To those who have ever come off meds for a while how long did it take you to crash. Anyone manage nearly a year?

[maplewood]

Just wondered how long anyone went before they had to re take T4 having come off for whatever reason? thanks

[Jaydee1507 Administrator]

It took me about 3 weeks and then I found it extremely difficult to restart Levo, was very ill indeed, cannot recommend it! Long story...

[tattybogle]

i stopped for 10 days once ... i was not intending to stay off for any longer than that ,... but even if i had been, i'm pretty sure i would have gone back on at that point .. crossing the road to go to the shop felt like pretty dangerous activity.,, and i wouldn't have trusted myself not to leave the hob on and burn the house down while i was out .

[Alanna012]

Doing this now. It's been a month.I've already sort of crashed, in that physical activity is extremely difficult (I could barely make it home after a quarter mile walk on Wednesday) and feeling low mood. Am in lots of pain as well.

A major crash is shortly to come. Not quite there yet though. I'm hanging onto next week or so. Hopefully. I'm experimenting.

Most I've ever managed is around 8 weeks. At that point I was having dizziness and mini blackouts and struggling to breathe, stand or walk. It then took ages to get anywhere near normal again.

I do not recommend it.

[tattybogle in reply to Alanna012]

Alanna012 ... no need to answer this if you don't want to Alanna (i do odd things too sometimes for reasons of my own , including stopping Levo , and i don't always want the world to know why , so i will understand it you ignore this reply ) .......... but why are you experimenting with going without thyroid hormone ?

.. i'm a bit worried about you . i noticed your post where you said you have been talked into doing 'graded exercise therapy too ? .....but you mention you 'crash and burn' which is a reason to be EXTREMELY wary about doing any sort of formal 'graded' exercise therapy.

And you have had positive TPOab that were apparently 10x over range .. so you have a DEFINITE diagnosis of autoimmune hypothyroidism ( whatever your doctor says )

The thought that you might be doing both these experiments at the same time..??? well my brain is screaming "Nooooo ! don't do that to yourself ".

[Alanna012 in reply to tattybogle]

Thanks for the concern Tatty🤗

I stopped because I'm having really bad angioedema and hives with severe breathing involvement. It's pretty much everyday and ironically initially during the beginning of this breakout last year, I must of had an accompanying surge in adrenaline or cortisol because initially it felt like all other long-term symptoms went into abeyance and my labs went quite high for brief few weeks. Once it settled I felt good other than the allergy symptoms. Energy returned. It was great other than the downer of the other nasty symptoms. But I thought hey I can live with increased energy.

That feel good feeling lasted for close to a couple months and then I was hit again with the familiar exhaustion in addition to all the other symptoms and suddenly my ndt dose (3 grains) gradually seemed to become less effective. I went up to four grains, which didn't make much difference (I tend to go by how I feel) then added in some levo and rallied a bit but then still felt under and my temperature dropped so I was absolutely freezing. I knew my batch was a working batch, so I initially put it down to the high dosage of antihistamines reducing the effectiveness of the meds.

At this point symptoms started getting worse the breathing difficulties, mouth and throat swelling started kicking in during any sustained exercise and getting up from bending to standing had me gasping for breath. Then I noticed as soon as I took my meds I'd get a slight worsening in symptoms

So during all this I was given 3 courses of high dose prednisone which did very little and I didn't bother taking more than a couple the third time. Then I turned to my half opened bottle of adrenal glandular and lo and behold it actually helped with the breathing and the hives much more effectively.

So I stopped and thought: what's the connection between symptoms appearing to worsen after thyroid meds and symptoms increasing with physical output?

I concluded that my cortisol levels must either be low or there's something else that means when there's a demand on my adrenals whether that's an uptick in metabolism after taking meds, or physical movement itself, my body cannot supply demand for what needs to be done, whilst simultaneously managing to dampen down the inflammation. (This was my theory and by then I think my thinking was somewhat compromised

I decided to let my metabolism slow down just so I could see what happens. And yes, the incidences of angioedema have decreased in severity (though still getting breakouts regularly), I've been able to reduce my antihistamines.

I surmised that my body can't cope with the demand of any T3 or T4 on top of what it's doing. (Possibly nonsense of course)

I had a plan of measuring my cortisol levels and comparing with old ones then trying to support my adrenals only. Only due to procrastinating, I haven't tested yet and neither have adrenals sups arrived.

So it's gone somewhat awry and I'm clinging on for dear life now with nothing.

After this long story I guess it boils down to I am just overwhelmed with dealing with my health. Even before this, I never achieved feeling 'well' (closest I got to it was Nature thyroid) so I settled for 'wellish'.

Now wellish doesn't seem possible, so in my (now no longer reliable) thinking, it doesn't seem to matter either way and I should use this time to see what else might work.

