[RebeccaJT]

#1058634

Hi Folks

Just a quick line from me, as I’m hoping some of you will identify. I’m now in ‘remission’ on ATDs after almost 18 months of incredibly tough treatment, with levels fluctuating (along with my sanity, emotions, energy levels and weight) for a great deal longer than I thought it was humanly possible to endure! You know what I mean I’m sure.

Anyway, I have a brilliant, kind, interested, and compassionate GD doctor and he has insisted on very regular monitoring, and a tight titration of dose, so that I’m now on 2.5mg CBZ daily, down from a whopping (and frightening) 60mg per day. Since early Sept we’ve been dropping by 5mg every two weeks, and my levels have continued to fall (which I assume must be good news, in that the underlying immune attack must be calming?).

My TSH is now measurable for the first time – last reading 0.6 (ref 0.3 – 5) with T3 and T4 at the low end of normal – up from hypo. My doctor says that ‘normal’ ranges are merely a population distribution, not a diagnosis, and that they are misused by a lot of doctors in GD treatment, who just tell their patients they are ‘normal’ without listening to symptoms. So I’m being heard – and he knows that I’m still too low, so from tracking back through previous results we are aiming for a T4 between 19 – 22 (Ref 9 – 24).

My TSH did go up to 2 originally and I’ve had to endure being significantly hypo for several months to get it to kick back in – so I’ve now gained nearly 60lbs, and I’ve just been dragging myself through the days in a FOG of exhaustion and mental blankness, muscle weakness etc etc. My life is unrecognisable and my quality of life is currently very compromised. I also find that the more hypo I’ve become, the more some of the symptoms seem to mimic hyper – anxiety, sleeplessness, tiredness, agitation, and a different but similar kind of ‘shaking on the inside’ feeling – not tremors, more like pins and needs in my hands and feet?

Anyway, I’ve just done three days of no meds at all and then 10 days of 2.5mg CBZ daily – and I’m still constipated, gaining weight, and feeling incredibly tired. My levels did rise a tiny bit (as explained above) but we are not sure whether they are now falling again as I go back onto a steady dose. I’m due a blood test again on Friday this week and doc says that if my TSH has gone back up to 1 (from 0.6) he’ll put me on 2.5mg three times a week (ie every other day) but for now preventing relapse is the most important thing.

I’ve also had temporary worsening of eye symptoms – my TED is really settled and whilst I have continuous double vision and need to wear a prism, it hasn’t shifted for months and months. I had one day last week when my eyes were really obviously moving forward. An SOS call to my endo reassurred me that this was normal as my levels shift, my thyorid is well and truly under control, not to panic and to up my TED eye care. He was right, within 24 hours these worsened symptoms had vanished. It was all most strange!

Basically my question is this: what should I expect from ‘remission’. My euphoria on receiving the news that I am in remission has given way to worry and disappointment as I actually feel worse as I yet again ride the hormone rollercoaster, and I continue to get fatter and fatter (I hope this doesn’t offend anyone but I now walk with a waddle as my thighs rub together, I was a UK size 10 (a US size 6) a year ago! I am really having a very hard time adjusting to such a radical change in my appearance, particulary as I have eye involvement which has totally changed my face – along with the double chin!!).

Can anyone guide me on what to expect? What’s the healing process like? What’s ATD remission like? Don’t get me wrong, I know I’ve made progress and I really do know that even all of this is better than being hyper (I was SO ill, nothing can be that bad!!) but I suppose I didn’t really think about what would happen when I reached the promised land of ‘remission’.

Many thanks in advance, I don’t know where I’d be without this forum, there is not a great deal of support for patients in the UK.

Kind regards

Rebecca

[Kimberly]

#1169113

Hi Rebecca – I sent you a PM as well, but thanks for checking in!

Hopefully, as you get your levels both normal *and* stable, that will help get you to feeling well again.

The weight issues are *very* frustrating and I wish I had a better answer for you there. Getting your levels stabilized will help, but weight seems to be an ongoing challenge for many of us. We did a poll over on our Facebook site a while ago, and the vast majority of people who responded said that weight loss was "extremely difficult" post-treatment. I wish this is something doctors would pay more attention to!

