Blood test abnormalities

[Katyw]

Hi there

I was wondering if someone could advise me. I've recently had some blood work taken and the results are unusual. My b12 and folate were high as was my
liver function. My liver function has been on and off high for a few months now but never this high. I don't take any b12 or folate apart from whats in the multi vitamin I take.

Serum vitamin B12- 919 ng/L (220-700)

Serum folate >20 ug/L (2.6-17.3)

ALT 75.0 (0.0-30.0)
AST 45.0 (0.0-35.00)

My doctor won't help as he suggests the serum results are from eating well!!! I am having an ultrasound on my liver to rule stuff out.

Thanks

K

 

[Martial]

Any other supplements, herbs, or medications you are currently on? A lot of people get elevated liver enzymes from things even as simple as herbs at times.

 

[Katyw]

Hi Martial

Yes I'm on lots!! I did have high ALT levels before taking anything though but all of the vitamins could have increased it to that level.

Supplements: high dose Vit C, Vit E, VegEPA, Vit D, cq10, multivitamin, milk thistle, DHEA, niacin.

Would this increase b12 and folate too?

K

 

[Martial]

I don't know anything out of that list that would significantly raise levels as a common possibility, the high folate and b12 could be timing of when you got the test done though. If you just took a b complex or vitamin it might have raised blood levels higher then normal, or perhaps from another cause. None of those look immediately suspect of raising ALT but it could be some viral or bacterial infection that is causing toxins to build up, among other things. Nonetheless high ALT can signify many different things, sometimes in more rare cases it point to muscle damaging conditions. I would probably drop the vitamins and supplements for now until its under control though.Generally when dealing with things like liver or kidney dysfunction you want to keep things very simple, every pill, medication, herb and supplement is more things for them to process and filter out of your body. I am not a doctor though, just basing of my own experiences and learning, speak to your medical practitioner before doing any major changes in diet or nutrition.

Ps. how is your diet? What do you usually eat in the course of a day?

 

[Katyw]

I'd be reluctant to stop any of the supplements though as these have helped me a lot. I have been ill with ME for 14 months now and was bed bound initially for the first 6 months and feel I've come on with this regime.

I feel like I have constantly got a viral infection and my blood work also show a constant high CRP, ESR and white blood count but doctors have said it's just post viral!

My diet isn't too bad -I'm gluten and dairy intolerant since being ill so I had to cut these out. I might eat a bit too much sugar than I should!!

I read that a lot if people with ME have enlarged livers that are slow at getting rid of toxins.

K

 

[Martial]

I'd be reluctant to stop any of the supplements though as these have helped me a lot. I have been ill with ME for 14 months now and was bed bound initially for the first 6 months and feel I've come on with this regime.

I feel like I have constantly got a viral infection and my blood work also show a constant high CRP, ESR and white blood count but doctors have said it's just post viral!

My diet isn't too bad -I'm gluten and dairy intolerant since being ill so I had to cut these out. I might eat a bit too much sugar than I should!!

I read that a lot if people with ME have enlarged livers that are slow at getting rid of toxins.

K

Well if they helped then maybe stay on what you think does. Really a lot of it is speculation on what I often hear. The diet definitely looks awesome though Katy! I think you already know about the sugar too, its immune suppressive so definitely a no go too! Try taking goat milk as a dairy source though, the extra calcium and other things is very helpful, it also is anti inflammatory and helps heal the gut because of its high glutamine content.

 

[Katyw]

It's just hard to know whats working or not! Definitely agree about the sugar- I've got a sweet tooth and have been trying to resist!

Thanks for your advice. Will look into goats milk.

K

 

[Little Bluestem]

Milk thistle is supposed to be good for the liver and reduce liver enzymes. It is kind of odd to see such high ALT while taking it.

What form of folate is in your multivitamin? One study found that 4/5 post-menopausal women (I don’t know if that applies to you) could not utilize folic acid. When that happens, it accumulates in the blood.

 

[Kati]

Hi @Katyw,
before cutting out the sugar, well know that sugar does not raise liver enzymes. And I refuse to believe that sugar decreases immunity. This is not mainstream medicine thinking.

Along with AST and ALT, your dr should have performed gamma GT and alkaline phosphatase. These help in rulimg out gallbladder disease. Do you have pain to your liver (usually right upper quadrant, sometimes in the middle of the middle) or something that feels like indogestion?

