Anybody really good with blood test d... - Pernicious Anaemi...

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Anybody really good with blood test diagnostics?

Chancery
Chancery

I'll say right off the bat this isn't a P.A. issue (I don't think!), but I didn't know where else to post this and felt that the thyroid community & pernicious anaemia forums have the most expertise with blood tests, since their lives seem to be ruled by them!

I have had high Ferritin for over a year. Recently I had it retested at a new doctors and it is just going up and up. It is not hemochromatosis as my transferrin, saturation and iron are all normal range. This means it's probably an inflammation problem, a chronic one, given how long I've had it.

On my last blood test, my doctor was looking for possible autoimmune markers (at my request) and as well as the even higher ferritin it brought up high LDH- architect (Lactate dehydrogenase). This is in all tissues but is only released into the blood when tissue is damaged. In other words, I am experiencing cell death.

I've tried Googling the two things together and get zero result. Plenty of ideas for one and plenty for the other, but not for the two together. Has anybody any ideas for why these might be occurring together, or any experience of having these two things together?

Out of the choices for high LDH, it seems unlikely to be my liver, kidneys or a heart condition. The two most likely is muscle damage (I suspected Dermatomyositis, hence me asking her to check) and cancer. Obviously the idea of cancer worries me!

If anyone has any suggestions or ideas I'd be grateful to hear them. Thanks!

52 Replies
oldestnewest

Are there any signs of b12 deficiency? If b12 is low the body can't utilise iron properly to make red blood cells. When a b12 deficient person gets treatment with b12 injections it happens that ferritin drops. Check this article: ncbi.nlm.nih.gov/m/pubmed/2...

Chancery
Chancery
in reply to palmier

No, I've been on B12 injections for years. I'm actually currently trying to space them out to have fewer! And, in fact, I'd had a B12 injection literally the day before one of the ferritin tests where the result had gone up. So no, B12 isn't the issue. Maybe my B12 has helped keep my ferritin lower!

Hi. This might not be relevant, but it's worth bearing in mind that your Ferritin will be measured on an analytical platform from one manufacturer. If you've changed GPs, does the sample still go to the same lab? Different labs use different platforms and the numbers generated, whilst precise, might not be strictly comparable between the platforms. Just to confuse things further, it doesn't mean that either one is better than the other!

I was a scientist in a pathology laboratory and when the method to a different manufacturer it caused no end of problems.

FlipperTD
FlipperTD
in reply to FlipperTD

Oops! I meant 'When the method was changed to a different...'

Chancery
Chancery
in reply to FlipperTD

Thanks, Flipper, but I'm in the UK, based in Edinburgh, and I think all the NHS bloodwork is done at the same place. I think it's done at the Western General hospital here. As far as I know, the NHS doesn't farm out its work to commercial labs - I suppose unless they have to. I assume all the bloods are done exactly the same as it is in the same place, although different doctors. Unless someone knows different....?

FlipperTD
FlipperTD
in reply to Chancery

Hi. I'm sure you're right.

The NHS does farm some work out, but this is typically to other NHS labs, when the test numbers are very small and it's certainly not practical to perform everything everywhere.

Red Cells have abundant LDH. If samples are not handled appropriately then LDH levels can be raised erroneously due to haemolysis in the sample, although this would probably show up with a rise in potassium also.

I hope you get to the bottom of this. good luck.

Chancery
Chancery
in reply to FlipperTD

Yes, ironically, in the test done immediately before this one that's exactly what happened. I got elevated potassium and had to have retested (it was fine). Maybe my docs are just really cavalier with blood samples. Alright for them, it's not coming out their arms!

FlipperTD
FlipperTD
in reply to Chancery

Me too. I had a phone call to inform me that I needed a repeat, but no-one there to explain why. It was obvious when I saw the results. Potassium.

