Hello. I was wondering if anyone could offer me any help/advice on my 9 year old daughter's new diagnosis of hypothyroidism. I was so sad to hear the result and realising she now has to take medication for life is heart breaking. And with all the other aspects of it all. I'm just so worried.
I just want the best for her and to make the process easier. Apparently she is starting on a low dose for her body to get use to it, the in 2 weeks time they are making it a lot higher.
All help and advice would be really appreciate.
Thank you for your time to read this..
Amelia's mommy x
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AmKH
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Try not to think of your daughter's prescribed thyroid hormone as an artificial drug or medication. It is a replacement for the hormone that her own thyroid is now unable to produce in sufficient quantities. As long as the dose she ends up on is adequate to replace what she can no longer make she is likely to live a perfectly normal life.
Don't assume that she is doomed to have an awful life. Most people with hypothyroidism do well on Levothyroxine.
Hi humanbean. Thank you for your message. It's Levothyroxine she's on. She's back in 5 weeks for more bloods. I just want to try and understand it more so I can help her more. Thank you again for your reply x
At the moment it's 50mg. Before we left the hospital they told me that they'll phone me in 2 weeks time to send me another prescription to increase the dose. Is this normal at the start of diagnosis?
3) If TSH is above 1 then add 25mcg and take the new dose for 6 - 8 weeks.
4) Get tested again.
5) If TSH is above 1 then add 25mcg and take the new dose for 6 - 8 weeks.
Keep going in this cycle of testing after 6 - 8 weeks of being on a particular dose and then increasing dose by 25mcg per day if TSH is still too high.
Some things to consider :
1) Doctors often won't raise dose once TSH is within the reference range. Some won't raise dose once TSH is middle of the range. The top half of the range is far too high for good health though, and doesn't reflect what happens in healthy people.
See this link for more info on TSH in healthy people :
2) TSH might be considered (by doctors) to be the gold standard test for thyroid function. But TSH is actually produced by the pituitary not the thyroid, and isn't a good indicator of how well people actually feel. (Strangely enough, asking people how they feel works much better, but many doctors don't like doing that.)
3) The thyroid produces two main hormones, T4 and T3. The best tests of these are referred to as Free T4 and Free T3.
T4 is the main hormone produced (in terms of quantity), but it isn't the active hormone. It is the raw material required by the body to make T3 which is the active hormone.
Low T3 leads to --> Hypothyroid symptoms
High T3 leads to --> Hyperthyroid symptoms
4) Free T4 and Free T3 can both be tested for, and should be, ideally, at the same time that TSH is tested. But with money so tight doctors often just stick to testing TSH, which is hugely annoying.
5) The thyroid produces about 20% of the T3 required by the body (although it varies quite a bit from person to person).
The remaining T3 required by the body is created by conversion of T4 to T3. That conversion happens in the liver (mostly) and other organs e.g. the kidneys and the gut, plus other places.
There is loads of other stuff you really need to know, but that is probably enough to be going on with.
One very important point...
People with hypothyroidism tend to develop gut problems because of LOW stomach acid. This presents itself with indigestion and heartburn which most people associate with high stomach acid - they are usually wrong. The best way of dealing with these gut problems is to improve the levels of stomach acid, not to decrease them. You would need to ask about this if the situation arises.
Whatever you do, don't let your daughter be put on stomach acid suppression tablets like ranitidine or PPIs like omeprazole or lansoprazole - they just make everything worse. You need to understand what is going wrong with the gut in hypothyroidism first, and to know that there are other methods of dealing with the gut which are far healthier.
As a result of low stomach acid hypothyroid people often can't absorb nutrients from their food very well and levels of vitamins and minerals can become deficient. So keeping tabs on nutrient levels is an important part of treating hypothyroidism.
The amount of training that doctors get on the workings of the thyroid is absolutely paltry. An afternoon at most, apparently.
As a result, the risk of being given misinformation is high, and it is not uncommon for informed and educated patients to know more about the thyroid than the doctor does.
