I last saw an endo back in October 2012 and bearing in mind I am supposed to be closely monitored well it is basically rubbish. Last time I attended the woman said I was in range and I walked out after getting rubbish service yet again.
I am hyper with Graves ( although never had an antibodies test or a scan for a goitre) and was diagnosed back in May 2011 and been taking Carbimazole ever since. I have been on a low 5mg dose for about a year.
Although I am supposed to get a copy of every letter sent from my endo to GP, I didn't get one last time. I asked my GP and she let me read what the endo had written. Apparently the endo thinks I am extremely negative and unbalanced. Surely as an endo she should understand the problems that we as hypers suffer especially with moods?
So I am about to sit in a hot waiting room full of diabetic people, being ignored and being asked for urine samples that are not needed as I do not have diabetes, and then having some so called specialist talk to me as though I am 5 years of age and do nothing.
Does this sound like anyone else's experience?
Written by
greenginger
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I also sit around and get to pee in a pot for no apparent reason, and I also am supposed to be 'closely' monitored as 'everyone' is 'so worried' I am still requiring an increase in medication despite taking 160mcg of T3 daily and 1.5 grains of Erfa! yes I last saw the endo last october 2012 and they keep postponing my appointments, first to August 2013, not postponed again to October 2013!!!! I mean that will be ONE YEAR with no follow up, oh well, I do email the endo with rants about needing a higher dosage and he does not budge so went privately to Dr S and am now upping my dosage.
I came out of the Endo sicker than when I went in because they kept me waiting an hour in a germy, flu-ridden waiting room. I'm taking a face mask next time.
When I visited my local NHS Endo clinic it seemed to totally diabetic based.
The last thing people feel like when ill and particularly no energy left is to take on professionals in full tilt mode.
Complaining about this is almost impossible to visualise.
Nobody wants to take on the establishment much- even well well!
Mental health gets second place often enough, as few speak up for them, but there are protocols to help ensure some fairness and there are plenty of historical research and treatments, however imperfect on the day.
We need a similar system with regard to getting attention and resources/training allocated to thyroid problems.
There does seem to be a collusion that the problem doesn't exist -or warrant attention,when we know it does.
Well a quick update. I am now (ahem clears throat, raises eyebrows) "cured". Well I am not really but I am off carbimazole and currently "stable". I have been warned that I may not stay that way, which I know. So I will see how I get on.
On the other subject ( Rubbish Endos.com) I was ushered into a different endos today, after a relatively short wait. I was treated with respect and dignity and the endo ( one of the top dogs) agreed that my care had been lacklustre, disrespectful, poor and not sufficient. He went on to blame funding cuts in the NHS, reception staff, NHS bureaucracy etc etc. Stated that I should have been seen every 3 months as a minimum as hyperthryoidism is a very complex and serious condition. He stated that I should put my complaints in writing and apologised profusely.
I was not fooled. He is obviously the endo that difficult patients get sent to!!! But I will complain anyway as the service was garbage from start to finish.
He also agreed that seeing thyroid patients in a diabetic clinic never works as the nurses are not sufficiently trained.
I also explained that the endos I had previously seen were very poor and had no understanding of the psychological issues that goes hand in hand with the condition and that no support was offered ( ie this site or leaflets or groups or anything). He stated that was a good point and will try to sort that for new patients.
Anyway back in 3 months ( right yeah!!) for blood tests and monitoring.
I don't have to pee in a pot every time, sometimes though. The last time I had to mention to the nurse that I was taking vitamin B supplements because my pee would be bright yellow and not to worry!
Diabetes is seen as more important in general than "easily cured" thyroid issues in my experience. Some endos know little more about thyroid issues than GPs. It would be far better if we saw endos that had specialised into thyroid care.
Yes that seems to be a major factor. Endocrinology is lumped together with diabetes. It needs to be a separate department, even my endo agreed with that>
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GP has been stopped from prescribing my T3 and Clonazepam
Gp says TPO antibodies can never go down!
Parathyroid /calcium levels 
Is it bad for your general health to have your tsh suppressed?
