Anyone have thyroid issues?: Anyone diagnosed with... - LUPUS UK

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Anyone have thyroid issues?

Michellear
Michellear

Anyone diagnosed with Lupus also have thyroid problems? After a recent ongoing visit to A and E due to heart rate 180 and above for 12 hours, advised I have hyperthyroidism. Bloods showed positive for antibodies etc?

73 Replies

Yes I have hashimoto's thyroiditis which is autoimmune thyroid illness in which the body attacks your thyroid gland. I also have b12 deficiency anaemia which goes hand in hand with it.if you have 1 AI illness there is a good chance you will have more than 1 ...I have 4 🙄 as I also sjorgens which is secondary to my lupus.i cant take thyroxine so my hashimoto's is controlled by thyroid extract.are they referring you to endocrinology ?

Thyroid problems like Wetzel's are common in people with lupus. According to statistics from the Johns Hopkins Lupus Center, about 6 percent of people with lupus have hypothyroidism and 2 percent have overactive thyroid, or hyperthyroidism.

lupus.org › resources › thyroi...

Thyroid therapy and lupus

Xxx

Thank you for the link! Having a read now x

👍 xx

That's really interesting. I was diagnosed with hypothyroidism a couple of weeks ago I find it really confusing knowing what is caused by that or lupus. And I was wondering if it was common in lupus sufferers.

Michellear
Michellear in reply to Joni2011

Seems like it is judging by all the replies!!

Hi Spanielmadlady

I also take thyroxine , for hashimotos , I find this information you write about very interesting 🌟🦋❤️

Pleased it has been informative Willow There is a hereditary element to hashimoto's my mum also has it x😘x

Yes my mum did too 🦋❤️

Very interesting spanielmadlady I’ve been looking at hyperthyroidism. I’ve been looking at paying to have my thyroid tested as I see it mentioned on the thyroid hub and quite affordable 👍xx

Shame you have to pay for it but if it gives you some peace of mind then its maybe worth it xx

Well I don’t want to, I’d rather nhs do it, but gp problems leave me thinking it will be worth it for answers or peace of mind and piece of puzzle 🤷‍♀️Been busy with school stuff and helping daughter with choosing her options but hope to get back to my journey 👍xx

Michellear
Michellear in reply to stiff19

Have you asked the doctor to carry out some bloods? I assume hypo is diagnosed same was a hyper?

stiff19
stiff19 in reply to Michellear

No, I had them checked about 6 years ago, they only do standard tests and told I was in menopause(I didn’t think bloods could tell that) . I don’t know enough to know what is checked but I thought if I had thyroid checked they might pick up on something if there. 🤷‍♀️

Michellear
Michellear in reply to stiff19

Sorry to hear that. GPS have a habit of blaming everything on the menopause!

stiff19
stiff19 in reply to Michellear

Yes I think being unwell once a certain age and it’s the go to, but just trying to help myself 🤞

Progesterone levels are picked up in routine bloods as is thyroid function when requested. my thyroid was first picked up by gp .the hospital do mine now as I'm on an unlicensed thyroid drug which is consultant prescribed only .thyroid bloods used to take weeks to come back but it only takes 24 hrs or so now.i assume the paid ones are more indepth.i have patient access to my blood results so I can see for myself exactly what has been done and what the results are x

That’s great I’m glad you get to see yours I’ve only ever seen mine once.I will keep looking through the tests they do as they seem to test different things 🤷‍♀️ My memory is poo 💩 so I have to reread all the time🙈

I think everyone should be given a copy of their blood tests when have them even at cost of the paper.

Hope you have a good weekend 🤗xx

I have access to my gp medical records online so I can see everything .the bloods I had done yesterday are on there now I've seen them and know my white cell count is out .I also know theyve not done renal function or diabetes screen 😡 oh well they will have to wait until next month now.Happy crafting xxxx

I have this set up when I went to facial at different hospital but our local doesn’t do this. 😡 but good you can see and know 👍 enjoy the weekend, lovely day here today 👍🌞xx

Same here SML. Subacute thyroiditis at initial diagnosis. Thyroid is still normal but TSH is climbing. I suspect I’ll become hypothyroid over time.

