Levo not good for me

[birkie]

Hi everyone and happy new year 🎉

Just been reading thyroidmom84 Post and I'm having big problems with levo surgeon and gp has been fiddling with my levo since May last year started on large dose 125gm on all amounts my surgeon saw hyper symptoms I was dropped to 25mg every six weeks until I was on 25mg on this amount I was defo hypo but I didn't have tremors or sweats,headaches or running to the loo to much and my sleep was sort of OK still had pain in bowels/stomach seeing as I have other conditions.. Now I have been on 50mg for nearly six weeks and I've been having slight tremors sweating constantly headaches and going to the loo more with bowel/ stomach pain I fear going up more will just make me more ill as I was on 125mg, 100gm, 75mg, 50mg.. I've never felt well on it and are struggling I'm also now having a big problem sleeping due to the sweats this is what I was like when I was hyper... Had total TT in May due to thyroid being toxic and was diagnosed with graves.. It just doesn't seem right I'm in between hyper and hypo and neither symptoms are nice.. 😢😢

[thyroidmom84]

I am sorry someone else is having similar issues. I am wondering if Graves is like Hashi’s and can cause both hyper and hypo symptoms (I am sure one of the brilliant folks on the forum can help with this).

[greygoose in reply to thyroidmom84]

I'm not sure it is. The problem with symptoms is that so many of them can be both hyper and hypo - or could even be something else entirely, as hypo/hyper symptoms are non-specific.

But, the reason you can have both hypo and hyper symptoms at the same time, is that the hormone in your blood is not distributed evenly across all the millions of cells in your body. Some cells are getting too much, and others aren't getting any at all.

When you've been hypo for some time - as you usually have been when first diagnosed with Hashi's - the body turns off receptors on what it considers to be non-essential cells. That's what causes hypo symptoms. And, it needs to be on the right dose for quite a while before it will reopen them all. You don't have that problem with Grave's. The problem with Grave's is too much thyroid hormone, which also causes symptoms. So, not really the same problem.

[birkie in reply to greygoose]

Hi greygoose

I'm really sure it's the levo that's causing my problems I was very hyper when diagnosed so I know the symptoms when they arise like last nite I was sweating bad like every ten or fifteen min(I timed them) I had that same feeling the sweating lasts so long and is terrible my window is wide open Again!!! As it was on all the doses of levo only had hypo symptoms no bad sweating or tremors when on 25mg which showed my TSH as 3.53..T3 2.9 4 10.9.... Reckon that is hypo.. soon as I've gone up I'm starting with hyper symptoms again and fear going up will make me worse... Their are a lot of medications I cannot take my gp knows this but always seems to insist on keeping me ill... 😠😠😠

[greygoose in reply to birkie]

Have you tried different brands of levo?

[birkie in reply to greygoose]

Hi

Yes been on several I'm now on mercury Pharma...ELTROXIN.. doc said these would be better for my bowels/stomach been on them for 4 weeks but their no different from the other levo... That was mercury Pharma to... Same symptoms I'm now bedridden again to finding it very hard to get moving the muscle And bone pain has gotten worse headaches, nausea, tremor, loo.. Everything it's so debilitating I just want to cry... 😭😭😭😭

[greygoose in reply to birkie]

I don't know how your doc works that out, but still. Have you tried T3 or NDT?

[birkie in reply to greygoose]

Hi

I just know my gp will keep me on levo as he did with the anti thiyroid meds which put me in hospital with thyroid storm.. I've asked him about NTD and T3 but he just says give the levo time it takes a long time to get the right level... That's fine but not when you feel so bad on it.. I'm seriously thinking of moving surgerys... my bloods are due on the 14 of Jan so just waiting on them results 😭

[greygoose in reply to birkie]

Well, he is right about it taking a long time. But, during that time, you have to keep increasing the dose in order to get to the right level. It's not going to happen spontaniously.

[birkie in reply to greygoose]

Hi

I started on 125gm after TT then it was decrease at 25mg down to 25mg on the higher doses I was really ill hyper... And as I'm going up I'm feeling hyper again it's mad... 😠

[greygoose in reply to birkie]

How did you feel on 125 mcg?

[birkie in reply to greygoose]

Hi

Very hyper like I did when I had my thiyroid I felt like this on most doses but a little milder I felt hypo on 25mg hardly sweated no tremors but had pain in bowels/stomach I'm now feeling hyper again.. But exhausted to but was like that when hyper 😭😭

[greygoose in reply to birkie]

I think maybe it's time to start insisting on T3. Or buy your own.

[birkie in reply to greygoose]

Hi thanks for all you replies greygoose it's great to have this site and wonderful people like you and others on here.. ❤️ I intend to seek T3 or NDT... If my surgery refuse I'm changing to another... Firstly I'm still waiting on an endo app my surgery was doing this I have rang the endos secretary but she hasn't got back.. Neither has my surgery I have rang about it and sent e - mails bet my gp says I don't need to see an endo.. I will not be seeing him as our last appointment was appalling he is very arrogant and ill mannered I'm always on edge going to see him as he bully's you in to doing what he wants... 😠