Hi. I normally don’t like to post my fears for the world to see but wanted to see if anyone else struggles with this. I was diagnosed with T1D when I was 11. Up until the last year or so, I’ve had a super optimistic outlook and have had nothing out of the ordinary happen but now I’m scared of other autoimmune diseases. I just found out this summer that I have hypothyroidism and I know that’s not a big deal in itself but my mom also has MS and for the last four months I have been having muscle twitches in my calves and random muscle pain mainly in my shoulders and legs. This week I’ve started feeling tired in the legs. I’ve talked to my doctor about the fear of MS, but they don’t think it’s that at this point but I’m really scared it could be. I’m wondering two things really if anyone else on here who is hypo has had similar things like muscle twitches and weakness happen and two how people cope with another potentially serious diagnosis. I feel super nervous right now and I am just scared that this could be something I don’t think I can handle. I would really appreciate some advice and sorry for the rant!
Hi Taylor, I completely understand your fears. I was diagnosed with Hashimoto’s fist and then a year later (February 2018) with T1D. I was in shock to be diagnosed at age 41 and was told by the doctor that autoimmune diseases potentially lead to other autoimmune diseases. That explained the T1D since there was no family history. Then while questioning why I was always so cold they diagnosed me with Raynaud’s. They ran a bunch of tests to make sure there were no other autoimmune diseases lurking. I was luck the answer was no but they intend to keep an eye on it and test me yearly. If it would make you feel better I would suggest talking to a neurologist or getting a second opinion to ease your mind.
Hi Taylor, I also have a thyroid problem, and if you are unaware thyroid problems can cause a lot of symptomology, it’s like the computer in your car. Take your Meds and go on with life, I ended up with several autoimmune problems, RA, Liver, GI. You can’t change what you have inherited but you can change the way you look at it, you just go on. PS: I am in my 65 year with this disease and I don’t plan to quit any time soon. Have a great day. Bye Jan
Thanks Janice. So even though I already started the thyroid meds (just about six weeks in) it’s possible to still have symptoms? I’ve been told by a couple of people that in the beginning the meds may need to be fine tuned/adjusted. Also thank you for sharing. You’re right about the way of thinking, it’s just super hard sometimes to be so prone to autoimmune diseases.
Your doc. will monitor your thyroid levels and should adjust accordingly. I have been on thyroid meds for years, and it has helped especially for fatigue, skin problems it just takes time for your body to get up to speed after all you have been lacking in this therapy for a while, give it time and don’t worry about the things you can’t change. I inherited Biliary Cirrhosis and Rheumatoid arth. Oh well, not stopping me. Not sure the person I inherited it from even knew they were sick. I have been type one for 64-65 years and these other things are just there, meds keep it under control. Don’t give yourself more problems by worrying, it doesn’t solve a thing. Bye Jan ENJOY YOUR LIFE!!!
Ask your Endo next time you go in if she could test you for other auto immune disorders.
My last visit, it was suggested due to some other symptoms I have.
I also have hypothyroidism. Have been for many years already. It’s quite common nowadays. Iodine is often a deficiency with hypothyroidism. Check if your salt has added iodine or your vitamins. Also sushi ( algue is usually a good source)
The doctor will start you on a small dose of medication, see how your thyroid levels are, and adjust ( increase) very slowly until you are at the right level. So yes, it does take time.
As for cramps, it could be as simple as a mineral imbalance, which happens when your sugar is too high. As your body flushes out the high sugar, minerals and electrolytes flush out as well. Calcium/magnesium/ potassium imbalances often cause legs cramps.
So obviously, get checked out by the doctors but these are little things that often get overlooked.
Also, right now, you are filled with anxiety with the unknown and your belief is that you wouldn’t be able to deal with another diagnosis. However, keep in mind that if you had been told about t1d, and all it involves, you probably would have said the same thing about diabetes, yet here you are managing it.
Remind yourself, “whatever happens, I can deal with it”
You are young, you are strong. You can have a beautiful life ahead of you
@Tee25 hi Taylor, others have said plenty so I’ll just leave you with what keeps me going at 53 (tomorrow) and 40 years with T1.
I know people who were in perfect health and then got hit by a cement truck: moral; no one gets out of life alive and you’ll never know how it ends till it ends. Adjustment: live like this is your last day on earth, but learn like you will live forever.
Thyroid is not a different autoimmune problem, it’s the same autoimmune problem. That’s why almost all of us have hypothyroid. Lost mine 18 years ago… lesson: 1 tiny pill a day is a cake walk (pardon the diabetic pun) next to the whole insulin thing.
A person who fears suffering is already suffering from what they fear. Anxiety and dread about tomorrow never ever produced a single beneficial thing, it’s just a misery engine. Along the same lines… I don’t have a time machine (yet) so I cant change what happened last year, yesterday, or the last moment. I have to learn from yesterday, and let go of tomorrow. I only got NOW, and so that’s where the focus should stay.
I always though I knew where life would take me… holy cow was I wrong, and I am very grateful I was wrong because, even with the joy, and the tears, this was worth it. I can’t tell you how this will all end, but I can tell you where it will begin. You are the hero of this book you are writing, so make it a book worth reading.
in my opinion it wasn’t really a rant… and thank you for posting it you made me remember what I wanted to do today!
