Borderline Thyroid test

[Taddo12]

Hello everyone,

Just looking for a bit of advice. Judging from these posts, I am not alone. I've been feeling pretty lousy for as long as I can remember. Irregular periods, hair falling out, cold sensitivity, tingly fingers and debilitating fatigue. The fatigue is the worst. I just want to crawl back to bed, but I can't sleep at night.

I've had two blood tests which both show borderline/ abnormal thyroid results, but no one seems willing to do anything. Thought I'd post my results here and see if anyone could shed any light on how abnormal it needs to get before someone will help. I don't really want to wait another 3 months feeling like this for another blood test. I'm told it takes a while to get meds sorted once you receive a diagnosis.

My first blood test results:

Serum TSH level (XaELV) 4.5 miu/L [0.2 - 4]

Serum thyroid peroxidase antibody concentration (XabCy) < 28 kU/L [0 - 60]

Serum free T4 level (XaERr) 14.1 pmol/L [11 - 22.6]

My second blood test results:

Serum TSH level (XaELV) 5.9 miu/L [0.2 - 4]

Serum thyroid peroxidase antibody concentration (XabCy) 35 kU/L [0 - 60]

Serum free T4 level (XaERr) 13.3 pmol/L [11 - 22.6]

T4 and antibodies seem okay, but TSH looks to be heading in the wrong direction. At what point can I moan relentlessly until someone listens? Oh, it's also in the family. My Mum was diagnosed at about my age.

Thanks in advance to anyone who knows more about this than me.

[J972]

Hello,

Welcome to the forum.

What time of day were these tests done? And had you eaten or drunk anything other than water beforehand?

Those results, coupled with your symptoms (& family history) would suggest that your thyroid is struggling. To gain a better insight you really need to get your FT3 tested - this is the active hormone and gives a better understanding of what is happening at a cellular level. Only problem is, your GP won’t usually test for it so you have to get it done privately. Fortunately, there’s a slew of companies providing such tests. These are currently the cheapest:

randoxhealth.com/en-GB/at-h...

And there’s this company, which uses NHS labs and they have 20% off for a limited time MMHJAN20:

monitormyhealth.org.uk/thyr...

It’s important to do the test as close to 9am as possible as this will give the highest TSH - which is important for securing a diagnosis. Also, always make sure that you are not supplementing with biotin for a week or so before any blood test - it can skew the results.

[Taddo12 in reply to J972]

Thank you so much for such a helpful response. Both of these tests were done early. I have no idea what biotin is!

[J972 in reply to Taddo12]

Ha, it’s a vitamin. It’s commonly found in multi vitamins so if you take anything like that (& the advice in general on this site is that you shouldn’t) then check the ingredients before testing. 😊

[greygoose in reply to J972]

To gain a better insight you really need to get your FT3 tested - this is the active hormone and gives a better understanding of what is happening at a cellular level.

Well, no, it doesn't, actually. A blood test just tests what is in the blood. We can have no idea about how much is getting into the cells except by symptoms. But, it is important to get the FT3 tested.

[J972 in reply to greygoose]

Thanks for the clarification GG 🙌🏼

[greygoose in reply to J972]

You're welcome.

[SovietSong]

Your T4 is only around 20% through range and it's recommended on here that TSH be under 1.Your T3 is likely to be low also which is what causes your symptoms.As someone else commented it could be worthwhile ordering a test from Monitor My Health using the 20% off code while the offer lasts.I ordered one this morning just over £25.

[Taddo12 in reply to SovietSong]

Thank you so much. I will do that. Do GPs generally take any notice of these test at home kits?

[SovietSong in reply to Taddo12]

My GP doesn't know anything about me home testing or self medicating.Dont get me wrong I go to GP for anything else but thyroid issues I find a waste of time.They are uneducated on it and only go by TSH.I would still take the results and go armed with as much info as possible from on here.

[J972 in reply to SovietSong]

Out of interest, what were your results prior to self-medicating? It’s something that I’ve always wondered about (not yours in particular, that’d be a bit weird 🥴)?

Thanks

[SovietSong in reply to J972]

Yes of course J972, the last time I had tests through GP my TSH was 8.07 I think.He had dropped me from 150 to 100 levo daily but wouldn't increase again as TSH wasn't over 10.After advice on here I slowly increased by myself before adding a little T3 just over 3 weeks ago(my T3 would barely go over 50% on Levo alone).My TSH before starting T3 was 0.09.I will retest in few weeks to see where adding T3 has put my numbers.

[J972 in reply to SovietSong]

Thank you, that’s very interesting 🤗

[Hedgeree in reply to Taddo12]

Hi Taddo12,

From my reading on the forum some GP's will take note of home blood tests though many won't. My surgery won't consider them at all. Though at the minimum it may get a GP to action NHS blood tests if your private ones show anything of concern.

[SlowDragon Administrator]

Absolutely essential to test vitamin D, folate, B12 and ferritin levels as well

As discussed in this post

healthunlocked.com/thyroidu...

Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

NHS won’t test TG antibodies unless TPO antibodies are high

You would need to test privately

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/testing/thyro...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/signs-and-sym...

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

[Taddo12 in reply to SlowDragon]

Thank you so much all of you for such comprehensive replies. I feel a lot better now!

[Taddo12 in reply to Taddo12]

My ferritin was tested in my original blood test and came back normal. I'll look into the others.

[serenfach]

If the GP is snotty about the private testing, point out that most blood tests in the NHS are now done by private companies. Also if the NHS did the correct tests, the private home tests would not exist!

[Taddo12 in reply to serenfach]

Thank you, serenfach. I phoned my GP this morning and was told I’d need to do yet another blood test in 3 months because I’m still borderline. I asked them if they were happy about me self-medicating with copious quantities of wine to stave off insomnia for the next 3 months. I also told them it was familial and I’d come to them for assistance since I have been symptomatic and struggling for ages. I don’t know why they make this so hard. It’s like they want us to feel ill. I wouldn’t be complaining if I felt well.