Help! I'm a monster!

Hi everyone, I always get such amazing advice on this forum I'm back for more...

I've spoken before about how I went to see an NHS endo six months ago who insisted I stopped taking the T3 I'd been prescribed by a private doctor (who told me three years ago my levels were 'disastrous'). He says my body should be converting on its own, but the bottom line is that looking back on previous tests, it clearly doesn't (why on earth are NHS doctors so down on T3? Is it a cost thing?).

Anyway, since then I've been feeling pretty dreadful but it's taken a turn for the worse in the last month. As well as putting on around a stone this year my PMT has been totally out of control. My period isn't due for another week but I've already had a week and a half of breakthrough bleeding, pain and mood swings (sorry if TMI). Now I'm sitting here trying to decide whether to cry again or bang my head against the wall, and I've potentially got another week of this to go. My skin is terrible, I've got no energy and I want to eat everything in the pastry aisle of my local Tesco (and then start on the crisp section).

I went gluten free for the first three months of the year and then fell off the wagon (after gaining weight), which I suspect isn't helping matters. But it's hard to know what's causing it all and I can only think it's not having the T3.

The last private doctor I went to see cost me £2500 so I can't afford to go back and get more tests done, and my GP isn't great. In my opinion it's pointless going back to see the endo. I've had two appointments in a year and a half, he never asks for blood tests in advance (I have to go to my GP and insist on them) and I've ended up feeling worse than ever.

I'm hypo with Hashimoto's and leaky gut and don't really know where to go from here. I feel pretty exhausted with it all. Has anyone been helped by a nutritionist? I'm wondering if that would be a good next step.


Featured Content

Join our community

The community helps everyone affected by thyroid conditions by providing support, information and guidance.


Featured by HealthUnlocked

80 Replies

  • That's terrifying, and will surely end up costing them more if people get really sick!

  • If they want to control the population, there are much quicker ways of doing it than denying hypos T3. I doubt that's true. :)

  • Why do you want to know? lol Are you considering having a go? :)

    Well, I'm not sure, but there's got to be, because dying of hypo takes a long, long time. It's not exactly an instant death. You gradually get worse and worse, and your organs start to fail, and if one of them doesn't kill you first, you will go into a coma and eventually die. It's not cost effective! lol

  • Maybe they don't want us dead , just too tired to give a ....

  • Oh, yes! Definitely. :)

  • Delicious21,

    Hypothyroidism occurs primarily in women >50 so it wouldn't be very efficient population control.

  • Delicious21,

    I fully expect to collect my pension. Hypothyroidism is rarely fatal these days.

  • It's not just the Hypo/T3 scenario that lead to such speculation. It's everything else combined.

    Pharmaceutical companies now have a rep on the Board of NICE. Our GP's are bombarded with Pharma salesmen, and reach for their prescription pads as soon as look at you. Doctor actually means 'teacher' when did our doctor's last teach us anything!

    What about Government QOF payments to GP's/GP practices. Incentive payments to get us all on meds. Ever wondered why so many are on antidepressants?

    What about the Govt health advice dished out for the last 40 years that we have brought out children up on: Low fat industrially produce polyunsaturated oils and high carb, leading to massive rises in infertility, heart disease, diabetes and cancer to name but 4 and so further lining the pockets of Pharma.

    Statins!! and now out of patent watch out for the new drug to replace.

    The vaccine schedule for newborns and children. This is a biggie with me as my daughter inlaw is pregnant and the hyperdermic wielding nurses are so pushy if pregnant mum declines " well, you might die, your baby might die!" For goodness sake what happened to fostering and nurturing, keeping mums to be stress free. Cause an inflammatory response in mum (which vaccines obviously are intended to do) causing an inflammatory response in the fetus - lets just create organ and brain damage!

    Have you seen the vaccination schedule for 8 week old babies in the UK! 8 vaccines at 8 weeks. All full of adjuvants like aluminium and formaldehyde. Poisons in otherwords that the baby's immature liver has to get rid of out of their tiny body. A baby's immune system is not fully functioning until 2 yrs old and that's if breast fed. And that's just the recognised dangers. They now know that putting tissue from monkeys/dogs/and aborted human fetuses causes contamination of the baby's cells with the foreign DNA and scientists haven't a clue what ugly result that will cause to future generations.

    Anyone see THe Truth About Vaccines documentary series this month?

    The higher the number of vaccines given in the 1st 12 months of life, in a Western industrialised country's vaccination programme, the higher the death rate. Corelates exactly. The US with 26 vaccines in the first 12 months has the highest death rate closely followed by the Stupid UK as we always have to follow the US. UK 20 vaccines and lowest death rates are Iceland closely followed by Norway who have 11 in their schedules.

    The Japanese had a programme of No vaccinations until 2years of age, recognising the immune system isn't fully functioning until then. And the death rate dropped dramatically.

    Correlating also is the rate of autism. Last statistics 1 in 50 children in the US have autism, in the 1980's it was

    1 in 10,000. It is expected to be 1 in 25 this year when stats are out. If there is no U turn in policy it will be 1 in 2 and the country will cease to function. Now come on!

    Are we being manipulated and controlled - the evidence seems to suggest it, I'm not a conspiracy theorist but I think, you bet we are!

