Pernicious Anaemia Society

Struggling With GP's..One Step Forward...Hundred Back

Hi. I have posted a few times now. First time was with Blood Results about 8 months ago..A lot seems to have happened since then, so i apologise in advance for a long post. As you may see from 1st post, in 2003 it was found i had large red blood cells. But, i only found this out earlier this year, when the Dr i now see, decided to inadvertantly tell me!! She later tried telling me, and still insists that a couple of her Endo friends said this is nothing to worry about, some people have this problem!!..The middle of September after me constantly going back and forth and them having more of my blood than me!!..Dr agreed to give me " a trial " loading dose of B12...Believe me i could have kissed her feet, the relief i felt was overwhelming. I had 6 injections over 2 week period, the difference in me was almost instant, which was quite startling because by now after being ill for about 15yrs, i thought it was irriversable the damage that has been caused to my body..My head felt as though a veil had been removed, i could speak without slurring/stumbling my words, i could hold a conversation, my memory became more lucid, pins & needles in hands, legs and feet so much better, libdo returned ( to hubbys delight ) .... The Nurse was surprised it had taken the Dr so long to permit injections. She said i would have follow up injections every 3 months. Sadly i feel i needed the injections to possibly be monthly after the loading dose, because within 3-4 weeks i can feel symptoms returning...I have just had more bloods done for Dr to see any changes...Hence brings me back to today...I saw her this morning, she asked how i felt...I told her i want the B12 to continue, she agreed. She said my bloods have come back normal, surprise, surprise!!

I explained that a few weeks previous i saw another Dr ( my usual one not available ) My ankles have been swollen for a very long time, plus my stomach is extremely swollen and painful, i feel my organs are struggling, and my knees joints are so swollen, i am in agony, my muscles in the tops of my arms and calf and thighs are so weak...This other Dr was horrendous..appparently she had seen worse ankles on other people, never even looked at my knees, and said she would not let me have the B12...I told her " thank god for Dr Jack then "

My Dr today has arranged for me to have X- rays on my knees, feels it is Arthritis..No it is not, after examining my stomach agreed that i should have more bloods done for Thyroid, she said not done since 2011,,hello!! I was supposedly tested months ago!!..But said i could not have T3 because they do not test for this on NHS..Do they not??.. Plus if i need medication for it, again not covered by NHS..Is it not?? She said i can get it privately, until she hears from me as to what i decide to do, she will hold back on other Thyroid bloods etc..

I have put the results of my bloods below that i got today... I dont think they tell me a lot...Once again sorry about long essay..But i know i trust you all with advice, without you all i would not got as far as i have....

Full Blood Count ( 424 )

Haemoglobin concentrate (Xa96v).............139 g/L [ 115.0 - 150.0 ]

Total white blood count (XaldY)..................5.1 10*9/L [ 4.0 - 11.0 ]

Platelet count - observation ( 42P )..........259 10*9/L [ 150.0 - 400.0 ]

Red blood cell count ( 426 )........................4.25 10*12/L [ 3.8 - 4.8 ]

Haematocrit ( X76tb )...................................0.435 [ 0.37 -0.47 ]

Mean cell volume ( 42A ).....Above Range...102.0 fL [ 78.0 - 99.0 ] Above high reference limit

Mean cell haemoglobin level ( XE2pb )....Above Range.....32.6 pg [ 27.0 - 32.0 ]...Above high reference limit

Mean cell haemoglobin concentration ( 429 )........319 g/L [ 310.0 - 360.0 ]

Neutrophil count ( 42J )................................................2.0 10*9/L [ 2.0 - 7.5 ]

Lymphocyte count ( 42M ).........................................2.3 10*9/L [ 1.5 - 3.5 ]

Monocyte count - observation ( 42N ).....................0.5 10*9/L [ 0.2 - 1.4 ]

Eosinophil count - observation ( 42K ).....................0.3 10*9/L [ 0.0 - 0.4 ]

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

Nucleated red blood cell count ( 4266 )................0.00 10*9/L [ 0.0 - 0.0 ]

Serum folate level ( 42U5 )........................................12.2 ug/L [ 2.1 - 26.8 ]..Please note revised lower limit with effect from 24/3/17

7 Replies
oldestnewest

were these before your loading shots? or if not how long after? You have macrocytosis but your folate isn't deficient which rather suggests B12 deficiency.

The usual diagnositic test for thyroid is TSH - if that comes back normal then it would be TSH along with T4 (and possibly T3, and thyroid antibodies).

The issue is more around treatment - some people have problems converting T4 to T3 so can benefit from having T3 but I think it has been removed now from the normal list of available medications and treatments in the UK.

Suggest you post thyroid results on TUK when available

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Thankyou Gambit. These results were done Friday. 5 weeks after loading dose. Dr did TSH, she said this is normal. Would you advise me to get TSH done again along side T4 and T3 and Thyroid antibodies? I will get them done privately.

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Anybody have any idea how much it may cost getting private blood test? Will make a call tomorrow, just eager to know roughly

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suggest that you post on TUK forum.

There is also reference to private testing discounts on this page of the TUK website

thyroiduk.org/tuk/diagnosis...

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Thankyou

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Swollen ankles? Me too in fact thats the first thing that I noticed a large swelling on the right ankle, nobody knew what it was and recently the left ankle swelled up too. My hands are constantly swollen...... I have had B12 loading shots and now on the three monthly pattern. Are the swellings related to B12 deficiency and if so why? Thank you for sharing.

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Valmacdon. Whether coincidental, but my right ankle swelled first, then left one. On the outer side! Really don't know if this is connected to B12. As I stated above, I have had loading B12, awaiting my 3 monthly in December. My ankles, knees and stomach still swollen/bloated. Just sent of for a private blood test on Thyroid

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