Pernicious Anaemia Society
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Have I got it all wrong!

I've been experiencing the typical symptoms of B12/folate deficiencies for over 18 months now, the fatigue, fast heartbeat, dizziness, vertigo, fainting, tinnitus, pins and needles, vibrating body, brain fog etc... to the point when I am gradually unable to carry on with normal life, but as usual, this has been put down to the perimenopause/stress etc... I was referred to an ENT who diagnosed an ear imbalance with symptoms again put down to stress.

My symptoms have got progressively worse but was told that my latest blood results showed no deficiency in B21/folate. However, looking more into it, It came back with a very high marker for MCH, but my GP dismissed its significance (unfortunately, didn't ask the actual result but he did agree that it was very high). This has however prompted me to do some research and what I have read everywhere is that this is an indication of macrotic anemia, the cause of which is more commonly B21/folate deficiency but my GP says that this is not an indication of macrotic anemia. I am so confused. I read the bjh guidelines, and my understanding is that the B12 test alone is not fully reliable and that my levels of MCH and symptoms should warrant my starting on B12 injections and even a referral to a Haemotalogist. My GP has only agree to me having an injection once a month (to keep my quiet I think).

Am I getting all confused in thinkin that the high MCH results along with my on-going symptoms should at least prompt further investigation? I like my GP, I hate being in a position to question his competences, but everything I read (bjh guidelines, summary on this website, NICE guidance seem to indicate a different position to his. I've read how many patients struggle for many months to get a proper diagnosis. I really don't know what to do now. Any advice Thanks

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A high MCH (mean cell haemaglobin) is indiciative of macrocytic anaemia in combination of a high MCV (mean cell volume).

Macrocytic means 'large cells'. The body cannot produce enough DNA to make all the red cells it needs. So it makes fewer, larger, ones. As these larger cells still have the normal amount of haemaglobin they have more haemaglobin than normal, smaller, cells. Hence high MCH and hig MCV.

High MCH with normal MCV can be caused by: several other forms of anemia, thyroid dysfunction, chemotherapy, certain infections, over use of estrogen-containing medications, some forms of leukemia and hereditary spherocytosis; a condition that causes a shortage of red blood cells.

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Hi Dizzinessloaded

Symptoms of B12 deficiency tend to develop slowly and may not be recognised immediately. As the condition worsens, common symptoms include:

Weakness and fatigue

Light-headedness and dizziness

Palpitations and rapid heartbeat

Shortness of breath

A sore tongue that has a red, beefy appearance

Nausea or poor appetite

Weight loss

Diarrhoea

Yellowish tinge to the skin and eyes

If low levels of B12 remain for a long time, the condition also can lead to irreversible damage to nerve cells, which can cause the following symptoms:

Numbness and tingling in the hands and feet

Difficulty walking

Muscle weakness

Irritability

Memory loss

Dementia

Depression

Psychosis

Your doctor should be treating your symptoms not just looking at the computer screen.

The British Society for Haematology guidelines say on the Diagnosis of B12 and Folate Deficiency "In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment".

google.co.uk/url?sa=t&rct=j...

Make a list of your symptoms and present this to your doctor and ask him to treat you according to your symptoms and (perhaps) even start you on loading doses "until there is no further improvement" according to the N.I.C.E guidelines below. Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"

google.co.uk/url?sa=t&rct=j...

It is also important that your Folate level is monitored as this is essential to process the B12.

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.

As you say high MCH scores are commonly a sign of macrocytic anemia. This condition occurs when the blood cells are too big, which can be a result of not having enough vitamin B12 or folic acid in the body.

If possible take someone with you who can validate your neurological symptoms as the doctor is less likely to pooh pooh you in front of a witness.

I am not saying that this is an easy thing to do but try to stay calm, write out what you want to say and keep to the script and be confident that you are "in the right" and your facts are correct.

I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years.

I wish you well

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Do you have the results of your vitamin and blood work? If you could put the values and the given ranges here then we may have a better idea of what is going on.

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Thank you very much for your prompt response. Unfortunately, I don't have the print out of the blood work so will be asking for this. Can I ask the receptionist to do or does it have to be the GP (who I think is starting to have enough of me!).

