Hi. I have just got a print out from my doctors with regards to the numerous blood test I have had due to symptoms for extreme tiredness, (keeping falling asleep) weakness throughout body, including legs and arms, muscle pains, pins and needles throughout body especially lower limbs (worse in feet on a night time), hair loss, ringing in ears, forgetfulness, bloating, feeling nauseous, IBS. Anyhow when I have looked through them I have noticed that my B12 levels have continued to drop however my doctor says they are normal, so I'm after some advice as I have an appointment on Friday and would really like this sorting as it as gone on for a long time and symptoms have got worse over time and I'm currently off work on sick at the moment, They have diagnosed me with ME now, but I feel its more to do with either my b12 or thyroid. (My TSH levels are in normal range but continued to rise). I also had a Vit D3 level of only 6 and was given loading dose, this has now finished and due to get Vit D levels taken again this week.
August 2016
TSH 3.25mu/l (0.35-5.5)
serum B12 560ng/l (190-910)
serum folate 4.8ng/l
Mean cell haemoglobin concentration 316g/l (320-360) slightly below
Sorry for the long post would just like some advice and to get to the bottom of things. I did post something the other day and had a reply off two people so thank you but I didn't have this print out then so didn't have all values.
Thank you for reading and hopefully I can get to the bottom of this with your guys help
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vicks05
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Thank you. My MCV was in normal range. Yes I will mention MMA when at the GP. Thanks
If I were you I'd pop over to the Thyroid forum (where I usually am!) too and post those results, your thyroid is definitely struggling. Even though your TSH is 'in range' it is far from optimal. Also your T4 and T3 are very low in their ranges. Of course, Vit B12, folate, ferritin and Vit D are all important too, if you've had any of those tested (apart from, obviously, B12).
Along with MMA ask for Homocysteine as well. However, although your b12 is dropping it is still in normal limits. Your MMA and Homocysteine may remain normal until your b12 drops to deficient levels. Good luck and feel better
some things to point out to your GP - aside from the falling B12 levels (though the drop between March and June could be within the bounds of noise on the test results).
a) serum B12 is not a gold standard test - people vary a lot as to how serum B12 relates to what is happening at the cell level with the result that taken as a single measure of deficiency it will miss 25% of people who are B12 deficient but catch 5% who aren't so evaluating symptoms is important
b) 25% of people who are B12 deficient do not present with macrocytosis so using this as a defining characteristic of B12 deficiency is also going to result in missing 25% of people who are B12 deficient.
c) UK guidelines are to treat on the basis of symptoms rather than test results if there is a discordance, particularly if you have neurological symptoms (eg pins and needles) to avoid the risk of permanent neurological damage
These come from the BCSH guidelines for diagnosis and treatment of cobalamin and folate deficiencies which your GP can access through the BNF but are also available here
Thank you for your comments. I've just returned from a hospital appointment and left extremely frustrated that then leads to tears. It was with regards to something else but when he asked what did I think could be causing my symptoms I mentioned my B12 and thyroid levels and that my B12 has dropped and things I have read stated that if you have symptoms then you should still treat and in some places or countries if the B12 level is under 300 then they will treat. Also mentioned that TSH should be around 2 mark and just got well they are in normal range, so wont be them and all it seems is that they want to give me the diagnosis of chronic fatigue. I explained that a lot of people get misdiagnosed with this as doctors aren't willing to treat symptoms, but again just get no its more than likely chronic fatigue as levels are in range. I'm due to see my GP in a few days (well a locum doctor at the surgery, so may be a waste of time), but I will be left frustrated and angry if I get the same response, which I have a feeling I will. I just want to feel better and be able to have to energy and rid of symptoms to start living my life and why can't they just treat symptoms and then if that doesn't work then I will hold my hands up and accept its CFS but at the minute I don't think it is that.
Sorry for the rant I'm just feeling a bit let down and that I'm not been listened too
Have you considered writing a letter to hospital consultant expressing concerns, extracts from B12 documents, symptoms, blood results? My understanding is that a copy of lettter would be included in medical records especially if a patient requested this.
My experience in UK, is that once a person gets a label of ME/CFS, it is extremely difficult to get any further investigations done. in UK, the diagnosis of ME/CFS is supposed to be a process of exclusion eg other diagnostic possibilities should be excluded before a diagnosis of ME/CFS is given.
Interestingly when I last looked at the NICE guidelines for ME/CFS they did not specify carrying out B12 tests which I was rather shocked by. Hopefully it has been updated.
If I had accepted being labelled with CFS, I think by now I would have spinal damage and dementia symptoms.
"I have noticed that my B12 levels have continued to drop however my doctor says they are normal,"
I have read that it is important to treat any co-existing B12 deficiency if treating a folate deficiency. See Management section in link below for more info on this.
Thank you for your reply and the links. I have printed information off and have put a file together to take and discuss with the doctor. I only hope that they will take things on board. Thanks again, it is really appreciated.
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