which may have taken place around the time I had the blood test I'm interested in, but that shouldn't affect the availability of my records should it?

What is a FOI request?

Mmrr profile image
Mmrr in reply to wishbone

Freedom of Information...by law you must be given access to all information held on you by any institution.

wishbone profile image
wishbone in reply to Mmrr

Hi Mmrr,

Just to let you know that I've requested my medical records over the phone with my surgery receptionist. She was very helpful and checked my electronic records as far back as 2002 when I was diagnosed with RA. Prior to that I was a picture of health so the very few visits I made to the surgery will be on paper and these records are kept somewhere else. The receptionist will notify me when they're available for me to see, which should be in a few weeks time. She added that I will have to go to the surgery to view them in the company of someone working there. Accessing my medical history has been easier than I anticipated. :-)

wishbone

Annie122 profile image
Annie122 in reply to wishbone

the doctors tell you nothing its not good wishbone

wishbone profile image
wishbone in reply to Annie122

That's pretty much what I'm expecting, at least from my GP. Hopefully my new rheumy will be female then I can use my natural manly charm to woo her into letting me see my medical records. Clever eh!

Annie122 profile image
Annie122 in reply to wishbone

lol good idea haha

wishbone profile image
wishbone in reply to Annie122

What do you mean lol!...I'm blinkin' serious!.......;-)

Annie122 profile image
Annie122 in reply to wishbone

haha were r u from wishbone? how long have you suffered with ra?

wishbone profile image
wishbone in reply to Annie122

South Wales. I've had RA for over 15 years. I'm happily married by the way so you can forget it. :-)

Annie122 profile image
Annie122 in reply to wishbone

lol i wasnt thinking of a date lol glad to hear your happily married!

wishbone profile image
wishbone in reply to Annie122

;-)

Annie122 profile image
Annie122 in reply to wishbone

just interested to no were everyone else is from on here!

wishbone profile image
wishbone in reply to Annie122

I'm just fooling around. Where are you from Annie?

Annie122 profile image
Annie122 in reply to wishbone

ireland

wishbone profile image
wishbone in reply to Annie122

A fellow celt!...good stuff indeed!

Annie122 profile image
Annie122 in reply to wishbone

?

wishbone profile image
wishbone in reply to Annie122

Ireland and Wales are both celtic nations.

Annie122 profile image
Annie122 in reply to wishbone

ah ok lol get you now haha

PFKAAde profile image
PFKAAde in reply to wishbone

🤣

Coincidentally I have looked at my medical records (on screen) while at both my GP and at the hospital (seeing the nurse specialist) as I was asking questions about things that happened years ago (have had RA for nearly 20 years).

In both cases the records were from before I got RA in 1999 and I didn’t even have to use my undoubted charms to view them. 😉

🙏🏻

wishbone profile image
wishbone in reply to PFKAAde

When I was at out of hours a couple of weeks back with a suspected broken toe, the specialist nurse let me look at my records while she was searching for the last x-ray of my feet, which was in 2012. She may well have let me go further back if I'd was interested in doing so at the time.

PFKAAde profile image
PFKAAde in reply to wishbone

Possibly, depending on how relevant it was and how busy she was!

But regardless it is all your personal data and they legally have to let you see it, just not necessarily in an appointment with a nurse.

The link above was for GP notes, I think hospital may be different, and whilst there will be overlap, the GP won’t inform the hospital of your visits, so unless the good old NHS is a lot further ahead with the whole ‘centralised medical records’ thing than they were when I last looked into it, you’d probably need to get both sets to get the full picture.

But that’s off the top of my head without checking.

wishbone profile image
wishbone in reply to PFKAAde

Seems like the best course of action is to ask my GP first and take it from there.

Although the abnormality they found in my blood may have nothing to do with my autoimmune condition, and may be of little consequence, it does seem a bit strange why my GP decided not to tell me what it was.

Thanks again

wishbone profile image
wishbone in reply to PFKAAde

Hi PF,

Just to let you know that I've requested my records over the phone with the receptionist at my surgery. She was very helpful and checked through my electronic records, which in my case only go as far back as 2002 when I was diagnosed with RA. Prior to that I was a picture of health so what few records exist are on paper and they are kept somewhere else. The receptionist has placed a request and the paper records should be available in a few weeks time. She added that I must be accompanied by someone working at the surgery when I look at them, which is fair enough. Accessing my records has been easier than I anticipated. :-)

I've replied much the same to Mmmr above.

wishbone.

