[butterfly007]

in reply to: ** If you have ever gone into remission, please come in ** #1182650

In total, I was on carbimazole (methimazole) for over 2 years.
It took well over a year of meds to even get my levels into the normal range, then a little longer to get them to stay there.
After about 1 and a half years on meds, when my levels became stable ( t4 levels were on the low side of normal and only just in range, tsh also low, but consistent ) I started very slowly reducing my meds by super small amounts. After 6 months of this, I got down to a quarter of a 5mg tablet, every second day. My t4 was still low/normal and my tsh was in range, so I stopped tablets completely.
There were no antibody tests or any other tests done, and when I asked my doc to be tested he said I was in remission and for that reason refused to test me!
I have been off meds for well over a year now. My t4 hasn’t budged from low/normal and is only just in range, my TSH is also still at the very low side of normal, but they are both consistent each time I have a test.
I have no idea why both my t4 and tsh are at low end of scale – doesnt seem right. I’m just happy to be med free and though I still get symptoms I am sooo much better now than when I was diagnosed and have learnt to live happily even with some symptoms. I believe patience and lifestyle changes are the key.
– Good luck!!

[butterfly007]

in reply to: trying for remission – 6 weeks med free #1182511

Thanks Kimberly. I did ask my doctor about antibody testing and he said it wasn’t necessary – sigh! Maybe I could give him a copy of the guidelines, I don’t want to annoy him too much though. He doesn’t believe in T3 testing either, so we have an argument everytime I ask. He goes by TSH, so I’ve been trying to educate him lol We don’t really agree on much but he does listen to my points when I make them. I don’t think I’m his favourite patient, definitely a squeaky wheel! lol
I don’t do anything without his agreement though, and will now try be patient and wait another 6/8 weeks for the next tests.
Thanks!

[butterfly007]

in reply to: trying for remission – 6 weeks med free #1182512

Thanks Shirley. Yes – you are absolutely right, I need to stop worrying and be patient for a little longer…
It’s hard because it’s taken so long to get to this point – I really don’t want to end up hyper again. I do so hope for remission!
I’m in Australia, hence the Carbimazole.
Have been slowly reducing dose for around about the last 8 months. Have been doing so with my Doctor, but yes you are right – it’s definitely very much my decision. Prior to starting my med reductions, my doc was maintaining me at levels way too low for me,for months and months I was on the lowest number possible for FT4 – to still be ‘normal’ range. Had raised TSH, the works. I was living in hypo land – dizzy, foggy, sleepy, sore etc etc it was really, really horrible and he wouldn’t listen. I couldn’t lie down or stand up without going light headed! He said it wasn’t my thyroid and suggested I see a psych!! Long story short – Lucky for me I’ve had this wonderful forum with loads of information to help guide me through, and I got very stubborn. My doc was always pushing me to have RAI, I said NO! He finally agreed to let me try for remission first, and if I go hyper again, will have to decide on either RAI or surgery. So, 8 months later – here I am. Very very important few months for me coming up and I’m terrified! I don’t want surgery or RAI!
I actually feel ok right now, I’m a little tired and sleeping around 10 hours a night, but overall not too bad at all. My heart rate is fine, blood pressure is low/normal. My skin is a bit dry and seems thin, along with the hair loss and finger nails are ridged again.. But over all – most importantly for me – my head is clear, I can think! No brain fog..no sore muscles..I can mange a whole day without needing a nap, though very tired by afternoon.
Wow – have just realized, I’m actually not feeling too bad at all and yes,am probably worrying over nothing. Thanks Shirley!!!

