I’ve had thyroid problems for over 20 years now. Initially I was diagnosed with hyperthyroidism, by my G.P. who arranged an appointment with endocrinologist. I wasn’t given much information at the time and was given the advice that having RAI treatment was my best option as he told me it was easier to treat an under active thyroid than an over active one! I was none the wiser, so trusted his advice and had RAI treatment.
I’ve been taking Levothyroxine for many years now , , initially things were stable, , but over the past few years, I’ve been having problems, breathlessness, periods of erratic heartbeats, ( G.P. didn’t link this to thyroid and sent me fo Ecco cardiogram which was normal.
Also for the past couple of years I’ve had a lot of gut problems with periods of diarrhoea, then constipation.
Been investigated for that with colonoscopy and OGD. Results all normal.
It’s only since I recently joined this forum , that I have gained a lot more information and realise how all my awful symptoms can relate to my thyroid function.
I’ve never been given information about optimal vitamins from a medical professional.
And of course I’ve never had my T3 levels checked, by G.P.( May have had them checked with endocrinologist initially, but have no record.
I’m now going through a horrible phase of lethargy, hair dropping out, feeling low , craving sugar.
I’m going back to my G.P. to check my thyroid levels. (It will only be T4 and TSH .)
I’ve just sent of my blood sample to Medichecks for T 3 , so I can compare both sets of results.
I think it’s a crime that thyroid sufferers are so badly treated and mismanaged by the medical profession .
I’m so grateful to this site for the information provided and to know I am not alone .Read less
(I will post my results when I receive them for guidance )
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Golli
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You've come to a wonderful place. There are so many people here who will have advice and guidance for you. I just found this website maybe a week ago and it's been such a blessing!
I'm so sorry for how you are feeling and what you are going through. I'm going to allow the more experienced members to address most of what you are talking about... like you, I had RAI, but I've only been at this for about a year and so I'm learning. But I have a lot of experience with gut problems.
You do need to get any gut problems under control. Your entire existence will depend on it. It affects absorption and function of all your medications, your level of inflammation, your levels of good and bad bacteria, just anything you can think of will be affected if you have leaky gut or other gut issues. An anti-inflammatory diet is a wonderful place to start.
The entire body sometimes needs to be reset. Your body works like a Swiss watch with gears. You take away 1 gear and nothing works properly anymore.
I had RAI too because I knew nothing about my condition and just listened to what the endocrinologist told me. It's been quite something, let me tell you.
I agree with you, it's a crime how those with thyroid and autoimmune issues are treated in the medical industry. We are treated as if it's all in our heads. They can do an MRI or an echocardiogram and pretend as if we really don't have anything wrong. How awful!
Even though I'm still learning, I'm open if you would like to ask any questions or if there's anything I can do to help. I know exactly how you feel, trust me. And there will be plenty more to help you if you have questions.
I’m in the process of eliminating certain inflammatory foods from my diet, it’s a bit of a minefield eating out , at times , at least I can control my diet at home, I’ve had to leave so many social occasions in the past when after eating I’ve become ill with diarrhoea and vomiting. . I’m now on medication for IBS which has helped a lot.
I would be grateful for any helpful dietary info to help my situation.
Sometimes I think if thyroid problems were more prevalent in Men, things may be handled differently and change for the better!😁
You're welcome. Our stories have a lot of similarities, only you have been at this longer than I have, and my heart goes out to you for that.
As far as diet, I believe every person with thyroid issues benefits from a full on anti inflammatory diet, no cheating. Believe it or not, it can be fun teaching yourself to eat to live rather than live to eat, and utilize food as healing nourishment rather than just stuff that tastes good and makes our bellies full. I would be more than happy to send you my list of foods in private message if you like, so I'm not further clogging up your thread here.
Getting rid of inflamation will allow your meds to work at their potential, help flush reverse t3 and antibodies that cause us so many issues, and heal you from the inside out. I'm currently in the process of doing this and I refuse to go back to the old way of eating.
You're right, if thyroid issues were a man problem, there would be cures by now! Lol I have no doubt.