    Sorry about the underlining - don't know how to delete it.

  • This is not helpful. I have a child with severe learning disabilities & autism. Many children will suffer from horrible diseases such as polio & tetanus which have been virtually wiped out in the U.K. Vaccines have been known to protect the general population. We don't need AntiVaxxers ranting about this. It's serious & kids are protected by vaccines.

  • Sorry to have offended you. Heart felt apologies. I am not anti vaccination. I was referring to how things have got out of control with escalation of prescribing whether it be vaccinations or prescriptions for meds. In agreement with comments that had been made about population control. I think what is happening is scary, whether it is all these prescriptions and the pharmaceutical industry (which exists to make billions in profits, it does not exist for a noble cause) and they are having such influence over how we are treated. I personally think we have to learn for ourselves, and gain as much knowledge as possible about what ever affects us because our trust can be misplaced.

    I am sorry, I did labour the point about vaccinations that is because my pregnant daughter inlaw was worried almost into having vaccinations while pregnant. In my day we didn't take anything when pregnant as the thalidamide drug and the damage it caused was still a memory. Those poor women who just had morning sickness had complete trust and look where it left them and their damaged babies. Other such drugs too. And so as so close to home at this time I research and try to find out as much info as possible. And then am shocked at the info I find out and of how people like me and my daughter inlaw are so unaware. I have an autoimmune disease as many people on here may do re autoimmune thyroid issues. Because I continually research my own health situation, I had listened to and read published research papers of one of the World's leading immunologists, Professor Shoenfeld and his concerns re vaccination when there is autoimmune in the family. He is not anti vaccination obviously, he is an immunologists but he has concerns in certain situations. Having autoimmune disease in our family therefore this info is going to make me want to learn more inorder to protect my family. My children were vaccinated, but my daughter had only one whooping cough as the vaccine created brain inflammation resulting in inconsolable crying for 24hrs following - I had no idea what I was dealing with as had no background knowledge and just went along with the herd mentality and trusted. And on taking her for her 2nd of the triple, just because I felt chatty commented about hoping to get a good night's sleep. Thankfully the doctor paused needle in hand and referred us to an immunologist. Who explained her reaction symptoms and that each successive whooping cough vaccine is tolerated worse not better as I had thought. My little 3month baby had suffered encephalitis provoked by the vaccine and further exposure to that vaccine could cause brain damage. I still took her and my son for their other vaccines though. I am not anti vac even though my soon was really, really ill with the live virus MMR and foll a vaccine when he was 3, he regressed and completely stopped talking, eventually he regained but with a really bad stutter that he overcame in 6 months. As an 18yr old he had another really bad reaction with the Hep B vaccine which he had been given as his part time job while in 6th form was in a hospital. Now I have learned more and realise the concerns there can be over vaccination especially if autoimmune disease affects the family history, perhaps my children should never have been vaccinated. It is always a difficult choice. But the vaccination schedule today is massively greater than during my children's babyhood and childhood. And perhaps today with so many vaccinations, they may not have been so lucky. My concerns led me to spend well over 10hours listening to the doc series The Thruth About Vaccines inorder to gain more insight and I was overwhelmed by what I heard about the industry practice and also statistical info and pedeatricrians experience with more friendlier vaccination schedules and where unnecessary vaccines were ommitted.

    Rotavirus, a sickness diahorrea bug that they now vaccinate for at 8 weeks (Rotavirus which it was said most chidren suffer from, but is not life threatening and worse case scenario a baby would need fluids re dehydration) Rotavirus because of the vaccine has now mutated and become far more virrulent and dangerous and life threatening named Norovirus - the scourge of hospitals because is untreatable. I felt positively sick when I heard this because my father died because of Norovirus that he picked up from another patient on the hospital ward. Not everything about vaccinations is good as with everything else.

    But what we do need is to become informed and strive to be knowledgeable so that we can make those very important choices. Whether it's about Thyroid medications, what is healthy for us to eat, as with a multitude of other things and including vaccinations. Mentioning the documentary series gives people a helping hand pointing them in the direction of where they can listen and learn, take on board or dismiss. Just like i would post where I bought my probiotics from and which brand. This site is about helping one another to learn from one anothers experience and where they accessed info.

    Sorry again for upsetting you. I worked in Primary school until recently, my role to empower parents. I raised funds so that I could take parents of children on the autism spectrum whether it be Dyslexia, delayed development, ADHD, ADD, Autism to the World Conference held in Edinburgh that particular year. Lecturers and Practioners presented from across the world who practised outside the box. We were blown away by the information we learned and on return I implemented across organisation agency with parent, teacher conferences within our local family of schools with leading CAMHS psychiatrists and clinicians to create best practice. Also citywide support networks for parents and children. I believe in finding information, finding the truth and acting on. I am not anti anything except complacency and lack of access to knowledge.

