Could I be B12 deficient? : Hi all, I... - Pernicious Anaemi...

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Could I be B12 deficient?

Sheepcoat
Sheepcoat

Hi all, I wondered if anyone could offer any advice on whether I could be B12 deficient with a normal serum B12 level? I have been trying to get to the bottom of my symptoms for about 10 years. My main symptoms are: general daily lerhargy/muscle weakness, chronic fatigue after exercise which includes brain fog, dizziness and palpitations (it's so bad that I just don't exercise any more), and problems with breathing and constantly having to take deep breaths. I also have problems with my bladder which is 'neurogenic' and doesn't empty properly, and I get nerve pains in my arms and legs, mainly at rest. And light periods/lack of libido.

My B12 was done recently which was 571.9 pg/ml (197- 771). I've been taking daily supplements for 6 years though as it was much lower than this at first. My ferritin was also at the lower end of the scale at the time. I've been recently diagnosed with Hashimoto's thyroiditis, but my thyroid levels are in the normal range and it recently went from being overactive and now back to normal again. I also did have a trial of thyroxine a few years back from a kind doctor, but it just seemed to make me feel as though I was going overactive, so I thought my symptoms can't be caused by the Hashimoto's...

Could anyone shed any light of what to do? I'm still under an endocrinologist aswell, so I could ask her for any more blood tests or to get referred to a different specialist maybe.

I will be grateful of any advice and what a wonderful forum!

45 Replies
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Hi,

Hope you find the answers you need.

"any advice on whether I could be B12 deficient with a normal serum B12 level"

I had many typical symptoms of B12 deficiency for years including multiple neurological problems but could not get any treatment from NHS apart from one set of loading injections due to all my B12 test results being in range eg 300 - 500 ng/L. , apart from one which was under 150 ng/L.

In the end I was forced to treat myself after fighting for treatment for years and each request being refused.

It is possible to have Functional B12 Deficiency where there is plenty of b12 in the blood but it's not getting to where it's needed in the cells.

Links about Functional B12 Deficiency

pn.bmj.com/content/9/1/37

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

academic.oup.com/qjmed/arti...

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

Peripheral Neuropathy

nhs.uk/conditions/periphera...

Most GPs will be hopefully be aware that B12 deficiency can lead to damage to peripheral nerves so worth mentioning any symptoms to GP suggestive of peripheral neuropathy.

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

Have you considered joining PAS and ringing their helpline?

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

Hashimotos is an auto immune condition and so is PA (Pernicious Anaemia). Having one auto immune condition increases the chance of another one developing.

Have you ever been tested for Coeliac disease, another auto immune condition that can lead to B12 deficiency?

NICE guidelines Coeliac Disease

nice.org.uk/guidance/ng20/c....

If you haven't already I suggest putting any thyroid results on Thyroid UK forum on HU.

Link about "What to do next" if B12 deficiency suspected or newly diagnosed.

b12deficiency.info/what-to-...

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

BNF Hydroxycobalamin

bnf.nice.org.uk/drug/hydrox...

Useful B12 book

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). BNF treatment info is out of date in this book. See BNF link above.

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 1 in above link is about being under treated for B12 deficiency with neuro symptoms.

Point 5 is about being symptomatic for B12 deficiency with an in range serum b12 result.

B12 article from Mayo Clinic in US.

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

Table 1 in above article is about frequent misconceptions about B12 deficiency.

Article suggests ....

1) No proof that oral b12 is a good at treating B12 deficiency as B12 injections

2) Many current tests eg serum b12, active B12, MMA, Homocysteine, are not totally effective as diagnostic tests for B12 deficiency.

3) Successful treatment should not be stopped

Lots of B12 info in my replies on the the thread below eg symptoms of B12 deficiency, causes of B12 deficiency, B12 books, B12 websites, B12 articles/documents and a few hints about dealing with unhelpful GPs which I hope you'll find useful.

healthunlocked.com/pasoc/po...

I left a detailed reply about impact of pandemic on B12 treatment in UK in next link which might be of interest if you're UK based.

healthunlocked.com/pasoc/po.....

I am not medically trained.

Worth looking at the pinned posts on this forum.

Hi Sleepybunny, thanks so much for all the information, that is awesome! I have been tested for coeliac which was negative. I've got gastritis for which I had an endoscopy and that also tested negative for coeliac. I did post my thyroid results on the Thyroid UK forum a few years back, which was fairly helpful in that I was told I'd got Hashimoto's before I was even diagnosed with it, but they said my results were normal and I probably wouldn't get treatment yet. I did try thyroxine in any case, but it didn't help anyway... So I've been trying to work out ever since what is actually causing my symptoms.

You've given me lots of reading material to look at, so thanks for that, much appreciated.

Hi,

"I have been tested for coeliac which was negative."

Best piece of advice I ever got was to always get copies of or access to all my blood results.

When I did this I found abnormal and borderline results despite being told everything was normal/no action.

I suggest you find out which tests you had for Coeliac disease.

Did you have both these tests?

TTG IgA test which checks for antibodies to gluten

Total IgA test which checks which patients have IgA deficiency

Patients with IgA deficiency who have suspected coeliac disease will need a different blood test as they will get a negative result in TTG IgA test. See NICE guidelines link in my other reply for more info.

Were you told by your GP/specialist to make sure you were eating plenty of gluten in more than one meal per day for several weeks before the blood was taken.

People with coeliac disease may get a negative result in TTG IgA test if they weren't eating enough gluten prior to test.

I have read that some people with coeliac disease have skin symptoms and may not present with gut symptoms.

coeliac.org.uk/information-...

