Diagnosed Hypo at 16, been putting on weight since, dieting and exercise not halting the weight gain :(

[Kulukulu]

Hiya, sorry if there have been posts like this before but I'm just so fed up and frustrated.

I was diagnosed with an under active thyroid at 16 (now 24) and have been prescribed Levothyroxine 50mcg ever since. I go to my 6 monthly blood tests and they always conclude to keep me on the same dose. I was slowly putting on weight through the years but since I became 22 the last two years I've put on weight rapidly, 4 stone in 2 years and climbing at about 1lb a week now, sometimes more (4lb last week!)

I thought it might have been the citalopram I was put on at 22 for my anxiety and depression so I've recently taken myself off of those but it's not made a difference. At the start of the rapid weight gain I went to see my GP who told me to continue exercising and cut down to 1700 calories per day which I did for a year.

With that still not working this year in January I dropped down to 1000-1200 calories per day. The exercise I do daily is 30 minutes on the rowing machine and 30 minutes of aerobics/toning. I just cannot understand how I can still be putting on weight each week by following this routine, it defies the logic of everything my GP has told me now that my BMI is 37.9 and still climbing she's told me that a gastric band or bypass is my only option.... I really really don't want to believe that

Any help or advice would be appreciated.

[greygoose]

It does not defy hypo logic. But your doctor obviously knows nothing about that.

Why are you still putting on weight? Probably several reasons, but the two mains ones are :

* you're not eating enough

* you're exercising too much

Doctors know nothing about nutrition, weight-gain, weight-loss, hormones, etc. All they know how to do is certain blood tests - often not the right ones, and even if they do do the right ones they don't know how to interpret the result - and prescribing drugs. They believe the received myth that all weight-gain is down to excess calories and not using them up - in other words : calories in vs calories out. But, it doesn't work like that in reality - especially not when you're hypo.

You need to eat enough to fuel your body. Calories are energy that allow us to do things. Every single thing you do - like digesting and breathing - uses calories. You also need calories to synthesis hormones. And if you don't get enough calories, you don't get enough hormones, simple as that.

You are hypo, which means, grosso modo, that the hormone that runs your body, T3, is too low. That causes a lot of symptoms, including putting on weight. If you don't eat enough calories to synthesis enough T3, you get even more hypo, and put on even more weight. You've proved that to yourself, right?

Exercise also needs calories - and you are using up a lot of calories with the regime that you have - which means even less calories to make hormones. But, on top of that, as well as using up your calories, exercise also uses up your hormones. And you cannot easily replace them because you are hypo. Therefore, you get more hypo and put on even more weight. You've also proved that to yourself, right?

So, what's the answer? Three things:

1) eat more. But good food, plenty of protein and good fats (yes, fats have lots of calories, that's because you need them and you need fat) such as butter, olive oil, animal fat, nuts, avocados, etc. Fresh fruit and veg, some carbs, not too much fibre, and don't skimp on the salt. The things to avoid are all things processed - including processed seed oils, and all forms of unfermented soy - soy flour, soy protein, soy oil, etc.

2) exercise less. Just gentle walking or swimming - or yoga - until you are well again. No rowing machine, no aerobics, no running, etc.

3) optimise your thyroid hormones. You haven't told us how much levo you're taking, nor what your levels are. Do you even know what your levels are? Do you know that you are entitled to a print-out of your results under the Data Protection Act of 1998? Ask for them at the surgery. If they refuse, they're breaking the law. if they ask why, just tell them it's for your personal records. But, in reality, you need to know exactly what was tested, and what the results were. You cannot rely on your doctor to know what she's talking about when it comes to thyroid.

You're right, a by-pass is not the only option - it's barbaric and dangerous, and doesn't always work - especially not if your weight gain has nothing to do with eating! You're just going to starve yourself to death! The other option is correctly treating your hypothyroidism - which your doctor obviously knows nothing about! I bet she hasn't even tested your nutritional levels, has she!

When you are hypo, your stomach acid is usually low, which means that you have difficulty digesting and absorbing nutrients. And, nutritional deficiencies will also block your weight-loss. So, ask your doctor to test :

vit D

vit B12

folate

ferritin

see what she says. If she agrees, don't forget to get a print-out of the results! Post them here - with the ranges - and let's see what's going on. Also post your thyroid results, when you get them, and let's have a look at those.

And cheer up! All is not lost. You're here now, and we will get you well.

[Kulukulu in reply to greygoose]

Thanks for your reply, it definitely confirms my suspicions that my GP doesn't know what she's talking about when it comes to my thyroid! She doesn't listen to me regarding anything really, just puts everything down to my anxiety and depression. I went to her recently with a rash that i got after volunteering at an animal shelter and she said it'll be my anxiety and it'll go away.... 4 months later and I still have it I'm a bit of a pushover and I know that's my fault, if I was more assertive somehow I probably wouldn't be stuck like this!

Ever since I was diagnosed when I was 16 I've been on the exact same dose of Levothyroxine which is 50 microgrammes once daily. They only test me once a year and always say it's the same (more accurately they don't contact me and when I phone the surgery asking if the results were alright I get told "If there was something wrong we would have called you, please don't waste our time in future".)

