Peri/ferritin/IBS/B12/anxiety...where to start?

[wejammin]

I'm so confused!

I turned 40 in October. A few months prior I was having some dizzy spells and a tingling feeling in my face. This progressed to include heart palpitations and nausea. I felt really unwell. Periods very heavy with huge clots (up to 10 cm). Wondered whether this was perimenopause or something else.

Went to GP and they did some bloods and I did a 24hr ECG. Bloods showed low ferritin (12) but everything else fine. Internal ultrasound showed 'bulky uterus' but nothing sinister.

Just before I started taking iron tablets, I had an episode of severe nausea and dizziness that triggered a panic attack whilst I was driving on the motorway. Thought I was dying and called an ambulance. I'm mortified looking back at this (ambulance guys were amazing but must have thought I was an idiot).

Started on high strength iron tablets in September. This seemed ok at first but then set off months of IBS, diarrhoea and vomiting even after I stopped taking them.

GP has put me on propanolol to deal with the anxiety that has remained since the original panic attack. She dismissed HRT as an option but has prescribed Yasmin to 'level out my hormones' - I haven't taken it yet as unconvinced (admittedly based on googling). I'm waiting for a coeliac test to see if that is the cause of the tingling and diarrhea.

I seemed to really turn a corner after Christmas and felt almost back to normal, but suddenly the tingling is back with a vengeance, I'm dizzy and exhausted. My shoulder hurts, I've got neck pain at the back of my skull sometimes really severe, I've developed jaw pain and started grinding my teeth at night giving me headaches. My skull feels 'tight' all the time over my cheekbones.

I don't know whether to try a different type of iron but I can't do another round of months of IBS, when I've looked at my symptoms it could be B12 deficiencies (my bloods were ok but I was actively supplementing at the time which I understand can cause issues with testing. I've cut out alcohol, caffeine and sugar. I'm scared of taking a load of supplements incase they make things worse. GP seems unconcerned generally.

Don't really know what I'm asking but I'm so fed up and if anyone has any wisdom I would so appreciate it.

Whats your haemoglobin level?
Have you tried puashing your GP for an iron infusion? It sounds like you can't tolerate tablets.
If the GP refuses, could you afford to go private? It's usually around £700.

Haemoglobin was 122 (within range), haematocrit 0.369 (just below cut off).

The GP didn't even prescribe the iron tablets, she just said ferritin was a bit low, so I can't imagine she'd go for an infusion but I can ask. In theory I could afford to pay for an infusion in a couple of months, if that is the heart of the issue. We get a new healthcare package with work in April so I'm hoping I could go private through insurance then and get some more tests done.

Im so sorry you are experiencing all this, I have experienced similar in recent times. Have you tried floradix the liquid iron? It might be easier on your tummy?
Have you considered going for a private menopause appointment to try hrt? Or the coil?

Ferritin should be 70 to 100 for healthy hair growth so 12 is pretty low.

Did you take it with Vitamin C (or fresh orange juice), with no tea, coffee, chocolate or cola 2 hours either side? Recent advice is to take the iron every second day instead of every day. And finally try a gentler iron. Florodix or Solgar gentle iron might be a good place to start.

What was your B12 and Folate?

EDIT - Periods very heavy with huge clots (up to 10 cm).
Get some Tranexamic acid off your GP to help with the bleeding. Low iron can cause heavy periods which cause... low iron.

You could also look into possible b vitamin overdosing - fits a lot of your symptoms and a lot of insufficiently regulated supplements have way more b6 than we are supposed to consume.

Saw the phrase bulky uterus mentioned - I had that in my notes for a long long while before it came to light that it was adenomyosis (to go with my endometriosis) in case that is something you also need to explore further.

I've got some liquid iron to try. Just a bit nervous after the last debacle!
I am considering private menopause clinic, but I can't afford that and a private iron infusion and I don't know which would be more helpful. If I went to a meno specialist and they didn't think it was peri, are they likely to say so and refer me elsewhere?

I took high dose bisglycinate every other day with vit C tablets. No caffeine at all. The vomiting was awful - I think the vitamin C burned my throat on the way out!

B12 was in the 700s, but I was taking it sublingually at the time so I don't know if it was accurate. Folate was 10 (normal).

I'll ask about the tranexamic acid. When I was taking the iron my period was much lighter, so that does track.

Thanks, never heard of this so I'll have a look.

Thanks, I'll add it to the list! Sorry it took a long time for you to get answers.

Hey there,
if you have an hour to spare I can recommend this podcast on YouTube, WOMEN & GIRLS NEED ANIMAL FAT with Dr. Elizabeth Bright, with Dr Ken Berry.

Best of luck.

