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how quickly do hypothyroid symptoms emerge

(17 Posts)
PoppyShakespeare Tue 26-May-15 14:46:10

(does that even make sense?) I'm a bit obsessed with the fear of thyroid becoming underactive while being treated for hyperthyroidism - still on what feels like massive dose of carbimazole (20mg x2 day) and in the last few days have convinced myself it is underactive

it's only a week or two until next endocrinology check up and last time it was still overactive but improving but am 1. hypochondriac and 2. v fearful of carbimazole and hate taking it

Clarella Tue 26-May-15 15:51:53

Hi poppy (sorry me again!) I think it's a tricky one as depends on lots of factors. From my experience recently of being on too much thyroxine and feeling unwell, I definitely went through a phase of thinking 'I now feel hypo' when I lowered my thyroxine dose slightly, however a few weeks on I feel stronger and mostly well. I just got my results and Tsh is 0.44, just in range but perfect for me.

They way I understand it is you may feel weak and tired for a while whilst your system recovers - esp your muscles - so a bit hypo in a way, but slowly it should even out.

And as i found iron levels need to be right for this to work well; you may be feeling the effects of mild anaemia etc, which has a similarly hypo feeling (after experiencing it myself).

Ferritin is best over 70/80 really so do chat to endo about this.

It's soooo hard and sooo exhausting and takes so long to even out or 'good' levels to be revealed in the body - i think it's fully understandable to be feeling anxious about it. I've been there many times. Try to reassure your self that going hyper or hypo is actually fixable, might be shit for a while but IS fixable, but takes time.

Big hugs, you're doing really well xx

( I'm not stalking you just try to answer thyroid qs!)

Clarella Tue 26-May-15 15:52:45

Plus weight gain may be temporary fluid retention etc

PoppyShakespeare Wed 27-May-15 07:35:33

please don't apologise, you are always so brilliant at reassuring me!

I wasn't in range last time so wondering how likely it was to have gone through the range and out the other side and been there for long enough to get symptoms - although when it's induced by meds it must be quicker?

I will make a list of things to ask endo, although first I see thyroid nurse then him at the end of the month, nurse might be good person to talk to

I really appreciate your replies flowers

PoppyShakespeare Wed 27-May-15 07:36:29

(my weight gain is definitely fat but it's ok!)

Clarella Wed 27-May-15 09:27:37

I really don't know poppy, I suppose it could be possible, but at the same time I suppose it's where the tweaking comes in. I do know I've felt almost hypo symptoms when my bloods say I'm hyper! The one definite symptom for me is bowels. I definitely become quite constipated when hypo and food shoots through when hyper. I then start to notice I'm foggy headed, need to nap, struggle to multi task but this tends to be later. But maybe I don't notice? My strength starts to go but I think that's after a good few weeks. I remember in pregnancy my numbers said I was hypo but it was a few weeks later - around 3 months - that I really noticed the symptoms. But I think sometimes when hypo you get by on adrenaline for a good while until your body really starts to suffer. However, if you're already weak from hyper it might show earlier.

Do keep writing lists of symptoms and questions to ask the professionals, I now don't think we should be afraid to ask or mention certain symptoms. I know I failed to mention itchy bones for too long, not really knowing it could be an issue, it wasn't exactly painful, just irritating. (But indicated low iron) so noticing things like bowels could be helpful.

What were your last results? Too high or too low?

PoppyShakespeare Wed 27-May-15 09:47:27

Last results were still too high but heading towards the normal range. They did ask me to tell them anything, anything at all, that I'd noticed but of course I couldn't think at the time confused

Clarella Wed 27-May-15 10:02:29

Honestly poppy, it's so deceptive! And then you start going the other way and becoming hypochondriacal about it!

I was thinking - I know you'd rather not have it removed, and I know nothing about the graves experience, some seem to do well on the meds, others not, but being on the thyroxine- if you are aware of the symptoms, results etc and your gp is good at aiming for your results to be top range (so tsh between 0.3-1.5, t4 around 20) and, if symptoms remain after a long period at this level they check other factors such as iron etc, then investigate if you need t3 too (this isn't nice guidelines BUT is an option some endos do, if they can demonstrate your t3 does not respond to a raise in t4) - then actually I feel I have more control in a way actually.

T4 has a long half life, so it's hard to get the levels right AT FIRST and for the body to respond, but increasingly I've found gps , and the endo I saw, agree that it's ok to have a suppressed Tsh if the patient feels well.

Personally, my experience after being everywhich way is that when my iron is good, I'm finding Tsh 0.4 (in range) is a tad hyper. (A few weeks ago I definitely felt hypo on this dose, it's taken some time for my body to adjust) I'm taking x3 150 and x4 125 each week. I'm going to see how I go over the summer and consider another bit of a drop. It's splitting hairs but makes such a difference.

But, once things are tweaked you may be great as you are smile

PoppyShakespeare Wed 27-May-15 10:39:24

Ok that's good to think about. He did say at first appointment that surgery or RAI is the only "cure" but that about half of people will do ok without it for several years before it comes back and there is no way of determining which people fall into what group until the first year/18 months has passed. That's such a long time!