PFKAAde profile image
PFKAAde in reply to wishbone

Good stuff, glad you got it sorted 👍

Yeah, I think my records were a bit patchy until a certain event in 1999 and since then there have been literally books upon books worth of notes!

🙏🏻

wishbone profile image
wishbone in reply to PFKAAde

I've had a look at my medical notes and posted my findings to Thinkoutsidethebox. If you're still interested it's twelve posts down. :-)

in reply to wishbone

Hey wishbone. Thanks for your reply. Oh thats interesting. I didnt think conventional drs tested for toxins. Do they? X

wishbone profile image
wishbone in reply to

I don't know, but now you mention it I would think a blood test specifically checking for suspected toxins would be needed. So if it's unlikely to be a type of toxin, what else besides the obvious cholesterol markers can be detected with such a test? If the GP told me to drink plenty of water then it could have been to try to flush out some sort of impurity perhaps?

in reply to wishbone

Yes i am really not sure. Ive only heard g.ps talk about drinking more for urine infections. However, it couldnt have been that as he would have said. Probably would have given you an anti biotic too. Its a shame he didnt explain x

wishbone profile image
wishbone in reply to

I've been told to drink lots of water for a urine infection more times than I care to remember. I'm fed up of guzzling the stuff with this stupid bladder condition I have. As the docs could offer no explanation of what caused it, I sometimes wonder if my RA was the culprit as it does seem to effect some bodily organs and the like.

It is a bit of a mystery why he didn't tell me, which makes me determined to try and find out even though it may well be something insignificant.

in reply to wishbone

Thats a shame. Yes i understand. I would be the exact same. I would want to know.

Simba1992 profile image
Simba1992 in reply to wishbone

I often wonder why patients do not ask their doctors to explain things more. Do they not want to know or do they think they are not supposed to know? Or are they just so perplexed by the situation?

helixhelix profile image
helixhelix in reply to Simba1992

Lack of time, with short appointments and doctors being very good at using body language to get you out the door. It takes effort to sit tight until all your questions are answered.

Simba1992 profile image
Simba1992 in reply to helixhelix

Perhaps what we need today is coaching for patients how to get through a consultation with a specialist, with your self-esteem intact and a feeling that the help you had hoped for has been met. 🤔A new business idea perhaps😉

wishbone profile image
wishbone in reply to Simba1992

Perplexed in my case. As pathetic as it may seem, being in good health at the time I found it daunting being called in to see my GP because something untoward had turned up in a blood test. By the time I saw my GP I was so worried that something serious had been found that when I was told it was nothing to worry about I had a rush of instant relief and was out of that surgery like a bat out of hell with no mind to ask what it was they had found in my blood....I was ok and that's all that mattered at the time.

To be honest, if I was still in good health then I don't think I'd behave much differently if the same happened today. Daft I know, but there you go...

Simba1992 profile image
Simba1992 in reply to wishbone

That's how I have felt when the good doctor tells you good news:) But then again when you have a chronic illness that doesn't go away and your doctor cannot make it disappear, the situation becomes much more cmplicated.

wishbone profile image
wishbone in reply to Simba1992

As I've since found out!

wishbone profile image
wishbone in reply to

Just to let you know that I have the aforementioned blood results in front of me, and you wasn't too far off the mark with your drinking more for urine infections comment......

Although it was only my cholesterol that was supposed to have been checked, I was actually given a FBC blood test back in 1999, 3 years before my RA was diagnosed. Every result in the test was good except for one thing in my renal profile and that was my Urea was a bit high - norm = (3.0 - 7.0) mine was 8.1. Very unlikely to be RA related, more like a possible indicator of future cardiac or kidney problems, at least that's my understanding of it, but don't quote me. :-) Out of interest I had a look at my old methotrexate record booklets from back in the early noughties to find that I had raised Creatine (think that's similar to Urea?) markers through the vast majority of monthly FBCs taken back then. I did have a mild heart attack approx 5 years after the blood test, but whether this can be linked with my seemingly long term Creatine markers is anyones guess. That said, if the medical profession suspect that high Creatine/Urea levels can be an indication of possible future cardiac/renal issues then I'm a little mystified why I was never told about it so I could then have taken steps to lower the risk(?), and this continued after I had a heart attack.

