What happens when medication is stopped for hypothyroidism..

[Denne]

I was on 75mg for 4years before that 50mg hypo for about several years or more I forget now,I felt the same with tablets as I do without them now,it's been 3 days now,stopped them myself,conflicting advice of 2 doctors,one saying stop tablets the other said I will be ill ,effect s,ringing in ears,dizziness ,light hurting eyes,sickly ,aches,tired . One new symptom pins needles in my head,top mainly.

[susymac]

I agree with the one that said you will be ill!

Thyroxine replacement is for life. If you need it then you must replace it. To start off with you will have all sorts of weird symptoms, which (in my experience) then fade away as your body starts shutting down. Its usually a very slow process, but some of the damage that can be done is NOT reversible

[Moggie]

I just cant understand why you would want to stop your thyroid meds - have you got blood results that indicate you should? and why did a doctor say that you should. Do you have a bit more information to give us, like latest blood tests results.

Moggie x

[Denne in reply to Moggie]

Hi again,I rang for appointment at docs,can see him on the 16th of this month so I asked the receptionist for my last blood results,June this year they read TSH 1.76,T4 16.7, and 4.4 ,what does that mean,I feel dizzy,move my eyes to quick and that makes me feel sick it's like being drunk,mood swings ridiculous the list is endless,the symptom I was left with was extrem fatigue when I stopped them for three days 75mg levo,I want to try desiccated armour because I read it is natural ,I know he won't he even says I vaguely remember ,no endo would entertain me with results like that,meaning the ones I listed above,am confused as to what to say on this appointment .

[tegz in reply to Denne]

Is the 4.4 the T3 result? If so , it could be worse but TSH is still up.

Makes me think it could be something else running with your 'not optimal' thyroid treatment- both will need addressing, if so.

Keep on a T4 with Docs support as you've been on some time. It may be you are getting resistance to it -but without a RT3 test hard to tell.

An endo would need to get that approved in NHS.

I would push for that route [or go private] but note, GPs don't like us knowing too much- and it can rankle if you get ahead of the game.

Push on, though. It's your body!

[Denne in reply to tegz]

It must be coz she said the other results TSH and t4 but she didn't know what the 4.4 was,I'm assuming its the t3 coz I had to go on and on to get the three tests done,are they in range

[tegz in reply to Denne]

Hard to say where you are on this, as you've stopped taking T4.

The T3 is tricky as there's Total, Free & Reverse T3.

Try to clarify what the 4.4 was and get ranges.

The most that can be said is that TSH should have been lower [say,in the <1 direction] for you to feel well, on what's discussed here generally-but needs more T4 to get it down, probably..

They're all 'in range' but that means too little with the NHS style of managing thyroid treatment.

I really don't know what their guideline TSH lower target is for those receiving T4 &/or T3 hormones.

[whackythyroid]

Hi There, Are you wanting to change over from t4 only to T3 or NDT? Are you coming off the meds under a doctors supervision? Has the doctor giving you the advice to come off your meds told you why they think it's a good idea? Sorry for all the questions, I know you must be feeling terrible just now, but everyone on here are very helpful and knowledgable and will help you the best they can. I hope you find an alternative med to help you feel well, best wishes

[ThyroidHell]

Its a bit like a diabetic stopping insulin take..catastropy waiting to happen.

[Denne in reply to ThyroidHell]

I was told years ago I had a under active thyroid,take this medication .I never felt any different just got on with it. Am sick of been told am in guide lines for TSH .docs don't want to know,won't refer me to a endo,demanded t3-t4 they fine but at the time of blood test I had a bug and had been vomiting just hours before the blood test so had no meds in me for about two days because I vomited them straight back,when the results came back they were all in range,I am sick of feeling ill especially the dizzy drunken head which has been put down to vertigo can you believe it,3days with out meds this is just about gone,feel tired a lot though. I just don't have any faith in the medical perfection any more,so decided to sort myself,all advice great fully accepted

[helvella Administrator in reply to Denne]

We have seen a number of people who stopped taking their levothyroxine.

In general, whatever they feel in the first few days (better or worse), after a bit longer they start to deteriorate.

It is not impossible for someone to "recover" and no longer need thyroid hormone supplementation, but that is the exception.

I have every sympathy with your lack of adequate treatment but I struggle to believe that your current path is in your best interests. I wish I had some good ideas for you.

Rod

[Denne in reply to helvella]

What do you mean,what will happen to me,

[helvella Administrator in reply to Denne]

It could be that you will suffer from symptoms of hypothyroidism and that they will get worse and worse.

The main Thyroid UK site has a list of hypothyroid symptoms here:

thyroiduk.org.uk/tuk/about_...

