Depersonalization

[eve196]

Hi there. My son,14y.o. and hypo ,had an increase of 12,5 mcg in his levo dosage in February 1st (from 25mcg daily to 50mcg 5 days a week),two weeks later he started complaining that he feels as if he's in a dream,that situations & people around him are unreal.I guess he is talking of a feeling similar to depersonalization. Note that he has PDD-NOS and sometimes he is unclear in what he says. I am not sure if it's related to the medication or not but I thought I'd ask

[Claire2014]

Hi Eve, I’ll be honest I’ve lived with my head in the sand for a while and I’m only just looking into all of this so I don’t yet know what depersonalisation is but I thought you were describing brain fog which I’m lead to believe will settle a little when he gets used to it? Just a thought x

[eve196 in reply to Claire2014]

You're right,it didn't occur to me it could be brain fog,thanks Claire

[Claire2014 in reply to eve196]

Any time I hope he feels better soon x

[Tbender in reply to Claire2014]

Hello. My son is 15 and his tsh is 0.8 the doctors say it’s normal. And it’s was 2.4 and has gone down to that. He hasn’t been feeling well. Can you tell me how you found your son was suffering from thyroid. And what were his symptoms. Thank you so much.

[humanbean]

The brain is badly affected by having too little thyroid hormones. A common description for the problem is "brain fog". But other issues are also very common e.g. depression (which can be anything from mild to severe), anxiety, panic attacks, bipolar disorder, personality disorders. Schizophrenia gets mentioned too, but only rarely. The good news is that many people find these mental issues eventually disappear when they get their thyroid hormones optimised, optimise their nutrients, and work on keeping the body/gut as healthy as possible.

(I wonder how easy any 14-year-old will find it to deal with hypothyroidism in the "ideal" way. I wouldn't have taken too kindly to being told at 14 that I couldn't do this, or must take that, or mustn't eat something I wanted.)

Another part of the mental problems associated with hypo is being unable to engage with other people. Sufferers might lose their sense of humour, or be so exhausted that talking to other people is out of the question. Healthy people probably don't realise that having a conversation tires the brain out. It becomes normal for the sufferer to avoid talking to people (if at all possible) because they can barely string a coherent sentence together. And losing vocabulary, and struggling to find words is a practically universal symptom. We struggle to think!

[humanbean in reply to humanbean]

Oh, another issue - one that affected me - is that I developed non-coeliac gluten sensitivity. I only found out I had the problem by giving up gluten as an experiment. I'd already been told after thorough testing that I didn't have coeliac disease.

Lots of us find that our hypothyroidism is less disabling if we give up gluten.

One unexpected benefit I got from giving up gluten is that my bad temper disappeared, and my depression decreased.

[eve196 in reply to humanbean]

Thank you so much for the extended reply. My son was already a bit slow in his thinking when he was diagnosed,he is mildly autistic which,I was told that was a consequence of me being undiagnosed hypo during the pregnancy. He is trying so hard to deal with his condition but he is not willing to give up gluten and cocoa products .Since the increase he seems that his brain function has slowed down significantly and yes,he doesn't engage in social activities as he used to. I don't know if he should wait to adapt to the dosage increase or go back to taking 25mcg with a TSH of 4,05

[humanbean in reply to eve196]

25mcg is a miniscule dose. I think he should continue with his 50mcg dose, get tested after 6 weeks or so, then accept a raise if he needs one. 50mcg would not be enough for the vast majority of sufferers who come to this forum.

There are things you should try. Some people do badly on one brand of Levo, but do much better on another brand of Levo. There are currently four brands available in the UK. See the list here :

thyroiduk.org/tuk/treatment...

and look at "UK - Synthetic Levothyroxine T4 tablets"

Keep notes of what symptoms your son has on each brand of pills, then each time you pick up a prescription try a different kind until he has found one that works for him, or works best with the fewest side-effects. (Don't allow your pharmacist to mix brands.) You will have to phone up different pharmacies to see what they have in stock to fill the prescription. Most pharmacists will stock as few brands as they can get way with, I think.