Having samples taken in the surgery and sent to the laboratory is convenient for 'us', as patients, but for 'us' as analysts it makes more problems. The longer the time taken from 'arm to analysis', the less reliable some tests are. The longer it takes to get the sample from the vein into the tube, the same applies. Smaller gauge needles: same applies. Even when we're not told to fast, fasting samples are almost always better. Samples should [almost always] be mixed gently upon collection, to ensure any additive in the tube is adequately mixed. Under-filled tubes cause problems too! Whenever I saw a suspicious result, the first thought was 'is this genuine?'

I hope you get to the bottom of your problem!

Chancery
Chancery
in reply to FlipperTD

Thanks, Flipper - comforting to hear from an 'insider' who knows blood tests are not always as terrifying as they look! My dr today, who I'd never seen before, was both surprisingly thorough and surprisingly honest about the fact that blood tests don't always mean a lot and also that they are not particularly helpful in narrowing down what's wrong. Ironically, I'd asked if we could break down the LDH into its individual enzymes, because that tells the doc which organ is most likely suffering cell death, but she couldn't do it - it wasn't a test they could order.

When you think about it, that's insane. I'm being sent for a mammogram and a liver ultrasound just in case. Both of them could (probably) be avoided just by testing the LDH individually. It will be loads more tests and visits, which cannot POSSIBLY be cheaper than just checking which LDH is involved. If the test exists, and testing is so superior and helpful as a diagnostic, then why not let docs use the damn things?

FlipperTD
FlipperTD
in reply to Chancery

LDH isoenzymes can be of interest, but they've probably been overtaken by more modern [and easier to perform] tests that can be surrogates. Consider Ferritin versus Iron and transferrin. Much of the time they will indicate the same thing [more or less] but Ferritin is far less troublesome. Unless someone in a lab has a particular research interest, then unusual tests tend to 'go by the wayside'. A shame, but that's the way it is.

Everything's costed, but not at a 'whole patient' level. I'd better stop before I get onto my high horse!

Good luck. Listen to your doctor. It sounds like she's sensible.

Chancery
Chancery
in reply to FlipperTD

Oh, feel free to get on your high horse - I'm always interested in insiders' knowledge, plus, of course, I'm never off mine. I ride the poor thing to death with frustrated indignation when it comes to medicine!

FlipperTD
FlipperTD
in reply to Chancery

Diabetes control: HbA1c is a good test, but it doesn't reflect day-to-day control, as it's reflecting an average figure for the life of the red cells in circulation, and it's readily available in hospitals.

It has issues that need careful consideration in some circumstances, which is why we need an informed physician. For example, in haemolytic anaemias, where the red cell survival is shortened. [But at least the sample is stable.]

I believe that the finger prick blood sugar still works well for day-to-day monitoring, but that's where the diabetic nurse specialist is useful too.

Chancery
Chancery
in reply to FlipperTD

Diabetes didn't come up in discussion, actually. I assume because she doubted if I even have NAFLD as my liver function tests were all normal. I assume you'd show dysfunction in the liver with undiagnosed diabetes?

Another question you might be able to answer for me - would the common cold or a sore throat make LDH or ferritin rise? The latter (ferritin) would, I assume, since there is usually inflammation with a cold? But tissue damage seems unlikely so I'm thinking LDH wouldn't be elevated by cold infections. However, I also have an inflamed tooth currently due to a fractured filling. It had a temp filling put in but as you know the nerve can remain 'hot' and not settle, which is what I have. If the nerve is dying (it's hot and tender all the time) would that produce the tissue death needed to elevate LDH, do you think?

Short version! - colds, sore throat, flu might elevate ferritin?

Toothache (nerve death) might elevate LDH?

FlipperTD
FlipperTD
in reply to Chancery

Hi Chancery. I'm not qualified to advise on this.

