GP says 'B12 blood test unmeasurable >2000' therefore reducing injections frequency from 4 weeks to three monthly.

[apn1179]

I was diagnosed with Pernicious anaemia in 2002. I also have under-active thyroid. I started with the three-month injections but my quality of life and my symptoms were not relieved. So it was agreed that I would have my injections every 4 weeks. Over the years I have had the GP question this; the last time in approx. 2008 when the GP wrote to the Haematologist at the hospital to ask whether having the injection more frequent could be harmful the haematologist said that excess B12 was disposed of by the body and that it was not a problem.

Now I am faced with the same scenario my blood test came back and I have received a letter form the GP

GP states "I understand that you are receiving Viatamin B12 injections on a monthly basis. This is too frequent. Your blood test suggests that your Vitamin B12 tests are unrecordably high. The normal frequency of Vit B12 injection is one every 3-6 months. It is not appropriate to continue with injections at monthly frequency as this serves no clinical purpose yet inflicts discomfort and risk unnecessary infection from the injection site"

I have a print out of test results

Serum B12 level (XE2pf) Above range >2000 ng/L (197-771.0)

Serum folate level (42U5) 3.3 ug/L (2.0 – 18.7)

Serum ferritin level (XE24r) 51.0 (20.0 – 260.0)

Thyroid function test

Serum T4 level(XaERr) 19.7 pmul/L (11.0-23.0)

Serum TSH level (Xaelv) 3.6 mU/L (0.27-4.5)

My symptoms. I am permanently tired I have to take a rest one or two times a day. I do not feel immediate relief after getting injection. People can always tell when my injection is due. I look so pale and dark under eyes . After I have had injection. I start to feel a bit better towards the end of the week but I never achieve pre-PA diagnosis energy levels. I get a sore tongue, digestion is affected bouts of Diarrhoea, bad stomach pains/cramps. Irritable brain fog confusion (I have been tested for dementia but clear of that). Headaches. I don’t get tingling of fingers at weekly injections but was before then. Shortness of breath. Tinnitus. Sleep disturbance. Then I get more tired in the fourth week

My husband died three years ago so I am the head of household now and cannot afford to have the poor quality of life reduced any further

Any advice as to how I can approach the GP to persuade that actually I do need to continue with 4 weekly injections please. Any links to official information that I can take with me to the appointment would be greatly appreciated.

[Lisahelen]

Your folate is dragging along the floor which is more than likely exacerbating your symptoms it needs to be higher up the reference range to help the frequent b12 injections which you have had.

Do you take any multivits and/or folic acid tablets?

Im sure one of the admins will post a more in depth reply for uou.

[Gambit62 Administrator]

apn1179 - would suggest that you contact and join the PAS directly for detailed support

pernicious-anaemia-society....

unfortunately serum B12 really isn't a test that can be used to monitor and determine the frequency of maintenance shots - nobody is quite sure why but many people need to have levels much higher than the normal range after loading doses to be able to function properly. One possibility is that raising serum B12 through an injection leads to another auto-immune response that keeps B12 in blood and stops it getting through to cells but this can be treated effectively by keeping serum B12 levels very high so enough manages to beat the reaction and get through to cells.

Unfortunately getting through to GPs on this can be very difficult so many of us find other ways of supplementing or even source additional injectable B12 and treat ourselves.

You might find it useful to explore the PAS website and there will be a number of materials in the pinned posts that you may find useful.

It may also be useful to suggest that your GP takes a look at the area on the PAS website that is particularly aimed at medical professionals

pernicious-anaemia-society....

[Gambit62 Administrator in reply to Gambit62]

also meant to mention that it would be useful to know when you had the test in relation to maintenance doses - the injections will make the levels in your blood astronomic and then it will decline - the rate at which it declines (because excess B12 is being removed by your kidneys) will get slower as the level comes down so if the test was shortly after a dose then the result will be absolutely meaningless

[apn1179]

Hi thanks for the replies. I am a paying member of PAS but find it difficult to find the informatiom that I want on there I have been looking for a few days now. The blood test was taken 20 days after my B12 injection. I don't take any suppliments. I have got some forceval suppliment that I can take

There are 12 vitamins in Forceval Capsules:

Vitamin A (as β-Carotene) 2500 iu

(Retinol Equivalent) (750 micrograms)

Vitamin D2 400 iu (10 micrograms)