Whaddya think?

PFKAAde profile image
PFKAAde in reply to wishbone

Wouldn’t want to guess what they were thinking, but maybe it was only slightly high and dehydration is one likely cause? If it was a possible indicator of future problems though you’d hope they’d provide some ‘education’ as well...

Maybe the standard response to that result (combined with your history etc) is “advise patient of importance of good hydration and monitor situation” or similar, and they didn’t do a very thorough job!

Why not explain to the receptionist and ask if they’d prefer it if you made an appointment to see a doctor to go through it or whether they’d prefer a letter that they could answer in their own time? Think that’s what I’d do, and not in a confrontational way (yet!), just legitimate concerns about your medical records.

🙏🏻

wishbone profile image
wishbone in reply to PFKAAde

As you say, it could be that levels were only slightly high and that is why my GP at the time told me it wasn't anything to worry about and just to increase my fluid intake. I wouldn't be surprised if not drinking enough played a part along with too much protein as I used to eat a fair amount of meat and dairy produce up until a few years ago. Things have changed since then as I've been drinking loads of water since contracting a bladder condition around 5 years ago. Next time I have a blood test, which shouldn't be too long, I'll ask the nurse if I can have a look at my Urea markers for some past FBCs. I'll also ask my GP what levels are considered to be problematic. Thankfully, I haven't had any heart issues since the heart attack, which was only mild and an angiogram at the time showed no my heart to be in good order regarding arteries, valves etc.

Thanks for replying PFKAAde, take care.

PFKAAde profile image
PFKAAde in reply to wishbone

No worries.

Funnily enough you’ve reminded me of once many, many years ago when I was still having repeated diagnostic blood tests that the consultant I was seeing (can’t even remember which doctor it was) looked at my test results and said I was a ‘bit dehydrated’ and that I should drink more.

Not sure what exactly he was looking at, but I followed his advice and went to the pub.

👍

wishbone profile image
wishbone in reply to PFKAAde

Haha :-)

in reply to wishbone

So sorry for the delay wishbone. I am not on here often due to hand pain. If you mean your creatine kinase was high then yes i think this does indicate heart issues. If you had a heart attack after this then i suspect this was a relevant result. I agree you should have been informed.

wishbone profile image
wishbone in reply to

No problem. I asked the rheumy nurse about the creatine level in the last blood test I had about 3 months ago. She said everything was good, plus I've not had another heart attack so I must be doing something right. :-)

Thanks and hope your hand eases soon.

in reply to wishbone

Thats great. I heard magnesium, potassium and coenzyme q10 were good for heart health. Not sure if you take any of these? If you do have any kidney issues then i dont think you can take magnesium . I would double check with a Dr.

lifeextension.com/magazine/...

lifeextension.com/Protocols...

wishbone profile image
wishbone in reply to

Thanks for the interesting and useful links. I have an enlarged kidney, which I don't think matters, but will check with my docs first.

Not sure what caused my heart attack. Angiogram showed nothing of obvious concern, which was a big relief at the time. According to the cardiologist my RA was not to blame as it was inactive at the time...wish it was like that now! Obviously having a heart attack of any kind is not a good thing, but mine was only mild.

Take care

in reply to wishbone

No problem at all wishbone. Yes i would double check with your doctor just to be on the safe side. I am glad it was mild. I know what you mean though. Take good care of yourself!

wishbone profile image
wishbone in reply to

You take care too.

in reply to wishbone

Thank you 😃

wishbone profile image
wishbone in reply to

Whatever it was in my blood test, suspect or not, when I find out I'll post about it here..watch this space as they say!................................................................................

in reply to wishbone

Good luck!! I bought my medical records too. Its interesting.

Stormpetrel profile image
Stormpetrel

Dear Simba 1992

Thank you for posting this link. Very interesting reading. I was very unwell with an unusual identifiable virus (not listed in this article) a few months before I developed a Rheumatoid Crisis. I have brought this up with Rheumatologists for discussion in the past with no response. Maybe in the future the causal links for determining the onset of disease may help to indicate which treatment would work for the individual.

