6 weekly injections - still symptomatic and unsure what to do

[Cymraes84]

Hi all

I was diagnosed with PA back in 2010, and thankfully receive my B12 injections every 6 weeks due to my frequent complaints about fatigue, and the fact that I suffer with neuropathy (dodgy spine - 3 surgeries down).

I feel very fortunate in that I have a GP whom has been willing to gradually reduce the time frame between injections down from the standard 12 weeks to what it is now, but I am still really struggling with fatigue at times. So much so, I literally find it painful to go to work, and waste many a weekend sleeping. My body feels heavy, I can't think straight and walking up a flight of stairs feels like tackling Everest. The fatigue comes and goes periodically, but is always present to an extent. I am only 33, and up until a couple of years ago was very fit and did a lot of hill-walking, which has now become a thing of the past unfortunately. It sounds terribly defeatist, but I just can't do it anymore.

I have managed to get a couple of blood tests done over the last few years with the usual suspects e.g thyroid/iron/liver & kidney function/FBC/CRP etc, and they always come back as "normal" and the whole thing is put to bed again until I muster up the bother (I use that term because I know I won't get anywhere, not because I can't be bothered to investigate things) to consult my GP about it again.

It frustrates me to the point of exasperation at times, because this has a relatively profound effect on my life at times, and as a result I feel downright miserable. I also have chronic back pain and have, of course, been offered anti-depressants, which I accepted for a while, but stopped taking them as deep down I know that I am not clinically depressed - if I could reduce these physical issues I would feel much better in myself. I have suffered with major depression years ago, and know that this is different. I also take regular morphine, which gets flippantly cited as a cause of the tiredness, which could be true to an extent, but I have been suffering with this fatigue for longer than I have been taking morphine.

I am thinking of organising and paying for some blood tests myself, but there are so many options out there, I just don't want to end up wasting my time and money on the wrong type of test. I am also thinking of trying a B12 nasal spray or similar. Other than this, I am not sure what else I can consider really. GP, though fairly sympathetic, does not seem interested in fully addressing these issues (always seems to be the case with Doctors when faced with something that isn't a clear cut diagnosis) and she is probably the best of the lot in at the practice. And to be honest, I very much doubt any of the other GP's in the practice would go against her opinion anyway.

Not sure what I want from this post other than a rant I guess, but any input would be much appreciated.

Many thanks for reading

[clivealive Forum Support]

Hi Cymraes84 my heart goes out to you as I can empathise with you somewhat having had P.A. for 46 years.

Personally I have used a B12 Methylcobamalin "Boost" spray every day for the past couple of years between my regularly prescribed injections with the "feeling" that I do benefit from them although of course I have no "scientific evidence" that the cobamalin is actually getting into the cells and doing me any good.

My with observes that she thinks it does and although I still suffer with brain fogs, burning feet and legs, numbness and unsteady walking I don't seem to have so much of the painful neuropathy as before.

I wish you well.

[Cymraes84 in reply to clivealive]

Thanks for taking the time to respond.

I have heard of people gaining some sort of relief with the sprays etc, but haven't looked into it a great deal up until now. It must be worth a try, don't think I've got anything to lose anyway! I think that the majority of my neuropathy is caused by my back problems and the PA, but the tiredness, cognitive function etc are really difficult to deal with at times.

Do you get your injections every 12 weeks or have you managed to get them more regularly?

Thanks again, and hope you are well

[fbirder]

The first thing is to find out if your fatigue is caused by too little B12. Blood tests won’t help.

You need to keep a daily score of your fatigue level on a scale of 1 to 10 and see how much it varies with your B12 injections. If it is obviously decreasing for a week or more after your injection then you move onto the next step. If the injections don’t help then it’s likely that your symptoms are due to something else.

You start taking supplements between injections. You could try sublinguals, patches, sprays, anything. Mark those down on your symptom diary. Do they help your fatigue?

If not, the next step is to try self-injection. Your fatigue diary should give you a clue as to the required frequency.

That’s what I did. Then I put all the data on a graph and showed it to my GP. He expressed surprise that i could buy needles and syringes from Amazon and B12 from Germany. He finally agreed to prescribe jabs every two weeks.

[Cymraes84 in reply to fbirder]

To be honest, though I have not actively monitored things in the sense of noting my symptoms relative to my injections and plotting them on a graph (though this is a good idea) I am certain that I do not feel much different after my B12 - sometimes I feel worse, sometimes exactly the same, but I have never experienced a notable 'boost' in my energy level, concentration etc afterwards.

I have been receiving the injections for 8 years in total and have been having them on a 6-weekly basis for about 3-4 years now so am well established on that regime, and can't help but think that there could be something else askew. I have read up about various causes of fatigue (far too many to list!) and some people were complaining that the laboratory ranges for certain deficiencies or whatever were considered "normal", but not optimal. It's just very frustrating when you take these concerns to a Doctor only to be fobbed off once you receive a normal blood result. I appreciate that they must see a myriad of patients complaining of tiredness and may get a bit jaded, but it isn't good enough to just leave patients to struggle alone with things because they can't find the answer after a single blood test.

