Possible B12 and Iron issues - GP not interested at all, what should I do?

[MoonDanceCafe]

I've had a long history with some chronic health issues which are ongoing and slowly getting worse.

Decades of period issues and digestive problems amongst many other issues.

Over ten years of visiting by gynaecologist and many hysteroscopies/polyp removals etc and being told it's all standard issues and some women naturally have heavy periods only to discover at the age of 50 it's endometriosis.

Over 10 years struggling with anaemia. GP would prescribe iron tablets, I'd suffer with more gut issues due to the iron supplements and GP would shrug and say little they can offer as alternatives. Discovered a year back when I signed up for Patient Access that my ferritin was below 5 for almost 8 years and they did little to help. I opted for a uterine ablation with my gynae, that was in 2022, during the pre-assessment they discovered the low iron and ferritin and arranged an iron infusion. That pushed my levels up to 'within NHS range'.

Even though my iron is now within range I still feel like crap. Daily gut issues (I've had colonoscopies, gastroscopes, stool a d blood tests and all ok) and nothing I try helps with these, I am exhausted all the time, sore tongue, hair loss, blurry vision, headaches, tinnitus which drives me insane etc. I never feel well, always below par.

Today, in desperation I went to my GP, with trepidations as she never appears interested in my woes. I explained my ongoing symptoms and showed her the pics (below) of my tongue and my thinning hair, she barely looked at them, told me all my recent bloods are ok and within range so nothing more she can suggest.

I have asked on some FB groups and it's been suggested that I may possibly have issues with my B12 and possibly still be low on iron. A NHS anaesthetist who has an interest in B12 issues was recommended several times. I contacted him with my latest bloods and he believes I could have issues and has advised some advanced blood tests. I asked the GP but she said I couldn't get these on the NHS and would need to pay privately. Once I mentioned I'd contacted this guy she lost all interest.

I'm so depressed, I have zero money atm as I gave up work last year to help care for my mum who has advanced Alzheimer's, carers allowance is a pittance and doesn't allow for such 'luxuries' as private testing.

What can I do - am I barking up the wrong tree? I'd stick it on my credit card (which I can't really afford to do) if I thought it would give me some quality of life back but I'm so afraid of being taken for a ride.

Has anyone had experience with B12 deficiency, what would you do if you were me?

I've had an issue for four years now - definitely not Geographical Tongue (or various other 'typical' GP suggestions.

After various blood tests, I was found to have to iron/ferritin levels so low they had affected my Red Blood Cells (within weeks of taking prescribed 200mg iron tablets twice daily, my iron was the highest it had been all my adult life (27 😅), and my RBC's were back to perfectly mid-range levels).

My iron levels had always been at the very bottom end of normal range, since adolescence (since starting periods I presume).

Diagnosed with Iron Deficiency Anemia - which suddenly seemed to tick the box for the sore tongue symptom.
However, the sore tongue remains, despite all other symptoms having gone.

Burning Mouth Syndrome (BMS) appears another possible reason for the tongue issue, though I have no other perimenopausal symptoms as yet (I am now of the age where that's in the horizon).

It's horrible when you never quite get to the bottom of a health concern 😌

Not to doubt you OP, but the same picture of the thinning hair was used on a thread called "Does my hair look fake?" by @LighteningBug - just confusing really?

Unless you're LB and I've accidentally outed your name change, in which case sorry.

B12 is really low. You definitely need treatment for it! NHS range la are so low, in the US they treat anything below 600.

Yes, the thread about the topper was started by me. I wear toppers to hide my thinning hair. The topper in that photo is a cheaper one than I normally wear and I'm concerned it looks fake and was asking for honesty opinions on the topper.

Wearing a topper does not eradicate my health issues, my hair is still thin under the topper and I'm concerned (along with my other symptoms) as to why this is happening to me.

I used a different user name just incase someone, somehow knew it was me in RL, I'm extremely sensitive about my hair loss.

Sorry but I'm not sure how that is confusing to you?

Just wondered why two different threads under two different user names used the same picture, is all! People have stolen photos before.

See my edited reply.

Very few people in my RL know I wear toppers. All of those photos are 100% mine and are of me.

Thank you, I have often wondered if it was related to my iron issues. Thinking back I probably experienced it a lot more when my ferritin was at 3 so hopefully connected to that.

Thank you, I'll take a look.

That is quite extreme hair loss to be explained by peri-menopause, vitamin b (when your bloods look ok) etc. Did you think maybe of asking the GP for minoxidil which someone else mentioned upthread, but prescription strength. You can get it in tablet form, it does interfere with blood pressure, so that would be a consideration. I also wouldn't touch it with hair dye or bleach for at least a year if you use it (though I know that is not ideal if your topper matches the dye); give it a chance to grow. I know this does not solve underlying issues, but hair loss to this level is horrible, I really feel for you.

I have read other parts of Europe state that any level under 500 is classified as low. It feels very confusing.

I have tried many topical things over the years and lots of supplements for hair growth but am reluctant to take anything orally due to my super sensitive digestive system, many medications upset me.

Tbh, the hair loss bothers me greatly not so much these days because of the look of it but more because I am convinced it is connected to my other health issues which I am desperate to control or ideally eradicate. I have worn hair toppers for years now so that helps with my confidence but mostly I just long to feel better.

If I could find out just what is causing my health issues and the treatment for that resulted in hair growth that would be great but feeling better is my priority right now.

You know, I nearly mentioned the submucosal route but decided not to because-

1. it’s VERY expensive
2. it’s unregulated so you can’t know how much dose you are getting (not a regulated pharmaceutical)
3. it’s often confused with oral route (ie swallowing tablets) which will be ineffective in those cases
4. it can cause gi side effects
5. positive intrinsic factor antibodies can be a marker for other medical issues that need investigating and it can mask the issue so you won’t get diagnosed
6. it is confusing for many people

I'm not interested in a fight club. Ask your doctor, read proper studies, make your own decisions.

But don't look up your facts on Facebook.

Sounds like a hormonal issue. I’d go to a private endocrinologist. I have chronically low B12 and iron and it turns out I have PCOS and hashimotos. Mine is now under control and I take daily b12 and iron supplements.

Those are good levels, HDL is 'good' cholesterol so anything above 1.2 for women is good and 1.6 is optimal. So 2.12 is fine, they don't worry about them being higher really as its good cholesterol. It's the non-hdl/LDL is 'bad' cholesterol and so you want yo keep that under 3. So your levels at 1.72 are fine.

Non-fasting triglycerides should be below 2.
Overall, combining both you want to keep it under 5.

https://www.bhf.org.uk/informationsupport/risk-factors/high-cholesterol/understanding-your-cholesterol-levels

https://www.heartuk.org.uk/cholesterol/understanding-your-cholesterol-test-results-

Ah, thank you.