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What could possibly be making me so tired? I need new ideas please!

42 replies

thelongroad · 21/02/2023 14:55

For about 18 months now I've been overcome with fatigue every afternoon. Most days I literally cannot get through without having a nap - I have even fallen asleep in the car while waiting for DCs. It is an absolute utter exhaustion unlike anything I've ever known before.

A year ago I finally went to the doc to get it checked out. The fact my nails were splintering made me think it was probably iron related.
Blood results showed severe iron deficiency AND underactive thyroid (since diagnosed as Hashimoto's).
I was put on iron and thyroid meds immediately.

A few weeks later, I had a 2 week period where I suddenly felt a LOT better and didn't need to sleep every afternoon. And then it went back to how it had been with the tiredness.
My nails grew and were good by autumn.
And then they just fell apart again.

During all this I've had numerous blood tests. All showed iron was very low but within range, thyroid was steadily improving. We increased meds as I still had all the symptoms. I also asked for Vit D and B12 to be checked - D was very low, so have drops for that now. B12 and everything else they checked was fine.

A month ago I went back AGAIN to see different doc as I am still not seeing any improvement with the tiredness. Nails are very slowly getting stronger. But I am still exactly the same: every afternoon I essentially zonk out on the couch. Doc suggests waiting to see if it "gets better" as blood results do show improvement but I think - it's been a YEAR, surely there should be some change in symptoms by now?

What the fuck could it be? I can't take more iron - firstly I have to pay for it myself and it's quite expensive at that dosage, secondly it's a nightmare juggling the dietary requirements with the 3x a day iron (and obvs avoiding the thyroid meds too). It's also NOT HELPING.

Does anyone have any ideas at all? I'm at my wit's end.

OP posts:
Calling · 26/02/2023 14:25

Could it be alcohol? The glass of wine every day? I know that you don't binge and I am suggesting anything of the sort, but what do you think?

It all sounds a drag.
I have to sleep most afternoons also.

MzHz · 26/02/2023 14:29

Menopause does weird things to blood sugar - your afternoon crashes could be sugar related. Watch how you’re using carbs

Whataretheodds · 26/02/2023 14:36

When are you drinking your coffee, and has that changed? It inhibits nutrient absorption but I'm also wondering if you're getting a crash.

newtb · 26/02/2023 14:37

Have a look at the about thyroid site in the US. They say the 'normal' dose is 1mcg of levo for every pound of weight. So, if you weighed 15 stone, you'd need 210 mcg per day. 75 seems rather low, unless you weigh 5 stone 5 lbs.

It seems once you start on treatment your thyroid is so knackered it eventually gives up. Fwiw I'm on 100mcg of tri-iodothyronine equivalent to 1000mcg of thyroxine because after 10 years, found I couldn't convert from T4 to T3.

Have you seen an endocrinologist? Know a brilliant one near Limoges.

Rebel2 · 26/02/2023 14:54

newtb · 26/02/2023 14:37

Have a look at the about thyroid site in the US. They say the 'normal' dose is 1mcg of levo for every pound of weight. So, if you weighed 15 stone, you'd need 210 mcg per day. 75 seems rather low, unless you weigh 5 stone 5 lbs.

It seems once you start on treatment your thyroid is so knackered it eventually gives up. Fwiw I'm on 100mcg of tri-iodothyronine equivalent to 1000mcg of thyroxine because after 10 years, found I couldn't convert from T4 to T3.

Have you seen an endocrinologist? Know a brilliant one near Limoges.

They started me on 25, I'm 5ft 10!
It got upped after my lovely haematologist rang the GP and asked if they were treating hashimotos by homeopathy BlushGrin
Suddenly I got 75 (and I'm 16 stone...)

TSH was around 1.2 last time it was checked but it was 7.8 before they agreed to put me on levo

thelongroad · 26/02/2023 16:19

Haven't seen an endocrinologist but think I have to push for that now. I need someone who specialises and knows what they're talking about.

I'm 6ft and weigh around 11.5 stone at the moment.

@Whataretheodds I have a coffee in the morning, about an hour after taking the Levo, and another mid-morning. Occasionally one more in the afternoon. I've not noticed any difference whether I have the coffee or not. Nor with the alcohol, @Calling . Stopping made no difference at all.

Do any of you take the Levo in the evening? I know it's supposed to be on an empty stomach, which it then wouldn't be, but I have one friend who does this and her doc has adjusted her dose to slightly higher because of it - it means that she takes it regularly as opposed to mornings which would be more haphazard with her.

OP posts:
Rebel2 · 26/02/2023 17:59

@thelongroad I do, always have. Last thing before bed

thelongroad · 26/02/2023 18:20

@Rebel2 When is your last meal? I mean, how long since you've eaten anything before you take it? I'm wondering if it might be more effective that way for me...

OP posts:
SunshineLollipopsAndRainbows · 26/02/2023 18:46

Sorry OP. I can really empathise with that crushing tiredness. I have B12 injections tri monthly which have made such a difference - you said your B12 levels were midrange but I seem to remember there is more than one test for B12. I would also go down the menopause route & ask your GP what you can take. Are you on HRT or anything else?

Rebel2 · 26/02/2023 19:37

@thelongroad it varies but there's always at least 3hrs before I take it, sometimes more

weebleswobblebuttheydontfalldown · 26/02/2023 23:08

I would look into coeliac disease - especially as you have one autoimmune condition eh ugh makes it more likely. I you will need a proper diagnosis though read the NHS booklet

weebleswobblebuttheydontfalldown · 26/02/2023 23:08

www.nhs.uk/conditions/coeliac-disease/diagnosis/

PeachiceT · 26/02/2023 23:20

Ask for a coeliac/Celiac blood test , I had low vitamin D and numerous symtoms when diagnosed.

EllaPaella · 27/02/2023 07:17

@weebleswobblebuttheydontfalldown that's interesting- I have Hashimotos and my folate is always low/borderline low. My sister has coeliac disease yet I have never been advised by my GP that I should be tested for it. I also have periods of tingling in my hands which seems to come and go. According to that NHS link I should get a test.

thelongroad · 27/02/2023 19:52

So today I went to work in the morning, felt fine, came home, did lunch, and then literally passed out from tiredness on the sofa. I mean properly zonked out like it was the middle of the night. It's insane. And i will sleep well tonight too - the napping doesn't affect that at all.
I'm looking at the coeliac thing now...

OP posts:
ironhelp · 27/02/2023 20:08

Hi. Have you had your "iron saturation" levels checked?

weebleswobblebuttheydontfalldown · 28/02/2023 16:01

Glad you are looking into coeliac as it's commonly under diagnosed and doesn't always present with gut symptoms. It's definitely got a higher incidence in Thyroid conditions and if you have it in your family too. It's definitely worth ruling out, good luck 👍🏻

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