Please help me understand this!

[ModyGirl]

I've posted recently about some awful symptoms I've been experiencing which seem like they could be diabetic complications.

They include;
Burning feet
Sunburn type patches on legs and back
Tingling sensations even around my eye
Pins and needles
Nausea (hate this so much! I have the Libre 2 and my blood sugar does seem to rise and fall after eating so I hopefully think that means I am digesting food)
Restless legs (new onset)
Fatigue
Light sensitivity
Mix of looser stools/constipation
Muscle aches
Tachycardia/POTs symptoms
Temperature dysregulation
New onset of allodynia - cold water hurt my legs earlier!

I am at my wits end. Been diagnosed for 7 years. The highest my Hba1c has ever been is 56. Was 54 at diagnosis and all my others have been in the 30s and 40s with my most recent being 49.

The endocrinologist doesn't think these symptoms are from diabetes and even looked at my Libre graph which showed my blood sugars to be between 4 and 10 for 89% of the time. I know this could be better but I don't think it's THAT bad.

I am clearly showing almost every symptom of small fiber neuropathy and autonomic neuropathy.

I've had a slew of tests including thyroid, B12 etc - all come back normal. Only thing that is always low is iron which is currently 6 with a ferritin of 11.

Does anybody have any ideas? All this is so scary!

 

[HSSS]

I've had a slew of tests including thyroid, B12 etc - all come back normal. Only thing that is always low is iron which is currently 6 with a ferritin of 11.

Define normal?

Within the appalling nhs reference ranges does not mean it’s optimal or symptom less. Eg b12 is classed as normal about around 160 but it’s widely accepted anything under 600 causes symptoms and issues in some people (Japan treat anyone under 500). Same issue with thyroid ranges.

ferratin of 11 is absolute iron deficiency (anything under 30) regardless of haemoglobin or anemia. (Even NICE says so) yet “normal” kicks in around 11 or 13 ish. Optimal is closer to 100. Some people are highly symptomatic at that level. I’m battling to get treatment right now as so many drs will ignore anyone who’s not actually anemic. There’s a few nhs clinics around that take it seriously. Serum iron does vary like glucose does. There are other tests that can demonstrate iron deficiency too.
https://www.oatext.com/iron-deficiency-without-anemia-common-important-neglected.php https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5986027/

Iron deficiency without anaemia: a diagnosis that matters

Iron deficiency anaemia (IDA) currently affects 1.2 billion people and iron deficiency without anaemia (IDWA) is at least twice as common. IDWA is poorly recognised by clinicians despite its high prevalence, probably because of suboptimal screening recommendations. Diagnosing IDWA relies on a...

www.rcpjournals.org

Iron deficiency and anaemia | Publications | Royal College of Nursing

Guidance for dealing with iron deficiency anaemia.

www.rcn.org.uk

https://nssg-test.oxford-haematology.org.uk/documents/15/how-to-refer-to-the-iron-deficiency-management-service-info-for-gps_L95xP4v.pdf

 

[ModyGirl]

Thank you so much for this @HSSS! That first link listing all the iron deficiency symptoms was so interesting! I had no idea that nausea could be from iron deficiency. My transferrin saturation is also 6.5% and has never been above 20 like it should.

I was referred for an iron infusion yesterday so I am keeping my fingers crossed. My thyroid levels are always 1 point something. My B12 is always in the 300s or 400s without supplements.

 

[HSSS]

Thank you so much for this @HSSS! That first link listing all the iron deficiency symptoms was so interesting! I had no idea that nausea could be from iron deficiency. My transferrin saturation is also 6.5% and has never been above 20 like it should.

I was referred for an iron infusion yesterday so I am keeping my fingers crossed. My thyroid levels are always 1 point something. My B12 is always in the 300s or 400s without supplements.

How did you get the referral. (Uk I’m assuming). I can’t get one for love nor money.

you might find as iron goes up you utilise and need more b12. There’s other vitamins that are utilised alongside these including magnesium, folate and vit d. Do some digging

 

[ModyGirl]

@HSSS yes I'm in the UK, are you? I've been on and off supplements for 3.5 years since having my second child so I've given them a good go. I know my area will offer infusions if iron is as low as 8. Mine is 6 at the moment so I was able to be referred. Still waiting for a call though! I hope you are able to get one too.

 

[HSSS]

@HSSS yes I'm in the UK, are you? I've been on and off supplements for 3.5 years since having my second child so I've given them a good go. I know my area will offer infusions if iron is as low as 8. Mine is 6 at the moment so I was able to be referred. Still waiting for a call though! I hope you are able to get one too.

Nope I’ve been trying all sorts of supplements and diet since way before 2015 when the gastroenterologist refused to infuse me and has done again this month. I can’t take any of the tablets they are able to prescribe due to side effects. Single figure ferritin all that time, feeling rubbish with symptoms too. Would you mind letting me know what health area you are in (by message if you prefer) so I can investigate a referral there maybe