Hope someone can help...... - Pernicious Anaemi...

Pernicious Anaemia Society

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Hope someone can help......

Lilnicki profile image
10 Replies

have had many problems since birth including constipation, poor concentration, bad short term memory, easily fatigued. One of my earliest memories is being sat on my mothers knee aged around 3 or 4 at the doctors surgery . She told him these problems..... He looked in my mouth and in my ears and proclaimed he could not see anything wrong...... That was the start of many, many years of not being taken seriously by doctors.

I'm in the medical profession myself ( lab technician ) so I'm familiar with common disorders, and I have often thought I show signs of an under active thyroid. Over the years I have been backwards and forwards with the above issues ( and some others ) and have asked for thyroid tests. They do a TSH, and when that's in the normal range they send you away. I'm sure you're aware that TSH is only one of many indicators to diagnose thyroid issues, but when I asked for other tests they offered me Prozac and counselling :/

Recently I had a phone call to say my Nan has just been diagnosed with PA, although I had heard of it, I did not know the symptoms. Now I see there is a big overlap with thyroid ones. My Mum also has similar set of symptoms, and is going to ask her GP for B12 testing. Here is my dilemma then...... I would like to be tested for PA, but am reluctant to see my GP, so I have have booked with the nurse for next week. Trouble is I have a history of becoming tearful when trying to discuss this with the medical profession, because there have been so many times when I have not been taken seriously, and of course this is upsetting. ( also I have Aspergers which makes me overly anxious ). I can maybe see a situation too where my levels come back normal, and I'll be sent away again. So I guess I want to find out : if I need to, can I get a FULL SET OF LEVELS done privately for thyroid and PA ?

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Lilnicki
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Lilnicki profile image
Lilnicki

Oh...... And I did the checklist on here and scored 49 .

Poppet11 profile image
Poppet11

Somebody else will have to answer you regarding the private labs - I haven't got a clue how things stand with regards to that. Although be aware that with many lab tests, your doctor has to refer you even if you go private.

Take someone with you who you can trust if you need to see your nurse. And by trust I mean someone who is supportive of you.

It may sound a little patronising, but because of the effects of the lack of b12, many of us, even people who were previously very confident, are not when we are ill. I'm sometimes still like it on the phone - and I know a lot of other people are too.

It may actually be worth your while, if you are thinking of the private labs, to get your homocysteine and urinary MMA checked as well.

The serum b12 test is considered by some, and not by others, to be an acute phase reactant ie if the patient is stressed the level rises. Other tests may give you a more accurate result?

Lilnicki profile image
Lilnicki in reply toPoppet11

Thank you for taking the time to reply..... My appointment is now tomorrow, so I'll let you know how it goes :)

Poppet11 profile image
Poppet11

If you can take someone trust worthy and supportive with you, do it. Without going into the scientific in's and out's, I firmly believe that people with this illness function better if we are in the company of someone we have confidence in.

I know, it sounds crazy - but I have got a solid reason for saying it.

Hi Lilnicki ,

I think it would be good to have a full thyroid panel done and the active B12 test, which is currently a better test than the serum B12 test. If you go privaqtely to a haematologist you may find they can do those tests for you.

In this topic are links to private labs, see:

pernicious-anaemia-society....

I know this one does full thyroid panel and they do have private GPs that could help you get the active B12 test should you wish to try that, see:

gdx.net/uk/

For Info about the active B12 test (which costs only £18,-, but needs a GP's letter to request) see here:

active-b12.com/home

viapath.co.uk/our-tests/act...

I hope your appointment today will go well,

Kind regards,

Marre.

Ozzie1234 profile image
Ozzie1234

Hope you get it all sorted,

Marz profile image
Marz

if you are able to do tests privately then go to the main Thyroid UK website where you will see all the information on testing with Genova and Blue Horizon. These labs are used by the Docs so they will look at the results :-) Doing it through Thyroid UK enables you to receive a discount.

B12 and Thyroid do overlap and not sure which causes which - chicken or egg !

Hope you soon feel better...

Lilnicki profile image
Lilnicki

Thank you everyone...... She really seemed to listen which was nice !

She has arranged for the following blood tests :

TFT's including T4

B12

Folate

Intrinsic Factor

I specifically asked for a full thyroid panel, do you think that will be covered ? Also I had been taking a Vitabiotics supplement until a few days ago ( contains 10 ug B12 ) will that skew the result ?

in reply toLilnicki

Hi Lilnicki ,

T3, including thyroid antibodies apparently would be good, but I know to little about thyroid issues, to say much, and what you are having done is a start. Yes taking any supplements may skewer results, but it will not skewer IF (Intrinsic Factor) antibody results, if that is what is being tested. Its all a start, and good you feel you were listened to! If you test negative for IF (Intrinsic Factor) antibody, it still will not rule out PA, as that test is notoriously unreliable. See:

bcshguidelines.com/document...

I hope this helps,

Kind regards,

Marre.

Coastwalker profile image
Coastwalker

Hi Lilnicki, When you go to find out your results, ask your Doctor for a printout of the results and their ranges and post up on Thyroid UK here on Healthunlocked, being 'within range' doesn't always mean you have not got a Thyroid/B12 problem. Both Hubby and I were showing 'within range' on our B12 bloods, but we were both a very low 'within range.'

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