The people I know in real life all say life is so much better for them post-surgery but endo said there are some people who never quite get well again but is a v small minority. It's a bit of a rubbish thing to have really, and you can still get the eye disease even when thyroid is under control. Yuck.

PoppyShakespeare Wed 27-May-15 10:42:03

My t4 has always been about 12-13 and so I assumed we would aim for that, as that's my sort of baseline since about 1999 or whenever I started lithium. But I feel ok now I think, just wondered if everything was slowing down a bit too much.

It seems like I forget about it for a while then have to obsess a bit!

Clarella Wed 27-May-15 14:21:12

I think the lithium complicates it a tad as I know from my friend's experience that lithium can both trigger thyroid disease if there's antibodies present (not sure re hyper but can hypo) as well as somehow affect actual thyroxine levels.

Do they test t3 for you too? The thing is some t3 is made by the thyroid itself, as I don't have a thyroid anymore I need - like others with no thyroid - a little more t4 (around 20) to make up for it. I don't understand what happens in hyper though. I know beta blockers reduce the conversion of t4 to t3 very slightly, and it will be t3 causing all the hyper symptoms, but t4 is a more stable measurement. It's a pro hormone.

So I guess you need to be rigorous in noticing symptoms but perhaps any that persist for a month or more? For example, around my period I definitely feel hypo for a week or so but it's other hormones at play. Perhaps track symptoms linked to periods too to see if there's any pattern- this is what I'm doing but because of hypermobility- and aim for levels / meds to be at the same amount for a couple of months or 3 to see?

Maybe ask them what t4 and tsh they would like to aim for given you are on lithium? I do feel it's going to have to be a very bespoke tinkering to find out what numbers are working for you.

I have been exactly the same, and panicked over how I feel, thought to change the dose I'm on in a knee jerk way but it doesn't help the LONG term tweaking, if that's makes sense?

Your endo might be able to confirm how much more quickly you might feel the effects of going hypo - definitely ask this.

Hyper I think is much harder than hypo, inc due to thyroid disease, hypo 'just' relies on good management from gp and patient.

I really would contact the BTF about a lot of these qs, esp a person who has had the condition and is a volunteer. To sort of ask those 'is this silly qs' and 'how quickly did you' etc - obviously taking it as their experience and not gospel, but it might help?

I've got a stack of newsletters; there's often stories within them of experiences, usually hyperthyroidism to be honest.

All I can say is my levels of iron and thyroid are now spot on (3 months after last tweak) but my body is still regrowing itself and I've only started to notice glimmers of my former self in the last 3 weeks. I've got to do a lot of physio too.

PoppyShakespeare Fri 29-May-15 12:26:49

Eurgh it IS complicated one day I will get my head round all these thyroid things grin lithium is a pain because for one thing it made the radioiodine uptake scan not work and I was hoping that would tell us something useful

yeah they do now test t3 t4 TSH (still didn't have any of that but it will come?) and then the other ones must be antibodies I think it says TPOs on the form and another one that I've forgotten but whatever they were pointed to graves but doesn't completely confirm it

none of my results have been updated online since March which is annoying but I can get a printout from the thyroid nurse and ask what we are aiming, I guess just at least back into range initially and come off carbimazole or reduce it

PoppyShakespeare Fri 29-May-15 12:32:21

nobody was wondering but I really really hate taking carbimazole and cannot wait to be told to stop taking it

Maidofdishonour Sat 30-May-15 23:38:50

Hi Poppy,
Can I ask why you are so scared of the Carbimazole? I have been on it for nearly a year and I have monthly liver function tests and haven't experienced any problems yet.
My endo plans to keep me on it for 18 months with the hope that the Graves will burn itself out.
My biggest fear is a Thyroid Eye Disease. I hate anything to do with the eyes and the treatment sounds horrific. I have a friend who is an ophthalmic surgeon and a specialist in TED. She says that RAI can be fine so long as there are no symptoms prior to having it but that surgery is a better option. I have to confess that I am starting to think about having the surgery if my levels don't stabilise soon.

PoppyShakespeare Mon 01-Jun-15 23:27:06

I think I most hate the idea of it slowing down everything. Realise this is irrational and that actually was feeling v unwell until carbimazole started working but I think it doesn't help that the endo's attitude was very 'you don't want to be taking this long term, it's better ultimately to have the surgery or RAI'

but deep down I'm grateful it was diagnosed and treated so quickly, am trying to remind myself that it's what caused my mum's atrial fibrillation and subsequent stroke and am lucky mine is coming under control quite quickly etc

PoppyShakespeare Mon 01-Jun-15 23:31:01

am horrified by anything to do with eyes too

I would not be brave if I had to have orbital decompression, it's rare though I think

Opalemt11 Sat 01-Oct-16 04:37:17

I was treated for graves with RAI and got thyroid eye disease, I didn't know that RAI has been known to increase development of thyroid eye disease, If I could go back I would have had a surgical removal instead.

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