Should have blogged about me first endo appt last week but was still digesting the meeting and trying to make sense of it all.
Firstly getting the appt was a battle as, according to my local hosp, an URGENT appt was a two month wait. I phoned up the endo's secretary and practically threatened her with legal action if I ended up in a different hosp on the operating table and things went wrong. Need to back track here and tell people who dont know my story that I was sent to an endo by my anesthetist as he wasn't at all happy about operating on me for an ovarian cyst whilst my "thyroid condition is so unstable".
So after doing battle with the endo's secretary and getting an appt for the next day (amazing what a little gentle persuasion can do.lol) I went along to see him with a sinking heart (I have a major distrust of most NHS staff).
The appt started off on a bad foot when the endo decided to tell me that T3 didn't work (I had been on t3 for over a year and knew differently) so we had a little bit of a disagreement with him telling me I could get a second opinion and that he had made time outside of his normal surgery hours to see me (in other words "how dare you argue with me when I have put myself out to help you"). Further discussions regarding thyroid issues, including fillers in medication, led to a few more clashes of opinion but through it all we managed to come to a mutual understanding, he knew I was no push over and I knew how far to push him before he was likely to order me out of the room.
The outcome of this hour long appt was a shed load of tests from heart and bone scans (went through an early menopause at 42) through to adrenals, which we discussed at length, all vitiamins and many more. He's parting statement to me that "you might end up back on T3" made me smile as an hour before he was telling me it didn't work!!!!
Just a note to make you laugh - I asked him what his views were regarding NDT and he almost hit the roof "you have just been saying that you thought your heart palps could be down to fillers in your T4 and you then ask me about NDT, its the worse form of hormone replacement you can take for fillers. We just dont know whats in the stuff and at what quantities". After letting him rant for a further few minutes I calmly said "well I only wanted your opinion, I wouldn't take NDT as I am a veggie and have been for 20+ years" You should has seen his face, even he had to smile at my cheek.
He sent me, then and there, for a quick ECG and made me hand in my other heart scan form "to save time" and then off I went to have the many blood tests done that he had ordered.
That was 9 days ago and today I have been phoned by the hosp to go and have a short synacthen test done as my adrenal bloods are not looking too healthy. What makes me really annoyed is that I asked my GP over a year ago about adrenal problems and she looked at me like I had two heads, and then did nothing.
All in all I think I have had quite a successful outcome and, at last, I feel that something is being done. I actually like my endo (at the moment, but that could yet change) and feel that he is doing a good job. Is that down to the fact that an anesthatist could see I had a problem? I think it probably is - do I care - no not really, as long as I get sorted I dont give two hoots how and why it came about BUT I do know that if I hadn't stuck up for myself, firstly with the endo's secretary and then him, I dont think I would have faired so well, so my advise to you all on here is to trust your instincts - if you know something isn't right KEEP FIGHTING.
Best wishes to you all.
Moggie x
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Moggie
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It just goes to show how empowered patients can change their own outcome. We need to help other patients become empowered with knowledge about their condition and how to get the best of of GPs and Endos.
Many other specialists I have come into contact with know (anaesthetists, audiologists) about the real issues with thyroid problems, so what is it with Endos?
But what a crying shame for all those people who haven't got the will or the energy to fight. I have always had a fiery personality (I blame the red hair.lol) and been able to stand up for myself, which on many occassions has got me into trouble but is now proving my strongest asset when dealing with the NHS, but I know there are many on here that just can not stand up to a health professional in the way some of us can.
Am now preparing to do battle again today to get all the results of the blood tests that my endo has had done. Usually I would just get the GP's receptionist to print them out but they say that they have not got them so will have to deal with the hospital, which I know they will turn into an issue (god forbid that a patient has her own test result). My main reason for wanting all the results, apart from needing to double check things, is that I am to be put back on high powered 50,000iu VitD tablets which I know contain calcium even though, after getting the endo to actually look at my last high calcium test result, he said he wouldn't give me.
i think that charities like TUK should have template letters for patients to cover situations like this. In my spare "spare" time I am getting such letters together for TUK approval but it is taking longer than I hoped because of my Endo's poor performance.
The NHS Constitution says
You have the right of access to your own health records. These will always be used to manage your treatment in your best interests.
You can see then for free or you can have a copy for a reasonable charge. the maximum charge for health records is £50. A copy of your latest test results should cost around 30p for paper ink/toner and overheads plus a nominal charge for locating the records. this fee is governed by Regulation.
Only had a mini battle in the end. The "freedom of information act" statement did the trick and the endo's secretary is doing copies for me to pick up on Wednesday (she offered to post them but, as I'm at the hosp this week, I'd rather pick them up).
She really didn't like it but what can she do when there is a law in place that states we are entitiled to them.
I'm the same, finally getting the guts to just say what needs to be said, instead of skirting around it. Well probably not guts, just pure frustration and anger!
I'd be interested in you synthacen test, as I'm still waiting to hear when mine is. I know my adrenals are an issue, which is why I think the T3 isn't working as well but I've read the test isn't that accurate, so not sure what to expect.
It doesn't matter WHY you stand up for yourself Den but that you do and that you dont let these, so called, health CARE!!!! workers call all the shots.
Cortisol bloods tests, hmm, well, apparently not accurate. I know of someone who has had long & short synatchens (& other cortisol blood tests), these tests came back "normal" --- guess what? she has addison's disease!. I too have had all these blood tests - all normal apparently, well shall we say within "Range". A range to me is a guide line as to how close or how far away a patient is from the optimum level. (of anything).
Have done Dr Wilson's adrenal questionnaire and came out with moderate to severe adrenal fatigue,(18 months ago) along with eye sensitivity test, sergent's white line, 7 day temperature chart and finally, (privately of course) a saliva test (not accepted by the NHS) ALL of which indicated adrenal fatigue. NOT ONE NHS person is remotely interested. Because of laboured breathing (have the lung capacity of someone 20 yrs my junior) caused by thyroid medication will be referred to Addenbrooks in Cambridge. Many other patients complaining of the same thing, all of whim are on some kind of thyroid meds.
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I've been prescribed NDT! !
Endo prescribed NDT but I have conversion problem so worried it won't work?
There is hope!!
I feel the need to vent my anger
