Blood Test Results - What else do I need?

So I asked for a copy of all my results and I got a pile of papers, I didn't know what to type up so I spent the day scanning the lot.

Only cos I asked for them I've got tests for Vitamin D, Folic acid & Iron next Monday but seen as I think what's occurred is coeliac->thyroid->B12->SACD I'm wondering what else to ask for, if they'll do them.

I uploaded the image to my newest cheap domain buy (I have an addiction there too lol), depending on your browser you should be able to click to expand it to 100% which is readable. Sorry I couldn't figure out an easier way, my brain's not up to typing it all in right now, although I did try, made my head hurt so I spent the day scanning and stitching instead:

Any help most appreciated!

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64 Replies

  • Even at 500% magnification I cannot read the printout - sorry

  • I've removed the uploaded one, just click the link in the post. I thought that might cause issues - this forum messes around with the image you upload!

  • Dear Steve I managed to read by going to view and zooming in. It did take a bit of zooming though. Can you remember at what time of day you had your blood taken for this? I could not see you T4 result which is the test for your store of thyroid hormones and you would be lucky to get your T3 done which is the measure of active thyroid hormones. Your TSH which is thyroid stimulation hormone which is a pituaritary hormone that stimulates your thyroid to produce more thyroid hormones is just within the american accepted range. In America anything above three is recommended level to start treatment. The engineer who developed the tsh test is saying and has been giving evidence to scottish parliment on this. that the TSH test is interpreted to ridgedly and is over relied on as a diagnostic tool. I think he has said that basel temperature and pulse are far better indicators of thyroid desease. A tsh of 2 has me bedbound and I have met many similar. The patron saint of thyroid patients Saint Gorden Skinner had a theory that I only read recently that hypothyroidism can affect the pituaritary function making the pituaritary unable to function and produce the nessasary TSH. This makes sense to me of all the years I have had pituaritary symptoms that come and go. But this would lead as it has in my case to non diagnoses that relies on a tsh test. To sum up Steve. It would have been much better if your T4 was taken. Your TSH within range but that means piss all. However your collesterol is good and raised collesteral is indicator of thyroid issues (used to be the test for hypothyroidism before TSH). If you have the energy it might be a good idea to take your temp every morning for a week before getting out of bed to see if low and take you pulse as well to see of lower than you would expect. When you next see the doctor and ask for the blood try to persude him to repeat TSh and take T4 as well and make sure you ask for ferritin levels rather than just iron (ferritin is store of iron) I was anaemic for years based on iron test but when finally ferritin taken it was well below range. If you do get doctor to repeat TSH,(I forgot to look when these done) Have your blood taken first thing in the morning before food and if you are a real glutton for punishment set your alarm to go off at 4 am.(this will help raise TSH and TSH is highest first thing in the morning.). I didnt understand much about the rest.

  • Thanks mandyjane a mine of info there! 26th July blood test was 8.20am & 7th August was 9.20am. Neither did they say to fast beforehand, although they've been spare with info anyway as I've had to ask all the way - doc didn't even want to see me after putting me on the loading doses, didn't tell me what B12 deficiency was & only found out by asking the nurses that I had to have them ongoing - even then the first one said for a year, the second one just shrugged her shoulders when I asked for how long I had to take them.

    I must admit I was going to wait and get my own tests done for the thyroid as it seems from all I've read that it's a battle to get the right tests from the NHS and I'd rather spend my energy on getting better from the SACD I've got and focus on getting my business back on track then focus on the causes of the B12d. I've cut out gluten again, I've got an appointment at the ENT clinic next week where I'll ask about the thyroid stuff, don't think they're the right people but was referred there when asked about the lump in throat issue.

    I had thought the doc said my cholesterol was a bit high but sounds like it's not from what you say.

    It's sad our NHS is in this state where I just can't be bothered to fight it, it's gonna make me more ill and stressed than just turning up to my scheduled jabs, smiling sweetly and leaving again. I also think I did a better job of injecting myself than the nurse did today - she didn't clean the area and shoved it in in less than a couple of seconds - probably didn't like my request to use the other arm this time as last time my arm felt stiff for ages.

    Thanks again for all your time, attention and help!

  • What is SACD? Subacute combined degeneration?

  • Yeah, the brain fog, the memory issues, the wobbly gait (such a weird word that, gait, sounds like goat, I feel like a wobbly goat right now lol!).