All blood tests have to be at the earliest, fasting (she can drink water) and allow a gap of 24 hours between last dose of levo and the test and take it afterwards. This procedure keeps the TSH at its highest as that seems to be the only result doctors look at. It is from the pituitary gland and tries to flag the thyroid gland into producing more thyroid hormones.
Usually we take levo when we get up with one full glass of water and wait an hour before eating. Some prefer a bedtime dose. In the latter case, miss this dose if having a blood test next a.m. Take it after test and bedtime dose as usual.
Wow so informative and kind as always! This site really is good for information and support. My only advice would be never increase or decrease by more then 25 and then wait 6-8 weeks before changing after a blood test.
I would take 1/10 of goal dose and increase it every few days to avoid troubles. After beeing on rain person come under Niagara falls.
Check iodine. I would do all thyroid hormones and 24 hours urine iodine test. Lack of iodine is the wort thyroid trouble and has horrible consequences. Expecially for girls. Educate yourself. Don't believe anyone or anything even yourself. Check. Test. Prove. I apologize to talk of things which doesn't have direct connection with you answer.
Hi, Sorry to hear about your daughter's diagnosis. I have read a lot about anything to do with thyroid etc etc. Everything I read was too late for me since I have Hashimoto already 18 years but only found I have Hashimoto four years ago. My GP never bothered to tell me. So I always thought I have only hypothyroidism, that's it. Anyway, I read that if you do acupuncture from the very beginning, you may be able to heal the thyroid completely without medication. I read that it worked for a lot of people.
Once you start medication, it's much more difficult to recover, if not impossible. Also, nutrition modification and supplements with the help of alternative medicine practitioners may help. As a first stage, I would try alternatives and only as a last resort I would give medication. Good luck.
Hi uchi - Hashimoto’s is the most common type of hypothyroidism and treatment is the same, so you haven’t missed out.
As with all autoimmune disorders they can fluctuate, giving a false impression of improvement or cure. However if the disease process is still active or if (in the case of Hashimoto’s), the thyroid can no longer produce an adequate supply of thyroxine, then replacement hormones will be needed.
I am a firm believer in acupuncture as it has helped with the variety of autoimmune conditions I have, but when it comes to a hormone that every cell needs to be able to function, I can’t see how replacement therapy can be avoided.
Sorry, but I strongly believe there are other ways. When i listened only to GP's and endocrinologists, I could barely walk, and they didn't care as long as the THS was in range. There are too many stories like mine To cut it short, I went to a functional GP as well as acupuncturist and with his instructions stopped dairy and gluten 3.5 years ago.I also had allergy tests (found a few). Anyway, I am another person, much healthier and happier. Though I still take Levo and T3, dosage was reduced and so were the antibodies levels. Also, it's unclear from the post whether she Hashimoto or not. If she doesn't, that's all the more incentive for alternative approach
First, if you are saying that you read something, please identify what you read and, where possible, link to it.
Anyway, I read that if you do acupuncture from the very beginning, you may be able to heal the thyroid completely without medication. I read that it worked for a lot of people.
Second, hypothyroidism in childhood has the potential to cause profound effects on development. Do you really suggest that someone defers treatment, and allows developmental deficit to accumulate, in order to try unproven acupuncture, nutritional modification, supplements, etc.?
(That is not a general anti-acupuncture statement, but very specific to this case.)
Of course, proper nutrition, whether involving food or supplements, is a cornerstone of development and health, but I seriously question delaying treatment.
I have been treated in four countries. The worst was in the UK.
The sources I have re-alternative are in Hebrew and Japanese. So, if you can read any of these, I can send the links.
The following are some English-language sources, with Thyroid pharmacist book an excellent source: Hashimoto’s Thyroiditis: Lifestyle Interventions for Finding and Treating the Root Cause
I think there are major issues involved with regards to replacement therapy/medication such as osteoporosis, high cholesterol issues etc. Endless.
Living your life with all the ups and downs of thyroid-related conditions, issues and potential side effects, instead of trying another way is a personal choice (yes, even in medicine there is choice).
