Thyroid problems experiences

[ShinySylveon]

Already tried posting in general health but no response, so trying chat.

I have just had a thyroid function test as part of the over 40s health check (I'm 41). It has come back with a TSH of 13.0 and T4 10.2. This seems to be high for TSH but T4 in the normal range. Is this something that should be treated? I will be waiting for a couple of weeks to speak to a doctor about it so I am just interested in hearing other people's experiences.

My TSH was 87 when I was diagnosed. I had the blood test at 9.30am, by 4pm I had my gp knocking on my door with a packet of levithyroxine and an ambulance on its way. He'd been fobbing me off for a year when I kept going to see him because i felt so ill.

@Sugarplumfairy65 oh my gosh how terrifying! I hope you are ok now

My TSH was 26 when I first went ans I was just plodding along thinking that the feeling was due to age or whatever. I used to feel so tired that I thought I would drop dead and used to get blinding headaches which I just thought were migraines. You'll feel amazing when u start treatment

I guess my level of 13 isn't too bad then 😃Hopefully I'll get somewhere today.

I'm still waiting on a hospital appointment for treatment. Does anyone have any idea how long waiting times are ?

sorry for jumping on your post op.

I guess my level of 13 isn't too bad then 😃Hopefully I'll get somewhere today.

it’s really not a good situation to be in and totally unnecessary for you to be living like this.

id certainly be pushing for no less than 100ml of thyroxine and another thyroid function blood test in 8 weeks.

also be aware that once you start on thyroxine, all your prescriptions are free

Thank you. Unfortunately I've got an incurable cancer now and a host of autoimmune conditions so am not in the best of health but I'm managing.
I've taken 175mg of levithyroxine for the last 14 years. It means I'm slightly over medicated and my TSH is slightly below 1 but that's the level that seems to be best for me. Any higher than that leaves me feeling unwell. My gp goes with how i feel rather than the numbers on my blood results.

I finally got to speak to a doctor and have been asked to go in for another blood test today. It will check the TSH again and also antibodies. Slightly concerned this one will be normal and I will be left confused.

Sorry to hear that @Sugarplumfairy65

ShinySylveon

how long since you had your last blood test? how many weeks?

Its usually only a couple of days, if that before the gp can access your blood test results on the computer. If you have the NHS app (this is great for repeat persciptions and booking appointments, its worthwhile getting) you can see your test results on the app.

If your TSH did come back normal - well that would be fantastic news

But if not hopefully your gp will start treatment without delay

@ShinySylveon if the TSH is normal with no antibodies then the first result would have been a lab error. I suspect a lab error is very unlikely and the result will be similar though. It is always good practice to recheck and if the TSH remains as high then you will be started on levothyroxine and the dose will be titrated alongside blood tests until your TSH is in range.

Hashimotos is the most common autoimmune disease in the world and while it feels stressful to have this diagnosis and to be on medication for life. The majority of people are stable and well and the treatment fits well around their life. You will also get a prescription exemption card and not have to pay for any prescriptions once diagnosed!

I got my new result. TSH now 16 and T4 is just below the threshold at 10.4. I guess that is conclusive now.

Definitely
They were more inclined to treat when my T4 was dropping and less fussed about my TSH for some reason

@ShinySylveon that doesn't surprise me, have you got the medication ready to start?

Are the antibodies back?

Make sure you ask for them to fill in the form for the prescription exception card given this diagnosis, they should be able to provide the levothyroxine for free at the pharmacy without this though, you just need to tell them you have hypothyroidism.

I'm still waiting for the antibodies result. I was told it should be today though.

I have a prescription being processed for 50mg thyroxine.

I was wondering about how to get free prescriptions, I will mention it when I go to the pharmacy.

@ShinySylveon they should give you the levothyroxine for free as the reason to be on it is hypothyroidism. You need to get your GP to fill in a form that they should then send off for you to receive a prescription exemption card in the post.

Update us with the antibody results when you get them.

Antibodies seem to be negative - 28 iu/ml
(range 0 - 60 iu/ml)

I guess not autoimmune?

@ShinySylveon you need testing for both:

Peroxidase and thyroglobulin antibodies.

Tell the GP if they only tested for one then you need the other adding on.

I did mention GPs don't always do this, the medichecks test I recommended is a back up option if the GP won't test for both. It is very important that you know if you have either of these antibodies.

@Gardenlady543 do they only test for both if one is negative? I had positive peri.. that one I can't spell and immunology said I should see an endocrinologist
GP refused referral and said it was just to be treated as sub clinical. Eventually I ended up where I am now on thyroxine but never got a referral or the other one tested for

Found the letter from when I was diagnosed

Argh, I thought I would get the test for both. I will see what she says tomorrow and then get a private test.

@Pelo22 I would would hope that both would be tested for before treatment is started, but peroxidase is positive in 90% of cases of hashimotos. It is therefore the one most doctors think to test for, I guess you could take the approach of testing for the most common first but then it seems a bit silly to have to call someone back in to draw more blood for the other one in 10% of cases, plus both could be positive and I guess it's good to know this from the start. You could technically ask the lab to try and add it on if the sample is still usable.