Joining our Thyroid and Thyroid Related Support Forum
If you are seeking help and support for yourself or for a member of your family or friends, you may find answers on our online forum. We have several thousand members and someone somewhere has more than likely encountered the same sort of problems you are seeking answers to.
All the information you will find, is given freely as we appreciate the majority of you have been forced to leave paid employment because of your continuing wretched health.
The more people there are swapping ideas and gaining knowlege in our forum, the easier it will be to keep abreast of the most recent research in this field. Medical Practitioners would do well to join, so they can gather information direct from patients who are voicing their real concerns.
Everyone is welcome.
Following are a just few of the messages written by Members who gave feedback, on the benefits they personally received by joining our Forum:
Lindilou: Simple, this forum gives us inside information, things doctors don’t tell us (for one reason or another – all in their infinite wisdom) We share actual real life experiences, not just what it says in a levothyroxine patient information leaflet. Real life experience is much more valuable. Also, it’s not a huge forum with millions and trillions of subjects, which can be confusing. This forum is compact and kept to the point.
Nigella:For me, TPA gave me access to blood testing companies (at a discount); access to heaps of resources to help me research about the thyroid; help interpreting the results of the lab tests and finally courage to discuss my thyroid lab tests with my GP and then more courage to take NDT when my GP said I wasn’t hypothyroid enough to be treated. Flipping fantastic!
Nicky: The TPA letter template made my GP sit up and take notice and finally gave me full tests after years of saying i was normal. This site is informative, strong and given me the confidence to self treat, and WOW what a difference it has made. I have passed your details onto lots of friends who are struggling, same as i was in case they too are hypo. Last year i was so ill, racked with pain, fatigue and massive weight gain, i had become clinically depressed and my marriage was suffering. My dr gave me no hope of things changing and i had almost given up, what a difference a week makes, thank you xx
Steely: for the information, the discounts on the tests, which are much better than Thyroid Uk’s. Also being able to chat to people in the same boat and realise how very similar we all are. Talking to others has given me a realistic perspective on my condition and made me realise there is no magic cure and that improving my quality of life may take some time. It was from this forum that I learnt that I could see Dr Skinner through a private referral. The doctor’s letter is incredibly useful and TPA has given me the courage to stand up to them. I like having you there in the background Sheila. You are a feisty person and you have tremendous experience of battling the establishment. I also like the scientific paper references that get posted here and if I have a problem I can just post it and I will get a variety of answers to sift through. I also like to see other members getting better. It gives me hope. Also you can say what you like within reason about the medical profession. It’s a good way of letting off steam
Twizzle: The education and information. The access to others who understand what you are going through and offer support when it all just gets too much to deal with. As Steely says, finding out about private referrals to see someone like Dr Skinner.
I suffered on the treatment by the NHS for many years and it was only when I found TPA forum that I learned that I wasn’t the only one suffering because my TFTs were in range. Since finding the TPA my health has gradually improved and I am hugely better than I was when the NHS was treating me. When the NHS was treating me, I could regularly see my doctor and explain my symptoms but it was always the same, your bloods are fine. Maybe they were according to the wide ranges from the lab but it must have been obvious clinically that the once outgoing, confident, energetic person had sunk into a reclusive, listless, fatigued, puffy wreck with a very long list of (ignored) symptoms. Today I am much better than I ever was under the care of the NHS. I go out and do things again. I have aspirations and things to look forward to. I dread to think how I would have continued to go downhill and struggle more and more if I had not found TPA. Goodness knows how bad one has to become before NHS doctors will give thyroid patients the care and support they need. Finding the TPA literally, over time, gave me my life back
Ann F: Until I discovered TPA I was struggling with thyroxine, kept going to my doctor telling him something wasn’t right, all he said was ‘try upping the dose’ to the point where I was so toxic I was like a zombie. The info on TPA led me to realise maybe thyroxine wasn’t right for me, and indeed there are reasons for this. Explained this to my doctor who now thinks I should see an endo! I am still not well and what has kept me going is using this forum for advice and info. I know I can be well, but without TPA would still be struggling on thyroxine
Cathleen: For me the TPA has everything i need all in one place. Support, advice, interpreting the results of the lab tests (even though i was not newly diagnosed when i became a member, i did not understand or had even seen my blood test results) TPA helped give me the confidence to ask the Doctor question about my results. Just reading other peoples post has given me comfort of knowing that that i am not alone and from the answers of these posts i have gained knowledge that i’ve gone on to use in the quest to gain my health back. I’ve been at my lowest on here but whenever i have come on line and i’ve needed advice i can say i’ve always got support. To me it’s like having a best friend that’s always there for you ,in my everyday life people do not always understand or are sympathetic with a long term illness that they can’t see ,but everyone of the members on here do understand and know they emphasise with me..I feel it’s given me control of my health – not the doctors
Hydrangea: Before I joined TPAUK I was scared and lonely because my GP had said I was not ill and scolded me for going to him with tiredness. Through the forum I learned about adrenal fatigue, why levothyroxine stops working, found Dr Peatfield and also made a very good email fellow-sufferer pen friend. It was a revelation to learn that the conventional doctor is not always right and to be part of an intelligent, well- informed, truth-seeking movement. The reduced-price tests are great, but it is the sense of restored sanity that has been of most benefit to me. Thank you!
