waiting 1st 12 week lapse to be over !!!

[Mellowmum44]

hi i have been diagnosed with pernicious anemia had my loading dose and my first 12 week injection not due till 7th august.. feeling terrible noticing problems with brain fog forgetting words for things, feel depressed and completely exhausted work full time as a support worker as well as children and struggling to cope. Dr has said need to wait till august but cant manage till then. want to buy injection online but am not sure were to get them and which are reputable .. so i really would like advice.. sorry to moan not helpful to everybody i know but as i said new to this and feel alone

[Annnon58]

If you scroll down to Brecklandranger post titled " buying online question " some very good answers , . I've just ordered b12 and needles etc as my OH in same boat . Good luck Mellowmum , I feel so hopeful for his recovery now 💉💐

[Annnon58]

Also related posts top right of screen , just click and lots info , best of luck . I'm so great full to this forum

[clivealive Forum Support]

Hi Mellowmum44 go back to your doctor and demand a continuation of B12 loading doses on an every other day basis until there is no further improvement then make it clear to him/her that for P.A. patients injections should be every eight weeks - not twelve - in accordance with both the N.I.C.E and B.N.F guidelines.

Click on the link below then on "Scenario: Management" and scroll down

google.co.uk/url?sa=t&rct=j...

Also ask to have your Folate level checked as this and B12 help your iron to make red blood cells.

I'm not a medically trained person but have had P.A for over 45 years.

I wish you well

[Sleepybunny]

Hi,

clivealive mentions 8 weekly injections which in UK, is for those with B12 deficiency where there are neurological symptoms.

Do you have any neurological symptoms? eg tinnitus, tingling, pins and needles, balance issues, memory problems plus many others

Lists of B12 Deficiency Symptoms

pernicious-anaemia-society....

I gave a copy of PAS Symptoms Checklist to my Gps with all my symptoms ticked plus I added any symptoms not on list.

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

I'd recommend you read the "BSH Cobalamin and Folate Guidelines", link below, a UK document that outlines the diagnosis and treatment of B12 deficiency, it includes PA. Some GPs may not be aware of this document (some of my GPs weren't so I gave them a copy).

b-s-h.org.uk/guidelines/gui...

UK B12 treatment

B12 treatment info can be found in "BSH Cobalamin and Folate Guidelines", about a quarter through document and also in BNF British National Formulary Chapter 9 Section 1.2

BNF

bnf.nice.org.uk/drug/hydrox...

cks.nice.org.uk/anaemia-b12...

BNF is a slim book and it is very likely that there is a copy sitting on GPs desk or bookshelf. It clearly states what treatment is required for someone with B12 deficiency with neuro symptoms.

"had my loading dose"

What pattern of loading doses did you receive?

Six injections over 2 weeks is the standard pattern for those with B12 deficiency without neuro symptoms.

For a person with neuro symptoms, the pattern of loading injections is more intensive...an injection every other day for as long as symptoms continue to get better (this could mean loading doses for a period of weeks even months if a person continues to improve).

There are plenty of people on this forum who have had to fight to get correct level of treatment if they have neuro symptoms.

Untreated or inadequately treated b12 deficiency can lead to permanent neurological problems including damage to spinal cord.

Unhappy with treatment?

Link about writing letters to GP about B12 deficiency. Person who runs website can be contacted by e-mail. Details on website.

b12deficiency.info/b12-writ...

CAB

citizensadvice.org.uk/healt...

HDA patient care trust

UK charity that offers free second opinions on medical diagnoses and treatment

hdapatientcaretrust.com/

PAS

It may be worth joining the PAS (Pernicious Anaemia Society).

pernicious-anaemia-society....

In some cases they can intervene on behalf of members.

pernicious-anaemia-society....

PAS tel no [phone] answerphone so messages can be left, may take a few days to get a response.

There are several local PAS support groups around UK. These can be a source of info about helpful doctors and how to manage PA.

pernicious-anaemia-society....

B12 books

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper. Martyn Hooper is the chair of PAS.

He has written two other books about PA and B12 deficiency...I found "Living with Pernicious Anaemia and Vitamin B12 Deficiency" useful as it has several case studies.

"Could it Be b12" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive book about B12 deficiency with lots of case studies.

B12 blogs

There may be stories on these blogs that are relevant to you.

martynhooper.com/

There is another blog on the "B12 Deficiency Info" website.

BMJ B12 article

bmj.com/content/349/bmj.g5226

I am not medically trained, just someone who has spent years trying to find out what is wrong.

