Hypo hippo: The dreaded weight gain: Over the... - Thyroid UK

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Hypo hippo: The dreaded weight gain

linesandlines profile image
46 Replies

Over the years I've had hypo symptoms, I've put on 6 stone :O

Some of it's cake, but I eat less than my kids, and gain weight even on the strictest diet (e.g. Weight watchers, 5:2 and low carb - tried 'em all!) I read in STTM that trying to lose weight when hypo and not properly medicated can do more harm than good, so am trying not to worry to much about what I eat while I get to the right NDT dose. It's hard though. I saw a video of me today at an event last night, and hardly recognised the huge mountain of a woman on the screen as me. :(

2 questions: Those of you who's hypo status is well managed, did you find it easy/easier to lose weight once you found your correct medication dosage?

Is it your experience that STTM is correct about dieting and exercise being harmful whilst trying to sort out your hypo status? The way I look depresses me so much, I'd like to do some additional exercise but not if it'll set my recovery back.

Thanks in advance!

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gabkad profile image
gabkad

Yes, I can lose weight reliably. But okay, here's my today's food intake:

1 cup whole fat milk (160 kcal)

2 duck eggs omelete fried with 2 teaspoons of butter (220 kcal) 1 slice of sourdough rye toast (120 kcal)

2 glasses of Pinot Grigio. (220?)

2 medium small roasted potatoes with a bit of olive oil. (120 kcal for the olive oil and 150 kcal for the potatoes), 2 full cups of wilted arugula and chard (from my garden) with 1 tablespoon of olive oil and garlic. (180 kcal)

That's it. This is probably maximum 1,100 kcal for the day.

And just for that, I'll drink another 4 ounces of Pinot Grigio.

That's the only way it works. I never eat cake, not even on my birthday. That's for sure. 1 slice is over 500 kcal. Goes down like nothing and packs it on like something.

Yesterday's caloric intake was similar.

80 kcal full fat milk with tea (no sugar) for breakfast. Nothing to eat until 6 p.m.

supper was 2 cups of basmati rice with 1/2 cup of green peas and 1 tin (drained) tuna in olive oil. 1 glass of Pinot Grigio.

When I eat like this I lose 1 pound per week. Admittedly, these two days were not a fully 'balanced' diet. But I ate meat and cheese on Tuesday. I don't look at dietary balance on a daily basis. I average things out on a weekly basis. I've been at this since last year and do not feel deprived or hungry. The body got used to not eating for anywhere from 12 to 26 hours at a time. As my above posting indicates, I'm now optimally medicated. And I take some supplements.

It's WAY easier to gain than to lose. I figure my daily isocaloric intake would be 1500 kcal if all I did was lie in bed all day. Then I figure depending on how much activity I do, I burn anywhere from another 200 to 400 kcal per day. If I mostly keep my caloric intake at 1200 kcal per day, then there is gradual weight loss. Since most of the time I eat a large volume of cooked vegetables, the stomach fills up and I'm fine.

This week there was one day, because my kids took me out for my birthday that I ate more than normal. But nowhere near as much as I would have eaten last summer. I eat slowly and somehow the signals get to the brain that 'okay, that's enough'. I never eat standing up or walking around. I do not eat snacks. I always sit down at the table and have 2 meals per day. Very occasionally three. No sugar, no anything sweet, almost no fruit, no fruit juices, no dried fruit, no chocolate, and no nuts. Going hungry won't kill anyone. It's easier to die of thirst. There's that saying that you'll die after 4 minutes of no oxygen, 4 days with no water, and 4 weeks after no food. But there's variations like the rule of 3s. And some people can probably go a lot longer than 4 weeks without food. I probably could seeing as how I've got another minimum 20 pounds left to lose. MINIMUM! Probably 30. Except it's gotta go gradually so I don't end up looking 10 years older than I am. Obviously I wasn't always like this but I've been doing this since probably last year in September. Lost 23 pounds now. I didn't bother to weigh myself or do anything during the summer and I didn't gain or lose so that's good.

