Thyroid test results help please

[JanVic]

Hi, I am very new to this site and I hope I can get some advice please. I have had an under active thyroid for nearly 30 years, I am 63 now, and have been on different levels of prescribed thyroxine since then. Always been up and down and never felt totally well, I was referred to an Endocrinologist in our area, Gloucestershire 2 years ago, after I insisted that my local GP should, she had told me there was nothing more they could give me other than Thyroxine and suggested taking a few sneaky extra pills..!! I was prescribed T3 and have been taking it ever since, I have felt better and was told that my levels were normal with no further action since. Earlier this year I had a letter from my practice telling me that my T3 being looked at and the chances were it would be stopped. They then called me for a blood test, I had a call from the surgery yesterday to say that my test results were abnormal and that I needed to speak to a GP, I am in Spain at the minute but a call has been set up for my return 8th Oct. my test results are

TSH 0.05 T4 18.1 T3 5

I have never been given my test results before and only because I asked for them. I am wondering what my next step is as I am sure they will stop my T3. I am going to contact my Endocrinologist and I am considering a private blood test. But is there anything else I should or could be doing. I realise this is a very long winded post and I appreciate any help given. Many thanks.

[Treepie]

You need the ranges for your results ,guessing that T4 and T3 are within range the low TSH is not a problem especially as you are taking T3.

There have been many recent posts about CCGs stopping T3 but respondents have been giving advice as to how to challenge .

Some will give you an answer otherwise use the search facility.

[JanVic in reply to Treepie]

Thank you Treepie, the problem I have is I don’t know what the ranges are that are normal, which is why I posted on here, these are the results as given to me by my GP’s receptionist over the phone telling me they were abnormal, if I hadn’t asked for the results, she would not have given them to me. I have a telephone appt which a GP from the practice to discuss them and have now booked an appt with my Endocrinologist on the 17th October, I was hoping to be able to talk to them about the results with some confidence and to be able to understand what they are saying, I realise I may come across as being a bit thick, but as a newcomer to this site I am really unsure of how to navigate it. I am currently taking 100mcg Levothyroxcine and 20mcg of Liothyronine daily.

[SlowDragon Administrator in reply to JanVic]

When you are back home

You are legally entitled to printed copies of your blood test results and ranges.

UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need enhanced access to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up. They can no longer charge for printing out, rules changed after May 25th 2018

Your results are NOT abnormal if FT3 and FT4 are both within range. TSH is always low when on T3

They are just trying to bully you off T3

If you are prescribed T3 after initially seeing an NHS endocrinologist, then you should NOT have T3 prescription stopped

british-thyroid-association...

Suggest you get DIO2 gene test as this is strong evidence of needing T3, assuming you test positive

It takes 15 days to process

See also lots of helpful info and letter templates on Improve Thyroid Treatment campaign on Facebook

It's entirely budget driven

theyworkforyou.com/search/?...

[JanVic in reply to SlowDragon]

Thank you SlowDragon that’s all really helpful, I will ask for copies of blood test results and will ask about a D102 gene test, is this something my Endocrinologist could help with ?, if I have to have it done privately I will, I really can’t go back to feeling the way I did before I started on the T3. Really appreciate your help.

[SlowDragon Administrator in reply to JanVic]

There’s one NHS endocrine Centre in Kent that does offer DIO2 gene test on NHS and guarantees T3 if you test positive

But not aware of any other NHS endo doing so

Suggest you could ask them to do it!

If you don’t ask....you don’t get

Personally I did it on the quite privately incase it was negative... but it was positive

It helped my successful argument for NHS funding after initial 3 months trial last year. More on my profile

[JanVic in reply to SlowDragon]

Think I will see if I can get it done privately then.. makes sense.

[Treepie in reply to JanVic]

The ranges are shown in brackets after the result ,suggest you chase the receptionist for them.The problem is that labs have different machines and the ranges may be different. It is important to know where you are in the range.

I assume the low TSH is what has spooked the medics but as slow dragon says it is not a problem if on T3 and FT4/FT3 are in range.

[JanVic in reply to Treepie]

I have asked for the results to be made available to me. I do see what you mean, and I am really greatful for any advice.

[silverfox7]

If you are taking T3 then your TSH is supposed to be suppressed! FT4 can fall in its range but FT3 should be high in the range but never over. My TSH is 0.01

[JanVic in reply to silverfox7]

Thank you, all of this information is really helpful and very much appreciated, my plan after I have had my telephone appt with Dr and appt at hospital with Endocrinologist is to get blood and Gene test done.. but at least now I feel I have something to go on now, I was feeling pretty lost and fed up with all all before.