I’m sitting in A&E at the moment, I had a angiogram CT scan, they pushed through two lots contrast, which made me feel so ill, I then developed a terrible headache excruciating they let me go home! I’m now in A&E headache terrible like my brain is being squeezed I still have not had any injections for B12 deficiency despite my very low readings in there totally deficient range range of both b12 and folate, does anyone know if iodine contrast effects b12 or folate my neck has become totally stiff, they just done bloods but would not say what they were! I’m in so much pain with my head and brought in by ambulance but only seen a nurse who took the blood have no idea what’s happening 😳HELP😔
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Steph0077
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They are absolutely not! They sent me home same headache same deficient b12 and folate tests no injections nothing expect overdosed me with radiation and iodine contrast! Not fit for purpose, my head is pounding has not gone away since the contrast, and I’m scared, where do I go now 😔
Sending hugs, best place to get treatment you need.
Thank you, that’s really kind ❤️I know it actually seems so crazy that it defies logic, I’m going to change the GPs now, I have found a Constant 200 miles from where I live who I have sent all my blood tests to who says there is absolutely no doubt I have PA and also am iron deficient, it’s going to cost around £1400 to get treatment, he will teach me and my partner how to inject its £800 for my treatment and rest is in hotels and travel etc I’m unable to work so it’s literally all my savings, but I have no choice, I actually believed that the hospital consultants in A&E would do something this time, it’s shocking that this is happening you could not write it 😳😔
Your health is the most important thing, yes it is your life savings. We have had problems too, have cost thousands in different therapies and now private specialist, Nawhal also doing the same.The NHS is no longer fit for purpose. Steph you are not alone in this, thousands are suffering needlessly. Hopefully treatment will restore you back to health. I inject the other half now, and once you get use to it, you will have less stress dealing with clueless doctors.
If , as you state, “there is absolutely no doubt that you have P.A. “ then you must have had a positive Intrinsic Factor Antibody test . All you need do is to present the evidence to your GP. and you will get B12 injections.
Rather than pay huge sums for treatment , you can self inject very cheaply . That’s what I had to do even having had a positive Intrinsic Factor antibody test , but could not get B12 injections often enough . I will send you the information .
See what the bloods results say - wait for the GP to invite you in to talk to you.
If they say there is nothing abnormal in your bloods and haven't taken your B12 and folate then insist that they do and say that you won't leave until they've checked them.
If you're lucky, they may have a different range to your GP. If that happens and you're under range then take it back to your GP to show them. Then get your injections.
This is the last resort to get your injections from the GP.
I have heard that people can be adversely affected by the contrast. I can definitely say that migraines and cluster headaches can be a symptom of B12 deficiency. On daily cyanocobalamin injections that I administer, it took about 4-5 months for the migraines to leave me. Cluster headaches left me fairly quickly once I started treatment. Hope you can get started on treatment soon and feel better.
Contrast can have adverse effects. Years ago, I had a CT with contrast, I passed out and woke up in a room. They said I had a reaction. I was told to not have contrast anymore. I felt a bit sick for days afterwards. If you don't feel good let them know. You're in a safe place. Good luck. I hope you feel better soon. Hugs
Thank you❤️ it was the pits tbh 30 hrs no sleep, still with a terrible headache, told I Don’t have PA but that they want me to see neurologist as I have worrying neurological symptoms, pins needles absent reflexes etc apparently b12 was 199ng/l one doctor said then another said it was210ng/l, but hey everyone lacks some vitimins go home and chill out the Dr told me 😳 here’s my foot lol just thought I’d pop that on to show you how pale I am
Hi Pickle500 thanks for the reply yes very frustrating and certainly makes you angry, I feel like is this really happening 😳it’s so shocking! I literally have mastered the art of knowing within one sentence weather a DR or nurse is half decent or not! It’s a sad state of affaires but it’s true, it was an SHO yesterday (side kick to the Consult) who got me on my own and told me 1.the contrast iodine dye they overdosed me with was safe or they wouldn’t be giving it to the rest of the patients (they gave me two lots one after the other!) after pervious consult (who had gone home by that time) had admitted me for possible subacute hemmorage and was expecting me to have tests done to check this out (he quashed those requests) hes an SHO I since found out still in training 🙈
2. You need to relax stop worrying go home and chill he said you do not have Pernicious Anemia do you understand??? Then said get some folate acid and increase your meat intake that will sort that out! I have no words, yes I have to get the injections asap now I going to arrange that today, I’m also going to hit them where it hurts and am going to file a case of negligence once I’m. Hopefully on the road to recovery, it warrants that, maybe it’s going to take a lawsuit for them to wake up and be fully trained when it comes to such an easy thing to diagnose, I was suspected of having something called Claudia Equine syndrome by God did they move fast on that front, I was in an mri scan within 6hrs ordered by the GP and the reason why (I was told by the radiographer this) that it is because they have been fully briefed that missing that diagnosis is catastrophic financially for them when it comes to negligence! Enough is Enough now on the B12 front, there is an epidemic coming especially with all the vegans now, 🤬
Gosh I'm so sorry. That is enough to really tick you off. My gastroenterologist said the same thing last month said I wasn't anemic. And also said I didn't need B12 because my readings were >1500. So i was ok now. I had to correct him. Sleepybunny posted some great links the other day that I printed out and plan on taking to all my docs with me so they can make a copy for themselves about how you can't go by the blood tests anymore for b12 because we inject. But yours is too low. 199 and 210 is too low. Mine was 221 and luckily my doc thought that was in the tank as he put it. You need to get some b12 in you. You can have PA without being anemic. I am not anemic. I have been at different times but at the time I was tested for PA I was not anemic. My doctor said I have PA but the gastroenterologist said I didn't. Go with your symptoms Steph0077 and try to buy your own B12 and start giving yourself injections as soon as possible. There's plenty of links in this form as to where to buy them. I buy my cyanocobalamin from the Canadasuperdrugstore.com in single-dosed ampules and the 30ml syringes because they don't have 20ml. Everyone was here to help me as I'm new to this and just learning. We will be here for you too. Good luck. Let us know how you're doing. Hugs
It’s gone from bad to worse first they overdosed me with 2 lots of contrast (iodine) and sent me though the CT scanner twice! Dr doing it said it hadn’t worked so needed do it again, I ended up feeling really poorly with a headache like nothing I have felt, I literally wanted to bash my head on the wall to stop the pain😣they sent me home 15 mins after the test.
