Doctor reduces me to humiliating tears over a simple blood test - yet again

General General TN & GPN (Old Site)
1

Hi, I am currently being treated with B12 injections for my Type 1 Trigeminal Neuralgia. These have worked exceptionally well, in that they 'cured' my pain to the position that I am now lowering those lovely brain-killing, multiple side-effect-laden drugs. So far so good. However, I've been following the B12 connection to try and find out where my 'deficiency' might have come from. Because I've suffered from gastrointestinal problems for a long time I am looking into coeliac disease and thyroid problems, both associated with Vitamin B12 deficiency, and both likely culprits with the symptoms I have had.

So.... I asked my doctor if I could retest for coeliac disease - it was tested in 2013 and found negative. My reasoning for this was because I discovered I have sub-par IgA. Not enough to be a deficiency as far as the British NHS is concerned, but low enough to be highlighted as low on my blood tests. This is significant because an IgA deficiency can cause a false negative for coeliac disease in blood tests.

You'd think this was all fairly straightforward, but no, my doctor isn't happy about retesting. He's spoken to a biochemist who assures him that my 0.73 IgA is normal enough (it should be 0.8) and it's only a deficiency if it is under 0.2. Yes, it's that great old chestnut - let's treat by the test results and the heck with the patient.

So we have a big argument, making me burst into tears and totally humiliate myself and making him cross because his surgery is now running late.

At the end of the day he DID agree to do the alternative IgG test, which is necessary for IgA deficiency but only after making it very, VERY plain that he doesn't approve and thinks I am "harming myself" by going on this "wild goose chase". That's why I broke down eventually. As soon as I even touch on explaining the psychological effects of my condition and the sheer misery it causes, having an incurable condition which is guaranteed to degenerate with time and no recourse other than drugs then brain surgery, I just fall apart. I swear I would sell my first born - if I had one - to be able to talk about the depression and grief TN causes me without getting teary. I hate this 'weakness' with a passion. I don't want to be seen as the neurotic, weepy woman with crazy health ideas.

Anyway, I came out of there so humiliated I keep alternating between rage at being put into this position over something so trivial (I actually offered to pay for the test myself, but it still didn't stop the hullabaloo) and a defeat so overwhelming I just want to kill myself. I am trying to get to the bottom of my condition but if I have to fight my doctor for every single test or experimental treatment then I will break under the sheer strain of it. I just don't have that stamina. I am experimenting on me. I'm the guinea pig here, and I am hurting no-one but myself. I could see all this palaver if I was asking for crack cocaine, but all I want is a coeliac test. Seriously. See what I mean? Back at outrage again.

Anyway, rant over. I just had to share all this pointless sh*t with someone who has been there. I swear to God, as if this illness isn't bad enough, this constant battling is bloody killing me.

1 Like
2

Hi Teeth. Do you mind if I call you that? I have, as usual, absolutely nothing of value to add to your discussion except to say that I read it and I sympathise. Doctors suck!!!!!! Especially when they perceive that you may actually be more knowledgeable about something than they are.

For God's sake, would it kill him to let you retest? Really?? What a knob. The fact that he finally "gave in" doesn't make him any less of a knob.

3

It will cause you the harm of a little prick to test your blood. That's it. Doesn't seem worth the fight on his part. I have found that women doctors seem to be more receptive to my participation in my healthcare.

I suspect that many men see us as emotional, pms, menopausal, etc.

Although it is not a perfect fit to your situation I am going to share some wise words of our own Red. "There is simply no ethical justification for off-loading onto patients the burden of proof for the origins of their pain." The quote speaks to believing the patient. Sorry your Dr. sucked. I left my neuro one day crying because he was so condescending. In my anger, I switched to a new neuro who is a buffoon and could never get my meds straight to the point of putting me into painful withdrawal, very irresponsible. I have since returned to the neuro who insulted me as at least he is competent.

4

You're employing the doctor to provide a service; he isn't, get a new doctor. Phone around and see if you can find someone who is skilled up in a more holistic approach to medicine. Pick your wellness team, don't settle for folk who aren't on your side. :)

5

This kind of sh*t just makes me feel like my future is grimm indeed.

I am not an emotional , PMS laden Woman , but what I would call a strong , self reliant Man , with a high tolerance to pain .

This condition is breaking me down by steps , pain is bringing me to my knees on a daily basis , my world is crumbling , and I can do nothing .

I am not emotionless - I am very empathetic to all that I read here .