Endoscopy

What sort of endoscopy did you have?

nhs.uk/conditions/endoscopy/

Do you know where the gastritis was in your gut?

Where it is may give a clue as to the cause. You should be able to access the report from gastroenterologist to GP in your medical records if you want to know more.

I think only a capsule endoscopy looks at the whole digestive tract.

I don't think other types of endoscopy would examine the terminal ileum, part of the gut where B12 is absorbed. Damage to terminal ileum could lead to B12 deficiency.

Have you been tested for H Pylori infection which can be associated with gastritis and B12 deficiency?

H Pylori infection

patient.info/digestive-heal...

NICE guidelines H pylori

pathways.nice.org.uk/pathwa...

Click on blue boxes in flowchart for more info.

Any possibility of internal parasites eg fish tapeworm?

One potential sign of fish tapeworm infection is an increase in eosinophils, a type of white blood cell. Eosinophil result can be found on Full Blood Count test results.

There are other parasites that are associated with B12 deficiency.

Have you got recent results for folate and ferritin or other iron tests plus results for full blood count (FBC)?

Blood tests

b12deficiency.info/b12-test...

Macrocytosis

patient.info/doctor/macrocy...

Full Blood Count and Blood Film

labtestsonline.org.uk/tests...

patient.info/doctor/periphe...

Folate Deficiency

patient.info/doctor/folate-...

Iron Studies

labtestsonline.org.uk/tests...

Thyroid tests

thyroiduk.org/getting-a-dia...

PA tests

Intrinsic Factor Antibody (IFA) test

labtestsonline.org/tests/in...

Parietal Cell Antibody (PCA) test

labtestsonline.org/tests/pa...

PCA is not recommended as a diagnostic test for PA in UK.

It is still possible to have PA with a negative result in IFA or PCA test.

About 50% of people with PA test negative on IFA test.

About 10% of people with PA test negative on PCA test.

Hi Sleepybunny, I had a gastroscopy last year and 4 biopsies were taken, but no coeliac was seen and urease test was negative. I was just diagnosed with gastritis and he found patchy erythematous mucosa in the antrum. I was also tested for H-pylori which was negative.

I did have a capsule endoscopy earlier this year and that was also normal, definitely no tapeworms or inflammation in the ileum, so the problem is all in the stomach.

Foggyme
FoggymeAdministrator

Just a thought Sheepcoat...those with one autoimmune conditions are more prone to developing others.

Might be a good idea to ask your GP to run an autoimmune panel just to check (the symptoms of many autoimmune diseases are very similar to those of B12 deficiency (and to Hashimoto’s).

Good luck.

Sheepcoat
Sheepcoat in reply to Foggyme

Hi Foggyme, I did actually see a rheumatologist who did lots of autoimmune tests. She thought I might have lupus at first, but I didn't have the inflammatory marker, so she then decided I didn't have it. I have got various antibodies though, such as the thyroid ones, anti ds-DNA and ANA, but no one seems to be able to piece them together.

Hi,

Link about Anti-dsDNA test

labtestsonline.org.uk/tests...

Link about ANA test

labtestsonline.org.uk/tests...

I have read that it is possible to have seronegative lupus.

Lupus tests

lupusuk.org.uk/medical/lupu...

Have you ever had an intrinsic factor antibody test (IFAB or IFA)) which is a test for PA (Pernicious Anaemia)?

Have your doctors considered the possibility of Hughes Syndrome ( also known as Antiphospholipid Syndrome APS)?

aps-support.org.uk/about-ap...

ghicworld.org/hughes-syndrome/

Very interesting about the seronegative lupus, although my results were both positive! But I didn't have the inflammatory marker to go with it, which gives the ultimate diagnosis. I also know people with lupus and their main symptoms are joint and muscular pain which I don't particularly have.

I've never had the IFA test. Can a GP do this test?

I've just read up about Antiphospholipid Syndrome, but I don't seem to have the symptoms for that.

Hi again,

GP can order the IFAB test for PA.

It's also possible to get IFAB test done privately. Search online for "private blood tests uk".

PA tests

Intrinsic Factor Antibody (IFA) test

labtestsonline.org/tests/in...

Parietal Cell Antibody (PCA) test

labtestsonline.org/tests/pa...

PCA is not recommended as a diagnostic test for PA in UK.

It is still possible to have PA with a negative result in IFA or PCA test.

About 50% of people with PA test negative on IFA test.

About 10% of people with PA test negative on PCA test.

This UK document mentions Antibody Negative Pernicious Anaemia.

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

Sadly there are GPs who are unaware that it is possible to have Antibody Negative PA.

Antibody Negative Pernicious Anaemia is mentioned in Martyn Hooper's book "What You Need to Know About Pernicious Anaemia and B12 Deficiency"

Inflammatory markers in SLE.

sciencedirect.com/science/a...

"But I didn't have the inflammatory marker to go with it"

Which inflammatory marker were they looking for?

Link about Complement tests

labtestsonline.org.uk/tests...

UK lupus guidelines

lupusuk.org.uk/bsr-guidelines/

Lupus article aimed at medics

patient.info/doctor/systemi...

OK, that's great, thanks for the info. I think I'll see if my endocrinologist is willing to do it first then as she did test my B12. If not, I'll try my GP. B12 deficiency doesn't sound easy to diagnose if such a large amount of people can test negative for the antibodies! So basically, GPs should just give people a trial if they are showing symptoms then really, but can't imagine a lot of GPs doing that.

