What are the next steps after thyroiditis diagnosis?

[CrazyTimes]

I have a CT scan this week to confirm, but the antibody levels which are "strongly positive" indicate thyroiditis according to the consultant. I am already on 100mcg a day so will it be increased? I have a very obvious (to me, as in I feel it inside my neck very clearly) lump, I get burnt mouth syndrome which I only realised was connected a few weeks ago, painful neck and shoulder, feel sick and generally feel ill and tired. Would really appreciate anyone's experience of what I should expect in the next few weeks/months. Both in terms of meds/possible surgery and when I may start to feel normal again! Thank you

[greygoose]

If your antibody levels are over-range, you have Autoimmune Thyroiditis. The CT scan will determine how much damage has been done to the thyroid.

An increase in dose would depend on your blood test results, not the CT scan. When did you last have a blood test? It does sound like you're under-medicated.

There's no reason why you should have surgery, unless the goitre (lump in your neck) is obstructing your oesophagus. It will eventually go as your thyroid continues to be destroyed.

What you can expect in the next few weeks depends on what has already happened. Blood tests should be done six to eight weeks after any change in dose, but in between, there's not much that can happen.

When you're likely to start to feel normal again depends on so many thing, it's impossible to say. The disease is not linear, there are too many variables. But, have you had your nutrients tested? Vit D, vit B12, folate, ferritin. These all need to be optimal for your body to use thyroid hormones efficiently.

[CrazyTimes in reply to greygoose]

Thank you, that is really helpful. Ive not have any nutrients tested. Is that done privately or will the consultant organise it? I had a blood test a couple of weeks ago, so I expect when the fine needle/ct scan is done this week I will be called in. I have felt so awful that on a couple of days recently I have doubled my levo dose - and felt so much better. I know I shouldnt but am running out of patience with it all. Been going on since Jan/Feb

[greygoose in reply to CrazyTimes]

Your consultant might test your nutrients if you asked him. But doubtful he would do it off his own bat. As a general rule, they don't understand the importance of nutrients.

Increasing on a couple of days is really not a good thing to do - for one thing, you will run out of tablets! But, the whole point of thyroid hormone therapy is to start low and increase slowly, to give your body time to adapt to the changes. Increasing too quickly will just set you right back to square one, and you'll have to start all over again.

What's more, I very much doubt it would make you feel better straight away, because it takes six weeks to feel the full effect of levo. It's a storage hormone, it doesn't give instant relief like aspirin.

You really do have to cultivate patience, because dealing with hormone is a long-term job. Everything takes time. And, if you do things like take more here and there, it will skew your blood test results, and that will delay your progress because your doctor won't understand what's going on. They are reluctant to increase doses at the best of times, and have little grasp of how all this functions. So, not something I would do again, if I were you.

[CrazyTimes in reply to greygoose]

Thank you, all your info is really helpful and I take it on board! I had a fine need aspiration about 15 years ago and was fine, drove home and carried on. The letter this week says i shouldnt drive. Any idea why? Are they just covering themselves in case anything happens, or can you really not drive after? Will have a snack/coffee before I leave hospital anyway

[greygoose in reply to CrazyTimes]

I've never heard that before. I've had all sorts of scans and never been told I couldn't drive after. If I were you, I'd start a new thread, just asking that to see if anyone else has any information on the subject.