Lupus Diagnosis with Hashimoto's

[Sophie1304]

Hi

I am waiting for an appointment to see a rheumotologist after having borderline lupus blood results. I was diagnosed with hashimoto's 5 years ago, but constantly suffer with fatigue, aches and pains, depression, swollen glands and headaches, no matter if my thyroid bloods come back 'normal'. I have seen an endocrinologist before and they sent me away with depression and nothing else was looked into! I am so scared this is going to happen again, but with a different consultant/specialist.

Has anyone else got hashimoto's and lupus? Did it take ages to get diagnosed?

I am only 23 and struggling with work because of my symptoms. Plus I had to demand and stamp my feet to have my bloods checked for lupus because the doctor blamed my symptoms on anything but another autoimmune disease.

Thank you in advance!

[PMRpro]

Strange - anyone with one autoimmune disorder is at a greater risk of developing another than someone who doesn't already have one. And a doctor should be aware of that. The trouble is, many of them develop preconceptions - and if an endo suggested depression it is a very convenient label to latch onto and use as a get-out.

Good luck.

[Sophie1304 in reply to PMRpro]

Yeah I had read that and looked into peoples' blogs and articles on suffering with multiple autoimmune diseases, which is why I asked to be tested for other ones. I suppose I am taking steps forward now I have been referred to rheumatology.

Thank you.

[griffithnancy in reply to PMRpro]

I AGREE. If it hurts, ck it out. If they don't pay attention. Keep getting them till you find the root of all of it.

[Bronagh2015]

it takes 7 years on average for someone to get a Lupus diagnosis Sophie! However you are doing the right things by stamping your feet and fighting your own corner when necessary. Hopefully the Rheumatologist you see will leave you feeling more positive about things, Lupus UK have some great literature you can download for people awaiting diagnosis etc.

[Sophie1304 in reply to Bronagh2015]

Thank you.

Wow that's a long time, hopefully I'm in the right direction then. I will definitely have a look at Lupus UK and get my head around everything. Thank you.

[Polina44]

Hi,

I have hashimoto's and recently diagnosed with mild SLE (I am 40). I think the thyroid issue got the blame for everything but I was persistent. I think i also have PA but that's another battle I will be having.

Best of luck but it shouldn't be like that should it! 🍀

[Sophie1304 in reply to Polina44]

Hi.

Ah, yeah seems like the thyroid is so easy to blame because the tests and diagnosis are easier. It's such a shame when we know how we feel, for me it's the fatigue that I really struggle with, some days I really can't get out of bed and I don't want to do anything other than sleep and rest. It really bothers me that people see it is as being lazy!

Thank you, it shouldn't be like this but I will definitely fight for answers!

[Lara4228 in reply to Sophie1304]

I feel you girl. I constantly think my family sees me as being lazy, but the truth is...I simply can't get my butt into gear when you feel so drained and lethargic

[Sophie1304 in reply to Lara4228]

Yeah I'm exactly the same and sometimes at work I struggle to motivate myself to get up and do physical work when I just wanna stay sat down or go home to sleep!

[BettieJ]

I sympathise, Sophie.

I have hashimotos and multiple sclerosis; I too, am waiting on a diagnosis of lupus, though I think I will have to change rheumies for one that specialises in lupus, since the one I presently see is singularly unsympathetic and blames EVERYTHING on my thyroid gland (even MS, go figure), so you aren't alone by any means.

Lupus is sometimes described as the disease of a thousand faces, so its easy for medics to pass it anything other than the condition itself. Persistence and patience is the name of the game, so go armed with plenty of questions when you see your doctors, and don't let them put you off with faint excuses; if you aren't happy, ask for a second or even a third opinion. Above all, I would suggest that you try and see a rheumatologist who specialises in Lupus before you even get to the latter stage - which causes no end of frustration- as it seem to me such specialists are at least prepared to consider a diagnosis of lupus rather than dismissing your symptoms so tritely.

