Help with diagnosis (GP) and anyone sought help from private healthcare?

[Beccy_123]

Hi, I recently learned about PA after googling my comprehensive blood test results recently. I joined the PA society this weekend and I have found myself here after chatting to a lovely lady in the helpdesk there. I am a wellness coach and have some knowledge of nutrition and improving resilience holistically.

I haven't been diagnosed with PA but have a lifelong history of symptoms associated with PA and IBS and episodes of chronic fatigue. I am now 46 years young. The last major set back was 6 years ago following a particularly stressful period in my life, when I eventually learned about liquid adenosylcobalamin and methylcobalamin liquid and folate supplementation, after failing to get anywhere with my GP and to date I still don't have a diagnosis of any cause of the common symptoms I have.

6 years ago, supplementing for B12 etc, alongside major dietary changes and other supplements aimed at healing the liver and gut, turned my life around. I gave up trying to get help from my GP at the time but looking back, bloods did show evidence hinting at PA. I learned about methylation and B12 issues after reading books by Anthony Williams (AKA "Medical Medium"). He suggests anaemia and methylation issues involving B12 and folate are not necessarily untreatable and are potentially reversable (including auto-immune disease) and that pathogens are often indicated.

I must admit, following the protocols outlined for epstein barr and heavy metals was life changing. After 6-9 months supplementing for B12 and folate and a eating a plant based diet aimed at reducing pathogens and healing the gut, I realised what it felt like to have energy and live a relatively 'normal' life. I also realised how unwell I was previously.

I was relatively well until last November and again this June when I had COVID-19 and my symptoms returned (mostly stomach pain, bloating, chronic fatigue, brain fog, IBS) and I turned once more to my GP and had lots of bloods in July (excluding B12 and folate) and again earlier this month (including b12 and folate serum - which showed I had too high serum B12).

Lots of conditions were excluded such as cancer and IBD, , etc. Because I take multi B vits, and additional B12 and folate, my test didn't indicate PA, but other elements indicate PA, or some sort of anaemia. Currently (8th september) tests show:

* >20.0 ug/L serum folate ('normal')

* 1062 ng/L serum B12 ('abnormal')

* 77 ug/L serum ferritin ('normal')

'abnormal' or borderline results in the following:

serum urea level 1.7 mmol/L (low)

Total white cell count 4.0 10*9/L (low)

Haematocrit 0.365 (low)

MCH 32.6 pg (high)

lymphocyte count 1.2 10*9/L (low)

RBC count 3.91 10*12/L (borderline low)

platelet count 157 10*9/L (borderline low)

In september, I requested a test for H pylori due to heartburn following covid. This was negative but then I already had relief of bloating and heartyburn symptoms following a protocol I completed the month previously.

Overall the blood analysis indicate a worsening of my health since July (B12 and folate not tested in July, but historic testing in 2016 show similar B12 and folate results when I was supplementing). This is a concern clearly and follows a worsening of my fatigue and brain fog/listlessless.

I am struggling to get a GP appointment to discuss my latest test results and want to be armed with the right information for when I do. I plan to download leaflets from the PA society and might write to the practice manager to raise my concerns about the need for a diagnosis and give them info on PA. Of course it might not be PA and in any event, it needs to be investigated thoroughly.

Can anyone provide words of wisdom and recommendations for assisting with diagnosis?

The lovely lady from the PA society, whose name I have frustratingly already forgotten, mentioned a consultant called Dr K from Nuffield hospital in Cambridge who specialises in anaemia.

Has anyone had assistance from the Nuffield hospital in Cambridge and their specialist in Anaemia and what did this look like?

Thanks in advance!

Note: edited by admin to remove name of medical professional

[MartynLewis]

I visited the Nuffield hospital in Cambridge after over a year of severe symptoms and my experience was excellent. They will certainly help you.

[Gambit62 Administrator]

Beccy_123 Please note that it is against HU policy to provide recommendations on Medical practitioners. I have edited posts and responses to remove the name of the particular medical professional.

[MartynLewis in reply to Gambit62]

My above comment was a copy paste from another post a month ago which has not been edited .. and you may which to - along with the rest of the post it relates to .