Tiggey22 profile image
Tiggey22 in reply to gabkad

Very good post. I am eating way too much :((

It's good that you put exactly what you eat per day, thank you for sharing that

hebden profile image
hebden

Hi Im Nellie the ellie. Not diagnosed by ignorant doctors but struggling with many symptoms and high tsh. I have just been told by gp surgery that I am being sent to slimming world as I really need to get my weight under control. I have done all the diets known to man and they don't work in fact they are the reason I am fat along with untreated thyroid issues. Hugs Joolz.x

Cristalmundo profile image
Cristalmundo in reply to hebden

Totally feel for you as I am the same. I have been to Slimming World (twice) and it is soul destroying to see other people losing steadily each week and my weight stays the same or goes up. Diets do work on normal healthy individuals if they are eating less calories than they use up, but that doesn't apply if you have underactive thyroid. I know lots of people who have lost weight with SW but they are usually healthy and fit people who were eating the wrong things before.

hebden profile image
hebden in reply to Cristalmundo

I totally agree with you Cristalmundo. I was told by the last dietician I was sent to that my metabolism is probably too low to work properly because every time I have dieted 15% of metabolism slows right down and its hard to get that back up. I couldn't get on with slimming world or weight watchers because I hate the group things with diets where I was always made to feel embarrassed. I hated it. I have to show willing to new GP though because they seem to think I want to be this big. No one chooses this.

linesandlines profile image
linesandlines in reply to hebden

So true. They assume you're lying and are worth less help because we can't even be bothered to try. Grrr.

hebden profile image
hebden in reply to linesandlines

Yes if you are not lying you must be depressed. Thats what I get all the time. One Dietician I saw years ago told me to my face I must be lying because I hadn't listed the mars bars I eat on the food diary. I can't eat chocolate and haven't done since I was 12 because of severe migraines. He just didn't believe me. The obesity clinic I was sent to told me I must have missed things off the list of food Id eaten. What would be the point? If they don't know what to tell you they turn it around to be your fault. Grrr and grrr again.

Cristalmundo profile image
Cristalmundo in reply to hebden

I kept a food diary to use as evidence for when they said "you must have cheated" - I produced the evidence and was told that I wasn't losing weight because I wasn't eating enough calories and I should buy a bottle of wine on the way home to top up my calorie intake for the day. I was 11st 10 lbs at the time. The SW group leader was 15 stone so there was a bit of a credibility gap.

Hypogirl74 profile image
Hypogirl74

Hi linesandlines.

I think we're all different and we have to find what works for us. I've tried calorie counting and nothing happens.

I don't follow a diet either I just changed the way I eat-a life change. For me that's no carbs and for it to work I have to stick to it. If I slip I put a couple of pounds on.

I eat a certain way and I know I will always have to. It's been 6 years now and I'm so much happier now. One of symptoms of hypothyroidism is no drive. Don't be yourself up just take things a day at a time.

Not sure abt exercising but would suggest something like Pilates or yoga.

Wish you all the luck in the world 🌎

Fruitandnutcase profile image
Fruitandnutcase in reply to Hypogirl74

I have lost a lot of weight by doing the 8 Week blood sugar diet and giving up grain based carbs and most forms of potatoes.

I did it because a three month course of steroids had made me T2 diabetic so I was also checking my blood sugar before and to hours after everything I ate and getting rid of anything that spiked my blood. So it was goodbye jacket potatoes, bread etc. I get my carbs from carby vegetables.

Look at the DietDoctor.com website, that has a helpful free online video course that you can sign up for, it lets you see what to eat and what to avoid.

I don't think doing loads of strenuous exercise will work, it will just sap your body of energy. I'd do what Hypogirl suggests and go for Pilates (my favourite exercise) or yoga and try to fit in a half hour walk every day.

Silly profile image
Silly in reply to Fruitandnutcase

I have just started the 8 week blood sugar diet on Monday . No weight off yet after 4 days bpbut I'm sticking with it because I feel so much better . Hopefully the weight loss will come . I have not stopped gaining even on Thyroxice so it's my last bope

susieru profile image
susieru

My issue is the complete opposite. I have lost so much weight that I have had to restock my wardrobe. I dropped 3 dress sizes in about 6 months, without trying to or wishing to. Now they want me in hospital for tests......

