Thyroid UK

Why is it still a minimum dose?

Why do GPs/Endos continue to just give the bare minimum amount of medication (hormone replacement/Levo) to folk when their TSH is clearly high - pituitary telling the thyroid to produce more hormone? Is it just ignorance? T4 isn't even expensive?

Are medications for Diabetes, HRT, steroids for liver disease etc, statins or meds for other disorders kept to a minimum or prescribed as needed? Is it just us?

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Ignorance, uneducated, don't care to acquire knowledge about thyroid function, thyroid medication and symptoms of thyroid disease. Because they don't know any better, and don't care to know any better.

I'm not sure how those medications are managed in the UK. Where I'm from, people needing those medications are closely monitored and medication is properly dosed so that patients function as best that they can.

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Where are you from so I can move there!!!!!😧

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Most doctors recieve thier training from drug company sponsered talks. We are cash cows for the drug industry so if under treated or untreated drug companys can make a lot of money out of doctors using a new still patented remedys for our multiple symptoms.

o

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What new patented remedies? People are still being treated with the same old T3, T4, both, or NDT. Sure, there are name brands, but many people gravitate towards generic. How would drug companies make money if doctors leave patients under treated or untreated? These companies need 'scripts written in order to make money.

First they receive their education. Very little of it is on thyroid. If an MD, I don't even know that they have one complete class on the thyroid. It's probably lumped into an endocrinology class. Even less or no education is on autoimmune thyroid diseases. If an endo, there is usually one class on thyroid function and very little focus on autoimmune thyroid disease. If they are an endo, the rest of the focus in mainly on diabetes, then other disorders.

For some reason, many MD's and endo's are taught that there is only one thyroid hormone, T4. They forget that T3 exists. Then, they can't interpret lab results for the life of them. They think anywhere in the range is a-okay. jHigh? Low? Oh, you're good! Then they don't understand the significance of symptoms or their correlation with FT3 and FT4 levels.

Thank goodness for the drug companies! At least these docs are receiving a little bit more education on the thyroid, even if it's not sinking in. Hallelujah! Even though it's mainly education about T4.

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The drug companys do not educate about thyroid except perhaps employ a professor wheetman to expand the theory that people can live quite happily with out a thyroid on a low dose of T4.

The newly patented remedys are not for your thyroid they are for all the symptoms you get if untreated such as new constipation drugs, migraine tablets, antidepressants, dry skin ointments, dementia drugs if memory affected, weight loss medications, pain reliefand fertility drugs. We really are drug company cash cows and have nothing to thank them for.

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Yes, they do. Have you ever sat through a vendor luncheon? They have to educate as to what their drug will do for a patient and also educate why their drug is the best over competition. This is part of a drug reps job: to sell the feature, advantages and benefits of their product.

OH! Those remedies! Put a band-aid-on it mentality! Instead of getting the patient to optimal where all those symptoms go away, they give you more meds. I get it now! Thankfully that didn't happen to me. I'd already had migraines for a million years, so already had that med. My docs recommended diet improvements and more fiber.

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Yes they do educate but only an agenda that suits them such as the benefit of a new drug or a speaker who says nothing to undermine their potential profit. Thye wouldnever pay for a doctor who supports the use of T3 or higher doses of t4 to talk as good treatment would erode the profit. See if you can see some of Dr Wheetmans talks on thyroid. He is theonly person they employ to teach thyroid try googling and you get an idea of all the rubbish out doctors are feed re thyroid. Itis not education it is lies, abuse and propoganda. Icannot bear to even lookat Dr wheetman but if you are feeling brave google and see if you can listen to it.

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How does good treatment erode profit? Good treatment means more scripts are written and higher doses of medication are needed to reach euthyroid status. Once there patients keep buying the meds. Even if under medicated their whole lives, patients are so desperate to feel better, they keep buying the scripts. All those scripts equate to profit.

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Not as much as all those constipation, depression, statins etc that you would take if undertreated. Thyroxine has been available for 30 years plus and out of patent for at least 20. It is cheap and profit very low compared with taking several drugs for symptoms related to undertreatment. I am going to opt out of this discussion I think as not getting anywhere but round in circles.

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Levothyroxine was first used over 100 years ago and was first put on the market under patent almost 60 years ago. Any name brand thyroid medication is under patent. Generic levo became available 14 years ago.

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Levothyroxine was, technically, extracted almost 100 years ago, yes. But it wasn't available for treating patients. An account of its isolation is here:

jbc.org/content/39/1/125.fu...

Levothyroxine was never patented in the US - and I don't think it was patented in the UK.

Brand name levothyroxine is not usually under patent. That is evidenced by products like Synthroid having been on the market for several times as many years as patents are valid for! Some products, such as Tirosint, might well be under patent for specific aspects of their formulation and production. There are several extant patents for specific steps in manufacturing levothyroxine - though I have no idea how many are actually in use in producing real world products.

I simply do not understand what you mean in this sentence: Generic levo became available 14 years ago.

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If we feel optimal and well we won't need care so often! Less visits, less side effects, less drugs for side effects that create more side effects and involve more specialists. Patients who feel well are inversely proportional to more income!