[Gambit62 Administrator in reply to MartynLewis]

Thank you MartynLewis - have edited the post

[Beccy_123 in reply to Gambit62]

Thanks for this, I wasn't consciously aware, but then I have brain fog 🤪

[Beccy_123]

Thanks Martyn, I have another GP telephone appt this aft and depending on their response, I'll get in touch with Nuffield hospital 🤞

[Nackapan in reply to Beccy_123]

In earlier tines before supplements was your b12 low?

Also were you ever given the IFAB trst?

Hope your appointment goes well.

I also had covid in June which gave the return of many symotoms . Took extra b12 injections to get back on track.

Hoping your bloods a blio in recovery from covid

[Beccy_123]

Hi, I never had a serum B12 test before supplementing with B12 and folate, which is unfortunate. I never knew about or was offered the MMA test, homosysteine or pareital antibody test. So I will enquire about these today.

I am going to suggest investigating for PA, SIBO, EPI and enquire about why my RBCs and WBCs are reducing (bone marrow? spleen?).

I am also going to ensure they realise the extent of my problem and try and provide the bigger picture. When you learn, adapt and become your own advocate over the decades, you dont realise yourself just how much impact chronic ill health has on your personal and professional life. I probably have 'down played' my symptoms because Im so used to them and they haven't been so bad that I ended up in A and E - yet! So I will summarise - again- to another GP - (there simply isnt any continuity) - how many vitamin, mineral, probiotic, prebiotic, digestive enzyme, herbal and other supplements I take to function at the level I am currently at, and what foods and food combinations I have learned to eat over the years.

Any other advice before my telephone consult with a new GP today? 🙏🙏🙏

[Beccy_123]

Well, I had an interesting chat to an on-call GP who insisted I already had intrinsic factor and pareital anti-body tests done which were negative but these aren't in my NHS record according to my NHS and patient access account (?) so I will call the practice tomorrow for more info on this...

He didnt believe I had PA but could not provide any info on what might be causing the symptoms I have and recommended a face to face appointment with a GP. So basically I will be saying the same things I have said over and over for 20 years.

Moving on, I had chat with Dr K from Nuffield, Cambridge today and he thought my bloods were suspicious of PA but not strikingly so, but symptoms and history were highly suspicious of PA. I have chosen not to fight with my GP any longer, or to come off B12 supplementation for active B12 tests in the future, and have decided to try a trial period of B12 injections and will have a face to face appointment with Dr K who is available this Friday. He will do the first B12 injections and will repeat every other day for a trial period of 3 months, he will provide a prescription for initial B12 jabs, take PA bloods tests (Instrisic factor, etc) and write a letter to my GP with the findings and course of action.

Maybe the B12 won't help, maybe it is something else, but I am 100% happy to give it a try and ultimately find out more than what I currently know.

For the first time in my entire adult life, I felt like someone is taking my symptoms seriously and not being dismissive.

We need more like Dr K in the NHS.

I will update with my bloods and personal experience along the way.

Big thank you to all here who provide support and help to folk in need like me. Namaste ya'll!

[Hidden in reply to Beccy_123]

have you tried Manuka Honey, a tea spoon of honey in warm water, settles bloated tummy and is very good in the healing process. Try googling and see the benefits

Am glad you have appointment, I would try and eat a banana in the morning.

[Beccy_123 in reply to Hidden]

Thank Sally, yes, raw organic honey is a part of my daily diet. Manuka is the same for me as regular raw hiney. I also drink celery juice daily, and bananas are a staple! I sometimes wake up at eat 1-2 bananas in the night lol! I have them with breakfast too... I also drink an ayurvedic tea with ginger, lemon, and seed of fennel, cumin and coriander. I eat learned many tricks over the years but GI issues still plague me. I switched to plant based after learning all animal products were a problem. I couldnt eat apples and many other food until 5 years ago, switched to plant based and many intolerances left me including asthma. I have been gluten and corn free for more than 2 decades but if I accidently eat it if on the road or on hols, its okay now. I also take probiotics and digestive enzymes with every meal.

[Hedgeree]

Hi Beccy_123,

Have you considered getting thyroid and antibody tests done?

With you saying you're experiencing fatigue, brain fog, listlessness, heartburn and bloating. These can often be associated with thyroid problems. There is also often an overlap with anaemia symptoms.

