A link to a statement which makes it perfectly clear that many aged over 65 are at the brunt re regulations controlling thyroid hormones given to patientS:
Even worse, the ATA (American Thyroid Association) has stated that the target serum TSH should be 4-6 mIU/L in hypothyroid individuals age 70 or older. That is in spite of the fact that so many of us at ANY age can have raging hypothyroid symptoms even with a TSH in the 2’s.
3) Or take the British Thyroid Association (BTA), which has stated that British thyroid patients shouldn’t be put on any thyroid meds whatsoever until their TSH is over 10, and that seniors should have a TSH around 4-10…in spite of the FACT that no matter what age, we can have raging hypothyroid symptoms even with a TSH in the 2’s–symptoms which UK doctors may blame on something else!! Equally as bad, the UK National Health Service only endorses levothyroxine, and refuses to provide T3 to patients anymore.
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Thanks for this Shaws - it makes my blood boil - when you are younger and ill they are too useless to diagnose you then once you get treatment they under medicate you with just one option and as you age they increase this undermedication it is insanity i can only think drug companies want us as ill as possible to increase their profits. It is disgraceful!
Pure ageism (and sexism by the back door given most of us are women). Can it be challenged legally?
What hard evidence is being used to justify it? None because it is absolute nonsense.
There is actually plenty of hard evidence as to why hypothyroid patients get the poor treatment they do. It's all about conventional medicine and how Big Pharma keeps them doing exactly what they want them to do in order to create new diseases and the medicines by which to treat them.
Even if most are fabrications and based solely on the symptoms -- most are symptoms of hypothyroidism. If they treat hypothyroidism correctly, there would not be a plethora of symptoms to treat (even if not genuinely).
For all of you looking for a definitive answer on just why conventional doctors don't listen to you and choose to heed what Big Pharma tells them to do: please take a look at the generous excerpt from "Selling Sickness" -- subtitled, "How the World's Pharmaceutical Companies Are Turning Us All Into Patients," by Ray Moynihan and Alan Cassels (2005). From the mouth of pharmaceutical companies such as Merck's head honchos -- to your reading eyes. You won't believe how blatant it all is -- but it's all true.
You will no longer wonder why many of the drugs that are meted out left and right are disruptive to thyroid function and why you're not getting what you need when hypothyroidism is apparent. You see, thyroid dysfunction causes over 300 symptoms. Any one of those symptoms created by hypothyroidism (the lack of T3 in the cells) is given a name and then another pill is created and prescribed to treat that new syndrome or disorder.
The biggest revelation to me (I don't know if the authors of the book realize this, and I only read the part at the link) is that hypothyroidism pays for Big Pharma's influence more than any other dysfunction. As most all other syndromes and illnesses are somewhat due to the lack of T3 in all the cells of the body. It must be there for optimal health.
Conventional doctors are brainwashed as they look to Big Pharma to interpret disease and then go about profiting from it by coming up with a treatment for whatever disease (assessed by guidelines as set by Big Pharma) they deem profitable.
The top two indications of hypothyroidism are high cholesterol and high blood pressure. Big Pharma teaches doctors to treat both as a separate disease of hypothyroidism. If the patient were given sufficient thyroid hormone to produce T3 for all their cells, they wouldn't have high blood pressure or high cholesterol.
Mind you, neither are necessarily proven to be a health issue. Whether or not something is a problem depends on where the testing originated and what was to be gained by findings that would merit pharmaceuticals as a symptom reliever for the problem (they never say its a cure). So no one cares about getting hypothyroidism corrected -- as its symptoms fuel the pharmaceutical industry and keep it cash fat for buying more influence to continue their same ruse.
That means keeping thyroid dysfunction ongoing is a sure thing for big billions of profits.
Not at all a coincidence. Statins and beta-blockers are known inhibitors of thyroid function. If you know how the body works, you can easily see the detriment of stopping all cholesterol from being produced when the body cannot live without it. We need cholesterol for the production of hormones, and not just thyroid hormones.
Beta-blockers are given for A-Fib (irregular heartbeat from an unknown cause). The thing is that irregular heartbeats are known to have a cause: hypothyroidism or hyperthyroidism. Somehow, conventional doctors recognize hyper but not hypo, even though it's been proven. And why wouldn't it be? Most all of us have experienced serious palpitations and what is called "A-Fib" when we're late taking our thyroid hormone.
It is advantageous and profitable for Big Pharma when doctors don't have a clue as to what's really going on. They only care about the bonuses they get for writing a myriad of prescriptions that most of their patients don't need at all, and never did. Side-effects are thought of as part of the solution, a necessary risk. Yet no one is getting well under their care.
It's a shame that the vast majority of hypo cases begin with a lack of nutrients which must be in place to facilitate complete thyroid function -- including the conversion of T4 to T3. But doctors let it continue on until the TSH illustrates how sick the patient supposedly is. By that time, the lack of T3 in the cells can cause a number of symptoms seen as 'syndromes' or 'disorders' of another ilk and subsequently treated with pharmaceuticls created for that purpose. None of which gets down the root cause of it all: hypothyroidism not properly treated. . This is by design, no doubt about it. They still then are adamant about prescribing a T4 product that still must be converted before useful and in the meantime does nothing to correct the lack of T3 in the cells. There are lots of brand name medicines that pay handsomely when prescribed -- that includes Levothyroxine.
Governments allow the incentives and rewards given to conventional doctors who loyally prescribe brand name medicines -- whether they are helpful to the patient or not. Their hand goes to the pad and they are on Auto-Pilot. This should never be allowed. Yet it is.
To keep Levothyroxine being used, they are instructed to test TSH. It's all they need, they say: test TSH and give Levothyroxine. Well, we all know that doesn't work most of the time, so why do they continue to do it? So they can have reason to prescribe the brand-name T4 that pays the most when they do it? Perhaps that is why iodine is never tested, even though it is the number one cause of hypothyroidism. It all stinks.
Because patients are therefore kept far less than optimal as TSH is a poor indicator of thyroid function. It certainly cannot attest to what thyroid hormone is in the body other than that which is taken daily by the patient. So it's ridiculous to use TSH as a measure by which to maintain dosing needs.
When TSH is used instead of Free T4 and Free T3 for maintenance dosing and then when "too low" is also used to lower the hormone dose that makes us feel the best -- and when statins are used to lower cholesterol (which we need to produce thyroid hormones and the body cannot live without) or when beta-blockers are used to quiet the palpitations and A-Fib that our hypothyroid body is using to tell us we are in need of thyroid hormone (or have too much) -- well, it's all very self-serving for the pharmaceutical industry. They get richer. We get sicker.
The conflict-of-interest is bold and in our face -- it's one big circus with a huge midway that fleeces us of our money, our peace of mind and our overall health. Yet, most keep returning for more of the same maltreatment. They know not what else to do. But there are options.
Gaining knowledge of what the conventional medicine industry, under the thumb of Big Pharma, does to corrupt doctors and make them Sheeple. They dictate and doctors follow. Conventional doctors are the Sheeple that helps turn all unknowing hypothyroid individuals into Cash Cows for themselves and for Big Pharma.
So no... there is no discrimination of whomever it is conventional doctors are taught to systematically keep sick. Doing so makes the big bucks for Big Pharma, which then buys political power to continue doing it over and over again. The sad this is that everyone who should know about this probably does. But Big Pharma is huge, a monster with more cash than all else and is gobbling up the health of a world of citizens with every pill they make. They make the need for the pill, then they create the pill.