Once your son has found the brand that works best for him, and he has found a pharmacy that stocks it, ask the pharmacy to put a note on his records that he must always be given that particular brand.

Optimising nutrients is another essential thing for hypothyroid patients. The body can't make best use of thyroid meds if nutrient levels are too low. There are loads of posts on the subject of vitamins and minerals to read.

[shaws Administrator]

I am sorry your child has hypothyroidism. It's bad enough when adult to cope with it and it takes time for levothyroxine to gradually get to an optimum dose. Levo is also called T4 the inactive hormone and it has to convert to T3 the Active thyroid hormone.

He should take levo with one full glass of water on an empty stomach when he gets up and wait an hour before eating. Food interferes with the uptake of the hormones.

Most take it when they get up but it can also be taken at bedtime - as long as stomach is empty and a gap of about 2.5 hours from the last meal and taking the night dose. You make a choice of either early a.m. or late p.m.

Always get a print-out from the surgery of the results with the ranges. Ranges are important for members to comment upon them.

Also GP has to test his B12, Vit D, iron, ferritin and folate. Deficiencies can also cause symptoms.

thyroiduk.org.uk/tuk/about_...

[eve196 in reply to shaws]

Thank you. He decided to take his medication at bedtime,we think he's absorbing better and is more convenient with the limited morning time before school.

His TSH is 4.05 (0.48-4.17) FT3 4.79(2-6) FT4 1.31(0.98-1.63) I think his frees are good. Ferritin 28.4(10-200), serum cortisol 8am 32.7(8-27) that's a bit high but it might be due to the blood draw ACTH 15.2( am 9-52,pm 9-30) ,Vit D3 21,4(11-47). B12 has not been tested but he is already supplementing with 1000mg/week sublingual. His blood work came back good and he suffered no side effects when he first started taking levo so I thought that he would be okay with the increase.

[humanbean in reply to eve196]

His low ferritin (iron stores) will make it harder for his body to absorb and use the thyroid hormones it has. Does he have low or high serum iron? And what about haemoglobin? Low or high or okay?

If high cortisol affects him the way it affected me and others with the same problem, it makes it hard to tolerate thyroid meds of any kind. The sufferer won't be able to cope with raises in dose because of unpleasant symptoms. They end up feeling hyper and hypo at the same time. They are likely to feel fatigued, brain fogged, breathless, and in pain as a result of hypo symptoms. And they are likely to have arrhythmia of the heart, a fast heart rate, anxiety, feeling jittery, due to excessive stress hormones.

Some people are lucky - their high cortisol decreases as their thyroid hormones increase. But others end up stuck, desperately needing more thyroid meds but unable to tolerate a raise in dose.

When I took supplements to help me lower my cortisol (it took a lot of trial and error to find what worked for me), I was able to double my thyroid meds. In the end I tolerated them so much better than before that I overshot and had to reduce my thyroid meds again.

[eve196 in reply to humanbean]

I went through his labs again,HGB is 14gr/dl (12-16) ,RBC 4.53(3.9-5.5) HCT 39.9 (36-47) MCV 88.1(79-96) MCH 30.9(27-34) MCHC 35.1 (30-35) The last one is above higher end. In previous lab tests,two of them, his am cortisol was very low 7.03 and 9.26 (8-27). As I am familiar with adrenal issues,I can tell he definitely has all the symptoms of low cortisol such as exhaustion,hypoglycemia,low blood pressure or waking up at 2-3am but he shows no signs of high cortisol or even swinging from low to high and vice versa,that I know well unfortunately,the contrary he is always close to apathy. Can low cortisol affect the way he absorbs and uses the medication?So far he hasn't had any hyper symptoms,he is always so tired,slow and unable to get started.Since last year he complains of breathlessness but only when he is running (he is a good runner) but the doctor had his heart checked which is okay and we were told that there's no problem and to let it go.I had asked for adrenal hormones to be checked but to no avail. Should I get a saliva test?