hypothyroidism?: I need serious help from someone... - Thyroid UK

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hypothyroidism?

cerena11 profile image
46 Replies

I need serious help from someone who understands thyroid issues. I've been dealing with the issue of not being able to lose weight no matter how hard I try; how healthy I eat and how active I am, I'm always cold, crazy acne breakouts, very moody. and recently I've been noticing a lot of fat gain in a short period of time. After years of visiting doctor after doctor, and multiple dietitians, only to be constantly turned down and told that I was a healthy weight and didn't need to lose any, I finally demanded to get my thyroid checked - So I did and my levels are: TSH is 1.03 (0.34-4.82), T4 is 9.6 (10.0-20.0) , and T3 is 3.1 (3.5-6.5). Do I need to be treated for hypothyroidism? My doctor said my levels aren't too bad and I don't absolutely need to, but could start taking levothyroxine.. do I need to? will it help my issues (mainly of not being able to lose weight) ? any input would be extremely helpful

I forgot to add that I am also anemic and am currently also working on getting my iron levels up. I was a vegetarian for about 8 years and didn't even realize how low my iron levels were until getting them checked about 6 months ago. I had a hemoglobin count of 82 (117-149) and ferritin of <5 (12-83). I started taking ortho iron as directed by my doctor and in the last 3-4 months I have raised my levels quite a bit. I will post a photo of my hematology panel

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cerena11
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46 Replies

Hi.

I could be you, haven't lost any significant weight in 3 years despite following slimming world and regular trips to the gym(6m\8lbs) I'm knackered, my feet are cold, periods are horrendous, irritable isn't the word sometimes, list goes on but my dr will only test TSH. Just wondering was it your local GP that did all the relevant tests or did you go private ?

I'm interested to see any replies you get to your post.

Good luck x

cerena11 profile image
cerena11 in reply to

I too have been experiencing strange periods but mine have just been very irregular - normally over a month apart. this is all so frustrating! I just want to get to the bottom of it. My family doctor gave me a requisition to go to a nearby blood lab to get the tests done and I've been getting them done every few months. Thank you, hopefully the both of us are able to figure out what's going on here!

greygoose profile image
greygoose in reply tocerena11

What is going on, cerena, is that you're very, very hypo. No Wonder your doctor wanted you to take Levo, you really do need to. And that's why you can't lose weight. It has nothing to do with what you're eating.

However, it isn't just a thyroid problem, is it, because your TSH is low normal, and doesn't correspond to your low FT4 and FT3. It's more like a pituitary problem because TSH is a pituitary hormone, and the pituitary isn't secreting enough TSH to simulate your thyroid. Did you doctor say anything about that? You really ought to see an endo, because pituitary is too complicated for a GP.

But, you must start the Levo as soon as possible or you're going to make yourself ill.

cerena11 profile image
cerena11 in reply togreygoose

Thank you for your response. My doctor said something about my pituitary and I got it checked during my last blood test but I'm pretty sure she said everything was normal. I have prolactin on my current lab results which is at 5.9 (2.2-30.3)

The reason I haven't started the thyroid medication is because of the number of reviews I've read describinfing the negative side effects of it, one of them being weight gain. I also read that once you start taking them, you can't stop, and I'm not sure I want to be on a medication for life. My doctor told me that I'm slightly hypo but it's nothing serious, and told me it was up to me whether I went on the medication or not, so what you're saying is new to me

dgleds profile image
dgleds in reply tocerena11

If I didn't take thyroid meds..id gain weight pretty quick...and feel pretty depressed after a while...and if you left it without treating it, it can mess up your heart, give you diabetes too, and cholesterol problems...I hate taken meds for things, but this is the one med I make sure I take...

Gismo333 profile image
Gismo333 in reply togreygoose

I wouldn't necessarily say it was a pituitary problem. Blood tests are a guide. I would never recommend T4 without T3. Diet has a lot to do with everything as it can block thyroid hormone, change the diet and it can make a world of difference to the person suffering.

in reply togreygoose

Grey goose is dead- on correct. Follow her advice ASAP!

Then, find a compassionate Endochronologist and have them (him/her) stay on top of your thyroid, pituitary, hormone levels WITH you. Have your labs done every 6 months ( or however long your Dr. says)..... Keep in touch with your TSH, T3 & T4 levels. And try to always know the thyroxine or sunthroid level is WHERE it SHOULD BE!

