Long term effects of just not taking the medication ?

So, am now so fed up with the GP(s) being unwilling to help me out - and being unable to pay for more private consults - I feel that I am at the stage that I just don't want to bother with it all. To stay off the meds - and see what happens. Have been off the Levothyroxine for 2 months now ( on doctors advice ) as I became covered in a horrible itchy rash . Not that she said was convinced that the Levo was responsible for it - even thought it came up within 8 days of starting on Levo !! and I have never had any rash before... So after 8 weeks off the Levo - rash still angry and red - but chronic itching has stopped. Rash is leaving nasty scars all up my inner forearm and all over feet and back. Other GP in practice unwilling to test me for allergies - refused to test for T3 or anti-bodies in last weeks blood ( even tho I have Hashimoto's) - so after 8 weeks with no meds do not know what my antibody levels are....

I guess my thoughts are : If I need thyroid replacement - but am unable to convert - or am allergic to synthetic T4 - and just don't take anything at all - what long term effect will it have on my health ?

If I will just continue to feel dreadful - maybe that is better than feeling dreadful AND having all the stress of dealing with the stress of GP's and hospitals ?

30 Replies

  • OK. Clearly I got out of bed the wrong side this morning. This is beyond a joke. You're the patient. It's your GP's JOB to find out what is wrong with you. That's what they are PAID to do. That's what they are, allegedly, TRAINED to do. It's what they have a BUDGET for - spending on testing and diagnosing.

    Write to your MP (and send a copy to your GP surgery).

  • I seem to get out of bed the wrong side EVERY morning Rosetrees ! I live on the Isle of Wight - and to be honest - our MP is a total waste of space ! - and I know it would be absolutely fruitless writing to the GP ...have seen all 5 now - none of them give a damn !! May just try changing surgery. Without sounding like a total big-head..I am a professional - bright woman. I am not intimidated by anyone . I am like a dog with a bone - and will not back down if I know I am right !!!!...BUT... this one has just about knocked the stuffing out of me. Have now seen all 5 G.P's at the surgery. Have taken myself to A & E and paid for private consult...I feel like a total hypercondriac. I am made to feel stupid by the G.P's....every time I go back about the rash - it's almost the look of " oh not her again "...they berate me for quoting anything that I have taken from Googling - or forums....the Private Endocrinologist even said...And I QUOTE " The trouble with these forums is that a lot of the women have a 5% Thyroid problem with a 95% mental problem " !!!

    That is the kind of mentality I am dealing with here. ( yet I'm the one left feeling like an utter fool ! ) After years of struggling to lose weight - the GP initially said at the Hashimoto's diagnosis " now we know the reason for your on-going weight issues"...but after just a few weeks on the Levo - and watching my diet in the hope that it would help my metabolism - I had PUT ON almost a stone !! ...Went back - GP said

    " Levothyroxine is not a diet pill or cure-all for weight loss - It won't make you magically lose weight - and like wise it cannot make you put on weight - you must have been over eating - thinking that now you are on Levothyroxine - the weight will just drop off " !! ...

    I know I have absolutely NOT been over eating - I have been cutting down in the hope that the Levo will 'assist' me - by kick starting my metabolism. ?

    At the end of the day - I know it is all down to doctors taking the easy option - and watching their budget - and treating us all the same - you have Hypothyroidism - chuck a pack of Levothyroxine at you and say bugger off !

    So - have just booked an appointment to see a private hospital about having a Gastric Band - as I feel it is my only hope right now with regards to my weight - and will look into changing my GP.

    So fed up I can't begin to see ever feeling well again !

    But my twisted head says at least after having the gastric band fitted -I will ( hopefully) be slim and miserable instead of Fat and miserable !

  • I know just how you feel, doctors and Endo talk to us as if we are stupid. My Endo said"people try to make The Thyroid complicated, it isn't" it is so frustrating, we know how we feel. My GP thinks I have symptom because I read about them on the internet. Well I search the internet because I didn't feel right when my meds were changed. The pharmacy tried to say they were all the same they are all Levo. So why did I start to get symptoms. After years on Eltroxin I could tell they had changed. Sorry it just makes feel angry. Best wishes hope you soon get sorted. x

  • Thanks Kathy 21 ..yes , all the GP's at my surgery insinuate that I have symptoms because I read about them ! it's so Insulting ! Another appointment on Monday - to discuss my latest " normal " ( according to the docs receptionist ) bloods !! taking hubby with me for support . x

  • My Husband came with me when I asked for more tests, i had only ever had TSH and I wanted free t4 free t3 antibodies and he actually took blood for all of them because I had an Endo appointment not because I took my husband. But I did feel a bit more confident with him there. Best wishes for next week. x

  • Shameful. But not unusual. How awful for you. Certainly a change of doctor seems indicated. Make sure when you sign up with a new one that they are aware of the ... difference of opinion you've had with the current practice. One's notes are transferred, and if the old GPs have put comments like you quote above on your notes, then the new GPs will not be starting from an unbiassed position. You need to address that from the off, I suspect. Or even before the off! Good luck.