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MandyJane means treating each symptom as if it were a disease, and prescribing a different drug for each one, so that people end up on a whole shopping-list of drugs, but their hypo remains under-treated. Antidepressants, PPIs, Beta-Blockers, statins, etc. etc. etc. That's how the drug companies make their money. That's why hypos are cash cows for Big Pharma. And the reps don't teach them anything about thyroid, because they don't know anything about thyroid. They just push the drugs their latest drug to 'treat' symptoms. And, because the doctors don't know anything about thyroid, either, they buy into it and prescribe the drugs to their hypo patients. Nothing to do with T4, T3 or NDT. Nothing to do with making the patient feel better. Just about money.

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I agree GG & MJ. Never a truer word said.

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Yes, that happens here, too. Never get to the bottom of the cause of the symptoms. Here's a pacifier instead! Too funny! Early on, I was prescribed gabapentin (3x), antidepressants, and beta-blockers. I never once took any of those meds that were prescribed. I actually did purchase one gabapentin, one antidepressant, one beta-blocker. I never even tried them because I read about the side effects, plus I really thought something else was going on and my symptoms where from something greater. Bingo!

I do believe there has to be a component of making the patient feel better, at least where I'm at anyway. If all they cared about was money, and most patients still felt bad after seeing a certain doctor, not making a patient feel better would be the kiss of death for that doctor. Patients would stop seeing them and they'd write negative reviews. Soon, the doctor would go out of business or be fired. Here, they want patients to be satisfied. That's how it works here, anyway.

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That might work in the US, but not in the UK. On the NHS, you don't have an awful lot of choice which doctors you see. And you don't pay the doctor directly, anyway, he gets a salary. So, he couldn't care less if you come to see him or not. There's a shortage of GPs, anyway, so sometimes you have to see the awful ones. But, they do get financial incentives for prescribing certain things - and levo isn't amongst them!

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That just sucks, not having a choice, and all the rest of it, too! I feel for you guys over there!

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From experience, I feel for you guys across the pond too - you have such choice & way more drugs per disease than us!

We just pop to our local GP ('free' but paid from our 12% National insurance contributions) who looks up the nearest specialist for a referral - however we can choose our own consultant.

Anyway it seems we have better forum sites here :) :) x

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You do! You all have an excellent forum! :-) There doesn't seem to be too much of interest or demand for one here. They exist, but they are not as special as yours.

Do you all like that it is free even though there's not much flexibility; do you think in general people feel it's adequate care? What does a consultant do for you? When you say you just pop in, do you mean you can drop in with no appointment at any time? How long is the wait? We can do that too, at Urgent Care facilities, although many require appointment and you can always get in somewhere the same day.

Just like with you, some doctors are really great, and some are really not. In general, I think most are good. The bad ones simply don't make it. As with anything in life, need to vet your options and choose the best one for you.

:-)

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I am surprised there's no interest or demand for a Thyroid forum in the US. There's loads of sites like Mary Shoman's & Janine's STTP - bibles really!

Yes I can drop by my GP practice, I'm in a rural village, emergency appointments same day. Pharmacy included.

Or we can go to a 'drop in' centre for minor stuff or Shropdoc (Countydoc) out of hours - or A&E for emergencies.

A GP consultant referral is about 6 weeks - but sooner if urgent.

The problem is getting the GP past thinking you need antidepressants!

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I wouldn't say no interest or demand, just doesn't seem to be enough to sustain forums. There are forums, but they are poorly designed etc, so lack a large enough following to hold people's interest.

Right, when was the last time antidepressants address whatever is the cause of the depression in the first place? ;-)

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In London I can easily wait 4 weeks for a GP appointment. Sometimes when I phone they just tell me there are no appointments at all with my doc and sometimes not with any, and I am told to try again the next day. It has just taken me 8 days just to get an appointment booked and now I have to wait til 9th May for the actual appointment!

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Doesn't always work in the US either! Worked 40 years in the US Healthcare system and we have some wonderful healthcare providers and also some uncaring, greedy ones! And some who probably mean well but are in Big Pharma's pockets.

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I spent quite a few years on US forums researching my other condition (TOS) - loads of hope & information to start, ground-breaking research (via athletes), wonderful recommended specialists & new procedures -

but after a while & post-ops , I saw many adverse reports & realised the physical problems were not solved - in fact were made much much worse, nerve pain, now seen as psych problems, reverse procedures then litigation, compensation etc. folk left in a wheelchair with no insurance left, painkillers getting stronger .....

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That sounds horrendous! What kind of procedure was it?

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'Specialists' liked to take the first rib out to ease the nerve/artery/vein impingement, rather than easing the scalene muscles to start...or even just shave the cervical (neck) rib a bit, if there or the fibrous mass,

That's when I observed postings about unnecessary nerve replacement/moving and carpal & cubital tunnel ops -

when all it was (in my case & others confirmed)...

Low Vitamin D

& They take B12 injections as a pain-killer

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This must be for thoracic outlet syndrome.

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You are right on target. The video mentioned earlier. "Killing for Profit" is not science fiction.

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In general they're the NHS trying to cut down on prescription.