  • I agree with Mandyjane. My cholesterol was hugely raised and dropped like a stone when I (after years of battling) got a consultant to prescribe NDT (with small bit of plain t3 as well). There are ways of getting hold of NDT online too.

    Once my thyroid function improved my cholesterol became text book normal. I actually use my cholesterol result as a barometer of how my thyroid is instead of bothering with TSH (so unreliable) and lab won't test free T3. And like Mandyjane mentioned, I can tell how my thyroid is doing day-to-day by how warm/comfortable I feel. If I over do things I get icy cold a few hours later. Overdoing things used to mean having a shower...

  • mandyjane I guess I don't want to miss out on an opportunity so I might phone up and say can I have T4 and ferritin as well, I just don't want to ask them for a long list of stuff cos they seem to get annoyed if you ask them more than one syllable questions [sarcasm intentional].

    I'd read that it was the free t3 and free t4 that was needed, and the whole list was " TSH, T4, T3, Free T4 and Free T3,FT4, FT3 and TPO antibodies tests TPO Ab and TG Ab" so I thought well let's see what happens at the ENT appointment which is next Tuesday, day after blood tests (not that I'm expecting much) as I thought they might be more receptive to that sort of questioning.

    But if just T4 and ferritin then I can try phoning the reception and asking nicely. One of them I hear they don't like doing cos of cost, can't remember whether that's T3 or T4.

  • Well I was Mr. Negative last night lol - did overdo it a bit yesterday, got to learn to pace myself more.

    Gonna compile a letter today to take with me when I go for my injection tomorrow (unlike the one I'm having out of the cupboard here today yay!) as Sleepybunny mentioned the coeliac ones and the NICE guidelines so that'll look better on paper than trying to explain over the phone:

    "test for total immunoglobulin A (IgA) and IgA tissue transglutaminase (tTG) as the first choice"

    So I'll also ask for T4 to be tested, and TSH again and for ferritin.

    Thanks again!

  • Cholesterol looks high to me...not super-high but it should be under 5.

  • Thanks Curlygal - I'm kinda hoping that'll lower now I'm not eating any more gluten!

  • Mine is 4.5. It was 8 when I was hypothyroid

  • you have b12 deficiency.

    you have macrocytosis - larger rounder red blood cells - and this seems to have increased between July and August.

    thyroid as measured in attached is well in range

    you don't have diabetes or pre-diabetes

    no signs of liver disease or renal issues

    tests for PA have come back negative (IFA negative is inconclusive - not sure about the GPCA - problem with that test, as far as I am aware is that it is prone to false positives rather than false negatives)

    test not pointing to coeliacs as a possible absorption problem

    your folate is low but currently still in range.

    Few other items not in line but not sure what the significance is.

  • possible that your folate levels may fall with loading shots so you might want to either up the amount in your diet or consider supplementing a small amount from supermarket.

  • Are you in the UK?

    As a non medically trained person I can see that you are Vitamin B12 deficient and your Folate level is very low, but I cannot comment on the other readings.

    What are your symptoms?

    Symptoms of B12 deficiency tend to develop slowly and may not be recognised immediately. As the condition worsens, common symptoms include:

    Weakness and fatigue

    Light-headedness and dizziness

    Palpitations and rapid heartbeat

    Shortness of breath

    A sore tongue that has a red, beefy appearance

    Nausea or poor appetite

    Weight loss


    Yellowish tinge to the skin and eyes

    If low levels of B12 remain for a long time, the condition also can lead to irreversible damage to nerve cells, which can cause the following symptoms:

    Numbness and tingling in the hands and feet

    Difficulty walking

    Muscle weakness


    Memory loss




    As for your low Folate level there is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

    Symptoms of a folate deficiency can include:

    symptoms related to anaemia

    reduced sense of taste


    numbness and tingling in the feet and hands

    muscle weakness


    Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body and your B12 levels are below the range.

    You really need to talk to your doctor to find the cause of your deficiency.

    Anyone at any age, can become B12 deficient. However, certain people are at an elevated risk. They include the following:

    Vegetarians, vegans and people eating macrobiotic diets.

    People aged sixty and over

    People who’ve undergone any gastric and/or intestinal surgery, including bariatric surgery for weight loss purposes (Gastric bypass).

    People who regularly use proton-pump- inhibitors. H2 blockers, antacids, Metformin, and related diabetes drugs, or other medications that can interfere with B12 absorption.

