How can I help my son?

[Alanna012]

Much to my dismay it seems my son has inherited autoimmune (no antibodies test done yet, but I think it is) hypothyroidism from me.

I had suspected he was expressing the symptoms for some time, (he was very slim, seemingly blessed with a fast metabolism and I was on the alert that it might really be hypothyroidism in disguise) but hoped it was just my anxiety making me imagine things, but unfortunately it was confirmed last year after he went to the GP due to excessive sweating. He has now predictably swung the other way and suddenly started piling on weight.

I can't find his results anymore but his T4 was above the range, and his TSH was around 8. GP asked him if he had a parent with a thyroid disorder, didn't explain why he asked the question or mention hypothyroidism and prescribed Folic Acid 5mg. This omission in explanation from a place of authority has made things difficult. The doctor didn't intend to, but my son misunderstood it as simply a mild vitamin deficiency issue and now dismisses my opinion.

The problem now is my son won't speak to me about it or accept any advice from me at all. I made the mistake of assuming the GP told him he was subclinical and got instant denial that he has any issue with his thyroid at all along with accusations that I am suffering with health anxiety so I dropped it.

He is frightened of course, he has seen me at the extreme end of hypothyroidism being as I was not treated for decades. I don't want to cause anxiety at all! At the same time it's hard to watch him doing all the classic things I used to at the same age when I was clueless and say nothing.

For e.g. he took the folic acid haphazardly, but it did eventually run out over time. But he refuses to take anymore now despite me saying I would buy some.

He won't take my suggestion of taking Vitamin D, C, Folate or anything else. It's hard to be taking these things for myself and not help my son.

He barely eats in the day. I remember going through this for years. The urge to eat lessens.

But he'll sometimes not eat a thing until 6pm or as late as 9 pm. He's thus getting little nutrients and leaving it until his digestion is winding down.

He doesn't sleep properly. He either stays up all night gaming or reading and sleeps in the morning until the afternoon. No sunlight (what little there has been this year) hardly unless he has to go out. Room is constantly in darkness, with curtains drawn so little natural Vitamin D either. He sometimes goes gym with friends in the evening to workout having eaten nothing beforehand. He often eats junk food.

My son has beautiful thick hair, but I had noticed lots of hair in the bathroom since last year. He came to me today looking upset saying his hair has thinned and I felt so sad as his hair really is gorgeous and the same thing happened to me when I was slightly younger and I remember it being very distressing. My hair has never grown back till this day. I don't fully understand how hair is affected by hypothyroidism so feel unable to help.

So far the illness is progressing exactly in the same way it did with me. At exactly the same age, it is uncanny. But how can I help? Today I suggested he get vitamins tested with an antibody profile and he baulked immediately at the antibody part.

As far as he's concerned he hasn't got a thyroid problem.

So what do I do just leave it? Any wisdom or advice appreciated greatly!

[FallingInReverse]

How old is he?

[Alanna012 in reply to FallingInReverse]

He's just turned 22 He's just finished University hence at home

[FallingInReverse in reply to Alanna012]

That is indeed tough. I am guessing you’re UK. I’m in the US, so not sure if things are different there.

This is a thyroid board. We can only share our experiences with our own thyroid treatment- which you already know. The right tests, hormone replacement and optimal vitamins and minerals, and lifestyle changes.

But that’s not the info you need.

He is over 21, if similar as in the US, there’s actually nothing you can do from a medical perspective. In the US, a parent has no right to see the healthcare info on an adult - whether it’s a child of yours or not doesn’t matter.

Is that the same in the UK?

And goodness knows there’s no way to “make” another adult make healthy life choices if they don’t want to.

[Sleepman in reply to Alanna012]

I remember that phase, already left home and coming back ... I could manage a couple of days at most and it was nothing to do with Mum really.

[FallingInReverse in reply to Sleepman]

Is there an expectation that kids move back home after college in the UK?

Reminds me of that very old joke, which my dad used to say with a big laugh which annoyed us to no end :

Kids! Tired of being harassed by your parents? Act Now! Quick! Get out, get a job, and pay your own way… while you still know everything!