When I was almost diagnosed with lupus, she was looking for crithidia I think, as she seemed to point out that I was dsDNA positive /crithidia negative, and also negative in CRP, complements etc. I am going to try and get a second opinion from another rheumatologist, as the one I saw still wasn't completely sure whether I did or didn't have lupus and just said she wasn't convinced I had it, and left it at that! So that's not saying one thing or the other really 😕

Foggyme
FoggymeAdministrator in reply to Sheepcoat

This sounds rather odd Sheepcoat!

First thing is - ds-DNA is highly specific for lupus so it's rather curious that lupus has been ruled out. Also worth noting that 40-60% of those diagnosed with lupus don't have ds-DNA antibodies. So it’s highly unusual to rule out lupus when ds-DNA auto-antibodies are positive.

It’s worth saying that many general rheumatologists are not very knowledgable about Lupus and it can be very tricky to diagnose (though not usually when ds-DNA is positive). (I know this from experience - it took me thirty years plus and several rheumatologist before I finally got the correct diagnosis - Lupus). Curiously, some rheumatologist mistakenly think that you can only have lupus if the kidneys are involved (that’s nonsense).

Have you seen the BSR diagnostic guidelines for Lupus (I'll attach in a link for you).

Basically, there are different classifIcation criteria to guide Lupus diagnosis.

1) The ACR classification - requires 4 or more clinical criteria (ANA and ds-DNA count as two plus two more relating to clinical symptoms (table 4 in the attached link)

2) SLICC classification - one immunological (you have two), one clinical, and two from the expanded table (all at Table 5 in the attached link)

3) diagnosis can also be made on ds-DNA and low C3 or C4 levels.

It’s worth noting that these classification criteria are used for entry into research studies but are also a useful guide to diagnosis. Crucially, neither of the above classifications cover all the clinical manifestations of lupus, so the presence of either ANA or ds-DNA and together other clinical manifestations can be used for diagnostic purposes.

Here's a link to the guidelines:

academic.oup.com/rheumatolo...

I think you need a second rheumatology option - preferably try and find a general rheumatologist who has a special interest in lupus... or ask to be referred to a Lupus Centre of Excellence (look on the LupusUK website - centres of excellence listed there). Also worth posting on the LupusUK forum here on HU.Some very knowledgable and lovely folks who can answer any questions you have and be there for moral support. Here's a link to the forum: healthunlocked.com/lupusuk

Also suggest you put in a subject access request to the hospital where you saw the rheumatologist and ask for copies of all your clinical notes, investigation results and blood test resultS (including reference ranges). This will help when it comes to a new appointment and provide blood test results to evidence your positive ds-DNA and ANA.

You could ask for a review with your current rheumatologist if they’ve 'kept you on' for further review. Personally I'd be wary of any rheumatologist who discounted Lupus as a diagnosis following a positive ds-DNA result.

I was diagnosed with Lupus with neurological manifestations (NPSLE) with extremely high ANA (1:1600 continuously for several years), low C3 and multiple clinical manifestations.

It’s often really difficult getting a diagnosis for complex autoimmune diseases. I was, over the years...misdiagnosed, belittled, and, on occasion, treated with hostility. It went through several rheumatologist before I was eventually diagnosed at a Lupus clinic of excellence (by a professor, now sadly retired).

So please don't give up...keep pressing for answers...you know your body and you know when something is wrong and, for goodness sake, you have a positive ds-DNA result!

I know how very tough this is so wish you the very best of luck and would love to hear how you get one.

Sheepcoat
Sheepcoat in reply to Foggyme

Hi Foggyme, I remember reading at the time about the anti ds-DNA/ANA and it being highly specific for lupus and thought it was queer that she then decided to rule it out due to not having the C3 (you just jogged my memory and that's the result which was negative). She must've used the diagnostic criteria number 3 which you've listed then.

I think the rheumatologist I saw was a registrar so working under a 'fully trained' rheumatologist I imagine. I will ask for a second opinion now you've said that and I'll request all of my previous blood results. My anti ds-DNA came up high twice aswell! Along with the ANA. I thought that perhaps she ruled it out as I'm not crippled up with it and am still 'functioning' and never been hospitalised, but there must be people with kind of 'mild' versions of it. Saying that, sometimes I feel absolutely terrible, and sometimes I feel quite good, but it's variable. She did put me on a trial of hydroxychloroquine, but I didn't really feel any benefit from them at the time, and I think because I didn't feel much better, she decided to rule it out. She did say that she would see me again if I deteriorated in the future or anything, so I should still be under her care, but I will probably find someone who's got more of an interest in lupus, as you said.

Talking of the kidneys, I'm often having UTIs and 'traces of protein' in my urine which can't be good.

That's shocking you went through several rheumatologists before you were actually diagnosed! You said your ANA was very high, but I know mine wasn't super high, just mildly raised, I think she said.

When I had my first recent appointment with my endocrinologist, the first thing she started quizzing me on was lupus actually, so my symptoms must sound a lot like it...

I would love to feel great again and be able to exercise without feeling terrible the day after.

Foggyme
FoggymeAdministrator in reply to Sheepcoat

Hi Sheepcoat, Hmmm...again, odd that lupus was ruled out due to the absence of low C3. C3 does go up and down but is not a blood marker that’s essential to Lupus diagnosis. My low C3 was recognised as a diagnostic marker - simply because I had it.

Talk to anyone with lupus and we all get quite cross when lupus is defined as 'mild'. Mild, in whose terms. Lupus can be devastating and debilitating - even when those with it appear to function and are often told...but you don't look ill. Bet you don't feel very functional when you try to do anything and then take a day (or days) to recover. Or have to sleep every day just to get through to bedtime.

