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Thyroid UK
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Accidental idle musings about this Cinderalla service

Whilst looking for something else, I came across a Dr at Coventry & Warwick hospital who has the position of "Diabetes Listener and Associate Professor in Social & Behavioral Sciences". Amongst other things, she researches and teaches diabetes self-management education and emotional and psychological care in diabetes, particularly focused in primary care. She is also involved in the Warwick Diabetes Research and Education User Group, a group of people with diabetes who support Warwick Medical School to develop education and research programmes that are important to people with diabetes.

She is also directly involved in clinical work as a Diabetes Listener, her role being to support people who are struggling with their diabetes and its impact on their life. So my question is, given how we are routinely considered to be variously mad, whinging, neurotic, health-obsessed, depressed, and never satisfied with how we feel; and therefore in need, one might think, of the same sort of psychological support whilst we struggle with our thyroid disorders and their impact on our lives, why Cov & Warwick Trust, or any other, hasn't also appointed a Thyroid Listener at Professor level. And why aren't there education and research programmes being developed with us, that are important to people with thyroid disorders. Or maybe there is .... but I doubt it. In which case, why are we never allowed to go to the ball nor get to try on the glass slipper?

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Very good question. Especially as there are a hell of a lot more hypos around - I read somewhere - than people with diabetes!

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Are there, greygoose? Then I'm even more annoyed now! :-)

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Yes, but, thinking about it, perhaps not.

I've just been searching for the article, but I can't find it. I think I read it on GreenMedInfo on facebook, but if that was the case, it's probably not true, anyway. Their intentions are good, but they do post a lot of s****y articles, that are hard to believe. Especially about thyroid. The one I read today said that all you have to do to reverse Hashi's is take selenium! Hooray! Why didn't I think about that! Only, I did. I took it for ages, ate tons of Brazil nuts. Didn't do a thing for my Hashi's! And, all the people on here that take selenium? How many of them post joyously to say their Hashi's has gone…

Anyway, you get the picture. lol

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Glad I'm non autoimmune then, as I haven't eaten a Brazil nut in ages 😉

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Don't you like them? I love them, so no hardship. But no gain, either! However, it's not just about being autoimmune. Selenium has a very important role to play in all things hypo. It is necessary for good conversion, for one thing.

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I have also read that Selenium is good at removing toxins. Now where did I read that ? 😊

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It's not easy, is it, to keep track of where we read what. If it's in a book, we can under-line passages, and put post-it stickers, but what do you do when you read on-line? I've never found a solution to that. :(

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I copy things into a Word document on the computer. And end up with so many I can't find it either! :-D

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Don't feel like the Lone Ranger. I do that too.

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Lol, it's like clearing out a cupboard full of bits and pieces, chaotic and can't find anything. You think you don't have any spare washing up liquid or something, buy some more, then find 6 bottles at the back!

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I don't know about that Marz, but I have read "Selenium is an element necessary for normal cellular function, but it can have toxic effects at high doses. We investigated an outbreak of acute selenium poisoning". Acute Selenium Toxicity Associated With a Dietary Supplement MacFarquehar et al.

Edited: a quick google came up with "Selenium acts as a mercury magnet with a very strong binding affinity for the toxic substance. This strong attraction allows selenium to mix and neutralize their reaction characteristics. This new Hg – Se substance that is produced is not absorbed by the body and gets flushed out of the system". Well remembered Marz.

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My GP here in Crete suggested Selenium to me when I was diagnosed with Hashi's. She was keen to point out that taking time out from time to time was good to prevent toxicity.

Think Selenium was mentioned as one of the ingredients to help remove toxins in the body from vaccines in the recent on-line summit ... it was information overload so will check ... 😊

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Thank you - yes it was mercury as it was from the Vaccines Revealed on-line Summit - as mentiined above before your memory jogger !!

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Oh yes, I do like nuts, and understand the wider hypo connection; was just responding to the "crunch a nut:cure Hashimoto's" promise. :-)

As a 16 yr old, I worked on the Pick & Mix in Woolworths, which of course had both sweets and nuts, and it was there I developed my lifelong taste for cashews, because up till then, my family bought nuts only at Christmas time and they were the more usual walnuts, brazils, & cob nuts.

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Oh, same here! One of my mother's favourite expressions of dissatisfaction was: roll on Christmas and let's have some nuts! lol She was nutty about nuts.

And, I worked in Woolworths as a Saturday and holiday job, but I was on the cup and saucer counter, so not able to pinch the nuts. I've always found cashews a bit too soft, for my liking. Brazils were always my favourite. But, got Hashi's anyway! I don't know where these people get their ideas from!

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I love the sound of your Mother!