So why do doctors go along with it? Because they've been paid and perk-riddled and found caught-up looking only at the money given them by Big Pharma, rather than recognizing the corruption and havoc wreaked at the expense of all those they've made sick and kept sick for more of their poison pills.
It's up to us to know better. It's up to us to change our health. We do not need to depend on doctors who make us sicker. We can understand what we need for good thyroid health, or we can find a doctor of functional medicine who understand it and can turn one's life around.
The more you know... the more you'll be empowered to do the right thing for yourself. There's no stopping Big Pharma. Our governments are too dependent on the money gained from Big Pharma's evil doings. But we can refuse to use conventional doctors! That's the only way anything will ever change. They've been exposed countless times. No better way to expose them than to find a way to heal our issues by means other than a conventional doctor. That will get the attention of others.
Whatever it takes to make you well is up to you to find. It's out there. And so is the knowledge you can obtain to heal your body and be well. There are many reputable doctors of functional medicine if you look for them. We can change all of this nonsense if we expose it by demanding proper treatment and then going about finding where to get it. Continuing to let conventional doctors yank your chain will never make you well. It will make you sicker and more disgusted. But hypothyroidism left untreated is a disaster you don't want to experience. I've been there because doctors and endocrinologists who treated me were totally inept. Honestly, most have no idea what they're doing.
Please read the first few chapters, it will enlighten you:
Disclaimer: I don't know the authors and am not being compensated in any way by recommending you peruse the book excerpts free of charge. It is only for the content it offers that it was chosen as an example of truth regarding the conventional medicine industry that is the henchman for Big Pharma. If you are not aware, then it should open you eyes to the reality of conventional medicine and provoke you to read more about it via a number of sources.
Very good points and no doubt it is the greed of the chemical industries playing a huge role in the abomination that is endocrinology and poor thyroid treatment.
However there is institutionalised ageism and sexism that blocks the way to better health and we pay (tax/ni) them £100k (+) a year in the uk - Big Pharma top that up I know - and they should be held accountable for their actions.
You're looking at one drop in the bucket and I'm looking at oceans of lies, deceit, and systematic maltreatment that generates revenue for the medical industry and Big Pharma -- all at the expense of people around the world of any age, sex, creed, color, etc.
Thus my statement that the medical industry and Big Pharma (one and the same, mind you) doesn't discriminate in whose health they ruin and even go as far as doing so with their poison pills they label falsely as medicines. And the fact that they couldn't carry this out without assistance from respective governments going along with it all.
My overall point is that conventional healthcare does not care about anyone, as far as improving their health. They care about the money --and making as much as possible by any means necessary -- even if that means creating fake maladies that are simply symptoms of untreated hypothyroidism. That is proven by the fact that conventional medicine perpetuates hypothyroidism and governments allow it to happen.
So their discrimination is against us all.
And it's all about the money.
So why do we put our lives in their care? We can do so no longer if we ever desire to be healthy. Rather, we must seek out real medicine that is done in as natural a way as possible, treating the body as one balanced machine that must have all it needs in order to regain health. That doesn't take medicine, for the most part. It takes vitamins, minerals and hormones.
There are mainy who believe as you do and Dr John Lowe was one of them (since died) but these are a couple of comments he made of 3 excerpts and he only took a TSH to determine patient intially and then concentrated on making then well:. It is a pity Endocrinology doesn't listen to scientists/researchers:-
TSH levels don’t significantly correlate day-to-day[1] or week-to-week.[2] One research group measured the TSH and free T3 and free T4 levels of ten normal young men.[3] When they measured the levels every 30 minutes for 24 hours, they found that the hormone levels were lower during the day and higher at night. During the day, the free T3 was 15% lower, the free T4 was 7% lower, and the TSH was 140% lower. When the researchers measured the hormone levels every five minutes for six to seven hours (7 PM-to-11 PM), the levels varied every thirty minutes. The TSH level varied 13%, the free T3 15%, and the free T4 11%.
Other researchers measured the TSH levels of 31 healthy people. They found that women had significantly higher TSH level than men.[1] On different days, individuals had "a large" variation of TSH levels. The large variations were about equally extreme in both men and women. The researchers concluded, "The present study demonstrated a large variation of TSH levels in various conditions, even in the same individuals, indicating the necessity of strictly controlled conditions in the study of TSH secretion."
Many endocrinologists talk of using the TSH and thyroid hormone levels to "fine tune" hypothyroid patients’ thyroid hormone dosages. Considering how much the hormone levels vary, however, it’s obvious that the concept of fine tuning is mistaken. For the sake of their patients’ health, endocrinologists should promptly abandon the notion. This is unlikely, though, due to financial inducements the endocrinology specialty receives from corporations that profit from doctors endlessly ordering the hormone levels to "fine tune" their patients dosages. Hopefully, though, you can use the scientific evidence to persuade your doctor to use a safer and more effective approach with you. More on this topic
The more we know, the better its realized that conventional medicine (including endocrinologists) follows protocol as established by Big Pharma who controls the entire game. This is especially true with hypothyroidism because of its myriad of symptoms. It is profitable for them to carry out the entire charade. People suffer because of it.
Your post serves to illustrate that once again, none of this deception is secret if we merely look into it.
So glad you posted this, as it's very easy for all to see that TSH is totally unreliable -- that is, if the goal is to help people become euthyroid, then using TSH won't help in that endeavor. Instead, it promotes the opposite: it keeps hypothyroidism from being diagnosed and, when it is established, TSH is used to keep the patient from being treated with adequate thyroid hormone (and the right types) for attaining and maintaining a euthyroid status as indicated by optimal levels of both Free T4 and Free T3.
For millions upon millions, they just want answers to why they feel so badly. They will take this pill or that pill for this syndrome and that disorder when it seems to match their symptoms. They have no idea from where those symptoms are coming and why they are turning into some kind of hypochondriac. Marriages are broken up this way. People lose their jobs and their independence. They become disabled and dependent on government to help them.
Sounds like a pitch for a movie plot -- thus eventually turning massive populations into totally dependent, slaves of government.
What you've posted shows the nonsense with TSH that is keeping us from adequate care and how we've been duped into thinking we must rely on conventional medicine in order to be well. So not true. Statistics show we are sicker than ever, yet we have all the supposed benefits of modern medicine.
Great information, shaws. I'm very familiar with the late Dr. John C. Lowe, and discovered him only when validating my own research. He was a wonderful, caring man who helped so many.
Your post will encourage others to keep filling-in-the-gaps as you do, and take responsibility for getting the right information that will guide them to make the best choices for their overall health -- and then go about doing it!
It's what Thyroid UK is here for, and it's a wonderful thing. I'm grateful to be a part of this community and to help those in need to see the bright light of health in their future. It's not difficult once it is totally understood what holds people back.
Thanks for you all you do, shaws. Much appreciated.
Thanks for your compliment and as you know it's everyone's contributions and personal experiences which open others' eyes to the reason they aren't improving and small steps can lead to good health but it's definitely having an option of other than levo if we are still suffering and being given other medicine for remaining symptoms.
I do actually agree with you about the highly detrimental effect of the Big pharma global money making racket that has nothing to do with promoting good health and everything to do with keeping people ill and dependent on their products. I too believe that functional medicine is the way to go. At present I have totally given up on the NHS and just pop my NDT - & I seem to be doing ok better that I did under conventional medical care.