Sorry to just jump in and message you following your response to Golli.
I would be ever so grateful if you could private message me your food list.
I am struggling big time... had thyroid problem for many years (was hyper, had RAI and now hypo). I am now trying to deal with the huge impact having lost my whole family , my thyroid health and well being have never been so bad. My Endo is trying to work out what’s going on with me and although I am trying desperately to help myself with what I consume.... your experience and list would be fabulous. Thank you so much, sending my love to both you and Golli. x
Hi Renee, I too would love to see your list of foods, I am only early diagnosed with Graves (7th Feb) and it’s a real minefield of info out there. I have read about anti-inflammatory diets and are pretty keen to give it a go.
First off, always choose pasture raised and organic meats when possible. Going all organic is great, but organic grass fed or pasture raised meats are most important, if available.
A must every day is drink 8 oz organic bone broth and 3 tablespoons raw apple cider vinegar. Most of us have leaky gut and the broth and vinegar will help immensely, along with the rest of the diet.
-Most important fats to include (should make up the bulk of your calories)... coconut oil, avocado, grass fed butter or ghee, extra virgin olive oil
-Legumes and seeds... pumpkin seeds, sunflower seeds, flax seeds
-Coconut flour or almond four are the only 2 acceptable flours. Absolutely no wheat, no barley.
No eggs! They are inflammatory. And be sure to check labels of everything. No processed foods of any kind, no processed meats such as sausage. No pork.
This diet isn't necessarily forever. But it will be something to stick to for at least 6 months and then at that time, you can add in a restricted food now and then to see how your body reacts, of you wish.
I highly recommend this. And I highly recommend no cheating lol. I find if it's not done right, it sets you back quite a bit. It will help your whole body to start working in sync and help any meds you take to work properly.
People here suggest that we all get our blood tested for vitamin deficiencies. This is very important. That way you can add appropriate foods and supplements to your daily diet.
Message me anytime if you have questions or if you would like some recipes based on this list.
Hi Renee, would you be able to share a list of anti inflammatory foods to eat. I am hypo on meds for 3 years and struggling with bloated tummy, pains etc. Waiting for medichecks test as never had full test so would be grateful if you could share what works for you.
Hello, it's a nightmare isnt it. I have been down a similar path and am now on erfa NDT, but still have fatigue as I had a stroke. Just wondering if your GP has checked your TTG as well as I believe Graves (if it was autoimmune hyperthyroidism) is linked to coeliac disease.....
Well the result was normal because it wasn't happening at the time. And ECG is useless unless you catch it mid flow.
Beware jumping to conclusions that seem to offer help like massive dietary changes. Test first. Get those vitamins tested. Vitamin D, Active (not serum) B12, full Iron panel, and then lets see your results. You need to do Active B12 yourself, your GP will just do serum and that's not very helpful (even the NHS Direct web site admits that!). If all these things turned out to be optimal (which they won't, but if they did) then you could start tinkering with diet. But find out first what's wrong or you could end up making it worse, especially the B12 and iron.
You say you are on IBS medication. Some of those can worsen vitamin B12 status.
When I get my blood results back I’m definitely going to get vitamin levels checked by Medichecks ( those that are recommended on this site) .
By the way I had an Echo done which is an ultrasound of the heart , rather than a ECG which is a tracing of the heart rare , but I suppose it could make a difference if symptoms weren’t happening at that particular time , - was told all looked normal.
I'm so glad my Endocrinologist in South Africa didn't recommend RAI for me. I had serious Graves with attendant eye problems and several eye operations, but now have a slightly underactive thyroid.
I have under active and on 100 Levothyroxine I have just been diagnosed with IBS and Rheumatoid Arthritis my gastroenterologist put me in touch with dietician and he suggested FODMAP diet it has really helped suggest you google it as too lengthy to discuss on here xx
I'm the same was diagnosed in dec 19 with hyperthyroidism I dont have a clue what's happening to me i feel sick all the time but i never thought it could be linked to my thyroid, I thought it was a separate issue and have not said to my doctor about I've been trying to change my diet
I’ve never been given information about optimal vitamins from a medical professional.
