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.

[bonfirebash]

And then when you do get diagnosed and your TSH is 8, instead of following the guidelines on dose by weight you get 25mg Levothyroxine...
I'm 5ft 10

Now on 75mg after my consultant asked if they were trying to treat it with homeopathy, TSH back up to 2.5 and I feel shit. Still not even on a starting dose for my weight

[Iheartmysmart]

Oh yes, the never ending obsession with TSH which isn’t even a thyroid hormone it’s a bloody pituitary one. Thanks to this I had undiagnosed central hypothyroidism for years, still can’t get my GP to treat me as according to her my TSH is in range so what’s the problem! The fact that my FT4 was under range and my FT3 at the very bottom was ‘not an issue’ in her words. Had to see a private endocrinologist to make any progress.

[ImGonnaHaveToTurnMyBackOnYou]

I have wondered if this is my problem. They've only ever tested the basic crap test. Thyroid issues run in my family.

[Stratocumulus]

Luckily I suspected a young relative had a thyroid issue when she was in 6th form. It was a gut feeling. V strange as I had no experience of such things.
GP quickly diagnosed hypothyroidism and she’s been treated ever since. Seems to be keeping her on an even keel, she understands her condition very well but we’d agree, it’s the Cinderella of the medical arena and poorly understood.

[blahblahblah1654]

@bonfirebash

And then when you do get diagnosed and your TSH is 8, instead of following the guidelines on dose by weight you get 25mg Levothyroxine...
I'm 5ft 10

Now on 75mg after my consultant asked if they were trying to treat it with homeopathy, TSH back up to 2.5 and I feel shit. Still not even on a starting dose for my weight

I think doctors start most people on 25mcg irrespective of weight to see how you respond first and what your bloods are like. It wouldn't able advisable to over medicate. I started on 25mcg and since 2017 it's now increased to 125mcg. I'm only 5 foot 1, BMI 26 so not massively heavy. But if your levels aren't great now they should be doing something.

[MymateDave]

You have described me to a T. My gp will only test tsh. Nothing else. Which comes back in range. I paid for Thriva tests but i don’t understand the results so still no further

[bonfirebash]

@blahblahblah1654 NICE guidelines are to dose on weight
Apparently my TSH is "fine" and they won't increase it despite me sleeping after work every day

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

[MixedTocopherols]

God yes, this is me as well — following

[TheTempest]

I was diagnosed in Turkey when I had a sleeve last month. The doctors here won’t acknowledge it as apparently my levels aren’t low/high enough (can’t remember!). From what I’ve read, I have every sign and have been back and forth from the gp for years with exhaustion weight gain, joint and back pain etc. a week on thyroid meds and I was feeling amazing! Now back worse than before, and it’s just not being treated. It’s so frustrating, but tbh I have several chronic illnesses and trying to get any help for any or it feels like wading through treacle!

[AceofPentacles]

Ah is that the NICE guidelines ? Well I never. I got told off for taking "too much" because my TSH was nearly at zero, but I FELT BETTER ?? According to those weight guidelines I should be on 100mcg, when they prescribe 50.

[Shopper727]

I’ve had this my whole life, I’m on 250mcg of Levo always tired am v fat, tummy issues and I feel shite drs don’t seem to be bothered.
frustrating and wish I could go private. Would love to feel energetic and awake and not be exhausted after a few busy days.

[Fiddlersgreen]

Was diagnosed last August, put on 50mcg (I weigh 13stone) and since then had two follow up blood tests, both within “normal range” however still have most of the symptoms listed above. Doc not interested

[FictionalCharacter]

Has anyone here had a proper thyroid panel done privately?

[MintIcecreams]

I'm in the same position. My TSH is still well out of range but I was told to stick at 75mcg. I feel like crap but the doc "doesn't want to overtreat" 🙄

[Stomacharmeleon]

This is interesting. Am on Levo (200mg) due to thyroid cancer, spread to lymph nodes.
My levels are supposed to be suppressed (zero) but not so it's going up and up.

Any symptoms I had were blamed on my crohns Disease and they found my cancer incidentally.

