Copies of results

[Bubble89]

Hi all

I posted earlier this year looking for some support and a confidence boost after years of symptoms that were having a massive impact on my life, despite repeatedly being told everything was ‘normal’.

I really appreciated your responses, they really helped a lot. Unfortunately shortly after I posted I became really unwell, and the last few months have been a bit over whelming so I haven't updated since.

Around Christmas I had started with a pain in my upper right abdomen. The area felt bruised and sore to the touch. This had happened before but was never explained despite a scan. It continued to get worse this time and I’ve had scans which have shown I have an enlarged liver, which they have said is mildly fatty. They aren’t sure this explains my pain though so am being referred to a specialist.

Around the same time I started having chronic heart palpitations and dizzy spells, and for a period of around 10 days had a resting heart rate of 110-120bpm. They agreed this wasn’t normal but weren’t able to explain it and it has now calmed down again. Again, the periods of palpitations have happened before. This time was particularly scary though, I must admit.

The support on the forum has given me the boost I needed to start advocating for myself again, so when I went in for my scan results this week I directly asked about my thyroid, and was told my ‘T4 was fine’. I think I finally hit breaking point, and requested copies of my last 4 years worth of tests to see what had actually been done.

They have shown that despite complaining of feeling awful, and having god knows how many appointments and bloods done in that time, they’ve checked my TSH 4 times. They’ve never checked my T3.

In early 2014 my TSH was 2.65 (0.6-4.2) which was interesting as that’s around the time I was starting to feel quite unwell), with T4 16.4(12.5-20.5). At the end of 2014 it looks like they redid TSH on its own and it was 3.03(0.6-4.2).

There were no tests in 2015 as that was the period where I seemed to have a complete reversal of my symptoms and I suddenly felt well. They didn’t test my TSH again until December 17, where it was 6.41(0.27-4.2), but apparently only did TSH on its own at that point.

The next results I have are from febuary this year, where TSH was 4.38(0.27-4.2), and T4 was 17(12-22). In febuary they also tested Ferritin which was 33(13-150).

I’m at a complete loss as to why they have never tested my T3. I’m frustrated that I didn’t feel able to challenge them on it sooner, but I just couldn’t. Repeatedly being told it was in my head really ate away at me.

I know I need to request a T3 year now, and I’m guessing antibodies and vitamins etc. Does anyone have any experiences of Ferritin? From the brief reading I’ve done I’m thinking this level looks lower than it could be, though I fully expect to be told that it’s ‘nothing to worry about’.

My mum is going to my next appointment with nevfor moral support. Time to get this sorted I think!

[shaws Administrator]

I am sorry you've had a rough time for quite a while. In the UK, it is rare for T3 or FT3 to be tested. I believe they only do the TSH and T4 which doesn't really give information about the only Active Thyroid Hormone which is T3.

In the UK those patients who had T3 prescribed had it withdrawn without notice by doctors and endocrinologists as it had shot up in price to around £600 per month.

Researchers have shown that many do better on a combination of T3/T4.

Because doctors are mainly ignorant about anything hypothyroid they believe it is easy just to look at the TSH. The fact is that in other countries we are diagnosed when it reaches 3+ but in the UK, for some very unknown reason the 'authorities' thought of a number. and seemed to pull it out of a hat. that it should reach 10 before we are diagnosed, whilst ignoring clinical symptoms and some are very disabling, especially if pain and some patients have lost their jobs as they couldn't think straight.

T4 - levothyroxine is an inactive hormone and it's job is to convert to T3 - liothyronine which is the only Active Thyroid Hormone needed in our millions of T3 receptor cells. I doubt any doctor is aware that we have thyroid hormone receptor cells that need T3 hormones.

All blood tests for thyroid hormones have to be at the very earliest, fasting (you can drink water) and allow a gap of 24 hours if you were taking thyroid hormones (levothyroxine is all that is prescribed in the UK) and a blood test. TSH is all the seem to look at and they believe if it is somewhere in range that's fine but we need it to be around 1 or lower. We also need FT4 and FT3 (rarely tested) nearer the top part of the range.

Request, TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.

You also need B12, Vit D, iron, ferritin and folate tested too. Deficiencies can cause symptoms.

Get a print-out of your results, with the ranges and put them on a fresh post. You can also tick off your symptoms in the link below and give to GP. plus another which should be of interest.

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/testin...

[SlowDragon Administrator]

For full evaluation you need TSH, FT4 and FT3 plus both TPO and TG antibodies

Plus you need ferritin, folate, B12 and vitamin D tested

NHS often refuse to test FT3 (apparently too expensive- apparently it costs NHS 92p to test FT3)

[Bubble89]

Thanks very much both. I’m making an appointment with a new gp tomorrow and I’m going armed with all my notes and some support from my mum. If I can’t get the tests I need after speaking to them I’m going to get a panel done by Medichecks. I live in the Channel Islands and we aren’t under NHS so I’m hopeful I might be able to get done labs at least, we’re paying enough for them!

I’ll report back once I have done new info. Thankyou!