New here, bit scared and have questions!

Hi, I've been hanging out on the Thyroid forum but now venturing over here as I am concerned about my B12 levels (amongst other things).

Over the last 3/4 years (when I hit my 40's), I gradually started to lose energy (physically and mentally). I know that stress may have been to answer for a lot of it but about 12 months ago I very suddenly went downhill. Within the space of a few weeks I went from walking 2/3 miles daily and swimming 3+ times a week, to barely being able to make it up the stairs.

I also became very very anxious, shaky, withdrawn and started experiencing insomnia. Dizzy spells, problems with balance, very forgetful etc.

I went to my GP, he wanted to send me home with antidepressants and said he thought I had ME. I refused the treatment and demanded more tests.

I saw a neurologist who was pretty bloody patronising and contradicted himself many times but he was able to rule out anything sinister and basically sent me on my way.

I saw an Endo who was a bit more approachable but basically agreed with my GP and Neuro that I probably had CFS/ME. He did do some additional blood tests however which indicated that I was peri-menopausal (which could explain a good few of the symptoms that I experienced)

A year later I am on a low dose of HRT and also 200mg Sertraline. I do feel better to an extent but I am a long way from feeling back to normal and still have days/weeks where my energy levels drop and I'm really struggling again.

The blood test results came back as follows:

Ferratin 10

TSH 3.0

B12 215

Hb 14

T4 was also measured by consultant - I *think* it was 17 but not 100% certain.

Cholesterol - can't exactly remember but both good and bad were high?

Diagnosed as pre diabetic

BP and pulse slightly raised

I'm gradually working on my Ferratin Levels but the only iron that I can tolerate is in liquid form (Ferroglobulin)

I have SL Methocobalamin B12 following on from recommendation on another forum and pretty much have one on the go throughout the day (when I remember)

My question is where do I go from here?

Numerous GPs and consultants have said that my TSH and B12 are absolutely fine. Are they?

I'm not sure about my B12 and would really like to get it higher so am considering organising my own injections.

Would you recommend this, can it do any harm? I tried to get an appointment with Dr Skinner because I am based in the South West but she is no longer taking on any more patients. Is there anyone else you would recommend that I see instead?

Sorry, this a long post but thanks for reading! :)

4 Replies

  • Per haps ring PAS office, they will more than likely be able to recommend a GP near you, where you can go and possibly get help for injections. I am not able to comment on thyroid issues.

    It is a shame you have started self medicating as it would be better if you had first further testing, active B12 and MMA, with your low normal serum B12 result. It could have meant you would have had a firm diagnosis and treatment trough NHS. But that hip has sailed.

  • As Marre suggests - PAS office may be able to help - they also have a nurse who can provide advice as well.

    You can't overdose on B12 so that's one less thing to worry about.

    It would be good to know what your folate levels are like as you need folate to absorb and use B12.

    Have you noticed difference from the sublinguals? You can also try nasal sprays and skin patches - nasal spray works well for me. You may also want to try different forms of B12 - Methyl tends to be good for neurological problems but that isn't true for everyone - I find hydroxo works best for me on the neuropsychological - depression and anxiety - but methyl works best for me with neurological problems - particularly feeling in my left foot.

    Anxiety and doing a lot means that you use a more B12 if you are active or under stress. Ironically sports coaches tend to be a lot more aware of B12 than medics. My anxiety levels were very bad before I managed to get my B12 levels right - think changes in Hormone levels can also affect how much B12 you get through - though that's based on my own observations rather than any sort of scientific study :) Unfortunately it is really common for people with B12 problems to be fobbed off with anti-depressants rather than investigating the possibility that they need more B12.

  • Thanks for the replies, I have gone back through past posts and remembered that my folate was checked and the result was 12.5 - within normal range apparently?

  • HI Clarity,

    Good luck with finding a solution. Your ferritin appears to be at the bottom of the range and your B12 seems to be in the "grey zone" eg within range but at a level that can cause symptoms.

    Sometimes it is helpful to post the ranges for your blood tests as different areas of UK have different ranges. Some people have both iron deficiency anaemia and B12 anaemia. Iron deficiency makes the red blood cells smaller (microcytosis) and B12 defic or folate defic makes the blood cells bigger (macrocytosis). Hopefully I got that right.

    Have you had a full blood count recently? If so, perhaps you can get a copy of your results from GP. A full blood count includes a measurement of MCV (Mean corpuscular volume) and MCH (Mean corpuscular haemoglobin). The results of these could indicate whether or not you have macrocytosis which is associated with B12 defic. However if you have both iron defic and B12 defic the results for MCV and MCH can appear normal.

    Helpful websites

    Helpful books

    Could It Be B12 by Sally Pacholok

    Pernicious Anaemia: the Forgotten Disease: The Causes and Consequences of Vitamin B12 Deficiency by Martyn Hooper

    Living with Pernicious Anaemia and Vitamin B12 Deficiency by Martyn Hooper

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