Ok so long story short, had private blood taken as I have been very ill this last year and the doctor didn't know what was wrong with me after doing the usual blood tests. So after a year, I have had my depression mads increased to the maximum dose, put on beta-blockers for my anxiety, put on anti-inflammatories for rheumatoid arthritis, put on liquid and tablets for indigestion and reflux but nothing has helped the chronic pain and tightness.
So I paid for private bloods to be taken which came back as severe deficiency for vitamin d and vitamin B12. Took these results to my GP who said that they had to take their own tests so went down and had bloods taken, received a letter stating that the following week I had to go down for further blood tests. when I arrived at the surgery I asked what they were testing for they said B12 I asked why and they said because the nurse had forgotten to take them the previous week. and of course their blood results came back as me being in range and not having a vitamin B12 deficiency so as far as they’re concerned the case is closed.
so I wrote them an email with all the different studies the British guidelines and my neurological symptoms including shaking hands extreme fatigue swollen joints and a few others. They never responded to my email but have put me down for a telephone conversation on the 28th.
I don’t have a backbone and I’m scared that even though I’m armed with many facts and studies that they’re still going to blow me off. Does anyone have any advice for me, for when I speak to them?
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Katblak
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Sorry I should also add that I have dyslexia and specific language impairment which basically means that my brain takes longer to process what a person is saying to me and my response to them so when someone starts throwing a lot of information at me my brain has a tendency to shut down until I have a chance to process everythin. It can make me appear slow or stupid.
I've found that I get good results when I've written to my gp; putting all my concerns in a brief letter and also sending a copy to the practice manager.
That way you can get all that you want to say written down without getting confused. If possible I've taken my letters to the surgery and handed them in so they don't get lost in the post.
It takes them a few weeks to reply and you could possibly get a text response or a phone call from the practice manager that just depends on the surgery.
I'm also dyslexic and have trouble retaining and understanding information so I understand how difficult it can be and how easy it is to get overwhelmed 'with stuff'.
I also know from experience how others can get very frustrated when you don't understand something that they consider to be simple to understand; I've developed coping strategies depending on the situation though I usually just ask them to repeat slowly or explain it again.
If you've got your blood results from your private tests, you could do a new post and other members may comment on them for you and offer you advice.
I send them over an email and they responded saying I'm having a telephone consultation on the 28th but I never know what to say over the phone and end up mumbling my words and talking to fast and forgetting everything.
I stopped having phone consultations for that very reason and also struggled with my gp's attitude hence now I put all my concerns in a letter and I have had much better outcomes; I actually got blood tests done after the last letter I sent in.
My surgery can only be contacted by phone or letter; they've never offered nor allowed email access.
If you have a friend you can trust you could ask them to stay with you when you take the call and they could support and help you get through it.
If I can't avoid an important phone call I use a script or notes and rehearse beforehand what I want to say.
Have you got the written report stating your very low figures for severe deficiency : B12 and vitamin D ? I would say that neither of these things happen overnight.
Your GP called you back to have B12 tested "because the nurse had forgotten to take them the previous week". These new results no longer showed any deficiency in B12 - is this due to injections/ tablets given ? Could the B12 deficiency be caused by a B12-poor diet : if not, what is the cause ? Severe deficiency would suggest possible pernicious anaemia - any family members suffer from this ? There can be hereditary links.
Did they also retest your vitamin D ? Had this also been forgotten ?
Do not panic and try to fit in every piece of relevant research available. You can just ask questions.
You have neurological symptoms if you get the shakes -and these are visible symptoms. They also, as neurological symptoms, require a different frequency of treatment. The BNF advises an injection every other day until no more improvement can be gained. Nerves take time to repair, and if untreated, can worsen or become irreparable.
Keep it brief and stick to the facts in front of you. The results of your previous tests cannot just be ignored. If the GP surgery did not believe them at all, they would not have called you in for tests, would they ? Their behaviour makes them seem worried to me.
Have you seen copies of the results of these recent tests ? I would ask for them: it's not rude, it's your right. My GP prints me off a copy as a matter of routine now. It's fine.
Depression, anxiety, slower brain processing could also be due to severe B12 deficiency, or at least exacerbated by it. You might find improvements in these areas too. I really hope so.
(It's possible: I recognise these as indicators when I'm not doing so well.)
