Lupus and hypothyroidism.

[johare]

I have had lupus for at least ten years and hypothyroid symptoms for at least three years although the blood tests have only just shown abnormal. I think there is specific link to the two conditions and the thyroid is a gland that is attacked. Like many others I take a combination of meds for the problems caused by lupus and now thyroxine. It is difficult to balance them all. It is difficult to reduce weight with fatigue but slow, steady, with senable diet is the only way to go.

[Nickymck]

Hi Johare. I have had hypothyroid for over 30 years and SLE for 12 years or so. There is a connection but not necessarily lupus causing thyroid though there is a correlation. Also I was told to look out for Diabetes once I reached 50 as the 3 Are in a triangle. Thyroxine, once you get the right dose will stabilise the condition but not your weight. It is like climbing a mountain with a rucksack filled with ricks on your back. It is possible but yes very slow. Sorry this sounds like doom and gloom. My tbyroid doesn't bother me its the lupus that effects my life. Good luck with it all. Take care. X

[Footygirl in reply to Nickymck]

Hi johare

I am just popping in to say that my weight loss is being helped by green tea. If you can find a local tea blender you can have the tea flavoured with various other teas to give a more pleasant fragrance and taste if straight green tea is not to your taste. You have to follow the simple brewing instructions but the tea has no calories and is refreshing to drink all day.

I hope this gives an option

Regards

⚽️

[johare in reply to Footygirl]

Thank you footygirl

[johare in reply to Nickymck]

Thank you, no I don't think doom and gloom it is what it is. Since on the thyroid tablets many things have picked up, as my gp was obsessed with it all being aneamia related. I couldnt take any more iron if I tried. Yes you're right my blood sugar does dip and urine tests have shown glucose but not consistently. Oh joy. Thank you for the heads up.x

[milkwoman in reply to johare]

I have lupus, Sjogrens and also hypothyroidism. All diagnosed 1 year ago. Being tested now for APS. On Plaquenil and levothyroxine.

You mention iron.... I have been struggling with low ferritin. Have tried many different iron supplements and thought I had found a combo that was working but recent testing showed a dramatic drop in ferritin. My level is only 27 now (down from 47 three months ago and I've been supplementing!)

How have you been able to improve your levels?

Despite fatigue and other symptoms, I try to exercise 3-5 days per week. Sometimes I can, other times all I can do is rest. I've worked very hard to get fit (before getting sick) and I'm very fearful that my conditions will undo all that hard work. Currently, fatigue and headaches are most annoying symptoms along with dry, irritated eyes that are highly sun sensitive.

[johare in reply to milkwoman]

Hi, Low ferritin but with a generally good Hb has been a problem all the way through, which is why the thyroid was missed. I take ferritin supplements, which I change the daily dose according to my bowels as I have IBS and get very constipated. I have dropped to 10 in the past. It was actually picked up by my neurologist due to achy leg syndrome. I think we manage to keep enough for daily use but as ferritin is the protein for iron storage we find it difficult to maintain it. Drs it appears, do not have an answer. I have found that green leafy iron seems to be better than red meat iron. But be careful, as this could just be due to my own absorption problems, so tread carefully.

As for symptoms I began just like you with those symptoms. The poor concentration coming along too. My advice in hindsight, balance everything, get adequate amounts of rest, play, good and bad food. You cant live your life like a hermit as that isn't a life, just be mindful of the consequence as we are all different. good luck.

[milkwoman in reply to johare]

My Hb is okay - always in range but generally below 13.6 g/dL or lower (range is 12 - 16). What ferritin supplements do you take? I've tried many and the only ones that showed any improvement were Ferrex-150 and Ferritin Bioavilable Iron (5mg). These do not cause me issues BUT I do need to be careful with constipation as I've developed a small hemorrhoid (so far, not really bothersome - I'm just aware of it). I also feel I have absorption issues, not just with iron/ferritin, but with Vit B12 and folate as well. I currently take bioavailable forms of these which help.

Before I got sick, I was able to log 40 - 50 miles per week on my elliptical trainer along with (4) core workouts and (6) weight training sessions; now, I am lucky if I can manage 20 miles per week with a few core workouts and weight training sessions. The elliptical keeps my joints loose, which is good. (It also keeps me sane! ) My stamina just isn't there anymore and I feel it is because of the low ferritin.