KayHimm
KayHimm in reply to Jmiller623

You are the first person I have ever known who also has that diagnosis. That was an endocrinologist who I went to see as internist for second opinion diagnosed me as having. I think it was helpful in getting my original doctor to think “maybe collagen vascular disease” and got me to a rheumatologist. Didn’t understand anything at the time.

I have have gone high and low, I think, over the years. The endocrinologist gets ultrasound yearly because of nodules.

Do you think this is all autoimmune?

How are you feeling? IVIG still working?

😍 k

Hi Louise,

Thank you for your message. Sounds like most people are very unlucky and prone to more than one autoimmune issue.

Many thanks for your message and have a good day.

Michelle xxx

Hi yes lupus diagnosed 10 years ago then tachycardia 2 years ago and now autoimmune hypothyroidism 1 year ago looks like there is a connection and now low zinc and vitamin D..... aren’t we lucky the stuff we all have to put up with 🙄.

Take care hope you get sorted soon x

Michellear
Michellear in reply to Hugs1

Hi Hugs, thank you for your message. Finally have a cause and started meds. Had racing heart for last 8 weeks 180 bpm for up to 12 hours every day. My resting heart has been 100bpm. So glad finally have answers and hopefully correct medication xx

It's quite complicated. I cant take synthetic thyroxine which contains t4 only .it doesnt stabilise my bloods. T4 is the storage hormone and you need t3 in order to use it .if you dont make enough t3 you just store the t4 and cant metabolize it.thyroid extract contains all 4 thyroid hormones and is the thyroid gland from pigs. It is a consultant only prescribed drug now as it's no longer licensed in the uk even though it was the only drug used before synthetic drugs.its also expensive...synthetic thyroxine cost about 1p a tablet thyroid extract cost about £90 a time as it has to be imported from America .i was diagnosed with hashimoto's about 10 years ago ( before the lupus and lupus nephritis) and I was sent to an endocrinologist when after 9 months my gp couldnt stabilise my bloods and I was getting worse. They dont tell you about thyroid extract but I found out about it through Stop the Thyroid Madness. I also had a brilliant book by Dr Barry Durrant Peatfield a thyroid specialist in london which I went armed with to my local hospital ( I lent it to someone and never got it back 🙄) there is alot they dont tell you btw . Hope that explains for you xxx

Thank you for your message abs all the useful info! Going to Google now. Just back from Endocrinogy they believe I have Graves’ disease causing hyperthyroidism, as apposed to hypothyroidism which seems to be most common in the majority of replies. Cheers Michele 👍

At least you know you are not alone in having thyroid issues with lupus.i hope they are able to help treat it...the more complications we can keep stable the better .best wishes and hugs Michelle xx

Hi Spanielmadlady thank you for your message and wishes! I’m so glad finally got answers and hopefully proper meds. Health and complications are not good for anyone, sadly seems I’m not alone. Sending love and hugs back to you xxx

Thank you keep smiling xx

Levothyroxine is sythethic t4...they dont tell you about the need for T3. You cant convert it without T3.i just got worse.i piled on the weight my concentration was awful I couldnt work anything out and I could barely get out of bed.they added synthetic t3 to my t4 nd it was great I lost the weight etc but it has a very short half life in the body only 8 hrs so once youd taken the days tablets it was like the meter had run out .I had to take it to get out of bed then again at dinnertime and by teatime I was finished. That proved I needed t3 so was put onto armour thyroid extract.As for pigs...its their thyroid gland dried so is a natural product and has all the hormones in a natural balance but I understand it from a vegetarian/vegan point of view.for me it's the only drug that's worked .

