Fatigue : I'm so tired. I'm exhausted... - Pernicious Anaemi...

Pernicious Anaemia Society

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Fatigue

Peppermints profile image
β€’21 Replies

I'm so tired. I'm exhausted. I could cry I'm so tired. The side effects of exhaustion are something I cant explain to my husband. Depression, anxiety and lack of self worth which then turns into a vicious cycle.

I hold down a more than full time job, 2 kids and everything else that goes hand in hand with general life.

I've had my first b12 injection today and due another 5.

Also on prescription vitamin D and gabapentin for nerve pain.

Someone please tell me it gets better.

Is there anything I can do extra.

I dont drink coffee or smoke, have a healthy diet but like the odd wineπŸ·πŸ€¦πŸΌβ€β™€οΈπŸ˜‚I have just purchased extra vitamins and thinking about a vitamin b12 spray. Is that too much?

Tia

From a very tired 39 year old.

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Gambit62 profile image
Gambit62Administrator

Good to start trying the oral supplements at the same time as having loading doses - and there aren't any upper limits, but unfortunately oral doesn't seem to work for many people.If you have neurological symptoms then there is a more aggressive treatment - the loading doses should go on until your symptoms stop improving and then if being treated with hydroxocobolamin you would be looking at at least every other month for injections.

Things can get a bit worse before it starts to get better - you may get colds where your nose runs like it hasn't done for years ... and the aches and pains may seem worse but it is part of every process that needed B12 to run efficiently starting to run again.

deniseinmilden profile image
deniseinmilden

Welcome to our group.

Almost everyone here knows what you are going through. The good news is that with enough B12 and supporting supplements you will improve hugely over time and be able to lead a much better life.

It does take time to recover but that means keep looking forward to more and more improvements as you go on. You may need to have much more B12 than your Dr thinks but it is safe and can be done.

Keep with us and read lots on here to get lots of information and help. You are not alone - we understand and will support you.

Here's to better things to come!

(Though we'll be toasting you with non-alcoholic beverages because most of us find that alcohol depletes our B12 - sorry!).

ssiddi2 profile image
ssiddi2

hang in there, it took me 3 months of weekly injections before i started feeling better significantly. don't give up on the injections.

Marz profile image
Marz

Sorry to read you are struggling - hopefully sunnier days ahead.

I have read that taking a GOOD B Complex gives you the Folate you need and keeps all the B Vits in balance.

What was your VitD test result ? Often the GP prescription is too low. Also VitD is fat soluble so best taken with a meal containing good fats. To overcome this I take a gel capsule containing olive oil.

There are important co-factors too - magnesium and VitK2-MK7. Can explain more if needed.

You mention buying supplements. Is one a multi-vit ? If it contains iron or calcium then I fear it will negate the other ingredients. The supplement world is a minefield .... πŸ€”

So much good advice on this forum but I would like to add - has your thyroid been checked as it can be the cause of fatigue and low vitamins and minerals. I have Hashhimotos and a B12 issue due to surgery.

You are entitled to have copies of all test results ' good to monitor your own progress and to check what has been tested .... and missed ! Perhaps you have on-line access ?

And yes you will soon feel better 🌻

Jillymo profile image
Jillymo

You are such a young pup to be feeling tired all the time, I assume your just starting your loading dose and then like most it will be 3monthly injections. I not only used B12 sprays I slapped B12 patches on too, anything that helped me to function.

Some feel better after the first lot of injections where as others it is a slow process so be patient. If after a few months you still feel your in need of extra B12 ask your Dr for 2monthly injections. Not many of us get the treatment we need for our neurological symptoms - which should be every otherday but thats the NHS for you.

Be your own judge of improvement and keep notes, You can learn a lot about the condition on here and get support from other's.

Keep your chin up things will get better but be patient and keep the vits going in.

