Was severely Vitamin D deficient a year ago and am only scrapping into normal range even after taking twice RDA supplements daily.
Doctor has sent me away to wait for another 6 weeks (have already waited for explanation of why I feel so wretched since last year....including a possibly unnecessary surgery on another condition) to review again later.
But I don't know how much longer I can cope with the symptoms, I am extremely fatigued, foggy headed, faint at times not to mention breathless to the point of calling ambulance on occasion, and my hands are so sore. To top it off my moods have changed dramatically and this last week I can honestly say my paranoia has morphed into possible depression, sobbing about everything and at the moment feeling hopeless.
I am 28, meat eater and have never had stomach surgery.
My doctor is lovely but I feel like he doesn't understand that I can't stand this anymore.
I don't know whether to make appointment this week (his saw me last week and sent me away to take oral pills -even though I have already been taking them) and beg him for at least the loading dose of injections.
Any ideas or advice?!? I am desperate!!!!
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dot7
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It sounds as if you do need to try the injections urgently. If it were me, I would go back and ask again, with a typed list of symptoms including the ambulance call outs and possibly a relative or friend for support. If you can take some of the documentation available about treating according to symptoms (I don't have the links), that might help, but it sounds like your results are low enough to justify treatment anyhow. Presumably you can't work or are having difficulty working or looking after yourself and/or family due to this, sometimes Drs take this reason a bit more seriously. Presumably the Dr is treating the iron def? It sounds a bit odd that you're being asked to wait 6 weeks.
I haven't called out the ambulance (sorry my phrasing was poor) but I have been close to calling due to severe mess of the breathlessness.
Nothing for the iron so I am self treating with over counter supplements.
I am a PhD student so I have the ability to work from home but I used to go into the office but over the last 5months I barely go in at all now.
I think he is making me wait 6 weeks as the last b12 test was 6 weeks ago and apparently the NHS won't measure two b12 samples taken within 3months of each other.
But I literally can't bare the thought of waiting 6 weeks more hoping the supplements will suddenly work. I would have thought if I can't absorb it from my meat filled diet then how can I from a pill.
My GP has dismissed my b12 levels now my PA test came back negative.
I have read somewhere that you can be PA negative, but still suffer from it. Perhaps another member can find a medical reference for that? With your symptoms you should be having loading injections immediately anyhow. THEY ARE REALLY CHEAP!!!
I'm surprised that with results of 140 and the fact that you appear to be symptomatic, you were not given a trial of B12 injections.
The BMJ article (Link is above) says that if the symptoms indicate B12 deficiency then you should be treated to prevent neuro damage.
Have you ever had a test for anti-intrinsic factor? A positive test for this indicates PA ( Pernicious Anaemia). Be warned that you can still have PA even if the IF test is negative. Info on this is in BSCH guidelines. Do you have any relatives with PA or B12 deficiency?
My top tip is to always get paper copies of blood results. The surgery will probably charge.
I found it helpful to get copies of ferritin, folate, b12 and the full blood count in particular. On the full blood count, high MCH and high MCV can indicate the possibility of a macrocytic anaemia. Low b12 ( or low folate) makes red blood cells larger. Low iron makes red blood cells smaller. If you have both low iron and low B12 ( or low folate) then your red blood cells can appear to be normal.
Your levels are really very low. Just think that up to80% of B12 blood serum levels can be inactive. At that level, I had 150 , I was given loading doses. Since then I have had to self inject, as the doc won't let me have more than one jab every 3 months,which is nowhere near enough.
At 150 I had breathlessness, dizziness, confusion, numb feet,and terrible fogs. After the loading injections(5) the difference was enormous. I self inject now(methylcobalamin) My feet are no longer numb, but just burn, but I can cope with that. I do hope that you can get help very quickly now. Othwise this site will be your best friend. There are loads of really knowledgeable people who will help ypu . All the best.Remember you have friends here!
I understand what it is to be desperate and be pushed away again and I feel for you. There are people here who are listening and Sleepybunny's links are very helpful (thank you, Sleepybunny).
I know you feel your Dr is good but different people have different ideas and another Dr might help more. I saw a Duty Dr on Friday and she has agreed to let me have an extra jab when my usual, usually helpful Dr wouldn't. Frodo's advice is good: it's your life so don't be afraid to do whatever you can to get them to help. Do tell them really how desperate you are and that you want some action NOW.
