One of the forum members on the gluten free gorillas site suggested that I approach you to ask for some info on my son's blood test results.
He is 20 years old and has just been diagnosed with Coeliac disease, he has been quite ill for about 21/2 years and until quite recently he had been told that his problems were all down to IBS, depression and anxiety and consequently had been prescribed anti depressants.
His current doctor recently did some blood tests and I just need a bit of advice regarding his results.
Ferritin 70ug/L range ( 20-300)
Vit B12 386ng/l range ( 180- 2000)
folate 3.4 ug/L range (2.8- 20)
I feel that although these are in range they are way too low, he is away at University for the next few weeks and I could do with someone pointing me in the right direction regarding what he needs to request to boost his levels, I have sent him a good multivitamin/ mineral but I am not sure whether he should ask for B12 injections or mega doses of anything.
His GP has said that he will test his Vit D as this too may be low.
Additionally I think his thyroid is struggling so I have suggested that he gets his antibodies checked if they will test them.
TSH 3.1 range 0.2- 4.5
FT4 13 range 9-21
Thanks in advance.
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knitwitty
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It would have been quite useful if his doctor had ordered a FBC as some of the more relevant information to assess B12/folate deficiency and/or an under active thyroid is missing. I am new to PA but folate/ferritin levels look low to me. Someone more knowledgeable will be along to give you a better account. I would say, however, that I was B12 deficient with a B12 level of 385 (ish) and folate around 5.5 but I did have MCV over the top of the reference range and loads of symptoms.
TSH could be a bit lower (around 1 ish) and T4 ideally ought to be in the top third of the reference range, but the thing the NHS never test as a matter of course is T3 which is the active form of thyroid hormone.
Hi Cassie, thanks for your reply , I know that it's an uphill struggle trying to get the NHS to test the appropriate things and even harder getting them to act on things that are in range but not optimal.
His current doctor does seem to be much better than the one he had when he was at home, as they kept dismissing his problems as being IBS related and put everything down to anxiety and depression.
I think the anxiety and depression have come about because of the awful symptoms he has had due to his coeliac disease.
He has spent most of this year at Uni in his flat being unable to leave because he has been so unwell, we are hoping that he has now turned a corner and will start to get better which is why I am so keen to make sure he gets all the help he needs.
Hi Knitwitty. Hello and welcome. I'm so,sorry that your son is having such problems...and all here know only too well how difficult it is to get doctors to respond appropriately to,concerns about potential B12 deficiency.
The first thing to say is...your son has IBS, and this can cause absorption problems with vitamin B12 (and other vitamins to).
The second thing is that your sons' serum B12 level is in what's called the 'grey' area...although it within range, it's low enough to cause the symptoms of vitamin B12 deficiency. And it's still,possible to have vitamin B12 deficiency even with higher levels of B12
The serum B12 test is a blind instrument for assessing B12 deficency and all the guidelines say: treat the symptoms, not the serum B12 levels.
Note: if the supplements you have sent to,your son contain vitamin B12 (and they most likely do) it would be a good idea not to take them before all GP investigations have been complete (and he does likely need more - as below). Taking B12 now will likely raise his B12 levels without giving enough to effective therapeutic purposes, and he may then struggle even further to get a diagnosis of B12 deficiency - supplementation is therefore not recommended before all GP investigations have been completed. 😉😉
i'm sorry, I don't have the time for a long post right now, so I'm going to include some links below that will give you lots of information about B12 deficency, the guidelines for diagnosis and treatment (even when levels are within limits), and some myth busting information (since many doctors don't really understand B12 deficency).
And your right, your sons folate level is too low: B12 and folate work together so if levels are deficent or low the body cannot utilise B12 properly.
A note of caution: folate should not be given when B12 is low unless the low B12 is addressed first - folate should start 24 - 48 hours after B12 injections have commenced. Folate supplements should carry is warning. It's because there have been rare (very rare) cases when giving folate without addressing low B12 has resulted in neurological damage. Also - treating low folate without treating low or deficent B12 can 'mask' an emerging B12 deficency and allow neurological damage to occur.
As your son's potential B12 issue is most likely caused by an absorption problems (because of the IBS/Coeliac disease), then he should be treated with B12 injections, not B12 tablets (he won't absorb enough B12 from tablets).
If he has neurological symptoms, he should again, be treated by injections - a more intensive regime that most GP's know about (after the six loading doses, he should have 1mg hydroxocobalamin every other day until no further improvement.
