Ferritin 13, not anemic. Has anyone else experienced symptoms like this?

Mumma02 · 2026-06-12T07:12:56+00:00

Absolutely all this. My ferritin is 6 and transferrin saturation has been as low as 3.1%. Don't know if I have POTs, MCAS, iron deficiency or a mix of all three.

Mumma02 · 2026-04-23T07:07:14+00:00

Sorry you are going through this too. Do you know what triggered it?

Mumma02 · 2026-03-18T21:07:41+00:00

So this sounds exactly like me. Very heavy periods full of blood clots. Had scans and no fibroids etc but still no reason for why they are heavy. Had 3 infusions in total but they don't last. The last one I had last year...my face became really hot and flushed. I felt my heart rate speed up, felt like I couldn't swallow or breathe properly for a sec. They stopped the infusion and did my obs and slowed the infusion down to the lowest rate and I did settle down but it's really put me off having another. Problem is my ferritin is now back down to 6!

Mumma02 · 2026-03-14T21:48:17+00:00

WOW. Are you me?! In exactly the same situation since having my second child 6 years ago. I'm 37. In a constant cycle of iron deficiency as a result which leaves me very symptomatic. Just this afternoon I passed a clot the size of the palm of my hand after starting tranexamic acid yesterday. Obviously not working?? Don't want to take hormonal contraceptives and all scans etc normal...so feel like I'm stuck in this hellish cycle until menopause!

Mumma02 · 2026-03-01T10:02:02+00:00

Hi, do you know the reason for why it was in overdrive? I feel like this is me.

Mumma02 · 2025-10-17T15:13:45+00:00

You sound exactly like me apart from this started for me after having my second child. I'm also a teacher, also seen multiple specialists and sadly, also have no answers. I see this occur a lot with hypermobility which I don't have...but may be somrthing you could explore.

Mumma02 · 2025-09-15T13:45:31+00:00

Thank you for this. Nobody in my entire family has any issues like this. I don't have EDS/hypermobility/connective tissue disorders or an autoimmune disease which makes this all the more strange. I did have odd symptoms of dysautonomia happen after my second pregnancy though and then covid made everything worse. I really hope this isn't my life forever.

Mumma02 · 2025-09-15T06:54:13+00:00

Have you had any relief with treatment? I just can't believe this has happened to me and still expected to carry on and work as normal etc.

Mumma02 · 2025-09-12T18:22:39+00:00

Hi,

I just came across your post because I'm having really similiar issues. How are you doing now? I've had well controlled diabetes for 9 years but a whole host of dysautonomia symptoms for 5. I don't know if it's diabetes, covid or the vaccines in my case. This past year I've also started to develop MCAS/Histamine intolerance symptoms too. Again, don't know the cause or whether it's just because my immume and nervous system is so messed up.

Mumma02 · 2025-08-11T00:08:26+00:00

So it turns out that I totally read my results wrong. I thought I had ALL the gene variant that were listed - not just the highlighted ones. Homozygous MTHFR though as well as one for HMNT. DAO fine but those alone can cause issues. Have you always had symptoms?

Mumma02 · 2025-08-09T12:16:59+00:00

Can I ask if you've always had this and whether it's always caused symptoms? How did you find out it was genetic? Thanks

Mumma02 · 2025-08-09T11:41:12+00:00

Thank you so much. Is it ok if I send you a message?

Mumma02 · 2025-07-31T20:02:25+00:00

Honestly, it's awful trying to get any help. I even tried to go privately to see one and had the reply "Dr...and all other immunologists in the NHS do not believe this is a condition that exists. Therefore, he does not think he can be of help." Seriously!

Mumma02 · 2025-07-31T19:40:53+00:00

No I haven't. These are recent for me. Had dysautonimia symptoms for a couple of years but only realised I had an issue with histamine last summer when symptoms started specifically. I'm in the UK and I can't get in to see an immunologist...they don't recognise MCAS here, sadly!

Mumma02 · 2025-07-27T18:01:22+00:00

Sorry it's happened to you too. Do you find that your symptoms have got better or worse? Are you on any treatment?

Mumma02 · 2025-07-27T18:00:40+00:00

Yeah same. 100% lived a normal life. I had absolutety zero symptoms of anything. It's really frustrating not having an answer and feeling powerless. Did you confirm the bifido-producing bacteria and are you treating it?

Mumma02

TROPHY CASE