I have had enough (just ranting out of frustration)

[Justiina]

It's heart breaking and simply ridiculous that people's health is kept as a hostage of pharmaceutical companies.

We are not given the rightful information of how to improve our health or stay healthy. All we get is lies.

I am done. I can't stand unfair situation where we as the citizens of this world, are not given rightful information, treatment and tools how to achieve life that is about enjoying the good health and good wellbeing.

That information, that medication, that right belongs to me. To all of us.

Studies, research and technology that would help us are withheld because someone wants to make money by providing outdated and pretty much barbaric treatments. Think about dentistry, there are a lot of stuff going on , but it is kept hidden as it would cause someone to lose money. . Who cares about the health of us as long as there is money involved in these old techniques. There still are dentists that drill your teeth just because they can even though it was not necessary, but we all cannot afford second opinion ,which could be very different saying no need for any type treatment. No way to prove it unless you had xrayd. We are not told the truth about our bodies that belongs to us. My teeth. My blood. My test results.

Don't we all deserve more? It's 2017. It's freaking 2017 and feels like it is 1600. Common people are just money makers for those who pull the strings. We have no other value. They do not want us healthy. Which is nothing but sad and wrong.

And it's tax payers paying the bill. It's my money, it's your money, it's money we have no choice ,but to hand over to big pharma without getting nothing but mumbojumbo back.

Think about antibiotics, the guy who discovered penicillin stated that it should not be used without a cause and bacteria develops resistance over time. What happened? Antibiotics have been fed to us, porks, cows, chicken and what happened? We have super bacteria that is resistant to all known antibiotics. Why this happened? Good question. It wasn't about greater good. It wasn't about better health. They became greedy. Antibiotics for all! Go to India and you get them anywhere without prescription.

All type of flu and this and that jabs? What a sad truth. Some are necessary, but more and more prevent this and that disease jabs come to market like lollipops without proper clinical trials. How much that is for greater good? It's not.

Big Pharma doesn't care about the health of people, sicknesses thrills them.

They do not have long term vision to improve the health of people, it is 0 interest. It's all here and now. No matter who suffers.

But it is people behind these decisions and choices, they just hide behind the company. It's people turning against other people, ugly truth. But many do not see it that way, as we do not see these people representing these companies as themselves even though they are exactly the ones making the decision. Company has a name , but all is run by human beings.

It's seen , considered and handled as free will, democracy, capitalism etc.

What choice do we have? Not much. Big pharma plays the piano and we dance or die. Is that fair? Is that fair at all? This is not what I signed up for. I had no choice. I was not given a choice, and I can't accept it. I just can't. I deserve more. I demand a new deal, new rules. Refuse to play with these cards given to me. No more.

I can't deal with this. It is against everything I believe in. I believe in greater good, I believe in equality. I believe in good.

If I am nothing to this world , what am I? I refuse to hand over my money to big pharma and get nothing in return. It's my money, I earned it. I want it to be used for greater good. I refuse to fund 0 studys of how wearing your underwear inside out causes foul smell.

Did you know that women with depressive disorder prior breast cancer have worse prognosis than women with no history of depression? What has their cancer to do with depression? NOTHING, but women with depressive disorder prior breast cancer are treated poorly. Just because they were once depressed they are treated like trash.

Did you know that breast cancer doesn't always need to be treated by radiation or cancer medication after surgery? Now you know. Radiation after non aggressive breast cancer does nothing else but put you under unnecessary risk. There are tests that will tell you what type of cancer you have. Probably not widely available for a very mysterious reason.

I am sick and tired of this. It's disheartening that we have taken a huge leap in past few decades in every other industry, but medical industry is in dark era. And the potential this human kind has. We have excellent scientist, doctors and technology, they would give their heart and soul to consentrate on treating us healthy, doing better research, but these people never get the chance to shine as it isn't profitable enough.

It's unfair.

I have suffered from nausea for nearly two decades, which made my life just unbearable. Every day was a struggle to eat. I was offered ad's , PPI, anti nausea medication and counselling. Nothing worked.

What happened then? Supplementing B12, vitamin D, A and last but not least K2 relieved my nausea and I can eat better. No doctor ever suggested any of these. They gave me no hope, nothing can be done, I am hypochondriac, and just have to live with it.

I had to study English to get all this information, I had to read through tons of studies and I had to pay a lot to buy these supplements.

It ruined my life. I lost 10 years of my life searching for help, learning and understanding. I lost everything. I have nothing. Nothing at all. I haven't lived my life at all during this time.

I am bitter. I can't deal with this bitterness. I can't forget and forgive my health was ruined by giving me multiple courses of unnecessary antibiotics and nothing to help with consequences. I guess my body was very depleted of all vitamins and nutrients.

I am still not healthy and even though the nausea is gone, I am still in poor condition. Just waiting if someone would care.

It sickens me that vitamins and nutrients are not a part of health care. To me it makes sense that nutrients and vitamins are a part of wellbeing. Health care cannot ignore this or otherwise it can't call itself health care. Now it's just treating symptoms.