About the hydroxychloroquine - Lupus is a sneaky disease and manifests clinically in many different ways in each individual. And drugs that work for one may not work for another. Some who have no response to hydroxychloroquine do have an effective response to Mepacrine (another chloroquine drug that’s sometimes used). Surprised she didn't offer you a trail of that. And chloroquine drugs just don’t work for some people. Steroids do tend to work for most with lupus - though not good for long term use. Rheumatologists aim to use DMARD drugs rather than steroids - they’re what’s called 'steroid sparing' and are safer in the long term. (Just saying this to show that there are a wide range of treatments available - you don't have to suffer due to lack of treatment options - you just need a rheumatologist who who is willing to try different options to improve your health and quality of life).

It can often taken many tries with different drugs (or a different combination of drugs) to find a medication that works for you (I had a severe adverse reaction to hydroxychloroquine and have been told never to take it again). The fact that it didn't work for you can't be taken as an indicator that you don’t have lupus. It just means that that particular drug didn’t work - for you. Others may. Also,worth noting that many of the drugs used for autoimmune disease take a significant amount of time to take effect (six months or even up to a year for most).

Thinking about it - now is not a great time to be seeking new referrals to the NHS - it could take some time. Perhaps if you’re still 'on the books' with a Rheumatology department, then it may be a quicker way to get an appointment. Your rheumy may be more experienced or you may be seen by another member of the team. And you're probably more aware now and better able to present your case (or should I say, counter their (however well intentioned) dismissals 😉.

If necessary, you can run with that (if you can get in) whilst also asking your GP for a referral elsewhere for a second opinion...then transfer over once you’ve been along for that first appointment...(which you could of course cancel if going back to your original rheumy team is a success). Terrible how we have to manoeuvre around these things just to get decent treatment - it’s not your (our) fault(s) - it’s the system!

You’re right - frequent UTI's and protein in the urine needs checking out by Rheumatology to rule lupus nephritis in or out (though I,m not for a minute suggesting you have it)... just another reason for a referral or re-referral.

Hope you have a good GP who can helps you with all this - and maybe chase things for you if the wait turns out to be an extraordinarily long one.

Your endocrinologist sounds on the ball in picking up on the lupus thing...

Feeling great can still happen...once on an effective treatment plan that works...but that can take some time to get right (I'm not there yet...but working on it). Many with lupus live 'normal' lives... and never have to appear on fora like these - they don't need the support because they’re well enough to be off doing life and living 👏👏. Set your sights in that direction and keep pressing on to get the best treatment and care for yourself.

Very best of luck x

P.s. a mildly raised ANA is still a raised ANA...and that's 'trumped' by the ds-DNA (if there is such thing as a blood hierarchy 😉). And both can go up and down (especially when on treatment) - so if they disappear, that doesn’t mean the diagnosis disappears too.

Sheepcoat
Sheepcoat in reply to Foggyme

Hi Foggyme,

Oh I didn't realise that lupus can still be diagnosed even without the presence of the C3! If I'd known that I would've been a bit more persistent at the time, grrrr.

Yes you're right about the 'mild' label. On the days after exercise I feel absolutely terrible and can barely function, waking up feeling as though I've only had an hour's sleep with the dizziness and palpitations on top of it. But if I don't exercise, I mainly have the problem with my neurogenic bladder/UTIs which is extremely debilitating in itself at times, and the breathing problem and general tiredness/weakness. I used to work with someone with lupus and she had lots of other problems such as rheumatoid arthritis and she has fell over due to muscle weakness and had the steroid injections etc. I don't have joint problems except for the odd sharp pains in my big toes!

Thanks for the advice about the medication and that just because the hydroxy didn't work doesn't mean there aren't other options, but that's pretty much how she made it sound. I wouldn't mind trying steroids just for a couple of months just to calm everything down a bit. I just seem to be one big inflammatory mess at the moment with the Hashimoto's, gastritis, chronic cystitis, and all these antibodies.

I actually took out private health insurance over a year ago and so I can get quick referrals when need be. My endocrinologist would probably refer me actually, she's really nice and willing to help.

I did discuss the UTIs with my GP but he was recommending that I see a urologist, but I've already seen two! One just said I had a neurogenic bladder and didn't know what was causing it, and the other said I had got mild chronic cystitis, which is basically long term bladder inflammation. So I gave up with the urologists as I need to know the cause of the inflammation.

Thanks for the great words of wisdom and advice and I now feel that I might one day feel better again and be like how I used to be minus the fatigue, breathing problem, and UTIs. 'Blood hierarchy' made me laugh! 😂

Foggyme
FoggymeAdministrator in reply to Sheepcoat

Oh Sheepcoat...autoimmune disease is so damn difficult. And in my experience many of the other 'oligies' have little understanding of complex autoimmune disease and how it many impact on those that are referred to them (I've also been discharge from urology - who were very nice - but clueless once the cause was identified as inflammatory - and not within their remit). Like you...it's a case of finding the cause (autoimmunity of some description) and controlling the inflammation. I find that I can distance myself from the bathroom when inflammation is better controlled 🤣🤣).

Neurogenic bladder can be caused by autonomic dysfunction - many with lupus have it! Be sure to mention all your neurotically symptoms and ask about the neurological aspect of lupus (NPSLE) when you see a rheumatologist).

I sometimes wish some of these medics could have a 'mild' dose of lupus...just to see what mild really feels like (being hit by a high speed train on a good day 😉). That perk up their interest and actions a bit!