Unfortunately I think this knowledge is many many decades ahead.

All the very best and thanks again

Simba1992 profile image
Simba1992 in reply to Stormpetrel

Thank you Stormpetrel, It really seems like there are infections that may trigger the onset of RA as well as vaccinations and many other triggers but the question is is the trigger only the last straw that breaks the camel back?

All the best to you, Simba

nablur profile image
nablur

I think there is another component, that of certain surgeries. Our bodies and specifically our digestive system is not meant to be surgically invaded. I think my ra started when I became septic and had emergency surgery to save my life. And they did, and I’m grateful, but getting into my intestines and removing a bunch can’t have been good for me internally. And then this happened.

Simba1992 profile image
Simba1992 in reply to nablur

Yes this is something where there seems to be a connextion. After big accidents or invasive surgeries like joint replacements there is a greater risk of autoimmune disease breakout. This is quite understandable since it is quite a stresson the organism. And once again stress matters. There was an orthoped who told me that you get RA two within two years of a big accident.

Gigi71 profile image
Gigi71 in reply to Simba1992

My RD started 5 weeks after a hysterectomy 33 years ago was very ill after. I also had Hasimoto's DX about 8 year before. A Homeopath said remove a layer and another problem appears. X

Simba1992 profile image
Simba1992 in reply to Gigi71

Hopefully in the future there will be more motivation to treat the whole person after an invasive procedure and be more vigilant on the effects on the individiual. Correct hrt after a hysterectomy is not a given at all. It is only recently that more research on the subject is done. The hormonal imbalance and its effect on metabolism and normal immunfunction is huge.

Gigi71 profile image
Gigi71 in reply to Simba1992

I wasn't given HRT as I still had my ovaries, I was 40 at the time and they said I would still go through the change. X

Simba1992 profile image
Simba1992 in reply to Gigi71

Central in the follow up of your hysterectomy would have been to follow up your estrogene/progesterone balance as well as thyroid function to see the metabolic and hormonal effects of the procedure. Estrogene/progesterone balance in perticular.

Gigi71 profile image
Gigi71 in reply to Simba1992

With hindsight I should have made sure they did. I went into hospital for a month when I eventually saw the rheumatologist three months after. Blood was taken regularly for all sorts, as they thought I had Lupus. I have always blamed my RD on antibiotics I was given as a child for ear infections. I had measles aged 5 and it affected my right ear. I took them every 3 months or so till I had a mastoid op when I was 16, plus I used to get UTI 's as a young adult till the hysterectomy, just the odd one after that. But reading this thread could have been I always seem to have infections for years. I have always been careful with my diet, never smoked. Sounds boring, but on the whole had a great life, but lots of stress too as a single mother to two teenage boys when my marriage ended a year after my illness. Has made me a strong person though. X

wishbone profile image
wishbone in reply to nablur

I've had sepsis twice, post-RA, but thankfully didn't need any bodily parts removed!...that must have been really awful and scary! Sepsis really hits you for six, it took around 6 months for me to recover from the first, and the worst, time had it.

Take care

juneann profile image
juneann

I don't tend to read too many articles if any, maybe I did in the early days. I just get on and eat what I like within reason, I don't eat fast food or ready made food but always cook fresh and eat four different fresh fruits every day. I don't do any fancy exercise except cycle and walk everyday in the open air. I have been more than aware of my hormones since aged fifteen and I'm now fifty six and still menstruating. I have no reason to be deficient in nutrients so I can only think that comes after the start of RA rather than being a cause. I don't go looking for whys and where does but just get on with it albeit difficult and painful every single day. Life's too short to turn it into a daily focus, although there are days when it overshadows everything with pain and frustration. Keep taking the tablets as the doctors say or in my case infusions.

Simba1992 profile image
Simba1992

I'm sorry to hear that you have such a struggle. I have found that understanding better what my pain is about and what helps gives me more strength and a feeling of beeing a bit more in control. Take care. Simba

Maria2008 profile image
Maria2008

very interesting.

Also see

medicalnewstoday.com/releas...

thyroidpharmacist.com/artic...

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