Akhet: The most important thing I’ve learnt from TPA is not to trust the NHS when it comes to thyroid diagnosis and treatment. This sounds awful, and it is, but I already knew from experience that the way I was being treated was wrong I just didn’t know how to get the right treatment for me. After joining TPA I discovered I was far from being alone in the way I had been treated plus I was able to find out about all the practical information; testing, Drs, different choices of meds that I didn’t even know still existed! So I’d say the benefits for me are all/most of the information available in one place (useful when you’re brain-fogged) and the support from other members who’ve already been there and bought the T-shirt.
Ann H: The benefit is that this site is the light at the end of the tunnel. After years of my own ignorance I’ve found the answers to the questions that had formed in my mind well before the invention of the Internet. Questions, which had always been brushed aside or dismissed by doctors. Lives could be saved – what greater benefit than that? I know I lost my first baby due to insufficient treatment: the consultant said it was due to high prolactin as a result of insufficient t4. Hopefully I can make my own daughters healthy so they don’t go through the same experiences and live the half-life that I’ve had. There is no greater benefit than that! I choose health!! I’ve always had problems getting doctors to believe me when I say I’ve got health problems, I’m ill, and I’m in pain
Lily: TPA helped me to realise that there were things I could do to help myself without having to beg anyone and without having to ask permission from people who simply didn’t care. Thanks to TPA :
- I found out about private testing and getting blood samples taken;
- I found out about companies who will do tests and produce trustworthy results;
- I found out about optimal levels of minerals and vitamins. Improving my iron, ferritin, vitamin D, vitamin B12 and folate has had enormous benefits. I can think and remember better, I’m in a lot less pain, I can walk better, I don’t stagger any more, I’m not breathless, I can walk upstairs;
- I found out about websites that are really useful, such as being able to access the BNF, reading the NICE Clinical Knowledge Summaries, and became aware of sites like Pubmed and Google Scholar. There is also lots of reference material on the TPA website;
- I found out I could treat myself I did so. I wouldn’t have known I could do this without TPA.
- I found out from TPA about other choices of meds. I currently take T3 only. I have previously tried levo, and also NDT. I like knowing I can experiment and try things. My purpose in treating me is to maximise my quality of life, but that is something the NHS simply doesn’t care about. Being able to talk to others in the same boat as me has also been brilliant
Sarah: TPA gave me the courage to take my health into my own hands as no GP had been interested in what I had to say about not feeling well on T4 only. I was just left to get on with it, or take an antidepressant! TPA listened to me and did not ridicule or patronize me. Best of all has been the support I have received, especially regarding my changing over from Levo and going onto NDT. It has been the best move I have made for my health physically and mentally. I now have confidence in my ability to make decisions about my health
Colette: For me TPA is dependable help and resource (and possibly life-saving for some, and I do mean that literally).
