Well that's it I'm coming of this awful poison/ levo I've had 5 or 6 tablet forms and got dr to let me try liquid levo... My god I'm worse im on my second week of being in bed exhausted with trips to the loo and serve abdominal and bowle pain /loose bowls feeling nauseous inflamed bowles server headache this has not gotten any better on the liquid levo it's so bad I'm coming off it I feel so ill the inflammation/pain/feeling sick exhaustion no appetite I want to die.. I have informed my gp of this.. Just one question if someone can tell me how long can I last without taking any medication? Just waiting on gp to get back to me.. I'm also shaking very badly 😭
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birkie
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First of all, I must say that your experience is not unusual.
When first beginnin levothyroxine many on this forum are surprised/shocked that we feel far worse than before we were diagnosed.
If you're GP does phone you back tell him that you feel so bad that you believe your body has reacted violently to levothyroxine and that you feel so unwell, it's unbelievable.
I'd try taking an anti-histamine tablet (and I'm not medically qualified). Usually that would be one hour before your next dose to try to see if it is something in the tablet that has caused you to feel so ill. The fact that you've already taken a dose it might work
You could be sensitive to fillers/binders in the tablet.
My gp knows I'm sensitive to synthetic meds I had a hell of a time on the anti thyroid meds but my stupid gp made me take them.. Upshot.. Admitted to hospital in thyroid storm because I was not responding to them I had server sickness and very watery bowls pain and very inflamed intestines right to my anus same now with levo and I don't want the same thing to happen like being admitted to hospital in a near coma like last time... Yea I reckon its the filler or ingredients I've looked at both ingredients and it could be the sugars.. I remember after my hysterectomy my consultant gave me some stuff to open my bowles think it was lactose I had the same reaction to that stuff so that gp stopped it... I'm shaking so much I can hardly hit the right letters on my phone avin to correct all the time.. I feel so unwell.. Wrong time to feel like this to.. And my endo app was cancelled to... 😢
I'd ask your pharmacist if he can source another make of levothyroxine. I must admit that levo didn't improve my symptoms at all but the addition of some T3 'liothyronine' to the T4 did. Due to the cost of T3 they've withdrawn it from being prescribed.
Thanks for the tips but I’ve tried all brands with same effects, nearly ended up in hospital with heart rates of 140. Pains in left arm etc. If I had the money, I’d buy private but can’t 😢
I, too, had severe palps and cardiologist was considering putting an implant in my heart to 'see what was going on" as he was puzzled about my palps.
To cut a long story short, T3 (liothyronine) was added to T4 and it resolved my palpitations. I am not going to say that T3 would resolve yours as we are all so different but it may be worth asking to be referred to an Endocrinologist who may advise T3/T4 combination. Only endocrinologists can advise T3 now due to its expense.
T4 is an inactive hormone - it should convert to T3. Your GP could request a Free T4 and Free T3 blood test both of which should be in the upper part of the ranges - these are rarely tested.
Ideally, we are looking for a TSH of 1 or lower with both Frees in the upper part of the ranges.
Most doctors only test TSH & T4. I’ve requested the other tests but they refused, my TSH is 30.5, T4 7.3. I’ve not left my home in 15 years due to other health issues before thyroid, so going to an appointment with an endo is impossible. No money for private prescription either.
Well, Sh69 I am very sorry you haven't improved at all and you are very, very hypothyroid with a TSH of 30.5.
There is probably many on this forum who cannot afford a private consultation or pay for a private prescription.
Don't give up - and I know that's far easier to say than do. I think the majority on this forum are glad to have found members who've had various problems - either remaining undiagnosed or doctors failing to actually have any knowledge at all about the necessity of having thyroid hormones circulating our body, T3 being the active one and T4 the inactive one which is supposed to convert to T3.
What I suggest - and if you click on my name you will see that I also had a long journey before I diagnosed myself, never having heard of hypothyroidism at all . If you have a TSH of 30 - your doctor is failing in her/his duty if they've not prescribed, at the very least levothyroxine and increased dose slowly. There's also a strain on everything within our body.
