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.

If you can afford a private appointment at around 175£ I think you should see an paediatric endocrinologist privately. It could take months with the attitude of her paed. The TSH under 10 suggestion demonstrates next to zero understanding of your daughters thyroid issue. I know you want to get her well quickly and how frustrating it is, but you'll get there with the right help.

Try posting on this forum healthunlocked.com/thyroiduk.

No expert although I have underactive thyroid which was diagnosed during my first pregnancy and also not treated (so angry when I found out the facts). I read the research listed in the NICE guidelines and I don't believe there is a known link with childhood thyroid issues - I think it can cause issues in a baby (which would be detected immediately) and there was some stuff about growth/learning which they couldn't separate out from the fact that it can cause premature birth (so that could be the causal factor), so in short, try not to worry. It is hereditary, so likely that's all that's caused it to appear so young.

Have a read of the NICE guidelines - they'll also tell you what tsh they should be aiming for etc. It's totally just a hunch but I would guess that a child would likely feel totally different to an adult with the same tsh levels.

Also, it's a meagre bright side I know, but Hashimotos is typically so gradual an onset that people go years feeling crap before it's diagnosed. Your daughter won't experience that.

I am so grateful to everyone who has posted. I am so worried about her. She was back in school today but is very tired and cold. We initially tried to get a private appointment with a paediatric endo as suggested above, but the two suggested people both only do NHS treatment. We went private for the scan to speed things up, and would happily see an expert privately for the same reason, but can't find one. I wonder if she would do better on natural dessicated thyroid for a start, but I can't find info that relates to children.

What dose of Levo is she on? It takes about 6 weeks to feel the effects and if she's only on 25mg she'll need it raised next test.
This is the test that gives the full picture bluehorizonmedicals.co.uk/epages/89289b91-b6f9-4318-864a-f492cbae7827.mobile/en_GB/?ObjectPath=/Shops/89289b91-b6f9-4318-864a-f492cbae7827/Products/PR233
Vitamins and ferritin need to be optimal for Levo to work at it's best and most of us thyroid sufferers need to supplement.
I posted my results in the healthunlocked/thyroiduk site for advice which gave me the confidence to push for t3 medication. You really need to know her full results and make sure her dose is increased until her TSH is around 1 and ft3 and ft4 are near top of range, or at least she feels well!

She is on a 25mg starting dose. She is slighty framed, tallish, but not very heavy. She has only recently turned 12. I don't know why they didn't do a full thyroid profile, as she is so young it seems particularly important, but they only ever do TSH and T4 for me too, so perhaps it is the area we live in?

It's very hard to get ft3 done in the NHS. My GP said even if he asks, the labs don't test it. My endocrinologist tests it though. I went private as I wanted to feel better quickly. You can get your ft3 tested on its own, privately.
Some people feel worse in a starting dose. I think it's to do with your TSH having flogged your thyroid so hard kind of gives up a bit when you get a little thyroxine. I felt terrible on 25mg and my TSH was only 4 with my ft4 in range. Little did I know then that my ft3 was well below range! I dont convert ft4 to ft3 well. My GP understands this now I've been tested and is giving me the meds I need. It's so frustrating that you have to get the tests done yourself to stand a chance of being treated properly. If ferritin, b12, folate and vitD are also very low in range, it takes time to build it all up. That's where testing really helps to understand what you need to do but the NHS don't do those tests without a lot of pushing 😐.
It's so important to get a print of your results too. They would tell you you're normal range, no further action, if your ferritin was 15, but you'd be so exhausted.
My surgery know I'll want a print out of every test now

My ferritin was 22 when last tested, I am always tired. Apparently dd's iron levels were "good" , i will check what they were. I don't think they tested her B12, or vit D.

It sounds as though you might need to investigate your treatment too. My TSH needs to be under one and tf4 around 20 plus ft3 over 5. Normal range means nothing when you aren't well. I've had a very frustrating 9 months.
Your daughter will need her dose increased soon so perhaps get her tested after 4 weeks on levo and maybe be increased to 50mg Levo. I hope you manage to get her properly tested and look after yourself too!

I know it isn't helpful now, but just wanted to add how appalling it is that your doctor didn't treat your underactive thyroid in pregnancy. I developed an underactive thyroid when I was pregnant with dd2, which was found after I started getting itchy legs, so my dr sent me for bloods for thyroid and liver function. When the results came back, he rang me straight away & said I needed to start thyroxine. I said I'd go the next day, and he said no, you have to start it today! This was private though, which I guess makes a difference.

All the best for your dd. Not sure where you're based, but if you're looking to go private, the Portland Hospital in London has some great consultants. We haven't seen a paediatric endo there, but we've seen other specialists there, and always been very impressed.

I had itching all over in that pregnancy, really badly- I wonder if that was connected to my thyroid? I was told that TSH is "higher in pregnancy" I went back and forth to three different GPS telling them I felt my thyroid wasn't right, for TEN years, and they all said "your levels are fine". Not one tested me for antibodies. I was only put on meds once my TSH finally went up to 22.

Oh and thanks for the rec for the Portland, i hadn't thought of going there, but we would travel if needed (we are six hours from London).