As I sit here typing this my calves are twitching away. I have been T1D for only about a 1.5 years, diagnosed at 42, and on my last round of lab work I showed to have antibodies in my thyroid so I know that diagnosis is coming some day. I first noticed the twitching, or as Doctors refer to them fasciculations, about 4 months ago as well. At first didn’t think anything of it. After some time went by I noticed the fasciculations were still there and this couldnt be right so here comes the worry and negative thoughts. After a good ole fashion panic attack I went to my primary doc and he kind of blew it off as being benign fasiculations or possibly a calcium or magnesium deficiency so more lab work was run. After the labs came back perfectly normal more fear set in so I was referred to a neurologist who performed a number of upper motor neuron tests which were all fine but still the question of what is causing the twitching remained so on to Neurologist #2 for a Nerve conduction study and EMG. NCS showed a very mild neuropathy in my feet and the EMG showed a bulging L5 in my lower lumbar which is probably pressing against a nerve disrupting it and causing the twitches.
Bottom line is I know exactly what you are going through right now but just remember that there are 100 different things that could cause muscle twitches, anxiety could be tops on the list of causes. There is also a big difference between perceived weakness and clinical weakness.
Joe could not have summed this up any better for you and even me for that matter. Try to not plant that seed of fear in your head because it will grow and nothing good will come of it. I know because I did it. Try and stay strong Taylor.
Thank you Richard. I’m sorry you’re going through this too it’s no fun but it makes me feel better that all of your reasons have come back benign. I do have a follow up with my endo on Tuesday to see how the thyroid meds are working and I’m going to bring it up to them too since my primary doesn’t seem that concerned about it. I think seeing a neurologist is probably a good idea to at least put some fears to rest or treat something if something is wrong.
Thank you! I really needed this today. I did get my minerals checked out over the summer but some were borderline low but not clinically low. I’m going to ask my endo when I see him on Tuesday to retest those.
Thank you joe. This helped me a lot to and you’re right everyone has their own struggles.
Hello Taylor. You are in good company as someone coping with both T1D and another auto-immune disorder. At least one recent study showed that the risk of developing additional auto-immune disorders increases if you get T1D as an adult.
I was diagnosed with T1D at age 20, my older sister got it at age 12, a nephew at 5 and a cousin as a teen. I also developed Raynaud’s in my 30s, and hyperthyroidism, or Grave’s Disease, in my 40’s. After a year of treatment with an anti-thyroid drug called propylthiouracil, I have normal thyroid function, but my endocrinologist tells me I will definitely have low thyroid function in the future. I have also been tested for rheumatoid arthritis because my father had it.
It is tough to live with type one diabetes, not to mention another autoimmune disorder, so give yourself credit, pat yourself on the back simply for doing what you can every day to stay as healthy as possible. Give yourself permission to say, “This sucks!” I find that writing about my health really helps me gain perspective. I wish you all the best.
I’m sorrry about your recent diagnosis. I was diagnosed with hypothyroidism as a child, a few years after I became diabetic. Someone told me around then that the more autoimmune diseases you have, the more of them you’re likely to develop. I don’t know why someone would think that’s a smart thing to tell a child. 6 years ago I got a call from my doctor that my bloodwork was positive for celiac disease and my first thought was “Oh God, what’s #4 going to be?” So I understand your fear. But the others are right. You can’t live like that because it’s all random chance. Almost everyone on my father’s side of the family has an autoimmune disease, but I’m the only one of us who has more than one. I was unlucky and there’s nothing I can do about it except try to live my life as well and as fully as possible for as long as possible.
The only bit of advice I can give that I haven’t seen in the other comments is to try cutting back on gluten. When I developed celiac disease my gastroenterologist told me studies have shown that those on gluten free diets are less likely to develop autoimmune diseases than those who consume gluten regularly. It’s a big lifestyle change and, honestly, I don’t think I ever would have considered becoming gluten free if I hadn’t been diagnosed, but maybe try it out. It’s not a guarantee, but if you don’t mind the diet and it gives you a little more peace of mind, what’s the harm?
Hey Taylor…I was diagnosed a type 1 diabetic at age 40. I too had muscle twitching ( mostly lower legs) I went to a neurologist and after only some nerve conducting tests and no blood work he told me that I had ALS … what a quack! I went to UAB for second opinion and after a thorough and when I can only describe as a torture chamber event with all the nerve conduction tests they do I was diagnosed with a multifocal demyelinating neuropathy. Similar to MS and ALS but not as severe as either… … My only advise to you would be try (I understand it’s almost impossible not to worry) to deal with what you have been delt… which is your Type 1 disease . It’s overwhelming enough without stressing out on something that may or may not happen. Stress as you no isn’t good for your health either. We as Type 1’s are in a difficult situation as we don’t know what’s coming down the road … Since you’ve stated all these years you’ve had a “super optimistic outlook” I would highly recommend you go return to that outlook. That’s the best for your health. You are obviously strong enough to have such an outlook with all you have been dealt. So Taylor return to your superwoman type attitude of having your super optimistic outlook. All the Worry in the world can’t move a grain of salt. But your attitude can move mountains.
Thank you so much everyone. I’m feeling a lot less anxious this week and really want to thank you all for your kind words and support. I feel back to being more optimistic and will take it day by day with the other stuff I got going on