    People who undergo surgeries or dental procedures involving nitrous oxide, or who use the drug recreationally.

    People with a history of eating disorders (anorexia or bulimia).

    People with a history of alcoholism.

    People with a family history of pernicious anaemia.

    People diagnosed with anaemia (including iron deficiency anaemia, sickle cell anaemia and thalassaemia).

    People with Crohn’s disease, irritable bowel syndrome, gluten enteropathy (celiac disease), or any other disease that cause malabsorption of nutrients.

    People with autoimmune disorders (especially thyroid disorders such as Hashimoto’s thyroiditis and Grave’s disease) Type 1 diabetes, vitiligo, lupus, Addison’s disease, ulcerative colitis, infertility, acquired agammaglobulinemia, or a family history of these disorders.

    Do you "see yourself" among any of the above people?

    I'll bid you goodnight and wish you well

  • Thanks clivealive + Gambit62 - I believe my mother has PA, her life has been a textbook case IMHO, even misdiagnosed with Parkinsons once, now paranoid her specialist isn't a real specialist. Spoke to her tonight, she's not had B12 tested, I said I'd go through the info she needed in order to get properly tested cos the NHS don't know the latest guidelines. She's definitely gluten intolerant. I'm looking forward to passing on all the info I've learned from people like your good selves here.

    I'm taking folic acid 5mg daily now and SI daily, definitely better than last week but still brain fog, short term memory issues and wobbly gait. I've got to get some magnesium, vitamin D, potassium (eating bananas & drinking coconut water but running out fast!) & vitamin B complex... not sure what else I need, just hoping this works.

  • " I've got to get some magnesium, vitamin D, potassium (eating bananas & drinking coconut water but running out fast!) & vitamin B complex"

    I wonder if you'd be well-advised to not start supplementing your vitamin D, folic acid etc. until after you've had your blood tests for these?

  • I thought the same ITYFIALMCTT but was recommended to start the folic acid as really low plus it's also water soluble, and as for the Vit D the only amount I'm getting is a small amount which is added in the cod liver oil caps I've got from tesco - 5ug. I was thinking about not taking them both on Sunday & Monday when I have the tests.

    I could stop both but really want the B12 to work, I've only done 3 days of folic acid 5mg + 4 days of injections & feel massively better than I did last week when I hadn't been injected for a week & was very stressed!

  • Part of my concern is that biotin in B complex can interfere with some assays and distort results for autoimmune markers, thyroid hormones, (iron) anaemia, and B12.

    See, e.g., this one if you're a member of Thyroid UK (discusses work published this year, 2017)



  • ah ok thanks will take a read - this b complex I've got has 50mcg of biotin. Cheers!

  • Yes, I read about this last year and avoid biotin for a few days before thyroid test to be on the safe side

  • Take it slowly, Steve. It takes many months, even a couple of years to recalibrate it all and find which forms of everything you respond best to, but you will gradually improve bit by bit...Glad you're aware of your Mum's issues too - she will need your help given the medics lack of education on all this. You're on the right road...

  • Thanks for your encouragement ribbon yes I think it is going to take a while but at least I know what some of the issues are and not trying to use them as an excuse but can say "it's not me" - I've achieved some things I'm very proud of in my life & always wondered why certain things happen, now I have more info I know how to control those too. I'm excited about the now and the future now!

    I'm just glad I didn't wait for the NHS & had the resources available to act quickly, I still can't focus but at least I don't feel quite as much like the goldfish I did a week ago, and this is 5 shots later - the total of what the NHS has promised to give me before putting me on monthly... think I would have to be carried down there if I'd had to put up with that. You must have gone through a hell of a journey yourself, and to come back and support others makes you even more a star - thank you again!

  • Very welcome, Steve. There are many 'stars' here and on the other forums that have saved me from a horrible fate. I had SACD like you. Barely able to walk to the loo. I began the journey at 48 and am just thankful I didn't suffer my poor Mum's fate (died last year from dementia complications, untreated PA and hypothyroidism for decades). She would show me her results but then agree with the doctor that she was 'normal' - a generational thing I guess). We're lucky we have the internet and enough brains left to fix this!

  • Hi,

    "test not pointing to coeliacs as a possible absorption problem"

    "She's definitely gluten intolerant. "

    I've found from talking to people with Coeliac disease that in UK, doctors don't always carry out the two first line tests recommended in NICE guidelines...

