Stories/experiences of those who stopped taking thyroid treatment

[mattioso]

Hello all!

The topic I wanted to discuss with people today, as you can tell, is ways in which people attempted to come off thyroid treatment and how it went for them. I know this isn't the most popular of topics on the forum (lifelong condition etc), but as we all know everyone is different and in a completely different set of circumstances.

To cut my long story short after complaining I was feeling lethargic and tired all the time, I was diagnosed Sept 2014 as "slightly hypo" by a GP and started on 50mcg Levo. This was fine for a long while, but eventually the symptoms would come back worse than ever. 50 led to 100, which led to 125, I was "right" on the blood test results, but my symptoms had never been worse, leading to me dropping out of University.

I eventually had to splash the student loan on a trip to Dr Peatfield at the opposite end of the country at the beginning of this month, who believes I was completely misdiagnosed, things didn't add up and not enough investigation was done by the GP's. My antibodies were fine (Hashi's negative), I was diagnosed a fit, young 19 year old male. However, Dr P believes that my thyroid may have dipped in levels at the time of diagnosis as I'd just had a severe sporting injury and had been on crutches for a long while, not really doing a lot.

I sit here having fully weaned off Levothyroxine for the last two weeks, and can say I am feeling slightly better for it. I'm being extremely cautious, and am only coming off the treatment in order to run more tests completely synthetic thyroid free. The only change I've seen within myself is regaining the ability to think sharply and function cognitively. I had no idea how ruined my brain had become until I'd gone through this change in the last few days, how I was attempting to sit University exams in that state of mine I've no idea.

So that's my story, I'd love to hear if anybody's been through anything similar in which they ended up off of thyroid treatment. I'd also love to hear about supplements and lifestyle changes people have made. I've been taking a few mood boosters, vitamins and iodine, nothing that will drastically affect this 'trial period'. I'm also looking at the idea of a 'thyroid detox' (still investigating the legitimacy), above all I'm trying to look after my diet and run every day. I figured the best thing to do right now is attempt to return to who I was pre-diagnosis.

Thanks for reading 

Matt

[Marz]

When people come onto the forum with borderline results - it is very often suggested that other tests are done.  FERRITIN - FOLAT E - B12 - VitD - all these need to be optimal for even a healthy thyroid to work well.  So the symptoms of LOW B12 can mimic being Hypo - could that have been the case with you ?

[mattioso in reply to Marz]

Hi Marz!

Neither of these were done at the time, however I had them done at some point between then and now, nothing other than TSH or T4 has ever come back off

[Jazzw]

Marz makes a great point. The other thing that commonly happens when folk come off thyroid meds is that they temporarily feel loads better - then crash horrifically and feel awful for quite a while until they get their meds right again. Hope that doesn't happen to you but we've seen it here time after time.

I suspect it's because the thyroid bounces back after being "replaced" by medication initially quite well, but soon gets tired and slows right down again.

Do you have your blood results from when you were diagnosed? It might be worth getting hold of them. "Slightly" hypothyroid (not a real thing in my book - it's akin to being "slightly pregnant" ) might mean a TSH of 3.0 or a TSH of 10, depending on the doctor. 10 is far more significant than 3.

[mattioso in reply to Jazzw]

Hi Jazzw!

I'm unsure biologically what's going to happen right now, whether or not my thyroid will bounce back, it's been two weeks since I've been completely off, 4 since I've been reducing, I'd say it's too early to tell symptomaticly 

I'm working on getting copies of all my blood work since the diagnoses. The only problem is I don't know what I was taking at the time! We'll have to wait and see

The way Dr P explained thyroid function was not as you do with the pregnancy comparison. I went from an extremely healthy life (full time sports coaching, on my feet 14 hours a day) to sat down all day every day eating junk food. Dr P believes that definitely will have caused a shock to my thyroid and led to the misdiagnosis. Although most of the explanations I see on this website are contrary to that! 

[Chris1961 in reply to Jazzw]

God this is so true !! I had radio iodine for graves in 2012, thought was over medicating and stopped my Levo ... How stupid I was !!! ... 3 days later I couldn't breath ... Take me while get back on track but will never be so stupid again !!! 

[Joyia]

Interesting, one thing comes to my mind;  I have a very active grandson of similar age and I strongly suspect he is an adrenaline junkie, sorry for the expression but cannot think of another one and it is a genuine condition.  It is good to play sports and lead an active life but this can be overdone eventually leading to adrenal exhaustion, which in turn can affect the thyroid.   It may be worth checking out Marek Doyle's website he is an expert on sport and adrenal exhaustion.  

[mattioso in reply to Joyia]

Hi Joyia!

Very interesting what you've said, and sounds as though its something worth looking at! My doctor does want to test my adrenals, something no GP has ever mentioned to me. I'll let you know what happens 

I'll have a look at that website now, thank you! 

[Marz in reply to mattioso]

drrind.com/therapies/metabo...

Unfortunately it will probably be the one off early morning blood test that will be performed by your GP.  From reading the experiences of others I would suggest the 24 hour saliva test - which has to be done privately I believe.

The above link is an interesting website and may be of help.  There is a questionnaire - Adrenals v Thyroid ....

[Joyia in reply to mattioso]

I agree with Marz adrenal testing on the NHS is in many peoples opinion not reliable but Marek Doyle would encourage saliva testing believed to be more accurate.  I hope you find his website encouraging. 

[SilverAvocado]

Mattioso, I recently spent a 3 week period with no thyroid medication, and also felt no worse and in some ways better - particularly reduced brain fog. 

But it's definitely not the case that I could manage without, as I have had a TT! Asking around on the forum I heard that its quite common to feel a lot better when going completely off medication, and its not really an indicator of anything in particular. Which I was disappointed about, as I thought it might be a clue that I had been over medicated before. It's always good to pick up more clues

Another thing I was told by a family member who is a pharmacologist is that their rule of thumb for a medication having cleared the body is ten half lives. So if you assume the half life of Levo is 6 days, you won't actually be fully clear for 60 days. So in your case if I'm understanding you correctly you've got about 6 more weeks to wait to actually have no medication in your body. 

At the moment you've gone 2 half lives, so you'll have the equivalent of a quarter of your dose, or about 31mcg if you'd gone straight down from the 125mcg. 

I tend to believe Dr P, too, though, and if you're able to go for regular runs, etc, you're doing a lot better than many of us, here! I'm just a big advocate for taking things very slowly and erring on the side of giving things a long time to work before drawing conclusions. Before I got ill I was also quite a big exerciser. Its interesting that another commenter raises the issue that being very into exercise can be linked to metabolism problems. My mother, who reads an awful lot of functional medicine stuff and tends to be extremely good with this stuff, found a snippet years ago saying that people who are slightly hypo are attracted to exercise because it has a large effect on making us feel less tired. But I never did find out where that came from.