Tired crash

[Pastlives]

Hi,

I haven't posted for a while. I have Graves (since Oct last year) and was on 10 mg/20 mg Carbimazole alternate days. My levels connected to this dose, in February, were:

FT4 23.1 pmol/L High 10.5 pmol/L - 22 pmol/L 13/02/24

FT3 7.7 pmol/L High 3.1 pmol/L - 6.8 pmol/L 13/02/24

TSH <0.01 mIU/L Low 0.27 mIU/L - 4.2 mIU/L 13/02/24

However over the last few months I started to feel overwhelmingly tired - like the thermostat of Graves turned on and caused a huge fatigue crash - that would pass after about 10 mins. I would have these crashes frequently, I was taking Magnesium, and p5p and HRT. Mornings would start off ok. Then the crashes would happen. I tried Vit D and that helped a bit. I also started to see the crash coming on strong after sugar and tea so began to avoid these a bit. It helped to focus on protein - started eating a boiled egg after a few hours from breakfast - and loading lunch with protein. I was having micro gains with the tiredness. Finally contacted the Endo clinic and took a blood test:

FT4 11.5 pmol/L 10.5 pmol/L - 24.5 pmol/L 24/07/24

TSH 6.17 mU/L High 0.27 mU/L - 4.2 mU/L 24/07/24

Dr left a message on phone saying I needed to lower my dose, saying the dose I was on was too high and I was going towards hypo. Then a letter following call saying to take 10 mg in week and 20 mg at weekend. I had already reduced the dose to 10 mg and had begun to feel better - so wrote to them and said I wanted to only take 10 mg.

I wanted to share this as I feel I respond very quickly to Carbimazole - I had only been taking it a few weeks in December when I went from:

FT4 58.3pmol/L 18.12.23

FT3 27pmol/L 18.12.23

TSH <0.01miu/L 18.12.23

to

FT4 18.8pmol/L 8.1.24

FT3 7pmol/L 8.1.24

thyroid receptor antibody 6.34u/L (0-0.4) 8.1.24

A massive drop.

I feel the Dr doesn't really register this shift - also that they are happy to leave it long stretches between blood tests. My sister is a GP and she said you should test after 6 weeks on a new dose - so I will request a blood test.

Its hard to know if it is menopause or Graves - or how I eat - or work or life - but I started to think I had something else. However the adjustment in dose has reduced these crashes.

I can really feel when my thyroid is doing something - either trying to release hormone or being attacked by the antibodies - its normally in these moments - where I can feel a sensation in my throat and jaw and cheeks that the crash happens.

Other symptoms are a completely slowed metabolism - headaches - achy on waking.

Sharing this here in case helpful, but also to see if anyone has similar experience.

xx

[Highroid]

Thanks for sharing this. I also found that my thyroid levels responded very rapidly in response to changes in Carbimazole, and at some point I was getting blood tests more frequently than the standard 6-8 weeks.

I was put on "block and replace" (a blocking dose of Carbimazole, and a replacement dose of levothyroxine). I found that levelled-out the up and down swings. But that didn't completely manage the changes sin levels, and I was given a total thyroidectomy.

Since then my levels have been pretty stable on levothyroxine.

Good luck with your journey.

[pennyannie]

Hey there again :

When metabolism is running too fast as in hyperthyroidism or too slow as in hypothyroidism the body struggles to extract key nutrients through food no matter how well and clean you eat -

and non optimal levels of ferritin, folate, B12 and vitamin D can compound your ill health further.

so it would be a good idea to get these run and post back on here the readings so we can advise where in the ranges your optimal levels are likely to be.

I believe your Graves - immune system attack is now over - and when with Graves it's hard to know what's going on as it can affect your whole brain /body equilibrium.

Your TSH has bounced back to over 6 - suggesting you are now hypothyroid -

with your thyroid levels - T3 and T4 are now much too low to allow you to function well -

with you having ' crash landed into hypothyroid land ' which can be just as debilitating as being hyperthyroid.

We don't have a T3 reading ? -

and your T4 is now only around 7% through the range -

so the AT drug needs to be titrated down as we would aim to keep your T3 and T4 at around mid point - 45/50% through ranges at this point in time.

[Pastlives in reply to pennyannie]

Hi,

Thank you for your response - and apologies for slow reply ( I have been away).

I had been managing better on the lowered dose (from 20 mg/10 mg alternate days to 10 mg per day) but the symptoms of fatigue have returned (aching, can't get enough sleep, run down and the crashes - though not as bad). Maintaining protein intake helped and I am taking one p5p and 1 vit D a day.

I have emailed the endo team today as my next appointment isn't until well into October - with the blood text due then - which seems a long way away since I started the new dose of 10 mg a day. I have asked for another blood test.

In terms of the other blood test I will see if I can get that through the GP - which is tricky/impossible.

I do feel like the endo are not interested in anything other than the levels in relation to dose (which they are not really on either - its only when I report symptoms that I get a blood test).

I have been feeling my digestive system is really impacted and it almost feels like I can't take sugar. Have been reading about how to adjust my diet to be more protein led - not quite made that adjustment yet!

I can't quite believe that the treatment allows you to go hypo - it feels blunt and that as the patient you just have to sit out increasingly debilitating symptoms.

[pennyannie]

Yes - it does appear to be more a numbers game with little consideration / understanding of the debilitating symptoms which can occur either in the 'so called ranges' -

let alone to have fallen through them !!

The system is also very backed up and you are likely waiting longer between O/P appointments than I was back in 2004/5.

I'd be inclined to reduce the 10 mcg to 5 mcg a day -

just buy a pill cutter from the chemist for a few pounds - if you have 10 mcg tablets - halve or quarter the 10 mcg - if taking the AT drug twice daily.

The immune system attack looks to be over - so I think it now more about symptom relief and when so flat it's hard getting through the day let alone waiting another 30 + days :

[KimyH]

Hi Pastlives

I'm having very similar issues. I was hyper TSH june <0.02 FT4 highest 37.6 ( 8-18 ) FT3 10.8 ( 3.8 ) started on 20mg carb - Trab antibodies 8.5, now my TSH has risen to 9 something and FT3 and 4 both in range but on the low side ( sorry details on another post ). carb has been dropped to 10 in aug and now down to 5 after crying for 3 days and husband begging for blood test. Oh and insomnia of the chart with nasties of flushes and tremors. Having issues with blood sugar- getting week and shakes a few hours after eating and blood sugar is high, struggling to deal with it. gonna try adding more protein in and see how i go. Was ultra paranoid about food, but trying to get better. but it does take it's toll on you. This seems to be the best place for help. I'm looking at a 32 week for an endo so have gone private- still over a month for that but can not do this for another 32 weeks with docs refusing to look at bloods untill 6-8 weeks- seems I'm pretty sensitive as well. Fingers crossed 5 is the right dose.

[Pastlives in reply to KimyH]

Hi KimtH,

I am sorry - I missed your reply/post.

We seem to be having similar responses to Carbimazole - and similar symptoms issues not being dealt with.

I have been increasing protein, and added Vit D and ground flax seed into diet. I carry almonds in my bag and eat them when I feel tired. My sugar crashes seem to have abated though. I am getting a blood test next week ahead of my endo apt.

I am on HRT and I am never sure if my symptoms of menopause or Graves.

I have also stopped drinking.

The progesterone I take as part of HRT helps with sleep thankfully. Although magnesium is supposed to help - which I was taking.

I hope you are feeling better on the lower dose.