Has your HealthUnlocked community posi... - HealthUnlocked Blog
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Has your HealthUnlocked community positively impacted your health journey? - If yes, please describe how in the replies below
SaskiaHUHealthUnlocked188 VotersPlease select all that apply:
Given me the motivation to get walking again I hope the app this more targets to reach as this is defiantly a plus 😀
I do find the weight loss community are very encouraging and supportive with their prompt responses and sometimes shared dilemmas! As a retired person, it is great that there are others here of my generation….they are not all energetic youngsters who sometimes have a slightly different outlook on life. The best thing about HU too, is that we get all the support as a club member would, yet it is totally free!
So many helpful and kind people here always ready to encourage and help where possible with people's anxieties and queries.
Without this Healthunlocked community I would not be as well as I am today. The advice is second to none. The people on here are friendly too. I now have the courage and the knowledge to see my GP and endocrinologist and hold my own. I now have the confidence to make some decisions that are helpful in making my life better. I am more confident in taking my T3. I look forward to reading posts on here and to learning more each week. My life is certainly better than it was without Healthunlocked. I am also able to show friends and family proof that I am not making any of my symptoms up and the things I am doing help my health and well-being.
Compared with how I was when I joined this community I am a new person and hope to improve even more in the coming months/years.
Thank you for being there.
Interesting that you mentioned disbelief from family and friends, I too have this problem and now I just don’t mention my symptoms anymore. This as is not the best solution but I can’t fight my corner anymore.
My immediate family are very supportive, especially as I’ve worked out my worst migraines are associated with low thyroid levels. They’ve seen me struggling and know when I’m not well as I get really black around my eyes.But I like to tell them the reasons I am like this and show them information. My cousin is very similar to me (minus the migraines). My sister also has Hashimoto’s but has different issues.
My mother in law says things like “I thought you were better now” (🤐)
My best friend struggles to understand why I can’t go out if I’m already tired.
I don’t always tell them my symptoms, but I’m now at the age where quite frankly, if my body says no, I’m not doing it and I don’t care what anyone thinks of me.
I am guilty of saving my energy for my grandson who brings so much joy to my life and makes everything worthwhile 🥰 (plus he doesn’t question why I’m on T3 and why my TSH is so low 😂)
I hope you are able to improve your QoL and feel better in yourself too ☺️🧁
Yes, we can lose our enthusiasm if we still have clinical symptoms but the majority of people who do not have a problem with their thyroid gland have no understanding how many different 'symptoms' that can affect us badly. It's not just one thing but it is a 'whole body' experience.
I do not understand why the BTA et al have withdrawn NDTs (natural dessicated thyroid hormones prescribed since 1892 and the first to save lives - then removed T3 now restored to 'some patients' .
I am one of the lucky ones and have a regular prescription for a small dose of T3. Without this small dose, my symptoms would be totally debilitating.Recently, the pharmacist appears to be stalling, telling me that he cannot get a supply. He also needs a signed document stating that T3 has been authorised by an endocrinologist. I ordered my prescription 7 days before my tablets ran out. Every day I got a new excuse from the pharmacist, who at one point said that I could up my T4 which he claimed would be the same as adding T3.
Following many heated exchanges, I finally got my prescription on day 9. Luckily, I knew someone on the same tablets who could give me a couple until I got my prescription.
Unless you have thyroid disease, it is very difficult for others to understand our symptoms and the importance of our medication.
Many people who don't have a problem with their thyroid gland, cannot possibly understand how incapable we can become if we don't have a replacement thyroid hormone that suits our body and sometimes we need to trial options if levo alone isn't doing so.
It is such a relief when our body - when on the right dose or right hormone replacement - enables us to recover our health.
Helped me to establish in a correct way my prednisolone dosage and to understand how to decrease the dosage very slowly without PMR flares.
Lots of very helpful information and encouragement to overcome Hypothyroidism, a disease which is very poorly understood by most medics. Thyroid UK and The thyroid site have been invaluable. I now have a life not just an existance. I feel very sorry for all those with thyroid issues who haven't found the site and linger in a state of poor health due to under treatment or no treatment. As with most health issues it can be a post code lottery as to whether you get decent treatment or the brush off.
By learning about my disease and the treatments available I felt confident to stand my ground when medics were dismissive of my continuing symptoms. My health score is about 8.5 now where previously it was about 5.
All the support and advice from the weight loss group helped me loose 3st and the Maintainers group help motivate me to keep on trying to stay within my healthy weight range. It is really a ‘we’re in this together’ - whatever you are going through, others have been there too.