I also paradoxically do not want to do anything with my diet. I want to eat trash and keep warm by eating stodgy filling trash but I want to feel better. And also do nothing.

It makes sense somehow.

[Alanna012 in reply to Alanna012]

Sorry for the lack of punctuation.

[tattybogle in reply to Alanna012]

That's ok ...i can't do punctuation at this time of night either ... i'll read it in the the morning xxx

[Alanna012 in reply to Alanna012]

I should add that I am supposed to be seeing a consultant next week.

And yes my GP thought graded exercise would help despite me telling him some of this.

[tattybogle in reply to Alanna012]

Alanna012 .....Thanks for the explanation Alanna, i (sort of) get it .. there's definitely some logic in there .. but i think i'd have gone for trying a reduced thyroid hormone dose rather than 'none' . I just can't see how the shock of 'none' will help anything work better .. but then i've never had to deal with anything like angioedema, in fact i had to look it up cos i didn't know what it was . When i'm lost in this juggling act of "what's the right direction to go in to get back to the good place i was at ?", i usually try 'going down a bit' first rather than 'going up a bit' .... stopping altogether throws all the balls in the air ...

Do please be very cautious about following any advice to force yourself to 'push past' anything exercise based ~ forcing things usually breaks them . Although of course it depends what exactly is meant by 'graded' exercise. but it's not the GP who will be dealing with the consequences.

I hope you find your way out of this pickle soon..be kind to yourself. xxx

[Alanna012 in reply to tattybogle]

Yes thank you Tatty for giving me some sense!🙏🏿 I think I ought to have posted my intentions beforehand, so someone sensible could have said what you've just said, because once I come off meds, it's certain that my logic pretty much departs and usually I can't even see it by then, as it gets hidden by the initial 'feeling fantastic' mode I get into before it all goes south several weeks later. I know this. Why do I always still think it's a good idea?

I'm now stuck. I'm meant to be seeing some mast cell disorders expert next week. We'll see if he has any insight to offer me as I feel pretty beset with it all right now.

Negotiating it all on my own is too much sometimes and I just occasionally feeling like stepping off the gang-plank because the sea looks so inviting!

I've previously researched and detest the idea of graded exercise ideologically. It is based on a faulty premise that there is inherently nothing seriously underlying to prevent you from being mobile. I wasn't thinking straight when I rang the doctor (I usually have to choose words very carefully to avoid just this sort of nonsense scenario) and then I couldn't refuse it. I'm amazed that that's what he came up with after my call. I'm so tired of fighting to be understood and then the treatment gets worse instead of better!

Getting out of it means me being marked as non-cooperative. That's what worries me. I'm already perceived as a difficult patient just for asking for levo increases in the past.

I'm going to take your advice and add a little bit of meds in on Monday, just a bit at least.

Many thanks xx❤️

[tattybogle in reply to Alanna012]

remind yourself of this ~ there's a big difference between being difficult / non co-operative just for the sake of it because you're a congenital asshole ...... and being difficult /non co-operative because the person suggesting you do something it is an uniformed asshole .

i heard an excellent line on a film last night.. (which i was saving up for my own use in case i even needed it with a GP or and Endo,, but i'll let you have it early in case you need it at for dealing with the graded exercise situation )

"if i wanted the opinion of an asshole .... i'd ask my own "

[Alanna012 in reply to tattybogle]

🤣🤣🤣🤣 Brilliant! Oh thanks for the laugh!! xx

[Jazzw]

I’ve commented on this sort of question before. My personal take on this, from having read around quite extensively (for I fear that one day I might have to stop taking my incredibly expensive imported NDT) is that if you can avoid stopping cold turkey that would be best. Especially if you’ve been on thyroid hormones for any length of time.

Better (if you really have to), to reduce slowly over a period of weeks and months, to sort of trick your body into responding as though you’ve got a gradually worsening case of hypothyroidism. Think that would be the best way to get TSH rising (if that’s still possible—and it’s not a given) and to stimulate regrowth of a thyroid that will have shrunk after any length of time on thyroid hormone replacement.

But that all said, if your thyroid is irreversibly damaged by autoimmune disease or if the pituitary-hypothalamus feedback loop is permanently damaged, stopping thyroid hormone replacement is NEVER going to work, cold turkey or over a much longer period of time.

[snow22]

I was given a CT scan with iodine. I told doctors before I did not want the iodine but was told I should do it. When I went hyper, with no sleep and was then ignored by doctors I thought my only option is to stop levo. That was in March 2020 and I am still of it. I try to stick to the autoimmune diet and take the vit’s recommended.

[arTistapple]

I can’t contemplate hardly reading this post. I get it! How we try to get our heads around this stuff; especially where we get no help from medics. Alanna012 what you write makes perfect sense on the face of it but the ‘whole’ I am having difficulty with. I do hope whatever and why ever you guys are doing what you are doing works out for you. Truly Best regards.