Most of all... Remember ALWAYS: YOE ARE NOT ALONE!! XOXOXO

Gismo333 profile image
Gismo333 in reply tocerena11

I would like to ask your age, near perimenopause? Sorry if you are only young but it can happen at anytime.

cerena11 profile image
cerena11 in reply toGismo333

I am 19

in reply tocerena11

Serena, you are lucky to have your health on your side; being only 19.. Get yourself a good specialist (Endochronologist) and start getting all your levels straightened out, and you' be got an awesome future with an invaluably great quality of life.

Taking one little. Thyroid med each morning an he or 1/2 hr before you eat breakfast will be the only 'inconvenience' you'll have since you'll take it for the rest of your life!! Getting your blood checked every so many months - to make sure your thyroid's going great - will be the only thing (besides TAKING your med in the am) that'll need your commitment.

You're already on

the right track.... By asking questions and educating yourself.... You're going to be just fine! Great, even!!! Never stop asking questions !!!

lesleyjehan profile image
lesleyjehan in reply to

Your Levothyroxine should be taken with a full glass of water on an empty stomach? ONE HOUR before or TWO HOURS after food. You should NOT take at the same time/with calcium/dairy products and you should leave FOUR HOURS either way before you have any other meds.

This is what I've been told on ALL the thyroid groups I go on.

It interferes with the absorption of the drug.

in reply tolesleyjehan

Hi. Yes, I agree with you. That's how you're supposed to take levothyroxine or synthroid....thanks for sharing!

Gismo333 profile image
Gismo333 in reply to

Hi change your doctor. Thyroid UK have doctors that are a lot more up to date with thyroid matters and will prescribe NDT if you need it.

I don't do well with bread, cakes, pasta, rice or potatoes, knock them off and see. I feel less tired and although I love bread, I try not to eat it because it makes me feel awful

Dear cerena,

It seems that you have a good dr if he will treat you with a not terribly high TSH and also if he will test t4 and t3. Has he also tested your ferritin, vit d, folate and b12 as thyroid medication might not work very well if any of these are low. You certainly need to be treated and your t4 and t3 will need to be in the upper part of the range before you will feel better. It takes time so be patient but you are lucky you have a good dr wanting to treat you. Levothyroxine should help you lose weight although it had the opposite effect on me as it made me hungry all the time but there are other medications if the levo isnt right for you although you may need to go private. Levo is good for most people.

cerena11 profile image
cerena11 in reply to

thank you for your response. The last time I got my ferritin checked it was at <5 (12-83), and I haven't had vit d, folate, or b12 checked. The only reason I haven't started taking the levothyroxine is because I've read many reviews of it having negative side effects, one of them being weight gain. I also read that once you start taking it, you can never stop which isn't something I want to have to do for the rest of my life

goyettemi profile image
goyettemi in reply tocerena11

Vitamin D can be crucial to hypothyroidism as it also has a hormonal effect on the body. I've been diagnosed with hypothyroidism sixteen years ago, and I've been going up and down with over 60 lbs. I have not budged in weight loss for over two years, however I easily could gain weight. I started going on a gluten-free diet and exercising every two days. I'm also taking 6,000 IU of Vitamin D, and 2,5000mcg of Vitamin B12, and I'm down almost 10 lbs since June 1, 2015. I have so much energy, I don't even know what to do with myself. The reason why I posted on this comment it's because Vitamin D and Vitamin B12 has helped me tremendously, and I do hope that this could help you. Please do speak to your doctor before trying out new options, especially if it consists of taking vitamins and/or new medications. Good luck!

1133 profile image
1133 in reply tocerena11

It's not actually true that you can never stop taking thyroid hormones once you start taking them. It's only true if you don't have a thyroid, like if it was surgically removed, or completely destroyed by the immune system. People (the medical establishment) say that when they're not interested in digging down to the root cause of the thyroid disorder. Once the root cause is corrected, thyroid hormone supplementation is contra-indicated. So, if all a person wants to do is take a pill to manage symptoms, without digging down to the root cause, sure - that person is best off taking the thyroid hormones for life. But if a person wants to treat the root cause, then that person will eventually be able to stop taking the thyroid hormones.

