I have hypothyroidism and Pernicious anaemia. And because I looked at my latest blood results (which I am entitled to do), he is not going to give me my B12 injections until I have a blood test every time. What a waste of money. He is being vindictive because I checked my results, which are abnormal, but he is still doing nothing. He is as useful as a chocolate fireguard.
My levels have always been high, but I still have PA. It won't go away, and he is never going to give me my B12injections. I will be very ill, and he must know that.
Any advice please.
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Mannequin18
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Hi, thank you for your reply. There are several other doctors there, I will see them in future. The doctor who is being a pig, is like a child having a tantrum.
I will join PA properly, because I think I will need some help.
I need my injection now, my bones are hiring already. I should have had a B12 on the first of April, but the nurse just brushed over my arm with what I thought was a piece of paper. So if I have to wait another 3 months, then have a blood test, but he won't give me the B12, because my levels have always been high, he knows that. He also threatened to look at my thyroid levels, because they were a bit high, it was like a veiled threat.
He’s so wrong - about people overdoing their vitamins. As I’m sure you’ll have gathered from the other forum, some people need daily B12 injections. Until a few years ago fortnightly was commonplace. Now everything seems to come down to cost, leaving many people suffering.
Because blood tests don’t tell the truth when you inject B12 (or indeed take it by mouth). Your blood levels can be high (almost certainly will be, in fact) but it doesn’t mean that it’s available for your body to use.
Unfortunately many doctors don’t know this these days. They just aren’t taught the facts about PA during their training.
😬 You really think he’s being vindictive because he saw that you checked your own personal results? Really? Is this a new low? I didn’t know GPs had that much time n their hands? When I was changing/challenging treatment I checked them 20 times a day. Also I was interested in all the stuff on there from 1979 when I got run over and broke my arm, got run over again, got my tonsils/adenoids out, broke my leg ect ect it’s a trip down memory lane for me 😂
I’m genuinely intrigued how you know he think he’s upset about you checking your results?
What were your results? And I wouldn’t worry about having a blood test each time. At least you’ll know if the injections are helping?
I know he was upset. He had the results on the computer when I went in, he didn't know why I was going, and he has never had my results up before to discuss them with me. And I don't want a blood test every time, my levels always show high. And once you have PA. You don't need testing again, because you will always have it. He was very awkward. He didn't address other issues, but then he never does.
Hi, before I found a doctor who understood how autoimmune conditions work, I was suffering with pernicious anaemia because every time I had a blood test, I was told I did not need injections, because my levels were high. Now they are 2000. But that is quite normal when you are having injections of B12.
So B12 was high? How do you get a diagnosis of PA? And what’s happening if you have high b12 but then you get injections too? (Looking our for anything that’s applicable for my daughter, her B12 was over range)
Hi, high levels could mean that your body is not absorbing the B12. She would have to be tested to see if she makes intrinsic factor. That you need to absorb B12 from your food.
I d produce this, and have to have injections.
Good luck with your daughter.
You can't have too much B12. It's water soluble, and what you don't need, you body will eliminate.
I was found positive for the antibodies that cause pernicious anemia and they said because I have Autoimmune thyroiditis and Graves’ disease it can come up as a false positive.
I just look up PA through PA society and this is what they say about B12 levels... I was curious.
A low level of vitamin B12 in the blood indicates pernicious anemia. However, a falsely normal or high value of vitamin B12 in the blood may occur if antibodies interfere with the test. Your homocysteine and methylmalonic acid (MMA) levels. High levels of these substances in your body are a sign of pernicious anemia.
Many doctors are really idiots these days. But what I dont understand is if you dont absorb b12 injections then why do you want to get them anyway? why not get high dose absorbable form of b12?
i thought you said you were gettjng the injections and but you stil havel PA since you don't absorb well? so than if its not helping why get more injections?
Having B12 injections isn't a cure for PA. There is no cure for PA. Injections are required if people cannot absorb PA from the gut. Having injections will cause high levels of B12 in the blood, but it doesn't necessarily mean that there is a high level of B12 in the cells of the body.
Sadly, blood tests for checking levels of B12 once you’ve been prescribed injections aren’t a lot of use— they don’t tell you anything about how well B12 is being absorbed.
