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Don't self medicate

Hi, there's a lot of information for us now, which I think can be dangerous. When my poor mum suffered very badly with an underactive thyroid we studied the condition and thought we knew better than Drs. She was on armour thyroid and felt better on higher than her prescribed dose. We thought we'd ignore blood tests and go by how she felt. Her Specialist knew this, but warned her that it could be dangerous. Unfortunately she developed arrhythmia, which was not diagnosed as mum put it down to palpitations due to thyroid. However, she suffered a sudden fatal cardiac arrest and couldn't be revived although she was in hospital. Since she passed away 11 years ago I've developed an underactive thyroid and I'm on 50mcg levothyroxine. My GP does regular blood tests and I'm not ever going to self medicate with anything - information can be dangerous as some symptoms may not be thyroid related and we must understand the dangers of thinking we can do better than Drs. Just advising that it can be very dangerous to mess with thyroid medication and it should be left to a Dr to help if you're not well. A little knowledge in the wrong hands can be dangerous - I think my mum would be here today if she'd just taken her prescribed dose, even though she didn't feel 100% it's better to be safe

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I totally agree with you although many on here won't !

I don't self medicate but I am on a slightly higher dose of Levo than my GP is happy with, TSH slightly below her comfort zone, anyway I've had ectopic beats for many years, always dismissed by GP and Cardios however I've recently had a blood test which detects heart problems and particularly heart failure, it came back high so I'm now wondering if my "slight overdosing" has caused it.

The general consensus on the forum is that the osteoporosis and heart problems link with thyroid meds is rubbish and I know studies have been done but maybe for some people it can be an issue.

I would advise people with any sort of heart issue going on to ask for an

Se N-term pro BNP test.

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Unfortunately, many of us with thyroid conditions find that leaving it “to a doctor to help if you’re not well” doesn’t work. I’d love to find one of those doctors...

In the UK, it seems that many doctors simply don’t have a clue about how to treat thyroid conditions and are completely oblivious to the knock on effects to gut absorption etc.

Here, we tend not to advise to “ignore blood tests” - that would be very dangerous, I agree.

I am very sorry about your Mum.

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I'm sorry to hear about your mother.

I have a few comments...

1) Heart damage can be caused by having too little thyroid hormone as well as too much. If your mother had hypothyroidism for several years before treatment began (which is very common) and was then under-treated for a few more years then heart damage could already have occurred before she ever started taking higher doses of Armour than her doctor was happy with.

2) A common issue with thyroid treatment is that it doesn't always give people enough T3, which is the active thyroid hormone that every cell in the body, including the heart, requires. Doctors look at TSH (a pituitary hormone), sometimes check Free T4 (the inactive thyroid hormone), and hardly ever test Free T3. If your mother's results were such that her TSH was considered "acceptable" by her doctor, this doesn't necessarily mean that her Free t4 and Free T3 were optimal or even "acceptable". And it may be that she would have done better with T3 added to her Armour.

2) Nutrient deficiencies are very common in hypothyroid people. Low iron, for example, can cause arrhythmia, chest pain, and tachycardia (fast heart rate). Low B12 can also bring on a heart attack. I'm sure there must be other deficiencies that can increase the risk of heart attack.

3) Hypothyroidism is a chronic illness that leaves many people with a very poor quality of life. Doctors, on the other hand, often think it is a minor problem, and they simply don't grasp how bad it makes people feel. I have a lower than desirable TSH (by my doctor's standards, not mine), but I aim to maximise my quality of life, rather than my quantity of life. Perhaps your mother was doing the same? I don't know how long she was on treatment that was considered "too much", but while she was and her quality of life was more bearable, that may have been what she was aiming for.

4) My mother was a doctor's dream patient. She was hypothyroid for 30+ years, but never complained, and took the dose of levo prescribed. Her dose was never changed and I think she was under-medicated the entire 30+ years. She developed absolutely appalling osteoporosis which was so bad that no hip replacements were possible because her bones were too crumbly. During the last 15 years or so of her life she lived with spinal fractures which were treated with pain relief and nothing else because there simply was no treatment. By the time she died she had at least 3 spinal fractures and walking had been agony for years. Taking the "correct" dose of thyroid meds is not guaranteed to make life wonderful, and quality of life may suffer for all sorts of reasons.

