Nocturnal panic attacks and hypothyroidism. - Thyroid UK

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Nocturnal panic attacks and hypothyroidism.

AmKH profile image
AmKH
16 Replies

Hi all.

Hope you are all well during these difficult times. If anyone could give me any advice, I would be very grateful.

My 10 year old daughter has had hypothyroidism for 1 year now. She's been taking 50mg of levothyroxine for majority of the year. About 6 months ago, she was advised to take her medication in the evening, rather than the morning. Due to a better intake. But since the change, she's been having nocturnal panic attacks, approximately 2 hours after her medication. Has anyone had this issue before? She would wake up in such a panic. (Very cold, clammy, shaky and sweaty) unaware of what's going on. It started from once in a while, to 4 times a week.

Since then, I've spoken to her consultant and agreed it might be better to take it in the morning.

Keep well and safe

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AmKH
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16 Replies
SlowDragon profile image
SlowDragonAdministrator

When were her levels last tested

Has she had vitamins tested recently?

Is she taking any vitamin supplements?

Does she always get same brand of levothyroxine?

Does she have autoimmune thyroid disease?

For full Thyroid evaluation she needs TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Ask GP to test vitamin levels

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and ideally before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

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

AmKH profile image
AmKH in reply to SlowDragon

Thank you for your speedy response SlowDragon. I hope you are well.

She's due to have her bloods done again next month. She taken vitamin D as hers is low. Her antibodies was still high last time, but very slowly coming down. Our pharmacy always give her the same brand (luckily).

As far as I'm aware, she has the full routine testing for hypothyroidism. I will ask again when she goes back for anymore further testing.

Her consultant has been in contact with us during the pandemic, to make sure she's ok.

As far as I'm aware she doesn't have any autoimmune thyroid diseases. I suppose it will take a while to get her balanced.

Once thing I have noticed again is her hair seems to be falling apart again. Something she is very conscious about.

Thank you again for your help and time.

SlowDragon profile image
SlowDragonAdministrator in reply to AmKH

You as her guardian are legally entitled to copies of her test results. Suggest you get copies of all previous test results and ranges. See EXACTLY What’s been tested

Come back with new post once you get results

High antibodies confirms autoimmune thyroid disease

Low vitamin levels extremely common with autoimmune thyroid disease

Low ferritin linked to hairloss

SlowDragon profile image
SlowDragonAdministrator

Has she had coeliac blood test?

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

healthcheckshop.co.uk/store...?

Assuming test is negative can immediately trial strictly gluten free diet

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

drknews.com/changing-your-d...

restartmed.com/hashimotos-g...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

ncbi.nlm.nih.gov/pubmed/296...

The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported

ncbi.nlm.nih.gov/pubmed/300...

The obtained results suggest that the gluten-free diet may bring clinical benefits to women with autoimmune thyroid disease

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

restartmed.com/hashimotos-g...

Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.

Foxtrot89 profile image
Foxtrot89

One thing that sprung to mind when you mentioned that was cortisol. You need adequate cortisol for thyroid to work efficiently as they work in tandem.

Cortisol is naturally higher in the morning when you wake up and gradually lowers over the course of the day, to a very low level to enable you to sleep at night.

When I originally started my thyroid replacement I would feel awful (on edge / restless / panicky) because I had a problem whereby my cortisol was low all day. Now that it’s improved to a normal level I can tolerate taking thyroid and feel better for it.

I’m not sure what the reason was for swapping to the evening but definitely switch back to the morning and it should be ok if it worked for her before.

Just my thoughts :)

AmKH profile image
AmKH in reply to Foxtrot89

Thank you Foxtrot89. It really helps x

Doggy1903 profile image
Doggy1903

So sorry to hear but yes, it may be raising her levels after she has gone to sleep and causing a disturbance. I have settled to morning meds in the hopes the levels will rise gently throught the daytime, This seems to work well.

Hope the very frightening symptoms ease away.

AmKH profile image
AmKH in reply to Doggy1903

Thank you Doggy 1903. It really helps x

nk655chii profile image
nk655chii

I advise you request your GP to change to a new brand of Levothyroxine. I have been on mercury Levo in the past 10 years, it was fair but could not give me optimal result due to undemedication. At any slight increase from 50mcg to 100mcg. i felt unwell. In the ladt one year i could not tolerate even 25mcg. My GP just realised that my absorption is negative regularly resulting in panicks, anxiety, high bp, irregular pulse rate. i have just been placed on 125mcg Teva Levothyroxine lactose free in the last 6weeks. i feel stable and better. i am hoping I will continue to feel the way I feel today now and in the future.

AmKH profile image
AmKH in reply to nk655chii

Thank you nk655chii for your post. It all a bit of a mind field isn't it. Glad to hear you're feeling better x

SlowDragon profile image
SlowDragonAdministrator

Malabsorption, gluten or lactose intolerance are all common problems

academic.oup.com/edrv/artic...

That’s why it’s so important to get FULL Thyroid and vitamin testing

Just testing TSH and Ft4 is completely inadequate

AmKH profile image
AmKH in reply to SlowDragon

Thank you for your help SlowDragon. I really appreciate it. The links what you've sent me have been really helpful. I know it's only been a year, but we're still quite new to it all. It's awkward as it's not me going through the symptoms. Children are very resilient when it come to their true feelings. Hope you are well x

hyllet profile image
hyllet

too avoid these nocturnal wakening. wake her upp before she gets them. u said they come about 2 h in slepp. wake her upp in 1,5 h, then they go away

AmKH profile image
AmKH in reply to hyllet

Thank you hyllet for you help. Hopefully, changing her medication routine will help her. I was wondering how common nocturnal panic attacks are, and if they are related to her hypothyroidism. She's quite a light sleeper most of the time x

hyllet profile image
hyllet

en del barn får nattliga attacker. om det inte går över så prova metoden att väcka henne på natten innan attackerna.

AmKH profile image
AmKH in reply to hyllet

Hi hyllet. Unfortunately I don't understand Swedish, but I presume it's the same as your previous message. Thank you again for your time to reply x

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