But if it's not being absorbed then surely you will have high levels in your bloodstream so what's the point of putting mote B12 in your body via injection then?
I’m not an expert on this stuff - that’s the limit of what I know. I didn’t say B12 wouldn’t be absorbed, just that you can’t tell how well. Absorption is not as straightforward as it sounds.
I'm no expert either! But if B12 is the marker in the bloostream and that is what they measure maybe theres another marker that determines how well it's being absorbed? I don't know
I'm interested to know where you and mannequin18 are looking individually to see all your medical history and blood test results? I'd like to see a more indepth view of my own medical history. I have patient access online but it only tells me about my recent medications/appointments upcoming and past plus ability to book an appointment, but nothing more. Where do I go to view such in-depth personal medical history? Thanks.
You have all my sympathy. Sadly there are doctors out there who dont like patients being actively involved with their treatment. They are the ones to avoid. You probably wont be alone & there are probably other patients who avoid that GP too!!
Its a nonsence to keep repeating b12 tests when you are prescribed b12 injections. Sigh!! It will tell the GP nothing & is waste of money... so see someone else -sus out who is the most enlightened & willing to help...& avoid those who arent. Lifes just too short!
True Mannequin 18. Best to avoid him/her. Im afraid. I have a simular nasty one in my surgery who once told me my blood test said I was diabectic. When I in shock asked him what happens now he said nothing for the next four months! When I asked why he said Nothing cos Ive spent too much bloody money on you!! I wasnt diabetic, my blood test was perfect, he was just in a bad mood as Id politely defended my thyroid blood test results & didnt like it. I refuse to see him now! The doc you saw sounds simular. Avoid like the plague!
"sus out who is the most enlightened & willing to help...& avoid those who aren't."
Ask the receptionist for advice. You could say that you and "Doctor X" don't seem to get on, but try not to complain or criticise or they might put you down as just another difficult patient. A bit of a personality clash is acceptable enough, (happens to us all), and would probably be OK to admit.
Thank you for your reply. I don't mind injecting. It doesn't look that difficult. And my daughter is a nurse, she could show me. But where would I get the hydroxocobalamin from? If anyone can point me in the right direction, then I will never need to have them done at the surgery.
I buy 1mcg 2ml ampoules of b12 over the counter from Spanish pharmacies (or get travelling friends to do so, it’s cheap - about 3 euros for 5 ampoules)
It’s Cyanocobalamin, so has a different treatment protocol to hydroxy, once a month vs once every 3 months.
The supplies for injecting are available online in the uk. Try medisupplies.co.uk. You’ll need needles, syringes, alcohol cleansing swabs and a sharps bin (I use insulin syringes which are 1ml capacity and they have the needle pre-attached (so I do 2 injections with the 1 ampoule) The reason for this is that the needles are very thin and shorter than used for IM, so it’s a deep sub cutaneous injection. I’m a wuss and a bigger deeper needle used on myself makes me feel a little weird!)
I’m not diagnosed with PA, but I’m hypothyroid, had low b12 and symptoms and my GP was being an arse. I just wanted to eliminate possible causes of symptoms and I find the b12 injections helpful.
There is a page on the PAS website for Docs and other medics to understand more. I would print it off for this difficult and ignorant GP. With PA injections are for life. Also the Guidelines from the British Haematological Society for Folate and B12 Deficiency will be sitting on his desk ( you can google them - sorry cannot do links on my phone 😊 ) Within, it is clearly stated further testing is of little value once supplementing. This Doc needs a good slap ....
Not yet, I have been so busy. Taking my husband for various appointments. I only get time at night to check my messages, and I need to go on my computer to be able to print anything. I should have some spare time tomorrow.
I had a letter from my GP, very apologetic about the misunderstanding. Saying he will look into high levels of B12, and if it is safe to have them, then he will give me my B12 more frequently as I need it.
But it is frightening to think that he does not know.
At least I got acknowledgment.
I will still download the information on the PAS, and make sure I take it with me.
