Still here plodding along with an undiagnosed UAT - Thyroid UK

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Still here plodding along with an undiagnosed UAT

KerryHomer40 profile image
15 Replies

So I posted about 7 moths ago and I am a bit of a lurker, I read alot of posts but don't comment a lot.

7 months ago my TSH was 3.11 Now its 3.62 (range mIU/L 0.27 - 4.20)

Free Thyroxine (T4) was 12.6 Now its 10.5 (range pmo1/L 12.00 - 22.00)

I had my bloods done through Medicheck and the feedback was that my T4 was low and showing signs of failing but TSH isn't high enough for concern.

I have been taking Vit B12, D3 and zinc which have helped with some of the symptoms that were really getting me down like brain fog, tiredness etc.

I was also worried that it was the menopause giving me conflicting symptoms, because I had a partial hysterectomy which means I kept my ovaries but they could die and put me in early menopause. I had this tested as well and I am NOT in menopause.

I haven't bothered going back to my GP yet as I know he won't take my symptoms seriously until TSH is higher, I will test every 4-6 months to keep and eye on it.

I have also gone gluten free as I suffer with Psoriasis and this has helped a little.

Anyone else in the same position as me and is there anything else I can do myself?

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KerryHomer40
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15 Replies
Clutter profile image
Clutter

KerryHomer40,

You should show the results to your GP. FT4 is below range so, despite TSH still being within range, you are hypothyroid and should be prescribed Levothyroxine.

KerryHomer40 profile image
KerryHomer40 in reply toClutter

GP said they won't do anything as my TSH is "normal"

Clutter profile image
Clutter in reply toKerryHomer40

KerryHomer40,

Show your GP the NICE CKS cks.nice.org.uk/hypothyroid... and insist GP considers secondary hypothyroidism or isolated TSH deficiency. FT4 below range confirms hypothyroidism and you need Levothyroxine replacement. If your GP won't listen speak to another GP at the practice.

KerryHomer40 profile image
KerryHomer40 in reply toClutter

Thank you I will do, without talking to people on here and a facebook group I follow, I wouldn't have had any idea what was making me feel so ill.

Clutter profile image
Clutter in reply toKerryHomer40

KerryHomer40,

It's hard enough getting primary hypothyroidism (high TSH) diagnosed. It's harder to get a diagnosis of secondary hypothyroidism (low-normal TSH with low FT4) when doctors have so little training in thyroid dysfunction and tend to only consider primary hypothyroidism. You may need to be very assertive to get a diagnosis. Try to persuade GP to prescribe Levothyroxine while you are referred to endocrinology.

KerryHomer40 profile image
KerryHomer40 in reply toClutter

I spent so long thinking I was going mad as they said there is nothing wrong with my thyroid that I lost my confidence, but the number keep changing so it can't be right

Clutter profile image
Clutter in reply toKerryHomer40

KerryHomer40,

You're not going mad, just unlucky not to have a GP who knows more about thyroid. Google Secondary Hypothyroidism or Central Hypothyroidism to find out more.

KerryHomer40 profile image
KerryHomer40 in reply toClutter

Will do x

greygoose profile image
greygoose

That's a silly comment, because you could have Central hypo, where the problem is with the pituitary or the hypothalamus, rather than the thyroid itself. In which case the TSH will never get to the level desired by doctors.

Did you also have your FT3 tested? Was that also under-range? If it was, then you really should go to your doctor with the results.

Have you had your antibodies tested?

KerryHomer40 profile image
KerryHomer40 in reply togreygoose

T3 was low and when GP tested antibodies just told me it was negative

greygoose profile image
greygoose in reply toKerryHomer40

Yes, but how low? Was it below range, like the FT4?

You cannot take your doctor's word for it being negative, they have their own axe to grind. You need to ask for a print-out every single time you have a blood test. In the UK, it is your legal right.

Even if it was negative, that does not prove you don't have Hashi's.

KerryHomer40 profile image
KerryHomer40 in reply togreygoose

T3 was 3.6 range was 3.9 - 7.7

After reading everyone else's experiences with GPs I have been kind of going alone, I have been keeping an eye on things through medicheck until I felt I have more evidence.

greygoose profile image
greygoose in reply toKerryHomer40

But your FT3 is also below range, so there's obviously something wrong with the TSH - it should be much higher than that! Surely even the most idiotic of GPs could see that.

You need thyroid hormone replacement, sooner rather than later, before you become really ill.

KerryHomer40 profile image
KerryHomer40 in reply togreygoose

I will take all my paperwork and go to see my GP again

greygoose profile image
greygoose in reply toKerryHomer40

:)

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