Has anyone managed to overcome an aversion to thyroid medication?

I have been absent from 'our community' for some months now due to my husband being in hospital and various other pressing matters. Things are easier now but my thyroid issues have not gone away. I have a great GP who has tried everything on my behalf and I have seen a NHS endo and a private one and also Dr P. However no one has been able to help me overcome my aversion to thyroxine (which I took for five years without any problem),T3, Armour and more recently Erfa. Each one, to varying degrees gives me dreadful side effects including terrible headaches, nerve pain in my face and gums, anxiety and shaking. The effects are so much that I cannot take the medication and as a result my TSH is currently 20. It seems that I cannot have any quality of life without the medication but but cannot live with it either!! If anyone has experienced this I should like to know how they managed or if anyone has any suggestions I would be happy to try anything.

Here's hoping - Flo x

34 Replies

  • Have you tried anything with a lot less fillers in it? or have you, or your doctors, ever looked into the filler eliment at all?

    Moggie x

  • I have been prescribed liquid thyroxine which in fact produces the most extreme symptoms. I would assume that this is probably the most 'pure' of the meds I have tried - is it not?.

  • Just looked up the fillers in the liquid thyroxine and they are almost as bad as the tablet form. Have you every tried lactose free levo (the Aliud brand).

    Sorry just trying to throw a few ideas at you.

    Moggie x

  • Hi Moggie

    Is this lactose free levothyroxine available on nhs prescription? Cluster replied to my question asking me to contact you. Any advise or info would. Be great

  • My goodness!! My pvt endo suggested that my 'tummy troubles' could be due to lactose intolerance and I have been following a lactose free diet for some weeks - tummy best it has been in years! I hardly dare hope that you might have hit the spot. Is this brand freely available? Would I just ask my GP for this? Can you sense my astonishment at your reply? It is certainly worth trying - thank you!!!

  • I use the Aliud brand myself and feel the best I have in months, which I put down to a lot less fillers. Have PM'd you with more info.

    Moggie x

  • Thank you so much. Don't know how to access a PM - Sorry I am out of touch. Can you let me know please in case I don't manage it myself. Thanks again - Flo xxx

  • Hi Moggie I struggle with synthetic t4 and have just had terrible side effects from a trial of liquid t4. wondering if you

    could you pm me the info re Aluid please

  • Look at the white envelope at the top of this page in the green bar and it should have a number one on it in red. Press the envelope and it will take you to the message. Click on the blue heading, which is "lactose free levo" and it takes you into the message. I'm going to bed in a minute but will wait until you let me know if you have got the message.

    Moggie x

  • Done! Will be onto this tomorrow. Thanks so much. Sleep well. Flo x

  • If you need any more help just shout.

    Moggie x

  • Maybe you need to check your b12 levels as I have had one hell of a journey was on thyroxine 50mcgms anxiety tremors,headache nausea,pins & needles in hands,aches & pains,Bp sky high,insomnia ,breathless,memory loss.My Tsh 1-2 thyroid antibodies up.Stopped thyroxine thanks to pharmacist Bp came down 2mths later but all other symptons continued had 2 x brain scans& thyroid Nad .6 mths later diligent Gp told me Adrenal s low cortisol,liver & gut inflammation genetic b12 mutation deficiency.Thyroid levels haven't changed.taking methyl b12 spray.I have painful feet now told probably nerve damage.Good luck keep searching.

  • Marylyn... you have just described my experience to a t.... I was on 50mg thyroxine.. For 3 months when all the same symptoms started... most have gone now.. with alot if hard work and vitamins.. but my feet are so painful.. in fact all of me aches.. but feet are a real problem... have u had any tests done by your doctor to work out what's wrong with ur feet? I think my started as adrenaline surges.. so have myself convinced its adrenal gland related but endo says my adrenal glands are fine... would love to know more about how your getting on as your the first person ive read from with same story as me :)

  • I have been told since not to take cheap brand thyroxine I have also had eye prob.2 bloodshot eyes,corneal ulcer been checked by eye specialist.will seeGp Fri will ask again for neurologist refer.I have had frequent falls as well.I believe you have to do your own research .

  • Have seen podiatrist says its Achilles tendonitis,& fascialitis.Have feet strapped doing stretch excercises ice packs,walking in ortho heel sandels not much improvement .Physio thinks nerve damage.

  • Just wondering.. do you have alot of fluid retention as well particularly lower legs?

  • I have noticed particular l leg on top of tibia not ankle.Since taking a good quality multi mineral it has lessened.I take magnesium,Melantonin 1mg before bed.vit c 1gm,Vit b complex,b5 for adrenals,salmon oil,zinc, Vit d ,co10 enzyme,Lyprinol for feet inflammation.make sure vitamins are good quality like Neolife or blackmores.

  • Thanks marylyn... I think I will try a few of those supplements.. I just read an article on dr mercola.. which says that sublingual b12 is the best because b12 molecules are very big to absorb and seems to absorb best in the mouth... interesting :) lyprinol sounds interesting.. any tests I have for inflammation come back high.. so I know I have inflammation somewhere.. could be constant cough or bad bowels... do you ever feel like you should be rubbed out and re-drawn :) lol.. thanks for sharing :)

  • I have never felt this flogged just have no sustainance exhausted after cleaning or vacuuming.My Hb is okay it's just adrenals b12 & liver must be making me crash.