That’s a really good outcome! So glad you persevered! I honestly don’t think that’s it’s frightening that the GP doesn’t know off the top of his head about B12 or PA, they have to have such a broad general knowledge of do much. What IS commendable is that he has stated he’s unsure but that he will find out. That’s what we need with our health practitioners.
Good luck and maybe I’ll talk to you in the future if I need support with PA for my daughter 🤗
Yes, I think you are right. I was just so upset at the threat of losing my B12. I was very angry and not looking at it from anyone's perspective but my own.
I realize that they have to have a broad base knowledge, which I did say to him. I wasn't rude, that would not be right.
But all is well now. Thank you, and good luck for your daughter.
Some drs are so nasty and he probably got you when you were feeling particularly rough.i can't add any more to what everyone else has put. Please let us know how you get on.
I have already sent letters to the practice manager at the surgery, and to the complaints team at the NHS. Hoping for replies, but expecting nothing. But if I get no response, I will send the same letters to both until I get a response.
It took me over a year, 4 different doctors and 5 different dentist to find 2 Healthcare professionals who would stand up to OHP, challenge my previous Physicians findings and help me effectively. I love the 2 dentist who are over 60, one is a dentist and one does the technical side like x-rays Etc. The jury is still out on my very young doctor but she has sent me to experts she had to recommend for the OHP to pay. She continues on the thyroid situation to want to fit me in a box. She started at this office almost a year ago when I started going there so I am being a patient Patient. Time will tell. It's in God's hands. What exactly is PE? I get itching deep inside my ears and sneezing often.??? I am on 50 mg of Levothyroxine a day. Once a week I skip my daily dose to get some relief.
How long have you been on 50mg of levo. That is usually just a starting dose. Your itching ears and sneezing sound like you are undermedicated. It's not a good idea to skip a dose. You need to see your doctor again.
I am dairy and gluten free and have noticed if I have dairy by accident ( or by choice, once in a blue moon) my ears get so itchy immediately. I can’t trust myself with a Q-Tip because I would probably scratch the inside of my ear until it bled! Before I went dairy free, I always had itchy ears and it stopped when I took dairy out of my diet. Now, the occasional dairy I consume immediately causes them to itch again.
So the itchy ears may be from a food intolerance or sensitivity that’s causing inflammation in your ears. My son and I both suffer from itchy ears, stuffed up noses and increased phlegm after eating dairy.
I self inject as I need them more than every 3 months. As someone else said, no point in blood tests. All that will do is tell you how recently you had the injection! I get it from Germany and inject into my stomach. It’s easy to get the syringes online etc too x
as the behaviour of the GP appears to be in contravention of provision of data protection law. You should not be penalised for exercising your right to access your personal information
It is difficult to see how the GP could justify accessing your records, or the meta-data about your records, which would allow him/her to find out that you (Mannequin18) have accessed them.
I agree with Gambit62, there would appear to be data protection issues here.
(I assume you didn't go in and say "I accessed my records"!)
No I regularly check my records on line. I had been doing so on the morning before my appointment. When I went into the surgery he had all my records on his computer, he didn't know what I was going about. And he was very brusque. Didn't listen to why I was there, got up walked me to the door telling me that he was going to not give me my B12 because my levels were high, and was going to test me before every injection, and that my TSH read high and he might look into that. In other words shut up and go away. My B12 levels have always shown high, but I still had all the bad symptoms.
My doctor always has my records up when I go in. Surely that’s good practise?
It sounds strange that he is prepared to spend his budget on blood tests if you think he is being deliberately difficult. Also that he’s prepared to investigate your high TSH further. Maybe that’s why you’re feeling unwell? I don’t think it’s a shut up and go away from what I’m reading.
Yes it sounds like his manner was severely lacking. Maybe he’s just had to tell the previous patient they’ve got weeks to live or something. Maybe he’s not well himself. (I once had a GP suddenly clasp his chest, leant over and went all sweaty, but carried on and insisted he was fine.. I told receptionist on way out)
I’ve got worked up myself sometimes when someone hasn’t handled a situation courteously and then realised afterwards I’d read too much into it. I think the evidence is that he is going to spend his budget testing you and is investigating further and that is a good thing. Perhaps more injections is not the answer and he may help you feel better another way.
