Childhood hypothyroidism : I am now 46 and have... - Thyroid UK

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Childhood hypothyroidism

Jodypody profile image
29 Replies

I am now 46 and have recently, finally got the doctors to agree to put me on thyroxine treatment. I've just read a couple of threads on childhood hypothyroidism and its effects. I am convinced I've had this since very early on. Let me explain. My sister and I are 20 months apart but I am quite a lot smaller than her 3.5inches. We were both gymnasts from around the age of 5. We both trained four times a week doing a straight 8 hours on a Saturday. I was always the chubby one yet we were fed similar diets initially. But my mother found my podgy outline a bit offensive it would seem and kept putting me on diets. A friend remembers one occasion when she came round for dinner I was around 7 and my sister and her were fed egg and chips and I was given a slimming sweet meal replacement called adds (don't laugh). And so it went on in to early teens at one point being made to weigh myself in front of another of my friends to prove how fat I was (I was 9.5 stone and 5ft3) Again she. Would put me on >1000 cal per day diets eating things like steamed rhubarb with sweetener and diet soup and so it went on. Looking back it was pretty harsh especially the taunts about me being fat and disgusting. Never despite my grandma having had hypothyroidism was it a suggestion it was just me being greedy or being accused of secret eating. And so it went on me constantly dieting to stay at a normal weight and later using amphetamines. I have also flirted with bulimia in a particularly stressful time (moving back in with my mum) Anyway I've badgered the doctor for years to test my thyroid having suffered with constipation, unnecessary weight gain and panic attacks. Finally I'm here and after three weeks of levothyroxine my panic and anxiety are subsiding.

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PR4NOW profile image
PR4NOW

Jodypody, glad that you are finally getting some help. You might find this story of UK twins of interest. PR

youtu.be/kIhQUfPhPiY

youtu.be/H27h9bHaT9I

This is a book they co-authored called Hypothyroidism In Childhood and Adulthood

amazon.co.uk/Hypothyroidism...

Coastwalker profile image
Coastwalker in reply to PR4NOW

Hi PR4NOW, thanks for your link, I am searching for a similar story I read in a magazine a few years ago, real life story of twins, a girl and boy who both grew up together, but the boy was tall and thin built and could eat anything, but the poor girl was obese, yet their mother fed them the same. The girl went on to have a band fitted to help her loose weight. Eventually in her late teens the girl was found to have a medical problem. (I think it was thyroid/hormone connected.)

I believe their family went through the mill accused of over feeding her.

Any ideas where I can go to find this PR4NOW ? Long shot I know.

PR4NOW profile image
PR4NOW in reply to Coastwalker

If you remember the name of the magazine that would of course help but if not other than the usual search engines I'm afraid I don't have any useful tips, sorry. PR

Coastwalker profile image
Coastwalker in reply to PR4NOW

No, unfortunately I can't remember the name of the mag, I gave the cut out story to someone and never got it back, it is now needed to prove a point to medics about metabolism, I will keep on searching PR, Thank Q.

CW.

greygoose profile image
greygoose in reply to Coastwalker

Lord, that sounds so familiar!!! I was short and fat - never grew after the age of 12 (although I was tall for a 12 year old) - and my brother was tall and thin. And not only were we given the same food, but I didn't even eat half of mine, whereas my brother was always cadging off other peoples plates. He was totally obsessed with food and I didn't like it much.

Yeah, my mum went on about me being fat, and discussed corsets with the mother of a friend who was also fat. So humiliating! And I was called greedy, although I really don't see how I could have been! I used to try and get out of eating, rather than running after food! But, at least my mother never put me on a diet. Once I hit my teens, peer-pressure made me try dieting myself, but it didn't do much good. I think it just made my nutrition unbalanced, because I had no idea what I was doing.

However, I would think that if you didn't have thyroid problems to begin with, the diets and stress would more than likely have made you have them. Diets are bad for everyone, but especially so for kids.

I didn't get diagnosed until I was 55. I often Wonder what my life would have been like if I'd got treatment as a child. I think I had adrenal problems, as well as thyroid. I could have done better at school, gone to university, got a top job. Been gorgeous and shapely... But I probably wouldn't have. Looking at the gorgeous and shapely ones amongst my school friends, they were the ones that got married early and had kids before they were twenty and never had anything in the way of careers! So, I forgive all those stupid doctors that told me I was greedy, lazy and stupid. No I don't!

I'm sorry I can't help you find your article. But I don't think it's an unusual story. Hope things get better for you and you have a good life now that you're getting treatment.

Hugs, Grey

Coastwalker profile image
Coastwalker in reply to greygoose

Not for myself, grey goose, I'm quite the opposite, but for a tall, lovable, cheeky child who has just turned 8yrs old and is now 9 stone, a man mountain all over, who won't fit into the little tick boxes of the school nurse's weight chart, right from when he was a baby.

