Graves

GRAVES DISESASE - 10 YEARS ADDIVERSARY - 40TH

Oh my God peeps, it's been such rough years. This will be long, bare with me and again English isn't my mother tongue, will do my best. Fall of last year I finally got the explanation, Graves disease. It's funny, life is funny and my body is very creative in finding ways to try and kill me. Morbid humor, get used to it.

When I turned 30 I was dying, slowly dying of Addison's disease and no one could figure it out. I was simply not in my right mind, anorexia, depression, whatever. Boom, autoimmune and in deadly danger. 

Last year, I turned 40 and boom, next autoimmune disease knocked on my door and said "hellooo". What will happen when I turn 50? Let's leave that for the element of surprise shall we. 

So, backing up. I believe it was already as far back as in April/May 2024 that I started feeling blue. I thought it was just that, feeling blue, depressed, down, off track, out of balance… all due to major changes in life such as leaving my pole dance teaching job and switching several day jobs in search for a new workplace since I left my last one of 6 years in 2023. However, in January 2025 my Endo and I discussed this "down" and that I'd also gained a lot of weight in short time. (Think I'm up about 8 kilos, haven't dared to check in a while, that's on next weeks horrifying agenda). She said that all of this could have a physical explanation as well and not all be due to life style changes and "blues". She suspected a thyroid issue. We did all the blood works. Nope, the thyroid looked fine. I had another appointment later that year, in September I think, to check up on how I was doing and now the blood work did not look so great thyroid wise. But of course, since it's me and my body, they did not make sense either. The thyroid did show tendencies for hyperthyroidism but my symptoms (such as my weight gain) were the opposite. Take into account I already live with Addison's disease and medications for that so this might be factors that make it harder to diagnose and understand what's going on in the body, at the same time this is what made us find this in good time due to regular checkups. More blood tests it was. After a while they did conclude that I do have Graves disease

First meeting in regards to this was pretty scary, eyes can suffer damage, I was told I was gonna go on VERY strong medication which they equated with chemotherapy. If the medz didn't work or side effects got too severe I would have to try and change medz but also possibly go into surgery. We also could do lot's of different types of medication plans but there was no way of knowing which would be right so we were again to do trial and error and try to find what my body would respond to. All of course while monitoring side effects closely. If too severe we would have to abort and go to surgery or radioiodine treatment for thyroid removal and then I'd have to live with hypothyroidism for the rest of my life. Medz were prescribed and I had to pick them up and start treatment immediately.

And boy oh boy has this been a circus. Mostly I've had very nice Doctors that I've been able to discuss with and communicate well with but they're all very busy so a lot of different ones during these months and some not so... open for discussion. We changed the first medz plan due to my liver not doing to great (no shit Sherlock, it was dealing with so much medz it worked overtime and just said NO). Then I was feeling freakingly GOOD, but nooo, the blood works started to lean over towards hypothyroidism so then we changed it again… against my will... I did not respond well, as I predicted, I was reluctant to this change and understood I wouldn't respond well, and theeeen we changed it again according to my wishes and NOW... blood works are good, and I'm feeling OK. I am no longer in a toxic state.

To explain the above a bit more. There are two types of treatments you can go for. Block & replace where you block the thyroid completely with thyrostatics and then add the thyroid hormone yourself in form of medication (pills, Levaxin) this is the form of treatment preferred when you have an impact on the eyes which I had. However, my impact was not very significant, I have been a regular with the ophthalmologist as well during all this time and they have been checking my eyes very thoroughly and monitored me closely. I did not respond well to this block & replace treatment and I myself felt that this was not a fun choice. Levaxin was tricky to administer into my daily routines and I did not feel good at all on this treatment. The other treatment choice is only block, you then block a certain percentage of the thyroid instead and do not block it completely. Meaning you only take thyrostatics, no Levaxin (hormones). This is not optimal treatment for the eyes, but since my impact wasn't significant it worked for me. The tricky thing here is (like with Addison's disease and cortisone) that the dosage can't be measured and you have to work with trial and error and perform blood tests regularly to find the correct dosage. Which we hopefully now have.