Take care — and please keep us posted on how you are doing!

[annax]

#1169114

Hi Rebecca,
This is my first time posting in the forum but I have found reading it, over the last few years of my journey, very helpful and would like to contribute back and perhaps provide some help to others if possible. I am not sure if my story will help you but it might give you some idea of what my remission has been like.

I was lucky to have been diagnosed with Graves Disease fairly early in it’s development. I started on methimazole within 3-6 months of a huge climb of my levels. I took the drug for about 18 months and was able to achieved remission.

Initially I felt great. My hair had stopped falling out, I had energy and could work out regularly again. My anxiety had diminished along with my aches, pains, brain fog, etc. etc. But after a month or so I started to notice my hair start falling out again, my eyes were extremely sensitive to light and blurry, the brain fog and inability to concentrate seemed to be returning. My blood work kept coming back in normal ranges despite my array of symptoms and I got no feedback from my specialist on what the symptoms could be from, other than "not thyroid related" since the numbers were good. And although I was able to workout regularly and eat fairly healthy the scales didn’t budge.

I ended up with a bad case of vertigo which was accompanied by all sorts of eye sensitivities and odd headaches that felt hot and fuzzy at the back of my head. I was given vertigo medication which helped but made me feel sick. I read that vertigo can be caused by allergies, so I tried allergy medication instead and it worked great. No sick feeling. I took the antihistamines for a month or two, then stopped. Seemed to feel fine for a while but the symptoms started to come back, this time with increased anxiety and chest palpitations. Blood work, again, turned up great…

After some digging around online I decided to do a cleanse to see if it might be toxin or diet related. Something had to give! I followed the Master Cleanse and after 24 hours felt wonderful. Fabulous even. Better than I had in years. I completed the 10 days of the cleanse 5 weeks ago and started reintroducing items into my diet. Everything seemed to be going well until i tried wheat (bread). Within 30 minutes of having multi-grain bread i got dizzy and my head started to pound. I went to bed and slept for 3 hours, woke up, my head still pounding and had to go back to bed for the night. I have self-diagnosed myself with a gluten intolerance, which seems to be directly related to autoimmune disorders perhaps a trigger even. Since my cleanse i have felt great unless I eat gluten, sugar or caffeine. (Sugar and caffeine make my heart race). I have lost weight, working out 5 days a week, and finally feel in control of my body mentally and physically for the first time in years. I am sure not everyone with Graves Disease is Gluten Intolerant but i would encourage you to look into it and Celiac Disease if you find some of your symptoms persist.

Folks here know what you have, and are, going through. I found it to be a lonely journey so please let me know if I can be of any comfort to you (or anyone else).

Best,
Anna

[CMoore124]

#1169115

Hi Rebecca,
I have been in remission from GD for a year now. I was severly hyper and had a horrible time. Phobias, anxiety, panic etc all the symptoms possible – I had! I was on PTU for 4 years and pretty much the last 2 years was a steady low dose. On summer of 2010 dr told me PTU had a warning issued on it and maybe I could try to come off of it. They tested my antibodies and thy were low and almost zero!! That made my remission chance higher. So I came off in oct 2010. Ive been off of it since and feeling great. But recently I have been experiencing a ton of pvc’s and Dr’s say they Are benign. My levels continue to be in normal range however they have always been in lower normal (.45-.7) just wanted to share my experience. Good luck

Christina

[katherinesc]

#1169116

After my dx of Graves 4 years ago and much research too, I went “gluten free” for approx. 4 mo. and felt AWESOME. I found gluten free to be too difficult to maintain and went back to my old habits, only to feel worse than I ever have since reintroducing “gluten” back into my diet. I really think there’s some correlation, but it’s a very difficult regime to maintain. If someone finds “gluten free” easy, please, please refer me to a book or something to help me along this path. Like I said, “when” I was eating gluten free, I felt like one in a million with no issues, honestly.