I've never had a print out of my results, I've never even had them explained to me tbh, just told in the beginning I'm hypo and to take these tablets once a day. And I've certainly never been tested for anything else besides anaemia many years ago. I'm quite scared to ask for a print out of results and request tests but I'll certainly give it a go. I'm only scared because I already know that I'll have to fight to get them

That's really interesting about exercising and eating, it makes sense I guess. I've only been doing what I've been doing because my GP told me to, she even suggested that my current hour of exercise still isn't enough and that I should try to fit some walking in as well!! The time before last that I saw her she told me to try taking XLS Medical or another brand of fat binder..... Even though she knows that I'm only eating around 1200 calories per day and that's mostly carbs like she told me to eat.

Anyway, I think I've felt for a long time that I don't trust my GP or even like her, it's my own fault for not growing a pair and standing up to her. I really appreciate all the info, I will try my best to get through to her, at least I can go armed with proper information now. I won't be able to get an appointment any time soon though as you usually have to wait 6 weeks to see your GP at my surgery (They only let me see my assigned GP, I've asked to see other Drs before and the reception always says that I can only see my assigned GP that is their policy. Even though when I was in therapy an NHS psychotherapist who used to be a nurse told me that that rule is outdated and no longer exists and I should continue to insist on seeing whichever Dr I want to. I did try, the receptionists don't back down though.)

Thank you :3

[greygoose in reply to Kulukulu]

Oh, dear, oh, dear, oh, dear. That is bordering on negligence! You’re right, she really, really does not know anything about thyroid!

Let me tell you how it is supposed to happen :

1)You are diagnosed after getting tested for TSH, FT4 and FT3, plus antibodies – to know if you have autoimmune thyroiditis (Hashi’s) – and put on 50 mcg levo, the usual starter dose.

2)Six weeks later, you get a test and your doctor increases your levo by 25 mcg.

3)Six weeks after that, you get another test, and she increases your levo by another 25 mcg.

4)You continue like that until all your symptoms are gone.

5)If you end up on a highish dose – say 200 mcg – and you still have symptoms, she should check your FT4 and FT3 again to see if you are converting correctly. If you aren’t, then you should have a little T3 added to your T4, and tested again in six week’s time.

Of course, it doesn’t always happen like that because doctors are too ignorant, and the FT3 test is too expensive! But, it’s usually a bit better than what happened to you. Keeping someone on a starter dose for all these years, is negligence!

And, none of this is your fault! So, don't blame yourself. You shouldn’t have to stand up to your GP. She’s been to med school, you haven’t, she should know what she’s doing – and if she thinks she’s out of her depth, she should seek advice from someone who does know.

However, this sort of thing happens time and time again in the thyroid world. Doctors are ignorant but think they know it all, and leave patients suffering.

The receptionist sounds a right dragon! She really needs putting in her place! Wasting their time? What the hell does she think they’re there for!

No, they never offer you a copy of your results. Either they like to keep it secret, or they assume you wouldn’t understand – because, you know, all patients are idiots! Even when they’re other doctors! lol

I’m afraid that lack of assertiveness, lack of self-confidence, lack of self-esteem goes with the disease. Most hypos are that way – even if they were confident and assertive people before they fell ill. I think it’s something to do with the feeling of helplessness we feel in the face of such ignorance on the part of the people we trust to make us well – but who actually keep us sick! Plus low T3, of course! So, that’s the first hurdle we have to over-come – because we’re not going to get better otherwise!

You just march straight in, look the dragon in the eye, imagine she’s sitting there in grubby underwear, and ask politely, but firmly, for your results, please, in a voice that tells her you will bridge no arguments. It is not negotiable, but you’re willing to give them a few days to get their act together. I have found, over my career as a hypo patient, that if you put enough conviction into it, they won’t argue.

Same for your doctor. Ask her for the tests, politely and firmly, and if she kicks up, just tell her that if she doesn’t agree, then you will be forced to get your tests done privately, and if the results prove negligence, you might consider taking things further… Don’t know if you’ll summon up the courage to do that, but it’s something to remember for future, when you’re feeling stronger. They are all terrified of being sued! They don’t want the hassle.

One golden rule of life is : never, ever take dietary advice from your doctor – or any doctor, come to that! They know absolutely nothing about it. Nothing whatsoever. Of course, you couldn’t know that before. We think they know everything – lol – fools that we are! So, only normal you would follow her instructions. But, it’s easy for her to say things like that. She does not have to suffer the consequences of being sick and told to exercise more! If she did, she would soon change her mind!!!

And definitely do not follow her advice and take XLS Medical or anything like that! I cannot believe a doctor would tell you to do such a thing! That muck can have dire consequences. You do not want your fat bound. Your body needs fat, and eating fat does not make you fat. I very much doubt your problem is fat, anyway. It’s water retention.

I don’t blame you for disliking your doctor, she sounds awful! And, it’s good to go well armed. But, do not be surprised if she won’t listen to you. She thinks she knows it all, and you’re just a stupid, lying patient - all patients are stupid and lie! You probably won’t get anywhere with her. But, don’t ask her, tell her. Tell her what you want – and why you want it, if you can. She can only say no. Well, she can shout it, actually. lol But, you don’t care, do you! You will not be intimidated! You know what you want, and you will get it, one way or another. The receptionist might not back down, but neither do you!

