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Looking for guidance and advice re: Pre Diabetes with Hypothyroidism, for my 13 year old daughter

Discussion in 'Ask A Question' started by Purple-bobble, Oct 19, 2016.

  1. Purple-bobble

    Purple-bobble · Newbie

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    Hi All,

    I am new to this forum. The reason I have joined is the need to speak to people that may have gone through the same as or similar to my current situation. There is so much information on the net, I am driving myself round the twist. Maybe someone here can shine some new light.... This is a bit of an essay

    My Daughter was diagnosed with Hypothyroidisim at the age of 10 (she is now nearly 13 (in December)
    Originally we went to the doctors when she starting gaining weight constantly as well as having constipation and Diarrhoea and a few other issues.
    We lead a very healthy lifestyle, my husband and I are both in the Health and fitness industry and like to think we are well educated about food etc. knowing how we ate/cooked and the foods that we keep in the cupboards, we knew there had to be something wrong. My daughter was deeply unhappy with how she looked ( no matter how much reassurance we gave).
    and it didn't help that she was told by doctors that she was classified Obese and must exercise more and eat better to at least maintain her weight to hopefully 'grow into it'
    After a fuss and explaining that she does exercise (half hour walk to school, and 4 sports sessions a week) and showing a food diary. she was tested positive for Hypothyroidism and she has been taking Thyroxine ever since. The only time she has managed to lose half a stone in weight was a few months after taking the Thyroxine as well as her other symptoms clearing up, she had new found energy and motivation. she/we thought she was on her way to becoming a healthy weight.
    To cut a longer story a little shorter, she has kept gaining weight slowly, Ive been back for regular check ups and a few times her dose has been increased as her bloods have come back outside of normal ranges again.
    Still with her weight not budging (again with healthy eating and exercise) I insisted there must be something else we could look at. They tested her for PCOS, It came back negative and they sent her on her way, signing her off for another year before they would take bloods again for Thyroid check.
    We have tried strict Gluten, barley, wheat, rye,dairy free, soy free eating and it made absolutely no difference after 6 months, so have no re introduced them.
    We have a My Fitness pal account and have done for a long while now and even tried weight watchers ( so we count points other than calories) we occasionally have the odd w/w meal when we are in a hurry but otherwise we cook. I am very aware of hidden sugars that can be found in all these processed meals. she eats low carb (wholegrains) and we have always kept simple carbs to an absolute minimum.

    She is now on 1200 calories a day and has been for the past 5 months and exercises as mentioned, she fluctuates between 11st 11 and 11st 8lb, she is 5ft 3 and has a waist size of 38.
    Yes she is going through puberty but this is more than puppy fat.

    I asked for a second opinion and changed hospitals as well as her peadiatric endocrinologist who tested her leptin (56.3ng/ml)
    Her fasting insulin (oral glucose test) is 17? what ever that means? and her HBA1C was 5.6%
    she had a liver ultrasound that came back showing she has a degree of Fatty liver. which they say is due to being obese.

    I know she is more at risk of fatty liver due to her size. I am so worried that she will just continue to put weight on, she's so unhappy as we have been battling this for years with the assurance that things will get better. she eats healthier than most adults and never complains.
    It is not a matter of how she looks and I am not a parent that wants a skinny child. I am a parent who wants a happy child who is a healthy weight and is not at risk of developing pre diabetes or any other weight related medical conditions. Being told by her Endo that she needs to lose 7-8kg at least, just doesn't help us! she can't seem to lose anything!!

    I am reading on various websites different things regarding HBA1C results. some saying a 13yr olds HBA1C is ok under 7.5% and others saying anything over 5.7% is pre diabetic as she is 5.6% does that means she must be borderline if thats correct?

    I feel I have done absolutely everything and exhausted all avenues. Even the NHS dietitian we were referred to at my insistence (to prove a point) said she actually couldn't suggest any more after looking at her food diary etc.

    I understand there is a link with Hypothyroidism and pre diabetes/diabetes and I wonder if anyone here has any advice or suggestions at all. If anyone is suffering with the 2 together and what your experience have been?

    Phew...thats it!!

    I thank you in advance :)
    • Hug Hug x 3
  2. tigerlily72

    tigerlily72 Type 2 · Well-Known Member

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    Hi. The good news is that your daughter doesn't have diabetes or pre-Diabetes and she has parents who are educated when it comes to diet, exercise etc. I'm not sure what advice I can give but I'm replying as my husband (who's in his early 50's) was diagnosed at the same time with hypothyroidism, type 2 diabetes and hypertension.

    He'd been feeling unwell for months but our previous GP was dismissive and often attributed some of his complaints to his age! :mad: Both of us.have a parent with Type 2 and we were leading unhealthy lifestyles. It did take the best part of 9 months to get my hubby's levothyroxine dose correct. He did manage to lose some weight but this was with strict carb control - virtually cutting out bread, especially white bread, cutting out rice and other carb laden foods.