A TSH of 22 is horrendous. I'm not a doctor, but I work in a related profession, and regularly request thyroid bloods, and I have NEVER seen a TSH that high. I would think it almost certain that your itching was related to that.

My tsh was over 100 when I was diagnosed! Apparently, higher tsh doesn't always correlate to worse symptoms but I was very ill and it too me a long time, a great deal of hard work and eventually I got the meds I needed to come back to life ( levo and t3).

It's quite likely that I had sub clinical hypothyroidism during my first pregnancy but in my second pregnancy I was properly monitored by my endocrinologist and obstetrician who both kept my Midwife in the loop. My thyroxine increased in pregnancy - more than once - if I recall. Both my Children are well, although much younger than yours.

As far as I know thyroid disease runs in families ( my mother's side of the family - sisters/ aunts - all have thyroid issues) so it may be that as opposed to your pregnancy that has lead to her having thyroid issues.

You've had some good advice, at least get blood work done privately if you cannot see a paediatric endo. Health unlocked is quite a busy forum and you may find more help and recommendations.

Thyroid U.K. has a list of doctors - but I can't recall if any are paediatricians.

Also it is possible to lose weight when hypo - rare but it's to do with loss of muscle mass apparently.

I also wasn't treated in pregnancy despite 'borderline' tsh and detection of antibodies. Had a couple of biggish bleeds after 30 weeks and placental abduction in labour. All well in the end but god I'm still angry....

Cora, do you have anything I can read on the losing weight? I think this is how my body reacts and would like to know more.

Abruption. Bloody autocorrect.

Hi

I think I read it on the health unlocked forum or the thyroid uk group on facebook, as opposed to an article so I don't have a link to give. It is listed as a possible side effect by thyroid uk too. You could ask for some info on weightloss due to hashimoto's on health unlocked.

Placental abruption- how frightening that must have been for you hedgeh0g. for you.
Dd seems more tired now, I think maybe she feels she has "permission" now to be tired, and to say that she is feeling exhausted and overwhelmed. We had a chat with the deputy Head today, who was great, really understanding and supportive, so that was helpful to hear.

Sorry to hear this, but I'm so grateful for you to paying. We are currently going through this with ds. He's 15 and had been off school for a month, I really keep pushing him to try but 3 hours of school leads to him being so exhausted that he's crying and in pain for 3 days afterwards. I just really want a proper diagnosis so I know what to do and when to push him and when to support him.

baklava

From my experience it is really important that you do no push him. He needs to learn to listen to his body and not push past his limits at the moment. Is he on thyroxine? it can take time to heal and recover and if he keeps going to the point of exhaustion or even just to the point of tiredness he will suffer. I used to liken it to a full body hangover. I was only able to push myself harder or further 18 months after diagnosis when I added t3 to my t4 medication.

It's a truly awful condition.

Has he had his iron/ b12/vitamin d checked?

We are waiting for the results of those blood tests, I feel the gp is good, but there seems no sense of urgency. I'm worried about him missing too much school, although obviously his health must come first. I just feel so stressed not knowing what to do for the best.

Your post is helpful. I'll continue to support rather than push. Apologies for wibbling!

Hi! I am nursing dc in an awkward position so did not get the chance to read through all other comments so apologies for possible cross-posting. I wanted to write merely to reassure you. I was diagnosed with hashimoto when I was 11. You are right: how bad a high level feels depends from person to person, so although your daughter had very high levels she was probably not suffering in silence, if you know what I mean. I cannot remember a lot about the months leading up to my diagnosis because I was in a complete brain fog. Very tired, very slow, gained weight etc. Did not help that it coincided with getting my period. But once I got on the right level of thyroxin I felt completely fine. I am 32 now, thyroid needs to be checked regularly and I need to be strict about taking the needs but apart from that I have had very normal development (though of course I would say that ). Honestly, I am a normal height, weight and did very well at school and uni so there was no permanent damage in my case at all. This is what I would say though; it is important I think o me under the care of someone who specialises in thyroid issues. Living with hashis for 20 years has told me that many docs have no clue about the thyroid. and as you're own experience shows this is particularly true of pregnancy. During pregnancy the tsh range changes, iodine which usually has to be avoided becomes important for foetus, etc. However, I would not worry about your thyroid issues having caused your dd's directly. I don't think that's possible. Equally it is completely safe to breastfeed with hashi ( though a low milk supply might be an indication that mess need to be adjusted).There might be a genetic component but again once it is under control that's not a terrible thing. My endo as a child always said.Having hashi is like needing glasses, you need them but once they fit etc you can do whatever people with 2020 vision can do. That always helped me.

verybookish that is such a wonderful post to read. I feel really tearful now, such a relief to hear that you were fine at school, uni etc. DD has definitely been in a brain fog- if she is watching tv she just zones out completely, almost to the point of not hearing if you talk to her (this is not normal for her ). She finds it tricky to shift focus and harder to plough through her homework. She is chilly and just wants to snuggle on the sofa with me , under an eiderdown. She has no energy for school sports. I want my bouncy, zippy girl back.