OK, your iron level is very low, you need ferrous fumarate, at least 225mg every other day. Floradix is great if you're not symptomatic to keep things topped up, but it only provides 14mg per day with isn't going to make much of a dent in your problem.

If you don't already have the NHS app, download it - you'll be able to check whether your coeliac screen has come back positive, as your symptoms are all classic signs. If the result is borderline, ask for a referral to gastroenterology for a biopsy, which is the gold standard test. Your serum tTG-IgA can be negative, and you still have coeliac disease.

Finally, if it's peri-menopause that's making you feel like this, the Pill should help a bit, as it's usually the first line of HRT anyway.

Thank you for your suggestion. I've had a quick look - I can see it's about the carnivore diet and I'm vegetarian so that's probably not for me, but I appreciate you trying to help 😊.

I have overhauled my diet to high fibre, low fodmap, no UPF and also introduced mussels for their iron.

Thanks, is ferrous fumarate gentle on the stomach? I got the bisglycinate as a recommendation to not trigger stomach symptoms and I was having diarrhea and stomach cramps every hour for weeks, I had to take time off work it was that bad.

I've got the NHS app but my GP surgery gave me the wrong code 🙈 so I can't see anything on there - I'll chase that up.

The pill - I think I just feel overwhelmed by the possible reasons for the symptoms and the GP said it would take 3 months to see any improvement, and if I'm also trying iron again and potentially coeliac how do I distinguish what is what if I'm also testing the pill.

I had similar symptoms last year and also had a low ferritin and low b12. GP wouldn’t prescribe iron as Hb was normal 🙄. I’ve been taking iron from Holland and Barret every other day and my ferritin is rising.

My GP felt it was hormones causing ny issues and increased my HRT dose. I think it was a combination of everything to be honest.

so I have no advice but hope you get sorted

hope you get some help OP. just to say tranexamic acid was a game changer for me and it was quite upsetting that it took until my 40,s for a female GP to recommend it to me !!

I've just read that pharmacists can provide liquid ferrous fumerate high strength so I might go into the chemist later and see if he's got any and see if I can tolerate it.
Just need to get through the day with 3 feral kids on half term to entertain 😅.

https://www.youtube.com/live/x4XlD4QrqIM?si=l3tmPMffoNjypwNx

This YouTube Dr Kane interview with Prof Richards about iron deficiency may be helpful.

Also Dr Klein website on iron, B12, folate
https://cambridgeironandb12.com/

The wake up B12 Facebook group too.
There's cofactors that are needed for it all to work and be absorbed.

Being a vegetarian makes it more likely to be B12 deficient.

Thank you, I'll have a look later ☺️

I went for a private menopause appointment with bupa and it was great - so much more time than standard doc appointment and she went through all symptoms and lifestyle etc and said that it could be Perimenopause symptoms but before starting on hrt she would want to rule out other factors. So she referred me back to gp for iron, b12, thyroid etc tests and lo and behold my ferritin came back as 11. GP didn't even flag this as abnormal but I think it's probably the root of most of my problems so I've been and had a private iron transfusion from Dr Klein. It was only 10 days ago and I've had some of the classis flu-like side effects but I'm hoping I will feel a lot better in another couple of weeks! The menopause doc also recommended getting a mirena coil to help with the heavy periods, which should help maintain my iron and can also form the progesterone part of hrt should I end up going down that route in the future. I'm 44 BTW.

Thanks @bluebunnyblue. I've felt so rubbish today I've had to work from home, I had diarrhea all morning and so nauseous. I used the GP form to request an urgent appointment - 12th March.
There's a private GP nearish to me who can do a 30 mins generic appointment for £85. I could go on Friday. She's a women's health specialist. The question is whether it's worth it when I'm waiting for the coeliac test or whether I should wait 3 weeks for the coeliac test and GP appointment and then go private if that still doesn't get to the bottom of anything.

I'd wait for the coeliac test result and then try the private GP after that if it's negative and you're not getting any helpful suggestions from normal GP. No point wasting £85 if it turns out gluten is your problem. Hope you feel better today though!

Went with your suggestion @bluebunnyblue and will wait for the coeliac test. I had a great day yesterday, went into the office no issue and managed to do a load of housework and play with the kids in the evening, but couldn't sleep and this morning I've got pins and needles in both hands and feet and my cheeks, a headache, and diarrhea every hour or so. Also ovulation pain which is right for my cycle but just adds to the list of things to be irritated by!

Update -
Got coeliac results today, negative. Which is great obviously but also means still no idea what's going on.
I'm feeling a lot better on liquid iron but I'm now very constipated a lot, interspersed with occasional diarrhea.
Still frequent headaches, mild dizziness and occasional nausea. Sleep still rubbish.

Maybe make a note of symptoms as your cycle goes along and see if there is a pattern? Have you considered HRT?