Since last 5 years I've had troubles to get ANYTHING prescribed. And couple of drugs withdrawn.

From thyroid meds, contraception, diabetes, just recently blood pressure controlling drugs and refused prescription for a medication advised by consultant even just a week ago!

95% of medication I have to scrap and scramble for privately because I was refused by NHS GPs.

So I'm left to either to go WITHOUT or buy them from somewhere else.

It's been my reality for 5 years and I believe lots of other people are in the same boat. It's not only thyroid meds I'm afraid.

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The Nhs wouldsave million if it treated thyroid and b12 defianceincy properly

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Most of them don't know how a disease can affect a person's life.....................

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Isn't that the truth? And they certainly don't know what to do about it, either!

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There are some Doctors who are breaking the mould, but it will take time. Dr Malhotra makes a fascinating and worrying case against the pharmaceutical companies (and food industry) in a recent 2-hour presentation to the European Parliament. Its a long video, the first half is well worth watching:

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I hour in & Sugar tax at last! Fantastic Dr & easy to listen to... I'm doing half hours at a time

thanks for this informative & current video. :D

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Sugar tax! That's what we need (US). Also healthy hospital food! My hospital is great in so many ways but the food is horrendously unhealthy IMO. If the powers that be can't fix this then I have an interim solution. I sent the idea to the hospital CEO but never heard anything. If a patient wants to have their own healthy food choices brought in or delivered, then, with a doctor's order, have small refrigerator in a patient's room. They can be rented if the patient prefers. Then we have a way to bring our own food in. I often bring some of my own food with me, nuts, organic apples, etc. But I can't bring anything perishable as there is no place to store it, The ER is the worst. Often you are there overnight waiting for a bed and their stock meal is salty deli turkey (processed) on a white roll with commercial mayonnaise packets and juice. And a fruit cup with fructose. You can ask that a perishable food brought in be stored for you in the unit fridge but I don't want my food stored in a communal fridge in a nurses station. If your doctor gives permission I believe we have the right to choose our own healthy food and not be forced to eat hospital food that is filled with white flour, processing chemicals, sugar, etc. Last night and today I watched the video "Killing for Profit' mentioned recently on this site. Hospital food and it's problems were discussed by DrAseem Malhorta and other panel members. My diabetes has been well-controlled by diet for over 2 years but unless I bring in most of my own food choices when hospitalized even eating lightly and choosing the best foods on the menu my blood sugar begins to creep up then they want to give me insulin and it turns into a battle. So I started bringing my own. May sound radical but I don't want to be discharged with worse lab values that I arrived with. Even their cardiac, diabetic,etc diets don't meet my guidelines. Thanks for listening to my 'hospital food' diatribe.

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This is a great video. I listened to the entire video and also recorded it onto one of my youtube playlists-titled Helpful Videos. It took me last night and this morning to see the entire video but it was well worth it. I especially liked the quote by Dr Christian Barnard (an early pioneer cardiac surgeon here) who said.: (paraphrased). "I saved 150 lives with surgery but if I had used preventive nutritional methods I could have saved millions." Apparently his thoughts toward the end of his life. A very informative, powerful video. Thank you. irina

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Glad you enjoyed it as much as I did. It needs to be shared as much as possible to raise public awareness of what is going on.

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I have 2 visits next month-Endo and Electrophysiologist; both open-minded docs. Will bring prints to them.

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Excellent presentation. I have followed Lustig for years. Trouble is, I know all this stuff. I've been sugar free for a few years, but once menopause hit and my thyroid went off it all went out the window! I can't control the sugar and carb urges. I want desperately to eat less sugar and carb but I just can't seem to do it now. I feel fine at the moment and so I'm not going to eat a bar of chocolate any time soon. But if that huge mood swing hits this afternoon then I will be unable to control myself. My body is so desperate to get energy it drives my mind to distraction.

I have given myself insulin resistance, metabolic syndrome and I'm the heaviest I've ever been. If I looked it up I'd be morbidly obese now. It's so horribly depressing. When you are so physically tired that going for a walk is impossible I don't know how to get out of it. I used to be fit and very active.

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there is a case to be made for the drugs having some adverse effects if taken at too high a dose, but atm the NHS is playing a dangerous game with drugs. For example the t3 debacle. They couldn't make a good deal with providers so they stopped offering them to patients - many of whom will go on to develop illnesses and diseases caused by a shortage of this in their system. The NHS has a monopoly over providing this to customers in the UK, so why not cut a better deal or give the option of offering patients private prescriptions for it? No, they just cut everyone's supply off. As a result, it's a waste of time going to the GP for thyroid for many people, and they are just moving to alternatives eg. NDT. Similar story with other medications. I strongly recommend that you seek alternatives from other providers if you can afford it, or try plant based remedies (never worked for me but has for some)

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Criminal! Totally criminal!

What illnesses and diseases are caused by low T3? Or do you mean symptoms?