Silly profile image
Silly in reply to susieru

Isn't it funny if we gain 3 dress sizes in 6 months they don't send us to hospital for test ! They just tell you your depressed , eat less move more

shaws profile image
shawsAdministrator in reply to Silly

This link may be informatve:

web.archive.org/web/2010032...

hebden profile image
hebden in reply to Silly

Its annoying isn't it Silly. They don't do their job by trying to find the cause they just blame you and want you to pop anti depressants (which make me fatter).

tracyd59 profile image
tracyd59 in reply to Silly

Here here Silly!! or Hear Hear!! or however it's spelt.

linesandlines profile image
linesandlines in reply to susieru

Oh dear. Good luck. x

shaws profile image
shawsAdministrator in reply to susieru

I hope everything goes well for you. I wonder if you are hyperthyroid rather than hypo thyroid?

susieru profile image
susieru in reply to shaws

Don't think so. I am very susceptible to cold, and have very low energy. Hypothyroidism was diagnosed about 10 years ago. Before that, GP said I was suffering from depression!

greygoose profile image
greygoose

Yes. And yes. When I got my T3 to the level I needed it, the kilos just dropped off. And, I've seen so many people on here that say they eat 800 calories a day, and exercise every day, and they're putting on more and more weight!

Why? Well, you need calories. Everything you do - even thinking - needs calories. And, if they're in short supply, so things go to the wall - like converting T4 to T3. Low calorie adversely affects conversion, so your T3 level goes down, you get more hypo and put on more weight.

Exercise not only uses up your calories - meaning that there's even less for conversion and you get more hypo, etc. - but it also uses up your T3. And, when you're hypo and just taking levo, you cannot easily replace that T3. The levo has to be converted, and we're not always good converters for various reasons, and if we're not eating enough calories, it's even worse, so our T3 bottoms out, we're more hypo and we put on more weight.

Of course, we're all different, and we have to find what works for us. But, if you've tried every diet under the sun and not lost any weight on them, it's pretty clear that low-calorie isn't going to work for you. And, diets like Slimming World are even dangerous because they're based on low fat. We need fat, it's an essential nutrient. If we don't eat fat, we cannot transport cholesterol round the body - and yes, we need cholesterol, too. No cholesterol means no sex hormones and no vit D and low stomach acid, which means we can't digest our food and absorb the nutrients, and low nutrients affects conversion so be become more hypo and put on more weight, etc. And, also, if your sex hormones are low, all your hormones are thrown off-balance and you become more hypo and... etc.

Fat has the highest number of calories, it's true. So, when people try to lose weight, the first thing to be shown the door is fat - which is one of the reasons we have all these low-fat/no-fat products on the supermarket shelves. So, two mistakes there : low fat and low calorie. So, we become more hypo etc. Eating fat does not make you fat, and cholesterol does not cause heart attacks or strokes!

So, what you've got to do is find out what your FT3 and your nutrient levels are. You're probably going to have to do a private test, but it will be a good investment in your future health. You need to do :

TSH

FT4

FT3

TPOab

TgAB

vit D

vit B12

folate

ferritin

And, with that lot, you'll know much more about your thyroid status, and can correct what's wrong. Post your results on here, and we'll help you.

And, as if all that weren't proof enough that diets aren't going to make you lose weight, the odds are that your hypo weight-gain isn't even fat! We hypos have a lovely stuff under the skin called mucin. Mucin collects and holds water. Water is heavy! But, no diet under the sun is going to make you lose water. So, you're torturing yourself, and making yourself sicker, for something that is never going to work! So, feed your body with good food, because that's what it needs more than anything. Except, perhaps, a little T3...

