Let’s face it – Graves Disease is horrible for anyone unfortunate enough to be diagnosed with it. I have lived with the disease since August of 2009. Sometimes I find that the more I read on the internet about my condition, the more depressed I get. I think it is crucial to have a spot to hear of positive stories about living with Graves, or at least ones focused on “hope” and “optimisim”, hence the ironic name “Great Graves”.
I am a female in my early 30s living in Ontario, Canada. This is my story about life with Graves Disease and Thyroid Eye Disease /Graves Ophthamology while trying to grow my family, deal with treatment options and live a “normal” life.
Fascinating reading your blog as it seemed to mirror a lot of my symptoms for this past week.
I admit, my diet is not great. I used to be a vegetarian and even today am not that keen on meat. I eat chicken and fish but never red meat…plus with my busy work schedule, I’m the kind of person who would live on toast and carbs if I could! I had a terrible bad cold a few weeks ago and because I was taking Sudafed, started to feel very foggy-brained, so I stopped it.
But the foggy brain didn’t go away and then I started to have muscle twitches all over, accompanied with pins and needles. The pins and needles were like little short bursts – so a tingle at the end of my nose, and then my thumb and then right arm/left leg. Taking an anti-histamine briefly helped and then as I started taking high dose of multi vitamin this week, the brain fog started to clear.
But the on/off patchy tingling hasn’t stopped and then last night, I woke up with a racing heart and tingles all down both legs. I didn’t know what to do! My cousin (who was awake) and who suffers with hyperthyroidism tells me that it could be PA and or hyperthyroidism as it ticks all the boxes. Plus my granny had HT (apparently) and PA is also thought to have some connection to rhesus neg blood types (I’m A -).
So, it’s Saturday today and I don’t feel it’s serious enough to go to the emergency room but I will be booking myself in to see the doctor on Monday.
For the past three weeks I’ve been on a no sugar, no starch diet and it keeps my symptoms in check. I get tons of white stuff in my stool. It feels like something is feeding on the sugar now and I’m back to thinking it’s some kind of bacteria, fungus, parasite, but most likely Candida, due to the white stuff. But it also feels like it’s outside of the digestive track and each time I eat sugar it flares and circulates in my body, if that makes any sense. I get another upper GI scope in June, but I’m hoping that a course or two of anti-fungals or something might do the trick. I can’t eat carb-free forever. I’m already starting to crack! I think this happened when my thyroid when into remission and I was mildly hypothyroid for a while. I think the change allowed whatever this is to fester.
Thank you so much for starting this blog. I swear it’s like reading pages out of my own diary. Please (please!) keep writing.
Like you, I saw so many doctors and specialists and never had any answer but “It’s in your head; take this anti-depressant.” Like you, I had to research it for myself before I finally started to feel normal again.
Since all my many tests have been (thankfully) negative or normal, I’ve concluded (for myself, but maybe for you, too?) that I’m suffering from adrenal fatigue. I’m just burnt-out and not giving myself proper breaks. Before kids, managing stress was so much easier. After kids, yowza!
Some treatments that have worked for me so far are:
• stress management (walking, yoga/meditation/deep breathing, mini-vacations, time management, setting boundaries),
• sleep management (Benadryl as a sleep aid, creating a cave-like sleep environment, going to bed and waking up on a set schedule every day),
• a Paleo diet (like you, I had to learn how to cook and now I actually enjoy it) — plus, I preceded it with a one-week anti-Candida diet and seven-day course of probiotics,
• IBS stretches/exercises,
• daily supplements for magnesium/D3/K2/vitamin C/B12, Tylenol (I love coupling magnesium with a glass of chocolate milk),
• EFT/Tapping, and
• laughing until I cry.
I’m doing a few other things, too, but I think they’re specific to me, not you, based on what you’ve written here. Still, maybe something here will help you. Just a little something in return for your helping me through your blog-journal.
Thank you again for sharing your journey with others! We do appreciate it!
Lisa
I have found it amazing to learn that there are many of us in this situation, with no diagnosis. I am thinking of trying an osteopath, but I just have honestly given up hope of finding a cure from someone else. I know I need to add more exercise back into my day – I used to be very active and this has really sidelined me.
But yes, little by little, things have gotten better. Pregnancy, thyroid and stress appear to be the trigger. I honestly think there is some sort of autoimmune component, like a new allergy to foods.
Hearing from people like you makes it easier too, knowing I’m not alone!
