Should I be pushing for further investigation? Help appreciated ❤️

[Battypatty2]

Hi everyone,

It's my first post here after watching over the last few weeks! I'm from the UK and having a bit of a mare getting my GP to seriously investigate what's wrong with me. I'd really appreciate your advice on my blood test results in particular. Apologies in advance for the essay 🙈. Skip to the end for the results I'd love help on!! I've been to the doctor's 4 times now and not getting far 😭.

In terms of background, I'd been suffering sinusitis type symptoms since November 2023, didn't think anything of it at first then realised this was a head cold that was lasting too long. We'd moved into a new house with some signs of mildew so put it down to that.

Flash forward to March and I caught an illness off a colleague. Symptoms were a massively swollen tongue, raw red throat and generally feeling unwell (although not massively feverish). Took me about 3 weeks to feel somewhat human. The first day of illness also coincided with my period beginning. I was treated with antibiotics for strep throat... This cleared up quickly then I developed a rasp when breathing (though my chest was clear) so was put on steroids and that was that, it cleared up.

My glands were still swollen since and got worse in April and I felt generally not myself (prior to the illness I was in the gym twice a week and walking lots). Still also feeling the sinusitis type symptoms (really sore face, sore eyes, headache). Visited the doctor and was told my glands would still be swollen from my illness come back if still swollen in 2 weeks. Felt able to go for light walks but still not ready for the gym.

Still no improvement in May (still had swollen glands too) and felt bad on my first day of my period again so saw the doctors again and then they started testing me for asthma, came back all clear in June. By this point in June I had started to develop a high level of fatigue that meant I needed a nap during the day to function.

Went back to my doctor's in July feeling utterly flat in mood and exhausted. Unable to do light exercise by this point and also developed dizziness, headaches, brain fog, twitching thighs especially at night, high anxiety (never had anxiety in my life!) and my heart feeling fluttery. Glands still swollen. Doctor agreed an 'MOT' was needed and was particularly interested whether my period was playing a part (as they are very heavy).

From the below results the doctor initially said 'some borderline results, probably insignificant but let's test again in three months'. So at this point I'm reaching rock bottom mentally and starting to feel like a huge hypochondriac! I pushed back at the suggestion to retest in 3 months and have been told to take Ferrous Fumerate 322mg once a day, have my contraceptive implant removed and be retested in two months instead.

Naturally I've spent a lot of time on DR Google during this whole thing so I'd love your input regarding my B12, ferritin, folate and MCV results.

Only other thing to add is I'm 32 years old, female, eat 120g protein per day (as part of my gym focused diet, and only 25g of this from 'added protein yoghurt'). I didn't think much of it but I get pins and needles in my arms and feet when they are still for too long or are elevated, particularly when sleeping.

Otherwise the doctor tested for polycystic ovaries and thyroid and diabetes, this all came back clear. My glands are still swollen to date. I've always been someone who is tired but never unable to do daily activities.

Thank you so much in advance if you put up with my essay and made it this far!! ❤️❤️

Results:

Coded entry - Mean cell haemoglobin level (XE2pb) 32.5 pg [27 - 32] - Above high reference limit

Coded entry - Serum folate level (42U5.) 5.8 ng/ml [3 - 20]; At levels 3.0-4.5 ug/L, consider other causes of macrocytosis but if; clinical suspicion remains high, consider a trial of therapy after; B12; levels have been investigated. Monitor FBC/MCV for response.

Coded entry - Serum ferritin level (XE24r) 36 ng/ml; 30-100ug/L: Indeterminate ferritin result.; Iron deficiency cannot be excluded in the presence of concurrent; infection, inflammation, malignancy or liver disease. In the context; of these conditions, or anaemia being present, suggest transferrin; saturation to further investigate. Otherwise, this represents a; ferritin result within the normal range.; Ferritin interpretation in adult females:; <15ug/L: Consistent with absolute iron deficiency; 15-30ug/L: Indicative of low body iron stores; 30-100ug/L: Indeterminate ferritin; 100-310ug/L: Normal ferritin; >310: High ferritin

Coded entry - Serum vitamin B12 level (XE2pf) 152 ng/L; Below low reference limit; Vitamin B12 interpretation:; <100 ng/L: likely deficiency.; 100-145 ng/L: possible deficiency.; 145-200 ng/L: may still indicate deficiency in a small proportion; >200 ng/L: deficiency not likely to be present.; >914 ng/L: Raised serum vitamin B12.; B12 146-200ng/L: In a small proportion of patients, deficiency; may be; present and further investigations could be considered - this; would; usually only be patients under neurology or haematology.