Unfortunately, I have already gone with my husband and I did ask then if VitB12 could explain my symptoms, which he said was unlikely, but agreed to the blood test then. I have been mentioning my symptoms for over a year, and very specifically this last time when again I asked about VitB12 deficiency. I even mentioned the NICE and bjh guidelines, and in the end, he said that according to the bnf, he couldn't prescribe more than 1 injection a month from the start and that any more than that would be unlicenced treatment.

fbirder, are you saying that a high MCH but normal MCV would not indicate macrotic anemia or just that there could be other reasons and that alone, it should prompt further investigation?

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Hi Dizzinessloaded

You are 'entitled' to a copy of any test results and, yes, if you ask at reception, they will likely print them out. However, some surgeries charge (? for the paper, ink and their time :( )

All surgeries are supposed to offer online access, ie to make/cancel appts, order repeat prescriptions and, with extra authority from you, test results. So, if you don't already have this access, it could be worth you asking about it. I can see my test results once the GP has OK'd them and I can print them off at home before seeing the GP. Very handy, especially if you want to check something out beforehand!!! ;)

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I went thru some of these symptoms myself. I tried methylcobalamin injectable which I found online much cheaper and it worked wonders for me. Try VitaminQuick.com

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Thank you JMN2017. I do have online access, can make appointments and see my prescriptions, but not blood test results. I'm going to book the one injection the GP agreed to and will ask the nurse to print.

Frankfromthewest, I decided to take the bull by the horn and ordered some online yesterday and will follow the NICE/bjh recommendations. It cannot do any harm, so it's frustrating that my GP wouldn't agree to it. At best it will help me after 18 months of feeling unwell, at worse at least we will know it's not that and can explore other avenues, so surely win-win decision.

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Dizzinessloaded Just a little warning, if you're going to need further testing, having any B12 will skew the results. This happened to me - my GP wasn't listening, so I began sublinguals, but then the letter I'd already sent her persuaded her to consult a haematologist who agreed that I should have further tests (MMA and HoloTC). Unfortunately I'd made this pointless. Luckily, they agreed to a therapeutic trial of injections, but it would have been better to have testing first and have a better idea of what is going on!

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Maybe a good idea to rule out low thyroid which can also share the symptoms of Low B12. Have you been tested correctly ? 😊

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Thanks everyone. My health has gone down in the last few days. I am shaking all over, and almost fainted this morning, again and feeling utterly shattered despite sleeping normal hours. My resting heart rate is 52, but it goes to over 120 just walking around at home.

I'm seeing the nurse tomorrow for my one injection, so will ask for blood results on papers, but I know something is definitely wrong. Marz, I had my thyroid tested last year as suspected suffering from hyper rather than hypo in the past (heart rate, loosing weight, shaking), but by the time I saw the GP and got an appointment for blood, the symptoms were gone. The results came back within range except for the antibodies which was quite high. I read at the time that this could indicate a problem with thyroid, but not enough for doctors to consider it. I believe the latest results were normal.

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Hi - have only just spotted your reply 😊 If you have your Thyroid results with ranges I may be able to make some suggestions. Anti-bodies - which ones were tested ? You are legally entitled to have copies of all results and as from today - at no charge !

If you have Hashimotos then you may well suffer both HypO & HypER symptoms. It is auto-immune.

Tests - TSH - FT4 - FT3 & Anti-TPO & Anti- Tg.

Happy to help 😊

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Get all your results for thyroid as well, and ask Marz to take a look at them. Some things can be in range but there could be a downward/upward trend there that I'm sure she could interpret for you.

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😊😊 Thanks for the alert. Hope you are OK ....

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Currently at work, Marz, one day a week. At the moment it's still work 8 hrs, sleep 16, but other things seem to be improving gradually. Physical work not so exhausting, it's having to think/ concentrate/ understand/ focus though all the noise and distraction that tires me out still. Getting there slowly, and aiming for 1/2 week at the start of academic year.

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Let's hope that soon the hours of sleep and being awake are reversed. Noise is horrid and disrupts messages going in and out of the brain I find - even more than one conversation has me struggling..... siga siga - slowly slowly 😊

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.......Just about done here, and next week's half-term!

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