Peppermints profile image
Peppermints

Thank you so much everyone. I was having such a bad day yesterday!Here are just some of my bloods

Text
Marz profile image
Marzβ€’ in reply toPeppermints

Your Ferritin looks fine. Folate would be better mid-range. No VitD result ?

Thyroid results ?

Peppermints profile image
Peppermints

I was at 31 and 30 is the deficient levelπŸ€¦πŸΌβ€β™€οΈ now on prescription vitamin D too. I've bought more b12 supplements too.

Text
Marz profile image
Marzβ€’ in reply toPeppermints

How much has your GP prescribed for VitD ? I would suggest at least 5000 iu's daily along with important co-factors Magnesium and VitK2-MK7. Did your Doc mentions these ?

B12 will not improve Folate - taking a good B Complex like Thorne Research will help. Raising levels can take time.

Do you have your thyroid results ?

Peppermints profile image
Peppermintsβ€’ in reply toMarz

So it looks like my thyroid is ok but I have high cholesterol.I also had a hba1c test and that's high too. So it looks like I'm prediabetic and have high cholesterol πŸ€¦πŸΌβ€β™€οΈ none of which has been discussed....

Text
jade_s profile image
jade_sβ€’ in reply toPeppermints

It does get better, i promise you :) You may need continued alternate day injections if nerve issues persist.

I was recently discussing our pre-b12 hba1c levels with my mother & sister. Before we started on injections, our a1c had all progressively gotten worse. After injections, it dropped down back to normal. I suspect either it was falsely high due to the fact that RBCs are larger in B12D, or injections helped carbohydrate metabolism, or maybe a bit of both. I would get it retested after 4-5 months but in the meantime if you are worried you can get a home blood sugar monitor and test before and 1 and 2 hours after eating. I like the site bloodsugar101 bloodsugar101.com/am-i-diab...

High cholesterol is usually thyroid. You might want to get a private test and get the full panel - ft3, ft4, antibodies. The thyroiduk HU group has links and discount codes on private testing. TSH looks ok but if you have Hashi's, the TSH alone can be misleading. You could also wait and retest in a few months to see if fixing b12 helps.

Marz profile image
Marzβ€’ in reply toPeppermints

The TSH - thyroid stimulating hormone is from the Pituitary Gland and tells your thyroid to secrete hormones. So without the FT4 & FT3 being tested with the TSH you have no idea how your thyroid is performing. Also test Anti TPO & Anti Tg to rule out Hashimotos. These tests are very rarely done in the NHS - so go to

thyroiduk.org

...where you will find information about the Thyroid and about Home Testing. Medichecks currently has a 20% discount. Please ask if you need help .... 🌻

Narwhal10 profile image
Narwhal10

Hi Peppermints,

Welcome.

I’ll be brief (as know you are exhausted). Fatigue is poorly understood, often misdiagnosed). You are juggling a lot with work, children and home.

Know you are on the road to recovery. I hope gabapentin is of some use.

Maybe for your husband, so he can have some understanding of PA/vitamin B12 deficiency, it maybe worth joining the PA Society (Β£20.00 a year silver membership) and having access to quick, easy to read information. πŸ€·β€β™€οΈ

Best wishes

Cobalt1312 profile image
Cobalt1312

Welcome Peppermints! So glad to meet you and so sorry for the circumstances!!

It sounds to me like you are doing a great job advocating for yourself and taking all the steps you need to succeed, so I hope you can take a small break from your grueling list of duties and give yourself a well deserved pat on the back!

I'm 34 and was just diagnosed with PA late last fall. I struggle with fatigue as well that is sometimes crushing (physically, emotionally, psychologically, relationally, you name it!). You are not alone, hang in there!!

I have made significant gains in the last 4 or so months since I started getting B12 injections. Recovery can be a bumpy road. The more I feel like myself, the more I want to do and there is a fresh sting of frustration with each new small expansion of my ability/health that reminds me I'm still recovering.

Cheering for you, sending warm thoughts and strength!!

