I can't remember whether you can post an Endo's name, so forgive me if I've broken that rule. I've had a minor breakthrough recently in that I saw one of the GPs in the surgery last Friday and asked again if I could be referred to an Endocrinologist. He said he would refer me and looked me in the face and said he felt that I was going to keep asking, but he warned me that he feels sure the Endo is going to say the same as they all say and not advise any other treatment. But its a step forward. He then told me appointment waiting time is 3 months. So I left a message later at the surgery to ask could I offer to go private to speed things up.
I didn't think the message had got through to the GPs but I had a letter yesterday from a private hospital not too far away with an appointment for 6th September in the morning. So obviously message did get through. While waiting I had been looking through the Endo list at Lister Hospital in Stevenage and having whittled out those who appear to be 'diabetologists' the one name which was left was Dr Felicity Kaplan and weirdly thats who I have the appointment with.
I have googled to find more information on her as I'd really like to talk to her about possible alternatives to Levo (stuck on 75mcg, can't tolerate an increase) and I did find one short post in Health Unlocked from some time ago, but there wasn't a great deal of information. I live near Biggleswade in Bedfordshire, so usually have the option of Bedford or Stevenage (or sometimes Cambridge if I push) but opted for Lister on this occasion. So just wondered if anyone had any experience of this Doctor.
I shall gather together all the information I have including blood test results and hope for the best!
I'm sorry to sound negative but I think your gp is right and the endo will say everything is fine. You have some chance of a levo increase (which you've already tried and it doesn't agree with you) and a small chance of getting a trial of t3, but you could try that yourself. It seems to me looking at your test results that you're not on enough medication and if more levo makes you feel unwell it seems sensible to add in a small amount of t3 and see how you feel. You can either do this yourself (cheap, easy) or you can fight with an endo about it (expensive, exhausting).
Full disclosure: I found the experience of seeing an endo (one who was recommended by another forum user) so disempowering that I'd have to be dealing w cancer or similar to do it again, so I am deffo not neutral on them. They are generally more conservative than gps and many seem very out of touch and/or unconcerned w how their patients feel.
I hate saying stuff like this here because we're all trying to remain hopeful and get well but I do wish I'd known then what I know now and I'd have dispensed w the whole endo nonsense.
Well thanks for your thoughts, a friend in a FB forum said similar, but I feel now that the GP has given in to my request, I shall go through with the appointment, and depending on how it goes, I may mention T3 and see what reaction I get. I did have another Endo in mind who someone from HU kindly recommended, but he was based in Sheffield, 2 hours drive away, so at least this one is only 10 miles.
My husband has been attending a gym locally and made friends with a few people there. He got chatting with a woman who ended up mentioning she had a thyroid issue and she works in London for some sort of clinic where there are Endos. So she's actually been finding out more about them and is going to find out about the one I've been referred to.
What I find most irritating is that when I've seen any of the GPs with anything relating to my stomach (I have Coeliac Disease) they take it all very seriously. Also my late mother had bowel cancer so I'm in a screening programme for that. I had some heart issues and was packed off to a cardiologist (I think thats all thyroid related too) but when it comes to thyroid, its just 'take these and you'll be fine'
So sorry to hear about your mother.
Yes, quite - when I went to the breast clinic (after my mum had bc) they took it all so seriously it really pulled the rug from under me, but my thyroid treatment is more or less off my own back. I've got to the point where I expect to be dismissed straight away for any health problem. Having said that, it is good that they're giving you good treatment re cd. I'm under the impression there are people who have to fight for that too.
I'd love to hear what your husband's gym mate says about her clinic in London. There is the odd place here and there where the doctors do more than just roll their eyes over thyroid problems. I live in hope of finding one! I'm perpetually looking for a doctor who will keep an open mind but not be full of mumbo jumbo (eg kinesiology etc) and apparently this is such a fine line that I've only ever found one, and she is on a different continent (though there are issues there other than distance, I prob won't see her again).
Again I apologise for my negative reply, I have a kind of endo ptsd.
Ha ha the 'endo ptsd' made me giggle
Please don't apologise about the negativity, its good to get any kind of feedback whichever way it is and actually the lady I have befriended on the FB (who is self treating with T3 successfully) said almost the same thing.
Thanks for mentioning my mum but she died over 30 years ago though the thing that goes round in my head about her dying is more to do with her age. She was diagnosed with cancer at about 56 I think and had a piece of her colon removed but fortunately no colostomy. But she became ill a few years later with firstly a ruptured appendix (symptoms were missed) and later further bowel problems which transpired to be further cancer. She went into hospital when she was 63 to have (probably) a colostomy, which I know she hated the idea of, but she died during the operation. Whilst they cited cancer as cause of death, I feel sure she must have had heart failure under anaesthetic.
The reason I'm explaining that part is that when I look back at my mother's health, I do feel that perhaps she had firstly undiagnosed Coeliac disease which if not diagnosed / treated can eventually lead to bowel cancer. But also thinking about her constant wish to be slimmer and being tired, I think she probably had undiagnosed Hypothyroidism too. I have a photograph of my mum in her 50s in a swimsuit on holiday with my (late) dad and its like looking at my own reflection!
But I have two lovely older sisters (one will be 70 in September and has just gained an 'A' for an AS Level Spanish exam!) and the other is 66 so they have gone past the age my mother died. I'm 61 so have 2 years to go to get past the age she died.
You're right about people struggling with Coeliac Diagnosis, I think research says the national average time for being diagnosed from first visiting a GP with problems is something like 13 years! I've actually been diagnosed twice because when I was little, the blood tests and endoscopies weren't around, so at about 18 months old because of my symptoms , it was 'assumed' I had CD and a GF diet was recommended. But also at that time it was assumed to be a childhood illness which you 'grew out of'. Of course science has moved forward hugely since then and it is now known that once diagnosed its GF for life, but in my case I spent from age 6 or 7 through to 25 eating normal food. I had a turbulent teenage time and wonder if that was part of the cause!
Some years ago, they stopped annual reviews for CD because it was a case of turning up to see a very busy consultant and the chat would be 'How are you? / I'm OK / OK, see you next year' but the reviews were reintroduced a few years ago, but done at the GP surgery. A blood test followed 3 weeks later by a chit chat with a dietitian who says 'How are you? / I'm OK / OK see you next year'
But I'd have to say for the most part where CD is concerned, the dietitians aren't very up to speed and last time I asked her about goitrogenic foods too and she had no idea what I was talking about.
I attend the review as they then sign a document which means if I wish I can obtain some GF staples on prescription, but I choose not to use this facility and it is gradually being withdrawn anyway. I buy all my own GF foods as I've found a wonderful artisan bakery in Kent which makes wonderful bread with no additives in.
Sorry this was a bit of an epistle!