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Pernicious Anaemia Society

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Help needed please

Lizbeth1986 profile image
9 Replies

Just joined, I had to leave 2 jobs due to underperformance caused by tiredness, brain fog, poor memory/attention/concentration and also muscle weakness and poor stamina. It has been said I am suffering from a mini nervous breakdown/stress/major depression, family have been worried about me looking unwell. Previous GP sent me away with a leaflet about receiving mental health support and told me result for folate only minimal. New GP rechecking me for ferritin, folate, vitamin B12, vitamin D, iron panel, complete blood count, TSH, free hormones and TPO (I also have Hashimoto's) does anything else regarding B12 deficiency/pernicious anaemia need adding please?

Any advice about results would be appreciated.

Serum ferritin - 13 ug/L (15 - 150)

Serum folate - 3.6 ug/L (4.6 - 18.7)

Serum vitamin B12 - 188 pg/L (180 - 900)

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Lizbeth1986 profile image
Lizbeth1986
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9 Replies
pvanderaa profile image
pvanderaa

Start a logbook of all your symptoms especially the neurological and psychological ones and assess a daily severity score (your own scale is fine). Your GP needs to have evidence but also needs to get past treating you like a hypochondriac.

Provide the list of symptoms and scores to your GP each visit. Discuss your plan and ask for his feedback since neurological damage can be so severe. Stay calm and don't let the GP dismiss you.

Some labs here in the USA add a caveat to B12 results that 10% of the population exhibits neurological symptoms when B12 levels are under 400 pg/ml (ng/L).

You need B12 injections and up to 5 mg folic acid to supplement the B12 along with a daily multivitamin. But you need to get the B12 injections sorted first.

Supplementing can skew test results and delay the prescription of the B12 injections.

Gambit62 profile image
Gambit62Administrator

Folate deficient

Serum B12 likely to be deficient - need to look at symptoms - MMA test may help though personally think should be unnecessary if you are highly symptomatic.

ferritin is a protein that binds to iron so low ferritin is an indicator that your iron levels are low.

Low iron will tend towards microcytosis (small red blood cells) and counteract tendency of folate and serum B12 deficiency to cause macrocytosis (large red blood cells.

Note: about 30% of people with a B12 deficiency present with neurological/neuropsychiatric problems before anything shows up in blood tests.

Hope your GP is a good one and recognises that clinical evaluation is needed for diagnosis - and that test results need to be interpreted in the context of clinical presentation and each of the above results actually needs to be evaluated in the context of other test results - eg full blood count.

You could ask for IFA but that is prone to false negatives about 50% of time so a negative result certainly doesn't rule out PA - really what is needed is a confirmation that any deficiencies aren't dietary by looking at level of iron, B12 etc in your diet - though having so many going on implies that there genuinely is an absorption problem ... and treatment for B12 deficiency is same where deficiency is caused by an absorption problem.

Thyroid may cloud things a bit because of overlap of symptoms.

Folate deficiency should not be treated in isolation if there is a possible B12 deficiency as this can result in permanent neurological damage ... and preference would be to treat the B12 deficiency first - by about 24-48 hours - then start folate treatment.

Hillwoman profile image
Hillwoman

I would also ask for TG abs, plus FT4 and FT3, though you'll be lucky to get the FT3 on the NHS. However, it's the most important test for thyroid status, so you might consider getting it done privately through one of the labs recommended on the HU-TUK forum. The Blue Horizon lab is used by many and seems to be good value.

Hidihi profile image
Hidihi in reply to Hillwoman

Hi Hillwoman. wonder if you could comment on this one. I ahd low T3 and my GP upped my thyroxine by 0.25 micrgrams. I then swung the other way i.e. a high T4. Could you say (if you know) what the most appropriate treatment for a low T3? My friend (a young pressured PhD student) has just shown up with a low T3. She's exhausted all the time. they commenced her on the ordinary thyroxine with no increase in energy?

Hillwoman profile image
Hillwoman in reply to Hidihi

It's quite hard to guess what's going on without knowing more, so I'd recommend posting your questions with all relevant results and lab ranges on the HU-TUK forum. You'll receive comprehensive advice there.

With the information you've given, it looks as if you're not converting T4 to T3 efficiently. There are various reasons for poor conversion, including nutritional deficiencies. As for your friend, the same caveat applies, but if she's only on a standard starting dose of 50 mcg thyroxine, she may still have a long way to go to achieve optimal levels of hormone. I would hope she is being monitored by her GP, with tests and increases in thyroxine at appropriate intervals.

pugdogs10 profile image
pugdogs10

I would certainly agree with Hillwoman. Like you I also have Hashi as well as PA.... I do know that my folate and ferritin need to be at least half way up the range for me to feel well...yours are both below the bottom of the range. Doctors do not seem to recognise these things but they are more important than you might think.

Hidihi profile image
Hidihi in reply to pugdogs10

Sadly Doctors look at the very wide range of blood results i.e. if u fall in the low/bottom range, they consider it OK. This is not good practice coz your body may well have been used to a high level of all these markers and have fallen to a ''normal'' low which the body cannot run on? They need to know what one's normal level is respond to the individual changes, but it's so difficult with UK GP's generally speaking. having said that I have a excellent GP over the last year.

pugdogs10 profile image
pugdogs10

I do hope then that your GP is treating your low levels of ferritin and folate... people with low B12 and thyroid issues really need this. If not you might like to consider supplementing. Best wishes.

Hidihi profile image
Hidihi in reply to pugdogs10

Hillwoman & pugdogs: thank u both for that. I think I need a full blood count doing. My Ferritin levels are always low as is my Hb.

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