Enzyme levels can be elevated in a wide variety of conditions; likewise with ferritin. That's one of the reasons that there are so many tests performed in a panel. However, the more tests we perform, the greater the likelihood of finding one outside the reference range. Then we start trying to find out what's going on. Reference ranges are typically 95% limits, so 5% of normals will be outside the range, whilst still being 'normal'. Do a hundred different tests on one healthy individual and you're very likely to find something at, or outside, those limits. And that is why we need informed and sensible doctors to look after us!

Good luck.

Chancery
Chancery
in reply to FlipperTD

Not a problem, Flipper - thanks! I'm beginning to suspect my original raised ferritin (348) which I had for over a year, IS my normal, and the further raises are due to me having one cold after another (with a sore throat) during the times it was tested (I hope). The elevated LDH though remains a mystery. Well, if nothing else at least the (probably unnecessary) tests will show I don't have breast cancer or liver disease!

How are your blood sugars, have they been stable?

Chancery
Chancery
in reply to Clarrisa

I don't know, Clarissa, they've never been tested. Perhaps the doc might want to do this when I see her tomorrow.

Clarrisa
Clarrisa
in reply to Chancery

I have been reading a recent post by Shaws on Thyroid UK entitled Your Body's many cries for water. He has also posted a link: natural science.org/wp-conte… It does have some interesting information in it & gave me the idea to ask about blood sugar. A "A1C" lab will give you a 3 month look back on how well you have been controlled. Now-a-days A1Cs can be checked by fingerstick & a reading produced in five minutes.

fbirder
fbirder
in reply to Clarrisa

The home kit for HbA1c is a little bit expensive at £264. amazon.co.uk/A1cNow-Monitor...

I'd prefer to send a sample off for testing. Just £39 forthwithlife.co.uk/hba1c/

Clarrisa
Clarrisa
in reply to fbirder

FYI: The local Costco Pharmacist area has been setting up test station tables & doing onsite checks yearly for free. Don’t know if Costco has invaded the U. K. yet.

Chancery
Chancery
in reply to Clarrisa

No Costco yet, Clarissa, but unfortunately I'm not in a (financial) position for private testing anyway!

helvella
helvella
in reply to Chancery

Yes - we do have Costco but... a) I have never been to one; b) I suspect they do not do everything the USA does.

Chancery
Chancery
in reply to helvella

Well knock me down with a feather - who knew? Not me, obviously. Apparently there's only 3 in Scotland, and they seem to be on weird industrial retail parks, which is probably why I've never seen one!

Clarrisa
Clarrisa
in reply to Chancery

FYI: In the states you do not have to have a Costco membership to use their pharmacy (at least in California that is the case). I doubt then that their pharmacy area would hold you to a membership should they also offer free annual A1C testing.

helvella
helvella
in reply to Clarrisa

That is a good point - which is somewhere in my memory but utterly unretrieved.

I have a feeling that is true across the USA.

Can you please post a copy of your blood results. Sometimes things get missed with results at the top or bottom ends of the ranges because they are “in range”.

What if any signs and symptoms do you have?

Chancery
Chancery
in reply to mauschen

Hi Mauschen. I'm not sure which results you mean? Both the ones I'm querying were elevated, out of range. The Ferritin was 615, I believe (or 656!) and the LDH was 279. The Ferritin was quite well over. As I said in the original post, this isn't a PA issue - I was just wondering if anyone knew a connection between these results. My symptoms are rashes, muscle pain & weakness, fatigue and breathlessness.

mauschen
mauschen
in reply to Chancery

Hi Chancery,

I meant that Ferritin and LDH tests are not usually done in isolation, usually a full blood count, liver enzymes and a thyroid panel might be investigated at the same time. In particular, I was wondering if CRP was checked?

Has anyone suggested a Rheumatologist referral?

Adult onset Still‘s disease might fit the picture but it’s very rare.

Why do you believe the elevated LDH is not P.A. related?

Here’s some information links:

mayoclinic.org/diseases-con...

mayoclinic.org/tests-proced...

labtestsonline.org/tests/la...

