Advice on thyroid treatment

[daisybell]

I have just discovered that my thyroid is playing up again... My TSH is less than 0.01, my T3 is 7.4, and my T4 is 22.

I have been on carbimazole before when I first became hyperthyroid, and I hated it. Lots of side effects, and then a big crash when I got hypothyroid. My ME is now so much more severe, that I am really frightened at the thought of taking carbimazole again. However, radioactive iodine doesn't thrill me either....

Has anyone tried anything else, or do you have any suggestions?

Thanks in advance!

 

[ahmo]

I can only advise you check out these sources, see if you can find anything useful. These are currently at the top of my list. Sorry I can't be more helpful.

http://www.thyroidrootcause.org/.

http://advancingthyroidcare.wordpress.com/2010/03/21/three-phases-of-treating-hashimotos/

http://www.clarkspharmacyaz.com/health-professionals/ Rudy Dragone

https://www.youtube.com/user/TheRLCLabs Several Hypothyroid vids, incl Dragone

http://drknews.com/

http://thyroid.about.com/od/thyroidbasicsthyroid101/a/5lies.htm

 

[daisybell]

Thank you @ahmo

 

[Bob]

Hi daisybell,
Beta-blockers can reduce some hyper-thyroid symptoms. (Although they don't actually reduce thyroid levels and they aren't an actual treatment for hyper-thyroidism.)
So perhaps it might be worth you exploring the use of beta-blockers with your doctor, as a potential means of reducing symptoms, at least for short-term use?
I don't know how willingly doctors will prescribe beta-blockers for hyper-thyroidism, and it might not be safe to use them in the long-term (because they might mask the symptoms of the condition), but at least in the short-term they might have some potential for reducing symptoms.

I say all of this based on personal experience, but I haven't done any research of the use of beta-blockers for hyper-thyroidism. So I might have given you unhelpful or misleading information in this post. None of the above is intended as medical advice.

 

[daisybell]

Thanks @Bob
My doctor is away for another ten days, so I won't be doing anything until after that...
I am just so reluctant to take carbimazole again, as I had horrible side effects last time. I hope to get a different endocrinologist this time round too, as the last one told me that CFS was psychological, and I had to do all my med adjusting myself. I still ended up hypothyroid though.

Pre that episode, I was working 4 days a week, able to go for walks and horse-ride. Now I am largely home-bound and not able to work, so I am really worried about what might eventuate...

 

[halcyon]

Did they do any further testing to determine why you were hyperthyroid before, or did they just put you on the carbimazole?

 

[daisybell]

Hi @halcyon
They tested my thyroid antibodies and told me I had Graves' disease.

 

[halcyon]

Glad they got to the bottom of it but sorry to hear that it's Graves'. I hope you can find a proper endocrinologist to help you this time around.

 

[danceintherain]

I got diagnosed with Grave's recently, and I am taking methimazole. I don't know if that is another name for what you took, but I know there is more than one thyroid blocking drug. I am not thrilled with the iodine treatment idea either but I may have to go that route if the med doesn't work. Or do the surgery and pray my parathyroid glands stay intact. My T4 has decreased significantly (and I've gained a tin of weight to prove it), but my TSH is still very low (last test showed .05). It is pretty frustrating. And having messed up thyroid hormones causes all sorts of other issues (as I'm sure you know). It is pretty hard to fix anything else going wrong without normal thyroid hormone levels

 

[daisybell]

I got diagnosed with Grave's recently, and I am taking methimazole. I don't know if that is another name for what you took, but I know there is more than one thyroid blocking drug. I am not thrilled with the iodine treatment idea either but I may have to go that route if the med doesn't work. Or do the surgery and pray my parathyroid glands stay intact. My T4 has decreased significantly (and I've gained a tin of weight to prove it), but my TSH is still very low (last test showed .05). It is pretty frustrating. And having messed up thyroid hormones causes all sorts of other issues (as I'm sure you know). It is pretty hard to fix anything else going wrong without normal thyroid hormone levels

Yes, that's the same drug! I just had another go with it, at only 5mg daily, and although it lowered my T3 and T4, I have had to stop taking it as it makes me feel so lousy. I have a new endocrinologist now (private) who has agreed that I should never take methimazole again! My next option is PTU, if and when I need to have more treatment. I'm hoping to avoid radio iodine but that may be my only option..

I'm hoping that perhaps Rituximab might be available for ME before I need to go down the radio iodine path, and that Rituximab might in fact help the Graves' disease too!!

 

[evatious]

@daisybell, I know you posted this a while ago but I was wondering how you are going on PTU? I also had to switch over from carbimazole which managed to make me feel even worse! (as if such a thing was possible.)

I'm finding it very difficult to regulate my levels which fluctuate between high and low. Currently I do one month at 200mg per day and the next month at half that dose and then back to 200 again... I know I have to take it twice a day because it has a short half life (so each dose only works for 12 hours,) but I'm finding it difficult to manage while I'm hypo - due to migraines and brain fog which go away while I'm hyper... I miss taking meds while I'm having migraines because I can't keep them down...

I too am hopeful about Rituximab and it's potential to possibly help with Graves' as well as ME.

 

[danceintherain]

I take 5mg methimazole. I am not familiar with your med. at my last check, my T3 was normal. I have blood work coming up again in a couple weeks. They have to check my antibodies. I get migraines too, but not from thyroid issues. Sorry you are having to deal with that.

 

[daisybell]

@daisybell, I know you posted this a while ago but I was wondering how you are going on PTU? I also had to switch over from carbimazole which managed to make me feel even worse! (as if such a thing was possible.)