Oh no, sorry you drew the Woollies short straw. I went there because I failed the "if you add seven shillings and eleven pence to nine shillings and eleven pence, how much change would you give from a five pound note" type of questions at my British Home Stores interview. :-)

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Don't think I had an interview for Woollies. I saw an ad in the paper for Saturday girls, strolled in and asked about it, and was told I could start next Saturday. But, in any case, I was pretty hot on the old LSD in those days - doubt if I could do it now! lol I was only interested in the money, anyway, and would have done any job to get it.

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No wonder we are in a state, as it is evidently not in the ground where it should be. I also worked in Woolies, part time after my day job. It was at Orford circus store and I remember selling an expensive razor for the price of a cheap one. Only realised after it was too late. Was on make-up as well. Only for a few weeks in the run-up to Christmas 1961.

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Same with magnesium. Man has completely drained the soil of nutrients.

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I'm pretty sure thyroid replacement is the most prescribed thing in the UK, and 2nd in the US after antidepressants. Which suggests it most be one of the biggest patient groups.

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Just checked the 2017 figures SilverAvocado, and you're not far off. Atorvostatin was top of the pops at 37.3 million, with Levo coming second with 31.5 million, and Omeprazole in third place with 31.1 million. Then Metformin with 21.2 million, is down in twelfth place, as greygoose indicated.

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OK! And who has high cholesterol and low stomach acid? Hypos! So, even if they're not diagnosed they are contributing to those figures.

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Last time my GP commented on my high cholesterol I pointed out that when I was hyper and my TSH was low my cholesterol was the lowest I’ve ever seen it, now that I’m no longer hyper and my TSH has crept up my cholesterol has crept up too. I said there had to be a correlation and she agreed with my observations.

However, as I’m always saying there is no such thing as fine tuning with the NHS so to my mind they would rather prescribe statins to lower my cholesterol than tweak my thyroid.

Well they would rather provide anything than listen to then fine tune a patient’s thyroid - statins, antidepressants, omeprazol that’s just for starters.

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My understanding from my doctor(now retired) was that before blood tests were used to diagnose hypothyroid it was alerted by high cholesterol that could not be managed.

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That's right.

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Oh, absolutely. But, then, they get financial incentives for prescribing things like statins and antidepressants. They get nothing for levo!

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Just as a caveat, not all type 2 diabetics are on metformin, most used to started out on that in general, but with newer meds available (depending where you live and how willing your GP is) it is not always prescribed first line and many will come off it as they require different meds when their diabetes progresses.

There are currently over 4mio people in the UK living with diabetes which is around 6% (1 in 16 people), where as the incidence of thyroid disease (Thyroid UK data) is 1-2% or around 1-2 people per 100.

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There were just under 2 million in UK with thyroid disease 2001. That number is likely increased

Number in Uk on Levothyroxine

bmcpublichealth.biomedcentr...

From the above data, one can estimate that slightly over 3% of the population of England were prescribed regular levothyroxine during 2007[2]. This is corroborated by a prevalence rate for hypothyroidism of 3.01% in Tayside, Scotland during 2001[3].

Population of UK 65.64million in 2016 - 3.01% is just under 2 million people

In a recent parliamentary debate, it was mentioned in passing that likely almost another 2 million are undiagnosed.

I can't find the link at moment, but seems reasonable assumption, especially when considering many with CFS or fibromyalgia are undiagnosed hypo

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Pretty bad in the U.S., too. "More than 12 percent of the U.S. population will develop a thyroid condition during their lifetime. An estimated 20 million Americans have some form of thyroid disease. Up to 60 percent of those with thyroid disease are unaware of their condition." thyroid.org/media-main/pres...

And I suspect the U.S. numbers are closer to accurate, considering that U.S. doctors are not told they have to wait until TSH is >10 to start treating.

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The presentation of the league table numbers was simply in response to SilverAvocado's comment about most-prescribed drugs, with no inference that there aren't other drugs or other conditions that impact on the complete picture.

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no worries! 😜

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Sounds like Top of the Pops MaisieGray, or more like Top of the Poisons.

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Oh yes. I am waiting for the posters. 'Have you been checked for thyroid disease? Ask you GP to do so, it is more common than you think.'

Or even a few leaflets and maybe one day, one day a doctor might even offer to check for thyroid disease and not have to be explicitly asked too or argued into it by the patient.

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It would be even better if having identified it they had better treatment plans!

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I read somewhere ?? - that diabetics should be tested for thyroid issues as both are endocrine. But if only the TSH is tested many will be missed ...

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This is correct, there is a link between thyroid issues and blood glucose. If you are undertreated for hypothyroidism, this can raise blood glucose levels (and also cholesterol).

There is also a higher incidence of thyroid disease in people with diabetes compared to the normal population, TPO positive antibodies can be found in as much as 38% of the diabetic population, so yes, they should be tested regularly - and as you said not just the TSH!

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It concerns me that I see so many people with Type 2 - in an older population - who say they do not have a thyroid problem - umm :-(

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If I remember correctly Broda Barnes put all of his diabetic patients on thyroid hormone and apparently none of them developed the usual diabetic complications. Something to think about.