Anyway good luck on your journey to good health. As others have said, you could change doctors.
I’m sorry to hear your Dr is treating you like this I would speak to the practice manager or see a different Dr at the practice . Failing this I would either make a complaint about his standard of care or change GP .
Something I have noticed Drs don’t like their patients to view online results or notes I think they feel threatened but withholding medication is another level altogether!
I am like you, have thyroid and PA/B12 deficiency and I am so alarmed and angry at what you have had to put up with - You need to report the GP to the Practice Manager, in the first instance and ask to see someone else in future. His threats are not acceptable or professional. Even consider threatening him with the medical board for his conduct.
I have raised complaints at my late sisters surgery and the hospital, when I went to see a Endo. She denied the allegations against her and they did take her side.(surprise) but I did get a letter semi apologising and I am still on my medication for the T3.
These professionals are not God, they do not diagnose they have opinions, with little knowledge it would seem in a lot of cases. I think they failed the empathy part of their medical degree!
They also fail to remember that if everyone was healthy and did not need medical intervention, they would not have a job!
I will get off my soap box now, it just makes me angry when I hear these horrific and shocking stories of what people have to put up with.
I wonder if doctors have been issued a new set of guidelines 're vitamin B12 injections. My vitamin B12 gives a low result very 3/4 years and previously I had a series of B12 injections and everything was hunkydory. This time someone called from the surgery to say I needed to eat more vitamin B12 rich foods and possibly buy a B12 supplement and then repeat test in three months.
Obviously if you're absorbing the B12 even poorly the levels in your blood will come down, they wouldn't remain consistently high when you aren't putting more in unless you had something going on with your liver like hep or cirrhosis for exmple or several other possible issues. I don't know what else you've got going on or are aware of.
I'd get the blood tests as they might lead to discovery of something else which is the missing piece of the puzzle.
Your right, but I don't think my GP even knows anything about it. He said I would be better off coming off it altogether. That sums up his medical knowledge.
All the previous blood tests I've had, he has never acknowledge. Only last week he had on his computer screen, what I had been looking at that morning.
I think this is an unfair viewpoint. This forum wouldn’t exist if everyone were getting adequate care. If you are getting such fabulous care and can word your response to your GP in such a way so that you can manipulate them in to getting what you want then why are you here? The Drs I see are fecking idiots! And I’m sick and tired of trying not to hurt their professional pride. The relationship between patient and medic should not be an authoritarian one sided relationship we’re we don’t have any say in our health. If we have the time to research our condition and the DR doesn’t why are they so outraged by this? Everyone should take ownership of their health, it’s my body, my mental well being any Dr who has me for a patient should feel invigorated that I am being pro active!
There is lots of good info and advice on the b12d .org website including detailed instructions on how to self-inject both hydroxy and methyl forms of b12. b12d.org/faqs They used to provide the b12 as well but aren’t able to now but will tell you where you can get it in uk. 😊
Ok firstly you must have your bloods checked and secondly if a GP didn’t give you items you require for your health which were proven to be required and purposefully with-held them, he’d be struck off !
I used to need B12 injections but all of a sudden my B12 started to hold by itself and I no longer needed it., infact I had far too much and had symptoms because of it - they will be keeping an eye on your upper limits through the essential blood tests which are not a waste of money.
The blood tests will tell them how much you need prescribing in future.
Maybe if your relationship with your GP has broken down so much you should ask to change Gp to another at the surgery and forge a working, trusting relationship with them ? Ask questions and be open to the answers - even if they aren’t what you want to hear !
Go to A&E and explain or speak to your Dr again and failing a satisfactory outcome contact your Patient liaison officer at local clinical commissioning group and complain. But why can't you have blood tests as GP suggests?
Having a blood test for B12 whilst receiving injections will show an over range result or high in range. GP then withdraws treatment if lacking PA knowledge. With PA - injections are for life. B12 is needed in the cells NOT the blood.
My mother has Pernicious anaemia for years, every 3 months she needs the B12 injection administered by her GP. Your doctor is breaking good medical practice towards its patients would change him/her as they have an attitude that will not help you longer term. They need to be reported we have such a system under the NHS here in the UK.
