I have a 24year old with Downs Syndrome who is on 25 mcg Levo , she says she "needs " Diet Coke and a coffee every morning to get her going . I thought this is what the Levo was suppose to be doing . ? Her problem has always been her weight but I advise a good diet and to continue with her dancing Slimmers World etc but she is addicted to this stuff and its effects to the extreme of begging in our small village !
I am a single mum who has to work full time so she has a PA to assist every day . Her moods are dreadful , periods last about a day , skin very very dry , scabs take ages to heal , she is depressed in the dark days so I have put her on antidepressant Citalopram 20mg which has helped I think .
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Ladyburge
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How long has she been on 25 mcg levo? No, it's not supposed to get her going in the morning. It is T4, a storage hormone, it doesn't do anything until it is converted into T3 in the body. But, that doesn't happen instantly. And, you have to be taking enough of it to convert to enough T3 to help.
The coffee won't hurt her, as long as she leaves one hour between taking the levo and drinking it. But the diet coke is a huge no-no because of the artificial sweeteners - she'd be better off with normal coke, quite honestly. But, if she was adequately treated with levo, she wouldn't need either - and probably not the antidepressant, either.
When did she have her last blood test? Do you have copies of the results? If so, post them here, with the ranges, and we'll be better able to help you. If not, ask for a copy.
Slimming World is really not a good idea. It is based on low/no-fat, which is bad. The body needs fat. And, if her weight-gain is due to her hypo, it will not help her to lose weight in a sustainable way.
Last bloods were 9/16 for my concern with polyuria /excessive thirst for Coke . The full blood count can back saying no action required however she did mention the white blood cells were lower than last time . HB A1c , thyroid test TSH& T2 , glucose non fasting GPsy yellow tube ? And a biochemistry profile inc U&Es & LFTs F1 all came back with no problems . My Gp just said it is the Coke that is making her fat and what ever she consumes on a daily basis I was fuming he had no sympathy for me and the daily struggles I endure all alone . Her diet is strict scrambled eggs on I buttered bread , chicken sandwich or pasta then a SW meal with me in the evening . Yes she does binge at the weekends but don't we all indulge then ?
What shall I insist for please, to help my daughter feel better ?
When she was born I was told she would be overweight but it spiralled when she went to college and sweets etc were accessible , since last year she has lost a stone with SW but it's interesting that she needs the fat and better off having full Coke rather than diet ! Also no one told me about taking Levo in the morning on an empty stomach as I have been giving all three meds together !
So, can you tell me what the TSH and T4 were? (They don't test T2.) It sounds very much as if she's under-medicated and her doctor is ignorant about thyroid.
Whilst diet coke will make you fat just the same as normal coke if over-indulged in, I doubt it's just that. (And that's another thing I've got against slimming world, they encourage artificial sweeteners - which can do a lot of harm - and I'm pretty sure there's some soy in some of the stuff they sell. Unfermented soy is an absolute no-no!)
But, before you go rampaging off to attack your doctor (although I'm sure you'd love to! )
a) post the last blood test results here with the ranges.
b) try giving her her levo on an empty stomach, and at least one hour away from food and drink apart from water (do not take with diet coke!) and two hours away from other meds. See if that helps any.
c) give that a go for six weeks, then go to your doctor and insist he gives her a test immediately! He should have retested six weeks after she started the 25 mcg. And, at the same time, ask him to test vit D, vit B12, folate and ferritin.
Don't forget to get a print-out of the results, and post them on here, with the ranges.
25 mcg levothyroxine is a very low dose. Dry skin is a very specific marker for hypothyroidism. It looks very much like she is undermedicated and there is a very good chance this is causing her other problems. A good diet, exercise and activities like dancing will all help as will Slimmers World provided she dosesn't overdo the dietiing (it can slow down the action of thyroid hormone).
You need to get hold of her thyroid blood test results and make sure the doctor prescribing the levothyroxine is on the ball as regards hypothyroidism, that they do a physical examination (skin, heart, reflexes etc) and optimise her treatment rather than just getting her 'in range'. Once her hypothyroidism is sorted out she may be able to gradually come off the antidepressants.
I have old test results which in 2015 were 2.31 ? Apparently this was border line so I pleaded to put her on them as I was desperate for results. I will go into the surgery and ask for copies of her recent tests and post them on here for you to see . Her bloods also came back ok . I asked them to test for the thirst / polyuria diabtetic condition but they didn't ask for a fasting glucose test which I thought strange ? Any more suggestions would be gratefully appreciated particularly as you mention she might be under prescribed on the levo which would make sense to me but how do you tell a doctor his own job ?
Well, I only really know the TSH, and that is too high. She needs an increase in dose. She also needs her FT4 and her FT3 tested.
I would suggest that you post another question, with these blood test results, because no-one much is going to see them here - this thread is too far down the list, now. But, someone will see a new post and be able to explain these results to you.
I have posted all results on Greygooses request previously to yours however I can only see TSH level is 2.23 (0.30-5.00) how will I know if antibodies for thyroid have been tested please ? Thank you
Thyroid tests usually consist of TSH, Free T4, Free T3, Thyroglobulin antibodies and Peroxidase antibodies.
I think the NHS only use TSH a lot of the time which doesn't give a clear picture of any thyroid issues.
If the 2 antibodies I've mentioned above are out of range, that would indicate an autoimmune disease which is more serious and needs monitoring.
Perhaps check with the GP if they've done any of these tests previously prior to putting your daughter on levothyroxine.
I have high TSH but everything else is normal. My GP has referred me to an endocrinologist because levothyroxine is not suitable for me.
It's also worth reading other people's posts on this forum, you'll get a good idea of what things you should consider. There are some nutrient deficiencies like iron and folate that can affect the function of the thyroid, these can be tested as well.
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