You have no idea how happy knowing you are making the right decisions for your health. Makes me smile a mile wide. Thank you so much for sharing.
You hit it all nails on the head. I am convinced that first we must heal ourselves in order to help others make that same decision. If their doctor isn't working for them, they must work for themselves and become their greatest advocate for good health.
It is all possible. I'm certainly living proof after being a Cash Cow for a decades upon decades... since birth, actually. I so many different diagnosis and every pill to help each one -- yet got sicker and sicker and sicker.
By the time it was deemed I was severely hyperthyroid with Grave's Disease... well, I knew not much at the time, but my thyroid was removed. Wrong thing to do. But I had no clue. The stark reality was that I was hypothyroid my entire life and all my plethora of maladies (all hypo symptoms) were being treated as single afflictions that Big Pharma's medicines could help, but not cure. As of course, no one is aware of the etiology of any of our problems -- well, not if you overlook their relation to a lack of T3 in the cells of the patient who is suffering. Hypothyroidism is the golden calf for Big Pharma by which to produce fake medicines for fake syndromes that hide their true origin: hypothyroidism -- Low T3 in the cells. We cannot live a healthy life without T3 in our cells and without the vital nutrients and ability for absorption to get it there.
You already know far more about what you need as an individual than 90% of conventional doctors. Or more. Because it's your body. If they don't listen then they don't hear. If they don't hear they simply go by the standard protocols set up for treating hypothyroidism as based on medical panels with doctors who are paid to do so.
I apologize, my passion for truth and justice is from personal tragedy, but also because I feel for anyone who has been so mistreated as to be made ill when it was not necessary.
I love discussing it and it doesn't cause me dismay. Instead, every single time a person tells me they have found a way to make themselves on the road to being whole again... well, it makes my day. Truly.
One at a time, we can change things simply by taking care of ourselves or making sure we how to get that care and then spreading the word of what we did to heal. The first thing most of us do is to turn our backs on those doctors who are paid by Big Pharma to keep us ill.
Not all are corrupted or brainwashed by Big Pharma. Many conventional doctors also see the light. But if you can't find one, or a doctor of functional medicine, it is something we can do ourselves. We just need the knowledge to do so.
I totally understand your leap to that possible conclusion, but I'm really glad you're not fully resigned to that, as you asked a question instead of making a statement.
Here's what I think:
We need nutrients to replenish that which we lack from hypothyroidism that has gone unchecked. For the most part, we cannot get adequate amounts of nutrients from our foods as we used to do (our soils are being depleted of nutrients).
For most, this is a huge issue with trying to maintain adequate nutrient levels that facilitate thyroid function (especially Iron/Ferritin levels and Vitamin D, among many others).
Conventional medicine is not in the nutrient business as they are facilitators for Big Pharma. They write prescriptions that address symptoms (often times symptoms of nutrient deficiencies) without regard of the root causes. They have no clue at all that nutrient levels have optimal levels that assist all thyroid functions.
Conventional medicine, as it is, has a protocol that is contrary to good thyroid health. They say there's no cure for hypothyroidism. So they play with our lives and do so by using outdated methods of assessing thyroid function. Most doctors in conventional medicine are clueless that there is a better way. They are not taught how to heal people. Instead, they are taught that pharmaceuticals can take the place of nutrients by masking symptoms of what really are caused by nutrient deficiencies: including hypothyroidism.
With nutrients kept at optimal levels, we shouldn't need any of their pharmaceuticals. The body begins to suffer when nutrients are low and thyroid hormone (T3) becomes low in the cells of the body.
So no, we are not just feeding another "supplier" when we purchase the right kinds of nutrients -- the ones that will correct our deficiencies and make us susceptible to hypothyroidism.
As that illustrates, it all depends on what is being supplied.
Those good nutrients (as not all nutrients being offered on the store shelves are useful to the body) are what we need to help us regain thyroid function or to optimally replicate it.
But what most don't know is that there's no real regulation of nutrients to the level that we may expect. So it is up to us to be vigilant in many areas; including discovery of what nutrients we lack and then going about obtaining the right types of those nutrients from reputable sources that offer them in their most natural form.
When our body is in harmony with itself (via nutrients and the ability to absorb them [stomach acid is lessened greatly with hypothyroidism or by depletion of nutrients caused by taking various pharmaceuticals] -- then our entire body repays us with good health on every level.
We have learned why conventional medicine doesn't have it right with thyroid hormone replacement care, and now we learn why we need nutrients to help ourselves regain thyroid health. However, once again, it's up to us to find the right nutrients for the job.
If doctors cannot diagnose someone with severe hypothyroidism (who remained undiagnosed) and becoming so unwell the person has no clue what is happening to them. Neither can their family. A person who has paid several private doctors (and also who had an op for something they didn't have) for an answer but instead gets other diagnoses for things they do not have. So we are on a 'not so' merry-go-round.
Who diagnose themself by a passing comment by a non-medical person but a first aider. A lucky chance.
A doctor Skinner (RIP) stated and tried to make the Endocrinology see the errors of their ways of diagnosing, by arranging a Conference to discuss the Parlous Ways of Patients. One by one the whole of the Endocrinology refused. (Dr Skinner knew by first-hand experience as patients were sent to him as they had 'mysterious diseases' and he realised they were actually hypo by their symptoms alone. Not many doctors would have 10,000 testimonials by patients whose lives 'he saved'. Using clinical symptoms of patients as doctors used to before blood tests were introduced.
Our bodies need thyroid hormones to function whether or not hypothyroid and usually our vitamins/minerals are also lowered so we have to treat the 'whole body' and not just the one part.
I absolutely believe what you say about doctors just passing out a pill for every thyroid symptom you have and denying that it has anything to do with your thyroid. Thank goodness for this forum or I would not have any knowledge about what's going on and I would probably be taking pills for aching muscles pills for heart palpitations pills for depression pills, excetera. I'm reading on this far I'm I have added to my NDT, selenium, vitamin A and D, B12, lutein for my eyes, and melatonin to help me be less anxious during the day. I am feeling much better than I was. My TSH was .22, low on the scale, and I have been told to reduce the NDT by 48.75 a week. Have not got another blood test yet coming soon. If I had not read your blogs here I would be taking 10 pills a day probably. I have just changed from a GP who informed me she was done with me, now I'm going to an endo nurse practitioner. In one visit she already is trying to blame my symptoms on something else! I just don't get it, where do you get good treatment? Thank you all for your informative replies and support.
Self reliance with help and advice here has got me back on my feet - you must keep educating yourself and avoid any medical person who spouts nonsense. As for your GP what a dereliction if duty how does she sleep in her bad at night raking in her £100k ayear paid fue by the public purse and ultimately her patients - odd they think it fine to bite the hand that feeds them. There are good ones as you say, it is finding them that is difficult
I always thought doctors had a vocation, i.e. to heal the sick and do their utmost to do so. Unfortunately, knowledge and symptoms have got lost by the emphasis on a blood test alone. Big Pharma make money out of tests as well as the 'extra prescriptions and if we improve we don't do much for their profits.
The problem is that they don't listen - don't acknowledge symptoms - they know none. The blood tests were also invented for levothyroxine alone, so if we take T4/T3, NdT or T3 only they cannot comprehend the tests. This is what one of our Advisers stated (he died through an accident).
