GP is refusing to medicate, I've only had two b... - Thyroid UK

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GP is refusing to medicate, I've only had two blood tests done but have always felt lethargic, now memory loss.

lethyadon profile image
52 Replies

Hi basically I'm male, 26, did my dissertation this year...can't remember it. used to work out 5 times a week before it got really bad. I put on 3-4 stone of fat within a year and I just can't shift it. now I sit at 15.5 stone, still muscular but a fair amount of fat around my stomach. (everyone in my family, cousins etc are ALL skinny.)

Blood tests:

Dec 2015

t4 XaERr: 17.0pmol/L

XaELV: 9.5 mu/L

Feb 2016

T4 XaERr: 17.8 pmol/L

XaELV: 6.2mu/L

Thyroid peroxidase antibody concentration XabCy: 28 iu/ml

I don't know what other results are needed but everything else on the chart says it's normal. except

Mean cell volume (42A..): 80fl

Mean cell haemoglobin XE2pb: 27.6

I've gone back and GP has said they will check d12 with this blood test. What should I do? I've always had a bit of a belly (except when I starved myself and got a 6 pack) but never gone up 6 inches in waist size within two years.

I now have a double chin and hate looking at myself in the mirror.

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lethyadon
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52 Replies

Hello Lethyadon, have you got the reference ranges for your tests, difficult to see where you are within them.

Rennixon profile image
Rennixon

Hi lethyadon ,

I don't normally respond to posts as I can't offer much help( you're thinking why then) but I just wanted to say, don't give up, the help on here is spectacular. When I was untreated I lost about 2 years memories- no clue what I did & when!! It's very frustrating but if your ill keep pushing. I'm just on another battle now & know how hard it is. Last September I was size 10, I'm now size 14!! It's happened before & probably will again but that doesn't mean I won't loose it. It's easier said than done but try to hang on & fight for yourself good luck

Rx

lethyadon profile image
lethyadon

Thanks for the replies,

The rnges for t4 are 10.0-19.8 and the TSH levels are 0.3-5.5

It's just frustrating working hard and still not losing the weight, knowing it could be beyond my control is the worst part. when I was 21 if I saw a bit of flab I'd work out for a few months and boom it would be gone.

sweetsusie profile image
sweetsusie in reply to lethyadon

Make sure you have the TSH, etc. tested as early in the morning as possible as levels drop throughout the day...and don't eat anything before the testing either. I finally, after more than 2 years of suffering terrible fatigue...weight gain, etc., had a high enough TSH reading to "qualify" for levothyro. med! Hang in...you are not alone and this blog is GREAT support!

Feelbetter profile image
Feelbetter

Please look up High intensity interval training. You may feel awful, but a very short quite intensive session (I do a 3 min warm up walking then 45 secs sprint, active rest walk x6) then 3 min cool down once or twice a week, and my belly fat has shrunk. Nutrition is KEY- please read the Wahls Protocol- a brilliant book. Good luck.

greygoose profile image
greygoose in reply to Feelbetter

That is not the right thing to do for a hypo. Exercising uses up T3 and will make him even more hypo and put on more weight. Just gentle walking and swimming until his T3 is optimised.

Do you have a thyroid problem, Feelbetter?

Feelbetter profile image
Feelbetter in reply to greygoose

As a nutritionist, I would always say food is more important than exercise for losing weight, (80% diet and 20% exercise for weight loss) and the book I recommended shows how an MS sufferer (qualified practising Doctor) reversed her condition through diet and lifestyle. I have numerous health problems, and I lead a meaningful life thanks to my diet and lifestyle. The bottom line is that everyone is different and you need to listen to your own body. Always work with your Doctor, who will hopefully support your positive improved lifestyle choices. We may offer our advice through our own personal experiences, but only you can judge what is best for YOU. I like to offer support, not criticism or judgement. I have a good track record with my clients losing weight with no deprivation, and improved health. Mindfulness meditation is also great for de-stressing😃

greygoose profile image
greygoose in reply to Feelbetter

Sorry, are you talking to me? I'm not asking for advice. And if you think working with a doctor is an option, then, sorry, you Don't know much about thyroid.

