What to do next?

[mapalm78]

Sorry for the long post but I feel so desperate I don’t know what to do next. I feel like I’m a nuisance to the medical profession but I cannot go on living like this. I’m a 37year old mother of 4 children who feels like the life is draining away from me. Previous to 2014 I was active, energetic person. But now my health is at an all time low. My symptoms are; Tired even if I’ve slept, weak,trembling and dizziness when active, sharp pains in hands and wrists, aching hands, numbness in left hand at times, knee pain, back pain, burning sensation in feet at times, prickly sensations hands and feet, aching heavy legs, cramps, restless legs, headaches, confusion, forgetfulness, I feel like I’m losing my intelligence, blurry vision at times constant buzzing in ears, breathlessness, feel like I need to take deep breaths often, frequent mouth ulcers, constipation. Grandmother has PA, Aunt has Lupus. Not sure is this is relevant. Any advice would be greatly appreciated. I have read lots on this forum but I’m getting more and more confused as to what I should do next. Self treat? Demand more help from Dr’s? Although I find it hard to be assestive.

December 2014

Serum vitamin B12 level 446 ng/L [180.0 - 910.0]

Serum folate level 3.2 ug/L

January 2015

Serum vitamin B12 level 329 ng/L [180.0 - 910.0]

Serum folate level 4.6 ug/L

12th July 2016

Liver function tests

Serum total protein level 77 g/L [63.0 - 80.0]

Serum albumin level 49 g/L [35.0 - 52.0]

Serum total bilirubin level 9 umol/L [3.0 - 19.0]

Serum alkaline phosphatase level 62 iu/L [30.0 - 130.0]

Plasma alanine aminotransferase level 15 iu/L [< 42.0]

Full blood count

Haemoglobin concentration 147 g/L [120.0 - 160.0]

Please note: HB units of measurement have now changed to g/L.

Total white blood count 8.4 10*9/L [4.5 - 11.0]

Haematocrit 0.465 [0.36 - 0.46]

Above high reference limit

RBC 5.01 10*12/L [3.8 - 5.8]

Mean cell volume 92.9 fL [80.0 - 100.0]

Platelet count - observation 283 10*9/L [150.0 - 450.0]

Neutrophil count 5.5 10*9/L [1.8 - 7.7]

Lymphocyte count 2.2 10*9/L [1.0 - 4.8]

Monocyte count - observation 0.5 10*9/L [0.2 - 0.8]

Eosinophil count - observation 0.2 10*9/L [< 0.6]

Plasma glucose level 4.6 mmol/L [3.0 - 7.8]

Blood haematinic levels

Serum vitamin B12 level 316 ng/L [180.0 - 910.0]

Please note change to reference range due to change in methodology.

Serum folate level 4.8 ug/L

Intermediate level. Please interpret with reference to clinical state

and other indices.

Urea and electrolytes

Serum sodium level 138 mmol/L [132.0 - 145.0]

Serum potassium level 4.6 mmol/L [3.5 - 5.0]

Serum urea level 4.9 mmol/L [3.0 - 6.5]

Serum creatinine level 69 umol/L [50.0 - 120.0]

GFR calculated abbreviated MDRD 83 mL/min/1.73m*2

Thyroid function test

Serum free T4 level 11.8 pmol/L [9.0 - 24.0]

Serum TSH level 2.02 mu/L [0.2 - 4.5]

Private Blue Horizons test

Active B12 45 pmol/L 25.1 - 165.0

Vitamin B12 L 210 pmol/L Deficient <140 pmol/L Insufficient 140 – 250

Consider reducing dose >725

New GP isn’t interested in these results and is testing for other things. I’ve some results already. I did show him the guidelines.