Chancery
Chancery
in reply to mauschen

Thanks, Mauschen. It's not likely to be PA because I don't have any kind of iron deficiency and my blood count was normal, as was my liver function tests. TSH wasn't tested this time around, but it is usually a little elevated, at around 5-6. It's been like that for years. I honestly cannot remember if they tested CRP - I'll need to check that. I actually did consider Adult Onset Still's Disease because it does fit; I had a few days where I was running a temperature and couldn't understand it (I suffer a lot with sudden overheating, especially at night, but it could just be hot flushes!) and I have had sore swollen lymph nodes, but also colds and a sore throat (which will NOT clear up, damn it), but I don't think it's quite the right fit, plus, as you say, it's very rare.

If these 'colds' don't clear up, or the lymph node thing persists, though, I will tell my doc, just in case.

mauschen
mauschen
in reply to Chancery

Ask for a full thyroid profile with T3 and T4 plus TPO &TG antibodies, perhaps Hashimoto?

Chancery
Chancery
in reply to mauschen

Thanks, Mauschen, but I've been down that road before to no avail. Mt thyroid stats aren't elevated enough for a doctor to take seriously. I can't be bothered fighting them for medication, or test, when I'm not sure it would make any noticeable difference anyway (I was on Levo briefly in 2014-15 but it didn't make me feel any different). And I doubt thyroid is to blame for rashes or even the muscle pain, although it possibly plays a part in my fatigue.

mauschen
mauschen
in reply to Chancery

Hi,

Levo didn’t make me feel better either but the addition of some T3 did.

I have multiple Autoimmune conditions including Hashimoto’s and PA and believe me, every muscle in my body aches and somedays I struggle to get my head from the pillow. Autoimmune disease is very debilitating and can cause rashes and fever, although hypothyroid patients often complain of being cold and having low body temperatures which makes diagnosing infections difficult as the temperature rises but sometimes not substantially to indicate infection.

Thankfully, you are going to see a Rheumatologist, I think you are heading in the right direction. I do hope you receive a diagnosis soon so that you can deal with it and move on.

Chancery
Chancery
in reply to mauschen

Thanks, Mauschen. I think it's very common to have joint and muscle problems with autoimmune conditions, likewise, fatigue. It seems to be universal to them all. Hardly surprising when you consider that the body is attacking itself and is in a constant state of siege. I got a appt today to have a mammogram (first one I've ever had at 63!) and I'm due an appt for a liver ultrasound, so liver disease and breast cancer will, hopefully, both be ruled out. Once I get my rheumatologist's appt I'll hopefully be able to start moving forwards.

mauschen
mauschen
in reply to Chancery

I will keep my fingers crossed for you that all is well with your scans. There is no point in saying don’t worry because I know you will. However, as you suggest, it’s a process of elimination and at least that will be good to know what it’s not.

Keep us posted

Take care

Marz
Marz
in reply to Chancery

TSH in healthy people is around 2 😥

Chancery
Chancery
in reply to Marz

Hi Marz, nice to hear from you. I read that recently (on here, I think), which means I have subclinical Hypothyroidism, but that's not news to me. I don't think though that it's responsible for the rashes and pain I'm having. I believe that might be another autoimmune issue (dermatomyositis). Waiting for a rheumatologist's appointment as we speak....

Marz
Marz
in reply to Chancery

Hope you soon find some answers - it's been a long haul for you ...

Chancery
Chancery
in reply to Marz

Hasn't half, Marz. Mind you, in all truthfulness, it's partly my fault as I get fed up with dr's visits and constant sickness-searching and just stop doing it for 6 months at a time. Not to mention my procrastinating when something does go wrong. If I just went to the doc's promptly, and persevered, I'd get on faster. But I SO hate being a 'professional sick person'. If this rheumatologist, when I finally see him/her, can't find anything I am seriously considering never pursuing anything again and just putting up with anything short of a heart attack, seizure, or sudden death.

mauschen
mauschen
in reply to Chancery

I hear your frustration lol! Can we have a me too campaign?