You have to find a way of getting the optimum number from blood tests which is:-
The earliest possible appointment, fasting (you can drink water) and allow a gap of 24 hours between your last dose of levo and the test and take it afterwards.
Also ask for B12, Vit D, iron, ferritin and folate to be tested.
The first aim when diagnosed is to get increases of levothyroxine until your TSH is around 1. Many doctors think 'somewhere in the range' i.e. up to 6+ is o.k.
You have my sympathies as I know what 'unwell' means with hypo even though the majority of doctors have absolutely no idea at all except to look at a TSH result. In the past all doctors treated our symptoms with NDT (natural dessicated thyroid hormones) until our health was restored. No blood tests then, only the skill of doctors who were well-trained in the common disorder, i.e. hypothyroidism or hyperthyroidism.
Levo converts to T3. T3 is needed in the billions of T3 receptor cells (converted from T4 -inactive) and the heart and brain have the most cells so you need gradual increases until TSH is 1 at least.
Thanks, not well at all atm but I’ve got information from the thyroid trust etc and glad I’m on here and not alone. I’ve tried over and over with my doctors and they don’t really give a puff. So gave up with frustration and my other health issues are bad enough.
Thanks for the advice ☺️ Appreciate your time and advice 😁
Blood levels are fine on B12 etc as I already substituted vitamins because I don’t really eat and relying on supplements and food drinks.
I have no experience of the problems you have, but I can assure you that taking no medication at all if you have no thyroid will give you even worse problems.
Inevitably you will lapse into a coma and at some stage be admitted to hospital with myxedema, a very serious condition indeed. For this the ONLY remedy is to give you Liothyronine (T3) the synthetic and active form of synthetic Levothyroxine (T4).
It is unlikely that you could continue on Liothyronine once out of hospital.
As this would be unacceptable to you the only straightforward solution would be NDT, but you are even less likely to get that from the NHS than a continual supply of Liothyronine.
I was actually going to see my endo had an app then it was cancelled due to the virus... He was going to try me on T3.. But Ive just been left to deal with this alone.. So could take it anymore the pain in the intestine stomach lower bowels is awful even my toung feels swollen loose bowels feeling nauseated everyday no apitite no energy just in bed most days.. It can't go on.. I know what it's like going in to hospital had thyroid storm thanks to my gp not realising I could not stomach the anti thyroid meds it's the same here.. Ive given this stuff nearly a year(op for TT in May last year) I'm still very ill and my T3 is very low even new gp agreed I can't take levo... But thing got put on hold I've not even had my bloods done for 2 months... So will be very firm with gp that no matter what's going on in the world at the moment their are still people with illnesses that need addressed🙄
Having had your thyroid gland removed, I think the very least they should have prescribed is a combination of T4/T3. The fact that your Endo was going to trial T3, I would phone his secretary and explain how unwell you are and could he send a prescription for T3 to your GP.
No-one who hasn't experienced feeling so unwell on a medication which is supposed to 'help or resolve' symptoms can possibly understand why it comes as a shock to take something that increases symptoms altogether.
I’m so so sorry you are so unwell - it must be very frightening .
Have you had your adrenals tested? Sometimes adrenal abnormality (which can ironically be caused by low thyroid) makes it impossible to tolerate thyroxine. The answer might be taking a very tiny dose, less than the normal starting dose of 25 or 50 mcg.
Are you taking the thyroxine well away from food or drink, except water, and from other medication? Some substances (such as tea, coffee, iron, calcium including foods high in calcium need to be 4 hours away.
Are your vitamins and minerals optimal? You are likely to need supplementing of vitamins B (especially folate and B12), D, and iron. Vitamin C helps absorption and is the only thing that can be taken together with thyroid meds. Low stomach acid is common when you are hypothyroid and makes absorption more difficult.
