Hashi's

[Danyell]

I've just been looking through my results and notes that I have had from the hospital/gp surgery and not one letter states that I now have Hashimotos. I've requested the actual figures for my antibody test fromonths back and they just won't give me them! I've had confirmation to say they are 'highly positive'. Can anyone shed me some light on why I'm getting treated this way?! Good job I'm being my own advocate from now on but I do want to have a note on all my results!

[RedApple Administrator]

Danyell, medics in the UK generally don't use the term Hashimotos.

At best, with an over range antibody count, you might get a diagnosis that mentions 'autoimmune' thyroid disease. But more commonly your records will just show hypothyroidism as the diagnosis.

[motherelle]

By law you have the right to a print out of your results ,you may have to pay a small surcharge if they are being numpties . It's just another of the battles we have to fight with the medics . Good luck !!

[Jose651]

Last week when I politely asked for a print out of my recent blood tests the receptionist said "what do you want them for?" I really felt like saying, Oh I can't afford toilet tissue. It is unbelievable.

Jose651 x

[helvella Administrator Thyroid UK in reply to Jose651]

Just to be clear to anyone who is not aware, there is absolutely no need to give ANY reason.

If you feel it easier to mumble "For my records", or similar, fine. But if you'd rather say "What's it got to do with you?" (said politely, with a sickly patronising smile, of course), you'd have my support.

[Danyell]

Ahh I see, thanks for that info red apple. I've so much to learn it seems!

[shaws Administrator in reply to Danyell]

We are entitled by law to have a copy of our results. Receptionists have no right to ask although I must admit I never asked before I got hypo but we have to if we want to recover our health and have to read a lot of stuff as well.

Neither should receptionists ask why we want a copy nor tell us results are 'normal' particularly if we feel anything but normal. Some surgeries request a nominal sum for paper/ink. When you next see your doctor tell him/her that you'd like a copy of each blood test from now on.

RedApple is right with hashimoto's - you have an Autoimmune Thyroid Disease because you have antibodies. Excerpt:

Hashimoto's disease should more properly be called chronic immune thyroiditis, and can be detected chemically by the presence of antibodies, the rise in TSH, and low blood levels of thyroid hormones. Where the TSH rises, but the thyroid hormone levels remain in range, the condition can be called subclinical hypothyroidism. It is worth noting that the antibody levels may diminish as hypothyroidism becomes established, or where treatment with thyroxine is given.

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

[Achilles_Pain]

If you are in the UK sign up at your Practise for "PatientAccess" and make sure they enable your settings to enable you to see your test results. They are all there right back to your first test and you can print them out yourself, and there's even an option to print all the results in graphical form. That way you don't need to ask, you just go online and look. It's an NHS system so there's no cost, you don't pay anything for it.

[helvella Administrator Thyroid UK in reply to Achilles_Pain]

Achilles_Pain,

I am in the UK - even in England. I am signed up for Patient Access and have been for many months. I cannot see my results.

My last two repeat prescription requests through Patient Access have both been messed up (one was prepared but never got further, the next one apparently isn't even visible to them on the system).

While trying to get the repeat issue resolved I did ask about accessing test results - got a very "Ooo - you don't expect that here do you? We're way behind." sort-of answer.

It is good to know that some people get the access we are supposed to have!

[Achilles_Pain]

It's not the practise which owns the system, it's the NHS, but the practise needs to enable your settings. At first when given access I couldn't see my test results and the receptionist couldn't enable it because the tick box was disabled (I'm clicking it, but it won't work") She asked a practise nurse who told her to click the box again, which didn't work. They then found another box on the right hand side of the screen (Partial results, I think they called it?), which then enabled the other box on the left hand side of the screen to be ticked. I can now see all my test results. Next time you're in there ask them to try again.

[helvella Administrator Thyroid UK in reply to Achilles_Pain]

I do my level best to go there as infrequently as possible. But will try again soon.

When I first got put onto Patient Access it took weeks to be able to log into it. Eventually they did work out how!

And I love the messaging mechanism. They appear never to respond to anything - my "account" has a series of "Has anyone read this?" messages because I assumed they wouldn't be. They weren't.

[crimple]

Danyell, I was firstly diagnosed hypo and took my levo as prescibed and asked no questions for about 5years. Then my life went "pear shaped" due to medication that didn't deliver the dose as stated (TEVA) they had their licence withdrawn!! My TSH yo yoed massively after that, then my health improved for a while. 2 years ago I became very unwell and thanks to help and advice from this site I asked for TPO antibody test. It was positive and reading was high.

GP contacted the local endo and was told their was no need to do anything!! I was not happy with that and with further help from here and by reading several books I went gluten free and lacto free. I got rid of the TPO's within a year and felt a lot better.

Yes, I had/have hashimotos but as far as the NHS is concerned they don't treat it, it doesn't exist because they don't know what to do with us. Give it a name and you have to treat it!!!

Hope you get some answers and make some progress with DIY NHS!!!