The scandal of our massively under diagnosed hypothyroidism...

[rosepoet]

Underactive thyroid affects 10x as many women as men!
My pharmacist spoke of all those 40-ish Victorian women who went into declines, lying on sofas= because they had undiagnosed under-active thyroid!

MASSIVELY undiagnosed, still.
So much entirely avoidable suffering.
The list of symptoms is impressive...
Feeling out of sorts?
Constantly fatigued/drowsy, having afternoon naps?
Weight gain?
Digestive issues? Bloating?
Constipation?
Cold sensitivity
Body hair loss?
Stiffness, joint pain.
Dry eyes?
Frequent urination?
Muscle aches and tenderness?
Forgetfulness?
Mind fog?
Dry skin, dry hair.
Yoyo weight.
Disturbed sleep?
Acne flair ups?
Fingernails that flatten round your fingertips?
These are ALL symptoms of Hypothyroidism- which can lead to Hashimoto's thyroiditis. It is hugely under-diagnosed. Perhaps because it affects 10 times as many women as men...''It's your age.' 'Women's problems.'...
It creeps up on you. You need to ask your doctor for a FULL PANEL of tests, including checking whether you have thyroid anti-bodies.
I kept going to my doctor and he did the same single test on my TSH. It is not enough!
This should be a huge scandal.

What if antibodies are found and immunology ask that you be referred to endocrinology by letter, twice? And the patient never gets referred because "it's not needed" despite them having multiple autoimmune conditions
And there is room for increasing levo but instead of trying a small levo increase you refer for a sleep study?
Or you miss the fact your patient was neutropenic for 8 years until a locum GP spots it?

Yes, I've changed doctors now
I'm not bashing all doctors, the locum was amazing and sent me straight to haematology but I have multiple conditions I manage and it's frustrating sometimes

Like to be asked "and what causes your autoimmune neutropenia?"
Um. Autoimmune? I dunno!

I could have written your post op. Took me two years battling weight gain on a 1200 calorie diet, depression, fatigue, constant swollen hands and feet, the classic pie crust tongue etc with my gp insisting I was fine. Only when I had the good fortune to see a locum that I got a test that included TPO antibodies did I get a diagnosis of Hashimotos and Levo prescription.
For the last 18 months I have been better but recently started gaining weight, feeling fatigue etc so I went back and explained I think my dosage needs increasing, so my bloods were taken and Im told Im in range, no increase necessary. It’s infuriating to be back in the position of having to convince people I need treatment.

This isnt a GP bashing post, but Ffs I KNOW MY OWN BODY!! I never visit the doctor, EVER. So I I go and say Im unwell, why does noone believe me??!!

I was diagnosed a few years ago. Have never felt well since and currently feel shocking, absolute exhaustion.

Please can someone specify exactly what I need to ask for with my next blood test?

I'm on 100mg thyroxine. Also anaemic.

It’s also interesting how many people on here have such strong feelings about their prescribing but don’t actually know what they’re prescribed….thyroxine doses are micrograms not milligrams.

It’s scandalous esp as the normal ranges are different to the rest of the world deliberately to under diagnose it. They’re cheap drugs so it’s got to be cost effective nationally to have people well and able to work and function!! The only time I’ve felt well is when I got some natural desiccated thyroid (eg the world wide main treatment before it was manufactured artificially) but they won’t prescribe that either.

see also low iron which also disproportionately affects women!!

I've got lots and lots of symptom and had thyroiditis twice. It was very painful. I genuinely thought I had a brain tumour as it was so debilitating. I have another autoimmune disorder too. My GP keeps saying that my thyroid levels are not quite in the normal frame but not bad enough to medicate. I feel I'm just going to slowly get worse until they eventually give in and treat me, when I probably could be feeling a bit better already and be getting some medication.

Is there any reason the levels are so different here compared to say America?
Are the side affects of levo that catastrophic if they get it wrong.
My treatment has been top notch but my beat friend is really suffering due to 'just' being in range.

@dreamingbohemian My GP is utterly disinterested, for some reason she is fixated on the fact that my TSH is in range which of course it will be as the issue is with my pituitary not my thyroid. No other GPs currently at the surgery and I can’t swap to another practice as they are all closed to new patients. I’m well and truly stuffed as far as the NHS goes.

I made a typo, I know it's not mg and it's store in my phone as that but between the amount of medication I take and the brain fog and being used to typing mg...
couldn't tell you the doses of the injections I do though and I'm pretty knowledgeable about that condition

@Bemyclementine you aren’t taking your thyroxine with iron are you? It affects absorption.

@Stomacharmeleon my Endo says over treating runs the risk of Atrial Fibrillation. He has allowed me to be over treated in the past but reduced me a couple of years ago.

Wholeheartedly agree. I had half my thyroid removed in 2018 due to non cancerous nodules - they were supposed to remove the whole thing but the surgery had to be stopped as a vocal cord was severed.

The remaining half is more nodule than thyroid yet I'm still told it's functioning 'normally'. I was prescribed 25mcg of Euritox (I'm in Portugal), I've upped it to 50mcg with no effect.

