is my levothyroxine causing drug induced lupus?

[horses4me67]

I had a total thyroidectomy in nov started Levothyroxine in dec now I started to have a lot of inflammatory issues.  my hands swelled up at my knuckles so went to my dr and we checked sed rate, crp both elevated so then checked a RAF and CCP both w/in normal  so its not rheumatoid ,  so then checked ANA whice was postive so then they checked for a series of autoimmune dieases my lab came back postive for lupus but also have a postive antihistone antibody  which usually means drug induced lupus  help only new med for me is the thryroid med  and i have to be on something since i have had it removed due to cancer.  so my question is  - is it the thyroid med causing my lupus symptoms?     Has anyone  had this  and what do i do i have to be on something .  They want me to be hyperthyroid.  I am currently on 200 mcg  I do not have any symptoms of being hyperthyroid on this dose.

[JulieRox]

I had a throidectomy in 1994 (I had a cancerous tumour in thyroid), which caused me to become hyperthyroid.  I was started on Levothyroxine to counter my then post-operative hypothyroid condition.  Shortly thereafter I noticed signs of inflammation (swollen knuckles), but that was no big deal, so I ignored it.  As the years progressed, so my dosage of Levothyroxine was increased - I am currently on 175mcg/day.  I have noticed the presentation of several other symptoms (desperate fatigue, the extremely annoying and embarrasing "brain fog", painful joints, IBS, migraine, disturbed sleep, night sweats. photo-sensitive rash, other rashes ... the list goes on).  The situation/symptoms were clouded somewhat 12 years ago when I was diagnosed with an Acoustic Neuroma (type of brain tumour, benign), from which surgery I was very fortunate to make an exceptionally good recovery.  I wrongly-attributed some of my symptoms to the brain tumour.  The years progressed and so did the symptoms.  Last year I presented to my doctor with really quite debilitating pain in my joints (feet, ankles, knees, hips, wrists, back); so bad at times that I felt my joints were going to collapse.  I was tested for arthritis - I have none.  I was sent on my way.  Not content to leave it (something was causing this pain), I began to do some research, specifically, what might mimic the symptoms of rheumatoid arthritis (the pain was symmetrical, i.e., both ankles, both wrists) and lo and behold up popped lupus.  Reading the symptoms was like reading a checklist of my medical life for the past 20+ years.  I collated my evidence, returned to my doctor (ready to do battle) and asked to be tested.  I am positive for the AntiRo Antibody and was referred to a Rheumatologist.  I have been treated with 400mg/day of Hydroxychloroquinine (an anti-malarial drug) for almost 4 months now and it's beginning to make a difference.  I am sleeping better and the pain in my joints has gone,  the "IBS" has calmed down and, overall, I feel much improved.  I have neither SLE nor Discoid Lupus, the specialist said I am "on the lupus spectrum".  I am convinced I have drug-induced lupus courtesy of Levothyroxine, which, of course, I cannot cease taking.  I have my next appointment with the Rheumatologist tomorrow (Thu 7 January 2016) and shall posit my latest theory.  Catch 22, methinks.  If the Quinoric minimizes the symptoms, I shall be delighted.  My only concern is the possibility of it one day "morphing" into SLE.  I know that 5% of those with Discoid Lupus experience this.  My quiet feeling is that the medical fraternity is aware of the correlation between Levothyroxine and Lupus, but don't warn of it.  Good luck to all out there on the Levothyroxine/Lupus rollercoaster.

[gimel]

No, it does not all ****.  What it takes to feel good again is a good thyroid doctor.  A good thyroid doctor will treat a hypo patient clinically by testing and adjusting Free T3 and Free T4 as necessary to relieve symptoms, without being constrained by resultant TSH levels.  You can get some good insight into clinical treatment from this letter written by a good thyroid doctor for patients that he sometimes consults with after initial tests and evaluation.  The letter is then sent to the participating doctor of the patient to help guide treatment.  In the letter, please note the statement, "the ultimate criterion for dose adjustment must always be the clinical response of the patient."


http://hormonerestoration.com/files/ThyroidPMD.pdf

If you will please post your thyroid related test results, along with reference range, perhaps we can provide further insight into your status.   Also, if tested for Vitamin D, B12 and ferritin, please post those, with ranges also.