  • Please don't worry I don't offend easily. We delayed the MMR vaccine for our youngest until he was 4 but he was severely learning disabled & autistic by then anyway. I've also worked in the Pharma industry for over 20 years. It does get a bad press & yes for sure there may be some who are unscrupulous in claiming a drug costs as much as it does. But from personal experience I know the amount of research, development,toxicological testing & scrutiny by regulatory authorities is required before a drug can even be licensed never mind marketed. The UK is one of the few places in the world where there is such scrutiny but I do agree that there is a mismatch between NICE guidelines & prescribing practices between GPS. And in that regard it is a bit of a lottery how well you are treated on the NHS but private practitioners can be unscrupulous as well stringing out unnecessary treatment & indeed providing the wrong treatment too. It scares me to death that there are people taking T3 sourced from places such as Thailand where there isn't the level of scrutiny on drug manufacturing. I know they are desperate to be well & stay well... so I can't blame them . LynneG you've obviously done your research which is heartening & yes vaccines are there to protect the general population & take up should be cautious where there is a known family history of adverse effects or indeed where a child is already compromised with a health issue. But the fewer people who take up the opportunity means the people who can't take the vaccine stand a much higher chance of getting the disease & suffering serious consequences.

  • Hi, interesting conversation we are having. Warning: this post is very long :) A good way to learn from other people's worked placed as well as other experiences.

    I suppose I never questioned and differentiated between vaccines - they are supposed to be for the common good - right. Until they brought out the flu vaccine. Hold on a minute, I question? I had known for years previously re how the strain alters and mutates. So any season we can be dealing with a different strain and within that season it mutates. So where's the thinking behind this, they are just guessing. This is accepted fact. So what is the point of putting yourself at risk of all the other ingredients in the vaccine which your body then has to deal with for a guess I asked myself as my parent's who had never had flu, were targeted at age 65 and vaccinated. Cold symptoms excess mucus and stuffines with aches and pains and high temperature is not flu, people call it flu, but it's not flu - I question and look at the notorious Spanish Flu during WW1 that killed more people than the war - that was flu.

    So I look deeper. Listen to Science Now, documetaries. I do some research - Aluminium is known to affect the brain, replaces magnesium needed for a healthy functioning brain by attaching to the same cell receptors and so displacing Aluminium. When a body is attacked by what it sees as a poison (the adjuvants in the vaccines, put in there to create an immune reaction (thats the principle behind vaccines) Macrophages gobble up the invading poisons to isolate and protect the body but Macrophages can cross the blood brain barrier. A Macrophage can't live forever and eventually will explode and spill it's contents in the brain if that's where it happens to be. Open the door to brain inflammation, brain damage. Yes other vaccines have aluminium as an adjuvant (really worryingly as they now use more aluminium because Thimerasol/ mercury has now been reduced to 'trace amounts' as a preservative - note trace amounts add up. 8 lots of trace amounts given to that immature immune system of an 8 week old baby that is. And further trace amounts a few weeks later and again. Which is why thought should be given as to the age related timing of the schedule and the number given at any one time. A childs body may deal with one vaccine and its adjuvants of heavy metals and alien organic substances that it needs to deal with but a baby with 8)

    But to get back to the flu vaccine - that's given every year. This aluminium/macrophage scenario onslaught is happening every year. This is why years ago, speculation in the scientific community arose and it was said, 1flu vaccination every year for 5 consecutive years and Alzheimers development was inevitable. This information seems to have been swept under the carpet and the flu vaccination schedule now includes babies, pregnant women and children.

    It is not the over blown price of vaccines to the NHS that concerns me but the escalation of and targetting as a way of pharma reaping more profits.

    It's not vaccinations per se that I see as wrong but the shcedules, the age targeted and the number of unnecessary ones.

    The live nasal flu vaccine given to our 2yrs + and school children(inhaled up the nose - omg, couldn't be a more direct access to the brain through the nasal mucosal tissue. Think! are smells ever seen to affect the brain? - of course they are, that is why certain smells evoke memories - direct access) Then our lovely little children having received a live vaccine - shed it, shed the virus for a minimum of 38days. I used to think until I dug deeper that you had to come into contact with the vaccinated child to become exposed. Not so. The child leaves the virus everywhere it goes, in all the rooms, transport, everywhere. I go to see my friend, her grandaughter was at her home 10 days previously - she left the virus all over my friends home. No wonder my husband became really unwell following the visit. I know there is concern from parents who's children do not have the flu vaccine (for whatever reason) I have seen the Govt guidelines that have been issued to Headteachers about policy re authorised absence requests of non vaccinated children. It is determined by policy that the risk is similar to being exposed to natural flu or any other childhood virus that is running its course through the school population and no authorisation is to be granted.

    So it is no wonder in the autum following mass vaccination so many colds and flu symptoms abound in the population at large.

    Similarly the live MMR. I have learned that the protection I developed when I caught the natural wild measles when I was little will not protect me against the vaccinated strain because it is different. And I also learned that the MMR vaccinated children create the largest number of children succumbing to the vaccinated strain of measles. Also that scientific studies show that natural immunity created in the population that caught the wild measles offers protection against many forms of cancer in later life.

    The questions and answers are nor quite so obvious and you have to dig deep into the research.