I will take your advice regarding the graph as I have done something similar previously (not for my PA) which might show some kind of pattern. I am also going to give the supplements a try. I know I can't absorb B12 via my digestive tract, but some individuals have had some relief with the spray, and given they are relatively inexpensive I may as well give it a shot. Will also get in touch with a private facility regarding blood tests to see what they recommend - probably the most expensive haha! I think that they offer a type of thyroid test that GP's don't routinely do, and won't offer either - apparently you have to ask for it and even then you could be turned down. Think I may get an appointment with a private GP too, as I think after over 8 years of complaining about this with my regular GP, it could be time to try someone else!

Thanks so much for the advice

[bdole2018 in reply to Cymraes84]

That thyroid test being offered privately is probably free thyroid hormones. NHS will only do Thyroid stimulating hormone at GP level in my area. My GP couldn't even order free thyroid hormone tests even with her guidelines overide powers on the computer system.

[Marz in reply to Cymraes84]

The full Thyroid Testing is TSH - FT4 and FT3 - and to rule out Hashimotos you need Anti-TPO and Anti-Tg results. The NHS rarely tests the FT3 and the second anti-body and so 1,000's are missed. Private testing available in the link below and Medichecks have Special Offers on a Thursday ! These labs are used by 100's and 100's of members on Thyroid UK - due to the inadequate testing within the NHS. Low B12 and Low thyroid go hand in hand - along with LOW folate - Ferritin and VitD - so go for the Testing Bundle that includes them all. Of course the B12 result will be skewed !

thyroiduk.org.uk/tuk/testin...

You can have an in range TSH and so the GP declares you normal - that is only a small part of the story as it is a Pituitary Hormone telling the Thyroid what to do - it does NOT tell you how the thyroid is doing

thyroiduk.org

[Cymraes84 in reply to Marz]

Thank you both for the info regarding the Thyroid tests - I knew there were specific types that are unavailable on the NHS but couldn't recall which ones! I am aware of patients with PA developing other auto-immune disorders - Hashimoto's and adrenal issues being quite common if I recall correctly, so given my B12 levels should be sufficient with the regularity of my injections I can't help but think that something else could be askew.

I did have my Thyroid checked fairly recently, but am pretty sure it was just the standard TSH as you mentioned, which was normal therefore I was sent on my merry way. Funnily enough, I have been looking at the Blue Horizons website, I think I will order a test from them, especially now I have a better idea of which one(s) to go for. I have also used Medichecks before, but I like the idea of being able to arrange for a nurse to come out and get a proper blood draw done.

I have also ordered a Methylcobalamin sublingual spray and some B12 patches to see if they help at all.

Thanks again, much appreciated.

[designer8]

Apologies if this has already been mentioned, but have you had your other B vitamins checked - eg. B9 (folate)? That also causes weakness/lethargy - and is needed to be at an optimum level to work with your B12. If you Google search symptoms of B9 deficiency, there's myriad symptoms that you may have but have never considered would be associated.

[Cymraes84 in reply to designer8]

Ah, no, I don't believe that I have. I did have a blood test about six months ago which checked the usual suspects so to speak (TSH, FBC, liver, kidneys etc), but I don't think it tested for any of the B vitamins bar B12. Many thanks for the suggestion - I'll look into it!

[designer8 in reply to Cymraes84]

FYI - I received my blood results from my GP (my naturopath also received a copy) and the GP was happy with all of them - which I was surprised about, due to my ongoing symptoms. When I saw my naturopath, she had done my pathology report and I was low in so many things (folate, potassium, zinc, and other things I'd never even heard of) but high in copper. I joked with her I was surprised I was a still functioning human!

Most GPs just look at the ranges set by the lab. You might want to research what are the optimum levels, rather than what the lab and your GP says is okay. Eg. my folate was 23 nmol/L (the ideal (naturopathic) range is 38 - 41 nmol/L) and the reference range from the lab is 8.4 - 55.0 nmol/L. 8.4 to 55 is a massive difference. Good luck

[Sleepybunny]

Hi,

Have your Vitamin D levels been checked?

patient.info/health/osteopo...

nhs.uk/conditions/vitamins-...

Marz mentions thyroid testing. Might be worth putting any thyroid results on Thyroid UK forum on HU.

Have you had recent iron tests?

nhs.uk/conditions/iron-defi...

patient.info/health/anaemia...

I am not medically trained.

[Cymraes84 in reply to Sleepybunny]

Pretty sure that my vitamin D levels haven't been tested... well, ever! In terms of my Iron levels, I had assumed that they were done with the bloods I had done a few months back, and of course, they were "normal" so all is well in the eyes of my GP :/ I don't have a copy of my results to hand but could grab them from my GP surgery. Probably wouldn't be the worst of ideas actually. Thanks for the advice - I am going to get some bloods done privately so the more suggestions I can get the better as there is a quite a number of them to choose from!

