Hubby update. His heart is fine 😅😅😅😅 the abnormalities shown in the stress ECG we’re not replicated on the debutinine echocardiogram so all is well … so cardio consultant recommended hubby sees a endocrinologist to check whether his diagnosis of autoimmune thyroid antibodies could be a cause of his low B12 and vitamin D as untreated it could lead to complications with existing heart disease conditions.
GP reaction is STILL that B12 deficiency is NOT an issue and “these private” consultants just want our money … that’s hubby’s inference of the GPS dismissal and sneering at the consultants’ letters.
So still no vitamin D prescribed so we will have to self treat.
A flat refusal to refer to an endocrinologist- even though we have private insurance and cardio recommends that would be sensible.
A refusal to even test FSH, T3 or T4 for monitoring purposes.
A expressed opinion that needing B12 more than once every three months to top up is “ridiculous” and 201 ng/l was more than adequate … and as to me injecting every day well … eyes rolled and rolled and rolled.
So where does hubby go from here? We have private health insurance but cannot access it as the GP refuses to refer!!! Anyone else encountered a similar situation? What was the way forward? Any ideas?
Thank you all in advance - tomorrow is a new day and we battle on.
🤗🤗🤗
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Wwwdot
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I would suggest him SI every day! I have had the same level of b12 and I have been diagnosed with PA and had a heart attack 7 yrs ago. I was getting loads of chest pain short breathing and ambulance trips to the hospital just before my diagnosis. I had to have an angiogram done which looked fine but had palpitations on the treadmill. Anyway! All that resolved once I had regular b12. Good luck x
Thank you for sharing that experience and so glad it’s resolved for you. It’s so scary isn’t it being told not to treat when you just KNOW you need to treat to stay alive.
Absolutely! Somewhere along the way doctors appear to have disconnected from us sadly. It's hard to just take their word everything is fine when we feel it is not. I would be looking for another doctor. Sending you both warm hugs and healing xxxx
Unfortunately your situation is all too familiar. It makes me furious. Too many doctors have a ‘god’ complex. IMO you are left with only one option. As B12 isn’t a chemical substance ( it is only a nutrient) it is very safe. It is virtually impossible to overdose on it. And you don’t need a doctor to supervise any treatment - you can DIY. There is lots of advice on how to do so on this forum. I have PA but don’t need to inject as I find oral supplementation works great.
I could understand such an attitude if I was taking from the NHS without good reason but I am doing the opposite … self medication with B12 keeps me off antidepressants, improves my immune system, relieves my asthma, settles my heart rate so no more admissions so A&E with fake heart attack … talk about a rock and a hard place!
I am sorry to read of your experience. Make an appointment with a private G.P. then they can refer hubby to a private endocrinologist.
Unfortunately, the symptom of ‘rolling their eyes’ is a strong indication that the person is trying to find their brain. So, Wwwdot, be kind to them it is not their fault. 😜
Top marks you made me laugh! Just love that - I will remember that as I see lots of eye rolls these days … one day I may have the courage to ask “… looking for your brain?” 🤣🤣🤣 if only!!!
When 2 of my adult children have had severe health issues I have contacted private consultants directly on their behalves & they have seen them immediately without a GP referral.
Does your insurer provide a private GP facility who would refer if you found this necessary?
With many private health insurances you can make a private GP appointment through them who can then refer you to consultant. You don’t have to go through your own nhs GP. Or book another appointment with a different GP at your nhs practice. It’s quite unusual for a GP to not refer you if you have insurance. Say you will consider making a complaint if they don’t refer you particularly considering it’s been suggested by a consultant. Good Luck.
This is the third time that she has dismissed the advice of a consultant - first time saying that my hubby's B12 of 201 ng/l was normal even though the warning with the results indicated than anything below 200 ng/l AND neurological symptoms was to be treated as B12 deficiency. My husband is now on B12 via injection for at least a year as it could have been devastating as he has heart disease, and the second when hubby was referred to a cardiologist. Thankfully, we managed to get another GP to overturn her.
But this time, she seems to be digging her heals in and I think she has tightened her rein on her partners!
But thanks to all these wonderful suggestions from you guys, we will find a way!
Definitely keep pushing. You shouldn’t be made to feel bad because you want something checked out. Doctors are supposed to be supportive but many seem to have forgotten their Hippocratic oath!
Hello, what an upsetting impossible situation, and all too familiar. I can only suggest you try another gp. Go totally private, if you can. Hope you can resolve this situation. Best wishes.
I think the realisation that doctors can be both ill informed and arrogant was one of the the most significant and shocking revelations I have experienced. Maybe I’m naive but I always assumed a doctor would have an enquiring mind and a level of intelligence above most of their patients. 😕
Absolutely right, it's a horrible revelation and I experienced it many times - worse when I was 42 weeks, yes 42 weeks pregnant and desperate for someone to listen to what I was saying ... after an ICU for me and NICU for my son, I got an apology and a promise to listen in future.
But this is a different GP practice, different area of the country, so back to square one!
