Underactive Thyroid and Lupus?

Hi everyone,

I just wanted to see if anyone has had any experience with an underactive Thyroid?

I have been living with Lupus for 8 years now and lately I have been feeling exhausted, my brain just seems to be in a haze, my muscles ache and cramp I've put on weight and I just feel tired and fed up.

At first I was thinking these were usually pre-flare symptoms however I've been to see my doctor and my bloods came back fine with no sign of a flare.

After doing some research I realized that most of my symptoms are the same to those of an underactive thyroid (hypothyroidism) and apparently this is common with people with SLE.

I'm arranging to have my Hormones tested to see what's going on with me however I just wanted to see if anybody here has had the same experience?

I'm only 29 and already on about 7 different types of medication I really hope this is not the case.

Thanks x

10 Replies

  • Hi Jasmine...I have low end lupus and slightly Hypothyroid. I have to fight the weight gain by exercising like a nut, and then I am worn out from the lupus and my body shutting down. Its a constant battle, but beatable. I ride my bike or walk at least 5-6 days a week for an hour. I was told by a gym instructor that thyroid problems take twice as long to loose the weight as a normal person, but it can be done. When I was your age, I could loose it in a couple of months. But, now that I am nearly 51, still active, I would say it took me about a year to loose the weight and come down. I have seen it stay off too, as I watch that I eat anti inflammatory meals as much as I can, and continue to bike ride. I keep going even though I am aching when I get off my bike. My body recovers eventually and I am ok. In the long run, I believe it is better to exercise than not at all. I am not on any medications for the thyroid as I believe sometimes my thyroid is ok. So, medicine is not an option for me, as I would be taking more than I need because I believe it fluctuates. I just deal... Good luck, and don't get discouraged. See how hypo you are first, and judge by that. My sister takes thyroid medication. I choose not to.

  • Hi Natura,

    thanks for the reply- I am definitely hoping its not the Thyroid.

    My problem is getting motivated for the gym and the exercise, I have a full time job and most days I don't come home till after 6 pm and by then I am so tired that all I want to do is have my dinner and go to bed.

    I am at the stage where I'm probably over 1 stone over the weight I feel comfortable at and its definitely impacting how I feel and also my confidence.

    do you have any advice or motivational tips for exercise?

    thanks x

  • yasmine.... Hard when you work such long hours. My best advice would be to get up before work and exercise. Not easy. My crazy brother gets up at 4 am to exercise. He is 62 and in good physical health. I couldn't get up that early, but when I was working at 10 am, I could exercise before that. Definitely too tired to exercise after work. When I was 23, I worked out from 8-10 pm in the gym. I don't know how I got there. My best exercise is bike riding. I rode in my garage in the winter, and now back on the streets. I also walk with a friend to motivate me. Always worked out alone when I was younger. Now, I need help. My friend talks, I listen, and the walk is over before you know it. Mix it up. Don't do the same thing everyday. It gets boring fast. I use to do weights when I was younger, but cannot lift anymore. Muscles are extremely weak, but I have gotten stronger with bike riding and my leg muscles are a lot better. Try to come up with a plan. And always leave yourself a day or two to not exercise, but rest. And you're not allowed to feel guilty about taking time off. Very hard with lupus. I am having problems with over exercise now and doing too much. I am flaring a little today because I did too much this weekend. Listen to your body. Sometimes push through it. Good luck, and let my know how you are doing. Just get started with anything. Even yoga, dancing to music...

  • Yes I have lupus and an under active thyroid

  • Hi Yasmine

    I have both lupus and underactive thyroid. I was actually told by my specialist when diagnosed with hypothyroid that it was the Lupus that had affected the gland. I am not sure if this is always the case.

    I find it extremely hard to lose weight and even though I have reduced portion size and attempt to exercise is doesn't seem to move in the right direction.

    When I was working I would arrive home totally exhausted and would not be able to exercise. I often fell asleep before cooking a meal which meant I ate late too.

    I am much older than you, however it was about the same age they diagnosed my thyroid issues.

    All the best, let's hope they discover what it is.

  • hi willow,

    thanks for the reply yes I've read that about Lupus affecting the gland and that's exactly what I'm worried about.

    I think I need to summon all my strength, willpower and energy to get moving I hope once I'm in the routine it wont be as difficult :)

    wishing you all the best x

  • I was diagnosed with a very underactive thyroid in 1993 and with Lupus in 2010. Like you I have a number of meds I have to take each day. It also means that I am tired and overweight, and as Natura said, it's really hard to lose weight with an underactive thyroid even when you're on the correct medication, no matter what other people might tell you. Add to that the exhaustion that comes from both the hypothyroidism and the Lupus and it's not a lot of fun! So I hope for your sake that you don't turn out to have an underactive thyroid, but if you have, just take the thyroxine and you will find you start to feel a bit better. x

  • hi yasmine,

    i have had an under active thyroid for 5 years and have been upping my medication every year to keep up with my levels. i also have lupus and the two conditions together can be difficult. however, i have found a few things have helped me and may help you too, i hope. taking hydroxy and thyroid replacement really help and taking them regularly and not forgetting them is a must. once hydroxy kicks in (for me it took 4 months) i felt almost normal and it really helped me feel 'normal' and less depressed. i also find that being active helps as well as sleeping as much as possible. sadly, alcohol doesn't help these conditions, neither does poor diet and stress. keep busy, active and happy and hopefully the healthy will come along too.

  • Ive just had bloods done today for thyroid issues. Ive been tested loads of times before but always normal even though i have all the symptoms. Gp wants to retest because ive developed hoarseness and this is a symptom of thyroid probs. I'm also a stone over weight, pre diagnosis i lost loads of weight then when i was diagnosed & started all the meds and steroid infusions and the weight piled on! It gets me so down I've no confidence. I have tried to diet by the book weight watchers, slimming world etc and still cant lose weight? I often wonder is it hydroxy that causes weight gain too? Your definitely not alone with this i just wish i could drop even a few pound for summer :(

  • Hi I have Hypothyroidism (the autoimmune type) and RA but am being given a second opinion on the RA on Monday. I've been Hypothyroid for about ten years - started on a low dose of Levothyroxine and worked my way up. By the time the RA was diagnosed I'd been severely overweight (obese) for a long time. Now I've lost four stone but struggle with the rest despite keeping active as much as possible. Looking back I think I might have had some kind of sero-negative Lupus type of thing going on for much longer than the joint pain/ RA symptoms have been around for. As a kid I had severe eczema and bouts of alopecia and often had a butterfly rash across my face. So whether the Hypothyroidism came first or whether it was secondary to some much longer term autoimmune condition I don't know. I have always had low amounts of energy but I force myself to walk a few miles each day at least and try and exercise daily for 30 minutes. But I am self employed so can suit myself about time. I try to do yoga on my nintendo Wii Fit Plus everyday and attend a weekly zumba class when I'm not feeling too bad. I also go to an older person's popmobility class where I'm the youngest (at 51) who attends which is fun!

    I think the idea is "use it or lose it" and I did make a decision to cut out wheat and most dairy and all refined sugar when I was diagnosed with RA to help the load bearing joints. It also helps my self esteem to lose weight although I do seem to struggle even when my appetite is virtually non-existent as it is just now. I keep hoping that my symptoms relate to the thyroid disease rather than other things because somehow this feels like a less scary condition and the meds are relatively benign compared to the DMARDs I take at present. But my GPs are adamant that I'm on the right dose of Levothyroxine for me and I try to believe them. If you join the Thyroid UK HealthUnlocked community you can post your results on there when you get them and people will explain what they mean for you. Twitchy

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