What to do next as slowing down again 3 weeks after loading injections

[carer999]

I finished my loading injections nearly 3 weeks ago and I was just starting to get some energy back, only a small amount but I noticed it and I ached less. However in the last week I have become just as tired as I was before I started. My doctor is one of the 3 month only rule. I am also vitamin D deficient for which she prescribed pills for two months and then I have to buy them. I can go back for b12 injection in 3 months and she will also restest my vit b12 and vit D in 3 months.

I also have ME and under active thyroid since 2007 and had to give up work in 2014. Despite stoppoing work I have slowly been feeling wrose in the last 18 months which is why I asked for vit B12 and vit D blood tests having notice no change with an increase in thyroxine pills.

I am considering getting some B12 medication to see if I can get anymore energy back and stop all my muscles aching. From time to time I also get pins and needles in fingers and feet and I have even been know to almost put an item in the fridge that was meant for the microwave.

Is it worthwhile taking any additional B12 yet or is it too soon and I am impatient to get a life back. If yes what would be the best to go for and what sort of dosage please. I don't like the idea of injecting yet.

My intrinistic facor test was negative and folate and iron are OK.

Also any suggests on best vitamin D supplement and amount I should take would be appreciated as I will soon have to start buying some. My perscription ones are 800 iu once a day.

My B12 test result was 110 and vitamin D 45nm ol/l.

Thanks for reading.

[Polaris]

I was shocked at your low levels of B12 and This makes me so cross that they're calling it ME. My relative was misdiagnosed with ME/CFS for years and then dementia. It turned out to be severe B12 deficiency and she has been very ill with irreversible nerve damage. Don't be fobbed off - ME is a lazy diagnosis and I wish we had supplemented our own injections from Germany instead of waiting for her useless GP     

I hope this extract from the BCSH guidelines will help persuade your GP to take your symptoms more seriously and treat more aggressively with more frequent injections:

"The BNF advises that patients presenting with neurological symptoms should receive 1000 ug i.m. on alternate days until there is no further improvement".

This is what Martyn Hooper talked about in the House of Lords in June of last year:

"Many of the members of the Pernicious Anaemia Society were originally told that they had CFS/ME because their tests results came back showing no B12 Deficiency and No Intrinsic Factor Antibodies. The new guidelines state quite categorically that the current serum B12 test should be ignored if the patient has all or some of the symptoms of Pernicious Anaemia and the patient should be treated using replacement therapy injections of B12. Likewise, just because a patient’s blood work didn’t show any intrinsic factor antibodies doesn’t mean that he or she doesn’t have Pernicious Anaemia rather the patient could have negative antibody pernicious anaemia – NABPA.

We know that very few GPs have read the new guidelines so just how many people whose blood tests indicated nothing wrong were then told that their symptoms were due to CFS/ME? Probably many thousands..."

b12deficiency.info/b12-writ.... (templates and an excellent film)

[Polaris in reply to Polaris]

Is anyone else having problems typing posts, editing, inserting text, etc on the site?

[deniseinmilden in reply to Polaris]

Yes, it's being a bit odd!

[syl123 in reply to Polaris]

yes ,i cant seem to access my posts unless somebody responds, they dont seem to be stored anywhere on my page.

[carer999 in reply to Polaris]

My GP seems to want to ignore my symptoms as I didn't mention them when  I asked for the b12 last summer. I then mislaid the form and didn't get the test till early Feb this year. I only asked for it after researching thyroid as I  my GP kept telling me my thyroid was in the range. I persuaded her to increase the thyroxine but it gave me palpitations. I am not sure I will get anywhere with my GP hence my thinking about supplements. she basically said that with my history not to hold to much hope of improvement with b12. Even suggested that I may only need a few injections for a boost and then they could stop.

[Polaris in reply to carer999]

As you probably already know, autoimmune thyroid problems and PA/B12 def. are often interlinked, with symptoms overlapping and leaky gut/intestinal disease the source. I believe this is at the bottom of all our own family autoimmune/thyroid/B12 issues.  

Personally I've found that, avoiding gluten and taking daily spoonfuls of sauerkraut for gastritis & H/pylori (more good bacteria than any probiotic), is hopefully healing the villi in my stomach wall and helping absorption of B12. Dr Marc Ryan has written an excellent article on this and here is an extract:

"Hashimoto's Health Tip: The Little Paint Brushes in Your Tummy"

"Anyone who has lived with Hashimoto's knows that this is so much more than a thyroid problem. The biggest axis of trouble is often found in the thyroid-brain-gut connection. And one common problem that causes this is leaky gut or intestinal permeability.

Many researchers believe that this is ground zero for autoimmune disease.

It is the place that autoimmune disease is born and the place that makes it get worse and worse. And when things get worse in the gut, problems in the thyroid and brain often follow. In this post, I wanted to shed light on some little known but very helpful enzymes called brush border enzymes.

The small intestines are the place where leaky gut often happens. And the walls of the small intestines are lined with tiny little hair like protrusions called microvilli. On a regular microscope they kind of look like a tiny, fuzzy paint brush. This fuzzy appearance is why they came up with the term "brush border" to describe them.