As for weight gain - I've learned that you have to give up the fear of that. Let the body do what it needs to do, and if weight gain is part of that for a time, it is what it is. Let it happen, don't fight it. If you want to know more about why I write this, please feel free to click on my profile, and read through my previous posts. The body always has to balance out, and sometimes, weight gain is required while a pendulum sways before it can come back into balance. From experience, fighting the process always makes it a lot worse. In my case, I gained 60 pounds after dropping over 100, on an extreme low-carb diet, which left me malnourished, unwittingly starving, and thyroid & metabolism badly damaged. The 60 pounds came back on while I was still on my paleo/ketogenic/very low carb diet - and the more the weight came on, the less I ate. Wrong move. I should have eaten more, but I didn't know any better at the time. I should have added carbs, sugar, and salt, but I didn't know any better at the time. I had a series of traumatic events happen within weeks and months of each other, a couple of years ago, and my adrenals couldn't keep up. Despite eating even less food, I put on another 100 pounds after all the traumatic events occurred. I was not taking thyroid hormones at the time. Eventually I started taking nature-throid - tried various dosages - and while I did notice a slight mood improvement, it didn't do anything to stop the weight gain. Eventually I came across the work of Ray Peat (raypeat.com/articles/) and Matt Stone (amazon.co.uk/Diet-Recovery-... - GET THAT BOOK, it's free to download for kindle and was LIFE SAVING for me) and Dr. Diana Schwarzbein (amazon.co.uk/Schwarzbein-II... - and I began to understand how important it was to eat. And I mean EAT. I had to start eating about 3800 calories a day in order for the weight gain to stop and begin to reverse. If I ate between 2500 and 3800 calories, the weight would just stick where it was. If I ate less than 2500 calories a day, the weight gain started back up. I realize this is scary to contemplate, and anyone doing this may gain a ton of weight in the process. The point is that sometimes that's what the body needs to get back into balance, and that's when healing can begin. It's important to remember that it's not about losing weight to get healthy - it's about getting healthy so you CAN lose weight.

My point in telling you all this is so that you will not be afraid to take the thyroid medication out of fear of having to take it for the rest of your life or gaining weight. Gaining weight isn't the end of the world - and it can actually be the beginning of the way out of debilitating dis-ease. Don't let the fat phobic mass programming keep you from what you need to do to be healthy, like I did. You might even possibly find that once you face that fear and start taking that thyroid hormone, the weight starts coming off. And I hope that will be the case for you. In any event, I wish you full recovery, health, and happiness.

lesleyjehan profile image
lesleyjehan in reply to1133

I found what you wrote very informative 1133 and although I follow a low carb, high fat, wheat free diet with next to no processed food I don't calorie count or weigh anything and eat if I'm hungry so I know the calorific part of my diet is higher than ever before. I have just lost 6 stone in 5 months! Plus I am now maintaining a loss of 4-6 lbs per week. I have NEVER before in all my 60 years lost weight when I tried and I was always miserable! Now I can eat whenever I'm hungry and it's a way of eating I can keep up. I also practice portion control and find I don't need to eat as much as my EYES tell me I need in order to feel full.

I hope cerene11 will be able to see my reply to your post

1133 profile image
1133 in reply tolesleyjehan

Hi lesleyjehan, I'm so happy for the progress you are making. I do know exactly how fun and exciting that feels, and I don't mean in any way to rain on your parade, but rather the opposite. I hope to help keep your parade going. Please do some research on thyroid and carbohydrate intake. Even Dr. Atkins wrote that staying too low carb for too long shuts down thyroid function. Sadly for me, I did not know that before I began. As you get to a plateau, please remember to try out what I said - eat a lot of carbs when that happens - and see what happens. There is a ton of information out there by a whole lot of people - dieters and experts alike - testifying to the fact and giving the reasons why we need to increase our carb intake as we lose weight. I hope you will consider my own testimony as something to take seriously for your own well-being and weight loss maintenance.

cerena11 profile image
cerena11 in reply to

sorry - ferritin is actually at 18 (15-130) on newest lab report. doctor wants me to aim for >50

Marz profile image
Marz in reply tocerena11

...so how are you increasing your Ferritin ? I think it needs to be higher than 50 :-)

lesleyjehan profile image
lesleyjehan in reply toMarz

I was put on Folic Acid to increase my Feritin which was 17 and told I needed to be at 50.

