Last time I tried this, I felt better for a couple of weeks, then went down hill pretty quick. This time I have to stay off all meds for about 4 weeks - just hoping I don't end up virtually housebound again 
I am actually interested to see the test results though as far as how my thyroid is working.
Have no idea what the TRH test will show but in preparation for it being 'normal', just wondering if anyone might message me with how to get T3 for myself?
Hi Den,
Have PM'd you and I'm so sorry to hear you are having such an awful time. What is a TRH test?
Moggie x
Hi Moggie
Have Pm'd you back lol. Hope you're feeling better. Good explanations of the TRH test are below 
X x
Are you going to take anyone with you as it doesn't sound very pleasant - especially the dizziness etc. Are you going to be able to drive afterwards? You really have been through the mill over the past year haven't you Den - lets hope that this test will finally show your endo some answers - although I cant believe that YOU had to suggest the test to HIM, what are these people getting paid for.
When is it booked for Den and how are you feeling with no meds?
Moggie x
I hadn't really thought about it to be honest Moggie, I usually go by myself. Maybe I'll get a friend to come too
Haha, we should expect nothing less than advising our docs these days! lol
Don't have an actual booking yet, I believe they're still trying to get the substance to do it with but have said by the time I've had no thyroid meds for 3/4 weeks they'll have it and will get back to me with an appointment, hopefully around the 24th??
It's only been since yesterday but I'm already noticing some symptoms getting worse, probably the missing T3, no doubt I'll feel worse as the T4 leaves my system too Very tired and more achey than I've been in a while but determined to get through it.
That's why after this test I think I'm done with docs if nothing shows, had enough now, 3 years worth of being all over the place, with tests and meds. Think I'm just going to try T3 only, so thank fully have you guys when I have questions(although I know it's no substitute for the docs 
)
How are you Moggie? X x
So so Den, Have only just got over one bug and have now gone down with a sickness bug - just feel so drained all the time. Like you I am getting fed up with endless tests and appts, but I suppose we need to count ourselves lucky as some people on here have endo's and GP's that do nothing at all, even though the person is obviously very ill.
I really do wish you well with this Den, having this done just shows how desperate you are to feel well again. Contact me before you go in wont you.
Moggie x
Oh no Moggie, you've had such an awful time too. Hope you feel some wellness soon.
I know, I do feel privileged to have gotten all these tests. I have fought hard to get them though as I too was fobbed off and left to it to start with! I tell anyone to try and stand their ground and as far as I can tell, writing letters seems to do the trick and make them take you seriously.
I'll let you know Moggie, thank you.
D x x
I do not envy you one iota!
We do not get many people here even mentioning TRH testing - let alone undergoing not one, but two of them.
For anyone interested this is a brief patient info. leaflet for TRH test:
dundee.ac.uk/medther/tayend...
And this might be of some interest:
ncbi.nlm.nih.gov/pubmed/235...
At some suitable future point, when you have recovered from the whole process, please do post a blog so that we can all know a bit more about it.
All the best
Rod
The TRH test is the thyrotropin releasing hormone test. Thyroid UK thinks this test should be more available for people. TRH is released by the hypothalamus, which stimulates the pituitary to produce TSH. If there is a problem with the hypothalamus, TSH is not produced and therefore patients have low levels of TSH which doctors see and then mistakenly think the patient has enough thyroid hormone.
pathology.leedsth.nhs.uk/dn...
I will let you know how it all goes x
Please do! We want more people to have this test!
This is interesting as I have come across this as part of the research into my husbands health problem. His TSH is low around 2.5, sometimes 1.6 but his FT4 is 9.3 (9-23). Of course this means he has no thyroid problems but his FT4 is dropping each time. His GP is willing to do any test to identify any other issues and this is the one I have come up with. Just need to see if he will do it.
This was the same as me when I was initially diagnosed borderline hypo thyroid. My TSH was around 1.6 I think but my FT4 was 10(range 10 -23).
However after being treated for ages by my endo and him agreeing we would investigate every possibility, he's only just realised this was the case. So when I mentioned the TRH test he said he would do it, although I believe it's hard to get hold of of substance they inject you with.
Definitely should have FT3 tested, mine is also on the lower part of the range(although not as low as FT4), even when taking T3.
I think you would have to see an endo to get the test done, although I'm not totally sure. I hope you can get some answers for your husband! x
He is having his FT3 tested this week to see if it is in the low part of the range too. His is complicated by the fact he is on testosterone shots as his testosterone was really low due to documented testicular damage and because we could prove that they decided to treat him for it. Because of the TSH he is normal. However this time his shots have not had the desired effect so they are investigating potential other causes but like everything thing else, not straight forward. I will say our GP is great though and very open to suggestions which is great.
Sounds like he could have central hypothyroidism. The TRH test could pick this up but also a T3 test would be a good idea.
Yes he is having a T3 test this week. Once we get the results back in we will go and see the GP with all relevant information regarding the TRH test. Any other tests you know that could pick this up. He has had LH, FSH (high due to testicular damage).
Just thought I'd do a quick update on how I'm feeling off meds, although date for TRH has still not been confirmed. I'm now also waiting to hear if planned periodontal surgery and the drugs I will have to take around the same time as TRH test will effect any test results, so may have to cancel - just one thing after another lol
The first couple of days, more tired and achey but then, same as last time off meds felt actually a lot better! Have been feeling pretty good and now in the middle of the second week. This morning however, woke up feeling slightly hungover(without drinking) and a bit achey again. Hoping this is not the start of going downhill, so just going to carry on as usual until I actually can't.
Test result advice & preparation for 1st Endo appt
Blood Test Preparation 
Test results now in
Test Results - now what?
Advised to stop all thyroid meds
