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AIBU?

To ask here for a science explanation re thyroid levels and TCC please?

36 replies

gladhoc · 13/08/2014 17:45

NICE CKS recommend for a new diagnosis of subclinical hypothyroidism when pregnant or TTC:

"Aim for a TSH concentration in the low-normal range (0.4–2.0 mU/L) and an FT4 concentration in the upper reference range."

And yet, with symptoms, and TSH levels of double that, and FT4 at the bottom of the range, this does not apply to me? And apparently this is okay because these levels are "my normal"? (One test)

I am struggling with the logic and would welcome any insights into how the science of this approach works please?

I have had some excellent advice in General Health which has been much appreciated. I am just a bit overwhelmed with it all.

Many TIA

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gladhoc · 28/08/2014 10:43

swlondon thank you, and I am sorry to hear about your experiences, too. Is your endocrinologist based in London?

Dino are you able to explain why TSH and FT4 levels matter when ON thyroxine, and not with a potential new diagnosis of subclinical hypothyroidism?

Or why the range is adhered to so closely when it seems to be scientifically impossible that all symptoms and fertility problems kick in only the moment levels tip out of range?

Or why it would not be recommended for me to start IVF with the levels I have, and yet the levels are not deemed (by my endocrinologist) to be a problem for conceiving and maintaining a pregnancy naturally?

I am confused, and this is what I am trying to understand, very hard!

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gladhoc · 29/08/2014 10:03

Dinosnores, since you seem to be a doctor - possibly an endocrinologist from the tone of your post - it would would be much appreciated (and would reassure me greatly) if you were able to explain the reasoning behind the guidelines you link to, which is what this thread is about?

They don't make sense to me, but then I do not have the benefit of a science background.

I can find plenty of information about why the guidelines are as they are for ttc and pregnancy when someone is already being treated or has a new diagnosis, but none which answers the above questions.

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Pobblewhohasnotoes · 29/08/2014 10:22

I know you said you went private but have you looked for an endocrinologist that specialises in fertility? Each endocrine consultant has their own interest within that speciality, some with diabetes, thyroid, fertility and prolactinomas etc. I have a prolactinoma as well as hypothyroidism and couldn't conceive until my prolactin was low, was 2000 initially.

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gladhoc · 29/08/2014 10:39

That seems the next step Pobble. Especially after my prolactin has jumped from 750 to 988 in the past month.

I saw this man privately because I'd been referred to him on the NHS, and it seemed to make sense to see what he'd say and get a couple of months start with some initial advice.

Since my GP surgery cancelled the referral (despite me saying it was just for some initial advice and not about going private full stop), I am now not in the NHS system. Should there be a turnaround at the next appointment (which I think is unlikely,) I will possibly ask to be re-referred to that department.

If the approach is the same, then it's a referral to another hospital, or finding someone privately. I very much don't want to waste months and months waiting, due to my age. And also I'm exhausted and my hair is falling out!

I just want to find the right person to go to, who will listen.

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Pobblewhohasnotoes · 29/08/2014 11:52

It could be that it's your pituitary that's the issue rather than your thyroid, as it's your pituitary that releases the TSH. I was diagnosed with an MRI and put on medication. My GP referred me straight away however.

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gladhoc · 29/08/2014 12:03

Exactly, Pobble. The endocrinologist I'm seeing currently says he'd only investigate a prolactin level of over 1000, though.

We shall see if the jump to 988 is enough to warrant giving it some thought.

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stopgap · 29/08/2014 12:12

I have Hashimoto's but I'm in the US, and my endo was insistent that I fall below 2.5 during my pregnancy, and was monitored accordingly. Personally I feel lousy with a TSH over 1, although I feel much more even-keeled during pregnancy.