  • Try writing to the MP spearheading this debate? : publications.parliament.uk/...

  • I agree with rosetrees. That is just not good enough, write to the Practice Manager with a formal complaint.

  • cinnamon_girl : have already spoken to the Practice Manager ( a woman who looked about 15 !! ) I complained about my main G.P - that she is not taking the illness seriously - and was refusing to refer me to the Endocrinology Consultant - was just told " well - you can always go private " !!

  • That's not good enough. Make formal complaints in writing, remember GPs are being revalidated and any complaints will be brought up at that time.

    I've made written complaints about 3 GPs who failed to diagnose me with hypo. They wrote back and said they hadn't missed a diagnosis. I'd moved area, new GP wouldn't take any notice until I wrote a formal complaint after which time I had a meeting with him and Practice Manager. He was horrified when I told him that I'd been left untreated with previous GPs.

    I requested an appointment with an Endo of my choosing, he agreed and sorted that out. Once I'd received diagnosis from Endo, I wrote again to previous surgery to tell them that I'd been diagnosed and make serious allegations about what they'd not done, where they'd gone wrong as well as pointing out that my taxes went towards their generous salaries.

    Now taken my complaint to the GMC, not expecting them to admit errors were made so highly likely it will go the Ombudsman then probably legal action.

    We all need to shout and write letters. It's our lives that they're messing up and it's just not good enough.

  • Thanks for your reply cinnamon_girl. At the moment, even my Endo wasn't much help ( paid for private consult )...I really feel as if I do not have the mental energy or strength to start involving GMC etc ? I will see what the GP has to say on Monday - if they are still sitting back - I will change surgery for sure . :o)

  • SoozieQ - I just sent you a PM

  • SoozieQ Your rash sounds a lot like Pityriasis, I had this last summer and it lasted much longer than 8 weeks. There are different types and it took me 2 visits to the GP before they diagnosed it.

    It just appeared one day and slowly spread, was incredibly itchy and left marks when it started to fade, my skin also felt slightly numb where the rash had been. It's all gone now and no marks.

    If you haven't come across it while googling then do have a read.

  • Thank you Hypohen...have just googled images of this - hard to tell if its the same. But will mention it to the GP at Mondays appointment..Will let you know .


  • Don't go entirely on the images as mine wasn't really typical of any pictures, the first GP I saw decided it was one type and gave me some lotion which made it worse, the second GP said it was another type so gave me different lotions and antihistamines which did work but the rash still had to run it's course and I think I had it for about 12 weeks. I had it all over my body, arms, neck and tops of legs, not something I want to get again ! It would be good if it was that and you could get back on the Levo, good luck for Monday.

  • OK hypohen - thanks - have tried anti histamines - didn't do any good :o( ..but will mention pityriosis to Gp on Monday .Will let you know what is said .

    Cheers. Soozie

  • just a couple of thoughts , 1) have you ever suffered from chicken pox --- because the virus stays within your spinal system and usually emanates as shingles ] 2) if this is the problem has this ever been considered 3) I say this because I had full blown c/p when I was about 35 [ and spent 2 weeks in isolation ] and occasionally have a flare up of shingles --- and I use ' CALAMINE CREAM ' --- not lotion -- because it has an emoluent and allows the skin to not dry out ....... the main thing is there are not any medications in the cream and it doesn't dry out ....it works for me ........may well be worth checking this out as most of us don't consider other conditions when we are overtly concerned with thyroid/meds /idiot gps endos etc .....hope this helps ...alan xx

  • Hi Alan, yes - didn't have chicken pox as a child - got it full blown when I was in my early 30's...( am 49 now ) ...GP ruled out shingles - all 5 GP's have said NO to everything I have suggested...lupus - anularis granuloma - gluten rash ...everything I suggest they say absolutely NO - but are unwilling to test me for allergies - so yet again - another brick wall !.

  • exactly the same as me , the ma in law still refers to me as 'the singing detective' , may be worth trying the aqueous calamine cream for the rash I generally get it upper arms ,inner elbows and middle torso ...... and it really does help .......it can be bought over the counter ......alan x

  • If you do need thyroid hormone medicines, then being told not to take them is wholly inadequate and potentially of the utmost seriousness.

    Perhaps you need references? In which case, this very morning I got an alert email about this (ignore the mention of "neurofibromatosis" which seems almost irrelevant):

    16. Arq Bras Endocrinol Metabol. 2013 Dec;57(9):743-7.

    [Myxedema coma in a patient with type 1 neurofibromatosis: rare association].

    [Article in Portuguese]

    Sasazawa DT, Tsukumo DM, Lalli CA.


