B12 deficiency likely down to Ferritin - Pernicious Anaemi...

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B12 deficiency likely down to Ferritin

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I really hope this helps somebody.

I really don’t want to sound like I’m moaning. I am 54 years of age and have spent my life from about the age of 19 ( I started my period at 14 and 5 months) feeling tired forgetful and if I’m honest probably a little miserable, this manifested into feeling depressed as I grew older. Never understanding why I found it so difficult to lose weight. My memory and tiredness were literally a family and friends joke.

I’ve had thyroid tests numerous blood tests cardiology tests (due to 89 heart palpitations a day which was incredibly debilitating) i’ve been told there was nothing wrong with me all the blood test came back normal, cardiology said it was down to caffeine (I have to say that stopping caffeine did improve things but did not stop the palpitations) i’ve sat and cried in my doctors to the nurses literally begging them to help me because I felt so unwell all the time. Finally one nurse said have you ever been tested the B12 deficiency, I had not. She did the test and discovered I was deficient in B12, I had suffered Helicobacter pylori and I think they put it down to that having read my history . Things improved slightly but were still not right. I was still suffering many hypothyroidism symptoms and after providing a very long list of symptoms to my doctor they finally agreed to send me to an endocrinologist. All he did was read my history and within two minutes of my being in his office said what Iron tablets do you take? At the time I Of my own volition I took a Liquid iron supplement called spartone. He proceeded to look it up on his computer and said to me, you have virtually no iron in your body you need to take at least five of those a day until we give you an iron infusion. He then went on to explain that my low ferritin had (in all likelihood) caused all the hypothyroidism symptoms I had been experiencing. This entire business was down to the fact that I suffered and have always suffered incredibly heavy bleeding during my periods. An issue that I have alerted my doctors to for 30+ years. Now my iron levels are improving I no longer suffer any palpitations (well occasionally but only lasting seconds) I have not gone through the change but bringing My ferritin levels up have literally improved my life. I’ve started to grow hairs on my legs, I’ve started to get spots in my hair on my head which I assume is my hair follicles springing back into life (albeit that it’s likely to be grey at this age) I now look forward to strong nails instead of constantly brittle ones, improving hair, A lot less fatigue and so many other improvements, some of which I already feel. I’ve asked the doctor to test my B12 levels when he tests for the ferritin levels as having read stuff I now believe that my B12 deficiency is literally down to the loss of blood I suffered during my period and consequently the low ferritin. I’ve been told ferritin is not a usual part of a routine blood test. I would recommend anybody suffering fatigue amongst other symptoms relating to both B12 deficiency and Hypothyroidism ask to have their ferritin tested, particularly if you are a woman and suffer during your period as I have.

Onward and upward I am looking forward to a clear headed, fatigue free, hairy life. Please get your ferritin checked.

And one final thing I no longer feel depressed, I have a much more positive outlook. I can’t imagine how much money has been wasted on antidepressants by the NHS purely down to the lack of blood testing for low ferritin and all its effects!!

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10 Replies
Nackapan profile image
Nackapan

I'm really pleased for you. I requested my ferriton levels tof be checked as you say not done automatically. I know anything below 50 causes fatigue and and other tings. Optimum is 7o. One of my daughters hair was actually falling out at such a rate she got a bald patch. All sorted by getting her ferritin leveks uo. She also got very out of breath and had probkrms on her calves. Mine are stuck at 3our so am taking iron as instructed by Gp and having a blood test in 3 month. Before b12 defiency the level was at least 65-71. As with other 'normal ranges ferritin is set too low and the range is wide.

Gambit62 profile image
Gambit62Administrator

ferritin is a protein that binds to iron to allow your body to use it. As such it is a fairly good marker of iron status.

B12 is a totally unrelated vitamin.

Iron deficiency does not cause B12 deficiency and vice-versa.

An absorption problem that affects B12 may also affect other vitamins and minerals - including folate and iron, leading to deficiencies in the vitamin or mineral affected, ie the cause of a B12 deficiency can also result in an iron deficiency.

There are a large number of conditions that have very similar symptoms - including hyperthyroidism, B12 deficiency, iron deficiency and diabetes so a general investigation starts by looking at a large number of markers and to see what those throw up. My experience has been that ferritin generally seems to be a part of this.

Heavy periods can actually be a symptom of low iron.

Foggyme profile image
FoggymeAdministrator

Hi Jillywilly.

Low levels of ferritin can be caused by absorption problems or heavy blood loss...and low levels leads to iron deficiency anemia... clearly what you were suffering from.

