The best present

[Woochan]

The best present I have had this Christmas has been the improvement in my health. This is the first Christmas day I have been able to truly enjoy for years. Thank you so much to everyone here for you kindness and support over the year. Not just the information and practical advice, but also the moral and emotional support, which kept me going when I had almost given up hope of ever getting better. All my best wishes for Christmas and the year ahead. X

[RedApple Administrator]

That is so good to hear! Thank you Woochan, for taking time out from your Christmas celebrations to come here and post. Your doing so will give hope to those who are still struggling. Here's to 2013 being a fantastic year for you and everyone else here!

[shaws Administrator]

I agree wholeheartedly with RedApple's comment. It is just lovely to feel an improvement in your health.

[Tangles]

Woochan, I'm happy for you that you have been able to enjoy the festivities this year.

I would like to comment on how eloquently you have voiced your thanks to all of those who are involved in this site for thier help and support or even just sharing thier fears or experiences.

I find it amazing on how just a little comment can help in such a big way. Maybe because one thought they where all alone in the misery of thier illness and suddenly there was something or someone to relate to knowing that they understandmuch sooner rather than later what you are going through, a comfort.

Then there is all the help and advice that is given so freely by so many, each knowing what the other is going through and each willing and trying to help the other to feel a bit better.

I too would like to thank each and every one person involved in this site. I have been 'walking in the dark' for the past twenty years and its only on stumbling on this site that I have had some direction on trying to help myself to feel a bit better.

'Hats Off ' to each and everyone involved and I know that whichever way presents itself to me to raise awareness of our illness I will do my utmost to highlight it. If you dont have it you would never be able to understand what it is like to live with it - But methinks that there are many who don't even want to begin to understand it and are quite happy to continue within the confines of the given existing medical texts, cocooned in cotton wool, quite pleased with themselves for administering the given level of Levothyroxine without even listening to the way the patient feels and suffers and reacts to the prescription. You only have to read the many comments on this site to realise the ignorance of the Medical Proffession regarding us.

I know thier are many working so hard to try and change this attitude and indeed the given boundaries that defines our illness. I wish them well and thank them and hope that thier voices are heared much sooner rather than later.

Thank you all,

Annie x

[shaws Administrator in reply to Tangles]

Hi Annie,

I too have to give thanks to ThyroidUK . When first diagnosed you expect to feel reasonably well when first put on levothyroxine - after a while you don't understand why you feel even worse and are told 'your blood levels are fine' (so in theory it is something other than hypo).

It is only through sites like ThyroidUK that you realise there may be something else which is available and may suit , but which we are not even allowed to trial. I think that's the worst thing. You are then forced to go private (and for many it is not within their budgets to do). It took me a while to find a combination which works but GP wont prescribe so have to purchase myself

I do feel for people suffering unnecessarily because of the guidelines to Endocrinologists/GP's and for those whose appointments are disastrous due to

unsympathetic medical personnel.

[Hidden]

Always nice to hear good news! Well done on getting your health back.

[despair1]

I absolutely echo the comments about support. Just when I thought I was alone I found this site and just having good wishes sent me makes you realise that people are listening. Maybe not the medics but other people like us. And then one of us (Woothan) gets the right treatment and gets better, so there is a light at the end of the tunnel. There is hope for is all and may it happen in 2013.

Also....From reading advice from others I bought Dr. Toft's book and have a page earmarked for my next doc's visit. I also found out what the rash is and the treatment needed. Meanwhile I would like to share about my rash. I was recommended on this site petroleum jelly which seals the rash off from the air. I did not have any but did have some Metanium ointment left over from when one of my kids visited with their brood. It is nappy rash ointment and is rather like the stuff skiers put on their noses. Contains titanium dioxide but is yellow. It effectively seals the area off from everything and since using it my rash has "stopped itching". So obviously I have stopped scratching. It is calming down almost before my eyes and it is a harmless non cortizoid cream which is what I ha been prescribed which did nothing.

So Happy Healthy New Year to us all and keep the advice coming.