I know what you mean about labs and results.the hospital do mine if the drs request it it causes chaos as armour gives slightly different free t3 result

Have a look at the Stop the thyroid madness website its excellent xxx

Hello, yep me too! I was diagnosed with an under active thyroid 13 years ago and then Lupus 10 years ago. I take levothyroxine daily. 👍x

Thanks for the message, this seems very common in Lupus sufferers. Have a good day x

Hi, another one here! Hashimotos diagnosed when I was 22. Lupus 4 years ago. I’m now 44. Was on T4 only for for years. Last 6 been on T4/T3 combo. Been much better. Also take high dose vitamin D. Also have low ferritin and B12. Seems to all be linked. Been gluten free last 3 years and feel better for that. Lx

Michellear
Michellear in reply to Polina44

Thanks for the message Polina, good to hear the supplements and meds have helped 👍

If you have been diagnosed with hyperthyroidism, which is overactive thyroid, then you probably have Graves' antibodies which are causing it. Unlike underactive people, you will be put under the care of an endo immediately. People with one autoimmune condition are more likely than others to go on to develop another, so this is not a surprising scenario. Hopefully the medication you will soon be put on will resolve your issues and put it into remission. I myself am underactive.

Michellear
Michellear in reply to Partner20

Hi Partner, thank you for the message. Apparently I have been having episodes of thyrotoxicosis. Just lucky to see the right doc at A and E whom diagnosed it. Been to A and E 4 times since Jan they told me they weren’t worried about fast heart. This left me reluctant to attend and ride through the fast heart and symptoms. Last A and E doc told me it’s a medical emergency and to call an ambulance if starts again! So far beta blockers managing it but blood pressure dropping too low and also started on thyroid meds. Happy days!! Have a good day xxx

I have had hypothroidism since menopause. I am just finding that it is absolutely connected to my autoimmune disorder. My mother had Hashimoto's, and I don't think that any of my drs heard that when I told them, they are just now recognizing the connection. I am currently being evaluated for lupus, I have chronic leukemia and hypothroidism but they just aren't sure what to treat. More testing.

Hi Pacific sorry to hear what you are fi g through. I hope you get some answers soon xxx

It always confuses me when my TSH goes up. It goes up because your thyroid level is low.

The majority of hypo people have no problems converting T4 to T3, and so levothyroxine, which is a bio-identical T4 hormone replacement is sufficient to regulate their levels. There are genetic markers which point to poor conversion which some people test themselves for if their FT3 doesn't rise even when TSH and FT4 are optimal. Regarding your point about different lab ranges, it is actually the position in the range that your result is, rather than the actual number itself. Check out "The Invisible Hypothyroidism", whose author, Rachel, also runs a very friendly and informative FB group, "Thyroid family, hypothyroidism advice and support". Regarding iodine, that is definitely contraindicated in the case of Hashimoto's. Levothyroxine contains sufficient iodine for those on this treatment, so any extra could actually be damaging. Iodine is to be treated with caution. However, optimal levels of selenium are needed to aid the T4 to T3 conversion, and magnesium and Vit.D aids the process too. Until vitamins and minerals are optimal, no thyroid treatment will work at its best.

I take Synthroid (150mg) for Hashimoto’s thyroiditis. Been hypothyroid since I was a teenager (47 now). I can’t say it is bothering me, though I could be more careful taking the medication. They say to not eat or drink any dairy within 4 hours of taking it. I take the pill some mornings with some chocolate milk or iced cappuccino on the way to work (made with cream). Lol I need to stop that bad habit.

Hi Willow, sounds like a good habit I love chocolate milkshake lol xxx

I had hyperthyroidism due to Graves' Disease, which showed itself at first through palpitations. I was on meds to control it but that couldn't work long term so they knocked out my thyroid with radioactive iodine and I now have hypothyroidism controlled by Levothyroxine.

Michellear
Michellear in reply to Tykle

Hi Tykle, sounds like you’ve been through it!! Stay strong and thank you for the message xx

Tykle
Tykle in reply to Michellear

It was bad having an overactive thyroid as it felt like I had something in my throat all the time and I had very bad migraines too. The iodine is a simple, non-invasive fix if you have an overactive thyroid as long as you aren't planning a family and can keep away from children for a while whilst you're a bit radioactive! My biggest problem was having to wait almost a year until the summer holidays as I'm a teacher. All you have to do is swallow a pill, then you wait to see how how much of your thyroid has been knocked out. I'm on 150mcg of Levothyroxine now. The good news is that you have free prescriptions if you're on Levothyroxine!