From my experience, one thing is clear, most doctors, whether GPs or endocrinologists, are to a large extent clueless at the multiple symptoms, issues and relations of all the elements people suffer from, when it comes to thyroid. So, for example, if you suffer from osteoporosis, most doctors will not mention that, actually, it may be related to thyroid hormones. I never heard such thing from a doctor. I found it by reading. Same for my Rosacea ("ROSACEA IS ASSOCIATED WITH THYROID AUTOIMMUNITY: A CASE CONTROL STUDY" ncbi.nlm.nih.gov/pmc/articl....
Lastly, the only reason I wrote is because sufferers and alternative practitioners are much more advanced than GPs and endocrinologists are in this area of medicine as evidence from people's testimonies and my own experience can attest.
uchi, You make many valid points. Adults can read your suggestions and make their own choices and decisions with respect to their own health and wellbeing.
However, when it comes to young children it's not that easy or clear cut. Not giving thyroid hormone replacement to a child with definitively compromised thyroid production of their own, is very risky, because this hormone is essential to the continuing development of the child both physically and mentally. As the adult in charge of such a child, it's a huge responsibility to make such a decision on their behalf.
"Once you start medication, it's much more difficult to recover, if not impossible." This is simply not true. Thyroid medication (i.e. levothyroxine) is a hormone replacement. It is not a drug in the pharmaceutical sense. And taking replacement hormone does not permanently negate the ability of the thyroid gland to recover or produce the hormone by itself.
Personally, I am a bit worried about people here claiming that they can cure hypothyroidism and get their own thyroid gland to function normally again with all sorts of unproven methods, be it acupuncture or something else. Some even seem to advocate not starting or going off thyroid meds. But I have yet to see reliable studies backing up the claim that a person with Hashimoto's can live a drug-free life or, to put it differently, that damaged thyroid glands can regenerate.
It is possible to treat Hashimotos with alternatives, but only before the thyroid hormones are affected. I had high antibodies, but good T4/T3 levels when I was first diagnosed, and I manage to control Hashimotos with diet. If my TSH were above range and T4/T3 low (as is likely the case here) it shows the thyroid is damaged and that damage would never heal to allow you to live a life without medicine.
Trying to avoid taking the medication when it's needed is a sure fire way to develop other issues, such as heart disease, inability to fall pregnant, and many more issues.
I was seven years old when I got diagnosed, I’m now 24.
Taking tablets for the rest of your life does seem scary but it becomes a part of your routine and it’s fine! Get her a pill box so it’s easier for her to remember.
When I was younger I couldn’t swallow tablets so I used to chew them, this was also fine.
I was lucky in that my mum also had hypothyroidism so she recognised when something was wrong more quickly.
I will mention that something I never knew until I got older was that you should take the tablets before breakfast on an empty stomach and never take them at the same time as iron tablets as they interfere. (My doctors didn’t tell me this, I found out after I had been doing it for months)
Honestly sometimes it sucks, but be supportive!
When I was first diagnosed, I was having blood tests every 3 months for a couple of years, this got reduced to 6 months. When I was 16 it became every year and I started seeing my gp instead of going to the hospital.
She will probably have to miss some school for it with all the tests and check ups which kinda sucks (I liked school).
If you ever notice she’s acting more tired than normal, take her to the doctor. (When I was a kid, I would be falling asleep in class and in my dinner.) This was a good indication that my dose was too low.
Wow.... Thank you all for your help and support. I'll have to reread everyone's comments to I can process all the information. I understand everyone's situation is different, but I just want to gain as much knowledge as I can to help my little girl. I remember from the report the her TSH was really high and her free T4 was really low. It makes more sense now why she's been poorly and not with it. Her hair just keeps falling out. It hasn't help recently that she's had a viral infection, so she's been feeling really pants. I was amazed on how quick the hospital was to get the ball rolling. Any other suggestions would be great.
And Emily... Thank you for your advice for when you was younger with the condition. That was a good insight to the similarities you both shared.
It's available as a paperback and a Kindle file (and you don't need a kindle to read kindle files). If it interests you, make sure you get the second edition.
