Hello All, just looking for some help.

[tom210]

I was diagnosed with hypothyroid and have been on Levothyroxine [100mg] for six months now and to be honest with you I think I feel worse now than I did before I started taking Levothyroxine. [wild mood swings, exhaustion, palpitations, losing voice, in regards to losing voice hoarseness the doctor has prescribed me Gaviscon but I told him I don't have acid re flux at least I don't feel like i have but he said that's all he could offer me. In desperation I am considering stopping taking Levothyroxine to see what life is/was like without it, because right now I feel it can't have been as bad as this. I would like to know:

Has anyone tried this and what were the results? 

How long it takes for Levothyroxine to leave the body? 

What are the risks of stopping Levothyroxine?

I am aware that my memory could be being selective here and I am forgetting how bad I felt before and the reasons I went to the doctor in the first place but I have to know in my mind how I function without Levothyroxine. I have read reports regarding taking Levothyroxine in that when you take it the Levothyroxine does the job of the thyroid thus hastening the decline of the thyroid and that not taking Levothyroxine makes the thyroid work does anyone know if this is true. Thanks for reading this

[Hidden]

tom210 - it would be really helpful if you could write a brief summary in your profile but looking back at your posts your thyroxine has been increased.  Were you able to get your GP to agree to any other tests?  Have you changed anything or supplementing anything?  Antibodies?

As regards acid reflex that will be due to low stomach acid (typical hypo symptom) so Gaviscon won't help.  Apple cider vinegar is favoured by many on here.

You mustn't stop thyroxine, it's for life.

[Treepie]

Have you had ferritin,folate,D3,iron,B12 tested?

you are 2-4 weeks off more blood tests and may need an increase to bring your TSH to 1 or below.Beware of GP saying as you are in range you need no more.

My voice was very hoarse before i was treated with levo.I was over a year before i was much better but stillhave some symptoms .There is no quick fix.

Perhaps what you read depends on the type of hypothyroidism you have I do not know .Generally speaking not taking it is a very bad idea. 

There is of course the option of self treating with NDT or adding T3  but most do ok on T4.

[Ruthi]

Hindsight is wonderful, but it would be really useful if we all recorded how we felt before it all started. All I know is that I was sleeping for 13 hours a day!

If you have autoimmune thyroid disease (Hashimoto's) which is confirmed by a blood test for antibodies, then the levo will actually slow the progress of the disease, evening out the highs and lows. Roughly 90% of patients do. If you are in the minority and your thyroid is packing up for other reasons then stopping will do no harm, other than, probably, making you feel even worse!

I took levo for six months in ever increasing doses but felt no different. At the time my T3 wasn't being tested so I didn't know that I seem unable to convert levo to T3. I had a trial of T3 and finally settled on NDT which works for me. If you can persuade your doctor to test free T3 and reverse T3 you would have a better picture of what is going on.

[TupennyRush]

Hi there

You haven't said how long you were ill prior to diagnosis; I was ill for around 7 years prior to diagnosis and I estimate it took about 2 years before I returned to fully being me. The first year I got steady relief of symptoms, I changed meds then and the next 6-8 months got rid of my remaining symptoms. However my personality hadn't fully come back; I knew I was back to being me when my husband said 'I thought that you'd matured over the past few years and had become less Bolshie as you grew up but I now realise that you were just too ill to be Bolshie as you're back to being a nightmare. I'm not sure it's a good thing'

From your post it looks like you've only been taking it for a few months and have possibly been ramping up the dose during that time? Please don't stop taking the levo but look at getting tested for vit/min deficiencies (others can advise on this better than me). It may also be that you're one of the 15% or so of the hypo community that doesn't get full symptom relief from levo. I am one of this minority but I did feel better on levo; I just didn't feel well. I'd suggest continuing with levo for a year, possibly keep a diary of symptoms and then review at that point to see whether you still feel not fully well. Alternatively you can take a dna test (available on Thyroid UK website) that will cost but will show if you have the DI02 gene issue that means you need T3/NDT meds rather than levo.

Good luck!