Peppermints profile image
Peppermints

Thank you al for being so welcoming!!!

Sleepybunny profile image
Sleepybunny

Hi,

I'm in awe that you are holding down a job, looking after children and I'm guessing doing many other things....you deserve a medal.

It should get better if you get enough B12 but can take time especially if you've been ill for a long time.

Some forum members resort to self injection if NHS treatment is not enough for them.

There are forum threads about this.

Some GPs and specialists lack understanding of B12 deficiency so when you've got a bit of precious energy spare, I suggest doing some reading about B12.

Arm yourself with useful info in case you meet an unhelpful health professional.

What does your GP think has caused your B12 deficiency?

I've left some links about B12 deficiency that might be useful....I suggest you take at least a week to sift through it so it's not so overwhelming. It's possible that some links may have details that could be upsetting.

If you have a PA diagnosis or suspect that you might have PA, worth joining PAS who can offer support and pass on useful info.

PAS membership is separate to membership of this forum.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS support groups in UK

pernicious-anaemia-society....

PAS is hoping that face to face meetings will restart this year.

Testing for PA

pernicious-anaemia-society....

I have also read that a pepsinogen test may also be useful in diagnosing PA.

PAS website has lots of useful articles and a page for health professionals that your GP may find helpful.

pernicious-anaemia-society....

pernicious-anaemia-society....

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

Next link about causes is from a Dutch B12 website

b12-institute.nl/en/causes-...

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Link has letter templates to help people write their own letters to GP.

Point 1 is about under treatment of B12 deficiency with neuro symptoms present.

Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.

Best to keep letters as brief, to the point and polite. Harder to ignore a letter in my opinion.

Keep copies of any letters sent or received.

The risk of developing neurological damage is increased if treatment is inadequate.

UK B12 documents

NHS article about B12 deficiency (simply written)

nhs.uk/conditions/vitamin-b...

BSH Cobalamin and Folate Guidelines (aimed at health professionals)

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

Summary of BSH Cobalamin and Folate Guidelines (main points from above document)

pernicious-anaemia-society....

Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.

stichtingb12tekort.nl/engli...

BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises need to treat patients who are symptomatic even if their B12 level is within range.

Next link has two patterns of treatment for B12 deficiency in UK

1) for those without neurological symptoms

2) for those WITH neuro symptoms

BNF Hydroxocobalamin

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

If you have neuro symptoms, are you on the treatment pattern for those with "neurological impairment"?

NICE CKS B12 deficiency and Folate deficiency

cks.nice.org.uk/topics/anae...

There are currently new NICE guidelines in development for Pernicious Anaemia and B12 deficiency. These should be published in 2023. Your GP may find this interesting.

nice.org.uk/guidance/indeve...

If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment (over 40 pages).

Have you been tested for coeliac disease?

Guidelines below suggest that anyone with unexplained B12, folate or iron deficiency should be tested for coeliac.

NICE guidelines Coeliac Disease

nice.org.uk/guidance/ng20/c...

If you've been tested in past and had a negative result, check that your doctor followed the recommended diagnostic process...some don't. It's possible to get a negative result and still have coeliac disease in some cases.

More on Coeliac UK website

coeliac.org.uk/home/

Local B12 deficiency guidelines

Each CCG (Clinical Commissioning Board/Health Board/NHS hospital trust in UK is likely to have its own local guidelines on treatment/diagnosis of B12 deficiency.

Worth tracking down the local guidelines for your area of UK and comparing the info in them with BNF, BSH and NICE CKS links above.

Some local guidelines have been posted on forum so try a search of forum posts using terms "local guidelines" or try an internet search using "name of CCG/Health Board B12 deficiency guidelines" or submit a FOI (Freedom of Information) request to CCG/Health board asking for access to or a copy of local B12 deficiency guidelines.

If you want to know why I urge UK forum members to find out their local B12 deficiency guidelines, read the blog post below.

b12deficiency.info/gloucest...