    Your daughter is young and still growing so hopefully she'll start to lose a bit of weight soon. It's not easy. I'm assuming she's eating the "good" slow release carbs? In my opinion, and it is only my opinion, Weightwatchers and Slimming World diets aren't always the best or advisable options for anyone with diabetes or Pre-Diabetes. I find that foods that are "low fat" are often full of other things we need to reduce i.e. sugar, salt and carbs.

    Is your daughter feeling full / satisfied after meals? This may seem a daft question but could be relevant. You do also need fat in the diet, the good fats of course.

    It really does sound like you've done all you can for your daughte. I'm hoping you'll get more replies from others that can give you more advice or who have a child with similar symptoms.

    All the best of luck to you and your daughter.
    • Friendly Friendly x 1
  3. himtoo

    himtoo Type 1 · Well-Known Member
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    Hi There @Purple-bobble
    I read your topic with great interest and a huge amount of sympathy and empathy for your daughter.
    Bless her -- just in the time when she is really noticing the world around her she has to be faced with all the added pressure of thinking of herself and not being happy :(

    here is a link to glucose tolerance testing https://diabetes.co.uk/oral-glucose-tolerance-test.html
    if the result you typed in your thread is correct ( 17 ) that does sound like a strong indicator that needs further investigation.

    as an interim measure it would be worth ( in my opinion ) getting a blood testing kit ( at Boots or local pharmacy )
    this would allow you to test your daughters fasting BG level in the morning and you could do some other pre - meal tests -- and 90 minute post meal tests -- to see how she is doing regarding Blood Glucose levels

    here is a link to blood sugar levels that should be seen http://www.diabetes.co.uk/diabetes_care/blood-sugar-level-ranges.html

    do let us know how things progress

    thinking of you both

    ps -- I am type 1 for 44 years and recently diagnosed hypothyroid
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  4. azure

    azure Type 1 · Expert

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    Hi @Purple-bobble

    I second the suggestion to get a blood glucose meter and do some testing at home. It'll cost you money, but hopefully it will give you a better picture as to what's happening. You could test first thing when you daughter wakes up, then two hours after breakfast, then befire lunch and again two hours after, etc. This would hopefully show whether she had a problem with her blood sugar control. If she doesn't, then at least you'd get some reassurance, and if she does then you have information to pass on to the doctor.

    You've said her fasting blood sugar was 17 but you put a question mark after that - are you unsure if that was the right number, or were you just asking about that result? 17 is high for a fasting blood sugar. Was any comment made about that?

    As for the hypothyroidism, I don't know a lot about that so I can only tell you my own experience: my daughter was on meds for an unrelated condition, and put on a fair amount of weight, especially around her waist. I watched her food for months and she wasn't over-eating, but the weight didn't shift. Eventually I managed to get her thyroid checked, and was told all was ok, but I then saw her consultant who pushed for further thyroid tests, which showed an issue. She was never put on thyroid meds as the problem was assumed to be due to her other medication. During that time, I reduced the amount of carbs she ate a lot for a period of a few weeks to try to get the weight to move. She did indeed lose weight and it was like her body had been kickstarted again. I stress this is just my experience and you should akways check before putting your daughter on any kind of diet. I just thought that that might be something to consider - the total amount of carbs per day.

    I really feel for your daughter. It must be upsetting and frustrating for her to be trying so hard and eating sensibly, but not be losing the weight.

    It sounds like you're doing everything you can to help her. My only other advice is to keep pushing if you don't feel you're getting the help you need.
  5. Jamrox

    Jamrox Type 2 · Well-Known Member

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    @Purple-bobble oh the joys of having a daughter with hypothyroidism! My daughter was born with it , she's 22 now and it's still a struggle. She also developed ulcerative colitis and has had surgery etc .
    Anyway you might not like what I have to say but .... are you sure that she isn't rebelling and snacking when you don't know , a sign of stress ? My daughter went through a phase where she hid her tablets , at that time there were a lot of tablets because she was on a lot of tablets for her colitis . She hid them all over the place and I found them by accident, wake up call. Your daughter is taking hers if her levels are ok but she may be eating . Forgive me if I'm wrong .
  6. amy80

    amy80 · Newbie

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    Did her thyroid levels come back in normal range? As long as they are out of range for hypothyroidism she will not lose weight. I would take her back again ASAP. Push to have her Free T4 and Free T3 labs drawn too.

    There is another medication that is T3 not T4 called Cytomel.
    T4/Thyroxine peaks around six weeks. Cytomel/T3 works much faster. I've read online it works within a day but for me it seems to be about 2 1/2 - 3 days I feel a dramatic increase in energy. You could ask for a small dose 5 mcg. Many doctors are reluctant to give it. There is also natural and combined versions of T4/T3 but I'm not familiar with those. I would not have her taking a higher dose than 5 mcg at first as it's very potent.

    Make sure she is compliant taking her medication a couple of hours apart from food. I find it hard to do even at 40.