5) If 50mcg of Levo is all you need to feel well, then great. But if you are under-medicated I wonder how you'll feel about it after 5 years or 10 years or 20 years of fatigue and brain fog and other hypothyroid symptoms. You may decide that quality of life is more important than quantity, after all.

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I wish someone would undertake some research in relation to long term under medication and the incidence of conditions such as heart disease and osteoporosis. Perhaps we could then try and bury the hatchet and Endo's could offer informed advice. I am convinced my body has suffered far more from several years of undiagnosed thyroid disease rather than from a suppressed TSH or a top of the range T3 level.

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Hi, really sorry that your poor mum suffered so badly. I do agree that GP's or the NHS underestimate how badly people suffer, and I suppose my poor mum was just trying her best to feel well. I think my thyroid has been underactive for many years before it showed up on blood tests. I know that because since taking levothyroxine many unpleasant symptoms have cleared up. I had what Drs said was probably food intolerances for about 20 years and have never suffered since diagnosis of Hashimotos and treatment. I'm not saying I feel great as I also have Sjogrens Syndrome, but I feel better than I did. I was also getting chest pains and they seem to have cleared up.

I do understand that people are desperate, I think we should all be under the care of an expert Endocrinologist but the NHS seems to think a GP can handle our complex condition.

You are right, my mum pleaded with her GP to send her to a Specialist for years as she'd had radioactive iodine treatment in her 30's for an overactive thyroid and in her 50's it had gone underactive but didn't show up on blood tests. Her GP wouldn't refer her saying, 'you'll be wasting their time'. When mum eventually got referred and was given thyroxine I think you're right and a lot of damage had been done.

I still wouldn't risk self medicating though, as I do think mums cardiac arrest was caused by too much armour - they did a post Morton and said there was slight heart damage and enlargement, but overdosing on thyroxine I think caused arrhythmia which in turn caused sudden death. I may be wrong but mum was warned not to take the extra dose because of the problems it could cause with the heart, so I have blamed it, although there was slight heart damage maybe caused because of the delay in treatment.

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I wonder whether you know that the "slight heart damage and enlargement" is a sign of longstanding untreated or under-treated hypothyroidism, not of over-treatment? Endocrinologists and cardiologists seem blissfully unware of this complication.

If you'd like to know more about this cardiac aspect of the condition, I haven't found a better discussion anywhere than in Dr Mark Starr's book, 'Hypothyroidism Type 2'. I recommend the updated 2011 edition or the 2013 reprint, but it's a US publication, so if you want a brand new copy you would have to buy it from Amazon.com. The later edition might be available second hand from the large used book dealers like Alibris and Abebooks, both of which have UK and US websites.

By the way, some of us on the forum have to ignore blood test results, because we have forms of resistance to thyroid hormone and we must take supraphysiological doses of T3 or desiccated thyroid hormone to overcome the 'block'.

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So your mother has RAI and then had no thyroid meds for around 20 years to make up the shortfall? That's dreadful!

Low T3 is one of the main causes of heart damage and enlargement - on fact T3 status is used by cardiologists as a predictor of death in those with heart problems.

So, although taking too much Armour might have precipitated the problem, I suspect that it was initiated by 20 years of non-treatment.

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Totally agree 💐

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Hi, I do appreciate all of your comments. My mum had iodine treatment fir an overactive thyroid in her 30's and in her 50's she developed underactive thyroid, which her GP dismissed for years, despite my mum pleading to be referred to a specialist so probably her heart was damaged then.

However, her sudden cardiac arrest dud make me extra careful with my medication. I do have blood tests every 6 weeks and my GP has increased my medication once in the two years I've been on levothyroxine. I don't feel great though - very anxious and tired but I suffer from Sjogrens Syndrome too and the symptoms overlap so it's difficult to judge. For now I'm leaving it to my GP as she is very good, but from other gut symptoms which have cleared up since thyroid ends I know I had thyroid problems fir many years before they showed up on a blood test, I even saw a cardiologist because of uneven heartbeats and xanthalasmas round my eyes without high cholesterol. He didn't mention thyroid as a possibility and I was sent away not knowing what was wrong for another three years so my heart may have been damaged already.

