Erratic test update

[Annoynomice]

One of my previous posts, enquired about how I could have a normal nhs test (and it was) and then a week later have a test that was abnormal. Helpfully, the guys here said it could be a flare up, so I was nhs retested and I'm even higher than the private test. Doctor has immediately put me on 25mg more Levo with a view to increase asap.

So for anyone on their first round of tests, really worthwhile not dropping back the frequency of tests until you have a couple of rounds of test in your records.

So thanks all and let's hope I stabilise soon.

[greygoose]

On your last post, you asked about Hashi's and how it works. This is an explanation:

Hashi's is an autoimmune disease, where the immune system attacks and slowly destroys the thyroid.

After every attack, the dying cells release their stock of thyroid hormone into the blood stream, causing the levels of the Frees to shoot up - FT4 around 30 something, FT3 around 11/12 - and the TSH therefore drops to suppressed.

There is no knowing how long these high levels will persist, but eventually, they will drop by themselves as the excess hormone is used up or excreted, and not only will you become hypo again, but slightly more hypo than before, because there is now less thyroid to make hormone.

Therefore, it's very important that your doctor does not reduce your prescription, because you’re going to need it again! If you start to feel over-medicated at that point - some do, some don't - the best thing is to stop levo for a few days, then, when you feel hypo again, start taking it again. It's very important to know one's body, and how it reacts.

There is no cure for Hashi's - which is probably one of the reasons that doctors ignore it - apart from the fact that they know nothing about it, of course! But, there are things the patient can do for him/herself.

a) adopt a 100% gluten-free diet. Hashi's people are often sensitive to gluten, even if they don't have Coeliac disease, so stopping it can make them feel much better, and can possibly reduce the antibodies. Worth a try. But, you should be aware that even if you get rid of the antibodies, you will still have Hashi's, because the antibodies are not the disease.

b) take selenium. This not only reputed to reduce antibodies, but can also help with conversion of T4 to T3 - something that Hashi's people often find difficult.

c) the best way to even out the swings from hypo to 'hyper' (often called Hashi's Flares, but that doesn't really sum up the way it works) is to keep the TSH suppressed. This is difficult because doctors are terrified by a suppressed TSH, for various false reasons, and because they don't understand the workings of Hashi's. But, TSH - Thyroid Stimulating Hormone (a pituitary hormone) - tries to stimulate the thyroid to make more hormone, but it also stimulates the immune system to attack. So, the less gland activity there is, the less immune system activity there will be, meaning less attacks, gland destruction slowed down and less swinging from hypo to hyper and back.

[Annoynomice in reply to greygoose]

Thank you very much for this. This is the most concise explanation I've read. I dont think I'm the only one who had never really heard of this disease before.

As soon as you realise you have it you start bumping into other people that also have it. It doesn't help that the symptoms come on so slowly, that even now I'm not sure whether some of them are part of my personality, just the way things are or part of the disease. I do know that I've stopped snoring, my eyebrows have grown back - and I do feel less anxious (But the last might be the change of job ;)) and that's just on a minimum dose.

What I'm unclear about is, is what do you do when the thyroid is completely gone. Do you take anything else, is this why some people are supplementing with T3?

I met some one who had been on Levo for 40 years yesterday, unfortunately diagnosed after the thyroid had completely gone, she wasn't on anything else. She was in her eighties and her treatment then (and possibly now) left alot to be desired.

Any way, thank you for the insight.

[greygoose in reply to Annoynomice]

You don't do anything - there's not much you can do that you aren't already doing. People usually take T3 when they don't convert very well, but you will only know how well you convert if you have your FT4 and FT3 tested at the same time.

Doctors don't understand much about thyroid or how to treat hypo - and know nothing at all about Hashi's! That is why we all have to learn for ourselves, and either self-treat or guide our doctors on how to treat us, if they're malliable enough. I gave up the doctor struggle long ago, and have been self-treating for nearly ten years.

[Annoynomice in reply to greygoose]

Hi grey goose

I will pay for another private test in a couple of months as it sounds like its worth it to get that extra insight. I'm gradually weaning myself off gluten so will step up the effortsvon that.

Thanks again.

[greygoose in reply to Annoynomice]

OK, but do be aware that even if you managed to completely get rid of your antibodies, you would still have Hashi's. The antibodies are not the disease. It's not even worth retesting them, really. But, gluten-free could help you feel better.