Thyroid is not the same as MS. I Don't know anything about MS, perhaps you can reverse it with diet and lifestyle. But that is rarely, if ever, possible with thyroid. Food cannot replace hormones. And, if you have a damaged thyroid due to Hashi's, that will not regrow, you will need to replace those hormones.

Hypo weight-gain is rarely anything to do with food. We Don't over-eat. Most of the time we Under-eat, which makes us more hypo because you need calories to convert T4 to T3. Optimal T3 is the key to weight-loss when you are hypo, not diet or exercise.

Feelbetter profile image
Feelbetter in reply to greygoose

I disagree with you. Yes, you need medications to treat thyroid, but food matters. Diet and lifestyle are crucial for everyone's health! Everyone can help themselves and take control of at least part of their health) through diet and lifestyle. The book is a great illustration. MS is a chronic illness, as is cancer, chronic pain et al. This forum is to support each other, and that's what I always try to do😃 Also there are many doctors who can work with you, and it's a shame you feel let down. Food is not simply calories, it's the quality and choices that are so important. I believe in holistic health. Take care, greygoose 🙋🏼

greygoose profile image
greygoose in reply to Feelbetter

Thank you, but I do know that food isn't just calories. I'm not that ignorant! And, MS may be a chronic illness but it is not hormonal, that's the difference.

I didn't say you didn't need food to treat thyroid, I said food won't cure it - enormous difference!

Yes, everyone can take charge of their diet, of course they can, but that really isn't the point, is it. My original comment was that hypos should not be doing strenous exercise because hypo weight-gain has nothing to do with calories. However, exercise uses up their T3 which will just make them more hypo and put on more weight. That, in my book, is supporting people, telling them what isn't a good idea. Have you even read anything I've said? I did not ask for a lecture on food.

Do you live in the UK? How many doctors have you found there who know anything about thyroid? Because reading on here will tell you that not very many do. I live in France, and it's very much the same. Doctors know nothing about thyroid. Nor do they know anything about nutrition. They think vitamins and minerals are irrelevant. How can you work with a doctor like that? But, I will ask you again; do you have a thyroid condition?

faith63 profile image
faith63 in reply to Feelbetter

feelbetter..my personal opinion, based on extensive research, is that ms and hashimoto's and most other autoimmune disease, can be reversed by diet and healing the gut, eliminating food sensitivities and lowering inflammation. . It is through functional medicine..i guarantee you NO mainstream medicine doctor will believe it..it is not what they were taught and not a money maker, which is what it is all about these days. What kind of doctor are you referring to?

Terry Wahls MD, reveresed her ms, through clean eating..amazing.

From what i have read, people can get off thyroid meds..if they still have a gland and the Hypothalamus and Pituitary function proper..once hashimotos is put into remission. Of course..you start eating junk again and it can come back.

I don't care if others believe it or not, but , mainstream medicine has offered me no treatment for my bad immune system and say there is no cure for autoimmune disease..i am banking on it, that that is totally false. I have not felt well on any thyroid meds or since developing hashimoto's. I HAVE to get rid of it to have a life.

Granny56 profile image
Granny56 in reply to faith63

I agree that auto immune diseases can be halted in their trajectory in some cases by diet and exercises but this does not cure the disease. In MS the damage to nerve cells causes disability. According to the MS society:

"Over time, this environment causes nerve cells to die (a process called neurodegeneration) and can lead to the permanent accumulation of disability. There are currently no treatments available that can keep nerve cells healthy or regenerate nerve cells. "

mssociety.org.uk/node/692475

Equally so, the damage done to the thyroid gland in the case of Hashimoto disease will also not repair itself. Reducing inflammatory biomarkers might help to halt the progress in auto immune disease but there are more things to consider than simply lifestyle and environment.

Perhaps the new " omic" metabolomic stydies can help. This is an approach to study the metabolites and their pathways which has the ability to map metabolites in individuals therefore aid in diagnosis and treatment specific care.

faith63 profile image
faith63 in reply to Granny56

yes, the diet does get rid of the disease. Eating clean real foods, can heal it, if this is the cause of the disease. Dr. Terry Wahls was in a wheelchair for years, unable to feed herself and is now doing Marathons. Of course, mainstream MS Society, is all about profit from drug companies, so they will gladly ignore those getting well. Dr. Mark Hyman, has many articles and cases of autoimmune disease reversing on diet changes. He does this for a living and see's it every day. It is all over the internet and it is true.