I still don't feel 100% like myself but I am now pretty fine considering how it's been. I do feel affected a little bit from side effects like itching and rashes but they are not severe and manageable with allergy medication. The other week I also got a very extreme pain in my foot, I couldn't flex my toes or walk without a limp. It spread to the outside of my calf, hip and even my hand and arm on my right side went numb for a bit. No explanation for this by the Doctors and it just went away in a couple of weeks. I have some lower pain left in my foot and toe but now I can flex my toes and walk without a limp again. Side effect? I have not been moving or training or hurt it in any way... unexplained. Still a bit tired but not completely exhausted anymore and my energy is slowly coming back and is with me most days. Being in a non-toxic state also gives me the go to start training again. Not that I have been completely off... All through summer and until mid November I was still teaching pole dance classes. It was good for the soul but maybe not the smartest choice physically. It was a challenge! Just about a month after I stopped I took a turn for the worse so thankfully I quit in time and didn't have to cancel any booked classes or change plans for that. Since Christmas I've mostly been sitting on my ass on my couch exhausted and not been doing too great. It just turned around in mid February and I'm hoping it now will last. My eyes are signed off by Neuro and they will not need to see me again in about 6 months or so. Meeting Endo next week and we'll see what they have to say. Clear for training, but with some orders of taking it easy and maybe not sign up for any races or anything. How did they know? Haha!

To explain the training and why they've recommended me to take it easy and why I haven't trained so much before and during the diagnosis. Hyperthyroidism puts your body in a high alert state, Everything goes hyper for real, you're in constant stress. I have been EXHAUSTED. My resting heart rate turned out to be quite increased. I'm no cardio fan but I checked my Fitbit data after diagnosis and it was through the roof! The Doctor also prescribed me beta blockers at diagnosis. He asked if I'd had problems with heart palpitations and I surely answered no. I did however admit having problems with shortness of breath from doing hardly nothing, like walk to the train in slow pace and that I had troubles going up the stairs without stumbling (probably due to the eyes being affected). But I tell ya peeps, when I tried one of those suckers my whole body went like "THANK YOU" and just relaxed like the air is released from an inflated balloon and I finally felt at ease. So yeah, maybe… I did have some heart palpation issues but when it comes at you slowly you just don't get it. The body adapts and it just turns your new normal. So, you who have done the math, an overworked heart might not benefit from training and need rest. Also, it's not the best thing to exercise on beta blockers… I'm off them now and my resting pulse is almost back to normal, a bit elevated but not much, so I'm better now and have an official OK to start pushing it a bit.

Another symptom we must talk about that I had serious issues with was heat intolerance. I was so sweaty you guys. When at the office (yes I never took a sick day… Finnish.. stubborn… idiot?) I arrived all wet and smelly. Hair wet, nose dripping from sweat… What I had done? Walked to the train for 7 min then to the office from the train 10 min, slow pace…. like I always do without effort. I was waking up sweaty, walked around in September outside in a t-shirt in the center of Stockholm while everyone was in winter coats looking at me like I was insane. Haha... well… that too has improved and I'm now back to my more normal state of heat tolerance, my sanity we can discuss. This was really unbearable to live with. Out of breath and dripping of sweat, just by doing ANYTHING else than sitting down. Nightmare!

So.. in summary. It's been a wild ride and it aint over yet but I believe Endo and Neuro has helped me avoid surgery. I'm not a candidate for the radioiodine treatment due to that my eyes have a bit of impact. After some time, as I understand it 1,5-2 years, the plan is to try and get me off the medz and that the thyroid should be doing the work on it's own and be functional again. If not... (50/50 risk/chance) removal is the way forward. I am really hoping the thyroid will be restored to normal function and that I can continue through life with "only" my Addison's. It's more than enough to complicate life!

And on that note, let's end this post with that this year I am celebrating my 10th Addy anniversary and I'm still very thankful for being alive. Grateful for the little things. But, please, can we stop giving me these challenges of life… my fighting spirit really has been hard to find this time around and I am TIRED. Never take your health for granted peeps, it's ALL your life revolves around when you lose it and I would not wish it upon someone else ever.

This too shall pass, and my next challenge for this year will be the comeback to active life. SLOWLY they say, EASY they say, DON't sign up for Vasaloppet they say… no risk, I hate cardio. BUT I did sign up to try a new type of dance class tomorrow... I will get back to you on that. 

As always, more updates on Instagram. Hit follow if you're interested. 

Until next time.
//Kehlan out!