Marz profile image
Marz in reply tolesleyjehan

Folic Acid is synthetic - maybe look at methylfolate v Folic Acid. FA needs to be half way in the range.... :-)

lesleyjehan profile image
lesleyjehan in reply to

There is, apparently, a BIG difference between being in 'normal' range and being 'optimal'.

Dear Cerena,

You have an underactive thyroid and will have to take some kind of medication indefinitely if you want to be well. You can stop the medication if you want but risk being ill again. There are different medications on the market that you can buy yourself or get prescribed privately if willing to travel but all medications have side effects and levo is a good starting point. You can always change, like I did, if it makes you overeat. I am really impressed with your GP.

Buzzer profile image
Buzzer

From what I know your TSH is ok but T3 and T4 are low they should be in the higher end of the range.

We all have different symptoms and if yours is a weight one even with the thyroxine you MAY struggle to lose but it will be possible.

eeng profile image
eeng

Weight gain is not usually a side effect of Levothyroxine, in fact weight gain can be a sign that you NEED Levothyroxine. It is true that people taking Levothyroxine struggle to lose the weight they gained before they started taking it, and that if you don't take enough Levothyroxine (doctors very often under-prescribe) you may well continue to gain weight or struggle to lose it. However this isn't always the case (in fact a few people have the opposite problem and can't keep weight on when they are hypOthyroid). Once you are adequately treated your weight may start to resolve itself. Certainly by not taking Levothyroxine when you so clearly need it you will struggle to lose weight.

You will probably be taking Thyroxine for life (unless they discover something to heal your pituitary) but when you look at the hypothyroid symptoms list you can see that there are a lot of minor and not-so-minor conditions that should improve (including period problems and fertility issues). Even on a purely financial level it makes sense - you never have to pay for another prescription, ever!

Ruthi profile image
Ruthi

this is a classic case of the 'reviews' or rather complaints not telling the whole story. Lots of people who are hypothyroid end up not being fully treated, and continue to struggle with their weight. Its a problem with treatment, not Levothyroxine. Some people on Levo with low normal, or even mid normal levels of thyroid hormone still struggle to lose weight, but its not the medication that is causing the problem.

Your case is unusual, in that its not the thyroid gland itself that is under-performing, but the result is the same, you don't have enough thyroid hormone in your system. Its absolutely essential to every process in the body, because it is the master hormone controlling metabolic rate in every cell.

Don't worry about having to take it for life, it is not addictive. You don't have to worry about eating for the rest of your life, and thyroid hormone is as essential!

Take the stuff, and ask for the tests mentioned above, and ask for a referral to an endocrinologist.

Looneytunes profile image
Looneytunes

Are you very tired and et very little but pile on the pounds anyway and are you very slow to do things in general?

Dear Cerena, I started levothyroxine about 10 months ago; I had symptoms for about 2.5 years gradually getting worse.

I started on a small dose to begin with and had regular blood tests every 6 weeks, now my dose is correct and my hair has stopped falling out, my periods are normal and regular and I am starting to lose weight. Although its a pain taking medication everyday, it has made a huge difference to me personally as I was losing a lot of hair, I couldn't lose weight no matter what I tried, I was very tired all the time and my periods where very heavy and exhausting.

I am back to normal, I hope you manage to sort it all out.

Gismo333 profile image
Gismo333

Hi even with bloods like that you still may need thyroid hormone. Your FT4 is low and your FT3 so I would say yes. However, I would ask your doctor for levothyroxine by MercuryPharm which is the best and also some liothyronine T3. You need the T3 in case you cannot convert all the T4 to T3. I hope he doesn't start you on a silly dose of 50 mcgs T4 as it's not enough for the shortfall which your body will lose when taking thyroid hormone. Most doctors start with 100 mcgs and 20 mcgs it all depends on what doctor you have.

As for diet then reduce all ready meals and meals you don't know what is in it. Eat basic food meat, plenty of veg, don't overdo fruit. Never eat porridge as it slows down the metabolism, not too much tea as it contains fluoride and this can block thyroid hormone. Take good metabolic exercise, walking is fine but keep it fairly fast if you can, you need to raise your pulse and keep it there for 20 minutes.