Totally agree- it is thyroid madness and personally I don't think anyone seems to really know what they're doing. Not in my case anyway. I seem to know more about the thyroid than any doctor I've seen from my own in depth research. Getting the proper tests is a battle- you're constantly told you don't need the tests and just take levothyroxine. BUT so many comments on here from people saying they're still suffering with meds and my mum has been on levo for 15 years and still has all the symptoms- more in fact than I Do!
Why do the doctors in the UK refuse T3?
It's insane. I'm still going medication free because I don't believe in the meds even working based on this.
It is a tornado and doctors don't seem to know or want to listen, and the only advice or help you're offered is medication that's just going to cause other problems and not even solve the ones you have in some cases!
Thank you- I definitely agree with temperature being the way doctors should test this.
And totally agree with sleep deprivation affecting TSH levels.
Doctors should know this. It makes me very I'm easy to think how I'll informed most of our doctors are- the ones I've seen anyway. I seem to know more than they do.
I believe that it is the increase of load in GP practices, gender bias, and the increasing hold of Medically Unexplained Symptoms or somatoform disorder.
E.g. If I spend a brief amount of time 'listening' to patient, no physical examination, do a basic set of tests, interpret them in a way that suits the general population, tell them they are fine, reassure for health anxiety, etc then I have done my best with my resources. My heart sinks every time they come back, then patient cries and I continue to reasssure them that they are fine, suspect mental illness and medicate or refer. Delay or refuse further monitoring, let everyone else in practice know not to add to their health anxiety.
Years go by with us beginning to believe they are right. When I found my diary for my first two years of total bedrest I could tell how ill I was in that I believed everything they said! Add to the above that we are all supposed to be lively, cheerful and doing our best, and you have a recipe for disaster.
It featured women waiting up to 10 yrs to diagnose endometrosis , so we are not alone !!
It took 13 years for me, and I'm sure there are women who are never diagnosed or they wait for a diagnosis for 15 or 20 years, or possibly even longer.
Many women are probably not diagnosed at all until they give up hope of getting helped or believed and have a hysterectomy.
It really is, Gcart. And you are so close to the truth that I could swear I saw it fluttering on what you wrote.
Endometriosis is a symptom of and caused by low T3 in the cells. Almost all maladies are associated with and symptomatic of Low T3. Hypothyroidism. They don't want to make that association clinical or they'd have to treat it as such, rather than do hysterectomies to "solve" the problem. I'm living proof that a hysterectomy doesn't solve the chronic pelvic pain at all. That's because it is caused by low T3 (hypothyroidism) and called endometriosis. Not that it isn't, but that its origin is Low T3.
When I finally got my T3 back to optimal, the pelvic pain I'd experienced since puberty was gone. Gone. So was the debilitating pain in most of my body that I had endured for sixty years.
Hypothyroidism also exacerbates pain. It's a perfect dysfunction to hide and call it's symptoms some other syndrome or malady that needs a different care. Then they don't have to recognize the hypothyroidism which is causing it.
"The main clinical symptoms of endometriosis are chronic pelvic pain, dyspareunia, and infertility. The exact cause of endometriosis is not known. ... These findings suggest that endometriosis and autoimmune thyroid diseases might be associated.Mar 11, 2016
Graves Disease Is Associated With Endometriosis - NCBI - NIH
I had full-blown Grave's Disease for ten years or more (the antibodies remain so technically it's still there). But before that, I was hypothyroid all my life and was never diagnosed until 'the treatment' for Grave's rendered me hypo again: thyroid removal. The anti-thyroid drugs were laughed at by my body. But I believe that was supposed to happen as my body was replenishing T3 throughout my cells. But doctors don't know that.
Blood tests show doctors had no clue to connect any of my maladies to hypothyroidism -- though I had so many common symptoms that were plain to see. My hysterectomy was when I was only 20 years of age. What a shame. But the pain was unbearable. It just wasn't caused by 'female problems.' It was the lack of T3 in my cells.
So why don't doctors first check Free T3 and Free T4 levels before looking at any other possibility when investigating dysfunction of any kind?
Because they'd have to admit that something is wrong as we are all systematically becoming hypothyroid. That's why.
Grave's is auto-immune hyperthyroidism but is caused by a dysfunction of the thyroid, just as hypothyroidism is. This fact doesn't preclude the distinct possibility that endometriosis is found more often in women with hypothyroidism than hyperthyroidism. But how will we ever know for sure? As it is now, clinical hypothyroidism is determined by an unreliable method: reading TSH levels and usually stopping at that.
Thus, women who are told they have endometriosis and need further treatment and possible hysterectomy, should get their Free T3 and Free T4 levels checked. If your doctor won't try checking them, get the test with an online prescription and have the results sent to you. The good people here at Thyroid UK can help you with the results. If you already know this, hopefully it will be of help to someone else.
All those illnesses and surgical operations that happened to me were due to Low T3 and not any of conventional medicine's fake maladies. Well, they were one and the same but thus could only be corrected by the addition of T3 thyroid hormone and not fake medicines. A very hard lesson learned.
So that's why I researched and learned how to correct the hypothyroidism that was my Achille's heel throughout my body. Conventional doctors were literally killing me. So were endocrinologists. This isn't merely my opinion, but documented facts. They are trained to miss the obvious and are too brainwashed to realize they're doing it.
At least the last endo I went to said my TSH should be 1.0 and didn't blink was it was shown to be completely suppressed. But she made the mistake of not listening to me and put me on T4 with T3. I could not convert the T4 and became sicker. She never checked nutrients even thought I asked her to do so. She said to ask my GP. I did. He said to ask her.
Ridiculous. In the meantime, there was a patient of theirs getting sicker and sicker while they argued over who was responsible for checking nutrients. The endocrinologist had no clue of the relation of nutrients being vital to thyroid function and subsequent conversion from T4 to T3. I can understand the GP not having a clue. So that whole ordeal did it for me. I got what I needed to be healthy without their sabotage and fired both of them. Useless.
The maladies were real, but the cause and treatment by which conventional medicine addressed it all to was totally fake. There was no need for me to lose organs from my body. Organs that promote proper thyroid function: like the gallbladder and salivary glands. Keep them when the doctor says you have an issue and find a functional medicine doctor who knows how to restore your health.
Sorry, I'm not assuming that you personally don't know what I know. It's just that others reading this may benefit if they don't know. I suppose I talk the world at times. LOL Not personal.
All I needed was ample T3 in all my cells. I felt my best when I had Grave's, which spews T3 into your body as if on overload. Surely it was my body trying to correct a more serious issue: low T3 which can cause death. I've never heard of anyone dying of too much T3, though conventional doctors are brainwashed into thinking that way.
I have only just read your thread on this post.. I am now groaning in further despair. My words to you may seem totally pitiful and inept really with all you have had to go through....but without trying to sound too melodramatic I am so so sorry that you, like many of us on here have had to suffer, relentlessly and totally unnecessary because of the very sub standard medical ability of the medical profession. Hope you have had the strength to write this down on paper to your local MP and the NHS England? It would be a fantastic case study for them to consider....and extremely 'timely' given the campaign and CCG Guidelines currently afoot!
Thank you so much for your words of kindness and compassion, sweet shond. Your words are beautiful and sincere. Thank you again.
For me, no matter what any of us have been through, it's all the same. There are simply varying degrees of it. But I do appreciate your comment very much. Perhaps my story just shows others what can happen if they don't get the proper care.