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Absolutely. Didn't know that so thanks for the tip. 😊

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My Mum most definitely was Hypo, but believed her GP when she was told it was only borderline, and Type 2 Diabetes started. I only wish I knew then what I know now!

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My Mum too. She was never diagnosed with thyroid. Sad for us both - and no doubt there are thousands more ..

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Yes,my endocrinologist has clinics for both thyroid problems and diabetes on the same day at our hospital.

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Someone once passed through the forum who was knowledgeable about thyroid, and said that in their opinion everyone who was hypo would eventually develop diabetes.

Seemed a bit of an extreme view, but I'm sure there is some truth to it.

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That seems unlikely. We might have to work harder with low sugar diet

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I would say there is something to that, people who are hypothyroid have increased glucose levels and even with diet and exercise they will find it difficult to get them down, so if the hypothyroidism is not corrected properly, then they may even be pushed into the diabetic range - even more so if they gain weight as a result of being hypo or find it difficult to lose weight.

But once the hypothyroidism is corrected, the incidence should be similar - unless the damage has already been done.

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Thanks for your comment, it's very good to hear from someone who is knowledgeable about diabetes, because I'm sure there are lots of interesting comparisons with thyroid illness.

For some people the weight falls off quickly when the thyroid dose is optimal, but it's one of those symptoms that sticks around for some people :(

We also sometimes get low blood sugar as well, reactive hypoglycemia. Do you know if that kind of thing has any relation to diabetes?

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Reactive hypoglycemia can happen in people without diabetes, usually occurs within 4h after eating a meal. The actual cause of it is still not entirely clear, but may relate to the food that was eaten or the timing and also how long it has been since the last meal.

If I was to speculate, I would think that if people who are hypothyroid (or not adequately treated) may find it more difficult to deal with the glucose in the meal (hence the increase in blood glucose you often see in undermedicated people). After a meal, it may take a while for the metabolism to kick in and once it is kicked in, it may perhaps also take a while to get shut down again - and may be then switched on longer than needed and overcompensate. If that happens you may feel that you are feeling ‘hypo’ as in low sugar, without medically qualifying for a low blood glucose.

But as I said, that is just speculation - but it would actually explain nicely why you would experience this.

Would also be interesting to see if people who are optimally treated with thyroid replacement therapies would still get this? I would dare and speculate probably not 😜

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I would strongly guess not. For me it used to happen a lot when I was very undermedicated, but now hasn't happened for a year or more.

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For me, the weight did not start to drop (in spite of being on a low-carb diet, going to the gym 3 days a week, and bowling on another 2 days) until the doctor finally prescribed T3 at my urging. Now to just hope she doesn't withdraw it.

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Yes, this is true. It might be that people who think they are well medicated still need a bit more.

I've got my fingers crossed it will happen for me! I was dropping about a pound a month for some time, and recently it stopped. After an injury I'd got in the habit of making a huge pot of bolognese on Friday to last me the week. Turns out that's not conducive to any one losing weight ;)

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There's a 2014 paper - The hypoglycemic side of hypothyroidism - in which the authors state that hypothyroidism leads to the development of hypoglycemia due to the numerous abnormalities that come with the former. They included low cortisol and growth hormone responses which prolong recovery from hypoglycemia; impairment in the processes of gluconeogenesis, or the creation of glucose and glycogenolysis, or the breakdown of glycogen to glucose; adrenal insufficiency which worsens hypoglycemia; reduced glucagon secretion and impaired glucagon effect on hepatocytes, resulting in slower insulin clearance; slow gastric emptying which delays glucose absorption in the intestines. So it does seem to give credence to that view.

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Thanks MaisieGray! Alarming to see how many mechanisms are disrupted.

Have looked up the things I hadn't heard of, and they all seem to happen in the liver, releasing glucose from store or creating it out of other things, reduction in the chemical messenger that tells it to do these things ( a TSH type of thing), and reduced sensitivity of the cells to the messenger.

These seem to be triggered by low insulin primarily, and also low glucose in the blood.

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It takes us back to the most basic of Janet and John reasoning doesn't it - optimise treatment for a dysfunctional thyroid and you'll likely save patients and the NHS budget a lot of grief!

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Yes, just like the list of medications we were looking at in another thread - several of the other most prescribed medications all things undermedicated hypothyroid people will need :(

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I should have said, I had read before about low cortisol being associated with not being able to get glucose out of storage and back into the blood supply.

This chimed very much with my own experience. I seem very dependant on exactly the food I am eating that day, if that makes any sense. I'll quickly feel terrible if I don't get my meal on time or it's not healthy food.

These mechanisms all seem to point towards the same kind of thing.