    1) Tissue Transglutaminase Antibody test (tTG)

    2) total IgA test

    It's important to test total IgA at same time as tTG test, as people with IgA deficiency will not make the tTG antibodies so for them the tTG test will come back with a negative result.

    People with IgA (an immunoglobulin) deficiency will probably need alternative tests for Coeliac disease

    Coeliac blood tests

    NICE guidelines Coeliac disease

    See Section 1.2.2 for list of recommended tests for Coeliac disease

    I hope your mum gets the help she needs.

  • Thanks Sleepybunny! All I can see on the results is the "Tissue transglutaminase IgA level (XaJg2) which was 0.3 u/mL (0.0 - 6.9) and the note underneath that reads:

    "IgA anti-TTG antibodies are negative. This does not support a diagnosis of coeliac disease. However, if the clinical suspicion is very high, suggest a small biopsy. Serology will become negative once the patient is on a gluten free diet and false negatives occur in complete IgA deficiency."

    Which I thought was weird when I saw it - the figure's very low on the range, whatever that means lol.

    The second doc I saw said "the wheat test came back negative" and I said "well that's probably cos I don't eat wheat". I have been munching on a few cereals of late as they're here, usually if I'm not shacking up with my dad they won't be around, that's why I've been so ill over the last year cos I was having bread again - I had some a few weeks back and it made me sick. Doc asked if I was going to eat wheat in the next two weeks and I said well no but I can if he wants. He said not to bother...

    Thanks for the links, I'll have a read up!

    And thanks for your best wishes for mum, yes, it would be nice for her to feel a bit better, must admit last week I was feeling like her. But I have her strength thankfully!

  • You can read all this later, Steve. Hell of a lot of good info coming at you from all those here. Just to say I was diagnosed coeliac on gut biopsy even though my antibodies were only slightly raised. Even if I wasn't diagnosed I would have avoided wheat and gluten because they are such inflammatory substances for the PA gut. I didn't realise this before studying it all. My husband and his brother are not coeliac but are wheat intolerant. There are other proteins in wheat products that are now being discovered to be as inflammatory as gluten. Wheat is not the same as it was generations ago when it probably wouldn't have caused us such problems.

  • Thanks ribbon yes the info is amazing, and hopefully it's going to help others searching too and not just me - I'm certainly gaining bits of knowledge from searches of this forum and the FB group. As a relational database guy I can't help seeing how I could make it a whole load easier to search... need to get myself a bit better though before I start building stuff - even my concentration there I can now see was the reason I ended up growing my business so I didn't do the coding any more, I just couldn't focus. Turns out that was quite good business decision, but as I got more ill I stopped networking and blogging due to the anxiety so that meant the project pipeline dried up.

    Interesting about the gluten/wheat thing, I'll definitely have to see what's going on there cos it's flippin hard to go total gluten-free - it's even in the jars of pickled onions I have in my salads! (barley in the vinegar).

  • Don't worry, you'd get used to it easily enough when you're up to it. One gets very committed once the health benefits are seen. Funnily enough I came across gluten-free pickled onions (German brand as far as I remember in Tesco) the other day and almost cheered in the supermarket (hadn't had them for ages). Found gluten-free peanut butter last week (Kelkin). Yay!

  • Awesome! Actually I don't mind going pickled-onion free for a while, only added them as they were super-cheap. Now looking back I realise I've been perfecting survival techniques i.e. being able to eat for a week on a very low budget and not knowing why. Cos sometimes I'd be doing fine, and sometimes not. But yes, long journey... at least I have the knowledge now and the tools at hand, seems like I've found missing piece of the puzzle!

  • If you want to rule out celiacs have an endoscopy with biopsy samples taken from the duodenum. Make sure you've been eating gluten for a month or two beforehand.

    You could ask for biopsy samples from the stomach to rule out PA as well (although the negative anti-GPC test strongly suggests that's not the cause).

  • Thanks Eaoz -

    >If you want to rule out celiacs have an endoscopy with biopsy samples taken from the duodenum. Make sure you've been eating gluten for a month or two beforehand.

