How Many of Us All Too Often Feel About Our Experiences With Doctors And Thyroid

[PR4NOW]

Lorraine at Scottish Thyroid Petition posted a wonderful clip from the series 'Golden Girls'. It accurately captures the emotions many of us feel, both men and women, about our experiences as patients. PR

facebook.com/thyroidpetitio...

[Marz]

[Marguerite9]

that is so true. I went to the Doctors a few months ago as I was experiencing a lot of pain in my left breast and although he examined me and said he could find nothing wrong, he said "it is all in your mind. I will give you something for your head". I felt really awful and now I am scared of ever going back if I have any pain in my breast again.

Marguerite9

[Glynisrose]

Its as if they blame the patient when they can't diagnose and of course they'll never do that till they start listening to patients!!

[Hidden]

Well spotted.

[shaws Administrator]

Quite brilliant and should be seen by all medical students and Endocrinology Depts in particular.

[star-flower]

Lovely! I suspect the script writer was speaking from personal experience.

[Clutter]

The blood test says 'normal' so it's all in your head

Good clip

[humanbean]

From his study: "an on-treatment analysis showed that the number of children with IQ <85 born to women with subclinical hypothyroidism who were considered to have been compliant with their T4 treatment was significantly less (9%) than in the control group (15%)."

In the UK, subclinical hypothyroidism is considered (by the medical profession) to be a minor problem that doesn't need treatment. If the patient complains that they have symptoms then the doctor suggests anti-depressants will help. If the patient refuses the anti-depressants then the patient is considered to be non-compliant and the doctor may remove the patient from their list.

[greygoose]

Ummm... do you think you're telling us anything we don't already know?

I don't think you know how things work in the UK. Or in France, where I am. Same system : blame the patient (even if you do know what you're talking about and have just given her a drug that will cause that particular symptom. It's got to be her fault, hasn't it, because patients are stupid and liars. Besides, it's so much easier to blame the patient than to actually do what I'm paid for and search for what's wrong with her...)

I don't feel any sympathy for doctors, not after all they've done to me. I've said it before and I'll say it again : I've never seen a doctor (and god knows how many I have seen) that hasn't made my condition worse rather than better, for so many different reasons - one of them being that they don't listen to me.

In France the system is that a doctor can take as much time as he likes with the patient - I have waited up to two hours after the time of my appointment because the doctor was spending more time with a patient. So don't blame lack of time. And it doesn't make any difference. They still don't listen, treat you like a dim-witted child and blame you for everything that's wrong with you. One doctor actually said to me one day, when I was very hypo because she'd recommended I eat soy! She said : you have to take some responsibiliy for the state you're in. Why??? I've lead a very clean life - no drugs, very little alcohol - not much sex, either, come to that! (And then I look at Mick Jagger and I'm green!) And I've had this condition since I was a child and was just told I didn't do well in class or at games because I was stupid and lazy. And I was fat because I ate too much. Right! I was born in England at the end of WWII. There was nothing to eat! And what there was was so disgusting I didn't want to eat it! Did they think I had some sort of secret supply of black market chocolate or something at the age of 8??? But that's how doctors apply logic.

So what did I do? Why am I responsible for my problems? I bet you can't answer that! But I can. Nothing. I did nothing to deserve this. But the only way to get out of it is to learn all the things doctors are supposed to know and help myself. Because doctors won't! And I did nothing to deserve the kind of treatment doctors have handed out to me. I go to my doctor - like you're supposed to do, like a good girl - and he tells me, with a Superior air, it's all in my head, there's nothing wrong with me. No, doctor, not IN my head, ON my head. You can't fake hair-loss! And the anti-depressant he gives me - I didn't ask for it, I don't want it! - isn't going to give me back my hair! I've played the game, I've trusted them. And in return thay've made me ill.

And some of the things doctors have said to me would make your hair stand on end - if you didn't die laughing. So don't come to me with your sob stories about how hard the life of a doctor is. You had a choice about whether you became a doctor or not. I didn't have any choice about my Hashi's.