Rod

[Itsjakefromstatefarm in reply to Denne]

I will tell you what will happen to you...I am @almost 100 I was @ 78 last week...you will live in a hell you don't ever want to experience...I had a TT over three weeks ago they found cancer so they will not allow you to have any thyroid hormone ...it is like a nightmare...I used to think I felt bad @7.7... I can no longer drive or stand very long...my vision is blurry...I constantly cry and have nightmares...but the worse part..is feeling like I am in quick sand...I am slowly dyeing...i would call my doctor ans cry ans beg him to hurry...I almost just said no to RAI...I am so out of breath I feel like I could go to sleep ans not wake up...it's so scary...don't ever stop taking your meds...

[Heloise in reply to Denne]

Denne, When you started on Levo, it began building up in your system and it probably took two to three weeks to hold a stable level at all times. Now you are doing that in reverse. In two to three weeks, you will have depleted the levo and feel the full effect of your hypo if you truly ARE hypothyroid.

Sometimes people do not do well on levo and do better on NDT or T3 or a combination and perhaps that what should have been recommended to you before. I hope you will have some testing done soon and if you need to change the type of hormone you take, you can do so.

[Zoobidge in reply to Denne]

I am tired of it too, I have all those symptoms. Feel pretty ill most of the time. Am on t4 175mg & t3 20mg...I have no thyroid it was removed in march this year due to cancer. Help. !!!!

[LukeF in reply to Zoobidge]

T4 to t3 should be 4:1 ratio or less. I would lower the T4 and increase t3 esp as women struggle more than men to convert it in the liver, thanks to estrogen. Remember to spread t3 usage throught the day as normal thyroid output is 4-6mg per hour

[tegz]

Look at it this way- your body has got used to added hormone and assuming you react to the stopping, your pituitary needs time to raise TSH and, IF there's any thyroid function, for that to build back up some kind of internal supply..

I'm not a medic- but have often eased on and off meds to stop probs. and hormones are not things to mess with.

Why not get thyroid tests done to cover your change of approach and consider a slower tail off -with GPs backup?

If you have a bad reaction it will be easier get a fix then.

PS: If you just can't get GP on board- then consider private blood tests.

[Denne in reply to tegz]

Thx for your help Will see doc,must go to sleep now need to be up for child for school

[Clarebear]

All of those symptoms sound like hypo to me. I had terrible tingling in my head before diagnosis. Along with vertigo, dizziness, tinnitus, anxiety etc etc. thyroxine did nog help me but NDT really has ANC I'm now feeling great. I suspect you need some T3. Either synthetic of in NDT xx

[Denne in reply to Clarebear]

What is NDT,I took meds last night after 3days of them,I got up this morning with the horrible foggy drunken head again,slept to late child late for school,it was lovely to have a clear head,no ringing In ears even could see clearly,no misty vision BUT..was that exhausted couldn't function ..going to try with doc again but I don't know what,did ask him a while ago if I could try desiccated armour ,he said leave it with me he would have a read up and see if it was safe for me to take,I can't even stomach a tramadol pain killer will vomit it back within 20 mins not even a bit of cream on my face,I come out in a rash,lousy been this sensitive ,many many thanks to you all it so helps to know people like yourself s XXXX

[tegz in reply to Denne]

NDT - Natural dessicated thyroid, of animal origin and Armour is the popular one! So you are on track with GP- who IS listening

It's not a surefire cure , but does the trick for many on here- I think because it has a full spectrum of thyroid hormones!

[Sometimes in association with synthetics]

[Clarebear in reply to Denne]

NDT is natural dedicated thyroid such as Armour thyroid. It's made from dried pigs thyroid glands. My GP is prescribing it for me, but most GPs won't prescribe it unfortunately. Xx

[deb25426]

I think without you doctors say so don't stop taking it... You may become very poorly! The symptoms you describe are like the symptoms of hypo! Xxxx please take care.. Xx

[Redscorpian]

Hi all, I'm apparently totally dependant on levothyroxine to survive as my thyroid was diagnosed as not functioning at all (over 5 years ago) but stopped taking this early in September due to a number of issues. I haven't restarted and my blood test results show very low levels of thyroxin which is obviously to be expected. I take various vitamin tablets and after at least 12 weeks like this I don't feel too bad. It's hard to say if I'm actually feeling ill as a result as I don't and I'm aware of the dangers of this. I am regularly exercising and feeling no ill effects that I haven't experienced as 'normal'. I guess this won't last but at least it shows how we can survive for extended periods without serious concern. I was told that the 12 week barrier was the time it takes for the body to be depleted of thyroxin after regular medication is stopped.

[Samcozza]

I had my thyroid out in march of this year I went from 135 pounds to 183 wow idk what to do talk to my doc and I don't think they understand what going on blood work keep doing blood work for what nothing changes

[Marie1940]

I like to be informed about all health matters