Mystery fatigue - anaemia: In July... - Pernicious Anaemi...

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Mystery fatigue - anaemia

Taviterry profile image
9 Replies

In July 2023, I had a new tissue heart valve and had an excellent recovery for seven weeks, before becoming fatigued. My heart surgeon said all was good with the valve and referred me to a gastroenterologist who could find "no reason", and said it was a matter for a haematologist, who's just written (a year after I was referred to her)!to say that she was unsure as to why I am so tired, but she didn't think it was a haematological matter. She lauded the fact that my haemoglobin at 134 (reference range 130-180) was "very good"(??).

My haptoglobin has been under 0.08 (reference range 0.4-2.68) all year; following an iron infusion my ferritin is 564 (reference range 30-400); and my lactose dehydrogenase is 438 (reference range 125-220). Other blood levels are OK, a few are borderline.)

Having been active in the Cardiology part of this forum for a year, I'm aware of the restrictions on expressing medical opinions about individual circumstances, and all I seek, please, are comments about to what extent the readings above could explain fatigue.

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Taviterry
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9 Replies
Nackapan profile image
Nackapan

Although this forum is about Pernicious Anaemia

It's an autoimmune condition .

It causes B12 deficiency.

Sometimes megobolastic anaemia is present .

Have you had your B12 levels checked ?

Low B12 can be caused by low stomach acid which csn happen as we age .

No Intrinsic factor needed to process it.

Medications

A long list of other things

Low iron

VitD

Ferritin

Folate

Often accompany Low B12 .

Amongst other symptoms.

Crippling fatigue features .

Hope this helps

I can see your concern with iron

Taviterry profile image
Taviterry in reply toNackapan

Thanks for your quick reply. This part of Health Unlocked was the least inappropriate in which to post, and other anaemia forums didn't look very promising. This year my B12 has varied between 418 and 517 (range 200-900). Vitamin D was low, but is now 100 (range 5- 200). Iron was 11 on March 5, on October 4 it was 19 (12-31). Bilirubin usually 16 or 17, though peaked at 26, now 17 again (0-20). Low folate has been suggested as a reason but mine is 14.30 (3-20.5). Clopidogrel anti-coagulant has also been suggested as a cause.

Nackapan profile image
Nackapan in reply toTaviterry

Others may know more about your blood results .Just get getting what tests you csn to rule things out .

Also referrals to appropriate specialists.

I wish you well

Tanitha profile image
Tanitha

I wonder if nitrous oxide could have been used during your surgery? It is known to deplete b12. You say your b12 level has varied between 418 and 517 - is it falling? You could trial supplementing at recommended dose to see if any improvement, something without additives like Nature Provides Liquid Vitamin B12.

MrsTuft profile image
MrsTuft

High ferritin can give you similar symptoms to low ferritin, including fatigue. If they used nitrous oxide during your surgery then it oxidises / deactivates all the B12 in your body and you’ll need injections - you’d have to ask the anaesthetist. Your haemoglobin is rock bottom of normal which may not be normal for you and it’s certainly not optimal. Could you have had Covid which can give long fatigue? It’s hard to get to the bottom of, but keep digging. And maybe try a different haematologist. Keep an eye on B12, folate, iron, ferritin, FBC, thyroid, testosterone, etc. Also think laterally - could the stress of surgery have triggered something like coeliac disease - it’s not unheard of if the genetic predisposition is there. Best of luck.

Sleepybunny profile image
Sleepybunny

Hi,

Welcome to the forum.

Are your symptoms suggestive of B12 deficiency?

B12 deficiency symptoms

pernicious-anaemia-society....

b12info.com/signs-and-sympt...

If yes, you might want to look into functional B12 deficiency.

This is where there is plenty of B12 in the blood but it's not getting to where it's needed in the cells so person develops deficiency symptoms.

MMA, Homocysteine and Active B12 (holotranscobalamin) tests may help to diagnose functional B12 deficiency.

Blog post about being symptomatic for B12 deficiency with normal range serum B12.

b12info.com/your-serum-b12-...

It's quite common on this forum for people to also have folate, iron and Vitamin D deficiencies.

Also common for people here to have thyroid issues which can cause fatigue.

Have you had recent thyroid tests?

Thyroid UK is an active, supportive forum on HU.

LDH

I've read that LDH can be raised after damage to body tissue.

It can also be raised in Pernicious Anaemia (an auto immune condition that can lead to B12 deficiency)

Lab Tests Online UK - LDH test

labtestsonline.org.uk/tests...

Lab tests Online - Bilirubin tests

labtestsonline.org.uk/tests...

Pernicious Anaemia Society

pernicious-anaemia-society....

