Scared to stop levo, scared to raise levo, pretty bad symptoms, what to do.

[storm]

I shall try to keep as brief and to the point, but pretty scared and not a clue what to do for the best.

I know I am going to need results, but I haven't been well enough to go for recent tests, too unsteady and can't go out!

Anyway, started 25 mcg levo in May for a week, then raised to 50mcg. (Day 1 on 25mcg caused leg and spine issues, ie weird heavy and a bit disabling) by the end of the week I was still weaker but managed to be bold enough to raise to 50mcg, since May, on this 50mcg I had changed from Wockhardt to Actavis, which made me very dizzy, all the time, back to Wockhardt multiple ie 2tablets at mo. After a number of weeks I became more tired, but I have had heart symptoms of a scary nature and throat closing sensations, where I have to grab hold of something to 'stop me passing out' and cough to feel able to breather easier, hard to describe but it is like a rush, heart racing, dizzy, falling, can't swallow....worse than anxiety or panic attack..

Also I have had a number of weeks where it has got really hard to walk across the lounge even....defo struggle to get upstairs...but when near top of stairs, I feel like I am going to fall down them, horrid, this is since being on Levo.

The Docs wanted me to go up to 75mcg based on symptoms then be retested.....and because I feel so scared with these weird attacks and knowing the Levo makes my legs and balance worse, I am struggling to want to go up. I know people say you may need more....but I had side effects from 1st tablet, I am likely sensitive.

So without up to date scores here.....what I want to know is...

The level of scary symptoms and all day and night dizzy sensations heart symptoms, legs don't want to walk....worse than before on med..........yet I was severely hypo with TSH >100 and 2500 TPOab.... altho FT3 was in range before taking Levo.

Is it not possible that Levo is doing more damage as it is not known which process the body is preventing in relation to (forgotten the term) D1/2/3/4 which could be wrong...but so you know what I mean, it is said some causes play down say 'D1' or 'D2' and whichever can raise RT3 etc...or shut down certain processes...

I am worried with my level of TSH that was >100 as the machine only went to 100....and low T4 which was about 8 and heart symptoms....racing....throat ceasing...type of nr collapse thing...and that is even when sat in house...and never going out....what on earth am I meant to do...the Docs just say need more Levo...but they don't know. They say it is natural and no side effects...same as body etc...I am NOT neurotic, but worry if I try to stop Levo that I might die from this condition.

I nearly stopped the Levo...don't know whether to wind it down to 25 or stop instant...bloodtests are a nightmare for me to go thru....I am one of those type!

So critically ill before taking Levo and feel worse symptoms on it...

I can't make it anywhere up country to see Doc to prescribe natural dessicated or anything, I can't go up my own road.

I have been fobbed off so not able to see Endo. Being NHS I am not sure I'd trust them to be better than Doc.ie only want to give Levo. Would they look into D1/2/3/4 (as I call it) there is also something about ig1/2/3? proteins? I gave it some time before I went on Levo and in the middle the T3/T4 were in range...TSH was 8ish, lowered from 77 all by itself...and I thought it was healing...tho antibodies TPOab were 200 then....2012! A year later TPOab 2500ish. I had a lot of stress and poor diet and thought that was the cause of this hashi/hypo and you'd think that lowering the stress and eating properly would make it heal...but could I risk it if my levels are so bad....and would they be even worse off Levo, now that they have been on Levo...see what I mean...or will thyroid try to match what it was before.....ohhhh despair....and fear! And not much help from several docs.

[Jackie]

Hi I have to admit I could not quite follow your letter. However, it is considered much safer to have a new blood test, TSH, T4 and Free T3 before any rise in meds. On line ifNnHS a problem. You also desperately need a vit D ( hormonal test), if low a corrected calcium test before D treatment, Endo best or otherwise GP. More complicated than it seems. Thyroid can get worse before it gets better. You are on a low dose, but still may not be the best choice for you. If your FT3 is sufficiently under the top of the range, you should ( for the high TSH) be on T4 ( levo) and T3, started slowly. T3 split into 2 and start at half the prescribed dose.T4 should be in top third of range on the correct treatment. I suspect something is more complicated and it would be good to find a good Endo, by your own research, then ask for a referral.Endo will also do the other important tests which are very relevant. How you feel is important but equally for safety the blood results are essential.

Best wishes,

Jackie

[storm in reply to Jackie]

Thanks Jackie. I have zero energy, to the degree of really struggling to get across the room or do anything, I do keep trying mind.

I asked numerous times for Vit D test. The last excuse was needed to be in lab within 10 minutes...and as tested at docs not possible....they never told me that before.

I am simply trying to find my way thru a minefield to work out if my symptoms are due to body rejecting or misusing Levo...as it is crippling me. I am so close to feeling 'deathly' that is why I a, scared to raise Levo. The docs wanted me to raise it for a number of weeks then get tested....I am saying it is major trauma, to get to be tested and feel faint at the time...and lie there ages after to recover....I have nobody helping me.

I had one doc mention T3, then I couldn't make apt, so when I spoke to the next doc, he said he'd never prescribed it and didn't know how....lol. Said he'd speak to other doc.....but never did. I have been trying to find enough oomph to endure the dreaded bloodtests..I am also scared T3 will be same or worse effect as T4 if I am sensitive to meds.

I have had 19 years of not being well....they considered CFS, but never proved that. I defo had agoraphobia panic for 19 years though. So something underlying all that time.

I also had heavy bleeding, then petechia which is still there...before the thyroid issue was discovered...so they never found out what that was either.

High TPOab and don't think the lab tested or maybe not asked on the other antibodies.

I was simply told no, to seeing endo....even my previous employer asked ( I lost the job).

I am so drained of looking for answers to similar things....I know some have said more tired etc....but near collapse or really scared.....or unable to easily use stairs, when used to run up and down not holding on before meds...even as a very hypo person with exhaustion, I wasn't this bad....I gave in to going on Levo due to fear of dying in winter....low body temp, couldn't warm at all....skin was shrivelling, old...heart racing, tongue had pin needles sensation/swallowed tongue feel. (I have pins needles down arm now on Levo instead).

I am so torn over what to do, hence jibberish...soz! In an ideal world it would right itself and never need med again....hence why I was trying to work out if T4 works when certain enzymes D1/D2/D3 deiodinases are up or down....see what I mean, as I have tried to decipher online and it seems root causes vary and so one person might have higher or lower D1 or combi...and as it is related to RT3 etc...maybe that is why T3 might work in some cases...who knows.

Thanks, I will still try to get up the nerve and strength to get tested...but just wondered on how people decide if the Levo is doing more harm than good. XX

[bantam12 in reply to storm]

How about speaking to your GP on the phone, explain that you can't get to the surgery for tests and ask if the District Nurse could come to your home and do them, they do this as routine for people who can't get out.