Yes I do it by the book on an empty stomach (this is the problem being on an empty stomach it's not good), I don't take my pain meds or my other meds for up to 3 hours I don't drink coffee just very milky tea.. I've not had the levo for 3 days now and I can feel my stomach and bowels going down the pain is becoming less and the noise is easing my bowles and stomach make so much noise when I take the levo also I have so much wind its embarrassing and now that's easing off to... Im starting to feel better... But I know I need some thyroid medication but not levo it's not working or agreeing with me❤️❤️
This is just how I am. On 25 one day 50 n3xt now but had two awful bouts of loose bowels going on an hour before bed. Weepy, tired and not great. Told Id had partial thyroidectomy, did I ? who knows as ghe surgeon was rude to me after, my husband couldnt believe it. I was 5 last time. One gp said 4 obe said 1. Is there another drug to take. Im wishing myself well every day, its rough.
Sorry your feeling this way. But I’m the same. Was diagnosed in August and tried all Levo. Was so poorly on it so came off it. Doctors won’t give me anything else and I’m really suffering, my results were bad in the first place and they won’t help me. And my health suffering
Do u have a thyroid? I'm totally gobsmacked how the medical profession can get away with this keeping people very ill.. I can tell you if I get nowhere I will take it to my mp.. We all have a right to be treated for any illness my mum had a heart attack and needed tablets to live I never saw a gp refuse her the treatment the same should be for thyroid suffers.. My gp who I saw before the covid 19 virus actually said to me "do you realise how ill you were with thyroid storm" well yes I do realise how ill I was and still am.. You are not being treated well at all by your surgery.... It took me being admitted to hospital for my gp to get worried and I don't intend to go through that again.. If I can say to you if you feel really unwell you need to try to push to see a gp or if you feel so unwell go to A&E that's how I got to find out about all my thyroid levels.. It took my gp 3 years to diagnose me then it was to late to save my thyroid... I hope you can get some help as thyroid illness is no joke...,, 😭
Hi. Yes still got my thyroid, but was ignored by my GP for three years for blood tests. I already have health issues but felt worse than normal and demanded blood tests. My tsb was 30.5 and t4 7.3. I’ve tried all brands with serious side effects and doctors won’t give me anything else. I’m house bound for 15 years already so can’t really go out or find better doctors. I’ve been speaking to the thyroid trust who informed me there’s other treatments available but if my gp doesn’t check the new medical guidelines I’m stuck. Not feeling to good and don’t know what to do for the best. And no funds to go private but by speaking to others, they say going private doesn’t get you anywhere, it’s horrible and we should be able to get the treatment we need. But nhs won’t fund it. Hope you feel better soon
I'm in my flat most days been partially bedridden because of the awful symptoms.. I live on my own the lockdown is a breeze for me.. I only venture out to see gp he has agreed to see me on Monday... But I really can't believe your gp has just left you because you can't stomach levo you could go in to a coma unfortunately my expirience is that's when gps sit up and take notice it took me going in to thyroid storm before my gp did anything it's the wrong way to go about treating people no wonder the NHS can't cope 😠
I hope you have more joy with you’re doctors, 🤞 I’m more frustrated that I cannot get help. But at a loss what to do for the best. Not feeling to good but not going anywhere, thanks for the chat 😊 nice to know I’m not on my own. Take care and hopefully you’ll feel better soon
You take care to... I know it's an uphill struggle but the only way I got help was to insist I see someone endo I had an app but it was cancelled due to the virus.. I've found you have to stand your ground with gp ect after all its your health... Be safe ♥️♥️
Hi Birkie , I am so sorry you are so ill. I would suggest you give NDT a try, as I have similar problems when I am on anything the NHS can provide and am doing very well on NDT. It is all the fillers and lactose they stick in the tablets and syrups ( it probably contains artificial sweeteners to which you are allergic.) You can send me a PM and I can tell you where I get my supplies from. It is expensive but I do hope you can afford it because your life at the moment is too awful ! But I would not stop your medication, however awful it is, because that is very serious. I am not medically qualified, just have been through the stystem and learnt from this amazing forum.