Michellear
Michellear in reply to Tykle

Hi Tykle, thanks for the message and information. Sounds like there’s always a positive “free prescriptions” lol. No kids coming so might be an option in the future. I see an Endocrinologist at A and E yesterday and he sis mention that might be an option of the meds don’t work! X

Tykle
Tykle in reply to Michellear

Good luck with it all.

Hi Michellear - I have been saying for months that I believe I have problem with my thyroid...I now have a brilliant doctor and I recently had another ultrascan on my neck (previous scans did show nodule/goiter/lump) and I got a phone call yesterday to advise that the Endoc consultant wants me to have a biopsy....I have blood work today and a consultation call with him on 11 March. I also have a call with new Rheumy consultant tomorrow - I was diagnosed with AHA last year and have borderline Lupus but my symptoms have got worse - I was off work for 2 months - just came back - I just could not cope and also had a breakdown...apart from you guys on this hub and someone else who I know personally who is really suffering - no-one understands...you go for tests and they come back negative - you go again and they are positive...it is one of the hardest illnesses to diagnose correctly. So many people suffer from Chronic Illness in silence and it is the lack of understanding from others, the roll of the eyes when you describe what you are going through, in these strange times it is even harder as you are afraid to go out - I cannot book my vaccine until I get all the tests out of the way so a waiting game ...someone I know is writing a book and I suggested maybe one title for it should be Do I look OK? Look again...Look up Lupus...;o) anyone got any more suggestions...might be a bit of fun...and god knows we need some of that..I believe we all know our own body and it is so wonderful when someone actually listens...fingers crossed I will get some answers soon...some advice..keep pestering, keep pushing, keep researching and keep these hubs going. xxxx

Michellear
Michellear in reply to Caj64

Hi Caj64, sounds like you’ve been having a rough time. Sending love and hugs your way. I’ve also seen a rheumatologistWho didn’t acknowledge none of my symptoms. Sent me a follow up letter and to be honest he was talking about a different Patient as none of the facts or information in the letter applied to me!! It’s all such a fight and you get told it’s in your head etc. I believe I have lupus Ana 1:80 low iron, low vitamin b and d. Joint pain, fatigue, headaches, discoid eczema, butterfly rash, problems swelling, reoccurring UTI’s the list goes on prob more I’ve forgotten as get brain fog as well lol it’s just a fight trying to get recognition. I just want meds to help me function and work. I complained to Pals about my rhuemy and I’ve asked to see Dr Arvin Kaul. They promised to arrange an appt last Oct but still waiting! Told it’s gonna be a long wait.... good luck stay strong and keep fighting to get the help you need!! Xxx

Caj64
Caj64 in reply to Michellear

Hi again - I had a video call with a new Rheumatologist on Monday who after reviewing my notes from last year, including blood works, has dismissed that I have Lupus and stated that I was too old (64) to get Lupus and that I have Fibromyalgia (which pretty much mirrors Lupus symptoms). I am being sent to a nerve clinic to assess the pins and needles in both hands and pain in wrists and hands and physio for my back, neck and shoulder pain. It has been suggested I go on Duloxetine which is an anti-depressant which should help with the symptoms....I am confused now and also from my Stroke doctor that I go on amatriplyne for my migraine headaches (I did not have a stroke - just the symptoms of having one!) I understand it is so difficult to get a true diagnosis and believe we should have regular blood works but to get that arranged is nigh on impossible. I also had a telephone call regarding an ultrascan on my neck which highlighted a lump on the thyroid (bearing in mind I had 2 ultrascans last year which picked up I had a lump but nothing further was done about it) and was told I now need a biopsy asap - I have this on 19 March - so slightly worried to say the least - I also have my vaccine on 13 March and after reading some of comments regarding reactions to the vaccine I am also worried about that as have had a lot of time off sick. I wake up hoping I will have a better day with no effects but have come to the conclusion I have to live with it...I will be talking to my doctor next week to discuss my options regarding medication - would be lovely to have one pain free week.....🥴

Michellear
Michellear in reply to Caj64

Hi Caj, sounds like you’re really going through it. Sorry to hear about your issues.