I think you also maybe need to stop trying to work out the science behind all this, you don't need to worry about that for now, your TSH was very high so it may take a long time to get it down and levels to stabilise, 4 months on meds isn't long, it can take 18-24 months to feel well again. You have to give the Levo a good trial but it has to be at a decent dose, 50mcg isn't enough with levels as high as yours. You could also try changing brands, Wockhardt causes problems for many people, Actavis are usually the best tolerated but not for all, you could give Mercury Pharma a shot, it is trial and error until you find one that works for you.

So get on that phone to the GP and start the ball rolling, good luck.

[storm in reply to bantam12]

Hi, thank you. I had no idea a district nurse would come out. I will have to enquire as I am one of those that doesn't still accept how ill and still tries to push occasionally to act normal...but can't...yet it is only starting to sink in...

The reason I am trying to understand is I have read a lot....some say stress causes one system to slow....it kind of indicates in time, things could sort themselves if trigger of stress removed etc....plus detox, good food etc. mentioned....I know we are supposed to accept this is final....no cure....

I started on 25 Wockhardt then to 50mcg Actavis which I felt worse in some respects...then back to Wockhardt....not tried Merc. but I thought Wockhardt had least additives/filler/ altho I am suspicious why they don't do above 25mcg....and so I take multiple...

I am not sure if, as TSH is lowered, that it shd balance with Levo...so if undertreated, TSH would still be telling thyroid to make more.....or whether the levo slows things yet isn't strong enough so you get a kind of mass deficit if on low dose..

I feel as number one 25mcg tablet affected my spine and made walking more difficult...then all subsequent tablets would be that strong an effect....hence if I felt that first so strong, and feel like I can hardly move now...I don't hold out much hope that 75mcg is going to make me feel great

Thank u.......I was feeling a bit like giving up on NHS and docs etc...I can't afford a naturopath or private tests...but still can't give up on idea of natural cure...the docs think that if you get levels right the antibodies cease, so they are saying the auto immune attack is due to faulty thyroid!

[Jackie in reply to storm]

Hi Some tests, nHS can be a problem. FT3 we often use Blue Horizon, quote TUK 10 for dicount, finger prick or venous blood but do not go to Spire or Nuffield with that, very expensive. Do it direct through the site. Their vit D is the best one but dearer. The one the same as NHS is done at City hospital for £25, finger prick very simple. See the site for phone number ( bloods) If low you still need the GP to do a corrected calcium test to check it is not at the top f range as D effects the calcium and calcium must always be in range, no matter the D status.I am a scientist but best to be straight forward first, get the bloods right, feel right and then consider the finer points. Find a good Endo by your own research then ask GP for a referral and they will do all the bloods. it is rubbish about the GP and D, they are very bad at testing for it. I know my surgery only tests 2 patients, me being one!If you DIY never send any bloods to arrive at the weekend.A good endo has such a wide remit, unlike any other specialist so is always a good starting point.

Best wishes,

Jackie

[merissa in reply to Jackie]

jaki, question for you, should I take vitamin D with kidney calcifications and stage 3 renal failure?

[storm in reply to Jackie]

Thanks ever so much Jackie....I shall work on me, getting up enough to try to arrange, it is difficult, I must sound weak...but when on own and issues with going out, it is hard to push for appointments....vicious circle of course...need the help...but so tired of trying and distrusting

[Mouse]

I think you may have adrenal fatigue as taking levo is making your symptoms worse. I have this and can't even take 25mcg per day without feeling worse. I am now on NDT but still have the same problems.

I have been to see Dr Peatfield who has diagnosed adrenal fatigue so I had to stop the NDT while supporting my adrenals with supplements and then start the NDT again. The first attempt was unsuccessful so I had to stop the NDT again and I am now starting to take it again but very slowly. So far so good.

As levo has a very long half life it wouldn't do you any harm to stop it for a couple of days to see if your symptoms improve. This is only my opinion and it would be better to get qualified advice but main stream medics don't recognise adrenal fatigue.

[storm in reply to Mouse]

Hiya Mouse, thanks. The last time they tested Cortisol was likely over a year ago and it was a single morning one and came out top of range, so I mentioned adrenal fatigue and was told because my cortisol was high that adrenal was good.

I am torn as some people are NDT and apart from the major thing of docs refusing to give it and me not being able to travel anywhere, it is hard....and my concern was...what if that cause issues too. I am frustrated as I was severe scores before starting Levo...and gave in to taking it, much to disappointment that now worse...like I say the first 25mcg made me totally cease while trying to go round supermarket....I made about three aisles and was stuck at back of shop thinking I'll not make it to front of store.

No, it is good to have your opinion, thankyou...as I was seeking someone that may also have trouble at low dose...irrelevant of whether my adrenal is bad or not....something is making me worse from taking med.....I understand people say you may get worse....but to this degree???...I shall try to go back to doc and also force myself to go thru tests....won't be overnight...likely take me more weeks to brave it....lOL.

I nearly stopped Levo last night but scared of what may happen.

I was alarmed at the ten times antibodies within a year...envisage gland being eaten fast. Envisage snuffing it....LOL Scary symptoms...ohhhh they so need a cure! XX

[Mouse in reply to storm]

My saliva test also showed no problems with my adrenals although the small print did say that if it had been a long standing problem then my body may have adjusted so it wouldn't show.

Dr Peatfield checked my blood pressure sitting and then standing and also my reflexes. My blood pressure dropped when I stood up and my reflexes were only working at about 70%.

He said that this suggested adrenal fatigue and I now have to check my blood pressure sitting and standing at home. My blood pressure difference improved when I stopped the NDT and took the adrenal support but I tried to increase the NDT too fast and not only did I feel ill but my blood pressure dropped again when I was standing.

The other thing he said was that if this didn't work then it may be a conversion problem, which may be your problem. Which means that the T4 (levo) builds up in your system rather than it being converted to T3 as your body requires it. If this is happening then this would also make you feel very ill. Have you had T3 checked since you have been feeling ill? You should have the T4 done at the same time and if the T4 is high and the T3 is low then this could be your problem.

[storm in reply to Mouse]

Thanks, hmmm... I knew not to believe everything told and so I have argued with docs on every occasion...haha, I will have to see what adrenal test shows...as it may have changed since that one high cortisol test, for which docs say no adrenal issue...

I have had issues with weird things for years...ie getting up out of bed, touch and go whether I got heart racing on that....also stepping out of a lift, legs go like jelly....off an escalator....same...sitting to standing, occasional dizzy but always heavy leg syndrome since being hypo.

I tried doing a bit of weeding and bending down with hand brush and standing to put leaves in bin...a few times was hard...but to walk a few feet after doing that, I struggled,, in fact on one occasion I was sooooo slow at picking up leaves...I had to sit on doorstep with heart racing....and I hadn't hardly done anything at all...

It was like I couldn't recover without sitting either...felt awful.

