How can I help my 49-yr old daughter?

[AtoZ24]

My daughter, a brilliant veterinary surgeon is 49 and 20 yrs ago was diagnosed with PCOS, told she would probably 'develop heart disease and diabetes and she would never have children'.

Four years ago, she was diagnosed as being level 1 on the Autistic Spectrum-what used to be called Asperger's, but she had managed to mask and hide it so well we, schools and university had no idea! This revelation meant that what she had been told before about the PCOS she believed to be true-she has never had a boyfriend, and believed herself 'useless'.

My two sisters and I have all developed hypothyroidism, after being hyper, and my daughter is very overweight, has thinning hair, is on a gluten free diet because of a leaky gut, just started to be dairy-free, and I am at a loss as to help her because she says her thyroid levels are 'normal'. To add to the issue, she is needle phobic, has suffered debilitating migraines, and was prescribed Rimegepant a year ago, but still suffers now and again. She has been prescribed Citalapram for depression (who wouldn't be depressed with that background?) which floored her and made her feel drugged and unable to function, so has stopped it-she was on a 2.5mg dose and has an appointment on 28th October.

She is out of work at the moment, having left claiming constructive dismissal, because the adjustments she requested to be made to accommodate her Autism were basically refused by the practice-she joined them in 2020 during Covid and the original Practice manager did her best to accommodate stability in the rotas. A new one started in 2022 and everything changed for the worse, and this resulted in the depression, migraines, and eventually the departure.

I believe she is subclinical hypo but she says the results say not. Any advice would be helpful! Thank you.

[Regenallotment Ambassador]

It’s really lovely that you are advocating for your daughter. Thanks for posting. It sounds like she’s having a really hard time.

Ideally you should post her thyroid results here for people to help. If it’s from the GP then likely a single TSH result which doesn’t tell an awful lot. But it’s a start.

Could you find out what the result was? and what range? it will look like this. She may have it in an NHS app and e.g. 4.5 (0.2-4.8)

Normal euthyroid people actually tend to have a TSH closer to 1.0. So normal on my range above could be 4.7 and actually it’s far from normal. 3.5 in the US would get you a diagnosis.

She is entitled to a copy of her results from the GP practice and it’s perfectly normal to ask for a print out.

She really needs to know her FT4 and FT3 results and if she is a vet she’s probably got more knowledge on this than her GP. Vets seem to know more!

Full thyroid testing privately can be done by finger prick test via Medichecks, Monitor my Health, best to test first thing in the morning when TSH is highest.

Hypothyroidism does run in families, if you were hyper first and then hypo later, like many of us here, you likely have Hashimoto’s (autoimmune thyroid disease). You and your daughter can test for TPO and or TgAb antibodies to prove this. GP can test but likely GP will only test TPO.

This is the link to hypothyroidism symptoms from Thyroid UK.

thyroiduk.org/signs-and-sym...

You are all likely low in vitamins B12,D, folate and ferritin too. Best to get these tested and post results.

Loads of PCOS and ASD members here who can advocate too. 🌱

[AtoZ24 in reply to Regenallotment]

Thank you, yes, I have regular tests, take thyroxine and T3 and latest came back good, and I hae B12 shots and have folate and D3 etc, but my daughter's problem is Autistic people on the Asperger's scale are hypersensitive to sound, touch, etc, so getting blood tests have to planned and rely on the surgery to help in timing, etc, and I'm not sure what was last tested, but to want her to have regular tests is not an easy task as it causes anxiety and panic! I will check though and report back. As you say, being a vet she knows how things are done for thyroid disease in cats etc and it is far more thorough!

[Buddy195 Administrator in reply to AtoZ24]

With an ASD, your daughter may find it easier to complete a home test for thyroid and key vitamins, using a lancet to take blood from her finger. Many forum members, myself included, do this.

[AtoZ24 in reply to Buddy195]

Of course, I'll suggest it, but encouraging someone with hypersensitivity to stick a lancet into herself is not going to be easy!! Maybe I'll buy the test first and start sowing the seeds!! Thanks!!

[Janine159 in reply to AtoZ24]

My granddaughter has autism too she's 12 now but undiagnosed at school they used to put her in a separate room with a teaching assistant as she disrupted classes and lunch times she was petrified to go outside with noise and kids running around .sat crying on a bench no friends .she's now lucky enough to be in a special school but she's the same they can't take blood from her screams the place down. She's on gf diet has medication to help sleep .has raynauds disease .very talented on piano and artwork crafts she excels on so much as your daughter obviously has such a shame she's struggled all these years prob didn't show . Hope she gets sone help my daughters fought long and hard to get her daughter a chance of getting on T school she's doing well but has problems . Heart breaking but outwardly she's not noticeably different just doesn't like criwds and noise as you say not Easy x

[SlowDragon Administrator]

You can also buy a home kit and have a nurse visit to do blood draw ……might be easier

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test

(and if/wen on levothyroxine….last dose levothyroxine 24 hours before test )

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

For yourself……..T3 ….day before test split T3 as 2 or 3 smaller doses spread through the day, with last dose approximately 8-12 hours before test

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

Post all about what time of day to test

healthunlocked.com/thyroidu...

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

Only do private testing early Monday or Tuesday morning.

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

PCOS and autoimmune thyroid disease are strongly linked

Hair loss suggests low iron /ferritin

[TiggerMe Ambassador]

If aiming to home test then perhaps one of these gizmos would be easier than the lancet...

everytest.co.uk/product/tas...

[humanbean in reply to TiggerMe]

Are those gadgets one use only? Or can they be re-used?

[TiggerMe Ambassador in reply to humanbean]

Single use I'm afraid, hopefully they'll get cheaper

[AKatieD]

NHS app may have some old results?

At least as a vet she will be familiar with blood tests, hopefully she will be able to tell you what will make her most comfortable to have one, some good suggestions above.

[AtoZ24 in reply to AKatieD]

thank you-I had no idea tother things were available! No excuses now!! Thanks to everyone for suggestions, onwards and upwards!