This issue has been going on for nearly 5 years with my daughter, now aged 28. She has been seen by 2 neurologists, who ruled out MS. The GP said her B12 results of 350 were 'normal' despite that fact that I explained that I am unable to absorb and I have monthly injections and gave a family history. They did not do a antibody check for PA as her results were 'normal' although I said that this does not specifically diagnose PA. Her GP has now referred her to a Gastroenterologist, obviously a long wait in the current climate. I am not sure what a Gastro can help with?
I want to put together a letter for her GP to request a trial of B12 injections to see if her neuro symptoms improve. her original symptoms were loss of feeling in fingers and toes, along with optic neuritis. She now has a lot of hair loss, which I did too.
I also have purchased my own B12 and for a time did self inject, and would love to offer the same to my daughter to see if it helps her symptoms, she has refused this as wants it all to be done via the GP.
If I were to convince her to SI, then her symptoms improved, she could go to her GP and say this and in a way 'prove' her deficiency, any thoughts?
She does have B12 and spray too, which she told her GP she was taking even then the blood results were only 350.
I am crying myself to sleep at night now knowing she is suffering. it is her hair now that has finally pushed her over the edge!
I understand the torment. Have they done her ferritin levels folate vitamin D iron??
My youngest daughter now 30 went through many specialists for years
Monitored fir early signs of cataracts as a child
Dislocated shoulder .
I was forever in a and e waiting for the fracture clinic. Swollen knees twisted ankles . Headache puburty.
Then vertigo at university.
Terribly joint pain.
Coukdnr digest her food.
Then stroke like symptoms.
Like your daughter MRI scans tha5 ruled out MS
Lupus ruled out eventually
It was a process of elimination.
She was on gaberpentin fir pain.
Amitriptyline for a while.
Ectcect
Her B12 and folate and ferritin and vit d when finally tested 'in her boots'
Gastro good to have a look again to rikers out things or perhais rule in PA for your daughter.
Eventually when too ill when teaching. She allowed me to step in more at this time . Driving her to work. Doing food. Watching her get thin. Weak and finally passing out alot. Taking her to OH . Ect. I finally got her to resign as simply too ill.i could see measures going onto place at the school . The head appalling. even though she was rarely off sick. I went to one meeting and the head nearly wet herself as I used to be a union rep. And was very on the ball at the time. But mum hat on more important . Health more important than any job. I hope you can get your daughter to step back /stop get time out to get the right appointments. To get the right diagnosis .
Perhaps you step back for a while and wait . ?? Very hard I know.
I got a referral to The National Queens Square London finally .
They did a whole week of testing.
Not pleasant and made her more ill but necessary.
Her undiagnosed b12 in their opinion damaged her autonomic function.
POTs
Her other diagnosis is HEDs(Ehlos Danlos) no family history
Her low folate and iron also played a strong part in fatigue and body pain and inflammation. That all stemmed from undiagnosed b12 deficiency and megobalastic anamia.
I've put all this as i tended to have a one track mind of Lupus at the time as her heart kept getting monitored too .The more tou read the more the symptoms fit. But the same symptoms fit so many things and cross over.
It took a general medical doctor to take 'interest.
Specialists stay in their 'own world'
So keep going to get a diagnosis.
Get her to list the worst 5 symptoms
Get her to describe her life and health 5 years ago comparing to how.
I'm afraid to say you have to keeo it simple for a doctor to listen and not 'drown' learnt this the hard way.
Any ill adult is scared.
They often cannot think straight.
It's the toughest thing I've done and I've helped many.
Push, push, believe you will find a solution.
Keep your daughter believed, listened to and strong.
See another neurologist.
See another general medical hospital doctor.
It took from 9-18yrs symptoms on and off.
18yrs to 26yesrs(worst continuous symptoms. No respite)
going round different doctors ending up in a and e and then the one bright mind that took an interest .
So I do feel for your position.
See as many doctors as possible even though it may not make sense to you.
The jig saw will hopefully be put together before too much damage occurs.
Then proper treatment.
Hair loss can be thyroid problems or low ferritin amongst other things
I hope you get answers soon.
Get her to read PAS information or anything to see if it makes sense to her.
Wow! So what is the outcome for your daughter now, was it B12 all all along? Hope all has improved. She has been told to take Vitamin D as is deficient in that too. She takes Iron and multivitamins and is a vegetarian but eats reasonably well.She suffers with joint pains and is having physio on her knee for a bursitus cyst I think?
Undiagnosed b12 deficiency and folate caused many problems but not all .Outcome is as stated above
She has regular b12 injections. 10 weekly at present. Asked for 8 weekly !
Perhaps it would be wises to have a fill nutritional blood test that you will probably have to pay for.
My daughter was not a vegetarian but did have this to obtain the right nutrition.
As your daughter is deficient in a few things already perhaps her diet needs looking at. A dietician referral or a nutritionist may help.
Or it could be an absorbtion problem. If shes always been well on the present diet up to 5 years ago. She could take 400mcg of folic acid as its recommended at her age.
'Bakers knees' you remind me was something that was found once.
Have you considered thyroid issues ? In particular Hashimotos - which can affect absorption of nutrients resulting in low B12 - Folate - Ferritin - VitD.
Symptoms of low thyroid and low B12 can be similar. Also Thyroid testing in the NHS is rarely adequate.
I have Hashimotos and a B12 issue due to surgery.
I will check if she had a thyroid test, albeit you say it is not adequate? Definitely appears to be an absorption issue. Thank you
The NHS often test the TSH - Thyroid Stimulating Hormone - a Pituitary hormone that signals the thyroid to produce T4 and T3. So they too should be tested to understand how well the thyroid is working. So TSH - FT4 - FT3 and Thyroid anti-bodies TPO & Tg need testing to rule out Hashimotos. The link below has information about private testing , kits sent to your home.
personally I would not try to outwit the GP - it rarely works and normally makes them defensive. Practically you need more knowledge of test results. However the NHS thyroid test is inadequate and you'll need a private one (t4 t3 plus antibodies as well as tsh). At the same time you get active B12 measured - again NHS don't do this so must be private. That will give you a good clue about actual b12 status - but must not supplement for few weeks prior. Go to the GP foyou don't want to r their full bloods panel which will tell you a few things - vit d ferritin folate etc. The other problem is that your daughter may not want to any of the private stuff as you suggest so you may have to back off - as heart breaking as it is - when people are set on one course you don't want to create rifts - sometimes peeps just have to find out for themselves....Good luck though..
Definitely need to change GP - the b12 reading is meaningless, particularly if your daughter was taking supplements at the time. The nhs test cant say whether the b12 is active or not.
It might help your daughter if she understands that b12 is a vitamin and not so much a medicibe - if she will happily take it as an over the counter supllement orally, why not as an injection.
I found the gastroenterologist i saw to be pretty useless although he did get a lot of tests done which certainly ruled things out.
Join the Pernicious Anaemia Society and ring their helpline? Believe they can help with GP's sometimes and can certainly offer some knowledgeable advice. In similar position with my daughter, except she is self injecting - she's at uni and an adult so I can't have any input with GP but she's now self injecting and much better for it.
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