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.

If it's helpful for anyone, I had my thyroid surgically removed and I now take 125mc per day. I had to push for that, my lovely ENT surgeon said my bloods were perfect on 100mc per day and I felt awful. My tsh is low, 0.2. But I tend to go by my T4 which hovers around 19. It was 15 on 100mc and I felt foggy and lethargic all the time. I'm the same size and weight I was at 18 (having ballooned three stone during the florid phase of my disease)

If you don't feel right, your dose isn't right. Be politely stroppy, do your research and don't be afraid to present your GP with it. There just seems to be no insitutional willingness to consider the link between thyroid hormones and how dependent women's health is on other hormones and how they all interact. It is shocking that we have to be so self-informed and be such advocates for ourselves but when was it ever different for women's health?

I'm questioning why my GP can explicitly order TSH + T3 + T4 and you cannot. Are you saying the lab will refuse to do that test? And you think that's acceptable? How are you meant to diagnose thyroid issues properly?

My GP is just a regular GP in South London with a massively underresourced trust, he doesn't have special powers.

If anyone has time I started a thread
https://www.mumsnet.com/talk/general_health/4844996-can-someone-talk-me-through-thyroid-test-results-10-years-worth

I think I might have issues

We also need T3 which they will not prescribe in this country for some reason.

Thank you! Much appreciated 😀

It seems maybe going to a private endocrinologist might be the only answer for many. How to find one is another question. I’m beginning to think that the way I’m feeling isn’t pre diabetes but hormone related.

My doctor told me I was just fat. I had a private test which showed I had hashimotos and then my doctor believed me.

Just jumping in to say my TSH was 100 when I had my first test!! I felt appalling.

That was 5 years ago as a new mum, some things have improved, my hair isn’t falling out in handfuls & I’ve lost some weight, but I’m constantly exhausted, my body hair is nearly nonexistent and brain fog is terrible. I used to be so on top of things and now I just constantly feel like I’m failing.

Along with some other medical issues- I have a spinal cord injury- I’m completely terrified how my body is going to function as I’m getting older.

Me neither. They shouldn't

I get up in the morning in tears wondering when I can go back to sleep because I feel so groggy. Ok until after lunch when I drop again and then sleep for 2hrs after work to function
Not depressed, I WANT to do stuff but I can't because my body is just you need to sleep now
Hair loss, weight gain, eyebrows falling out

How do you get them to be kept that low? Mine are 2.5 and nobody will increase my levo and I can't afford to go private (I could for a consultation but not the ongoing prescriptions)

I can see some of the arguments here about not testing fully or ignoring borderline levels. However some people seem to be suggesting that all their results come back well within normal but still wanting treatment? Surely that’s quite dangerous

Yes I don't really understand this. Surely doctors can't be prescribing medication if your levels are classed as ok, it could be quite dangerous. Symptoms are quite vague and may not be hypothyroidism in some cases anyway.

I think the argument is that "normal" here is not normal elsewhere
Everyone in the thyroid FB group I'm in that has seen a consultant has said levels should be kept as close to 1 as possible (consultant said this, not them!)
TSH of 7 here was referred to as normal, but elsewhere would have been massively out of range - if you're trying to get pregnant I think it's 2.5 it should be under

Here up to 10 and you have to have a second blood test done, started on 25mcg levo which is under dosing anyway, then see how it goes, more bloods, up the dose, more bloods, GP won't increase the dose despite TSH being 6
It can take years while you're feeling horrific

I think part of the problem is that both the testing (ranges of normal) and the treatment (levothyroxine) are blunt tools for a delicate and very individual issue and there should be a degree of treating patients and symptoms rather than treating just numbers.

Levoythroxine (T4) is inactive - in order for your body to utilise it, it has to be converted into T3, which is the active form of thyroid hormone. Many thyroid patients are not very good at the conversion and can therefore feel terrible with TSH and T4 that look ok, and doctors in the UK don't routinely test the T3 of thyroid patients, which is absolutely shocking, as that's where the answer often lies.

One of the diagnoses I received along the way, from a Professor of Endocrinology, was "lack of motivation ". It wasn't that I wasn't motivated, it was that it is difficult to achieve anything when you have to lie down after a shower and sit down after coming downstairs.

I was also diagnosed with "workplace stress" by a consultant haematologist when my ferritin was one point over the bottom of the range and I'd told him I was struggling to cope with my job because of the overwhelming fatigue.

I'm sure men don't have to put up with this nonsense!

shrug a decent GP who listened to me.

"Normal" is a statistical distribution not a target for an individual.

So how do I get tested for T3?

@Iheartmysmart my results are like yours- normal TSH although just under 2 - but10.1 T4 - I have many of the symptoms but GP thinks they are fine!! And it runs in my family too in females- I'm 61 -

Unfortunately, the best answer is to find a doctor who agrees that it should be tested and who will action it. Easier said than done, I know.

The easiest thing is to order a test and do it by mail, there are a couple companies doing this, but it does cost £40-60 usually.

In my case I could take the test results to my GP and then they ordered blood tests on the NHS and I was officially diagnosed.

Tell me about it. I’ve got a massive goitre that is pushing against my windpipe. Scan shows it’s pushing windpipe ( can’t remember the proper term) to one side. I’m knackered constantly. Given up trying to get a dr to do anything about it.

Came back to update

New doctor is amazing. Levo increase, confirmed I have hashimotos and my thyroid is struggling due to my t4 level and is sending me for a t3 blood test (which I've never had) and loads of other bloods as he wants a baseline for me for vitamin levels etc

I am at my wits end with my thyroid levels.

My issues have been ongoing for well over 10 years and I've been under the endo for that long where in the past she's said that my levels are 'complex'. I had radioiodine treatment about 2 years ago but my levels as of last week are:

Free T4 - 19.6
TSH 14.4

Apparently, so the endocrinologist told me that you can't have both high levels without there being user error on the tablets and that I must be taking them with other medications / caffeine but I'm not. I categorically take them when I get up and have nothing else for at least an hour. I've put on 5 stone in 3 years, my hair is falling out and has gone so thin, I barely sleep and feel like utter shit.

I woke up this morning - at 4.30am as usual - and decided enough is enough, I can't go on like this. I get a 5 min phone consultation every 6mths or so, my levothyroxine gets increased (currently on 150) and that's it.

I think the only way forward for me is to see a private specialist. I can't bear the thought of living like this with no end in sight.

@ElephantOnSticks I don't know if this helps but I was looking at this privately
Not too extortionate

https://www.thethyroidclinic.co.uk/the-doctor//*