What to do next?

[SiOD]

I'll try to be brief.

I have a longstanding history of Hashimoto's thyroiditis and have been on thyroxine for about 20 yrs.

I am a 53 yr old male.

In spring 2014 I took ill with exhaustion breathlessness depression etc. needed to spend much of the day in bed. Terrible clouded thinking. Not coping in work.

Went to GP in July and B12 was 93.

Had loading dose over two weeks. Felt much better.

Returned to work after 5 weeks sick.

Rang GP who said my B12 was 700 and she was not happy a three monthly jab would work for me.

I've been on monthly jabs since. All good so far.

But the GP who recommended monthly jabs has left the practice and my current GP doesn't think I have pernicious anaemia or even B12 deficiency. He puts my ongoing exhaustion down to stress of working in the NHS. Also lifestyle choice re alcohol consumption, lack of exercise and weight. (I have gained weight because I'm too tired to gym and swim!)

He wanted to step down my jabs to 2 monthly. Okay I agreed but as you don't the no there is a problem I asked to be referred to a haematologist.

This week a letter has come back from the GP saying he doesn't need to see me and I don't need treatment!!!

My GP now thinks I should step down to 3

Monthly jabs and is unconvinced I even need those.

He thinks maybe oral B12 should suffice. But I was taking multivitamins when my level was 93!!!

My last level

On monthly jabs was 700. I have agreed to have a 2 monthly then 3 monthly jab with baseline blood tests each time.

See where we go from there.

Talk about your life in their hands. It's woeful that two GPs can have such different views and approaches. And that a haematologist can make a declaration without even seeing you.

Sorry that want as brief as I had hoped it would be x

Simon

[Gambit62 Administrator]

Yes, really difficult that Gps and even specialists really aren't open to looking at the facts in front of them.

It is possible to take high doses of B12 by mouth and get enough b12 as about 1% of B12 is absorbed outside the ileum - but you would need to be taking somewhere around 1mg a day - which is a lot more than you get in the standard multi-vit - ie you would need at least 100x RDA = 10,000% of RDA.

2 months and 3 months for injections don't seem to have any sound scientific basis that people can trot out - just mythology gone mad.. If you source B12 injections from Germany the instruction leaflet gives monthly as the standard.

It may be time to take matters in to your own hands and treat yourself rather than feeling at the mercy of the vagaries and wims of the alledged experts.

[Sleepybunny]

Hi,

Have you looked at the BCSH Cobalamin and Folate guidelines? A search on google will throw up a link.

I found page 29 particularly interesting...it's a diagnosis flowchart. Has your GP seen a copy of this document? The PAS website has a useful summary of these guidelines in library section on their website.

pernicious-anaemia-society.org

Has your GP ever tested your anti-intrinsic factor? it is possible to have PA with negative IF tests.

I'd recommend you contact the PAS . You can leave a message and they will get back to you.

Head office: 01656 769 717

[bloodtransfusion1]

My GP wrote to a haematologist for advice and they wrote back without seeing me. They are saying that my blood tests are normal and therefore I don't need B12 treatment. I was asking for a therapeutic trial B12 injection to see how I feel. The haematologist even said that it would do no harm to give B12 injections.

I think we need to get back to preventative measures for patients also. I have hypothyroidism and get levothyroxine and have had my thyroid drained because of a goitre. I also had Roaccutane for chronic acne after which I should have been monitored for my thyroid and B12 but this was never done.

After the Roaccutane I could feel the deterioration I went through but the GP did not check me for B12 and thyroid function hence I ended up with a goitre. You would think that someone like me after having all the symptoms listed on the Pernicious Anemia Society website would be at least given a trial B12 therpeutic injection to see how I feel.

[bloodtransfusion1]

I have had Roaccutane for chronic acne after which I should have been monitored for my thyroid function and my B12 but this was not done. Hence I developed a goitre and even after going to the hospital for years having this drained they still did not monitor me for B12. I also was prescribed with levothyroxine and still no monitoring of my B12.

I would have thought that it would be a no brainer for my GP to allow me to trial a therapeutic B12 injection to see how I feel. I have had nearly all of the symptoms on the check list on the Pernicious Anaemia Society website.

My GP wrote to a haematologist for advice and she said that she would not recommend treatment as my blood test was normal, however I was taking B12 supplements and have been taking iron tablets 200mg ferrous sulphate since 2006. I didn't know that I should discontine these before the blood test.

I would have thought that it would be a no brainer for the GP to carry out a trial to allow me to see how I feel. Also to make up for the 15 years I have missed out on in my life since taking Roaccutane and suffering a goitre.

We need the GP's to start using preventative measures for patients not waiting until they are on the floor with fatigue and other serious symptoms. I don't want to be treated like that. I've already been through enough.

[Chancery]

Hi Si. Your B12 really was VERY low; it was a miracle you were still standing. And going up to 700 is chickenfeed, considering you were on loading doses. If I were you, I don't think I would accept these changes to the injection frequency. I think you should fight to keep your monthly jabs until you are well out the woods and everyone, including you, can be sure that you no longer need them that frequently.

I think the real question here should be how do you feel, B12 wise? Do YOU feel that you are better and that 3 monthly injections will keep you there? If not, and you are still symptomatic, I would strongly recommend you do not take this lying down. You need to get assertive with them and point out that you are symptomatic still and it is not appropriate to cut the injection frequency. You need to become something of a bolshie patient; It's your health at stake, not theirs! Best of luck.

[Polaris]

In view of the fact that your B12 level was very low, it is downright negligent to ignore this, as well as your obvious symptoms and the thyroid/autoimmune connection. It is perfectly reasonable to ask for further specialist tests to find out why B12 was so low. Oral B12 is usually Cyanocobalamin, and not adequate treatment.

Below are links which give advice and various templates for writing to your doctor, with the latest BMJ research and BCSH guidelines, which they should be made aware of:

b12deficiency.info/b12-writ...

b12deficiency.info/films

cmim.org/pdf2014/funcion.ph...

Cmim/BMJ document. " Summary:

* Vitamin B12 deficiency is a common but serious condition

* Clinical presentation may not be obvious thus leading to complex issues around diagnosis and treatment.

* There is no ideal test to define deficiency and therefore the clinical condition of the patient is of utmost importance."

* There is evidence that new techniques, such as measurement of holotranscobalamin and methylmalonic acid levels seem useful in more accurately defining deficiency.

* If clinical features suggest deficiency, then it is important to treat patients to avoid neurological impairment even if there may be discordance between test results and clinical features.

Severe deficiency shows evidence of bone marrow suppression, clear evidence of neurological features and risk of cardiomyopathy.

It is important to recognise that clinical features of deficiency can manifest without anaemia and also without low serum vitamin B12 levels. In these cases, treatment should still be given without delay."

Good luck and don't be fobbed off SIOD - the results of not treating adequately are catastrophic.

[SiOD]

Thanks so much for your incredibly helpful replies. I intend to write to my GP quoting some of the guidelines and comments and see where that takes me.