14 year old daughter with onh - anxiety, panic ... - Thyroid UK

Thyroid UK

137,152 members160,833 posts

14 year old daughter with onh - anxiety, panic attacks, nausea

sid3108 profile image
23 Replies

Hello,

Would it be possible for someone to take a look at my 14 year old daughter's blood results from last year. She is adopted and has Optic Nerve Hypoplasia; she is blind in one eye. She has many issues but recently has lots of anxiety and panic attacks. Her blood results are:

TSH - 1.73 Ref range: 0.51-4.30 mlU/L

Free Thyroxine (Free T4) - 13.3 Ref range: 12.0 - 22.0 pmol/L

Prolactin - 186 Ref range: 102-496 mU/L

Sodium - 141 Ref range: 133-146mmol/L

Potassium - 3.9 Ref range: 3.5-5.0 mmol/L

Creatinine - 62 Ref range: 40-68 umol/L

Written by
sid3108 profile image
sid3108
To view profiles and participate in discussions please or .
Read more about...
23 Replies
SlowDragon profile image
SlowDragonAdministrator

She needs referral to pediatric endocrinologist

Optic Nerve Hypoplasia is linked to central hypothyroidism

pubmed.ncbi.nlm.nih.gov/204...

Central hypothyroidism 

academic.oup.com/jcem/artic...

See central hypothyroidism in yellow box on flow chart here

Starting levothyroxine - flow chart 

gps.northcentrallondonccg.n...

Meanwhile get FULL thyroid and vitamin testing

Via GP ideally….or privately if not

For full Thyroid evaluation she needs TSH, FT4 and FT3 tested

plus both TPO and TG thyroid antibodies tested at least once

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies 

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis. 

Both are autoimmune and generally called Hashimoto’s.

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis 

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Recommended on here that all thyroid blood tests early morning, ideally just before 9am

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

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

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Blue Horizon will test children

List of private clinics for blood draw

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning. 

Watch out for postal strikes, probably want to pay for guaranteed 24 hours delivery 

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism 

thyroiduk.org/wp-content/up...

sid3108 profile image
sid3108 in reply to SlowDragon

Thank you for replying so quickly. We had an appointment a few months ago with a paediatrician - she had anger issues as well - it took me nearly two years to get an appointment. It was pretty much a waste of time as he looked at her and said, you look healthy, I'm an expert in ONH. We'll do blood tests. These are the ones I've already posted. He wrote to GP and said there are no problems.

I had asked for GP blood tests in 2021 - these are results:

Serum vitamin B12 level (XE2pf) 572 ng/L [> 179.0]

Serum folate level (42U5.) Below range 3.5 ug/L [3.9 - 20.0]

Below low reference limit Low Folate please treat with folic acid, consider alcohol intake, poor diet or malabsorption as cause

Serum ferritin level (XE24r) 16 ug/L [13.0 - 150.0]

The GP didn't contact me with these results - I had to phone; no-one said she had to take any supplements but I bought her Multi-vits and minerals plus Iron and Omega 3. These have helped her anger but anxiety/panic attacks seem to have got worse. She has a complex past from early trauma so it's like trying to complete a puzzle without all the pieces. She is in mainstream school, no learning disabilities - huge anger/anxiety/panic attacks.

Any thoughts would be much appreciated.

sid3108 profile image
sid3108 in reply to sid3108

She also complained of a 'gravelly' throat around Christmas - she said it felt like a lump in her throat. She also has hand tremors with her anxiety/panic attacks.

SlowDragon profile image
SlowDragonAdministrator in reply to sid3108

Below low reference limit

Low Folate please treat with folic acid, consider alcohol intake, poor diet or malabsorption as cause

Serum ferritin level (XE24r) 16 ug/L [13.0 - 150.0]

Ouch

Her ferritin was truly terrible

Both Folate and ferritin should have been treated by GP

Multivitamins never recommended on here

Most contain cheap poorly absorbed ingredients and for the worried well ….not someone with actual deficiencies

Come back with new post once you get results

Is she vegetarian or vegan?

Started periods?