    I have a love of history. If you look into historical documents, accounts of people present at the time of the notorious Smallpox epidemics in the mid to late 1800's. Leicester was significant. Vaccination spread the disease like wildfire. It was improved hygiene/sanitation and care and isolation of the patients and the enforced halting of vaccination that wiped out the epidemic. Leicester was one of the cities who had enforced vaccination of the then smallpox vaccine used and anyone not complying were fined heavily. Look online you will find the accounts of the time. I was vaccinated against small pox and my parents when I asked about my vaccination scar could not have spoken more highly of vaccinations and how it had wiped out smallpox. And yet even in the 1960's the only cases and deaths recorded were of vaccinated children. The vaccine gave some children smallpox.

    Jenner himself vaccinated his and his neighbour's child every year with the then crude cowpox vaccination. Today there is a hypothesis that the cowpox vaccine is linked with the contraction of TB/probably to do with immune function. Jenner's son and neighbour died of TB at age 20, 21.

    I will post a link from a BMJ discussion Mentioning cow pox/smallpox TB link and similarly MMR linked to other present day conditions.

    These contraversial ideas, hypotheses are happening all the time within the scientific and medical communities and we have no idea. We the public think everything is fine and dandy because we are told it is so. But nothing is steadfastly true and knowledge is changing continually.

    As in the finalisation of the human genome project was it 2007 - 10 yrs ago. Science thought it would provide the answer to everything. But it just illustrated how very little we know. A human has approx 22,000 genes - similar to that of an earthworm. OK something wrong there! Turns out we have our gut microbiome - our beneficial gut bugs whose influence we are dependant on for what we think, who we are and our health and function. Scientists speaking on Radio 4 years ago laughingly explained the fact that we are just bags of bacteria and micro organisms walking about having a human experience. Their cells outnumber our human cells by 10:1 and their genes at a minimum of 100:1. We have evolved symbiotically together, Their genetic expression controls our function and human gene expression for the good of the whole. Great! however this unthought of anomally was never considered when introducing vaccines or antibiotics (there are also antibiotics contained in vaccines) Antibiotics = antibacteria, the very life form we depend on for our lives. Our mitochondria too - multiple mitochondria in every cell. Mitochondria are single cell life forms thought to be the very beginning of life. When the concept of vaccinations and the adjuvants contained there in were founded humans were ignorant of what they are now learning. We need to learn and continue learning for the sake of our children. Concepts and practice changes continually, old ideas are swept away.

    As with the recognition of heart attacks in 1911. practice: 6 weeks complete bed rest following a heart attack. This care continued for 50+ years and killed billions of patients over that period. Until NASA with it's space flight studies recognised that it's 20yr old fit strong male research volunteers heart's started to deteriorate after only 2 weeks bed rest. Not a word was said to the public just practice changed and nurses were getting you out of bed asap into the newly aquired armchair that suddenly appeared at the side of each bed.

    It's fascinating and we need to keep up.

    Have you heard of the Scottish neurosurgeon/neurologist Dr Natasha Campbell McBride. Her work with children on the autism spectrum. If not please consider googling her work. Her baby developed autism. Her books are available on amazon and no doubt you tube videos

  • Clutter But they succeed in removing T3 from prescription that could soon change!

  • @Clutter, but does it or does it just take that long for it to show in the bloods....I was diagnosed aged about 29/30 but had had goitres for at least ten years before, and actually, with hindsight and what I know now, probably grew up with it - possibly form birth.

  • Jojozo,

    It will help members advise if you post your most recent thyroid results and say what dose Levothyroxine you are taking.

  • These were the results from around six months ago, before I was told to stop taking T3. My levels and dose were definitely too high but it seems crazy to cut it out completely in one fell swoop and then not do any further tests. My Serum TSH has been 0.01 for about two years now. I'm currently taking 150mg of levythyroxine.

    Serum free thyroxine - 19.0 (12-22)

    Serum free triiodothyronine - 12.2 (3.1-6.8)

    Serum TSH - <0.01 (0.27-4.2)

  • Jojozo,

    If you left 12+ hours between your last dose of T3 and blood test you were very over medicated. Reducing your dose would have been sufficient, it wasn't necessary to take you off T3 altogether if you felt well on it. Your endo was probably one of those idiots who doesn't approve of T3. It is very wrong that your thyroid levels weren't checked 6-8 weeks after you were switched to 150mcg Levothyroxine. You ought to ask for a thyroid test to check levels.

    If you have leaky gut you might try 100% gluten-free again. G-F products have a lot of sugar in them which may be why you gained weight. If you cook from scratch avoiding g-f products you might have more success.

  • Thanks so much Clutter. I did wonder about the sugar thing! I also quit drinking in January so I was dealing with sugar cravings too, so it was a double whammy. Thank you for the links as well, they're really helpful.

    Both my GP and the endo seem very anti-T3 and think my body should be able to do the job, but it doesn't appear to be. I'm seeing the endo again next month so I'll request some tests beforehand and see how helpful he is. If I feel like it's pointless seeing him again (which I kind of already do) I'll have to go further down the self-healing route, and also try and find a cheaper private doctor if I can get some money together.

  • Jojozo,

    There's a big step between what should happen and what does happen.

    I would get your thyroid levels checked and if FT3 is low and endo and GP won't prescribe T3 you could buy online and self medicate. You can order private thyroid tests to monitor your levels via

  • Brilliant, thank you. I have to insist on the FT3 being checked because my GP doesn't like doing it but I'll put my foot down!