Thank you again!

[Narwhal10]

Hi Battypatty2,

I have read everything, unfortunately, I do not have time to reply fully today. By tomorrow. Welcome to the forum. Sleepybunny may be able to help in the meantime but it does depend on their health.

This screamed at me :-

Serum vitamin B12 level 152 ng/L;

Vitamin B12 interpretation:; <100 ng/L

Where on earth do you live with a cut-off level off for a Vitamin B12 level of 100 ng/L ? You do not have to write that on Main Page. Excuse me a moment whilst I stop breathing fire and my wings stop flapping.

Please join the Pernicious Anaemia Society.

pernicious-anaemia-society.org

Once you have a Membership Number, ring them, they need to know that this is what patients are facing to be diagnosed with PA/B12 deficiency. Plus, advise further.

(I’m Welsh and on occasions turn into a right Dragon). 😉

[Battypatty2 in reply to Narwhal10]

Thank you so much I'll take a look into that now and look forward to your full response! I live in Bath - what are the cut off points like in Wales? I work in Cardiff and my colleagues laugh at the fact I have to pay for prescriptions and wait 4 days to be able to go pick them up 🙈.

I've reached that point of exhaustion, anxiety and flat mood that I just don't even know how to push back anymore!

[Narwhal10 in reply to Battypatty2]

Oh Battypatty2,

The levels in Wales are all over the shop; inconsistent Data. Lowest here is 130 ng/L for B12. Go 20 miles down the road it is higher, 20 miles up it’s similar to that.

So, this a General Overview :-

You really need to learn about this illness because it is totally bizarre. Do become a member of the Pernicious Anaemia Society.

You do not need to have an exact diagnosis, you can be involved in research and they are the ONLY organisation that can produce statistics. Plus access to Support groups. Please know that there is lots of research stating this disease/illness affects people over 65 years of age which is incorrect. We need your Data as you are 32 years of age. They have Support Groups and access to accurate information. Here is a list of misdiagnoses too. Please be very aware of them :-

b12info.com/misdiagnosis/

Plus, buy or download Dr Joseph Chandy and Hugo Minney (PhD)’s book Vitamin B12 Deficiency in Practice.

b12d.org/book

GPs do not know about it because they have so many other diseases to learn. Plus the politics, policies and bureaucracy. Like silly cut-off values. Next step go back to your GP and push for :-

1) Intrinsic Factor Antibody Test (IFAB test)

OR

a) An MethylMalonic (MMA) test. This explains a bit :-

testing.com/tests/methylmal...

OR

b) A Homocysteine test. This explains a bit :-

labtestsonline.org.uk/tests...

2) Keep a symptoms diary.

3) Food Diary and Appetite. Whether you crave certain food, gone off certain food. Early fullness, pain, bloating, heartburn, flatulence.

4) Note your stools. That Streptococcal pharyngitis was treated with Amoxicillin which you took 3 times a day for five days by tablet ??? Guess what that has either :-

i) Upset your Gut Microbiome* - feel free to Google. In which case the NHS only offer a H.Pylori test. (I need to check if there’s not another stool test.)

ii) An Infection can trigger the Genetic Risk factor for Autoimmune Diseases. So :-

* Coeliac Disease (it’s called a Tissue Transglutaminase IgA (tTg-IgA). Please ensure you have been eating Gluten for 6 weeks.

AND/OR

* Pernicious Anaemia

5) Ask Family members do they have B12 injections or have any of the possible Misdiagnoses. (Family History).

