4 weeks ago I started B12 loading, but today I saw a different GP who told me the first doctor was wrong in diagnosing pernicious anaemia and that my problems were down to my diet!!
I was very upset as I know my diet is not at fault.
My pituitary and thyroid stopped functioning when I was 15, which led to amenorrhoea, fybroids and eventually a hysterectomy. I have been on thyroxine, estrogel and fluoxetine for years now, but have had constant headaches and low energy. Over the past 18 months I have got every bug going and have been absolutely exhausted.
My blood results are all listed below... I am long past the end of my tether and desperately need help and advice, so hope someone can help. Thanks.
Albumin 37 (35-50)
Alkaline Phosphatase 62 (30-130)
ALT 12 (9-55)
Basophils 0.03 (0.01-0.10)
Bilirubin 8 (0-20)
B12 192 (200-700)
Chloride 107 (95-108)
Cortisol 579
Creatinine 47 (50-100)
Eosinophil 0.19 (0.1-0.50)
Fasting Glucose 5.6 (3.7-6.0)
Folate 5.9 (3.0-20.0)
Gamma GT 17 (6-35)
Haematocrit-PCV 0.42 (0.37-0.47)
Haemoglobin 145 (120-160)
Immunoglobulins 4.5 (0.8-4.0)
Large unstained Cells 0.11 (0.05-0.5)
Lymphocyte 1.6 (1.5-4.0)
MDRD=GFR >60 (60-140)
Monocytes 0.30 (0.2-0.80)
Neutrophil 2.9 (1.5-7.0)
Platelet count 253 (140-400)
Potassium 4.3 (3.5-5.3)
Red blood count 4.9 (4.0-5.0)
T3 6.4 (4.0-7.0)
T4 26. (20-25) (my endocrinologist wants my T4 to be around 24-26)
Serum Thyroglobulin 10 (0-55)
Thyroglobulin autoantibodies <20
Tissue Transglutaminase IgA <1.90
TSH <0.02 (0.55-4.78) (been this for years!)
Urea 5.4 (2.5-7.8)
Vitamin D - 23 (<25 deficient)
White cell count 5.2 (4.0-10)
Thanks for reading.
Written by
Morayshasha
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Thanks for taking the time to read my post & ask some questions.
All the bloods were taken before I started the b12 injections, or within the first week of the injections starting.
I eat a very varied diet and am neither (nor have ever been) vegetarian or vegan, so do eat red meats, poultry, fish, eggs, wholemeal bread & pasta and lots of fruit and vegetables. The only thing I don't consume is milk, but I eat cheese and yogurts to get calcium. I am absolutely certain my diet is not to blame.
I recently had a detailed bone scan and it was "excellent" according to my doc.
I got 6 hydroxocobalamin injections over 2 weeks, but the last one was 4 weeks ago, hence seeing the doctor to ask what happens next? The only thing I've noticed so far is that my skin isn't quite as dry, in fact I've got some spots (I'm 45!).
For years I have been tired and had sore, dry, hacked skin, hair loss, memory loss, severe mood swings, headaches and just "an aching core" that I put down to being hypothyroid and working full time. But the past 18 months I have been getting every illness going, repeated bladder infections and have been so exhausted that it has affected my marriage, my social life, work and my income as i have had to cut my hours. (Laterly, I was coming home from work, going straight to bed and sleeping until my alarm went off the next morning, every night!).
The doctor today knew nothing about me, hadn't read my history and was so dismissive and uninterested. I have now taken the first available appointment to see the initial GP, but it's not until the 14th February!
try speaking to the GP - its possible that they may be willing to provide maintenance shots more frequently than 8 weeks (which is what the licence for B12 is - not because more is dangerous - but just a quirk of the way licencing is done - in Germany recommendation is monthly with hydroxo) - nobody has come up with any evidence to support the 3 monthly used in the UK. Some people lose B12 from their blood much quicker than otehrs making 3 months a complete nonsense. You could ask for another B12 test but it could also come back high as it is possible to have lots of B12 in your blood but not enough getting through to cells - functional B12 deficiency - general treatment for this is more B12 to overcome whatever is the blockage that is stopping the B12 in your blood getting to the cells.
You could also go down the self-supplementation road - only injectable B12 covered by prescritipn regulations and you can source high dose (>1000mcg) tablets, sprays etc which are affective for some people but don't work for everyone.
Have a look at the Pernicious Anaemia Society website, there is some very useful information on there. I found the full symptom list especially helpful, as some of them I hadn't realised were down to the low B12. You can print it, and tick all that apply to you, and take it to your next doctor's appointment.
Hi. Have progress. I wrote a letter to the Medical centre and next day got a call from the practice manager who gave me an appointment with the main GP. He has put me back on the B12 injections, is referring me back to an endocrinologist and wants to meet with me on a monthly basis to make sure my health is being monitored.
One thing I'm not sure of though - he advised me not to supplement with Folate as it may confuse the next set of bloods.
Should my folate automatically improve after a time on the B12?
Just to say thanks to all the interested people on this forum. I was eventually diagnosed as having had complete hypothalamic failure and severe growth hormone deficiency from my late teenage years. Last year, age 47, I started 8mg growth hormone injections daily as well as my levothyroxine and B12 injections and i am feeling so much better. I still have the odd 'down or tired day', but in general have more energy, better skin and hair and am happier. Can't believe it took so long, but I am so glad I have finally got some answers!
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