I have Hashimotos and my thyroid is normal on a scan. The thyroid can regrow, but not back to normal, if most all is missing, of course.

Granny56 profile image
Granny56 in reply to Feelbetter

Cancer can manefest into a chronic illness where treatments are available to halt its progress over time. These cancers can go in and out of remission and some people might get "cured". Some cancers however, are acute, for example an oat cell lung cancer for which there is no long term prognosis, cancer cells grow and multiply very quickly and in the case of my father, he was dead within 8 weeks of diagnosis...hardly chronic. At 44kg, I doubt whether diet and excersise could have helped.

I agree with you Feelbetter about holistic health but holism includes patients making decision about their own care which some doctors and healthcare professionals seem to dismiss as not being necessary.

I eat a very healthy diet, walk (slowly due to muscle problems) more than the recommended 10,000 steps a day. Yesterday, according to my device, I climbed 18 flights of stairs ( albeit very painfully) I also attend cardiac gymnastics every Thursday which is supervised by a physician and I eat more than 5 portions of fresh fruit and veg per day in my 1200 calorie or less diet. So why is my BMI 37?

greygoose profile image
greygoose in reply to Granny56

Because you're not eating enough. This thread did not start out to talk about cancer, or MS, this is about hypothyroidism, about hormones, and they Don't adhere to any of the rules of other diseases. When you are hypo you need more calories than the average for you body to be able to function correctly - although, you could say that 1200 calories isn't enough for anyone.

Low calorie has an adverse effect on conversion. And if you can't convert well, you become more and more hypo, and even if that doesn't make you put on more weight, it will stop you losing it. Besides, I doubt the weight is even fat, so how can cutting back your calories affect it?

What you need to lose weight is good levels of T3, and you won't get those by starving yourself or knocking yourself out with exercise.

Granny56 profile image
Granny56 in reply to greygoose

Greygoose, I am not starving myself, cutting back on calories or knocking myself out with exercise. I have complex multiple pathologies which includes secondary adrenal dysfunction, with this I have no appetite, I couldn't eat more if I tried. I also live in an urban location which means I need to walk to get around as I will not take the risk of driving while my muscles are going into spasm withou warning.

In the evening, my legs tend to swell, other than this my body is not full of fluid. Last year it was and when I got rid of the excess fluid, 3 kg went with it.

Excercise for my heart muscle is essential if I want to live longer than the average person with heart failure.

It is not easy to juggle the needs of every illness and to monitor the potential harm from complex poly pharmacy but I try my best.

I agree that I need T3 and have been chipping away at doctors to prescribe it. Yesterday I suceeded and have a prescription for 20 tablets of Thybon as a trial. I will ooen another thread for advice on this matter.

greygoose profile image
greygoose in reply to Granny56

Well done for the T3!

Yes, I realise that a lot of hypos have no appetite, which is what makes it all so unfair. But, whatever the reason, you're still not eating enough to lose weight.

But, I think you may have mucin, not just ordinary water retention. That's something that only us Lucky hypos get! Otherwise, the weight would more than likely have gone, eating so little.

And I realise you need exercise for your heart, we all do, but it's also very bad for your heart to be low on T3 because you've used it all up exercising. It's difficult to balance, I know.

This isn't a personal attack. :) The information is the same for everyone. If you Don't eat enough you Don't have enough calories for good conversion, and exercise uses up your T3 which you cannot easily replace. The combination is problematic.

Granny56 profile image
Granny56 in reply to greygoose

Thanks, I hope to become a new woman with my T3:-)

Granny56 profile image
Granny56 in reply to Feelbetter

I would seriousy doubt your claim that MS can be cured with diet and exercise Feelbetter , it sounds more like a misdiagnosis to begin with.

In MS, there is damage to the myelin sheath coving the nerve cells called skip lesions if my memory serves me well. These lesions prevent the normal electrical conductivity and impulses to flow normally through the nerve cell which is why for example when someone with MS tries to walk, sometimes their legs give way under them if the nerves feeding the leg muscles are damaged. MS is also classified under the auto immune group of illness and to my kniwledge there is neither a cure not proper understanding of its cause.

