Worried, scared and feeling alone. Seeking advi... - Thyroid UK

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Worried, scared and feeling alone. Seeking advice on hypothyroidism and levothyroxine.

Pinkmoon26 profile image
8 Replies

I'm new to this forum - hello! :). I'm having a very difficult and scary time with my recent (a couple months) diagnoses of hypothyroidism. I have all the symptoms of hypothyroidism and got my levels checked. I also have antibodies appearing so it seems likely I have hashitimos also.

My Dr prescribed me 15mg of levothyroxine per day. However, literally everytime I take them - once I have a few in my system - every evening and ESPECIALLY when lying down in bed - I get very alarming heart symptoms. It feels like my heart is fluttering and palpitating over and over again and my heart feels like it's thumping really fast. I googled this and apparently this can happen with the drug I'm on. If I knew this was nothing to worry about I would continue on the drug. But I have done some reading and apparently consistent heart fluttering can cause blood clots and all sorts! Even strokes. And now I have got myself in SUCH a stressed state of mind. I went back to my drs and she said my levels have increased and looking good. I told her about the palpitations and she said this happens with being hypo - she did an ECG but it was in the morning when I wasn't even getting any. So she said to keep taking the meds. I know it's not from being hypo because when I stop the meds the fluttering stops. I also get the symptom of being Extrmelely hot and feeling jittery and anxious. I honestly would prefer not taking anything and having the hypo symptoms rather than the meds side effects. I have currently stopped taking the meds and have a dr's appointment to discuss alternatives. I don't trust doctors and feel they don't believe me half the time. I don't know if not taking meds is just as dangerous for my heart as taking them. And I just feel completely freaked out and alone in this situation. If anyone has any advice or has had similar problems please please reply I would appreciate it so so much! Thank you in advance :) xxxx

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8 Replies
humanbean profile image
humanbean

Can you double check the amount of levo you are taking please. It can't be 15mg, it is more likely to be either 25mcg or 50mcg.

Pinkmoon26 profile image
Pinkmoon26 in reply tohumanbean

Yes it's 25 sorry - typo :)

Jake123- profile image
Jake123-

Hi I know how it feels I had heart palp bad like my inner body was shakin but turned out my levels were on hyper I have graves but no thyroid it's awful feeling hope u get better soon x

Clutter profile image
Clutter

Pinkmoon, welcome to the forum.

Can you post your recent thryoid results with the lab ref ranges (the figures in brackets after your results) as it will help us to see whether you are over or undermedicated.

Palpitations can occur when hypo and hyper, it needs spot on dosing for some to prevent it and some patients are very sensitive to Levothyroxine. Try halving the dose for a couple of weeks to see whether the fluttering reduces. It may be that you need to build up a tolerance to it.

Pinkmoon26 profile image
Pinkmoon26 in reply toClutter

I will ask my dr for my results as I don't know them at the moment sorry! I'm actually really scared to start taking the tablets again even halved incase it does damage to my heart :( do you think this is possible?

Clutter profile image
Clutter in reply toPinkmoon26

Pinkmoon, untreated hypothyroidism caused by not taking the tablets is far more likely to damage your heart. Palpitations, although alarming and uncomfortable are rarely damaging. I do understand relucatance to take medication which makes one feel worse but sometimes it takes a week or two to acclimate to medication and the unpleasant symptoms subside and that's why I suggested you try a half dose for a couple of weeks to build tolerance.

Sometimes it is the fillers in the tablets which cause problems so ask your pharmacist to dispense an alternative brand to that you are currently taking. There are 2 makes available in 25mcg, Mercury Pharma and Wockhardt. Wockhardt has less fillers than Mercury Pharma.

When I started on levo I was incredibly sensitive to it and dropped my dose to 12.5mcgs as it was all I could tolerate. Yes it can affect your heart a little because the LEVO is stimulating your system and metabolism. I stuck with that low dosage for a couple of weeks until I felt ready to raise to 25mcgs. I am currently taking 75mcgs and never thought I'd see the day because I am so sensitive and I would get crazy heart beats etc. Very often when starting levo you can feel much worse and find yourself with symptoms that you didn't have before but you just have to ride it. I still have most of my symptoms and my heart is in a skip-every-three-beats at the moment as I've just raised. But I know it's totally benign and will ease off as I start to get used to this dosage.

I got great advice hear from Clutter and raised very slowly. I built a tolerance to each new raise never raising more than 12.5mcgs at a time and often raising every other day. It is the only way for me.

You'll get great support here.x

Jodypody profile image
Jodypody

Having a heartbeat that's fast or an ectopic missed heartbeat is what I experienced when undermedicated. The ectopic before I started thyroxine and palps and hearing my heartbeat in my ear when I lay down when I dropped my dose to switch to Armour. Yes, there's a chance it's the thyroxine but it's more likely its your hypo symptoms. It will disappear if that's the case when you're on the right dose. As clutter said, don't panic as they're harmless. I used to have 10/20 panic attacks a year. Unless you're extremely frail you'll be fine.

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