Initially I was told I would need 3 injections in a week followed by 1 injection ongoing every 3 months. This was quickly followed by a retraction by GP and nurse who said that because my iron levels were fine I would only need one injection which I had in April and I had another 3 weeks ago(August)
3 weeks ago I was also diagnosed with hypothyroidism and put on Levo
I've been feeling really awful very tired, sleeping a lot and bad brain fog.
I've had advice on thyroid website in terms of my thyroid but am wondering if the b12 treatment was right. A lot of advice is saying my GP is negligent and I should have had loading doses
Can anyone please help
Written by
MzChapperz
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As per response to your ealier post a few days ago - your GP appears to be one of the many who has confused B12 deficiency with anaemia - it isn't anaemia - anaemia is a symptom but it isn't necessarily among the first to occur.
You should have had loading doses.
Please try to go through the pinned posts and print out some of the relevant documents and take them to your GP to ensure you get the right treatment. If you have a friend or relative who can help you as you are struggling that would be good.
Your GP really just needs to give you loading doses properly - there aren't any problems with having high B12 levels - you can't overdose on it but you do need to get your levels up really high to start off with.
Yes he can and shóuld give them now. Have a read in our Pinned Posts wher you can also fin the Guidelines and refer to the info in the posts in speaking with your GP. No need to test again, he should have given you the right treatment from the start. You need again the loading dose, from the start and go from there. And you need to be tested for pernicious anaamia as well.
It's sometimes difficult to know whether it's the thyroid or the B12 causing fatigue, etc. and most doctors will usually only treat your thyroid condition – they won't treat your autoimmune condition, which would appear to be at the root of your problems. Your B12 levels were very low indeed - your GP should be following up with further tests to discover why and seems unaware of the following information re. anaemia and measuring serum levels after treatment has begun:
The above BMJ research document is supported by many research papers, has a useful summary and is peer reviewed. It also states (bottom of page 4 under 'How is Response to treatment assessed' ) :
"Cobalamin and holotranscobalamin levels are not helpful because they increase with vitamin B12 influx regardless of the effectiveness of treatment,24 and retesting is not usually required."
I'm assuming that your thyroid medication is optimal. I only began to function better and feel less tired with a lower or suppressed TSH, and it was only then that fatigue, blood pressure, cholestrol, etc. began to improve. If you haven't already read it, 'Understanding Thyroid Disorders', written by Dr A. Toft, gives good advice and it is published in association with the BMA :
". Typical results would be a fT of 24 pmol/l or TT4 of 140 nmol/l, and a TSH of 0.2 mU/l. In some patients, a sense of well bring is achieved only when fT4 or TT4 is raised, for example 30 pmol/l or 170 nmol/1 and TSH low or undetectable. In this circumstance, it is essential that the T3 level in the blood is unequivocally normal in order to avoid hyperthyroidism."
..........
Many researchers believe leaky gut/intestinal disease is the source of autoimmune disease and I believe this is at the bottom of all our own family autoimmune/Hashimoto's thyroid/B12 problems.
Personally I've found that taking daily spoonfuls of sauerkraut (more good bacteria than any probiotic), and avoiding gluten, is hopefully healing the villi in my stomach wall and helping absorption of B12 and other essential nutrients - thereby strengthening the immune system. You may find Dr Marc Ryan's (on his Facebook page) excellent article interesting - 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."
Hi there, I have low B12 and underactive thyroid, they often occur together. You need your levels of B12 to be high in order for you to convert the Levothyroxine ( thyroid medicine), to be converted by your body. If it doesn't convert, it isn't able to be used by your body properly. You need loading doses and then regular top up injections. Do you have neurological symptoms of low B12? MariLiz
I was diagnosed with PA & my doctor told me I would have 3 injections over the course of a week & then an injection every 3 months. I read the guidance on this forum & when I went for my first injection I queried it with the nurse. She then spoke to the doctor whose response was "oh have the guidelines changed". It is worth reading up & questioning.
Maybe you could take a family member with you with a list of the symptoms you are having as well as the guidelines for treating B12 deficiency ( found on this site ). An extra person will help you to argue your case and it is often better to have a brain that has not got a B12 deficiency. Also, two people are harder to fob off. I think you are on the right track. Good luck, you'll have it sorted out soon.
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