Feelbetter profile image
Feelbetter in reply to Granny56

Why don't you read the book then, or at least do some research? The Wahl's Protocol.

I'm not surprised your doubt, only the studies can prove their worth. It would be wonderful if you were willing to learn and open your mind.

Granny56 profile image
Granny56 in reply to Feelbetter

You assume too much. You have no idea of my educational background or what books I have read..

thyr01d profile image
thyr01d in reply to Feelbetter

Hi Feelbetter

Please excuse this 'through you' conversation Lethyadon

What you say is very interesting, have there been Peer-reviewed Controlled Research Trials that support the claims?

I ask because my daughter, a vet, often comes across cases where an owner thinks their animal has miraculously recovered from some serious illness but when my daughter reviews the notes and the symptoms at the time of diagnosis, she, being an advanced practitioner, sees anomalies and that the original diagnosis though signed was not correct. I would really like to know if there were CRTs with people whose diagnoses was absolutely certain.

I am open to all sorts but concerned when sick people follow false hope, especially if that means restricting their diet or food intake.

The exploration of faecal transplants and the discovery that eating a very wide variety of foods seems to be remarkably healing is interesting in this respect.

faith63 profile image
faith63 in reply to Granny56

yes..autoimmune disease can be cured and brought into remission permanently with diet..YES..go to youtube and watch terry wahl's story, then. Read Dr. Mark Hyman's articles, read about grain causing pain and autoimmune disease. By ignoring that this happens, you are only going to leave yourself ill. Mainstream medicine and their drugs, have made many ill..permanently. My son and i are 2 such people. They throw a pill at it and don't look for root causes..ever. The studies on many drugs are fixed, in order to get approval. Not only physical, but mental illness is associated with food sensitivities. There are non mainstream doctors making people well again everyday, curing disease. The media has an interest to not let it out there. Pharmaceutical companies are ruling the world. They even donate for campaign funds for government officials. We were taught our whole lives that we need drugs..its a lie. It was all a big sales pitch.

jennygrigg profile image
jennygrigg in reply to Feelbetter

Please do not consider this an attack on your opinion or advice, because I think it is wonderful that you are helping, and you are correct about lifestyle changes, (I think the book you're referring to is The Wahl's protocol) but it would probably be more prudent to have a full range of health checks, including saliva cortisol testing first.Terri Wahls didn't commence her recovery with HIT training, she worked on many other factors in a slow and methodical way. If Lethyadon has adrenal issues, which is quite possible, then high intensity exercise could make things worse. However, I totally agree on making critical lifestyle changes, particularly to one's diet :)

Feelbetter profile image
Feelbetter in reply to jennygrigg

Of course I don't mind constructive criticism- you have a very kind-hearted way of communicating (not like another unpleasant encounter I had-but no point in holding onto that as people do have problems and have likely never learned how to be diplomatic) . I have been recommended a saliva cortisol test myself, but for me despite my own chronic fatigue my exercise regimen works wonders for me. HI generates growth hormone which gives massive energy boosts. But what works for me may not work for someone else. Dr Wahl's was in a tilt recline wheelchair and could hardly walk, so she didn't improve her MS with HIIT!! She values the dietary changes the most, I believe. We are all unique, and I totally believe in individualised treatment protocols. It would be SO good if integrative & functional practitioners were available not only on the NHS but also on private health insurance. I already spend most of my spare funds on health. I am a nutritionist, and food has made the biggest improvement to my own health, and I have managed to come off all meds (except hormones). I am not medically trained although my docs agree I know more about nutrition than they do (I do have a business in it after all!)

Thank you for your comments.

thyr01d profile image
thyr01d in reply to Feelbetter

Oh Feelbetter I am disappointed in you. Greygoose was pointing out that diet and exercise cannot replace the hormones we need and now you write that you are still on hormones.