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Since I am properly medicated again, my scientific brain seeems to be on target again - lol. Seriously though - Thanks for that, very interesting. And it shows that there are many more facets to the undermedicated side of thyroid disease than HCPs are aware of - and it makes me dammed angry that in their ignorance they are actually harming patients. What about the hippocratic oath???.

If they can’t do the proper scientific research, then at least they should listento the patients. And how much money would the NHS actually save by treating the patients appropriately?

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That sounds rather unlikely SilverAvocado. There seemed little to suggest I would become diabetic as being hypo I was particularly careful about diet and lifestyle in a bid to halt galloping obesity. I was referred to an endocrinology unit at a local hospital who found my conditions to be down to rubbish genes. x

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Apologies, I didn't intend to suggest that everyone who is hypo will become diabetic, I was reporting the opinion of another person. Just that there are links between the two illnesses.

Definitely wouldn't be due to lack of care in the patient, but some of the biochemical changes hypothyroidism causes in the body. Hypothyroid patients have deficiencies in a several areas of managing glucose in the body.

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I’d like the ability to at least have a shot at putting my disease into remission with diet!! God knows why we ended up in the ‘unsexy’ bin at med school/research.

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As would I both the diabetes and the hypothyroidism. x

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Have you had a go with diet for the diabetes?

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Yes loueldhen I have tried diet for diabetes, strangely enough even that isn’t the easy answer for all types of diabetes. It does sound all so easy doesn’t it? It makes you wonder why anyone is diabetic as that is all it takes? If it did work for me I wouldn’t have been diabetic for so long and having to inject daily in addition to other problems. Thank you for your thoughtful suggestion. x

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I’ve changed my diet so much because of the hashis. Nothing’s a cure but it definitely helps.

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I do believe that many people with Hashimotos do well by cutting back on gluten. I am a low carb person although no one has yet come up with a diet that really makes a difference to those of us with undeveloped thyroid . x

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I visited Rumetology to rule out other things and when I arrived there was a beautiful display of knitted gloves to buy for their charity hanging on a garland with fairy lights. There was also a charity person stocking leaflets while I was there. The receptionist offered me a form to fill in, on the form was information about signing up to patient support newsletter, info on new treatments , support groups, counsillors and holistic help. I kept thinking how different this was from the Thyriod clinic next door.

As expected I wasted Rhumatology's time, he was surprised I wasnt even able to see Endicrine anymore especially when I had to show him private bloods when he saw my Antibodies levels. No wonder your experiencing pain due to your thyriod levels. He was really kind and had a really good patient rapor something I hadnt always felt at thyriod appointments.

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MaiseGray,

Because the world of thyroidism is so immensely complicated, influenced by multi factorial systems that may have become diminished, hardly any doctors understand it. 😂

My husband is diabetic and always feels sad I have to wait so long for well-being to return after a blip. He feels crap, tests his sugar levels, sorts it by eating carbs/having more insulin. Problem resolved between 2 -20 minutes.

We feel crap, adjust our dose, have to wait 6 weeks for retests and recovery when it just happens to happen.

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I do hope you are correct radd and that it is predominantly scientific complexity and not attitudes that is at the core of our problem; although perhaps in that case, they need to just accept that we might need the same consideration and service input even if they don't understand why. The other factors to your last sentence, is that we have to fight to be allowed a dose increase, are often refused it, and even have it wrongly reduced.

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MG,

I self-medicate.

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I am so pleased all your husbands diabetic problems are solved so quickly rad. I find I have much longer lasting problems. I am assured that it is diabetes and not hypothyroidism that has caused my retinopathy. I have never used insulin so that wouldn’t apply to myself anyway. I have been hypo for 55 years and diabetic for just over ten. I found getting diabetic medication to correct level took years, it really isn’t easier than thyroid issues. Certainly I have never come across any amazing settings as stated above. I wish I could have the magic that will but my diabetes into remission. x

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Miffie,

I am so sorry to hear about your problems.

My husband has faired better than me as although been an insulin dependant diabetic for 55 years, has managed to keep well controlled sugar levels most of his life. I put it down to my imposed healthy diet & life style ... 😉. Only illness such as colds and excessive exercise/stress play havoc with his sugar levels.

Retinopathy is caused by high blood sugar levels damaging the back of the eye (retina). It is extremely common in people with long term high blood sugar levels. My husband has always said being insulin dependent since a child has been a blessing as he has never known anything else and was forced to apply more focus to the situation, and it is harder to cheat than with diet alone. He has always kept up-to-date with the latest/newest testings & insulins and the endos can never believe his steady HbA1c results.

His success has made my initial failure at accepting and medicating thyroid meds seem incompetent. Hence I became an obsessive Hashimoto investigator and have thankfully managed quite a good recovery.

Blood sugar issues are huge in people with low thyroid hormone. I had my own small taste of it before being optimally medicated with thyroid hormone replacement. Luckily it has since reversed with a diet for repairing adrenal insufficiency. I still never allow myself to get too hungry and eat protein, carbs & fats with every meal.

