Could I stop my medication?: I have been on... - Thyroid UK

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Could I stop my medication?

ukap profile image
ukap
8 Replies

I have been on thyroid medication since 2013. My Dr. gave me a "trial" of armour 30mg based on symptoms (no bloodwork for trial) At this time I also started menopause & was juggling with HRT dosage too. I have stayed on armour with various doses currently 60mg. I always used Armour - have never tried levothyroxine by itself. Self medicated in the past when I had no medical insurance. Moved a couple of times & now have new Dr. who refilled my prescription this time but wants my TSH to not be suppressed so we are monitoring closely.

Looking back I wonder if I was too hasty in starting thyroid medication at all. Regular blood tests since 2013 show suppressed TSH. I have no antibodies. T3 and T4 are normal, maybe slightly on the low side. Looking at annual blood work 15 years ago when I felt fantastic & healthy my T3 & T4 have always been on the lowish side so this appears to be my base.

Have I made myself hypothyroid because I took medication & the meds have taken over the job my thyroid could have done on its own?

I would like to stop. The medication doesn't make me feel bad but doesn't make me feel great either. It always needs adjusting. In fact this past week I have not taken my Armour to see how I would do. It has been OK but today - day 7 of withdrawal - I feel fatigued.

If I keep going without will I go through a rough patch and come out feeling better when my own thyroid kicks in?

Anyone else tried this so I know what to expect. It is bearable as long as I know it will be temporary. Under lockdown for a while longer so now is as good a time as any to test this out.

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humanbean profile image
humanbean

My Dr. gave me a "trial" of armour 30mg

I have stayed on armour with various doses currently 60mg

According to this link :

stopthethyroidmadness.com/a...

One grain of Armour is 60 mg and contains .038 mg (or 38 mcg) of T4 and 9 mcg of T3.

If T3 is 3 times as potent as T4 then 1 grain of Armour is equivalent to a dose of

38 + (9 x 3) = 65mcg T4 / Levo.

If T3 is 4 times as potent as T4 then 1 grain of Armour is equivalent to a dose of

38 + (9 x 4) = 74mcg T4 / Levo.

Neither of these doses is a full replacement dose for the normal output of a healthy thyroid.

It is common for people to find it hard to tolerate thyroid hormones of any kind if they have been unmedicated or under-medicated for a long time, as you have.

You are more likely to have low levels of stomach acid, causing all sorts of gut problems, leading to low levels of nutrients, and low nutrients leads to poor tolerance levels for thyroid hormones.

Another problem is that being unmedicated or under-medicated puts stress on the adrenal glands and can raise cortisol. High cortisol lowers TSH. Also high cortisol makes it harder to tolerate thyroid hormones.

If cortisol is high for a long time it can eventually lead to the body struggling to produce what is required to keep the patient going, so cortisol may start high but eventually end up being low.

Looking back I wonder if I was too hasty in starting thyroid medication at all.

We would need to have information on what your blood test results actually were at the time you were first prescribed thyroid hormones, and what they were just before you decided to stop taking Armour.

Please note that high TSH may well be a feature of primary hypothyroidism. But if TSH is in "normal" range or is low, then it can still indicate a problem of secondary / tertiary / central hypothyroidism which needs to be treated with thyroid hormones just like primary hypothyroidism does - but secondary / tertiary / central hypothyroidism cannot be monitored using TSH they must be monitored using the Free T4 and Free T3.

jamesal0 profile image
jamesal0

You have about 5 days of thyroid floating round you system, so feeling fatigued day 7 would be pretty close. How's your temp. Should be around 36.5c if it's down in the 34-35s you are going hypo. I adjust my Armour constantly, anywhere from 60mg to 120mg mostly around how I feel and my temp and energy levels. If I take 120mg for 4-5 days straight I go hyper, and 60 will slowly make me hypo. But I cant just settle on 90mg - some days it's ok but often I get heart palps in bed and need a little more or feel cold.

It is not possible to know what your levels looked like back in 2013 since your doctor never requested labs. But a very low or even suppressed TSH is common when taking T3 (syntethic or NDT). So normalizing the TSH should NOT be the treatment goal when on anything containing T3.

If you were hypothyroid back in 2013, it´s likely your current dose is too low. A full replacement dose would replace what your own thyroid gland would normally produce; about 10 mcg of T3 and 100 mcg of T4 in a 24 h period. But many need more than that for complete symptom-relief.