  • Very interesting. It's no wonder so many go private. I know millions of people have thyroid problems and it costs the NHS a fortune, but if they got things sorted out and got people on the right dose I'm sure it would end up saving them money!

  • Quite right Jojozo They waste far too much money issuing antidepressants and 'pain killers', testing for this and that, other than dealing with the real problem. They could save a fortune, I'm sure, if they took their heads out of their backsides and listened to patients and consider for a minute that some of these other 'better informed/trained' dr's might have a point, and/or the patient, even!

  • I've lost count of the number of times they've tried to put me on antidepressants over the years. If they got my thyroid medication to the right level I wouldn't be low and tired all the time! Also, when I mentioned to my GP I'd been diagnosed with Hashimoto's via some private tests she asked me what it was. Eek.

  • Jojozo it really doesn't surprise me that GP didn't know. I recently saw a GP who had not idea what T3 was. I spoke to another more senior GP and mentioned this, (along lines of I was seeing him as she had mentioned she did not know what T3 was so I felt he may be better placed to help me if I have cause to need meds adjusting) He said he was sure she did know what T3 was. (Obviously I was on another planet having that conversation with her then?) Got my medical 'summary' - saw note written by this same Gp who 'didn't know what T3 was', saying how I had said I was 'better since starting T4' NO!!! Should have read since starting T3! (proof that 3 years ago she did not know about t3 either!!)

    This is what we are up against. Lack of training and incompetence and supposedly senior Gp's who refuse to see failings!

  • Oh dear! It is an uphill battle isn't it? My mum's just been referred to an endo for the first time ever after she began suffering with thyroid eye disease. She's 70 next week.

  • The GMC are there to protect doctors, not patients.

  • But only after the whistleblowers have had their careers blighted and the trusts/surgeries have covered up as many complaints as possible. Most of us are way to ill to pursue a formal complaint so just like the surgeons in the news this week it takes years to get a doctor suspended so that the complaint is heard.

  • delicious21 yep - because they dare to think for themselves... More 'Control'. Healthcare is going backwards, fast, because of it!

  • delicious21,

    Remind me how long it took for Shipman to be struck off?

    He was suspended on Saturday 12 February 2000 - 10 days AFTER he had been found guilty of 15 murders.

    Even then, his erasure from the register would not come into efect for another 28 days.

    And even this incredibly delayed action on got thios far because Shipman's lawyers dod not insist an the usual six week delay.

    If the GMC were for the benefit of patients, Shipman would have had his registration suspended from the first serious allegation and police involvement.

  • Hi delicious21 - I said exactly the same as you when the local hospital lab refused to do T3.....and then refused to test for Vitamin D for over 18 months even though my GP requested it !!! I was actually given the print off that was sent to the GP which recorded "patient does not meet criteria for Vit D testing. At the beginning of this year I pushed again for it to be done. They did it.....I am now "severely deficient " ( reading of 8 !!!!! ). Guess who now has the info.....and the evidence for a formal complaint. In our area it is definately the labs that refuse GP requests for certain blood tests.. As you say whatever happened to first do no harm. 😨

  • Hi bernie51 I hope that complaint is on it's way! If they keep getting away with it they will only continue. Despite feeling like c*** and wanting to just curl up...unfortunately we can't afford to... if we don't fight for the right for better thyroid treatment for ourselves and our children who will?

  • Hi again delicious21

    My complaint is stacking up as I am now having to wait for "the bone man" at my local hospital to advise GP how to treat me ! I didn't get a copy of the guidelines for Vit D testing....but can you believe this ....when the young GP in my surgery kept pushing them to do the Vit D test they had the audacity to send her the guidelines! Thankfully she still pushed them and they finally did it. Unfortunately we don't have a PALS service at all here in Wales.....why doesn't that surprise me! Although I don't know how effective they are in England. I have to say I love your style and wonderful description in dealing with them and the rest of the tin gods . Did you actually get what you needed from them in the end ? Hope you don't mind me asking but how low was your Vit D ? I have no idea what the protocol here is for dealing with severe Vit D deficiency. I have heard of a Dexa scan but so far it has not been mentioned that I have one done. .....but then that would probably cost them more money....and hey-ho.....I am only a patient after all....and they don't care about us do they !!!!! Oooops - rant over. 😀😀

  • bernie51 I discovered that the reason for doctors sending me for Dexa scans was to get me off (self-medicated) T3 ... they don't want any responsibility and just want to cover their back and protect their job. As always.

  • cinnamon_girl

    It is crazy isn't it....they give you a dexa scan to cover their own backs but don't do one on a patient that needs one because THEY didn't test for Vitamin D nearly 2 years ago. NHS getting more like Faulty Towers by the there a Manuel out there !!!! 🌻

  • You are so right UrsaP people do need to complain more. But as you say they often feel so ill because they are not getting the correct treatment/diagnosis/tests that they need that it seems such an uphill battle. The young GP in my practice has now consulted " the bone man" in our local hospital to see how I should be treated !!! I am still waiting to hear. 😀

  • Re leaky gut what have you done about it? I followed DrMyhill's website advice but found that no soya etc lead me to the autoimmune protocol (see Sarah Ballentyne and Mickey Trescots website) that is actually much more palatable. Gluten doesn't really suit a lot of us and most of us could do with a probiotic more powerful than we can buy so end up making kefir. If you are intersted microbiome summit 2 is just starting that should have some helpful info.