I sleep for at least 2 hours every afternoon and have to eat one meal a day to prevent weight gain 😠

I was born without a thyroid so have been taking medication my whole life, although they ease the symptoms they don’t get rid of them completely. Every day is a lucky dip of which symptoms wants to come out and play… I’ve learned to live with them, although it’s took the best part of my life to get my levels right, due to puberty, pregnancies etc they’ve change many times.
my biggest irk is that the medication I take, has a weight gain side effect, plus a symptom of weight gain, the doctors constantly bang on about your weight, it’s hard to find doctors that specialise in endocrinology nowadays, well where I live it is. I get constant grief about weight… I roughly stay the same give or take a few pounds, i exercise, I eat fairly healthy, I don’t smoke or drink…
it’s a hidden disease that people don’t get…

I am meant to be taking 100 mcg one day and 75 the next but I take 100 every day because I feel better doing that. Am I being unwise?

Wow... that's just described me completely. I'm napping in the afternoon which is completely unlike me, maybe worth getting checked out then

I've had to deal with this living in two different countries with different healthcare systems. As a result read a lot of forum and blog posts over the years.

There's a general lack of understanding about it both by GPS and in systems where you go straight to a specialist, amongst those specialists, unless theyre endocrinologists.

What's also clear is that it's picked up in men almost straight away, whereas women have to fight. A middle aged woman, somewhat overweight, tired, depressed visits the doctor with those complaints and is told to rest more and take up yoga/meditation/do more sport. A man comes with those complaints and he does not get told to join a yoga class, he gets blood tests.

The issue of symptoms not being believed extends far further than NHS GPs.

@Mindovermatter247 my story is identical to yours, born without, although they didn’t know then until I was in my 20’s my sister had thyroid cancer so they scanned me as a precaution due to that and my grandmothers history and I have a non functioning nub. Was a very poorly baby.
how did they find out you don’t have one?

its crap, but I guess I know no different but I do wish the way we feel despite being on ‘treatment’ was taken more seriously, I don’t think wanting a dr to listen and take someone with a 44 year history of thyroid issues seriously ‘bashing’ them perhaps if there was more research or understanding about thyroid issues that would help but quite frankly with a full on nursing job, house kids etc I’m too exhausted to fight it at the moment. It’s a vicious cycle.

once diagnosed really you should be seeing a endocrinologist I was referred after 8 years and for a few years I was being overdosed with medication so just slipping into being hypo and felt awful but symptoms are not that different

my gp had a better understanding as she herself has an under active thyroid and recognised the treatment wasn’t working

im slightly low now I don’t take medication at the moment but have regular blood tests (full function test). Thyroid function often fluctuates I can certainly feel this and it’s not one treatment fits all it’s a complex diagnosis

That is very high! I don't have a thyroid post-thyroidectomy and I'm on 125 per day and I had to fight for that. But if it works for you, great!

I completely agree, women are FOBBED OFF with this. Especially post/menopausal women. I had an amazing endocrinologist when I was very ill who really listened to my symptoms and adjusted my dose accordingly. But they are rare and I tell me friends who are barn-door obvious under active that you really, really have to advocate for yourself.

I was born with jaundice actually, which is apparently a huge symptom for congenital hypothyroidism ( my diagnosis) and they then heel prick tested me, and then I think there were some scans and they found out I was born without… that was back in 88… mums a bit shady on all the details.

It seems like we need a big push of combined outrage/positive energy with a high-profile person spearheading it, to raise awareness of how poorly the whole thing is handled and what the consequences are. Kind of like Davina McCall with the menopause issue.

I have had undiagnosed issues since having children, and I rub along okay, but I often feel like it — the undefined “it” that has an awful lot in common with symptoms of low thyroid — has cast a big shadow over what should have been the most productive years of my life.

I’m still productive, don’t get me wrong. But it leaves me with not much in the tank for anything beyond work and keeping family life going.

@bonbonfirebash I'm 5ft 10 and my thyroid levels were only slightly under when I was first put on levothyroxine around 15 years ago.I was put on 100mcg and have been on 125mcg since had my ds 9 yrs ago.
Never had a problem felt normal ever since.
I'm so shocked that people suffering are on such low doses I had no idea.

It took three years from diagnosis to finally getting the right dose of levothyroxine for me and that was only because I pushed and pushed for it.
I had two separate GP's try and tell me that a TSH of 5 was normal even though I felt dreadful, had horrendous brain fog, gained two stone in weight and was going to bed at 7pm every night and still dog tired the next day. I actually had to send them an email with a screenshot of guidance to prove that that is only a 'normal' TSH if you don't have a diagnosis of hypothyroidism. Honestly, it so frustrating that the majority of them can't be bothered to educate themselves properly about something that they should be able to manage easily and competently in primary care. This thread just proves the absolute ignorance.

The pp really sint talking "bullshit" (how rude). Different NHS Trusts have different rules and practices. I know my NHS trust is as the pp stated. And no, I'm not a GP.

Can I ask are the experiences and concerns on this thread specific to NHS or is this an issue with the medical community in general? I'm not in the UK but reading with interest.

What does "gp* mean?? It means general practitioner...

They have a foundation but not expertise in many areas.