Strongly suggest you have a full thyroid panel on her, which includes the antibody tests: TPOAb and TGAb. If she is harboring Hashimoto's autoimmunity, you need to figure out what is causing it. If she is being seen by a GP, that may not be your best choice unless the GP's knowledge goes beyond diagnosing with TSH, and treating with levothyroxine.
Hi AmKH, just a couple of things I can share, dealing with paediatric hypo is slightly different to adult, my son is now 10 and has been diagnosed for 2 years, we are lucky to have an amazing endo for him. Hopefully you have been referred to an endo as GP’s are useless with adults let alone kids! They will probably want to keep tsh between 2-4 while she is growing as tsh naturally fluctuates while they are growing, most adults like to be at 1 or under but this is too low for most kids. She should have her dose upped/bloods tested every 2 weeks until tsh has come down significantly then be moved to 6 weeks to fine tune, then 6 monthly as she is stable. Too much Levo can make them very hyperactive and jittery. Once she is stable if she has a growth spurt keep an eye on her as she may need a dose adjustment, you get to learn the signs. Never be afraid to phone and ask if she can have a blood test, we have an amazing endo nurse who is our first point of contact and will leave a blood form at the phlebotomy reception if I’m worried.
Good luck, it’s a balancing act but she should start to feel better once everything is heading towards ‘normal’. I’m happy for you to pm me if you want x
Hi Beanieskeeper. Thank you so much for your message. I just feel so useless to her as I haven't got a clue. I know at the moment her TSH level is 50. So it looks like we've got a long way to come down. If she wasn't admitted to Pediatric assistant unit we wouldn't of known. I just don't want her to feel alone with any of it as I don't even know any children with the condition.
She's going to be seen at the hospital in 5 weeks time. In the mean time I've been told I'll get a phone call to up her medication. Feel a bit in of the dark with it all as I haven't really spoken to any specialist. Sorry for asking but what is an endo?
No worries, I was lucky (? If you can say that!) I am also hypo so I know how to deal with it but I can imagine It’s overwhelming if you have no idea!
An Endo is an Endocrinologist, consultant dr up at the hospital who deals with thyroid problems as well as things like diabetes. That’s hopefully who you will see up at the hospital. When they ring to tell you to go for more bloods ask if they would mind checking her iron, b12 and vit d levels as they can all be low in hypo children. My son is nice and stable now (apart from a broken foot but that’s another story 🙄) . His tsh was 100 when he was diagnosed but it came down quite quickly once the Levo was started (4-6 weeks he was around 10) and he felt much more normal. It’s so tough watching them suffer, she needs to rest obviously but also needs to do some very gentle walking or swimming just so she doesn’t seize up completely. Reassure her that her hair will stop falling out so much and will grow back, Bean wasn’t bothered but I know it’s a part I hate!
Oh no! Poor little man I hope he makes a speedy recovery ☺️. That's the only thing we haven't had in our household, is a brake. I'm glad there's some answers in all of this. She does get tired slot, but she goes swimming and does lots of activities. It's like she has all of the other symptoms except the weight gain... She's like a rake! I'll enquire about the extra bloods. Thank you z
Hi, can I ask how do you get a kid tested for hypothyroidism? I have hashimoto, and I have two kids, both of them very small for their age. I would like to have them tested but my gp said as it is not a visible problem, she will not do the tests. How can I find someone who agrees to test them? I am in Ireland. Thanks
I am afraid I don't know anything about thyroid testing in kids, although I assume it's the same as for adults - TSH, FT4, if you're lucky FT3, anti-TPO, and anti-thyroglobuline.
But what I don't understand is your doctor's comment about it not being a visible problem...as far as I know (and I've lived with Hashi's for over 20 years), thyroid disease is rarely visible on the outside unless you develop a goiter or bulging eyes or something like that. But most of us live with an under active thyroid for years, and the only way to find out is to order tests.
Can you get another doctor to order the tests for you if you're worried? Hopefully, others with hypothyroid kids can tell you more about the signs and symptoms to watch out for (if different than in adults, that is).
Hi adagaladriel. My daughter was admitted into hospital, so that's how we found out. I had a phone call from my go today to ask how she was and what they could do to help. I was very shocked. So far good after care.
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