Some advice please: Hi all, I wonder... - Pernicious Anaemi...

Pernicious Anaemia Society
21,603 members15,111 posts

Some advice please


Hi all,

I wonder if I could please ask for some advice regarding my worsening symptoms and help interpreting blood test results? I've been having symptoms for years which have always been dismissed as anxiety or panic attacks but as I've had many many episodes of fainting I'm trying to find some answers. Here are the symptoms that I've been experiencing:

For most of my life I have had the following issues and in recent months these have become progressively worse:

- Dizziness and fainting

- Heart palpitations

- Recurring headaches

- Anxiety

- Extreme fatigue (I have to sleep for at least an hour during the working day and wake up tired after 8 hours of sleep).

- Pale complexion

- Ringing in my ears

- Pins and needles in my feet and hands

- Memory issues and difficulty concentrating & articulating myself

- Goitre

- An ache between my shoulder blades that just won't go

Over the years I’ve been referred all around the NHS and have noted over that time, that at the mention of anxiety has always been a roadblock. I’ve been referred for CBT and tried a course of citalopram against my better judgement. I’ve also paid for numerous therapy sessions privately. I’ve had ECGs, CT scans and full blood count tests and nothing has ever been resolved. I strongly believe that my anxiety has always been a symptom of something underlying and not the cause. I am not a person who has many worries, I have a supportive and loving partner, a job that I adore and most of the things that I could ever wish for.

On Monday night an ambulance had to come and get me from the dual carriageway as I almost lost consciousness. I was able to pull the car over as my hearing started to muffle and I started to black out. This was easily the worst episode I’ve ever had given that I could have had a very bad accident. In hospital I passed out in the hallway and hurt my hip in the fall. My blood and ECG both came back normal but at the time I was passed out my blood pressure was low (they tested me whilst on the floor). I can’t count the number of times this has happened to me even from when I was very young. Not only am I worried about the frequency of my dizziness and passing out but I’m worried about where this could happen.

My GP saw me the next day and took another blood test and ECG both came back as normal with 'no further action required'. This is all well and good but I have been completely wiped out and still have the same symptoms. The results of the blood tests are as follows:

Full Blood Count (424)

Total white blood count (XaldY): 5.2 10*9/L [4.0 - 10.0]

Red blood cell count (426..): 4.00 10*12/L [3.8 - 5.5]

Haemoglobin concentration (Xa96v) 129 g/L [120.0 - 150.0]

Haematocrit (X76tb): 0.383 [0.37 - 0.47]

Mean cell volume (42A..): 96 fL [80.0 - 100.0]

Red blood cell distribution width (XE2mO): 13.1% [0.0 - 16.0]

Mean cell haemoglobin level (XE2pb): 32.2pg [27.0 - 32.0] ABOVE RANGE

Mean cell haemoglobin concentration (429..): 338 g/L [280.0 - 350.0]

Platelet count - observation (42P..): 113 10*9/L [150.0 - 400.0] BELOW RANGE

Differential white blood cell count (42l..)

Neutrophil count (42J): 3.1 10*9/L [1.8 - 7.5]

Lymphocyte count (42M): 1.6 10*9/L [1.0 - 4.0]

Monocyte count - observation (42N): 0.4 10*9/L [0.2 - 1.0]

Eosinophil count - observation (42K): 0.1 10*9/L [0.0 - 0.4]

Basophil count (42L): 0.0 10*9/L [0.0 - 0.1]

Urea and electrolytes (X77Wi)

Serum sodium level (XE2q0) 142mmo/L [133.0-146.0]

Serum potassium level (XE2pz) 3.9mmo/L [3.5-5.3]

Serum creatinine level (XE2q5) 60 umol/L [64.0-110]

Serum urea level (XM0lt) 3.8mmo/L [2.5-7.8]

GFR calculated abbreviated MDRD (XaK8y) >90 mL/[60.0-200.0]

Plasma glucose level level (XM0ly) 5.7mmo/L (3.0-7.8)

Liver function tests (X77WP)

Serum alumine aminotransferase level (XaLJx): 14 IU/L [10.0 - 36.0]

Serum alkaline phosphatase level (XE2px): 52 IU/L [30.0 - 130.0]

Serum total bilirubin level (XaERu): 12 umol/L [0.0 - 21.0]

Serum albumin level (XE2eA): 48 g/L [35.0 - 50.0]

AST serum level (X771i): 16 IU/L [0.0 - 31.0]

Serum total protein level (XE2e9): 68 g/L [60 - 80.0]

TSH: 2.25 mU/L no range given


Serum vitamin B12 level (XE2pf): 337.4 ng/L [180.0 - 2000.00]

Serum folate level (42U5): 9.86 ug/L [4.6 - 18.7]

Serum ferritin level (XE24r): 85 ug/L [130.0 - 150.0]

I apologise for the incredibly long post but I'm worried about what to do next, I've had no follow up appointment and previous experience tells me I won't be offered further help unless I research things myself.