Low vitamin levels tend to lower TSH result (because thyroid needs good vitamin levels to use/make thyroid hormones)

Optimal vitamin levels are

Vitamin D at least over 80nmol

Serum B12 at least over 500

Active B12 over 70

Folate and ferritin at least half way through range

Will pm you With Pituitary/adrenal/thyroid specialist

sid3108 profile image
sid3108 in reply to SlowDragon

Thank you so much. Not vegetarian/vegan. Started periods at 11. I asked for blood tests when she came to us at 3 as I'd read of problems with ONH. Her iron levels were very low then. Doctor didn't say to do anything. I added more iron containing foods to her diet. She has a healthy diet although in the past couple of years, she eats more sugar, like most teenagers.

Would you say individual vitamins/minerals are better than multi?

Thank you.

SlowDragon profile image
SlowDragonAdministrator in reply to sid3108

Yes …..but test first see where her levels are

Stop multivitamins or any supplements that contain biotin 5-7 days before any blood test as biotin can falsely affect test results. (Biotin used in many lab tests)

Sometimes wonder what GP is getting paid for if the ignore below range tests results

We see this repeatedly, day after day …..dire vitamin levels ignored and left untreated

Yet NHS is obligated to treat vitamin deficiencies

humanbean profile image
humanbean in reply to sid3108

I have found that being very low in iron / ferritin makes me crave sugar. I have also found that very low iron/ferritin makes me severely anxious, angry and depressed.

Doctors are really sadistic when it comes to treating women with enough iron - they just don't. Many of them really don't seem to think it matters and they leave many of us to suffer. When they do treat they only prescribe for 2 or 3 months at a time (in my experience).

When I finally found out that I could buy prescription-strength iron supplements without prescription, and could pay for tests privately, I tested and treated myself, and it has made an enormous difference to my quality of life.

That would be more difficult to do with a 14-year-old. The only testing company that I know of that will test people aged under 18 is Blue Horizon.

sid3108 profile image
sid3108 in reply to humanbean

Thank you, that's very helpful. I have recently changed her GP who, hopefully, will be a bit more supportive.

Jaydee1507 profile image
Jaydee1507Administrator

Other than what SlowDragon has recommended can I suggest she tries going gluten and dairy free? These can be intolerances that cause mood issues for sensitive people and may help.

sid3108 profile image
sid3108 in reply to Jaydee1507

Thank you. My husband is gluten-free as he has ME/CFS and I am dairy-free. I didn't think of gluten as she doesn't have stomach issues but her younger sister does and I had her tested, which came back negative. Latter has probable undiagnosed ADHD so could be a link there. Our 14 year old has possible ADHD. Thank you for your advice.

SlowDragon profile image
SlowDragonAdministrator in reply to sid3108

Have both sisters been tested for coeliac

nice.org.uk/guidance/ng20/c...

1.1 Recognition of coeliac disease 

1.1.1 Offer serological testing for coeliac disease to:

people with any of the following: 

persistent unexplained abdominal or gastrointestinal symptoms 

faltering growth

prolonged fatigue 

unexpected weight loss

severe or persistent mouth ulcers

unexplained iron, vitamin B12 or folate deficiency

type 1 diabetes, at diagnosis

autoimmune thyroid disease, at diagnosis

irritable bowel syndrome (in adults)

first‑degree relatives of people with coeliac disease.

sid3108 profile image
sid3108 in reply to SlowDragon

Youngest daughter, 12, has been tested - negative. Eldest daughter hasn't - I will ask about this. Thank you.

SlowDragon profile image
SlowDragonAdministrator in reply to sid3108

I sent you a private message

(See paper aeroplane marked chat - top left)

humanbean profile image
humanbean

I just came across this mention of benefits from Lactoferrin :

twitter.com/ElianaUku/statu...

Since buying Lactoferrin does not require a prescription - supplements are available on Amazon and other sites selling supplements - it would be legal to give them to a child.

I have never taken Lactoferrin, and have done almost no research on it, so I would suggest doing some research yourself.

Some links mentioning Lactoferrin on STTM - I'd suggest looking for more info than is supplied by STTM.

stopthethyroidmadness.com/2...

stopthethyroidmadness.com/i...