I've not been tested since on Levo and as tests and also going out are a nightmare...the tests as I always feel faint, so it is trauma making me go thru them. So april/may was last time tested. I first thought it was just selenium to convert...now realise more complex...but regardless...I feel rough on T4, so even if you raise it...what on earth is it making the body adapt to.

I haven't taken Levo (yesterday now) that was a decision I made last night to try without, instant reaction or thought is that legs feel better, less heavy...but my eyes and head are a little weird and it isn't supposed to be that quick leaving body...I hope the gland can kick in....I don't know where I am going from here...will take a while to get doc appt.....or couple weeks to be tested if I make myself...if I feel weird after missing 50mcg....I hate to think what is likely to occur....I was gonna cut down to 25 but read it is better to clean break. Remembering how bad my scores were before going on T4 I hope I survive this trial....

[wall]

A good endocrinologist wil understand with blood tests..which way you need too be going ...

and stop the meds if you feel they make you feel ill .best thing ....good luck

[storm in reply to wall]

Hi Wall, thanks so much....I've tried since May...and don't feel able to up them just to test if more needed...as it is so bad. Appreciate the support here X

[wall in reply to storm]

Hi !!keep asking..

I know it is hard work with docs at times and money seems to be a problem to them and they have to keep to budet I belive, but that is no use to us if we feel ill ...be strong ..have courage you need it!! ...so many to support you on this site .it is your life your health !!

...Bless you ..

Margaret x

[storm in reply to wall]

I was diagnosed 2011 and apart from the mental side of having to take tablets for life.....my docs have me down as being fussy....but I am weighing it all up, hence asking here...if my TSH was over 100 and I didn't have heart symptoms etc... I might have stopped Levo sooner...it is despair can't win...lol. Also I was having pins and needles in tongue and blood pressure went up before I started levo...since on levo...pins and needles down right arm and hand...yet B12 was ok...will check that again though. Thank U sooooo much, feel better since asking here XXX

[tavy]

sounds like an allergic reaction to thyroxine. Im not doctor but Id see someone else fast. good luck

[storm in reply to tavy]

Hiya, defo doesn't match with all the other info, that may feel tired symptoms come back.....yet I am way worse, I used to be able to carry my elderly dog upstairs before Levo...now can't feel steady enough to get on second step. I wasn't totally slow before levo....I feel legs just not right at all, even standing from sitting on sofa.

[Kitten-whiskers]

Hello Storm

A simillar thing happened to me with the thyroxine, I was also near to being bed bound, with heart palpitations, high pulse, struggling for breath etc, and part of the problem was that I had adrenal fatigue, Underactive symptons & adrenal fatigue symptons are simillar so it is hard to tell. What needs to be done is an ASI test - this not provided on the NHS. Do you have internet access - you can get various forms of medications/ tests done if you know where to look and you won't have to leave your house. I think also you need to have your Vitamin D level checked, as low Thyroid can deplete this as well making you feel even worse.

Best wishes

[storm in reply to Kitten-whiskers]

Hiya, Kitten Whiskers, thank you sooo much for this, I was put off the idea of adrenal fatigue due to the one cortisol high score a year or so ago....but as I have been ill for 19 year with high anxiety and stress and fatigue...I'd think yes adrenal...I started to feel a bit better after stopping work and resting, but taking vits...this was 2012....when the scores nr righted themselves...still TSH 8 but down from 77 and T4 and ft3 in range etc...then all went wrong this year...still unable to work or go out...higher TPOab.......TSH back to >100 and could be anything as machine only go to 100....hmmm wonder if adrenal fatigue, despite that cortisol reading.....I shall have a look for that test....thanks...and as for Vit D....I know I avoid sun and have for years so may well be low.. XXX

[Kitten-whiskers in reply to storm]

Hello Storm,

It sounds like we have alot in common, Do you think your receptor uptake is sluggish? What test did you have done when your Adrenals were tested? was it the ACTH test (Synacthen Test) If so then this only shows up addisions disease, not adrenal fatigue. Have your Aldosterone levels been checked? Your TSH is very high and I wonder if what is happening is the T4 is building in the body and not going into the cells properly, this causes toxicous making you very Ill indeed - this is what happens to me. Have you tried any other form of T4? As for the Vitamin D - it may be worth requesting a blood test from your GP, it tends to get depleted with our illness, mine was very low but please be careful when the Dr gives you a 2 week course of very powerful vitamin D - this made my levels too high.

Best wishes

[storm in reply to Kitten-whiskers]

Hi, the docs argued and didn't do any further adrenal tests as they said I'd have low cortisol with adrenal fatigue and not high, like it is. (or was)...same as TSH etc may have changed since being on Levo but I don't know it yet as need retesting...mind you I was torn , but maybe should have been tested before coming off Levo, to get score and better picture...if I go in next couple of weeks it will be a false pic I guess.

Something not good was happening, and the feel that you are going to fall down stairs is not fun, nor is the throat ceasing thing....

I've only tried Wockhardt and Actavis Levothyroxine...as so unsure whether it is safe to mess with online ordered things and docs said no to armour and even then how do I know the body will accept...I am so poorly it makes it hard to want to experiment and I am sure you feel the same.

I asked for Vit D tests several times....one time the lab said no separate D sent...the next time that changed to "Can't do it as needs to be in lab in 10 mins" (it's about 20 min drive from docs where they do the tests.

I am scared now though....day one after taking no Levo...it is a weird one and I am really really tired...but two things are better...legs a bit easier to get upstairs and throat not pulsating so fast at the mo...anyway.

I have read online people had serious issues stopping it.....eek

[Kitten-whiskers in reply to storm]

Hello Storm,

I do know how you feel, I also got very scared & I know what your going through as I also have terrible symptons and i really feel for you - it's a lonely place to be, their seems to be know answer and know doctor to turn to. I did seek private help and one thing he was very clear on was that the TSH levels from the blood test really don't mean that much - their are a number of other factors involved and it is really important to go by how you are feeling and also keep a diary with what your taking & how you are feeling, what symptons you get - that way you can analyse this and see whats helping and what isn't. One thing that should always be checked is your pulse & temp - your waking pulse & temp & just before you go to bed. Do you know what your pulse is? This paints a clearer picture of what is going on. Do you think maybe changing your Doctor may help? Also are you taking any other vitamins/Suppliements?.

Best wishes

[storm in reply to Kitten-whiskers]

I am worried as live with just my elderly dog and nobody helping etc.

I started to check temperatures way back, at one stage I was as low as 32 then it slowly climbed to 34 35 and was up down for ages several times a day then when my TSH was >100 temp was nearly normal...at 36.5 variable..to 36.8 highest recorded and I though oh good...then had the blood test and shock horror....but I also had pins n needles in tongue and face felt at bit numb at times this was April/May when I decided I had to do Levo.

However when diagnosed in 2011 I had TSH 77 low T4 normal T3 but 2012 was TSH 8, T4 13 T3 normal........so I got excited and thought that it was because I'd not been at work, had rested...took 1000mcg some days, took multivit some days...and put extra salt in stews and had that several times a week...