We are led to believe that the National Health Service will look after us but unless we look outside the box and challenge results that just don't feel right, it can be a long road to recovery, if ever.

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Thank you for that full response radd. I have come across the many links to blood sugar and retinopathy. Obviously not being insulin dependent must mean I have cheated on my diet. Even though it has never seemed that way. I never once went over 300 calories a day for years. Fish, lean meat, salads, vegetables and some fruit, no wonder I gained weight The Endocrinology Unit at my local hospital assured me that my problems all come from having rubbish genes. Now obviously people in a family with a history of problems should take extra care to ensure they do everything possible to avoid developing problems. Well I didn’t, it is tricky when adopted at birth and on further investigation finding your birth mother refuses any contact.

My Diabetic Consultant is always pleased with my control now. I don’t check out new meds however, just take what has been found to work. No doubt people will challenge my low carb lifestyle but it works for me.

I have not been optimally medicated for hypothyroidism for many years now . I am so glad you are and good that you have managed to put conditions into remission.

I know only too well the problems within the NHS, things have changed in the last 70 years.

Thank you again for your response . x

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Miffie,

With regard to controlling blood sugar levels, your low carb diet is good but it is not just about the amount of calories you consume but the rapidity of sugar levels onset in your blood stream.

Your aim is to keep blood sugar levels within a certain range and constant. When we eat high sugar foods, these sugars will spike blood sugar levels in the blood (this is when the retinopathy risk occurs) but by eating with a little protein or fat, this will stabilise blood sugar levels by lengthening the digestion process.

ie ; eat apple with yogurt, grapes with cheese, etc. I also use Pulsin' protein snack bars for when I am out & about and caught out regarding food.

Optimising thyroid hormones will help with blood sugar issues. Cortisol (adrenal hormone) will compensate for mismanaged hypothyroidism but is also the hormone that brings low blood sugar back to normal conditions by telling the liver to make more glucose.

The trouble is after supporting a long term low thyroid hormone issue, cortisol levels become depleted themselves. Mix this in with insulin resistance (caused by years of sugar spikes) and diabetes gets diagnosed.

Some manage to reverse with diet and an understanding of how to avoid the blood sugar spikes.

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I seemto think that perhaps there are crossed wires between us radd. I appreciate you trying to educate me. I have however studied long and hard the implications of diet, lifestyle and medication on both my hypothyroidism and diabetes.

Yes I do know some people can put diabetes into remission with diet. I believe that after being diabetic for years I know what causes spikes in my blood. I appreciate you may not agree. Changing eatin* and lifestyle to put diabetes into remission has not worked for me. My Diabetic Consultant, the Endo unit at my hospital have both diagnosed my issues are down to rubbish genes. They believe that I have done everything possible to help myself. In case you are concerned about my awareness of food perhaps I should say I studied nutrition to degree level and so have, I think, a reasonable awareness of the food ground and how they affect the body.

Thank you again for the trouble you have gone to. x

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Miffie,

Well, never give up.

I wish you better. 🙂

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waiting for my diabetic eye test saw on th screen but did not register the millions who are diabetic and that 850,000 are undiagnosed.I am one of the many not on metformin and trying to control by diet.Although told my sugar will be all over the place once I start chemo

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Good luck with the treatment, Treepie.

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Thank you. As a glass half empty bloke I am having to reframe .

Stomach acid led to trying the low acid solutions so often recommended here to no effect .A 2cm ulcer did not respond to ppi and a second gastroscopy led to a more extensive investigation of biopsy which revealed an aggressive limphoma .The irony is the ppi keeps down the acid and I feel fairly fit at 73!

A lesson is to not assume the advice here fits all symptoms.

Thanks again .

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I'm so sorry to hear this, Treepie. And yes, sometimes we need to look deeper for the causes of our problems.

Wishing you a full and rapid recovery.

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Or get to marry the handsome prince? I'm 72, so maybe there's hope before I die?

I'd like to encourage you to send your post and question to Coventry and Warwick Hospital. I think part of their reply would be that lots of Government money is prioritised for Diabetes, Cancer and Heart disease, and Thyroid treatment is low priority because as all sensible doctors know, and as big Pharma would agree, Hypothyroidism is adequately cured by Levothyroxine. On top of that women are well known to complicated and difficult.

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I'm 73...and agree!

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Hypothyroidism is no more "cured" by levothyroxine than diabetes is cured by insulin. In both cases, the best we can hope for us "controlled."

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My endo is at coventry & warwick hospital, he is very good but unfortunately is now in a more teaching & managerial role and not taking on new patients. I have found him very good, he is my 3rd nhs endo, first 2 were dangerously stupid. The diabetes centre there is same as thyroid care. Tbh i just dont think any drs are interested in thyroid care, i gave talks for 2 years to final year med students and in all that time never met anyone interested in endocrinology, sad but true.