Evidence to back-up the above is included in the links below - looks like a lot of reading but most are only one page long - in particular, look at the UKNEQAS B12 Treatment Alert (if he has Neuro symptoms - instructs GP's to start B12 treatment immediately, even if levels are within normal limits). Good idea to print off, highlight things relevant to,your sons case, and take along as evidence to,present to a GP in support of request for treatment for B12 deficiency.
Also - coeliac disease is an autoimmune condition - these tend to come in clusters so your son may well have or be developing Pernicious Anaemia (another autoimmune condition - which causes B12 deficiency).
Tests to ask your GP for to provide further clarification: anti-IF antibodies (test for PA - if positive PA is definite - in negative PA still a possibility (tests returns 50% false negative results).
Also ask for FBC (to look for macrocyclic red blood cells - though 30% of people with PA or B12 deficency - and neurological symptoms - present without this - though many GP's don't know that 😖).
Also - an MMA test may provide further clarification about B12 deficiency status - raised levels present in B12 deficiency (though other causes too).
Sorry but I'm out of time now. If you click on my username and on the profile page it take you to, click on replies - I've done many replies to,people struggling to get treatment (far too many 😖😖) and you might find something else there that's helpful (though the information,in the links below cover most things 😀).
Good luck....please post again if you need further advice or help with getting treatment from a GP. Here come the links:
stichtingb12tekort.nl/weten... (B12 Deficiency: Neurological Symptoms Can Present Even When B12 is ‘In-Range’ and Without Macrocytosis (large red blood cells) or confirmed PA Diagnosis)
My goodness Foggyme I am awed at the amount of information.have not seen your posts for a while.as i am usually on RLS site if at all.hope your family are well.
Hi Retren. Can't take credit for the information...just sign posted to that provided others...and annotated to help folks find what they need (I know all about foggy 😀).
B12 may or may not be a problem - its in the grey area. Serum B12 needs to be interpreted in context which would include full blood count and symptoms Used as a single indicator B12 serum would result in picking up 5% of people who aren't B12 deficient and missing 25% of people who are - that's because people vary a lot in what levels of B12 in serum work for them - its a measure of one small part of the process of metabolising B12 and is a long way from being a gold standard. Tests that can help to clarify whether or not a B12 deficiency is going on are MMA and homocysteine (which would be elevated) - homocysteine will also be elevated in a folate deficiency.
However using symptoms is problematic as well as there is a huge overlap with symptoms of other conditions including thyroid, vitD deficiency, diabetes.
Folate is in range but a bit low. Folate and B12 are used together so symptoms of folate deficiency also overlap considerably with those of B12 deficiency.
Coeliacs puts you at higher risk of B12 deficiency - partly because of the tendency of auto-immune conditions to occur together - but also because the effects on the gut will affect absorption of minerals and vitamins generally.
Thank you all so much for your comprehensive replies, I shall go through all the links and information you have given me and pass on the most important bits to my son.
I am so relieved that there is such a helpful community of people out there like yourselves who can point us newbies in the right direction as I feel that many doctors are woefully inadequate when it comes to helping us to deal with such complex problems.
Flowchart makes it clear that in UK, people who are symptomatic for b12 deficiency should have an IFA (Intrinsic Factor Antibody) test and start initial B12 treatment. This applies whether serum B12 is low or within range.
6) Book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper. Martyn Hooper is the chair of PAS. He has written two other books about PA and B12 deficiency.
7) Book "Could it Be B12" by Sally Pacholok and JJ. Stuart (USA authors)
from years of trying to find out what was wrong was to always get copies of all my blood tests. I learnt to do this after being told everything was "normal" face to face or over the phone and then finding abnormal or borderline results on the copies.
In relation to B12, I look at B12, folate , ferritin and full blood count tests. There are also MMA, Homocysteine and Active B12 tests.
Low iron can lead to small red blood cells (microcytosis) and low B12 and/or low folate can lead to enlarged red blood cells (macrocytosis).
A person who has both low iron and low B12/low folate may appear to have a normal range MCV on the Full blood count (FBC) because the effect of the low iron on red blood cells can mask the effect of low B12/low folate on red blood cells.
Thank you so much for all the information, what a lot to digest.
I shall read through everything and pass it on to my son, he will hopefully be having some more extensive blood tests early next week so we should have a more complete picture about what exactly is going on when we get the results.
Thank you again for taking the time to post such a comprehensive list of things we should check out, it is much appreciated.
I hope you are well and coping ok with your condition.
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