[bonfirebash]

@AceofPentacles

Ah is that the NICE guidelines ? Well I never. I got told off for taking "too much" because my TSH was nearly at zero, but I FELT BETTER ?? According to those weight guidelines I should be on 100mcg, when they prescribe 50.

Yeah if you google NICE guidelines thyroid it's interesting reading
I've got an appointment with a pharmacist at the GP this week and I'm hoping she will let me increase it. I felt better with my TSH at 1 but they seem to be gatekeeping Levothyroxine yet I can have a drug for another condition that's £3000

[Satch76]

This is confusing, I am on 200mcg a day and am 5'5 and 9 stone 12 if that has any relevance? I wasn't aware weight/height was involved in dosage

[BiscuitsandPuffin]

I think hyperthyroidism is just as badly underdiagnosed. Anything thyroid related and they're utterly shit about it. Probably because it mainly affects women, as you say. It's a complete scandal.

[MumblesParty]

Ah how lovely, another GP bashing thread, what a joy.

Most labs will only test TSH, then if the TSH is abnormal they’ll test T4. It’s not up to the GP what tests are done.
If the TSH is normal, the GP can’t just say “ah fuck it, I’ll give you thyroxine anyway”. They’d risk being sued if the patient suffered adverse consequences.

But hey, crack on with slagging off GPs, soon there won’t be any left to be upset by it.

[Darklane]

@Satch76

This is confusing, I am on 200mcg a day and am 5'5 and 9 stone 12 if that has any relevance? I wasn't aware weight/height was involved in dosage

Neither was I.
I’ve been on 100 mg for years. Was only diagnosed accidentally when in hospital for something unrelated, my GP had never picked it up despite my having all the symptoms.

[BlackFlyChardonnay]

Same here. Battled to get diagnosed and medicated. Still only on 50mg despite being 12st 10lb. Gp offered me antidepressants instead of increased levothyroxine as I'm obviously just anxious and imagining my symptoms 🤨

[MintIcecreams]

Not GP bashing, I appreciate the work that they do. However I cannot understand why mine won't increase my dose when my TSH is 9 and according to guidelines I should be on 150mcg.

[Iheartmysmart]

I’m not GP bashing either but I really don’t see why my quality of life should be utterly shit just because my GP can’t interpret my results properly and treat accordingly.

When the surgery won’t accept my private blood test results and the NHS will only test TSH, which is totally inadequate in my circumstances, what am I supposed to do? Spend the rest of my days feeling shite, huddled under a blanket on my sofa barely able to keep my eyes open and certainly not able to hold down a job just in case I upset my doctor.

[dreamingbohemian]

@MumblesParty

Ah how lovely, another GP bashing thread, what a joy.

Most labs will only test TSH, then if the TSH is abnormal they’ll test T4. It’s not up to the GP what tests are done.
If the TSH is normal, the GP can’t just say “ah fuck it, I’ll give you thyroxine anyway”. They’d risk being sued if the patient suffered adverse consequences.

But hey, crack on with slagging off GPs, soon there won’t be any left to be upset by it.

Bullshit

I have my TSH, T3 and T4 tested every time, per the GP. So of course they can run a full panel. They just don't for whatever stupid NHS bureaucracy reason and because no one cares when it's women disproportionately suffering.

I am only being treated now because I got a private test that showed low T4. That would not have been caught on the regular test. According to NICE I should be referred to endocrinology but they won't accept me because I'm doing OK on meds. Never mind that there could be a more serious problem going on, like a pituitary tumor (it's not autoimmune related).

If anyone can recommend a private endocrinologist in London I'd really appreciate it! But I shouldn't have to ask.

[dreamingbohemian]

@Iheartmysmart

I’m not GP bashing either but I really don’t see why my quality of life should be utterly shit just because my GP can’t interpret my results properly and treat accordingly.

When the surgery won’t accept my private blood test results and the NHS will only test TSH, which is totally inadequate in my circumstances, what am I supposed to do? Spend the rest of my days feeling shite, huddled under a blanket on my sofa barely able to keep my eyes open and certainly not able to hold down a job just in case I upset my doctor.

My GP couldn't accept the private test however they could use it as the reason to order a full panel, then I got treatment. Is your GP refusing to do that? Can you ask another GP?