My journey has been a long one and it was a TCM (traditional Chinese medicine) practitioner who diagnosed me with “Deficient Kidney yang”, I then investigated this and found the nearest Western equivalent is “Adrenal fatigue”. And since then I have been on this particular path. So what do you do /where do you go if the “Mainstream” won’t help you? How do you decide which book to buy out of the hundreds? Which tests do you pay for? Which supplements do you buy? Which companies to Trust? For quite some years I have realised that you almost have to diagnose yourself and then go tell the doctor what is wrong with you to get the right diagnosis. It is worth considering that the GP s are pressured onto spending 5-10 minutes per patient, how can they properly treat you in 10 minutes? Yes we need more like Dr P and Dr Skinner. But the NHS has changed now and the doctors are NOT ALLOWED to treat properly. So it is up to groups like TPA to pick up the slack. I am very impressed with the quality of the help. It would cost hundreds of pounds and months of effort to find out all that on your own. So Yes I find the TPA invaluable help to folk who are quietly desperate, and who are willing to do what is necessary to get their health back. So thank you Sheila and you others. Your work is actually worth a million pounds to us
Barny: how other patients were being treated by their Doctors I would have ended up taking another overdose and so for those Doctors who read the articles on this website, they should learn how not to treat thyroid patients as it can so easily push them into taking an overdose. I also look back at how a GP caused my elder departed Brother who I am sure suffered from HYPO to take a massive overdose and although he recovered, damage was done. It maybe taxing for a Doctor, but they should be trained to not get angry and shout at patients and I do not think thyroid patients can hack being shouted at. I think too better thought should be given to what drugs they give to us as they can easily cause us more problems. We need more Doctors like Dr Peatfield and of course late Dr Skinner
Angel: yes i have found many benefits , it helps all of us if we can be candid in our posts as this has helped me back in 2006 when a post caught my eye and led me to believe i had more than hypo and actually had hashimoto`s. i have leaned so much from others and it helps to know we are not alone in our illnesses. also posting research that we do passing on info is so helpful i can`t say how important this is.!
Jeanbyr: I know this forum saved my life, as I know it. I definitely wouldn’t still be working, I would’ve gave up long long ago, so I could take to my bed, and sleep the days away. The doctors would be treating me for depression, as they said this was all that was wrong with me!! I am where I am now, without anti depressants, and with self medicating, through the help of this forum, and finding Dr P here too. I know, I know more than my endo, and he hates it when he’s trying scare tactics, and I have all the replies for him. The answers, of which, I found on this forum
Joyce:I don’t know where I would be if I hadn’t stumbled unto this forum through a random Google search. My NHS doctors had dismissed me (as they do) but thanks to the information on here I was able to understand what was going on with my body. This led me to all the private labs I needed for blood tests and I learnt of Dr P who eventually diagnosed me (wish there were more like him). The information on where to safely buy NDT has also been invaluable. I’ve been able to go back to work and only have the odd days of absence every so often even though I still can’t do a lot physically, compared to when I couldn’t take five steps without needing to rest, I’d say this forum gave me my life back.
Welly: for me this website is giving me a better understanding of my thyroid, and I have learnt more here than I would have from any gp!, I have a lot more I don’t think you will ever stop learning.
always learn so much here, everyone has there own story to tell and the support is invaluable. and don’t feel alone with this condition which is so important when there is so much to understand thank you
Eve: It’s really helped enhance my knowledge of something I have had since I was 15 and really thought I just had to take a little pill every day and suck it up. There are now options for me! In less than a year (it’s only been a few months I have be pestering you all) I have had my adrenals tested, my vitamin levels checked. I have an endo appointment with a recommended endo next month. I am starting to understand test results! I am requesting print outs! I’ve even begun research into the next option – which is Natural thyroid extract (NDT). This forum, its members and all the advice has just been so fantastic! I finally understand something I have lived with for over 10 years which my NHS doctors have just down played. Most importantly I’ve learned that life isn’t supposed to be like this, and I now have the tools and options to fix it. It is not all just all in my head and far from it!
Tessi: Although recently joined, I realised that I was not going mad and others were suffering in the same way as I have. I have been at a very low ebb partly through not knowing what was wrong with me and partly because of doctors also not knowing but rather than admit that have blamed me for my health ie should loose weight; maintain my hygiene better etc etc. I am grateful for the knowledge and empowerment this site offers, and the faith that I will come to a positive conclusion and be able to move on with my life
Geraint: I was searching for answers to my newly diagnosed Hashimoto’s back in 2011, the knowledge I gleaned from this forum gave my doctor something to think about and has allowed me to take control of how to treat myself. My GP had one option, Levothyroxine, TPA forum opened up the options, vitamins, minerals, T3 and NDT. 4 years down the line, my profile picture shows my daily routine, thanks to this forum, I’m working, self employed so I can please myself and I’ve just started cycling again and hoping that my body won’t complain about it. So the forum has helped me get back to some form of normality an option not available on the NHS.
Alibaba: If I hadn’t found this website I would be still on T4-only, wouldn’t be able to get out of bed and would have lost most of my hair and would still be taking anti depressants and believing I was depressed. After posting on here I found out about T3 andmanaged to convince my GP to prescribe it for me. Thank you
Glynis: TPA means everything to me! I sat and cried when I realised I was not alone in how I felt. I too would still be taking useless levo if I had not found this site!! Now on several other thyroid sites I direct people here for specialist knowledge, the sort only other patients can tell you about!!