Good luck!

[Angel_of_the_North]

Depression and weight gain are both symptoms of under treated hypo thyroid. If you post your actual blood test results here someone may be able to help. If you are low in the active thyroid hormone, T3, which is not the one you are prescribed (thyroxine), exercising will make you worse (and fatter) as it uses up what little T3 you have. Much the same happens if you undereat,as your body goes into starvation mode and slows your metabolism even further. Ideally, you need to get the following tested (the vitamins and minerals because they are involved in converting thyroxine to T3):

TSH

Free T3

Free T4

Ferritin

Folate

B12

D3

Don't expect your GP to have read any studies on nutrition (or even the thyroid) that came out in the last 20 years (or possibly any at all ...)

[Kulukulu in reply to Angel_of_the_North]

Thank you for your reply, I appreciate it :3

I will definitely try to get the right tests done and get a copy of my results to post here, it sounds like something I really need to get done! It's the same with my anxiety and depression actually, she appears to know nothing every problem I have she attributes to it. I've had bad back pain for years and she says that'll be my anxiety. She also thinks curing my anxiety is as easy as going to a social club and interacting with people which she's recommended I do on multiple occasions.

From what you've both said it sounds like my GP has been doing more harm than good For these last couple of years I've been so confused as to why when I was living in Derby at 16 when I was diagnosed, I was able to stay mostly the same weight by just eating whatever and my only exercise was walking the dogs. I couldn't understand based on my GPs advice how come I didn't rocket in weight back then like I do now when I've been trying so hard to follow her advice regarding dieting and exercise!! Now I have some answers at least :3 I definitely need to get on those tests and try to stick up for myself more when she tells me what to do!

Thanks again :3

[Fizz70]

Thank you for posting this - I'm in a very similar position. I eat less than 2000 calories a day, walk at least 8-10 miles a day and also do an additional hour of exercise (dancing or swimming) yet I really struggle to lose any weight.

I'm going to be asking for more tests as a result of this next time I get checked (in 3 months time). It's good to know I'm not alone and I can reassure you that you're not alone either. Take care.

[Kulukulu in reply to Fizz70]

Yeah it's definitely nice to know you're not alone because sometimes it really feels like you are haha. I live with my dad and brother right now and both of them have amazing metabolisms, my dad is super fit and has huge muscles (he trains and works out for it) and my brother eats an entire pack of chocolate digestive biscuits everyday plus his usual meals like hash browns with cheese or kebabs, he does zero exercise and yet he's really thin. Then there's me who has been fat for as long as I can remember

My mum actually has an under active thyroid but went undiagnosed for years, she became very ill, she actually looked like a zombie. She got better when she started taking Levothyroxine, she's overweight too but she isn't really bothered by it. If hers hadn't finally been diagnosed then mine probably wouldn't have been either, as I was showing the same symptoms as my mum (always tired and lacking energy, weight gain etc. for as long as I can remember) and it was only after she was found to be hypo that I was able to say to my Dr, my mum's been diagnosed with an under active thyroid so can you please test me, and sure enough they found I had it too!

[thyr01d]

Hi Kulukulu, from my own experience following Greygoose's advice I am sure she is totally right. First though about accessing your results, you are now entitled to access these online so you can avoid the receptionist. If you request access to making appointments and seeing your test results online you'll be able to just look them up yourself. It's best to put your request to be given online access in writing and the surgery has to give you that access in two weeks, so keep a record of asking. They will require some form of photo ID. I also think you might find you can get yourself appointments sooner doing it this way.

Although like you I started putting on weight at 16 or so and then dieted and exercised just like you. For the last year, after reading posts on here, I have made myself eat whenever I am hungry and I try to eat until satiated.

My weight has stabilised and at a recent endo appointment I was told my weight and BMI were spot on for my height.

I think this also has to do with getting the right vitamins for conversion of T4 to T3, having asked my GP to test ferritin the results showed it to be right at the bottom of the range. Looking back online on my notes I see that it has been this way for at least 15 years. I'm also taking vitamin C, zinc and B12 based on advice from the very helpful people on here.

Something is working for me, so I really hope it will for you to. I'd like to hear from you if it does and wish you the best of luck.

Just realised the other thing I've been doing for a year is seeing an Emotional Therapeutic Counsellor, only very occasionally but that could be significant, it helped me eat instead of being ashamed and starving myself.

[Hidden]

Greygoose is totally correct. When you are hypo your body works different to most peoples in regards to weight loss. Eating less actually makes your body store more as it doesn't have enough t3 to burn the calories. I ballooned in weight, was hardly eating and walking 4-8 miles a day. Piled on loads of weight. It's shocking you are not monitored more or have your results explained to you. It's also shocking your doctor thinks it's fine to keep you undermedicated and then send you for a very dangerous weight loss surgery. It would most likely make you heavier in the long run. Honestly some of these doctors really need to study this area more.