Oddly, reflux can also be a sign that you have low stomach acid, and could explain why medication hasn't been effective. Incidentally, long-term treatment with Omeprazole or other PPIs can affect your B12.
Not having a backbone ? That'll probably be the severe lack of vitamin D, then !!
Yeah, I send the report over to them, which is when they said to come in for their tests instead. The doctor couldn't understand what ”active” b-12 meant.
The doctor put the lack of vitamin D down to being in lockdown over a year even though we live on a huge farm and I spend most of my days outside if I can.
I didn't take any supplements or injections in between the different tests, I think it purely comes down to the measurements and testing down.
I have several of the neurological symptoms which is what scares me the most. But I'm at the part now where if the don't agree on the 28th I'm just going to start self-injecting. As I'm slowly losing hope in the GPS.
I just wish I could stand up for myself and say this is what's wrong and this is what you need to do but the moment they get my on the phone I'm like a scared mouse shaking all over. Half the time I can't even remember what has been discussed over the phone and when I try and go back its like a blank memory in my head.
I wouldn't completely give up on the GPs - after all, they will need to monitor your vitamin D levels, if nothing else. I get vitamin D on prescription because I was found to have osteoporosis of the spine - way before the pandemic started. So not something to be left.
Active B12 test (holotranscobalamin or HoloTC test) is is only measuring the active B12 and not the inactive holohaptocorrin (this inactive form can make up to 90% of the serum B12) All of it gets measured in an ordinary serum B12 test as it cannot differentiate between the two forms. So the two blood test results ( serum B12, active B12) will look completely different and cannot be compared.
Did the results from the private blood test state that you had severe deficiencies of B12 and vitamin D ? Keep a copy of these. Ask your GP for a copy of your latest test results, too.
List all your symptoms: I think it would help you. It is very difficult to think straight or find the words to convince someone during a short phone call.
I wrote a list down of all of mine, two pages, with a brief sentence of explanation for each:
everything physical, from "HAIR: hair loss, poor hair quality" right down to "FEET: soles of feet hot and stiff, difficulty walking" on the first page.
I includedissues like "sensory overload" and "confusion/cognitive problems" too, but on a separate second page.
These are useful if you get stuck when discussing symptoms with specialists or GPs, or trying to explain to others what it feels like to be you. They are then yours to share or not, as you feel, either one or both.
I decided I had nothing to lose by sharing this information where it might help a medical professional, even a not-particularly-friendly one. Whatever it takes to get answers. One asked if she could copy them - so now on my medical file at a main London hospital.
I only hope she read them first !
I think Hedgeree is right- difficult doing this alone.
If the private blood tests were from a doctor and not an alternative person testing you by hair samples or making you hold a netla rod while a little dial goes up and down ( yep they do that) then his tests would have had to go to a lab ...as would your normal doctors tests... One or other of these tests must have messed up for one to show severe deficiency and another to show normal range. And lots of things can mess up a test like samples not being testing in time ...also since the first result did you take b12 tablets or vitimin d? Because that would change the results too. You need to get the disparity between them figured out ..they can't both be right. The only way I can see of doing that is having a third test by a doctor and you can tell him you've had wildly different results and need to be sure the tests are done proporly. And you need to see the results. On paper with the labs name on it with the ranges on it. Every time I go to a different doctor with the same symptoms they have had wildly different interpretations...my mom has the same iron levels as me and was told hers were high and I was told mine were normal... Maybe because they're from different labs or a different opinion. So the only way to be objective is to remove an interpration and look at the results themselves. And look at what lab they're coming from and whether they're different types of tests with different false positive rates etc. I've read that alternative clinics often have more sensitive testing and ones more likely to show a deficiency than what doctor suse to they can sell you supplements. On the other hand they also can have more accurate tests. A private place here does a RBC magnesium test which is better indicator of levels than what my doctor gave me but I can't afford the 400$ for it so I'm in the dark. If you can assess whether they are tow different types of testing that would be the first thing to know. Then you can either go for a third of the two tests are rhe same type with differing results to clarify, if you can afford it of course. and if they're two different sorts of tests then you need to decide which tests you feel are more accurate. And if you've taken anything between tests then you need to consider that too. When I got my magnesium test is showed midrange but I had taken a ton load of tablets the night before so I consider that lgocially it should not have shown up as midrange at all and even though I've not got a definitive test the fact magnesium helped me so quickly and obviously to me means all partial evidence put together and critical thought applied I likely have a deficiency despite the normal result. They didn't even ask me