Sorry but I think this will be a bit of a rant and it is my first posting - so apologies but if someone can point me in the right direction it would be amazing. I have reached an impasse with my GP and I know he is not going to listen to my reasoning.
I have not felt 'well' for a long time mainly with non specific symptoms of tiredness, overheating, wooly headed. Each time I have visited my GP I have been told that my thyroid levels are fine or that they night slight adjusting. For a couple of years I have noticed that I have been easily irritated by small things and I have been very easily stressed almost with a feeling of panic. And a few weeks ago, just after Christmas I developed tingling in both hands and some degree of achiness, also I had reduced sensation in the soles of my feet, and was noticing a sort of breathlessness on slight exertion, not exactly out of breath just difficult to get enough air. As I had long since lost faith with my GP and figured a lot of these symptoms coud be attributed to a particularly stressful coupe of years I looked up my symptoms and felt many of my symptoms matched those of a vitamin b12 deficiency, so I started to take a methylcobalamin 5mg 3 times a day. There was an almost instant improvement in the tingling in my hands and the aching was almost completely resolved, I also had a bit more puff and
I felt that I should consult my Doctor as I hoped he would take some action to treat what I feel is b12 deficiency because I have hpothyroidism and a family history of pernicious anaemia. I told the GP I had been takinbg massive doeses of B12 but he told me if I had PA this would not show up in a blood test. My results came back: B12 >1500ng/L Serum ferritin 33ug/L, Serum folate 6.3ug/L, my GP told me that I definitely did not have PA, I reminded him of the massive dose of B12 supplement I was taking and this time he said that it was obvious and that if I had PA the reading would still be low as I would not get the B12 in my system.
I told him I am still experiencing some tingling in my hands and that this is worse on some days than others. He has told me to keep taking the supplements and when the weather gets better to stop taking them and let him know if the symptoms return. He told me that he gets at least 3 people a day telling him that they have tingling and aches and that there is nothing wrong.
I don't want to stop taking the B12 supplement in case I get all of my symptoms back, but I also feel that I could feel better and worried in case I'm making myself worse by covering up a possible deficiency.
Thanks for taking the time to read this, it would be good to know if anyone else has had or resolved a similar situation.
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minnymolly
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Its okay to have a rant - most of us hear will totally understand and have been through similar with GPs who just won't engage in a conversation.
Your GP is definitely wrong in saying that taking a supplement would not affect your results. 1% of B12 is absorbed passively, ie outside the ileum and the mechanism that is affected by PA proper - an autoimmune response. I think the RDA for B12 is about 2.4mcg so that means you are taking somewhere around 6000 times RDA which would be equivalent to 60 x RDA if only 1% is getting through via passive absorption.
If the tablets are sub-linguals - ones that you disolve under the tongue then you should actually be absorbing more than this as B12 is being absorbed through the membranes in your mouth rather than through the gut
Ideally it would be useful to get a proper diagnosis of B12 deficiency but totally understand not wanting to stop the supplementation - I'd be exactly the same.
You can't overdose on B12 and there are no known undesirable effects from keeping levels high.
Your folate looks a little on the low side so you might want to look at upping your intake of vegetables etc that are high in B12 and may be consider supplementing folate/using a vitamin B complex.
Although injections are the most efficient way to get B12 into the body they aren't the only way. There are other membranes that you can use for absorption - eg sublinguals - as mentioned above - nasal sprays and even skin patches. If you really can't get through to your doctor and the tablets are definitely helping then you have the option of sticking with that.
It can take time for symptoms to improve as the body has quite a lot of damage to prepare.
I believe you can have the IF test done - still need to refrain from supplementation but for a shorter period - though unlikely that your GP would agree to that given that they won't accept that you could be B12 deficient.
NICE, BCSH guidance is to treat on basis of symptoms rather than test results anyway, given that the consequences of not treating neurological symptoms early enough is permanent neurological damage.
You may also find this site useful as it has some tips for dealing with doctors who won't listen .... and some right howlers by way of responses from NHS
All in all your GPs attitude - the reference to 3 people a day with tingling that is nothing - does sound rather off. How on earth do they really know it is nothing if they aren't doing thorough tests and given that the B12 serum test isn't that reliable - not trialing B12 to rule it out as a possibility.