The only way to know if you are under- or overmedicated and need a dose adjustment is to have your free T4 and free T3 measured. Especially the latter is important as it´s the active thyriod hormone. Once on medication, the TSH won´t tell you much and is not enough by itself to warrant going off medication.

You would also need to have thyroid antibodies tested.

I take it you´re in the US since you mention self-medicating before you had medical insurance? Is your doctor a "functional" or "alternative" doctor? I am asking becausem in my experience, it´s rare for doctors to 1. prescribe NDT and 2. prescribe thyroid meds without lab results showing an elevated TSH and below range FT4 levlels.

magsyh profile image
magsyh

I have come off my thyroid medication. I tried them all and never felt well. My GP told me to come off them and give it a try. I did feel awful for a while but like you I haven't got hashimotos. So what I did was I emailed a biochemist in Australia who told me that my medical history had iodine deficiency written all over it. So I have replaced my medication with 150mcg of potassium iodide and 90 mcg selenite. I tried this before and it didn't work but I have been told it must be sodium selenite and potassium iodide or it doesn't work. So far so good. I would say we are all hypothyroid for different reasons. I've tried fixing this for years with no success but I'm willing to try. I have also discovered a few things about thyroid medication as I have tried levo, NDT and T3. No one should be on thyroid medication if your cortisol levels are low and you must have adequate iodine. A lot of people are ill on thyroid medication because it boosts your metabolism. If you push your metabolism without cortisol you get yourself into trouble and you need iodine to do that. Iodine regulates your cortisol production. You can't loose weight without optimal iodine. The iodine in thyroid medication is not enough for your body to function well. My cortisol levels were normal until I started levo two years ago but my cortisol hit rock bottom. I'm hoping things get back to normal. I would say there may be a chance that iodine might work for you too. You just have to be careful and monitor your bloods. I had to start very low on iodide and selenite and work up slowly because just like with thyroid medication I got an adrenaline reaction.

RedApple profile image
RedAppleAdministrator in reply tomagsyh

magsyh, Did you get your iodine levels tested and confirmed deficient before you started this new way of medicating?

magsyh profile image
magsyh in reply toRedApple

No I haven't had a test yet but I know iodine has made a huge difference to me in the past. Even after a CT scan my thyroid worked wonderfully for a year. I don't eat fish or seafood. Hopefully I can get some kind of test soon but my GP refuses they are not interested. They wanted me off all thyroid meds but now refuse to check my bloods. They say I have to wait a few months.

tinkerbell22 profile image
tinkerbell22

Hiya, I have had times due to sensitivity to thyroid meds, vitamins sensitivity, or pandemic putting a stop to me accessing meds, and financial difficulties, where I had no choice but to come off a thyroid medicine for a period of time. I self treat too. This has been quite maddening in all honesty as I know I have needed the meds. And I know the risks of stopping thyroid meds if you need them, right down to risk of coma!! So I don't recommend stopping the meds if there is indeed a thyroid issue at the core of things. But this said you're not on a high dose whereas I have been at times. I just wanted to say I'm not advocating binning essential meds, if they are indeed essential.

But in those times without thyroid meds I can initially feel fantastic as I'm free of any side effects from the thyroid meds but thyroid hormones are still in my system. But gradually over time (I think 3 months is my maximum end point) I feel worse, and worse, and worse. Until I'm back to how I was originally, crawling around with no energy, cold and muscle pains etc. It's such a gradual shift that it's only when I've reached a certain point that I see how bad it has got without the meds.

I couldn't have done anything to avoid the several things that have led me to have withdrawal more than once. But the repeated experience has helped me find meds that suit me best and find ways to get them (not easy), to know which vitamins to avoid which trigger a problem etc.

I hope this helps in some way.

And yes I echo what someone else replied, t3 and t4 are much more important than TSH in checking how you are and how the meds are working for you.

tinkerbell22 profile image
tinkerbell22 in reply totinkerbell22

Oh something else, I have had blood tests during these breaks from thyroid meds and my TSH has sky rocketed and my t4 and t3 plummeted badly, Way beyond the original problem levels!!!! This has been really shocking. I guess the thyroid relies heavily on thryoid meds so when you take them away the thyroid struggles worse than it did before you started taking the thyroid meds in the first place.

Again not something I'd recommend anyone go through!!! Just sharing what unfortunate experiences I've had lol xx

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