2013 less multi vits....some brazil nuts on and off...tried to eat healthy but in reality not brill due to finance....then cold winter...couldn't get warm at all....and all downhill from there again...deathly cold. So gave in as desperate, to taking Levo.

Only had pulse checked at Docs....

Just before taking Levo blood pressure went up, but next visit down again.

I had been going anything up to between 16-24 hours wide awake in the head...so sleep erratic...then since May being on Levo, can't last a day without exhausted...

Today is weird and no Levo....I normally take at midnight... I checked temp just now to see how bad and it is 36.7 at the mo...so will check that over coming days, morning aft, eve etc...when I remember...haha.

But remember it was highest 36.8 when TSH was 100..T4 5.4 T3 4.1 so defo hypo with temp showing good metab....huh?!! LOL

I read the TSH causes damage in body and some do say it makes no odds what TSH does....but my level was very high...it is hydrogen peroxide...bleach isn't it? LOL.....Ewwww!

I have seen different docs and occupational private docs....all much the same, one told me they are not trained to look at causes, it was the most honest thing I'd heard...and that was a locum..I have quizzed every doc and pharmacist as much as can everytime...evem same questions....no real answers...it's levo for life...one mentioned T3 then when I saw another to ask for it, he said he'd never presecribed it so wouldn't.I am going to try to take supplements...altho I can't go out and when looking online I am never sure what to have...there's additives in all.....or filler....I've had chewy bassetts....not much result don't think....I've had asda...seemed to make a difference, that one time my scores bettered...and they have iodine in too...but lowish...maybe it was the salt loading that made thyroid work....then packed in....if it is low now and body couldn't make enough before Levo, this is when I worry...

Will see how tired I am tomoz and next day...but even more worried that online says 10 days or some say a month before the crash....I thought I had a bit of that today...already.

[Kitten-whiskers in reply to storm]

Hello Storm,

Sorry to hear you are so poorly. Are you taking a Vitamin B Complex - in particualr B12 - the reason I say this is amongst other things symptom Include Dizziness, lack of energy, Pins & needs & sore mouth & Tongue. Has anyone mentioned melatonin to help you sleep? Have you had your DHEA levels checked? When you take the T4 what happens? Has anyone gone into any real detail about T3?

Best wishes

[storm in reply to Kitten-whiskers]

Hiya, it appears I must have been left on the shelf, despite asking for lots of answers from Docs and tests...you are mentioning so many things they haven't done and I am lacking knowledge in.

I do this thing....look t multivit or B complex in supermarket (or did when I could get there)...spend ages looking and in past have bought and not used...

I#ve used the multivit as mentioned but on and off etc.

Not had DHEA levels checked as I mentioned I still got told high cortisol, good adrenal...just hypo, take meds and be fine...that is all the docs, all say same....

Nobody gone into detail on T3.....so also scared about that...and not got it yet...if ill on T4 what the eck will T3 do.

before on T4, my T3 was in range for two consistent bloodtests..a year apart...the T4 was low and TSH sky high, so my theory is do I need T3 and what happens if you don't have T4 and body not able to make it...I feel sure T4 is needed even if you take T3.

Today I am more scared still as two days without Levo and extremely exhausted...and like I said most people think it doesn't hit you until betweem 10 days and a month...if I get worse I will be on the floor....I so wish someone had the answers... XXX

[Kitten-whiskers in reply to storm]

Hello Storm,

Why have you stopped the T4 for Two days? T4 can remain in the body for 10 days but if you feel you really need it then please take it, I managed 5 days and then I paid the price for that. The GP's will not test for DHEA and do not do the ASI test but I can point you in the right direction if you needed them tested. As for your high Cort levels - what did they give you to lower them? Their is evidence to suggest that Zinc & Chromium (both trace minerals) lower the cort levels. If you are struggling to take the T4 then maybe you have the conversion problem? Does your pulse increase when you take the T4? I'm sorry to keep asking questions, but it does sound like our situations are very simillar and how you are now, that was what I was like last year & although I am not by any means well, I am better than I was then & have been doing lots of study and I would really like to help x

[storm in reply to Kitten-whiskers]

Hi, I was struggling with T4......day one on 25mcg months ago it went to my spine and legs...I got a bit used to it, but not totally..dizzy every day....legs got so weak I could hardly get upstairs and coming down I had to hang on at top before putting first foot on, felt like I was falling down...and may have done...I could no longer carry my elderly dog upstairs, too weak...could barely walk across lounge....kept having mega scary throat closing sensation....some kind of rush feel....body didn't seem to like it. So I decided to try to stop....and this is why I asking, as soooo scared.

Please tell me what happened when you stopped as I am not sure what to do....scared of collapse or coma etc...but don't wish or feel able to go thru medical channels. Certainly not hospital.

They didn't do anything about cortisol....it was .5 under top range, so they call it high but normal.

I have had high blood pressure, which went back down...but defo I felt like heart beating fast all the time...throbbing in throat, flutter in heart...

I appreciate your help....I am just struggling here to even type...LOL....my main concern is what on earth might happen as I have been exhausted from day one off Levo, now on day two...defo knackered beyond any normal hypo tired...I really want gland to kick in...but what if it doesn't///granted it was not working well before Levo...but I had loads more energy than when on Levo...my head is more awake without Levo....on it I was struggling to stay up for even 8 hours a day...

Sorry to be a bit poor answering....it is just really bad right now XXX

[Kitten-whiskers in reply to storm]

Hello Storm,

What your saying rings so many bells wtih me & my heart really does out to you. The problem for me was when I took T4 it would build in the body unused and I would get racing heart, Dizziness, waking up in the night chocking for breath, my pulse would shoot up (at worsed was 125) I would feel hyper, my upper body would be sweating but the lower half ice cold, the list is endless, so I had no choice but to stop the T4, to begin with I could only go the five days but that was a real struggle, I was near to being housebound and spent most of my time laying on my bed Ice cold, Struggling to breath, full of pain all over, and was unable to do anything, I was constantly confused, If I needed to get out of my bedroom I would crawl on to the landing and sit at the top of the stairs, lowering myself slowly but what changed that was Hydrocortisone. When they checked your cortisone levels - it does seem an inadequate way of doing it, if you are in a surgery and someone is pricking needles into you then naturally your Cortisone levels would increase. I was just told my cortisone levels were fine, when I saw my private DR, he done the ASI - which proved that my adrenal function was low. The adrenal function is so important, it is only part of the picture for some of us but it still needs to be dealt with. Has your GP send you to an endro?

Best wishes

[storm in reply to Kitten-whiskers]

Thanks so much for this! I am really struggling, not cold as yet...but have been in past...defo can hardly do anything though...this is only day two...so on day five, did you take something or push through longer without taking anything...obvs you couldn't go anywhere...

