A message from Rebecca to another Member about Graves/Hashi’s/Hashitoxicosis
Sorry it’s taken me ages to get back to you. I’ve read this through again and I think you have Graves, Hashi’s and Hashitoxicosis. Hashitoxicosis is when you have both Graves and Hashis which means you cycle through hyper, hypo, hyper, hypo. As has been explained to you Graves is clinched by the presence of TRAB / TSI – TSI are a bit complicated as you can have blocking and stimulating antibodies, which either block or stimulate your thyroid. Then you have Hashis – this is clinched by presence of elevated TPO (about 60% of straight Graves patients also have elevated TPO) and / or elevated TgAb. Another name for TPO is anti-microsomal antibodies. You also have nodules. So a bit of a nightmare. Here’s a link to an article about Hashitoxicosis: http://www.thyroidboards.com/hashitoxicosis/ In essence it’s like having a broken thermostat on your boiler. It’s a hot day but the thermostat is not picking up the ambient temperature so the boiler is pumping out more heat …. your thermostat on a frosty day will fail to pick up that it’s cold, and the boiler will stop producing heat, even though you need it. The feedback loop between the boiler and the thermostat is broken, and the boiler has a mind of it’s own.
The trouble with Hashitoxicosis, unlike straight hashis or straight graves is it cannot be controlled with medication as easily as you are up, then you are down, then you are up again. The article I’ve posted talks about surgery – a total thyroidectomy – as the ultimate solution. However it might not come to that. I’m with Christina, in that your life would have to be seriously in danger from spreading thyroid cancer to consider radioactive iodine, that would be the only scenario that I’d consider it. So the other ‘definitive’ solution would be surgery. In my view, as someone who has had surgery, it should be the last resort. For me, life will never be the same again but I was so poorly by the time I was properly diagnosed that there was no other choice.
I also agree that your current blood results suggest that you are HYPO not normal, your TSH is too high, and your T4 too low. It’s a shame we don’t have a FT3 result as you might be T3 toxic on and off which might explain some of the hyper symptoms you are getting despite your blood results – with late stage, uncontrolled Hashitoxicosis, you can be cycling through T3 spikes every four hours, which unless is it is caught on a blood test, will go right under the radar, with doctors offering you myriad (but usually psychological) explanations for your symptoms. The other complicating factor is that the INFLAMMATION in your thyroid (and yours will without doubt be very inflamed) can drive 70% of your symptoms regardless of your blood results.
The wild card in this situation is you’ve just had a baby so your hormones will have been all over the place, and things perhaps might settle down. So in your shoes I would not rush into anything drastic. However you do need a doctor who is willing to work with you and you most definitely need a referral to a good endocrinology team (my German endo has left the NHS but is still in London should you want a private second opinion). He was my third opinion and he saved my life, I’d been diagnosed with Graves, but I was very badly handled and I kept asking about antibodies but nobody listened until my German endo, who did all the tests and discovered I had Graves AND hashis, and hashitoxicosis, AND a 2cm nodule and a 2cm malignant tumour. I also had thyroid eye disease. I was SO unwell, it turns out that I could have died. So I am a bit of a thyroid warrior these days, and really try to encourage people, like you say, to take control of their own health, and keep pushing until they get the care they deserve.
For you right now, I think it would be worth pushing your doctor to test your levels of Vitamin D, calcium, test your parathyroid function, your sodium, potassium, a full iron panel (to inc ferritin, serum iron, transferrin, TIBC and saturation percentage), your vitamin B12 and folate levels, and ideally your magnesium, zinc and copper. Being hyperthyroid means you are using up nutrients too fast and as your gut is also going too fast then you don’t absorb enough nutrients either. Your calcium levels can go wonky with graves (my hands and feet went numb due to low B12 and low calcium as my body was pulling it out of my bones so fast) so that needs to be kept an eye on too.
Ideally, your supplement regime would look something like this:
Good B Complex
Vitamin B12 lozenges 1,000 – 5,000mcg a day
Extra Vitamin B5
Vitamin C to bowel tolerance, this will protect your adrenals
Magnesium – I like Alta brand, Mag Chloride
Multi mineral – to include zinc, copper, potassium, selenium
Fish oil – a posh brand like nordic naturals or green pasture
Co Enzyme Q10 – 200mg
Iron – you almost certainly will need this, I like Blue Bonnet Chelated Iron 27mg up to 8 caps a day,
Best diet is gluten free and I know you have two kids so it’d probably be a nightmare but the Paleo diet would be best for you, and if you could stick it, the Paleo Autoimmune Diet (sorry, very boring but good for you!) and like Trish says, anything you can do to calm the immune system. Accupuncture won’t cure you, but it will calm you, as will reflexology, yoga, meditation. Natural things to help hyper are lemon balm and L Carnitine. Elaine Moore’s website is very good, and she has info there about how some Graves patients are having success with Low Dose Naltrexone but I know nothing about that at all ….
Trish is right, electrolytes are vital. You could try quarter of a teaspoon of unprocessed (grey) sea salt in a big glass of water, and also sipping lemon juice in water to keep your electrolytes balanced. Wonky electrolytes, low B12, low iron, low Vit D can all cause all kinds of weird and wacky symptoms including getting super sweaty on little exertion, weird hard, ‘beaty’ heart, skipping beats etc. Low iron can make you feel very weird indeed. Generally doctors will prescribe a betablocker in Graves when the heart symptoms are bad but they further slow down thyroid conversion, and yours looks a little sluggish but it might be something to discuss with your endo if tackling vits and minerals, electrolytes doesn’t help.
I hope I haven’t overwhelmed you! By all means send me a PM and we can email, or even talk on the phone if that would help you. I think finding a doctor who knows their stuff is your first priority alongside getting those other blood tests. If your GP won’t help, there is a private blood test company (Blue Horzion Medical, where I’ve been today) that will do tests without you needing a doctor – you book, pay and then make an appointment at your local Spire or Nuffield hospital for the blood draw.
Another good website is Stop the Thyroid Madness – you’d learn loads there – or buy the book.
Please keep asking questions, it gets easier to get your head around it after a while.