Doctorsrcrap: can't cry and frustrated

[Doctorsrcrap]

My actual GP refuses to treat me for b12. Says its all in my head. I had to go private to a specialist to get the diagnoses. He csnt treat me because we are opposite end of the country. So he has told me self inject. 

The NHS is ****. If they would just recognise the problem I wouldn't have to do it myself 

[Tom2020]

16 hours ago, Doctorsrcrap said:

My actual GP refuses to treat me for b12. Says its all in my head. I had to go private to a specialist to get the diagnoses. He csnt treat me because we are opposite end of the country.

Could you tell us:

- What your B12 level is?

- What kind of specialist you saw?

- Is B12 supposed to help your pain?

[Doctorsrcrap]

Active b12 level 48. 

I don't know if I'm allowed to recommend specialist. Is b12 something you have a problem with? 

Yes the b12 is to try and help the muscle and nerve pain 

[Tom2020]

10 hours ago, Doctorsrcrap said:

Active b12 level 48. 

Thanks. I have no medical training but looking on wikipedia"s B12 page: "Diagnosis is supported based on vitamin B₁₂ blood levels below 150–180 pmol/L (200–250 pg/mL) in adults." so 48 sounds very low. Does your GP not agree that's very low?

 

10 hours ago, Doctorsrcrap said:

I don't know if I'm allowed to recommend specialist. Is b12 something you have a problem with? 

My doctor says I'm slightly deficient at 169pmol, but I'm not looking for a specialist. I was wondering what kind of specialist you saw. A naturopath? An endocrinologist? I don't know what kind of doctor specialises in vitamins.

 

[Doctorsrcrap]

@Tom2020

An anemia specialist.

Serum b12 numbers are meaningless. But your number is very low. Actuve b12 is more accurate but NHS don't run it. You need a private test.

If you don't have an absorbtion issue then I imagine buying a sublingual b12 supplement would raise your levels.

Do you have good iron and folate and vit d levels? Are you vegetarian?

Do you have symptoms of b12 deficiency? 

[Tom2020]

Thanks @Doctorsrcrap. I didn't know there was a different test for active B12 but I see I can get it here privately.

 

I have a few symptoms of B12 deficiency but they may be (mostly) caused by ME. I also have low vitamins D and C and slightly low A all because withdrawal made me react badly to supplements and I have a very restricted diet. I'm working on improving my D levels, then I'll work on the others. My iron is fine but never had folate tested.

[Tom2020]

So your anemia specialist thinks B12 supplements might help your muscle and nerve pain but your GP does not? Is it malabsorption in your case?

[Doctorsrcrap]

The specialist wants the GP to investigate why I'm not absorbing things yes. 

Whether they will or not is another matter. I csnt afford to privately keep testing things though so I really need the GP to help. 

 

[Catina7]

4 hours ago, Doctorsrcrap said:

The specialist wants the GP to investigate why I'm not absorbing things yes. 

 

Normally a GP will listen to a specialist.  If they don't, then find another GP fast!  

[Doctorsrcrap]

I just don't think I csn carry on like this. Being in so much pain and having to fight to be heard just to be told I'm in denial about my mental health and stop refusing my antidepressants. 

I've got to wait for all my b12 stuff to be delivered and then it can take months to reverse damage. And we don't even know for sure it will help these problems and I'm sorry I'm just not coping very well

 

[PearlsMom1979]

I have no advice but I am so sorry you are going through this.

Praying for faster healing for you and all of us here , blessings and peace ❤️ 

[Catina7]

54 minutes ago, Doctorsrcrap said:

I just don't think I csn carry on like this. Being in so much pain and having to fight to be heard just to be told I'm in denial about my mental health and stop refusing my antidepressants. 

I've got to wait for all my b12 stuff to be delivered and then it can take months to reverse damage. And we don't even know for sure it will help these problems and I'm sorry I'm just not coping very well

 

 

I'm sorry you're suffering so much, but tell yourself that giving up is not an option.  I know you can muster enough strength to make it through.  What if the b12 DOES help your issues?  Let's try to think positively and remain hopeful.  You may not realize it, but your endurance is an encouragement to everyone else who is struggling.  🌷

[Doctorsrcrap]

If it was Windows and waves it would be easier but it's not. Its constantly unbearable. I'm not coping but I've done everything I can. 