    Hmm... couple of problems there - I don't eat much gluten and when I do it makes me ill both physically and mentally so I'd rather not have to shove it down my throat if I didn't have to! Plus I'd rather do as little medical stuff as possible, endoscopy doesn't sound nice... {googles endoscopy} ... ok doesn't sound *that* bad, but also a trip to the hospital and have no transport and... oh, hang on, this is my laziness/lethargy talking isn't it?! I'll have to think about this one more. Now I'm not sure whether to bother asking for this as what you say suggests that this won't really prove anything:

    "1.2.2 When healthcare professionals request serological tests to investigate suspected coeliac disease in young people and adults, laboratories should:

    test for total immunoglobulin A (IgA) and IgA tissue transglutaminase (tTG) as the first choice"

    >You could ask for biopsy samples from the stomach to rule out PA as well (although the negative anti-GPC test strongly suggests that's not the cause).

    Interesting! I'll have to read up more on the 'negative anti-GPC test'. If that is so and I don't have PA then sounds like it's all down to the gluten. I can't think what else caused all the issues as a young child - wasn't drinking alcohol then & had many lethargy issues & things I remember like when I used to pass out and mother said it was my glasses that were 'too strong'... hmm. I used to get migraines, and feel faint when I stood up too quickly, and had a few let's say unexplained 'delusional' episodes. I don't think I'm crazy ;) Plus when I gave up gluten before I lost a hell of a lot of weight and felt a whole load better and life was good... for a while until I started eating it again!

    Thanks again for your help, can't believe how much and how quickly I'm learning here... thankfully I'm not stuck at NHS pace. Still, hopefully they'll get better soon - do sign this if you can -

  • This is what NICE say about the GPC antibody test -

    If anti-parietal cell antibody is not present it is unlikely that the person has pernicious anaemia, but its presence is not diagnostic as it can occur in other conditions (for example atrophic gastritis) and older people (16% of normal women over 60 years of age) [Carmel, 1992; Hoffbrand et al, 2006]. As a result, it is no longer recommended as a diagnostic test for pernicious anaemia [Devalia et al, 2014].

  • OK thanks. Right, more thinking needed but right now just getting stuff ready to SI, feeling so much better than last week, glad I got past the fear... although it's still there, just trying to ignore it!

    Would be more than happy to put all my B12 issues down to Old Rosie! ;)

  • Dear Steve. I have taken my child to a doctor today who is good at this sort of stuff. She has suggested my child but out wheat. She thinks wheat is the problem due to glycosate spraying in my child but has anyone found any edible bread gluten free. I was gluten free for a while and miserable and did not help but willgive it a try with my child.

  • I think I must be lucky as I really don't miss bread - I did at first when I gave up gluten last time, and after I moved back here last year and there's bread around I ended up getting addicted to it again but I think that's all it is, an addiction. I tried loads of alternative 'breads' but they all sucked big time.

    My dad sniggers when he says "salad again Steve" but I love the stuff, and making it - so many different colours and tastes and mixing stuff up and I can eat as much as I like of it. But he was brought up in a different world, and only worked for 2 companies in his lifetime - Heinz for many years so cupboard full of tins and Ford for many more. I think he's slowly learning a little from me though about the fact that the best food comes straight from mother earth! Not sure he'll change though, but he does like my chillis, he'll miss them when I move on, which hopefully won't be long now I'm getting B12 yay!

    There's a big conspiracy theory on the subject of wheat, youtube will no doubt furnish you with more info on that, not sure I get it but I do know last time I had bread it made me throw up a little so just keeping well away from it again now.

    Time and playing around with different recipes, that's what it takes, and listening to your body when you walk around the shop cos the more you listen the more it talks to you and goes "hmm yeah that looks good".

    Hope you find your sweet spots!

  • Oh yeah and he laughed when I said I could eat as much salad as I like cos somehow in his brain he thinks too much salad makes you fat. I'm amazed at the lack of knowledge about food his generation had. Or maybe it's just him lol ;)

  • mandyjane, Marks & Spencer gluten free range is nice (my favourite is brown seeded loaf). Tastes like real bread and if it goes a bit stale after a few days it's nice toasted. Kelkin sourdough makes lovely toast too. It can all be a bit expensive. I sometimes make bread with the g-free flour you can buy. Pancake mix is nice too, or g-free scone mix

  • Sometimes my parietal cell antibodies showed up on testing and sometimes they didn't. My MCV was consistently above 100 though and my MCHC was elevated too. I used those as clues and did my own research. I got MMA and homocysteine tested and I was clearly massively deficient in b12. Some people have been denied PA treatment because of a single negative parietal cell antibody test. Sad.

