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Blood test results and B12

A_Z1961

Hi All, I recently had blood tests due to long term ongoing issues. Doctor initially said it could be fibromyalgia but need to go through process of elimination . Fair enough!

Only thing to come back was low B12 deficiency, everything else is fine. I have chronic acid reflux, pain in liver/gallbladder, joint and muscle pain and stiffness, exhaustion and cfs for years. Even the inflammation blood test showed as normal. I feel some health issues are being missed out/dismissed which I have had for years. I get the process of elimination for fibromyalgia but where do I go next? I am trying to go down the WCA process with universal credit so a bit concerned that pretty much everything is coming back fine. Next fit note due on 19th March but not sure doctor will give me another one as everything coming back normal.

In regards to B12 Injections, I was due to start today with loaded injections, plus 6 more over two week period then one every 3 months indefinitely. Turned up for appointment and nurse asked for my prescription of B12. Told her I didn't have one, I hadn't been told to collect one She said I needed to go to my pharmacy to collect it. Turns out they didn't have one for me either. Phoned surgery, eventually got through only to be told my doctor had forgotten to send one through so she would put an urgent request through to collect tomorrow. That's twice my doctor has forgotten within a week, First was what blood tests he wanted carried out and second the B12 prescription. I get they are so busy and overworked but I feel i am being passed over and eventually it will all just be put down to fibromyalgia. How do I continue with the WCA/ UC50 form process if nothing is showing up and doctor forgetting to pass on simple information for tests.

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noonebelieves

https://forum.scope.org.uk/discussion/130406/blood-test-results-and-b12

Hi @A_Z1961,

I’m sorry to hear about the difficulties you’re facing with your health and in accessing appropriate support. I truly empathise with you.
When I first applied for Universal Credit and went through the Uc50/WCA process, I was still in the middle of being diagnosed. Many of my investigations initially came back normal, except for anaemia (as I have thalassemia). I struggled with chronic fatigue, pain, and sensory-motor issues in my legs, but my doctors almost dismissed my symptoms. As I could no longer cope with work, I was signed off sick.
After my employer’s sick pay was reduced to half pay, I applied for Universal Credit. I was sent a UC50 form, and in my response, I explained that although my investigations had mostly come back normal, I was still experiencing severe symptoms that significantly affected my ability to work. Since I did not have much medical evidence at the time, I provided an in-depth explanation using the UC50 descriptors. I also included written statements from my church pastor and one of my close friends to corroborate my deteriorating symptoms, adding these under the “UC50/Other Information” section at the very end of the form.
To summarise, I later had a video assessment with a physiotherapist and was awarded LCWRA. I want to assure you that a lack of confirmed medical evidence does not automatically mean you will be denied. Instead, focus on explaining how your symptoms impact your ability to work and why you are currently unable to return to employment. This may help with your application. I also found the guidance on the Benefits and Work website and the Citizens Advice website extremely helpful.
In my application, I also included a detailed cover letter outlining when my symptoms began, how I frequently sought medical attention from my GP, and how despite normal test results, my symptoms persisted. I mentioned my plans to seek further specialist assessments. Additionally, I attached a personal daily journal where I recorded all my symptoms such as headaches, vision issues, flu-like fatigue, abdominal problems, and pain(including even minor issues). I used body charts to illustrate affected areas. The physiotherapist who conducted my assessment appreciated my journal, as it provided a clear timeline of how my symptoms fluctuated, progressed, or persisted.
I mainly want to reassure you regarding your concerns about the lack of medical evidence.
Regarding your ongoing symptoms, it may be helpful to openly discuss them with your GP and make use of the PALS (Patient Advice and Liaison Service) to reach out to your existing consultants in pain management, neurology, gastroenterology, or any other relevant departments. You could send them an in-depth timeline or symptom diary to highlight your deterioration and request follow-ups or further investigations such as MRI scans or nerve conduction studies.
Of course, this is not medical advice do not know what other tests you have already undergone-but I’m simply sharing what worked for me. I had to persist and fight through numerous challenges, long waiting lists, and repeated dismissals before finally receiving in-depth investigations and several diagnoses. The journey was extremely difficult, as my condition worsened over time, and it took me more than a year of testing to get answers. I understand that, for you, with CFS and fibromyalgia, this process may be even more challenging.
Please also take care of your mental health during this journey. I personally struggled with crippling anxiety and depression and still deal with it today. Fortunately, I have access to pastoral care through my church, where I can discuss my concerns confidentially. Now that I receive PIP, I also use some of the payments to access private counseling every fortnight.
With all due respect to the NHS, the standard of care, accessibility, and timely support for individuals with mental health struggles is disappointing.
Apologies for my long response, but I wanted to provide as much detail as possible since I was in the exact same position two years ago. Even though I still suffer from multiple physical, sensory, and mental health issues, and my quality of life has deteriorated due to long-term disability with poor mobility, I find it extremely beneficial to have both PIP and LCWRA. After all the effort I put in, I now have a responsive medical team aligned with my care.
Never give up.
I also faced issues with my fit notes in the beginning. My GP once told me, “How can I issue a fit note if all your investigations are normal?” This led to awkward arguments, but I firmly stood my ground until I finally got one. The process made me feel a lot of guilt and shame, but I never gave up.
If your GP is hesitant, push for them to issue a sick note. If they refuse to understand your struggles or delay your B12 prescriptions, you have the right to request a GP change under the Equality Act.
Additionally, if your GP practice is signed up for virtual GP services like Livi or HealthHero, consider using them. These services can issue fit notes and prescriptions quickly. I have personally used Livi, and I still find them extremely helpful.
You deserve to be treated with respect, kindness, and dignity by your healthcare providers. I’m truly sorry that you’re being made to feel dismissed, and I can genuinely empathise with the struggles you are facing.
I wish you the very best with your UC50/WCA and in securing the right healthcare support. Please take care of yourself, stay positive, and keep your head held high.
With my best wishes🤝🤝