I have been housebound for most of couple of years...just the odd brief trip to doc...or a corner shop, supermarket literally went about three times, hanging on to trolley for dear life...lol and not getting far...but some is agoraphobia/anxiety that I have had 19 years, it got worse with thyroid prob. before Levo and defo stuffed as too weak on T4. That is why I said to docs adrenal fatigue....as 19 years of stress/anx/panic.....but they said nope, adrenal opposite...good, as otherwise would have low cortisol...hmmm.

Docs also said no endo needed and that was private works doc as well..

I am stuffed, broke and no help....mega stress financial and with elderly dog...

I was likely needing to crawl on T4...was close, I think the only reason I managed to stay upright was mind over matter....even half way down stairs I was confused at to which foot, disorientated etc...

Like I say the legs are less heavy off Levo...but the whole of me feels exhausted I have had a couple of waves of almost palps...or almost feeling a sick rush...but in general, it is more a worry of collapse that I have.I tried a couple of times to get down my drive, it is short...and I turned halfway not steady enough..ground feels a bit on a slant etc. Only went for air and stretch legs...not good.

I should be in bed, but with dog needing to keep going outside....etc...not really set up downstairs to have bed...sofa isn't comfy either...LOL....then I'd still need bathroom...but I am still a degree less unbalanced at top of stairs than when on Levo....weird...even in this state. XXX

Do you know if T3 has side effects like T4.......it is similar just extra molecule...?

Or have you tried Armour...not that I can get it...and then that has T4 and 3 and does it have 1 and 2? Or would Nutri Thyroid work? I hear people get shudders on that and heart racing.

[Kitten-whiskers in reply to storm]

Hello Storm,

With regards to your agoraphobia/anxiety have you looked into the Linden method - that is highly recommended ( a member of my family used it)

I have taken both the Nutri Adrenal & the Nutri Thyroid but sadly they just got evacuated from the body (ie down the Toilet) I think whatever form you use (unless you just have the conversion issue) then nothing is going to work as it should. The T3 is much more powerful than the T4 and can be devasting if other things are at play. I was until recently terrified to take any more T3 but in my case it seems to be the way forward. The T3 doesn't need to be converted like the T4 does, so if you have the conversion problem then this maybe the way to go. I have never tried Armour Thyroid but I do beleve that is rather strong. Do you feel you want to try something other that T4?

[storm in reply to Kitten-whiskers]

Ahh the Linden.....was one of those things where you see it advertised and the actual process is hidden...therefore I didn't go there....I was supposed to get help, but cancelled as I know the thyroid has made me worse, so no point in trying to front it when too exhausted and weak, dizzy etc..

It was feeling so weak and unable to walk plus hormonal that I went to doc with before we knew it was thyroid.

Hmmm...I understood that people think there is some secret T1/2/3/4 in Nutri but I read lots that people go hypo if on T4 and take them....and some lower T4...levo, so worrying, lol...mostly the bit about tremors shakes heart symptoms again...why on earth can't the truth come out...obvs medical profession know about the products, always about companies and money even with pharmaceuticals...they run the docs...hence pushing certain meds.

See I am worried about trying T3...as it can defo affect heart etc...muscle wasting if not active or taking protein diet etc etc..so it sounds dangerous...but also read how so many people started getting better on it...losing weight getting energy.....why though? As I am sure you need T4 for use in body...does some of this T3 revert back to T4? I am confused at the mo.

I don't wish to take T4, I am scared to try T3 but may do...I can't live off nothing, as my Tsh was over 100, might have been any large number as machine only went to 100 and T4 went to about 5....so could totally pack up...antibodies went up ten times in a year...from 240 to 2500..............aaarghhhh!!

I gather Armour is hard to balance and with side effects...and irregular content..plus not exact replica as animal is different ratio T4 to T3...so I read somewhere...

What else can I do? They all say irreversible, once thyroid gone it's gone! I don't wish to believe that...bones can heal etc if correctly supported...how can the body not heal a thyroid, main workings etc....I am in my forties....people, even teens are suffering....what the hell is it that is doing this?

I have in the past searched and come across New Zealand products bovine....I have no idea what to take...I can't have more symptoms....won't cope and it is unknown how bad I am going to get in the coming days....that's two where very beyond exhausted so far.

See the other thing is that as the last two blood tests the T3 was in range...but T4 low on last one and first one, (ok in middle lol) but TSH was mega....that says to me that TSH is so high to tell gland to make more T4.....which converts naturally to T3 no prob, it's just that I don't have enough T4 and as the antibodies (TPOab) went up ten fold....that also looks bad...I will need to feel better than this to go thru tests...doc was only gonna do standard thyroid this time...I can't make it to docs like this...lol. XX

[Kitten-whiskers in reply to storm]

Hello Storm,

It does seem that the T4 is not being taken up as it should, this is why you are experiencing all those terrible symptons and that is why your TSH level is so high - this is what happened to me. When the T4 is taken a large amount of it is converted into T3, T3 is the one that does most of the work. One thing that docs seem to disregard is the importance of vitamins & minerals. What might be beneficial is if you ring your GP and ask them to check your VItamin D, B, Iron, Magnesium & Calcium levels (I don;t think they will check any others) They will prescibe a Vitamin B complex, Iron & Vit D - so if you have the excemption card then you wont have to pay. If stress & Illness has gone on for a long time then vitamins/minerals are very important - Also from a receptor point of view.

I came to the same conclusion as you - that people do recover on T3 and that is why I am going to go down that road, No more T4. It is very understandable to be scared as I am but if we continue in a circle then nothing improves - I remained in that circle for about 18 months and things were getting worse and worse.

I have changed direction and am better for it, Do you feel well enough to do a bit of reading - Their are a couple of books I would recommend (you can get from the Library) they will give you alot of hope - they did me and that will relieve some stress and they prove that how ever bad things - we do recover and get better x

[storm in reply to Kitten-whiskers]

Hiya, I hate to think what damage the T4 may have done...I hope to be ok...as you discovered coming off T4 is a bit hairy....already for me...not much longer for you...5 days did you say....Without having tests to prove (my error) then I can't say whether the scores were anywhere near back in....by the time I do get tested...assuming it is off my own back...lol....some of the T4 will have gone..I guess...

The doc failed me on Vit d......they only checked B12 and folates iron last time and said they were ok. When I tell them I need others..I get fobbed off again and again. I won't give up, but they will only do what they will do.

Is the receptor issue not one where the antibodies have eaten a hole in it so to speak....is that what the issue is? Then I read TSH gets further in and causes damage.

2011 I was diagnosed so also been a while....horrid, and I still can't cope with a life on meds...so hate it...but docs thought I was being fussy....when they find out I am off meds...they won't be happy either...

I don't really read books, as it is a minefield...I look on here and other websites but sooo complex and a lot of it is opinion of person who writes it...I've tried to grasp citations as well....I got the selenium test info....tried to keep having selenium ie tomato, brazil...etc in diet...but that proved a failure for me, meant to lower anti body but raised ten times for me.