Hello my lovely, keep your chin up and don’t be afraid to self treat with already proven health strategies. Use D3 with K2 and don’t forget to add extra magnesium to balance out the extra calcium that will be absorbed with it. Take as much B12 as you feel like as it is nigh on impossible to overdose ha ha the very best of luck, but I’m guessing you are answering your own questions 😂💪
Thank you, it's hard keeping bright and your chin up isn't it but you are right, we need to trust ourselves more. Yes I am on D3 with K2, and magnesium so thank you and on three types of B12 going in the right direction with the support and encouragement of this group.
Thanks to you all, wish we could celebrate our comradeship with a knees up!
I’m not from the UK so I’m not sure how your insurances and/or health system works. However, nothing ventured, nothing gained. You have nothing to lose by contacting your private health insurance and letting them know what is happening with your husband and his GP. I also don’t see why you cannot contact a private practice doctor there and with your private insurance, make an appointment. One thing for sure, be very proactive. It’s YOUR health and body (your Husband’s) and there is a 50/50 chance this Dr graduated in the bottom half of his class. I wouldn’t stand for such treatment. Totally unprofessional. I was diagnosed with PA about 15 years ago. I self inject, generally every 4 weeks but sooner if necessary. I obtain my necessary products without a prescription. Don’t know if they will ship to the UK, the company I use is in Canada. I have a prescription, just don’t use it because they (the US pharmacy) dispenses in itsy bitsy vials that are useless. Hope this helps. Anna
You are quite right and I/we definitely will be very proactive! It is totally unprofessional. The surprise was that until we touched on the B12 nerve (pardon the pun) she was a very supporting GP. It's like a switch flicked inside her and she became a different person - all because we brought up the B12 issue!!
It's so lovely to hear of B12 veterans - I am still in my first year and I have learned so much, come so far, and made so many good colleagues on this forum - the whole diagnosis was worth it just for this group.
Yes , I had the strange experience of having an excellent relationship with my GP , but he changed totally on the question of Pernicious Anaemia and needed B12 injections . The change was honestly weird . I wish a GP would come on the forum and tell us why .
I do wonder if it isn’t the GP but the NHS trust policies that are causing the problems. I can’t imagine any GP wanting to fall foul of them with the threat of having to prove the prescriptive need for GP intervention-no matter what NICE guidelines are? The testing assays are not really fit for purpose and the level has been dropped recently at which they are allowed to prescribe? Again, the people who really govern the NHS and it’s procedures and protocols appear to be the drug companies and I guess they stand to lose an awful lot of money from their plethora of alternative treatments to treat the symptoms of B12 deficiency as opposed to the cheap, safe, effective but non profitable cure?! There goes my cynicism again ha ha however I have read Dr Chandy’s book ‘vitamin B12 deficiency in clinical practice’ and that was the very same ‘trust’ that I live in the clutches of 🥴
Defo the GP - old school, God complex in abundance. Never realised it before. She’s head of practice. So I am going to see the other three GPS one of whom spotted my PA and the other two are happy at the moment to authorise blood tests as requested by private consultants but that may change if Madam gets wind. But that’s a worry fir another day.
Agreed. It would be interesting to listen to a doctor explain what they do and don’t know about the condition.
It occurred to me that at the outset you could ask how much they know and if the answer is very little and they show no further interest you could save your energy for more worthwhile battles and find another doctor.
It’s always a matter of not wasting the doctor’s time, but what about OUR time being wasted and our health compromised while we try and navigate a way through the gaps in their knowledge!
So many GPs are happy to give us the run around seeing this specialist and that specialist, having this test and that rather than just having a conversation and hear the voice of the affected body. Many of us know our bodies really well and that should feature in our conversations.
As to how much GPs know well that’s interesting because my experience is that they THINK they know a lot but what they know is WRONG ie you can overdose, after loading doses you just need one injection every 12 weeks to be “fixed” again, you can repair B12 deficiency, once blood is full if B12 you can stop treatment … now the real challenge is getting them to listen to the right narrative, followed by the humongous challenge of getting them to admit they were wrong and change their views ( I just saw a 🐖!) 🤪🤪
But the fact is our fuel tank is broken - we need a continuous supply of B12 to function. And for some that means a mix of B12 types.
Thank you for your input, you are so right that our time is so precious especially when a lot of our time is taken up with daily health struggles.
Please don’t despair as we are all winners here despite the dreadful system. It’s just a matter of ducking and diving to stay on course with our treatment but under their radar!!
Had a blood test this morning authorised by one of the other GPs but my view is the less they know about how I am treating my PA the better - poor lambs gave enough on their plate 🤪🤪🤪
You just made me laugh there with your ‘ducking and diving’ saying-I once asked my uncle what he did for a living (4/5yrs old) and my entire family gasped as if I’d said something horrific? He just laughed and said he did lots of ducking and diving and dodging the dibble-I thought he must have been a very good swimmer- turns out he was SAS 😂😂👍
Feel a bit like a secret squirrel having to get my supplies from Germany in such a clandestine way too so SAS is a very accurate recycling of the initials- mission:- of national importance-save lives-top secret-need to know basis etc 😂👍😂
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Borderline B12 Deficiency with neurological problems
Advice needed re GP / B12 injections