All this will help your weight loss and as you are taking the thyroid medication your symptoms should go. Get a symptom sheet from the net and print it off. Highlight your symptoms and keep it and date it. As you start to take your medication, exercise and change your diet if it needs changing then your symptoms should start to go and weight go down.

If he queries the TSH then tell him I have no gland, mine is 0.01 I'm on T4 and T3 and I'm fine. No hyper symptoms at all. It all depends on how much thyroid hormone enters the receptor sites on the cell not how much is circulating in the blood and how many messages from the pituitary gland.

Clutter profile image
Clutter

Cerena, you have secondary hypothyroidism, ie a healthy thyroid gland which isn't receiving sufficient TSH stimulus to produce thyroid hormone. You will need to take Levothyroxine or some form of thyroid hormone replacement for life. Levothyroxine takes weeks to be absorbed and metabolise so you may continue to experience weight gain until you are optimally medicated which can take several months. The longer you leave it the more weight you will gain as your metabolism slows and it will be harder to shift.

80% of people do well on Levothyroxine. You don't see them posting as they are well and don't need the support of a thyroid forum. Those not doing well are often inadequately replaced, so not the fault of Levothyroxine. The 20% who don't do well may need T3 in addition, T3 only, or NDT. NDT is rarely prescribed and usually self funded.

Lucky14 profile image
Lucky14

Hi I ive been on levothyroxine now for 12 years. I'm currently on 200 a day. And when correctly dosed do not put weight on and can actually lose it if needed. Feel much better being on it than I did not being on it. 👍

lesleyjehan profile image
lesleyjehan

Hi I have Hypothyroid along with several other serious health issues and I'm also severely disabled so can't exercise. I am on 275mcg of Levothyroxine. BUT I have lost 6 stone in 5 months by following a LOW CARB, HIGH FAT, HIGH PROTEIN, LOW FIBRE, NOTHING PROCESSED, LOW SUGAR, GLUTEN FREE diet....phew! Sounds bad but it's SUCH an easy diet and no weighing, calorie counting or anything like that.

I use Stevia instead of sugar and Celeriac or sweet potato instead of the usual ones, lots of veg and meat/fish. I stay AWAY from bread, pasta, rice, ordinary potatoes etc anything high carb although I do occasionly have a treat! And my one sin per day is a normal sized Mars bar. :-)

I use lentils and barley where pos and Natural FULL FAT Greek Yogurt, DOUBLE CREAM, REAL BUTTER and Oil Seed Rape oil for cooking and marinades. This diet was recommended to my BinL for his heart condition.

I am maintaining a LOSS of 4-6lbs per week WITH NO EXERCISE. If I'm hungry I eat.

Also, I am being monitored by a dietician who was VERY sceptical of this diet but who has turned around and said carry on because you are doing sooo well!

BTW, I would certainly try Levothyroxine because if you don't you will be putting your body under stress and could end up with multiple serious illnesses like I have? I was undiagnosed for YEARS. There is an EXCELLENT closed group on FB but I don't know if I can name it here?

Good luck and please let us know how you get on whatever diet you choose.

guysgrams profile image
guysgrams in reply tolesleyjehan

lesleyjehan was this diet something you came up with or is there a specific name for it? Thought I would inquire as I need something to help me with not only weight issues but feeling better too. I have found over the course of the last few months that eating certain foods is not agreeing with me any more.

lesleyjehan profile image
lesleyjehan in reply toguysgrams

It's been a mixture of several recommended diets. I was extremely insulin resistant and experienced problems on the strict low carb, high fat, high protein diet that my BinLaws Cardiologist advised him to go on so introduced low carbs like Celeriac, lentils, barley etc also I was told you need carbs for brain function? I'm not very good at calorie counting/weighing or following rules etc. so I just basically eat what and when I want but am just mindful of portion sizes and try to steer clear of high carb foods. Oh and I don't use real sugar, where pos I use Stevia or honey nothing like sweeteners or the such. I have a 2 banana smoothie for breakfast made with coconut milk, Greek yogurt and ice. Lunch is 1-2 rounds of spelt bread with lashings of butter and a little jam, smoked fish, meat or pate etc for lunch. Or soup when it's cold.