I can't go out at the mo to get to library, though would be good idea

Lots of people on net indicate can get better, lots say no way....soooo hard isn't it?

I simply believe prolonged stress, poor finance, poor diet did it to me....you'd think go back and do it right and heal...wouldn't you...or at least eat proper.....maybe it is lack of aminos? Protein? If the body hasn't got the ingredients it can't work properly....everyone says avoid iodine, or watch it rather....yet you'd envisage need loads to cure. XX

Thanks so much for you hard effort when poorly too XXX

[Kitten-whiskers in reply to storm]

Hello Storm,

I do truely believe you will get better, I have read alot of case studies & people who have been in a simillar way as you and me & now they have their lives back. If you get the correct meds, vits etc then your body will respond. Why do you think damage has been done? the TSH levels changes all the time, how is you TSH tested, do they test anything else - like reverse T3 etc?

My TSH goes from sky heigh to minus figures and my private Dr has said not to pay to much attention to these as lots of things affect the level. Depending what caused your thyroid to fail in the first place would depend on the treatment for it. The receptor uptake is very important and that is why I keep mentioning it, if the receptor uptake is sluggish then any form of Thyroid medication will not go in proberly and will build in the body making you toxic. Their are lots of things we can do to help - and as I said last year I was in the same situation as you but now I have improved alot, I am still very poorly and how bad I am depends on what medication I have taken. Please don't give up - things will get better - I am always hear to help & offerer support if you need it and am studying a fantastic book purely on T3 & Supplements and I will happily pass on any helpful information to you

[storm in reply to Kitten-whiskers]

Hiya, thanks for coming back here

It's been drummed in permanent meds for life, can't cure it, nobody knows how to turn auto immune off etc etc....so once we know we have it, we worry ourselves sick....probably.

They caught my TSH in 2011 77, 2012 8 and 2013 >100 so whether it went back normal at any stage, I don't know....but I understand the antibodies keep eating a hole...so to speak and the TSH at high level burns more damage...so thyroid eventually totally destroyed...so I read.

This is day three without meds and part of me feels better...part of me knows not right, but somehow better than when on T4.......but as we know, the T4 likely hasn't left the building yet...so if gland can't make more, I'm doomed hahaha...eek!

So just to recap, the T3 made you ill, then you boosted adrenal a bit? Took vits and then it started to work?

Or is there some way to try to heal receptors, I need to look more up but so so tired still.....I keep getting like confused, words coming out of mouth muddled and thinking strange...a bit dizzy, defo couldn't go anywhere...but legs slightly better, in fact without the dizzy and confused feel, I'd almost have energy...LOL, but guess it is the end of T4 leaving..or not overloading where it shouldn't be.

I asked docs to test RT3 and got the answer...they work it out by the ratio...or something between T3 T4, so nope they refused to do it.

They did an ESR, it tests for inflammation anywhere in the body...it came up positive....but doesn't show where...

I also have pin prick petechia and some cherry angioma that came up before we knew thyroid gone.

This could be a sign of something else....docs don't know, they tested clotting etc.....full blood counts....hormone...all ok....apparently.

Not to go into finer detail but it appears 4 months on Levo alleged low dose has managed to cease or badly delay monthly, ok I am 43 but still told before I was too young for menopause and I have read others have gone to menopause etc.....

So have you read any T3 warnings, I truly don't know whether to ask for it...I was asleep til 6pmish today...going to bed mid morning again....grrrrr. XX

Thanks for all your help, very grateful XXX

[Kitten-whiskers in reply to storm]

Hello Storm,

I know exactly how you feel, last year I couldn't do anything either - so confused and always so tired etc. with regards to menopause it is very plausible to go through it early with the Thyroid condition, Do you think that is the case? I am 32 and have been using progestrone cream to see if I get improvement from that.

T3 is powerful and needs to be understood to get well (it seems) and it is not as straight forward as taking a tablet every day, it needs to be built up very slowly - If you have to much it really is terrible, bearing in mind it is said to be at least five times the strengh of T4. This is why I got the book - if it is used correctly people do seem to get well on it. Has your blood sugar levels been checked and also glutton (these can play a part in the receptor uptake) What needs to happen is for your receptor uptake to improve - then Thyroid meds will get used up properly and not get stored in the blood - this is why blood tests are not reliable - they measure the amount of Thyroxine in the body so if it is just in the blood stream not going to the cells then that is what is being picked up, giving a wrong picture of what is going on. Their are lots of things we can do to improve receptor uptake and I sure we can get you well. I am half way through my T3 book - which covers the receptors, vitamins & adrenals - once all these things are corrected things just fall into place.

[storm in reply to Kitten-whiskers]

Hiya, hope you aren't too bad today...haha, all this typing back for me mustn't help

Well I read the prog cream helps some...but then the docs said hormone fine, so not used it, however they will realise hormone now not ok, since using Levo, so far apart from timing, totally missed now...which clearly isn't right. They guessed menopause would be in my 50s and whatever the previous tests showed, they said nowhere near.

Blood sugar was ok, they haven't done gluton, I know they will if asked, I lived on bread for some time as main food...couldn't afford much else..that is why I thought reverse the diet etc...but nahhhh it doesn't work like that...or may do in years..LOL but think the damage is done before that. I try to cut out bread/gluton and it is really hard, I have tried the gluton free stuff and it is totally unpalatable....too dry to swallow.

Gawd, everyone seems to sell it as dangerous levels ie high TSH with low T4 etc...

I was struggling last night with breathing sensation and I am sure it is when more tired...even if that is 8 hours into my day...either that or adrenal kicks in or maybe a suge of TSH or something...

I shall try and read on receptors, I was struggling to understand a lot of stuff on web, very in detail...need to be a scientist. XXX HA

[Kitten-whiskers in reply to storm]

Hello Storm,

It is no problem for me to e-mail you, I am always happy to help, it is nice to have a conversation with someone who is going through what I am, It has been very lonely and I felt like I was the only one suffering to the extend that I was, One doctor told me I was from another planet. I think with your confusion it makes things very difficult, we need to get some improvement going and once the confusion clears you will get a better understanding of whats going on. I have had the struggling for breathe today and it is terrible, i also get that when I have overdone things, or got stressed out. As I am only half way through my book I haven't been taking much T3, My receptor uptake is very poor and thankfully this book points out what to do. Two things that really helped me when things were really bad was light exercise (that made the biggest difference) and yoga (on my better days) Both of these things are suprisingly helpful - but it is important that it is gentle and never over due it, Do you have an exercise bike? I started by doing 5 mins walking a day and finally got up to 20 mins, but I didn't have the dizziness that you get (thats why I suggested the exerise bike) If you do yoga _ it is easier when you are fresh out of a warm bath. Please never over do things - that really doesn't help xx

[storm in reply to Kitten-whiskers]

Hiya, I am also sat here with the struggling to breathe again, so my theory that it happens in the early hours, after being up say 8 hours....it is early...it might be I have no T4 or T3 working or it could be bad anxiety caused by thyroid.