Any advice or information would be very gratefully received.

Many thanks in advance!

11 Replies

Hi, from your symptoms it sounds more than likely a B12 deficiency, despite your level being within range. As many many posters on here will tell you unfortunately gps etc treat by numbers and not symptoms. You are in an unfortunate position of if you decide to self treat it will alter any future tests carried out and if you go to gp now he will more than likely ignore your need because it is 'within range'.

How well do you get on with your gp? Perhaps you could persuade him to at least give you a couple of loading doses to see if there is any improvement.

A call to Martin at PAS might not go amiss as he could perhaps advise you how to proceed.

in reply to Lisahelen

Thank you very much for your reply. After a pleading email to the surgery I am seeing a new GP (I moved a year ago so have only been twice) next Thursday for a double appointment. I mentioned in the email trialing some B12 injections.

I really hope that he's open to that suggestion or I don't know what to do next. I find it hard to fight my case in person (mostly because I'm so run down & exhausted and it leaves me finding it hard to articulate myself or think quickly) hence writing to them.

How can I speak to Martin at PAS please? Excuse my ignorance but I've just joined these forums today.

Thanks again for taking the time to read my query!

in reply to hantastic

Go to the PAS website. There is a contact phone number as far as i know more often than not it is Martin who will either take the call or call you back if you have to leave a message. But do leave a message, as far as im aware no call is not replied to. On occasion he has helped people directly with their gp.

Can you not take an informed friend with you.

Take a list of your symptoms and how long you have suffered with each one as far as you can remember. Dont let gp rush you out of the surgery, you have had the foresight to book a double appt.

hope all goes well for you, keep posting, there's more often than not someone who can answer your queries.

in reply to Lisahelen

Thank you so much for being so helpful. Unfortunately I don't have any informed friends ;) not in this anyway. I will call that number though ahead of my appointment and will go prepared with detailed lists and a diary of recent events too.

Again, I really can't thank you enough. I feel less alone in this now and feel more confident about getting to the bottom of this.

At the top of page where it says pas the blurb says read more in blue -- click there, the phone number is listed for you.

It is good they tested your thyroid - however the TSH is only part of the story. You need to know how much T4 the thyroid is producing - it is a storage hormone only. It then has to convert into the ACTIVE thyroid hormone T3. A hormone that has a receptor in every cell of the body - so very important. So the tests required are the TSH - FT4 - FT3. It may be helpful to also have thyroid anti-bodies too - Anti-TPO and Anti-Tg. I have auto-immune thyroid issues - so have learnt along the way !

I couldn't se tests for PA - testing of the anti-bodies - Anti-IF and Anti - PC. Anti-Intrinsic Factor and Anti-Parietal Cells.

It really is so sad that Doctors have so little knowledge about B12 deficiency. The B12 that is circulating in the blood is greatly reduced when it becomes activated for use in the cells where it is needed. Only 20% of your result is available for the cells.

Do hope you soon feel better.....

in reply to Marz

Thank you, I will write down a timeline of my symptoms and things that previous doctors have referred me for. This will hopefully avoid going round in too many circles. I'll also request the further thyroid and b12 tests to try and get to the bottom of this. I'm not living at the moment but just existing. Things shouldn't feel as much of a struggle as they do. I'm only 33 but have been this way for many many years. I'll update this post once I've seen my GP again. Hopefully with some positive news!

in reply to hantastic

You could write your Timeline on your Profile - it saves having to keep telling people your journey. If you click onto my name you will wee what I mean :-)

It can be a long journey which hopefully people here and on Thyroid UK will help you with.....

Wishing you well...

Hi Hantastic,

sorry you've had such an awful time! Aswell as this site I also found the link below very helpful when going to see my GP. I also have a 'within normal' range reading but am highly symptomatic.

Thank you so much for sharing these resources. Having people who have been through the same as me is frustrating but of some comfort. You'd think with it being so common that they would have more education on it.

I wonder how many people have been palmed of with the "you're anxious and depressed, try some SSRIs" rubbish that I've heard for so many years.

Just a little update and rant. Over the weekend my symptoms have got worse. My hands and feet have been cold and sweaty, I've had a constant headache and ringing in my ears and I've been barely able to get out of bed feeling like I'll pass out. I called my GP surgery this morning and asked for a doctor to call back. After an hour or so a locum GP called and I explained that my symptoms have been getting worse. He didn't even let me explain the worsening symptoms and said that there are a few bugs going around. He said I should just wait and come in for my appointment that I already have booked for the end of the week. I mentioned my blood tests last week and he said they were normal so that's comforting.

I was so annoyed to say the least and said that it's not really of much comfort when I still have the symptoms and they are getting worse over time. I've been left feeling as though I'm on my own to deal with it all. I work and as I'm self employed don't get any sick pay or anything. I'm not after a sick note or any benefits other than the care that I believe I have a right to. I've read similar stories on here so don't think this is isolated at all. How on earth am I ever expected to get to the bottom of this without a fight?!?

You may also like...