Any positive outcomes?!

Is there ever anything positive on here, its 90 % awful!

57 Replies

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  • Of course it is. That's why it exists. This is a forum for people who don't fit the mould, who don't get on with levo, can't convert, can't absorb, can't get diagnosed, etc. It's not a happy ever after forum. I think there is a 'success story' section somewhere, but, when most people sort out their problems and feel better, they don't hang around here, they're off, enjoying their lives.

    If you want to look at it from a positive angle, there are over 67 000 members. But, you won't see over 67 000 posts at a time - thank the lord! The majority have asked for advise, acted on it, and stopped coming on here because they now feel well. Occasionally, one or two might come back to tell us how well they're doing now, but most of them forget us, and that's the way it should be. But, that doesn't mean there are never any successes, it just means we don't hear about them. And why would we?

    Besides, the majority of hypos don't even need to join a forum. They get diagnosed, and successfully treated and don't even realise what hell it can be for some people. We, on here, are the odd-balls, the misfits, of the thyroid world. Don't let it depress you, we're only a small percentage, and most of us get well in the end. :)

  • Thank you for that perspective of this site. I never thought of it that way:) Just scared and trying to find information to support having hope at this point. It makes a lot sense what you said!

  • Information you will find in bucket-loads, on here. And, there's really nothing to be scared of. If you've just started on this journey, then you have to realise that it is going to take time. You can't avoid that. But, if you keep learning, and take ownership of your disease - don't let your doctor just fob you off, because he really doesn't care - then you have every chance of getting well again.

    And, of course, people do come on here to rant, and wail, and get it all off their chests. Because they can't talk to their friends and families. No-one really understand except another hypo. So, that makes things perhaps look worse than they are.

    Don't be afraid to ask questions. Even if it seems like it might be a silly question, you can bet your boots that someone else is dying to ask it, but doesn't dare! lol

  • ........CLEVER Old Goose 🐧

    luv mx🌹

  • Thank you, madge. :) But, that looks like a penguin... lol

  • mmmmmm.... it does , doesn't it ...... but you're no Penguin !

    mx🌹

  • lol

  • Loriputnam11,

    You might find some of the better news here:

    healthunlocked.com/thyroidu...

    :-)

  • Thank you!

  • This site saved my life. Learn everything you can from here and ask questions. When you know what's happening you can take control. I did and most of the time I feel very well.

    Read my posts and you can see just how much this site has helped me help myself.

    Tanya

  • Well, you have to remember that this is a forum for people with thyroid disease. If you suffer from a thyroid disorder, chances are you also struggle with other problems such as adrenal fatigue. Endocrine diseases tend to affect the whole body and not just the organ concerned.

    I have seen many posts here by members reporting successful treatment and symptom relief.

    But, of course, many posts are about problems. That is normal in this kind of forum. If we did not have any problems, concerns, or questions, we would not need this forum.

    Personally, I am very grateful forums such as this one exist. When diagnosed, 17 years ago, I was told by my doctor at the time: "Give it two weeks on thyroxine, and it will be like you were never ill in the first place". That turned out not to be true...unfortunately, the doctors who understand this and adapt our treatment accordingly are few and far between. That is why forums such as this one are so useful, because you realise you are not alone, that many other people all over the world are struggling with the same issues you are...that has meant the world to me. And the advice and support from forum members have been invaluable.

  • I suppose because I have just been diagnoised after months of horrible side effects, Im just trying to find positive out there in this virtual world and am not seeing very much that I will ever feel half way normal again. But Thank you for letting me know that this is more where people are searching; like me:)

  • People do come back and thank the forum. Particularly if it is something simple that their doctors have decided to ignore or are clueless about e.g. ignoring vitamin or iron test results that show they are deficient, not prescribing sufficient levo.

    Hence you will see similar posts again and again telling people to get the same things checked with links to sources of information.

    Some forum members never post because of this, as there is enough information for them to figure out what is wrong on their own and sort out their treatment.

    One issue is if someone has brain fog it is difficult to understand the posts and information so you sometimes see posters posting the same or similar questions. This can make it depressing reading for newer members thinking that person isn't getting better.

  • So glad to read your post, bluebug. The brain fog is flippin debilitating! I'm often concerned people are thinking, 'but we've already told you that!' Hey ho...