Pleased you laughed at the notion of blood hierarchy - it’s a tricky subject with rheumatologists because many of them cannot understand (and won’t accept) that many with lupus never get acute phase reaction in blood biomarkers (in other words, the holy grails (CRP, ESR, C3 and C4) are often 'normal' - especially in neurolupus). Well documented, but just try telling them that 😉😬).

I'm conscious that we're chatting away here and I'm being entirely 'off-topic' for this forum (apologies - if such are needed - to other forum members - but sometimes needs must - and lupus is far to close to my heart to keep silent when there's a need 🙂).

So...please feel free to message me if you feel the need...would also love to hear how you get on. And do post on the LupusUK forum...they’re a great bunch of folks, lots of experience, great at responding to questions...and brilliant at moral support.

Good luck and take care xx

Sheepcoat
Sheepcoat in reply to Foggyme

It does seem bizarre that an 'ologist' can diagnose you for one thing, but not really get to the bottom of the underlying cause, such as the inflammatory stuff. You'd think they'd have knowledge of all inter- connecting and overlapping illnesses, or at least know who to refer you to.

I will definitely ask about the neurological symptoms of lupus then! I will also find a rheumatologist who has a specialist interest in lupus. The more we talk about it, the more I think I must have lupus as once thought by the rheumatologist. It was even put on my GP record that I had it! I had to ring them up to take it off as the rheumatologist wrote another letter saying she wasn't convinced I had it, but my surgery left it on there, but I didn't want it on my record unnecessarily.

It would be great for one of the specialists to have a 'mild dose' of lupus, ha ha!

Thanks for all your advice Foggyme and I will keep you updated. I will post on LupusUK as I would like a recommendation for a decent specialist near to me in Birmingham.

Foggyme
FoggymeAdministrator in reply to Sheepcoat

How spooky...I'm also looking for a rheumatologist in the midlands...one who understands NPSLE.

Currently checking out Rheumatology Department at Queen Elizabeth Hospital in Birmingham. Worth a look.

If I hear of or find anyone who hits the spot, I'll let you know.

Sheepcoat
Sheepcoat in reply to Foggyme

Oooh yes, spooky! The QE is where I saw the rheumatologist about 3 years ago - I've just checked the letters from her and she was a locum. I also noticed that she didn't diagnose me with lupus due to being crithidia negative, as well as not have the C3 etc.

Foggyme
FoggymeAdministrator in reply to Sheepcoat

Hmm...there are different types of tests for testing dsDNA...and different labs can give different results on the same sample.

My understanding is that crithidia is just one of those tests...so, you may have had positive ds-DNA on one test but not on another.

It’s really unusual to discount a positive ds-DNA test because a different lab or a different test gave a different answer on a different day.

Also - it’s not just about blood tests...symptoms and other clinical manifestations count as well. So, positive ds-DNA plus your symptoms and history you describe...sounds very much like Lupus (as per your endocrinologist's comment too).

Worth noting that 40-60% of those with lupus never have a positive ds-DNS so goodness only knows why she gave a lupus diagnosis and then removed it (possible lack of knowledge due to inexperience?).

Sheepcoat
Sheepcoat in reply to Foggyme

I was positive for dsDNA on both tests, but it said 'dsDNA positive/ crithidia negative' on both of them, as well as negative inflammatory markers.

It does sound as though there's no clear cut diagnostic criteria like a lot of other conditions!

The rheumatologist did say in the letter that people can get raised dsDNA from viral illnesses, so I think she just put it down to that in the end! Even though I wasn't ill at the time. 🙄

Foggyme
FoggymeAdministrator in reply to Sheepcoat

Some (many) with lupus (or other autoimmune diseases) do not raise an acute phase response in blood bio markers - so inflammatory markers (CRP/ESR) can often be 'normal', even in the presence of inflammatory disease. Hardly surprising for those with deranged autoimmunity. This is especially the case with any form of neurological involvement - it is well documented that this rarely shows in bloods.

Any rheumatologist who is well informed and knowledgable will know this. Unfortunately, many don't.

I rarely have a raised CRP and never a raised ESR - movement in CRP, if any, is minimal, even when there is objective evidence of inflammation on scans.

Shame that the rheumatologist didn't take in the full picture and consider your full range of clinical symptoms - and have a greater understanding of the relevance of ds-DNA (rather than just dismissing it).

You're right...whilst there are some criteria for diagnosis, those criteria are not comprehensive, so much can be missed - especially by those who only rely on those criteria and don't have the experience or knowledge to exercise appropriate clinical judgement

Autoimmune disease is 'tricky' and rarely clear-cut. Disease presentation is unique to each individual so appropriate diagnosis requires a great deal of skill on the part of medics.

Sincerely hope that you're able to find a good rheumatologist and get the diagnosis, treatment, and care that you deserve.

Good luck

Sheepcoat
Sheepcoat in reply to Foggyme

Very interesting about not everyone having raised CRP etc! My ESR has actually been below the bottom of the range, but no one has ever said this has any significance. What sort of inflammation have you had on scans if you don't mind me asking? I have a lot of problems with breathing and feel as though my lungs are inflamed, but never been offered an MRI.

I think the rheumatologist just wasn't convinced I've got lupus as I'm probably not 'ill enough' for her and the fact I didn't have the raised crithidia, whatever that is! She put the DsDNA down to a viral illness and just said she wasn't convinced I had it.

I definitely need a better rheumatologist by the sound of it anyway.

Foggyme
FoggymeAdministrator in reply to Sheepcoat

Inflammation was identified on head MRI scan (mastoid air spaces, ethmoid air cells and sphenoid sinuses), acute on chronic gastritis via endoscopy, and chest x-ray (base of left lung). And never a raised CRP.