I am scared to death of how bad this is going to get if I don't get some answers . The progression is ever more frightening -

I am now alone trying to keep up my household (My Mother passed away on Feb. 17th) her SSI was a big help to maintain the Home.

My income will just barely get the bills paid , If I don't eat.

I have got to work regardless of the pain and sleep deprivation , My bosses have little care for my problems , just want the job done.

My savings will bleed out in a matter of months , Extra Drs will only help bleed it out faster and will likely yield no results .

The VA is taking its time doing anything , I am still just waiting for a call to get in to a Neurologist .

Ya- life sucks.

6

im gonna find where i saw that news clipping about coeliac /thyroid

7

I have a link,but not 'the link' i saw today,but you can google it also ,but have a look at what it says

Celiac and the Thyroid | NFCA

8

Boy do I hear you. But, it's been so long that I have gotten to the point where I realize I do have to fight, I will have to keep fighting, and I have to pick my battles. Last week I suggested trying B12 shots to my main physician because MetanX ( a medicinal food combining several awesome Bs) used to help and now it's unavailable where I live. My doctor laughed at me, "why would that help?" she said. I explained about the MetanX (not prescribed by her) and she said, "oh you mean with the energy?" "I don't know, it seemed to help with the pain too," I replied. She said, "no that doesn't make sense, it's not worth it." So ok, I was suggesting several new things so I decided to hold onto that one for another appointment. Then she wouldn't even let me try a lidocaine rinse because it "didn't make sense" to her that it would help with nerve pain. Afterwards I spoke to my PT who said lidocaine can help with nerve pain! Sometimes even 10 minutes of relief is worth it - my doc has no idea. Another one I'll try later, now that I've seen that so many people on this site have found at least some relief with it too. You'd think she would be happy I'm not asking her to double my opiate pain meds and trying to find other solutions instead.

So it sounds like you picked a ballte and won - yes, in a distresing, frustrating fashion, but you are getting the test. Ha! The medical field doesn't like not knowing how to fix you easily, or letting you be your own guinea pig. They don't have the time nor motivation to research your condition like you do but they don't want you to think you actually know more about it than they do. Yet, they're not in your body, they don't know it like you do, and they have no idea what it is to live with daily moderate to severe pain.

Hang in there.

9

I would get your own new doctor

And consider a therapist that has grief, loss, chronic pain etc. Experience! It can be very helpful.

I had PTSD in a grocery store today in the cold isleā€¦ Its not in your head!

10

Why having gout can mean you'll end up with heart disease and diabetics risk their teeth falling out. How one illness can be linked to another | Daily Mail Online

This was the link,i know it says gout,but click on it,and it tells you what sometimes goes 'hand in hand' with an illness

11

Thank you, Catwoman. Ever since I read your reply my doctor is now officially a knob. Both me and my partner have taken to referring to him as the knob. I'm absolutely sure his ears are burning, and I have no remorse whatsoever. Thanks for cheering me up and helping me get him, and all his "ethics" BS into perspective.

catwoman said:

Hi Teeth. Do you mind if I call you that? I have, as usual, absolutely nothing of value to add to your discussion except to say that I read it and I sympathise. Doctors suck!!!!!! Especially when they perceive that you may actually be more knowledgeable about something than they are.

For God's sake, would it kill him to let you retest? Really?? What a knob. The fact that he finally "gave in" doesn't make him any less of a knob.

12

Thank you for sharing Red's words, Shadow. They are great, and I mean that. I've put them on my desk top as wallpaper just to keep them firmly in my sightline, so that when I have to go see him I can remind myself that I'm in the right to want to take the best care of myself I can.

I wouldn't mind if I was being 'difficult' and asking him to do the research, but I'm not. I'm doing it myself. All I'm asking is that he doesn't obstruct me and work against me when I'm trying to do the best I can for myself. To throw in my own paraphrased quote, Einstein said 'without imagination there is no science'. I just wish doctors could grasp that instead of only accepting those things that have certain results and judging their patients by test averages.

shadow2 said:

It will cause you the harm of a little prick to test your blood. That's it. Doesn't seem worth the fight on his part. I have found that women doctors seem to be more receptive to my participation in my healthcare.

I suspect that many men see us as emotional, pms, menopausal, etc.

