Levothyroxine causing problems with nausea oedema and reduced urine output

[lisaas]

Hi

I wondered if anyone taking levothyroxine had any issues with passing less urine. I am having severe side effects on the drug including rash on my arm and face, oedema on the legs, stomach and breast. I went to my GP to see if he could help but he did not have a clue what to do. He told me there is nothing else and I need to continue the drug. I stopped taking levothyroxine for a couple of weeks and my thyroxine dropped down to 7 and tsh raised to 49.

I'm finding it difficult to cope with the side effects. Anyone have any advice?

[Skyrooms]

I am taking levethroid and I have urine problens: I have the urge to urinate almost all day long. And either very little comes out or nothing. It is verying distressing! I hate it.

Sky

[SeasideSusie Remembering]

lisaas Your GP is wrong. Firstly, he could prescribe a different brand of Levo, it could be the fillers in the one you are taking and you may not necessarily get the same side effects from another brand with different fillers. (Have you checked the patient information leaflet for side effects, are yours listed?)

If you are lactose intolerant he can prescribe a Lactose free Levo.

Then there's liquid thyroxine.

Also special order thyroid meds.

T3 and NDT too.

He has options he could offer you.

thyroiduk.org.uk/tuk/treatm...

[lisaas in reply to SeasideSusie]

I mention the NDT to him and he didn't know what it was. Then he looked it up and said it's not licensed for use. I was very upset and said to him that I can't go on with this medication . Since I have restarted it the rash is back, I'm swollen and I can't get out of bed in the morning.

I will ask him about the other brands and see if he can help.

Thank you for your advice

[birkie in reply to lisaas]

Hi lisaas

I've had total thiyroid removal done on my 8th this year been on levo GP gave me 100gm Avis and 25gm wockhart..2 different brands I've only been on them 6 weeks and are having awfull symptoms I stayed in bed today as I feel awfull I have tremors,are sweating,feeling sick,and have body pain but don't know if that's my Fibro flare up or the levo I feel no better than I did when I had my thiyroid..I know it's early days but god this is not good I hate it I had to have my thiyroid removed because it was toxic and I welcomed it couldn't wait as I thought it would cure my awfull symptoms wondering if it is the fillers in the levo as seasidesusie says I'm not good with meds unfortunately 😢

[puncturedbicycle]

lisaas I'm so sorry to hear you're unwell. Are you getting copies of your test results? It might be an idea to post them. I wonder if you'd benefit from changing brands as SeasideSusie suggests, and/or adding some t3. I had terrible oedema when on levo alone, even when on a hefty dose that brought all my results into the ideal places in the range.

You may find it helpful to have a chat w your pharmacist too. I had a lovely one who completely supported my efforts to stay on one brand. She used to keep it aside for me. Your pharmacist might have some suggestions about what brand to try and what would be the best way to get it (if your gp would have to specify it for you on your script or if the pharmacist would keep it by for you).

Have you tried taking an antihistamine for the rash? That would tell you if it is an allergic rash or something else.

[lisaas in reply to puncturedbicycle]

I will try taking an antihistamine and see if it helps.

my results have been all over the place.

may TSH 79 and T4 8

end of may TSH 50 and T4 12 on 50mg levo

July increased to 100mg TSH 5 and T4 26

September still on 100mg TSH 0.1 but they didn't check T4 told to go to 50mg and then I had severe reaction swelling rash nausea so after a week I stopped. One week later my TSH was 49 and T4 7

[puncturedbicycle in reply to lisaas]

They reduced you from 100 to 50? It sounds like you're suffering from being severely undermedicated. Do you know what the ranges are for these results?

It seems like you might need to be on an alternating dose of 100/50 or 100/75 (or you may need to be on t3 as well as or instead of t4, you don't know without test results) but to cut your meds in half was an overreaction and that may be what is making you so ill.

It does sound like your gp is in over their head. I am never a big fan of endos but I wonder if you could find a specialist who would work with you on your thyroid issues w understanding and a gentle touch. (Tbh I guess that's what we all need.)

[lisaas in reply to puncturedbicycle]

My results were TSH 0.1 that's when they cut it down to half a dose.

I did feel a little sorry for the GP, he doesn't seem very experience and he told me he doesn't really know what to do. I told him I would like a referral to an endo and he said it could take a few weeks. But he said he would get some advice from one of the on call consultants on monday, hopefully he will be able to help.

I restarted the drug and have a terrible rash now. I started taken antihistamine as was suggested here and it is helping a little.

They won't check my T3. They keep saying it isn't important. I don't think they understand hos to manage this condition .

[puncturedbicycle in reply to lisaas]

Yes, it sounds like you're right, your gp may not be able to help. The good news is that you may be able to make suggestions once you find out more yourself and if he is all at sea enough he might allow you to help him help you. It can be more of a problem when they think they know everything. Endos often come in this latter category so it's good to ask to be referred to one of the endos on the TUK list.

Even if you were a little over the top of the range, that means your meds want a slight adjustment, not cutting in half. You need to know where your t3 and t4 are (via private test if necessary) and then you'll know what needs to be done.

[dizzy864]

I have had these issues for many years. I am also on T3 so that was not the answer for me. I feel the urge to pass urine all the time and am often unable to produce much. I still have the urge after passing water. My problems are worse some times than others. Consuming alcohol definitely makes me much worse. I find it extremely embarrassing particularly when I'm socializing and have to keep visiting the little girls room.

Years ago, my gp prescribed Furosemide tablets, but I haven't been able to persuade a gp to prescribe them recently. I buy them when I go to Spain as it is available over the counter there for a couple of euros.

This makes me give up urine and I am a lot more comfortable for a couple of weeks but then it builds up again.

Over the years I have had many tests. Five or six years ago, after a bladder test I was told that I had an exceptionally small bladder! I know this is not correct as my problems come and go and are not constant.

If you find any answers please let me know!

[netgrouchy]

Lisaas

Hope you have had success over the last year.

Out of mere curiosity, please tell me about the rash you developed on levo. I am an all levo - no T3 user. I have been at my wits' end with a rash over my stomach, upper chest right up to the neck and onto my face, surrounding my ears and now seems to be encroaching my scalp.

Thank you!