Two useful B12 books

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

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).

UK treatment info in book is out of date. See BNF hydroxocobalamin link.

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

Very comprehensive with lots of case studies.

Films and videos about PA and B12 deficiency

PAS conferences

pernicious-anaemia-society....

Films about b12 deficiency

b12deficiency.info/films/

B12 article from Mayo Clinic in US

ncbi.nlm.nih.gov/pmc/articl...

Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.

I am not medically trained.

Thought this link might be helpful if your children are under 5.

Home Start

home-start.org.uk/

Sleepybunny profile image
Sleepybunnyβ€’ in reply toSleepybunny

Think link below will take you to guidelines for your area.

Click on Haematology tab which will take you to a link to B12 guidelines

uhdb.nhs.uk/shared-care-pat...

Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, more UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.

Some links may have details that could be upsetting.

Some of the info will be specific to UK.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

Peppermints profile image
Peppermintsβ€’ in reply toSleepybunny

Lots of reading for me! Thank you so much for taking the time to share this information with me 😊πŸ₯°

Sleepybunny profile image
Sleepybunnyβ€’ in reply toPeppermints

Hi again,

Link about "What to do next" if B12 deficiency suspected or recently diagnosed.

b12deficiency.info/what-to-...

Referrals

In case it's not in the threads I've linked to, have you been referred to any specialists?

If you need to see a specialist, you may need to give your GP a nudge....referrals are expensive for GP surgeries and in cash strapped times, GPs may be reluctant to refer or constrained by local guidelines.

I used to put referral requests into brief letters to GP along with outline of why I felt I needed referral eg symptoms list and backed up by evidence that supported request eg quotes from UK health documents. See document links below.

Be warned that some specialists lack understanding of B12 deficiency so seeing one is no guarantee of better treatment.

NICE guidance Suspected Neurological Conditions

nice.org.uk/guidance/ng127

NICE when to refer B12 deficient patient to neurologist/haematologist/gastro-enterologist

cks.nice.org.uk/topics/anae...

Apologies for firing so much info at you.

Your story struck a chord in me....I was a mum with young children who was exhausted and in my case only able to work occasionally. My illness greatly impacted family life and I struggled with guilt.

There was also a long period in my life when family members struggled to understand what I was going through. This was partly because I looked "normal"....I felt I was acting all the time, pretending to be normal. My blood results did not give clear evidence and PA and coeliac tests were negative.

I did have one below range result for which I had 5 or 6 loading injections then nothing else and at the time I trusted my GPs that I didn't need any more. When later I realised I had not been treated correctly, I asked for B12 injections to be restarted but was refused on several occasions. In the end when I had got to the point of dementia symptoms and spinal symptoms, I was forced to treat myself .

I hope you have caring GPs but if they're not, be prepared to challenge them as your physical and mental health may depend on it.

I want you to have the information you need to challenge health professionals who lack understanding.

I had many symptoms due to the B12 deficiency being unrecognised for so long and count myself lucky to have avoided major neuro damage although have some mild permanent symptoms.

If B12 deficiency is caught early enough then I think many patients make a good recovery with adequate treatment.

This blog post is about helping family to understand.

b12deficiency.info/to-help-...

I'll just point out that the person who wrote this letter uses the term "pernicious Anaemia" as a general term for B12 deficiency. PA is an auto immune condition.

PAS article on difference between PA and B12 deficiency

pernicious-anaemia-society....

Peppermints profile image
Peppermintsβ€’ in reply toSleepybunny

Wow. I've read so much. This really is invaluable information. People should be made so much more aware if all of this. It blows my mind....Thanks everyone.

P.s had my 2nd shot yesterday πŸ’‰πŸ’ͺ🏻🀞🏻

JanD236 profile image
JanD236

Yes it does get better! Once you’re on regular injections and find the right frequency for you, you can be hopeful your life will return.

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