My illness started with an EBV infection and my liver and spleen were enlarged. Within 7 months I had a necrotic gallbladder. This is fairly common as per Hilary Johnson's book Osler's Web, p.33 . So an abdominal ultrasound (including the liver) is a very good idea.

It is very interesting to me that your ESR and CRV are both elevated, same for me. And. Get the same dismissive reactions from my local drs. What range is your ESR?

If you can consider seeing a ME specialist. Unfortunately they cannot 'fix' bone head drs, however at the very least you could get decent viral titers and perhaps immune markers. And validatin is a very, very good thing.

Best wishes.

 

[Katyw]

Thanks for your replies.

@Little Bluestem I thought the milk thistle would reduce the alt too. I must admit though- I did start feeling better since taking them. No- I'm not post menopausal.


@Kati thanks about the sugar information, I didn't think that would be affecting the liver.
I don't get any pain around the liver or gall bladder area so pretty sure that's fine. I'm glad I'm having an ultrasound though.
My illness was started by a virus too but still haven't found out what! I've tested for lots all coming back negative. My ME doctor thinks it could be one of the herpes family so I've started on aciclovir. I have been ill a year now with ME and constantly feel like I'm fighting a virus or infection. Do you feel like that?

My ESR has always been around 50-60 and my CRP around 20. I've also had high lymphocytes and white blood count on numerous occasions but not constant.

Ha ha- bone head doctors!!! I have been referred to different specialists investigating all this but have come away with nothing! The NHS don't regard ME as a chronic multi systemic illness! I had my viral tilters done and basic immune markers but not the ones I wanted. My cd4 was elevated and I had extremely low antibodies to the pheunommocal infection. But theyaren't taking things further. Something is definitely going on in my body!!!

Are you on any treatment?

 

[Jonathan Edwards]

I'd be reluctant to stop any of the supplements though as these have helped me a lot. I have been ill with ME for 14 months now and was bed bound initially for the first 6 months and feel I've come on with this regime.

I feel like I have constantly got a viral infection and my blood work also show a constant high CRP, ESR and white blood count but doctors have said it's just post viral!

My diet isn't too bad -I'm gluten and dairy intolerant since being ill so I had to cut these out. I might eat a bit too much sugar than I should!!

I read that a lot if people with ME have enlarged livers that are slow at getting rid of toxins.

K

Dear Katyw,
I prefer not to give personal advice, as I am not anybody's doctor here and am no longer a practicing physician. However, I am a bit concerned by what you have posted here. In as much as I can get an impression, I do not think you have ME. You have something wrong with your liver. Liver disease is quite capable of giving people the same symptoms as ME or CFS. To my mind the test results you have exclude ME on the basis that there is another explanation - organic liver abnormalities.

It is hard to give a clearly formulated opinion just on what you have said. However, one or two comments I can make.

A CRP of 20 does not occur in a 'post-viral state'. You can say to your GP that this is my firm opinion as a rheumatologist and immunologist. It either occurs because of ongoing production of IL-1, TNF or IL-6 in some inflamed tissues or because of local activation of liver macrophages (Kuppfer cells).

The ALT and AST results are not particularly high but in the presence of a CRP of 20 almost certainly indicated a liver problem.

But my last concern would be whether it is possible that aciclovir is responsible for the liver abnormality. Have the ALT and AST and CRP gone up since starting it? I would be very concerned about starting a drug like that if you have a liver problem that has not been diagnosed.

A liver ultrasound sounds sensible but it may be normal even if there are significant things going on in the liver. If I were looking after you I would want more detailed specialist investigation.

It doesn't sound like ME!

Best wishes

 

[Katyw]

Hi @Jonathan Edwards - thank you for your response. I appreciate your know else and advice on this.

The thing is, I am pretty sure I have ME as I also have been diagnosed with PoTS which is very common in ME patients. I am also in the early stages so therefore such liver abnormalities have been evidenced. I do appreciate what you are saying about my liver but my previous ALT back in May was within range at 30 and only slightly raised 37 the time before that. Also I've never had any issues with increased AST levels until now.

Further to this I have no symptoms regarding the liver. I don't have dark urine, pale stools, itchy skin, painful abdomen. My rheumatologist has done an autoimmune screen test on the liver and that was fine.

Do you think the ultrasound would pick up anything? What further tests would to see if it is liver disease?

Would a potential liver issue be related to the increased b12 and folate levels ?

Yes, the results have increased a bit since starting aciclovir.