Yep the docs mentioned hypochondriac (spelling) to me!!

We feel like deathly scary symptoms and don't know what will happen......last night I had to say to self, well I've lived 5 mins or 10 mins since the height of scary breathing...so maybe that means I am still breathing...but it is horrid....I was trying to do a bit of dinner....very hard, but then eating was harder. Just felt like no energy to eat.

Can you stop start T3 then? ie a bit different to T4...does it lower TSH or is it just that it adds T3 into system...

I mean you can't take the odd T4 as it suppresses TSH, I was thinking you'd get a bit of both worlds, lol...I wish I knew where I was at now...after just stopping meds. There isn't a urinary or saliva test reliable and cheap and that only shows in different score to what hops labs do, I think. Plus it just shows excess on leaving...lol. T3 and T4 only and not TSH, as far as I am aware....coz blood tests and me don't go, but I won't make it to doc or thru test in this state...

Thanks for the exercise tips.....I was scared that trying to exercise would use up the T3.....then the body will fail as is doing to make more quick enough and that'd worsen things...good logic hey....but I was better than this prior to March....I was having the odd cider...smoking cigarettes..and managing to get to the odd non busy music night at a particular public house, the only one I was comfortablish at...seeing friends..getting hugs etc...which eased things I imagine, more than anyone would know...when you are a loner, agoraphobic and in this state....the reason I went downhill was low body temp, long winter and I ceased going to that night...so either coincidence or the music and hugs helped....I can not stand talking to anyone, I get real uptight and anxious, but sitting down also does this...I just went in and out...sat outside in the air...spoke to people then wandered to another spot...for a couple of hours...so either I was going downhill anyway....or it was stopping that one night, but I was with nr enough hypothermia.

If I can get the balance and breathing to ease in the coming weeks..and not too cold by then, I shall aim to see if I can manage a couple of hours, but the ones I trusted to give me a lift, turned out to be slimy...hahaha, will need to trust someone. I never have people to house either....it is hard, I don't want people round, not even family. XXX

[Kitten-whiskers in reply to storm]

Hello Storm,

You are really going through and having support & hugs from friends & family to make a big difference. Docs are really no help to us and it's easier to brush it under the carpet and say it's all in our head but their is a growing number of people in our situation. With the gentle exercise the reason it is so benefical is that it raises the metabolism - and you will be suprised the difference that makes, I know I was but please don't over do it, that can upset the apple cart so to speak. I only take quarter of a tablet of T3 a week, that provides much more benefit than T4 but it still isn't going in proberly - thats why my TSH level is high. To reduce your TSH then the T3 or T4 has to go in to the cells fully. Do you have stomach problems, this is also a clue as to whats going on. I completely understand with you wanting to be on your own as I was the same. One I improved I tried to keep myself busy, If i didn't i would focus on my symptons and get stressed out and upset (making the situation worse) I have felt so bad at times I though my life was over and that is terrible - It was clear to see and the doctor did nothing - It really is appailing xx

[Heloise]

Very puzzling, indeed. I agree that perhaps adrenal disfunction is causing your Levo reactions. You may be getting an adrenal "rush" to compensate for your lack of thyroid. I don't think that the thyroid causes a thyroid attack. I think it's more of an immune issue but really can't figure what is going on. Dr. Lowe did a lot of research and this page has many links at the top which you may find helpful (I hope). web.archive.org/web/2010122...

[storm in reply to Heloise]

It isn't straight forward at all, and so I don't know what to do for the best but can't go on like this, docs just say typical hypo, need more meds, which is not helping, altho only on 50mcg, it was bad from 25mcg tablet one disabling...I shall have a read a bit later, many thanks

[Marz]

....also Ferritin Iron Folates and B12 along with the VitD.....all need to be high in the range for an efficient turnover from T4 to the active T3. Also reading up on Hashimotos would be a good idea - there are some excellent books you can read - which give very detailed strategies on fixing the gut - where the beginning of the auto-immune situation begins its journey. I have Crohns and Hashimotos so am speaking from experience albeit I am not medically qualified. Healing the gut is so important.....

With anti-bodies that high you are bound to feel unwell - anyone mentioned Selenium ? VitC ? Just read about the practical things that can help you on a day to day basis....and suddenly life becomes brighter. As Hippocrates said - Let food be your medicine ......

[storm in reply to Marz]

I don't mind personal views and experience, it honestly does help and I don't hang on to literal, I know we are all different etc, so big thanks! I lived on bread and cereal for a long time as main food due to budget etc...cutting out is on list but still hard...I tried free from bread and so unpalatable...haha.

Yes, now selenium....I took one ACE once and had mega side effects with that....I started on multivit last year but read this and that shouldn't be mixed etc

I started on brazil nuts but unless it is my imagination, a couple if those randomly make me tired...weird! Now I know selenium can lower iodine if it is lacking...vice versa....but I suppose I need to do iodine test really, why is selenium having a strong effect..I haven't given up, I still eat the odd brazil couple times week...and selenium in some foods...

This will sound really bad and I don't know why.....I was having the odd cider and stopped totally march, not alcohol problem or anything...just social or even at home...then my skin seemed like it died...badly shrivelled and drier than had been....my warped head wonders whether something in cider was helping me. I haven't has any since but defo coincidence. This was before taking Levo by the way, I thought change diet....cut out toxins....I joke.....a cider a day keeps the doctor away....ha.

[storm]

As a general question and if I stop the 50mcg as a trial to see if I feel better off it...although previous TSH >100 was worrying, along with symptoms heart, pins needles etc...

If I decided to try T3, does that have the same or worse kind of side effects, if there is some reason why I can't accept meds....isn't it a stronger form of T4 but with the extra molecule....OR is it better tolerated where there might be a tendency to med issues...I am just trying to establish what to do, ask for T3 to add to T4 which is clearly making me worse on it's own...and may still be bad for me even with T3 added....

I read somewhere T3 on own can cause muscle wasting so you need protein diet and then that is bad lifelong.

Or with a TSH of >100 but obvs did lower itself last year...can people survive on healthy diet without snuffing it....sounds daft but when heart symptoms and pins needles in tongue etc..(before levo) I am worried. The antibodies were 2500, but if trying to heal the gut and taking selenium, can auto immune be reversed OR is it simply helped a little.

Major decisions for me and thanks everyone, just want to be armed or at least an aim if facing docs and possibly endo........