Some rheumatologists are so closed minded!! I contacted Paul Howard the administrator from LUPUS UK lupusuk.org.uk

01708 731251 and he gave me a list of recommended rheumatologists within. My NHS health trust. My current rheumatologist has been useless and dismissed all my symptoms, a follow up letter from our phone consultation was incorrect and I believe he was referring to a different patient. As a result I contacted PALS and requested I see Dr Kaul (as recommended by Paul). They have agreed to put me on the waiting list however I am still waiting since my request in October last year.

As for telling you that you are too old to be diagnosed with Lupus that is ridiculous, my mum was diagnosed with Lupus at 61!!

I hope your doctor recommends some helpful meds, I feel your pain :( xxxx

Caj64
Caj64 in reply to Michellear

many thanks Michelle - playing a waiting game like thousands of us....🙏

stiff19
stiff19 in reply to Caj64

Yes I’m still to find the understanding, I think women get a rawer deal from docs anyway, but just seems nature of how nhs is too. I agree with you , keeping my fingers crossed that you get answers too 🤗

Hi Michellear I have hypothyroidism and take 110 micro grams of levothyroxine daily. I really hope you get the correct treatment and start to feel better xxx

Hi Cecil, thanks for your message and enjoy your day xxx

I was diagnosed with hypothyroidism about 10-15 years before Lupus was finally diagnosed.

Michellear
Michellear in reply to Bee_E

Hi Bee, thank you for your message. Stay strong and keep fighting xxx

Bee_E
Bee_E in reply to Michellear

You too xx

Yes, Graves’ disease with all the classic symptoms, I had to have Thyroidectomy 25 years ago since then completely dependent on Levothyroxine. Throughout all these years still never stable for long, up and down like a seesaw drives me crazy. I also have chronic ME and had breast cancer, so what is causing what symptoms is near impossible to tell due to so many crossover ones.

Wow sounds like you’ve had a rough time. Sending love and hugs xxx

Bless you thank you 🥰 I have quite a few others too, but have so much brain fog takes me ages to list them, I always end up laughing at myself because it seems so rediculous a) not being able to instantly recall them and b) I either sound like a hypochondriac or just plain greedy 🤣

Funnily enough my mum calls me greedy when listing all my ailments 🤣

😂😂❤️

Hi MichellearI was diagnosed with Hypothyroid 30 plus years ago but it took a long while to get a diagnosis. Then 15 plus years ago I was diagnosed with SLE. At that point I was told to look out for Diabetes at around age 50. Fortunately, no diabetes and I will be 57 this year .

I was diagnosed with under active thyroid years before my lupus x

I was diagnosed under active thyroid years before I was told I had lupus I think it is quite common to have both, hope you feel better soon .

Hi Daddodill! Thank you for the message, this forum has been very useful. It’s nice to chat with others and share experiences. All this autoimmune is unheard of to the general public! X

I believe that is correct

When all my autoimmune stuff started to snowball around time of lupus diagnosis, I was hyperthyroid. My antibodies for autoimmune thyroid were all negative. With lupus treatment and beta blocker for tachycardia, my labs have turned back to normal. I think it was subacute thyroiditis in the setting of a bad lupus flare. Endocrinology said to trend thyroid labs to make sure I don’t become hypothyroid. Kind of like Hashimotos without antibodies.

If you’re hyperthyroid with antibodies like Graves then there are multiple treatment options - meds, surgery or radioactive iodine. A good endocrinologist can walk you through the most appropriate one if necessary.

There is also a good thyroid community on HU that you might want to try. They can walk you though all specifics.

Sending hugs. ❤️xx

Thank you for your message. I will have a look at the thyroid community! Everyone on here has so much in common! It’s been a great help to read everyone’s messages and few supported. Thank you x

Yes, I’ve an under active thyroid with lupus, lupus nephritis and v b12 deficiency. It common and they will give you levothyroxine for this I guess. Karpov safe 🙂

Hi, i am all new to this so you might have to be patient with me. I was healthy then started getting ill. First a vitamin d deficiancy, fibromyalgia then under active thyroid SLE,COPD,Raynards and osteoporosis and a few more things. One day i might understand it all.

Wow you have a lot going on! I hope the treatment is helping you? X

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