A Patient.

[greygoose]

OK, so what I saw when I clicked on that link was a post about a girl that had gone to Belgium for hormone treatment and when she got back her mother was arrested for trying to poison her! I would suggest people look at that and take action!

It is really terrible! That poor child!!! Thierry Hertoghe is a saint. Truly, he is a wonderful man. I would send my testimony if it applied, but my case wasn't like that at all. But I've shared it on Facebook and I do hope lots of people will send their testimonies. The NHS cannot be allowed to get away with this!!!

Grey

[PR4NOW in reply to greygoose]

Grey, the link to the Golden Girls clip is now about the fourth post down. There is a picture with Bea Arthur standing at a table. PR

The situation with the mother and daughter is a crime against humanity and I hope will draw the support of many in the UK and beyond. PR

[greygoose in reply to PR4NOW]

Thank you, yes, I did see that. And I've seen that clip before, anyway.

But the thing with the mother and daughter nearly ripped my heart out! I had to share it an let people know what's going on. You're right, it is a crime against humanity! How can such a thing happen in this day and age? It's like going back to the dark ages and burning people for being witches. How is such ignorance possible???

Thierry Hertoghe is... a wonderful man. I've never met him myself but know people that have. The best doctor I ever had was one of his students. The idea that he would prescribe anything that could hurt anyone is just so ludicrous. The man is into saving lives, not taking them! Don't these people know how to Google?

Anyway, mustn't go on, but I do hope that you - and everyone else - will share this everywhere and that a combined effort will free these two poor, poor people.

Thank you.

Hugs, Grey

[Hidden]

I'm afraid to say that I've found GPs in the UK to be lacking in basic knowledge and bordering on contempt for their patients. Their top priority is to cover their backs followed by protecting their job. Lowly patients come after that but heaven help an informed, educated and knowledgeable patient.

[PR4NOW]

aDoctor, you said "A lot of Armour patients I see are hyperthyroid at some time during the day."

That is an interesting statement, could you expand a little on what you are talking about? I would be interested in hearing what you think the alternatives are. I take it you are a senior practitioner from your saying it has taken you "forty years". PR

[humanbean]

Hi aDoctor,

Based on the way you write I am assuming you work in the US. There are more options for people with thyroid treatment in the US than we have in the UK.

The following are all things that I have read about happening here or have experienced myself :

1) For many people, just getting a doctor to agree to carry out thyroid tests is very, very difficult.

2) Many doctors seem to have no knowledge of the symptoms of thyroid disease at all, and they say to their patients that the symptoms are non-specific, so there is no justification for doing thyroid function tests - often the patient is told they need to eat less and exercise more, and just sent on their way with no help.

3) There is little understanding (for example) that high cholesterol is a frequent finding in hypothyroid patients. The doctors refuse to accept it is anything other than a "lifestyle" problem, or possibly a family history of heart disease that is the problem, that the patient could fix if only they ate better and exercised more. The fact that cholesterol will drop when thyroid hormones are optimal is often unknown. UK doctors love giving out statins - they get extra funding points (i.e. money) for prescribing them.

4) Anti-depressants are also drugs that earn UK doctors more money than thyroid treatments. Thyroid problems simply aren't lucrative and aren't sexy. Endocrinologists, in the main, are diabetes specialists and know nothing about the thyroid.

5) Some doctors simply don't understand how the thyroid works. I've seen someone on here who had their levothyroxine reduced because their TSH was too HIGH! (It was about 50.) I've seen someone with a TSH of 19 being told that their problem was borderline, and "let's just wait and see and re-test in 6 months".

6) Prescribing natural dessicated thyroid, like Armour or other brands, is almost unheard of in the NHS. Many doctors have never heard of it. Those that have heard of it believe it is "alternative", untrustworthy, and only prescribed by quacks and taken by idiots.