  • Well I still don't know I'm PA. I do know I have issues with gluten/wheat and the depression meant I've been drinking more than normal... but I lived in Brighton for 8 years and knew a few alcoholics there and no way do I drink anywhere as near the amount they do, but I guess we're all different. Certainly not drinking much at the moment, and to be honest now I've seen "the other side" after B12 it's taken away a lot of the reasons I wanted to drink cos I just didn't know what the hell was wrong. Turns out my diet was killing me slowly lol!

    But yes, it's a journey of discovery finding out bit by bit as you go along.

  • I used to drink far too much when I went out in my 20s and 30s. Unfortunately it does tend to exacerbate the gut damage done by PA. I can manage the odd glass of red wine now.

    As far as I know your elevated MCV etc does suggest PA and your family history. If your homocysteine and MMA are elevated that would support it too.

    And if you're folate drops and your potassium drops as a result of B12 injections then you most likely have PA because they drop from the rebuilding and repair of new cells going on when you start B12. The cell damage is caused by PA.

    For e.g. my husband got simple B12 deficiency from HPylori but didn't need any extra potassium or folate when he supplemented B12

  • Interesting info. That's about 20 new things you've now pointed out tonight to add to the research... certainly got my work cut out!

    At the moment I'm happy just to get enough energy, body and brain stability to be able to sit on my bike for ten minutes to get down to the surgery tomorrow, had to walk last week as was in no fit state. Even yesterday it wasn't totally easy, but walking that distance is tougher IMHO, ten times the amount of time to have paranoia for a start lol!

  • steve, 5mg is a lot of folate to be taking and is really the dose if you have a folate based anaemia - the fact that your folate was in range suggests that your anaemia isn't folate based. Folate levels can fall a bit when you start using B12 because you start using extra folate but the doses needed to stop this would be much lower - 400-800mcg

  • Thanks Gambit62 sounds like I'll stop taking the folate then, at least for moment until the next set of blood test results. I was just worried the B12 wouldn't 'work' as mine is low & heard it needs to be 15. Also heard methylfolate might be better. But then I hear a *lot* of things lol.

    Will stop taking them for now, had one this morning but only had 4 so far and haven't climbed up any walls yet.

  • ..I mean 'folic acid' btw, the tablets are folic acid. As I understand it, that's the synthetic folate. So probs we're talking about the same thing.

  • sorry - also meant folic acid :)

    any table that you take is going to be synthetic - the only way of getting natural folate is from food. Getting it from food is definitely best but may not always be possible if you have poor absorption

  • Hah yes, good point - well made ;)

    My brain may not be at its best right now lol!

  • ...but at least I'm not eating tables... haha ;)

  • me neither - for that I blame the key board - should be tablets of course.

  • ;)

  • I just noticed your GFR is >60 (kidney function or 'renal' function). If you're 44 it should probably be higher. Mine went from 67 to >90 after two years on B12 and the correct thyroid med for my needs. Goes to show every organ is affected by PA.

    I don't see total cholesterol but your LDL (which I call 'lousy cholesterol' just to remember it) is a bit high. Your LDL needs to be LESS than 3 and your HDL (I call this 'happy cholesterol' needs to be MORE than 1.0). HDL is the 'good' form of cholesterol you need to make hormones etc. Trigylcerides should be no more than 2.0. Those numbers I gave are the healthy lipid levels for anybody with no cardiac disease or past heart attacks etc. You can read it all online when you have the energy.

    Agree with others comments on the other bloods.

    Your potassium would be low for me. Even though 4.2 is 'normal' range, I need it to be around 4.4/4.5 when I'm injecting B12 otherwise I get low potassium symptoms.

  • Thanks for the further info - I'll have to go through and check each bit out - there's no doubt about it, I know I'm not in good shape. I was trying to sort myself out more over the summer and started cycling again but then discovered about the B12 issue and then the gluten thing. I know I'll be in better shape in a few months once the gluten-free diet starts to take shape, and now I'm getting B12 levels up I can actually get out of the house - can't believe how hard it was previously and how it was all down to a vitamin. What a learning journey!

  • Yes b12 deficiency takes a massive toll on the body. Do take it easy. I found it hard to be patient and would regularly crash from over doing things which made me lose heart a few times. But resting picked me up again. Baby steps...

  • What doesn't kill us makes us stronger, and we're still here so good sign ;)

    Gonna take me a while to get used to slowing myself down but going gluten-free will help a lot. Not easy going less on the coffee though, only had one yesterday but had three today. I love the stuff, especially grinding my beans and using my aeropress. Peppermint and roobios teas just don't cut the mustard.