Sadly I doubt any of us have. Doctors aren't taught anything about nutrition and they almost always work on the basis of "if it's in range or even quite close to being in range then it's okay. If patient still complains they obviously have some form of mental illness and need anti-depressants and/or CBT".
I agree, I feel for everyone here! My endo has never once discussed diet with me..so it's up to me to do the due diligence.. I feel for all here suffering with some kind of thyroid issue.. men oddly just came into the thyroid field recently.. in the last 10 years or so.. kind up there with male breast cancer....
So many Women get mis-diagnosed with depression. "Here Take this anti depressant & all will be right with the world".. I call B/S... Never let a doc do that to you.. you do have a choice.. Part of the reason I'd rather keep my insurance than let my country go to full on socialized medicine.. Period...Heard too much bad about it.. Never really any good, and I've learned that on this site more than anywhere else... I could be wrong...Been known to happen, but as I have said in a prior post.. it seems that most here are from the UK.. If I am wrong I apologize... hugs n good night
Unfortunately Larai, here in the UK , thyroid treatment fails so badly , and we are at their mercy, all to do with government budgets....! There should be more of an outcry from thyroid sufferers..... because ultimately, if we’re not receiving the correct treatment , inevitably, it will cost the NHS more due to the inevitable ill health that will follow.
Thyroid treatment isn't great. Neither is menopause treatment. But some of the other stuff is brilliant. I hope to God we don't end up with your system of insurance because it's barbaric to those who can't afford it. The poorest homeless person in the UK will get the same surgery or medical care as the richest, and most of it is excellent.
Also, the Stop the Thyroid Madness site is mainly American based, so it's not that you have better treatment, just that Americans with issues and self-treating drift towards that site and English to this one because HealthUnlocked is actually associated with the NHS.
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Do you know if your hypothyroidism is due to autoimmune thyroid disease?
Ask GP to test vitamin levels
You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Is this how you do your tests?
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 is in top third of range and FT3 at least half way through range
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
First let me preface this with I was born w/out a thyroid gland I am considered congenital hypothyroid/central thyroid.. so I have NO clue on what is considered "normal", so I am on the polar opposite end of the spectrum.. basically, I am an Over medicated hypothyroid.. my endo is workin on getting me at least half assed right.. along with taking 50,000 units of vitamin D2 every other week.. I take 500 mg of magnesium a day..and potassium 99 mg every other night...keeps me moderately normal bowel movement wise...I am also a breast cancer patient, and so take an anti hormonal med to keep the cancer from coming back, which causes serious head aches and bone pain as well as fatigue...But I will say, If you have an endocrinologist hammer him for every thyroid test known to man and don't take no for an answer... if he/she tells you no.. try to get a new endo.. you do NOT have to take their advice..your treatment is YOUR decision Period.. you are in a very good group here and I am sure that you will get some great advice! Also, Do your due diligence online, there are plenty of places out there to get the names of the tests that should be done.. all of them.. as well as doing some due diligence on the endo.. client ratings etc.. if you like them cool if not keep searcing til you find one you could possibly have a working relationship with.. I also realize that a Lot of folks are in the U.K. so not sure what all is available to you.. but if you are here, you have internet.. read up hon.. and hope you find what you need!
Hi, Lora7, I’ve only ever been prescribed T4 ( Levothyroxine) as T3 not tested under UK NHS. .... ive just had a private blood test done with Medichecks and awaiting result.
really good advice, thank you so much. You’re so right ,
Love the bit about the hammer treatment for the endo! 😆
I would love to follow that up but I’m no longer under his care as was discharged back to G.P. as I was deemed stable, that was quite a few years ago, I’m sure he has retired by now.
Prescribing vitamin D2 seems to be mainly a US phenomenon based on what I've read in posts on this forum. Almost everywhere else Vitamin D3 is far more common.
