Exercise: Hi everyone, After numerous... - Pernicious Anaemi...

Pernicious Anaemia Society

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Exercise

Hi everyone, After numerous trips to my GP and my B12 being a constant 132 and folate 2 my doctor has finally advised hyroxocaobalamin injections which will hopefully start next week. I am keen to start exercising and have signed up to a kind of boot camp (3 times a week group exercise and a detox diet) but i'm concerned if this is the right thing to do. I would appreciate your advice

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Mrs_

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Other UK b12 documents

I'd recommend reading whole of BSH Cobalamin and Folate Guidelines.

BSH Cobalamin and Folate Guidelines

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

BMJ B12 article

bmj.com/content/349/bmj.g5226

BNF British National Formulary Chapter 9 Section 1.2

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

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

Outlines UK B12 treatment. Treatment info is also in BSH Cobalamin and Folate Guidelines.

Treatment for B12 deficiency without neuro symptoms is 6 B12 loading jabs over 2 weeks followed by a jab every 3 months.

Treatment for B12 deficiency with neuro symptoms is a B12 loading jab every other day for as long as symptoms continue to get better followed by a jab every 2 months.

Do you have any neuro symptoms eg tingling, pins and needles, tinnitus, memory problems, balance issues plus other possible neuro symptoms? See Symptoms lists .

B12 books I found helpful

"What You Need to Know About Pernicious Anaemia and Vitamin 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 book about B12 deficiency with lots of case studies.

PAS (Pernicious Anaemia Society)

If you suspect PA or have a PA diagnosis, it might be worth joining PAS. They can offer support and info.

pernicious-anaemia-society....

PAS tel no+44 (0)1656 769 717 answerphone

PAS members can access details of PAS support groups. there are several in UK.

pernicious-anaemia-society....

B12 blogs

There may be relevant stories on Martyn Hooper's blog about PA and B12 issues.

martynhooper.com/

Also an interesting blog on B12 Deficiency Info website

b12deficiency.info/

I'd recommend reading about B12 deficiency as my personal opinion based on my experiences is that B12 deficiency is not always as well understood by doctors as it could be.

Misconceptions about B12 deficiency

stichtingb12tekort.nl/weten...

I'd also suggest looking at fbirder 's summary of b12 documents. Link in third pinned post.

Lots of other b12 info in pinned posts on this forum.

I am not medically trained just someone who has struggled to get a diagnosis.

I wish you luck but would suggest talking to GP for advice on exercise.

It can take quite a while for some people to show improvement once they start B12 treatment. Some people find their symptoms worsen at start of B12 treatment for a while.

Mrs_• in reply toSleepybunny7 years ago

Hi thanks for the reply. The range is

Vit B12 (range 211-911)

Folate (range >4.0)

The dr has put me on 5mg of folic acid daily. As for symptoms I have had neuro symptoms for many years but numbness and bumping into things and memory seem to bother me most.

I'm just on one 1 injection every other day for 2 weeks then one every 3 months.

I have not been told a cause or had any other bloods as was told to change diet so this was a retest. Told to go back in 3 months for more bloods.

I strongly suspect that I am hypothyroid but the dr doesn't agree as my trh is only 4:9 but has steadily increased over the last few years and I have a nodular goitre too.

I will look into your suggestions.

Thanks again 😊

Marz• in reply toMrs_7 years ago

Your TSH indicates your thyroid is struggling. As a result your FT4 & FT3 could be low in range. T3 is the Active hormone needed in every cell of your body and exercise uses up valuable T3 making symptoms worse. You also need thyroid antibodies tested to rule out Hashimotos - TPO & Tg

thyroiduk.org

Private home testing available in the above link if you feel your GP us not helpful.

Mrs_• in reply toMarz7 years ago

thanks for replying. The Dr just tells me that my TRH is way within limits so that its not a problem so maybe private is the way to go.

thanks again

Marz• in reply toMrs_7 years ago

If you have time to click onto the link I posted above - there is a heading *Understanding Test Results* - where you will see that a TSH over 2 indicates Hypothyroidism. Thyroid Stimulating Hormone is from the Pituitary Gland and tells you diddly squat about the thyroid and how it is functioning. You need the FT4 & FT3 testing along with anti-bodies TPO & Tg.

Sadly your Doc will keep you unwell so read and read and take control 😊😊

Mrs_• in reply toMarz7 years ago

thanks will take a look

Sleepybunny• in reply toMrs_7 years ago

Hi again,

"As for symptoms I have had neuro symptoms for many years "

Untreated or inadequately treated b12 deficiency can lead to permanent neurological damage including spinal problems. I ticked all my symptoms on PAS checklist (Link in my post above)and gave a copy to GPs.

PAS news item on Neurological Consequences of PA

pernicious-anaemia-society....

Is GP aware that untreated or inadequately treated B12 deficiency could lead to SACD, sub acute combined degeneration of the spinal cord. There is an article on SACD available to PAS members on PAS website. I believe some forum members who have struggled to get correct level of treatment for B12 deficiency with neuro symptoms have shown this article to their doctors.

Blog post from Martyn Hooper's blog about PA that mentions SACD.

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

My understanding (I'm not medically trained) of current UK B12 guidelines is that you should have had an Intrinsic Factor Antibody (IFA) test and be on the neurological regime for B12 deficiency.

Might be worth getting copies of your B12 results where it says 132 and looking closely to see if there is a note from lab who carried out test to see if IFA test is suggested. You could then check with GP if this was done.

"Vit B12 (range 211-911)"

" After numerous trips to my GP and my B12 being a constant 132 and folate 2 "

I'd like to say I am shocked by the fact your B12 level was significantly below range for a long period and your GP did not start treatment but sadly there are similar stories to yours on this forum most weeks, I feel upset on your behalf.