Thanks in advance

 

[Kati]

@Katyw thing is your CRP and ESR are significantly high.

In my example the first and second liver U/S showed sludge in the gallbladder. The 3rd showed thickened biliary duct. However if your liver is inflammed as a whole, U/S might not show that.

What kills me is that physicians seem to put the fault on ME and this automatically disqualify you of any further diagnosis.This is a global problem.

Keep us posted.

 

[Katyw]

Also, forgot mention before that I've been tested for hepitatits b and c and they were both negative

 

[Katyw]

Thanks @Kati

I know what you saying about doctors not looking at other possibilities but I've been referred to many specialists and had so many tests and nothing has come back abnormal apart from the inflammatory markers. I see an ME specialist and I've had mitochondrial testing and scored low on that. I've also got endrocine issues with very low cortisol and DHEA. My mum also has the same illness and symptoms so there is a genetic link to what I've got. I suffer from sore throats, swollen glands, headaches, severe dizziness, chronic sinus infection orthostatic intolerance and all the things that point to a dysfunctions central nervous system. The worse thing is mental fatigue too. I've been told by numerous specialists that it's ME.

I do think its important to check out this liver issue though. My GP won't refer me to a heptalogist so I have to make do with an ultrasound which like you said may not show anything.

K

@Katyw thing is your CRP and ESR are significantly high.

In my example the first and second liver U/S showed sludge in the gallbladder. The 3rd showed thickened biliary duct. However if your liver is inflammed as a whole, U/S might not show that.

What kills me is that physicians seem to put the fault on ME and this automatically disqualify you of any further diagnosis.This is a global problem.

Keep us posted.

 

[Jonathan Edwards]

Hi @Jonathan Edwards - thank you for your response. I appreciate your know else and advice on this.

The thing is, I am pretty sure I have ME as I also have been diagnosed with PoTS which is very common in ME patients. I am also in the early stages so therefore such liver abnormalities have been evidenced. I do appreciate what you are saying about my liver but my previous ALT back in May was within range at 30 and only slightly raised 37 the time before that. Also I've never had any issues with increased AST levels until now.

Further to this I have no symptoms regarding the liver. I don't have dark urine, pale stools, itchy skin, painful abdomen. My rheumatologist has done an autoimmune screen test on the liver and that was fine.

Do you think the ultrasound would pick up anything? What further tests would to see if it is liver disease?

Would a potential liver issue be related to the increased b12 and folate levels ?

Yes, the results have increased a bit since starting aciclovir.

Thanks in advance

It is a pity that I am not going to be able to go into this in any detail for you but I am familiar with this sort of situation and my feeling is that calling it ME is unhelpful - rather as Kati suggests. When problems present like this one has to keep a very wide view. There is a problem in the liver but that might be caused by a variant of a disease we do not normally think of in relation to the liver. Polymyalgia rheumatica/giant cell arteritis can do this sort of thing and there are no diagnostic tests to make a quick diagnosis.

So you have a disease that so far we know very little about that has given you fatigue and malaise and orthostatic intolerance and abnormal liver tests (unless that is the aciclovir or something else you are taking as Martial suggested). Orthostatic intolerance is not a pointer to ME. It is a very non-specific feature of illnesses that cause malaise. It is just that in most such illnesses nobody takes any notice of the OI because the focus is on other things. This is where the chat on PR tends to worry me because ideas like POTS never figured on my diagnostic routine because I needed more reliable indicators of what was wrong.

You say you are pretty sure you have ME but what does that actually mean if none of us know what these various processes we lump under ME are? All it really means is any one of perhaps a dozen CFS-style diseases that are so far not any of the known causes of such symptoms. But what if it turns out to be one of the known causes and has specific treatment?

I don't want to cause any distress with uncertainty but it does seem to me that there is considerable uncertainty here. I personally do not think ME is an acceptable label for an illness with a CRP of 20. Although people talk of ME being 'multisystem' one of the most important lessons one learns by one's mistakes as a doctor is not to say 'oh it's multisystem, this result is just another bit of that'. All multisystem diseases we know of are very specific in the way they affect each system. There is nothing in the literature about MEs giving a CRP of 20.

 

[Kati]

It just shows to you @Jonathan Edwards that the medical neglect going on to patients like us is unbelievable.

Physicians as a whole are being told not to pay attention, not to investigate, and to treat with CBT and GET. Patients are being told not to pay attention to their symptoms.

It is unbelievable.