Those anti-breast cancer medications are a well-known cause of osteoporosis. Good that you are taking Vitamin D, but you also need to be taking co-factors. Vitamin K2 MK-7 will assist the Vitamin D to route your dietary calcium to your bones and teeth, avoiding soft tissues such as blood vessels and breasts. In addition, Magnesium works with Vit. D. I also take Zinc.
I can also chime in and confirm I was just given Levothyroxine and told to take it forever! Didn't question anything at the time! I've learned more from this forum in a few months than I have in over 15 years of gp/endo visits. It really is a great place where selfless people just want to help others. A great community.
I'm sure you'll get to the bottom of your issues with the help from the forum.
I'm not really too clued up with diet, sorry. I have tried eliminating gluten for 4 weeks recently, so I just have some eggs and gluten free toast for breakfast, but I know some people can be affected by dairy too. my bloating issues have definitely improved, but I have started probiotics too. And I'm pretty sure I have SIBO, so I've been taking oregano oil for that. Might be worth trying an elimination diet of you're having any digestive issues.
Thank you so much , I agree this is a wonderful, and helpful site. And like you I’ve been in the dark for so many years , and learned so much within the last few weeks.
I joined this because of my mother. She had similar reactions having the same treatment as you, same drug. She had it for decades, developed gut problems, blood pressure elevated, irregular heartbeats and chronic diarrhea. This drugs are immensely toxic to the liver because our bodies do not function with petroleum chemicals, or better, any petroleum chemical. Her liver collapsed, giving her jaundice, itchiness, dark urine. It was cancer and died en a month. Please, listen to there talk form a series. This man, Sayer Ji, explains wonderfully toxicity involving related subjects with priceless information for you. I think it is airing only today. Whatch it. This will lighten your mind: regeneratemasterclass.com/e...
Thank you. You are very welcome. Try to find natural cures for your problem instead of surrender to a daily deadly, toxic pill a day. Your liver is the one you need to get clean. These videos can introduce you to a new opened window.
Hi there vocalEK, In general, pharmaceuticals have petroleum based fillers. The body is not made to recognize such substances. Most of them have corn, soy by-products. The cheap fillers. This is what I have learned trough seminars over the last few years. Any synthetic reproduction of a compound from nature are toxic to the body and are stored in the fat tissue. The more adipose tissue you have the more toxins you need to get rid from your body before is too late. Cheers.
RedApple, no. I had a temporary sluggish reverse T3 in 2016 which was cured by erradicating all sources of gluten in food recommended by a holistic, multi funtional doctor who saw a specific antibody marker in my blood that was out of range. I actually joined this group to see if I could gather some more information about standard allopathic approach to Hypothyroidism to help understand my mother `s symptoms, because where she was living, there was no access to natural treatments. She ended passing away from extreme toxicity in the liver. Intra-hepatic bile duct cancer. She had Stomach problems also. The thyroid-stomach connection. She was using Levo for decades. I have to add (I've forgotten) that my sluggish reverse T3 returned to normal by also balancing my Iodine intake. It was a little higher than what it should have been. I`m not sure if gluten was a strong contributor to it.
I think the long term administration of the drug, greatly contributed to her condition. A very slow process of secondary problems were observed. Permeable GI where all toxins go through the intestinal wall to the blood stream. Bad chronic headaches and diarrhea for years. High blood pressure which will eventually happen after long term administration of pharmaceutical drugs. (started taking a drug for that too) She always ate very healthy foods from the earth and exercised moderately even when she felt sluggish. I think these helped her to survive longer. One day she was with pain in the rib area, turned yellow, went to the hospital, got more drugs there, performed a big liver surgery, more drugs for pain after surgery that was useless. Drained the bile unsuccessfully. After these interventions, of course, the body is trying to heal the wounds and with an immune system already compromised the cancer took over quickly. No real help from regular doctors because they just dont learn other things than drugs or surgery. No high dose vitamin C IV, coffee enemas, leatrile IV , infrared sauna just to name a few...she left in 45 days.
