Surely not... ?

[Lotika]

I think I might struggle to explain this without sounding like the neurotic I can be sometimes. We don’t make old bones in my family (cancer) so I tend to worry a little when I feel under the weather.

Since starting a T3/T4 trial on the NHS, I’ve been benefitting from the T3 (less joint and muscle pain, etc) but feeling exhausted. This has been going on for two months now and I largely explained the exhaustion to myself in terms of the massive drop in levo. Except at 3 in the morning when I can’t sleep and I start convincing myself that it must be something more sinister, which started making itself felt at the same time as the trial!

So, what to do about the worry? For my own peace of mind, I thought I would try upping the levo from 75 mcg to 100 mcg for one day to see what happened. If I feel OK, then it’s thyroid, stick with the lower dose and hope it either rights itself or endo increases it at the next test. All good. Stop worrying.

So, in the 100 mcg morning I immediately felt like I’d been hit by a bus. Mmm, not good. By the afternoon however, oh hello world! I felt awesome! I knocked back to 50 mcg today to even out yesterday’s blip and I still feel awesome now. I wonder if I will hit the wall tonight?

It could of course be totally coincidental. I’ve been on this 75 mcg T4 dose for 3 weeks and Ive never had an uptick after longer than 2, so I guess I’m programmed not to believe it is the dosage settling down - a personal blind spot, perhaps? And I always thought that moving the dose around every day was a bad plan. But what if it isn’t? Maybe, at worst, I can feel good for 24 hrs out of 48 like this... ?

My mother used to say that I reminded her of a race horse in a parade ring, ready to bolt at 45 mph in any direction at a moment’s notice. (I hope she was thinking of the legs not the face!) And I feel like that again... I used to struggle with too much energy, too many thoughts and that’s why I ran, did yoga... just had to try to exhaust myself; I was pretty ADD, prone to periods of hyper concentration sometimes and having the attention span of a gnat at others; I was like it since childhood and took a battering for it in every school report they ever wrote; “she’s bright but so inconsistent, if only she would apply herself”, and my personal favourite “manages to pay attention whilst not really listening”(?!) and my mum would come home angry so with me after parents’ evening!! Anyway, here it all is again. I wonder if it will last through the afternoon and evening? I wonder if the dose split has anything to do with it? Surely not... ? I mean I always think I’m pretty quick to react and adjust to levo, but.. ?! I struggle to imagine that uneven dosage could be better for anyone, to be honest... still, I will go back to normal tomorrow and see what transpires. In the meantime, 24 hours of feeling good is rather nice and the confirmation I needed that I Will Get There... !

L x

[tattybogle]

Dear Lokita's Parents,

Lokita is doing really well at The Acadamy of Amateur Endocrinology.

She's a joy to have in the class , if a bit mischievous at times.

She does have an tendancy to overthink think her thyroid dose though,

And would do well to learn to be more patient.

You will be pleased to hear that she is showing great promise in the 'Writing To Your MP' Class.

Yours sincerely.

Academy of Amateur Endocrinology .

[Lotika in reply to tattybogle]

Sounds about right! Refuses sit still and pay attention in Patience 101, and is somehow convinced that it doesn’t apply to her!

I mean it does sound like a really boring class, to be fair...

[tattybogle in reply to Lotika]

For what it's worth on the 'feeling the difference' front .... for example ,i split my levo dose, i take 62.5mcg AM. and 50 mcg bedtime. Last night i forgot to take my bedtime 50mcg levo. I woke up at quarter to four in the morning . when normally i sleep well. This has happened both times i've forgotten my 'bedtime' dose of levo .

According to the 'rules' of how T4 works , this is nonsense, but still.... "i know what i know"

It's not that i think the T4 has run out at 4 oclock or anything complicated like that ... but i do think my body knows what it's used to and senses "something is not what i'm used to "

[Lotika in reply to tattybogle]

Ha! Maybe my body has been fooled into responding differently by the same logic?! Quite honestly, my mind just boggles on here some days at how differently we respond to meds, splits in dosages, dosage changes... ! I think I’m going to go back to a solid 75 mcg until I feel worse again (because my body doesn’t do slow adjustments, so I reckon I will by the weekend, hence my non-attendance at Patience 101 classes!) and then mess around with alternate 100 / 50 / 100 to see if it makes a difference again. Why not!? The thyroid equivalent of rearranging deck chairs on the titanic during a dose change!