[Mellowmum44 in reply to Sleepybunny]

Thank you so much for all this information I have just rang go now and got appointment at 11. Yes got neurological symptoms mostly balance and forgetting words .. I can only describe it as someone talking to me I can hear voice but cantformulate a response in my brain. Frequantfalls I'm only 44 and so worrying . You and other members have been so helpful and am going to follow links .. will take this with me as well to refer to .. here's hoping .. butcant Thank You enough for all the info you have provided .X

[Sleepybunny]

Hi,

Hope your appt. went well.

Have you had a neurology appt. recently?

If you've seen a neurologist, did they perform any tests with your eyes closed eg "romberg test" or other tests for "proprioception problems".

Proprioception is awareness of your body in space. People with B12 deficiency sometimes develop problems with proprioception.

[Mellowmum44 in reply to Sleepybunny]

No not referred to neurologist. Went to gp initially with pins needles in face . Palpitations. Falling over frequently and forgetting words for things . Loads of blood tests and b12 was rock bottom injected me that day. Then started loading dose. Have interactive thyroid which apparently is also auto immune and as diet is very healthy was diagnosed with PA. Doctor admits not very up on it . Have me no info and said be fine once had b12 loading dose of 6 injections. Nurse was more knowledge and gave me a leaflet . Had to fight today to get a b12 injection on Thursday 4 weeks early. Feels it's not PA related even though symptoms improved greatly for three to four weeks . More blood tests thyroid. Liver count and folate. I am on 125mg levothyroxine any way and had condition since 31so know if it's thyroid related. Just feel not listened to. Employer ..husband.. kids don't understand and I work 24 hour shifts as a support worker . I'm exhausted but falling over and language issues brain fog upset me the most x

[Sleepybunny]

Hi,

"and said be fine once had b12 loading dose of 6 injections"

Loading doses for someone with B12 deficiency with neuro symptoms is an injection every other day for as long as symptoms get better..this could mean loading injections for weeks even months as long as symptoms continue to get better.

"BSH Cobalamin and Folate Guidelines" mentions the possibility of a review of loading doses after 3 weeks for those on neurological regime.

Not having right treatment regime could delay recovery and inadequately treated B12 deficiency could increase the risk of permanent neurological damage.

I believe some people on this forum have pointed out the risk of damage to spinal cord to their GPs if not getting correct level of treatment . If you are a member of PAS, there is an article on SACDSC (sub acute combined degeneration of the spinal cord) in PAS library section on website. Other articles on internet.

Story on Martyn Hooper's blog that mentions SACDSC

martynhooper.com/2010/09/21...

PAS

They are helpful and sympathetic but busy so may lack resources to help non-members.

Membership costs £20 for a year. They may be able to intervene by writing letters on members' behalf.

Thery should be able to pass on info about correct treatment for those with PA with neurological symptoms.

There are stories on Martyn Hooper's blog about how PAS has helped people.

martynhooper.com/2017/07/01...

martynhooper.com/2016/04/24...

Letters

Point 1 in link about writing letters to GP about B12 deficiency is about undertreatment of B12 deficiency with neuro symptoms. There is a sample letter on the issue.

b12deficiency.info/b12-writ...

"Doctor admits not very up on it"

I gave my GPs a copy of Martyn Hooper's book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" as it's up to date with UK B12 guidelines.

There is a section on PAS website for health professionals which your GP might find helpful.

pernicious-anaemia-society....

I've learnt that B12 deficiency is not always widely understood amongst some medics and a person may have to educate both themselves and their GP.

Proof of Diagnosis

Is your PA diagnosis confirmed?

May be worth getting copy of medical notes/tests/letters that show PA diagnosis. Positive result in IFA Intrinsic Factor Antibody test is usually considered as diagnostic for PA (possible to have PA with a negative result as well).

healthunlocked.com/pasoc/po...

Some people on forum have had injections stopped at some point and my opinion is that it's easier to argue for them to be reinstated with a confirmed diagnosis.

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

england.nhs.uk/contact-us/p...

nhs.uk/chq/Pages/2635.aspx?...

"Employer ..husband.. kids don't understand "

I tried to get my family to read Martyn Hooper's book (mentioned above) plus I also got his book "Living with Pernicious Anaemia and Vitamin B12 deficiency" and Sally Pacholok's book "Could it Be B12" and left them out but sad to say there wasn't much interest.

There is a film mentioned in this link that might be helpful

b12deficiency.info/b12-writ...

Martyn Hooper talks about how PA and B12 deficiency can affect relationships in his books.

PAS support groups

If you join PAS you can access details of local support groups, I found this very helpful as it was a group of people who understood what I was experiencing.

pernicious-anaemia-society....

