HI All. Im new here and this a bit of an essay to bombard you with as I vent a little! My 13 year old daughter has been on levothyroxine since being diagnosed with hashimotos and hypothyroidism at aged 11. I always get a print of her tests and use these to monitor any changes such as emotional/weight etc. Intially we approached the dr as I knew something was wrong when she just kept gainIn g weight and having constant toilet troubles despite a very healthy lifestyle (both her dad and I are in the health and fitness industry) she has always eaten well and been active so we knew it just wasn't right. Turns out it wasn't and I'm thankful that I had a good gp that bothered to test her!. Despite her thyroxine dose of 100mcg her weight keeps increasing and she is now 3 stone over weight. she has tried everything gluten free. Dairy free. Low carb. High protein and we are now looking in to paleo. She is on a 1300 cal food intake a day and under a dietitian that i insisted upon so they could look at my months of food diaries I'd been keeping . She said she couldn't suggest anything else!. My daughter walks an hour 5 days a week and does sports 4 times a week. She has trouble sleeping at night and no energy in the morings at all, she has a blocked nose most of the tme and bad skin (although that could be her age) she has a degree of fatty liver caused by her weight and a degree of insulin resistance. She needs to lose weight as they keep saying. I'm looking in to asking her endo about possibly adding t3 to her levo as ive read a lot on this combo making people feel so much better, but I just know I will hit a brickwall (from reading others battles with the NHS). Also slightly worried that she may experience side effects that she may not understand like a racing heart, possible anxiety etc.
I've been fighting with them now for over a year as I noted when her tsh level was 0.49 she began losing weight had great energy and was so happy...Very slowly this changed again excessive Weight gain and her TSH was up to 3.0 but to the endos it was within range so she was fine. Last check was 1.71 and they sent me away. The top tsh range at my hospital is 5.0. Her tsh jumps around alot to the top end. She's never been back to that happy place of 0.49.
Researching on the net alot of people seem to have switched to taking their levothyroxine at night. I've started doing this this week. She eats by 6.30pm and takes meds at 10.30. Maybe that will help with energy levels as it has for others.
Has anyone else here made the switch?
Also she used to take her thyroxine at 8am and would have bloods at 9am we were told it made no difference if she took it or not so we just kept to her routine.
Any advice on this also...does it make a difference?
Due to see gp to check her vit d b12 full iron and thyroid levels again next week as it's been 6 months since last routine check. All these were normal ranges 6 months ago. But it worries me as she has gone from mid tsh range to way out the bracket within 3 months before. I only knew because id done private tests imbetween drs visits as id noted another change in her weight and wellbeing. The tsh results came back high so I yet again went back to the GP for them to retest and confirm they needed to increase dose again.
Something is definitely still wrong and I won't stop till I get her to full health.
Thank you so much for reading
Any advice or recommendations very welcome.
A dseperate and frustrated mum! X