  • I also agree with Greygoose that most patients are successfully treated with thyroxine only. These patients only need to see their doctor once a year to get their prescription renewed, and hardly have any reason to visit forums like this...so of course the unhappy, poorly treated patients who do not respond well to T4 only drugs are overrepresented here. But don't let that frighten you. You'll soon find out that forum members are nice, knowledgeable and very helpful.

  • Search and you shall find ...

    and YOU my dear have come to the Right place ..

    SO , go ahead ... ask !

    all these good folk are just waiting to help you .

    Best of Luck Luvvie

    Mx🌹

  • Hi Lori, Many doctors only treat low thyroid but most of us have an autoimmune disease and that's why we are still ill. Thyroid hormone doesn't cure autoimmune disease. If you look at my profile page and see my posts, they are mainly positive methods for treating Hashimoto's or SIBO from many who have gone into remission.

  • I've just posted something very similar. I hear you! Having finally uncovered a root cause for all the symptoms/conditions I've had 36 years, I'm desperate to start feeling better! I'm not even sure what normal is lol but I fancy the sound of that too ;-)

  • @Loriputnum11

    Actually.....news on here is 90% positive! (not negative!) 10% negative for those very few that the site cannot help. 90% positive because whilst the actually posts may be terribly depressing and sad....the outcomes following advice and guidance from people on this site who have seen and been..are very often highly positive because their health is certainly improved from what it was before the advice/guidance.

    And, I couldn't agree with anna69 and Greygoose more. My GP said exactly the same thing to me.. " give it 6 weeks and you'll be back to normal" This left me feeling so hopeful and relieved at the time, to know I could get better, really easily. Like Anna, I was one of the unlucky ones... from the point of diagnosis it has taken me 2 years to fully appreciate the whole situation. Its been 2 years of real ill health struggle, 2 years of little or no support from the NHS, 2 years learning about my condition, 2 years to reluctantly acknowledge there is little help out there by the usual means, 2 years of great expense going privately.

    The positive side? 2 years of fabulous support, advice, knowledge and experience from members on this site. Without which I would probably have ended it all. Through the site members incredible wealth of experience, I have taken control of my own health and and definitely feeling 90% better than I was 2 years ago....

    Shon D

  • I've a positive for you.

    Thanks to the wonderful people here, their knowledge, experience and support I now experience a quality of life that my Dr didn't know how to give me. I self medicate & monitor and I couldn't have done it without these lovely people. I don't need to make reading the posts a daily pastime anymore but I know that if it all goes Pete Tong this where. I will turn for help. 😊

  • course there are postive outcomes, that is why we are here! helping each other and providing formation

  • Let us try to help you feel more positive. First of all post your blood test results with ranges. You can ask for these at your surgery as they are legally yours 😊

    How long have you been diagnosed and what dose are you taking ?

    Have you had your vitamins and minerals tested ? B12 - Folate - Ferritin - VitD. These need to be good for your thyroid hormones to work and for you to feel well.

    Stick with this forum - keep asking questions and you will soon begin to feel better. Once you start taking control very positive things will happen.

    😊

  • Agree with GG to a certain extent. Think you have to remember that by the time you find this site you are probably desperate, your doctor / endo May have been rude or dismissive towards you, you are feeling pretty ill and you are probably really scared too.

    You will also likely as not have been told that once you start thyroxine your worries will be over and you will feel like Wonder Woman or Superman depending on your sex. When that doesn’t happen for a variety of reasons then no w9nder you feel awful and start searching the internet and end up with us.

    We are the tip of the iceberg as GG says so I wouldn’t let it worry you. I joined in 2012 wondering if I would ever feel normal again, I do. I was terrified in advance that my treatment wouldn’t work, that I wouldn’t get enough of whatever I needed to make me feel well, that didn’t happen.

    I discovered that we have to be proactive and learn as much as we can about our thyroids, that we must take an active part in our treatment rather than ‘have it done to us’. We need to know what our blood test results are along with their lab ranges, we need to ask questions and we need to be happy with our treatment or move on to someone better.

    I also discovered that no matter what questions you ask or what worries you have there is always someone on here who knows the answer. So d9nt give up hope.

  • :) Thank you, I am trying not to give up.

  • There are over 2 million people in the U.K. taking Levothyroxine (3.01% of population). Fortunately they are not ALL here! Only about 10% have issues with not tolerating Levo very well.

    Others here, it's often because GP's not treating patients correctly. Once they get that sorted with advice from here, either a new GP, or get old one to listen and learn, then they improve radically.

