How are we doing? (self evaluation)

OK, apart from asking how everyone is (I may get over 7000 replies!)

I hope information here has helped folks. (it has me).

I work in a school and it's all about results so...

Has this forum helped you? How?

Have you looked on the main site for detailed info?

thyroiduk.org.uk/tuk/index.htm

Do you know you can use the Search box or ‘Tags’ to find info?

Have you tried the new ‘My Health’ tracker? – on the green bar above

There’s ‘Polls’ too e.g. about choice of meds and when to take them, or if your vitamins have been tested.

Do you feel more empowered to question your health care?

Any suggestions for improvement?

In other words – are we making a difference?

(not asking for praise - just checking if we are actually helping)

J :D

29 Replies

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  • Yes, this site is making a difference.

    I am now armed with more info to tackle the gp tomorrow, and hopefully I can get something out of him!!

    It is comforting to know that I am not going crazy, this is not all in my head, and unfortunately, there are others that know exactly what I am going through.

    Ann xx

  • Well what can I say :)

    This site has been a lifesaver for me. Thank goodness that I found it on the first day that I was (sort of) diagnosed with sub-clinical hypothyroidism. Initially I asked lots of questions and had some amazingly helpful replies :) When I first went to see the endo and was told that my problem was health anxiety and nothing to do with my thyroid, the support here was amazing. I knew that this was the wrong diagnosis because of this site, and this turned out to be the case.

    Then when thyroxine tuned out not o be the answer, I have had massive help with changing to NDT. This was not an easy path either, due it seems to low ferritin and cortisol, and I have had many helpful suggestions on how o overcome these. Now I am about 90% there and think another increase or two will (hopefully) sort me. I find that I now tend to write more blogs than questions, but the facility for both is so helpful.

    This site and the main tuk site have really empowered me. My GP has been so amazed and pleased with my progress that he is prescribing me NDT on the NHS :)

    I can't thank you all enough. This time last year I didn't think I would ever feel normal and happy again but I am :) ;) xxxx

  • I hope for your sake you don't get 7,000 replies! Just a quickie to say YES the site makes an enormous difference, and I can't think of any improvements...except perhaps some way of accessing success stories.

    Sue

    x

  • Yes definitely made a huge difference to me. Very informative, helpful and most importantly supportive. It has helped me understand my condition and symptoms (of which there are many-some of which I didn't realise were thyroid related.).it has shown me there are many tests and different types of medication to help treat us.

    This site definitely has made a difference to me - thank you :-)x

  • Its helped and still is helping me to go fight my corner,question silly doctor decisions based on figures and not how i am...so yes i feel like your the plaster to sort me out until someone else finds the right bandage so massive big up thanks its an amazing site!!

    x

  • I found the site useful. However, a lot seems to be about Hypothyroidism as opposed to Hyperthyroidism. Maybe I'm not accessing the information on the site correctly. If anyone can point me in the right direction I really would appreciate it.

  • yes very good site you answer questions on here that GPS cant or wont.

  • Hi Lynn

    I think that is just because there are more people on here with hypo. :-)

    Here are a couple of search results for you which might help:

    thyroiduk.healthunlocked.co...

    thyroiduk.healthunlocked.co...

    Louise

    xx

  • Thanks Louise I'll have a look.

    L.

  • Yes it has made a difference. It empowered to me to continue my own research into hypo'm AND adrenal fatigue. Bought Dr P's book ( at the end I was rather frightened) which confirmed my own suspicions of incorrect diagnosis: from there bought Dr Wilson's book Adrenal Fatigue. Cortisol bloods always come back normal but this does not mean a person has not got adrenal fatigue to some degree. If adrenals are not tip top thyroid will not get well. So many thanks and keep up the good work.

  • Yes and thank you. I wish I'd found this a year ago when I was first diagnosed.

    I wouldn't have put up with the comments from one of the GPs (Dr x) I saw - hypothyroids 'think too much' are 'too analytical' 'read too much on the internet' 'imagine symptoms' 'another patient's results are far worse than yours and he's not complaining...'