What about preventative health care? Where that happens? Apparently nowhere. Health care is a playground of big pharma and doctors nothing ,but puppets of big pharma.

I as a citizen of this world, demand new rules. I as a citizen of this world, demand transparency of big pharma, providing all information of medical studies to be published, good or bad.

Big pharma, pharmaceutical companies should work for us, serve us instead of squeezing every penny out of our pockets until we are not just ill, but poor.

Good health and wellbeing belongs to all of us.

I am ashamed of being a human being. I am ashamed of those who work for big pharma to just collect money. That's not humane. That's disgusting.

I am sentenced for a life to live in this misery and agony. It's unfair. I have more rights. It's my health and I have not signed up for handing it over to big pharma. They are holding my health as a hostage, not giving all information and tools to improve something that belongs to me. How come they have the right to do so?

Sorry for ranting, but it physically hurts me this happens to us. It is disheartening and wrong. I have hard time to tolerate wrong.

I can't stand the wrong that happens when people are given medication that they do not need, medication that can rob their life for good. I .. I just can't.

Big pharma is laughing at us, they are rubbing it on our faces. If it's already known how dramatic adverse affect ad's can have ,why those are still prescriped. Ad's that can ruin your life, make you a zombie, ruin your relationships and numb you. How's that right? How? Explain it to me. I will never understand.

I understand some need them and will always need them, but that's the case when the positive effect is bigger than the negative. That's when the quality of life is better with those side effects ,than symptoms of the disease.

Statins? What they are not tried to cure? Now they test if it works for MS. Side effects statins are known, but boldly they are offered to treat any illnesses. Seriously?

I just needed to get this out of my chest. If I drop dead out frustration at least I got to say this. My life is nothing , but waiting and hunting down any information I could use to have a better quality of life. Day After day. As since being ill for almost two decades it's nothing , but sure that this just doesn't go away by itself.

This isn't the life I ordered for. Where I can cancel my subscription for life? I am not interested of this anymore. I have no power over this, it has become a part of my identity. I fear I will never get to be the person I am supposed to be. I will always be this illness. That ain't right.

[diogenes Remembering]

Don't despair. As long as there are one or two scientists opposing this comfortable agreement, the truth will out. OK, ostriches may prevail for a while, but the objective sandstorm is whipping their butts like it or not and ultimately will force heads out of the sand. No false concepts can survive in the end: but it will take time for them to die and be replaced by something like the truth. In the meantime, heads down in the storm which will die out sooner or later. Plug on is the motto!

[Justiina in reply to diogenes]

I know, it is just so disheartening to experience all this. Change is eventually going to happen , I just hope it was now!

[Camdentown in reply to diogenes]

dear Justiina. You are making a difference just by posting here. We are tiny voices, but cumulatively over the years we are making a difference. If we are sceptical of Big Farma we must argue our case with everyone we know. Most people don't bother to read; we must try to educate them, and to ally them to our way of thinking. Don't despair. You are in the right place for support. Chin up.

[Raventhorpe]

Well said Justina ! if you run for prime minister I'd vote for you lol.

[Justiina in reply to Raventhorpe]

thanks , had to laugh out loud. Nice way to start a day!

[helvella Administrator Thyroid UK]

You write some excellent posts, Justiina.

It truly is unacceptable that you have to.

Please don't cancel your subscription here - you really would be missed.

[Justiina in reply to helvella]

Thanks! I love this forum and that I can share my thoughts and feelings here as I know most of you feel same and truly understand. Felt good to rant a bit and read these responses. Sometimes the cup just spills over. This is safe place to rant

[nightingale-56]

Justiina your posts are so uplifting and sensible and now you sound so down. Don't give up hope and stick with the rest of us. You would be sorely missed if you leave us now as you are part of the 'thyroid family'. xx

[joydot]

i concur with your observation and raise you one... sending you best wishes and a (:

[Justiina]

I sometimes feel that way too, there must be a reason. I am quite very different person than I was before falling ill. This has changed me for better. I have strong believe in myself and the strength human being has. I can cry my eyes out and feel very desperate and few hours later I bounce back being stronger and more determined. I need to feel low to find the strength and see things clear. I am not afraid of those dark moments as I have learned they are important to discover new ways to think and they teach me more about me.

This community and all people here give me strength, safe place to trip and fall. <3

[Justiina]

I read about it and was shocked. When will they say statins fix thyroid ? How about HIV, ebola? Poverty? Stupidity?

My mom has to take PPI'S as her gut is ruin because of pain killers. I had some persuading to do to get her supplement vitamins, but eventually she agreed as she saw how dramatic the changes were for me since I started supplementing B12. Still most doctors don't have a clue how bad PPI'S can be

[Hidden]

I am promised a reply to my complaint about the blacklisting of NDT by the end of this month from those who dictate their recommendations to many CCG's in my area. I sent the original complaint last September. I know I have given them a lot of trouble as they have been unable to write a replacement recommendation themselves and have had to ask an outside person to write it for them. I suspect it may be Vanderpump himself.