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So sorry about your mother's unfortunate situation. It is always important to read posts that redress the balance of information regarding thyroid disease. Although I don't self medicate, I have almost been driven to it due to ignorance, misinformation or a complete absence of an Endo or GP who knows anything substantial or even relevant about my condition. I am sure desperation frequently fuels self medication and this is a lifestyle choice that sadly should not have to be if our medical folk were trained, knowledgeable or even interested. If this forum is anything to go by, there is a complete dearth of these qualities.

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Hi, I completely agree - and it's not just thyroid conditions - I have Sjogrens Syndrome too and most medical staff have never heard of it, even though it's the second most common autoimmune condition. I feel with both conditions that I'm just struggling along. My mum was desperate to feel better and thought the larger dose helped her, but sadly I don't think it did and 11 years ago I think even less was understood

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Is there a very specific test that categorically confirms Sjogrens Syndrome? I ask this because I know some people have been incorrectly diagnosed with this, when it was actually caused by insufficient thyroid hormone.

I understand your concerns about over treatment, but someone I knew had a thyroidectomy for thyroid cancer, and was kept on TSH supressive amounts of levo by doctors all her life. She did have a quad bypass in her 70's, but lived into her 90's after that. It was her husband (with no history of thyroid issues) that died young following successive heart attacks.

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I have a diagnosis of Sjogrens but I think it’s definitely worse when I’m hypo! So I was beginning to wonder if it my symptoms which as allegedly sjogrens were actually my thyroid. The sjogrens symptoms are definitely better when I’m not suffering with my thyroid. 😜

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How did they test you for Sjogrens? If it was on symptoms alone, then I'd be suspicious. I suffered for years with too little saliva and had no idea why. Then came dry eyes, and then eventually hypothyroid diagnosis. Saliva, eyes etc are all absolutely fine when I'm on the right thyroid meds, but as soon as thyroid levels go wrong, saliva and eye issues kick in again. I'm sure the years of low saliva contributed to my dental probs, which also stopped when thyroid treatment was optimised.

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No I had a positive blood test and then further tests to check tear production all were strongly positive. I was diagnosed with sjogrens three years before I was diagnosed hypothyroid. I also have Ehlers Danlos. 💐

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Hi, I was tested with schirmer test for dry eyes and also for Ro and La antibodies linked to Sjogrens. I have one of the antibodies and extremely dry eyes and mouth so apparently that was enough to make a diagnosis. My Sjogrens symptoms haven't improved with thyroxine. My eyes are so dry that I don't even produce tears when I cry. Apparently it's very common to have Sjogrens and Hashimotos together due to a bonkers immune system!

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I am very sorry for your loss but I am equally adamant that I lost my mother to GP thyroid mismanagement.

From the Journal of Endocrinology

academic.oup.com/jcem/artic...

“Compared with a normal TSH, suppressed serum TSH was associated with a modest increase in cardiovascular morbidity and mortality, whereas high TSH was associated with a near doubling in risk. “

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Where the H... do Endo's get their information?

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I liked Huzat 's link and have bookmarked it. It tells us that having a suppressed TSH (≤0.03 mU/liter) is substantially safer than having a raised TSH (>4.0 mU/liter).

In terms that a GP would understand, this is saying that being mildly "hyperthyroid" is safer than being hypothyroid. Unfortunately most GPs think the opposite is true and try to keep all their hypothyroid patients under-treated.

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So sorry to hear about your mum but I have to agree with everything humanbean said. Sometimes quality of life becomes paramount.

I increased my medication and later went and confessed to a Doctor at my practice who has since increased my dose again. My own Doctor refused to increase my Levo from 25mcg and once told me I’d feel a lot better when the winter months came along and it was cooler when I complained about ‘cold sweats’ and chest pain.

I was having chest pains and coughing up blood stained mucus. When doctors couldn’t find a reason I was treated for angina. My resting heart rate was in the forties and I could barely walk, I was constantly breathless.

I was also diagnosed with postural orthostatic tachycardia because my blood pressure was dropping so low (60/40) that I couldn’t stand without passing out. I had a normal heart rhythm although I had an unusual looking trace it was what they called regular and they didn’t believe it was causing my low heart rate and chest pain.

When I first saw the cardiologist my tests from a halter monitor showed my heart rate was at that time 55 which he said was fine in spite of how I felt. Three months later I told him I recorded my heart dropping into the forties and he said that was physically impossible because three months earlier it was 55 and it couldn’t possibly have changed! I burst into tears and begged for a second heart monitor which he agreed too. He wrote to my doctor saying my trace showed my resting heart rate at 44 bpm but with a normal rhythm so he would see me in clinic in 6 months. I’m still waiting!

