Anyone with Hashimoto's out there?

[lookthepartbethepart]

Would be so grateful for any advice. I was diagnosed with this about 4 months ago (I'm 37). Tsh was 10.4 but I'd been feeling shite for well over a year.

Initially was on 50mg levo and starting to feel a lot better (tsh went down to 4.5) and was being tested at 6 weeks. A different GP doubled the dose and asked me to wait 12 weeks between bloods (I have no idea why such a long wait) I went back early due to symptoms and it transpired I was right to be concerned and they'd sent me hyper (tsh 0.01). Currently been on 75mg for 3 weeks but still feeling crap.

Any positive stories of getting this under control? Is it just going to take ages to get to the right dose? It is really starting to affect my mental health - some days have anxiety, paranoia, depression, obsessive thinking etc I'm knackered, achy and everything is a major struggle. I had a period of three days last week where I felt really good but then it disappeared.

I feel as if I've been swinging from hyper to hypo for decades but with periods of normality in between. In the last year and a half the swings have become more overwhelming and closer together - rolling into each other - does this suggest that the Hashi's is in it's final throes?

Hi I have hashimotos and I'm also 37, I was finally diagnosed last September after pushing for an antibody test. I have spent the last three years of back and forth to gp and tsh going in and out of range until I finally got meds.
I started on 25mg with tsh of 6.6 then after 6 weeks my tsh was 4.4 so I asked for and increase to 75mg then after another 6 weeks my tsh was down to 1.89 gp was pleased but I was still tired and having painful joints ect. Three weeks ago I asked for 100mg and it was given. I feel a little better but am getting the odd pain on left side just above my breast so wondering if maybe I need to alternate days 75mg with 100mg.
I too have the ins and outs of feeling good and bad and also feel they are closer together. I just want to feel like me again but I don't even know what that is anymore. Some days I feel like I'm impersonating myself if that makes sense!
Have you had vit d tested and b12 I was really low on these too but have managed to get them well into range with supplements.
My ferritin is really low and I just can't seem to get it up even when I take loads of iron supplements.
Also I'm gluten free which is recommended for people with hashimotos.
Sorry not much help really just joining the pity party!! Just know you are not alone, if you need to vent or chat I'm happy to oblige!

I was finally diagnosed in October after a 15 year cfs diagnosis. Since then I've been swinging from hypo to hyper..can't seem to get dose right I'm now going to try 75 and 50 on alternate days. Its a pain..I had a few weeks where I felt that the thyroxine was helping until I went hyper..I'm hoping this dose might suit me better. who knows
Good luck..Its a pain!

Thanks ELR, sorry you are going through this too. I think my iron is ok, I'm not sure what else they tested but they won't even test me for the antibodies so I think I'll get short shrift for anything else. I would like to know where they're at so that I can see if the autoimmune side of things is up or down but they say no test needed as treatment is same whatever. I was lucky to get put on levo as my tsh was 10.4 and apparently they only start treating if it's over 10 here which I think is high compared to a lot of places.

Horrible as it is, it is nice to know that someone else feels they are not themselves! It is the worst symptom. Hopefully a veteran will be along at some point to give us some hope.

I've also had left chest and arm pain - wondered if it was because I was hyper but who knows? GPs couldn't be less interested, feel like I am some sort of guinea pig whilst they decide what dose is right, and they all have a different approach (usually see someone diff everytime here).

I don't have Hashimoto's, but have been reading 'I Quit Sugar' by Sarah Wilson. She found that her symptoms were helped a lot by giving up sugar. May be worth a try and I see someone above has been told to give up gluten. I think they both have a similar inflammatory effect on the body so there may be something in this.

awaywego1 - that's how I've been since starting - feel worse than before!
Did the GP suggest to you the alternate days dosing?

2madboys - thanks, have been cutting out gluten, next step sugar - I might take a look at the book, have seen it mentioned on a few blogs. The problem I find is that being hyper makes me crave carbs like mad - almost like a growth spurt in a child. Will have to hit the sweetcorn instead

I have Hashimoto diagnosed by antibody test just over 2 years ago at age 27. Currently on 50mg of levothyroxine which hasn't helped at all. Have made an appointment to see if go will up the dose (fingers crossed) I also have been on ferrous sulphate best part of a year to low ferritin 6 but no luck raising levels.

2mad I don't have her book but follow her blog, she talks a lot of sense think she may be a little neurotic too, which is no bad thing!
I'm about to start the whole 30 program which is kind of pales and no added sugar but you can eat fruit and dates so not super restrictive.
look I don't think I've every truly gone hyper my antibodies were raised but not super high and the swings in and out have never really been big.
The thing I hate most is not knowing how I'm going to feel tomorrow or next week ect. I'm always very well presented makeup nice clothes ect so people just assume I'm fine when really I feel like absolute crap! DH is a little sympathetic but not that much he thinks now I've got the meds everything is fine and I feel better, which some days I do. I suppose we just have to accept that there will be good and bad days but I'm not that kind of person. I can't remember a day that I didn't hurt somewhere.

Tubby if your ferritin is only six, thyroxine won’t work. You’ll need to fix that first. In fact at that level, your ferritin is almost certainly below the reference range and your GP should really be ordering investigations and putting you forward for an infusion. Even if everything else was OK, it could take years to raise your ferritin to an appropriate level if you are menstruating.

Sorry to hear everyone's bad experiences. I'm going to try cutting out sugar and keeping gluten out and see how I get on. Looking fwd to spring/summer as always feel better then anyway.

Really hope there is someone out there who has this under control, feels better and can tell us how they managed it!

I have hashimotos I know the feeling of everyone thinking you are fine when you feel like crap ! I have been exhausted for a loooong time Currently on 150 mgs of levo and 40mcgs of T3 but I am considering going over to the dark side and taking NDT ! I am gluten free also and it makes a difference to all my gi problems but still struggle with chronic fatigue and it makes me sad to think of how I was before I got ill and how I am now, yes if anyone has this sorted it would be great to hear from them

Also I would point out there is another thread with heading Thyroid issues and GP on here everyone should read it if you have thyroid problems.

Thanks for the info rockin.
I will ask about the infusion. The gp did do a stool sample for reducing substances? Which was lost so I will ask to do another of those too.

Thanks away will have a look at the other thread. We're running a bit low on success stories here .