Ten years on - if only I knew then, what I know now. (warning - long post)

I attended a “well woman screening” in 1999. I had no reason to doubt anything doctors said so without doing any research or asking any questions I agreed to have a tetanus booster vaccination and 10 days later I was paralysed with Guillain Barre syndrome, It took around 5 years to fully recover. This was my first auto-immune disease.

Exactly 10 years ago in 2006 I started to feel quite unwell.

I was in utter disbelief that doctors were dismissive, condescending and full of unfounded arrogance. This was from the consultants too. Doctors are taught to listen to their patients, that the patient will tell you what is wrong. How dare they ignore me, I was angry. One endocrinologist even referred me to a Psychiatrist - I was unhappy but went along and the Psychiatrist confirmed that I just needed thyroid replacement! I had almost every symptom of hypothyroidism but was told that my thyroid was fine. I gained 4.5 stone, could barely walk, ached all over, was going bald, slept for 18-20 hours each day. I learnt that they will not diagnose you with hypothyroidism until the TSH blood test is above 10. For heavens sake how ridiculous is that?! Months became years.

So I have a second autoimmune disease - hashimotos. On a good day I would go out on my mobility scooter, using the blue disabled badge that I had to fight for. It was a high price to pay as the cost of seeing 10 specialists and a naturopath, herbalist and many other treatments, also being unable to work. I lost friends too as they just didn’t believe how ill I was, even my sister as she too believed what doctors were telling me. It sounds melodramatic but I really believe that the internet saved my life as total strangers would understand how I felt. I read hundreds of articles and blogs, researched studies, and collected dozens of books. I was severely depressed and even psychotic at times. I completely withdrew from life. I was in the bottom of a huge deep and dark pit.

I felt totally let down and really doubt that I would see my GP any time soon. My chiropractic adjustments are far more helpful. People say that everything happens for a reason and that something good will come of it, well after 10 years I can now say that lots of good things have come out of this ordeal.

With the help and support of my immediate family, and the people on the thyroid forums I very slowly climbed out of the pit. I eventually found a thyroid medication that I could tolerate. I had found an endocrinologist who had the appetite to help me, he listened to me, I would phone him every 6 weeks after blood tests and was in control of increasing the dose myself. I didn’t feel any improvement for 18 months but had no other choice but to keep taking the thyroid hormone replacement. My family used to drive to Sheffield to collect it until I finally encouraged my GP to prescribe it.

When my TSH was suppressed he didn’t insist to lower the dose, he put it in writing that it was unfair to try to control my dose when I had been ill for so long as I was more than capable in managing my levels. I still see him twice a year now, mainly to keep GP’s off my back as they would lower my dose. I do take another natural thyroid which I buy from USA which my GP will not prescribe.

When I started to feel better it was so gradual, I remember being able to sit in a chair without having to support my arms and head! I was 52 and could get through the day without a sleep!!! My hair grew back, I could walk without a stick. My skin softened, I was no longer depressed, I appreciated every day feeling well. Not a surprise but GP’s were still not interested in how I had become well! I made more friends and started hobbies.

I used to look out of the window and watch people walking past and could not remember what it felt like to walk unaided. Then when I became well we were able to go on a walking holiday in Scotland and a family trip to New York. It would take a week to recover afterwards but I was able to walk for miles. I was then asked to appear on “This Morning” with Dr Chris Steele and then to be a Trustee for Thyroid UK. I have met such lovely people whilst running a thyroid support group. It is unbelievable how many people are being let down by the medical system, I have met people who have lost everything as they are unable to work. Many people self medicate as it simply is their only chance.

I spent many hours researching health issues and naively thought it was just thyroid patients with problems. Dr Malcolm Kendrick convinced many of us at the Thyroid UK Conference that high Cholesterol does not cause heart disease. Big Pharma want us all to be taking them, they make a lot of money from them. They are harmful and dangerous to our health, the Statin Nation dvd is excellent in explaining how we are being conned, but people continue to have heart disease because high cholesterol is not the culprit.

There are two Ty Bolinger documentary series on “the truth about cancer” which is just brilliant, it is heartbreaking how the 1938 Cancer Act is still obeyed. There are several cures for cancer which people are not informed about. We are not given the choice because of this Act and because big Pharma make so much money. Big Pharma cannot patent natural herbs and plants. I follow many of the doctors and health experts who featured in the documentaries. There are some amazing doctors and clinics around the world who are saving lives and yet the establishments like the FDA in America do their utmost to close them down. It is just criminal what is happening out there!