    I would not have made any progress without help from here. GP's and endo's just don't seem to consider the gut is connected in anyway with thyroid. But with Hashimoto's it's nearly always gut and then vitamin related

    More and more research shows that with most autoimmune diseases, you may have genetic predisposition, but the problem probably begins in the gut

  • So now you know! Also that GG gets little sleep.

  • lol I've got this rotten chesty cough at the moment, that won't let me sleep. I do two hour shifts throughout the day and night!

  • Poor you, I thought you were up bright and early today.

    Pity it was because you’re feeling awful. Actually I like mornings here (East Anglia) for some unknown reason when I go round for the paper it always reminds me of France.

  • France is a big place. I don't think where I live looks like East Anglia. :)

  • It probably doesn’t here either , I’m sure it’s wishful thinking 😉

  • :)

  • Hi, and yes it can be depressing seeing how hard it is to get good treatment for complicated problems On the other hand, many of us even on here where the tough cases come have had what you could call remissions, phases of feeling better, and phases of feeling worse. Don't despair! We can all get healthier and this place has good solidarity in the process. Hang in there--A.

  • :) Thank you

  • Hi Lori ... when i found this site about two years ago... i had practically locked myself away from my lovely family , with my Ipad .

    I thought i was insane , i could hardly talk , I choked when eating and shook like a blamange ..i was in a very high state of exhaustion and sweated 24/7 non stop , my anxiety levels were through the roof ............. there is more .. much more ... but i bet , by now, you know many of the symptoms of thyroid disease for yourself.

    I have Graves' disease ... but i'm Euthyroid now , ie ... normal .

    and i'm loving it !

    and the ONLY reason that happened is because , like you, I found this site

    ... and one other like it.

    I could have become better and left forever to get on with my life , but something inside me made me stay on ... it was because of the gratitude i had for all these lovely Clever people .

    They helped me when i was at my lowest... I was beaten and wanted just to lie down ... and leave this world where i had no peace.

    I sorted my Antibody situation , with the help of my Doctor, ( and an antithyroid drug )

    I then listened to every word on here and noted it all ... made myself a programme ..... and stuck to it .continually asking questions and listening to the voices of experience.

    I try my best now to be vigilant and try to identify those , like you , who arrive here with little hope but have the Will to live . ... and who will fight to the last to get well again... just like me.

    Be Brave and Trust us to help you .. you won't be disappointed Luvvie.

    Luv Mx 🌹

  • Your words are perfect timing as I lay here reading. Thank you

  • Whilst I'm not 100%, and if you have a thyroid problem you probably never are, I have had some positives. My health improved greatly after starting T3 which has now been stopped. Join our fight to get this back. By sticking together we have a greater chance of getting some more positives.

  • YES!

    TUK helped me sort out 40 year long health issues, & now I'm WARM!!! :D

  • That’s like asking why a funeral home has no atmosphere! 🙄

  • Morning Loriputnam11

    Here is a positive story!!! In Oct 2016 I was diagnosed with Hypothyroidism by my Renal Specialist and undiagnosed by an Endo 4 weeks later. After finding out about all things Thyroid from this very valuable forum , I successfully treated myself and I have gone from Stage 3 kidney disease for 22 years to normal kidney function. It’s simply amazing!!!

    Good luck Jane xx 😀

  • Wow love the testimony, thank you for sharing:)

  • Hi Loriputnam11

    You are welcome!! 😊

  • I wonder how many more people find that kidney function improves with thyroid treatment. I'm in the same boat.

  • Hi Sark1

    That’s great you have had better kidney function after getting thyroid treatment. I have read lots of information about the benefits of T3 with the kidneys and it is T3/T4 that I have been taking. In addition, stopping 30 years of PPIs (Omeprazole) and supplemening instead HCL with Betaine for LOW acid which will definately help any absorption issues. I also take Vitamin D and Vit B12 And a Thyroid Complex supplement. And gone gluten free as I became extremely itchy all over in the last 6 months, including eyes. Hope you are well?

    Hugs Jane x

  • Hi. Thank you for your kind thoughts x

  • I once thought I knew such a lot about my condition. I had a very good GP diagnosed at the same time as I was. My now late husband was a science based endocrinologist and life was pretty good for many years but then things went pear shaped for me around the menopause so then GP had changed, husband died and suddenly I felt very much alone but I found this site and been here ever since! That's not because things aren't working for me but I've now realised thiings have moved on and so I am learning so much more and also the knowledge of so called experts I feel is regressing so I am still learning as I feel that it's necessary to stay up to date and if I can help someone else along the way then that's a bonus. We are all different to how to how we react and how we live our lives so the number on the books I feel is a huge plus point as you are more likely to interact with someone who really understand how you are feeling. I'm having a battle with my family at the moment as I recently had a nasty fall and had an op the other day to but a plate in my wrist to hold everything together and yes in a lot of pain but my sons can't understand why I insist on treating my thyroid first and fitting other things around it. I'm sure many of us have been in similar situations! But we know what works and what needs to work and I juggle to make that happen!

