New member - just completed loading injections B12. Lots of concerns - please help!

Allergies, blood and immune system
1

Hi, I am looking for some advice on concerns I have.  I had my blood tested a month go after three months of feeling lethargic, breathless, dizzy, suffering infection. I visiting my GP many times and was told ear infection then virus.  I was so breathless walking to my office building my lips turned blue so I rushed back and they did bloods.

They found dangerously low iron and B12.  I was taken to hospital and given four pints of blood.  My levels didn't rise enough and they decided it was B12 deficiency so I was given six jabs over 12 days.

i completed last week and my energy is amazing (appetite too!) I have never felt so good.  My GP says tablets are no go as I don't absorb B12 so I need jabs every 12weeks for life.

i have had some acne since my last jab on the loading dose but thesis settling.  However my husband kindly pointed out this eve that he can see my scalp (where my crown is) I hadn't noticed this or any increased hair loss.  However he is right it's thinned. I have read that the condition can cause this.

My questions are: 

Has anyone else had hair loss, if so can you take any vits to help with this and did the B12 jabs help it recover

Also when having the jabs has anyone found 12 weeks to be too long? My GP said see how I feel might need them every 10 weeks if I feel lethargic before 12 weeks comes round

My iron was low too and I didn't have much of it in my diet and the hospital said the B12 issue would be hindering the iron. I have started t have green veg nuts etc regularly.  Would you take iron tablets too or wait and see what the bloods says before the first 12 weekly jab to see how the iron is naturally?

Sorry for the huge post - Many thanks.

2

Well my hair is thinner but I don't attribute it to B12. You most likely did not absorb several things. The answer is to wait and see.

Many require earlier followup B12 - it is a common complaint covered in many threads. You can absorb orals or sublinguals it is just at a lower rate ie 1% rather than 20% from an injection regardless of intrinsic factors.

As to iron your levels were obviously very low to get to the tranfusion stage. However your doctor has different tests for the types of iron and where they are to monitor your blood. Therefore he/she is best placed to advise you in the light of ongoing testing. I would check if vegetables and nuts contain the amount of absorbable iron you think. Popeye and his spinach was nonsense even though it is a very good food for other reasons.

3

Hi Jenny,

Your GP is probably right about B12 tablets being little help, not just IF you have PA, but also because it would take too long to get enough B12 into you that way.

That's probably the only thing they've got right.  GP's are woefully ignorant about B12 deficiency's cause and treatment in this country.

HAVE YOU BEEN TESTED FOR PA?  Iron levels (haemo, red cell and ferritin) and B12 levels can be very low for a variety of reasons, and it is not enough to dismiss it as "probably PA" or your diet.  FIND OUT.  Low iron can be caused by anything from heavy periods to stomach ulcers and (apologies) cancer.

Quarterly injections are unlikely to be enough in a case that sounds as severe as yours - and DON'T accept that this is all the NHS will give you.  That's nonsense.

I have mild PA, low B12, low ferritin, and my periods stopped - not because of the menopause (which has since kicked in) but because I had low B12 and ferritin.  Nature's way of saving iron is to cut off your periods!  Vegetarians and anorexics get the same effect.  I wonder how many cases of early menopause could be prevented by adequate B12 and iron..................but I digress.

Do you have heavy/frequent periods?

I now receive MONTHLY jabs of B12 from the NHS and feel pretty good.  Get repeated blood tests from you GP, and ask for the readings on B12 and all iron indicators (see above) on paper.  DON'T accept British NHS "normal" range readings for B12.  They'll be happy with you reading around 200.  You want to get to between 500 and 700 - the internationally accepted levels (Japan and the USA). 

Low iron/B12 is implicated in senile dementia (it is already known to cause irreversible neurological damage).  There's very little senile dementia in Japan........

I am apalled that your GP has not prescribed high dose iron tablets - this is absolutely BASIC medicine.  How are you supposed to re-build your health with a low-iron diet and no iron supplements???

The acne will pass, but the hair loss is a serious issue.  Lack of oxygen to the brain causes brain damage.  Lack of oxygen to the scalp kills hair follicles and causes permanent hair loss.  It's an indicator!

