I'd like to know how many GP's or consultants have the foggiest about blood test results, other than looking at the range. And very often saying ''that's normal for you'' when its out of range. Unless its B12, in which case they'll turn blue and tell you you're in danger of dying unless you stop. Though never if your level is low.
My question is because as I try to make sense of my results. With NO medical knowledge. I realise it takes time to look at the relationships between variables. It needs alot of knowledge and skill, to connect the dots.
I wonder if they don't know either and can't be bothered to work it out, so its much easier to fob you off.
Interested to know other people's experiences and if you can say with the type of Dr.
Thanks
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Yahaci
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how many GP's or consultants have the foggiest about blood test results
Absolutely zero in my experience. That includes GPs, gastroenterologists, endos, neurologists. So many stories.... None that have ever been able to connect the dots. My naturopath, on the other hand, is pretty good! She looks free hormones (like Ft3/FT4), trends over time, and gives more weight to symptoms.
I think it's mostly both don't know & don't care. The ones who do care get overwhelmed when it comes to chronic, autoimmune, complex, multiple and/or rare conditions or those that present atypically. House MD they are not LOL!
Haha right? I also like the Good Doctor. How he sees it all in his head. It's kind of how i see things. Very visual. Makes you wish there really was a doc out there like that with all the answers.
I had a nightmare of an experience when I had many symptoms of B12 deficiency. I was told that my b12 reading was fine ,and everything was normal . This was 9 years ago before I knew that one could have a print out of blood results . I later found out that the test result was well below range
.A year of struggle and private medical expense followed . But I eventually obtained ( privately ) a positive Intrinsic Factor Antibodies test . Was allowed an injection every 3 months , which was insufficient. No amount of pleading had any result . The attitude of the doctor was dissmisive and arrogant . More or less accused of being a hypochondriac. Those were very dark days until I accidentally found the PAS and this forum . I now self-inject, but am left with permanently painful feet , but they are no longer numb .
But the situation has not changed 9 years on , and the PAS with chairman Martyn Hooper is still fighting for us . It’s a very difficult fight . I have my own ideas as to why this is so , but I should keep them to myself . But I’m sure that if P.A. were treated with pills from “ Big Pharma ” , we would not have this horrific situation . That’s what is missing in this equation - the link with powerful “ Big Pharma”. Enough said !
I'm sure you are right - because B12 was discovered so long ago and can be produced generically so has nothing lucrative to be gained from its production.
Wedgewood, you are always so supportive. I am sorry you have suffered so long and still have such pain in your feet. When I took too much Methyl last week, it did make a difference in my worst foot. It is still bad but there was a difference. when I started, I only had 1 shot a week for 3 weeks for loading doses, so I don't think I had the right head start, but when I accidentally used too much Methyl, I feel that was actually like a loading dose because some things did change. Things certainly got stirred up. What if you gave yourself another loading dose series? Does that even make sense? I don't know. I think my foot has Baxter's Nerve Entrapment. Do you think something like that is possible with your feet?
There is also the scary examples of B12 deficiency being mixed up with Multiple sclerosis, as is the case with my brother who is so severely disabled and in a wheelchair with so much pain who sadly has a very different brain or mind now and is quite nasty and paranoid. Dr Chandy agreed with my thoughts and tried to help. Hopeless.
Thanks for your kind words. It is so sad. I want to help both my brothers but not possible now. I can’t see one because of family problems with his wife. I’ve no idea about his b12 result which is highly likely to be low but he has M.S badly too and has a strong drug infusion treatment but is very disabled.
You remembered I asked for help on this excellent forum for my one brother but he doesn’t answer my phone calls now. I steel myself to visit him occasionally not knowing how he will be with me. He was better way back two years ago when I was giving him b12 injections but he put me off treating him for a few weeks, seemed to go into a strange aggressive manic episode again, culminating in a suicide attempt.