The symptoms of iron deficiency anaemia, hypothyroidism, and B12 deficiency are remarkably similar and it's often very difficult to determine which condition is causing what symptoms (as you found for all those years).

Low ferritin levels / iron deficiency anaemia do not cause B12 deficiency...in your case, this is likely caused by heliorbactor pylori infection (as the nurse identified)....though there can be other mechanism at play too (absorption problems etc.).

I'm assuming that your heliobator infection was treated and B12 deficiency addressed (usually with injections - although injections are not usually needed long-term once the infection has been eradicated and B12 status rectified). Just worth mentioning that if iron deficiency is eradicated and you still have symptoms, worth keeping an eye on B12 deficiency as a potential continuing problem, as it's possible to have two causal mechanisms simultaneously (HP and absorption issues). If you have had B12 injections, then monitoring B12 levels is meaningless in terms of monitoring potential deficiency, since 'normal' levels no longer apply. So...if symptoms persist or return and ferritin levels are normal...continue to think B12 deficiency, and treat.

Also worth noting that heliobator pylori can be a persistent little devil. Two weeks after finishing antibiotics it's usual to re-test for HP to make sure that treatment was successful (GP can do a breath test). I had to have two consecutive course of antibiotics to get rid of the beast. Also - can return in susceptible individuals (four times for me, so far).

Really pleased that your endocrinologist was on the ball and picked up on the very very low ferritin...though goodness only knows how your GP missed this for so long (ferritin is a first line standard test for anyone who has symptoms like yours, complains of tiredness, and has a history of excessive bleeding). So, nothing 'extra special' or extraordinary about ferritin tests...absolutely should have been the very first thing he tested. So hmm...

So...low ferritin levels do not cause B12 deficiency...though those who have B12 deficiency often have low ferritin levels and thus suffer from iron deficiency anaemia (because of the absorption problems thet can be associated with pernicious anaemia etc.).

So....onwards and upwards for you...and hurrah for that 😉😀.

Iesgobdafydd profile image
Iesgobdafydd in reply toFoggyme

Foggyme, when you say ferritin is a first line standard test for someone with symptoms like hers, which symptoms are you referring to? I'm curious because I went to my GPs in 2009 complaining of heavy bleeding and I think probably low energy, it's hard to remember now but I certainly wouldn't have gone for the heavy bleeding alone. They tested and found low B12 at that time, alongside unusually high red blood cell folate, but it doesn't look like I ever had a ferritin test done till 2016, by which time things had got a lot worse and I had IBS as well as chronic fatigue. However I never had palpitations or depression like Jilly reports, and I didn't have Helicobacter pylori (they tested for that in 2014).

Foggyme profile image
FoggymeAdministrator in reply toIesgobdafydd

It’s would be usual to test ferritin levels in anyone who had symptoms of iron deficiency anaemia. Symptoms could include weakness, tiredness, lack of energy, dizziness, pins and needles, shortness of breath, pale colour, palpitations...etc. (Note: not all these symptoms have to be present to have low ferritin and iron deficiency anaemia).

In the presence of the symptoms above and a history of heavy bleeding - iron deficiency anaemia would be the first suspicion - and ferritin plus full blood count would be expected tests (ideally with full iron panel too).

Even without obvious bleeding it would be usual to run those tests - since iron deficiency anaemia is one obvious cause for those kind symptoms.

👍

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Iesgobdafydd profile image
Iesgobdafydd in reply toFoggyme

Thanks. No idea why they didn't give me that one then, unless the record I've seen isn't complete, but I can't think why they'd leave it out. Possibly they were having systemic problems of some kind around then, as if I remember correctly the low B12 was not picked up by the first doctor who saw my results and it wasn't till I went back again and saw another one that it was spotted. I doubt its not being done made any difference in my case anyhow.

in reply toFoggyme

PS I should have said that I was non anaemic iron deficient.

Gumball77 profile image
Gumball77

Oh my God! Reading this is so similar to what I experience. Heavy periods and always low iron when tested...plus PA

JAMV profile image
JAMV

Did your b12 go back to normal range once iron was in normal range?

Hi I have to keep a check on my iron levels and take regular tablets. It’s still not as good as it should be. But I do feel better. B12 is also something I use on a regular basis. I’ve been refused injections by my doctor and told to get over the counter supplements. I am taking a sublingual liquid, which I think is working as some of the symptoms I had started to experience again have improved. On the whole I feel better all round. But it’s something I have to work at.

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