7) Getting T3 is very slightly easier (but that really isn't saying much). Comments have been made by "eminent" endocrinologists that makes it clear they think people want T3 because it gives them a "buzz". Patients have been told "Cocaine will make you feel good too, but we don't prescribe that either."

8) It is accepted by doctors that a high (over the range) T3 may be a sign of having an overactive thyroid. But actually getting a T3 test done is damn near impossible. It is NOT accepted by many doctors that having a T3 level under the range may be a sign of having an underactive thyroid. And in fact T3 levels are deemed to be irrelevant in diagnosis or treatment of hypothyroidism. The logic of this escapes me.

9) Adrenal problems often go hand in hand with thyroid problems. In the UK doctors either don't know this, don't believe it, and only believe that adrenal problems occur in Addison's or Cushing's. The idea that it is something that could be an issue that needs fixing before these two extremes are reached is just laughed at.

10) Want to get a Free T3 test? Or get your antibodies measured? You may have a long, long wait. Being positive for antibodies is considered to be of no importance. After all, if the doctor waits long enough your thyroid will get killed off or eaten away, and then they can give you T4 treatment. What more could the patient want?

I could go on and on. The number of people who have been left to rot, who have been treated for every symptom but never have the root cause investigated, is enormous. We often end up bed-bound, jobless, with wasted lives.

aDoctor, I realise you think you are helping with your posts. And if you could help us to get believed, treated properly, given choices, then we would fall all over you and sing your praises. But you need to understand the situation so many thyroid patients find themselves in in the UK. Any doctor writing here is going to have a hard time winning friends. We've been dismissed, jeered at, patronised and condescended to for years or decades by doctors. You'll find it hard to get a hearing. It isn't personal. We don't know you. But by writing here you automatically represent a profession that has made us suffer for too long. So you will have to accept that politeness and good manners and hanging on to your every word is going to be difficult for us.

Edit : Perhaps I should have reworded some of the phrases/sentences. I have no right to speak for everyone else on the site!

[greygoose in reply to humanbean]

I totally agree with you, HB. Many of us - myself included - think that a doctor has no place on here. You say you want to learn, but you don't seem to be Learning much. You just seem to be trying to ram your opinions down our throats.

I'm sorry if you considered me rude, it wasn't my intention to be rude. I'm not a rude person. Sometimes I'm too b****y polite! You're so English, my French friends tell me. But, you touched a few sensitive nerves there. Although, judging by your second rant, you still have no idea you did that.

Personally, if you really want to learn and not just lecture, I think you ought to take a back seat and just read for a while, until you get the hang of things here.

Oh, and by the way, you and your options! Did you know that NDT, along with several other natural hormones, is illegal in Franch? We don't have options.

Grey

[Clutter]

aDoctor,

"A lot of Armour patients I see are hyperthyroid at some time during the day." How can they be? TSH suppressed, FT4 and FT3 elevated? Or do you mean they experience a temporary peak in T3 after taking Armour?

[Clutter]

aDoctor, UK National Health Care is funded from direct taxation and health care (excluding dentistry) is free at the point of delivery. Most general practices are partner businesses funded according to the GP contract and also employ salaried GPs. UK patients are limited to the GPs they can access according to the GP catchment area in which they live so unlike the USA they can't shop around.

The hypothalmus/pituitary/thyroid loop is understood by many on this forum and that high TSH with normal or low FT4 and FT3 indicates primary hypothyroidism. Low or undetectable TSH with elevated FT4 and FT3 indicates hyperthyroidism. Low TSH and low FT4 and FT3 can indicate secondary hypothyroidism (hypopituitarism) but this will be missed as long as only the TSH is tested. Hypothyroidism is not diagnosed until TSH is > 10 unless there are elevated TPOab or TGab when it may be diagnosed at >5 to prevent progression to overt hypothyroidism. Despite guidelines it's luck of the draw as to whether a GP will test antibodies. Most endocrinologists are diabetes experts with thyroid as a tag on.