    Sorry to hear about symptoms.

  • Thanks so much Cwill, I'll look into all of that. I think the main thing I need to do is get my nutrition sorted out and accept that going gluten free doesn't automatically equal weight loss if you're snaffling GF shortbread (as lovely as it is).

  • I am off all grains and the bad news is that sugar feeds the wrong stuff in the gut. I am on just two portions of red berries a day as my only sweet stuff and have done this for the best part of 8 years. But having finally sorted my SIBO I can now have coconut milk that is sweet enough for me. The majority of the GF replacements looked too much like a chemistry experiment for me to have very many.

  • Wow, that is strict, but it sounds like it works for you which is great. I did read that a lot of GF food has got more dodgy additives than standard versions. I think it's all about trial and error for me. I used to drink a lot of Diet Coke (terrible, I know) and then worked out that it gave me sinusitis. I strongly suspect gluten is what's making me tired and bloated. It wouldn't be much of a surprise I guess!

  • delicious21 Jojozo And isn't aspartame banned in US for last few years for that reason?

  • It is almost 100% unhelpful to fail to identify a "certain brand" - why not simply name it? It is not as if such information is not available if we know where to look. As I do not know what product you are referring to, I cannot do so.

  • All you are doing is saying "Product X contains ingredient Y".

    I am not taking any calcium products at all.

    I don't quite understand your problem in naming the calcium product - you have already identified Diet Coke as containing aspartame and said that aspartame is "neurotoxic, nephrotoxic, just generally toxic." I'd say that was pretty negative.

  • What calcium product are you referring to?

  • Seeing as Coca Cola's own website proclaims aspartame as an ingredient, that seems unlikely!

  • UrsaP's comment:

    And isn't aspartame banned in US for last few years for that reason?

    is highly unlikely.

    There are several reasons I do not consume any Coke drinks - you have rightly identified one of them. :-)

  • If aspartame were banned in the USA, I can't see Coca Cola telling everyone their products contain aspartame. It would be admitting an illegal action.

  • Yes - USA Diet Pepsi no longer contains aspartame.

    BUT - many other USA Pepsico drinks DO contain aspartame. Including their relatively recently launched Diet Pepsi (Classic Sweetener Blend)

  • We can be pretty sure it is not in our interests.

  • My advice to you is to tell your endo where to go, and if I was your husband I'd knock the lieing so&so on his arse and happily face the conciquences!! ... It's all about money and underhand tactics of the government to get people off T3 ...

    Buy your own T3, get your own private bloods done and come here for advice, and tell your endo and Dr exactly where to go quite loudly!! we will help you dear!!!! The treatment of people like this makes my blood boil!!!!

  • Quasarlis Here here!!!

  • The bottom line is that surgeries have become businesses with CCG's having far too much power. They need to be put back in their box and made accountable in the same way that every other job is.

    Edited to add that the Partners of my GP surgery have instructed GPs not to treat/investigate Lyme disease patients.

  • delicious21 how sad to see such a change for the worse, how do these people sleep at night?

  • delicious21 of course if I asked if that was the case I would be told a pack of lies. There are GPs who view Lyme disease with the same disdain as ME/CFS.

    GPs are able to undertake a RCGP e-learning course on Lyme disease. As at February 2017, out of 34,500 GPs only 1,750 had done the course. Caring profession? Bah humbug.

  • But please sort out your gut as anything you take will need to be absorbed there. If you are going to self medicate you will want to buy the lowest therapeutic dose and self sabotage keeps a lot of people ill for years.

  • Jojozo I have been helped tremendously by a nutritionalist. And for a lot less than £2500!!

  • He was ridiculously expensive but I had really extensive tests and that's how I finally got my diagnosis. I won't be doing it again in a hurry though! Where are you based UrsaP? I'd love some recommendations. I saw a couple of brilliant nutritionists years ago but I've moved now so I want to find one in my area who I know will be good. I'm in East Sussex.

  • Yes, I agree, the expense is up front. That was also my experience, sorting out the complete problem right at the start was expensive, but once you have the complete picture then maintenance of the illness is not very expensive and you only need one test a year at most.

  • Hi wow!

    I feel that this T-3 thing is cost related and the NHS has slapped down on this rather than stop using their 'NHS supplies order book' sent out to every hospital big or small? The point being that the suppliers chosen for the NHS catalogue charge the most £ like 3 times as much for an oxygen mask than on you can get from other suppliers like in Spain? This is the hidden, profligacy of the tax payers wastage, supplying contacts for bunce /favours? This was brought up in the house if commons 4 years ago and quietly dropped!

    But that's DOSENT help any if you!

    Lovey, you sound like your GP is unsupportive and disinterested- proberly just as sick of the NHS as you are!

    But prehaps you could either see another GP in the practice or just give them the sack,walk into another practice and say"hello,I would like to sign up to this practice' where they will give you form to fill in and should book you in to see a gp and nurse to have a medical done as a 'new patient'?