[Catina7]

@Doctorsrcrap, I wanted to share something important that another member brought to my attention.  They said that if your stomach is not producing enough acid, then it could cause you to not be absorbing b12.  Have you done a stomach acid test on yourself yet?  If it turns out your stomach acid is low, then taking Betaine HCL can help.

 

Simple stomach acid self-test:  https://www.youtube.com/watch?v=6jyAbqak0xk

 

They also said if you buy hydroxocobalamin then you might be able to build up your b12 without having to get the shots.

 

https://en.wikipedia.org/wiki/Hydroxocobalamin

Edited July 15 by Catina7

[Tom2020]

Can you move to a new surgery @Doctorsrcrap? It was a revelation when I finally did  - the doctors actually took me seriously and tried to get to the bottom of things! I looked up surgery ratings on an NHS site and canvassed a local facebook ME group for doctors they recommended.

[Doctorsrcrap]

I am thinking about it but I'm just so tired 

[Tom2020]

10 minutes ago, Doctorsrcrap said:

I am thinking about it but I'm just so tired 

The pain alone must be exhausting 😔 

 

This is the site I used https://gp-patient.co.uk/ The amount of information on each practice can be a bit overwhelming but the 'compare practices' tab is useful to compare any 2 or 3 practises, for example your current one with two candidates.

 

Could you get someone to help you go through them? I don't think you need to agonise over the choice. Any change is likely to be good because you'd get a fresh start with a new GP who isn't biased. Changing should be easy  - just register with the new one and they should have your records transferred from the old place. You'll never have to see your old GP again!

[Doctorsrcrap]

Thank you for your help 

[Suresh]

Hello Doctorsrcrap

Happened to see the post.

Want to share my experience of fibromyalgia.

In 2022 I had an episode of acute fibromyalgia, with muscle and join pains.  It did not help that my doctor prescribed pregabalin 75mg for 10 days and I stopped afterwards, not knowing that it should not be stopped abruptly.  I was hit with severe insomnia and increasing pains all over.  This continued for about a month.

Meanwhile my blood tests came back with low b12 and vitamin D.

I was prescribed amitriptyline 25mg, Vit D 60000 IU per week for 8 weeks and b12 injections (weekly).

After about 8 weeks of injections, the pains had disappeared. Vit D levels went up from 13 to 62.

I waited for another 4 months. Meanwhile I had discovered this forum and went through all the posts.

Last May I started tapering from ami, 10% at a time and holding for 1 month. Meanwhile I also started taking magensium supplement and one multivitamin everyday.

Fast forward to now and I am at 1mg ami everyday. I will completely stop in next 2 months or so.

No more pains.

I feel that low b12 and vitamin D levels were causing my pain.

Have you checked for pernicious anemia?  B12 injections are required in this case.

Folate and iron levels need to be at optimum levels before starting b12 injections.

Sending you my prayers and best wishes for a speedy recovery

[Suresh]

Also want to add that, while taking 60000 IU vitamin D initially, there was extreme fatigue and other issues.  It is possible to address vit D deficiency by taking about 4000 IU everyday, which will not cause the unpleasant side effects that you had (hopefully)

[Doctorsrcrap]

@Suresh

Thank you so much fir reaching out!

My active b12 is low and so is vitamin d, folate and iron. Not completely tanked but all on the lower end. My doctor doesn't want to treat it. 

I'm having to order my own b12 injections and learn to inject myself to try to raise my levels. I'm currently taking folste whilst I wait for my b12 delivery. 

I can not take vitamin D. It makes me very ill when I've tried twice before. No one can explain to me why this happens.

i supplemented vit D 400iu last time not 4000 and i couldnt finction and i passed out! 