I feel blessed to be able to help the ones recently diagnosed as can be very frightening. I was diagnosed with severe COPD in 2010 and I like to reassure members that this is not Terminal but progressive. Thinking Positive and exercising also good diet can slow this down. My advice always concentrate on what you can do, not what you cant. Be grateful for every day as many worse off .Made many friends on the forum, great bunch of people xxSheila 💕💕
Being part of a community and knowing that you are not alone with your issues is amazing. For years I thought I was and its comforting to hear the stories of others and share in their experiences. You are also sometimes able to pick up tips that you maybe hadn't thought about.
It is a source of comfort to know that one is not alone and there will always be someone who has the same or similar happening to them. To be able to share, help and maybe vent frustration is balm for the soul.
I also joined the Pain Management and Research groups and took part in a piece of fascinating research. I was given access to a course and gave my feedback so that it can help inform further research.
Without The PBC Foundation there would be no knowledge or sharing forum for this rare/uncommon disease leaving sufferers unable to self advocate
Yes. Just to see how many of us have problem with sourcing help.
i got some advice about how deal with complications post surgery.
An informative community with members always willing to share experiences and offer support. The excellent volunteers and members help to clarify queries and advise on new developments. The information gained often helps with Consultant discussions.
It is very helpful to learn from the experience of others with asthma.
Asthma is a scary illness! It took me years to learn to control my breathing and not panic.When you have a community that understands how you feel during an asthma attack, it feels reassuring. You have faith in those who have had similar experiences and have tips to share.
With a nice number of problems HU communities have given me access to similar people who have been easier to talk to and more helpful than my doctors and specialists.
This heathunlock group as help me a lot with finding out I have bronchiectasis and kidney stones. So glad my sister told me about your site and every one is very supportive I am so happy. And I get a lot of support from same goes to my sister we know so much about our health. Thank you heartunlock
It has helped me to Cain confidence and make new friends which has helped a great deal. Also I know that if I need any advice I can always call the help line. But most of all I am able to help others by chatting with them.
I am not alone! My disease ( APS) is real and my symptoms have never been the desperate machinations of a hypochondriac!
Reassurance and sound counselling from fellow sufferers.
Want to thank each and everyone one of the people on health unlocked thyroid forum who have shared their great knowledge of everything about thyroid desease and how to treat it and for always being there to talk to when I needed a shoulder to lean on.
I felt so alone with the detrimental and disabling effects of Thyroid disease until I started reading how other people handled theirs. I bought the books people recommended and started to implement a new approach to getting well.Don’t get me wrong, I did not make changes blindly, I thoroughly investigated and researched anything I wanted to do. I presented my findings to my endocrinologist who supported me in my decisions.
I now feel that I am in control of my thyroid function instead of the other way round. It is a terrible disabling condition that I wouldn’t wish on anyone therefore, I am grateful to the health unlocked community for helping me to function as a human being again.
Thyroid community very probably saved my life. I would have been on antidepressants, beta blockers, statins and sleeping medication if id listened to GPs. Instead ive been pro active as regards diet and supplements. I feel much better than i was, but still symptomatic, research goes on with the help of Health unlocked🌸🌸🌸🌸🌸🌸🌸
So much more information, cited research, compassion than I could finds elsewhere. Doctors seem to lack ongoing education about my problem, whereas this community has taught me so much! Knowing how others are dealing with problems similar to yours makes the journey easier, and bearable. Many thanks.
I can share how I feel and also do not feel so alone knowing there are others just like me out there with similar issues.
You speak to people who have got the same or similar health problems that you have and it always helps to talk.
I’ve met several great people,gotten some insight into problems and I was able to help a few with issues I have experienced , love the warriors 🙏🙏
I feel I have a source of info now!!
mental health I wrote down biting tongue and POSITIVE REPLY normal with my condition, occasionaly yes pay closer attention if daily.that advice helped.
Have been there for me when I haven’t known who to turn too. Provide I valuable help and advice.
Lifted me up xxx
I've lost some good friends on here that helped me along. Some that it was just nice to be able to talk to. Sometimes there are times i wished those people were my neighbor.
You raise a good point. Since I joined the community, I have seen many truly gifted people leave to meet their maker. People who have continued to contribute positively right up to the end. I have read painful stories from those left behind , overwhelmed with grief.It brings into reality that our illnesses are real, many of them progressive and some are sadly terminal.
We are here to learn from each other’s experience and offer support where we can.
If we can help one person to feel lifted, supported and to understand, then we have won and the contribution of those gone before us will never be forgotten.
May they rest in peace.
I've got to know some very nice people in similar situations as me & it was good to share my problems , & of course nice to meet people in completely different situations
Keeps me informed and gives guidance for me to manage my PMR/GCA
This forum is a great way for people from other places (I am from the USA) to recognize and share the CKD journey and learn from each other.