    You don't owe them anything. So don't feel guilty about doing that. Your basic records 'summery of health care' will be despatched pretty quickly and the rest of your records will follow in due course.

    It's rediculous that you are being placed into this position of financial hardship by a form of blackmail to get the treatment you should be having as your 'right'?

    But I too have had to seek out a private vascular surgeon?

    Regarding Tesco pastries,you must be in a bad way LOL

    Have you thought that you really need to 'strip out cane sugar'in all such as items like tomato ketchup that's full of it and bin all processed foods, replace with fresh fruit, home made sugar free bread, delfoure fruit spreads( some fruit spreads in small quantities that use fruit sugar are fine, high 90 per cent chocolate,raw cacao and unsweetened carob available on line, low fat Sandwich spread, Marmite or veggie mite, sugar free nut butters in small quantities, omega 3 seeds, pluses vegetables and salads,oily fish, chicken,turkey mince, quorn, porridge, oatcake biscuits, zero fat milk, zero fat plain yogurt, zero fat cottage cheese,fresh and dried herbs, spices? And suppliment of Vit. a,c,d,e ? Plush PORTION SIZES?

    Of course you have!

    I'm not saying it's easy to start with but it becomes easier as your taste buds alter your brain cravings and stabilise your blood sugar levels.

    Your not a monster. Your sick and poorly and need help.


  • Thank you Heather. I feel like a normal human being today but once the PMT kicks in it's a killer, and I never know when it's going to strike! I'm going to take all the advice I've got from here and put it to good use. At least I have a great place to start from now x

  • We are here for you. We stand by you, shoulder to shoulder. We will support and help you stand tall again.

  • I expect others have said many GPs try not to prescribe T3 as price has gone from £11/mthly to £250/mth since only company was sold; Pharma is ripping off NHS. Local LaboratorieS often ignore requests for this test (without saying so) as l believe ?if a need is shown the Medics must prescribe it. Many on here can buy it from France or Greece for about 3xEuros. UK is the most expensive in Europe. GPs and Endos vary considerably tho l have found many bad, and certain problems wont show in the normal Thyroid test unless it is asked for; new Endo l thought ok asked for Cortisol test done by GP laboratories - which came back Low. Then Hospital did a Synacthen test which showed nothing and pleasant Endo said NOTHING wrong, must be M.E! l cdnt speak and was fuming. Others on here have said that test useless

    l saw a brilliant idea on here where someone said she was writing a letter to her GP before an appointment and l thought that great; mine altho generally pleasant is infuriating if l push it and say Dr Mercola's book says UKThyroid test is useless and her response was: you better go there then (US)! Putting it in writing is not so easy for them to dismiss.

    l told great guy on an allied site that l was writing first and wd have to send thru Practice Manager as my branch doesnt give email. So it was suggested l include Practice Manager and say: l do not wish to make a complaint but wd like to have an open meeting with PM and the GP to sort this out (after 40 years). Just about to send it! Oh l was told not tell them what the problem is, just hint and that it cd be one in 500,000.

  • Wow!! what a time you are having, I am fairly new to this forum and don't have much info on all of the workings of the meds but what I can see from your post is someone in trouble. Do yourself a favour calm and collective, go to your GP asap, ask for a blood test and advice just that nothing else. When the tests come back then let him/her advise you what you need and listen as if it was all new to you.

    Meanwhile, take a breath, look in the mirror and make a positive plea to make a stand FOR GOOD HEALTH. You are amazing and you can do it!!! No fad diets, no to gluten free, eat good healthy food sensibly, lots of protein, lots of veg and fruit and take care with carbs and calcium. (ask a friend on slimming world for some tips) Give yourself a break from the stress of all the, can I, cant I, will it work, wont it work... You can make anything work if you try, believe in you. Take Care.

  • Thanks AlliceC. I can't believe how kind everyone on here is being in taking the time to reply to me. I'm looking into some expert help and I'll be on the case with the diet too. My gut needs some love and my bloods definitely need retesting. Wish me luck... x

  • Hi I hope you don't mind me chiming in as I'm new too and not on meds yet but going back to your post, you say you have leaky gut, as so do I but it's nearly healed and it can heal! this is surely your first thing to work on, please google about leaky - keniesilology tests everything like this and you can take heart and believe it because you feel 'weak' or 'strong'. It's straightforward and you get proof , I'd really recommend you see experienced keniesiologist maybe a naturopath who knows the technique, tests food sensitivities vitamins etc, so you believe in what you are giving your body and your energy will take a turn I'm sure with or without meds once your gut heals - a treatment around £60

