Blood results : I have noticed that quite a lot of... - LUPUS UK

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Blood results

lizzy1976 profile image
13 Replies

I have noticed that quite a lot of people on here are posting about blood results, things being positive etc. My consultant has never told me or discussed my bloods in detail, not that I’m surprised because he is as much use as an ashtray on a motorbike

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lizzy1976 profile image
lizzy1976
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13 Replies
tmjourney profile image
tmjourney

this made me LOL. I’m sorry lizzy 😔

Lisalou19 profile image
Lisalou19

🤣🤣🤣🤣🤣🤣this really made me laugh.

😂😂😂😂😂x

Lisalou19 profile image
Lisalou19 in reply to Lisalou19

They should discuss them with you, or ask for a print out.

Whilst there are no medical experts on here, some users are quite knowledgeable with some results x

I think we agree and you made us all smile 😊 and 😂

lizzy1976 profile image
lizzy1976

Had an appointment with my consultant yesterday and came away with no treatment at all, no help and dismissed everything I said..... which is normal so feeling sorry for myself lol however I’m going to put my big girl pants on and do something about it this time 👍

in reply to lizzy1976

I think we must have the same consultant 😂 I just get a letter in the post weeks after telling me it’s all the same and to reconsider hydroX which I don’t tolerate. 😡

This time I’ve made the decision to reply to his letter with a copy to my GP including a list all my “ailments”, new and old that are worsening and remain untreated even those I had no time to mention in our 10 minute visit last time. I’ll try to be polite and remark that none of my issues have been addressed in any way and I will thank them for sending me the same letter every 9-12 months that doesn’t clarify neither solve anything leaving me feeling helpless 😢

AgedCrone profile image
AgedCrone in reply to lizzy1976

Ask for a referral to another consultant....that is quite normal...speak to your GP he/she will arrange it.

Peppytea profile image
Peppytea in reply to lizzy1976

Oh you poor thing, I’m sorry Lizzy 😞

My consultant is exactly the same as yours. I had a list as long as my arm of new symptoms I had acquired in the past 6 months and he had an answer for everything (a patronising one, I must clarify). He didn’t listen to anything I said and actually interrupted me a few times, misjudged what I was actually going to say, went on a rant about what he thought I was going to say and then I had to embarrassingly correct him. Awful.

I stood for it this time because I was so shocked. My Mum goes to the same clinic and her consultant is fabulous. But the next time I go I will be standing up for my rights and telling him, as a doctor, her should be making me feel comforted and all you’re making me feel is a fraud, which I know I’m not!

You must try to stand up for yourself. Even if it’s going to your GP and asking for a second opinion from another consultant - you’re well within your rights!

Good luck with everything dear, please let us know how you get on 😞🌟

lizzy1976 profile image
lizzy1976

I don’t even get a letter buttercup! Yes I have an appointment with one of the gp’s next Thursday so that’s what I am going to do, I have the name of a consultant someone recommended on here so I’m going to ask to see him, I don’t think someone with *quote* (mild lupus)should be left with no treatment at all and told if the methotrexate didn’t work nothing else will

Lisalou19 profile image
Lisalou19 in reply to lizzy1976

So frustrating. When you go to your gp say you want a second opinion referral, which your entitled to under the nhs. X

in reply to lizzy1976

Yes, as @Lisalou19 says it is very frustrating! I’ll try to do the same. I hope we are heard this time @Lizzy1976. Let us know how it goes 🤗

lizzy1976 profile image
lizzy1976 in reply to

Yes I definitely will let you all know

fabwheelie profile image
fabwheelie

Regarding being given the results of blood tests as a patient, in my experience it's not common practice by any drs to give patients their results, or they only "briefly mention" something ( eg your ANA was 1:640)

I personally would prefer this "mystery" of only drs can see the number values / have copy of results to be changed and patients informed more. However see my comments below as it's not always "helpfull " for patients to be given all blood results

Quite honestly I think some of "the mystery", comes because some drs themselves only really see the number you get, and the normal range / any "flags" the lab report puts on the results from your tests, and I suspect many drs don't know any more about blood tests than that, so are reluctant to discuss as "they don't know enough to explain".

However I would also say it's not always "helpful " for patients to be given blood test results as interpretation of blood test results isn't always straight forward; there'd need to be a lot more appointment time to "try explain what the results mean"; a lot of the tests are given as an "abbreviated" set of initials ( eg FBC, ESR, CRP, ANA many of you may have heard of) ; some things are more "relevant" than others (eg platelet count might be important but mean platelet volume not looked at in general not even by a haematology consultant); and reference ranges do often vary based on if male, female, your age, even sometines vary from lab to lab (out of interest/ info for some of you that's one reason INR was introduced for those of you're on warfarin familiar with that test, INR is to give an "International Normalised Ratio" that adapts lab range , the reagents used in test so every lab wherever you were would give same INR as a "blood clotting measure" / consistency of care from different labs/ regardless which laboratory did your test, stop that test having difference in reference range from one lab to another ); All above are examples where there's also an element that if you informed patients of their results / the "numerical values" they could possibly not interpret them correctly, be asking drs questions they can't really answer, or it "needlessly worry the patient / not actually be that important or significant to their care"

By the way I am an expert in haematology blood tests, as pre having to take ill health retirement I was a senior Biomedical Scientist in the main haematology lab in NHS hospital, so I have knowledge, and extensive education in that field. Drs are even reluctant to tell me my results including my basic heamatology ones of FBC and ESR values, they usually just say "normal" even if I directly ask "what were my blood tests I used to work in haematology". ... Yes for years I was the one in a lab coat doing those tests, interpretation of did further tests be warranted based on FBC values etc etc.. However unfortunately due to "brain fog" even I sometimes have to go to reputable online sources to remind myself of the information, reference ranges, relevance etc. (I can see why basic GP etc not happy to have to be doing this just because patients wanted more info on their blood tests) I've always thought if I was ever well enough to work again I could make a good business out of "come to me I'll try explain your lab blood test results", writing articles for the "lay person" regards what do blood tests mean, although I guess even I'd need training on the biochemistry and some of the immunology side of things, to do it justice

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