Greygoose has helped many, many of us and is generous and kind-hearted. She's not bringing in any ego, just offering advice and help.

faith63 profile image
faith63 in reply to Feelbetter

A person with these symptoms, should not force himself to do anything more than walk..you become more hypo and gain more weight, using up your t3 stores for exercise..it happened to me. Exercise made me very ill..greygoose is right!

greygoose profile image
greygoose in reply to faith63

Thank you, faith.

faith63 profile image
faith63 in reply to greygoose

you are welcome..

headinjuryhypo profile image
headinjuryhypo

Putting on weight needn't necessarily be caused by thyroid problems, it could be growth hormone deficiency. Thyroid stimulating hormone and growth hormone are both produced by your pituitary, so if you have a pituitary problem they could both be affected. Pituitary problems can be caused by head injury, even concussion, or by a small tumour - many reasons. The 'gold standard' test to diagnose growth hormone deficiency is the insulin stress test (also called the insulin tolerance test), and if they won't give you that, the glucagon stimulation test is also reasonable and the GHRH + Arginine test is good. This article is good hindawi.com/journals/ije/20...

hellybaybee profile image
hellybaybee

Your T4 is a bit on the high side I think, which is your tsh? Probably worth pressing for your t3, vitamin d etc... They can have an effect on weight

greygoose profile image
greygoose

I take it that XaELV is TSH. Strange to have such a high TSH with an FT4 like that. Possibly, you aren't converting very well and your T3 is low. Did your doctor say why he wouldn't 'medicate'?

Your weight-gain probably isn't fat, it's water, and you won't lose it until your T3 is optimised. You really must press for an FT3 test, or get it done privately. It is key to understanding your results. :)

BadHare profile image
BadHare

Hi,

Ask your GP to check your prolactin levels, as well.

M*

Dee1980 profile image
Dee1980

I've been looking into the causes of brain fog and weight gain, I know it's an issue with thyroid. What is your diet like?

Lera profile image
Lera

Try looking at your mind & not your body fat - concentrate on positivity spread eating times, eat slowly drink low calories & lots of drinking when hungry

BonsaiKid profile image
BonsaiKid

Your serum TSH level is too high. In spite of the normal T4 you should still be tested for your T3 level. Thyroid function is linked to adrenal function and if you were stressed while doing your dissertation then this could be a cause. High cortisol levels could have affected your weight too. What is your diet like? It's most likely a combination of things and not down to just one. You need to look at the whole body.

I do hope that you will soon get this sorted out.

lethyadon profile image
lethyadon

My diet is all weighed, I have plain porridge in the morning, plain chicken breast, rice, broccoli for lunch and the same for dinner or steak. I also only drink water. When exercising 5 days a week I was definitely gaining fat but also muscle.

humanbean profile image
humanbean in reply to lethyadon

Your diet sounds boring, inadequate, unhealthy, and very, very depressing. Don't you eat any fat? Your diet is putting your body into famine mode so it will hang on to every single calorie and every single gram of fat rather than release it to provide you with energy in your day to day life.

thyr01d profile image
thyr01d in reply to lethyadon

Hello Lethyadon, I think you should keep searching for a cause, there is much myth about food intake and weight gain and little recognition of the other causes.

People on here are really knowledgeable and I'm sure some of this advice will point you in the right direction.

lethyadon profile image
lethyadon

P.S I really appreciate all the feedback. I'll keep you all posted when I get results next week and push for FT3 test. Could any of this be linked to Testosterone levels as well?

Jen15 profile image
Jen15 in reply to lethyadon

Hi lethydon,

Sorry to hear that you are suffering like this.

All of my blood test results were within range but I felt dreadful . After 8 years of blood tests and my GP telling me my thyroid was fine I finally decided to go to an endocrinologist(I just rang up one at a private clinic and booked it myself, it cost £180 to see him) and he immediately recognised when he looked through my blood test results that the ratios between my TSH,T4 AND T3 were wrong (although they were all within range!). He immediately realised I was hypothyroid and put me on Thyroxine .In 4 months I felt completely better.

My advice is to bypass Gps and go to an endocrinologist with a print out of your blood test results(the NHS have to let you have a print out). This is specialized stuff that is beyond the understanding of GPs.