Seriously, it’s so frustrating sitting listening to someone spout forth utter rubbish when it’s so obvious they have no idea what they are talking about.

About 8 years ago, I had classic signs and symptoms of myxoedema but the doctors couldn’t find anything wrong until it almost killed me. They chose to ignore my knowledge and attempted to label me hypochondriac but I persevered until i was able to find a doctor capable of diagnosing me.

Chancery
Chancery
in reply to mauschen

Yes, Mauschen, at my last doc's appt she actually said to me "the skin round the eye is very fragile and it reacts to all sorts of thing", i.e. panda eye rashes since 2018 is 'just' eye irritation. If it was 'just' eye irritation then a simple cream and some care would resolve it, but it doesn't. The only thing that helps is hydrocortisone and then it only goes away for so long then comes right back. I've also had them on my collar bone and back of neck, my nipple (that one, like the eye rash is longstanding) and my belly button. I may possibly also be getting them on my vulva. Its the SAME rash, looks the same, feels the same, reacts the same, so how could it possibly be just eye irritation? And she was a good doctor, helpful, nice. God help us all.....

Marz
Marz
in reply to Chancery

Have you come across Hugh Hamiltons e-book on Amazon ? It covers ISTH well - Impaired Sensitivity to Thyroid Hormone. He is a member on TUK too. Apologies if I have highlighted this before ...

We returned to the UK last September - 4 days later I went down with horrid sinusitis that lasted almost a month. I have been unwell since 29th Dec with a coughing virus and have only left the house once - I am so weak. Thankfully hubby is more robust - even at 80 - and is recovering well and can take care of shopping and cooking ! Wow I am blessed.

I last had flu in 1958 when Asian Flu swept the country. So my point is about the weather and the sun we all so desperately need to keep us well. Also my gut micro-biome is Eastern Meditereanean ( confirmed by a sample sent to US for research ) - so my internal army is on standby as I await the creation of new troops to do battle 😥 We need the sun and good levels of VitD. Do you know your level ?

Chancery
Chancery
in reply to Marz

No, but I'll look that up, thanks, Marz. Have you come back to the UK for good??? I thought you were well-ensconced in your Greek (Corfu, Malta - my brain can't dredge it up) haven? Or was it just a holiday in the homeland? Don't tell me Brexit got you? In which case you won't be thanking our cold, wet, overcrowding for giving you a rotten cold.

If it's any comfort, I've had two, one right on top of the other, and this second one WILL not go away. It's driving me nuts. As soon as I lie down I bung up, despite taking phenylephrine, or whatever it's called (pretty sure not that!) to allegedly unblock my nose. It's been so sore for so long, along with my lymph nodes and throat, that I'm just permanently dehydrated and the inside of my nose is so sore I can't bear to blow it. I've lost so much blood from it I'm surprised I'm not anaemic.

P.S. I supplement my Vit D every winter since I learned some years ago I was deficient.

Marz
Marz
in reply to Chancery

Maybe worth having VitD re-checked. How much are you taking ?

Chancery
Chancery
in reply to Marz

I think 12.5mg? I was thinking it could probably stand being doubled up now, in the short daylight months.

Marz
Marz
in reply to Chancery

I think that works out at 500 iu's - which I am more familiar with. A VERY low dose. Not even a maintenance dose . 0.025 mg = 1 iu. Dosing should be according to your VitD test result - and your levels need to be around 100 plus. VitD is a steroidal pro-hormone and anti-inflammatory - so far more than a vitamin. Every cell in your body has a receptor for VitD so if levels are low ....The link below has a chart showing levels required to prevent many conditions including cancer. The creator is a breast cancer survivor and the site is supported by many research doctors.

grassrootshealth.net

When I moved to Crete in 2004 I tested insufficient and was taking 10.000 iu's to bring my levels up ! Yes even with all that sun. There are inexpensive postal testing kits available from City Assays Birmingham if your GP will not test.

vitamindcouncil.org

Important co-factors too - magnesium and VitK2-MK7.