Thanks for your reply yes my gp did say it's probably the ingredients I spoke to him yesterday he is seeing me on Monday he knows I'm not good on synthetic medicines.. To be honest I really cannot stomach it my bowles intestines throat and back passage get so swollen and painful I can't take it anymore... When I was on anti thyroid meds they did the same I had a CT scan which showed server intestinal swelling also swelling of the stomach and gullet I was taken off them immediately I was told by my gastro Dr I cannot take them as I have a bad reaction to them I also have reactive colitis which does not help.. 😭
Hi, Birkie, I have found Monolaurin very helpful with IBS. like you, the slightest thing upset my bowels and I had diarrhoea. Since I started taking Monolaurin it has improved enormously. You could give it a try. Just type in Monolaurin and you will find where to order it from. You have to take your health into your own hands and not rely on Doctor, who knows nothing about thyroid. Even Endos know little about the thyroid, all the research goes into diabetes, because that is sexy, no money to be made from thyroid disease. Good luck, hope you will soon feel better.
i too dont like levo and it did nothing for me. i went on Thiroyd for four years and felt normal (my nodules even decreased in size) No though, for whatever reason, i cant get Thiroyd and have had to go back on thyroxine but my endo agreed to let me try a different brand and added in some T3 and so far, i seem to be okay but the same problem exists in that it seems to make me put on weight or it could be that i am eating more due to being stuck indoors lol
Birkie I still have a thyroid and a few months ago I became so fed up I decided to stop taking my meds in the hope my body would take over for a while as I was absolutely SICK TO DEATH of it all. And I mean all. The going back and forth to not listening G.P., Being consistently under treated, feeling like I'm 85, no sleep, Rosacea, fibromyalgia etc etc etc.
I lasted a month. I was having brief (seconds) blackouts and moments when I had to grab something to stop myself keeling over. Shivers. Palpitations. Legs craps, jumping muscles. Terrific throat pain. Constant post natal drip, red sore swollen tongue, gums and throat. I have these symptoms often (which is why I got fed up) but it went into hyperdrive and I never had it that bad before or ever had blackouts before.
I took my meds again.
I've gone of my meds before a few years earlier "successfully" for around 5 months. Was not taking regularly (same time each day. Empty stomach etc) beforehand, which is probably why I lasted so long on that occasion. So I had a more gradual physical running down till the severity of my common allergies, colds swelling throat and face and complete lack of thinking ability caught up with me and I went back on them.
I came off my meds because I remember feeling bad, but better before I ever took levo. But is seems once you are taking it you need to keep doing so or take something else (T3 NDT etc)
But you will need something. You will eventually deteriorate without anything.
Apart from high TSH reading, I only had symptoms of thyroid problems when on medication. Stuck it for 9 months. Have been off medication since beginning of December and back to my healthy active self with no obvious symptoms.
HI there sorry you feel so will - you could be suffering with adrenal issues that need treatment with low dose steroid to help the adrenals cope with the pressure of taking a hormone that raises the need for the adrenals to cope to supply your needs because your metabolism has been raised.
You need to tell your GP that you need to see or have a call with an endocrinologist urgently. I believe all of the symptoms you are suffering are adrenal gland based - try to keep on the liquid thyroxine eventually as it is a better product than tablets - much easier to taper the dose up and down as necessary.
I am an Addison's patient so sympathise with your experience - but now take a small dose of steroid - you really need to get to the bottom of this by having a short senacten test authorised by your endo as you cannot stay off thyroid hormone if your tests show you need it - can you send your results please of your tests.
I had bloods done over 11 weeks ago Dr only did TSH can't remember what it was but he wanted me to lower my dose from 75mg to 50gm again but I haven't because I've already done that before it's like a game of tennis 😠 my last full bloods were
Hi and sorry to hear how you feel. I felt like that when or just before being diagnosed.
When waiting to see my Endo this young lady who had an appointment after me got hold of the Endo (not physically) and started saying all the things you are saying. As he had already called my name I asked if he wanted to see her first as she seemed very distressed but he said No.
