Feeling scared and alone - Levothyroxine ruining my life.
Posted , 20 users are following.
I'm writing this in a desperate way, and any advice could honestly make me feel less alone with this horrible situation 
.
I'll try not to ramble too much.
Basically I have been diagnosed with hypothyroidism and for the past year my struggle has been with levothyroxine.
They started me off on 25mg a day and this caused me to have major episodes of palpitations with an accelerated heart rate.
So they lowered my dosage to 12.5mg a day and the palpitations stopped but I have other side effects that are ruining my life.
It might sound dramatic, but it has made me feel so jittery, nervous and anxious that the past week I've just come home crying every day with bouts of panic attack.
I suffer from anxiety, and get awful physical symptoms such as tingling and numbness on my face (this has been classed as anxiety, clear MRI, etc) and only appears when I feel really anxious.
Since taking the levo regularly, these symptoms have come back full force and I'm finding it unbearable. I also get prickly heat feeling in my head and body, feeling very warm.
I am completely on my last legs with this medication and I just don't know what to do. My DR doesn't seem to know much about hypothyroidism, and living in Scotland in the Highlands there aren't really many specialists I can find.
I'm considering stopping taking the levo because I'm actually starting to have no quality of life with these side effects.
I don't know of any alternatives? Or if the side effects will disappear once I get used to the levothyroxine?
Please, please, please any advice or help I would be super appreciative.
I really feel I can't go on like this.
Thank you.
4 likes, 37 replies
eileen33929 heather2905
Posted
I have been on Levothroxine and hate it for many of the reason you describe. However, thyroid health is critical to overall health. Like others here, I started taking it before I go to bed, several hous after having eaten. That has helped. I also take a high dose B 12 supplement. Please be well.
barb72001 heather2905
Posted
Heather,
I just signed up on the site and noticed you made this post two years ago, so you may have already found a solution to your problem. If not, I have had a lot of problems from Synthroid so now I take something called Nature-Throid and I am doing much better . It's a bio identical form of Synthroid. Hope this helps.
barbara98940 barb72001
Posted
Hi Barb, I think you'll find that synthroid is synthetic T4, whilst Nature-Throid is a natural desiccated thyroid (NDT) made from ground up pigs thyroid aka as porcine NDT (one can get bovine NDT as well). NDT contains all the hormones human thyroids produce i.e. T4, T3, T2, T1 and calcitonin. If one is prescribed synthroid, one's body is expected to convert the T4 to T3 (which is the form our bodies actually use). Some people's bodies don't do this T4 to T3 conversion very well. My understanding is that it is these people that benefit from being treated with NDT. So, if you don't feel well when you are on a stable dose of synthroid with 'in range' blood test results, NDT is worth a try. You may need to try several NDTs before you find one that is OK for you. I swelled up on both Nature-Throid and WP- Thyroid (both porcine) and ended up on a bovine NDT called ThyroGold. Hope this clarifies a few things
andrew27435 heather2905
Posted
barbara98940 andrew27435
Posted
Andrew, in my experience, the most likely cause of anxiety from thyroid meds is either: being on too high a dose, or increasing the dose too quickly. For someone like yourself who has just started on levothyroxine it is likely to be because you started on too high a dose. If I had my time again, I would do what is advised for someone 50+, or with heart problems, and that is start on a low dose (25mcg) and build up slowly (increase by 25mcg every two weeks). This gives your tissues chance to adapt and absorb the levothyroxine. I got to the point where I disliked the effects of increasing or decreasing a dose so much that I used to do it by 6.25mcg at a time every 2-3 days (i.e. a quarter of a 25mcg tablet). It is OK to cut the tablets up.
Do you know to take levothyroxine first thing in the morning on an empty stomach and wait an hour before eating? Also avoid medications with iron or calcium in for 4 hours. Both iron and calcium affect the absorption of levothyroxine. These points are in the Patient Information Leaflet. Another thing that is in the PIL, Most people don't realise the significance of the following in the PIL in the section 'do not take if'...
'you have any condition that affects your adrenal glands (your doctor will be able to advise you if you are not sure)'.
If you have an adrenal gland condition this has to be fixed first before you start levothyroxine. So look up the symptoms of Cushing's disease and Addison's disease (both adrenal gland conditions) and check you haven't got either of them. Then ask your GP.
You may have noticed that I have used the past tense, that's because after 25 years I switched away from levothyroxine to a bovine natural desiccated thyroid. However I still increase or decrease my dose by small increments at a time.
andrew27435 barbara98940
Posted
barbara98940 andrew27435
Posted
You're welcome. Do go back and update your doctor (I'm assuming it's your GP) with what's going on. Say you were getting xyz symptoms and so you've decreased your dose and plan to increase it slowly to the level suggested. Any questions just ask and I'll do my best to answer them. Note, I'm not a doctor, just someone who has had hypothyroidism for 28 years.