I think you are dealing with a very careless GP (possibly male?) and an overworked, understaffed NHS hospital.  Neither is looking at the bigger picture or the long term possible problems.  From experience, this is a treatment co-ordination problem, caused by poor communication between hospital and GP.

Make an immediate appointment with you GP:

1)  Ask why you aren't getting iron tablets.  If you are veggie/vegan you MUST have them.  Point out the hair loss.

2)  Fix for a repeat blood test to taken immediately before your next scheduled jab - same day is best.  If it's under 500 ask for more frequent jabs.

3)  Ask for immediate state-of-the-art blood tests to confirm whether or not you have the autoimmune condition Pernicious Anaemia (the tests take weeks to come back).

4)  If you don't get a positive reading for PA (and false pos/neg results CAN occur) then insist on further investigation - probably gastro/endoscopy.  Remember, gastrointestinal bleeding demands urgent investigation and you may wait 3 months for an initial consultation.

5)  If you start to experience returning symptoms before your next jab, INSIST on more frequent jabs - monthly works well.

and

6)  Write a list of questions before your appointments and get answers.  Write down the answers.

Iron tablets (get details of what your GP would recommend) are cheaper from your pharmacy than the NHS prescription fee.  You don't need a prescription.

I don't know how old you are, but if your GP starts whining about practice guidelines and the cost of more frequent B12 jabs to the NHS, remind them what 25 years in residential care with senile dementia might cost the NHS in years to come..........

Don't get scared.  Do research. Take charge.  Get well : )

 

 

4

Hi thank you for your reply. I am 38 had low iron and fainting a couple of times as a teen given iron tablets told due to diet.

I had all the symptoms I mentioned above for about three months. Pushed my GP and finally for bloods done.

I am due a blood test in 3 weeks before my first routine jab she did say if lethargic between jabs will need more often.

She hasn't mentioned iron but I do have some pure iron from the chemist I could take anyway.

I would like to arrange a private appointment and go along with all my results and get a second opinion my surgery has a terrible reputation and I am worried they are not taking it seriously enough.

5

Forgot to say I am on the pill have normal periods nothing changed in that area.

6

Hi Jenny,

I'm not surprised they have a bad reputation.  They deserve it!

You are young, and your periods are under control, so the cause could be diet.  If you eat red meat, egg yolks and dark green leafy veg, you should be getting a decent dose of B12 and iron.  If not, Google up sources of both and add to your diet if you can.

If it's not diet, and the PA tests prove negative, you really need to push for investigation.  I think you probably do have PA, but you can't afford to take the gamble.

If going to an appointment armed with what you can learn from the PA Society website and other reputable sources like this, doesn't get your GP's attention, and some better treatment, then CHANGE SURGERY.  You shouldn't have to pay for treatment as straightforward as this.

I'm guessing they are dismissing you because you've a long medical history of dietary insufficiencies.  OK, it's time for a change, but they need to take an interest in whether that is the ONLY thing causing the problem - and help you address it.

You need high doses of Ferrous Sulphate or Ferrous Fumerate, and you may need Vitamin C to aid absorption - the pharmacist should be able to advise you.  I have bought iron in a citrate form in the past.

Thinning hair at your age is worrying.  There are other possible causes, which is why you need to know if you are low on other nutrients.  Ask you GP for the lab print out of all your test results and compare them with levels published on line.  Generally low levels in other nutrients may be the result of low B12/iron, and these might have some bearing on the hair loss too.

I'm guessing you have a restricted diet.  It's hard, but it's time to learn to love greens, eggs, and red meat.  I breed geese, and their eggs are a brilliant source of B12, as are duck eggs (and really delicious, too).  Pills are all very well, but we didn't evolve to live on them........... : )

Best of luck.

 

7

My hair thinned a lot whilst I was anaemic, and then came back again after a few months once I was back to being healthy. So hopefully yours will to.

 

8

Thank you so much for your comment I know it's vein and the main thing is to be well but it was the last straw for me and I am totally devastated at the moment x