[Woochan in reply to despair1]

It was the Dr Toft book that changed things for me. By showing her the relevant parts of the book I was able to convince my GP to try increasing my dose of thyroxine until my T4 is at the top of the range. I was on 50mcg at the time and now I am on 150. Up until the last increase I was still feeling pretty awful, but the last 25mcg has made all the difference. I hope things work out well for you too. X

[tiredandemotional]

Finding this site has been a great source of help and info, but it also makes me feel despair that so many people are suffering with uncaring, ignorant and quite frankly dangerous doctors. This is a serious disease, but doctors only get a half a day of training on all the hormones in our body, how can this be when hormones are so important?

This idea of handing out pills as the immediate and only answer to medical problems is, IMHO very dangerous. Where are their diagnostic skills, how many people are they harming,

and why oh why do they demonise the very few doctors out there who are trying to help us?

It is so hard to take your health in your own hands when you feel so exhausted all the time, but it is inspirational that people do get better, long may it continue.

A Happy and Healthy 2013 to you all

Lyndene xxx

[despair1]

As I said in an earlier comment 1 in 10 women get breast cancer (and that includes me) and 1 in 10 women get thyroid imbalances, but no one knows about thyroids. Whereas with bc the medics run about like headless chickens giving you treatment and providing drugs, which in my case were not needed and are probably what caused my thyroid to fail as they were a hormone suppressant. Lucky ol' me.

I too have just bought the Dr. Toft book and there is a particular passage in it which I am going to show my GP...for info it's on page 46 and headed possible future treatments...this may or may not be relevant to me but I am going to ask nonetheless.

I have started on 50 mcg LVT and now for the last month on 100 mcg but no change at all. It is particularly bad when I try and walk upstairs or a hill as my legs, and arms too, feel as if they are weighed down with lead and I have to shuffle or drag myself around. First thing in the morning I feel halfway normal, but it's not long before the lethargy kicks in and all I want to do is sit, as I am so exhausted. My doc can't seem to understand I am not TIRED.....but just have no energy, which is completely different. I can sit up to the early hours watching movies, but walking defeats me.

When I see my doc next week I am printing off all these comments and going to ask him to read them as an insight as to how we poor sufferers feel. Maybe just maybe when he sees how many there are he will take notice and act.

I again wish you all a Happy 2013 and keep the advice, info, support coming.... it's keeping me going.........

From Despair (but not so despairing as I was)XXXX

[Tangles]

How Saddened I am.

I posted a reply to Woochan's good news and out of it comments arise which again highlight the misery and despair we all live in.

Tiredandemotional your name describes so many of us who feel the same . I want to cry for you and with you along with the O so may others who we can appreciate feel the same as us.

And Despair, well you have mentgioned a rash. My poor sister suffers so terribly with one that covers many parts of her body. She has been given so many different types of cream for it,each to no avail. I will phone her in the morning and tell her of your discovery. Sealing the effected area seems just so logical and simple. I hope it works for her.

I have never heared of the Dr Toft book. Can u advise on what I must lookout for on Amazon. it seems a must have for me.

And also Despair. I too have written an E mail to my Doctor.I dont think he is going to be too happy with it. A bit of a begging one actually. Ive asked him to look at this site. Read the comments, look at peoples symptoms stc. Four weeks ago he laughed at me. I cant let it go at that though. I will advise on his reply in a week or so. I have told him I will contact him in the new year for his opinion. Giving him a bit of time to try and understand it all. But the question is 'Does he want to' ? I will let you know of his remarks.

Thank you everyone who has given a reply. Doesnt it just make you realise how urgently we need our illness to be recognised as serious as it it and how we need the Medical Proffession to try and understand us.

Love to you all

Annie x

[Hidden in reply to Tangles]

you can get Dr Toft's book (& others) onThyroid UK though Amazon, here (down the list a bit) all GPs should have one!

thyroiduk.org.uk/tuk/suppor...

otherwise it's in most Chemists at £4.99- I seem to have lent mine out & can't remember who to, as usual.

Best wishes to everyone for 2013 - Jane

[Hidden in reply to Tangles]

Also available from our library - drop me an email if you are interested - [e-mail] (office closed till 3rd Jan)

Louise

xx

[Tangles]

Thank you for your help. I have ordered Dr Tofts book from Amazon xxxx