This is the place where absorption happens.

And many people with Hashimoto's suffer from deficiencies of important vitamins and nutrients (like vitamin D, vitamin B12 and B6, zinc, selenium, magnesium, iron, etc.)

One of the reasons for this is the breakdown of these brush borders.

Foods high in lectins or other inflammatory substances (like gluten, and other grains, beans and nightshades) can actually cause these brush borders to get crushed and destroyed.

The microvilli (little hairs) that make up the brush border have enzymes for this final part of digestion anchored into their membrane as membrane proteins. These enzymes are found near to the transporters that will then allow absorption of digested nutrients."

In the meantime Carer900, you could try supplementing with Jarrows Methylcobalamin 5000 mcg sublingually, available from Amazon (good reviews for neurological symptoms) - others find oral/nasal sprays/patches effective.  

If none of the above brings an improvement quickly, it would probably be wise to start to self inject.

[Polaris in reply to Polaris]

chriskresser.com/your-gut-m...

[Smiler71 in reply to Polaris]

I also was fobbed off with a lousy couple of GP's repeatedly telling me my symptoms and pain were due to it being all in my head and the repeated wrong diagnosis of fibromyalgia. It was only a new gp that tested my B12 levels that I found out that I had the B12 deficiency. My advice to anyone suffering a whole host of symptoms is to keep challenging your gp until you get the right diagnosis.

[Polaris]

Re. Vit D supplement, this is what I took (K2 ensures D3 goes into the bones and not the blood) :

amazon.co.uk/Oxford-Vitalit...

[Polaris]

Sorry, this is the one:

amazon.co.uk/Oxford-Vitalit...

[deniseinmilden]

Hi, 

I so know what you mean and totally agree with Polaris. 

You could look up "My Experiences" under my profile if you like to get some ideas of other possible supplements. 

For me only the injections really work, are fine to do once you try them and - importantly - are the most cost effective. 

Keep in touch!   

[carer999 in reply to deniseinmilden]

On amazon there are some reviews which say that solgar that a long time to dissolve. Did you find this. How long does it take with you

[deniseinmilden in reply to carer999]

Yes, which is why I find them the most effective.  I don't know - half an hour?  

[jillc39]

oh I am in the same boat - three weeks after my b12 injection I am back to square one.  my gp also has the three months rule - I too am thinking of getting b12 from a german source.

[carer999 in reply to jillc39]

Have you tried any other method of supplementing. I am rather worried about injecting. Also I  don't know if I am expecting to much to soon and should wait a while. When did you finish your loading injections.

[deniseinmilden in reply to carer999]

I understand your concerns but please remember that your body needs this essential vitamin and your nerves sustain damage without it.  For many who have gone too long without treatment this damage becomes irreversible.  People still die of this deficiency: it is mad that the medical profession doesn't take it seriously.  

[jillc39]

I have heard that 800 units a day are no use at all - it should be minimum of 1000.  two friends of mine now buy it as recommended by their consultant NOT the gp who had stuck to the guidelines of 800.  I just pass this info on.

[illnesswhatillness]

Ask your doctor if they are familiar with the guidelines issued by The British Committee for Standards in Haemotology for the Diagnosis and Treatment of Cobalamin and Folate Disorders who advise that regardless of blood test results which are unreliable due to the sensitivity of the test , if a pateint is symptomatic , treatment should commence immediately to avoid any further neurological damage . Apart from this , your b12 serum level of 110 is very low indeed . The hydroxycobalamin injections your doctor is giving you , is an inactive form of b12 and the active form was reserved for the private sector . You can buy your own methylcobalamin . Try Jarrow Methylcobalamin 5000mcg Vegetariian lozengers or get some B12 Boost spray from Holland and Barrett which also has methylcobalamin in it . I think you will be pleasantly surprised after a week or two .

[fbirder in reply to illnesswhatillness]

The hydroxocobalamin you're taking is just as good as methylcobalamin. In fact it's better as you know that 100% of it is actually getting into your body. Besides, hydroxocobalamin is the natural form of B12 found in food.

[syl123 in reply to illnesswhatillness]

hi illnesswhatillness,just read through your post and am I right in thinking that because hydroxycobalamin is inactive B12 it wont be any good? I have had 5 injections of this and dont feel any better?

[pvanderaa]

You can take any amount of B12 supplements. It is water soluble and doesn't accumulate to toxic levels.  The  liver and kidneys filters it out and it is lost because with PA or an absorption issue it is not recycled from the gut.

In addition to my weekly cyano B12 injections, I take 2x 5000mcg methyl cobalamin sublinguals about 30 minutes before meetings so that I can think clearly and don't get too muddled.

Start a logbook of all your neurological symptoms.  Try to assess your own severity score.  Also log all food drink and medications.  Some symptoms only appear 3 to 48 hours after the causing agent.

I've used the logbook twice, once in the UK and then in the USA, to get the GP to increase my dosage.  It is evidence, that when the GP see and holds it, somehow breaks through the stubbornness or their preconceived ideas about B12 deficiency.