Each time I increased my Levo my RHR improved, it went to around 76 bpm, I didn’t have constant chest pains, the POTs was a lot better and mostly my blood pressure is 120/70. Over the last two weeks all my symptoms have started to return, heart rate and blood pressure have dropped again and I’m coughing up mucus. I know I’m still not fully medicated and I know I’m going to have a battle with my GP to get an increase and if he doesn’t I will definitely ignore him because the alternative is far worse. I would defy anyone to live with my symptoms when they are extreme. I can’t comprehend anyone wanting to live like that it’s a living hell.

I read that T3 is the active hormone that triggers the hearts natural pacemaker and without enough the heart won’t beat at the normal pace and will culminate in the symptoms I have. Why didn’t one of those doctor realise a thyroid problem could have been causing the problems I was having? No one ever checked my thyroid it was found much later (3 years).

Whilst I completely understand the need for caution when going against our doctors advice in the absence of a better alternative I don’t see any other way of achieving any quality of life. I was literally at the stage where I either increased my dose of Levo or I took an overdose and ended it all. I was that desperate. 💐

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I know this is just my experience but since being on T3 meds with a suppressed TSH I have never experienced a heart flutter or palpitation. This is a serious side effect if actual so surely with the prevalence of thyroid disease it justifies extensive research? Consequences possibly heart disease, osteoporosis? Meanwhile Endo's spout pure unsubstantiated tosh!

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Hi, I think that's how my poor mum felt - it was bad medical knowledge that caused her such a bad quality of life that she took matters into her own hands. I'm not saying I blame her, but at just 72 she was too young to die so suddenly and I wish there was far more knowledge when patients are struggling and not responding well to medication.

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How much NDT was she taking, exactly - if you don't mind my asking. :)

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In not sure, it was quite a while ago. However, I do agree that the mismanagement in mum's treatment possibly damaged her heart in any case and maybe taking too much armour tipped her already damaged heart into arrhythmia. My poor mum's hair was very thin and she was quite overweight despite a low fat diet and hardly any appetite. She also had tinnitus.

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Well, a low fat diet wouldn't have done her any good, and certainly wouldn't have made her lose weight. But, sometimes, what doctors think is a high dose really isn't. I was on Armour at one point and took six grains. I think it's far more likely that your mother was under-medicated, given all her symptoms.

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I self medicate but I regularly pay for detailed blood tests and discuss them with my endo. We are happy together and that's the way to stay safe.

janveron1

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I think that, as long as you have regular blood tests and know how to read them, and are aware of symptoms, self-medication can work just as well as monitoring by the average GP. Of course it is better to be managed by a knowledgeable doctor, but they are in very short supply.

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I am truly sorry to hear about your mother and I agree that in most cases it's best to listen to a GP or specialist, however not in all.

My GP ignored my symptoms for years until I lost my career, then she sent me to a private specialist (Dr Skinner) who diagnosed me with hypothyroidism and treated me using T3 and later NDT. I began to recover but my GP refused to take over treatment because she claimed that my blood tests had always been within range. What she refused to acknowledge was that, although in the ranges they were all low and she even told me that she didn't understand how to read the test results or what they meant - as you say in your post, "a little knowledge in the wrong hands...".

When Dr Skinner died I self-treated until I found an endocrinologist recommended in most of the thyroid groups. He was very thorough and for a year all was well, but then he told me that he did not consider me to ever have needed thyroid hormones, that I was in danger of stroke, heart attack etc. and I must lower my dose.

As the old symptoms re-appeared he blamed every other condition he could think of and asked my (new) GP to send me to a variety of other specialists for numerous tests, most of which I had had prior to seeing Dr Skinner. One of those specialists, a neurologist, told me that I had a choice: to continue with the endocrinologist and have an ever-more miserable life, or to self-treat and get better again.

I chose the latter option until a few people here started to mention an endocrinologist in my area to whom my new GP was happy to refer me. That specialist has agreed with Dr Skinner's original diagnosis and not only prescribes for me, albeit privately, but has increased my dose by half as much again. I am starting to feel human again and I do not consider myself in danger of death.

