Levo makes me ill.

[Hills]

Afternoon all,

Well I have been back on Levo for a few days and already I am noticing the difference.

The last few days I have felt neaseous, but today things are worse. Still feeling neaseous, stomach all over the place and the brain fog is back excema in my hair and clumsy, no concentration and the shakes.

Having not had to suffer any of these symptoms for 15 or so months I cannot see me lasting six weeks on levo to prove a point to my Doctor. I shall be ordering Armour today.

How I managed to function & work feeling like this previously is beyond me. At the moment I am off work because of the way I feel, but I am going to have to go back to work at the end of the week. Not sure I am fit to drive let alone work on the aircraft.

My lovely Doctor who was supportive as far as directives would allow has left the practice so now I am in limbo, no support, no way of being signed off sick while I try to deal with how I am feeling. (To be fair he did not know I was on Armour).

I am going to keep a diary so that I can present it to the Practice manager in six weeks time. I was stupid in admitting to the Doctor that I was taking Armour and agreeing to take the Levo, should have kept my mouth shut, had my blood tests twice a year and carried on the way I was buying the Armour.

Lesson learnt.

For thoses of you tempted to change to Armour I would say try it, it is only going back on Levo that I realise how ill itmakes you feel.

Hills

[ThyroidUK123]

What brand of levo was it? I tried Actavis, and had to stop it because of intolerable heartburn.

[Hills in reply to ThyroidUK123]

Actavis, although previous to the Armour I had other brands.

Cannot believe how ill one little tablet can make me feel. It is supposed to make me well

[Heloise]

Hills, sorry you had to teach them the hard way and sorrier, they probably won't learn anyway. Even though some do okay on Levo, they should acknowledge that there are those who don't. I think your testimonial is important. Thankfully you found a way out. It shouldn't have to be this way but it's better than ruining your health and your life. Are you stopping the levo?

[Hills]

I will do as soon as I have the Armour. Or I may just stop it & suffer the consequences for a few weeks. At least I know what I need to be on and I am so lucky I can get hold of it. What a crazy position we are put in.

Hills.

[debjs]

Makes me ill too. I tried it again last year for only 3 weeks as could not bear it for any longer. All the side effects listed on the leaflet plus it makes my head nod continuously like one of those dogs in the back of a car! Can't believe people are disbelieved and made to endure feeling so unwell to prove a point. Hope you feel better soon.

[Neijam]

How much armour was u on and how much levo u on

[Churchie]

Hi Hills

This is really interesting in that I had a similar experience in June. Put on 50mg of Levo and felt a bit worse and then after a month doubled it to 100mg and rapidly went downhill with terrible symptoms that there was no way I could carry on taking it. Put in a complaint/query with surgery whether that the double dose should have been prescribed and on Friday was rung back by head of practice to say that prescribing protocol was normal and that in 30 thirty years he had only experienced one other patient who had an adverse reaction who was 85 with other underlying health issues. Is it so unusual?

Also can I ask why if you had a bad reaction before why you have started it again if armour was ok?

Thanks

Churchie

[helvella Administrator in reply to Churchie]

With over 60,000 GPs in the UK, and over a million taking levothyroxine, the incidence could both be low and yet result in considerable numbers of people with problems posting here.

Current statistics (very rough and ready):

Approximately one in three GPs has one patient as a member here. (Average - obviously some will have several and others will have none.)

Each GP has only around 15 patients prescribed levothyroxine.

If 1% of patients on levothyroxine have a problem, that would be around 10,000 people. In turn that means (on average) only one in six GPs has a problem patient. That is what I mean by low incidence but still a lot of people. (Certainly do what you like to scale that up. I am not saying we know only 1% have a problem, just that with 1% you still have a lot of people affected but low visibility to individual GPs.)

Rod

[birkie in reply to Churchie]

Hi churchie

Im really sure gps/endos don't listen to patients this is my problem now I'm not getting on with levo it's been over 8 months since I was prescribed it due to total TT in May last year had graves..when I was diagnosed in sep 2018 I was put on anti thiyroid meds within 2 weeks I was very ill on them gp insisted that my body would get use to them. After six weeks I could no longer keep them down so was changed to ptu I had the same symptoms vomited bad bowels and stomach pain but gp insisted I kept on them upshot because I vomited them back they didn't work I had an adverse reaction to them I was rushed in to hospital in thyroid storm.. And now the levo seems to be doing the Same to me although I've not vomited I'm nauseated like morning sickness and in pain.. It was eventually found that the anti thiyroid meds affected me badly I had a bowel scan which showed bad inflammation in my bowles.. Same with the levo.. My endo said in all his career he'd never heard of any one having trouble with anti thiyroid meds or levo because I told him my only fear of having my thyroid removed was having the same problems as with the anti thiyroid meds.. He totally dismissed this as did my surgeon and gp... My gp should know better knowing the hell I went through with the anti thiyroid meds... But no.. We are Guinea pigs!!! They should be ashamed of them selfies 😠😠😠

[Hills]

Hi all,

I was on two grains of Armour, one in the morning one at night. According to my Doctor I was slightly over medicated.

I am on 100mg of Levo now. Took it half an hour ago already feeling sick again, and dizzy.

Previously when on Levo I had issues hence why I went onto Armour, which once I got the dose correct I felt normal on.

Will take it for a couple more days and if no better will stop It and just do without until the Armour arrives. Rather feel ill through no medication than taking something that is making me ill.

Ills.

[helvella Administrator in reply to Hills]

We quite often see a reasonable conversion between desiccated thyroid and levothyroxine as 1 grain = 75 micrograms. 2 grains, therefore, would being the region of 150 micrograms. Even if slightly over-dosed on 2 grains of Armour, I suggest that 100 micrograms of levothyroxine is likely a significant under-dosing. However, if it is the levothyroxine or any of the excipients that is causing problems, you are in a hard place.

Rod

[waveylines]

You have all my sympathy -i recently ran out of WP Thyroid due to a pharmacy messing up my script -I too was offered levo or levo and T3 I declined as i decided going without for a day or two was preferable to going back on meds that i know make me unwell....

Hope the Armour comes soon.....