My daughter is newly diagnosed - could I have a little advice please?

[ChrizzaK]

Hi there,

my 14 year old daughter has recently been diagnosed with hypothyroidism.

Her blood test result in March was:

TSH 12.06 (0.35-5.5)

T4 9.73 (11.23)

She went onto 50 mg Levothyroxine and has improved, but is still definitely not herself. She also has a rash across her back and chest which flares up every now and then. The Drs think that this is related to her thyroid.

Her last blood test was taken this week and is:

TSH 3.13(0.35-5.5)

The Dr has said that this is 'normal' and is reluctant to increase he levothyroxine dose any further.

She is seeing an Endo in a couple of weeks, what should I be asking them?

And am I right in thinking that with a TSH of 3.13, that her hypothyroidism isn't fully under control yet?

Thanks very much for your help and advicex

[bluebug]

A 14 year old is considered a child and the endo needs to specialise in children.

This is is also why your GP is scared of increasing her dose as s/he will know little about the condition in adults let alone children.

[ChrizzaK in reply to bluebug]

Ah right, thank you :o) It is a paediatric endo that we are seeing, so hopefully she will be more accomodating.

[bluebug in reply to ChrizzaK]

Make a list of questions to ask the endo e.g. on her growth, on her fertility.

Mention when asking the questions for example on fertility you have researched that adults have lots of problems if are kept too high in the normal range e.g. over 2 so why should she be kept with such a high TSH.

[Michellemurray in reply to ChrizzaK]

It sounds like she might need T3 which is the active form of thyroxine. If she's not converting T4 to T3 she might not feel completely better. They should test her T3 at the hospital. I have to order mine from the states as its quite ecpensive and the drs wont give it to me. Hopefully your daughter will get what she needs.

It's always best to go off how you feel rather than the blood tests.

Barry Peatfeild has a great book about the thyroid might be worth a look.

Good luck hope it goes well.

[ChrizzaK in reply to Michellemurray]

Thanks for your reply - I'll have a look for that book and ask the hospital to test for T3 as well as T4 :o)

[ChrizzaK]

brilliant - I'll do that. Especially the bit regarding TSH :o)

Thank you x

[bluebug in reply to ChrizzaK]

In regards to growth if you think your daughter is smaller compared to you and her father's height, or very under weight then you should bring this up asap as being a teenager she needs any of these issues sorted out before she gets to 16.

[ChrizzaK in reply to bluebug]

She is quite a bit smaller than she was predicted to be in her Red Book given out by the Health visitor when she was a baby, and I'm fairly sure that she stopped growing around the same time that all her hypo symptoms became really noticable. I'll add it to my list of questions Thanks for all your answers today, it's been really helpful! Xx

[jimh111]

You should also advise her teachers as it will affect her schoolwork for a while and you want her to get support if needed and not be penalised if she is unable to give full attention etc.

[ChrizzaK in reply to jimh111]

Yes, we've done that and they were very sympathetic, especially once I'd sent them a link to the NHS website with a list of symptoms on.

Thank you x

[Saggyuk in reply to ChrizzaK]

Get all her vit levels checked - B12, folate, Vit D and iron as many of us are deficient. Also, does she have any stomach issues?

Yes, being hypo will restrict growth.

[ChrizzaK]

Thanks for that, I'll add it to the list of things to ask about :o)

She doesn't have stomach issues, but neither me nor my son can eat gluten- so I have suggested that she try going gluten free for a while to see if it makes her feel any better.

Thank you for your reply xx

[Saggyuk in reply to ChrizzaK]

Yes, that would be especially useful considering both you and son cannot eat and often genetic as this was determined to have been the cause of my thryoid and other autoimmune issues by the NHS even though I test negative for coeliacs and don't have the typical stomach damage. They have diagnosed me with NCGS as too much evidence and caused systemic inflammation and autoimmunity plus rashes everywhere in myself and daughter but is too late for my thyroid as already dead but all other issues reversed. Gluten ataxia also doesn't come with stomach issues in over 50% of cases and there's more research recently with evidence of issues with gluten being far more complicated and far reaching even in those without stomach problems.

definitely worth a try for three months to see if any improvements?

[Saggyuk in reply to ChrizzaK]

Oh and yes, people feel much better when tsh is 1 or under so she could do with an increase

[ChrizzaK in reply to Saggyuk]

I'm glad to hear you say that about the TSH, as I was worried we'd have to stick with everything as it is now - and she's still definitely not well yet. Fingers crossed the endo will agree when we see her in a couple of weeks!

I'll show my daughter what you have written about giving up gluten - she's doing her best to get her head round it, but the lure of bread is still strong LOL.

Thanks again xx

[Saggyuk in reply to ChrizzaK]

Hopefully, the endo will be better than GP but some aren't. GPs are generally really bad in helping anything especially chronic diseases. My thyroid went around the same time as your daughters but they refused to give me blood tests and kept saying I was just a depressed teenager and it wasn't until I was 21 when they finally did a blood test by which time I was in an awful state with ataxia and only awake two hours of the day. I also stopped growing early so a little on the short side lol!!!

My best advice to you is to ensure you read up everything yourself, get copies of all blood tests and understand them all yourself and never listen to much of what a GP has to say lol I'm sure there are some good ones but I've yet to come across one - the only one I like is the one I have now but only because he admits to not knowing things and just does the tests I request, no question asked lol

[Saggyuk]

It is worth a try - maybe just remind her that it only needs to be a few months to see if feels better - I would add that I had to drop my thyroid dose quite a lot a few months after going GF as went hyper so in case she is like me, keep an eye out for that if she does decide to give it a go.

Also, if she does have a similar problem to me, although my thyroid went first, it didn't end there and my problems got worse and worse until my early 30s until I finally figured it out including: an autoimmune sleep disorder, unstable sugar levels/diabetes, failing adrenals glands with suspected addisons, pompholyx and other blisters/rashes, low bone density and continued muscle/joint pain, back problems, continued deficiencies including iron anaeamia (on pills for 15 yrs- just come off), horrific periods, hair loss etc etc but worst of all, simply not being able to live life or function at all! This has all reversed but still left with a fewmore minor problems because of the long-term damage. Plus it may not actually be her problem, so either she feels better and prevents all the above or she can go back to eating it after lol