Although it is not a perfect fit to your situation I am going to share some wise words of our own Red. "There is simply no ethical justification for off-loading onto patients the burden of proof for the origins of their pain." The quote speaks to believing the patient. Sorry your Dr. sucked. I left my neuro one day crying because he was so condescending. In my anger, I switched to a new neuro who is a buffoon and could never get my meds straight to the point of putting me into painful withdrawal, very irresponsible. I have since returned to the neuro who insulted me as at least he is competent.

13

Hi Smiley, yeah, I've been tolerating our 'differences of opinion' because he's 'allowing' me to have B12 injections - an unusual treatment for B12. But as you'll see, if you just put TN and B12 into Google, that it is NOT that unusual a treatment. They were experimenting with it way back in the 1950s and it seems to have been dropped then for some unknown reason. Not because it wasn't working - it was - but I suspect because anti-convulsants were discovered to work for TN around then and the pharmaceutical companies probably thought, "Wahey! Money. No need for cheap B12" and it all stopped. A great shame because I think in the case of classic TN, 'caused' by a vascular loop, there is definitely a B12/demyelination link.

The trouble is, if we all have to wait till some scientist falls over the real cause and discovers that B12 can cure TN if... whatever applies, it will be too late for all of us. The hell with that. I've found something that works and I'm going with it, wherever it leads me.

If I need to I'll just have to bite the bullet and find a new doctor who isn't so hidebound and terrified of the unknown.

Interestingly, when you say pick someone who is on your team, part of our 'lively debate' was him saying "belief doesn't enter into it, it's not relevant" and me trying to explain that it very much was. I don't expect him to believe all my theories and lines of enquiry - they are unproven, after all - but I do need him to believe that they are worth pursuing. And he doesn't.

Smiley said:

You're employing the doctor to provide a service; he isn't, get a new doctor. Phone around and see if you can find someone who is skilled up in a more holistic approach to medicine. Pick your wellness team, don't settle for folk who aren't on your side. :)

14

Hi Veteran, my heart goes out to you. I'm at least in a fairly optimistic, if frightening, place right now. I'm hopeful that this B12 induced remission phase (I'm too scared to consider it a permanent improvement or cure) will let me at least get the drugs right down, but you are still caught in the horrible place of staring at what looks like a dead end.

Here in the UK we have a national health service, which is free, but as you can see from my experience it has its limitations - not least of which is no control over what docs will and won't give you. I've always envied the way you Americans can pick and choose your doctors and specialists, but you have the terrible anxiety of having to pay for it. An awful consideration with a long-term illness.

I can only recommend you research your butt off yourself. That way you can save yourself a heap of money but, more importantly, you will feel more positive about your illness. There's nothing worse than a sense of hopelessness. It nearly killed me, the first six months or so of mine. I felt crushed and despairing beyond all belief. It's what makes me so mad about my doctor. He doesn't seem to realise how destructive it is to meet disbelief and obstruction when you are trying to make progress. He puts no value on hope whatsoever.

Take care of yourself and get reading. It will do you the world of good. X

VeteranInPain said:

This kind of sh*t just makes me feel like my future is grimm indeed.

I am not an emotional , PMS laden Woman , but what I would call a strong , self reliant Man , with a high tolerance to pain .

This condition is breaking me down by steps , pain is bringing me to my knees on a daily basis , my world is crumbling , and I can do nothing .

I am not emotionless - I am very empathetic to all that I read here .

I am scared to death of how bad this is going to get if I don't get some answers . The progression is ever more frightening -

I am now alone trying to keep up my household (My Mother passed away on Feb. 17th) her SSI was a big help to maintain the Home.

My income will just barely get the bills paid , If I don't eat.

I have got to work regardless of the pain and sleep deprivation , My bosses have little care for my problems , just want the job done.

My savings will bleed out in a matter of months , Extra Drs will only help bleed it out faster and will likely yield no results .

The VA is taking its time doing anything , I am still just waiting for a call to get in to a Neurologist .

Ya- life sucks.

15

Hi Barbara, thanks for the link! Yeah, I always say autoimmune conditions are like wolves, they travel in packs. When I first started investigating B12 deficiency, and found it was part of the 'pack', I was amazed at how many of these diseases seemed to follow on from each other. I'm a member of forums for all three conditions, B12 deficiency, coeliac and thyroid, and it's truly alarming to discover how many people have all three, and how often they have to fight with their doctors for more medication. It's almost a universal truth for the poor souls. All the doctors are measuring by test results and all these poor women are saying, "But my symptoms are back, I need more" and the docs won't give it because it doesn't meet the guidelines. It's a very real problem, with the patients suffering because the doctors can't get their guidelines sorted out. It's shameful.

