My 12 year old daughter diagnosed with hypothyroidism in march after having flu in January

Hi - my 12 year old daughter has been diagnosed with hypothyroidism in March of this year, we saw a paediatric endocrinologist and she's been on thyroxine 75mcg for 2months now - my daughter had flu in Jan & has never recovered her health. She was at the time underweight, fatigued, muscle cramps with a very fast heart rate. 2 months on and she's still struggling, her hair & skin aren't as dry & her weight is almost normal - my biggest concern is her poor exercise tolerance - she struggles getting up stairs sometimes and her heart races. Is this normal for hypothyroidism ?

We're due to go in for a synathecen test on Wednesday - can anyone advise on whether I should push her to do more or just let her be? School are being considerate & she attends mornings only as it was too much for her to do a full day - any advice would be appreciated....btw - her bloods showed no antibodies for hashimotos & not coeliac & no family history of any hormonal illness - actually no one on either side has any major illness. Up until my daughter was sick - she was a normal energetic child - physically very active, bright, happy and healthy - it's just been a complete shock as to how quickly that has changed

Look forward to hearing from you

Ps we are at the hospital on wed & Fri - so any suggestions on what I should ask would be appreciated

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  • Hi Kally

    It would be useful if you post the thyroid blood test results to give people a clearer picture. has she had her blood test rechecked - if not, she should have then redone soon.

    It could have been temporary thyroid issue with illness especially considering how it all started so abruptly but you wont know until new bloods.

    It would be worth getting her B12, folate, iron and vit D levels checked too to see if any deficiencies as often hand in hand with thyroid. When my iron is low (anaemic), I get breathless and heart palpitations and my heart rate speeds up when I'm Vit D deficient for example.

    If all else fails and you continue to get no where and she's still feeling bad, it might be worth going gluten free for three months to see if anything improves as it has been proven that the blood test is not reliable and can only be properly ruled out via endoscopy. Even so, she still might have NCGS which cannot be tested for.

    Hope she feels better soon :-)

  • Hi - thank you, she was borderline anaemic & Vit D was also low - GP had prescribed meds for these in Jan - because she continued to deteriorate, her tfts were done, late Feb & another lot early May.

    She was examined by the paediatrician and she palpated her Neck & said thyroid gland was enlarged..

    Will put up blood results later today. In terms of diet - It's relatively clean - we supplement her calorie intake with smoothies otherwise she really would be skeletal !

    In terms of mood - she's happy within herself - just fed up of being almost housebound.

    There have been several occasions where I have been called by school to collect & she visibly looks really unwell - white as a sheet - inability to hold herself up & nauseated.

    Her knee pains have improved - it's just the sudden onset of nausea and near collapsed state episodes which worry me - her heart rate is around 76bpm - but when she feels "off" it fluctuates between 104 - 136 (no fever) at rest & movement makes it go up to 160bpm - but she generally won't move because she feels so unwell.

    Anyways we do have 2 appts with her paed endo this weak - am hoping they can shed light on this

    How long does it usually take for hormone levels to normalise?

    Many thanks

  • Hello, I think it'd be worth checking out the symptoms of low thyroid in the context of chronic fatigue and P.O.T.S.

    According to Dr Myhill (an expert on CFS and thyroid), the symptoms will improve if you deal with the cause which is mitochondrial, thyroid and adrenal failure.

    drmyhill.co.uk/wiki/Hypothy...

    drmyhill.co.uk/wiki/CFS_-_T...

    I think it's essential to get a full panel of thyroid bloods including rt3 and total t3. It's quite likely that your daughter's not tolerating the thyroxine very well (poor converter).

    A subset of young women with these problems can also get Postural Orthostatic Tachycardia Syndrome, or P.O.T.S, which is what I suspect your daughter has in addition to low thyroid. For some reason, it's treated like a completely separate illness, but the causes (mitochondrial, thyroid and adrenal failure) is pretty much the same.. so reading up on diet, activity regimes and supplements to support the endocrine glands will certainly help. Please don't let anyone tell you that it's purely psychological!

    potsuk.org/

    A 24 hour ECG would be very helpful to clarify the cause of the tachycardia. Heart problems in young people should not be ignored.

