Stopped taking my medication... cold turkey...

[Jlee69]

I have been taking 100mcg levothyroxine for a year.. I have had few good days as tho I was becoming me again.. just never really got there.. I decided to stop taking my pill and I’m going on my 3 weeks.. so far I’m ok. (I hope) I’m not as sluggish / beat or struggling to stay focused / awake.. I typically work out, a lot of cardio and eat pretty decent. No fast food or sugars. I was not over weight or had any prior health concerns so this was a surprise.. I started to struggle with keeping my weight down and found in the past few years or so it was simple to put weight on and fast! But bcz of my workouts I was pretty much fighting to maintain without realizing I had this hypothyroid deal causing me to work harder ... as the doctor tells me I have had all the symptoms and I should be heavier then I am.. this thyroid problem took me out a little over a year ago that I was not able to do anything without falling asleep and I was extremely dehydrated... just so weird... so this is how I found out.. the palpitations / anxiety that kicked in seems to be back now.. but there does seem to be a relief within me and not so stuffy.. The bags under my eyes appear to be better and I’m not as swollen... Any feedback from anyone who has done this and for how long. Your experience / advice would be greatly appreciated. I’m 49 years old. Thank you.

[ava19]

Hi Jlee69, do you find that you feel better without it?

[shaws Administrator]

Once officially diagnosed as hypothyroid, it is a serious life-long condition with the most serious consequence is that we will go into a coma. That's why, in the UK, we no longer pay for any other prescription for any other condition.

If you've not had a recent blood test, request one and it should be at the earliest and don't eat before it. If you were taking thyroid hormones you'd take them after the test and not before.

Your GP will probably not do the following but ask anyway. We have two private labs that will do postal tests and all the ones that are necessary. Make make sure you are well hydrated a couple of days before so that blood draw is easy. The labs can also make an arrangement or your surgery may draw blood for you.

You need TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.

GP should test B12, Vit D, iron, ferritin and folate.

Put your results on a new post for comments. Below is info for private labs.

thyroiduk.org.uk/tuk/testin...

Medichecks or Blue Horizon.

[SlowDragon Administrator]

You will need bloods retested at 6 weeks, or earlier if you suddenly feel a lot worse.

Essential to test vitamin D, folate, ferritin and B12 too. These are likely to lower significantly the longer you are off Levothyroxine

Blood test should be as early as possible in morning

[Jlee69 in reply to SlowDragon]

I do get tested every 4 to 6 weeks and the most recent test show now that I am low on vitamin d which could explain why I’m always tired according to the doctor .. they have me taking 50,000 unit of vitamin d, 1 pill a week for 12 weeks. It’s been 6 weeks today that I take the vitamin d.

I have done a lot of reading and inquiring before just stopping my medication. I didn’t just wake up and decide not to take it. My doctor is fully aware of how I feel. I also have a specialist who I have have seen. She is pretty old school in her ideas..

There are different medications I can take that are more natural and there is no problem with switching medication.. Im aware of this. I am not a fan of taking pills unless I am on my death bed... so this is a mission for me to be able to balance my self / body / mind the best way that I can naturally through food, rest, supplements and excercise. My goal obviously is to not take any medication. I honestly feel this is just the gateway now to having other problems.

My blood pressure is higher now that I have taken this medication..I monitor my heart daily and have prior to taking this so I know my hearts beats. The highs and lows...being on this medication has increased my beats and this is uncomfortable for me mentally due to the high instensity cardio I enjoy and worked hard through the years to get here. This was a bit of a set back for me! I’m back up and running if not stronger then before this happen!! But I feel the swelling, I can see the bloat in my cheeks, the weight... nothing in the year of taking this medication has balanced or gotten better.. not sure how this pill has been my friend more like my enemy.

I do understand the concern. I appreciate the comments/ advice.

Thank you.

[SlowDragon Administrator in reply to Jlee69]

If you have Hashimoto's (high TPO and/or TG thyroid antibodies) then strictly gluten free diet likely to help

Your vitamin D may be low because you have stopped your Thyroid medication

Important to test folate, ferritin and B12 as well. If these are dropping too they will need supplementing

I stopped my Levothyroxine 20 years ago, after just 10 days I was so ill they thought it was brain tumour. Took a very very long time to recover. But apparently my extremely severe reaction is unusual

[Jlee69 in reply to SlowDragon]

Thank you for sharing. My vitamin D was low before stopping. I’m 2weeks/14 days off now. Going on my 3rd week.

Thank you.

[xdianex]

I have stopped taking my medication before..... felt great for a month or so then felt absolutely terrible 🙁

[Jlee69]

Hi. Thank you for sharing. My question for you. During the month you were off did you change or add anything to your diet, lifestyle etc... did you notice gradual changes before feeling so terrible? Thanks again.

[SlowDragon Administrator in reply to Jlee69]

I felt much better for a week or so, (it's a known phenomenon after you stop Levothyroxine) then terrible crash.

[xdianex in reply to Jlee69]

At first it was great, ate more healthy seemed to have more energy so became more energetic. But then I just started to feel really tired and fatigued palpitations started and I just felt really bad in general..... had my bloods done and levels were all over the place. It took a good few months to start feeling “ normal “ again back on levothyroxine. Not that I ever really feel normal haha. I can understand where you’re coming from though and would just say use caution 🙂

[jenniferarchiba]

I quit Levothyroxine a year and a half ago. I felt pretty good up until a few months ago when I got the flu. Currently all my hypothyroidism symptoms are returning and I am seriously considering giving Levo another shot because I am so tired and my belly is swollen again. Been trying to get myself back on track with no success. Make sure you are gluten free and having blood work done so you can be sure you're not hurting yourself. So, it can be done, but getting sick can ruin everything.