Not only has it affected my health, but also the health of folks with whom I've talked about the NHS programs, including a nurse in my doctor's office.
The varied content has given me a greater understanding of “breath” or lack of it. Thank you
Over the last 30 months I have had more information, advice and unfailing support from the PMR forum than from ANY part of the medical profession. I can now understand and deal with the condition and get on with my life.
The blf Community have helped me so much, especially when I had covid, a very supportive group
Great source of inspiration and support knowing that I was not alone on this journey.
For me it helped me to realise that a diagnosis of hypothyroidism and some tablets from the GP was not the only way to manage my symptoms. Equally it helped answered my initial questions as to what on earth was the thyroid itself, how did it work and how was mine not working! I've found the guidance on optimum ways of taking medication, and getting tested beyond TSH invaluable but also the other things such as diet and stress reduction. Four years since diagnosis my understanding of how to manage hashimotos has been helped enormously by this group by signposting me to many strategies and helped me not feel quite so alone with a bewildering diagnosis. With thanks to those further down the road who share what they have learnt.
Family for Real 
Unapologetically and Authenically - the "Love and Concern is Real."
NeeC
Feel I have learned a lot about my condition and feel not so alone
Only place to get advice from those who experience my health issues.
It has helped me greatly and has given me confidence in my CKD journey. I also like being able to connect and share with others.
I've learnt more about my medical conditions through communicating with other like minded people on the forum. Plus, I've made friends on this forum who have supported me with my health journey especially so, when I was diagnosed with cancer and needed emotional support.
It's been my life line in managing and living with PMR
I have managed to reverse many of my more serious symptoms, but many of your contributors berate me for claiming what I do. It has recently been confirmed by the Mayo clinic in the USA that what I clain is perfectly true, it does produce GDNF which does repair damahged brian cells. And patients doing the exercise do get better.
Swapping opinions with these other doubtsayers has helped me to more clearly tel other people how to reverse many of their symptoms. It does not work for everybody, which I learnrd her as well.
Given me so much help & support so that I can manage this rogue condition , control it & not let it control me Thank you so much everyone 😋
Supportive & educational to learn of others' experiences.
It's a real total caring brotherhood and we all pull together and gain from each other positively. Seeing how others adapt to the changes on this journey nutritionally physically spiritually is the driving force for me
we all give each other the will to keep on moving as much as we can...take care of our selves ....
Has been invaluable during my mbc experience. To connect with others with mbc is the only way I can deal with this devastating diagnosis!
Reading about other people's experiences and learning what has worked for them and what hasn't has been very helpful in learning to live with the various health conditions I now have.
An enormous YES. I am part of PMR/GCA and simply woke up one morning blind in one eye. I'd been repeatedly told I had the flu. All the powers that be that are so much wiser than I, led me to HU. Without the group I would have known nothing! Because of them I was a better educated patient and able to advocate for myself. The forum gave me the courage to ask knowledgeable questions and be involved in my own care.
Psychologically, the group was a life saver. At the time my husband and I were separated, I was 78 and living alone in a state in the US that was strange to me. Having GCA is not like the surgery from which you recover and friends pitch in...and I had wonderful friends. GCA however, was a life-changing occurrence and no friend can be asked that much.
My faith and the forum kept me going. Without the forum; I really hate to think of how mishandled my case might have been. I was diagnosed in 2019 and at the end of 2020, I returned to Indiana and my husband and I reconciled. The HU website and PMR/GCA , as well as CKD, are a VERY important part of my life for which I give thanks each day~!
Without this community I would not be as well as I am today. It is very helpful to learn from the experience of others lots of information and knowledge🙏
PMR community is very supportive and the members give good health tips for those with PMR
Insurmountable ammount of information to absorb. What more could you want.I asked my newest medical oncologist(4th) now if they knew about Health Unlocked.
They did not. Did the take my request and check it out? Have no idea. Their loss.
The SHARE community is eager to respond to questions in sharing experiences, and offering advice. This does help individuals to feel less alone as they interact with others who understand their experiences. We also are very fortunate to have free access to a book authored by a member of the SHARE community: Anne Loeser's "The Insider's Guide to Metastatic Breast Cancer". This is a wonderful resource for those who appreciate scientific results.
With a serious autoimmune disease, I got very little help or guidance from health professionals and would have certainly gotten into major trouble if it hadn't been for my finding the HealthUnlocked website! I have been saved from countless wrong turns in my health care by the forums here! Thank You!!!
