‘Just’ alopecia or is there more to it?

[JacquiDaytona]

Name changed for this.

In July, I lost all my hair over a week. Then brows and lashes and all body hair over the next month. Never had any patches or anything prior to this, so it was a massive shock. I’m 35 and gave birth 10 months prior to this after lots of early losses and 5 rounds of IVF. Diagnosed alopecia universalis.

At the time, I had swollen glands, rashes, night sweats, felt like absolute death. Feel much better now but still have joint pain in hips, knees, big toes, thumbs and wrists and still night sweats and rashes on back and face. My nails are non existent, just crumble off. A few years ago I was a decent marathon runner, never had any illness/physical problems. Pushed and pushed docs for bloods - ANA positive, speckled pattern was mentioned and low component 4, plus anaemia. Everything else normal.

Still no hair has come back and I’m having no treatment for anything.

I can’t live like this - what is wrong with me? How do I get doctors to take me seriously?

You need a referral to a specialist, OP. There will be some treatment out there, but your GP will be useless to help you.

@vipersnest1 i was referred to a dermatologist, in and out in 10mins, told me there’s no hope my hair will grow back and I just need to deal with it in not so many words.

So back to GP? No idea who I even need to be referred to.

You likely have an autoimmune disorder, especially with the crumbly nails. You need a rheumatologist.

A referral to a specialist in autoimmune diseases would be appropriate. Which one, I'm not sure, but know a dermatologist doesn't cut it - and they should have referred you on, not back to your GP.

@ToBeOrNotToBee thank you - I probably need to book and be firmer with the GP, helps if I know what I’m asking for! Can’t believe all this has come out of nowhere.

@JacquiDaytona

I think 🤔 you need to consirder look into our health issue in a more Holistic approach,
Just by glancing at what you have put in your post you have obviously been under extreme stress emotionally ect,

I think you need to look at process of elimination,
such as looking to see if you have any dietary vitamin minerals difiencies lacking in important ones for your body,
as its surprising the effect it can have,
to check if you have any allergies too,

I think you lack calcium

also iron tablets should have been given to you or B12 vitamin injections in the hospital,

You need like equilvant of M.o.t. to check find out what's happening internally in regards of your body's immune system ect

I would look into seeing someone holistically like naturopathy ect,

but also looking to do tests with conventional medicine too,

@JacquiDaytona - did the derm do a scalp biopsy? Seems odd to state that without checking the follicles.

@cerisepanther73 I think you’re right. The stress of losing so many pregnancies, plus hormones, plus then a tough birth and the normal challenges of a baby has not been easy. I also had covid at 38 weeks pregnant which I wonder about the impact of. Also wonder if I’ve always had some autoimmune problem which is why I could never stay pregnant.

@JacquiDaytona

I second that too,
you beat me to it @ToBeOrNotToBee

you definitely need to see autoimmune disorders specialist such as Rumertology dept
as the painful joints inflamed ect is a classic Rumertoid athritis symptoms

Get in touch with PALS NHS website for whatever local hospital authority area yours comes under,
PALS NHS acts as a go between the NHS and patients on behalf of the patients for any issues in regards of health with treatments and services..

i have Rumertoid athritis and your physical symptoms reminded me of the symptoms i had diagnosed with your joints

No! Literally looked at my head with a torch and that was it.

I wondered about RA too, but the blood test for that was normal - it’s such weird pain though, particularly in my big toes. Doesn’t feel anything like normal muscle pain.

You can have RA without testing positive. That's why you need to see a specialist.

@JacquiDaytona

You need to have exploration medical tests to find out what is manifestation of your health issues,

Just wondering 🤔 if you could see find out if you have overgrown internal yeast thrush issue Candia that's been untreated with the doctor too?

have medication for this and see if that works eliminates the crumbly nails

Could you see hand nails and feet specialist too?..
not sure the name of them,

Is it called Podiatry ?

@cerisepanther73 interesting! Never has thrush in my life until pregnant and now get it all the time.

@JacquiDaytona

I think 🤔 you may need to be tested for Gout or Frayrmagila too,
process of eliminated thing idea

I was thinking of Sciatica too maybe

Oops typo mistake elimination *

@vipersnest1 didn’t realise that! Will go back and ask for another referral.

thank you

Isn’t a positive ANA suggestive of lupus?

@RougeFraise
You beat me to it,
i was thinking along same lines about Lupus health disorder too

Positive ANA (assuming high enough levels) means there is an Autoimmune response happening to something. It could be lupus, Rheumatoid Arthritis - anything. I would request a referral to rheumatology as they don’t seem to be interested in getting to the bottom of whatever’s happening.

I did Google it after and saw it was indicative of other autoimmune. Definitely
rheumatology referral required.

One thing you can do now, while you chase your doctor for a diagnosis, is change your diet. Go carnivore for a few months and see if that helps your symptoms.
On youtube, take a look at Mikhaila Peterson, Antony Chaffee etc.

My friend has Hashimoto's disease and alopecia - I think they may be common together.

Thank you - yes good shout, I have a fairly good diet but working full time in a senior position plus a toddler means it’s nowhere near as good as it used to be. Not strictly veggie but tend to not eat much meat, plenty of fish though.