Anyhow when I was in he explained about what happens if you don’t take your meds or stop them all at once. Wait a minute. Your asking me to do just that I thought but he explained about how I was different on block n replace but did get onto in her case rather than ending in a coma he had told her to take her meds with food she likes as a little of the meds is better than none at all and most of the side effects are not as severe or in most tests found to disappear. But she simply refuses ?
Don’t know if you’ve tried that or not but thought it could help.
Actually it's worse when I eat that's when everything hits the fan as soon as I eat I have server pain.. Cramps inflammation then runny bowles the pain is so bad I cry I was the same on anti thyroid meds... Hospital gp who I was under with thyroid storm did CT scans which showed server imflamation of bowles. Stomach even my throat was swollen I was taken off anti thyroid meds.. I have ibs.. And reactive colitis and their are quite a lot of medication I can't take... I know it's the ingredients in the levo that's affecting my bowles and stomach I've now been off it for 3 days and my bowles, stomach and pain has subsided but I know if I go back on them it will start up again because I've done this before last year came off them for 7 days same thing everything settled down went bk on and back to bad pain looking 6 months pregnant runny bowles, awful rumbling noises and bad wind not nice at all... 😢😢😢
Hi - on reading your results nothing really jumps out on the page but I would get an appointment with an endo to speak about adrenal response as I believe you are experiencing a low adrenal response or it could also be too much thyroid hormone but I don't see your figures showing that - bit difficult to read your results as format a bit skewed the shaking and the bowel problems can be either adrenal issues or hyper issues due to thyroid hormone dosage. or even that you need a steroid for the bowel issues as colitis can be due to autoimmune issues. I don't know what drugs you are currently taking but could also be something you are already on disagreeing with your thyroid meds.
I'm only on buscopan and opmrezole for bowle and stomach and I keep them away from the levo a good 3/4 hours... I know it's the ingredients and I reckon its the sugars I can't even stomach antibiotics my gastro consultant had me on 5 diffrent types introvenis when I was rushed to hospital bleeding from my back passage I just kept vomiting constantly I was going down hill rapidly he couldn't figure it out until I told him to take me off the antibiotics he agreed but was sceptical it was them upshot it was as I said he tried me on 5 types he then said I give up you are obviously having an alergic reaction to the drug. My other meds are all gastro resistant. And I take them with food. I was on steroids for 6 months after that stay in hospital then admitted again same thing went on steroids again for 3 months had the little blue card.. Its constant now when taking the levo... Its draining me I have no life nothings changed I feel as ill as I did when I had my toxic thyroid, 😭
Sorry forgot to add that if you are 'losing' your thyroid hormone because of your bowel issues then this can cause a serious issue because obviously you are not absorbing any of it - same thing happened to me because I was lactose intolerant - now on sugar free lactose free - I am better.
Your creatinine levels looked a little high but this could be because you are dehydrated due to losing fluid with your bowel issues. You really need to get this sorted out as you already know.
The same thing happened when I was on anti thyroid meds I told my gp several times it was the meds but he insisted I keep on them well upshot was I was unable to absorb them because I either vomited them back then also had very loose bowels with server pain inflammation in stomach and large and small intestines rushed to hospital in thyroid storm because of course the meds were not absorbing was taken off them but because I was hyper thyroid they were the only meds.. Anyway I was given an uptake scan and consultant told me my thyroid would need to come out as it was toxic had op in May last year feel no better than I did when I had my thyroid... I've been on diffrent brands different amounts nothings worked I was taking 75mg of the liquid levo but its very sugary you can taste it it upsets my stomach the moment it hits it..., 😢😢
Hello I think this is bad thinks you don't take the pill because I was on the same sick 3 years before my tyroid was stopped. My GP started 350microgramm levotyrosin tablets and every 2weeks he take a blood test and reduced slowly nearly 2 months my body find the good dosis 100microgramm was perfect for me Don't be afraid just take a time and passion this is slow procces Take care your self please
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