The new clinic that has opened in Vancouver is a symptom management clinic. They have no money for testing. They basically are being told by the purse holders (government) to take it one symptom at a time and try to fix it.
It is insane.

 

[JamBob]

Thanks @Kati

I know what you saying about doctors not looking at other possibilities but I've been referred to many specialists and had so many tests and nothing has come back abnormal apart from the inflammatory markers. I see an ME specialist and I've had mitochondrial testing and scored low on that. I've also got endrocine issues with very low cortisol and DHEA. My mum also has the same illness and symptoms so there is a genetic link to what I've got. I suffer from sore throats, swollen glands, headaches, severe dizziness, chronic sinus infection orthostatic intolerance and all the things that point to a dysfunctions central nervous system. The worse thing is mental fatigue too. I've been told by numerous specialists that it's ME.
K

Unless Acyclovir is known to cause these problems. I'd definitely get a consultation with a knowledgeable hepatologist if I were you. Can you change to a different GP in your practice if the current one is being obstructive? Or is there some other GP surgery in your area that you could register with?

If you've got another disease, it may well be that you could get treated and you might get relief from some of your symptoms - think how great that could be!

I only write this because I have experienced several of my autoimmune diseases being misdiagnosed as ME/CFS. For example, a consultant endocrinologist misdiagnosed my T1 Diabetes as ME/CFS and I was sent away being told I should do some psychological work to deal with my fatigue and shamed into feeling like I'd cause my own fatigue and sickness!!! It's amazing what a bit of insulin can do for fatigue (a GP made the correct diagnosis).

The same thing happened with my autoimmune thyroid disease (which is very common in T1 diabetic women) but was misdiagnosed by the NHS consultant as ME/CFS. So my point is just because your NHS consultants say you have ME/CFS it may be that they are missing something that is potentially treatable.

Also I think a lot of NHS doctors (not Prof Edwards obviously!) are either lacking in time or somewhat intellectually lazy, so they just read whatever the last consultant wrote in your notes (which might be ME) and do not think about the issue much further - the tests they sent you for might not be the right tests, or maybe they didn't interpret the tests properly (this is another problem I have encountered). And as Professor Edwards says, this may be a developing problem for which there aren't easy tests, but that doesn't mean there isn't a problem that could be potentially treated if it can be identified.

Also consider the possibility that you have lots of different problems that aren't necessarily connected. Maybe you have some potentially treatable disease and also other symptoms that can be attributed to ME/CFS. It's possible to have lots of diseases and symptoms concurrently that may not be part of one central problem.

I only write this because it was a huge relief to get some insulin and some thyroid hormones - it may be that there is some treatment out there for some of your unpleasant symptoms.

PS. I take DHEA for endocrine reasons and have read that it is known to be low in inflammatory diseases, see for example:

"Interestingly, serum levels of DHEA are decreased in patients with inflammatory disease including lupus, and these levels seem to inversely correlate with disease activity."
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2701249/

 

[Katyw]

Thanks so much for your information @Jonathan Edwards I appreciate your input. You're right, I need to investigate things further. I was considering going private anyway as at least this will be quicker and hopefully better. I'm just not sure what type of specialist to see. I would be very happy for it not to be ME as it might be something that can be helped. It all started with a virus (suspected scarlet fever) but even that was never definite. You haven't concerned me you are just being very honest with your advice so thanks

Thanks @JamBob. You have some excellent advice too. I haven't been diagnosed by an NHS consultant as they are clueless- it's is a private ME doctor who has helped. She has looked into specifics like T3 and T4 thyroid, diabetes and adrenals. I do take DHEA supplements as my levels were extremely low. I just feel I got a number of issues going on which started with a rash and sore throat 14 months ago and has developed so I'm mainly bed bound! I would love for if to be something treatable of course. I don't know what else to get checked for as I have seen an immunologist, rheumatologist, infectious diseases, cardiologist, ENT. What type of specialist do you think I get referred to?

Thanks to everyone x

 

[Valentijn]

The problem is that elevated ESR and CRP (and other abnormalities) get ignored by doctors, once a patient has a diagnosis of ME/CFS, and probably with other chronic illnesses as well.

If it's only been abnormal once, the doctor will dismiss it as a short term problem which will resolve itself. And if it's been abnormal repeatedly, then it's dismissed as a chronic problem which isn't important because it hasn't killed us yet.

We need good doctors who will take us seriously and authorize the appropriate investigations for our symptoms and abnormalities.