What's happening to me?: Hi, hoping someone can... - Thyroid UK

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What's happening to me?

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Hi, hoping someone can try and help me figure out whether this is thyroid related, or if i'm just losing my mind?

This is what is happening, I am barely getting any sleep, getting to sleep and staying asleep i'm struggling massively with.

During the day, I can go from being ok one minute, to feeling so angry and very emotional within seconds of each other.

I am retaining more fluid than ever before, my legs feel so tight and my ankles and feet swell so much I can't wear any shoes.

I am getting like stabbing pains in my head, and headaches most days.

I have no appetite, am thirsty a lot more than I used to be.

Mentally, I feel sometimes like things are in slow motion, or that I am in an alternative reality, some sensory problems, feel like i'm about to faint or lose consciousness, mentally slower, some dizziness, and just not feeling 'with it' for want of a better description. I dread communication via phone or face to face, because I don't seem able to say what I need to, or make myself understood.

Could this be down to being on too low a dose of thyroxine? I am currently taking 150mcg for Hypo..

I am having a Short Synacthen Test next Thursday, when he will re-check my thyroid levels too..

Sorry for the long, possibly boring post, i'm just a little bit scared of not knowing what is happening to me and why..

Any comments/feedback welcomed..

Thanks..

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14 Replies

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puncturedbicycle9 years ago

Poor you, how awful. Do you know what your last test results were? This could be under- or over-medication, vitamin deficiency or sex hormone-related. Are you peri-menopausal?

I must say, I've got maybe 80% of these symptoms and I put them down to sex hormone changes, but I'm holding fire on my thyroid issues until I get my next blood test next week.

Having said that, the 20% of symptoms above I don't suffer with I put down to taking t3. No more swelling/bloating or depression/depersonalisation.

Sorry you're so miserable. Let's get to the bottom of it! x

• in reply topuncturedbicycle9 years ago

I'm sorry you are going through similar symptoms.

I had a full hysterectomy in 2004 so menopause would surely be ruled out by now?

My next set of thyroid results will be more accurate next week, as I wasn't consistently taking the dosage that my previous Endo wanted me to. (Long story as to why, so will leave it at that)..

It could very well be vitamin deficiency related.

My last LH level was 19 and FSH was 59 both say high and appropriate next to them..Not sure what the IGF1 is, but that was 124 (94-252)..

Rapunzel9 years ago

Hey chelle1

What a bummer. Perimenopause brought many similar symptoms my way - I asked my GP and he told me I was to young at 42. Four years later I was post menopausal. I don't remember where I read this - sorry - but early 'pause is a hypo thing.

When you have your bloods done, ensure B12, D, iron ferritin and folate are all tested and that as well as TSH FreeT4 & Free T3 are also tested. You need to have your blood drawn as early in the day as possible and forego your thyroid medication until after the blood draw. If you fast after 10pm the night before, drinking only plain water until the blood is drawn, that will give a more accurate reading for your GP to ascertain your next steps. Ensure you get a copy of the results and post them here; many wise and generous people here to help you interpret what might be amiss.

Best to you, chelle - I know how tough this can be. You can feel better but it's sometimes a long haul. xx

• in reply toRapunzel9 years ago

Thank you..I had a full hysterectomy in 2004, so would have thought menopause would be ruled out by now..who knows..I will definitely post my next set of results..

Best wishes to you too Rapunzel and thank you for replying.

9 years ago

Hello RFU, sure I know you from somewhere else.. It could well be, runs in my family, guess I will find out next week..

9 years ago

No I don't

Hillwoman9 years ago

Chelle, some of your symptoms could also be due to vitamin B12 deficiency. Have you had a blood test to check for this? Neurological symptoms of the sort you describe can occur even when people are well within the lab range, because the range is set to exclude the macrocytic anaemia that is end-stage B12 deficiency. The neurological problems develop long before the anaemia.

Rhsana9 years ago

I don't have any answers for you but I feel like I have pretty much bang on the same symptoms. I'm 34 so I don't think its early menopause but I am being treated for Estrogen Dominance and suspect I might have some reverse t3 issues. Hopefully your next blood tests can help shed some light. My doctor has had me have a full test for toxins and parasites, that might be worth checking as well. I'm still waiting for the results so will update when they come in. R x

• in reply toRhsana9 years ago

Please do update when you get your results, thank you for sharing, reassuring to know i'm not alone, not good that you have the same symptoms though..

Rhsana• in reply to9 years ago

I will, this site and all that has been shared has been my main source of support! Hope you feel better soon xx

loueldhen9 years ago

Changed your brand recently? Sounds to me like you are on too high a dose. Change of brand used to stop me sleeping when I was on T4.

• in reply toloueldhen9 years ago

Hi, no i've been on the same brand since I started taking Levothyroxine..

loueldhen• in reply to9 years ago

If you're not sleeping I would reduce my t4 or even stop taking it for a few days just to see what happens. When my body flips out I try to reduce all the bad stuff - just eat meat fish water veg rice then it gives your body a chance to heal itself. The last time I did this I got no improvement and so stopped taking my levo which was the only non natural thing i was ingesting. I felt improved within a day or two.