[Triciatextiles]

It took me two weeks then I crashed and could barely get out of bed - stopping levo was on the advice of an nhs endo who believed I didnt have hypothyroidism for the last eight years! I don’t recommend trying this.

[chrisbuy63]

I stopped once for a few months felt great ar forst but when I crashed I crashed and was so tired I could barely function. Also got all the horrible add ons like weight gain and fat puffy skin and thinning hair. I don't know what it is about levo with me I have a love hate relationship with it and can never seem to truly accept I need it..... but I do!

[tattybogle]

Hi  maplewood just been reading your old posts ~ your situation is very different to most people ... so how they react when not taking Levothyroxine will not be the same as you.

You have always felt worse on Levo than you do without.

So i'm just going to empty my thoughts on here , but they are not in any particular order .. and they don't come to any particular conclusion about what to do ...

you had TSH 12 at diagnosis, and you initially took Levo for 6 years , increased it appropriately and gradually and got up to 150mcg at one point ~ but feel really terrible.

The GP advised to try coming off to see what happened . and you were off for many months ..and felt much better 'of it' than 'on' .

TSH hung around at about 5/6 ish when off Levo for all those months., with fT4 hanging around near the bottom of the range.

The GP consulted with an endo who said they wouldn't consider you for a trial of T3 ( or T3 only ?) unless your TSH got up to 10 .. but you decided to try Liquid Levo from GP when TSH was about 7 ( i couldn't work out whether you restarted Levo because you felt really hypothyroid..... or just because you were worried about 'not treating it' and having a TSH of 7)

That was just as bad as the Levo tablets had been , but you gradually increase to 75mcg before finding it intolerable and coming off again at GP's suggestion..

and you've currently been taking no Levo at all for ? about 10 months. ?

Do you know how high your TSH is currently ?

How do you actually feel now ... ? worse than when on Levo... or better ?

Did you ever really feel you wanted/ needed to take Levo to help with symptoms of hypothyroidism ( did you have any ?).. or was it just because you were advised to because of your TSH being 12 ?

Would you like to try T3 (or NDT) instead of Levo if you were prescribed it ? ( i get the impression you are not at all comfortable with the idea of 'going it alone', and would find it v hard to afford a private endo)

or do you still not have any significant "hypothyroid" symptoms and are happy enough to stay as you are until TSH eventually does go over 10..

I presume your TSH will EVENTUALLY get over 10 ( but it might take over a year year to get there) .... as even though you have negative antibodies , you did have an ultrasound showing a very small thyroid gland and when you have previously came off Levo for several months your TSH eventually got up to 7/8 ish .. so i assume if you stayed off for longer , it would continue to go higher )

So bearing that in mind .. and bearing in mind how much worse you felt on Levo & liquid Levo ... if i were you .. i think i'd just wait till it gets over 10, then push like mad to see an endo ..and in the meantime do some research about which endo you want to be referred to when it eventually happens (one that is recommended and known to prescribe T3) .

Can't believe i'm suggesting someone 'waits till it gets over 10' .... but in your case it really does seem that (at the moment) ~the treatment is worse than the disease.

[maplewood in reply to tattybogle]

Hi, thank you so much for that, near enough right. I have just resumed at 25mg but i am splitting the tablet in half as they forgot about the liquid at the pharmacy so 12.5 morning 12.5 night. I had to resume because i had hypo symptoms and latest bloods were TSH 6 range 0.35-4.7 and T4 was 7.7 range 7.8-21.00. Hypo symptoms where mostly zero energy by 2pm, tingling, carpel tunnel in wrist, attacks of not been able to get warm, generally feeling quite ill. I can not face waiting until i get to TSH12 because the first time i was so ill my joints were so painful i could not walk and they thought i had lupus. I asked the question about how long people had managed without meds because i wondered if it was usual to have a long length off meds, i thought i would have been ill sooner say at the 2 month mark. I wondered how long it would take to get high TSH off meds basically i was hoping i did not have a thyroid issue having hung on so long as i expected symptoms sooner. I have no chance of the NHS treating me on T3 only as i can not reach TSH 12 without considerable pain and problems. The main issues i have with levo is that within an hour or so of taking i get so hot and then start perfuse sweating. It hasn' happened yet as only taken for 3 days but both times before i had to report feeling like i was been stabbed continually all over body. The last time they took me off the medication because of that reason. Then as time goes on and i get more meds floating around my body i get the added bonus of shortness of breath, panic attacks, palps, feeling faint and feel like i am dying. I do not know what i can do other than try and see an endo privately. I need to know if those symptoms are caused by allergy or the fact i do not need medication which is what the endo i saw said. He said he had seen people with really high TSH and mine was low and therefore at the moment i do not need medication. I worry that if i do not take meds i will end up like last time or worse have a heart attack or something. x

[tattybogle in reply to maplewood]

maplewood The endo's comment that 'he's treated other people have higher TSH 's than you' was not really helpful .. you are not 'other people' . People are individual , especially when it come to thyroid hormones .