So many people ask the questions - why have we so many more children being diagnosed with autism? why is there ADHD? Why do so many children and adults have allergies? so many different allergies now. Why are so many people gluten intolerant or coeliac? Why is there a huge increase in hypothyroidism? Why are people being told that they have IBS or fibromyalgia? why are many more women being diagnosed with breast cancer? Why do we see millions of £’s and $’s being raised by cancer charities and yet cancer is claiming so many lives. Why??? Well I have found out the answers to these questions and you can too. It has been a fascinating journey. So for us thyroid patients, we know what it is like to battle to get diagnosed and treated. Well I feel for all of the people fighting their health battles. The medical system is brilliant if you are broken and need fixing but not so good when it comes to disease as I and thousands of others have experienced.

Nutrition is absolutely vital and yet doctors only know a tiny amount of information on nutrition. 70% if our immune system is in our gut - Many people are misdiagnosed with IBS.

I will not take any pharmaceutical drugs, not even an paracetamol. I will never have another vaccination either.

The biggest catastrophe is vaccination. I have avidly followed the Vaxxed the movie every day for the past two months. The film was censored and banned from the film festivals but the team have shown it in dozens of towns around America. I have listened to all of the Q&A’s and not one single person who has seen the film (which includes doctors) have disagreed with the findings - why? because they are the facts, the CDC has fraudulently altered data in the MMR/autism study. A top scientist is a whistleblower, it’s a fact, not a conspiracy. Big Pharma do not want this to come out.

Thousands of parents of dead or damaged children are speaking out. Heartbreaking accounts of every vaccination there is. Hundreds of the military are affected too as they are forced to have vaccinations.

There are over 270 new vaccinations in the pipeline, and at the moment it brings a staggering $81 billion income just from vaccinations. They do not harm everyone, but nobody knows which children or adults they will harm, it’s a game of Russian roulette.

So on 1st July if SB277 in California goes ahead then nobody will be able to refuse vaccinations, mandatory vaccinations will kill or damage so many more. Other states will follow and then other countries. What will the world be like without freedom of choice? and so many damaged babies.

Why is this not on the National News??? well this is where it gets really scary - because Big Pharma pays their wages and can control News channels.

So for me - and it’s up to you if you don’t want to look into any of these issues further, it is a frightening time, I haven’t mentioned everything but it’s just frightening that vaccinations are not tested! The ingredients of each vaccination can be found on the information slip that is wrapped around the vile. All we have to do is convince the nurse or doctor to let us see it. It is a shocker! When you see the bunting up in doctor’s surgeries promoting flu vaccine and is available everywhere you go, just please do your own research before you allow that needle to go in.

So 10 years on - at 57 I so wish I had known what I know now 40 years ago!

I feel well, very well compared to 10 years ago but will I ever feel as well as I did before thyroid disease? I am working on it.

Sue

thyroiduk.org

19 Replies

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  • Great post Suze but sad too.

    Interesting about the tetanus booster. My son had one some years ago and he also had reaction to it. I never gave it a thought at the time but reading your post actually has made me think. His reaction was that his neck became so stiff he couldn't move it, it lasted a few days. Obviously not as serious as your reaction but he's been told he must never have another tetanus booster.

    He also, as a young child, had a very bad reaction to Septrin which was administered during a hospital stay and we knew nothing about it until his rash was so bad that the whole of his skin was solid red, nothing spotty about that rash. He's been told never to take it again.

    More recently he was vomiting blood following prescribed Ibuprofen, serious enough for hospital investigation and again told he must never take it again.

    I am in the age group for receiving the flu vaccine, I've had it once. I've since decided, after some reading, that I no longer want it. As I have a progressive lung disease I am in one of the at risk groups and getting flu could be very serious. When I declined the vaccination last October I was amazed when the nurse never questioned my decision nor remind me of the risk to lung disease patients - makes me wonder if they know more than they let on.

    My late husband had a rare form of cancer, had many rounds of chemo, stem cell transplant and radiation, all to no avail. My then GP, now retired, said if ever she developed cancer she would refuse treatment. Certainly makes you wonder what they're not telling us!

    Thank you for your post, it should make us all think about what we are being asked to take and question it.

  • I am happy to tell you if you message me. Sadly I think it is really difficult to recommend endocrinologists because whilst they can be really helpful to one patient, they could be useless to another. We are all so different!

  • No I hadn't had antibiotics, I haven't heard of that but will have a google thanks.

  • Hi Suze

    Thank you for sharing :-) So much of the content in your post is also on my reading agenda as it arrives daily into my Inbox and I sometimes wish I had more hours in the day !

    I think I too was vaccine damaged as my health went downhill after the BCG vaccination for TB in my early teens. At 27 I was diagnosed with ileo-caecal TB and was in hospital for almost 6 months resulting in 5 operations. So how could it be I ended up with an illness that I had been vaccinated against ?? It is a live bacillus I believe and lodged in my weakest bit ! Even the removal of my appendix at 17 did not arouse any suspicions - however abscess scars were found at a later stage behind the caecum. Another scandal !