I am the lucky one I’m healthy, I only have under active thyroid - Hashimoto's which I self treat and maybe the b12d, not sure but I take a lot of Puretality B12 high strength tablets especially when I can’t remember things or get bad brain fog. I had such lovely advice on here especially from one wonderful lady ( wedgewood ) who gave me brilliant help with how to give the injections to my bro and loads of info from everyone. Where would we be without these forums. I know the Thyroid one has been a life saver for me and I’m truly thankful to both forums. X
I had a lovely dr in the beginning understandable even admitted she didn’t know what was best . Advised me to get a letter of consultant for more frequent injection after mine got stopped by another GP . 8 weekly not s problem at gps since . I also started menopause at 31 and after PA found and started treatment my thyroid stopped working after that . Until I started running and my hormones and thyroid went into over drive HRT was the course of many more problems . I’ve recently changed Drs big mistake . I got one of those nurses 🫣who doesn’t like the fact 8 weekly injections ( I si as stomachs issues got very bad ) no one had 8 weekly injections!!! I do neurological symptoms . She has now sent me a message for a blood test before my next injection as my levels where high a couple of years ago . Melt down from me and frustration anger . I’m now preparing to speak to a gp with question in who said she could do this and what they going to do about it . ( sorry for long story ) fingers crossed 🤞
the same thing happened to me after 40 odd years without a problem. After just having my b12 then routine blood test this go said no more b12 cause I was fine. I got to the point I thought I was going to die. Changed practice lovely doctor put me straight on B12 and 9 months later my PA is just starting to behave but now a nurse is trying to cut me down to 12 weeks from 3. I keep avoiding her but get anxious in case like yours she gets her own way.
With this forum behind us and the PSA we can all keep fighting. I wish you all the very best x
''I keep avoiding her but get anxious in case like yours she gets her own way''
This statement is very concerning, and too familiar. It reminds me of Oliver Twist.. ''Please Sir can I have some more?''
''More.....'' So we have returned to a Dickensian world.
A jobs worth dictates what you need. It's supposed to be a joint decision!
You are left scared and anxious, isn't that creating a mental health problem? Bet she's allowed to and only too willing to give you some anti depressants.
Yes and so annoying when they don’t realise the high level b12 blood test results mean nothing when you are supplementing B12 with injections or supplements!
Right now, I have no doctors i can turn to confidently for any answers. I feel very abandoned by my GP, who was the best i ever had, which isn't really saying much. But, I feel when i ask any doctors a question, that i don't feel confident in their answer. I feel I get better answers here. It has been a rollercoaster ride and I've been left at the top of the rollercoaster with no way down. I literally feel like I'm dangling precariously with no hand out to help me up.
My feet hurt so bad and my gut. And I feel I have nowhere to turn for help. I have a floppy gait. My legs are floppy and uncoordinated. My brain is not the same. I'm scared this is the beginning of dementia and am scared. And i have no one to tell me with confidence what's happening. But, I am not the same person i was mentally 5 months ago when this all was discovered after decades of decline. I have so many nightmare stories from doctors, it's incredible. So bad that I never want to go to another doc again. I dread the mind games and the disconnect and the condescending treatment. I just can't face another doc appointment that ends in zero answers and just more frustration and depression for me. I have zero faith in any doctors. This forum is my life line! So thankful.