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As medical professionals in general seem to know so little about thyroid function and treatment of thyroid function problems, I doubt they or we have much idea about any resultant illnesses caused by long term inadequate treatment of Thyroid illnesses. As for myself I went two years in early 30’s with undiagnosed hypothyroidism, I was unbelievably ill with so many problems, ultimately treated with Levothyroxine, but went on to have coronary artery disease needing emergency bypass surgery at age 51, no family history, no blood preassure problems, no high cholesterol, normal weight and build, in fact nothing to indicate I would be a candidate for coronary artery disease, did undiagnosed/untreated under active thyroid play a part in this, who knows ? Years on I have tendon problems in shoulders and hands, again any link ? I do not feel good on just Levo, but no chance of T3 if I need it in my NHS region. Will be getting full bloods + vits done by Medichecks in a few weeks, so hopefully will have a better idea of what is going on. Can’t get bloods done yet as Levo dose recently lowered by GP.

My wife also has under active Thyroid and was over prescribed Levo for over a year and now has atrial fibrillation, according to cardiologist caused by over medication with Levo. At times it seems we are on a wing and a prayer when it comes to treatment for thyroid conditions in the UK.

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Hm, I started to get atrial fibrillation episodes before starting Levo. The cardiologist had no idea why. It's been much better (i.e. less episodes) since starting Levo. I suspect too little is as bad as too much in this instance. I'm not too sure I'd believe your wife's cardiologist without I investigated it myself. She needs to get private blood tests done to ensure she is on the right dosage and that her Free T4 and Free T3 are right before you lower doses based on a cardiologist's advice. The different specialties just don't seem to talk to each other or even consider each other most of the time. It's rare to get a meeting of medical minds as in the video above.

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My wife was on Levothyroxine for many years with no atrial fibrillation. Following annual nhs thyroid function blood test GP rang and said she was under medicated and left prescription to increase Levo. Over a year passed and she was getting symptoms of over medication, weight loss, agitated, feeling hot when it was cold and episodes of dizziness, and her pulse would race with the dizziness. Saw gp with symptoms, bloods done and low and behold she was over medicated with Levo. In fact her new GP said when her Levo was increase the blood test results looked as though she had stopped taking Levo, which she had not. Why on earth her GP at the time did not even discuss this with her before blindingly increasing Levo, we have no idea. Anyway dosage was adjusted to bloods that GP was happy with (we now know that doesn’t mean right for my wife), but dizziness with racing pulse episodes continued so referred to cardiologist, tests done, cardio memo for several days etc.. which showed paroxysmal episodes of AF. Cardiologist concluded this was likely caused by over medication of Levothyroxine for an extended period of time and told that it may settle down in time, once effect of reduced Levothyroxine corrected things. My wife was prescribed Bisopralol, and over time (four years) has been able to reduce the Bisopralol dosage to 1.25mg every other day. She did try stopping it completely with agreement from GP, but had a couple of what seemed minor episodes of AF over a five week period, so GP said she should restart taking the Bisopralol, which she has done. What is obvious to us is that reducing her Levothyroxine has overtime, lessened her episodes of AF, but she does have some adverse symptoms from the Bisopralol even on this low dosage, burning sensation in her legs at night (not as bad since taking every other day), and headaches and ocular migraines, none of which she had in the five weeks that she stopped taking the Bisopralol, butstarted up again about a week after retaking it. My wife would have liked cardio memo for 48 hours while Bisopralol was stopped, GP did write to request it with cardiology but was refused, cardiologist said she should continue with Bisopralol, which of course means she may be taking meds she doesn’t need but is fearful of stopping against medical advice without test to verify it. My wife’s original cardiologist has retired and seems to be getting more difficult to get specialist referrals in our nhs area. We did suggest paying private to GP but he says no point has would likely be same cardiologist anyway but just in clinic at local private hospital.

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She was also getting older and AF starts with a lot of women in later life. Other hormonal issues might play into that. I'm not saying that the Levo wasn't too high and didn't cause it. But it might not have been that. It's a pity she didn't ask for check-up blood test sooner when she began to feel ill.

It's a mine field. But we have to do as much for ourselves as we can along the way. I hope she continues to get better and can eventually stop the medication and be AF free. It's a hideous thing. Mine is so violent, when I get a spell of it, that I can't function. My Dad lives with it. I don't know how. It runs in his family.

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We have blindly trusted our doctors in the past, but no more. My wife also has hiatus hernia and was told she needed to take omeprazole, she then developed gord/gerd, so doctors kept increasing omeprazole and yes her gerd got worse until we took it into our own hands and stopped the omeprazole altogether and bingo the gerd stopped. Of course when you tell the doctor this it seems to fall on deaf ears.

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Oh yes, they love those proton pump inhibitors! I got given those in my 30's for acid reflux. I took them blindly for a while, got other symptoms. Stopped taking them and felt better, but needed to reduce my carbohydrate and sugar consumption to stop the acid reflux and take extra apple cider vinegar or hydrochloric acid for a while to help digestion. I don't take either anymore and my digestion is fine. I do drink goats milk kefir daily and that has sorted out gut issues for me. I too have a supposed hiatus hernia, but it's not an issue if you sort your diet out a bit and improve gut flora.

What they don't explain to you about PPI's is that they reduce your stomach acid, which stops you digesting food properly, which stops you getting the nutrients out of it so you loose vitamin and mineral levels. Particularly bad at reducing vital Vitamin B12!