Vitamin B1 (Thiamin) 1.2 mg

Vitamin B2 (Riboflavin) 1.6 mg

Vitamin B6 (Pyridoxine) 2.0 mg

Vitamin B12 3.0 micrograms

Vitamin C 60 mg

Vitamin E 10 mg

Biotin 100 micrograms

Nicotinamide 18 mg

Pantothenic Acid 4.0 mg

Folic Acid 400 micrograms

There are 12 minerals and trace elements in Forceval Capsules:

Calcium 108 mg

Iron 12 mg

Copper 2.0 mg

Phosphorous 83 mg

Magnesium 30 mg

Potassium 4.0 mg

Zinc 15 mg

Iodine 140 micrograms

Manganese 3.0 mg

Selenium 50 micrograms

Chromium 200 micrograms

Molybdenum 250 micrograms

The functions of the vitamins found in Forceval Capsules are:1,2,3,4

Vitamin A (β-Carotene) Is essential for growth, maintenance of skin and mucous membranes such as the linings of the mouth, nose, lungs, digestive system, colon and for vision, particularly at night

Vitamin D2 Vitamin D2 helps the body absorb calcium, potassium and phosphorous, all of which are vital for healthy bones and teeth

Vitamin B1 (Thiamin) Is involved in the proper functioning of the heart muscles and for the release of energy from protein, fat and carbohydrate, needed for growth, normal appetite and digestion. Thiamin has also been shown to play a vital role in the normal functioning of the nervous system

Vitamin B2 (Riboflavin) Vitamin B2 plays a key role in energy metabolism, and is required for the metabolism of fats, carbohydrates, and proteins

Vitamin B6 (Pyridoxine) Vitamin B6 helps protein metabolism, along with the maintenance of the nervous and immune systems

Vitamin B12 Vitamin B12 is often called the 'red vitamin' because it is required for regulating blood cells

Vitamin C Vitamin C is an essential vitamin that plays an important role in maintaining the health of our cells, blood vessels and our resistance to infection. Vitamin C also helps bones, teeth, gums, skin and assists the absorption of iron from the blood

Vitamin E Vitamin E is a highly effective antioxidant, helping to protect the body from the effects of free radicals. It also helps to maintain healthy skin and blood cells

Biotin Biotin is needed for normal growth and development of the skin and hair, the maintenance of a healthy nervous system and the healthy functioning of bone marrow

Nicotinamide Nicotinamide (also known as vitamin B3) is essential for a healthy nervous system

Pantothenic acid Pantothenic acid plays a vital role in the process of releasing energy from foods, the role of fat metabolism and the provision of the immune system with antibodies

Folic acid Folic acid is required to regulate the growth of cells including red blood cells and protein synthesis

The main functions of the minerals and trace elements are: 1,2,3,4

Calcium Calcium is necessary for the formation of bones and teeth and plays a vital role in cell function, muscle contraction and in the nervous system

Iron Iron forms part of red blood cells which carry oxygen round the body

Copper Is required for growth and forms part of enzymes involved in blood and bone formation

Phosphorus Phosphorus is necessary for the formation of bones and has an important role in many varied chemical reactions in the body

Potassium Potassium is essential in muscle function and in the transmission of nerve impulses

Magnesium Magnesium is essential for the formation of bones and teeth, and for the release of energy from food

Zinc Zinc is required for growth and cell function, bone metabolism, taste, insulin production and the body’s immune system which fights infection

Iodine Involved in functioning of the thyroid gland which regulates many of the metabolic processes in the body

Manganese Manganese helps the body to utilise calcium and potassium and maintain the structure of cells

Selenium Selenium helps to protect the cells and lipids from free radical damage

Chromium Helps the body to use glucose by its action on insulin

Molybdenum Is involved in the enzyme processes for protein metabolism.

[apn1179]

I had Helicobacter pylori

diagnosed in 2012 and had a course of antibiotics (not penecillin as I am allergic) had to drive 100 miles round trip to have breath test, still had HBP anothrer course of antibiotics but did not get breath test on completion of that course as I had no means of getting to/from the hospital at a reasonable cost. I may still have HBP therefore. I am on Rabeprazole 20mg gastro-resistant tablets, Just been prescribed Adcal-D3 chewable tablets for oestiopenia. I had an oesophagectomy in 2000 (lower oesophagus/upper stomach removed)

[apn1179 in reply to apn1179]

I have been to see GP (not the one that wrote the letter) he is going to discuss with author of letter and they will then ask to see me/refer me but will not stop injections in the meantime