[Mclark5964]

I to was diagnosed with graves and had my thyroid removed. I am taking armour thyroid which is suppose to be the natural one.  I have been diagnosed with discoid lupus which only affects the skin.  All my ANA tests have always come back normal but I suffer with joint, muscle and bone pain.  I was on methotrexate for the lupus which seemed to help the discoid but caused all my painful symptoms to worsen. I came across this sight hoping that maybe someone was having the same problems on armour and maybe I should switch to levo instead but apparently it all *****.  

[gimel]

T4 and T3 thyroid meds are synthetic only in that they are manufactured outside the body; however they are the same chemical formula.  The predominant ones that are not actually manufactured through chemical processes, would be the NDT types, which are made from desiccated porcine thyroid.

Why are you so concerned about the synthetics?

[nastynose]

I am going to go to the thyroid threads and see if anyone knows of non-synthetic thyroid hormone.

[nastynose]

I have the exact problem. Graves disease then Thyroid removal with radioactive iodine and placed on Levothyroid for treatment 20 years ago. Around 5 years ago I was diagnosed with Pure Red Cell Aplasia. They said it must have been happening over a long period of time. I now seem to have developed Lupus. But if I stop my thyroid Meds my Lupus symptoms go away and return when  I take my medicine. And just like you I will die without my meds. My question is.  Are there any natural thyroid meds as there for other hormone treatment? All I can find are synthetic.

[nastynose]

I have the exact problem. Grave the Thyroid removal with radioactive iodine and placed on Levothyroid for treatment 20 years ago. Around 5 years ago I was diagnosed with Pure Red Cell Aplasia. I now seem to have developed Lupus. But if I stop my thyroid Meds my Lupus symptoms go away and return when  I take my medicine. And just like you I will die without my meds. My question is.  Are there any natural thyroid meds as there for other hormone treatment? All I can find are synthetic.

[jolaavo]

me tooo got diagnosed with underactive thyroid 3 months ago and put straight onto 100 micrograms of levothyroxine . since being on them i have not slept , i can not walk properly and i feel as if someone is constantley hitting me with a hammer , today i tested positive for antinuclear antibodys (ana)  so was wondering if they gonna say i have lupas too but is it caused by levo . i will get answers

[DebbieStraub]

Did you get answers?

[ShareAll]

Do you take meds for BP?  A well known  drug for induced Lupus is Hydralazine.  I overlooked this as no sudden side effects and it seemed to help with my BP for years. BUT all can be fine and the long term use finally goes into Lupus symptoms. Been reading and my dr agreed. No formal testing done on me, but simple deleting it was the test.  I have stopped it for only 1 week now and my energy level has skyrocketed and a lot of my knee pain ( I could hardly walk) has gone away. Waiting for another week as the site for DILE said all symptoms could be gone that quickly( 2 weeks). No guarantees, but sure  betting my health on it.

[Barb135]

It's not unusual for symptoms to worsen or even for new ones to appear, after starting on levo.  They, typically, get better with time, as long as the dosage is adjusted properly.  If symptoms do not go away, either your dosage needs to be changed, or you should try a different med/manufacturer, in case you're reacting to fillers/binders.

[GroverCat]

Hi,

I've experienced the same thing after diagnosis of Hashis-- mind you, no symptoms of hypothyroidism at all (other than being colder than average) at the time of diagnosis-- and within 6 weeks of starting levothyroxine, I started to get joint pain and some swelling off and on in my hands. I'm going to a rheumatologist next month again to have them check for RA factor etc... but I can't help but think it's the only factor that's changed: THE LEVO. It would be awfully coincidental if that wasn't the case.... My TSH etc  are at normal levels now, and the docs seem to think the pill's not connected to my joint pain, but I'm skeptical, and I'm not sure why they are digging in their heels. I'm going to push for a trial of name brand synthroid to see what happens. Several years ago I had a bad reaction to a generic BC pill and my docs wouldn't believe that one either until they allowed me to go back to name brand and "poof"! The symptoms disappeared. "Oh," they said. "Maybe it was the generic."

Worth a try anyway.

[Loulou1902]

I'm in the same situation as you and don't know what to do have u had any luck working this out are u still on levothyroxine

[Loulou1902]

Hi barb I'm in Australia and we only have two kinds of thyroxine and they are both made by the same company with the same ingrediants and I've tried both and they both make me sick , I'm now back on thyroxine and am so sick I can't walk my breathing is very shallow I'm full of inflamation. And my organs are not functioning properly I've only been back on thyroxine for four weeks but in four weeks my health has deteriated so badly but my specialists don't know what to do

[Barb135]

Yes, the levo in the medication is the same as what your body would produce, if it could; however, there are some people who have similar reactions to the fillers/binders in the medication.  Sometimes, simply changing brands or manufacturers makes all the difference in the world.