[mandy72]

did you get worse on the change from Wockhardt to Actavis? the heart breathing and throat being full?

reason i ask is on started on 25mcg wockhardt then when i went up to 50mcg the chemist gave me actavis

was on 25mcg for 6 weeks and just felt normal hypo and since going to 50mcg my breathing has got terrible im having awful palpatations and my oxygen levels are fluctuating

i stopped taking the levo wednesday as i was scared they were killing me

dr agreed it could all be a side affect but even after 2 days i feel like im dying

[storm in reply to mandy72]

Hiya, I was at a severe level of hypo/hashi prior to starting Levo, so bear in mind when comparing and before taking any levo I was having anxiety/panic thing for years, when they tested thyroid it was ok............then more stress DID cause the thyroid to 'go' and the very last I recall before going on levo was some palps type thing, some thud in heart whereby I get a catch breath sensation and I have to gasp to correct it...whilst feeling like falling....so that was happening before Levo.

My first Wockhardt 25mcg affected my spine and legs....one tablet was enough to make me beyond capable of walking three aisles in supermarket. I felt suffocated and panic. But not normal, much worse.

I went to 50mcg Actavis after a week and was on that for about 6 weeks when really noticed strange effects...the throat suddenly locks, you can't swallow...you can't take a deep breath, feel chest clamped........I have never had asthma but wonder if it is similar...you try to free up the throat, I have to grab hold of trolley in front of me if sat down...its that strong a sensation...I have managed to get to kitchen for water...to force swallowing..but so scary!

Now, all the time I was noticing pulsating in chest and throat especially...it is all day every day, like you can feel blood pumping thru veins in throat, it is horrible, it is NOT panic, it is underlying and uncomfortable. The chest palps are NOT panic either....it is felt around heart , sort of juddery, I can have this going on without the above throat cease or the falling episodes, those appear to come with a major rush/flush, a wave where suddenly you feel like collapse...but it passes likely under a minute.

I had wonky head sensation with Actavis and went back to Wockhardt, so 2 tablets of 25mcg, it seems the Wockhardt affects lower body more, the dizzy is general, not head.

Both tablets, I had heart/throat palps......which doesn't clear within minutes like a panic attack might...it comes and goes worse or not....actually worse when tired.....my head doesn't tell me I am tired....it is heart palps/flutters/shudders then I know I am tired...and that is a very short day, any day...not normal at all. So could be undertreated, but this is why I am asking if not suited to Levo...the docs will say up it, they already told me to go to 75mcg but I am not convinced I can take it.

I have had episodes of tinnitus as well....

I hope this helps, I have been touching on researching T3 as I really don't know what to do....it appears people on combination MIGHT do better.....but it also says people need to exercise and take heart protection diet and be strict, so I guess even T3 might be a risk factor.

I have been 50mcg about 4 months and defo got worse....but the risk of not being on it is serious...aaarghhh, what to do

[kimomac]

Don't stop Levo immediately it will cause more problems than it's worth, it is something that you have to be weaned off of. It is likely that you need a higher dose given that your TSH is far too high and the only way is to increase the dose gradually in line with your doctors advice. Do as the doctor says and report back to him/her regularly.

[storm in reply to kimomac]

Thanks, I have now not taken yesterdays before seeing this message, so in a pickle...as not sure what reaction...I did think about weaning off but not sure on how precisely....I did read somewhere to just stop as it takes time to leave body....however after not taking one day's 50mcg...the legs felt better (only around house) but after some hours...head and vision a little weird...maybe tired. I am hoping gland kicks in, otherwise I am doomed....is there any info you have seen about stopping. It is such a vast area and what to do. This is where the docs don't help as they don't know.....I mean they (several of them) say levo is exactly same as body, so no side effects....how wrong!

[RedApple in reply to storm]

Hi Storm,

I first want to make it clear that I am NOT advising you to stop taking your thyroid medication without your doctor's approval. That said, as I understand it, there is no reason whatsoever to 'wean off' thyroxine. If you have some T4 'store' in your body, it will gradually deplete by itself. If your own thyroid is going to 'kick in', it will do so when and if it is able to.

Please do take care. I know from personal experience how easy it is to slip down the slippery slope when reducing and stopping thyroid medication. The word 'insidious' is so very very applicable to thyroid dysfunction.

[storm in reply to RedApple]

Hiya many thanks, well as it says on the instructions...don't worry if you miss one dose.....well as I missed last night, I confirm the legs felt a degree better, but then I felt so so tired..and this is within hours....I am sleeping erratic hours, just got up, visions a little bit like eyes just want to close, feeling a bit different....but beyond exhausted considering that was one lot missed.....so never underestimate the strength of levo T4 peeps....

Now I am worried, because I did read very little before deciding to do a trial off levo, but the one thing I understood was it would gradually come out.

I am scared gland won't be able to kick in....and I wasn't sure which way I was going to go...the docs won't be happy and I don't think I am going to survive off anything.

The confusion and not knowing what to do.....I just know that I expected to feel a some effects after a number of days off levo...but day one seems I am so tired, what will pursue? XX

[bcdgn]

Dear Storm

I felt like crying when I read your mail. I am just in the same boat or have been for at least 15 years. All the same symptoms. Stared at 25 mcg when moved to 50 mcg felt like I was dying. Stopped them for a while, Blood tests were normal for a while, then I gave up smoking and thyroid really took a dive, so I had to go back on Levo again.

It was awful, couldn't stand the throat closing up. They tried me on various types of Levo but all had the same effect. they wouldn't send me to an Endo because they said he would only put me on Levo again.

So my GP is trying me on a T3 drug called Liothyronine. I tried the full dose of 20 mcg and felt the old symptoms again so I take half a one per day. the blood tests have improved but I still get mild symptoms. the overall symptoms of memory lapses and depression is still there though. I feel as though I will never be myself ever again.

I was talking to an old lady yesterday and mentioned the difficulty I had with the drug and she told me she's been on it for years and has no trouble at all ......looking at me like I was some mental case....... Just what I needed

I wish some boffin would find a proper relief of cure for it without any side effects! My thoughts are with you though, you are not alone!

[storm in reply to bcdgn]

Awww bless you, thank you too! Yes, people were telling me no effects which is how I conclude that even if undertreated, that it isn't right....I have given it 4 months for body to adjust and tried two makes.......

There is info on internet...as usual that T3 is way to go..either with T4 or on own...but there is also info on how pharmaceutical run doctors etc...haha...and if they don't prescribe T3 a lot...then business is down...but I need to be serious, decisions on T3 alone or T4 and T3 is too hard for me to make...then again I can't travel up the country to try Armour...ie see top docs...

And then what about online bought 'non hormone' supplements as they deny content...dodgy as might be...is there a slim chance they'd work, lower antibodies and with stress gone, might recover...if treat auto immune as best can...ie healthy food, rest...

Turmoil for us both, but I am definitely struggling in a different way today and my last does should have been midnight and I have just got up, as I slept morning to afternoon....who'd have thought missing one dose would make me this tired...

I hope the T3 works for you, it is supposed to but I read too much does make heart faster...it says you need to do aerobic exercise to strengthen heart on that med, which lowers heart rate...but it also says people can have low heart rate which refuses to go up with exercise....lots to work out and I defo wish someone would crack this and wipe all the garbage off the web Take care XXX