I have said it to my teenager over the years with the same laugh that my dad did : )

[Rosebud1955 in reply to FallingInReverse]

ditto !!!!

[Sleepman]

All mixed up with young adulthood by the sounds of it. Is there someone else who can chat with him, he likely will have parent filter mode engaged. It os hard when you know what suffering and fatigue comes with uat.

I inheritted from my Mum. At a younger age I was a pain to her. You are programmed to challenge your parents so you try new things for the good of the species ...

Can you get blood tesults on nhs app or whatever your doctors use.

If it is autoimmune type it is pretty slow. He will swing around a bit on levels too. When he starts feeling cold he will be ready for some suoplementary hormone.

Best case is labs wrong and nothing happens

[Alanna012 in reply to Sleepman]

Thank you for responding. Yes I'm sure the resistance is mixed up with his emerging sense of individualism. You're 100% right. My son has always been a bit slower emotionally (so was I) so sometimes it feels like I'm getting Teen rebellion late! He also definitely wants to not be like me as much as possible right now. It's a good idea to get someone else to speak to him, but I honestly can't think whom. Perhaps his older brother but I think that could go wrong. My sister's a nurse maybe she can although she tends to follow the official NHS line and she's still Aunty. Not sure he won't dismiss her too. But I will float the idea to her x

[Dahliasanddaisies]

Gosh thar is so hard for you to watch. Sounds like he might also struggling with his mental health (staying up all night, not going out etc) which as you know is a classic hypothyroidism symptom. Given his age I think you probably need to play the long game, as hard as it is to watch, he needs to come to his own conclusions. You can lead a horse to water and all that.

Maybe buy him a book on the subject, leave it in his room and don't say anything. Sometimes you just can't hear things from your mum.

I'm dreading thus happening to my son (he's only 6) so I feel for you

[Alanna012 in reply to Dahliasanddaisies]

It's really horrible to watch. And you're right about the depression it's like the motivation to do things is weak and I worry about that getting worse. I keep thinking if he does the right things now he may be able to avoid the suffering I'm going through currently in the long run and stay healthier for longer, but then he doesn't want advice.

the worst bit is to be doing all these things for myself, sitting here with bottles of vitamins and minerals, cooking nutritionally balanced meals (when I can) and he doesn't want them. Only I am benefitting. I end up nagging about him getting sleep and I get frustrated watching him suffer symptoms but can't do anything.

The irony is had the doctor explicitly explained things better he would have accepted his advice. But now he won't go back to the doctor either because why? He's not sweating as much now and he took all the Folic Acid

🤦‍♀️

[Dahliasanddaisies in reply to Alanna012]

I totally understand your frustration and we all know GPs are generally not clued up. Could you afford to pay for him to see a private specialist? Someone who might actually take the time to explain it all to him. He is living under your roof and I assume not contributing right now, so he needs to tow the line somewhat.

[Alanna012 in reply to Dahliasanddaisies]

That's actually a good idea, I hadn't thought of actually. I think maybe if I say 'I've spent a lot of money on this appointment' he may feel guilty enough to go along. Thanks!

If you or anyone have any suggestions for a doctor that would be a better fit for a young person especially that would be good. I think he would be better with a Face 2 Face appointment. xx

[Dahliasanddaisies in reply to Alanna012]

That's difficult as we don't know where you live but if you have a search online or use the list provided by Thyroid UK, you may have some luck finding a local one. Doesn't need to be an endocrinologist, there are specialist GPs

thyroiduk.org/get-support/t...

[Rosebud1955]

Hi Alanna,

I don’t have much an advice to offer, but I can truly empathize. I really feel your pain. I have two sons in their 30’s who are both struggling with many symptoms. I’m unable to help them because they will not listen nor take any advice. They’re at the point where they now implying that I’m a hypochondriac. They have watched me suffer for years prior to my diagnosis. I suffered for years even though ultrasound showed several nodules. I had to take an early retirement from my job because of the debilitating fatigue and joint pains. I had hashimoto thyroiditis, no doctor bothered to even check for elevated antibodies. All they checked was the ‘mighty’ tsh which was always within range. I ended up undergoing a total thyroidectomy for papillary cancer. Although my sons are fully aware of my journey, they remain defiant and in denial. I’m now watching them suffer and I feel so helpless. The fatigue, weight gain and poor sleep are the dominant symptoms for them. Vitamin D levels are sweeping the floor, yet they won’t listen. I’m writing to tell you that you’re not alone. I hope they will eventually wake up and smell the roses before their health declines any further.