[Mariaspratt]

#1169117

Hi Katherine,
I now eat totally gluten free. But, I wish that I had done it properly a long time ago! It started after a two week south beach diet that cuts all gluten out…and I realised that my stomach was fantastic. I have always suffered from a very erratic stomach(diarreah). After the diet I tried to go gluten free for the most part but cheated a lot. The thing is I knew that I was doing damage to myself because it made me feel bad…but I still cheated. Well, so more recently I went to a GI doctor and he said “you are gluten intolerant and it’s very difficult to be gluten free, so if you can’t then we have to give you medicines to help you.” well, being very anti-taking any kind of drugs if I didn’t have to I went totally gluten free. But, it was too late…7 weeks later, after feeling so crappy, I was diagnosed with GD. I really wished I had gone Gluten free strictly way back when I noticed it made me ill, the first time!
Here’s the thing, if you continue to eat something that makes you ill, you will continue to be sick. There are little tiny villi in your stomach and when you eat gluten and you are intolerant to it you wear them down. If you wear them down it can also lead to lactose intolerance…and that is even harder to do. I urge you to find a book called ‘An idiots guide to being gluten free’. She explains very well and makes it simple. I promise you will get used to it. It takes alot of willpower but you will find alternatives. Its worth it. I promise! Hope I helped!
Maria

[Harpy]

#1169118

RebeccaJT
Do you have any recent test results of Thyroid Recepter Antibody levels?, sounds like they would still be a bit high if you are still feeling recent eye symptom activity.
Just to mention in regards to the Med’s, there is belief in some GD circles that the Med’s actually also help reduce antibody activity, so coming off the med’s too soon after getting thyroid levels stable, allow the antibodies to flare up again and there is a relapse. To address this some use an “Add Back Therapy” of thyroid hormone suppliment to keep hormone levels stable whilst continuing the medication, this is a variation of the “Block & Replace” treatment where higher levels of meds are used to completely block thyroid production and supplimentary hormone is taken to keep serum levels normal. You are fortunate to have a doctor who is so attentive, do some research and if you are comfortable ask your doctor about it.

In regards to “Gluten” & diet in general, there seems to be a lot of anecdotal evidence that this aspect may at the very least be an aggravating factor in not only Graves, but a vast number of, if not all autoimmune diseases.
My partner made significant dietary changes as part of her treatment and is convinced that they had a significant impact on the course of her disease. In recent times I have been broadening my reading on other autoimmune discussion groups and am convinced enough that I decided it was time to change my own diet. I always considered my self relatively healthy and just went for the ride with my partners changes, now I am the one driving the change. After a month or so I have noticed a number of changes, the bigest one being in the realm of circulation & thermoregulation, all my life i have had an issue with night sweats, cold hands and feet, I just figured that was who I was, well that’s all gone now. There are a number of other subtle changes as well, you don’t think of these things as issues until you realise they are gone. I also have mild Psoriasis, so have taken pic’s and will be tracking the progress, but even if the improved circulation is all I get, it is enough for me to stick to it.

As for the difficulty of adherence to the a diet, I do understand where you are coming from, although i don’t have a problem, but my partner does a bit, she needs the aesthetic appeal as well and clings a bit to what once was. I think it comes down to how you view it whether it is a “way of life” or a “diet”, if you need to substitute all the gluten & processed carbohydrates with a lookalike all the time it is going to be hard, but if you can let go of your preconcieved opinions of what a meal should be then it becomes a lot easier. I just don’t use bread or dairy (except a bit of yoghurt), we do make a little bit of almond milk and some simple non cereal flat bread, which is easy and keeps some normality for my partner. I am happy enough just loading up on fruit, veg & meat and using dried fruits, seeds & nuts as little snacks, for me I think it also makes a big difference knowing what does what, I think that also helps shape your desires and cravings. I don’t get sugar cravings any more and don’t feel hunger pains either or feel completely stuffed after a meal, I think processed carbs play a big role in promoting the “feast & famine” feelings by sending our insulin levels on a rollercoaster ride.

On another note, Vitamin D levels are worth checking they seem to be low in a lot of autoimmune disease circles and may also be a contributory factor.

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