There are lots of myths and misconceptions about this disease/condition. Do, do be careful in what you read, note the Author, country and date. Please get hard copies of your blood and urine results. Please note the range and the cut-off levels for B12, ferritin, vitamin D and folate in YOUR area which you have undertaken. They vary wildly within the U.K. which is known as the Postcode Lottery

6. Please do NOT allow your B12 levels to be re-checked once treatment has commenced. NOT even the IFAB test. It is futile.

7. Keep a symptoms diary.

This is a massive learning curve for you. Take it slow and steady. Most of self treat (SI) because we cannot survive on 3 or 2 monthly after loading doses of 1 mg/ml of Hydroxycobalamin intramuscularly Every Other Day for 2 weeks. We have heard from medics that we are addicts and it is toxic. All rubbish.

Lastly, please be very aware of Current Affairs. NHS England GP’s are preparing to Strike. Not in 60 years have they undertaken this. An offer of a 22.3% Pay Rise has been put on the table, it is being discussed. There are some unfavourable remarks. We do not no the outcome. If they do, the NHS will come to a Standstill.

The Ambulance Drivers, Nurses and Junior Doctors’ Strikes cost the Tax Payer £1.5 billion. We need a Plan for you.

😉

[Battypatty2 in reply to Narwhal10]

Narwhal10, my Welsh dragon, thank you so much for taking the time to read through all my points and address this I really appreciate it. I have registered to the PAS and have arranged an in-person appointment with a different GP for this afternoon.

I'm torn between going in with the intention of pushing for B12 treatment now, rather than giving them the opportunity to test things like intrinsic factors and then have borderline results that I have to push back on again. I guess it will depend on how receptive this doctor is.

I'll report back later once I've had the appointment!

[Battypatty2 in reply to Battypatty2]

Just back from the doctors and going to copy and paste the outcome I replied to Kbird with..

The doctor said 'if I was to treat you as PAS based on neurological symptoms and your result right now that would mean injections every 3 months for life, which I don't want to do it it's a mistake.'. She also said that the NICE guidelines aren't based on 'the real world' and if we listened to that all of Bath would suddenly need injections. She said she knows there's a lot of debate on this at the moment but guidelines from our hospital district at the moment state not to treat without neurological symptoms or confirmed PA unless your results are below 100.

I reiterated how exhausted I am so not in a position to 'wait' for a follow up blood test in 2 months as last suggested. So she's requested an Intrinsic Factor test sooner (in the next week) and has asked me to take oral supplements.. She's agreed we can retest in one month (got them down from 3 to 1 month now lol) and use the IF result combined with whether there's an increase in B12 from supplements to determine if it's PAS or malabsorption.

So feels like another hoop to jump through again but at least it's going in some kind of direction I guess. I'm hoping you're not all going to say I should have pushed back further lol I don't feel I know enough yet to in essence tell a doctor I think they're wrong not to give me a jab now lol

[Battypatty2 in reply to Narwhal10]

Narwhal10, I just wanted to reach back out to let you know I managed to get the green light for B12 injections yesterday and they've started today. I wouldn't have had the confidence to push without your help and without joining the PA society like you suggested. Thank you so much ❤️.

It's only the beginning and they've only offered 6 injections every other week (not EOD) but I'll see how I get on and push again if needed. Excited to have a direction now!

[Meggymoo63]

ohhh you need to go back to GP as enlarged red cells, low folate and low B12 and showing nerve damage by the sounds. This was a mirror of me over 10 years ago. You have to fight for treatment to get you back in good health. Frustratingly GP are quick to fob off 🤷🏼‍♀️

[Battypatty2 in reply to Meggymoo63]

Thanks so much, do you mind if I ask what your experience was? If you have any tips of how to push back I'd really appreciate that! After I asked for a follow up conversation after recieving the test saying 'borderline results but probably insignificant, retest in 3 months) the doctor was very shirty with me on the phone. So struggling to know how to approach it.

[Cherylclaire Forum Support]

Back in 2016, my folate was 5.5 ug/L , my ferritin 46.3 ug/L and my B12 was at 196 ng/L - but luckily for me, the range started at 197 ng/L.

So guess what ? My GP said "Thank goodness we've caught this early." I had the 6 loading B12 injections, then a three-monthly maintenance injection. Because my gums continued to bleed and my hair was still falling out*, my GP gave me 3 months supplements for both folate and ferritin. Glad of that - because I felt like I was creeping slowly downhill on hands and knees !