4th August

Serum iron level 11.7 umol/l [10 - 28]

Percentage iron saturation 23 % [15 - 40]

Unsaturated iron binding capacity 40 umol/L [28 - 64]

Immunoglobulin A level 2.45 g/L [0.8 - 2.8]

Serum ferritin level 51 ng/ml [15 - 200]

Serum albumin level 42 g/L [35 - 52]

Serum calcium level 2.43 mmol/L [2.15 - 2.6]

Lyme IgG Antibody Report, Normal

Pending results

Conn Tiss Autoimmune (ANA)

Thyroid Antibody

Coeliac Screen Tiss. Transglutaminase Ab

Thanks in Advance

Maria x

[Hillwoman]

Maria, have you asked for the fT3 test? GPs are reluctant to order it and NHS labs reluctant to do as they're told, so you may have to do it yourself via BH. You fT4 is really too low (should be in top quarter of range), your TSH is too high (should be 1 or below) and of course active B12 is too low. And you have a family history of AI disease. No wonder you feel so rough!

Others may be better qualified to comment on your other results, but I would post your thyroid results over on the TUK forum and ask for advice. As for B12, if you don't think you can get anywhere with the GP, you will probably have to self-treat to avoid further deterioration and improve your health.

[PAS-admin Partner]

Your B12 is going down and with your grandmother having PA I would aks for the anitbodies test (both) and maybe evn gastrin if possible. The B12 level now is low enough to be a deficiency. If you can get MMA and homocysteine tested, that would be also good.

Active B12 is ok, but that does not rule out a deficiency.

Re thyroid: if you are not a thyroid patient I believe they're ok. If you are then they're not.

So try to get the other tests done, and/or maybe get referred to a specialist (apologies, don't know how the system there works) because you have a lot of symptoms and they should be taken seriously. There's a chance it's PA an/or B12def so it's best to get the tests done before taking anything with B12.

[mapalm78]

Thanks for your replies. Do you know if the ft3 is part of the Thyroid Antibody test I've had done? I'm not a thyroid patient.

I think I need to be more assertive with with my GP, the trouble is I turn into a gibbering wreck as soon as I walk in the door to the surgery. It's hard to be strong when feeling ill.

I'll look into the MMA, I've noticed it's quite expensive but saving for it may be my only option.

Also should I be trying to get my iron, ferritin and folate levels higher?

[PAS-admin Partner in reply to mapalm78]

It's not easy to talk to most doctors, especially when you're already not feeling well. Just bring someone who can back you up (I bring a friend who I call my external hard drive ) and write down what you want to say as well. If you can't get the words out just hand the note. Write down what you want and why. And remember: it's called a consult..you are asking for a consult, advice. Go for the antibodies first, the doc will probably know them and MMA not. Maybe you get lucky and he'll trow in homocysteine. Yes, folate is a bit on the low side but better wait till you have B12 with that, it's not seriously low and folate can change quite quickly. Ferritin is ok for now I think. You can always look into that again later.

[mapalm78 in reply to PAS-admin]

Thankyou, I have got a friend who has offered to come with me. I'll wait for the rest of my results and then arrange another appointment and take my friend up on her offer.

[Withattitude in reply to mapalm78]

In your shoes I'd take my husband with me, or a really good assertive friend. Sorry you are having such a rough time.

[jillc39]

others will give you med advice - but I want to say how I see red when I read 'I feel I am a nuisance to the medical profession' Goodness, how many of us have been made to feel this by our gp when we are trying to negotiate about b12 symptoms.......

[mapalm78]

I always feel their reluctance to do any further testing and they offer anti-depressants. I don't feel depressed just fed up with feeling unwell. It's sad that patients feel this way.

[Sleepybunny]

"Grandmother has PA, Aunt has Lupus"

PA can run in families....see link below

pernicious-anaemia-society....

UK b12 websites

pernicious-anaemia-society....

Are you a member of the PAS(Pernicious Anaemia society)?

martynhooper.com/

b12deficiency.info/

b12d.org

Symptoms

A lot of the symptoms you describe can be found on lists of b12 deficiency/PA symptoms. See links to lists below. I ticked all my symptoms on PAS Symptoms list and gave a copy to my GPs.

pernicious-anaemia-society.... Click on Symptoms checklist

b12deficiency.info/signs-an...

B12 books

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper. This book is up to date with current UK B12 guidelines.