[Suresh]

Have you tried taking low dose vit D? Like 2000-4000 IUs everyday? Low Vit D is definitely a cause for bodyaches, I can vouch for it from my experience

 

Sorry I saw you mentioned passing out from 400 IU.

Maybe you will benefit by being out in the sun if that is possible in your area.

[Doctorsrcrap]

Yes I took 400iu. I can't tolerate it.

I was hoping to sort all my other low levels out first and then work out what to do about vit D because I just can't tolerate it and no one cares to explain why that would be. All I know is my body does not want it 

[Tom2020]

My vitamin D level was 8 (normal range is 75-150) a few months ago but I've had no pain. Everyone is different.

 

I react badly to D2 and D3 but I found I can take the active form (calcitriol). 

[Doctorsrcrap]

,I thought there was only 2 versions 

[Tom2020]

I find vitamin D a confusing subject because there are so many forms, they all have similar names, and there are multiple names for the same thing.

 

I know of 5 forms:

• D2 is made by plants. It gets converted to the storage form in the liver.
• D3 is made by some animals. Your skin makes D3 from ultraviolet light. Like D2 it gets converted to the storage form in the liver.
• The storage form (Calcifediol). Your body can store this for months. It gets converted, as needed, to the active form in the kidneys. This is what a standard blood test measures. I don't know if you can get this as a supplement.
• Alfacalcidol: I think this is man-made and not normally found in the human body. It's converted to the active form in the liver. You take it once a day. Its advantage over the forms above is that is doesn't need conversion in the kidneys so it's taken by people with kidney problems. It's licensed as a prescription drug in Canada but I was told in 2024 you cannot actually get it anywhere in Canada.
• The active form (Calcitriol). It has a half-life of 5-8 hours so to keep a fairly steady blood level you have to take it every 8 hours. It's a prescription drug in Canada and I'm currently taking it 3 times a day. It's doesn't need to be converted to anything before use which is good if you have liver or kidney problems. The problem is that as far as I know it doesn't convert back to the storage form so you have to keep taking it for life. I'm hoping I'll become more tolerant to D3 at some point.

Thanks to  PAWS / lyrica withdrawal in 2020  I react badly to D2 and D3, but not to the active form, so I guess my reaction is specifically to one or more of the earlier forms on the list. How they affect they body is beyond me but I imagine all kinds of things could be going on (or going wrong): "D3 appears to stimulate the type I interferon signalling system in the body  – a key part of the immune system that provides a first line of defence against bacteria and viruses." 

 

Don't expect a GP to know about anything other than D2 and D3. Luckily mine is willing to prescribe me obscure things as I'm "medically unique".

 

There's a little extra information on the other forms at this link but it says nothing about Alfacalcidol  https://www.verywellfit.com/vitamin-d-requirements-and-sources-2507048

Edited July 17 by Tom2020
Wording is kinder to my GP

[jon1]

On 7/16/2024 at 11:45 AM, Doctorsrcrap said:

Yes I took 400iu. I can't tolerate it.

I was hoping to sort all my other low levels out first and then work out what to do about vit D because I just can't tolerate it and no one cares to explain why that would be. All I know is my body does not want it 

I can’t tolerate synthetic vitamin D either, in any form or any dose. I get horrific agitation a few hours after taking it, which lasts a couple of days. It’s not withdrawal related as I’ve had it all my life.

 

According to my doctor, a significant minority of people react badly to man made vitamin D.

 

The current theories are that for some, the body simply doesn’t know how to process the synthetic version, or that we really don’t need it to begin with.

 

Indeed, opinion seems to be changing on vitamin D. With some scientists now saying the blood tests are useless, and taking it as a supplement may be harmful to some people.

 

So I get out in the sunshine as much as possible over summer. It’s the healthiest and most effective way to raise D levels.

[Tom2020]

You may also find a site like https://www.ratemds.com/ useful. I don't know if it works in the UK but there must be something similar.

[Doctorsrcrap]

Happy 2 year anniversary to me. 

The only party I will be having is a pity party for one. 

I honestly thought at 2 years I woule be doing so much better. Was I deluded? To be honest I don't know what to blame my problems on anymore. All I know is I'm in the worst shape ever. 