They'd probably only do an MRI on lungs if a chest x-ray or CT scan picked up anything that needed further investigation, or if they suspected a condition that doesn’t show up on X-ray (i.e. small cancer tumours or pulmonary embolism - usually evident from other clinical signs).

Low ESR could have quite a few causes (iron deficiency anaemia, blood disorders, thyroid issues are just a couple).

Here's some links with information about low ESR:

gpnotebook.com/simplepage.c...

en.wikipedia.org/wiki/Eryth...

And this site is also excellent for looking up all blood tests:

labtestsonline.org.uk/tests...

Surprised your GP hasn't investigated it given your health issues - but then, I suspect not many pay that much attention (unless you’re lucky enough to have a very good GP).

Funny (not really) what you say about not looking 'ill enough'... so many people with lupus (or other autoimmune disease) are told 'oh, but you look so well'... usually at a time when we're feeling practically dead inside.

Here's a paper you might be interested in reading:

link.springer.com/epdf/10.1...

It makes me so cross when people are dismissed like that (Have you heard of medical gaslighting - bet you’ve experienced it). If anyone ever tells you 'oh but you look so well' or 'you don't look sick'... challenge them! If nothing else, it’s a ridiculous thing for a doctor to say...especially if they don't know you! I usually say 'yes, I'm deceiving aren't I' ...then I tell them why.

Here's what lab tests online say about anti dsDNA:

labtestsonline.org.uk/tests...

Shocking really, your rheumy (ex-rheumy) doesn't appear to have considered any of your clinical symptoms.

Some viruses can induce transient positive anti ds-DNA (just wondering how far apart the positive treats were) - but she could have done a viral screen to test for those. 🤷‍♀️.

More about anti ds-DNA:

en.wikipedia.org/wiki/Anti-...

Yes...I think you need a better rheumatologist - but goodness, they’re often very difficult to find!

Sheepcoat
Sheepcoat in reply to Foggyme

Interesting about the inflammation on your head MRI! It just goes to show if you can get the scans and someone who is willing to get to the bottom of it all, you can actually get somewhere. I've got chronic gastritis and cystitis so there's obviously inflammation going on.

Yes I think you're right about a doctor only doing an MRI on lungs if an x-ray showed there was something amiss. I think this inflammation is definitely causing problems with my lungs, but I think it can also be neurological can't it? Peripheral neuropathy or some other similar illness.

As for the low ESR, I think doctors tend to ignore any blood results which are just abnormal by themselves, as they usually need 2 or 3 different abnormal results for them to think there's any clinical significance. I also had a low globulin result of 23 (range is 24- 37). The endocrinologist didn't comment on this, but it might not have any significance within her remit.

Yes I know exactly what you mean about doctors saying you look well or writing it in their clinic letter! People used to say it at work aswell. I don't know whether it's meant to make you feel better that you don't look terrible, or is it that they don't believe you.. But if they've never had the chronic exhaustion, then they'll never understand how you feel. It is strange how you can feel so tired and exhausted on the inside, with maybe dizziness, palpitations, or other horrible symptoms, yet look 'great' on the outside!

I think the rheumatologist I saw was one of those who's always in a rush. She also said that the only other option other than the hydroxychloroquine would be steroids and she didn't want to give me those as the side effects are terrible 😕 So I got the impression she doesn't think I'm ill enough to try anything else.

Hmm I definitely need a second opinion!

Find a natropath, any natropath. They should look deeper into symptoms. You could most definitely be deficient. Sounds like a possible thyroid problem. There are 5 total tests to check for problems with the thyroid. I'm sorry and I hope you get more answers soon.

Sheepcoat
Sheepcoat in reply to Vinnie77

Thanks Vinnie. I have been diagnosed with Hashimoto's thyroiditis, but it's currently untreated as I'm not classed as over or underactive at present, which leads me to believe my problems are caused by another illness linked to Hashimoto's. I will keep digging.

I don't now your age, but the older we get the B12 levels seem to naturally be lower it seems. If you were to have total destruction to your parietal cells, you would still have enough B12 stored in your liver to still test within normal range for around 5 years +/-, even if you weren't getting any upon intake of B12 rich foods, so while I'm not a doctor or an expert, I think your physician should continue to find the culprit. If you have your Endocrinologist under some sort of spell or something, and or, you can somehow persuade them to do a Serum Gastrin Test, and it comes back elevated, you will have either Pernicious Anemia or Gastrin Carcinoma (unlikely with your symptoms), but while they're at it, might as well solidify it with an IF antibody test. (:-)

Respectfully,

I'm 40 but have been having these symptoms since I was late 20s! Last time I went on a 3 hour bike ride I felt terrible for about 4 days after, ie. Completely exhausted. Even though I've got Hashimoto's, I'm not sure it would cause these symptoms on its own, as my thyroid levels are considered to be quite good and not even borderline underactive at the moment.

Thanks for the tips on the serum gastrin and the IFA. I will ask the endocrinologist if she'll do these, although some specialists can be a bit 'particular' in what they test for if it's going out of their remit and specialism, but no harm in asking. If no luck with the endo/GP, I'll pay privately. I need to get to the bottom of it. Thanks again.

Sheepcoat,

I have had many of your symptoms. I don't know how many times I voiced I have no muscle recovery and got nowhere. I would say I know my capabilities, I know my strength something is very wrong.

You listed that your ferritin was low, what is it now?