    Myxedema coma, a rare but fatal emergency, is an extreme expression of hypothyroidism. We describe a 51-year-old male patient who has discontinued hypothyroidism treatment 10 months earlier and developed lethargy, edema, and cold intolerance symptoms. He also had a previous diagnosis of neurofibromatosis. After admission, he progressed to respiratory insufficiency and coma. The prompt recognition of the condition, thyroid hormone replacement, and management of the complications (hypoventilation, cardiogenic shock associated with swinging heart, adrenal and renal insufficiency and sepsis), resulted in a favorable evolution.

    PMID: 24402022 [PubMed - in process]



  • helvella, I did read about this myxedema coma - and when I mentioned it to the GP, she almost laughed me out of the surgery .. ! and said " that is not going to happen to you " .

  • What is going on?why are we treated like this ..I too am going through the same thing ..I've a meeting with doctor and practise manager on Wednesday after complaining ...I was told I'm putting on weight because of what I put in my mouth ..by a doctor ...I've had tests x rays internal scan ..

    Bowel cancer check which was a minor operation ...and really I'm under medicated ....and nd probably need t3

    ..what is going on in this country ..why are we treated like this ? Why are we left to suffer? Why are we ridiculed ? Why are our lives being wasted with an illness that could so easily be treated..

    I just despair even time someone comes on here with stories of rubbish doctors

  • lola1956...my sentiments exactly. My friend in the states keeps saying "how lucky you are to have the NHS "..but from what I have read, Thyroid patients in the USA get treated well with decent appropriate meds - even though they pay for it - at least they are not treated like idiots !

  • Suggest you read a bit more about USA thyroid care. At its best it might be pretty good. But even when paying it is not always any better than here, in my opinion, based on reading elsewhere.

  • The other possibility re the rash is Lichen Planus. I developed this when I was very low energy wise about 8 yrs ago. At the time I was on Thyroxine, though I didn't relate it to the thyroxine and in fact it is probably an autoimmune condition and interestingly my TSH also rose above normal so I reckon the 2 things were connected.

    Anyway, it's worth googling for pictures of LP. Also I was referred to a dermatologist in the end which is what your surgery should at least offer you, though it took so long that the rash had almost gone by then, but she was v helpful in diagnosing it.

  • Soozie, you may have had an allergic reaction to one of the fillers in the levothyroxine you took. An antihistamine taken an hour prior to levo could prevent this. It may be a coincidence though as I would think the allergy should have gone once the levo cleared your system.

    There are serious and long term health implications for undiagnosed, untreated and undertreated hypothyroidism, including heart damage and degenerative brain damage.

    Perhaps you should change surgery and find a more supportive GP who is interested in sorting out the rash by referring you to a dermatologist and suggesting simple and basic workarounds like antihistamines if drug allergy to important hormone replacement is suspected.

  • I had lots of different skin conditions which all vanished when I started taking thyroxine. My doctor would not even refer me to a dermatologist. Thank goodness I met Dr S.

  • MANY THANKS ! ..to EVERYONE that has offered advice / tips regarding my situation.

    Update :

    Went to GP ( with hubby in tow )..basically said that I was refusing to leave the room until she agreed to organise a T3 test !!! My husband also pressed her on the subject - he is very insistent - but in a calm way ( unlike me !! )..she checked her online form - where she ticks the relevant things to be bllod tested - and said that T3 wasn't even on her bloods form ! ..But, she said that she would contact the lab and ask them to include T3 test on my next full bloods next week. So - now waiting for phone call from the GP surgery to go and collect the form.

    I did give her a little lecture on some of the subjects raided on here - about T3 - the latest studies etc..and how so many of us are being refused this simple test - but that ( if I have to ) I will start self medicating . I printed off a fact sheet about T3 and the benefits and gave it to her to read. !!

    Feeling a little more hopeful - but will have to wait and see. I will report back once I have more news.

    Thanks so much everyone - your forum advice and support has been a little ray of light at the end of a long dark tunnel.

    Soozie X

  • So, got a call from the 'lab guy' at the hospital ..turns out to be a Mr. Al-Bahrani , a clinical pathologist consultant. Discussed a few things with me - then out of the blue said " I am emailing your GP to issue a prescription for T3 - we don't need to do the blood test first ! Start on 5mcg per day - re-test bloods in 28 days, go from there ! - you should start to feel better soon "

    You could have knocked me down with a feather !..so he has over ridden 4 G.P's and the endocrinologist that I paid £200 to see !!!

    Got tablets yesterday - took 1st one this morning ....fingers crossed things will start to improve. :o)

  • SoozieQ hopefully things did start to improve for you after this. I also live on the Isle of Wight and have had similar treatment from GPs. I have just written a complaint to the practice manager, as a result of which they are doing a full range of blood tests and referring me to the endo at St Marys. Fingers crossed!!

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