noonebelieves

https://forum.scope.org.uk/discussion/comment/991268#Comment_991268

Apologies @A_Z1961 , I forgot to add. There is a £19.95 fee to access the extremely useful UC50 Work Capability Assessment (WCA) guide (the one I used for guidance on the Benefits and work website and there is a 7-day free trial period as well.

A_Z1961

Hi @noonebelieves , thank you for your long in-depth response, I appreciate the effort you took to impart this information .

I started my first (finally) B12 injection and also had a fasting glucose blood test today. I've been very tired (little sleep last night) and sore over recent days so I'm pretty wiped today. I also received results from hand x-ray yesterday and osteoarthritis is present. All receptionist said was, what medications are you taking for pain management? My next doctor appointment is on the 20th March but no mention about any scans or imaging for the rest of my skeletal system which I am in pain and stiffness with and I really want an appointment set before the 20th, it's only the 5th today. Hopefully I can bring that up in the 20th. Meanwhile my fit note runs out on the 19th (day before doc appointment) so I hope my doctor will issue another with the view of further investigations..

I started a health diary about two weeks ago although I have been living with issues for years. It's only this past year things have progressed and got worse hence my going down the wca/fit note route.

It isn't easy to change doctors where I live. You are literally assigned which surgery you can go too not necessarily the best or closest one. Even the nurses who carry out blood tests and injections are placed in old closed down surgery buildings and the rooms are rented out. It's a messy system here. Too many people, not enough surgerys and merging with other surgerys so various staff members are planted where there is room for them to go. I have been with them 11 years and it's only over the past 3-4 years it got this bad, although even back when I first tried to register when I moved here the NHS authority assigned which surgery you could join.

I understand it is all such a long slow process, then you have to "prove yourself" in regards to your assessments and also with the wca and benefit changes it seems to be making it harder. Yes it may take years to implement but hey, if they want to change something overnight, they will.