Besides vitamin B12 deficiency I was really low in vitamin d. It is impossible to say what vitamin improved which symptom. However, one of the two greatly approved my weakness and inability to recover from exercise. But I would bet it was vitamin d with my legs. I felt very little improvement with the first month of shots but a lot of improvement once I got the vitamin d up towards normal.

It is the strangest and most frustrating occurrence when you don't have atrophy but you lack strength and recovery.

I have a question for you since many of our symptoms overlap. Thyroid - how did you discover the Hashimoto's? Ultrasound?

Sheepcoat
Sheepcoat in reply to Litatamon

Hi Litatamon, yes you do know your own body and your own capabilities and when something is wrong.

My ferritin is now 67.01ug/L (13- 150), but this is only after 6 years of taking supplements! It was around 40 at first and the endocrinologist at the time said it was too low. I am also slightly low in vitamin D and just below the range, so I've started taking the D5 capsules.

Yes it is all very frustrating. I used to be a gym instructor believe it or not and was very into my fitness, but when I started really suffering for days afterwards, I just thought I can't continue exercising at the same level. I do think a lot of my problem is to do with breathing and lack of oxygen, but can't seem to pinpoint what's causing the breathing problem. I've just been diagnosed with Hashimoto's and I read the other conditions that it can be linked to, such as peripheral neuropathy and B12 deficiency, so thought I would start exploring these.

My thyroid problem was first picked up by blood tests as it was showing as overactive. I then had an ultrasound and the radiologist thought I had Graves disease, but I haven't got the antibodies. I've got the antibodies for Hashimoto's though and so the endocrinologist said it's that. I also had a thyroid uptake scan where you get injected with the radionuclide and it showed it to be underactive, which also means Hashimoto's along with the antibodies. It's all so complex! What problems have you got?

Litatamon
Litatamon in reply to Sheepcoat

Well Sheepcoat, I hope you get to the bottom of it.

I was asking questions about your thyroid because I have always felt that there was a missing piece still for me. I had low b12, which I found (103) and at that point I knew intuitively something else was there and had a hard time getting tested for vitamin d. And of course I was right, sigh (7.6/19 - two different measurement types).

I also have an oximeter. I bought it because my roommate refused to follow some of our provincial rules for Covid and I bought it to hopefully keep both of us safe. A lot of reports came out saying that people were becoming critically ill because their oxygen levels were dropping without normal markers. I know it works relatively fine - but obviously not perfectly - as she was a consistent 98/99 and I was always anywhere from 92-96 (which is most definitely off) given my fitness level. And I have had sepsis twice and had to work hard to get those levels up. And they were up.

I have high Thyroglobulin antibodies with my thyroid, but the lab has written that values up to 800 may be seen in perfectly healthy individuals. I was 91 last fall (paid for the test) and the normal is less than 40.

The gist is I know there is something still unfound intuitively. Like you said, I know my own damn body.

I hope you get some answers soon Sheepcoat. Hopefully your endocrinologist is helpful going forward.

---------

Sheepcoat
Sheepcoat in reply to Litatamon

It sounds as though your vitamin D was very low then. Mine was something like 70 which is just below the normal range, but I've been taking multi-vitamins for 6 years. I've recently started taking D3 though. What do you take for your low vitamin B12/D?

Perhaps you do have a thyroid problem, but I don't think they tend to really diagnose it unless your thyroid is showing as under or overactive. If you've just got the antibodies, they fob you off with 'so many percentage of the population have these antibodies' etc. I've got thyroglobulin antibodies which weren't that elevated (they were 27 and should be less than 20 on the lab range), but I also have quite high thyroid peroxidase antibodies, which gives the diagnosis along with the thyroid scans I had. I think you should be able to get an ultrasound if there are thyroid problems in the family as some people can have nodules.

Perhaps your oximeter is working OK, as my main symptom is not getting enough oxygen and taking deep breaths all the while. I used to be really fit, but for a couple of days after exercise my air hunger would get worse. I've stopped exercising for that reason as it was making me feel worse. I miss the days when I could exercise to a high intensity and then just feel achy the next day instead of completely exhausted and unable to function.

Can I ask where did you exercise? Indoors?

Brain fog, dizziness and heart palpitation( and need to take deep breaths can be signs of oxygen deficiency.

It’s very easy to check. Buy a small can of oxygen, breath it when you have those symptoms and see if you feel better. If it’s oxygen, you will feel the difference in minutes.

Could you check this first - either rule out or confirm?

Sheepcoat
Sheepcoat in reply to Tuscansun

Hi Tuscansun, I actually bought an oxygen monitor which clips onto your finger. I've checked my oxygen throughout the day and night and yes my oxygen level does keep dropping with drops of more than 4%, and so that's probably why I feel worse the day after exercise as I'm never getting enough oxygen.I'm constantly having to take deep breaths. But the question is what is causing the shallow breathing?? The endocrinologist doesn't seem to think it's related to Hashimoto's.

It’s not about shallow breathing - you can have normal breathing and still lack of oxygen in blood.

I am careful at trusting consumer “medical” technologies - unless it’s medical grade the results are not very reliable.

It might be that air in your environment has lower oxygen - try to track if you have the same symptoms at home, office or in forest/park - to understand if it’s external factor or not.

If it’s external - then you know your answer.

If there is no difference, then dig into possible internal causes.

Do you know your haemoglobin level? How healthy are your arteries?

Any pulmonary conditions? Did you have any problems with lungs before? Pneumonia? Asthma?

Stress? Anxiety?

It might be related to auto immune though not to Hashimoto directly.

Autoimmune usually created by over reactive immune system which targets your week “links” so to speak. Immune system over reaction usually triggered by external factors.