Thyroxine itself is a hormone produced in our body, as you know. The synthetic version made in a lab is what we all know as pharmaceutical drugs. Please, read what i replied to vocal EK.
All pharmaceutical drugs are toxic to the body. It has a slow poisoning effect. Thyroid malfunction as any other malfunction of an organ is a consequence of underlying deficiencies that make the body start failing in working properly. Radical changes oriented by a holistic approach is the real cure. We grow believing in the magic pill, in the allopathic aproach as the solution. Look for help with an expert in natural funtional professional . Allopathic approach is not a solution. It carries more malfuntion of the body later on. It poisons the body slowly. It is not the way. The liver, slowly, gets overloaded with toxins that can have life threatening outcomes.
Not taking thyroid hormone, when needed, is a certain route to extreme unwellness.
There is no way of treating people who have no thyroid other than taking thyroid hormone(s). There are no radical changes, oriented or not by holistic approaches, that are the "real cure".
Stirring up disdain and fear of levothyroxine is hardly considerate of those who have no option but to take it.
Hi helvella. This was just a reply to a direct question that Contra21 asked me, based on an answer that I provided to Golli who appreciated my opinion and the experience I had with my mother with hypothyroidism. I am not generating fear or disdain. My answer was neither related to the specific condition of someone that has had its thyroid removed nor promoting that, in this specific case, a holistic approach is the real cure. Thanks.
Thyroid malfunction as any other malfunction of an organ is a consequence of underlying deficiencies that make the body start failing in working properly. Radical changes oriented by a holistic approach is the real cure.
You replied with the above to Contra21. Contra21 had RAI (and now regrests it). I find it difficult to see from that what you are intending to suggest Contra21 should do other than some holistic approach.
Just what holistic approach is going to cure Contra21 ? The way you replied reads like a threat of liver damage if Contra21 takes levothyroxine.
Hi again helvella. I answered to Contra21 , exclusively, one only question which was: Thyroxine is toxic.? It`s unlikely that I would know the health condition of anybody in the group that asks me a question related to what I wrote to somebody else. It will be hard to participate and/or try to help people if you were required to know in advance what condition they have, so that we don`t do harm.
helvella, this video is an episode of a series Called Regenerate Yourself, by Sayer Ji. Everyday this week he is showing one subject that is in the air for 24 hours . I sent that video to Golli to help her at that time. The series continues. It is not "locked it away" It just expired. If you are interested you can watch the current episode. It is always beneficial to educate ourselves profoundly with new discoveries and research being exposed by honest and helpful professionals like Sayer Ji. The Module 5 is current today. regeneratemasterclass.com/e... Amazing information always. Thanks.
If I can't watch it, it might as well be locked away.
Afraid I haven't got 36 minutes to watch it right now. (One of the reasons I detest video as a way of distributing information is that it demands attention and inhibits the going back and forward that is so easy with well-written textual sources.)
Helvella, this is a series of episodes that the author offers as a chance to instruct the interested people on a certain subject. You subscribe and receive the access for free and each Module is available for 24hours until the next starts. You can stop, pause and rewind during that day. If you prefer, you can buy the whole series or read his book. Any learning, including a well-written textual source, as you wrote, it demands attention from those that are interested.
If this information is so mega important, why do the videos expire so quickly? I consider this sort of approach as being no better than a drug seller giving me a free dose of whatever drug he wants me to get addicted to. Hook me in and then rip me off for whatever it is he wants me to buy.
Just a though....check for parasites. See an infectious disease doctor functional medicine doctor. The gut problems could be a cause from this. I have Graves and terrible gut issues. Had a colonoscopy and endoscopy all normal except gastritis. Lost a ton of weight. Went to a Infectious disease doc and found a common parasite. 90% of people have it and no symptoms. CDC says 1/3 of US has it and most don’t know it. Worth a check. Read it can cause thyroid problems and whole host of diseases and gut issues!!
E histolytica is just one and it is diagnosed using a sigmoidscope. You can get it from drinking water infected or food. Very scary because I travel a lot. There are many other types of amoebas out there and people are not getting diagnosed correctly. My GI dismissed my thoughts of having one and just said I had gastritis. Went down to 106 lbs. I was scared.