ElleBee71 profile image
ElleBee71 in reply to greygoose

thank you. great and personal response greygoose! You give me hope!

greygoose profile image
greygoose in reply to ElleBee71

That was the intention. :)

linesandlines profile image
linesandlines in reply to greygoose

yes, fab advice, thanks Greygoose. My results back in April* were as follows:

TSH 5 [0.3-4.7]

FT4 13.23 [12-22]

FT3 4.02 [3.1-6.8]

TPOab 8.8 [<34]

TgAB <10 [<110]

vit D 51 [50-220]

vit B12 304 [250-725]

folate 11 [4.6-18.7]

ferritin 71.2 [20-150]

*results are that old due to waiting for a complete wash out of an appointment with an Endocrinologist. He sent me home with a flea in my ear, which is when I started on NDT.

Supplements:

3000 iU Vitamin D spray

1000 mg Vit B12 sublingual

Vitamin A, Vitamin B complex, Vitamin C, Magnesium,

Raw Adrenal Glandular (just a month long course).

greygoose profile image
greygoose in reply to linesandlines

Well, your TSH is obviously too high, and your Frees too low. And your vits and mins too low, too. Hopefully some of those have risen a bit by now! How much NDT are you taking? I think it might be time to do some more labs, if you can.

Once you're on NDT, the most important number is the FT3. So, if you can't afford everything, perhaps you can just get that done.

linesandlines profile image
linesandlines in reply to greygoose

I've tapered up to 2 grains of NDT, greygoose. Been there for a week now, so was planning on testing in 5 weeks. Luckily the GP has said he wants to do the blood tests, but of course they won't include FT3, so hopefully that is all I need to pay for!

greygoose profile image
greygoose in reply to linesandlines

Well, that sounds good. Except that the TSH and FT4 aren't going to tell your endo anything! Why don't they realise that? lol

in reply to greygoose

Greygoose... you are a hero!! Your knowledge is FANTASTIC! You give me, and im sure soooo many others, hope that we arent overweight as we eat too much and dont move enough.(grrrr!!! Hate people that say/think that😠) we are ill. And thats that! So.. thankyou v much!!! Please keep posting. 😊

greygoose profile image
greygoose in reply to

Thank you. You're welcome. :)

I'm afraid that people have been brainwashed into thinking that the only way to put on weight it to be a lazy, greedy pig. And, the worst of it is, doctors think that, too. It's pure ignorance, because there are so many other things that can make you put on weight. And, unless you eat ginormous amounts of food, it's rarely anything to do with what you eat. I even know people who eat ginormous amount of food and stay slim, but they never get a mention. It's all to do with the culture of patient-blaming that flourishes in the NHS - and in most other health services around the world. Don't really know what we can do about that...

Happyad profile image
Happyad in reply to greygoose

Superb post, I've copied it on my quest for an end, I'm in london so should be easy.

alibob63 profile image
alibob63 in reply to greygoose

Thanks, excellent advice! x

SlowDragon profile image
SlowDragonAdministrator

Get your vitamin levels checked. We need very good levels of vitamins, especially D, B12 & folate.

Gluten and/or low stomach acid can be issues too

Personally I found magnesium, D, B complex & B12 really helped the mucin disperse. Weight not dropped much, but I have lost over 3cm circumference off my arms in just two months & feel so much better too

linesandlines profile image
linesandlines in reply to SlowDragon

Ooh, good tip re taking measurements, thanks SlowDragon.

ElleBee71 profile image
ElleBee71

Gabkad I too am struggling with weight like so many others on here. Eat nothing (1200-1600 calories a day on average, all very healthy well balanced food) and I am gaining weight. All since coming off T3. I am almost back up to my weight pre-dx, which is depressing and I don't recognise the person I see in the mirror. We need help to do this - and not to be told by doctors to eat less, directed to exercise more, or directed to slimming world and the likes.

Good luck with the above! Its a long hard slog, but having done it successfully previously (I used the Dukan diet to shift my bulk originally - its not working now as I am not on T3 currently) I know its possible.

susieru profile image
susieru

I am taking your advice re vitamin B, because I get terrible pins and needles, and my hands go into spasm and my face 'freezes;. It is very scary. I am not able to walk much, and I fall over most days, because (I think) my blood pressure is low. But I don't know any of the terms which are used on here - like TSH and FT something....what do they all mean, please? I have lost a great deal of weight without dieting. I don't have much appetite, and when I am stressed, IBS comes roaring in at me. Nightmare. But I think it is all down to stress, and I don't want to go for tests. I am 73 years old, and just can't face the idea. My husband, to whom I have been married for 52 years, is in hospital at present, and nobody knows what's wrong with him, except that it's neurological and akin to MS. Life is pretty bleak. He has been there since July, and before that we had never been apart for longer than a week or two in all our married life.......

