Hi everyone - I posted about 2 months ago and found the responses extremely helpful. At that time I was due to see a private Haematologist (Dr S) as GP struggled to believe I needed B12 injections more frequently than 3 monthly. Long story - eventually senior partner agreed to follow Dr S's advice to go to 9 weekly and added 'I have an aunt with PA!' Was so overwhelmed at ease of this that I forgot to ask my list of other questions.... Now have recently asked for blood test results - seem to contain nothing re the range used by the lab or any of the more complex tests people write of here. Dr S did arrange an active B12 test - "it showed a very satisfactory active B12 level of >128.0 pmol/l (any result more than >30.0 pmol/l is regarded as being 'normal')" is what he reported. Can I ask for opinions re the test results?
I am still extremely tired and with many of the symptoms we all know. The 9 weekly cycle kicks in in 4 weeks' time. I have started on multivitamins (Centrum women) and have Pure B12 spray which I spray under the tongue two or three times a day, two sprays each time (says 500mcg in each scoosh) - have been using these now for 5 weeks and notice far clearer head when I use the spray. I do notice, looking back, that although I have a diagnosis of PA, I have never had loading injections - just one injection a week for two weeks - and wonder if my system has been struggling to garner enough B12 all this time (since 2010): all due to lack of joined-upness in the practice re maternity cover for GP.
On advice here, am now pursuing thyroid issues - hypothyroidism for which medication of 25mcg has never changed in the 4.5 years since diagnosis. Have got private appt with Endocrinologist next week.
Any comments on the results would be very welcome.
Good wishes.
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grauntieannie
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Hi Marre - I'm so sorry. Can't work out how to make them bigger. Thank you for all your advice at my last post - being much better briefed really helped with Dr S who rather poo-pooed things until I mentioned active b12 etc and he woke up a bit. Still patronising - and did no more than write to GP requesting that they did what I had requested... However, that was a BIG shift! It's such a help to have this group of wise folk behind one to draw on their experience. Thank you!
from what I can make out your B12 levels aren't that high for someone whose getting injections. Presume 2012 at 166 is the point at which injections started. our folate levels were low but those do seem to have improved.
Difficult to interpret things without knowing timings re shots. Active B12 unlikely to mean much if you were having supplementation as that will have skewed the results.
Unfortunately some of us just don't manage well on the normal regimes - I was definitely suffering until I started to go it alone. What the tests aren't really saying is anything about how effectively you are managing to use what B12 you have - particularly at cellular level.
Hi Gambit - thank you for this. I didn't start supplementing until the active b12 test had been done - didn't want to skew the results - but have now been supplementing for 5 weeks and experimenting to work out how much/ how often is best.
I wrote the post after falling asleep for 2 hours - should be more careful to be awake when I write... I first went to GP with my list of 'silly things you don't bother the Dr with' in Feb 2008. That resulted in SVTs being found - nothing needed there, just avoid caffeine. GP was off on maternity leave. Then test re reflux found hiatus hernia and (treated) inflammation of oesophagus - and no traces of cancer which is good as maternal grandmother died of stomach cancer (have just obtained her death certificate).
Thyroid treatment began in August 2011 (sorry, got date wrong) and has remained at 25mcg.
The two b12 injections over two weeks were done in January 2012 when covering GP checked on the previous blood test (my GP was having her second child and there was a gap in following up). Then a gap with nothing so, still feeling not good, I saw GP on her return. She was puzzled at what the covering GP had done and initiated more tests. That was when the lab told her I had long-standing pernicious anaemia - she phoned and asked me to come in for the first of the 3 monthly b12 injections in December 2012. 3 monthly since then. 9 weekly begins in April!!!
I'm sorry not to be quite clear but it has been quite a shock to find that doctor's don't know stuff and I have been slow to challenge things, thinking that it must all be related to ageing.
Thank you for your advice - I do appreciate it. I'm learning that our bodies don't respond speedily but that they will do!
Hi Grauntieannie, unable to read your results clearly, but you should definitely be on more than 25mcg for hypothyroidism after 4.5 years! Usually, 25mcg is a starting dose, and they monitor your blood tests and gradually increase the dose accordingly. I would have expected this to happen during the first year, so you would be on 25, then 50, then 75 etc.... Hope the endocrinologist can help next week. Best wishes MariLiz
Thank you for this. It was an odd experience - and I made a mistake, it's only 3.5 years of under-treatment... The GP covering for my GP's leave started me on 100mcg levothyroxine and the pharmacist took me aside and said a mistake had been made. So back to Dr O, lot of reading of Mimms, apology and on 25mcg ever after. Same Dr O who gave me the 2 'loading' b12 injections with no further treatment. Keep your fingers crossed for the endocrinologist being good - I've settled for one who works both privately and at a London teaching hospital and specialises in thyroid but it all feels a bit of a gamble.
Hi again, that's interesting that they nearly gave you 100mcg. My endocrinologist did start me on that amount, my GP was horrified as she didn't think I had a thyroid problem anyway. She warned me of all the terrible problems I'd have, being jittery, not sleeping etc...Well, I had no problems at all, and in fact I am still on the same dose. Although I am concerned it should be higher because some symptoms have returned. I know it will mean a private endo appointment, as the GP I have now is still reluctant to refer me. Good luck with your appointment. MariLiz
I couldn't read clearly enough to try and be of any help. Also, I know from past experience that some tests are reported in different units in U.K. compared to those I'm familiar with in U.S.
It's helpful that you have a continuum of dates in the results but you should be given the reference ranges (normal ranges) or results mean very little. If you're interested in knowing them you might search online for "lab reference range for (such and such) hospital" or the laboratory where you have testing done, or where your doctor sends samples.
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