Hi! Need advice on side effects of taking 50micrograms of levothyroxine.

[Linseyd76]

Hi, my 13 year old son has recently started taking 25mircograms of levothyroxine from the 18th September but his specialist rang yesterday and told me to up his media to 50mircograms per day. He seems more tired than before he started taking the meds. His school has rang me today and said he is extremely tired! And looks like he could go to sleep! Any advice would be great! Thanks

[shaws Administrator]

Maybe your son needs a little time off school until the hormones kick in.

Fatigue is a clinical symptom of hypothyroidism and until his TSH is around 1 he might not feel very well indeed. There are around 300 clinical symptoms of hypothyroidism but most GPs/doctors are unaware of them.

It's not a case, unfortunately, of taking one pill a day and everything is back to normal (as most doctors imagine). Hypothyroidism lowers everything in our body, temperature, pulse etc.

His dose of levo should be increased until he feels much better. Levothyroxine also known as T4 has to convert to sufficient T3 (liothyronine) and T3 is the active hormone required in all of our receptor cells for us to function normally.

There will be other responses from members whose main symptom was/is fatigue.

It took me about 3 years to finally find something that made me feel healthy and it wasn't levothyroxine but many people do fine on it.

Best wishes to your son and you will be worried as well about him. Once on an adequate dose and/or hormones he should be well.

[Linseyd76 in reply to shaws]

Thanks for your reply! He started taking 25mg on the 18th September and has started taking 50mg today! The school keep ringing me to say he's nearly fallen asleep in class, I just don't know what to do! I don't think they will let me keep him off for a few days.

[shaws Administrator in reply to Linseyd76]

The school are obviously aware he's not himself and I think your doctor should give him a little time for levothyroxine to work properly. He will be unable to focus, I think, very much on schoolwork as sometimes our brain cannot take anything in. T3 is the active hormone and our brain contains the most receptor cells and our body has billions.

Your doctor can give him sick leave for a couple of weeks although I realise your son may be in an important part of his schooling.

[Linseyd76 in reply to shaws]

Thank you so much, I will ask his specialist if sick leave would help and if so to write a letter for the school. His specialist has also requested he have synacthen test. He's only 12 and I feel completely helpless if am honest. I know he needs rest but feel the school will think am taking advantage.

[shaws Administrator]

Also when your son's blood tests is due (it's usually about every 6 weeks with an increase until he feels better). Some doctors keep the TSH within the normal range and most of us feel better when it is around 1 or below. I assume it's the same for children.

It has been found if we get the earliest appointment and have last taken the dose of levothyroxine around 24 hours before, and fast (we can drink water) it helps to keep the TSH from lowering as most doctors adjust the medication according to the whereabouts of the TSH and it can make people unwell. He can take levo after his blood test.

Always get a copy of his blood test results with the ranges and post if you have a query. He should also have B12, Vit D, iron, ferritin and folate tested as we could be deficient too.

[Linseyd76 in reply to shaws]

Can you make any sense of these blood results?

Serum free T4 level 8pmo1/L. (10.0 -20.0)

Serum TSH level. >120miu/L. (0.20 - 6.00)

[shaws Administrator in reply to Linseyd76]

He is very unwell indeed with a TSH of 120. I know how I was with a TSH of 100 and I was bedridden. Considering we would be diagnosed if the TSH was around 10.

His FT4 is also extremely low not even in the 'range'.

[Linseyd76 in reply to shaws]

I think I need to speak to his specialist, and get more of an idea how it's effecting him. He was diagnosed in late May of this year but our G.P just referred him and didn't start him on any medication.

[shaws Administrator in reply to Linseyd76]

I really don't know what doctors are all about. Their training is abysmal in dysfunctions of the thyroid gland. Speak to his specialist as I think it's important your son has time to recover.

If you take his morning temperature before he gets out of bed and his pulse rate. You will be able to judge how he is getting along, temp should gradually return to normal but sometimes doesn't completely but you feel better and his pulse rate should also rise to normal.

[shaws Administrator in reply to Linseyd76]

Bearing in mind I'm not medically qualified but struggled to be diagnosed and then to recover my health thanks to Thyroiduk.org.uk.uk

[Linseyd76 in reply to shaws]

Yes he's Vit D and iron insufficient.

[foreversummer in reply to Linseyd76]

A lot of folk with hypothyroidism are. Is the GP/doctor treating him with Vit D and Iron?