RedApple profile image
RedAppleAdministrator in reply to susieru

susieru, Have you been diagnosed with a thyroid disorder? Are you on any medication at all?

susieru profile image
susieru in reply to RedApple

Yes, I was diagnosed with hypothyroidism, about 10 years ago, and prescribed Levothyroxine, which I take each day. I also have a hiatus hernia and type 2 diabetes. Altogether, I take 7 pills each morning, and 2 at night.

RedApple profile image
RedAppleAdministrator in reply to susieru

What is your levothyroxine dose? Too much thyroid hormone can cause some of the symptoms you've described. Has your doctor done a blood test recently to check your thyroid hormone levels?

linesandlines profile image
linesandlines in reply to susieru

Susieru, I know you don't want to go for tests, but please do talk to your GP and have some blood tests at the least. You have an awful lot on your plate, and feeling so wobbly and awful must just make it harder to deal with. I hope you and your husband are feeling better soon. x

hebden profile image
hebden in reply to susieru

Oh bless you susieru. I hope you husband gets diagnosed and treated and can come home to you soon. Its horrible being apart isn't it. I found vit b12 and magnesium helped with the pins and needles. I take B12 in the morning, D3 and K2 lunchtime and spray magnesium on my painful joints at night. Take care. Hugs Joolz.x

susieru profile image
susieru

Thank you so much for kind wishes. My GP sent a nurse around to take blood two weeks ago. But then, when he came on a follow up visit, he didn't know if the nurse had tested for thyroid! I have absolutely NO faith in the NHS. I know, we speak as we find, but my husband has now been in hospital for 4 months, and they STILL don't know what is wrong with him. Before he collapsed, he had been visiting surgery on almost a daily basis. Every time he went, he saw a different GP, who told him something different and changed his medication. They are HOPELESS. I know, we speak as we find, but I would never willingly visit that place. I have to go, once a year, for retinology eye test, but that's all.

RedApple profile image
RedAppleAdministrator in reply to susieru

susieru,

We hear you and understand :)

You say above that you take 7 pills each morning, and 2 at night. Can you tell us what these pills are i.e. name and dose?

My personal experience has been that sometimes doctors prescribe medicines for several conditions, without taking into account that the medications can interact with each other and cause unexpected side effects. It can sometimes be the case that taking different medications all at the same time, is also causing problems.

hebden profile image
hebden in reply to RedApple

I agree RedApple. doctors don't seem to link things up they just treat symptom by symptom when some symptoms are because of the same condition.

linesandlines profile image
linesandlines

Thanks Roderick. Yes, I did strict low carb and was in ketosis for 2 years. During that time I just about maintained my weight, but certainly didn't lose anything, which was disheartening. I do find a low carb diet makes me feel better more generally than a standard diet. I've yet to find something that works. When I was younger I had no problem losing weight doing low carb or low fat.

