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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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)
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.
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
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
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
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
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.
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.
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.
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.
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
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
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