Main meal is meat/fish with celeriac dauphinois (yummy!) or we mash it or roast it with cajun or other seasonings on it, veg's and we love tasty sauces/gravies.

Supper is a pudding like cheesecake, (not many carbs,) trifle, pavlova, little or no flour cake, or meringue puddings, mousses etc.

I hope this helps you.

1133 profile image
1133 in reply tolesleyjehan

That's the exact same diet I was on which led to the destruction of my metabolism. I too lost 4-6 or more pounds per week, without any exercise at all. And then the weight started coming back on. Please, when you start to plateau, don't make the same mistake I did, which was to reduce carbs and calories even more. Please add calories and carbs as you drop the weight. I dropped nearly 125 pounds on the diet you are on. I gained 160 back while on that same diet, and have spent the better part of the last year having to eat 3800 calories a day in order to stop the weight gain, because I didn't know enough to eat more calories and carbs when I needed to. I wouldn't wish this, what I have gone through on anybody, so please take this seriously.

humanbean profile image
humanbean in reply tolesleyjehan

Barley contains gluten, so I would describe your diet as wheat-free rather than gluten-free.

Lots of people try wheat-free first and only go gluten-free if they still have problems. I think it is a good idea myself. Why cut foods out of the diet unless it is absolutely necessary?

lesleyjehan profile image
lesleyjehan in reply tohumanbean

Thank you for pointing that important fact out to me! I get so forgetful and just because I eat mainly GF bread etc I say I'm GF. in future I shall do my best to remember I'm wheat free

Megan_back profile image
Megan_back

Your tsh looks okay but both T4 and t3 are low so yes I think you need to be on levothyroxine.

It can help with the diet once your have the right level of thyroxine in the blood but don't rely on it. For me shifting the weight has been a struggle even when ranges were optimal but it certainly helps when you follow a proper diet to be in range - but don't be disheartened if it doesn't go off as fast as it went on.

doluph profile image
doluph

Hi

I have been on Levothyroxine for 10 years, does help with a lot of the symptoms but I put 4 stone on in a matter of months and that was 10 years ago. Since then I haven't been able to loose any of it despite much exercise and 'being good'!!!

Good luck

sa1234 profile image
sa1234

Hey Hun,

how are you doing?

Taking Levothyrox is not going to make you feel any better because you need to find out what's causing you to gain weight and stopping you from loosing weight.

You should see a Naturopathic doctor or a Functional medicine.

I know a Functional medicine health coach in UK.

If you like you can talk to her.If you feel satisfied,start working with her to restore balance to your life.

I hope my answer was helpful to you :)

jimh111 profile image
jimh111

Were you dieting when the blood test was done? A normal TSH with low fT3 and low fT4 is typical in patients who are on restricted calorie diets. It's the way nature protects us during periods of famine. This is why it is often so difficult to lose weight, the metabolism slows down to compensate for reduced food intake.

If you were on a low calorie diet then you need to switch to a moderate diet and give it some time before you have another blood test.

Another cause is depression, this can lower your thyroid hormone levels and of course hypothyroidism can cause depression.

If neither of these explain your situation then it looks like you have impaired pituitary output and this should be checked out by an endocrinologist. The only other explanation of your blood test results would be if the test was not accurate. If your doctor did the blood test then it will be reliable. I don't trust home test kits.

astroscopesuk profile image
astroscopesuk

From what I now understand of the thyroid. This little glad kick-start s your whole body. Untreated it can.kill.you as it's slowing down all.your bods functions

As it's probably dying itself. You really should take levothyroxine as this replaces what your thyroid doesn't make anymore..

Good luck. Hope you.feel.better soon

alfonsina1995 profile image
alfonsina1995

Hello!

I am diagnosed with hypothyroid 2 years ago.

I have been struggling with low energy, oversleeping and still feeling tired, depression and anxiety, racing thoughts, visual side hallcinations, muscle and joint pain during day and night, low blood pressure and heart rate, very cold hands and feet, bouts of insomma, low concentration, anaemia, repeated stomach upsets with diarrhoea, irregular periods extreme sensitivity to light and hair loss amongst others.

My Dr. changed me from levothyroxine to Endonorm and for the first time since I have been hypothyroid I have felt better and my body temperature is now normal! Mine health has really become better!

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