  • Thank you for your advice - no one has suggested psychological cause as of yet - shes quite motivated & optimistic that her "normal" life will resume within a few months :)

  • At the age of 12 (25 years ago) my daughter had very similar symptoms. You could be describing her! She was dumped under the ME/CFS umbrella, and since it has never been in her nature to give in she pushed herself to carry on. Long story shortened, it wasn't until 4 years ago that we discovered the reason for her multiple symptoms and endocrine dysfunction, but we had to travel to the USA for diagnosis and treatment. We had many wasted years of expensive thyroid tests and visits to recommended thyroid doctors - none of them had the answers. I can let you have information about how we finally found answers if you PM me. Jane x x

  • Dr Myhill wrote her book about CFS only recently and her methods do seem to be heading in the right direction. It's taking the juggernaut, that is the NHS, a long time to pick up on them though and they still think that CBT is the answer!

    More recently, there's been a lot of research (in the USA) into Mast Cell Disease being behind a lot of these problems. One of the supplements used for it (Acetyl-l-carnitine) is mentioned in Dr Myhill's book. Also, MTHFR mutations which mean that we require the methylated forms of B vitamins that we cannot otherwise absorb. (I had CFS as a teen too, but I've joined up the dots now!)

  • One of the conditions that my daughter is now being treated for is MCAS - have you seen Dr. Lawrence Afrin's book "Never bet against Occam" - it's brilliant? She is also at last getting correct methylation treatment thanks to her US doctor, as well as treatment for all her complex chronic illnesses. The last four years have been a huge learning curve for us but we are at last seeing positive results. I wrote to Dr. Myhill about our US experiences and she wasn't interested, so it's great to see that she is now changing her mind.

    My daughter was offered CBT and anti-depressants! She turned down both as neither was relevant for her. I do so hope that the NHS (or hopefully whatever replaces the useless NHS) will wake up soon to help all those trapped in the ME/CFS nightmare. Jane x

  • It is possible to get a genetic test done in the UK for genetic metabolic mutations - I think its useful benefits would be limited as most doctors here wouldn't have a clue how to interpret them at the moment. However, they do give us some insight into what's behind a lot of our symptoms.

  • They are likely to slap ME /CFS label on her be careful

    do be very very careful to ensure not one piece of cookware is aluminium or non stick or foil no cans of drink and check what your water treatment plant uses they may use alum or aluminium or flouride

  • I agree that the ME/CFS label is not ideal.. because the NICE guidelines more or less used to tell GPs to give up on anyone with it! Fortunately, some doctors who are really good, have got wise to this nonsense and know a bit more about what to do with young people that have it. It's certainly better to get a referral to a consultant that specialises in this area than be left hanging out to dry.

  • We're under the care of a paediatric endocrinologist, there has been no suggestion of CFS/ME or psychological diagnosis - they can see my daughter is visibly unwell - my GP is excellent & very supportive - am hoping things do settle down as we are told to expect 6/9 months before everything normalises!

  • I am sorry to hear about your daughter, she is really too young to have to suffer with this. Others have posted links to Dr Myhill, I think your doctor is doing right thing testing blood cortisol and possibly ACTH STIM test. He needs to rule everything out. It might be worth seeing what your daughter's sodium & potassium levels are, it can often be out of balance and cause dizziness & high pulse on standing. I find coconut water quite helpful with this. NHS is poor with complex cases like this & will label with CFS/ME and then abandon you. I used Dr Myhills book to help my recovery, it's a really good source. Wishing you wellness

  • Hi,

    Just to add that there's a lot of info about B12 issues on the Pernicious Anaemia Society forum on HU where I normally post. Quite a few on PAS forum also have thyroid issues.

    B12 issues can affect young people.

    b12deficiency.info/children...

    B12 Deficiency Symptoms

    pernicious-anaemia-society....

    b12deficiency.info/signs-an...

    Coeliac Disease

    "btw - her bloods showed no antibodies for hashimotos & not coeliac "

    I've read it's possible to have Coeliac disease even if Coeliac antibody test comes back negative.

    coeliac.org.uk/coeliac-dise...

    nice.org.uk/guidance/ng20

    I am not medically trained just someone who has struggled to find out what is wrong with me.

  • Just a thought but is it possible that your daughter had a glandular condition with the flu in which case it could take a couple of years to go not helped by her thyroid problems.