He has to embarrassingly be dragged out of lessons in front of his school mates to be weighed and many visits to the Pediatrician, (not forgetting an endocrine,) who both have never checked his bloods to see if he has a thyroid problem or a gut issue, despite us asking if it was all connected. It far easier for them to blame the parents for over feeding this child, put the child on a stupid amount of hardly any calories and get the SS involved.

Child is always on the go, always hot and over sweaty, never stops, needs hardly any sleep, which does not match with someone being over weight. We need his adrenals checked and have written proof he has a very low FT4 which sits in the bottom quarter, whereas most people feel better when their FT4 is towards the top third or quarter.

Sounds like you went through the mill too greygoose, terrible for you, don't think I would forgive them either.

I think anyone nowadays having problems with weight they cannot loose no mater what they try, should have their bloods checked before their doctors send them onto exercise classes or gyms. :)

greygoose profile image
greygoose in reply to Coastwalker

I do so agree with you, coastwalker. Poor child. Thyroid ought to be the first thing they check, not the last!

I'm very afraid that my eldest granddaughter is headed that way, too. She is 11 now and has put on a lot of weight. I look at her neck and I'm sure I see the shadow of a lump. And her beautiful hair has become dull, with lots of broken hairs sticking out. The poor child accepts that she's fat - fatter than her class mates, but just shrugs it off. She has often seen the pediatrician for frequent stomach problems, but he just says to eat more vegetables! Don't think she's ever had a blood test.

But her mother won't hear a word about thyroid - she's sick of me going on about it, to tell the truth. I'm working on her, slowly but surely, and I think I'm beginning to get somewhere. Sometimes she says something out of the blue which proves she did listen to me, after all. But where her daughter is concerned, it's a different matter. She won't admit there's anything wrong.

And perhaps there isn't! Maybe I just see thyroid everywhere because I'm obsessed with it. I don't know.

I do hope you manage to get help for this boy. He must be going through hell. When will things ever change?!?!

Hugs, Grey

Coastwalker profile image
Coastwalker in reply to greygoose

Yes I too feel almost 'obsessed' by Thyroids, (you are not on your own Greygoose, ;) )

I feel this thyroid obsessity is all around, it's even jumping out of the wood works at me. :O

Think your Daughter will eventually work it our about your poor Grandaughter, keep hinting, best to get it checked out if you can, though persuading a Doctor might be more difficult.

Does your GD get weighed at school too. ? This Lad not only had his lunch box checked, but food items were written down daily too, how discriminating is that ? Luckily noted that less was in his lunch box than other kids, will add that Mc. Donald's is a swear word in their household and most days Mum cooks from fresh.

greygoose profile image
greygoose in reply to Coastwalker

No, she doesn't get weighed. There's no such thing as a school nurse, here. Well, not in most schools. And she has school lunches, which are marvellous in France. Well balanced and well prepared. So no problem there.

We are very anti-Mc Donald's, too. Well, since we found out what's in it! And before that, it was too expensive to have very often.

The thing that gets me is the number of goitres around and nobody thinks anything of it! I sat playing bingo one night (not something I often do! lol) and inbetween cards I looked around me at all the over-weight women surrounding me. And what did I see? Goitre, goitre, goitre, missing eyebrows, goitre, goitre, goitre... And their doctors just think they have fat necks because the rest of them is fat! How ignorant! Makes me cross.

I feel so sorry for your poor boy. I hope he's not traumatised for life. But it's the sort of thing you don't forget. Is it not possible to get his tests done privately? Or would that bring the Social Services down on your heads, too. It's a terrible situation, and I do hope something good happens soon.

Hugs, Grey

Coastwalker profile image
Coastwalker in reply to greygoose

I too will now try to take more notice of people around me and see if I can spot some thyroidies.

I had a prominent lump come up on my neck the other day, then it went down again, I later wondered if I had been seeing things, but I remember being concerned at the time , now I am paranoid and keep looking at my neck. :)

I think you are right, social are waiting in the wings, but we had thought of private tests, poor mother can't wait till her boy turns 18 to shake SS off completely. These brilliant parents have done nothing wrong. (Luckily at another hospital we did manage to get boy's bloods done, but only after a sit down protest.)

Big day tomorrow, I have a few thyroid/adrenal questions prepared for this boy's Pediatrician and some evidence which will hopefully take the blame off the parents for over feeding, if these questions are not listened to or ignored it will confirm that this pediatrician has no idea on the subjects.

XX

greygoose profile image
greygoose in reply to Coastwalker

You know what, I doubt it SS make as much of a fuss about people that are underfeeding their kids!!!