Went to a doctor in NYC people fly in from all over the world to see because they to go around from doctor to doctor looking for answers after a colonoscopy and endoscopy come back negative but still have stomach issues and pains. He tests with using an old school sigmoidscope and gives you results in 24 hours. He does this test himself. Doctor said most labs miss the results because the parasites die before they get to the lab. These parasites can cause other diseases if not treated and live in you for years. some people live with no symptoms at all. I’ve read autoimmune diseases and parasites can be related.
Below are a couple of links from others experiences. There is a ton more Information out there. I just knew when my Graves and thyroid Levels improved but still had other issues and felt something was causing it. I CT scans, MRIs, endoscopy, colonoscopy, sonograms and biopsies. All that came back was Graves and Gastritis. There was one woman who had every symptom I had and couldn’t believe it. Takes time to recover but to get it out of your system is imperative to ensure no more damage. I’ve only been diagnosed 3 weeks and still recovering.
I do have TMJ pain pretty severe from teeth grinding caused by all this too. Parasites can cause teeth clenching and I was doing it in my sleep. Now I have a mouth guard.
I hope to help someone find answers a lot more quickly than I did. I have been sick over a year. This may not be everyone’s problem but you need to check. They are more prevalent than ever today and missed by almost all doctors. I am on the road to recovery and hope others can too! It’s been awful.
Thanks for this very detailed reply. I am going to pass this on to my sister - I think there could be a parasite issue going on in her case - there could be one going on in my case - we both tooth grind at night. the amy myers link was brilliant - I checked off 9 of the 10 symptoms and some of the possible causes would also apply in my case. Will look into this further. Thanks for raising this interesting and helpful issue - I wouldn't have been aware otherwise.! You might have helped at least 2 people!!
A comprehensive stool analysis test was invaluable to me.
You can go through a specialist or do your own.
I found out I had no stomach acid l, no probiotics, candida an overgrowth of a serious bacteria but I’d no parasites thankfully.
Mine also recommended which antibiotics were best for me, which I was immune to together with other natural products too for example some essential oils and supplements.
Sorting out this mess saved me so much money and now my absorption is far better. The hardest cure was candida, the rest v easy to fix.
So no irritable vowel is just an umbrella of conditions. Most are easy to cure.
I have suffered exactly the same as yourself and now find going from being over active initially to under active I have great difficulty with loosing weight. I have been told by my Dr this invariably happens when you have RAI treatment! I just wish I had been told this before having Iodine treatment I know I would have gone down a different route. Being on Heal th unlocked gives you some comfort that others suffer same symptoms.
My wish also May, given what I know now , I would never agreed to having RAI treatment but I trusted the endo , after all they are supposed to be the specialist s!
It’s such a battle trying to explain all the horrible symptoms, which you know are connected to thyroid issues only to be fobbed off
Gut problems are almost always a result of having too much or too little stomach acid. A good way to find out is to try taking a Betaine HCL with Pepsin supplement, if you take one or two capsules and experience no discomfort or burning sensation in your chest or stomach then you likely have low stomach acid. If, however, even taking 1 capsule gives you acid reflux, heartburn and/or upsets your stomach then you have too much stomach acid, which there are a lot of supplements for in the market...like antacids, etc.
I agree that people with Under-active Thyroid are underestimated and the condition is overlooked by Health Profs. I’ve been referred to an Endocrinologist. I have no idea what to expect! Under-active thyroid plays havoc with our general health , but it’s not really acknowledged much.
I hope your Endocrinologist is a well informed professional, who will give you all the help and knowledge you need to deal with your specific symptoms. Write down everything that’s a problem for you and take with you.
Best of luck with your consultation, Let us know how it goes.
Thank you. The Doctor has written a letter to them with the symptoms. I’m waiting to hear from her. I’m not sure what’s going to happen. Thanks. Same to you, I hope you get the best treatment.
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