I forgot to introduce myself so am editing this, sorry if you have already read it! I am 65 and retired.
I wrote a little while back listing my symptoms and someone (I think the administrator?) suggested I come back with results of private blood tests I was having done. Well the results are back and now I feel disappointed not to have any answers at all, but also confused as I did think my B12 level might have explained things but the vast majority of my figures were more or less in the middle of the reference range. I do have a low Lactate Dehydrogenase (212 (range 310-620), borderline/insufficient Vit D level (despite my being on a supplement and my GP saying only last week that the level was fine in a test a couple of weeks before), my B12 was 355 (range 191-663). I did wonder about thyroid deficiency as well but my Free T4 was 14.42 (range 12-22), Thyroid stimulating hormone was 2.350 (range 0.270-4,200) and Free T3 was 4.5 (range 3.1-6.8). The only strange thing was my Ferritin count which was high at 192.1 (range 13-150) and can't be accounted for by drinking alcohol or any of the other possible factors, but I am told by the GP comments that the high Ferritin is of little consequence.
I get symptoms of continual feelings of being under-par and exhausted, recurrent viral type illnesses resulting in chest/throat/ear soreness, the usual signs of a cold and swollen glands which come and go but my GP says no infection, hair loss, nails that are very poor and continually breaking, recurrent mouth ulcers, joint pain (diagnosed as fibro), tinnitis, vision problems despite new glasses, dizziness (diagnosed as vertigo), and shortage of breath and continual coughing when active or talking for long (diagnosed as asthma). I can sleep 10 hours and still feel exhasuted but do know that arthritis at the top of my spine causes me pain and may be interfering with the quality of my sleep. 9 months ago my health had improved drastically, I was walking 7m frtnightly with ramblers as well as shorter walks between times, had lost 21lbs weight, looked and felt really good. In October I had the flu jab and since that time have had 16 weeks when I have felt definitely unwell and the remaining weeks I have good/bad days but never feel fully well.
I wonder whether anyone has any thoughts or ideas please?
Sorry I have just realised that I forgot to say that I have a lifelong history of depression as a result of childhood trauma and that during the process of therapy to work through the past I re-lived a repetition and felt traumatised. I do not regret the process because it has enabled me to feel real and largely move beyond the depression - now it's more sadness about the effects upon my life now - but I did feel totally overwhelmed for a number of years. When I developed fibro I was not surprised as that fitted with my own understanding of my immune system having been overwhelmed.
If you do have any ideas or advice that will be great because like other people on the site I feel despair about the deterioration in my health over recent years and in particular over the last 9 months. I am not ready to be old!!
Sue xx
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secondhandrose2
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Although your B12 level was in range.... people can show symptoms of deficiency with similar levels. Recent articles and documents have emhasised the importance of treating symptomatic patients.
Your result looks as if it is in the 'grey range' - difficult to tell for sure without the units of measure - but basically in the UK significant numbers of people will show strong clinical signs of B12 but will be told that their results are in the normal range - this is usually anything from about 400 downward.
There are also changes as you get older - but it looks as if the reference range has been adjusted for that (for a younger person 'normal' would start a bit lower).
There are a couple of by-products that build up when B12 isnt available that can help to clarify if B12 levels are in the grey area - MMA and homocysteine but getting your GP to do these is likely to be a struggle. There is also an 'active' B12 test which looks at just the B12 that is used at the cellular level - but that isn't available on the NHS - you can get it done at St Thomas's in London but I think they require a letter from your GP
BCSH recommendation is to treat on the basis of symptoms rather than test results - refer to othe summary
as the risks of neurological damage through not correcting a defiency early enough are quite high if there are neurological symptoms - the dizziness, and joint pain could point to this. Some would include the tiredness in this category but its nigh on impossible to get a GP to accept that.
Unfortunately there is a huge overlap between the symptoms of B12D and other conditions which also makes it difficult to get to a proper diagnosis. Even if B12 is involved that doesn't mean that there aren't other things going on.
I'm not a medical expert - as you know - by any means but looking briefly at what fibromalgia is it looks similar to a lot of 'disorders' that map into B12D in as much as it seems to be a label for a group of symptoms without identifying the underlying cause.
The vitamin D may indicate that you are having absorption problems generally which makes an underling B12 problem a little more likely.
Most B12 is absorbed through the ileum. The body does store B12 in the liver which is released and reabsorbed through the ileum. An absorption problem can take decades to actually manifest in a full deficiency as a result - though as the malabsorption gets worse the symptoms etc tend to accelerate.
Good to know that you no longer feel it useful to use the label depressed but it may be that if the condition worstened around your 50s that it may actually have worsened because you had an underlying B12 absorption problem. I know my own problems wtih depression and anxiety got a lot worse in my late 40s when my B12 deficiency was probably getting stronger - to be honest I had always struggled to identify something that would really have caused a reactive depression so think that I probably had decades of symptoms before things really became obvious and if someone had given me a B12 test at that point the conclusion would probably have been that B12 wasn't a factor - though if B12 had been trialed the conclusions would probably have been very different.