I'm finding it very difficult to regulate my levels which fluctuate between high and low. Currently I do one month at 200mg per day and the next month at half that dose and then back to 200 again... I know I have to take it twice a day because it has a short half life (so each dose only works for 12 hours,) but I'm finding it difficult to manage while I'm hypo - due to migraines and brain fog which go away while I'm hyper... I miss taking meds while I'm having migraines because I can't keep them down...

I too am hopeful about Rituximab and it's potential to possibly help with Graves' as well as ME.

That's interesting that carbimazole really doesn't agree with you either!
I haven't tried PTU as currently my thyroid levels are ok.... I wonder whether the LDN is in fact helping to regulate my thyroid function, as it seems surprising that my Graves has gone into remission despite my stopping treatment.
Have you tried LDN?
I take quite a high dose (9mg daily) which seems to help for me.

 

[danceintherain]

I never tied carbinazole actually, so I have no idea if I would have a problem. I've always taken the methimazole, right from the start. I'm sorry you are having problems. Maybe try the methimazole? Try looking for a functional medicine doctor as well. Or a dr that will let you try an herbal approach with Hawthorne, lemon balm, and one other which I have forgotten. Along with a strict diet and proper exercise, it does help some people quite a bit. But do NOT do it without supervision. Functional docs take a full body approach to try to fix the immune system, not just fix the symptoms of grave's disease. I don't know if you have local access to one, or the financial means (they don't take insurance), but some with work you you over the phone and video chat. Hope that helps.

 

[evatious]

That's interesting that carbimazole really doesn't agree with you either!
I haven't tried PTU as currently my thyroid levels are ok.... I wonder whether the LDN is in fact helping to regulate my thyroid function, as it seems surprising that my Graves has gone into remission despite my stopping treatment.
Have you tried LDN?
I take quite a high dose (9mg daily) which seems to help for me.

That's very interesting and no I haven't tried LDN, I'd love to. I think it looks like there could be a significant beneficial effect on the Graves' from it (or for many auto-immune linked diseases by the sounds of it.) Did you have a specialist prescribe it? It's not something that has come up when I've talked to my endocrinologist and I have so many systems going haywire currently that I feel my doctors are missing the bigger picture - which is the pre-existing CFS.

I find Elaine Moore's site quite informative and well-referenced, she often has articles I find useful when I'm looking at possible treatments or supplements.

http://elaine-moore.com/Articles/Lo...itsofLowDoseNaltrexone/tabid/112/Default.aspx

I never tied carbinazole actually, so I have no idea if I would have a problem. I've always taken the methimazole, right from the start. I'm sorry you are having problems. Maybe try the methimazole? Try looking for a functional medicine doctor as well. Or a dr that will let you try an herbal approach with Hawthorne, lemon balm, and one other which I have forgotten. Along with a strict diet and proper exercise, it does help some people quite a bit. But do NOT do it without supervision. Functional docs take a full body approach to try to fix the immune system, not just fix the symptoms of grave's disease. I don't know if you have local access to one, or the financial means (they don't take insurance), but some with work you you over the phone and video chat. Hope that helps.

Hi @danceintherain, carbimazole converts to methimazole in the body. I already have a functional GP (on top of my usual GP and specialists.) She's good, but at the other end of the country. My only option for now is PTU (or surgery or rai.)

I've been to several endocrinologists and one in particular noted that he'd had several patients who reacted badly to carbimazole since around 1990. But as soon as he'd had a patient with that intolerance, he noticed more and more. I wonder if they changed the formula around that time? For now, PTU is the only alternative in the country and I don't think there are any other options. Carbimazole was causing kidney damage for me unfortunately.

 

[danceintherain]

I tried LDN at less than .5 mg (I had to split it myself). It made me sick and kept me up all night, even if I took it in the am. They say that stuff goes away, but I don't have time to deal with it right now. I am pursuing other options.

 

[evatious]

I take 5mg methimazole. I am not familiar with your med. at my last check, my T3 was normal. I have blood work coming up again in a couple weeks. They have to check my antibodies. I get migraines too, but not from thyroid issues. Sorry you are having to deal with that.

The migraines do completely suck but they're something I've lived with since the onset of puberty. Becoming hyperthyroid actually stopped them for the past year or so. Now that my levels are fluctuating so much, I go from no migraines for a couple of weeks, then 3 migraines over the course of the next 2 weeks and back and forth it seems to go. So basically the single positive side effect I had from the Graves is now just one more bunch of pain to deal with. So frustrating.

I'm still unsure if it is the Graves' disease itself or the meds I've been taking (or my change in diet) that has improved my CFS symptoms also - I'm far more stable energy and body-wise. It may be a combo, but something in my body has changed and either stopped or started whatever was causing the worst of my CFS.

 

[evatious]

I tried LDN at less than .5 mg (I had to split it myself). It made me sick and kept me up all night, even if I took it in the am. They say that stuff goes away, but I don't have time to deal with it right now. I am pursuing other options.

I hate having to split meds, it's just one more stressful thing. I really wish they'd formulate them in smaller amounts. I try to keep an open mind about side effects passing after a few days or weeks, but it's not sustainable if they're too bad or long-lasting. Not on top of everything else.

 

[daisybell]

@evatious yes, my GP specialist prescribed it when I asked to try it. My regular GP wouldn't, and currently I'm about to register with a new practice, so I'm really hoping that a new GP might be prepared to prescribe it for me on an ongoing basis....

 

[evatious]

Thanks @daisybell, that's really interesting, I'm going to bring it up next time I talk to my doctor/s.