My conditions aren't new, they are just worse and some are confirmed or changed since 1999/2000. I never went down the wca with universal credit before although all my conditions are in my journal. I'm 64 soon so not exactly a youngster either so its all a bit daunting. The fact they raised the state pension age to 66 in 2020 annoyed me and next year it goes up to 67 angers me. Yes maybe people are living longer but that doesn't mean we are necessarily healthier. If I fail the wca assessments I will be pushed to continue job searching, retraining etc for another 3 years which I don't think I can take. I've held off this long before going down the health route and it's only out of necessity and worsening of conditions that's brought me here.

Take care of yourself too!

noonebelieves

https://forum.scope.org.uk/discussion/comment/991993#Comment_991993

Hi @A_Z1961 ,
Thank you so much for your kind words. I’m sure our lovely moderators and gurus will have more to offer than me in terms of expert advice for your unique situation.

Looking at your additional health struggles and deterioration , I wanted to ask: Have you considered applying for PIP if your symptoms are affecting your day-to-day function, mobility, etc.?

I’m sorry to hear about your hand arthritis and the worsening pain and stiffness. Arthritic hand pain along with stiffness must be functionally debilitating for you! I can also sense your struggles in accessing quality healthcare through your GP practice. Unfortunately, this seems to be a widespread issue at a national level. However, there are ways you might be able to persuade your GP-at the very least-to make referrals to rheumatology, orthopaedics, or pain clinic consultants, especially now that they have evidence of osteoarthritis from the X-rays.

In my previous GP surgery, I once used a charitable service called POhWER (suggested by a friend) to advocate on my behalf, as I felt my concerns weren’t being heard. This finally led to a referral and subsequent hand surgeries. There may be other disabled patient advocacy services that others can suggest, but this is the one I have personally used.

I hope your blood glucose results come back normal and that you slowly start benefiting from your B12 shot.

GP Appointment :If possible, try to make a note (or have someone do it for you if you struggle) of the key issues you wish to discuss with your doctor on the 20th. My partner and I started doing this based on advice from the POhWER advocate, and we have found it extremely useful. I now do this for every appointment as a reminder.In my experience, due to pressures in the healthcare system and frequently changing GPs, doctors often focus on a single test or marker (such as B12 levels) and don’t have time to review the full history unless we summarise or remind them .This was an ongoing issue for me for a long time with my GP visits resulting in poor holistic healthcare.

I hope you receive your fit note extension on the 20th and have the opportunity to discuss your deterioration, pain, and possible referrals during your appointment. Once you get the fit note, I’d recommend immediately updating your Universal Credit journal to ensure continuity of your sick days. Depending on the GP, they may also backdate it by a day to the 19th.

Another useful tip-if you haven’t already: Most GP surgeries provide printouts of consultation notes for free through reception. You can also request full online access to your medical records, as many GP surgeries now have systems in place for this. You are legally entitled to have access to your records. Please have some ID on you, as they usually require verification for first-time access.For example, my previous surgery used SystmOnline, while my current one uses Patient Access. If you have access to such a system, investing in a basic printer (if affordable) can help. At a minimum, it allows you to track your GP visits, referral decisions, and key dates, which can be helpful when filling out UC50 descriptors, the “About my disabilities” section, and the “Other information” section of your WCA or PIP application. I now have access to this and is incredibly helpful for me to print off consultant letters, GP notes, referrals and use it to order my repeat prescriptions.

I also hear your frustration regarding the government’s decision to raise the pension age. To be honest, I believe our government has completely lost the plot when it comes to supporting disabled individuals and pensioners.
I am active on other forums as well, and all I see are people crying out for help. There needs to be a fundamental shift in the behaviors, attitudes, and beliefs of those in power. While I am no political expert, I have personally felt deeply hurt by the actions ,statements and policies of certain politicians and DWP personnel. Many vulnerable people are suffering due to the government’s one-sided, non-inclusive policies, and I truly empathise with your struggles.