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I saw a Prof Endo there for a while, then one of his team, then had a run in with an obnoxious and terminally stupid nurse running the stop being fat group, or whatever it was called. The Prof was proud of his latest recearch findings, which were that if 1000 people ingest the same number of calories, some will gain weight, some will lose weight, and some will see their weight not change. Seriously .....

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Who funded that "enlightening" study I wonder...

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I don't know lol, although I've since searched several times to find it, or reference to, it online, without success. So it perhaps wasn't published, or it was only a small part of a much wider piece of work and I'm therefore missing key search words.

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The one and only endo I've seen (since being diagnosed 20 years ago by GP/blood tests at my request) sat there sniggering at me and raising her eyes to the ceiling as I tried to discuss T3, enduring symptoms despite 275micrograms of Levo per day, my fibromyalgia diagnosis, then laughed in my face!

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How awful, not to mention unprofessional! Did you make a formal complaint?

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I discussed it with my GP who just tutted. The problem is, I was feeling really ill at the time and just not strong enough to take them on.

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Yes, that's the proverbial double whammy, isn't it. Having an illness that requires good care and treatment, and being too ill to complain when what we actually get, isn't good. Decades ago I formally complained about an Endo who said that if it was my lot in life to drink only water, and eat only a single slice of dry bread each day, and still get fat, then so be it. The response was that I should move to a different Endo at a different hospital, with no comment about addressing the Endo's shortcomings - the proverbial patient-blaming.

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So much easier to blame us!

My GP has stopped prescribing me melatonin which I need to help me get some sleep - it costs the NHS £30.00 for my two packs of melatonin per month - for me to buy my own (hopefully genuine and safe) melatonin on line will cost me between £55 and £60. To get an appointment to discuss this with the GP I have to wait 27 days, so I'll be in a right mess by then. As a fibromyalgia sufferer, I 'manage' with just melatonin for sleep and Epsom salts hot baths for pain, because I have a sick husband to care for and an elderly father to keep an eye on, so I need to keep a clear head. Without sleep, I will be in a LOT more pain, I will be in a very low mood, bordering on depression, my tinnitus will go through the roof and I will not be able to function.

If they don't let me have more melatonin, I will need pain killers, antidepressants, omeprazole for my acid stomach, I won't be able to cook and shop for nutritious meals, I won't be able to care for myself, my husband or my dad, I'll need social services care, I'll be spaced out on medication, I'll have mobility problems, we will probably need in-hospital care as our health deteriorates due to not being able to manage...…… on and on it goes.

All to 'save' the GP practise £30.00 per month

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Re : Melatonin. Try Ebay. It isn't exactly cheap as chips, but it isn't very expensive.

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Thanks Humanbean, I tried Amazon but never thought to try Ebay. I've ordered some, not the same as the Circadin slow release that I've been using but it's worth a try and a lot cheaper than Circadin x

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Hi Maggie

Just came across your question re melatonin. I get mine from iherb it’s an American company. If you keep items to belowa certain amount I think it’s £14 you avoid custom charges. It’s very reasonable for all kinds of supplements

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Thanks Maro, much appreciated!

I did order some from Ebay but had to wait almost 3 weeks for delivery from America. This one is by Puritans Pride. I find that I have to take a bigger dose that I was taking of Circadin and of course, it takes a few days to get over the disruption of having medication withdrawn abruptly - it's been a bad few weeks!

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Your very welcome. Glad you managed to get some. The one I get from iherb is “Natrol” 3mg but like you experienced it takes a couple of weeks to arrive, anyhoo check it out and compare prices. Hope you’re feeling better now. Xx

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Sadly the concept of joined up thinking requires too much effort, cohesion and logic maggi999

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Just proves what we all already know MaisieGray!

I was struggling decades ago and requested a thyroid blood test, ....they tested T3 back then

"Hypothyroidism.....no problem....this little white pill is all you need to feel well" so said an arrogant, ill-informed GP of yore!

I'm only now discovering why that "little white pill" did not help and why I gradually became very ill.

It wasn't the medical profession that threw light on the problem (just the bucket diagnosis of Fibromyalgia and Chronic Fatigue) but the good folks on this forum. Frankly I think Lyn deserves a "gong" for creating TUK.

I have just seen an endo who by good luck seems very well informed...could hardly believe my ears... he tells me those original test results should have flagged up a problem! He hasn't said so but I think he is considering secondary hypo.

I fully anticipated that he would dismiss my concerns, and my personal research, as those of a neurotic old woman.....but no! He even said, "You thought I was going to dismiss your concerns ...don'r worry, I'm not" .

He is now closely investigating my medical history and hopefully will find the proverbial rabbit in the hat and yank it out by it's ears!

Meantime I'm just crossing my fingers and hoping that he really is that rare creature.....an endo who understands thyroid function.