We've seen people on here who were walking and talking and going to the gym with TSH 50 or more ,who were "just wondering why my skin is a bit dry/ i'm feeling a bit more tired than usual, my GP is freaking out about my really high TSH , but do i really need to take Levo ?" ~ it happens ... but we don't use that as a basis to advise everyone else with TSH 50 to just get on with it and stop whinging , or tell them that they don't really need to take thyroid hormone . I was more or less a zombie with TSH 6.8,, and most people on here would feel terrible with your un-medicated results of TSH 6 and FT4 7.7[7.8-21]

Your symptoms without levo , your small thyroid size , the fact that your TSH continually and repeatedly goes over range when you are off levo and regularly gets to 6/7/8 (and in the first instance a few years ago got to 12).. and the fact that your fT4 crawls along the bottom of the range and is now slightly under range again ... all point fairly clearly to you needing to take thyroid hormone replacement 'of some sort' .

Have you ever had your vitamin levels checked ? low vitamins can make it much harder to tolerate Levothyroxine .. Vit D / Vit B12/ Folate/ Ferritin ... i suggest you write a new post asking for advice about what you can do next, i'll tag   SlowDragon /   SeasideSusie so they know there is a brief summary of maplewood 's history in my reply above this one.

[Petgirl2]

Hi, longest I did was nearly 5 months, felt on top of the world for the whole time, then January last year had an horrific attack, very much like a stroke. Long story short, selenium level was dangerously high. But still have milder symptoms a year later, so I think my t3 t4 needs sorting. I wish there is a natural substance to do this, (something in foods). I already eat thyroid stimulating foods.

I wish the doctors would have taken my bloods when I had this meltdown, I'll never know what my levels were off meds and I'm too frightened to try again

[BlueKeith]

I asked same question a while ago. I thought the levothyroxine was to blame and I've been getting worse. After reading the stories on here of other people doing it I decided not to. Good job I didn't. I now got all the symptoms including the worse constipation of my life. One doctor said I was probably over medicated. I had blood tests and I am undermedicated. I've been put up to 100 levothyroxine and told will probably need to increase.

[SlowDragon Administrator]

Early in my diagnosis (hashimoto’s with extremely high TPO and TG antibodies) and multiple vitamin deficiencies (that I wasn’t told about or prescribe anything for) ……I was left 3-4 years extremely under medicated on just 75mcg ……horrific symptoms

So on 3 separate occasions I stopped levothyroxine

….initially when you stop levothyroxine it’s extremely common to initially feel better…..as Ft4 levels drop….conversion rate improves and lower Ft4 stops that “wired anxiety “……before you plunge into return of hypothyroidism

First time I stopped ….after 2-3 weeks ……mildly slowed down….colder….constipated….dry skin etc. So after 3-4 weeks restarted Levo….symptoms slowly resolved

2nd time I stopped……after 10-14 days very unwell, freezing, no energy, and massive increase in anxiety

3rd time (and never again)…….had the brief few days feeling better after stopping……and then “fell of the cliff” after about 14 days …..couldn’t eat, couldn’t walk, could barely get out of bed, freezing cold….even with 3 duvets and electric blanket….dramatic loss in weight, …struggling to breathe, couldn’t find right words etc. Took 9-12 months to recover enough to manage 20 minute slow walk

After this dramatic implosion I did at least get my (previously denied) referral to NHS endocrinologist of my choice

Dose levothyroxine was slowly increased over 2 years up to 125mcg…..and eventually after joining this forum I got vitamin deficiencies corrected by self supplementing, gluten free diet and T3 added. Most recently now dairy free too

[maplewood in reply to SlowDragon]

You have certainly been through the wringer too. I get so mad that whilst feeling like death we still have to find out info and self help and i will admit that now i do not trust any of the GP's and Endos because not one of them has listened to what i am saying. The last GP i spoke to said "Its ridiculous that a hormone replacement pill can cause you that trouble", " Its just replacing hormones." I would love for her to sample my problems . Interesting though that you say you increased your dose over two years. Maybe i went up too soon but having said that i had problems from day one, i will bear that in mind though to take things slowly. I have also gone gluten free and that has made a huge difference however the test did not say i was lactose intolerant so i continue with milk but don't really eat much of any other dairy. I will save for the professor if no improvement on this my last attempt at levo.

[SlowDragon Administrator in reply to maplewood]

I have only recently gone dairy free (with great reluctance) ….astonishing improvement…..more on my profile