This would be worth reading on the subject of iron deficiency in chronic, complex disease and it mentions lactoferrin quite often :

twitter.com/exceedhergrasp1...

sid3108 profile image
sid3108 in reply to humanbean

Thank you, I will read more on this. I did take Colostrum years ago for my own lactose problems and it did help. Thank you.

arTistapple profile image
arTistapple

I find I am very shocked that even in this day and age and the awareness of mental health issues that this youngster should be treated this way by the medical profession. “You look healthy.” It’s shocking to the core. If this child (because she is still a child, approaching adulthood) has Central Hypothyroidism …….. Words fail me. You sound like a very level headed person with this child’s best interests at heart. She could not hope for better. SlowDragon is clearly very well informed, her posts are full of excellent advice. You are a wonderful advocate for your daughter. I am full of admiration for you.

sid3108 profile image
sid3108 in reply to arTistapple

Thank you so much, that's very kind. I'm afraid the world of adoption, especially for teenagers, is not easy for the whole family and professional/medical help is severely lacking. We are one of many families struggling every day. More shocking is that I also asked the Paediatrician about FASD - Foetal alcohol (I had told my daughter I would do this). He asked her to lower her face mask, said she had a beautiful face, then turned to me and said, no, she doesn't have FASD as she doesn't have facial features. I was stunned as I am no expert but have read that there are facial features in only 10% of cases. That was it, two year wait for an appointment. I didn't challenge him, I'm not a doctor. Adopted children today have so many challenging problems; mental health problems, that can be a result of their early trauma, genetic conditions or drug/alcohol related in pregnancy and after. There is very little helpful support. Thank you again, it means a great deal.

Brightness14 profile image
Brightness14

All I wanted to say was good for you in caring so much for your daughter. I was adopted at the same age I had been mistreated and because of it have only one working eye and one hearing ear.

I am 76 years old, so there is hope for your daughter but it's not always an easy ride, especially for you. I never meet my birth sisters until 1990's they were kept and mistreated too. Basically I was the lucky one. Good Luck

sid3108 profile image
sid3108 in reply to Brightness14

Thank you so much for sharing this. It is heartbreaking to hear of your early days and for your poor sisters. I am so glad that adoption helped you to have a brighter future. I have the same hope for my girls every day.

Brightness14 profile image
Brightness14 in reply to sid3108

Lots of patience and love that's it. Good Luck

arTistapple profile image
arTistapple

Things must change. If we can’t help people like yourself taking on everything you take on, there is something very wrong in our culture.

sid3108 profile image
sid3108 in reply to arTistapple

I think many people would be truly shocked if they knew the extent of the problems for adopted families. Unfortunately, adopters don't really have a voice as most children are removed rather than relinquished and families have to keep a low profile.

Ivanab profile image
Ivanab

Hi! just wanted to say I dont have any specific advice but am really sorry to hear of your daughter's suffering and am truly SCARED for my children's lives/mental health especially as they reach teenage years. I know there is obviously more background to her story than a 'regular' child but the lack of support is truly shocking

Just to back up that the NHS does not give a hoot about low ferritin- Mine was 6 post covid - no alarm bells for the GP at all. Have had low ferritin for years especially since thyroid issues. It went up to 12, GP said it's great! Said menstruating women come to the office regularly with even lower levels and it's totally fine. I have about 30% of my hair left, my ferritin is now 8. Did a private GI map and found H pylori! somehow the NHS stool test detected as well after i insisted on being tested as noone has ever explained the consistently low iron despite supplementing AND a good diet. I am now in early pregnancy and noone wants to treat it. I just dont know with these people anymore....they make you feel absolutely crazy and tell you not to google too much...funnily enough ....that same GP was googling right in front of me when i said thyroid levels absolutely must be controlled in pregnancy- he had 0 idea.

I hope you find some answers for your daughter- just keep pushing! You are bound to find someone enlightened

You may also like...

My 14 year old daughter was diagnosed with over active thyroid

She was diagnosed in April 2019 and is on block & replace treatment (Carbimazole & Levothryoxine.)...

Newbie - 11 year old daughter with hypothyroidism

TSH is only just over 10. She has thyroid antibodies of 805.4 IU/mL (<34) She has been feeling...

Concerns around 8 year old daughter

and I am concerned about my 8 year old daughter. She has cold hands and feet, gets cold easily, has...

Posting on behalf of 11 year old daughter

body, she can't sleep at night, she cannot focus or concentrate, she is tired most of the day, she...

Anxiety/panic attacks 75mcg Levothyroxine