  • Ruled out Epv - B12 levels are normal - vit D almost normal

  • "Will put up blood results later today"

    Hi,

    Might be worth putting blood results for folate, ferritin, B12 and full blood count (FBC) on Pernicious Anaemia Society forum.

  • "B12 levels are normal"

    I have read that it is possible for people to have severe b12 deficiency with normal/within range B12 levels.

    In UK, the "BSH Cobalamin and Folate Guidelines" emphasise the importance of treating people who are symptomatic for b12 deficiency even if B12 result is within range.

    b12deficiency.info/what-to-...

    b12deficiency.info/b12-writ...

    b-s-h.org.uk/guidelines/gui...

    More info on PAS forum on HU.

    Have you seen the B12 results or were you told they were normal?

    Has she had recent tests for folate , ferritin and full blood count (FBC)?

    I learnt from experience to always get copies of all my blood test results after being told everything was normal then finding abnormal and borderline results on the copies.

  • Have copies of blood tests & her blood results fall into normal range apart from tfts & Vit D - I have B12 deficiency treated with injections - so it was the 1st thing that came to Mind - but thank you - will probably supplement after results from blood tests this week :)

  • Have a look st the Thyroid Uk site as well. Lots of thyroid help there and it may prompt questions you would like to ask.

    On the exercise front I would suggest only gentle exercise, walking, till you know a little bit about what the problem is. Exercise uses up T3 and as she could already. E low in that better not to use it all up at once by over doing the exercise until she feels some improvement. At least she seems to be in good hands.

  • Thank you - I do feel the care we're receiving from the NHS is good - but their time is limited & deal with the medical side - but a little reassurance that we are doing all we can from people who have similar experiences may help us remain optimistic :)

  • Here are the blood results for my 12 year old

    She's 161cm tall and weighs 45kgs

    1st blood tests on 22/2/17 after a 7week history of increased fatigue & weight loss.

    Vit D 28 (50.00 - 140.00)

    Tsh 29.21 (0.51 - 4.30)

    T4. 8.5 (12.60 - 21.00)

    Ferritin 21 (13 - 150)

    Hb 111 (110 - 140)

    B12 - 521 (252 - 1125)

    Potassium 4.1 (3.5 - 5.3)

    Sodium 142 (133-146) - she had already been on a months worth of floradix & 400iu of vit D as well as a rehydration tonic after flu first week of Jan

    31/3/17 consultant endo started on 50mcg of throxine & continues on floradix & vit D supps

    Blood results for 28/4/17

    2.39 (0.51 - 4.30)

    9.9 (9 - 23)

    TPO antibodies negative

    Coeliac - negative

    Serum iron 8 ( 7 - 27)

    Vit D 48.4 (50 - 140)

    Thyroxine increased to 75mcg on 7th May 2017 &Ito continue on floradix & vit D supps

    Her exercise tolerance is really poor in that she can't stay standing up for more than 5-10 minutes - walking up stairs at times leaves her tachycardic & complaining - every few days she says she feels nauseated (can't see a trigger or a pattern) - she looks very pale in that her freckles stand out & her pulse is rapid irregular & weak...that's when I worry - but keep a calm head so as not to alarm her - we have more tests on Wed - fingers crossed it's just the hypothyroidism & it's taking time to fix up.

  • I'm surprised she hasn't had a full blood count (FBC) or a folate test

    FBC

    labtestsonline.org.uk/under...

    Has the GP checked for diabetes?

    diabetes.org.uk/Diabetes-th...

  • It's good to rule out the basics first I think. I definitely think she should continue to be treated for low iron and causes symptoms mentioned so maybe she'll feel a little better once her levels are better. However, iron supplements can cause havoc with the stomach especially if been ill and sensitive anyway. Ferrous sulphate are the worst but ferrous fumerate is a little easier on the stomach or iron infusions if necessary to get her levels up. Also maybe eat with porridge if possible as this help my stomach or vit C drink. I've no experience with floradix so not sure how effective or if has the same side effects?

    I do really think that Vit D dose should be much higher.

    Electrolytes can be totally off whack after being really ill so might be worth checking some of her other ones like calcium etc and making sure all okay and certainly folate - not sure why they haven't done this yet?