[apn1179]

I thought I would give an update. I had plans to travel for a period of 30 days in Eastern Europre which meant that my B12 was due in the middle of the travels while I was in Prague. Faced with either delaying my injection in UK and having to last for six weeks to have an injection just before I left UK or arranging an injection in Prague I decided to try another source. I tried the under tongue spray a few years ago which had no effect so I looked through this forum and found recommentations for B12 sublingual tablets - with nothing to loose I ordered 2 types and took one type in the morning and the other one in the evening. I survived six weeks till my UK injection and felt ok no manic stressing or short tempered i,patient episodes. I can't say that my condition inproved but maybe with long term use I will find that I can drop the monthly injections. I ordered from

Cytoplan (I have a link for people if they would like a £10 discount off their first order ) I don't know whether we are allowed to give out discount codes on here.

I will update after a few more months as to whether I have dropped the injections

[apn1179]

No I have not had the active B12 test where do you go for the test?

[apn1179]

I've been taking sublingual hydroxocobalamin 1mg for 9 months I still need injections and my tongue still gets sore patches periodically.

[humanbean]

Your folate and ferritin are really poor and your TSH shows that you are obviously under-medicated for your thyroid condition. I know this is an old post and the results you've quoted are old results, but you might benefit from joining the Thyroid UK forum and asking for help there :

healthunlocked.com/thyroiduk

[apn1179]

Hi again I have been taking Cytoplan's Vitamin B12 Hydroxocobalamin supplement sublingual tablet in addition to my monthly B12 injection. Cytoplan have changed the ingredients, I complained by email and they waffled at me, so I put a negative review on Feefo see below for content. I would be interested in peoples opinions n the response by their senior Nutritional Therapist.

My tongue is very sore my next injection is on 13 January, I don't normally have glossitis at this point it is normally sore at and just after my injection,

Thanks

===

Me

This is a review on Cytoplan's Vitamin B12 Hydroxocobalamin supplement sublingual tablet. I have used the product since 2019 HOWEVER the manufacture of the product has changed - it is NOT sublingual it takes at least 30 minutes to dissolve in the mouth. If you like me have Pernicious anaemia it is not possible to absorb B12 through the stomach. The CS at Cytoplan told me it was ok to just swallow the supplement as they have changed the manufacturing process and removed sodium (disintegration agent) but their trials demonstrate that it does break down well. I disagree strongly so my options now are to take the product and wait a considerable amount of time for it to dissolve sublingually or swallow and not get any benefit. I bought under the offer buy two get one three, I am nearly through the first bottle, I shall not purchase this product again.

Rebecca (merchant):

Hello, thank you for your feedback. I have forwarded your concerns to our senior Nutritional Therapist for a response. I will follow up with you as soon as I can. Kind regards, The customer Service team.

03/01/2023 16:41 Rebecca (merchant):

Hello, I have an updated response for you:

'If you have pernicious anaemia our other product, methylcobalamin and adenosyl cobalamin, would be best suited to your needs. This product does dissolve sublingually but as the b12 is in an active form it does not need intrinsic factor so will be absorbed on contact with mucous membranes and also through the digestive tract. I would be happy to send you a pot of this free as this is the form of B12 that you need.

@humanbean

On a separate note I have been on the TPAUK.com forum I have just started using Thyroid S I am in week 3 I have not noticed any improvement yet but it is a slow process building up the dosage

[Technoid in reply to apn1179]

Regards their statement :

"If you have pernicious anaemia our other product, methylcobalamin and adenosyl cobalamin, would be best suited to your needs. This product does dissolve sublingually but as the b12 is in an active form it does not need intrinsic factor so will be absorbed on contact with mucous membranes and also through the digestive tract"

This is complete nonsense. There is no evidence that the active forms are absorbed any differently than hydroxocobalamin with regards to passive absorption or absorption via intrinsic factor. Both passive absorption and intrinsic factor absorption can take up all forms of human-usable B12, not just the active forms. It should also be understood that the active forms are not used directly by the body but are broken down to cobalamin and then rebuilt into the required forms that are needed.

[apn1179 in reply to Technoid]

Thanks Technoid, I thought so but it’s always good to ask around. Something is afoot as they say as my tongue is raw and sore more then previously. I will take Cytoplan up on their offer of methylcobalamin and adenosyl cobalamin, to see if it helps. I am considering SI but need to sort my thyroid S dosage out first