I wish you great success in convincing them to seek help. This can be a silent disease and can be very cruel.

Good luck!👍

[Alanna012 in reply to Rosebud1955]

Oh Rosebud thank you so much for sharing your experience. Of course we're in the same bucket together!

When you've suffered, you naturally want to help your child avoid what you've been (and are still) going through. You've done a lot of research and want to give them the benefit of it, but then they rebuff all your efforts! Yep and get called a hypochondriac/suffering from health anxiety just for suggesting basic things. But you still have to sit and watch the effects of the illness take hold on your kids that you sadly passed it onto. It's horrible!

I suffered in my twenties unable to put my finger on what was wrong. By the time I was treated I was very ill and never quite recovered. I want him to avoid that as far as possible.

I really hope your sons come round and start listening to you. Maybe as the PP said it's just a matter of time and leaving it. Give doctor details and let them decide.

Really feel your pain 💐

But I think ultimately the health service should be much better as if they won't hear it from us, they might have at least accepted it from them. But they get nothing.

xx

[tattybogle]

i would say that rather than pushing on the door marked "your thyroid is failing, i want you to go back to the doctor "

it's better to come at it from a point of "it's just a smart idea to collecting useful accurate data over your lifetime ie TSH/ fT4/ fT3 tests done under consistent conditions , we know this runs in families but most of us regret having no info on thyroid earlier in our life, so it's worth testing stuff occasionally so you know when anything changes , you might find it interesting , and if your thyroid does ever go wrong , it's potentially very useful "

try being more 'matter of fact'/ casual about it ..... no pressure . no concern....."i'm doing a routine TSH/ fT4/ fT3 test for myself in 3 months time , do you want to do yours as well just out of curiosity ?"

Turning out like their mum ~ especially if she struggles with health and energy ~ it's the biggest fear of many youngsters , so they will push back hard against any suggestion that they may be going the same way, and as for the antibody test .... i really would not have wanted to know at that age, it would have felt like the cloud of doom hanging over me .... and remember, going to the GP with something 'invisible' and being made to feel like it's in your head( or your mums head) is just as traumatic for youngsters as it is for the rest of us... so personally i'd try to keep them away from GP as far as possible and focus on getting them to start keeping their own records of thyroid activity over time.

if and when they want to persue it any further than an occasional private test to see what's happening , the desire to do so has to come from them ... the more you push it , the harder they are likely to resist, and for longer ... it's probably conterproductive.

[Alanna012 in reply to tattybogle]

Your post is wise and you're probably right. Particularly when you say being patronised by the GP is just as unpleasant an experience for a young person as it is being older especially when it's mum's assessment of your invisible symptoms...I am cringing to think what that might feel like!

It's tough. It's harder to turn things round when they get bad than to prevent them. But on the other hand the harder I push so as to prevent, the harder and longer he does push back..with the consequences.

See..I think I would have really wanted to know as a young person but maybe it would just have been a huge burden too.

I will (gently!) float the idea of the private doctor (or maybe not I need to think some more) and then if he refuses, I shall take up your advice, back off, coax gently, allow him to choose.

But his beautiful hair☹️

Thanks x

[SlowDragon Administrator]

low vitamin D and low thyroid levels can reduce testosterone

So that’s something he might have more interest in

See article here re low testosterone and thyroid

thyroidpharmacist.com/artic...

Low vitamin D and low testosterone

ncbi.nlm.nih.gov/pmc/articl...

[Alanna012 in reply to SlowDragon]

Thank you so much,. Yes he may well start taking an interest in that, as it's directly related to performance and he does like to keep up with his gym friends.

Thanks a lot x

[Jump1]

For me the hairloss has been the killer of this disease. Heart breaks for him and the pain he will face

[Alanna012 in reply to Jump1]

Thank you, I appreciate the understanding ♥️