Eddie83 profile image
Eddie83 in reply to Jen15

Unfortunately ... thyroid expertise is beyond the capability of those endos who have focused on treating diabetes, or have bought into the pronouncements from the "official" thyroid societies that are beating the drum for TSH & T4. And like the medical profession in general, too many of them have personality quirks and biases that limit their effectiveness. I went to an endo who was like this, and I lasted only thru the 2nd appointment.

faith63 profile image
faith63 in reply to Jen15

an endo is the worst doctor for thyroid..it is still the same thing. If the tests are in range, it is not the thyroid, which is untrue. Besides, WHY is this happening and treat the WHY and the body can repair itself.

lesley17 profile image
lesley17

Have you been tested for Cushings? It might be worth asking your doctor to test you because you appear to be showing symptoms of this disease. I too have had hell with doctors concerning their interpretation of my thyroid function test results. I can home from the USA last year on a dosage of 150 mcg and my GP wanted to reduce it to 25mcg! I would also suggest asking your doctor to consider your symptoms as well as your test results. Good luck!

Eddie83 profile image
Eddie83

Don't know what t4 XaERr and XaELV are. Please explain. If XaELV is TSH, then yes, you are definitely hypothyroid. You must also post the ref ranges for each test that should be on your lab paperwork.

Yes, hypothyroidism causes memory loss, one of the 300+ symptoms caused by thyroid. As I know all too well. I was asked to leave my last job because of thyroid-caused memory loss. Memory loss and slow cognition also make it very difficult to deal with snarky doctors.

Having said that: I don't know where you are or what your doctor is thinking, but he is clearly lacking in expertise. Anyone who has primary hypothyroidism should have all of the tests: TSH FT3 FT4 rT3 TPOAb TGAb, to really get a feel for what is going on. Taking TSH and T4/FT4 does not provide sufficient information. It provides NO information about your T4->T3 conversion.

The fact that your TPO antibody test is as high as it is, is a possible indication that you have Hashimoto's. Autoimmune disorders are frequently caused by enteropathy/leaky gut. A dietary cleanup is likely in order, starting with gluten and dairy. You should also avoid agricultural chemicals as much as possible, starting with glyphosate - esp. if you are in the U.S.

WIth low thyroid, I would NOT recommend hard workouts. The difference between working out hypothyroid, and working out euthyroid, is like night and day. Pushing your body hard while hypothyroid, is not going to benefit you.

LAHs profile image
LAHs in reply to Eddie83

Hi Eddie, I agree. I dedicated three months last year to exercising one and one half hours per day! I increased my dose of Armour NDT a little bit (half a grain) and did not lose even one ounce. I became very discouraged and have not exercised very much lately but I did start taking 25ug of T3 in the afternoon, I have lost 4 pounds! (in a couple of weeks). I know that isn't much but I will report my progress when I have something more substantial to report.

thyr01d profile image
thyr01d

Hi Sandy 12, and excuse me please Lyathon, I would really like more info please on this. I have been diagnosed with CFS, fibromyalgia and depression and continue with u-a-thyroid symptoms although on Levothyroxine.

Granny56 profile image
Granny56

Do you have an occupational health department in your university, if so, maybe they can re run the tests for you to include a complete thyroid profile?

faith63 profile image
faith63

still best to get rid of WHY their is resistance..it is usually diet related like food allergy and sensitivity.

faith63 profile image
faith63

The people that i know with food issues, have no thyroid issues . at least not symptoms like i do. With there being many, many , reasons for thyroid hormone resistance, like high blood sugar, autoimmune disease, inflammation, cortisol too low or too high etc..i believe most is not genetic. I was fine and had non of my current symptoms, until i developed hashimoto's. My gut is a wreck now too. it stopped digesting food when i developed autoimmune disease. Autoimmune disease can also cause leaky gut and the leaky gut can cause autoimmune disease..it works both ways.

Feelbetter profile image
Feelbetter

There's another brilliant resource by Abel James, who has written a book. Look up 'Fat burning man'. He was and is still a young man with multiple health problems, so he can relate. It may not be thyroid, but worth taking a look! He used to be fat, and felt like cxxp is now ripped, and looks so fit. I really hope you can find what you're looking for and feel better soon😃.

First, you should use the internet to research empathetic, sympathetic general Practitioners with a thyroid interest where you live, then you should I change your doctor for someone who actually listens to you and is not merely fixated upon laboratory results. Clearly, from what you have described , there is something seriously amiss with your endocrine system and you need to get to the bottom of it without delay! If you live in the UK, this site may recommend doctors. If you are like myself, living in the southern hemisphere in NZ, you may need to resort to trial and error. I had 4 doctors before I finally found one who put more weight upon clinical symptoms than laboratory results.

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