Thyroid issue in daughter, v serious, anyone with any experience?

[SirVixofVixHall]

My dd has just turned 12. She is whippetty thin and although she is often tired, we had put that down to school pressure and also started giving her iron as she is veggie. She has On the weekend DH noticed that her neck looked swollen, I took one look and could see it was a goitre. GP Monday morning bloods just through, God I am horrified, her TSH is 68 and her T4 is 5.7 I have Hashimoto's and when my TSH was 22 I felt dire, so I feel so guilty to have missed this. We are now being referred for an urgent appointment with a paediatric endo, it could be today but will probably be Monday. I am really worried, would appreciate any advice or experience, anything we need to ask/check/have tested etc.

Thank you op, but I was unhappy at school at that time well before I got ill so looking back at the time I was ill mainly remember how much my mum did to help me and hours spent chatting with her while I was home from school. Almost like a golden time once I knew what was wrong and had the right meds and it stopped being scary.

I think, as you say Sansculottes, that she is at least relieved to have a reason for her tiredness. She is upset about having a long-term thing though. Hard to have a diagnosis so young. She is still not picking up. We've now been given an endo appointment , but it isn't until early May. More bloods in a week I think.

Sorry, I intended to keep in touch with this thread. I'm sorry your daughter is going through this - that is a shocking TSH increase. Thyroxine has a 7 day half life, so once it has stabilised, it does help, but it can take a while to get to the right dose.

My 6 year old had her first dose this morning. The pharmacist said he had never seen thyroxine in liquid form in over 30 years in the job, so they have to order it in for her. She has had the worst time the last 8 days. She had her repeat bloods last Friday. Coincidentally, she was limping when she came out of school so I had the duty doc look at her, and we were sent to hospital as there was a big swelling. It was scanned on the Monday, and a lot of fluid around the joint. They decided it was probably just a post viral thing and sent us away. By the Wednesday more joints were affected, so they ruled out the post viral and now she is in pain all over. She ended up in hosp again struggling to catch her breath, but her vitals were fine, and all they found was a possible UTI. She is suffering so much, pain relief isn't working and I hate not being able to help. She has an endo review in mid-April and awaiting a rheumatology referral, but it's all so slow and it feels like her symptoms are being seen in isolation with no dots being joined.

Hypothyroidism can cause joint pain I think? I remember reading that somewhere. How horrible for your tiny little girl, and how frightening for you. I suppose they need to check for rheumatod arthritis? Mid- April is quite a way away, is there anyone you could see privately before that?
Dd has now been on meds for a month, but is worse. So upsetting and frustrating. She is emotionally all over the place, very anxious and emotional, and completely exhausted. She had a strop this morning when dd2 accidentally woke her up, she was sobbing "I am so tired".
tanya I really hope your little girl is feeling better soon, I deeply sympathise with you. Please keep me posted as to how she is getting on.

I'm sorry to read this tan. My experience as a 20 year old was no joint pain but terribly thin and weak. My thought was something else going on such as rheumatoid arthritis.

I do think that when your daughter does feel better, OP, her out look will be better and she will be able to rationalise it differently. At the same time it might benefit her to have some counselling - feeling so different from peers and an invisible disease is tough.

It takes time to recover as you know. I'd strongly urge you to support any kind of sport / exercise she then becomes interested in eg dance. I've found being a part of a physical hobby very helpful indeed, obviously tough at first, but gave me motivation to get better, maintain health and keep strong.

This disease weakens us so much; the stronger you are (when well) the quicker you can bounce back. I find yoga very helpful for shoulders and arms and thighs.

Hypothyroidism weakens and wastes the proximal muscles. Keep these strong.

To clarify; it's only as I near 40 have I experienced joint pain with hypothyroidism (when under).

Joint pain is a symptom - I've been hypothyroid for 13 years, but the swellings and number of joints involved are not something I've experienced. They know she has a form of arthritis, they just don't know yet whether it will be temporary.

Vix, sorry if you have said this already, but has your daughter has her folate and B12 checked? I got diagnosed as hypo after a long illness after glandular fever. The thyroxine didn't seem to improve matters, and it was exhausting getting doctors to take it seriously. They kept implying it was psychological. Then I found a more thorough doctor - my B12 levels were very low, and I also have pernicious anaemia. I have folate deficiency as well. Autoimmune conditions are a nightmare because of how much they affect, but so treatable once they have been diagnosed.

Also, I agree with Violet, keeping active is a physical and mental lifesaver - once your daughter is in a place to cope.

I am not sure if they checked her B12. The paed said her iron was "good" but I can't see the results on the print out we got from the GP so I'm not sure how he knew that. I need to check. I know it can take a while to feel much better, but it is worrying me that she feels worse. Personally, although I've never felt completely well since getting thyroid probs, I did notice a shift very quickly on thyroxine. I could feel small improvements from about day 4 on medication.

Stored iron is ferritin. Did that show on the printed results? It should be at least half way through range.

I would agree regarding ferritin, b12, folate and vitamin d.

For me there's a clear difference when my ferritin is over 70. It's been bizarre how quickly I notice if it's dropped. And I feel thyroidy.

I'm sorry to hear that tan that must be so hard for your daughter.

What I meant was that I developed thyroid issues very young and was underactive for a long time before diagnosis. I was so weak that my hands shook holding a fork. But I didn't get joint pain at that age. It's only 20 years later that I've started to get joint pain when underactive.

But I'm hypermobile so maybe joints didn't stiffen as much for me. Another reason why it hits me badly if I ever dip and why I focus on staying strong when I can.