This was a good start to a long journey.

Getting well can take a long time. You are B12 deficient and this needs addressing first.

If you have not done so already, get your vitamin D and thyroid checked too. I was found to have osteoporosis of the spine and thyroid was struggling a bit. Both conditions improved - osteoporosis now demoted to osteopenia with prescribed daily medication, and thyroid on it's own, once everything else addressed properly.

Regular monitoring of all of this will be important - except B12 which, once injections start, will be high. Hope this happens soon.

*These were not my only remaining symptoms after B12 injections had started. I was later diagnosed with functional B12 deficiency by an MMA (methylmalonic acid) test result being raised. This meant an inability in transporting B12 to cells and tissues - and frequent injections. MMA took 3 years to shift into range, even with the frequent B12 injections.

[Battypatty2 in reply to Cherylclaire]

Thank you so much! My thyroid was tested with Serum TSH level (XaELV), result 2.36 miu/L [0.38 - 5.33]. So they've said TSH within limits excludes hyperthyroidism as well as primary (but not; secondary) hypothyroidism. I can't see any mention of vit D being tested in my results - can I ask what would be the purpose of that? Thank you again ❤️

[ClaireWF1346]

I can't advise as well as others will as I quite new to this whole process, but out of interest, do you mind me asking how your GP tested for PCOS? I was diagnosed in 2014 via an ultrasound but it I have always been curious as to whether anything else should have been done. Your B12 level seems really low to me. The 'healthy' range in my results is between 211.0 - 911.0. I was 194 at the lowest test point and the specialist in Cambridge told me this is very low. You must feel awful! And I am sure you are NOT a hypochondriac. You know your body better than anyone else. As for anxiety, I also really suffered (never had before) and that had a knock on effect on my sleep. I'm just over 3 months into self-injecting B12 and glad to report that the anxiety has mostly gone away, so have hope that it will.

[Battypatty2 in reply to ClaireWF1346]

Thanks so much Claire! All of this info is so useful - my doctor's text when I asked if they'd received my results (I have the NHS app so knew they did) was that all of my r wilts were satisfactory except b12 which was borderline but probably insignificant.

This is the bit relating to PCOS x

Coded entry - Serum testosterone level (XE2dr) 2.3 nmol/L [< 2.7]; If the symptoms correlate, a Free Androgen Index >9.0% supports the; diagnosis of PCOS but is not diagnostic.; For use in other clinical contexts see local guidelines

Test result - Free Androgen Report, Normal, No Further Action

[KBird01]

From experience, I know how tempting it can be to strive for that formal diagnosis from your GP, but 3 months is an awful long time if you aren't well and your condition is deteriorating.

Perhaps push your GP to treat this again - following Narwhal10 's advice to join the PA society for support and advice. Be prepared to have to put things in writing to your GP and also to make yourself deeply unpopular. It's tough, but you're in good company here!

My experience was a complete refusal by GP's to accept I had any issues with anything from B12 to iron levels. This led me eventually to treat myself. I'm finally back where I should be health-wise, exercising and enjoying the mountains again. So yes, push for the formal diagnosis and treatment, but also understand you may not get this, so set a cut off date for yourself, at which point you will treat yourself and get the health you deserve back again! Good luck! 😊

[Battypatty2 in reply to KBird01]

Thanks KBird01, reading a second vote of signing up to the PAS gave me the kick I needed to do so this morning. Won't have a chance to deep dive the site until this evening but I did manage to book an appointment for this afternoon with a different GP. I called the helpline and leave a voicemail in case they're able to provide guidance ahead of my appointment this afternoon. It's so reassuring to hear you have fully bounced back.

How long would you say you were aware of symptoms before you tried to seek help and was refused? I'm finding it hard to know when I really went 'downhill' and wondering if I felt like this for longer than I cared to accept. This whole year feels very foggy tbh! I used to exercise 5 times a week and I hope I can get that oomf back!

