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.

The other thing to note is that gluten is often something which often a role in absorption.

@MajorDanger Well I was to start with as no one (GP...) told me, but I found out for myself. I now often forget iron as I can't take it first thing so often only end up with 1 dose rather than 2

If your thyroxine levels are low, what do people think should happen with their TSH levels?

Yes - TSH is a pituitary hormone but its levels are controlled by thyroxine levels.

So I am unclear why people are questioning why TSH levels shouldn't be measured.

If you have an issue with your thyroid, then your thyroxine levels will be low and your pituitary gland will try to produce more TSH to encourage your thyroid. So that's why TSH is a good indicator.

However - knowing what the reference range is , how it's been calculated- and what is "normal for you" is are different - your results could be at the low end of the reference range and a year later be at the high end of the reference range - both results fall within the reference range but there has been a big change in your results.

It’s the way it’s handled as well - since being diagnosed with hashimotos, any time I go to the GP for any issue I’m told that it is due to my thyroid and sent away. People with other long term medical conditions are listened to, offered tests and alternate medication. Thyroid issues, nothing.

No the issue is that tsh is usually the only thing measured, that t3 and t4 are not routinely measured.

I would not be diagnosed if it were up to the NHS because my tsh is normal-ish, they would have said nothing wrong with you, when actually I have secondary hypo (presumed)

Thanks for all this info

@FeigningConcern & @bonfirebash , I've done a bit of digging and I'm starting a thread - any help from everyone would be appreciated

@cakeorwine That is only the case for primary hypothyroidism. I have secondary hypothyroidism and just testing TSH in my case is totally inadequate and irrelevant as it’s my pituitary gland not my thyroid that’s not working properly.

Imagine your boiler is not working. You might not know. So you turn up your thermostat to get more heat.

That's how TSH works. Your thyroid gland is not producing thyroxine. So your pituitary gland produces more TSH to try to get your thyroid gland to produce thyroxine. But that does no good as it's your thyroid gland not working.

If someone has a high TSH level, it could either lead to an increased production of thyroxine (if your thyroid is working) or it has no effect if the thyroid gland is not working.

So a high TSH on its own is not that helpful. And a TSH in the reference range may not be that helpful if you haven't got previous levels.

In some countries a TSH over 3 is sufficient to diagnose hypothyroidism.

Yes, I'm in Ireland. I was diagnosed with hypothyroidism 17 years ago as part of a work-based health assessment. I had a m/c around the same time, possibly linked.

In my next pregnancy my TSH levels fluctuated wildly throughout & post-partum, and I was under the care of an endocrinologist for about a year.

Since then, thankfully completely stable, even with 2 subsequent DC. I'm on 125mcg daily for many years.

Here, the aim is to maintain TSH as close to the lowest range as possible. Absolutely medication if TSH at 3.

It's eye-opening to read about the blood tests - I have a full range of tests done every 6 months. These will include cholesterol & diabetes checks. However, it's Ireland, so I pay €70 for the GP visit & a separate €50 for bloods. (If you were on a medical card these would be covered but most people aren't).

If you have secondary hypothyroidism, what effect do you think a low thyroxine level would have on your TSH levels?

@cakeorwine May I respectfully suggest you do some reading up on secondary hypothyroidism. I assume from your complete lack of knowledge that you know nothing about it. I hope you’re not a medical professional.

I suspect I have done more blood tests on this than you.

Hypothyroidism in Context: Where We’ve Been and Where We’re Going - PMC (nih.gov)

Overt primary hypothyroidism is defined as serum TSH concentrations above, and free thyroxine concentrations below, the normal reference range 3, 53]. It is also important to note that reference ranges are a subject of ongoing debate and differ with the assay used, as well as by patient age, sex, and ethnic origin 3]. The upper limit of the TSH reference range generally increases with age in adults 3]. Furthermore, individuals have their own TSH reference range, which effectively covers only 25% of the reference range for the entire population 59].

OK so you’re telling me that I’m wrong, when I’ve worked as a GP for 25 years, and know the lab policy?

(But I did get my secondary and primary the wrong way round)

TSH levels and reference ranges have always been subjective.
Personal reference ranges have always been subjective.