  • I find coffee a major appetite stimulant.

  • I think I was using it to keep awake but the B12 is sorting that out a bit more now.

  • Thank you so much for your help mandyjane ribbon Gambit62 Eaoz Sleepybunny ITYFIALMCTT clivealive Curlygal & The_will_of_Jill - what a list! I feel so lucky you're all around.

    After starting off asking for Iron, Vitamin D and folic acid, the nurse I saw at the smoking clinic on Friday filled me out a new form with Ferritin, Total immunoglobulin A (IgA) and IgA tissue transglutaminase (tTG) Thyroid: T4 & TSH.

    Then the nurse I saw for the blood tests today added the tick for thyroid antibodies after a bit of persuasion, saying she'd probably get "told off", when I asked why she said "because they cost a lot of money". I managed to refrain from saying anything like "well I've just injected myself with B12 for the 10th day in a row and now I can walk and focus for longer than a minute, so I'm costing you less money now and in the future", or "I'm sorry, I thought the idea of having blood tests was to figure out what the problem is, I didn't realise the doctor had some kind of magical other way". I did say well it was me who asked for the blood tests in the first place because the doctor didn't seem to be interested in doing anything further for another three months.

    Anyway that's my ranty update, thank you again for all your help.

  • "filled me out a new form with Ferritin, Total immunoglobulin A (IgA) and IgA tissue transglutaminase (tTG) Thyroid: T4 & TSH."

    Total IgA and tTG tests are tests for Coeliac disease. How much gluten are you eating at moment?

    NICE guidelines recommend that a person having tests for Coeliac disease, eats gluten more than once a day for at least 6 weeks before tests are carried out.

    See Section 1.1.4

    People who have stopped eating gluten or have reduced amount of gluten they eat and don't want to start eating it again, should be referred to a gastro specialist.

    See Section 1.1.5

  • Hi Sleepybunny thanks - well looks like those were a waste of time then cos I've given up gluten again. Could've helped if they'd let me know I guess.

    Just got back from the ENT - my doc sent me there cos I was worried about the recurring small lump in my neck which I was worried might be to do with smoking but then gave up smoking and discovered what goiters were so thought the other lump in my throat might be that. ENT said it was just a small cist, put his hands on my neck said my thyroid was fine and that was it. I'm obviously in the wrong career, should've trained for 7 years to feel someone's neck and tell them everything's fine. Anyway, they could be fine, I'd just rather a more scientific method so will see what the blood tests say when they come back.

  • Are you having tests for thyroid antibodies?

    At least you are getting T4 test, some UK GPs just test TSH.

    Thyroid blood tests

  • Yup, as I mentioned in my post above I managed to get the nurse to tick the antibodies checkbox even thought she said she'd get moaned at about the costs.

    Doctor's appointment next Weds but planning on going down there Monday to see if the results are in and getting them to give me a printout so I can post them here first before I get fed the usual BS about everything being totes fine ;)

  • You might need to write a formal request to ask for copies and there may be a charge. Usually GP has to approve request so can take a few days.

    Does your GP surgery have online access to a summary medical record?

    access to medical records (England)

    Do you know if you are being tested for both TPO Ab and TG AB?

    Sometimes a third type of thyroid antibody test is carried out TSI AB but think this is not often done.

  • They were fine when I asked them the other week for my results from the tests I had in July & August - they asked which ones I wanted, I said "well, all of them please", she huffed a bit and said "well it will take a time to print them all out", I said "fine" and then got loads of printouts which I scanned and posted previously ( )

    As for whether I can see them online, well their website says:

    "Full Clinical Record ~ Not offered by [name_of_surgery_withheld]"

  • ...and as for which antibodies no I don't, there was just one checkbox for antibodies.

    To be honest, I'm not holding out much hope, I'm just getting what I can manage to get from the NHS, trying to get myself well enough to do my business then I'll get the blood tests and whatever I need from the places mentioned here where you pay and get them done, I calculate that's going to be a lot quicker and a lot less hassle than trying to squeeze blood out of the NHS stone.

    But then I count myself lucky to be in a position to do that, but now I realise what my illness has been and realise the only reason I have my own business is because I realised I couldn't hold down any kind of employment and so 'accidentally' figured out how to be self-employed.

    Tried jobs a few times but didn't get on very well with being told when to turn up and what to do.

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