I left detailed info in thread below.

Help Needed! Have I got Pernicious Anaemia?

healthunlocked.com/pasoc/po...

I'm not medically trained.

Jillymo profile image
Jillymo

Hi Tavyterry,

I am pleased to hear your surgery went well.

It is still early days of recovery, heart patients often report feeling fatigued. With regard to the haematologist taking a year to reply I can understand your frustration. Then having said that everything seem's to be long winded these days what with secretaries still working from home and consultants doing less hours to spend more time attending their private patients.

My haematologist was useless when it came to my B12 deficiency and admitted she new little about the condition which took me by surprise ! I thought with her being a top lead consultant she would have been able to assist me. How wrong was I ?

I am on also on Clopidogrel for a heart condition but also on Aspirin. My blood results show I have a vast reduction in white blood cells !

I am not prudent when it comes to reading results, I will leave that to other's to comment on albeit there are a couple of levels you have reported that 'could be' of concern.

What tests did the Gastrologist carry out to rule out the possibility of an absorbtion issue ? I underwent both an Endoscopy and a Colonoscopy and now wait a Capsule Swallow to conclude results. I was informed a 4 month wait for the proceedure to be carried out, it's now been 10 months and I have not heard a damned word ! Do you have any issues such as reflux, gastritis ect ? I am prescribed Lansoprazole which can affect B12 absorbtion !

The latter might be of interest to you...........

Vitamin D is not the only vitamin that can be affected by Lyme disease, or that you may need more of to help fight tick-borne illness. Many Lyme patients have a vitamin B12 deficiency. Others have anemia or low ferretin.

Taviterry profile image
Taviterry in reply toJillymo

Thanks for the further replies, especially the links. Back in 2017 my B12 was 330, then 331 last November when I first sought help for fatigue, then 418, 517 and most recently 474. I spent £1000 on a private gasterentologist which included £550 for blood tests - no internal examinations. My surgeon insisted there was no need for me to take Lansoprazole, my GP urged that I should and issued a prescription; I take it only occasionally when my stomach is a little bit unhappy.

I've had several thyroid tests, with the results being within range.

A Polish friend put me in touch with a compatriot who'd returned home after being an NHS haematologist. Just £75 for an on-line consultation, which concluded with his suggesting I should be checked for Non-Alcoholic Fatty Liver Disease because of the high ferritin, despite my saying that I'd had a reassuring CT liver scan in May 2023 and two other blood results (that are more indicative) being constantly median; my GP immediately ruled out NAFLD.

An Ukrainian friend passed my details onto a friend who is a private cardiologist in England and who normally charges £200 an hour for a consultation. Lana asked that her friend look at them for free, and last night received comments - in Russian - which she'll translate and forward to me.

I'm also about to contact a haematologist who works at a private hospital three miles from me. Hopefully he'll be satisfied with my NHS bloods results!

I've described my symptoms to a dozen health professionals who, curiously, have never once asked me if I'd had Covid. I haven't.

Sea-blue profile image
Sea-blue

Hi your post reminded me of my experience. In 2020 I had open heart surgery , two valves replaced and other stuff( congenital heart disease ) which I won’t bore you with now. I experienced severe fatigue after about two months . I’d had surgery when 35 and had recovered well . This time I was 58. My B12 plummeted . Later discovered I had indeed PA ( Pernicious Anaemia). Generally you have a blood transfusion after being on a heart bypass machine and iron anaemia is very common after any open heart surgery.

I asked my cardiology team whether nitrous oxide would have been used ( anaesthesia for my op) The answer a definite no , not for OHS these days , never . So I doubt that’s the cause of your fatigue. I’m on Apixaban ( blood thinner ) so my white blood cells are not great. My cardiology team were brilliant at saving my life and doing complex cardiac surgery but not so good at having a holistic approach to my aftercare. I was on Lansoprazole after surgery , aspirin dictated that. That stops you absorbing nutrients . Glad I’m not on it anymore.

Malabsorption issues with the stomach can cause deficiencies with B12, folate , iron , vit D. All of these will have a big effect on your recovery etc.

I followed a B12 protocol and my health has improved hugely. Looking back at your replies your B12 isn’t really high. I’m not giving medical advice here just an observation.. Topping up your B12 and folate , vit D etc following advice on here wouldn’t harm . I take a B complex with low B6 for four months , then two off, etc, had my vit D tested , it was deficient , . I take Solgar gentle iron on and off . Vit D now in the winter months after getting it to optimal levels. I’m afraid I had to advocate for myself in the end and I Self administer B12 as I don’t get enough from the NHS.

Look at you blood test results again and the ranges . See if you could do with a top up so to speak anywhere.Good luck

I

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