    It's extremely frustrating to be follow a diet and not lose weight. I used to joke I was the only fat person in the health food store. Or to be at the weight loss group and be asked What did you eat? after gaining. :( I started drink Coke again (due to nausea) but for years I had cut out all white flour and white or refined sugar. I only eat whole grain bread occasionally and no junk food. I lost my taste for sweet things. Still my weight ballooned without regular medical care and I have a lot more problems now.

    Keep pushing her thyroid checks and medication adjustment until she is energetic again.
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    #6 amy80, Jan 23, 2017 at 1:47 PM
    Last edited: Jan 23, 2017
  7. Resurgam

    Resurgam Type 2 (in remission!) · Expert

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    I was diagnosed with low thyroid function, after years of suspecting something was wrong, but I was eating low carb as per Atkins and apparently that confused things.
    I have just been to a diabetes education session where beans and wholegrains were pushed as the things to eat to avoid death - if I ate them I would be unable to lose weight.
    I was never able to lose weight on any diet other than Atkins - and when I did eat low carb I found I lost weight easily, so it might be that your daughter is the same. It could be that her metabolism is like mine, carbs just get converted straight to fat and they are almost impossible to shift.
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  8. fionaclare

    fionaclare Type 1 · Well-Known Member

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    Reading your post, there are a couple of things I would want to be followed up if this was my daughter (and knowing what I know now 7 months after being diagnosed with T1 diabetes & hypothyroidism):

    - my T3 and T4 has always been measured, my endo saying that he thought it was pointless if they weren't. I would push for these:
    - my thyroxine has be titrated upwards 2 times now even though my function has improved. We are aiming for normal, not just improving. Why does your doctor not consider this?
    - also would the hormonal changes that come with puberty be causing havoc? It could be that when your daughter passed this stage it will settle down.
    - has anyone considered iodine deficiency?

    There are also some really good blogs where people have improved their health through diet changes. Google "Against All Grain" and "Auto-immune protocol" for starters.

    Your daughter has a very loving Mum and that is one of the most important things to help her regain her health I think.
    • Agree Agree x 1
  9. Daphne917

    Daphne917 Type 2 (in remission!) · Well-Known Member

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    @Purple-bobble welcome to the forum. I was seen at the age of 17 by an endo because, despite eating healthily and exercising regularly, I have always been overweight and, in desparation, I went on a very low calorie diet and lost the grand total of 7 lbs in 8 weeks but it also made me very ill because my metabolism was so efficient that my body was, quite literally, shutting down. He told me that part of my problem was that my Thyroid couldn't make up its' mind as to whether it was over or under-active and that I was one of his few patients that could honestly blame their metabolism for being overweight and the only thing I could do was to eat healthily and exercise and have regular tests until it decided what it wanted to do. This went on for 37 years but 3 years ago I was finally diagnosed with on underactive thyroid and a combination of Low carb full fat eating and thyroid meds has meant that I have finally managed to lose weight safely - about 21/2 stone so far. It hasn't come off as quickly as for other members here and I still have more to lose but it is a start!
    • Informative Informative x 1
  10. ickihun

    ickihun Type 2 · Master

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    I experience both and had diabetic symptoms at 6yr old. was only tested for hypothyroidism at 22yrs old due to moving from the north-east. Only allowed a post christmas hba1c test when i was 32yrs old where diagnosed type 2. I knew too much sugar would flag something up at a blood test. I was craving carbs. Constantly.
    The good news is ive fought off infertility, never went over 20st til immobility now and i'm still alive enjoying my 2 children..
    Keeping extremely active and low carbing will keep her healthy. Not an exercise fanatic nor extreme eater but warching her carbs and keeping energised to be able to walk miles will give her longevity.
    • Like Like x 1
  11. Soplewis12

    Soplewis12 Type 1 · Well-Known Member

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    Hi Himtoo - I am type 1 for 26 years and just got diagnosed last week with hypothyroid, I was undiagnosed hyperthyroid for at least 4 months before it altered to hypothyroid. (Abnormal thyroid levels picked up on at Annual Diabetic Review). I was hoping you could tell me if you felt a change in your BG levels when diagnosed with hypothyroid? My levels are not erratic but I seem to be having more low levels than normal, lunch and tea time. Prior to the hypothyroid I took 10 units basal, I have adjusted my basal down by 1 unit and it improved my BG for 2 days but now the last 2 days my BG has reduced again. I think I may reduce basal down again by a further unit tomorrow morning to give it a try.
    I was wondering if you experienced any change?
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  12. Freema

    Freema Type 2 · Expert

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    I Wonder why she is not given levothyroxine to normalise her metabolism ..?

    I myself am totally dependant on levothyroxine as my gland has been killed by radioactive iodine, so now I know I need to have my level in the high area of normal level... and doctors do know that being too low also gives a greater risk of develloping diabetes and so does the weight gain from being too low...

    why doesn´t she get some adding levothyroxine to help her metabolism and also help her not to gain weight too... it is not healthy at ll to be too low..?
    is there any Scientific reason not to help her get a normal level of metabolic hormons... do they think she will later normalize by herself or why ?
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