but the GP who rang me this morning for your telephone consultation was fabulous!
Basically my TSH has risen to 2 (0.3 - 5.5) and I am very symptomatic. Only my TSH was tested because apparently the lab only tests TSH for patients on Levo, not ft4.
She started by saying she was horrified that the lab would only test TSH and immediately offered to arrange for me to have a ft4 test. We talked about TSH only being a pituitory hormone and did not give the full picture on its own. I told her that I know I am currently undermedicated by my symptoms alone. I asked her if she was onboard in understanding that patients have a very personal range where they feel well and she agreed that the current range is far too wide.
I asked her if I could have an increase immediately and she asked me how much I thought would be good. I said that I would like to have 25mcg every other day because I have discovered that small amounts can make a huge difference to me. She said that she would be guided by me and would go along with that. Wow! I said that I was quite happy to wait and have TSH and ft4 in six weeks time. She confirmed my current dose and I had to confess that I had raised it to 100mcgs eighteen months ago off my own bat. She said that she is happy for me to, wait for it . . . dose by my symptoms but they should really always be aware of what dose I am taking!
She then said that they don't see me very often at the doctors, apart from thyroid issues, and therefore to always be aware that not everything will always be related to thyroid, she wouldn't want me to miss anything untoward.
I'm happy!
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That's fabulous news - where did she do her medical training? Wherever it is maybe we should propose that all doctors spend a period of training there.
Yes Shaws. I thought I was ready to get a telling off for increasing my dose myself 18 months ago so it feels good. I thought I was going to get told off! You could have probably knocked me over with a feather!
Thanks for posting that positive story - it is fundamentally good.
My reservations are along these lines:
We as ignorant patients, most obviously those who had absolutely no understanding of thyroid before being hit with it one way or another, had not the least idea what tests labs will or won't do. Not even what the tests might be used for, the rationale for the testing regime, or anything.
Through those years we are forced to rely on the doctors, and very largely the GPs, to act on our behalf in fighting for appropriate testing regimes. Yet, somehow, they have not done so. They have allowed the situation to develop in which the lab is all too often the decision maker.
In my view, every test that is ever requested by a doctor should produce either a proper result or a specific "we couldn't do that test because...". There should never be a test request that simply gets ignored. (Of course, sometimes that will be "the sample was spoiled" or "we have not got the technology for doing this test".)
The GP here should not have been horrified that the system she is working in is failing to test properly. She should have known. As should her colleagues going back many years.
I totally agree with you. It can never be right that a lab overrides a doctor's request for a test, presumably on cost grounds, but on any grounds whatsoever. I am greatly saddened that my local lab has decided not to test ft4 for patients on levo. We all know that is absolutely crazy. The doctors do need to fight back and they are guilty of letting this happen in the first place. Surely it's not only thyroid tests that this happens with, I'm assuming it happens across the board of illnesses?
My triumph yesterday is minor compared to the shoddy treatment that we receive overall. The mere fact that we have to arm ourselves with so much info to fight our corner is quite plainly wrong. For anyone not in a position to do so will be fobbed off with inadequate replacement for years and we see this all the time of here, people who have suffered needlessly for years.
My minor triumph does not of course take into account that I have never been tested for T3. I have asked before and told that the lab does not do it. They are even less likely to do it now. We we are going backwards here. Thankfully, I do feel very well on Levo if I am a sufficient dose. And there's the issue so many people are not and they continue to suffer.
I'm not sure I read that correctly. Are you saying that when a doctor asks for a test someone employed to carry out the test decides unilaterally not to do it?
Is this in the UK?
I live in France, and I'm in the French system, although because my husband has a UK pension the bill is actually paid by the UK. I never actually have to pay anything up front except for GP visits, which are repaid partly by social security and partly by a top up insurance (65% 35%). Anything major is 100% covered by social security, and medications are covered in variable proportions, ranging from 100%ss to 15%ss. The expensive and essential ones are at 100%.
The labs do the tests they are asked to do, they take the number of my medical card and my insurance, I get the results on line, usually next day, so does my doctor.
If I didn't have enough income to pay the top up it would be paid for on a means tested basis.
I have NEVER heard of anyone being refused treatment if they couldn't pay. Sometimes there is a lot of paperwork to do, and street people often end up in free clinics rather than do the paper trail.
But because the labs are independent, it is in their interest to comply. Because if they don't, I will take my veins somewhere else....
I have personally seen test requests for TSH, FT4 and FT3. Results came back for TSH and FT4 but not FT3. No explanation. Requesting GP perplexed.
We have read of many broadly similar cases where the lab simply doesn't do the test. There will inevitably be situations in which the lab might refuse to do a test, be unable to do a test, or even does additional tests without another request. In my view, ALL of these should produce a formal response from the lab in explanation. Where sensible, the requester should be given the opportunity to insist or request an alternative.
Oh yes. No problem. They always give you a slip of paper telling you when you can collect your results, and if one has to be send away, they tell you the aprox time it will take, and the result will be posted to you.
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My GP said my FT4 was in range so I don’t need a dose increase
Another battle
Should I add T3 or wait and see?
It's a constant battle with my GP!
Ongoing T4/T3 battle - latest results