I've got to the stage now where I go to the doctors now and then to tell them what I'm doing so that they can keep my notes up to date!

As a side thought, low magnesium levels can have a big impact on AF. Most of us are getting low now due to soil depletion. But if your wife (as I was) was on PPI's and lost her magnesium reserve that could well make AF worse. So as it's harmless, I'd really boost magnesium up. Mustn't take tablets of it within 4 hours of thyroid meds and best taken at night as it can calm you for sleep. But you can use magnesium oil to rub on the skin and bath in Epsom salt baths. I used the oil on arms and legs daily and took tablets at first because I had my levels tested and it was low and I had AF. Now I just top it up now and then. If the oil stings on skin, keep going, it soon stops. It's supposed to indicate you need it. Not sure if that is true or not.

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Both myself and my wife have under active thyroid and we do take some supplements including 200mg magnesium citrate daily, not sure if ok to increase that or if different version of magnesium is better. When my wife was prescribed omeprazole we were not told of implication with Levothyroxine nor were we aware of it, may will have been the cause of being under medicate resulting in Levo increase dosage by GP and when omeprazole stopped then being over medicated. I must admit that I despare when I ask GP about drug interactions, a lot of the time they just don’t know, and often in denial if I mention information gained from forums.

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Try magnesium oil on the skin and Epsom salts baths. Citrate is the cheapest form of magnesium I think and can give you an upset stomach. Make sure you don't swallow magnesium supplements or any multi vitamins with iron or magnesium in them within 4 hours of thyroid meds.

I didn't even think about the PPI and Levo interactions. But it stands to reason that if the PPI's stop you digesting properly, they will affect the absorption of Levo so you might be on to something there.

Doctors hate us mentioning the Internet. It's best to keep the words Internet and forums out of doctors offices.

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We keep supplements at least 4 hours away from Levo, will look into alternative magnesium, previously took Holland & Barrett Magnesium Oxide but seems that it is probably not best of quality so changed to citrate version. Regarding PPI’s I have read that they damage gut bacteria balance which can adversely affect immune system and even possibly lead to some cancers as a result. How true I don’t know but what I do know is that if the body chemical balance is out of kilter it can have serious consequences, unfortuanately GP’s and even endocrinologists don’t seem to be adequately trained to fully understand certain implications, not that we can even get to see an endocrinologist in our nhs area.

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You are right about the damage to the gut biome. The same goes for taking antibiotics. This is why I drink goats milk kefir every day. If you google for it you will find a lovely farm in Wales supplying it by mail order. And they have just gone over to free shipping! You can take a 21 day course 4 times a year, or if you like it as I do, just drink it every day.

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I've been under medicated for 2 years now due to GP and consultant not listening to me. I'm now on the waiting list for eye surgery, as I can barely keep my eyelids up. The ocular plastics consultant knows it's been caused by badly managed hypothyroid, so why didn't the endocrinologist do something about it? I'm going to cost the NHS a whole lot more now!

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How is ptosis caused by thyroid disease? Do you mean from a lot of weight gain and edema caused by under medication stretching out the eye lids? Ptosis can be genetic, due to age, or injury. Upper blepharoplasty (ptosis repair surgery) is a quite common surgery in elderly patients.

Why? Because some endos simply aren't educated in thyroid disease and thyroid management. Sad, but true.

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Yes, my eyelids and under my eyes became so swollen that the skin stretched, and that, together with ageing admittedly, has left me with very droopy lids, and I look as though I haven't slept for days. I've also got droopy jowls, nice!

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Hi Jackiez! Oh, I'm so sorry that happened. Is your vision impaired, too? I'm glad you're getting an upper plepharoplasty. If your vision is impaired, you'll be surprised how you'll be able to see much better instantaneously be surprised. They eye heals quickly and soon you'll be on to enjoying your new eyes.

:-)

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Thank you, my vision is impaired, it felt so good when the surgeon lifted everything to where it should be, and I could relax my eyebrows they are on constant lift up duty!

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That must be so exciting to know that soon your lids will be fixed and your brows with be relaxed from then on out. How soon is your surgery?

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Yes, it is exciting, but I'd rather it hadn't happened! I'm at the mercy of the NHS, so at the moment I don't know, I'm waiting to hear.

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That's interesting Heloise, so a low FT3 is just as risky to the heart as a high FT3.

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Hi Jackie, I think it appears that way. It's been disappointing that T3 is so ignored during treatment. If obesity also follows the lack of T3, it can have a devastating effect on the heart. Also disappointing is that the medical profession will not consider the research behind this. I always urge patients to consider using their own T3 as I do.

The wonderful summit "Broken Brain" pointed out that the heart, brain, and eyes have the most dense mitochondria which are the energy cells. Could that be why they need more T3? I'm not sure.

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I would say mostly ignorance. Many years ago though I remember a saying that doctors prescribe the last drug that came through the letter box! This was a general comment due to doctors being so busy and not time to read up on anything but the drug companies were peddling free samples. The doctors may well have thought how kind or this is new so must be better than the standard treatment, so bad habits came in.