I called 111once I was home they said to call ambulance ended up in A&E had to have another CT scan (without contrast) to check for a bleed on the brain, so I’d had 3 CT scans in 10hrs the headache was terrible they kept me in to do a lumber puncture in the morning, I told the consultant about pernicious anemia and she agreed to check my b12 levels after telling me my white cells were up and inflammation markers were high and she thought I may of had a subacute haemorrhage, I was then admitted to AMU they identified a range of neurological symptoms, they changed there mind on the lumbar punctur, and said I did not now need that! I needed to see a neurologist,and no other tests! and they would write to my GP to tell them this, and they would discharge me home, I still had the headache, bearable but still painful and by this stage I was 30 hrs with lout sleep😳 I asked about my VIT b12 levels one dr said it was 210ng/L the other said it was 199ng//L?? The nurse said it was not in my notes! they did not confirm my folate levels or any other blood test results, I said I absolutely think I have pernicious anemia and need injections the two consults togeather told me I did not have Prenious anemia and over the counter pills was fine and I did not have any of the symptoms of PA, but the pins needles numbness weakness brisk and none excistant reflex’s needed to be checked out by neurologist in case they were missing something!!!!
I explained all my fathers sisters and grandmother had it PA also, they told me to take a break from worrying and see the neurologist when the appointment came! And many people were deficient in some vitamins but injections were not needed, and pills were fine🙈I have no words I am exhausted
I remember running across an article about deep tendon reflexes being absent. It is a neurological thing to do with your spine and tied PA. Google that because the information is there. And definitely go see your neurologist. But I suggest you Google that and bring some information with you so that you have something to have an informed conversation with. 🤞
I don't want to make you more worried or anxious but a large amount of iodine contrast can cause thyroid hormone issues. Often short-term.
Which could be part of why you feel bad.
I've not personally experienced any contrast media so cannot tell you what to look out for. But didn't want to pass by without both pointing this out - and wishing you well.
When I was ill and undiagnosed, a neurologist said 'Well, you know. There's covid. That's making everyone worry about their health, isn't it?'
?
And that was their diagnosis. A neurologist diagnosed me with 'marked health anxiety'. Right, so in 30 minutes of checking my romberg signs, hitting my knees with a hammer and getting me to pinch my fingers, you've made a diagnosis of health anxiety.
Surely only a psychologist could do that?
Medical care is a stuck at around the 1970's. We live in a world where we trust our Doctors to know what's wrong and help us. But they don't always know. They're just people who studied medicine. So they're more likely to know where your pancreas is than you. But that's it.
Mental and emotional and nutritional health is not their domain.
File your case, please do. But if you can't get a below range test then you need to order DEPOT B12 from a German pharmacy and inject every other day into your arms or thighs for the next 3 months. It's the only way, sadly.
And you're right. The world is walking into a nutritional catastrophe of giant proportions, with so many people 'reducing' meat intake or going vegan. It's really going to hit us all and there's nothing our Doctors can do apart from run a blood test. That's literally all the help they can give.
"I’m also going to hit them where it hurts and am going to file a case of negligence once I’m. Hopefully on the road to recovery,"
I suggest getting copies of all your medical notes/test results before you do this.
I know people who started formal complaints who found that things were not in their medical notes that should have been.
Collect as much evidence as you can now if considering the possibility of formal complaints or legal proceedings in the future eg copies of any letters you've written or received.
When I had exhausted every chance of getting NHS treatment, I chose to treat myself.
Treating yourself can make it difficult to ever get NHS treatment.
Consider changing the setting of your thread to one for "community only" as threads from HU can appear on NHS website.
1) go to original post and click on "More" tab then "Edit"
2) scroll down original post to "Share", click on "Community Only" then "Post"
"You need to relax stop worrying go home and chill he said you do not have Pernicious Anemia do you understand???"
That seems very condescending to me.
Being confrontational is very likely to upset doctors.
I would be tempted to write a short letter to doctor who said that, quoting what they said and then explaining about family history of PA and including PAS info about PA running in families and maybe PAS symptoms list with relevant symptoms ticked.
With a diagnosis of health anxiety already I'm not sure they would take any notice of letters but it should at least get filed with your medical notes and would be written evidence that you raised the possibility of PA with them. Keep copies.
Did he explain why he thought you did not have PA?
Do you have gut issues?
Have you seen a gastro enterologist?
Maybe push for a gastro referral as they may be able to spot evidence of PA in your gut.
NICE - When to refer B12 deficient patients to neurologist/haematologist/gastro - enterologist
In future consider asking to record appointments citing any symptoms that make understanding or following conversations difficult eg memory problems, brainfog, fatigue etc.
Your neurologist may ask for more blood tests and if you are self treating this may affect blood results. Doctors don't always respond well to knowing patients are treating themselves but may be useful for them to know, in order for them to be able to interpret blood tests.
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