Hi, and thanks for your reply. I'm too tired now to think and respond in any detail, so will come back to it perhaps in the morning or another time - but it is appreciated very much. Suex
I have had a look through your comments, many thanks. I am unlikely to get my GP to do more tests (I see her in a couple of days time) as I live in an area where the GPs are used to not being questioned or pressurised, whereas in my previous middle class address it always felt like GPs worked together with their patients...
I am sure my depression was caused by emotional factors rather than B12 as I was going through repeated feelings of trauma and felt continually overwhelmed by that, feeling really distressed by memories and their effects. I think that has compromised my immune system so that now I am tending to somatise at the drop of a hat!
Suex
Do you have any idea why your ferritin is so high? Ferritin can be increased by inflammation somewhere in the body. It goes up in women after the menopause, and of course with sustained iron supplementation.
I think the high serum ferritin is worth pursuing as a clue. I think (but I'm also v tired! that I've read it sometimes links with low cortisol, ie Addison's. The Iron Disorders institute website might be worth a trawl through when you are feeling strong enough.
Your TSH is within range, but still a bit high, and your FT4 is low, indicating that you may have a thyroid problem building. I felt terrible when I had those results. You could post the thyroid results on the thyroid forum and see what the guys there think.
No, I have no idea at all why my ferritin is so high, I seldom drink and none of the other factors associated with high ferritin levels are relevant to me so I am assuming it is down to inflammation. I have been saying for some time that I feel my nasal drip-type symptoms every day are the result of inflammation in the muscles around my rib cage, have felt that since a very bad 7ft head first fall 5 years triggered general inflammation and led to the fibromyalgia diagnosis.
Thanks, I will post my results on the thyroid website as well. x
Drip from an inflammation of the sinuses is said anecdotally to be v common in hypothyroidism. But I had that with a low serum ferritin. I think you should watch that ferritin level in case it is a sign of something else, especially since there's no obvious reason for it. Is moving towards haemochromotosis (sp?) a possibility???? I haven't ever looked at it, I'm pretty ignorant on iron overload.
Oh I didn't know about that anecdotal link! I googled and found haemochromotosis is hereditary but it is highly unlikely my GP will that up, she won't like that I did bloods privately... but I will talk with her when I see her later this week. Thanks.
hi secondhandrose. i sympathize with ur feelings of being under par & the recurrent viral type episodes. not easy when symptoms accumulate?? there's a couple of things that might be worth considering.
in respect of b12 results: yes the are in the 'grey' area were one can have neurological symptoms/deterioration, together with debilitating fatigue, whilst the serum levels are considered ''normal'' by GP's & the Labs.
in her book 'Could it Be B12D'' Pachlolok posits that as ppl get older they need much higher levels of b12 to maintain normal bodily functioning. she suggest that ppl over 50/60 need levels of 1000 mgs. therefore, the depleting levels over the years may now be reaching crisis level. if ur GP does not respond to persuasion of treating neurological symptomatology, perhaps it's time to supplement with one of the many b12 products on the market. sub-lingual or/and nasal are good routes when mal-absorbtion is a possibility. however, i would try and persuade thew GP for injections if at all possible.
re: the viral episodes. the symptoms u identify, can, as others have said, overlap with so many conditions. one of those conditions is ME/CFS. about 50% of ppl with FM also have ME/CFS. do a google search in the ME/CFS association website & compare ur symptoms. rest & strict pacing is important if this is ur diagnosis. the flue jab is something that could trigger this condition. i have ME/CFS/FM & since commencing on b12 supplementation, my ME etc symptoms have improved massively. low b12 can leave the immune system compromised and struggling with warding off minor infections. an ME/CFS medical expert maintains that ppl with ME/CFS need to keep their b12 around 2000.
Thanks for replying. I have B12 sub-lingual tablets so will start taking them as I understand it isn't possible to overdose B12.
I did look at the various diagnoses but have some but not all of any of them! Certainly my symptoms are not typical of fibro and when I was diagnosed the experienced Consultant said my history (multiple trauma and prolonged stress plus the pattern of joint problem development) was typical of someone with fibro, as was my trigger (a 7ft head first traumatic fall). I get tenderness at the various trigger points and periods of myofacial muscle cramps, but I do not get the levels of constant pain that others in the local support group get. Mine definitely comes and goes and between times I can walk 7m and feel ok, though probably that's as much down to whether or not I am feeling depressed as the mount of pain I am in. Most other people with fibro are on heavy painkilling meds but I won't take anything and manage the pain by moving around, e.g. rocking when sitting at my computer and massaging the area.
I mostly feel confused whether there is a chronic infection that I can't shift or whether there is inflammation due to other factors such as fibro.
Well I saw my GP today and was pleasantly surprised! I gave her my private bloods results and list of symptoms as well as diary of the flu-like symptoms over the last 9 months and she was really supportive. She has ordered a chest x-ray, full bloods including detailed ferritin check and also a viral check - not sure what that means exactly - and then wants to see me again once the results are through. I really am quite pleased and very glad I went back to see her rather than the other GP.
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