I do not understand why they wanted to involve themselves by writing such a load of utter drivel by themselves. See if you can find any facts at all in this statement which reflect the undistorted truth:

panmerseyapc.nhs.uk/recomme...

I do hope that everybody else is giving those who wish us to remain ill for the rest of our lives as much trouble as they possibly can. I realise how difficult this actually is for so many who remain intensely ill, but please make a valiant attempt.

[Crazy_CatLady in reply to Hidden]

The statement they have come out with on that document is not backed up at all by the supporting information they have posted at the end. That shows that more people prefer NDT, and that side effects are rare. It doesn't back up their stance at all!

[SilverAvocado in reply to Crazy_CatLady]

Really depressing how lightly they take the fact patients prefer it. To me it suggest that if patients prefer it but their 'objective' measures don't show a difference then they should find out what's important to the patients and measure that.

Also in that study the patients lost weight. Which is about as objective a sign of reduced hypothyroidism as you can get.

[nightingale-56 in reply to Hidden]

Hidden I think I am going to take a copy of this thread to the Presentation I have just posted next week, and leave it with the Chief Pharmacist, just to make her think and hopefully reflect on what she and her colleagues have put us through in recent years. Thanks for posting this link.

[SilverAvocado in reply to Hidden]

Thanks for the link Panda321, I found it very interesting, am still trying to get my head round what CCGs are and how they work.

The really weird thing about that document is that it has summaries of two research projects in it. I started to read them and the first one had a tiny sample size, so I was thinking that it would just be. One nonsense to discredit NDT. But then it goes on to show that NDT is a little better than Levo! Then the next study is showing that NDT considerably reduced symptoms in a group of patients who were not better on Levo!

Just very strange studies for them to use, when so many badly done studies exist that do support Levo.

[Justiina in reply to SilverAvocado]

I guess they have no idea what they are talking about! They have false believes of NDT and try to find anything to back it up without actually reading those studies!

[Justiina in reply to Hidden]

Thanks for that link!

[diogenes Remembering in reply to Hidden]

The first statement in the PanMersey document is factually wrong.

It states: The Royal College of Physicians (RCP) recommend that levothyroxine (T4) alone is used to treat hypothyroidism. Most liothyronine (T3) is produced from de-iodination of circulating T4, thus prescribing any additional liothyronine will be inconsistent with normal physiology, has not been unequivocally proven to be of any benefit, and may be harmful.

The point is that patients with no thyroid don't have normal physiology because the T3 supplied by the gland is no longer there. The importance of this contribution to the body's deiodination of T4 to T3 is all the greater, the higher may be theindividual's need for FT3 (ie setpoint high in range) in the healthy state. The statement above is all embracing and fails to take patient variation into account. The above is beautiful example of the "shoehorn" (one size fits all) limited thinking. It simply denies the importance of T3 directly made by the thyroid in any circumstances.

[Justiina]

Yeah. They see a problem like :ohhh too much stomach acid must be the cause of reflux, if we get rid of stomach acid we get rid of the problem. One treatment for all.

Well in the end they are correct, getting rid of stomach acid fixes the problem of too much stomach acid. Simple logic. Unfortunately as we know it doesn't work that way.

Nowadays they think majority of reflux is caused by eosinophilic oesophagus. Which is allergy and PPI'S won't help.

Then we have low stomach acids and nutritional deficiencies. Smallest problem is pure over production of stomach acids and I figure half of that is caused by large doses of corticosteroids.

I felt miserable on PPI'S, but for me the only long term side effect was nutrients deficiencies, so I can call myself lucky!

I am sorry to hear for you it isn't that simple

[cwill]

Scientists love bell curves but only a number of people fall into the best result centre. And the effect is related to the tools employed to measure what ever it is, fatally flawed as we know in our case. Obviously those of us here have worked out that we are the outliers or simply feel that we could be better. In my practice I always felt that the non-responders were way more intersting and invariably had something to teach me. I didn't realise that my life was going to be such a learning curve.

Why is the science of thyroid about reducing the variables that so clearly are present by lumping us all together and ignoring the science of the non-responder? Totally blind to what is right in front of them. And so convinced of their stance that they produce really flawed science to back up their arguement.

[silverfox7]

I have been given a drug to lower oestrogen following breast cancer and I've not been right since. So I sort the advice of a pharmacist at the cancer hospital who didn't think there should be a problem but wondered how I knew about T3 so after I'd said my late husband was a science based endocrinologist and I worked in Physiology she listened when I said no one will test it and they aren't aware that the tresultsxare read differently. She was really interested and thanked me for explaining! So I hope she passes the info on! I shall go to the endo this this armed with info from the Thyroid Uk site saying that oestrogen suppressor do effect medication and guess what I did that myself a while back so be interesting to see how my bloods are looking. Hopefully if we can keep pushing then the tide will start to turn.