Visit to Endo coming up - how to prepare

[foreversummer]

Hi all

I have I my first visit to an NHS Endo mid-October, and I'm wondering if I should ask my surgery to do up-to-date thyroid blood tests before I go - the last ones were taken 3 months ago.

What I want to avoid is him/her saying they need to take bloods on my first visit and then me having to wait weeks again for another appointment to discuss. Does this sound like a reasonable plan or is he/she going want to do their own tests anyway?

I'm pretty sure that they won't provide the T3 I believe I need, although I will put up a case for it. However, just don't want to string it out for any longer than necessary as I feel shocking at present and will self-medicate.

Would be interested in anyone's experience of the first appointment and what happened.

Foreversummer

[shaws]

I would much prefer to have up-to-date tests to give to the Endo. Of course, we all know that T3 is now not to be prescribed and only levothyroxine. Levo can be a death knell to those for whom it doesn't work: doesn't improve their symptoms: maybe have even more disabling symptoms.

Why the Association refuse to admit that there are some people who do not improve on levothyroxine and they must get many patients that tell them this but they refuse to believe and some seem to not care that the patient is desperate for help/advice and an alternative or addition of T3.

Our bodies are different and a dose that would suit one person wont suit another who may need three or four times as much in order function.

You can tell them (they are probably completely unaware of this phenomenon) that some people have Thyroid Hormone Resistance and only T3 alone will resolve their symptoms and probably need higher doses to do so.

web.archive.org/web/2010103...

[foreversummer in reply to shaws]

Thanks Shaws.

I've though about this appointment a lot and I was in two minds whether it was even worth keeping it or not.

I've decided that I've got to go in with a positive frame of mind and give him or her every chance to help me. I will however be armed with all the information I need to argue my point and I'm not going to sit there like a lame duck which is what I would have done a few years ago.

And lord help him/her if they're one of those who sit and stare at the computer screen! I'm not having that.

I will ask my doctor to test TSH, FT4 and FT3 before I go.

Thanks Shaws

[shaws in reply to foreversummer]

Most times the GP and or lab will only do TSH and T4 but I hope they test what you want. If not, you can get the FT4 and FT3 privately from one of our private labs - a home pin-prick test.

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

[shaws in reply to foreversummer]

Good luck.

[Gr8Nica]

Hi foreversummer,

In general when your doctor is referring you to endocrinologist or any other specialist you supposed to receive a letter from the clinic/hospital you'll be visiting. Inside that letter you should have information about when, with who and where will be your appointment held.

Usually with a new referral they should attach a Combined Pathology Request Form which you need to take to their outpatient blood clinic so then they can draw your blood. If the appointment is being held in the hospital then as a general rule min. 2 days before the appointment's date.

It's possible your GP have sent your latest blood tests altogether with his/hers referral request but I wouldn't count on it.

In a case if you did not get that form you should go to your GP and request a new full thyroid blood test and ask for the results to be send or request a printout of it and take it to the endocrinologist.

[foreversummer in reply to Gr8Nica]

Thank you Gr8Nica.

I didn't get a form with my letter so I've just rung the hospital and they said that I should have up-to-date blood tests prior to the appointment no older than 3 months.

I will therefore contact my doctor and request a blood draw a couple of weeks before.

Many thanks.

Foreversummer

[Gr8Nica in reply to foreversummer]

I would suggest to also grab all older test results so you can show them that despite each dose increase your FT3 hasn't risen much which would indicate conversion issue. Push them hard.

And if you can bring strong minded person along so they can't intimate you.

[foreversummer in reply to Gr8Nica]

Thank you. Yes, I certainly will.

I have written a letter to my doctor today explaining that I need up-to-date blood tests prior to the appointment and I've stressed the importance of the FT3 test as I believe low T3 is causing my symptoms. I thought I'd putting it in writing rather than trusting it over the phone via a receptionist. I plan on getting the blood draw next week and if anything is missing I've still got time to get them done, and if push comes to shove I'll get them done privately. But I'm determined to get there fully-prepared.

Foreversummer

[Shelley1954]

I would get an uptodate test. My first visit to an endo my GP told me to list every symptom and rate it out of 1-10. The endo liked this and in follow up meetings I had to up date the scores to see how T3 was working or not. Even though I gave him new blood test results for each visit, after our discussion he always had fresh tests done.

[foreversummer in reply to Shelley1954]

Thank you Shelley1954.

That's a very good idea and not one I would have thought of. Very useful to keep as a record of how you are feeling at different doses as well so could come in useful in the future.

Foreversummer

[Bluecat101]

l always have my own list of symptoms over decades to take, but now have been advised to post a copy 2 weeks before - to Consultant