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Here, generics take priority over name brands in many cases, due to the insurance company switching is out once they receive the script. Many doctors don't usually specify a brand, but in some cases they do. It can depend on the need for the drug, if name brand is best, or if the patent on a name brand drug has expired, and now their are generics available. It all just depends.

Sometimes if doctors do specify a certain brand, your insurance company will automatically change it to generic to save money if a generic drug is available. Surprise to the patient! This happened to me last year on a topical med. Generic was the same price as the last price I'd paid for name brand. I accidentally purchased the generic med, used it and didn't like it. I went back to the pharmacy and had them resubmit it to my insurance company. Insurance company approved it, but the then charged me TWICE what I had previously paid for the exact same brand.

So here, it's not all always about big pharma and big names. Insurance company rules in the end.

I've only been on generic T3 and T4. I do perfectly great on it. No side effects, like those I had on NDT. Switching to name brand would cost me more money, plus I can't imagine if I'm doing this well on generic (no side effects, I'm optimal, and I have no symptoms), that name brand would be of any benefit.

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I don’t get it - we are provided with a medical exemption certificate. How can they then refuse to prescribe the meds we need?

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I agree Aurealis. Makes you wonder why they even bother taking the Hippocratic Oath.

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They stopped the hyppocratic oath many years ago now. It's at least 26 years and it was some time before that my now deceased husband was fuming about it. He was an endocrinology lecturers in a university medical school and I worked with medical students in another medical school

but then my husband would have at least 4 hours of ltecture time but this is still undergraduate level and it was t about the medical side but more how it worked and how it could go wrong. The actual how to manage it etc was down to the clinicians. Compared to something like gall stones, heart attack or stroke for example then thyroid problems would be in the minority if looking at hospital admissions so we are already at the bottom of the pile. Plus who teaches the teachers? My husband was not a medic but a science based lecturer found active thyroid research so more up to date than many medics I've come across. But our lectures were not compulsory, whether that has changed I don't know and I suspect the universities aren't too bothered. After all it costs the same for a lecturer whether he addresses 200 students or 2. We changed the exam system so it contained questions in sections on every subject covered but you could still pass by missing a section completely so may be many aspects need tightening up if this hasn't been addressed. But doctor numbers are down so I can't see it ever being harder or more far reaching whilst that is the case.

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Thanks, I never knew they stopped taking it.

I think bottom of the pile is where we'll be for some time to come unfortunately.

And I take your point about Dr numbers being down. I think other conditions want to be seen as more palatable & easy to sell to entice new Dr's.

Government needs to be brave to change, make radical changes & best choices for patients when it comes to thyroid treatment instead of being a sheep, kowtowing to Big Pharma.

The world was once thought flat, till someone (bad memory today) challenged that notion, only to be carted off to France on the orders of Queen Elizabeth.

I read something similar in someone's post & it made me chuckle 😉

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I do think the GP's don't have enough knowledge about the thyroid, they are not taught enough about it at med school and alot of what they are taught is out of date.and I do think that some of it is purely down to the cost of some meds.

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Thyroid medication is very cheap there is an agenda not to treat. None of it is in patent it is very cheap therefore drug comapnys make not money from Doctors prescribing.

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Where I'm at, there is not an agenda not to treat thyroid. Doctors want to treat you if you have a thyroid disease. The problem comes in not being able to interpret the symptoms, followed by doctors running the wrong tests. Or, if they do run the right tests, they can't interpret the lab results correctly and make the connection with your symptoms, and often no matter where you fall in the range, "you're normal". Once you finally find a doctor to diagnose you, they are happy to treat you. Also changing to a new doctor, you are always still treated. There is none of this "taking you off meds" for all the wrong reasons like I've read here.

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Have you heard of the Broda Barnes foundation based in the states. Our famous & much loved Dr Peatfield spent time there. Half your battle is won if they want to treat you & refreshing to hear.

Meanwhile over the pond.......

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Hi Paula101, Yes, I've heard of it. So odd that the Broda Barnes Foundation claims to be dedicated to education, research and training in the field of thyroid and metabolic balance, yet they completely skirt the issue of autoimmunity in thyroid disease. So strange. Why bury heads in the sand from the obvious?

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If that is the case then it does seem odd, as to me I would regard it as part & parcel of thyroid disease.

Have you found that to be the case through reading his literature or attending seminars?

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Must admit no problem getting treated with Levo myself, but getting endo referral and T3 seems impossible in our area.

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I agree mandyjane that there is an agenda not to treat hypothyroidism but is it from ignorance on the gp behalf as they don't know any better and that's what was taught to them at med school or they just abide by guidelines that they are given or is there something more sinister here?is big farmer wanting to keep us unwell so we use more of their drugs? Whatever the reason I think it's scandalous the way we are treated.As you say t4 is very cheap but t3 is very expensive so almost impossible to get prescribed.

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T3 is actually quite cheap but UK will only purchase from one supplier that is over pricing as a result. Ithas gone up to buy privately now but I could get 6 months supply for £50 not long ago and a coupleof years ago itwas only about £2 for 30 tabs. There is more sinister stuff going on I am sure, it isnotjust in my opinion about money. I think that deeply manevelent people have bought into the phamacetical industry and we have hostile people both within these companys but in government and making decisons re nice guidlines. These people take a perverted joy in hurting others. Profit driven companys are not normally criminal unless some nasty people driving them.

