#and my damn insomnia is back so I'm up not sleeping feeling worse both mentally and physically

[psi-psina]

Hi. :) You don't know be but I've been following you for a little while now and since I saw your posts talking about Graves Disease I wanted to ask you about it. I'm a 19 yr old girl, and I was diagnosed with it a few months ago and started on PTU. I wanted to ask, what was your experience with doctors and medication like? You had to have your thyroid removed? I feel worried about how this is supposed to be managed long-term because my doctors can be quite dismissive. If you don't mind. :)

OH MY GOD

DEAR ANON PLEASE HEED THE FOLLOWING LEARN FROM MY MISTAKES

So this is my experience and for the LOVE OF GOD don’t let this happen to you.

I was diagnosed with graves disease at the age of 14, showing symptoms of fatigue, tremors in my hands, exophthalmos and a slight goitre. I was tested for sleep apnea before i was diagnosed. Once diagnosed, my mother took me to a naturopath rather than an endocrinologist (i was a child, i had no control over the situation PLEASE DON’T DO ANYTHING THIS STUPID) 😩. It didn’t go well. I was given a tincture of iodine and various herbs (including licorice :/), which i had to take for about 3 months. it did nothing for me and my symptoms steadily got worse until my mother had to take me back to the doctor. My blood work showed a significant worsening of my condition; my T3 & T4 were both far higher than they had been before.

I was put on Neo-Mercazole which I remained on periodically over the next 9 years. You cannot remain on thyroid suppressants indefinitely due to their nature and bastard side effects (expelling giant blood clots through your nose? horrific), which got gradually worse the longer I had to take them. I don’t know how your doctors are managing your PTU but be vigilant. You NEED to aim at getting in remission. I was monitored closely while taking NM over that first course, and then as my hormone levels returned to normal I was weened off it. I was okay for 2 years, and then relapsed when I was 17. I was put back on NM and monitored until my levels returned to “normal”, then I relapsed again when I was 20.

after this I remained on NM pretty much for the following 3 years, but it’s effectiveness started to wane and many of the diffuse symptoms (especially anxiety, palpitations, insomnia, tremors, goitre, exophthalmos etc) simply weren’t going away even when my blood work showed I was within a supposedly normal hormonal range, and I just slowly went downhill over those 3 years.

this is huge problem with regulating thyroid disorders like this, your hormones are measured only in your blood work but T3 and T4 are heavily protein-bound hormones, meaning it’s presence in your blood IS NOT always consistent with it’s presence in your other tissues, where it is able to accumulate (not indefinitely without detection, but enough to give you symptoms). Suppressants just didn’t work for me long-term. They couldn’t help my thyroid regulate my metabolism over an extended period of time, the thyroxine in my body just kept accumulating. Basically, the moment I relapsed when I was 17, I was fucked. I was not aware of this at the time, obviously. At the time I had absolutely no idea what was going on.

the events at the end of my Final Relapse that led up to my surgery were serendipitous and bizarre. I was travelling to Japan in the October (2013) for a few weeks (which i flat out should not have been doing lmao) and got an appointment with my doc because i needed to fill another script for NM before I left, because i was about to run out. So i went and got the script and then when I went to fill it at the pharmacy, I couldn’t get the NM. There was an international shortage of Neo-Mercazole and I was flying out of the country the literal next day and I couldn’t get any ANYWHERE. PTU was still available but I couldn’t get that with a script for NM either. So I had no medication for most of those three weeks.

When I got home I booked another appointment as soon as I could get one and went back to work. Got another blood test to see what was going on and finally got some PTU. A couple of days later I came down with a cold. My immune system was shot and I was struggling to do things like get out of bed and walk up stairs at this point so I called in sick to work on the monday because felt so ill, and made another doc appt for that afternoon because i needed a medical certificate.

I went in to the doctor expecting to walk out with a med certificate, and asked her about my bloodwork. She opened the bloodwork and looked at it, looked at me, then took my temperature and pulse and immediately called my endocrinologist. My T3 and T4 levels were so high they were not measurable, i was feverish and hazy and my resting heart rate was 160-170 bpm. She told me I needed to go straight to emergency because I was at risk of thyroid storm (at which point I just burst into tears lol) and she called ahead to the hospital to have me admitted immediately, and that was that. I was taken to the hospital and was monitored there for 4 days and given several medications to try to flush some of the excess thyroxine from my body to make it safe enough for them to cut my thyroid out, which happened four weeks later.

So aside from the more diffuse symptoms of anxiety, depression, insomnia, full body tremors, exhaustion, goitre and exophthalmos, I was admitted in emergency with acute symptoms like fever, tachycardia, chest pain, hypertension, muscle weakness, bloody diarrhea, peripheral edema and fuck knows what else. :/ None of these things really abated over the weeks leading up to the surgery, and I honestly can’t describe what it was like to wake up from it almost asymptomatic after dealing with these things for months and years. It was like waking up in a completely different body.

If you’re wondering how I could have let things get that bad, how i didn’t realise just how serious it was, you need to understand. You need to understand how gradually all of this happens, it built up over a period of years, and when you live with a chronic illness for that long you literally just get used to feeling like shit, so if something else shitty starts happening you’re already so tired it hardly even registers. It doesn’t strike you as particularly abnormal because it all becomes normal. That’s the most dangerous thing about it. Not to mention, the sicker you get with Graves, the less capable you are of assessing your own situation; the anxiety and exhaustion and insomnia and horrible hazy brain fog you’re in every single day make it completely impossible to think clearly.

SO THE MORAL OF THIS IS, for the love of God, be careful, and take it seriously. It is extremely serious. I did not take it seriously enough for years because I was young, active and otherwise healthy which gave me a threshold for tolerating it that was far too high. Don’t dismiss your symptoms, don’t let your doctors dismiss your symptoms, ESPECIALLY the mental symptoms. Be aware of all possible and potential symptoms so you can actually recognise them for what they are, along with all the potential side effects of PTU. 

Get blood work done EVERY THREE MONTHS. THREE MONTHS, not six, not twelve, every three months. Other thyroid disorders, you might be able to be a bit more chill about, graves you fucking cannot. You cannot.

Read and get as much information about this as you can. Heed how your diet is going to effect this, because like any endocrine disorder, it will.

Elaine Moore is useful. (Read the forums) This is useful. Reading patient forums about people’s experience with it and how they manage it is invaluable, it’s far better than reading blogs that are usually dogmatic and trying to sell you stuff. patient.info is also a good resource for information.

Make sure you have a good GP and ESPECIALLY a good endocrinologist who works WITH you. Most endo’s DO NOT specialise in thyroid disorders, most of them specialise in diabetes and only have a middling knowledge of thyroid issues. It’s absolutely crucial to find an endo who specialises in thyroid disorders. Find one, if you can. Otherwise just crowd source the information yourself, print it and take it to your doctors yourself. Because honestly, the cost of not doing that is just....not worth it.

This isn’t supposed to scare you or anything, it’s a god damn burden but there are plenty of people with Graves who achieve remission or find ways to manage it over long periods of time, it’s a highly individual disease. So I really hope you are able to do that. :) TAKE CARE OF YOURSELF. 

#Anonymous