[Mellowmum44 in reply to Sleepybunny]

Thanks again have looked at some of links and have ordered books you have suggested . Will join the PA society. Doctor told me PA but said this is likely as underactive thyroid but will establish proof. I dont like confrontation and have been at the gp practise since 1996 bit my regular gp who was lovely has retired. I have seen 2 different gp over my PA and neither of them know me. This makes it difficult for me to be more forceful. Think need to toughen up. Relunctly agreed to bring injection forward to this Thursday. Thank you for all the time taken to answer every point to my previous reply . Between your and wedgewoods care and support you have really helped and made me feel more able to tackle it. X

[Sleepybunny in reply to Mellowmum44]

"I dont like confrontation"

When I was at my worse, I could not state my case coherently due to brain fog so I sometimes resorted to writing polite letters to GPs before appts, outlining what I wanted to discuss. This did irritate some GPs though.

I would have preferred to take someone supportive, who was well-read about B12 deficiency with me and would speak up on my behalf, but that option was not available.

I got to the point that I no longer cared about confronting issues because it got to the point I truly believe I was facing the possibility of permanent damage and mental and physical breakdown as I just couldn't function.

I had exhausted all possibilities of NHS B12 treatment as requests for trials of b12 were turned down and in the end as an absolute last resort I turned to self treatment. I did in the end get NHS treatment after a long time.

"Think need to toughen up"

I came to the sad realisation that the only person who was going to help me was myself.. of course it is different for some people.....and I went from being sad and feeling let down to being angry , which can be a rather destructive emotion. These days I'm more wistful about what might have been.

"Will join the PA society"

PAS may be able to help with advice on employment issues...this is another reason why proof of a confirmed diagnosis might be important.

Might be worth considering joining a union in case of difficulties with employment.

Occupational Health

gov.uk/government/collectio...

Found other info about occupational health online.

[Marz in reply to Mellowmum44]

Hi Mellowmum44 - if you have Hashimotos then it is possible to have other auto-immune issues - PA being one. I am wondering if you have recent Thyroid test results with ranges - maybe you are not being optimally treated. As cwill suggested it could be good to post on the Thyroid UK forum here on HU. Around 58,000 of us sufferers with a story to tell

Docs are so poor at treating the thyroid once diagnosed so there are lots of people more than happy to help/advise. What dose are you on ? Do you have results with ranges for TSH - FT4 - FT3 and Anti-TPO and Anti-TG - thyroid anti-bodies.

I have Hashimotos and a B12 issue

[Mellowmum44 in reply to Marz]

Never told me was hashimotos till diagnosed with PA just underactive thyroid given 125mg of levothyroxine. Nurse told me to take omeprizole as take naproxen for knee issue. Asked gp as nurse said need to protect stomach with PA . Doctor prescribed it but didn't tell me interferes with absorbtionof levothyroxine.. luckily I had for sight to check online and take 4 hours apart. Been inbetween 150 and 125 for last few years but put it up and down every blood test . Just down to 125 after level to high. Got blood test for thyroid and folate as well as liver function tomorrow . Need to check results can I request these from gp

Also take setraline for anxiety as have panic disorder . It's a minefield...and I feel like a hypochondriac but am very logical and actually a usualhappy and optimistic person . Although reading my posts maybe hard tobelieve 🤣🤣🤣

[Marz in reply to Mellowmum44]

Hope all goes well with the blood tests. You need TSH - FT3 and FT4 tested to have the full picture. T3 being the active thyroid hormone so the most important test and rarely tested in the NHS. Your Levo dose should not be altered based on just the TSH - Docs do fear the TSH going too low but it is more important to look at the FT4 and FT3 results for the bigger picture. When they are over range then you could be over medicated and need a lower dose. T4 has to convert into T3 - and sometimes it does not. This happens when levels of B12 - Ferritin - folate and VitD are low in range.

Low T3 levels can also be associated with mood as there are maore receptors for T3 in the brain than any other part of the body. T3 levels when good may help with the panic attacks.

On the Thyroid UK forum here on HU there are over 2000 posts about Hashimotos and it is suggested that being gluten free helps to reduce anti-bodies.

Yes PPI's are designed to be a short course and do affect the uptake of vitamins etc. Lowering the stomach acid when Hypo is often a bad idea as Hypos invariably have low stomach acid due to a lowered metabolism.

As you say it is a minefield and you are NOT a hypochondriac - just someone trying to find answers.

Yes you can request results from the surgery - they are legally yours. You do not have to give a reason - you just want to monitor your own health and progress. Hope all goes well ....

[cwill]

If you also have thyroid issues get all your latest test results, last 5 years is a good place to start, and post your results on the thyroid site.