I’ve posted recently re issues with moving from hypo to hyper. I have just had a thyroid ultrasound and it was described as ‘abnormal’ and a ‘very poorly thyroid’ and as I suspected is Hashimoto’s Thyroiditis.
The entire surface was marked not smooth and too much blood flow.
My recent bloods are showing T4 over range, suppressed TSH and T3 somewhere near bottom of range.
I’ve had many hypo symptoms but largely feel underactive, cold, ill etc god only knows what’s going on.
I’ve not had any treatment as yet, just a reduction in Levo 125/ 100 alternate days from 125 daily 2 weeks ago.
I’m getting a referral to an Endo privately, but NHS GP also going to refer but can imagine this will take a long time.
I’m at the end of my tether feeling ill with this. Still off work 4 weeks on.
My question is, is surgery an option?
I’m finding the rollercoaster unbearable and wondering if any members have had a thyroidectomy for Hashimoto’s Thyroiditis? And if so, I’m the UK?
Surgery isn't usually used as a treatment for autoimmune hypothyroidism (unless there was a large goitre that was causing an obstruction)...... the only treatment is adjusting the dose of replacement T4 ( and sometimes T3/NDT) to compensate for any alterations in your thyroid's production of T4/3, (or any changes in how your body is using T4/3 )
Even if someone would do it for you .. it would be a big risk to take ... there's no guarantee you would be able to find the same balance of replacement thyroid hormone that allowed you to feel as well on as you have for the last couple of years.
People who have had a thyroidectomy still have to deal with alterations in their need for thyroid hormone, and still need to find the right balance for them again after 'something changed'... and things can change for no obvious reason ,
illnesses can mess you up,
fT4 / fT3 levels can change on same dose because the way body is using it / or absorbing it has changed over time ,
or your favourite brand of thyroid hormone is reformulated / unavailable etc etc .
You will read many posts on here from people without any thyroid saying :
I was fine on 'x' dose for a few years , and then 'something happened ' ... and now they are having to change dose of thyroid hormone in a search to feel well again.
... so i'm afraid just 'getting rid of your thyroid' isn't likely to be the answer to finding stability .
If you've recently been very unwell, that in itself is likely to be an explanation for you fT4/3 levels going wonky .. and this would probably still happen even if you didn't have a thyroid anymore .. if is not just about how much T4/3 your thyroid produces / or dumps on you during an attack from the immune system... many other complex interactions affect how much T4 we convert to T3 /rT3 and these can be affected by how well we are . how good our nutrition is . how active we are . what level our TSH is. etc etc .
Thank you so much for this detailed help. I think naively I thought you’d have it out, replace and all would be well. This has really helped- thank you. I’ve been going round in circles I think as so fed up now as not feeling well and eager to get life back and be back at work. I think I underestimated the impact the thyroid can have and can now see it’s a life long condition toManage.
I can totally empathise with the "feeling so fed up , and realising there's much more to this than you first thought"
When you get diagnosed you are given the impression that it's just a little matter of "topping up something that's a bit low"
and for a few very lucky people it seems that's all the effect it ever has on them .... chuck some random amount of Levo at them and they bounce off fine ....
but not everyone gets to be that lucky.. and if you've had to find your way here, the chances are 'you are not that lucky' .. welcome to the club
there were 121,554 other people who visited here who didn't get to be that lucky either .. you've just made it 121,555 ... so at least you're not alone .
Sorry .. i know that doesn't really help much .
The more i learn and live with this myself , the more i see it not as a matter "topping up something that's bit low"...
it's more a matter of "finding yourself in front of the controls of a boeing 747 after someone has smashed a very important bit of the autopilot mechanism"
...... and having to figure out how to fly it and keep it level without that bit , by feel ,and by how it responds to what you do with the levers.... and how to deal with what happens to it in a hurricane.
All the things that the auto pilot would previously have had a big hand in....
Our thyroid 'autopilot' is buggered so we have to do a lot more 'suck it and see' in order to fly as straight as possible .
But don't worry.. you will fly straight again , you're just having to handle a bit of 'turbulence' at the moment.
Oh my….. thank you 🤗 feeling tearful as that perfectly describes what this is. A brilliant analogy- it makes perfect sense to me! All a bit of a shock really and your vote of confidence that I’ll get better has come just come at the right time, after a really awful, unsettled day where I’ve felt utterly defeated. Restored my faith thank you! And thank God for this site x
Hi Butterfly,I would say think very long and hard before you decide to have your thyroid out.
I had mine removed over 20 years ago.I was told I didn't have any option, as I had a goitre that was pressing on my windpipe. I was in an overactive phase at the time,had lots of energy,felt on a high,though I couldn't sleep. Then after the removal I plummeted down to underactive,which was such a shock to the system.I couldn't think straight, had no energy to do anything.They say they will give you thyroxine and you will be back to normal, but it doesn't work like that. I will never be back to normal. It's been a long journey to find something that's anywhere near normal.
Thank you for this. I’m so sorry you’ve had such a difficult time. I think I am just so fed up thought it might be some kind of solution, but clearly as you say there, it isn’t. And the Levothyroxine is not a stable thing, is it? I felt like I’d gone into some kind of remission- not normal, but functioning. Then this again! I hope you are at some kind of functioning normal-ish point (obviously I’d wish you were fully better) it is one heck of a rollercoaster and not a fun one at that!
Thank you for saying- it’s important I’m aware as it’s so difficult coming to terms with it all and the impact it’s having and going to have on my life, like so many of us here. I wish you the best and stable days ahead x
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