Better stop there before I go off into a rant myself
Thank you, I would love to hear another's rant, and thanks for all the advice. I am using the sublingual methylcobalamin and have maintained 3 x 5mg daily now for a month. I will look at the patches and explore the links you have provided. Thanks again
Ranting is allowed! We all do it, need to do it. Gambit as always has given great advice. Unfortunately the only way to know for sure would be to stop supplements and I can understand you may not want to risk that as it will probably take a few months of feeling awful before you can get tested again and, even then, there is no guarantee of your GP treating to meet your needs if your level comes back low. GPs still associate B12 deficiency with anaemia. Are you anaemic? Obviously you don't have to be, to be B12 deficient, but it may help your case. With a family history, it is very likely but the GP also needs to look for other causes. It is infuriating when you don't feel heard though! My neurologist said I had no relevant family history! There is a strong family history of pernicious anaemia and hypothyroidism.
Try getting other blood results e.g. Full blood count and posting here.
Great you are not anaemic but probably one reason GP is ruling B12 deficiency/PA out. Every doctor I saw said "but you're not anaemic"! 30% people get neurological symptoms instead of haematological symptoms.
Supplementing on sublinguals will be expensive in comparison to injections. Good luck with whatever you decide to do.
Thanks again. Reading about your experience and reading many of the other posts I know many people have to keep on at their G.P's to try to get them to listen -I will keep trying. In the meantime I will continue to self medicate, which I agree is a big expense but until doc agrees to treat me I don't have a choice. Did you get a diagnosis eventually?
Not really. My GP and I agreed to differ in the end I think. I had B12 below reference range but he refused to think it caused my symptoms despite the fact some were classical and so many things improved on treatment. I actually couldn't believe it. I asked him to give me a reasonable alternative explanation and he couldn't so agreed to continue prescribing which was a relief as another GP was going to stop them. The neurologist was not interested either as it wasn't MS. Very disappointing but overall a similar experience to many unfortunately, so I can understand you wanting to DIY. I am not usually assertive but in this case I had to be. I did my research and made my points calmly and had my husband as back-up.
There are homocystiene and methylmalonic acid test of the urine that do not involve the blood and are considered a better indicator of a b12d than blood B12 levels.
The fact that you already started taking b12 supplements will skew any blood results. It may also skew these urine test results.
Also are you taking folic acid (2 to 5 mg depending on what you can tolerate) and a multivitamin each day? These get rapidly consumed when metabolism getting a good supply of B12. B12 needs folate to do its job.
Self injection with supplies from reputable companies on the Internet is also an option.
Keep a log /diary of all your symptoms / food / meds and exercise / activity. You are basically becoming your own guinea pig in an experiment that you control. Keep your doctor in the loop and give them copies of your log. Initially they will think that you are a nutter but by keeping them informed of your plans and the results, they may come around and support you with a prescription of B12.
Also read other entries in the PAS forum as there is a lot of material available to print off and show your GP.
Great advice from everyone. I have read and learnt from others that it is a good idea to take a GOOD B Complex when taking B12 - to keep all the B's in balance. Thorne Research is a good one - and contains methylfolate rather than Folic Acid.
How is your thyroid behaving ? I have been reading your other posts...
Thanks Marz. I am taking a vit b complex but thanks for the recommendation for the Thorne Research one I will go for that one next time. As far as treatment for my thyroid is going I have just reduced my dose slightly as I was getting palpitations and overheating a lot. To be honest there are times when I'm not entirely sure where one condition ends and the next one starts!😖
it can be so confusing. Do you have any recent blood test results for your thyroid ? Maybe I can help. Sometimes lowering the dose causes problems too and it may be an increase you need. Does your Doc test the FT3 ? If that is at the top or over in the range then you could attribute your symptoms to too much medication. So many Docs do not test the T3 due to costs - but as it is the active hormone needed in almost every cell of the body - then it is important to know where it is in the range....
My T3 is 5.6 pmol/L and the range given is 3.80 - 6.00pmol/L, T4 is 17.7 pmol/L the range 7.9 - 20.0 pmol/L and my TSH is 0.33 range is 0.34 - 5.60 mu/L. I know my Doctor said ref thyroid he felt I might be slightly over medicated at present but he decided not to change meds. I'm never sure whether it is good to have high or low numbers for these tests. 😊
You need the TSH to be 1 or under. The FT4 in the upper quarter or near the top and the FT3 in the upper third. So yours look good as you are converting the T4 Levo tablet into the Active T3. Lots of people don't. Are you on a high dose ?
Maybe the Ferritin needs to be a little higher - on the Thyroid forum they do suggest it being halfway in range - around 80/90. Wonder how your VitD is - as when that is low it can make you feel out of sorts. It is a steroidal pre-hormone and needed in almost every cell of your body - just like the Thyroid hormone T3.
I know so much to think about - but having gone down this route during years of finding answers I know the journey is worthwhile !
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More B12 or not?
Amazingly bad GP
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Anyone in the Fife area received a call from their GP stopping B12 injections.