Zion2 profile image
Zion2

It's not funny I think it's a disgrace and shame on gps who say 'you must be cheating on what you're eating' or ' I will put you on antidepressants to help you feel better' ! Shame on them for not spending more than ten mins of their precious time on listening to US !!! Shame on every one of them playing god with our lives, telling us that, in my case, levothyroxine will make me feel so much better, giving me more and then telling me I need to take less, then putting it up again. Plus they used to check my bloods every 3 mths, not full test, but now I'm told it's yearly! Plus I have to ask when is it due? Put it this way, when I decided to tell my gp I was coming off levo and going on my own sourced NDT? he then said he'd do a blood test for 'everything'. I've never had that before, but the lab in their wisdom and acting like a law to themselves refused to do all my gp asked for, but I found I had H Pylori and very very low ferritin level! How long I've been so bad I've no idea as I've always felt no energy or willing to do anything and always had to push myself ! I'm sick of gps and the like choosing which patient to help thoroughly and who to fob off with ' you need to diet and exercise' NO you pillock, you need to go study up on thyroid problems and issues, give the right test for us, insist the labs do as they are told, and stop dishing out synthetic thyroid medication to us all when it's proven millions of us are being made ill on it! Why help someone losing weight for no reason and yet basically snigger at us that put on weight and eat less than the person with overactive thyroid !! To have a underactive thyroid causes weight gain no matter if you kill yourself in the gym, diet like there's no tomorrow or even have surgery to help get rid of the fat! If we are not getting the right medication and treatment we will put on weight, it's not our fault, we do not stuff our faces from the time we wake up so stop making us feel guilty for needing to eat something every day that you class as 'fattening'. It's disgusting how it's gone on for so long and is the cause of many a persons depression!

hebden profile image
hebden in reply to Zion2

Well said Zion2. Its not the right word but its "good" to know we are not alone in this. I have been going to weight watchers for 4 weeks because my GP surgery said I had to attend for 12 weeks even though I have told them my extreme weight gain is not food related. I have lost weight at the rate of 1lb a week, but this is not because of weight watchers its because I am starting to get my nutrients optimised and started NDT the week I started weight watchers. I have not followed the diet plan at all so I know this is not responsible for the little bit of weight loss. The first week I took one look at the paperwork and thought this is the same old c**p as I was given 15 years ago. It didn't work then when I followed it religiously so its not going to now. I was also told on my 3rd week that I had to attend the meetings as it is through the NHS and if I didn't go they would report me. This was said without them taking into account the fact I have osteoarthritis and fibromyalgia and couldn't stay because I had a flare and just needed to get back to bed. I didn't go last week (my 4th wk) because I was still feeling rough and in pain. I was made to feel really guilty and then I thought....... "no" Im going to do what I need to do to feel well not what everyone else thinks is best for me because it is policy. They will probably bring up the depression word again but I can assure them I am far from that. I am now 5 weeks into taking Thyroid s and my last blood test showed good results for nutrients and even though TSH was slightly lowered from 6.90 it was still 6.59 so still a way to go but I feel that I am at long last on the right path. The only worry for me is that I won't be able to find a source of thyroid s when my lot runs out as I can't find it on the site I got it from. The Powers that be seem to be trying to stop people treating themselves and getting better. If people are getting well they will have less power won't they.

TupennyRush profile image
TupennyRush

Hi there

I know just how depressing the weight gain can be. I had a doctor tell me that I was causing all my own hypo symptoms through being so fat, fat, fat (it took me 6.5 years to get a diagnosis and I gained around 5 stones)

I lost about 1/2 a stone on levo and a further stone on ndt. Both over a year. I then stalled. The docs put me on Metformin for metabolic syndrome last Feb and that saw off another 1/2 stone. I started the paleo elimination. I nation last Sept and have lost a stone and a half. It's now not a diet but a lifestyle plan, ie I know I'm going to have to eat like this for the rest of my life.

You do 30 days of a very limited diet and then reintroduce foods one at a time. I'm still reintroducing but have pretty much worked out what I can and can't eat. Before the diet I think I was eating around 1700 calories a day (I put on all the weight eating under 1500 which I know sounds a lot but I'm 5 foot 9 and active). I'd estimate that I'm currently eating around 2000 calories a day and losing weight.

It's not how much you eat but what you eat. I stopped doing a food diary after the evil doctor told me it was a tissue of lies as I obviously couldn't be eating what I said I was as I wouldn't be so disgustingly fat if I were. I also had an incredible doctor after that one who 'solved' the mystery as he decided I was an alcoholic (my liver was damaged by the undiagnosed hypo) and as I wasn't recording the couple of bottles of wine I was drinking a night because I was denying my alcoholism this was where the calories were coming from that were making me fat..... Only issue was that I wasn't drinking any alcohol at this stage....

So it's not you, it's their blinkered view of how the metabolism works

Good luck

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