Thank you for your blog. I was diagnosed with Grave’s/hyperthyroidism in September of 2012. I should add that I am in the U.S. and in the Army, which adds to the fun of living with Grave’s. It was only a few months after my son was born, when I found out what this was. It took about 5 doctor visits, tons of blood work, stress test, ultrasounds, and finally a face to face with an endocrynologist to get to a diagnosis. The first doctor (family practice) I saw said, that all my symptoms must be related to nursing, and that if I stop breastfeeding and drink more water all my symptoms would go away (my pulse being 200 when sitting at my desk, passing out when doing routine exercise, fatique, anxiety, sweating like a pig, issues with my eyes, etc.etc.). I am so glad, that I’m not that stupid to listen to the first doctor I saw. I have been on meds since 2012 (PTU/methimazole/PTU again). I breastfed my son, while I was on PTU and then later on methimazole for 18 months. Poor thing gave so much blood in that time period that now he’ll scream and kick as soon as he sees the doors of the hospital. Some of my symptoms have improved on meds (I don’t take beta blockers any more, but I also don’t run as much, for example). Other symptoms have gotten worse, especially now that I am 13 weeks pregnant (for a second time). I spent some time today trying to figure out the foul urine smell and was very much reassured to hear that you had this with PTU as well… It is small victories that count. Hope your Grave’s is still in remission and that your daughters are doing well. I am very worried about side effects of my meds that could cause hyper or hypo thyroidism or goider in a baby (especially from me taking methimazole for about 4-5 weeks before I knew I was pregnant). Wish me luck:-)
I remember the feeling of hopelessness with my diagnosis. Doctor’s can’t tell you anything about the progression of the disease. I was asked to destroy my thyroid right away. I’m still in remission today, even after another pregnancy! My daughters are lovely, thank you! So grateful that everything worked out.
I would ask to have your b12 checked if you’re really tired. Mine were quite low and getting injections made me feel much better. I think the chances of going into remission are better on drugs than they let on. Maybe I’m just lucky, but remission came within about 2 years of my diagnosis. I remember weaning off the PTU. My dry eyes were the last thing to go into remission. How are your eyes?
Best of luck on your Graves journey. I’m wishing it goes into remission soon!
I was just reading all of your symptoms from the b12 deficiency. I literally could not explain MY OWN symptoms better. I even told my therapist I thought maybe I was a hypochondriac and needed help it was so severe. It just feels good to know someone else has had this happen, I just two weeks ago got my first shot and cannot wait to feel better. I also bruised very easily, but the past couple days I can also feel my heart beating. It’s weird, even if I just walk upstairs my heart pounds 😦 I hope you are feeling great, and hello from Watertown NY! Not too far away!
Always,
Lariana
Hi Lariana. It took me well over a year to figure out what was going wrong, and it’s more than b12. It’s a combination of dysautonomia/POTS (postural orthostatic tachycardia syndrome – low blood pressure, fast heart rate when standing – feeling faint), and adrenal fatigue (makes hormones which regulate blood pressure, fight/flight response. When symptoms first started, my blood vessels were very dilated, body over produces adrenaline or noradrenaline, which lead to numbness and tingling. This left me exhausted, but unable to sleep.
Eventually, adrenals got fatigued and stopped over producing. Then I was getting hot sweats. Couldn’t stand for long periods of time without getting fatigued. If I was active for an hour, I would need two hours to recover.
Getting on anti-anxiety drugs helped a lot. It apparently helps reset the brain (autonomic nervous system). Research dysautonomia. I’m not explaining it too well. 2 years later and I’m better but still symptomatic. I read that it takes 2-5 years to recover and some never fully do recover. Here’s hoping we are two of the lucky ones!
I have been suffering from Graves Disease for 2 years now, but did not realize that I had it until about a year ago. I am taking PTU and am thinking I want to have at least 1 child (I’m in my late 30’s) so I do not want to do RAI and ablate the gland altogether (and be on meds for the rest of my life either). However, my symptoms have subsided a lot, except for my brittle hair and the bothersome eyes!! My right eye looks like it’s about to pop out of my head, and the left eye is puffy and small 😦 This is very upsetting because I work in media and find myself constantly talking with people. My self esteem has gone down the tubes, and even though my symptoms ie moodiness, shakes, etc. have gone away, the eyes are really bothering me.
I was on PTU for about 2 years before I went into remission. I also didn’t get RAI because I wanted a child. I’m so glad I didn’t. For starters, PTU helped my eyes. RAI may make the eyes even worse. Also, hypothyroidism makes pregnancy even harder. You needed extra thyroid hormone during the first trimester. I have a hypothyroid friend who cannot get pregnant. I would try the drugs for at least 5 years to see if you go into remission too.
Also, my eyes bothered me more than all other symptoms combined. Again, after about 1 year my eyes got better. If you can get decompression on your one eye, go for it. In the meantime, please know that it gets better. It will end. I know that’s little comfort when your eyes bug you every second of every day. But sitting here right now, I feel totally cured three years after it all began.
Good luck!
Email me back, if you’d like!