For that, we must look in the proper places. Functional medicine is a start. They are not in the pockets of Big Pharma. They treat with as many natural nutrients as possible, as that is usually where dysfunction gets a foothold on our ailing health. They correct the whole body. Not just put a band-aid on symptoms with medicines that harm thyroid function.
Medicines are among the leading causes of death in developed countries. The proof is there that something is grossly wrong. Those in the medical profession who don't see it -- don't want to see it. Meaning, it's hard to change that which "earns" the most money on the planet -- and buys the power to keep it that way.
I live in the U.S. where the problems here are very much the same as in the U.K. You see, where there is Big Pharma -- there is much unnecessary sickness and premature death.
Big Pharma is protected by governments and their respective laws designed to do as such. Everyone is getting paid and don't notice the increasing sickness and deaths of people who should have never been sick in the first place.
Hypothyroidism is big money, by any and all names they apply to it -- with accompanying 'medicines' that make it worse. They convince us we have a plethora of other maladies, but it is hypothyroidism that is the root cause.
Conventional healthcare was not created to help us. They make us sick so they can pretend to make us well with their costly drugs. What we all need to realize is that we don't need their drugs when good nutrition and ample amounts of T3 in our cells will cure us of all maladies that Low T3 causes.
There are those who have tried for decades upon decades to get others to see what is happening.
There are whistle-blowers who made big money ghostwriting for medications being developed by Big Pharma for the treatment of this or that new syndrome or ADD nonsense. These writers knew nothing of the drugs they wrote about. But they were paid handsomely for their time. Some of them got a conscience and told what happened.
The words of the ghostwriters are very persuasive for the need of the particular drug in question -- and especially so when the name of an established doctor in that field of medicine is thought to be endorsing the drug. His name is on the article as if he wrote it -- but he did not. He just signed it. It happens all the time. Then the panels who approve the drugs are also on the payroll. Perhaps one or two are not. But their dissension of two votes nay can't stop the majority on the panel from outvoting them and approving the drug.
Imagine doctors trying to be rid of Big Pharma. It's like cutting off their nose to spite their face. They have become dependent on Big Pharma, just as so many hypothyroidism sufferers have become dependent on going to conventional doctors and not seeing what they don't do. They do not cure anything. They do not get to the root cause of an issue. And we, in turn, start believing that perhaps we are simply a difficult case and they're doing all they can. Not even close. Oh, we poor darlings who have endured such. We are all suffering, for sure.
What else can we think when we don't know better? But when we do know better -- we need to help ourselves first and foremost. Get healthy and then use your health to create the dissolution of the marriage between the medical industry and Big Pharma.
When the need for Big Pharma stops -- so will Big Pharma.
That panel of which you referred? Who is behind the curtain writing those Guidelines? There are big players usually on those panels.
If I'm wrong, I'd love to know it. Sincerely and truly, I would. I'd love to have a little faith that some entity out there has a clear mind when it comes to refraining from wanting to kowtow to the almighty power that is Big Pharma.
Anyway, thanks again for your wonderful comments. Someone may read all this and that light bulb goes off again... I'd love it.
We keep it churning towards truth. It's about all we can do. Our good health without conventional medicine will be the proof that others need to decide there must be something to it.
I had very severe endometriosis as well. It took years to diagnose, no serious attempt was made to treat it, and I was never given pain relief. All my begging for help was put down to attention-seeking and mental health problems. Hysterectomy didn't help me either - the pain just continued.
I've often thought there must be a connection between my hypothyroidism and my endometriosis. With hindsight I believe I had hypothyroidism from childhood, but wasn't given my first prescription for Levo until I was in my 50s. I now test and treat myself.
You are so right on every level. Most of us have been hypothyroid for a very long time. Failing to correct the lack of T3 first and foremost will keep us on a downhill spiral for continued symptoms and maladies because of the T3 deficiency.
This is why T4-only thyroid hormone like Levothyroxine does not work for those of us who have been hypo for years upon years and decades upon decades.
Restore the T3 in the cells and we can restore our health.
Instead, conventional doctors don't check Free T3 and Free T4 at all, for the most part. Those simple testings can tell so much about what is going on in our body.
As it is corrected, all nutrient corrects should be occurring simultaneously. Attention to this simple matter can restore thyroid function for most, as long as they also correct any absorption issues if necessary.
Medicines from Big Pharma cause millions upon millions to become hypothyroid as the body is subjected to chemicals that retard thyroid function. Not a coincidence by any stretch of the imagination.
It is wonderful to be here where there are others who understand the problems we face. So we make it a priority to learn what we can on how to heal ourselves. It's not conventional medicine that will help us. For every step forward, there are two subliminal steps backward. They poison us and most doctors are completely unaware they are being used just as their patients are... by a money-making machine that will ruin our health in order to keep us sick and needing their medications.
Thank you so much for sharing, Humanbean. Love hearing from those who have proven conventional medicine wrong.
Human bean......I just checked your post again, because when I first read it I thought it said 'was hypo". you did actually write "hypothyroidism" and not 'endometriotis" - yep...definitely brain fog moment!
I had blood test 24yrs ago put on lethal small dose I'm now takein g 200micro a day my Dr has never even said what levels i have at any time. I have read a lot today about this and feel a bit silly not to know anything about levels just told to get another blood test and up goes the meds again. I'm wondering if I should come of them all together and see if I really need them or just change my diet.
Susan, the best thing you can do is to post your labs here among those of us who know how to read them. If you are taking 200 mcg. T4 (Thyroxine), I assure you that is probably a part of your problem with not feeling well. Your doctor is a bubblehead, lost in the bubble of doing the same thing over and over again and expecting a different result. Your health fails while he continues on that course. He thinks he is following protocol. By insisting on increasing your Thyroxine (T4), as if that will solve your low T3 issues, he's following a recipe of disaster that keeps you sicker and he doesn't even know it. My doctors did the same thing. They are all taught the same in conventional medicine. It simply doesn't work. Not only for all, but not even for most. At some point the effectiveness of T4 will fail to get the job done, if it ever does.
You see, Thyroxine (T4) is dependent upon nutrients being available to facilitate its conversion into the active thyroid hormone Triiodothyronine (T3) -- which is what we need in our cells to ensure all systems function properly. Without adequate levels of T3, we suffer. Eventually we suffer from head to toe as T3 is depleted in our tissues and cells.
The thing is that you need a doctor outside of conventional medicine, as they all follow the same errant protocol: give T4 and wait six weeks. There are a few exceptions, but they put their career on the line when they deviate from standard protocol. That's why most won't even consider it.
Month after month, year after year they keep increasing T4 to no avail as their patient continues to get sicker. The fact is that they aren't considering what the lack of T3 in the cells has done during the time thyroid hormone was insufficient (due to inadequate conversion). They rely on Thyroid Stimulating Hormone (TSH) which merely tells them that you have taken T4 and its ample in your blood. Why can't they figure that out?
Because it's safer to follow protocol. They don't have the time to give attention to patients on a true "personal" basis. If they treat everyone the same, they don't open themselves up to litigation when something goes wrong.
So they give you more T4 and send you on your way.
How can possibly get better when they have you relying on T4 to convert into T3 -- and the fact is that you cannot convert it because low nutritional levels block conversion?
It's called Reverse T3.
Reverse T3 is what happens when a person can't convert T4 in an optimal manner into the vital T3 their cells need for overall good health. Most times, it is a nutrient deficiency (or more than one) caused by the lack of stomach acid that hypothyroidism brings about as bodily functions slow down. When T4 is not converted in an adequate manner, it instead turns into Reverse T3. Reverse T3 blocks T3 from getting into the cells of your body and hypothyroid symptoms worsen even though your T4 is constantly being increased.
