Reading up about it, I see after the hypo period there is a hyper stage and then it resettles back to hypo. Is the hyper stage a long enough period to actually lose weight? How long did anyone find this part went on for? I have put on so much weight lately, it's making me feel low and sluggish even without hashis, so I'm wondering if everyone gets this hyper stage? Doc said today thyroiditis clears up in 18 months so am wondering too the time frame!!
Sorry, lots of questions in that!!
Oh, dear! Another idiot doctor. Hashi's does not 'clear up'. It's there forever - or at least until the thyroid is completely destroyed.
Yes, I lost tremendous amounts of weight when on a 'hyper' swing. And, sometimes it lasted for years. But, as soon as I went back down to hypo, all the weight piled back on, and then some. Sorry if that's not what you want to hear, but it was good while it lasted. 
Maybe I misquoted him sorry - it was his letter sent to my doctor and she read it out to me as I havent received mine yet. He may have said "settled down" actually, not cleared up. Will know when I get my copy, hopefully today. aah well maybe I will get some weightloss in this! Am certainly struggling with it atm. Thank you for replying
Well, even if that was what he said, it's rubbish. I'm pretty certain I had my first Hashi's 'hyper' swing in my teens. And, what I'm afraid will be my last, at the age of 50. So, that's a lot longer than 18 months!
I am not sure what your doctor meant by either "clear up" or "settle down"...in my own experience, it takes years for the thyroid to be destroyed when you have Hashimoto´s, and it does not go away. What happens (at least for me) is that the antibodies drop and end up in range or almost...that took about 20 years. I now consider myself to have "end stage" Hashimoto´s, meaning there is no hormone-producing tissue left to destroy. The only way of knowing for sure would be to have a thyroid ultrasound, but I really don´t care that much...my focus is on finding the optimal replacement dose for me. Ending up hypo for good, and not going from hyper to hypo as I did in the early stages of the disease, has actually made that easier for me.
But 18 months...?! Not sure what your doctor means by that. Hashimoto´s is a life-long condition and it doesn´t "settle". But once there is no hormone-producing tissue left to destroy, you would expect the autoimmune attacks to stop. I figured that happened to me when the antibodies normalised, but it does not change the fact that I have Hashimoto´s.
Even if you lose weight during a hyper period, as greygoose points out, you are likely to gain it back when you go from hyper to hypo. Weight loss with hypothyroidism can be very tricky (not many doctors understand this in my experience). If your T3 levels are low, weight loss is almost impossible. Since many doctors will only prescribe levo (T4), patients remain hypothyroid despite "normal" labs (because normal does not mean "optimal").
Some questions, in answer to your questions;
Is this 'thyroiditis that should clear up in18 mths ' comment the outcome of your recent FNA investigation? There are a few different types of 'thyroiditis' hopefully the letter when it comes will be more informative. pubmed.ncbi.nlm.nih.gov/196...
You have been Hypothyroid and on Levo for many yrs already........ is this Autoimmune in cause ?
As it happens when I went for the FNA the scanner didnt need to do one as there wasnt a lump. He showed me the thickening on the scan and reported that back to the Consultant. I suppose that with the raised antibodies just confirmed the thyroiditis to him.
Re the autoimmune sorry, am a little confused (doesnt take much..) what do you mean?
Autoimmune Hypothyroidism often called Hashimoto's on here, is the most common cause of hypothyroidism in this country. Usually confirmed by raised antibodies TPOab (Thyroid Peroxidase antibodies) or TGab (Thyroglobulin antibodies)
I was wondering if the original cause of your being put on Levo yrs ago was this ?
Given that you have been hypo for yrs , and they didn't find anything 'new' apart from a thickening (which i think is to be expected with hashimoto's ? ) it seems very odd that you are being told it will somehow 'settle'.
Ah I see what you mean. They found the raised Thyroglobulin antibodies in my blood results in July and I presume with one other ones in august. I didnt have them before in my last thyroid check last year. Although I have asked for both recent blood test results to be sent to me and I think I will ask for last year's too so I can compare and start trying to understand everything. I just feel Ive been dropped into a river from a great height and am struggling to understand how to get to land!! This forum and people's answers are so helpful in me getting my head around it all and the different terms
Just checking i'm not confused... have you been taking Levo for many yrs or recently started ?
p.s NHS don't usually check antibodies very often, usually done just to confirm diagnosis. They go up and down anyway, so don't really tell you much apart from that you already have Autoimmune thyroid disease , or if you are not already hypothyroid , you are more likely to end up hypothyroid in the future.
Taking it for many years, about 25yrs I think. I spoke to GP last week and have been put on to 125mcg now, up from 100 in the hope that this will help with the weight gain she said. Retest to be done early November to make sure am on the right dose
OK i see, so when you get sight of your actual blood test results people will be able to explain more whats going on. It's interesting to get hold of your historic ones too, i've been on levo 17 yrs and found it interesting to see what my levels of Ft4/Ft3/TSH had actually had when all id been told was 'OK, stay on same dose'
in the meantime keep reading old posts etc here, and it will (eventually) make sense, but it's very hard to get your head round for a while, and a lot to understand all at once. I started just trying to understand TSH/ FT4/FT3 and that took ages. But it makes a lot more sense when you have your own results history to look at.
Good point, will try and get a couple of years blood test results to see what has been going on! Thanks again for all your help
Sounds like he's confusing it with Graves disease where the NHS allow 18 months to see if you go into remission before recommending RAI or thyroidectomy. Hashis hyper swings last different amounts of time for each person, but Hashis itself (aka autoimmune thyroid disease) never goes away. Eventually, all the thyroid tissue will be destroyed so there are no more hyper swings, but that's all.
Just my luck to get a consultant who gets the two confused :-(!! Looking forward to getting his letter so I can actually see what he has said
Graves disease and Hashimotos thyroiditis
HYPERTHYROID