[Marz in reply to Cymraes84]

Always good to obtain copies of all results with ranges. You can start a file - write on the Results sheet the meds you are taking and any supplements and most of all how you feel. Something to look back on and compare ! It is also enables you to post here with up to date information and check what has been missed by your GP - yes it happens ! The results are legally yours Pop over to the Thyroid UK forum when you have the results for members to comment ...

vitamindcouncil.org

grassrootshealth.net

Have posted a couple of VitD websites - both American - so ensure you change the UK measurement by dividing your result by 2.5 ! It needs to be around/over 100 in the UK.

[Cymraes84 in reply to Marz]

That's ace - thank you!

I will head over to my GP surgery at some point and get a copy of the results.

Am torn between two different blood tests, there is one really comprehensive thyroid one which also includes Vit D, magnesium etc, and there is also a broad spectrum one which includes a ton of investigations (I'll copy and paste below), including TSH, FT4, HbA1C, but nothing else on the thyroid front.

(Total Vitamin B12 serum, Vitamin D [25 OH], Ferritin, Folate) as well as Full Blood Count (ESR), Sodium, Potassium, Chloride, Bicarbonate, Urea, Creatinine, Bilirubin, Alkaline Phosphatase, Asperate Transferase, LDH, CK, Gamma GT, Total Protein, Albumin, Globulin, EGFR, Calcium, Corrected Calcium, Phosphate, Blood Glucose, Uric acid, Total Cholesterol, Triglycerides, HDL, LDL, Iron, TIBC, Transferrin Saturation,TSH, FT4, HbA1C.

Thanks for your help, much appreciated

[Marz in reply to Cymraes84]

thyroiduk.org.uk/tuk/testin...

The above link takes you to the companies doing the tests ! - as posted in the earlier reply. The tests I have detailed before are the ones needed along with B12 - folate - Ferritin and VitD. They also include other bits and pieces in Thyroid 11 with Medicchecks I believe. I live in Crete so do not have any hassle with GP's as I can have the tests I want or need ...

I appreciate you do not need B12 - but difficult to exclude in a bundle !

Have all the others if you feel the need

[Cymraes84 in reply to Marz]

Oh lovely - I bet you don't have any problems with vitamin D either living in Crete! Thanks Marz

[Marz in reply to Cymraes84]

Interesting - both Hubby and I have Hashimotos and after 4 years of living here we tested insufficient for VitD ! As we age metabolism of D slows ...

[Sleepybunny]

Hi again,

"Iron levels, I had assumed that they were done with the bloods I had done a few months back, and of course, they were "normal" so"

I learnt to always get copies of all my blood test results and not to trust being told everything was "normal" unless I had copies in my hand. On several occasions, I found abnormal and borderline results on copies despite being told everything was normal or no action required.

In UK , you are entitled to get copies of your results. GP surgery can only refuse if they feel that giving you results could cause you harm. Some UK Gp surgeries have online access to a summary of results/records. Important to remember that it is just a summary and may not have all the info wanted. Details about online access will be on your surgery website.

Access to Medical Records (England)

nhs.uk/NHSEngland/thenhs/re...

nhs.uk/chq/pages/1309.aspx?...

Access to Medical Records (Wales)

nhsdirect.wales.nhs.uk/life...

citizensadvice.org.uk/wales...

Access to Medical Records (Scotland)

nhsinform.scot/care-support...

Blood tests

b12deficiency.info/b12-test...

Macrocytosis

patient.info/doctor/macrocy...

Full Blood Count and Blood Film

labtestsonline.org.uk/tests...

patient.info/doctor/periphe...

Folate Deficiency

patient.info/doctor/folate-...

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no [phone] answerphone

PAS support groups in UK

pernicious-anaemia-society....

B12 Deficiency Info website

b12deficiency.info/

UK B12 Blogs

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

B12 books I found useful

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK b12 guidelines.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive with lots of case studies.

[Cymraes84 in reply to Sleepybunny]

Thanks so much for all the links, much appreciated! I always get my MRI results etc but have never bothered getting blood test results, but should do so really, because as you say I am entitled to them. And now you mention it, I remember spotting a result that was flagged as abnormal on the screen one time years ago, but when I enquired about it the GP just said it was fine. You always get results as standard with any private procedures, but with the NHS you are assumed to have the brain capacity of a loaf of bread so they don't routinely hand them out do they.

I'll pop over to the surgery and ask the receptionist to print the recent results out for me. In all fairness, they are not at all awkward about giving you copies of test results etc, it's just that you have to ask. I have borderline lost the will to live with my GP on this front to be honest, hence I am going to get some bloods done privately. They are very supportive of my back problems to be fair, but won't entertain the notion of investigating this fatigue etc. It's funny in a way because they have actually remarked that they don't see me out walking much anymore (rural practice - everyone knows everyone!) to which I responded that I just have the energy anymore, but I may as well have addressed the wall.

Trying to fathom which blood test to go for now, but have whittled it down to a choice of two!

Thanks again

[Marz in reply to Cymraes84]

Hope all goes well. When you have your thyroid results post them on Thyroid UK for comments 😊