Please think about contacting PAS (Pernicious Anaemia Society) if you think PA is a possibility.

PAS phone no. in my post above. May take a few days to get a response. PAS can be busy and they may not have the resources to help non-members. Membership costs £20 a year.

"I strongly suspect that I am hypothyroid but the dr doesn't agree as my trh is only 4:9 "

I'd suggest putting all your thyroid results on Thyroid UK forum on HU.

Do you have any blood relatives with PA or B12 deficiency or other auto-imune conditions? If yes, does GP know?

Auto-immune conditions in the family are a risk factor for an individual developing a auto-immune condition.

Diet

"as was told to change diet "

I'm assuming your GP thinks your B12 deficiency is related to diet.

What was your diet like originally? Being vegetarian or vegan can be a risk factor for developing B12 deficiency. B12 rich foods include meat, fish, shellfish, eggs, dairy.

It is possible to have more than one cause of b12 deficiency at the same time eg a vegetarian with low b12 diet might also have PA (pernicious anaemia) or Coeliac disease and there are other possible causes.

Have you ever been tested for Coeliac disease?

Sometimes UK doctors only do one test for Coeliac antibodies but NICE guidelines for Coeliac disease suggest two first line tests .

1) tTG IgA and

2)total IgA

Total IgA is needed to check if someone has IgA deficiency because people who have IgA deficiency will not make the tTG antibodies and will need alternative tests forCoeliac disease.

coeliac.org.uk/coeliac-dise...

NICE guidelines Coeliac disease

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

"The dr has put me on 5mg of folic acid daily."

I'd suggest reading Management section in this link about folate deficiency asap.

patient.info/doctor/folate-...

Unhappy with treatment?

Link about writing letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 1 is about undertreatment of neuro symptoms.

CAB

citizensadvice.org.uk/health/

HDA patient care trust

hdapatientcaretrust.com/

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

Mrs_• in reply toSleepybunny7 years ago

thanks again, i will have a read and will follow your suggestions. the only autoimmune disease in the family is MS that my Nan had. The Dr is aware. Ive read the Martyn Hooper blog - how upsetting. I too was very active until I could no longer recover from exercise or would be too stiff to move sometime starting whilst exercsiing and then for days later. My diet was normal so not sure why I was told to try I'm not vegetarian although I was as a child.

Thanks again for taking the time to reply youve been a great help

Sleepybunny• in reply toMrs_7 years ago

Hi,

Interesting that you mentioned MS.

I have read of cases where PA and B12 deficiency were misdiagnosed as MS. MS is mentioned in the PAS news item about neuro consequences of PA (link in one of my posts above).

Sally Pacholok's book "Could it Be B12" has a chapter about MS and B12 deficiency.

Misdiagnoses of B12 Deficiency

b12deficiency.info/misdiagn...

"My diet was normal so not sure why I was told to try I'm not vegetarian "

The fact that you have a normal diet and are not vegetarian or vegan makes the possibility of B12 deficiency being diet related less likely and more likely that there is an absorption problem eg PA, Coeliac disease or other absorption problem.

Some medications can interfere with folate and B12 metabolism. See Section on Drug Induced Causes in link below.

b12deficiency.info/what-are...

Still struggling to understand why you have not had an Intrinsic Factor Antibody test.

Are there other GPs you could see? Some people get private treatment.

If this is not an option (don't forget HDA pct charity) then best bet might be to try to educate GP.

I gave my GPs

1) copy of PAS checklist PDF with all my symptoms ticked

2) Copy of BSH Cobalamin and Folate Guidelines

3) Copy of Martyn Hooper's book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency"

I also wrote letters, see link in post above about writing letters to GPs.

Be warned though, that sometimes giving info or writing letters to GPs can irritate some of them and lead to problems with doctor/patient relationship.

I was unable to get treatment for B12 deficiency symptoms for many years and in the end as an absolute last resort I chose to self treat as I was scared about further mental and physical deterioration.

If your GP seems willing to read extra info, there is a section on PAS website for Health professionals. Health Professionals can join PAS as associate members for free.

pernicious-anaemia-society....

PAS can sometimes intervene on behalf of PAS members. Think it's probably easier for them to help someone with a confirmed diagnosis of PA but not all PAS members have a PA diagnosis partly due to difficulty in getting diagnosed.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769 717 answerphone

Gambit62Administrator7 years ago

exercise should be fine - though you could check with your doctor if you are unsure - take it carefully if you have anaemia at all and make sure that whoever is leading activities is aware that you have a condition that could affect your energy levels - though I suspect that may be true of many there.

Hope it goes well

Mrs_7 years ago

Thanks for replying. I was unsure if tell the instructor as he only asked about joint problems.

Thanks again

Mrs_7 years ago

thanks I will speak to my nurse

Polaris7 years ago

I've just finished another interesting book on B12 deficiency, with a chapter relating to exercise and how many patients with B12 deficiency together with neurological symptoms reported participating in athletic exercise prior to the illness.

Personally, with such a low B12 and to be on the safe side, I would go easy on exercise for the time being, to give the injections (hopefully every other day as per BNF) a chance to work. I and a few others on the forum noticed a relapse of symptoms after overdoing it.

I hope all goes well for you now.

Mrs_• in reply toPolaris7 years ago

Thanks for replying. I went to my first workout session yesterday and started a healthy diet too. I feel quite stiff today which I believe is normal and it wasn't too tiring. I'm going again tomorrow and on Friday and my injections start on Monday. I will just go at my own pace and see how I go