Thank God I found Healthunlocked , gained knowledge and guidance from the fantastic Lung forum to manage my Lung condition and ask for correct Medication instead of being fobbed off by inexperienced doctors. Found they have other great forums to help with other health issues. I encourage anyone that has health problems to join Healthunlocked . 😷🤒🤕🤗
I belong to more than one, as have an interesting mix of illnesses. All have helped with very good advise on these problems. More than this I feel that the Lung Conditions Community have helped me keep my sanity in recent years. I was already housebound before the Pandemic, but the lockdowns seem to make it all so much worse. The encouragement and stories from the members have contributed to me still being as sane as I was (not saying very much). They have been of invaluable help.
Helped give me the knowledge and trial papers to argue with the doc for a trial of treatment and then again for an increase
Justice, Faith and Hope found me in this community.
I find people who are very helpful and answers from those in a similar situation. I am learning a lot to help myself 💗
I have learned so much about my condition, and I also enjoy the beautiful comadary. You all Rock
It's interesting reading about other peoples experiences of living with a difference and you realise that you are not alone, and that many others face the same hurdles and difficulties of trying to fit in and be accepted.
Definately.
I deal with MS & the MS community has been a blessing to me many times. I feel as if we are all brothers & sisters I love them each & everyone!
I have polymyalgia rheumatica, which is not well known by most people, and I found a community here, plus advice and support from knowledgable and empathetic fellow sufferers.
Just reading a lot of the replies and thinking - that is me . I am OK - then typing an acknowledgement . Great for that tea break de stresser to see how people cope , pinch a few recipes and give back a bit of that motivation I received when I first joined . Love reading about the books everyone is recommending as I am hooked on books.
I have an MPN (Post PV MF) which is a rare blood cancer and most people I know have never heard of it. Luckily my GP knew enough to refer me to a Haematologist when she suspected it. It was a great relief to discover the MPN community on HU where I have gained a lot more information about my condition than I would ever have had otherwise. People in this forum are generally well informed and supportive to each other. This in turn reduces the feeling of isolation you might otherwise experience without it.
Is there a community concerned with, for want of a better description, healthy aging? This would be for people who are interested in dealing with the normal effects of aging. We are more than just our specific medical condition, but as things "wear out" it would be nice to have a place to discuss just plain getting old and how to deal with it.
Health Unlocked is a inspirational site it gives hope, support and inspiration to all. The other benefit is that you can chat without others on the forum with the same condition.
Positive knowledge is vital as one can keep in contact with the pros and cons that affects AF (atrial fibrillation). My age is 78.
Information
Had one stroke in late 2014 (survived excellently) according to my doctors, and again, occurred a further stroke in February, 2022. From day one, after my first stroke in late 2014, I was particularly allergic to most anticoagulants -and in February 2022, I chose warfarin, as I could cope with it!
Smoking was a habit i thought I'd never quit, but through lots of testimonies, i have found the courage to quit.Thank you.
I've been able to learn to create a positive mindset towards getting better . Also I've received proper knowledge on some health challenges that are been discussed on this platform. Thanks
It's positive impact on my health which I also used knowledge gathered to rescue someone else in my community
Thanks for sharing this experience
Yes it has as it has allowed me to see I'm not alone with very sore fibroids in me as it makes me feel very lonely at times. I just wish Aberdeen would have a support group so I could speak to others face to face in the same situation as me.
I didn't know that there were so many people out there who were going through similar experiences to me. I have had many replies to my posts as I didn't know how many genuine nice people there are out there, which really helps as we continue to support each other and most importantly be kind to each other. Except for 2% selected few post from people out there but all in all very pleased and happy.
I have found so much information here as well as kindred spirits that are going through the same challenges I am. This is a great community.
I have gained valuable information from the different communities. I am still learning. I’m better prepared for doctor appointments. Very grateful
the support of the PMR group is amazing, the help and suggestions i have received has helped me so much in my journey to taper down off prednisone, i dont know what i would have done if i hadnt found this forum, amazing people! So informed about PMR.
not at all. I have amazing family, friends, and God have the biggest impact in my life. This is just another woke social media app. No one actually really wants to hear the truth they just want attention. I’m good!
Actually, in my humble opinion, HealthUnlocked has been the blog, that has helped me get through daily living, with several ailments, because of receiving advice, support, and concern, from other people who have been diagnosed with same, or similar ailments! Also, I have gotten more practical advice from HealthUnlocked bloggers, and empathy, than I have from professional medical providers, some who are apathetic, in their response, in dealing with my Cerebellar Ataxia, and Parkinson’s Disease manifestations! Thanks to all at HealthUnlocked!
Since I found HU on the internet, I come to visit daily. And find tons of valuable information. It’s also good to feel, that we are not alone on this journey, even wishing everybody to have a successful battle against this beast.