The vast majority of conventional doctors know little of Reverse T3, if anything at all. The ratio of Free T3 to Reverse T3 should be around 2:1. Most people are 1:1 and their doctors have no clue and simply up the dosage of the very thing that is causing the blockage that keeps T3 from getting into their cells.
Ask your doctor to check your Free T3 level along with Reverse T3. Challenge him to do it. Then use the 2:1 ratio of Free T3 to Reverse T3. I will bet you find your ratio closer (or worse than) a ratio of 1:1. (The easiest way to compare is to remove the decimal point of the Free T3 [e.g. Free T3 2.6 and Reverse T3 of 26 = 1:1].
Conversion "disorders" do occur when nutritional stores are inadequate to facilitate thyroid hormone conversion of T4 into T3. Most doctors think such things only happen due to a rare genetic issue that can cause blockage of thyroid conversion. Again, they are wrong in that regard and have been proven wrong. That's why I say challenge your doctor. If he's a good doctor at all, he'll want a way to help you. If not, then help yourself by kicking him or her to the curb and find a doctor who practices with 21st century knowledge.
Fortunately, more youthful physicians are beginning to realize they are merely pawns of Big Pharma. This is why more and more are becoming doctors of functional, whole body, medicine (which doesn't rely on pharmaceuticals for health, but nutrients and hormones instead). They are actually trained in how the body works and what it needs to regain and or maintain health.
My opinion is based on over five decades of personally dealing with the total ignorance of the GP to Big Pharma relationship. Just two years of discovering the truths helped me to reverse what had kept me ill all my life up to that point. For me, it was all about low nutrient absorption and depleted nutrient levels. Don't go by the "reference range" mentality but by optimal levels of nutrients instead. Tending to those things and correcting the Reverse T3 issues caused by excess T4 that my body couldn't convert -- well, it completely changed my life.
You also can change your health. You don't have to be hypothyroid forever and deal with the uncertainty of your health. You can be healthy. I promise you.
Yes, there will be dietary changes to get there, as what is sold to us is not always what we think it is. We like to think if we can buy it from the store, it can't be harmful to us except in excess. I learned this lesson the hard way. I was wrong. Some things are completely counterproductive to thyroid health. I learned about them and refrain from consuming them. But it's worth it; as life is wonderful as I have my health back! No thanks to conventional medicine at all.
Instead, I thank myself for finally "getting it," and truly opening my mind to the sabotage that goes on in this world that can keep us sick with hypothyroidism. It's all in the name of capitalism so it's not illegal, but we have to be responsible for knowing what's out that that hurts our thyroid (and thus overall) health. There are many pitfalls.
But when you learn how you got to be in the condition you are today, you also can learn how to reverse it. Self-preservation is a powerful motivator. You have a life to live! Why not live it to the fullest as much as you possibly can? That, my sweet Susan, is a responsibility we have and we should tackle it as our highest priority. If I can do it, anyone can.
Apologies for length. I hope length is not a deterrent to gaining some of the knowledge necessary to reverse the bane of hypothyroidism.
Susan, healing hugs to you -- and to everyone here in need of them.
Faithless Thank you I would love to show my GO what your saying but I'm pretty sure if be chosen the way out and told if I'm not happy with his way of doctoring to find a new surgery. I have picked up a little from your answer so thankyou . I'll try my laptop and see if I can find a book to help with diet and vitimins.
You're on the right track, but not just any book, of course. You need to read those written by others who understand how the body works. Those who do, know that when we become hypothyroid, there's a reason for it. When there a cause... there is a remedy back to health.
The article at the link below may be of help to you with regard to understanding the types of books that may be most helpful to you:
In closing, Shaws makes a good point. You may want to create a new post so that others here can also be of help to you. My post is months old and others may have never seen it and therefore could miss the opportunity to be of help to you. Good and knowledgeable people here!
Thank you csmithladd i will look up as you have advised in finding it all a bit much to take in all the good advise on reading some of the blogs but I'm sure I'll get there. I feel a little silly for not understanding any of this before but my eyes are open a long with my mind. Cheers.
Susan, you've put your post within one which is three months old.
Please begin a new Post and more members will respond.
First, we have to read and learn in order to get ourselves well as doctors are so poorly trained.
I would suggest you get a brand new blood test which should always be at the very earliest possible, fasting (you can drink water) and allow 24 hours gap between last dose of levo and test and take afterwards.
Ask GP to also test B12, Vit D, iron, ferritin and folate. Deficiencies in any of these can also cause clinical symptoms.
Always get a print-out of your results with the ranges and post if you have a query and members will respond.
Doctors usually only look at the TSH result and if it is somewhere in the range (these are the figures in brackets) they think we're on sufficient dose and any clinical symptoms which we have doctors will assume they are due to something else and will give us a prescription but not for an increase in hormones.
For many people taking levothyroxine (generic or otherwise) works for them. Most on this forum do not improve or doctors keep their dose too low to be effective, i.e. it doesn't provide sufficient T3 from their dose of levothyroxine.
You've got to be careful if you are hypo and not taking replacement hormones - it is so gradual that you can cause more problems for yourself as our heart and brain need the most T3. Some people can go into a myxedema coma.
Dr Lowe was clued up. I have some chapters from his book his wife kindly emailed me and it was before I started NDT. It was a light bulb moment reading it all. If only all doctors could be like him.
Unfortunately non-sense seems to rule the roost re dysfunctions of the thyroid gland instead of a more holistic role, i.e. clinical symptoms and a trial of levothyroxine.
Dr Skinner was another who stated Endocrinology in the UK put many patients in a Parlous Situation which we know is very true. We don't need to mention suicide as the thought crosses many unwell people who are prescribed anti-depressants without having Free T4 and Free T3 checked - the reliance being put on an horrendously high TSH along with T4 only before being diagnosed.
You do know that hypo/hyper thyroidism and mental health critics have to first rule out thyroidism befor diagnosing their mental health! Hormones change our mental status. Fact!
My sentiments exactly shaws and no doubt put about by the drug companies! I once mentioned to my GP that I have very little hair on my legs. She said she visits lots of old ladies in nursing homes and they have very little hair on their shins so it's an age thing to which I dryly replied or they all have an underactive thyroid and left her to think about it. Well the hairs are creeping back! May be I'm getting younger and if I have managed to do that then the magic is caused by going on NDT! I've never wanted to wish an illness on anyone but think the time is ready for hypothyroidism to hit health professionals or would that make the storage of doctors be more critical as they can't heal themselves! Ok I'm being a bir flippant but I don't want to raise my BP etc as the inner me is fuming on how badly many are treated through ignorance.
I think the 'undiagnosed' will hold an inner anger forever that such a common autoimmune disease is passed by due the ignorance of clinical symptoms and people remaining undiagnosed. Prescribed levothyroxine on too low a dose or it doesn't suit some people. They have now withdrawn NDT and T3 so the NHS expenses will rise by seeing more patients, giving them levo if diagnosed plus all the other 'extras' for the remaining clinical symptoms or deemed hypochondriac as 'your blood levels are fine'.
Dear silverfox ....reading the thread from Shaws startling announcement this morning threw me into a despair...until I reached your post which brought a wry smile to my lips.... probably because I can relate fully to what you just said.... oh...and you made me smile which.....stopped the inner me from boiling over with fury! thank you! Just off to pop another NDT - which has been a life saver!!