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Three suppliers now - but no perceptible change in price.

When I first looked up the price of liothyronine, it was about £12 for 28 tablets of Tertroxin. That was a lot more than two years ago!

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Oh I managed to findsome for a couple of quid a couple of years ago not now though.I am struggling to get it at £20 for 28

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Sorry - might be at cross purposes - I was meaning UK prices for UK product.

Greek and Turkish prices are down around two pounds or lower.

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No thye dont take you off meds if you are lucky enough to get diagnosed even in Uk but they give you much less than you need which can be as bad and certainly does not relieve all the symtoms so leaves room for other drugs. Doctorsare not doing this deliberatly, they are as you say uneducated and also misled. Most doctors are trying to do thier best for patients but are over worked and do not have the time or encouragment to educate themselves on thyroid issues. American care for thyroid is a little bit better than uk but not good by any standard. Also if doctors were to give good treatment in UK and probably in America as well they would be seen as maveric and be vilified by establishment.

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Yes, I wonder the same. Obviously they don't have the same attitude to antidepressants, PPIs, and a number of other things.

I do wonder how, for example, diabetic people get on with the system. I hear there is a lot of ignorance there as well, for example doctors not understanding how to keep blood sugar low with diet, and giving dangerous advice on what to eat.

But not sure that's the same as the problem we have, which is more just denial that the illness exists, and a strange kind of hostility towards it.

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Thanks for the post Spareribs. It does seem strange to me that some medicines can be oversubscribed and others undersubscribed. GPs tend to follow advice from NICE and there will be cost constraints from the local CCG. I live in the Croydon area where Croydon CCG is currently (I believe) under special measures. I have a suspicion, but no concrete information that GPs may get “brownie points” (= extra funding) for prescribing some medications based on things like their Qrisk2 score for cardiovascular disease (risk over next 10 years). So I am plied with blood pressure and statins and have a lower target than the average population for cholesterol.

Thyroid doesn’t seem to have the same emphasis, possibly because of the low percentage of males diagnosed. I’d be interested in a survey of all the population, including healthy individuals to see if high or low thyroid is often undiagnosed, as I suspect it is. There must be something in the Biobank data about that!

My low thyroid was picked up by a newly qualified Dr, or her mentor, when they suspected T2 Diabetes and added the thyroid to the tests. However I bounced along on the high TSH border for 5 years before a recent increase in Levo followed by an 8 week retest. Knowing the name of the Dr who suggested the retest, not one I’d seen since diagnosis, implies that there is at least some hope of an understanding GP at my GP practise.

The retest was almost below the TSH minimum and thus Dr was concerned that I was now over medicated and asked about racing heartbeat and other signs of hypo rather than hyper. So he took my pulse and was surprised (as was I) to find it was 54 bpm. Happy patient and I assume Dr too!

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There is no advice from NICE in the sense of formal NICE guidance.

(The NICE website hosts Clinical Knowledge Summaries - which have simply arrived there from the NHS website.)

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Thanks for your comment helvella. I should have restricted myself to thyroid related issues. There are guidelines from NICE for diabetes and Hyoertension. However, you are right - I can’t find any NICE guidlines for either hyper or hypo thyroidism....

Diabetes and hypertension guidelines from NICE follow

nice.org.uk/Guidance/NG28

guidelines.co.uk/NICE/Hyper...

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However keep your fingers crossed for November 2019!

nice.org.uk/guidance/indeve...

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This is interesting: In the UK, population 65.1 million, Levothyroxine is the #3 and #4 most prescribed medication on two lists I found, dated 2010 and 2011. I had difficulty finding more recent lists for the UK. In the US, population 327.5 million, Levothyroxine is either the #1 or the #2 most commonly prescribed drug. Perhaps someone from the UK is aware of other statistics and can find them easier than I can?

UK lists, 2010 and 2011, respectfully.

#3 most prescribed generic drugs: gponline.com/top-10-prescri...

#4 top prescriptions: theguardian.com/society/201...

US lists, 2014 and 2017, respectfully.

#1 in monthly prescriptions: medscape.com/viewarticle/82... (if link doesn't open, try going to a search engine and type "medscape 829246".

#2 most popular: businessinsider.com/common-...

census.gov/popclock/world/uk

census.gov/popclock/

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Those figures are about what I remember.

But I do worry about exactly what the figures mean! I think most of us would consider the important measure to be "patient years" at whatever dose (or equivalent). I am not sure if the figures measure that - or does the count go up if you have to take, say, 100 + 50 + 25 to make 175. (Whereas in the US you could just get one tablet of 175 micrograms.) And length of prescription - 28 days, three months, a year? I am pretty sure that at some point all these factors will have been considered but are they properly interpreted in the "headline" figures?

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I've also wondered how come Levo/Synthroid is the most prescribed drug (poss after painkillers) yet doctors don't seem to be able to deal with dosing correctly.

Even the rubbish BMJ reviewer (& member of the NICE review committee) in Diogenes's recent post reckons 5% are subclinical (inc hyperT).

extract from ncl staff profile....