Sheepcoat
Sheepcoat in reply to Tuscansun

I always thought that I was probably shallow breathing as I'm constantly taking deep breaths, but I see what you mean about just having lack of oxygen in the blood.

I'm pretty sure the oxygen monitor I have is a good one and if I've had a bad night's sleep it seems to reflect that in the results. I also showed it to the respiratory consultant and he seemed happy with it.

I do seem to have the same symptoms whether I'm at home or in the office etc, but it's always 10 times worse the day after exercising.

My haemoglobin level is normal. I have got an aortic valve defect, but the echo scan shows that my heart and valves are working normally. I've got mild asthma, but my inhaler doesn't relieve the 'air hunger' symptoms. When I first started having these symptoms my job was very low stress and that was when it was at its worst back then (12 years ago).

So I need to know how to calm down my immune system then really, as got Hashimoto's disease, lupus antibodies, as well as mild chronic cystitis and gastritis.

I am not saying that your oxygen monitor is not good - my point is keep your mind open that some data might be not accurate.

It seems you have a bundle of conditions many of them might have the same root cause.

The problem with official medicine approach is they treat each organ separately and don’t look at the whole body.

Look at functional medicine doctors books and videos.

Sheepcoat
Sheepcoat in reply to Tuscansun

Ah OK, yes best to keep an open mind. I know what you mean when not using the official medical equipment though. My monitor cost about £100 as wanted to measure my oxygen properly because knew I had a problem.

I do feel like all of my problems have the same root cause because the gastritis /cystitis are just symptoms of something else and not conditions in their own right.

That is so true about doctors not looking at the whole picture, hence why I've seen tons of different specialists for all different symptoms. It's extremely annoying that I've never got to the bottom of it.

Tuscansun
Tuscansun in reply to Sheepcoat

You can definitely get to the bottom of all causes - start looking for external and environmental factors around you. Try to recall when your symptoms started and what happened before that - that might give a clue.

Sheepcoat
Sheepcoat in reply to Tuscansun

Thanks Tuscansun. I do think I had a bout of very bad flu just before my symptoms started, but can't be 100%. I know that illnesses can trigger these autoimmune problems though.

Tuscansun
Tuscansun in reply to Sheepcoat

Good luck! It requires patience but it will be well worth it and I am absolutely sure you can heal yourself.

I had to self-consult myself because of ongoing symptoms similar to yours and more including walking like I was drunk, tinnitus and supposed depression, but luckily no bladder issues. I was not able to get B12 blood tests done during the initial Covid lockdown, nor was I able to see a GP other than getting a telephone consultation during which it was obvious the GP was not B12 aware or sympathetic. Whether I am medically B12 deficient it remains to be seen, but even if I was, the general consensus on this very helpful forum is that getting adequate treatment from the medical profession appears to be a constant battle.

So, rightly or wrongly, I started taking oral B12 supplements to see if any of my symptoms improved but I didn't really notice any change over a couple of months. I then realised that by doing this I would skew any future blood test results for some time, so taking into account the minimal risk and low cost, the fact that I am Celiac, have CFS/ME, was once Vitamin D deficient and had a lowish B12 level of 237 ng/LI about 3 years ago, I decided to go it alone by going down the self injection route to see if I can make improvements to my health. I'm sure I would have done the same as an experiment even if I didn't have those underlying conditions as I simply could not ignore the new-found relevance of my symptoms and B12.

So 16 x IM injections 1mg / 1ml Hydroxocobalamin so far on every other day and I am feeling some changes. They are relatively small but noticeable. I still have good days and bad days but on the good days I can now climb a staircase without thinking about it, where as before I would stand at the bottom wondering where the energy would come from. My hands and feet are warmer now, they used to be stone cold!. I don't always forget what I am saying half way through a sentence nor am I as breathless as I was. Even my walking is a little straighter. Now, I realise these are early days and I cannot be sure it is the B12 or a placebo effect which is making the difference so I will reserve judgment for a couple of months. Its hard to be too positive and confident after feeling so bad for so many years! I have to admit though that the signs are very good and I'm in for the long haul of maybe many months or even years of self treatment if I keep seeing improvements.

In short, if you think a B12 deficiency might be a factor in your ill health, why not try going it alone like me and try self injecting? (Its highly unlikely you will get B12 injections via your GP with an in-range test result) Its cheap, you cant overdose, its unlikely you will get any side effects. Not to mention its easy to do and pretty painless - first time is a little daunting but that soon passes.

Note: If you go down this route, there is the VERY small risk of anaphylactic shock so you might want to consider having the first injection done privately (I didn't consider it but thats just me) As for beauty or health salons administering injections? The jury is out for me on them - Big £££'s and for what??.

B12 deficiency and Pas are potentially very serious conditions and I don't want to trivialise them by simply saying have a few injections and you'll be fine. I thought long and hard before SI but weighing up my symptoms, the obvious lack of medical support in my case and the minimal risks involved, it was a no brainer for me to try it alone. But, just so you know, I am not medically trained, so my post is for information only and you should always seek professional medical advice, diagnosis or treatment.

Sheepcoat
Sheepcoat in reply to ManCave

Hi Mancave, yes it can be a battle to get any treatment if you've got anything a bit different to the norm!

Thanks for the info on the B12 injections. It is something I might consider, but I will get the relevant B12 blood tests done first and the antibodies tests I think.

ManCave
ManCave in reply to Sheepcoat

Good luck with everything and I hope you get the answers and treatment you deserve. Best wishes.

Sheepcoat
Sheepcoat in reply to ManCave

Thanks ManCave

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