I've spent about 40 years waiting for that invitation to the ball and with all here share your anger and frustration. Thanks for posting.

Meantime the question remains.....how long will it take for this debacle to penetrate the skulls of those with the clout to change things?

Where are those glass slippers?

Best...

DD

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If he's not on the Thyroid UK list....once you have verified that he's as good as first impressions .....please send details to Dionne

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I hope I'm not wrong ....will keep you posted.

I'm still in shock!!

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Blimey, can I move in next door to you so I can get referred to your endo!

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maggi999 You can be referred wherever in the country you want to, so long as the specialty you need is there of course; you aren't limited to seeing someone local to you.

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Great news. Fingers are crossed for you, DippyDame that you have found your Prince Charming and not another pumpkin.

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All too true. It's the general population, not just doctors too - especially (surprise, surprise) men. I had a change of dose and brand this week so had a complete melt-down day (as per normal). Apologising afterwards and explaining it was mostly because of the meds, it was all, "Don't worry, it's a stressful time." Now, don't get me wrong, they were trying to be supportive but COMPLETELY dismissed the meds as cause. One even said I didn't need to blame the meds!! Argh!!!

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I'm not excessively sensitive myself, to dose and brand changes, but recently waved the flag for these who are, by trying to put straight a new pharmacist at my local pharmacy who actually said his sole focus was to source the correct active ingredient to fulfill a prescription, because the brands and inactive incipients aren't an issue at all. He wasn't even aware that we are supposed to have a blood test following a change in either. So it's to be expected that the lay public can't grasp the subtleties of the disorder and its treatment, either, if the professionals don't. I think that if people are at least empathic to our plight, even if they don't 'get it', that's fine because I probably don't understand the complexities of their particular health conditions either.

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I read a study a while back which stated that taking statins can cause diabetes - is this why we are seeing more cases of diabetes?

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Well, that could well be, Also following govt dietary guidelines is probably going cause type 2 as you get older.

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Links saying Statins do increase risk of type 2 diabetes

nhs.uk/news/medication/bene...

medicalnewstoday.com/articl...

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.... and the brain needs cholesterol. So could blocking it be causing brain disorders as in the Dementia/Alzheimers epidemic. Also referred to as Diabetes 3 ...

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This is what my reflexologist says.

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Looking at 3,673 participants (26.8 percent women) from the Whitehall II study, researchers found that falling levels of HDL cholesterol were predictors of declining memory by age 60. Whitehall II, which began in 1985, is long-term health examination of more than 10,000 British civil servants working in London.

"Memory problems are key in the diagnosis of dementia," said Archana Singh-Manoux, Ph.D., lead author of the study and Senior Research Fellow with the French National Institute for Health and Medical Research (INSERM, France) and University College London. Their main findings were:

*At age 55, participants with low HDL cholesterol showed a 27 percent increased risk of memory loss when compared to those with high HDL.

*At age 60, participants with low HDL had a 53 percent increased risk of memory loss compared to the high HDL group.

*During the five years between phases 5 and 7, study members with decreasing HDL had a 61 percent increased risk of decline in their ability to remember words versus those with high HDL.

*Men and women did not differ significantly in the link between lipids and memory loss, so researchers combined data from both sexes for analysis.

*Total cholesterol and triglycerides did not show a link with memory decline.

*Using statin drugs to raise HDL and/or lower low-density lipoprotein (LDL or "bad" cholesterol) showed no association with memory loss.

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Interesting ! - thank you. My HDL is good /high ! I did read that the statin to raise HDL did not work and was a bit of a red herring. Probably read about it on Dr Kendricks Blog !

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I do know the Prof of Endocrinology at this hospital who heads up The whole Endo team. I saw him as a patient about my thyroid. He has a very similar manner.

Perhaps it’s department ethos encouraged by strong team players.

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Sounds like this person may be primarily a sociologist or psychologist, rather than a medical doctor. Or even something more unexpected like a statistician.

Before I got sick I was a social psychologist, and the job I was working at at the time I got ill was in a new department and something I'd never experienced before. It was closely associated with a clinical trials unit, embedded in a hospital. The department was very confusingly named, with lots of 'social' and 'health' in the title. Among other things they taught medical students Communication.

As someone who had always been embedded deeply in an academic department it was a bit of a surprise. Usually you have to beg and beg and wait and beg to get access to do research anywhere at all, and particularly inside hospitals. The trade-off was that people working in this setting were extremely uncritical of doctors :(

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She was a diabetic nurse, then a mental health nurse, then went down the academic route.

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There was probably a lot of jumping in that direction in the department I was in, I suppose. Academics go crazy about people from other areas moving into academia.

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Yes, I agree. For the most part of my first career I was also a visiting lecturer at a number of Universities; and whilst I was welcomed and acknowledged for my professional expertise, it was always clear that there was a divide between us, that I presumed wouldn't necessarily have been breached had I moved properly into their world. There was one Professor who had done that, and she was noticeably neither fish nor fowl.