Hi when you want to add a member into a reply/response put an @ at the front of the name and as you type, below you will see a list of similar suggestions and pick the one you want and name will turn blue as above otherwise the person isn't alerted.
I would like any doctor aspiring to become an endocrinologist to be given a course of Carbimazole until their TSH reading is 10 or above so they can have personal experience of just how bloody shitty that feels! And I am not being flippant, I'm being deadly serious, because that's what their ignorance is doing to us!
I assume the little old ladies wouldn't be getting a doctor visit if they were healthy. I wish that GPs would realise that, apart from accidents, they don't see healthy people, so how do they know what one looks and sounds like.
They were healthy enough to actually pass through the barricades and not only get an appointment but to attend so can't be that bad... Most doctors I think believe illness to be rarer than it is. They see a fair number each day but that represents just the tip of the patient iceberg so they should expect to be making diagnoses rather than reassuring that all is well based on little actual evidence. Bias in not expecting to find positives or significant symptoms and signs, must have an effect. And obviously they see more women than men with gender bias a part too.
shaws I have stopped putting on my war paint since one idiot told me that I looked to good to be sick. Had he looked past my face, he would have noticed that I was weariing slippers because I couldn't get shoes on my fluid filled feet and my neck scarf was not intended to dazzle him with colour, no, it was to hide my embarrassment due to goitre. I didn't know whether he was trying to flatter or ridicule me, I suspect the latter.
At this dark time in my life, I retreated to the safety of my cocoon. No doubt, many others have hidden themselves away therefore the true extent of this awful disease might never really be known.
It is now time to put your best foot forward despite clinical symptoms and ignore unsympathetic doctors who cannot see beyond the TSH.
Get a new blood test, the earliest possible, fasting (you can drink water) and allow a gap of 24 hours between your last dose and the test and take afterwards. Also ask GP to test B12, Vit D, iron, ferritin and folate. Deficiencies in these can also cause symptoms. Don't let them win.
Thank you to you and to all those who are leading the way with this issue. I am truly grateful.
I am urging/imploring all of you out there who are reading/contributing to this forum and who suffer with this dreadful condition........ to take action...whether it be by letter, social media campaigns, visit to your local MP....anything at all! Please help bring attention to this situation.
All of those suffering with thyroid/auto immune conditions simply MUST NOT SIT ON THE FENCE with this one. It is absolutely vital that our voice is heard. To those of you who haven't yet signed the ITT campaign, or completed the NHS survey, or written to their local MP, PLEASE PLEASE make yourself do something!
If people can't be bothered to help fight this cause...then they cannot blame the system in later years when they are suffering relentlessly and unnecessarily. I am sorry if this sounds harsh, but the reality of what is happening is actually very very frightening.
Sometimes it is not a case of 'not being bothered...' A lot of the time it is a case of people not being able to be bothered... Go and see your MP when you're already feeling very vulnerable and he'll talk you down quoting the 'experts' at BTA et al and you leave his office in tears, the only thing having been achieved being your own distress levels sent through the roof! Letters, especially standard template ones (which, let's face it will be the ones most people will send because they haven't got the ability to come up with their own and it's easier) will just get stashed away in File 13 (the bin). The NHS survey is not a task to tackle if you're not feeling anything but completely on top of your game...
Some of us do feel well enough to tackle all of the above (I have done all bar visit my MP who, because of his stance on fox-hunting which I've had a go at him for on more than one occasion, would probably not even give me a fair hearing...) but the more you get knocked back the less inclination you have to continue...
I am a regular contributor to the Facebook campaign and will continue to be so, but to expect every hypothyroid sufferer to do the same when they're trying to deal with brain-fog and all the rest of the debilitation this condition inflicts is not only unrealistic but a little harsh too.
I know what I felt like when I was on T4-monotherapy before getting my T3 and I would not even have considered answering your post, let alone argue with it... I will fight tooth and nail to keep my T3, but if that fails I will source it elsewhere - what I will not do is give it up!
Most of the Lords(there are a lot!) have also revieved letters.
Nationals have been sent press releases. There's hope of a story soon.
We must keep on to Jeremy Hunt to implement the Medical Supplies (costs) Act which was passed in April but still not been implemented. As from this week there are no more excuses as a new committee has been formed.
We must stand up and sign the petition, about stopping prescriptions for T3 and NDT, write to our MP's, even though we feel. exhausted and disillusioned. for the next generation if you have give up hope for yourself!
@Katepots do you have the campaign on anything other than Facebook I was mysteriously shut down from that wretched site so would not ever use it again on principle
I read that and it's shocking. They're trying to make some mileage out of the observation that older people tend to have slightly higher TSH values. Fine, but if they are ill with hypo symptoms at the same time, then they clearly need hormone replacement, not a pat on the head with 'it's your age and normal'.
This saddens me, and most often I don't feel well enough to fight or study atrophy thyroid issues I have with nhs.
I just don't understand why they refuse to do certain hormone tests, why they can't also look at the 'proven' symptoms and treat or at least try , instead of being obeying from above 'little soldiers'.
Once again we see the "shoehorn" mentality at work! People are categorised as a group according to biochemistry and not as individuals who have very different outcomes from the same biochemistry. This has all come about insidiously from the time of automated testing machinery and printouts that ignore individuality and simply highlight in range or out of range which is conveyed to the GP as a command. That things happen not entirely to ones benefit when one becomes old in all sorts of ways (personal experience) is obvious, but we oldies should at least be given the same individual attention as anyone else and not simply pushed into an age-related category based on numbers.
Definitely don't think like that - it is those who perpetrate these guidelines who should be committed because they make no sense whatsoever. If it doesn't make sense then it is 'nonsense'.
Thank you, Shaws, for highlighting a deplorable situation. Have you noticed a pattern of deplorable situations? I have wherever money and power are involved. Man's inhumanity to man continues. But there is usually a way out and all we have to do is find it.
This has reminded me of something Prof Reg Hall of Newcastle and his colleagues found out many (40+) years ago in the first Whickham survey. One of the findings was that there was quite a lot of old people in Old People's Homes who were unwell, confused and generally in a bad way. On testing these were found to have somewhat elevated TSH. They were given T4 and lo and behold some of them were so perked up that they actually left the Home to become independent again. Many others significantly improved mentally and physically. So old evidence has shown that at least in some old people with elevated TSH, T4 therapy helps.
I think the problem is that the 'modern' method for diagnosing and prescribing is ineffective for many patients. So why is old evidence ignored in favour of 'new' which doesn't help everyone.
Why cannot we source whatever thyroid hormone we wish over the counter as long as we have a Certificate which shows we are hypothyroid? that would solve a lot of the anger/frustration patients have.
Shaws - that is a great idea..I really like that one.
What on earth makes them think that I, at age 70, should have a TSH of 4-10?
In the REAL world my TSH level means absolutely nothing whatsoever. Whilst taking levo on its own it mattered not one jot what dose I took, 50mgs or 300mgs, I felt rotten.
The only solution was to take NDT which has given me some degree of health, much more preferable to not being able to do anything. The same rule applies to probably everybody else who has had their thyroid gland removed for whatever reason.
WHOEVER THOUGHT THIS UP SHOULD BE CONSIGNED TO THE INSANE ASYLUM, HAVE A TOTAL THYROIDECTOMY AND BE GIVEN JUST ENOUGH LEVO TO KEEP THEM ALIVE AND HENCE SUFFER LIKE I DID FOR THE REST OF THEIR LIVES!!!!!!
