Help needed daughter still unwell. Do not know where to turn

[janel]

Hi, I am looking for some help my daughter is 16 and got diagnosed with under active thyroid she takes t3 (40mg) and thyroxine (200mg). She gets a lot of stomach migraines. Her tests results are t3-14.58, free thyroxine 19 and tsh-0.10 this was 3 months ago, now they are t3-11, free thyroxine 26 and tsh-0.1. She is still very unwell and has collapsed 2 in the last 2 months. Any help would be great

[Jackie]

Hi It is not to clear what the results and ranges are, we need to be sure as all Labs differ. If you could put results and followed by ranges.However, she is on a huge amount of treatment, especially to start with. it often takes a year to get right with lots of retests and slowly increasing meds.Usually TSH needs to be low, T4 top third of range and Free T3 near the top of range, never over.

I would say that you need to urgently find a brilliant Endo, especially one who knows more about her age group. Then ask for a referral. I think this is serious and needs other action.If already seeing an Endo then if it was me, I would find a new one, different hospital and start again.

Migraine is also autoimmune, my gand daughter was put on Calcium Channel blockers for the Raynaulds, autoimmune, and drugs for the migraine,autoimmune by GOSH years ago. They help a little.I am not sure what age one can go there up to, but the best hospital in the world and they take referrals from any where.

Whatever you do, I would not go to a private doctor, it is important to get to the bottom of this. She needs other tests, Endo best placed to do these.

She must be in a terrible state.

Best wishes,

Jackie

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[janel in reply to Jackie]

thank you for that, where would i find an endo.

[Jackie]

Hi Louise has a list of NHS Endos recommended by TUK , [e-mail] you would need to phone their secs. NHS and ask about experience in 16 year olds It is different.If you wish to go privately, usually it is just paying for the consultation ,if you ask for the rest NHS, drugs are through the GP any way, on their advice, same as all tests can be. Then look up names from hospital sites, cross reference to private hospitals ,locally. usually more info there even if going NHS then also any well known Endo will have their CV on the WEB, put in their names etc. Then always phone the secs MHS or if going privately , private sec, and ask what you want to know. You can also get a feel for how they are. usually nice secs have nice consultants, but good and listen is more important.

Finally if you wish to see my private Endo, Saturdays. She is wonderful , sees teenagers, lovely caring doc and has a 17 year old daughter herself. If you want these details, Leamington Spa, get back to me and I will send you a PM. She would see you quickly, which I think is vital.Names of docs not allowed on open site.

Any Endo you needs a GP referral ( or tertiary) but find one first, not often good to leave it to GP.

Best wishes,

Jackie

[janel in reply to Jackie]

Thank you. I am based near Edinburgh or I would have taken you up on your kind offer. She was diagnosed over 18 months ago but still not settling. she started off on 50mg but now on the 200mg. x

[Jackie in reply to janel]

hi There are several in Edinburgh, who have a good reputation. I would look as I suggested. it is possible that ,you can find one. I find most of my really good consultants in that way. Having had bad ones recommended by docs,I am more careful now! Or Louise may have the name of one. Otherwise, you can also put a question on the Forum, asking if anyone knows a good suitable Endo there , but you must put answers by PM please. You have the top medical university in the country , so sure there is one .

I really think she needs to see someone a lot of GP`s are out of their depths.

Best wishes to you both,

Jackie

[Natalie_Edinburgh]

Any particular reason she is on such a high dose of T3? Given the doses she is on and how high her T4 and T3 levels are I would expect her TSH to be even lower than it is. Perhaps she is overmedicated. When I was 17 I was overmedicated and fainted regularly at the time.

[janel in reply to Natalie_Edinburgh]

it was gradually increased up to the 40mg, this is the level where she started to improve and not get as many of the issues x