    Yesterday I spoke on the 'phone to another of the GPs (Dr z) at my surgery and asked for my yearly test to be requested. I also asked for printouts of my actual test results - not just the verbal 'normal' I was given last year.

    This site has taught me that I need to be pro-active as I can't rely on my GPs to know very much.

    Dr z said I could have these figures, however to bear in mind that 'it's much more important to medicate on how the patient is feeling and not rely too much on figures'... I told him that I was REALLY pleased to hear him say this, but this was NOT my experience at the surgery last year, when my symptoms were at there worst and I needed reassurance and support.

    Is Dr z just enlightened or is there a change in the attitudes towards hypothyroidism and is it being taken more seriously?

    If there is a change in attitudes going on, it's the work of people like yourselves who are making a difference.

    Hooray!

  • This site has been a huge help I was convinced I had an awful illness after all GP had said a couple of pills and you'll be great.Then when I wasn't you think all the symptoms can't be thyroid related after all the doctors say they can't be and only after speaking to people on here who say results are not normal go back,so instead of accepting things now I go back,I ask for vit tests which I never would have done and I go back again until they're sick of the sight of me and it's people on here that have helped me do that.Thanks to all of you :)

  • The help,information and support I have received from this site has been amazing. I understand so much more about my condition. Thank you.

  • This site has been a lifeline for me (and for my son through me). I have learnt so much more and had many questions answered to my and my son's benefit. Would be lost without it and the wonderful folk on it - staff and forum users - not to mention all those at TUK. Many thanks.

  • This site has helped me so much. I am dyslexic as well as having health issues including hypo. thyroid. Without you lot helping me "read" through the info. I don't think I could have faced upto my GP. I look forward to being with you all for a long time to come. THANKS.

  • Yep - all very helpful, having worked out this disease of hypothyroidism as the final piece of the jigsaw in my autoimmune (5 of them ) profile.. I landed on here, my tests at GP were negative.. but the private ones were not, (more detailed), however one of my professors in London, did note my tell tale reflexes and other things! So.. yep reading on here and your main site, gave me the correct direction to go in. MF x

  • I feel so glad to have found this site. I have found it very reassuring that there

    are people that I can ask for help and who know what I feel like.

    I have gained a lot of info / knowledge from here, and yes feel able to make my own choices about my health.

    I am much better, though still have some way to go , and I still use and value the site very much .

    Thankyou to all the folk who "man" this site.

    And thankyou for helping for us to be pro active .

  • I have been on this site for quite a few years now and it helped me get the T3/T4 combo treatment that means I am now being treated properly and feeling well. I would never have been able to do this without the information (especially Paul Robinson's blogs) I got from here to educate not only myself, but my doctors too! And that is still ongoing today... I know that, if I have a problem, I can post a question here and get a variety of answers the same day! Thank you, TUK, you're a lifesaver!

  • Yes! I have learned such a lot from this site and the recommended books. Still not sorted yet but now know that the big issues for me are Ferritin and Vitamin D. I have read so many warnings about too much ferritin but after two years of 3 x 210mgs I am still off the lower end of the scale! Now on 2 x 322mgs a day so hoping this will make a difference.

  • Has this forum helped. My goodness yes. Without all the lovely people who post and comment I think I would be dead by now. I am not being over dramatic. Through others I have found out about anemia, vitamin D deficiency, adrenal insufficiency, gut absorption problems amongst many other problems related to hypothyroidism. Paul Robson has been an absolute savior and my health is much improved from following his methods and slowly changing to Cytomel. I have gone from a person barely able to walk with problems of breathlessness and extreme tiredness (sleeping 18 hours per day) and joint and muscle pains to someone who can move more freely, experiences significantly less pain, thinks more clearly and has a belief that there is a future. All because I have learned to demand tests and treatment for anemia and Vit D deficiency. I have requested a trial of either NDT or Liothyronine and been refused both. So I buy my T3 therapy out of the country, pay for private blood tests and have sourced the best Vitamin D3 I can find. I am still struggling with finding suitable medication to treat the anemia.

    If I had not come across Thyroid UK in 2004 I really cannot think where I would be now.