Oh EllaNore, how awful isn't it. That could have been me writing this 6 years ago. It's terrible & it's scary & you don't know if you'll ever get better. I too had thoughts of dementia, even MS. I think for me the worst part of the rollercoaster lasted about a year. And unfortunately several more years until my energy levels caught up. Healing from B12D is so damn slow 😭 BUT possible! I'm glad you're here. This forum has been a lifeline for me too 😊
Awww Jade_s it IS very hard. And scary. They tested me for MS years ago. then said I had fibromyalgia. It is a relief to know things will get better. My energy level is zero. I feel like even the things that make me exited don't give me energy. Like photographing the fall colors. I haven't been well enough to go out and really photograph them in 5 years. I'm going to try this year. But I won't be hiking anywhere far or at all. Probably just from my car window. I am glad to be here with all of you!! You are all lifesavers. So glad your symptoms have improved. I hope they continue. 🦋🧡🦋
You've been through the wringer too haven't you! Mary has a good point - it's worth getting a proper thyroid test - first thing in the morning and fasting: TSH, FT4, FT3, and thyroid antibodies (TPOAb, Tg Ab), and post it here or the ThyroidUK group - the admins there are absolute stars in helping interpret thyroid labs. healthunlocked.com/thyroiduk
"even the things that make me exited don't give me energy"
I think many of us can sympathize with this one. It's soul-killing isn't it. I think this was the saddest part of it all for me. The physical symptoms are annoying but we can see them improving. But, for me, my energy levels were the slowest and last to improve (and they're still improving), and same for brain fog actually. I so *wanted* to do things, but just couldn't manage for a long long time. At one point even the things that normally interested me just didn't, I guess due to lack of energy. Thank you I also hope to continue improving ☺️🙏 I hope your recovery is back on track.
When you do manage to do some photography again, we'd love to see a sample or two ☺️ (no pressure though!!!).
Thanks so much Jade and Mary. I don't think I have been through anything you all haven't been through. We are all B12 Brave. I swear, reading everyone's plights.... my goodness we have all been through the wringer for sure! I truly never imagined I would hear these kinds of stories. I never imagined B12 d was this ridiculously difficult to treat, when it is actually the simplest thing to treat.
I have an oncology appointment on the 12th, I wonder if they would run some thyroid blood work. Or I would have to pay privately. I would like a CBC panel. Just to see where I am. I guess I need to find a new doc. I really dread it. I don't want the scrutiny.
I actually had a really good day today. I spent the entire day out and about! I didn't even take my B12 today because I felt good in the morning, so I just kept waiting to feel badly, but didn't. So I never took it. I have aches and pains and limp and waddle, but I didn't feel confused and brain dead. And I had energy. I just wonder if that accidental Methyl incident didn't actually act like a loading dose and give me a boost. I felt bad for a while but now that it is dissipating, I felt good today. Really the first in 5 months. I DID take some pics. and I would love to share some. But this isn't my post. I also got a B12 for life tattoo today that I designed around my wrist. LOL It would be nice to share when we have a good day. it is encouraging to hear there is life after PA. We could start a happy news thread LOL
This is the B12 for life tattoo I designed, and the tattoo artist put it on me. The vine of flowers goes all the way around my wrist. Breast cancer pink flowers with b12 red centers.
7+ years in and still improving! Well enough now from a B12 perspective that I am able to start to tackle some of my other health issues and so hopefully make improvements that way too!
EllaNore, Your are not alone, It is one hell of a scary journey, hubby in same situation. Fearing what's the future will be, why are the Doctors not helping, In pain constantly. I think Doctors avoid victims knowing they have indeed let you down. Its one year this month that hubby suffered, but still hopeful something positive is around the corner. Life will never be the same again, loss of trust in the medical profession, and months if not years of recovery. Jade six years in and improving ! Just have to keep🤞 and trust ourselves.
Sallyannl, You/We will never walk alone as long as we have this forum and each other. I am so sorry about hubby. I do hope there has been some kind of answers, or relief of some kind. You two have been through so much! I think that you might have touched on something. It is easier to abandon us so they don't have to look at their failures. Why can't they just learn with us? I often think to myself if my doctor even thinks about how I am. In a small town, you can't hide. I am sure they have seen me hobbling around town. I guess they get good at compartmentalizing. shutting off emotions. Afterall, its not them or anyone they love so just turn it off and move on. Big hugs Sallyannl and my best to hubby.
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...and we've probably hijacked this thread enough...
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