Did your doctor include them on your last tests? If not it may be an idea to ask them to do them for you.

Best wishes.

[Beccy_123]

Hi, yes thyroid test apparently okay. I just discovered I had the antibody tests done after requesting a print off of my latest blood tests. Instrinsic factor ab and pareital ab both normal.

[Hedgeree in reply to Beccy_123]

Hi Beccy_123,

It would be a good idea to get the results of your thyroid tests and their ranges. Often a gp will tell you all is ok when the reality is very different. You can be very symptomatic but still be within range and the gp will tell you that all is ok. Many over on the thyroid forum here on HealthUnlocked have experienced this.

If you have a look on the Thyroid Forum it is always recommended that you get TSH, FT4 and FT3 done (though gp's rarely do the FT3 one) and thyroid antibodies which are not the same as Intrinsic factor or parietal ab. You can have a read about symptoms of thyroid problems and some of the posts. Like the PA forum the thyroid forum also has some very knowledgeable members.

Best wishes.

[Hidden]

have you had a SEHCAT test for bile acid / salt malabsorption? I am in a similar situation to you and after 30 years of "IBS" have finally found a consultant Mr S at Springfield hospital who agreed, after a private appointment, to take me on his NHS list at Broomfield, Chelmsford and do all the tests previous gastros had refused to do. I'm having the SEHCAT next Monday. A recent b12 test indicated I haven't absorbed any b12 from my diet as it showed that 2.5 years after 12 months of injections i had lost over 90% of my b12 reserves. Google showed that there is very likely to be a b12 absorption problem if you have a bile acid problem. I've had 2 IFAB tests, both negative, which I know doesn't reliably rule out PA, but I feel its my gut issues that are causing the problem, they are pretty horrendous!

[Beccy_123]

Yes! I always feel my GI is the root cause, and have had IBS symptoms since teenager (Im 46 now). I have taken digestive enzymes and tried to support my gut for 2 decades now and docs don't take me seriously, probably because I don't shout loud enough or haven't collapsed! I feel I dont absorb and digest properly. Anaemia consultant I visited on Friday advised my B12 deficiency is functional but he thinks the cause of this is a functional gastric issue and to see what my symptoms are after 3 months of B12 injections. But who do I see? Can I get the help I need on the NHS? I'm thinking of going back to a private functional GP in Leeds who helped me 6 years ago. Her practice has grown and she now has 6 functional docs on her team inc. nutritional experts and I can get tests done there. She helped me get some tests at my GP 6 years ago but I gave up after nothing was conclusive and treated myself with some success, until 2 bouts of COVID brought me back to square 1 this summer.... My B12 levels 6 years ago were high as I was supplementing for this and nothing was diagnosed...

[Hidden in reply to Beccy_123]

I have had stomach problems since birth, constipated breast fed baby, constipated all through childhood, stomach ache all the time, I ate hardly anything as it hurt so much. I had glandular fever very severe case at 18 years old and from then on had chronic diarrhoea, exhausted all the time etc. It took until I was 43 to get a referral to a rheumatologist who very quickly diagnosed me with ankylosing spondylitis. It was so active she was amazed I was functioning at all really -- yet for 25 years I'd been told it was all in my head! I was then finally investigated for IBD (clear) as there is a known higher incidence of IBD in AS patients. When my tests were clear i was again left to cope on my own.

In the end I scraped the money together to see a gastro privately because I have no quality of life. I've got anxiety due to the diarrhoea, I'm exhausted, I can't work, I can't go out. He is great and is going to run every test possible until he gets to the cause of my symptoms.

I'm on the PA board as I take immune suppressing drugs for the AS and my blood tests are showing that my neutrophils are getting very low. My rheumatologist said if they get much lower I will have to stop my medication which I really don't want to do. I researched ways to increase my neutrophils and B12 came up. My GP agreed to test my B12 and it's low end "normal" at 189. I'm supplementing at 150mcg a day (I think far too low but that was what GP said) and will test my b12 again after 6 weeks. If there's no or little improvement it has been agreed I can have injections (but we'll see how that pans out!) I think the surgery are being more helpful as my immune suppressing drugs may be taken away and they don't really understand all that - it's like there is something bigger going on and they don't want to step on any specialist's toes! Which is good for me