hashimotos disease. stopped taking thyroxin. am I mad

[ernesttheBavarian]

Anyone know anything about Hashimotos?

I was dx with it same time as coeliac disease. It wasn't explained to me in great detail (have since changed doctors)

I was taking Thyroxine 100.

Stopped taking. can't explain why. Just got out of routine over summer, being away. Somehow resisting starting again. Also don't know why.

Am I being stupid? Harming myself?

I feel pretty fed up with all the changes my dx have brought so I guess I'm mentally rebelling/sticking my head in the sand. Someone explain it's ok or give me a kick up the arse if that's what I need.

why not get a few blood tests and see? possibly by going gluten free your body will no longer be attacking itself?
personally, yep, i call it madness but i was v seriously ill with it so i would never ever want to feel that crap again. maybe you didnt feel so rough?
anyway, blood tests . . .

do you know much about it? Is it dangerous? Maybe I should just stop being weird about it and start taking my med. I dunno why I've developed this block?

Ultimately if left untreated, it can be dangerous. Look up myxoedema madness and find out about what happens to the body if thyroid disease is left untreated.

Sorting out your gluten free diet will help with symptoms, but yes, you do need to get back on your meds and get on the right meds.

Remember that the antibodies will fluctuate and so will symptoms, but they will not go away altogether.

I have hashimotos too. I have had phases of resisting taking medicine. I'm realising now that this is a symptom of the hashimotos, because it normally happens when my TSH levels are high. I'm thinking it's possibility due to mild depression or because of the brain fog. It's a total bastard cycle, so when I am most ill I am least able to make sensible decisions about meds. Obviously I can't say if it is the same for you, but I would definitely agree with the other posters suggesting you get a blood test to judge whether not taking meds is genuinely the best thing for you.

It is definitely one of the symptoms to resist the medication. My stepmother was terrible for it and everyone suffered when she was in a phase. Please get some proper advice and guidance. I think you need to get your medication sorted out then get yourself properly informed. It's shocking that you've been left to get on with things without proper information!

how often do you get your blood levels checked?
Should I go 'au natural' or start taking a few days and then go?
When you have your levels checked, do you take your thyroid med before the test (I think I'm supposed to be fasting but having taken tablet) I can't remember.
therein, that makes sense. I can't explain why I'm resisting. It's not a new dx but I can't quite believe or face the fact I have to take med for life

I totally get how you feel. I hate it that I have this condition for life. I hate the amount of time I spend collecting prescriptions and being at the drs. But I do feel better for getting in a stable pattern with my meds.

Could you bear to visit the GP, explain that you've never had hashimotos explained properly and ask for support in finding the right level of meds now you are gluten free.

My GP surgery requires me to have a blood test every six months, but I only need to see the GP if the results are outside the expected range. I don't love doing it but I can see the benefits.

Btw have you got your prescription exemption card? The only thing about this bastard illness is not paying for prescriptions

How often have you had your levels checked up to now?

Mine have been up to now been checked every 3 months, we seem to have the right dose so I have gone to 6 months. I will probably go to every year after the next one or so if it seems to be stable.

I think you should book an appointment asap to have your levels checked and to get proper advice.

I don't live in the UK so don't have prescription exemption cards or GF prescriptions which I heard you get in UK.

Maybe I'll wander down tomorrow and get tested.

Should I take med before i go?

Does hashimotos affect your eyes. I know I'm getting on a bit but feel my eyes have deteriorated recently. (Have been to optician, do need new, stronger prescription. Not done that yet either. )

Don't take your meds before the test - take 'em afterwards.

Yes, it can affect your eyes and your vision.

One of the side effects I noticed on taking my meds was that my night vision improved.

Your Thyroid controls a lot of your body's function, so if your levels drop then your body begins to shut down.