My kids ate like horses, but they were so thin!!! I heard rumours amongst the neighbours that I was starving them. One woman shouted at me that I should give my kids orange juice!!! I had to laugh because it was just such a stupid thing to say. As if a glass of orange juice was going to make any difference to anything! But nothing was ever said by doctors or hospitals.

The two boys are still thin, but quite muscular because of their jobs, but far from healthy. My daughter struggles with her weight. I actually think all three of them have thyroid problems in their different ways, but none of them will get tested.

I have never had any form of goitre, always a rather lovely swan neck - even if I do say it meself as shouldn't! lol It's shrunk now as I've lost over an inch in height. But it just goes to show how everyone is different and you cannot prove a negative. Even though, when I had a scan, it was the technician's opinion that my thyroid was too small to be causing problems. (What???)

I shall keep my fingers crossed for you tomorrow. I do hope something good comes out of it. xxx

Coastwalker profile image
Coastwalker in reply to greygoose

Meeting not not positive, more dieting for child, no treats what so ever, though they did take photo copies of my T4 low = weight gain/unable to loose weight and Adrenal issues write ups which they will either use wisely to find out more about thyroid issues, put it aside/file it or ditch it, or worse knowing the tricks SS and medics have done so far they will turn it around and say we are all crazy and need mental tests. So we have a one in three chance they will wake up and see the light, but I doubt it.

Are technicians Doctors now ?

I am seeing more and more being written on the web about Thyroid connecting with obesity now, think the penny has dropped. :)

XX

greygoose profile image
greygoose in reply to Coastwalker

I'm so sorry to hear that. It must be so frustrating for you, you must feel like banging your head on a wall! Or punching someone on the nose!!!

Seems to me, most 'professionals' think they're doctors these days - even Social Workers, apparently!

Have a look at this - not saying that your child has put on weight because he eats too much sugar, but there are some interesting bits about how people don't understand about weight gain and lose, and how counting calories is a bad idea - which, I presume, they are doing with your poor lad :

articles.mercola.com/sites/...

Of course, sugar isn't the only bad guy. There are also endocrine disrupters in our foods - and if you have a weak endocrine system to begin with, you're even more in danger (tell me to shut up if I'm going down the wrong track! But I thought it might add some more helpful facts to your arsenal).

If I come across anything else I think might be helpful, I'll post it for you.

Hugs, Grey

Coastwalker profile image
Coastwalker in reply to greygoose

Food for thought greygoose, any advice is worth looking at, I do enjoy reading Dr Mercola's posts as they are very informative.

Luckily Boy's Mum is already into cooking in coconut oil and gets their milk and butter from a local dairy with their own herd of grass fed cows, keeps off of aspartame and similars, uses stevia as a sweetener and cooks from fresh many times a week.

Also Boy unusually prefers water, likes fruit, is not into sweets, but prefers savory foods, now this could have a thyroid connection as I use to crave salty foods before I was optimally medicated for my thyroid, I found out that craving salty foods connects to problems with your adrenal glands.

Boy is now saying he does not want his breakfasts as he is scared of putting on more weight, I am so angry with these medics as they are messing around with this Boy's head and life. This would never have happened a few years ago. A square peg does not fit in a round hole.

XX

greygoose profile image
greygoose in reply to Coastwalker

Good for Boy's Mum!!!

However.... I do have réservations about stevia. I know that the plant itself is ok, but it's the manufacturing process it goes through to get onto the supermarket shelves that is a bit iffy.

Myself, I use organic coconut flower sugar, which has a very low glycemic index, and a lovely caramelly flavour. You can use it in drinks and cakes just as you would ordinary sugar. Only drawback is that it's a bit more expensive than other sweetners/sugar ('cause let's face is, granulated sugar is just dirt cheap so obviously everyone's first choice! Who can blame them.). You can buy organic cocnut flower sugar on Amazon - which will no doubt please the admins! lol

As for breakfast, opinions differ. Dr Mercola himself believes that it's good to miss breakfast because it counts as periodic fasting. Which, it would seem, is good for your health. However, Dr Mercola knows nothing about hormones! What hypos need is a good shot of protein in the morning to support and nourish the adrenals. Something like a couple of boiled eggs would be perfect! Just tell him that eggs do not make you put on weight, they are full of good things and very nourishing - which is what he needs!

I don't know how much he knows about nutrition, but if he's worried about the cholesterol/fat content of eggs, just tell him that eating fat does not make you fat, quite the contrary!

Here's another useful article I found today :

hypothyroidmom.com/the-thyr...

Hugs, Grey

Coastwalker profile image
Coastwalker in reply to greygoose

I will put that to Boy's Mum about stevia and organic coconut flower sugar, never heard of that one gg, learn something new everyday. :)

I never use to eat breakfast and funny enough had loads of energy back then.

Yes boy does like eggs, often has omelette for dinner.