Doctors don't seem concerned but now that I'm certain an APS (Hughes Syndrome) diagnosis is coming, I'm already prepared to ask to be sent to an APS specialist that I've found in my area that has excellent patient reviews. She is a hematologist and an oncologist and my hope is that she will listen to me and take my blood concerns seriously. (My current hematologist thinks I am "fine"). I feel I need some good blood tests done so that I can understand what is happening to me.

Generally, I do eat well (lots of veggies and fruits, good proteins, very little packaged foods, etc). I'm not on any fancy "diet" nor do I restrict myself. Alcohol is troublesome and I've found that eating sugary foods after 7:00 pm or so is not good. Sun is a big no-no and usually leaves me very fatigued. I'm trying to balance things but life typically gets in the way. I used to be such a go-go-go person but now, trying to do what I used to be able to do leaves me completely drained and recovery is any where from a few days to a week.

I agree whole-heartedly with your philosophy! I surround myself with positive people, try to limit stress and do what I can to stay healthy. I'm probably too hard on myself as, I keep thinking of the "old me" and wish for that person back. It is just so unfair when you do all the things you're supposed to do and then end up with your own body failing you. I'm just a few years younger than you and also dealing with peri-menopause. Some days, it is just too much. Thankfully, I have a wonderful support system at home. I'm also grateful for this site since I have learned SO MUCH and have been able to arm myself with the right information so that I can take control of my health when doctors fail. (If it wasnt' for HU, I would never have checked my blood test results and inquired about the APS antibodies that were "high" that no one told me about).

I wish you a wonderful day and a restful night!

[johare in reply to milkwoman]

I can relate to all of your symptoms above. At the moment ferrous fumarate seem to work and then I will need to change again.

I don't look at the old me any more as it leaves me frustrated. I was a nurse of 30 years a mother of four. As a youngest a dancer, gymnast and swimmer. I had to stop work as my cognitive ability is poor, and well you know what exercise is like. Swimming is best but breathlessness is frustrating. Lupus has ruined my heart, which adds to the poor oxygen uptake.

I now enjoy gardening in the shade, crafts, and have bought a dog. Adapting is best. Enjoy the rest of your week and let me know how your results go.

[milkwoman in reply to johare]

Sigh. I still struggle with "adapting". Just not in my nature. So sorry you've had it so rough. I'm not sure what lies ahead for me. I'm tired of being tired.

I got my APS test results back today but not have yet spoken with my rheumy. Looks like I am positive for APS so I've requested a referral to an APS specialist (who is a hematologist/oncologist that comes highly rated). My hope is that the specialist will be able to educate me on APS as well as give me some insight as to what is going on with my blood. My current heme/onc is useless!

[johare in reply to milkwoman]

Not moaning, it is what it is. I suppose its a bit like Cf on its own, more control freaks like me get it than laid back people. Something to be said for being a hippy. If its any help I don't where you live but I paid a one off to go to the London bridge hospital London. Prof Hughes is/was there I saw his associate Dr D Cruz. He was excellent. Just enough to reasure me that all the doctors I were seeing were heading the same way. Everyone I saw was in the same building. Then I saw them on the NHS. X

[milkwoman in reply to johare]

I'm in the states. Calling today to get appt with APS specialist.

[tennissenior]

Dear Jo,

As you probably know by now, Lupus carries many "ugly faces" with it. Years before I was diagnosed with SLE, I was diagnosed with hypothyroidism, and started on Synthroid. About 4 years later, the news came - SLE. If you are having difficulty with your weight, being bloated, losing hair, feeling more fatigued than usual, it's usually caused by a high TSH. Are you on Synthroid? When my Hypo started, my weight was going up 2 pounds a week. My stomach was all bloated and my hair was falling out just by bending over the sink to brush my teeth. I am now, years later, on 125 mcg of Synthroid (formulary). Doctors normally start you on 25 mcgs. My weight is low now because of the SLE and so many other diseases that eventually "accompanied" it. Hypothyroid is indeed, considered an autoimmune disease. I don't know your age, but I was diagnosed at age 67 with SLE. I am now 71. At the onset, the only sign I had were abnormal labs. What else are you experiencing now, and how are your labs??