However if you are not in the UK, that could explain why you've been told its Hashimotos so quickly. Were you seen by a specialist? An endocrinologist? I would be pushing for that and a specialist for your coeliacs.

it was a GP but specialist 'internist' dunno how that is in English. Not a full on endocrinologist but not an average bog standard GP either.

I hadn't thought of that but I'll see if I can get my neighbour to recommend me a specialist. (She knows everyone). That's the great thing about the German system, I can just look up a specialist and make an appointment. And hopeful not wait too long. Thanks everyone.

I feel much better and clearer now :)

Hi ernesttheBavarian, this is woolshortagethebavarian.
I have hashimotos too, in fact I have had most of my thyroid removed as it was so huge pre-diagnosis and grew in pregnancy.

I really recommend getting back on your meds and sticking to them. I am at a very stable level now (have been for years) but pre-diagnosis I could feel myself aging by the day (I had this for ages before I was diagnosed.) I also had lots of random symptoms that I would never have put down to it e.g fear of heights which I never had before, extremities going numb while I was sleeping, weight gain etc etc.

Now I pop a tiny tablet every morning before breakfast and I feel completely normal. I don't even think oh I hate this illness and being dependent on the medicine, because I am so relieved that I found out what was causing my feeling of crapness. So I suppose I recommend you taking the meds so you don't spiral into a feeling of crapness.

When I have bloods done, I take my medicine after the test that day. If you want yours tested, I would do it before you start back on the drugs because it takes a few weeks for your blood results to accurately reflect what is going on in your thyroid. That's also why they say to wait about two months after changing your dose before you have another blood test.

I was diagnosed in Germany and was referred to an endocrinologist who did an ultrasound and szintigram. Now I am supposed to go for an ultrasound every few years and have my bloods checked with my Hausarzt once or twice a year.

Are you taking thyroxin with Jod in it? You know how they are jod-obsessed here with all their jodsalz etc and are always yapping on about Kropf (goitre)? Well Jod is thought to make the autoimmune system go into overdrive so a 'good' doc will ensure you are NOT taking thyroxine with jod added. I was lucky that my Hausarzt und Gynae were very adamant that I should not be taking any Jod whatsoever (but I had a fight persuading the maternity unit that when they wanted me to take Jod supplements post birth). In my case my thyroid was really big when diagnosed, so some GPs might have thought it was a Kropf caused by Jod deficiency and treated me wrongly.

Here is a website in German
ht-mb.de/
which has lots of info about autoimmune underactive thryoid (Hashimoto) and autoimmune overactive (Morbus basedow or Graves Disease). I think the eye problems are more associated with the overactive version. Having said that I do think my eyesight is poorer these days and I am not a happy night driver, but who knows if that is to do with Hashimotos or just getting older!

Hope this helps.

Thank you very much for that useful post. Are you currently in Bavaria? Or UK? My 1st tablets did have Jod, but my latest ones not. I didn't realize I should avoid it. I think my Hausarzt is good and very thorough but not a specialist. I'm trying to find a good Internist/Endokrinolog in München. I also need my Coeliac disease checked up, but my Internist for the Coeliac was rubbish, so trying to find a specialist through recommendations. My neighbor knows apparently THE best, but I think he only has private patients.

I guess mx dx was so fuddled I've never really accepted i or understood it. I can't really explain it. I guess I just need a good doctor to get me back on track.

Thanks.

Yep still in Bavaria but close to the Austrian border. Just remembered it wasn't an endocrinologist I saw but a Nuklearmedizinerin (don't be put of by that name!). Might be worth look for a Nuklearmediziner. I once saw a list of thyroid doctors recommended by other thyroid patients but I cannot for the life of me find it now. However this website has an Arztfinder function by location:www.forum-schilddruese.de/Arztfinder.htm?ID=174

I think to go back on your meds, you should build up to your old dose gradually as it might be a shock to the system to go straight back to that.

I'll have a look thanks. The one my friend recommended was not only private but also only endocrinology. I need internist. so back to looking for recommendation.