Which one of those doctor should someone like me have listened to - my old GP who is married to a lawyer and considered her reputation to be more important than a patient's health (incidentally I was one of three of her patients to get better thanks to Dr Skinner's treatment and all of us were refused continuing treatment by her); Dr Skinner whom the GMC tried to prevent practising but who probably saved my life; the first endocrinologist who wasn't prepared to consider anything but straightforward hypothyroidism in his patients; or the new endocrinologist who understands that patients are individuals and require individual diagnosis and treatment? If it were as simple as listening to a doctor the need for groups such as this wouldn't exist!

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I self medicated for five years. I had to. No doctor was going to get my life back for me. It took me five years of telling them I thought I needed Liothyronine. Eventually, I had a genetic test done that showed I have a conversion problem. I’m now prescribed Lio. I dread to think where I’d have been now if i hadn’t self medicated.

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Hi, I wonder if that was what my mum's problem was, if I find myself feeling worse despite Levothyroxine I think I'll ask for that test. Taking more Levothyroxine probably doesn't help much if you need different medication which maybe why my mum was never well - thank you for that information. I've made a note in case I need it!

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My dose of Levo went as high as 200mcgs a day but it did nothing for me. I just got sicker and felt poisoned.

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Exactly this!! Levo makes me feel poisoned and rotten! What is the test to ask for please? I have an endo appointment in jan (first one ever) and i will ask if i can have it

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I doubt if the endo will test you for it. It’s called a DIO2 conversion test. Some people have a reduced ability to convert T4 to T3 because of a genetic abnormality. My test showed I had the heterozygous form, meaning I’d inherited this reduced ability from only one of my parents.

I ordered the test kit from Regenerus Labs and it was about £80.

Being able to show my doctor the results of the test was instrumental in my being prescribed Liothyronine.

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That’s fabulous information, thank you so much

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I’m just having a look and was just wondering, did you also pay the £65 counselling fee, or is there a way around that?

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I got the results sent to my doctor, who looked at them and said they seemed to indicate that I needed T3. I’m not sure if it’s still the case but, if you get the results sent to your GP, you shouldn’t have to pay the counselling fee.

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Brilliant, thank you

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Yes I know it's a very complicated condition and I don't think the blood tests alone indicate what's wrong. I've had symptoms for many years but had annual blood tests for Sjogrens and according to the blood tests my thyroid was fine until last year when it finally showed up that it was underactive on my Sjogrens annual tests which, incidentally my Rheumatoligist had stopped and thankfully my GP was horrified and now does them. I really don't know the answer as going by my mum, obviously the treatments we're given aren't working that well. Unfortunately, autoimmune conditions in general seem to have been overlooked and the treatment for them all isn't great. If the immune system could be controlled and stopped from attacking our bodies there'd be many happy, well people in this world. Until then we struggle on with inadequate treatment, which never seems to work very well.

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I find it really sad that 11 years since my mum passed away nothing has improved. Everything raised we looked into - we read a book by Dr Durrant Peatfield with all of this information. When are the medical profession going to understand this illness and prescribe something that truly works for everyone or, even better cure it!

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I am sad to read your post regarding your mother.

I only had my thyroid removed three years ago, before that I was not taking any medication. I was never overweight and did plenty of exercise.

After taking Levo for 6/7 months I had to be helped onto my feet from the floor had weight gain and severe pain. I then joined this site and now self medicate with NDT and feel great and I am 72 years old. I started by taking a Blue Horizon test and waited for answers. I bought NDT and started with 1/2 grain. I slowly increased to three grains I started to lose weight and felt palps so I took another Blue Horizon test and my FT3 was way over the top level so I then reduced down.

Perhaps your Mum had an underlying heart problem? Anyway I am sorry.

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'A little knowledge in the wrong hands can be dangerous...' Especially when it's in the hands of incompetent endocrinologists and GPs! Doctors kept me ill with ever-increasing doses of T4 for a full 7 years before they finally tried me on T3 which changed my life for the better for me. For the last 8 years they have allowed me to adjust my own doses and one GP even admitted that I probably knew more about my condition than she did! They still monitor me with blood tests and I've also had ECGs and Bone Density Scans done, all of which are fine. Living with this condition and stumbling across this website and ThyroidUK have gradually given me the power to take my healthcare out of the hands of ignorant and, in many cases, arrogant doctors who couldn't give a damn about it!

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