Chancery
Chancery
in reply to Marz

Yes, I just calculated it online and it is 500iu. Thanks for the heads-up - when I get my next bloods taken I'm going to ask them to add it in. It will be really useful to know if the current low dose is keeping me topped up, or if it's falling short. It never occurred to me to have it checked to see if it's working - I just threw a pill at it!

P.S. Crete! Thanks for that - it's been really bugging me.

Marz
Marz
in reply to Chancery

Am afraid it could be undertreating you - something I read often on TUK. When were you last tested and what was the result ? Which brand are you taking ? - is it a gel capsule or a tablet ? When taking VitD the uptake of calcium from foods is improved so taking VitK2- MK7 directs calcium into bones and teeth and away from arteries ! Also magnesium is a co-factor. VitD is fat soluble and should be taken with a meal containing good fat 😥

There is a dosing chart in the link I posted above...

Chancery
Chancery
in reply to Marz

I was tested several years ago - I'd guess about 4? - and I was prescribed a supplement, but only because I asked for it. Although it was marked as deficient on my blood tests, my doc at the time ignored it. I remember it was deficient rather than way down the bottom, but it was only 20-something, I seem to recall. It was markedly low anyway. I got them on repeat for a while but then I moved house and changed docs and didn't renew it, I just bought my own.

I just buy a generic brand from Home Bargains, because they're cheap! I take them with magnesium with my evening meal, which always contains fat - yep, that's me. I read last night, and saw a short video, that they're weight dependent. As I've gained weight over the last couple of years (and then lost some again, but not yet at a weight I'd call optimum for health) I imagine my needs are higher now. Like I say, I'm going to double the dose and get it tested at my next bloods and see where I stand.

Marz
Marz
in reply to Chancery

It will be interesting to see your result ! Every area has it's own Guidelines regarding VitD treatment so could be worth looking it up in yours ..

Chancery
Chancery
in reply to Marz

Yep, on my to do list!

I have also had high ferritin results for several years, the medics have never shown any concern about it and only one GP tried testing for a cause, although well out of range apparently it has to be over 1000 before it's meaningful according to NHS standards. My highest level was over 500. The lab refused to test for Haemochromotosis because they said there were no familial links 🙄 not sure how they knew. I'm not diagnosed with any thyroid or PA issues although I have family links to both. The only link I can find on net searches is that it can be linked to thyroid issues and to being obese. I am very overweight so maybe that's it. I've seen a gastroenterologist but the tests he did didn't find anything either.

Chancery
Chancery
in reply to Espeegee

Yes, mine went up over 600, but like I think I mentioned somewhere up above, I had colds and an irritated tooth at the time (still do - neither wants to go away), so possibly they are responsible for the increase. My baseline might be around 348 (or 343 - 3,4 something!), because it appeared to be at that level for over a year. Apparently it rises as you age anyway, so at 63 there's a good chance that's just my normal baseline. And yes, obesity is a factor. I just sneak into the obese BMI category - oh goody - and I suspect that bad eating over Xmas might have played a role in the sudden spike too.

I never want to admit it to myself, but my body isn't a big fan of sugar and it always gets more achy and poorly when I'm eating it, which is much too often. I'm currently making changes to my diet and will be curious to see, when I have my Ferritin retested, if it's gone down any or stabilised back at the 343/8 figure.

And yes, they don't really worry about it till it goes over 1000, because that's when it's really abnormal and would indicate haemochromatosis. And, of course, that can actually start damaging your internal organs. If the rest of your iron tests, like transferrin and the saturation, are all normal it's very unlikely you have hemochromatosis, no matter how high the Ferritin is (if it's still under 1000)

Like I say, I suspect I play a part in these figures with bad eating habits, so it will be an interesting experiment to see if improved eating make a difference. I don't diet any more, but, by God, it's still hard giving up sugar.

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