Bx

[Sophie1304 in reply to BettieJ]

Thank you Bettie.

I will definitely be persisting and I will ask the hospital to have a lupus specialist before my appoibtment is made

I'm very glad you said that as I thought they may all specialise in it! I'm looking into blogs and on lupus UK more and more each day and reading my blood results so I know what I'm talking about more when I see someone. Thank you again! Hope you are feeling well.

Sophie x

[Mifford]

Hi Sophie - another hashis/lupie here too. Took me ages to get my thyroid recognised as my tsh was "normal" but then I was lucky to find a fantastic endo who couldn't believe my ANA results kept getting ignored and then taught me how to work my GP to get referred to rheumy where I was then diagnosed with lupus.

Two things I would suggest ... Firstly take an A4 sheet with a bullet list of symptoms to hand to the consultant. After being sent to every specialist going over the years (it took 20 years for me!) I noticed they switched off after I'd mention a few things but when I put this on paper with something they could look at quickly it stopped that glazing over. Don't base this on what you've read online though just list things you notice that are different - some of mine fitted lupus but others didn't and you want to get the right diagnosis after all. This also helps you monitor your condition as after 6 months on meds you can update the list for severity etc and see if the treatment is helping.

Secondly get copies of your thyroid results each time. When you say your thyroid is normal that's a huge range that might not be normal for you. My body is very reactive which the endo thought was due to the autoimmune issues - lupus is pretty much all body overreaction right? - and for me we've discovered that my TSH has a very small range of 0.3-0.8 for me to feel well when I was at over 4 and being told it was normal I was feeling extremely ill. It's not in the least bit unusual to need your tsh to be below 1 to feel better.

Hope that helps and best of luck

[Sophie1304 in reply to Mifford]

Thank you for your advice, I will double check what my TSH is and definitely write down my symptoms. Great idea!

[Paul_Howard Partner LUPUS UK]

Hi Sophie1304 ,

Good luck with the rheumatology appointment when you go. I hope that they are able to find some more answers for your symptoms and be able to treat them more effectively. Please keep us updated with how you are getting on.

If you want more information about lupus and how it is diagnosed, we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info...

I'm sorry to hear that you are struggling at work. Are they aware of your hashimoto's and current investigations? Have they made any adjustments to help you manage better in your current role? If you want more information about your rights and support in the workplace, we have a couple of booklets that you can read and download here - lupusuk.org.uk/working-with... (if you need physical copies sent to you, please just send me a private message or email [e-mail] with your name and address).

[Sophie1304 in reply to Paul_Howard]

Thank you Paul. I feel like I will be waiting ages for the appointment, they said to wait up to 2 months!

I will download all the packs, thank you for the information.

Yes, they know about my hashimoto's, but my manager doesn't seem to understand my symptoms because they aren't always visible to him which is such a shame, so I am meeting with HR to explain this to them and hopefully manage it better at work.

[Paul_Howard Partner LUPUS UK in reply to Sophie1304]

I hope that you don't have to wait that long. Sometimes you can get an earlier appointment by regularly phoning the consultant's secretary and checking whether there have been any cancellations - that may be worth trying.

[Sophie1304 in reply to Paul_Howard]

I've been referred from my GP to the Hospital department, I don't know my consultant yet, but I will definitely try ringing their reception up.

Thank you.

[Caramia64]

Hi I have hashimotos , diagnosed many years ago , never really been right since like you still have symptoms though bloods within range, on maximum dose thyroxine. I am currently going through a skin biopsy for lupus and see rheumy in November . Good luck x

[griffithnancy]

My Dr said first. 1- You have hypothroidism. Went on Synthroid. 50 mg daily. Then Endocrinologist diagnosed hyperparathyroidism. My immune system is killing my liver. Last but not least. Your thyroid is your body's main master controller over everything. Now my liver is swollen up with ICH. Immune Compromised Hepatitis. No cure. My advice.... tell Dr all symptoms and especially if your tired all the time...hate a PTH test.