If your pituitary gland is not working, what effect do you think that will have on your TSH levels, given it's your pituitary gland that produces TSH?

And yes - if you have a diagnosis and it's confirmed that your pituitary gland is not working, then clearly measuring TSH to see how treatment is going is not going to help.

However, as a diagnosis tool for pituitary issues, then TSH levels are useful.

I had a tsh of 12 and was tested for antibodies which came back positive. The GP didn't mention hashimotos. I asked her about this and she sounded confused and changed the subject! Positive antibody test is hashimotos yes? They prescribed me 75 mcg levo back in jan and sent me for just one repeat blood test to check my levels weee reducing, but I do wonder if I should have had another by now?

I would have hoped that the GP would have diagnosed Hashimotos

Hashimoto's disease - Symptoms & causes - Mayo Clinic

I give up! On diagnosis of secondary hypothyroidism these were my results:

TSH 1.09 mu/L (range 0.27 - 4.2)
FT4 9. 7 (range 12 - 22)
FT3 4.3 pmol/L (range 3.1 - 6.8)

These were private blood tests, looking back through my NHS results back to 2016 only my TSH had ever been tested and at its highest was 2.3. I would have been left feeling crap forever if I hadn’t been able to pay for treatment.

What would you have done with these results @cakeorwine

I just don't understand the under treatment. If my TSH is 9 and I feel awful (tired, brain fog, weight gain, hair thinning) then why does my GP say my 75mcg is adequate and to carry on? I can't even talk to anyone, this was all done by text and email.

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.

I now know that having a serious case of glandular fever when I was 16/17 damaged my pituitary as a result of which I have secondary hypothyroidism.

However, it took forty long symptomatic years for me to find this out and I only found it out because I did my own research. In the end I presented my research to a GP who couldn't be arsed to read it and, after some horse trading, gave me 75mcg of Levothyroxine to get rid of me. I woke up the next morning a different woman and haven't looked back.

Throughout those forty years, I had been repeatedly told I was anxious and depressed. I started on benzodiazepines at 17 and was on and off anti depressants for the rest of that time. In particular, I suffered horrendous panic attacks that rendered me catatonic. At the end of those forty years, I had had 14 appointments with an NHS endocrinology department, allegedly a Centre of Excellence, which also failed to pick up the correct diagnosis.

In this area the lab regards FT3 as being of, and I quote, "little diagnostic value". A request for TFT will render TSH, and FT4 only if TSH is out of range. Specific requests for FT4 and FT3 will be ignored if TSH is in range. FT3 will not be done even if TSH is suppressed and FT4 is over range. TPO antibodies will be tested once, but TgAB will never be tested.

ThyroidUK saved my life. I'm sure of it. This is a national scandal and it seems impossible to get any real publicity for it.

As you can see, your TSH is within the reference range but your FT4 is below the reference range which suggests that something is going on.

The thing about reference ranges is that they are massively subjective.

When I was working in this field (which was a long time ago), I didn't think TSH by itself was that useful - as a "normal " TSH could mask an issue.

You can see the NICE guidelines here

Assessment | Diagnosis | Hypothyroidism | CKS | NICE

• Check the serum thyroid-stimulating hormone (TSH) level, using clinical judgement to interpret thryoid function test (TFT) results, especially if TFTs do not match the clinical presentation.
• Consider arranging repeat TFTs depending on clinical judgement, if indicated.
• If symptoms worsen or new symptoms develop, consider rechecking TFTs at least six weeks after the last sample.

• Suspect a diagnosis of secondary hypothyroidism if clinical features are suggestive and TSH levels are inappropriately low (may be normal), but FT4 is below the normal reference range. Note: check both TSH and FT4 levels in these cases when arranging initial tests.

Oh yes!
Years being told I needed to diet. No, I needed hormones.
Then I find that there is actual peer reviewed research showing women with Hashimoto's syndrome need a very low TSH to function. I run my at 0.3-0.5. if it's 0.6-0.0.7 I feel something is wrong. Anything over that and my symptoms are back.

Fixing my TSH and having blood tests every two months is the only way I can lose weight.