I'm in the peculiar, and crazy, position of hoping I have coeliac disease because it would be such a simple solution - stop eating gluten, problem solved, but I do appreciate it's not likely and I'll just have to keep searching. But oh, can you imagine how thrilled my doctor will be when he is proved right and I will be shown to be a crazy woman with my mad theories, running up money on unnecessary tests? You should never feel like this when you are seeking medical help, but all too often you do.

barbara said:

I have a link,but not ā€˜the linkā€™ i saw today,but you can google it also ,but have a look at what it says

Celiac and the Thyroid | NFCA

16

You are very right, Christy, they don't like you doing things for yourself, and it's a weird and uncomfortable place that it leaves you. They are all 'Oh, don't read the internet, don't listen to anyone else, don't waste time on your own research" but then when you go to them for information they stonewall you. Not long before this meeting I had a consultation with my second neurologist (I made a formal complaint about my first, for all the good that did me). I asked him if he knew of any connections between B12 and trigeminal neuralgia; any conditions that might cause neurological conditions from a B12 deficiency. He said "No." I mean that's what he said, in total, just "No." End of discussion. He couldn't have dismissed me more effectively if he had sent me from the room with lines for my impudence.

So what do you do? Here's the demi-god of Trigeminal Neuralgia, a neurologist, and when you ask him for information, ANY information, anything you can work with, all he can come up with is "no." When I told him about my results with B12 he was patronising and disbelieving. He DID look it up in front of me and when he saw there were studies there on PubMed he was MOST surprised. You could tell up until that point he thought I was just some lunatic who had been haunting alternative health sites and come up with a mad scheme, which had doubtless produced a placebo effect (on TN? Yeah, right.) My doctor thinks this B12 effect is all placebo. This despite the fact that he's the one doling out horrendously strong anti-convulsants to me.

The scary thing about this is these are highly educated men. You'd think they'd listen to what falls out their own mouths. B12 is having a placebo effect on TN, when anti-convulsants don't work? Are you mad?

Ah well, they're the 'experts' and we just have to work round them as best we can. But it's a bloody tragic waste of everybody's time and effort. Think how much more we could get done if we actually worked together

christyr27 said:

Boy do I hear you. But, itā€™s been so long that I have gotten to the point where I realize I do have to fight, I will have to keep fighting, and I have to pick my battles. Last week I suggested trying B12 shots to my main physician because MetanX ( a medicinal food combining several awesome Bs) used to help and now itā€™s unavailable where I live. My doctor laughed at me, ā€œwhy would that help?ā€ she said. I explained about the MetanX (not prescribed by her) and she said, ā€œoh you mean with the energy?ā€ ā€œI donā€™t know, it seemed to help with the pain too,ā€ I replied. She said, ā€œno that doesnā€™t make sense, itā€™s not worth it.ā€ So ok, I was suggesting several new things so I decided to hold onto that one for another appointment. Then she wouldnā€™t even let me try a lidocaine rinse because it ā€œdidnā€™t make senseā€ to her that it would help with nerve pain. Afterwards I spoke to my PT who said lidocaine can help with nerve pain! Sometimes even 10 minutes of relief is worth it - my doc has no idea. Another one Iā€™ll try later, now that Iā€™ve seen that so many people on this site have found at least some relief with it too. Youā€™d think she would be happy Iā€™m not asking her to double my opiate pain meds and trying to find other solutions instead.

So it sounds like you picked a ballte and won - yes, in a distresing, frustrating fashion, but you are getting the test. Ha! The medical field doesnā€™t like not knowing how to fix you easily, or letting you be your own guinea pig. They donā€™t have the time nor motivation to research your condition like you do but they donā€™t want you to think you actually know more about it than they do. Yet, theyā€™re not in your body, they donā€™t know it like you do, and they have no idea what it is to live with daily moderate to severe pain.

Hang in there.

17

Yeah, Kc, it may come to that yet. I don't want to jeopardise my B12 injections, for obvious reasons, but it's getting that I'm anxious for a week before I have to go see him, and I'm arming myself to the teeth beforehand like I'm going into battle. Not to mention the fact that I feel so bad about myself, on account of having to repress what I REALLY want to say, to protect his ego, that it's becoming not worth it. Still, I shall soldier on and see how things go. You never know, God might love me and make me positive for coeliac disease (how absurd is that, wishing you HAVE a disease?) and then I can laugh in his face. (The doctor's, not God's!)

