Hi, I am new here and wondered if you could help me understand my blood results in the context of ongoing health issues. In brief, last year I suffered a series of UTIs which were painful and debilitating. With reluctance I went on HRT in February (I am a 57 year old woman) and that seemed to stop the infections, although within a couple of weeks I had a massive cold sore and then several weeks later after the start of lockdown came down with what initially appeared to be shingles but which seems to be some form of the herpes virus erupting in different parts of the body. It was extremely painful and I still suffer occasional lesions although my extreme skin sensitivity has gone down. I have intermittently also suffered with episodes of extreme indigestion and heartburn and, unsurprisingly, have suffered badly with anxiety, depression and brain fog. My husband and kids tell me I have been complained of extreme tiredness for years. I am currently exhausted and very low.
I have little confidence in my GP practice which is understaffed and inefficient. I have had no continuity of care, particularly post- covid. I had a number of blood tests which showed an increased ferritin level, which is now within range, but also showed:
I had to telephone for the results and was told I was B12 deficient and would be treated with 2 injections of 1 mg B12 plus a prescription for oral B12 which was cheaper to buy than pay the prescription charge. I was concerned, having read about the NICE guidelines on this forum, that they were not being followed and telephoned the surgery. I have a telephone appointment with my GP on the same day as my second injection to discuss the situation would like to be in a position of knowledge to push for the guidelines to be followed.
My understanding from this forum and the NICE guidelines is that the GP should be discussing the possibility of PA. I do not think the deficiency is due to diet. I am not vegetarian and cook for body building men who like a high meat/protein diet. I have consumed more wine than I should in lockdown, have had nitrofurantoin antibiotics for the UTIs, omeprazole for episodes of severe indigestion (in moderation) which may have reduced my B12 levels but, particularly as I had my gall bladder removed due to gallstones over 20 years ago, I suspect I have an absorption problem and may need injections for life.
I am anticipating a battle over injections. Any ammunition would be greatly appreciated. I have numerous symptoms of PA including numb hands at night, poor balance and tinnitus which are neurological and may justify numerous ongoing injections. I would be prepared to self inject if necessary. I actually have BUPA cover so there is no financial reason for them to refuse treatment or further investigations and, if necessary will order online and inject myself, although I would prefer to stay within the health system if possible. I had my first injection yesterday and have noticed an improvement in both tiredness and mental alertness.
Any comments or suggestions would be very gratefully received. In particular, is there anything in my results that may be used as a reason for not doing further investigations like the IF antibody test, or to suggest I should have fewer injections than the NICE guidelines suggest?
Thank you for your patience in reading this far and for the support of this forum which seems to be a very positive resource 🙏
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Hebe2020
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See the section with neurological involvement. It may be worth printing them out, highlighting, typing out your neurological symptoms with your name, NHS number and ask for the GP to look at them and then for them to be added to your notes.
I notice you had your gall bladder removed some 20 years ago. Talking with my Thyroid UK hat on I am wondering if you have had your thyroid correctly tested - TSH - FT4 - FT3 and antibodies TPO and Tg - to rule out Hashimotos. Gall bladder issues can be linked to low thyroid.
Sometimes low stomach acid can present with similar symptoms as high acid. Low levels are linked to low thyroid.
You are in the best place possible for B12 advice.
I have a B12 issue due to gut surgery and also have Hashimotos 🌻
Checking my bloods there was a Serum TSH test of 1.35 miu/L, within the reference range 0.38 to 5.33 and I was told I didn’t have thyroid problems. Gallstones run in my family. My mum and sister both had gall bladders removed and my other sister has passed gallstones. Strangely, the indigestion pain I have had in my back I have only experienced a few times over the last year and it is comparable to the pain I had from gallstones. I think there may also have been thyroid issues in the family and my grandmother had her parathyroid removed when I was a child - I remember her saying it was like having her throat cut - she had a long fine scar across her neck, bless her.
Thank you for your input. I hope you stay safe and well. 🙏
Am sure you are fine - but the TSH is a Pituitary hormone and tells you very little about your thyroid and the T4 secretions. T4 is a storage hormone and needs to convert into the Active T3 - needed in every cell of your body. Hashimotos is auto-immune and the most common thyroid condition.
You can test privately with Medichecks - test kits sent to your home and results by email. Always good to eliminate things ... 🙃
Lots of information on there and explains far better than I could about IF antibody test, its reliability and when to do it. Plus they have a helpline for members.
Thank you again. I used to be a solicitor so I am good at letters. I wanted to try and resolve it without a formal complaint as I don’t want to get people’s backs up but I already have cause for complaint having suffered for two months with a UTI when they didn’t tell me I had tested positive and they had prescribed antibiotics. I didn’t chase them up for the explanation I was promised because COVID came along but we’re all having to learn to live with the virus now so I may have to put my stroppy pants on!
High MCH and MCV are suggestive of macrocytosis (enlarged red blood cells). Macrocytosis is associated with B12 deficiency and with folate deficiency although possible to have either or both deficiencies without macrocytosis being present.
"My understanding from this forum and the NICE guidelines is that the GP should be discussing the possibility of PA"
Link about "What to do next" if B12 deficiency suspected or newly diagnosed
Lots of B12 info in my replies on the the thread below eg symptoms, causes of B12 deficiency, more B12 books, B12 websites, B12 articles/documents and a few hints about dealing with unhelpful GPs etc.
UK forum members have reported problems getting their B12 jabs during pandemic eg injections have been stopped/delayed/ frequency reduced or swapped for oral tablets.
I left a detailed reply about impact of pandemic on B12 treatment in UK in next link which might be of interest if you're UK based.
Hi, I have only this afternoon been researching macrocytosis as a possible cause of my skin lesions. It ties in with the B12 deficiency, the hay fever and gastric symptoms and the interstitial cystitis I have suffered. I am following this up with my GP as urgently as the system currently allows. Thank you for reinforcing my suspicions 🙏
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