Why am I always so cold?

[BorntoDillyDally]

I am 52 and neck deep in perimenopause so in theory I should be having hot sweats all the time but these only occur very occasionally and even then it's usually only during summer heatwaves, the remainder of the year I am constantly cold.

I have always been this way but have no idea why. I do have some health issues but not sure they are related or connected to feeling cold. I have suffered with IBS, functional dyspepsia and a general poor digestive system for 3 decades. I have recently discovered that I have endometriosis after suffering from awful periods and decades of anaemia. The anaemia was fixed by iron infusions and a uterine ablation.

I have also recently been diagnosed with ADHD, I am sure that has no significance to my feeling cold but thought I would throw that in just to give a full picture of my health.

Other regular symptoms that I have are feeling tired all the time, post nasal drip and constantly clearing my throat (GP says this is probably due to my functional dyspepsia), aching joints, tinnitus, tingling finger tips at times (and weirdly my lips at times too). I often feel really weak and shaky as though my energy levels have suddenly drained away and a general feeling of malaise.

I have been to the GP so many times regarding all of my issues but they say nothing is wrong and all bloods are 'normal' (that included full blood panel, B12, Vit D, Thyroid etc).

I carry a hot water bottle with me all the time, not only to comfort my IBS and endo belly but to warm me up. It's sunny today and both my dh and dd say they are lovely and warm but my hands are like blocks of ice and I feel cold all over (just warmed myself up with another hot water bottle).

Are there any health issues that I have not thought of which could cause me to feel cold so much of the time.

There must be some cause to feeling like this. Have you struggled with these symptoms for years too?

I joined a few B12 deficiency FB groups. Apparently B12 can appear raised if folate is low, do you know your folate levels? Mine are 5 but there are no ranges on my NHS page so I am not sure if this is low or not?

I have mild Raynauds too. My mum has it and so too did my grandad.

Yes, probably 20 or 30 years. The only conclusion they've reached is Fibromyalgia, but there are things that don't fit.

I don't know my folate levels but I'm due for re-testing of a few things soon, so I might mention it to the GP.

My DC hardly ever has allergic skin reactions either - other than during and just after the most recently hospital admission, when even water caused a rash.

It's taken almost 5 years to get to the bottom of it. The initial diagnosis was a CSF leak which was treated, plus long term medication. There's was only ever occasional intermittent improvement. A sudden worsening of symptoms resulted in a stay in hospital, with no new diagnosis or treatment.

At the end of their tether, they had a private consultation with a different Neurology consultant, who said at that first appointment likely MCAS with POTS-like symptoms (heart rate racing when standing, blood pressure dropping). DC was told symptoms leading to hospital admission were due to multi system dysautonomia caused by MCAS.

Now under an MCAS expert and is sooo much better. And warm! Wishing you lots of luck with getting a diagnosis and treatment, it must be miserable for you.

As suggested above sounds like dysautonomia symptoms which can be linked with ADHD. Are you hypermobile?

Have you had your magnesium blood levels tested? Your thyroid hormone levels? Your calcium and parathyroid hormone blood levels tested?

I'd never heard of this. I get allergic reactions all the time, for no obvious reasons. Tingling lips, tongue swelling slightly, itchy lumps on my torso... I've eliminated so many foods from my diet over time, it's ridiculous. They know I have low blood pressure and rapid heart rate, as well as cognitive symptoms, but MCAS has never been mentioned.

I think for me, part of the problem is that my symptoms have been present for so long, that I am no longer taken seriously. This is despite them knowing it is not psychosomatic because of the anomalies in some of my test results.

Edited for typo.

I am hyper mobile. I've been mentioning that to GPs for years but none take me seriously. One said everyone is a little hyper mobile. None of my friends are as flexible as I am, they can't bend joints and limbs in the way I can and do though.

I believe my calcium levels are ok but I've never had my magnesium checked. I've tried taking magnesium but it exacerbated my gut issues

It's definitely worth looking into.

What an odd comment from GP. Hypermobility is measurable on the Beighton scale. Could it be hypermobile EDS?

According to online tests I score approx 7/8 on the Beighton score and that was the comment I received from the GP after I mentioned this to them. I have never been able to get any NHS medical professional to take that seriously.

I believe that my mother has suffered from it too (now 82 with a myriad of health issues and years of pain). My son was born with hip dysplasia (I was born with double hip dysplasia), he has experienced knee subluxation since he was at primary school (now 19) but even he can't get anyone to take that seriously.

Sounds quite similar to ME/chronic fatigue. You become quite cold and heat intolerant (and hyper mobility and ADHD are comorbidities of it).

definitely get your thyroid checked properly if it hasn’t been

I will do BrezzyBlock, thank you.

I am also hyper mobile and only found out when I paid to see a rheumatologist about 10 years ago because I was so fed up of my incredibly painful joints and she was absolutely horrified no one had ever pointed this out to me (I’m not obviously double jointed but my large joints are hyper mobile not my small ones). I had steroid injections in one of my hips and specialist physio that really helped. But if I hadn’t paid for that, I would have been none the wiser!

your poor mother (and son and you!) with all that pain

Tbh, I'm not surprised it took so long. It seems to take an age to get chronic health issues diagnosed in this country and even longer if you are female.

It was decades before I got my endometriosis diagnosis and I have just been diagnosed with ADHD at the age of 52.

My GP has referred me to rheumatology for some of your symptoms and are looking into possible autoimmune conditions.

That's interesting, have they suggested which autoimmune issues they may be looking for?

We discussed schleroderma as my cold is primarily linked to hands and feet, but I think schleroderma is a range of autoimmune conditions.