[butterfly007]

in reply to: Gaah! Itchy again #1182227

Hi Renee, ohhh I really do feel for you! I remember the itching alright! Not sure I can help you but will share anyway. Around about 4/5 months before I was diagnosed, I got really really super itchy!! It drove me nuts. It got so bad I carried around and slept with a long plastic kitchen utensil/fork thing, to scratch with. It was a real major itch that made me physically jumpy. It didn’t dawn on me at the time there was anything wrong(duh!), and I managed to convince myself I had bed bugs or something – it seemed much worse at night! I even dragged my mattress outside and sprayed both sides with fly spray! (yep -crazy!)) Well, turned out it wasn’t bugs lol I was very hyperthyroid and my liver was in bad shape too, both due to undiagnosed graves. Good story is that once my Free T4/T3 levels finally became ‘normal'(this took over 4 months) and stayed that way – the itching stopped. I have noticed the itching has returned but not as bad, a couple of times when I have lowered my dose too much and ended up hyper. So for me, it could be the hyperthyroidism itself and/or my liver due to everytime I become hyper it affects my liver too. Mind, it doesn’t really matter which one as for me, they occur together.
So I’m wondering, what are your current levels and have you had your liver checked?

[butterfly007]

in reply to: lowered meds with confusing results #1181823

Thanks Raspberry, what you said makes sense about the level of graves activity changing. It’s also really nice that you know what I’m talking about – try having this conversation with a friend or family member and watch their eyes glaze over within minutes – ha ha. Wish I could get my antibodies tested but I don’t have a specialist anymore and my doc won’t test them yet. I’ve never been a patient person – graves has certainly helped me to learn, but it’s still not one of my strong points. I’m in Australia so I can’t order my own tests – or afford them. It’s been so hard to get my T3 and T4 to rise, without any big reductions in meds at once, and then the T3 decides to go even lower – yep fun fun fun!! lol I did notice that just with the reduction in TSH a lot of my ‘hypo’ symptoms have gone, even though my T3/4 are still on the low side of normal. Interesting.

[butterfly007]

in reply to: Initial dose of Methimazole? Antibodies? #1181293

Hi Kalty, When I was first diagnosed, one of my main complaints was that I had gained weight. I was extremely hyper – and absolutely exhausted all the time -all I wanted to do was sleep! I have had slow steady weight gain through this whole process over the last year. It’s absolutely possible to gain weight and be tired/exhaustaed with Graves and hyperthyroidism. It happened to me.
I think I see how you would not want to accept the diagnosis – it’s tough. I think I said before I went through a grieving process. It’s really dangerous and can be life threatening to not treat hyperthyroidism. It also slowly does a lot of damage to you if untreated. It’s really important you get you levels looking better. Why live with symptoms of hyperthyroidism when you can take a tablet or two and soon enough feel a whole lot better? It’s not that simple, but that’s pretty much how it works.
Keep us posted!
Rae

[butterfly007]

in reply to: Are Hashi and Graves antibodies the same? #1181299

Thanks Kimberley, that well and truly answers my question. I am a bit cognitively challenged at the moment – please excuse my rambling circles to try get what I want to say out. It’s a bit frustrating knowing there is no sure way to tell – other than possibly fluctuating levels on ATD’s. And even then – for me -if I get really stressed/sick/rundown it throws my levels out. Am currently hypo – (down to 5mg daily carbimazole.)
I really think it would affect my current choice of treatment, (to ride it out with ATD’s and try for remission or just maintainence) if I did have both. It would be heartbreaking to go years and years thinking I just have graves, trying to maintain normal levels on ATD’s, only to find my thyroid has been destroyed via Hashi’s and it was all a big waste of time/tears/frustration riding the rolercoaster trying for a normally functioning thyroid. If I knew for sure – I think I would have surgery straight away and avoid unnecessary rollercoaster riding.
And – even if I was swinging hyper/hypo – which seems to be the case – I still won’t know if it’s Graves doing the blocking, and is fixable – or if it’s hashi’s destroying my thyroid – ARRGGHH!
But then – with not really knowing – I hate the thought of removing a body part while there is still a chance of it being restored to normal functioning! – Tough one! – I think I think too much! – lol.
Thanks heaps for answering my question!!!
Kalty – hope this helps you too!