"Endocrine research: Subclinical thyroid diseases are common (affecting 5% of the population) and associated with a poor clinical outcome (an excess of morbidity and mortality) with both subclinical hyperthyroidism and subclinical hypothyroidism. These can be considered as states of ‘borderline’ thyroid underactivity or overactivity."

sub-clinical & borderline have a poor clinical outcome - er 'cos they're not treated!

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Can doctors deal with dosing of any medicine correctly?

So many medicines have very broad ranges of dosing - any over- or under-dosing by 50% or more might have very little impact except at the extremes. It isn't that they get them right so much as so little precision is actually needed it is almost hard to get them wrong!

There are few medicines which require the precision of dosing that thyroid hormones do. Doctors simply do not have sufficient experience of these fine tolerances.

The Wiki article identifies narrow therapeutic index substances including digoxin, warfarin, lithium carbonate. But the tendency is to consider the range between effective and dangerous/lethal. With thyroid hormone we often see changes of less than 5% flipping between effective and ineffective or causing unpleasant effects.

I really do not know of anything else that can be quite so important to get the dose spot on - permanently. (At least with insulin, there is feedback from self-testing.) There could be some, and they are probably more likely in highly specialised areas.

en.wikipedia.org/wiki/Thera...

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Yes, it's indeed tricky.... & Thyroid blood tests are only recommended annually!

(Dad went weekly for digoxin & wafarin - avoid grapefruit!)

My point was Doctors give the minimal dose despite the body's own loopy TSH level which they are told is such an exquisite test (flawed as we know).

And Rod - I think it was you posted about Thyroid and heart disease recently - it's Under not Over-medication that's the worry....

healthunlocked.com/thyroidu...

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Annual testing is, in my view, a real issue.

The idea that one measurement in 365 days is taken to be representative of the other 364 is at best sloppy. Differences by time of day, time of year, and other factors make a test on any one day likely to be significantly different to a test on another day - especially if you happen to take one test on a day which is towards one extreme.

The one possible saving grace - that patients themselves might well notice and raise a flag - is undermined by the simple fact that we seem positively discouraged from asking for another test on the basis of feeling under- or over-dosed.

Yes - under-dosing and failing to treat "subclinical" hypothyroidism is a massive issue.

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How they count it could well be significant. On my prescription I used to have Levo 25 and Levo 50 as separate prescriptions. Now it is 100 it is just one (obviously!)

Oh and as I’ve posted elsewhere on this forum, they are starting on Thyroid Guidelines - due out in November 2019. This was the first meeting

nice.org.uk/guidance/indeve...

Guidelines bring consistency if applied with rigour, however this may mean “one dose fits all for that combination of blood test results” and as we all know, we are all different. In this case we need evidence based dosage - evidence if how you as an individual respond. It is a learning process for us and for Drs.

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depends who's on the NICE committee.....

healthunlocked.com/thyroidu...

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Thanks Spareribs. I hadn’t seen diogenes’ post on their rejected paper. If that “expert” is on the NICE committee, I hope their rather negative views are balanced by more positive experts on the committee. Refusing to diagnise until TSH hits 10 would put them at odds with the rest of the world wide expert opinion.....

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I had a look on a couple if US sites to see what they said. Unusually they measure TSH with the same units as we do.

verywell.com/tsh-thyroid-st...

Some US physicians have been arguing for an upper limit if 3 for diagnosis if hypothyroid. However the labs there still use 4.5 or 5, their previous limit. The logic for a lower limit is as follows, quoted from the above link.

Doctors Wartofsky and Dickey defended the shift to the new range, saying:

We will probably never have an absolutely cutoff value for TSH distinguishing normal from abnormal, but recognition that the mean of normal TSH values is only between 1.18 and 1.4 mU/l and that more than 95% of the normal population will have a TSH level less than 2.5 mU/l clearly imply that anyone with a higher value should be carefully assessed for early thyroid failure.

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Another problem is we present many varied problems like depression. I can remember a while back waveylines argument for continuing of T3 when told it's too expensive then the medication for her' omplaints was costing even more and she wasn't even well on it. Doctors can't take on board the diversity of variation. It to me it's always sounded plausablecthatvit every cell in our body needs T3 and our reading it low that it can manifest itself as something struggling in any part of our body. So out brain fog is down to low medication in our brain etc. A poll may be interesting to say where our most pressing area of concern is! That's got to be better than the attitude of it can't that it must be this syndrome!

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My thoughts are continuity and waste. If you have six months supply of free meds some people will waste them and store them incorrectly. I personally am partial to fresher items and might be inclined to throw out old meds when I get newer ones.

There’s also control. We have to go to our Gp for free medication, so we are being controlled.

When I was clearing out my deceased parent’s house the excess medicine was almost mounted up. I still have nourishing drinks that expire end of this year. It’s hard to see things go to waste but returning to the pharmacy would result in distraction. If love to donate it to a third world country but this is not allowed. I’ve given what I can away but the illnesses she had - only 50% (pain killers and patches) i am able todo that with. The rest is quite specific. And before anyone judges. I fought to have the most of it reduced. Her Gp had the final say.

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