    I've also noticed recently that the questions and answers are by different people so it's reassuring that through HealthUnlocked individuals are continually moving forward from the newbies hesitant first posts to the learners who are now confident enough to give advice as well which is a great achievement all round. I don't always look in on a daily basis but if I can give advice I will and it's surprising as well that from time to time I come across something that I had actually forgotten about! Proves that well as being forgetful it's good keep in touch to keep up to date!

  • Get well soon Silverfox. Quite right to put your thyroid first it affects so much. Hope your wrist heals quickly - have you thought of taking some high strength vitamin C every day to help with the healing.

    My pharmacist recommended it when I started taking carbimazole and I was telling a friend whose husband had just had a partial thyroidectomy about it and she remembered that when her son was young and broke his arm, his consultant told him to take vitamin C. So there’s a possibility to accelerate your progress.

  • Thank you for that!will give it a go!

  • Hi Fruit and nutcase ..I've just had surgery on my thumb and elbow and it hurts .. like *^#* but I was happy to read your report on vitamin C .. and for the past four days have been taking high dose Vit. C ... thank you so much for reminding me how very helpful it is .

    I'm sure is helping already ...

    ....so wise

    Luv mx🌹

  • Hi silverfox7, sorry to hear of your injury, but you're quite right to prioritise thyroid health. Without that, other health problems will not resolve quickly. :-)

  • Thank G-D that we have wonderful helpful forum as this one . THAT'S VERY POSITIVE on it's own .We come to this wonderful forum to navigate our thyroid journey . If Dr's would be as knowledgeable and helpful and caring as this forum is we wouldn't need this forum or any thyroid forum for that matter . I join many countless thyroid patients who are very grateful for just such great forum .

  • I joined 6 years ago feeling pretty desperate. Thanks to this site I now feel 100% back to normal. It did take quite a long time and a change from thyroxine to NDT. I think my success story is on here somewhere :D

  • I sometimes think a great thought for us to take forward is onward and upwards!

  • The sun is out today, and that’s a positive, 🎃😸☀️ even if it is a watery Autumn sun. x

  • Well firstly, I never normally post anything so that's positive ish. But the bigger positive is if it had not been for the guys on this forum I would still be in the dark place I was 12 months ago. I was encouraged to get bloods done and from there advice given on the levels of vitamins and of course T3, the difference is nothing short of a miracle. Don't get me wrong it's been bloody hard work but I'm now over 2 and a half stone lighter. (A size 10 which I never thought I would ever see again) And a darn sight fitter, I had got to the point I couldn't even walk up the stairs without my muscles actually hurting! I now swim a mile and a half a day, go to the gym 3x a week and walk an average of 7500 steps a day. It's not been easy, the first time swimming it took me 20 minutes to do 10 lengths and I actually thought I was going to die as I crawled out. But I persevered, worked on my stroke and now whizz up and down the pool like a nutcase loving every single minute, so, wherever you are in your thyroid journey the best thing is to stay positive yourself and everything else will fall into place eventually. The info the guys on here can tell you is incredible and I am not being dramatic when I say they gave me my life back.

  • I have one, I feel better! Thanks to the members on here I have found lots of info and have taken it on board.I haven’t slept in the day time for a week, I’m cooking and cleaning again, and best of all I have a clear head!

    I’m aware this will be up and down but for now things are good. :)

  • I very rarely look on this forum anymore but this question caught my eye. I agree there is never very much positive information on it. I always feel worst once I’ve been reading on here.

  • Oh Dear ... we need you to help us help You ....by .. you asking questions .. it's not always enough just to LOOK on ' here '

    Our symptoms are often many and we are all very different .. so it is much better for you to ask specific questions and get tailored answers .. please don't give up so easily .

    I was in a very desperate state when I found this site ... and today I'm Euthyroid ... Normal

    All because of the kindness I was shown

    on ' here ' And the extremely valuable help I was given .. which enabled me to get my health ... and life back .

    Good luck

    Luv mx🌹

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