[butterfly007]

in reply to: Are Hashi and Graves antibodies the same? #1181297

Thanks Kimberley, that helped.
Kalty – thank you for rephrasing my question so it makes more sense!
I understand how Graves is diagnosed – and that TSI is graves specific.
My TSI was never tested, but I am not doubting my graves diagnosis at all.
What I am really wondering is – we know that the positive antibody tests used for hashis – TPOab and TGab, can also be found positive in some graves patients – so how do they diagnose Hashis and Graves together? Mine are high as below, how do they know I don’t have hashis as well? Is there another test they can do to either confirm or rule out Hashi’s?
Can anyone help? I am very curious.

What they have tested for are these:
TPOab – 142.6 (<34)
TGab – 441.6 (<115)
TSH receptor antibodies 10.1 (<1.

[butterfly007]

in reply to: Initial dose of Methimazole? Antibodies? #1181290

Hi Kalty,
You are not alone here. I had high levels of both TPOab and TGab too. Am a year in on my journey and I am still trying to understand it all. Do you know how your doc worked out you have both Hashi’s and graves? I was started on carbimazole 40mg a day. Am now down to 10 mg daily and am kinda stable with my levels. And now finally – Some days – sometimes – I even feel ‘normal’!!
Yes, I agree the treatment options all stink!! I definitely went through a grieving process during the last year, coming to terms with it all. For me, the hardest, toughest, lowest part was when I was at where you are right now – right at the beginning. However – it really truly does get better and easier to manage with time, for most people. Maybe not always pre -graves quality – but much much better than when first diagnosed. I guess my advice coming from someone a year after diagnosis would be to try be patient and learn as much as you can, before you make any decisions.

[butterfly007]

in reply to: mental and cognitive effects – article #1179859

Thank you Kimberley! I wasn’t sure about whether it was ok or not…
Thanks for your reply Raspberry. You are having memory issues too huh, sorry to hear that, I know how hard that can be! Sounds like you have an Endo who does at least have a clue, that’s good!It just seems that there is so much varying opinions and thoughts out there…one study and/or Endo says one thing, another says differently…in the meantime, here we are trying to live with these symptoms that are or aren’t recognized, depending on who you ask!
As for the maintenance dosage of 20mg..well er ummm, I learnt the hard way there. I recommend to anyone planning on adjusting their medication dose, without talking to doctor or endo first – Don’t do it!!!! I am now at the lower end of normal and staying that way now, and yes Raspberry I think you are right about being too low…but will anyone listen to me..no! A while back I got sick of living like this, tried to get my doc to reduce my meds, he said no…I then stupidly decided all by myself, to reduce by 5mg every second day, just a tiny change I thought…well…I ended up hyper! Lesson learnt. It seems the slightest change really does make a difference, and sends me hyper, so will stick to the 20mg.
Off to work now, yay it’s Friday here! Am in Australia so it’s morning for me.
Take care, be back later!
Rae

[butterfly007]

in reply to: How do you stay calm? #1178956

Hi Karen. I haven’t posted for ages, but have been following your posts. The ‘mindfulness’ techniques that were suggested, can be easy to use, can be used literally anywhere and some have really worked for me in the past.
Another simple, easy and actually helpful technique is meridian tapping. Once again that can be done anywhere.
Other than that, just want you to know I am in awe of how strong you have been to get through what you already have, and I am thinking of you and wishing you well!
Rae – (I was under the name of rae5)

[butterfly007]

in reply to: cold red wrinkled fingers, small blisters #1178896

Ok, I just looked at Raynauds – thanks Talley!
This is what I found on causes of raynauds in the mayo site…

http://www.mayoclinic.com/health/raynauds-disease/DS00433/DSECTION=causes

‘Certain medications. Some drugs — including beta blockers, which are used to treat high blood pressure; migraine medications that contain ergotamine; medications containing estrogen; certain chemotherapy agents; and drugs that cause blood vessels to narrow, such as some over-the-counter (OTC) cold medications — have been linked to Raynaud’s.

‘Other causes. Raynaud’s has also been linked to thyroid gland disorders.’

Interesting! Yes it does sound like what I have, will make this ‘suggestion’ to my doc…once I know what it is, I can stop worrying about it and chalk it up to another ‘thyroid’ thingy! lol
Rae

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