It's estimated that 80% of hypothyroid patients do well on the generic Levothyroxine which is the only treatment recommended in the UK thyroid guidelines. The other estimated 20% who remain symptomatic are often under medicated, don't convert T4 to T3 well (particularly thyroidless patients), don't tolerate T4 monotherapy or don't tolerate synthetic T4. Generic Liothyronine (T3) may sometimes be prescribed in combination with T4 for thyroidless patients and poor converters but it is the mother and father of battles to get it prescribed. Some patients don't do well on synthetic T4 &/or T3.

Armour and other NDT aren't licensed for use in the UK so few GPs/endos know what they are (they aren't taught about it in med school) and fewer still will prescribe it. Unlike the USA, UK patients are allowed to import up to 3 months worth of non-controlled drugs for their personal use which is what most NDT users in the UK do. There have been 7 prescriptions for Nature Throid and 191 prescriptions for Armour in England (excludes Scotland, Wales and N.Ireland) during 2014. Prescriptions are usually for one/two months supply and not longer than 3 months supply.

healthunlocked.com/thyroidu...

[PR4NOW]

aDoctor, your posts are a sad commentary on the sorry state of affairs in American healthcare. The health care system in the US is the perfect example of a 'Rube Goldberg' contraption. Growing numbers of both patients and doctors are thoroughly disillusioned with the system and are seeking alternatives. Change will come but it is going to be painful. The people who profit from the current system will be loathe to give up either power or money. Patients taking responsibility for their health is a part of that change, many times because it is the only successful path to regaining their health. PR

[greygoose]

I did see the word 'quiz' but couldn't work out where it was. A quiz is supposed to have questions. I didn't see any questions. I did see '-25% of men who take beta blockers develop depression. Beta blockers inhibit thyroid hormone conversion.' But what am I supposed to do with that??? It isn't a question. Am I supposed to say if it's right or wrong?

I don't see the point of it. And I don't suppose anyone else did either, so don't complain if no-one mentions it. I like a good quiz as much as the next person. But that was nothing like a good quiz! (Ah the old jokes are the best!)

Very weird...

[Hidden]

Hello everyone

This is my first ever post concerning my health, and I've come here out of desperation, I really hope someone could help!

I am 42 years old now. A year and a half ago I started taking Levothyroxine (25mcg) after a blood test revealed that I suffered from Hypothyroidism. Then about a year ago I started to develop insomnia, which gradually worsened to the point where I was waking up at 3am, and that was the start of my day, everyday, for months.

I went to the doctor again (a different one by this stage), who prescribed zopiclone; this had no effect whatsoever on my insomnia, and I still woke up every day at 3am, but now with a foggy head.

Then I started to develop diarrhea which also worsened. I had a stool test, which was clear. I went back to my doctor, who told me that I should not need to take Levothyroxine, as the initial diagnosis showed I was only *slightly* Hypo, so I stopped taking it. He also told me to stop the zopiclone, which I did.

Then about 1 week after this, and almost overnight, my sleep and diarrhea were both fixed at the same time- I had the best nights' sleep that I'd had in a year every night for the next 3 weeks.. Then they both returned again with a vengeance, and I am back to starting my day at 3am again.

I am really desperate with this. I believe that I am suffering from *Hyper*Thyroidism, all the symptoms point to this.

The doctor seems to treat me as if I'm an idiot, and will not listen.

Can anybody help me with this? Has anyone else had a similar experience?

Thanks for your time,

Jon

[PR4NOW in reply to Hidden]

Jon, you have posted into a post that is two weeks old and is unlikely to be seen. I would suggest going to the 'home' page (link below) and putting this up as a new post. That way you will likely get more feedback. Graves is a possibility on the 'hyper' side of thyroid problems. There are quite a few on the forum that have experience with the hyper side. I only got notified of your post because I started this post, otherwise it would have gone unnoticed. PR

healthunlocked.com/thyroidu...