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Just to add 2p, "Associate Professor" is a modern title, basically taken from the US, but doesn't really mean a Professor in the traditional UK "Chair" type - it's more of a senior lecturer post. But because it sounds more impressive, some institutions (particularly the newer ones) are adopting it to entice people, or to keep them on happy on lower grade/heavy admin/teaching roles some cynics would say...

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Yes, I don't think there is the same consistency in naming nowadays, as there was traditionally. In the 90's even Oxford introduced Titles of Distinction to recognise distinguished academics as Professors when they'd run out of endowed chairs. Others use Associate Professor instead of Reader, as well. In the medical setting though, it helps patients to distinguish those medics also involved in academic work and those who are "just" Drs; and practically, and reasonably, to expect them to have an enquiring mind rather than a simple acceptance of the mainstream thyroid credo.

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It seems like this varies quite a bit by field. I was going to mention that I'd also worked in an Education department, and there was a lot of movement from teacher to academic, and then of course those people are training new teachers, and collaborating with teachers or running interventions in schools. I get the impression health-type fields are similar, or even more so. It seems common to have a foot in both camps.

Whereas I've also hung around in philosophy departments. No one can be a philosophy academic except someone with a degree in philosophy who has followed the philosophy path all the way. Some of my colleagues had dedicated their life to and done substantial work on specific philosophers, but they could never get a job in a philosophy department because they had also studied or worked in literature, geography, or whatever other thing.

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You're absolutely right Maisie and considering one in five women will at some point develop a thyroid condition it's nothing short of discriminatory. I go to UHCW, like every other hospital they give diabetes preference. I think a lot more is understood about it and it's heavily on the increase, drug companies probably fund research too. Perhaps we should write to UHCW and enquire about a similar service for thyroid patients. I won't hold my breath though, they barely manage to produce my prescriptions correctly!

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Yes I was thinking the same thing, at least it would be 'interesting' to read their response.

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Maybe you should write to the doctor in question. She may give a more interesting response, and if she takes an interest it could be very useful.

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Simple, thyroid problems affect a lot less men than diabetes does

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I was put on Levothyroxine 25 years ago I was doing okay for many years but a round about 2011 was not well but could not put what was going on with me Drs I was than with just gave me antidepressant for years telling me my thyroid test I had was all right so in 2014 I was told on the phone

that the thyroid was ok as usual but this time as I had found out I could have a print out I asked them for one and when they gave it to me they still said it was Normal as they had always been saying but when I opened it up I found out it was not normal the TSH was very high.

When I left them Drs. I went into it and found out that my thyroid tests were high and not been alright for some time. I am not on antidepressants now I was in hospital in 2014 having just left them Drs. I was asked if I was

depressed I said no I was asked why had my Doctor given me anticipation tables why indeed so I was told to come off them I thank them for that I had been telling my GP. that I did not want to take them for a long time

but he did not want to know and so I asked him if he could let me see an Endocrinologist he said no I said why because it would cost to much and it would be a waste of time.

So I am with new Doctors now from 2015 not on antidepressants I am CFS from 2014 and can’t get any more tired then I am now I hope all so I feel like I have flu in a lot of pain every where getting worse my headaches are getting very very bad have been for some time now and my jaw and face every day it goes on for hours I don’t know how much longer I can put up with the headache pain is worse than it was, I put it down to my thyroid I still not got it okay. These GPS when I have blood tests done I think

they don’t know what to do it seems or have they got their hands tried? When I have my thyroid test done with blue horizon I get a Doctors comment I have been told by them it needs looking at and the platelets etc. I have shone theses uGPS.The blue horizons results told them they can keep them if they want to but they don’t know even want to read or anything I told them they can put them in to my records. They then just say they get me to have blood tests done for me. When I have seen some of these GPS I have been told don’t come with here with your symptoms. When I was in bed and one of them came out to see me I said I am so tired and he said he’s not even going there. I don’t think me with the thyroid problems is going to get well I feel to tried and in to much pain I can’t help myself I am just not getting any where. I have been trying to get someone to help me with the thyroid I have needed to know where a good thyroid endocrinologist that is a specialist 1st of all in the thyroid. I have been trying to do something for my self about the thyroid had so many blood test done the levels not good enough and so is that I have still got thyroid problems symptoms.That I have GPS. say to me don’t come with your symptoms one when he came to see me at home and he ment it our dair he. So when I go to see the Doctor now I don’t know what what symptoms he wood let me tell him. I think my hands are tied too. I got no where.

Sorry this as been so long

All the best to you all thank you

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Fedup5 I'd suggest you copy and paste this post into a new thread of your own, together with your latest blood tests and their ranges, and that will ensure more people see it, to offer suggestions to you about improving things and moving forward.

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