Will check out your link gg, many thanks.

XX

greygoose profile image
greygoose in reply to Coastwalker

Another thought just came to mind: has anyone tried the pinch test on him to prove that it's not fat that has made him put on weight? If it's not fat, then they cannot claim that it's due to his diet.

greygoose profile image
greygoose in reply to greygoose

Hi Coasty, have you read this?

stopthethyroidmadness.com/s...

Coastwalker profile image
Coastwalker in reply to greygoose

Looked at your link GG, thanks many different stories.

Coastwalker profile image
Coastwalker in reply to greygoose

What's the pinch test gg ?

greygoose profile image
greygoose in reply to Coastwalker

The pinch test will tell you if the weight gain is fat or what we hypos usually get - mucin!

Mucin is a sticky substance that clings Under the skin and holds water. I'm pretty sure that only hypos get it.

Fat is not attached to the skin, so you can pinch up bits of it. If it's mucin, you can't.

youtube.com/watch?v=oI9yurd...

Sorry, I can't get the link to work - dunno why. So just copy and paste it into your browser and you'll get the video Hypothyroidism Type 2 : Myxedema symptom.

Coastwalker profile image
Coastwalker in reply to greygoose

Thank you GG I will write it down, check it out and pass it on.

Jodypody profile image
Jodypody in reply to Coastwalker

Grey goose is on the money with the protein theory. Our diet is way too high in simple carbohydrates and a look in supermarket special offers gives us one reason why. A packet of biscuits cheaper than an apple? I was of the opinion that the thyroid was only responsible for about a 10lb weight gain or am I wrong? I don't know being a newbie. The other issue I have is the lack of exercise kids get especially at primary school age. Now only 1 hour a week! A lot of kids are driven to school so no exercise there either. So hardly any exercise and a high carb diet, that'll do it. Why can't the government see these issues?

greygoose profile image
greygoose in reply to Jodypody

Where did you get that idea, Jodypody? Did an endo tell you that?

One endo I saw told me that one should only put on 4 kilos (about the same) no more and no less! Then gave me a lecture about x number of scopes of ice cream multiplied by x number of birthdays multiplied by x number of years... (What the heck???)

Well, he was wrong. There is no limit to how much you can put on. Why would there be? Doesn't make sense. He obviously lacked basic thyroid knowledge.

I shall never forget sitting in his waiting room the first time and looking at all his patients and thinking what a sick bunch they were. Oh, dear, I thought, this bodes ill! They can't all have been there for their first appointment! Anyway, I asked him for T3 and he said, alright, if you insist, but it won't do you any good!!! So there you go, that says it all!

Hugs, Grey

Jodypody profile image
Jodypody in reply to greygoose

When you look at common symptoms it says, moderate weight gain, usually around 10lbs which is mostly water. But as you say everyone is different. It is interesting however to calculate your basic bmr rate and realise that the GDA of 2000 calories for women and 2500 for men is way too generalised. Just another one to pop out there......

greygoose profile image
greygoose in reply to Jodypody

Those who say 'moderate weight gain' have never been hypo!

Jodypody profile image
Jodypody

Hi yes it's comforting to know that there always was a reason not me being a "disgusting fat pig". I should have an eating disorder but actually I don't. I've had go manage my condition by almost overtraining and following a fairly rigid regime. Not easy but I wasn't going to give up and let this beat me. Food is only fuel after all.

Coastwalker profile image
Coastwalker in reply to Jodypody

Sorry for late reply JP, boy is over energetic all day, not into sweets, loves fruit and Mum keeps him on healthy foods, now leaving out bread and wheat's, I am amazed he does not burn all the calories off. Though when both his Dad and he were ill for two weeks with flu, Dad lost half a stone, boy lost no weight. I know myself how easy it is to put on weight with Thyroid problems and how once medicated I suddenly lost the weight, yet my eating patterns never changed, I am not a big eater and only little in build, so a stone heavier suddenly was quite odd, Also I had the exercise resistance thing where my body could not do too much exercise, yet once medicated within a day I could run and dance around once more, it was the most oddest thing. I now know that all people who have weight problems and cannot loose weight through exercise or diet should have their thyroids checked and not always be blamed for over eating.

asmile4u profile image
asmile4u

Oh my jodypody, you could be telling my exact story. I was always active; football, dance, bike riding, etc. and I would seem to look at food and put on pounds while my siblings stayed slim. My mom put me on my first "diet" when I was 5. She said it was all the meat and potatoes my grandmother was feeding me. I also had family members who were hypo and I think my mom is as well, but she refuses to get properly diagnosed. Unfortunately, I was not diagnosed until I was 43. Now I have passed the same thing onto my 19-year-old daughter (bugging her about her weight) and we just found out that she is hypo too. Sigh!

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