"Could It Be b12" by Sally Pacholok and JJ. Stuart

" I’m getting more and more confused as to what I should do next"

There might be useful info in these next links.

b12deficiency.info/what-to-...

b12deficiency.info/b12-writ...

Uk b12 documents

1) google "BCSH Cobalamin and Folate Guidelines" Page 29 is a diagnosis flowchart that shows then recommended process a GP/medic shoudl follow if they supect someone has B12 deficiency. Page 8 of teh docuemnt gives info on recommended Uk B12 treatment.

2)bmj.com/content/349/bmj.g5226

See 5th summary point in above link.

patient.info/doctor/pernici...

[Sleepybunny in reply to Sleepybunny]

I am not a medic just a person who has struggled to get a diagnosis.

Good luck with getting the tests and treatment you need.

[mapalm78 in reply to Sleepybunny]

Thanks for your help

[Gambit62 Administrator]

Your GP may be dismissing B12 as a problem as the results don't seem to show any obvious signs of anaemia (or macrocytosis). However, anaemia isn't always amongst the first symptoms to appear. My GP looked at my bloods and saw that I didn't have significant macrocytosis so was pleased to tell me that the condition had been caught early - I can actually trace symptoms back over 40 years so it's an unfortunately common misconception.

Going for MMA would be good as a way of indicating what is actually going on at the cell level though as PAS-admin says the fact that your grandmother has PA and your levels are consistently dropping would point to an absorption problem.

Your folate levels are consistently on the low side and as folate is needed in order to fully process B12 it may not be helping - though without it being low its likely that your B12 levels would be falling faster.

The pressure to take anti-depressants is irritating.

Could you try seeing a different GP?

[Gambit62 Administrator in reply to Gambit62]

sorry - also meant to say that its good to look for other things as well - unfortunately it is possible for more than one thing to be going on but would be good to get the B12 recognised as part of the problem

[mapalm78 in reply to Gambit62]

Thanks, this is my second GP. He's been more helpful than my previous GP but has said we would have to 'go down the psychological route' if these tests don't show anything. So I may change again or be more assertive in getting the test I would like to have done. I have noticed my folate levels have been raising slightly as m B12 drops.

[Gambit62 Administrator in reply to mapalm78]

perhaps you should remind your GP that B12 deficiency can also cause neuro-psychiatric problems - these were the first symptoms I had - followed by some neurological problems - tingling in hands initially put down to poor circulation then later to carpel tunnel and tarsal tunnel ...

[CarpaBob]

Consider writing to your gp this way you can be sure you get everything across to him, this is what I had to do and had to ask for a referral to a haematologist as per NICE guidelines for neurological symptoms, and include a list of your symptoms. A couple of my posts have some excellent links provided by other members which helped me write my letter and tackle my gp.

[123harry]

hi l was a bit similar to yourself and suffered for 15 years since the birth of my second son, try to insist on tests for b12 l didn't get anywhere however with a b12 of 140 so its unlikely you will don't be disheartened by this, l have been and still am but l am getting better at coping with the ignorance of my gps l self medicate with jarrows 5000 lozenges and use a spray but don't start until you see whether they will do the b12 tests l don't see a test for vit d l was deficient and the tablets worked amazingly, l was diagnosed post natal depression 15 years ago there was no internet for us then, it was very much a luxury! and very few mobile phones so no info on medical things,l was offered no blood tests just anti-depressants, gps are so misunderstood about these vital minerals and vitamins, l sympathise with you don't give up though, my thyroid results are very similar to yours also and lm looking into this myself let me know how you get on with these also did you have any sudden severe blood loss with any of your births?

[Sleepybunny in reply to 123harry]

After seeing 123harry's comment about births, I wondered if you had used "gas and air" pain relief in any labours? Nitrous oxide is part of "gas and air".

See link about affects of nitrous oxide on blood

gov.uk/drug-safety-update/n...

martynhooper.com/2015/08/22...

Coeliac Disease

I also wondered if you had ever been checked for Coeliac disease. Coeliac disease can affect the gut therefore it can lead to nutritional deficiencies including b12 deficiency. It is possible to have Coeliac disease even if the Coelaic antibody test comes back negative. see next link.

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