Hashimoto's

I have been told I have Hashi, and have been on 125mg Levothyroxine for 18months, however, although all my aches and pains have gone, I wake up at night 2/3/4/5/6 times with the feeling that I am sinking,can't breathe and am about to die, so scary. My gp has reduced my Levo to 100mg as he says my scary symptoms point to sleep apnea, he thinks I have symptoms of being over active, but I can tell almost immediately that I need the 125mg, as I feel depressed, my diet stops working, and my joints hurt sooooo much. It seems I need 125mg, but it doesn't suit me. Does anyone else have this problem with hashimoto's

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  • I haven't been diagnosed with Hashi but I recognise the feelings you are having.

    I have woken many times ove rthe last few years with this awful sense that something terrible is happening, literally like you are in the throes of dying in a real panic mode for what appears no reason at all.

    On research I discovered that it may well be linked to very low sugar levels - sort of a hypoglycemic attack whilst you sleep. Problems with sugar load and balance are fairly common I beleive with thyroid problems as low thyroid interferes with sugar stabilisation.

    I found that as soon as I was fully awake it went away of its own accord. Absolutely bizarre.

    Whether it is exacerbated by over active hyper events I can't say for sure. I'm very low on ft4 but apparetnly producing loads of ft3 in its place at the moment so maybe yes, it could be influenced by being hyper.

    Sorry that doesn't really help much but I do understand how scary that feeling is and I can say that it seems to come and go with myself.

    Sometimes happening for weeks on end and then nothing for a long period of time. So I'm pretty used to it swinging about all over the place and I don't feel so alarmed by it now. Just NO SUGAR after 6pm for me.

  • Yes me, I have been discussing this issue with some kind sole on here, I too have hashimotos and I am not medicated and still have the same smptoms? i have considered sleep apnea but it dosent ring a bell, I feel my multinodular goitre is the issue, I dont relly know? the mind boggles and it is really frightening indeed.

    I dont feel like I am sinking but more my airway cuts of for a few seconds then I wake up alarmed.

    I am looking in to this.

    hope this helps x

  • Hi I have Hashimoto`s, Make sure you have a free T3 test and vit D( hormonal ) you may need treatment with both of these . If you need D then you need a calcium test before treatment Then the other relevant tests, bloods. Also look out for bad voice and swallowing, then you need an ultra sound. Also as autoimmune be aware that you can have lots of other autoimmune diseases gradually.If you are stopping breathing, day or night, it can be clearly heard by other people and you wake up choking many times a night, you do actually stop breathing. Sleep aponea needs a CPAP, horrible but effective, If you thnk this is you, then go to a sleep clinic, large hosptial and have a night monitor, 1 night, to use at home , analysed, very good.

    Best wishes,

    Jackie

  • Hi Again, just realised you ask about sugar, Hypoglacemia is not diabetes but usually means you need a snack ( not sugar) ever few hours. It is not dangerous ,just unpleasant. however, diabetes is hormonal and autoimmune so you need blood tests. if you are seeing an endo.ask for the 6 hour glucose test, this shows hypoglaceamia and of course, diabetes but must be done in out patients for safety. You may well be borderline diabetic as I was for a long time and had Hypoglacemaia. Try and have the diabeic diet, not as you would imagine, see Diabetes UK site and the USA one ( better)

    Jackie

  • Dylansmum, that sounds like adrenal fatigue to me. I used to have that, waking every hour on the hour. Are you getting enough salt? Are you taking vitamin C? Fatigued adrenals need huge amounts of vit C. You could try getting them tested but I'm not sure you can on the NHS.

    Hugs, Grey

  • Hi I have Hashimoto's too, diagnosed almost 3 years ago. I have suffered very disturbed sleep patterns over that time - although not as bad as you describe. My endo started me on Vitamin D last year and since then sleep has improved so much. I still have the occasional night where I'm awake every hour, but few and far between. Best wishes Mary

  • I recognised the feeling straight away - sinking into oblivion, deeply scared, The feeling of doom and dread, I usually have to get up and dust or something physical. Dusting 3 times a night is tiring! I also have dreams in full technicolour, terrible nightmares, so real it takes a while to realise they are not true.

    It has lessened somewhat since I have been taking T3, but I will try the Vit D and sugar thing, to see if this helps. Mind you, this may mean that the house does not get dusted!

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