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Original poster

The scandal of our massively under diagnosed hypothyroidism...

158 replies

rosepoet · 08/07/2023 20:44

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.

OP posts:
Utini · 20/07/2023 13:42

MrsMcisaCt · 09/07/2023 10:02

Interesting thread. A friend of mine had 4 miscarriages, then found out she had hypothyroidism, started treatment, and went on to have a healthy baby. It upsets me to think women could be going through the trauma of many miscarriages because no one has bothered to check their thyroid levels.

Yes this is awful. I have a friend that had two failed attempts at IVF, the second resulted in a miscarriage. She is hypothyroid, on thyroxine, and from what I've seen of her symptoms and bloods is undertreated.

Nice guidelines are (or were at that point, don't know if they've changed) to immediately increase thyroxine on confirmation of pregnancy, and to test every four weeks until (I think) 16 weeks when the baby's thyroid takes over.

None of this was done. You'd think the fertility clinic would be on top of all this, so sad to think it may have been avoidable.

BatshitCrazyWoman · 20/07/2023 15:06

The Health Unlocked thyroid forum is excellent, lots of very knowledgeable posters on there. Plus Thyroid UK will send you a list of private endocrinologists (which includes their stance on prescribing T3). I see a private endo as my GP seemed to be happy to leave me with untreated hyperthyroidism while I waited a year for an NHS endocrinology appointment. I found my endo on there, he treats me on symptoms AND blood test results.

Nomoreheroics · 20/07/2023 16:31

BatshitCrazyWoman · 20/07/2023 15:06

The Health Unlocked thyroid forum is excellent, lots of very knowledgeable posters on there. Plus Thyroid UK will send you a list of private endocrinologists (which includes their stance on prescribing T3). I see a private endo as my GP seemed to be happy to leave me with untreated hyperthyroidism while I waited a year for an NHS endocrinology appointment. I found my endo on there, he treats me on symptoms AND blood test results.

Thanks that’s really helpful.

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BreakingPointAgain · 21/07/2023 06:01

RainbowZebraWarrior · 20/07/2023 12:51

My poor 11 year old DD was diagnosed with hypothyroidism in January of this year. It came about as we were seeing the Paediatrician about something else (she has Ehlers-Danlos Syndrome among other things) I'd said I'd like some bloods done as she had never ever had any and was constantly exhausted. The Paediatrician (who is a nice chap overall) still gave me the "Silly Mummy thinks there is something sinister going on, but we will do some bloods anyway" Obviously, I was right and there was something up after all. I am so done with the attitude though. Silly woman and her silly daughter. Silly women overall. Doesn't help that my daughter is Autistic and has selective mutism so just sits looking terrified while I speak on her behalf. This just all adds to the feeling that they think I probably make shit up or exaggerate.

The Paediatrician says that once her Thyroxine meds are right, he will discharge to the care of the GP. I'm going to ask a few questions at next appt about antibodies etc as so far, he has only said that it's possibly Hashimoto's. To add insult to injury, latest bloods show that she is now anaemic so the GP is running more bloods to check B12, Ferritin etc as well as putting her on iron tablets.

School don't give a shiny shite either.

Who would be a woman, eh?

Ask for a blood test for coeliac disease, it is often found alongside thyroid issues, anaemia is often a symptom too.

ThrappleApple · 21/07/2023 06:37

Ask for a blood test for coeliac disease, it is often found alongside thyroid issues, anaemia is often a symptom too.

I was 'diagnosed' with hashimotos in my mid twenties, diagnosed coeliac about 7 years later. I no longer take any thyroxine after removing gluten from my diet.

sunshinesupermum · 22/07/2023 13:05

That's interesting about coeliac disease ThrappleApple. What symptoms led to you being tested for it?

ThrappleApple · 22/07/2023 15:00

Persistent anaemia despite taking iron for months and months.

IfLoveBelievesInMe · 22/07/2023 15:04

It's a national disgrace. I'm shocked as to why the NHS won't spend the money on proper diagnosis and treatment. .

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