[KBird01 in reply to Battypatty2]

Glad you're taking positive steps already. 😊

Like many on here, I was subject to medical gaslighting. As a woman of a 'certain age', everything was put down to the menopause or depression. I was very much given the 'hysterical woman'/difficult patient/hypochondriac label. It probably took me a couple of years of battling before I thought 'sod it' and decided to take matters into my own hands. I've never had a diagnosis of PA, so don't know whether I have this, or just had a deficiency from my diet as a vegetarian of 30 years. In the end, I decided it didn't matter, as the treatment was the same.

Looking back on my GP records, it appears everything stems back to a bout of stomach issues I had approx 6 years ago. I was given PPI's and there was the start of all my symptoms - exhaustion, low mood, lack of concentration, pins and needles...

I'd describe it as more of a journey though - trying things myself, doing blood tests, etc. I discovered late last year I have had low ferritin for years, but this was never picked up (same with my vitamin D), so those 2 things have been the final pieces of the jigsaw for me.

Treating my iron, got me back on consistent form at the beginning of this year after about 10 weeks, but obviously these things are individual to us all. Don't lose hope though. I and many others are proof there is a fairly easy solution to this once you take positive action and you can absolutely get back to the things you love. 💪💪💪

[Battypatty2 in reply to KBird01]

Thanks so much KBird01 interesting that something kicked it off for you, I wonder if my illness in march and/or antibiotics and steroids had a part to play.

Just back from the doctors, she said 'if I was to treat you as PAS based on neurological symptoms and your result right now that would mean injections every 3 months for life, which I don't want to do it it's a mistake.'. She also said that the NICE guidelines aren't based on 'the real world' and if we listened to that all of Bath would suddenly need injections. She said she knows there's a lot of debate on this at the moment but guidelines from our hospital district at the moment state not to treat without neurological symptoms or confirmed PA unless your results are below 100.

I reiterated how exhausted I am so not in a position to 'wait' for a follow up blood test in 2 months as last suggested. So she's requested an Intrinsic Factor test sooner (in the next week) and has asked me to take oral supplements.. She's agreed we can retest in one month (got them down from 3 to 1 month now lol) and use the IF result combined with whether there's an increase in B12 from supplements to determine if it's PAS or malabsorption.

So feels like another hoop to jump through again but at least it's going in some kind of direction I guess. I'm hoping you're not all going to say I should have pushed back further lol I don't feel I know enough yet to in essence tell a doctor I think they're wrong not to give me a jab now lol

[KBird01 in reply to Battypatty2]

That sounds like a familiar pattern. So just because loads of other people present with these symptoms, means you shouldn't have the recommended treatment... hmmm... See what I mean about medical gaslighting?! 😑 What they actually mean is 'Our budgets would be sunk because no-one's allocated funding to deal with all the relatively simple issues people are suffering from, so we'd rather everyone kept coming back, or living a less than sub-optimal life'.

Others will tell you better than I, but I would be careful with the supplementation whilst you're undergoing tests. I think I've seen people mention the IF test can be affected by supplementation, but I'm not sure. Best to check if you've got this far.

😊

[Battypatty2 in reply to KBird01]

Ah thank you for flagging, I'll try the PAS helpline again tomorrow see if they can give any further advice. I know part of me doesn't want to take supplements in case this gives any false readings! Likewise the other part of me just wants to do anything possible to try and start feeling better, the thought of going on another month like this is horrible. Feeling unwell is making pushing back and articulating myself to doctors so difficult 😭

[KBird01 in reply to Battypatty2]

Good idea about PAS. That's why I think it's wise to set an end date after which you'll think it's not worth the wait. If the GP rules everything else out, the treatment's the same anyway... Good luck! 😊

[Battypatty2 in reply to KBird01]

Hi KBird01, just wanted to follow up and let you know I finally got the green light for b12 jabs yesterday and started them today! It's most likely not the end but I'm so glad to have finally been validated. Couldn't have done it without your genuine support and interest and listening to me. And I did join the PA society and called the helpline - certainly couldn't have done it without their advice. Thank you ❤️

[KBird01 in reply to Battypatty2]

That's fantastic news and good on you for sticking with it! 👊 It's not an easy thing to get through when you're feeling below par. Here's to a swift recovery and getting back to the things you love. That's made my day! 😊