Hashimoto’s

Thanks for all the responses everyone, it has definitely helped me understand my diagnosis more and make me feel less alone in it, the internet is filled with a lot of confusing and contradicting information.

I got diagnosed wit Hashimoto’s because hubby and I were trying to get pregnant with baby#2 and I’d always get a positive pregnancy test, but get my period a few days after. We went to a fertility specialist and did all sorts of tests and the only abnormal thing that came out were positive autoantibodies to my thyroid. The doctor started me on thyroxine and soon after I got pregnant and stayed pregnant 😀

I have been told by a specialist I’ve seen for auto-immune issues that eventually the thyroid is so damaged by the disease that it no longer can function by itself and the 200mg a day dose will replace, entirely, what the thyroid can no longer successfully produce. It does take many years, I’ve been diagnosed almost 30 years ago now, and still are not on the maximum dose.

Does the thyroid completely destroy itself? I thought it just led to possible thyroid failure?

I was diagnosed in my 20s & I took 200μg of thyroxine for many years. I’ve recently come down a little. My nan was only on 50μg!

Very well explained M8. The tip about putting the medication in the fridge ASAP from the chemist store is really worth sharing – when I first had Hashimoto’s it wasn’t necessary to refrigerate the medication, but that changed maybe 15 years ago.

I too have Hashimoto’s and one thing that’s very true is that it does make you more likely than average to develop more auto-immune conditions. In my case, I developed primary Sjorgen’s Syndrome a few years after my Hashimoto’s diagnosis

I was diagnosed in my mid 20’s, I was told then I was quite young to have the disease – that it mainly appeared in middle aged women. So when I was pregnant, it was a bit of a rarity for the doctors managing my pregnancy, across all 3 children I had. I know I had to have a higher dose of Thyroxine whilst pregnant.

Eventually with Hashimoto’s, the thyroid completely destroys itself and you’ll end up on the maximum replacement dose of the hormone, 200 mg a day. I’m on 175 mg a day now, I know in the next year or 3 I’ll be put on the maximum dose.

Just make sure you ask lots of questions with your doctor, and also if necessary, you may need to go to a specialist in the future

Hi Nicoler: There are a few forumites with thyroid disease, & I think there are a couple with Hashimoto’s specifically, myself included. I disagree with coodopa’s comment that you don’t get symptoms when your thyroxine dose is correct. I get regular blood tests to monitor my thyroxine dose, yet fatigue is still the norm for me. What the doctor’s say & the reality of living with a condition often vary a LOT.

I was initially diagnosed by an elderly doctor who has now retired. She knew a lot of stuff. My skin is uncommonly tough – that’s a symptom which my new, younger doctor hadn’t heard of but the elderly doctor did. Body temperature regulation is difficult. Most Hashimoto’s sufferers are always cold, but for some reason I’m super sensitive to the heat instead. My new doctor explained that not everybody obeys what the textbooks predict. We’re all still individuals & prone to variance. Hashimoto’s can be hereditary. My mother & sister also have it. We’re all sensitive to the heat instead of the cold.

Depression is another symptom. This is the one that sucks your soul out. Depression is to be feared, it kills people every day. You’ve got to fight depression actively. I’m cheery, aren’t I? Forewarned is forearmed.

We’ll both be on medication for life, but it’s just one or two tablets a day. I always pick up my script when I’m on my way home because the thyroxine needs to be kept in the fridge. The chemist should put it in a foil bag for you. Take your dose on an empty stomach. I mark the dates on the blister pack with marking pen, so I know if I’ve accidentally missed a dose. (I don’t like using the bottom row, so the numbers are upside-down on the bottom. When I finish the second row, I turn it upside down so that the bottom row becomes the top row. I might be slightly neurotic!)

I don’t suffer with it, but am studying medicine and have seen a few people who do. It is actually reasonably common in young – middle aged women. While you are working out the right thyroxine dose, you may get symptoms if the dose is too high (anxiety, restlessness), or too low (sluggishness, fatigue). But once it is stabilised, apart from taking the tablet, you shouldn’t have any symptoms. Pregnancy or big weight changes may alter it – but then it is just a matter of adjusting the dose with a doc. Taking the tablet is not like taking the pill either – where it doesn’t work if you miss a dose – you can just catch up. However, because it is an autoimmune disease, it might be that you are slightly more susceptible to autoimmune diseases than the average person – but that is still pretty uncommon – it just means that it is something you should tell doctors if they ask about your past medical history.