    ... I have powders prescribed for gut from Nutri, and yes wheat and nightshade family are usually no no, it's not so bad and the weight DOES start to come off when gut heals, the first thing he told me was my middle fat is caused by leaky gut, I've lost 9 pounds slow but sure, so yes it is doable, few complex carbs, protein veggies and low or no sugar, take as much out as poss, onlly to have 2 fruits a day as told by the body shape I'm on also,( as fruits hold a lot of sugar, - its twelve free weeks at leisure centres for swimming, yoga, classes, gym etc,) they teach portion size so it's for life and work out BMI etc, you can do It, Personally wouldn't follow slimming world without fats, your body does need healthy fats, your body has natural colestral, lots of salmon, fish, oily fish , have lean meat, enjoy your food, gluten free bread is ok, and no processed foods I'm told, Try rye, spelt etc, if want, Pulses etc, You will feel so much better and the yoga and mindfulness takes care of the mind, it may well help thyroid and as least you will be treating body as a whole ( to me it all needs addressing not just about the meds, perhaps we are out of kilter anyway because of imbalance ) keniesiology test the meds! I'm going to give it try when I get this far

    I hope I've not offended


  • Hi Jeppy, thanks so much for all of your suggestions. I really appreciate it. I did think about a kinesiologist so I'll look into it. This has been an amazingly helpful thread! x

  • Interesting that you think Slimming World are minus fats... they are not Healthy A and B each day give portions of necessary fats via milk cheese nuts and fibre with wheat based products. I have lost a lot of weight since last year and eat lots of salmon and oily fish and protein rich meats etc. It always is good to have someone watching over you with a diet for advice and support, its a lot better now than in years gone by no red and green days anymore.

  • Sorry my comment was in response to Jeppy's remarks. You do whats best for you. Take care

  • How did you feel utilising a Gluten Free diet? I must admit my skin, brain fog, painful joints and a few more things improved significantly when strictly GL.

    About 2 weeks ago, having been out to lunch, I felt like I had been hit by a sledge hammer, with the brain fog, concentration, painful hands and constipation back with a vengeance. Things were just getting back to a better place when I'm back to square one today. I had a seemingly innocuous ready made main course last night. So annoying, but it looks like it's back top 100% home cooking again in this hacienda!

    All of this is from a standpoint of my usual way of eating being low carb, with no grains, so the only gluten I would be having would be the odd thickener or a little in a main course of a ready meal from time to time.

    Very annoying, but if you felt better when doing GF, it's probably worth getting back to it. The desire to gorge it could well be your body's desire for it's next "hit".

  • Hi jojozo, I think it might be worth it to try two things. Unfiltered vinegar does so many good things for your gut, it blocks starch, it then stabilizes glucose. This takes a lot of stress off the adrenals by doing those. Take two teaspoons with an equal amount of water and gulp it down before each meal. It acts as a probiotic and kills some bad bacteria. If you increase good fats like coconut oil, you won't be drawn to sugar. The vinegar will help break down nutrients as you are probably deficient in lots of them. Now, on top of that, look into systemic enzymes. You can look at reviews on Amazon about Wobenzyme or Serrapeptase. Some reviewers didn't feel immediate results but they work kind of behind the scene. "Enzymes are energized protein molecules necessary for all body functions.

    They catalyze and regulate all the metabolic reactions in the body."

    As we age we deplete these enzymes and unless you eat a lot of raw food, you cannot keep up with your needs. I have found both of these to be very effective.

  • Hi Heloise, this is so, so helpful. Thank you. I've just ordered some of the Serrapeptase and vinegar so fingers crossed. I'll be honest, it's more appealing than raw food, which I tried but didn't get on with...

  • I hope this helps. There are many testimonials on You Tube and one by John Gray I found particularly useful. Keep in mind your gut flora will change in a good way but you may have a little discomfort at times. I use charcoal tablets at times.

  • I've heard those tablets are very good. I am totally prepared to go through a bit of a transition with it all and maybe feel a bit rubbish at times. No change there then 😂

  • Gaye Jackson at living nutrition does online visits. I have been on one of her gluten free retreats.

  • Great, thank you!

  • Be strong gluten no diary suger labels ..make it a habit ?😍🍏🥒🥑 ..thinking of you this lovely morning

  • Hi jojozo,

    Have you considered finding a different GP and NHS Endocrinologist? I went through 3 GPs in my practice before I found one who was sympathetic, and the first Endo I was referred to wouldn't prescribe T3, so I asked on here for T3 prescribing NHS endo in my area and was given a couple of names and I asked to be referred to them specifically. So you could ask on here about Endos and GP's in your area, see if anyone can help.

    As has been mentioned by others, buying T3 online is also an option and you can order private blood tests yourself if you can't get the T3 tests from your GP.

    Personally, I did not do well on T4 alone and I have my life back on T3, if you feel the T3 made a big difference then I would definitely try to get back on it one way or another.

  • Hi kittenmittens, Wow, I can't believe you got T3 on the NHS! I'm so pleased it's worked for you. I'm off to see a private doctor tomorrow so I'll see what he says. But that is a brilliant suggestion, thank you. I'm so bored of feeling terrible! x

  • It took some work and determination, and I think a bit of luck, but I got there in the end. Good luck tomorrow, I hope the Dr is helpful.

  • The doctor was great and I'd highly recommend him. I'm feeling so much better already. It just goes to show the power of these medications and how much we need them. And, sadly, how blind the NHS is to it all. It's an incredible system in so many ways, but I think when it comes to thyroids, unfortunately we have to try and find the right path for ourselves.

  • Hi Jojozo,

    Did the Dr prescribe you T3 then? I'm glad to hear you're feeling better :)

You may also like...