    As for my GP - what has she done - very little. Yet I cannot blame her for my health state. Two days training in thyroid problems and no thought to integrative methodologies, out of date and poorly researched medication coupled with a stupidly large GP practice and 7 minutes consultation time render her inept. She looks on in a bemused state when I attend surgery and contradict her medical opinions. In her view my view that I had anemia due to hypothyroidism was wrong, she thought I had bowel cancer. When I said I had osteomalacia she said I had arthritis in my hands and it would never improve (it has). When I said I was sleeping all the time she said it was due to my blood sugar levels (I am type one diabetic) not the severe vitamin D deficiency or the unde-rtreated hypothyroidism. I am sorry this could go on and on.

    Yet here I found sanity and comradeship.

    THANK YOU THANK YOU THANK YOU

    Regards

    Lin

  • Lin - the brief was NOT asking for praise - this was supposed to be an audit!

    Just kidding, :D wow, since 2004?

    I believe Knowledge is power, and a lifesaver for me too, we tend to put our lives in their hands don't we? xx

    I feel very privileged to be part of TUK, and SO glad it (& this support forum) helps folks, thank you for your replies & suggestions.

    I think TUK are making a big difference, and slowly but surely, there is a shift to recognition this IS a worldwide problem, and maybe to getting the correct treatment by looking at symptoms? albeit we have to insist!

    (with apologies for not being very coherant tonight) Jane :D

  • Hi Spareriul

    I did wax lyrical but it is true. I do find the site useful (that is when I kind of became carried away). I have learned to be more insistent about my medical care. I certainly feel more empowered generally because of the information provision. I can use tags (great benefit) but I have not tried the health tracker yet. I have accessed the polls.The site seems to be working far faster now and that is good. I guess continued improvement would be to ensure the site runs smoothly.

    Has the site made a difference. Oh yes! I am starting to write again and I am off to Los Palmas in April. Viva!

  • I love this site, the first time I ever posted here I was fed up of feeling so ill, scared and although with great family, alone and lost in the horrible world of Hypothyroidism! Not only did this site reassure me and the people here help me immensly it is always here and ready to give advice (no matter how great or small)

    To the people who make this forum what it is, and that is a shining beacon in the world of thyroid, I salute you!!

    Keep up the amazing work :)

  • Feel bad that I've not replied sooner - lots of sleeping going on - but in short

    yes , by giving info and discussion and support and by highlighting other related factors

    yes

    yes

    yes

    yes

    will ponder the improvements question but so far so good I think!

    yes

    THANK YOU ALL for hours spent VERY MUCH APPRECIATED!

  • *like*

    x

  • Can I try and quote Churchill Never have so many owed so much to so few the site the vollenteers and all its members where else can we go for help support and understanding and where would we be without this site you are not only supportive but a life line for so many

    Thank you so much

  • Yes thank you. I am not often here any more as I have few problems and a good Dr. When I was first diagnosed this site was invaluable, in fact I am sure that it is all the help and advice has got me to this stage. I find it so reassuring to know if I do have problems you are all here and will help.

  • Evaluation of this Forum = PRICELESS in the very best sense.

    Reducing fear anxiety ignorance isolation where would I be without it? It does not bear thinking about.

    wyn

  • I'm not sure I would be as well as I am now (not 100% but fairly better with T3 added) if not for this forum.

    To start with it was only due to STTM that I ended up asking for more T4 after 1.5 years of struggling. From that I knew there was more info out there on thyroid issues, and when I had problems again with going hyper, and then even more hypo after that, last year I found this site in my research of what might be going wrong.

    It has been immensely helpful for shared info. It gave me the knowledge to push for my GP's to do more than simply suggest I was depressed and should try exercise/antidepressants (which I knew was not the issue, only a bandaid, not getting to a root cause) and from that to eventually get to an endo (as well as Dr P privately) who I could convince to trial T3 that has made a big difference.

    I hate to think how I would be if I'd simply taken my GP's advice. Probably diagnosed with CFS or ME or clinical depression and left to get on with it. This site gave me hope and thankfully the info didn't fail to deliver on the possibilities for improvement.

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