[humanbean]

Having problems in the morning and then feeling better as the day goes on, followed by problems sleeping sounds very like someone having issues with their cortisol levels.

Unfortunately, low cortisol and high cortisol share several symptoms and trying to work out which you have from symptoms alone is not reliable in the slightest.

The best way of determining how well your cortisol compares to healthy levels is by doing a saliva cortisol test. There are several companies that do them, but they vary a lot in how good they are. The best ones are from Regenerus Labs and Genova Diagnostics. Personally I would go for Regenerus because they are happier than Genova to deal directly with the public. To use Genova you have to use Thyroid UK as a middle man and get your results from them rather than from Genova.

The things that make Regenerus and Genova the best tests are :

1) They both involve four tests of saliva cortisol. Paying for more costs more but doesn't really tell you anything terribly helpful.

2) They both include a test for DHEA. Most companies don't include this.

3) Both companies use reference ranges that don't use zero as the bottom of range. Having zero cortisol is NOT healthy for anybody except a corpse.

4) Other companies don't seem able to provide actual results for all four samples, particularly if they are very low (as you would expect them to be at bedtime). If your cortisol is 0.2 nmol/L at bedtime you need to know that. Being told your result is < 1.0 nmol/L is NOT helpful, particularly if the reference range is < 1.5 nmol/L.

The two tests I refer to are :

Regenerus : regeneruslabs.com/products/...

Further info : thyroiduk.org/help-and-supp...

Genova Diagnostics UK : gdx.net/uk/product/adrenal-...

Further info : thyroiduk.org/help-and-supp...

[Lotika in reply to humanbean]

Thank you for such an informative and thought out response re cortisol!

I’m currently blaming everything on fT4...

I made it sound like I am always unable to sleep at 3am... I am in general sleeping much better since the introduction of T3. Proper restorative heavy sleep, the likes of which I haven’t known in years.

But I do struggle sometimes. I mainly attribute this to the fact that the drop in levo means I have less energy generally, so I am much less active. I think I need fT4 around 70% through range (which is where it was on levo only) and it wasn’t close in the last test. And I am not working and I have somehow slipped into the habit of going to bed at 2 am and reading for a bit and getting up at 10 am... so, poor sleep management really! And then I do naughty things like drink all my alcohol units for the week on a Friday night which invariably doesn’t do great things for the sleep pattern... !

When I dropped levo from 100 mcg to 50 mcg I would feel OK ish in the morning and then hit a wall of tiredness late in the afternoon / early evening. This has continued since upping to 75 mcg. But it didn’t happen on 100 mcg yesterday.

I feel like suddenly taking 100 mcg yesterday was responsible for the morning “ugh” I felt, as it is not representative of my mornings more generally... and added to the absence of the afternoon crash maybe...

I do suspect my cortisol was all over the place to somehow deal with inadequate T3 whilst I was on 100 mcg levo only before the trial. I’m totally making that up, mind, by which I mean to say that I have no idea if those things would or even could be connected, just that I have pondered it. I wonder if I read something here and made a connection, valid or otherwise, but just can’t remember what.

So, I will get to the end of this dose change and see how I am and then I think I will look back and investigate cortisol depending on what the thyroid bloods suggest I should be feeling and any discrepancy between the numbers and how I think I’m feeling, unless you are seeing a red flag in my longer explanation which suggests I might do well to do it sooner?

[humanbean in reply to Lotika]

unless you are seeing a red flag in my longer explanation which suggests I might do well to do it sooner?

No I didn't see anything which makes it urgent. I think it is quite common for doctors (and patients if they have any say in the matter) to reduce Levo too much when they add T3. Depending on their thyroid function test results it might not even be necessary to reduce Levo at all - but then I haven't looked back at your history to check your results.

You might want to consider trying an adrenal cocktail once a day. It is cheap as chips, can be made at home and can be stopped (and started) whenever is convenient.

You might find the following link of interest (read the whole thing), written by someone whose cortisol was quite low but not to the extent that Addison's was suspected, but please ignore the advice about adrenal glandulars. Unless you know you need them, having checked your cortisol with a saliva test, they might end up doing more harm than good - so don't take a glandular before you've done any testing.

healthunlocked.com/thyroidu...

Good luck.

[thyr01d]

Just wanting to say hi to another who can be neurotic at times!!!

[Lotika in reply to thyr01d]

Ha! Thanks, that made me laugh!