Hey there. I came across your blog when researching b12 deficiency symptoms. I have been experiencing extreme fatigue since my son was 5 months old, and he’s almost 2 now. Just recently, maybe 2 month or less. I have been experiencing tingling, and crawling feeling on my face, neck and thighs. I just wanted to let you know that I’ve read some bad things about b12 shots. I’ve read that they can have bad reactions such as you mentioned. You should look into it. Have you heard of Healthy Habits B12 patches? They use Methycabolomin, and appose to cyanidcabolomin. Obviously cyanidcabolomin
Is cyanide, and not a natural easily absorbable b12. Methycabolomin is a natural, highly absorbable b12. I think that the b12 shots you are receiving are cyanide, causing your symptoms after the shot. The
Patches I’m taking are definitely helping. They give 1000mcg of Methycabolomin in a patch that you can wear for a couple days. A lot of people have said this has replaced their shots. Hope this some how helps you. Take care.
I also take the methylcobalamin sublinguals. I seem to have normal levels now, but I still supplement with pills to make sure. Being low in B12 is not fun! Thanks for the info!
Hello!
Love your blog!
Have you heard of the int’l thyroid patient petition for better care?: http://www.change.org/petitions/endocrinologists-patients-with-thyroid-dysfunction-demand-better-care?=1&fb_source=message
Only 8wks old, and has over 3000 signatures of support from 65 countries. Our goal is to every patient aware of this opportunity to self-advocate. We all know we need change and it will take large numbers to effect change.
We are also trying to unite all of the thyroid bloggers and websites and gain their support to help us strengthen our global network.
If you can help us reach your members by blogging about us, we will gladly list you as a supporter. https://www.facebook.com/notes/patients-with-thyroid-dysfunction-demand-better-care-petition/websitesblogs-supporting-our-ptd-petition/344493798956111 https://www.facebook.com/notes/patients-with-thyroid-dysfunction-demand-better-care-petition/noteworthy-individuals-supporting-our-ptd-petition/343704432368381
Here is an interview by Sarah Downing to help you get to know us better: http://sarahjdowning.com/2012/06/05/interview-with-the-initiators-of-the-petition-patients-with-thyroid-dysfunction-demand-better-care/
Thank you in advance for your support,
Michelle
Michelle T. Bickford
Author
Patients with Thyroid Dysfunction Demand Better Care
http://www.facebook.com/thyroidpetition
Hi
I was diagnosed Aug. 2009. I have not had a good Dr. an have stopped seeing the Dr. my skin is itchy and bumby my attitude is NOT the best..but i need some help….natural remdies for my skin and stress relivers for my attitude….
xo
Hi!
I just found your blog about pregnancy with Graves Disease and I’m glad you are blogging about the topic. I’m a 31 year old female who has been battling Graves for the past 5 years. The disease has gone into remission 2 times but for the past couple of months it flared up again and I’m currently treating it with Methimazole which seems to work pretty well for me. My doctor recommended getting the radioactive iodine treatment specially if I’m planning on getting pregnant in the near future. I’m not sure what to do, I don’t want to destroy a gland that is working perfectly (since it’s just reacting to the auto-inmune system’s attack) but I also don’t want to take the risk of going trough pregnancy with hyperthyroidism and having complications with the baby… in your experience, did you concidered having RI done before pregnancy? would you have done it now that you are dealing with the symptoms of having a hyper thyroid or would you rather keep your thyroid and manage the symptoms during pregnancy…
thanks for your comments!
Since I found out I had Graves during my last pregnancy (which I lost), I did not want to wait a year to try and conceive. My endocrinologist said he felt 6 months was too short a time to wait, and if it was his wife, he would wait at least a year before trying to conceive. So, that ruled out RAI for me at the time. I considiered surgery and had since learned of many people with complications (damaged parathyroid glands). I feel pretty good on the drugs. Now starting week 15 my thyroid has settled down again to levels I’m used to. I think if my thyroid continues to get worse, I will consider RAI, but probably after I’m done having kids (I’m expecting my 2nd and would like a 3rd). I have yet to find anything useful about Graves and pregnancy online or even from my endocrinologist, so I wanted to keep track of my experience for anyone else going through the same thing. Apparently, in 1st trimester, all women have increased thyroid function, which can cause increased symptoms for GD patients. Second trimester is supposed to created a semi-remission state, with symptoms worsening after birth and settling down again eventually. I have friends with a strong family of thyroid disease, and they have all chosen to got the ATD route. For some women, their thyroid dies out on its own eventually. You probably know all this since you’ve had it longer than me, but I have found other GD patients the best source of information since my doctors all say, “you never know with thyroid disorders. Everyone’s different.” Very helpful, thanks 😦 Anyway, good luck and I’d love to know how it all works out for you! I’ll keep blogging so you can see how it works out for me on PTU!
good for you for keeping track of your story. i have found that my story has helped people going through Graves. kudos to you and hope you reach remission like i did!
Just reading some old comments on my blog and I am happy to report that my Graves Disease is currently in remission. Here’s hoping it lasts!