What we need is the freedom to source whatever thyroid hormones we believe will make us better. We could be provided with a permanent prescription/card which states we are hypothyroid and we can ask pharmacist to order.
It took me quite a while to find out what suited my body best.
Diabetic patients, I believe, are able to treat themselves. Why cannot we as we have a life-long condition which is fatal if neglected and which can lead to other serious illnesses if undiagnosed/undertreated.
I like this idea, we could report for testing when we felt a bit off or it was due, and could have a relationship with a pharmacist that provided what we needed. What a revolution that would be! Add the B12 injection kit and good sublinguals, LDN trials and the ME drugs and I would be 10 times better already. As you say diabetics are allowed and expected to take control. We could have newly diagnosed day clinics to teach us everything we need to know to get started as they do for diabetes. And I wouldn't have to fear going into hospital or a home for the dreaded monotherapy of T4 badly administered.
It must be a huge fear of many to think that they will end up in a home due to being badly treated/diagnosed and feeling unwell for years or even developing other diseases due to neglect. If they are well on NDT or T3/T4 will it be removed if having to go into a hospital for something unconnected? I definitely wont hand mine in to anyone over my 'dead' body.
We are only taking replacement hormones that are deficient in our body. You'd think we were asking for for a full body make-over, i.e. starting with face lift etc Onwards and upwards :),
shaws , it can also lead to madness which is where the doctors (not all of them) would like us to be. That way they can discount all of our campaigns and arguments as fuelled with hysteria and pay no attention at all. All these mad people swapping stories of more than 300 symptom experiences advocating self medication...
We need hard evidence and sound arguments to move our campaign forward, to influence the real decision makers and promote realistic change.
They are ignorant of any clinical symptoms and don't recognise any clinical symptoms or the pleas of their patients who are desperate for the Endo to solve their disabling symptoms .
Maybe we should organise a 'Conference' for all Endos and a question and answer session but first of all setting out a set of questions for them to answer. Then a Member can hold centre court while we, the patients, can then put forth our questions and first of all asking why we are restricted to levothyroxine and removing alternatives from the NHS on which many have resolved their symptoms and given them back their health or adding T3 or T3 only. Not caring of their patients' distress at the removal and desperately trying to source their own. This isn't right at all but has to be done otherwise their lives are ruined.
Possibly, a few Endocrinologists might agree to answer or debate some preselected questions however, it would be professional suicide in my opinion to open the debate up to those "mad" patients with thyroid disease
Of course we need a conference but we need powerful speakers, well known people with thyroid disease or better still, doctors with thyroid disease to create an awareness of the devastating effects.
Our voices need to be heard, we need researchers to take an interest in our plight and conduct both national abd international studies which will put us on the map. We need to engage with people accross the globe, in order to learn how others cope (or not cope) with this necrotising illness and speak with one voice. We need accurate figures, powerful statistics difficult to refute, statistical power which might bolster our arguments and bring about much needed change.
To do so, each and everyone of us should consider doing "our bit", anything to promote our cause, actively engage in research, writing to MP's as someone else said, anthything to create awareness.
However, we need to realise that real progress might not happen in our lifetime.
@mauschen this quote from Conan Doyle (he was a GP) was posted on Dr Kendrick latest instalment about causes of heart disease in the comments:
” Science is the consensus of opinion of scientific men ( sic) and history has shown that it is slow to accept a truth. Science sneered at Newton for 20 years. Science proved mathematically that an iron ship could not swim and science declared that a steamship could not cross the Atlantic.:”
I hope change does occur before I cock up my toes!
Science is often not correct nevertheless it is our only vessel. Nowadays, science can be rigorously challenged, picked apart at the seams and hypothesis dicounted.
However, we need to start somewhere to be taken seriously.
Age is a number NOT a condition! It's worrying that I've read that when dementia was looked at I think recently all in the test group were low in T3. I wish I was organised and kept such things as references etc but there is another incident I've quoted before from the late 1900's. A medic I think he was took an interest in a local asylum and asked if he could test the patients. He suspected that they had a thyroid imbalance and lunatics. They were all female and were tested. Only out out of a number of around 70 fitted the lunatic diagnosis. The rest had a thyroid problem. Some were able to walk out with medication and were fine. The rest generally had been in there so long and couldn't function to look after themselves any more. Some of those were fortunate that they had family able to give them medication but sadly a few had no one and had to stay where they were. We have read posts on here of people still being house bound or even bed bound. This report is now over 100 years ago so have we progressed, some would say not a lot. We seem to be the forgotten few but still costing the NHS with symptoms not really improving because the root cause hasn't been addressed properly.
This is my experience as a patient. Currently debating complaint number 5 regarding hospital care that seems to be take it or leave it, and this is cancer screening. If there was one diagnosis that I thought they actually treated in a half decent fashion...
I am sorry you have been let down. I do hope you get to a dose which relieves your symptoms. I honestly do not think that the Endocrinology are au fait with anything to do with hypothyroidism, either diagnosing, or dosing.
Mine was 100 when finally diagnosed after being given many diagnosis for thngs I didn't have. My TSH was 100 but my heart was playing up and had many ecg's. When I switched to T3 my heart hasn't struggled/overactive since. Don't you think it amazing that those on this forum know more than most Endocrinoloigsts and doctors? Many have found how to recover their health on their own by reading and asking questions.
I too have never looked back since adding a small amount of T3.
Prior to T3 my resting heart rate was >100 bpm; as I write it is 79 bpm. My endocrinologist was reluctant to let me try T3 because of established hypertensive heart disease and the potential for further increase in heart rate. Instead the opposite happened, my heart rate decreased and slowly but surely my symptoms began to dissipate and gradually, a sense of normally returned to my life.
I am not symptom free but what I have I can cope with. In my opinion everyone with a desire to try T3 should be afforded the possibility. Perhaps it's not for everyone but we will never know if we don't get the chance to gather that evidence.
Read page 80 on the following link. Maybe your Endo would like to read it but I realise he has to follow the guidelines. Few read research documents it would appear. Obviously they don't want to lose their livelihoods but many on the forum have.
shaws This is a very interesting but in my opinion, one sided literature review spanning literature from 1953-2012.
Your reference to page 80 has been taken from 2 document sources. At a quick glance, one (ref 23) appears to be from a pharmaceutical company dated 2002 but submitted 2001 to the FDA, probably for approval of the drug. Therefore, refers to the manufacturer recommendations.
The other (ref 41) appears to be a robust randomised double blinded cross over equivelance study which was published in 2010. However, it included data from patients who had undergone thryroidectomy therefore is not necessarily generalisable to the wider hypothyroid community.
In my opinion we must be very careful when reading literature not to believe or take at face value everything we read.
Great book on Amazon - Thyroid and Heart Failure. Packed full of research papers - you can Look Inside and view the contents on-line. Endocrinology and Cardiology coming together for the first time for research purposes. 😊
Love you for that! That's what I've been researching hugely. It's makes for pretty depressing reading but T3 can reverse so much, we have to fight for this!
Good morning. I don't know if you are aware that you have commented on a post that is nearly one year old.
I would begin a new post giving your background history and your latest blood test results with the ranges.
Also put a short history into your Profile so that members can read if they wish to know more about your condition without asking repeat questions in the future.
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