[johare in reply to tennissenior]

Hi, yes all of the above sounds like me. I went through rapid weight loss two years ago when I started on meds for migraine and epilepsy, then probably due to menopause and thyroid problems went up two stone. its early days for the thyroid meds Levothyroid. I'm 52 but the doc says I've probably had Lupus since my early 20s given my history and misdiagnosed with RA. Most of my symptoms tiredness, cold, headaches, pain in joints, muscles etc are usual, but I suppose that's the problem these things become usual so we don't think there's something new to be done as the symptoms are so general. Balancing the taking of the meds is most difficult do to poor interaction. THANKYOU for replying.

[Alison-Brown]

Hi Jo, I know what you mean with regard to weight gain. I've put on two stone in six months. Deep joy lol

[Hidden]

Hi Jo. I missed this post earlier somehow. I was diagnosed with hypothyroidism ten years ago but think I've had it for far longer. I have struggled with my weight for decades and hair loss, skin problems, rhinitis and other allergies and now dry eyes etc all through my life. I am also 52 and post menopausal. I was put on various doses of Levothyroxine but it seemed to make little difference to me.

Then five years ago my RA symptoms started and four years ago I was diagnosed and put on various drugs such as methotrexate, Sulfa (terrible allergic reaction), Hydroxichloraquine and briefly earlier this year, Azathioprine. I've been on no DMARDs now for about 18 months, have just tapered off Prednisolone after six months and have gained a stone in that time. I'm a bit slothful just now as just so tired and bloated but I lost four stone when the RA symptoms first arrived. I dropped gluten then and avoid refined sugars and eat like a paragon of virtue! I'm trying to get rediagnosed with lupus but three rheumies have so far refused to do this and stick to the original RA diagnosis even though my main problems are achy legs, severe parasthesia and intermittent dizziness, fatigue and gastritis/ reflux plus the obligatory dry eyes.

The reason they say I can't have lupus is because my ANA is equivocal, I have currently no butterfly rashes, I'm post menopausal and apparently if lupus, I would have had organ involvement by now. I do have a large irregular cyst on my kidney and mild Athlerosclerosis plus GERD, balance issues and arrhythmia so I fret that they ignore these things at my peril.

Also my circulation is up the spout so I either freeze or overheat - mainly freeze - but rarely anything in between.

They won't let me try any more immunesuppresants unless my synovial joint pain and swelling recur, so I'm not on any medications now apart from Levothyroxine 100mcg and Ramipril for my borderline hypertension. My new rheum has retested my autoantibodies and my Lupus Anticoagulant - looking for APS. I've not heard back from him yet and it's been 9 weeks now so I'm assuming that nothing has shown up. I will just have to focus on my new life (we moved from our island home of 26 years to the Scottish mainland recently) and give hippy qualities free rein! Twitchy x

[johare]

It would appear that so many of my these symptoms overlap anyway and the diagnosis name only matters to the doctors. To us it remains unchanged. It was the same when I would battle for a diagnosis for a child in school for autism for example. It made little difference accept to the support or funding or for the parent to be listened to. I think that's all we want.

[Hidden]

Yes I recall reading Tony Atwood's pioneering book on Aspergers (also closely linked with leaky gut so I've read) in which he says that the main point of a label is the support it helps to access. In itself it's failrly pointless - apart from understanding the way it affects the child or person in question.

I learned today that my new rheumy hasn't yet written his letter about me and is away on annual leave until a week today so no chance of getting his opinion for a few more weeks. This will make it nearly 3 months since I saw him. Strangely I feel relieved by this because I've just stopped Prednisolone yesterday and feel generally so excited by the new life we've just started that I think I'd rather not have to feel dismissed or have my symptoms disparaged at this stage (or any stage!) of my life. So I feel almost cheered that I'm still officially suffering from mild RA with secondary Sjogrens and Raynauds - these are quite enough to try and self manage without medication.

I'm also wise enough now to know that he's unlikely to risk rediagnosing me with lupus when two of his Scottish colleagues have said this is extremely unlikely. As long as he doesn't try saying it's all fibro or make me feel like a charlatan I will continue to deal with my symptoms through positivity. Tx