    Having nausea and a restricted diet with the smoothies after being so ill could mean she's deficient in many of the smaller items not normally tested for like zinc, magnesium etc etc so it might be worth using a website like cron-o-meter for a couple of weeks to input all the individual ingredients you're using and even the supplements. This site tracks all vitamins and minerals to see if anything obviously missing from the food she's eating. Iodine especially too as this can really cause havoc with the thyroid along with selenium.

    Hope she feels better soon and I'm so glad she's remained optimistic :-)

  • Thank you, we are at the hospital on wed & Fri & will discuss her nutritional needs with them - at this stage am scared to do anything as she has been deteriorating - she was on 5 mornings a week at school & we're lucky if she gets there for 3. Her sleep is all over the place. After school she's like a zombie and in bed by 6pm - which makes it difficult to ensure she is well hydrated & fed properl..which is why I've resorted to smoothies - she's also a vegetarian - but likes lentil curries etc - we'll soldier on - thanks for taking time out and writing back - in regards to her bloods - only put up results of those that were on lower side or abnormal - she's had a tonne of bloods - but not glucose or checks for diabetes

  • I do sympathise, I stopped going to school at all from 13/14 as simply couldn't get out of bed anymore and took decades to work out the issues as the gps etc were useless. Although they're weren't sites like these around in those days so shouldn't be the same for her and fingers crossed it's just temporary after a very bad illness :-)

    Do check her diet if sufficient iodine in there especially if no thyroid antibodies as vegetarians will have less anyway without fish etc and if not eating much dairy etc and is often overlooked and not tested for and is actually the largest cause of thyroid failure globally x

    Good luck :-)

  • W.r.t iron levels: I've had iron deficiency on and off for most of my life since puberty. Iron requires Vitamin C and riboflavin (B2) to help it get absorbed. If your daughter's a veggie (who doesn't like cheese) she may be deficient in B2 which would make iron absorption even more tricky.

    healthaliciousness.com/arti...

    A symptom of iron deficiency anaemia is tachycardia. Noting your daughter's age..her periods could be very irregular and heavy with the low thyroid which would exacerbate the deficiency (similar to what I've experienced in early menopause). Taking p-5-p (B6) could help a great deal - again it's a vitamin that she may be low in due to being veggie. Like iron, it requires B2 to work especially if you take B6 in the inactive form.

    healthaliciousness.com/arti...

  • Quote from study into riboflavin...taken from the following link...

    lpi.oregonstate.edu/mic/vit...

    "Iron

    Riboflavin deficiency alters iron metabolism. Although the mechanism is not clear, research in animals suggests that riboflavin deficiency may impair iron absorption, increase intestinal loss of iron, and/or impair iron utilization for the synthesis of hemoglobin (Hb) (13). In humans, improving riboflavin nutritional status has been found to increase circulating Hb levels (14). Correction of riboflavin deficiency in individuals who are both riboflavin and iron deficient improves the response of iron-deficiency anemia to iron therapy (15). Anemia during pregnancy, a worldwide public health problem, is responsible for considerable perinatal morbidity and mortality (16, 17). The management of maternal anemia includes the supplementation with iron alone or iron in combination with folic acid (18), and it has been considered that riboflavin supplementation could enhance the iron-folic acid supplementation. Randomized, double-blind intervention trials conducted in pregnant women with anemia in Southeast Asia showed that a combination of folic acid, iron, vitamin A, and riboflavin improved Hb levels and decreased anemia prevalence compared to the iron-folic acid supplementation alone (19, 20)."

    This could help you get on top of those VERY low Hb levels..

    It'd be miraculous if doctors here knew about this very useful information.

  • Thank you all - noted, will discuss nutrient deficiencies with consultant & ask if a dietician referral may help

  • Be warned though..most doctors in the UK aren't that clued up on nutrition...it's just not part of their training. In the States they've got functional doctors that do know a great deal more - and many have written books about how they all interact and can be taken to optimal effect.

    Having said that, there are some that go a step too far in certain 'therapies' that claim miracle cures and can make functional medicine come across as completely kooky and dangerous to a traditionalist with a classical training.