For now, I hope you can focus on your health and well-being, and I trust that your GP appointment goes well on the 20th. Wishing you all the best in getting your WCA-UC50 forms completed.

Take care

A_Z1961

@noonebelieves , hello again and thank you again for your wealth of information.

To be honest I've heard such nightmare stories about wca and pip so my main concern right now is 1) trying to get all diagnosis in regards to filling out UB50 form 2) get all 3 consequitive fit notes 3) get my wca.

When I went to my doctor on the 18th Feb to try and talk about my conditions and get a fit note I barely got 2 words out not because I couldn't speak but he literally said, "I'll send you for blood tests, a hand x-ray and its very likely fibromyalgia".That was it, he didn't examine me or take in anything else I was trying to say. In preparation I had written a summary of when my conditions started, then how my health deteriorated from 2021 then more so in 2024. All the relevant information was in writing. He didn't even look at it.

In regards to the Patient Access portal I asked about that and I have to go in and pick up information needed so that * can access this. As I am going in in the 20th she told me to phone up to 5 days prior and they can arrange for the information to be ready for me. My surgery isn't close by and I don't drive so only go when necessary for appointments. The reception area is now literally just a place where the receptionist takes your name and that's it. All calls, making appointments, doing anything else now takes place in another part of the building which patients don't have access to. So if my doctor says after my consultation, make an appointment you can't just go to reception desk there and then and do it. You have to go home then phone up the next morning between 8 and 10.30 for appointments. Anything else you phone after 10.30 and can be in hold for a very long time waiting to get through.

In regards to uploading Fit Note info into Journal I always do this as soon as I get home. I'm ultra organised and forward planning, I never leave things till later .

I'm feeling a little better this evening. My head was very sore all over yesterday and up until this morning but it seems to be subsiding now. I also have a rash on my neck and behind my knee (adverse affect of. B12). My body is ultra sensitive to any type of medical intervention or substance and tends to reject it by making me ill. It knows toxins have been administered and it doesn't like it. I have B12 shot 2 tomorrow morning so let's see how that goes .

A_Z1961

@Catherine21 I have to say no, I didn't experience any of those symptoms.

My peri menopause lasted an exceptionally long time. Hot flushes started with avengeance at 40, didn't complete my menopause until 10 days before my 60th birthday. During my 58th year I had one period and I thought great but then I had a horrendous 2 week bleed so had to start my final year again. Prior to age 58 I still bled every month at times it was horrendous. So my peri menopause lasted 20 years, as well as CFS from 1999 and other health issues so it's hard to know where something started, ended and/or changed.

noonebelieves

https://forum.scope.org.uk/discussion/comment/992454#Comment_992454

Hi again @A_Z1961,
I’m truly lost for words—your GP situation sounds nightmarish, and it really resonates with the challenges I initially faced, which led to delays in assessments and referrals.
Since you have a long list of issues to discuss and live further away, you might want to ask for a double appointment slot. I’m not sure if all surgeries offer this, but it’s definitely worth a try. I really hope everything goes well on the 20th, both in getting your fit note and discussing your concerns with the GP. I also hope you find some relief from the B12 side effects, just as you did with your head soreness.
I truly empathise with your situation. Unfortunately, many systems in this country remain highly inaccessible for vulnerable disabled individuals. The best advice I can give is to hang in there—and make sure to give feedback to the practice manager about the accessibility issues at your GP surgery. I’ve noticed that surgeries sometimes become more responsive when concerns are formally raised—or even escalated further if your voice isn’t being heard.
As I mentioned before, there are advocacy services available, so if you ever feel unheard, keep pushing for your rights through all the available means.

Best Wishes

noonebelieves

https://forum.scope.org.uk/discussion/comment/992714#Comment_992714

Hi @A_Z1961 ,I hope your GP appointment went well and that you were able to have a good discussion and get your fit note.

I was thinking about you yesterday 😊

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