[Loulou1902]

Hi I had a full thyroid removal for Graves' disease which could not b controlled by medication im now on 200 mg thyroxine and still extremley hypothyroid I have become so sick my weight has doubled yet I never eat my body is so swolen I can't walk my legs and feet split and bleed From the swelling i have cronic joint pain i can not even take a deep breath as its too painful. I have now been diagnosed with an overlap of lupas/ rheumatoid disease , my hair is falling out , I've been struggling on thyroxine now for three years my inflamation marker is 200+I've tried swapping from t4 - t3 but my body won't absorb the t3 but as soon as I stop the thyroxine(t4) my pains and  aches go away my inflamation marker dropped from over 200 to 8 and my lupas dissapears my rheumatologist takes me off plaquanil as all of a sudden I do not have lupas or rheumatoid disease but without thyroxine I become severely hypothyroid , my skin becomes very dry I swell up I fall asleep on my feet and my endocrinologist  makes me take thyroxine (t4) again she says I will die without it and that my brain is screaming out for thyroid chemicals  I don't know what to do I'm back on thyroxine and my lupas is back my inflamation marker is high again and my joint pain is back my endocrinologist. Says that the thyroxine can not cause the lupas  and she says i can not b allergic to anything in it and that i cant be allergic to thyroxine as its exactly the same as what the thyroid produces but I know it is the cause of my problems !!! my rheumatologist thinks so too he doesn't know why or how but he agrees that I only have lupas when I'm on thyroxine my specialists are not giving me any options they tell me that I'm wrong and have to take thyroxine but I know its killing me its like I'm having an allergic reaction to thyroxine every time I take it , if anyone  can help me or if u know how I can prove that its making me sick please help me it is killing me I am so ill on thyroxine but don't know what else to try

[AlyonaAllie]

I had total thyrodectomy in December of 2011.my body went bananas 3 days after taking the pill. In March of 2012 I already had joint pain, etc. all the symptoms of lupus. Checked everything- no lupus for ANA, etc, but c4 and c3 were down, nobody could explain why, I asked for his tone antibodies to be checked- they were on the highest of normal, 5 months later they were much higher, above normal. At that point nobody could deny I had drug induced lupus- levothyroxine, synth road, and tyrosine all caused it. My endocrinologist at Mass General  said I am one in a billion and my case is unique. I don't believe it at all. I think my case just was more indicative of drug induced and it showed in 11 months. They will not record my case because I have to go through abscientific research study, and of course they know I am not going to do it. I am changing to Armour this week- my endo said my only option at this point. If it doesn't work I don't know what to do. Please push for more results. If your antibodies are against RNA( or single stranded DNA), it is drug induced, if you have double stranded DNA antibodies- they still will say it is your own lupus. Hopefully it helps.

[losbanos99]

Hi,

I have been experiencing the same thing.   I am looking and hoping for a connection because I would rather have drug induced lupus than SLE.    I went hypothyroid for the first time in Sept 2008.....quickly diagnosed and treated with Levothyroxine.

I was fine until Feb 2009....when I my body went nuts.   IBS, muscle fatigue, now muscle pain, brain fog, nausea.    
In Oct 2009....I magically was cured....after taking a colon cleansing treatment for 2 months.  Then in Feb 2010, it all came back.    I have been unable to shake it this time and it's been 16 months.   The latest diagnosis is Lupus becaus of high ANA titers.   So if you ever find out the answer to the question about Levothyroxine, please share.
Thanks,
Tony

[FTB4]

I read your post, I was just reading about "Drug Induced Lupus" because my daughter has the same symtoms, they said she had increased blood cells and a high CRP count. From what I read, there is up to 35 different prescribed medications that can cause this condition if you have a certain gene that it triggers. I am still looking for a complete list, although there is a group of Anti-Biotics, Blood Pressure Meds and some others I did not recognize. But the site said if detected early, and cessation of the drug would abort the condition, and they also had good results treating the condition with Anti-Inflammatory medications, ie: Ibuprofine, Moltrin etc.  If you Google "Drug Induced Lupus" you get several hits, I just have not read them all, only Wikpedia and they do not list all of the culprit medications. Good Luck FTB4