    It's therefore important to tell our doctors that we expect we may have some deficiencies for reasons that are reasonably logical to them e.g. poor gut absorption due to low thyroid; veggie diet; stress / over-exertion using up our stored minerals and vitamins; blood loss due to heavy menstruation.

  • Hi Your daughters story sounds a lot like mine. I had a virus in oct was diagnosed hypo at the same time, I have raised antibodies but despite thyroxine I am not recovering well at all. I have fast heart saw cardiologist had echo, stress echo, bp monitor and 2 week cardiac recording all showed either normal or sinus tachycardia aprart from that I had a 7 second episode of AF so am awaiting further investigation from a cardiac electrophysiologist . I get physically drained so easily!! Thinking a lot at work overwhelms me during bad spells. Gp says I'm in need of dose increase. Tsh is 6

    I'm at my wits end, I wish your daughter well soon

  • It's a long road isn't it...thank you & pray you get your symptoms under control soon too :)

  • Believe me your daughter CAN get better. :-) the fact that she's young means she'll respond to minor changes far more quickly than an adult.

    This link is also relevant.

    drmyhill.co.uk/wiki/Heart_D...

  • Hi richard123, your high tsh could be down to having very low t3. I'd really try and look into getting a full panel of bloods done. T4 alone is not a miracle cure.

    In the meantime please check out Dr Myhill's website.. I honestly think you'd benefit from the advice on her site.

    drmyhill.co.uk/wiki/Heart_D...

  • Thank you, 'm having T3 blood test today but took my thyroxine this morning does it matter? t4 and tsh was done fasting last week

    Thank you

  • If it's just T3 that they're testing, then it may be ok... the T4 would make a difference to your tsh and t4 though...

    It's easy to forget to skip it once you're in a routine. Just make sure that you let the endo know!

    My thinking is that conversion is key to success with T4, so having reasonably good starting levels of vit D as an absolute minimum. Personally, I believe that magnesium and (methylated) b vitamins are good too. Also, starting on a low dose and gradually building up.

    hashimotoshealing.com/5-key...

  • Your daughter's symptoms sound more akin to hyperthyroidism rather than hypo - racing heart, weight loss etc. but the thyroid blood results say other wise. The ferritin, iron and vitamin D are all very low/deficient - those are required for the thyroid to function properly so it would be good to supplement those. I'm surprised the doctor only advised 400iu of vitamin D - that is no where near enough. When I was vitamin D deficient my doctor prescribed me 10,000iu capsules. Would also be worth taking B12 as well (get the methylated kind that is more natural) as ideally B12 should be around 700.

    TPO is often negative, they should also test the anti-thyroglobulin antibody levels.

  • It took me about four or five years to find a thyroid hormone replacement that suited me.

    I feel for your young daughter as doctors aren't knowledgeable in the UK, I am very sorry to say.

    75mcg levothyroxine for two months isn't much and thyroid hormones run our whole system but levothyroxine is T4 only and has to convert to T3, which is the only Active thyroid hormone - T3 is required most by the brain/heart. and the billions of energy cells in our body. If we do not have sufficient a test will confirm but doctor usually says bloods are 'fine' but they may be somewhere in range and not, most likely, 1 or under 1.

    No one understands that the chronic fatigue that can go along with hypo and is very debilitating and our body will not work as it used to.

    I would ask doctor/Endo to give your daughter a Full Thyroid Function Test, i.e. TSH, t4, t3, Free T4, Free T3 and antiodies (if antibodies haven't been taken). B12, Vit D, iron, ferritin and folate. If not you can have a private one from a recommended lab. It is pin-pricks I believe by post.

    Blood tests for thyroid hormones have to be the very earliest possible, fasting (she can drink water). Also allow a 24 hour gap between the last dose of levo and the test and take afterwards. This allows the TSH to be at its highest and may prevent doctors adjusting her dose due to a 'low' TSH. Many need a TSH 1 or lower to be able to have relief of all symptoms. Heart can struggle if underdosed, and fast heartbeat can also be due to being underdosed. Fast heartbeat can also be due to too high a dose but that's not veryk often.

    Levo should be taken on an empty stomach with one full glass of water and wait about an hour before eating. Usually when we get up is usual but it can also be taken at bedtime as long as stomach is completely empty about 2.5 to 3 hours if the meal contained protein. If hypo our digestion is usually slower as well

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