I feel so sorry for you and your son. He must feel absolutely horrendous and I can imagine as a mum how helpless you must feel. Stick with the advice on this site and you will get him better but it will take time. I personally would take him out of school for a while and let him get some proper rest.

Appalled with your GP and the lack of proper advice you seem to have been given, but that's nothing new I'm afraid.

Foreversummer

[Treepie in reply to Linseyd76]

You need to get his B12 tested also,please also note that vitamins in range are thought to be OK by docs.,but being hypothyroid means your son needs to be near the top of the ranges.

I was diagnosed about 18 months ago and had been falling asleep in the afternoon ,I could not keep my eyes open .Even after being up only a couple of hours I had difficulty staying awake.

The school needs to understand the illness, have a look at the Thyroid Uk site and see if there is some information that you can give them.

Given how many people are hypo there might be a staff member who is hypo.

Some symptoms will go quickly once on treatment ,falling asleep went after about six weeks in my case but I still have other symptoms.

[Linseyd76 in reply to Treepie]

I have been told that it is more than likely his hormones or lack of them that are making him as exhausted as his is. They will be doing a synacthen test to check his hormone levels.

[Treepie in reply to Linseyd76]

It will be ,the pituitary gland senses that the thyroid is not producing sufficient hormones and goes into overdrive producing more TSH which instructs the thyroid to do its job,as the thyroid fails the TSH increases and in your sons case to a high level( mine was 102) and I was about to keel over. Levothyroxine will soon bring the TSH down but it can take longer to begin to feel well.

Even so , the hormones need help from adequate vitamins and minerals.And very sad for a young boy to be on a meds for a life time.

When you know more you may want to consider his diet and there are regular posts on this site about that.

[Clutter]

Linsey, You need to make it clear to the school that your son's fatigue and sleepiness is due to illness, not because he's up to late at night and it is going to take several months until he is optimally dosed and will start recovering.

Perhaps the school can allow your son a place in the sick room to have a nap at breaks and lunch time, or morning or afternoon attendance can be arranged until he feels stronger. Your GP should be able to give you a note/sick note to cover absences and might be able to advise a phased attendance care plan with the school.

[Linseyd76 in reply to Clutter]

I have been told that until the specialist completes the further tests (synacthen test) they will not be able to provide a letter to the school. Only then will the school make arrangements for him to not do games and p.e etc.

[greygoose in reply to Linseyd76]

I think it's time to start stamping your foot and throwing the plant pots around! Does your doctor know nothing? I fail to see what having a synacthen test has to do with writing a letter. His TSH is so high it is obvious that he is very ill to anyone (medical) with half a brain. There is nothing to stop your doctor writing a letter to the school explaining things if he wants to. He can always write another one after the synacthen if he wishes! The only explanation is his ignorance - he doesn't understand what thyroid is all about.

I'm afraid we hypos have to learn to stand up for ourselves. Otherwise, we just get fobbed off by ignorant doctors who Don't know how to treat us. Your son is too Young to do that, so I'm afraid you have to do it for him. Learn as much as you can so that they can't just fob you off. If you know what you're talking about, they're more inclined to listen. It's a terrible state of affairs, but that's the way things stand. So, do talk to your doctor, be polite but firm, your son cannot be expected to do anything useful at school, his brain just isn't functioning correctly due to lack of thyroid hormone, so he might just as well be at home, resting, so that he can recover his strength. It's cruel to insist he goes, poor little boy. And your doctor should know that!

But take heart, he's now taken the first step to recovery by starting the Levo, and he will get better when his treatment is at the right dose. Be kind to yourself, it's not your fault, and there's nothing much you can do apart from keeping his doctor on his toes.

Lots of love to you and your little one.

Take care. x

[Linseyd76]

I have all the blood test results now.

1st test 12/06/2015: Free T4 8pmo1/L. (10.0-20.0) TSH >120 miu/L (0.20-6.00)

2nd test 01/09/2015 Free T4 5.8 pmo1/L (11.0-22.0). TSH > 120.00 miu/L (0.20-6.00)

3rd test 18/09/2015. Free T4. 7.1pmo1/L. TSH > 151.32mu/L

These tests where all without being on thyroxine. He started taken thyroxine on the 19th September this year. And now they are talking about Autoimmune Polyglandular Syndrome!! What the hell is that???????