  • I can relate to that.. my house has been a pig sty the last two years.. but its just too much effort to do anything other than move mess.. I would be out of breathe if I tackled hoovering too.. I think adrenals are the key... years of stress without even knowing it.. if only there was a decisive test to show adrenals were running low... endos shud be helping us more.. they should be allowed to tell us if we look low.. even if it is in "range".. my adrenals have improved though with rest and vitc so im grateful for that.. but I can tell they still struggle to deal with minor stress... wouldnt it be nice to go to a retreat and have specialists spend a week and fix you.. without having to try to work it all out yourself :)

  • Your so right originally I had to contact thyroid foundation to get advise.I was asked had I had thyroid u/s no I said as all drs had said its stress,anxiety as I was working as midwife in short staff workplace.great to chat

  • Are you not having B12 injections? Only way to reverse B12 deficiency nerve damage I've read.

  • Hi, I am having the same problem! I have tried several brands of thyroid medication (including hypoallergenic) and my body does not seem to accept any of them. I am at the point where I cannot even tolerate 7mcg of Erfa i.e. 1/8 of a grain!!! I have come to the conclusion that my adrenals are very very fatigued as taking the thyroid medication seems to make my adrenal type symptoms even worse. I am not sure what the answer is (adrenal support does not seem to help) but I have read some accounts of people who need to take miniscule amounts of thyroid medication (e.g. 2-3 mcg/ day) and build it up gradually as their body recovers. This is my next plan of action!!

  • The pvt endo I have seen also said that this is one way to tackle the problem but I have tried that and with the T3 the reaction took longer to happen but unfortunately after a few weeks I was back to the same old problem May be you will have better luck - hope so. Flo

  • Hmmm... interesting. Have you tried the CT3M as recommended by Paul Robinson? I am also thinking of trying this for a short while to support my adrenals, along with vits + diet + sleep, and then build up the thyroid meds. The other suggestion that I have received is DHEA supplementation, as mine is below range, but the jury is out for me on that.

  • Yes my doctor has suggested taking a very low dose and building it up slowly.. I have refused to.. cos im so scared of all the horrible symptoms coming back... will probably have to try it though... maybe once my vit d deficiency and low blood count is resolved.. it seems nobody pays any attention to weak adrenals.. and yet it makes so much sense.. I took large amounts of vit c and in bed for 930 every night to heal mine... it has helped with symptoms :)

  • That's great... are you now taking any thyroid meds?

  • Im not taking any thyroid medicines... and my tsh has lowered a bit.. but t4 and t3 still low.. and body temperature is low.. I am tempted to try the ct3m protocol.. but need to read more about it... I keep thinking there has to be a simple fix for this thyroid problem!! My granny ate dulce every Friday.. liver once a week.. drank cabbage juice.. and had half a lemon jn water every morning.. . walked for hours everyday.. her whole family had thyroid problems.. her two sisters had goitres... gran lived to 86.. but always had those chest pains that mimicked heart problem's.. when she died hospital said it was her strong heart that kept her going.. (it was cancer that got her in the end) knowing this really eases my mind when I get the chest pains and racing heart... so I guess I want to try to find an answer, other than thyroxine.... especially when I read about how so many people dont get better on thyroid medication.. :)...

  • I agree... I am taking a very low dose of T3 only at the moment - literally crumbs. It does help and it's encouraging to read that you had adrenal improvement with basic lifestyle changes. My aunt also has thyroid disease but has fared very well on levo alone for over 30 years!! Just goes to show how different we all are!

  • PS I was also getting the palpitations and weird sensations in the chest. They have eased off since I started the T3 crumbs.

  • That is encouraging to kmow the c3 is helping you.. I guess I am scared to take anything in case I become dependant on it or more importantly in case I become seriously ill like I did on thyroxine.. at the momemt I am able to go to work and cope at home.. cant do any exercise or I would be wrecked.. but I couldnt go back to last year for anything.. strangley before I had thyroxine my only symptoms were sleeping alot and fluid filled eyelids every morning.. how I wish I could go back to those symptoms :) but yes.. I think vitamins are tje biggest piece of the jigsaw puzzle.. for whatever reason we become deficient.. I am intrigued about that girl who took whey protein and has improved her health dramatically.. There may be something in amino acids? I read a bit last night about how she believes it is genetic.. I may buy her book.. dont you find its just so difficult to take all the supplements you think you should be.. jeepers u would never be done popping pills all day... I am just thankful that I am not suffering as much as some people are on this site.. but for all I know it could be early days for me... so I must keep looking for answers... (im gonna have to try t3) has your body temperature improved since u started using it? Sorry for my ramble.. heads all over the place with ideas :)

  • I will send you a message to talk further :-)

  • Hi flo this is very interesting! I too have the terrible side effects similar to yours and unwanted weightloss!!! Have been on just 25 levo since before Christmas and feel so much better despite a tsh of 47.73 and T4. 4! should be on 150 levo. Gp can't believe I feel so much better like this and I've told him I can't go back to feeling like this again!! Like you I don't know what to do and just waiting to see an endo! These fillers they are now using must be the problem! I have never been great on levo and been on it for 12 years but in the last year it has been far worse!!! I'm back up to the right weight already and just not prepared to go back down again! There seems to be loads of us like this, you sound like you have had a good doctor which is good! Will keep you posted when I at last, see an endo! All the best.

  • Hope your endo is helpful - my first NHS was not - very flippant - recommended liquid thyroxine which was a fortune and I reacted the worst I have ever done! I am currently waiting to speak to my GP about prescribing a European lactose free thyroxine as my pvt Endo suggested a lactose free diet which I have done and my life long tummy problems after only a few weeks have disappeared. The point about this is that I now know that all the meds I have tried contain lactose! Could this be the key! I can only hope!! People on here have mentioned the fillers in tablets before but I don't think i realised just how much affect they can have. Just a few thoughts that may be of help. Good luck Flo x

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