if I was taking anything. and the private clinic would have asked me to stop taking anything for the week or few days prior to testing. So that could be an issue. You could also have eaten something and if thou weren't fasted that can make things look different. My fired got high cholesterol from a non fasted test and they were gonna out her on statins when the nurse asked if shed been eating before it...she had. When she got the test done properly her levels were normal...so they do make mistakes and levels go up and down depending. So you have to figure out what is the truth. If it was me I'd err on the side of taking something I thought would help...if it didn't or made things worse I'd stop. That's how I've had to work blindly without a lab in my basement. Other b deficiencies can caused similar symptoms too and if they don't eliminate those at the same time... Like thiamine deficiency can give you the shakes and hand tremors ... Mental confusion... I don't know what they all are but I know a lot of them have similar symptoms...and even sometimes high levels of something have similar symptoms to low which is even more difficult to work out. Doctors are often willing to just try something without evidence... Antibiotics or antidepressants...nobody Eger gets a seratonine test to see if they actually need a SSRI do they? I've been offered asthma meds (don't have asthma) lexipro ( don't have depression) banned strong antibiotics ( didn't have an ear infection screwed me up) allergic rhinitus meds (didn't have that either) all for ringing in my ears!! And itchy ...b12 helped the itching all over sensation and helped reduce the ringing but I wasn't ever tested for b12 ...yet it would have been simple thing to try with low risk compared to the side effects of the meds they offered me and I'm glad I did try it. They were happy to hand me random medications for random things it might have been with side effects but not happy to test me for causes or suggest simple less risky things I might have tried. That is crazy. What if all your issues are from something you lack that you could easily amend? If you knew what you lacked? You won't know until someone investigates and is willing to try... I spent my entire life unable to sleep in winter at night...messed up my school life..completely...that messed up college and career for me...not because I ament abke to study because I wasn't able to wake up for class or sleep at night...people said I'm lazy etc...I've felt like a failure all my school days... Since taking vitimin d my life changed. I can wake up and go to sleep like a normal person. For want of even checking something which is known to cause a seasonal shift in sleep patterns. Don't underestimate the lack of oversight of doctors. People go around with undiagnosed issues and doctors prescribe things without evidence. All the time. So if you can find a doctor willing to retest and willing to try what might work and will do least harm. As far as I know its very hard to overdose from b12 ... So it makes no sense to me not to try it and see. If thwyre willing to give you meds that have long term risks and side effects why aren't they willing to try something which if it doesn't work has at least done no harm? It makes no sense to my simplistic mind. Be simple minded on the phone is my advice too. Doctors hate you to know anything but don't mind questions as much. Ask questions. Ask is it safe to try it are there any risks of trying it ask if there can be errors in tests ask are there better tests ask why your other tests showed deficiency. Ask if there's more of a risk of delaying treatment of a possible b12 deficiency than taking it even if you don't need it. Because as far as I know its way more risky to not take it if you need it than take too much if you don't need it. ask what other things you can be tested for that are known to cause your symptoms as well so that if it doesn't help then there's something else you can test for and try. Write every question done before your phone call and write every answer down so you don't forget. You can even say that because you have difficulty remembering you would like to have the rationale explained in writing. You can also ask if they mind if you record the conversation so that you can review the answers later. For training purposes. Lol. If a doctor refuses to treat you and you get it in writing and their refusal causes a problem they're liable. So they don't like being asked for anything in writing which might be less than a perfect response. And the threat of you even writing everything down that they are saying can make them much more careful. But always come from a humble place which I think you are already. Its worse for arrogant pushy people like me and I have to pretend I know nothing otherwise they react badly. Sounds like your lack of balls may be an advantage here so long as you get your questions in order ahead of time its unlikely they will respond badly. But they might. And that's happened me. Was so polite after being floxxed and my doctor physically backed me out of his office saying I wasn't his patient and shut the door in my face I was bawling my eyes out. They can be horrible but there's no point worrying about it until it happens. and if he's horrible and mean and rude everyone here will send you big hugs. As my lovely elderly neighbour gave me one when she found me crying down the road after that horrid man. I don't even expect help from them any more and that makes it easier to accept when I don't get any. Good luck and sorry for the long post I know the intepidation you're feeling and its horrible. But you will figure it out and you will find your way to getting better and you DO deserve answers and a supportive doctor who's willing to consider options with you. We all do.
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