 

Symptoms 

. Back pain

. Buttock burning

. Leg stiffness 

. Abdominal pain 

. Nausea

. Headache

. Lightheaded

. Fast heart 

The list goes on 

 

. Been told have b12, iron and D deficiency 

. Cant tolerate vit D, don't know why, don't know how I'm going to rectify

. Going to be starting self injecting of B12, when thr stuff finally arrives 

. Think I have an absorbtion problem. Don't know why. Waiting to be referred to gastro. 

. A stool test showed low pancreatic enzymes 

 

At this point I dint know what's causing what but whst I do know is I dont know how much longer I can do this to find out 

 

Is it withdrawal? Who knows 

[jon1]

9 minutes ago, Doctorsrcrap said:

Happy 2 year anniversary to me. 

The only party I will be having is a pity party for one. 

I honestly thought at 2 years I woule be doing so much better. Was I deluded? To be honest I don't know what to blame my problems on anymore. All I know is I'm in the worst shape ever. 

 

Symptoms 

. Back pain

. Buttock burning

. Leg stiffness 

. Abdominal pain 

. Nausea

. Headache

. Lightheaded

. Fast heart 

The list goes on 

 

. Been told have b12, iron and D deficiency 

. Cant tolerate vit D, don't know why, don't know how I'm going to rectify

. Going to be starting self injecting of B12, when thr stuff finally arrives 

. Think I have an absorbtion problem. Don't know why. Waiting to be referred to gastro. 

. A stool test showed low pancreatic enzymes 

 

At this point I dint know what's causing what but whst I do know is I dont know how much longer I can do this to find out 

 

Is it withdrawal? Who knows 

Sorry you’re having such a bad time. It’s cold comfort, but I also have many of the issues you describe (I’m 2 1/2 years in), so your experience isn’t unusual.

 

With regards vitamin D, just get out in the sunshine. A few minutes outside, even on quite a cloudy day, will give you all you need.

 

On the same note, low vitamin d doesn’t really matter as much as is sometimes made out, the latest research involving tens of thousands of people over several years, has found that vitamin D makes no difference whatsoever to health, either physical or mental. So don’t stress yourself about that particular thing.

 

Mine was very, very low at one point, and I felt no different when it was back to normal levels.

[Catina7]

27 minutes ago, Doctorsrcrap said:

Cant tolerate vit D, don't know why, don't know how I'm going to rectify

 

Natural ways to raise Vitamin D levels are sunshine, UVB light bulbs, fatty fish (i.e. salmon), egg yolks, and mushrooms.

 

29 minutes ago, Doctorsrcrap said:

Think I have an absorbtion problem. Don't know why. Waiting to be referred to gastro. 

 

Have you tested yourself for low stomach acid?  This was a suggestion by a knowledgable SA member.

 

Recovery from psych med damage can take quite a while so keep hanging in there.  You've done a great job with being as proactive as you can so far.  

[Tom2020]

30 minutes ago, Catina7 said:

Natural ways to raise Vitamin D levels are sunshine, UVB light bulbs, fatty fish (i.e. salmon), egg yolks, and mushrooms.

Liver is another source. Mushrooms only have vitamin D if they're exposed to UV light while they're growing.

[Doctorsrcrap]

I just want to give up.

I'm confused and don't know how to sort all this out.

A doctor should be helping me. I shouldn't be struggling through this trying to figure stuff out.

It's too much 

[Catina7]

12 minutes ago, Tom2020 said:

Liver is another source. Mushrooms only have vitamin D if they're exposed to UV light while they're growing.

 

Good to know, thanks!  👍

[Catina7]

Please don't give up!  I truly believe you will recover in time.  

 

Forgive me if you've mentioned this before, but have you looked into cold water therapy (i.e. ice baths) to help your issues?  I know that cold water can be great for pain and inflammation.  It can also slow down a fast heart rate.  I'm just trying to think of other things that could possibly help you!  

[Doctorsrcrap]

I do cold showers!