I admire your sense and courage to keep trying when you feel so rough: good for you - go for it! You will get there: I and so many others have done by using the advice here and it's amazing how much better it is possible to be so focus on that. Try to remember it is only a short while in the scale of a whole lifetime.
It is strangely comforting to know others have same symptoms as sometimes you can feel like your alone with it.
The thing is my symptoms have progressed since my doctor first tested for b12 but now he seems happy to leave it.
I know 6 weeks isn't that long in reality but at the moment I am not a functioning person. If I had a job that required me to go in 9-5 I would have been sacked or had to quit ages ago.
Good to know you can self inject, I might have to look to that as a last resort.
Your B12 level is very low dot7 and deficiencies begin to appear in the cerebral spinal fluid below 550 pg/ml The tablets the GP has given you will almost certainly be cyanocobalamin, which are not easily absorbed and will skew results for further tests, which you need to explain why B12 your is so low.
In the meantime, it is vital not to delay treatment, as there is a short window of opportunity for injections to work before neurological damage becomes permanent. SleepyBunny has given all the latest information for your GP on treating symptoms and there is is page with templates on writing to your doctor on the following site. This film is also useful for explaining B12 def. to those close to you and it could be useful in enlisting their help to obtain treatment urgently.
If your GP will not read the guidelines, this summary from the BMJ research document might be worth taking with you to emphasis that neurological symptoms precede anaemia and, as you could have both, should be treated without delay:
Cmim/BMJ document. " Summary:
* Vitamin B12 deficiency is a common but serious condition
* Clinical presentation may not be obvious thus leading to complex issues around diagnosis and treatment.
* There is no ideal test to define deficiency and therefore the clinical condition of the patient is of utmost importance."
* There is evidence that new techniques, such as measurement of holotranscobalamin and methylmalonic acid levels seem useful in more accurately defining deficiency.
* If clinical features suggest deficiency, then it is important to treat patients to avoid neurological impairment even if there may be discordance between test results and clinical features.
Severe deficiency shows evidence of bone marrow suppression, clear evidence of neurological features and risk of cardiomyopathy.
It is important to recognise that clinical features of deficiency can manifest without anaemia and also without low serum vitamin B12 levels. In these cases, treatment should still be given without delay."
Or type Vitamin B12 Injections into ebay abd their listings come up. They are UK based, are reasonably priced and can organise injections for you if you dong want to self administer.
I can't get an appoitnment with my GP till next week so I contacted the private Dr who figured out my vitamin D issues a year or so ago and am seeing him on Friday. (Not cheap but might be useful)
Hopefully his opinion on my results and me bringing some of the above info can convince my GP to give me loading injections at least.
Please read research on Vitamin B12 tablets you can take 1000ugs tablet daily with no side effects. You can take 2 tablets for the first week. Its dangerous to be low in B12 it caused brain damage and leaves you with a 5 minute memory.
Homostyine is a toxin from meat & fish and vitamin B12 lowers this toxin.
thanks Victoria1000.....I have been taking 1000ug vitamin b12 supplements for three weeks but have actually got worse with symptoms getting worse so fingers crossed the doctors will see sense and give me at least an initial boost with injections until we figure out what's wrong.
Cheers, I will definitely try and sort this our adapt, I hadn't realised before today and everyone's comments that the symptoms weren't all reversible with b12.
Good luck! Bring copies of your blood results from GP. Pointless paying to get B12/Methylmalonic acid/homocysteine or active B12 checked privately as you have started supplementing so your best hope is that they will advise Gp to prescribe injections based on your symptoms and results which should be enough hopefully.
im very new to b12 so cant give any advice ,but joined an excellent d 3 group on face book called vitamin d wellness ,they will give you all the advice and what to take ,recomend ,10 ,000 iu of d3 ,in a gel cap ,and vitamin k2 and magnesium ,iv been on this since feb and my levals went from 50 ,borderline ,to 150 in 12 weeks and feel so much better ,why dont you join and see what you think.
im also low in my iron stores have been for years and i take ferrious gluconate ,1 tablet 3 x a day recomended by my dr ,also a food source vitamin c with each dose ,helps you to absorb the iron, i was 9 ,but since taking the food source vitamin c ,its gone to 25 in 12 weeks ,the absorbic acid ,man made vitamin c just upset my tummy and the other one is natural powderd fruit and vedg ,in a capsual ,i got from amazon ,recomended to me by my vitamin d3 group ,its called ,natura C ,,FOOD BASED VITAMIN C .hope this helps.
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