    Then Crohns was diagnosed with further surgeries over the years. Hashimotos was eventually diagnosed here in Crete in 2005. Being able to learn from others that know more than me - I have slowly improved my health and am now feeling as good as I can remember. I will be 70 this year - so it has taken a long time :-)

    Wishing you many more years of improved health Sue .....

  • Hi Marz, Thanks, I met you at the Thyroid UK conference and you looked fabulous

  • Thank you. Yes I remember we met at the same breakfast table and Dr Kendrick was with us too :-)

  • I had tetanus booster just two weeks before my health went rapidly downhill. Didn't think that could be one reason. But could make sense. I was already feeling poorly with on going autoimmune issues no one told me about and tons of antibiotics.

    Had to get tetanus booster before travelling and I got very ill on our holiday. Now that I think back maybe it affected my already existing issues causing another flare up , far worse.

    I would now need a tetanus booster but I am not keen to take it all anyways :/

  • A brilliant read Suze, I also feel the same, I was left untreated for 10 years , I had all the symptoms of Hypothyroidism , I slept more than i was awake, i had a TT at the 10 year point and was put on Levothyroxine for 7 years which made me feel terrible. It wasnt until I moved house changed GPs and found this wonderful site that I started to feel almost human again. I would love to go back to my old surgery and shout at all the GPs that ruined 17 years of my life because their lack of knowledge.

  • Please could you let me know about the cancer treatments we are not being told about.

  • Have a look at ty bollangers website called The Truth about cancer.

    As there is a website and a book called Victory over cancer.

  • Hi mstp I am happy to share if you want to message me. I didn't want to make this post any longer.

  • Excellent post Suze. A number of good points made. Strangely enough, I had a reaction to a tetanus booster too and was told not to have another.

  • Thank you for your brilliant spot on post up Suze.

  • Hi Suze,

    Thanks for a fab post which will help others to keep battling on.

    Who is your endo in Sheffield? I see an endo at Royal Hallamshire and would like to know if it is the same one and, if not, I might try and get referred to him because my endo has just taken Armour off me after nearly 18 months and I need it as part of my thyroid cancer treatment. The cancer hospital have refused to prescribe it and instead I'm just on synthetic T3 which, when my GP finds out the cost will probably be withdrawn too. I lost my job to the cancer and I don't have the funds to by private prescriptions so getting someone else on my side might help. Please PM me!

    Thank you.

    TT x

  • How absolutely shocking!!!

    I will pm you later.

    Sue

  • Thank you for sharing your story. I've thought much the same about vaccinations and drugs for a long time.

    In desperation, I went for reflexology last week and the tender areas of my feet didn't correspond to my thyroid. They were related to my stomach and intestine. It wasn't the relaxing experience people report; I had a headache within 10 minutes and it lasted all weekend. The reflexologist didn't provide any diagnosis - they're not allowed to - but now that things are starting to settle down, I feel better than I have for years.

    Bx

  • Hello Suze, you are a very brave woman, and pointing out so many things that are hidden from patients is disgraceful. When we question the doctors don't like it, they just want mute patients who do as they are told,,, no brains needed,,,just keep taking the tablets,,,then they have to start working on fixing the things that have gone wrong because of the medications they told use to take,,,,

    #1 the most disliked drug is Statins and the worst for causing so many other conditions, including T2 Diabetes,,, where do the patients go from here???

    Thank you for the post, I read it all with interest,,and doctors don't like it when you want help and answers at the same time,, and the "normal levels" for thyroid tests are only a guide but so many doctors use them as bats to keep you away,,by the time the numbers they think they should work with and from arrive,,a lot of damage could have been done to the patient. Will keep reading as there is always something to learn,,,ttfn from Karen.

  • Fabulous post! Passionate and well-informed. I, too, have withdrawn from life, I am reclusive, agoraphobic and burdened by just about every hypothyroid symptom going. However a mere 12 days into levothyroxine treatment (100mcg) I'm starting to come back to life. I feel 'brighter' and more alert. My chronic symptoms are beginning to ease. AND I'm losing weight at long last, having relentlessly gained eight stones despite all my best efforts to diet. I am a longtime vegetarian and low-carber. I supplement daily and (mostly but not 100%!) eat for health. At last the weight is shifting. I wish I'd been diagnosed a lot sooner - but I'm delighted to be responding well to treatment. Long may it last LOL x

  • Be as informed as you can to ensure that you get better. Your free t4 needs to be at the top of the lab range, your free t3 around ¾ and your ferritin, folate, vitamin d and b12 tip top!

    Sue

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