Finally!: I've finally been diagnosed with... - Thyroid UK

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Finally!

brightredracer profile image
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I've finally been diagnosed with Hashimoto's after 12 years. Of course not by an NHS doctor, but because I went to see a private doctor after months and months of fatigue caused by glandular fever. Visiting the private doctor spurred me to get a panel of thyroid tests done and bingo, there it is antibodies at 179.5 IU/ml. Please bear in mind that I have been gluten free for 3 years anyway, I supplement with B vitamins and multivitamins too.

I am worried about seeing my NHS gp with the results, they are so dismissive, but I must as I have never been offered an endo and I suspect this is the moment to insist. I had also never been tested for free T3 or had my thyroid gland felt either in the 12 years since being told I had hypothyroidism, now these things have been done I want better treatment full stop. So any advice would be very gratefully received, as I have long read your posts and have learned so much from them!

Lucinda

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brightredracer
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8 Replies
puncturedbicycle profile image
puncturedbicycle

This is a problem for so many people. We either get better at insisting or we find someone we feel we can work with or some combination of the two.

May I ask what your other thyroid results were on the private test? They may indicate that you're undertreated and this is why you're so tired, in addition to your issues with glandular fever.

I'm a little confused about your diagnosis. You were diagnosed 12 years ago with hypothyroidism but they didn't do an antibodies test? And you've been treated with levo all this time? So you've just had a private antibodies test which confirms that you have Hashi's?

brightredracer profile image
brightredracer in reply topuncturedbicycle

Hello Puncturedbicycle,

Yes, I was diagnosed 12 years ago with hypothyroisim and no antibody test was ever done. I have been treated with Levo all this time and only just had enough in the way of finances to see a private doctor and get the full panel of thyroid tests done . My results were :-

Total thyroxine (T4) - 118 nmol/L

brightredracer profile image
brightredracer in reply tobrightredracer

Excuse me that posted earlier than I intended when I pressed the tab button!

So again :-

total thyroxine (T4) - 118 nmol/L range 59 - 154

TSH 3.34 Miu/L range 0.27 - 4.2

Free Thyroxine 16.3 pmol/L range 12.0 - 22.0

Free T3 4.2 pmol/L range 3.1 - 6.8

Thyroglobulin Antibody 179.5 IU/ML range 0- 115 (Negative)

Thyroid Peroxidase antibodies 10.2 IU/ML range 0 - 34

I hope that helps,

Lucinda

shaws profile image
shawsAdministrator

You are obviously not on sufficient levothyroxine with a TSH of 3.34. No wonder you feel bad. Someone who is more knowledgeable will respond re your other blood test results.

The nhs will not care about your antibodies. I also thought it would be a major revelation to them. Hypo since 06. took a private test in 2012 to evidence Hashimoto's. Marched in with private test and the nhs gp's response was 'so what?'. said it would not change the way they(mis) managed the disease and he would not refer me to an endo. So please do not get your hopes up. Nhs does not differentiate between cause of hypo. All they do is act on tsh, it is irrelevant to them whether your hypo is autoimmune in origin.

Sadly I fear Blue Daff is quite right. Why not go back to your private doctor and see what s/he suggests?

brightredracer profile image
brightredracer

Wow, that is wholly depressing. I have a doctors appointment with the nhs doctor in a few weeks and I'm going to go and give it a try to get an endo, even if it's unlikely. I cant really go back to the private doctor as it costs rather too much, but I do need to improve my health generally as I am starting a full time job in a few months. I already supplement with B vits and a basic multivitamin and the private doctor recommended more exercise generally to improve my immune system, which makes sense.

In short, I will go and try, plus keep working on overall health!

Thanks all!

Lucinda

brightredracer profile image
brightredracer

I can confirm that I have an endo referral and an increase in T4! I went to see the most popular NHS gp at my surgery (on the grounds that they were likely to be the best one available) and it was so worth the two week wait!! I can completely recommend going armed with information and results to the best GP at the practice. Next stage Endo! Thank you everyone for your help. xxxx

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