Kc Dancer Kc said:

I would get your own new doctor
And consider a therapist that has grief, loss, chronic pain etc. Experience! It can be very helpful.

I had PTSD in a grocery store today in the cold isleā€¦ Its not in your head!

18

I'd like to add to this discussion. If your doctor CAN'T hear you, it's because he is not interested in hearing you. ALWAYS REMEMBER AND FEEL FREE TO REMIND THEM: THEY WORK FOR YOU!

I often wish that I could put the doctor in MY body for just one day! I think it would give them an ability to HEAR their patients. I have FIRED many doctors for NOT listening to me and very well be at the point where I will be firing my rheumatologist on my next visit. My primary case physician has said he will talk to her, they went to med school together, but if I find that she is still not listening after that, I will be moving on. I'm sick of telling her the same thing over and over and being blown off.

I would also like to ask about the B-12 deficiencies. My PCP has had me on supplemental B-12 for quite a while now due to a deficiency that he said showed up in my last blood test. It was apparently quite low. Same thing with my Vitamin D. Because my TN2 is becoming worse and worse, I will try anything at this point. Perhaps that is contributing to the progression...? I also have auto-immune problems. I also found that my TN really started to progress after I was treated with Chemo and Radiation for breast cancer and have wondered if the treatments could have pushed things, after-all, I was thrown into instant menopause after one treatment of Chemo. I was only 39 at the time.

19

Thanks for that, Barbara - an interesting collection of connections. If only someone could compile one for TN! I find it's one of the biggest problems in researching it. I often put up posts on here, looking for others with certain conditions or health problems, but I never find anything consistent. I wish someone could do a comprehensive survey of TN sufferers to see what ailments and health histories they have in common - we might actually learn something useful. The trouble is there are not enough of us!

barbara said:

Why having gout can mean youā€™ll end up with heart disease and diabeā€¦

This was the link,i know it says gout,but click on it,and it tells you what sometimes goes ā€˜hand in handā€™ with an illness

20

Oh God, yes, Cathy, you absolutely should push for B12 injections. If you have actually had a B12 deficiency show up in blood tests, this means you are WELL below the acceptable limit. Why your doctor didn't give you shots for that, I do not know. The lower limits set in the UK and US are both far too low and experts in B12 deficiency believe they should be much higher. Get a copy of your blood tests and check them against those in the book "Could it be B12?" I'll get you the authors names if you can't find it. It's a great book and will open your eyes to any other problems you may have had that might be connected.

You have a neurological condition in TN. If you have a B12 deficiency then the treatment SHOULD be B12 loading doses, NOT oral medication. It's not nearly strong enough. Time is of the essence for you. The longer they leave it, the more permanent the damage.

Low Vitamin D is another sign of malabsorption so you could have some condition like coeliac causing the problems. Either way it sounds like you could do with some testing. The first thing you need though is to get your old blood tests and compare them against the more accurate versions in the B12 book. Then go on from there.

And you are so right, a day suffering just the TN medication would be enough to buck most doctors up, never mind subjecting them to the pain and fear of the actual illness!

Cathy in MD said:

Iā€™d like to add to this discussion. If your doctor CANā€™T hear you, itā€™s because he is not interested in hearing you. ALWAYS REMEMBER AND FEEL FREE TO REMIND THEM: THEY WORK FOR YOU!

I often wish that I could put the doctor in MY body for just one day! I think it would give them an ability to HEAR their patients. I have FIRED many doctors for NOT listening to me and very well be at the point where I will be firing my rheumatologist on my next visit. My primary case physician has said he will talk to her, they went to med school together, but if I find that she is still not listening after that, I will be moving on. Iā€™m sick of telling her the same thing over and over and being blown off.

I would also like to ask about the B-12 deficiencies. My PCP has had me on supplemental B-12 for quite a while now due to a deficiency that he said showed up in my last blood test. It was apparently quite low. Same thing with my Vitamin D. Because my TN2 is becoming worse and worse, I will try anything at this point. Perhaps that is contributing to the progressionā€¦? I also have auto-immune problems. I also found that my TN really started to progress after I was treated with Chemo and Radiation for breast cancer and have wondered if the treatments could have pushed things, after-all, I was thrown into instant menopause after one treatment of Chemo. I was only 39 at the time.