Unfortunately I have encounted the same attitudes with GPs, only my GP read my results wrong and told me to stop taking as many levothyroxine, which I did as I was naïve in those days. I ended up very poorly and I looked this website up lucky I did, I posted my blood test results on here and then went straight back to doctor with evidence and told him he ought to go back to medical school. I refuse to see him at practice since.
Thank you for posting this my Gp is as much use as an chocolate egg left in hell..quickly..for 5 years or more I told him I had auto immune prob graves..he sniggered and said no its the menopause this has gone bk and forth for years and yes her now and again took blood which was always a fortnight later and either at 3 or 5 in the evening always saying my levels are fine..then last September 19th I won't forget that date I was again having bad symptoms as i ad been for 5 years..I angrily rang my surgery for an emergency app as my tremors were really bad...and after getting past the gaurds (receptionist ) I finally got blood off that day...which showed hyperthyroidism turns out to be graves..as I'd been saying for all those years..to me this is unforgivable when I managed to catch my doc and I said we'll i told you I had an auto immune illness he put his head down and said nothing childish..he never had the balls to apologise for keeping me ill for over 5 years and now he thinks his some god for getting me diagnosed laughable...Ilike u my Gp is useless. .I'm now trying to recover from my total thiyroid removal..I have developed a bad case of tonsillitis doc came...not my doc but another from my sugery..diagnosed tonsillitis I needed some more pain Meds as I was running out..I gave him the box to copy on to my prescription...well guess what he fgot to put the pain Meds down..so now I'm left in pain waiting for him to call me bk because he fgot to put my pain Meds on my prescription...I have to keep on top of my pain..well that's not happening as I told him I only had 4 left now none...what a marvellous NHS we have..left hands don't know what their right hands are doing..and no wonder they are hemoraging money I have been given Meds I can't take..in the bin now.their ia so much wast in the NHS. .
I am so sorry the way you are being neglected. I am in my 70's and have had only 2 what I call propper doctors in all those years. That's saying something. They don't seem to be accountable for their actions. They do think they are God's gift. I wish them all the autoimmune diseases that are on this earth. That is the only way they will realize that autoimmune conditions really exist. All the best, hope you get your pain meds soon, and wish you well.
You to mannequin18 by the way I'm 57..yes you have the right idea let them have auto immune illness see how they like it...the fat wage would go that's for sure..I can't work now due to my graves and other illness the bedside manner is no longer their..your just a number now...shame on them..
Change your doctor asap if you can or contact NHS England and ask for advice. Do not accuse him of anything to NHS England but explain the situation. I did that and they contacted the GP practice and I had practice manager ring me up. Remember "the wheel that squeaks the loudest, gets the most attention". Doctors should be held accountable for their actions and are actually getting away with so much at the moment. GPs seem to be using ways to get out of actually seeing patients and then A and E become overloaded.
Thank you. You are so right. I am trying to work out the best way to proceed. I have had a great deal of help on this forum, but I just have not had any spare time to take it forward. My husband has Altzheimers, and 3 days this week are being spent at the hospital. It's hard to fit it all in.
I see how you are in a difficult situation. GPs do not seem to realize the pressure some people are under. They only see us in the practice and not outside with stresses and strains of life.
I am giving him one last chance to sort out why my levels are high. He seems to think that there is a problem with that. He said he is going to look into it. I hope so. I have an appointment in 2 weeks. Fingers crossed.
It's so important to trust your GP. That would destroy my trust that they had my best interest at heart. So I'd have to find a new GP either in the practice or go to a different one. Health problems are difficult enough without the people who are supposed to help doing the opposite.
Yes I totally understand. I'm at a similar point with my GP. I also had a really difficult time having my underactive thyroid diagnosed. I could see my tsh levels rising every time they were tested yet was told they didn't need to test again despite me feeling awful. I eventually got another test and low and behold I was outside of the normal range. Seems unfortunatly common from what people on here say. It can feel like you're fighting a losing battle. But this behaviour feels quite vindictive and not what you want from a GP.
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Spoke to my gp re-private results. I could cry :(
GP wants to reduce my Levo...🙁
