This website is dedicated to the millions of thyroid patients who are being ignored and left to suffer unnecessarily, and to healthcare practitioners, who want to better serve those patients.

The Many Benefits of Joining our TPA Online 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 need to look no further than Thyroid Patient Advocacy Website and Online Support forum. You should find whatever you are looking for 24/7. Whats more, all the information you will find here is given freely as we appreciate the majority of you have been forced to leave paid employment because of your continuing wretched health – trying to survive on State Benefits.

Our main Thyroid Support Forum not only allows members to tap into the pulse of all things happening in the niche of thyroid and thyroid related disorders, but will increase your knowledge and knowledge is power. The more people talking in our forum, the more they will be able to keep abreast of the most recent research in this field and medical practitioners can gain information direct from their patients who are voicing their real concerns.

Everybody is welcome.

Below are a just few of the messages written by Members giving feedback on the many benefits they have personally found by joining our Forum.

Lindilou wrote: 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 wrote: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 wrote: 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 wrote: 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 wrote: 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 wrote: 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 wrote: 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 wrote: 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 wrote: 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 wrote: 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 wrote: Finding 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 wrote: 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 wrote: 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 wrote: 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 wrote: 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 wrote: 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 wrote: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 wrote: 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 wrote: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 wrote: 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 wrote: 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 wrote: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 wrote: 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!!

If you are undecided about whether to join our forum, why not first give it a try and see what you think. I doubt that you will regret it! http://www.tpauk.com/forum

 

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Previous comments

I have had no help from the NHS, and wasted away until I became bedridden. Eventually with the help of a naturopath, I began to recover. However, my energy eluded me. I was still extremely fatigued, with a host of horrible symptoms to contend with. I eventually found out about Dr Peatfield, and saw him. It was soon after that, that I found TPAUK. It was a huge relief to find people who understood that I was struggling, and WHY I was struggling too. My TSH value is all that the NHS is interested in, and mine is ‘in range’. Well, if nothing is wrong with me, why am I so tired, bloated with myxoedema, fatigued, bowel issues, gynecological problems, ridged nails, damaged hair (never used colour or chemicals in my hair), dry skin, confusion and forgetfulness, swollen tongue, ulcerated tongue, feeling cold all the time, severe pain along ear and neck if in any kind of draught, low blood pressure etc.?

TPAUK has a wealth of resources, has a founder who is determined to see change happen in the way people are treated, and offers respite from the lack of care most of us here have experienced. We share information that is helping us heal, and helping us to understand what true health is all about. We also meet people who know what it is like to be discarded, ignored, ridiculed or undermined by some doctors, friends and family. Hypothyroidism is never featured on any trendy campaigns, urging people to become aware of it. Same for Adrenal Fatigue, which goes hand in hand with hypothyroidism. It’s as if hypothyroidism and adrenal fatigue do not exist…until that is, one becomes affected by either or both, and everything changes. TPAUK understands how awful these problems are.

Thank you for this site, Sheila. :) xxxx

unsloth,

I’m slowly weaning off my thyroxine. I found a really good Chinese herbal doctor. Lost 2 stone in weight and my organ function is far better now than before. On top of that. Cannabis helped a lot with my condition followed by the yin yang diet. Temperature is everything! Hypo patients need heat! Hyper patients need cold. There are foods that produce cold and heat. So hypo patients start detoxing your organs. Clean up your diet. Eat plenty of lamb and beef and other foods in the yin category. Drink lots of ginger and lemon tea. Visit a good Chinese doctor. You will feel much better and either come off the meds or see improvement or both. Eat more. The more you eat the good stuff the better you will feel.

Charlie Farley,

I’m slowly weaning off my thyroxine. I found a really good Chinese herbal doctor. Lost 2 stone in weight and my organ function is far better now than before. On top of that. Cannabis helped a lot with my condition followed by the yin yang diet. Temperature is everything! Hypo patients need heat! Hyper patients need cold. There are foods that produce cold and heat. So hypo patients start detoxing your organs. Clean up your diet. Eat plenty of lamb and beef and other foods in the yin category. Drink lots of ginger and lemon tea. Visit a good Chinese doctor. You will feel much better and either come off the meds or see improvement or both. Eat more. The more you eat the good stuff the better you will feel. I have far less symptoms. No more heart attack threats either! I am doing all I can not to be a big pharma customer and I am all for legalising cannabis and that should be a choice for all patients!

Charlie Farley,

As many others on here I can only reiterate what everyone has said . I too had been going to the GP individually for probably every hypothyroid symptom there is , and coming out feeling ‘ a fraud ‘ and maybe I was fussy , and it was all in my mind , perhaps I should shake myself and get on with life .. but the thing is , you can’t , because you’re ill , and to find this site with other people feeling as you do , and worse, is more than a huge relief . It gives you the will to pursue a normal life again , and not look at others with envy at their energy and joie de vivre . No it’s not a two minute cure , there are things that take time and hurdles to get over , but it’s do-able . Doctors do their best .. sometimes , but as far as thyroid problems , they are way behind , blinkered to their test results , which only paint a fraction of the full picture . Speak to people on here , who have personal experience and knowledge that you can rely on . Doctor P and the late Dr Skinner are pioneers and sadly there are not enough like them , there desperately needs to be. My only regret is that I didn’t find this site sooner , my life would have been very different if only I had …

JuneP,

Can some one help me please I’m sorry to sound so stupid but I can’t work out how or where to put my questions and blood test result on this website and I don’t want to speak to my doctor again until I speak to someone who will listen to me a
nd who’s more knowledgeable regarding thyroid

Jessica Marie,