Agree with violet re: vitamins. Also, never accept 'good' from doctors as they will say that even if results are bottom of range. You need to monitor levels as optimum levels aid absorption of levothyroxine. Less than optimum, especially low in range, can make you feel very unwell.

My iron (folate I assume) is 20 ish. Maybe why I feel so rubbish all the time. I am taking iron now.

Folate is folic acid. Some people cannot process the synthetic form so getting folate as metafolin can help. (Natural form). (I've only just found this out, no idea if I'm one of them but it can't hurt and it's a b vitamin, which are water soluble so get flushed out of not needed).

20 is rubbish to be honest. I found it enlightening that when I saw the print out for my ferritin, the normal range was 70+. 50 is borderline, mine was around that and I found I was much better as soon as I hit that higher level. I think for many people it's not a huge issue so gps don't bother, but it really can make a difference. (I used to think this was all bollox till I experienced it myself, educated by the good mn ladies).

This might just be me, and I was having tummy issues caused by the iron I was taking, but I discovered by accident and the support of a great gp that cutting out milk made a huge difference to my iron levels.

I did drink it all day in cups of red bush tea, switching to coconut milk and now oatley made the difference of +30 points in only 5 weeks. We were trialling coming off the iron to see what the drop might be in one month, while I looked at ibs things, one of which was a loose FODMAPs diet. I didn't expect it to go up!

I hope your daughter feels better soon. I remember how shit it was.

It might help her to learn about celebs with thyroid issues and see them now - Hilary Clinton, Rachel from steps, I think Ellie Goulding had a thyroid issue of some sort. There are a few athletes too.

Rachel from s club seven (prob doesn't make sense to her generation though!)

Duh, I meant to write ferritin, and wrote folate instead, sorry. Very stressful weekend!
Am very impressed by Hillary Clinton. Crikey, how could she have done that whole campaign with a thyroid problem? I can't even keep my house tidy!

You definitely need to get your ferritin up to at least 70. My low iron made me feel worse than my underactive thyroid and medication doesn't work well with such low iron. Remember not to take iron within 4 hours of your levo. You'll need a high dose supplement for a few months at least.

Hi OP,

I had thyroid cancer in 2015 aged 24 and had a thyroidectomy so I've been permanently hypo since then... As previous posters have mentioned, I also didn't feel any improvement at all (in fact I felt more drained & exhausted) for the first few months of taking Euthyrox after my surgery. It was not until the endo tested my ferritin (12!) and vitamin D (1.4!!!!) that we realised my main symptoms were being caused by that. Once I got the ferritin and vitamin D levels back within range, everything changed for the better. Definitely get your daughter's ferritin and vitD levels checked.

I'm now 21 weeks pregnant and immediately on finding out about my pregnancy, my TSH shot right up and the OB-GYN was quick to up my dosage of Euthyrox. It's absolutely essential for the healthy development of the foetus that the mother's TSH is below 2 during the first trimester, and then in from the second trimester onwards it should be below 3 as by then the baby has its own functioning thyroid too. I'm really shocked to read that you and others didn't have your thyroid conditions treated during pregnancy. In fact I believe testing for TSH, fT3, fT4 and thyroid antibodies should be compulsory in the first blood panel upon getting pregnant, because it really is vital for the healthy development of the baby.

Keeping my fingers crossed for your daughter that they find the right dosage to help ease her symptoms

When I was particularly tired while pregnant with dd2, I asked for my levels to be tested, my TSH was just under 9, but they still didn't treat me. How might it have affected my daughter from that pregancy? ( think my levels were not right when I was pregnant with DD1 either, but not as bad as with DD2.)

@SirVixofVixHall It's medically proven that having a TSH level above 3 during pregnancy massively increases the risk of passing on a thyroid condition to the unborn child, which can either present itself immediately in the newborn or develop later in the child's life. It can also affect (stunt) physical growth, and development of the foetus' brain.

Having untreated hypothyroidism in pregnancy is also linked to an increased risk of giving birth to a baby with Down's Syndrome or autism.

In terms of the mother's health it also makes her far more likely to suffer from postnatal thyroiditis, which is often misdiagnosed as postnatal depression.

There's a book called 'Your Healthy Pregnancy with Thyroid Disease' which is really interesting, and Dr. Isabella Wentz recently released an online docuseries called The Thyroid Secret, in which episode 7 was dedicated to the affects of hypothyroidism on fertility and having a healthy pregnancy.

That us wrong now according to guidelines. However I was very unlucky to be on the brand of thyroxine that was faulty in early 2012 when pregnant with ds. After 3 raises my tsh was still 13 by 12 weeks. I was very worried. He does appear to be absolutely fine and bright.

I think the antibodies are in the genes - hers have started young. Has she had antibody tests?

All babies get a thyroid test at birth as part of the heel prick test (I think).

The Down's syndrome thing doesn't make sense, as that is determined at conception, not during pregnancy. I am worried that my levels during pregnancy may have put my daughters at risk, even more so now that Dd has been diagnosed and has clearly had a problem for some time.
Yes , her antibodies were tested and are high.

Having untreated hypothyroidism in pregnancy is also linked to an increased risk of giving birth to a baby with Down's Syndrome or autism.

It causes cretinism, but only if you're not in any thyroxine at all, have hypothyroidism and iodine deficiency. So it's very rare these days. Cretinism is 'environmental' downs if subjected from birth, possibly also of baby's thyroid is also compromised.

There's a higher risk of miscarriage if tsh over 2.5/3 in first trimester - but I know of many who have been fine (myself included).

A slightly lower iq if untreated. But again, I'm not seeing that in my son, literally a few points. And there's different types of iq tests.