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Do Estrogen and Progesterone’s Rise and Fall During Your Cycle Create Autoimmune Flares? (Yes, Unfortunately.)

Girlfriends having coffeeWhich hormones fluctuate throughout the month during my cycle – estrogen and progesterone, or just estrogen?

The menstrual cycle proceeds through a complicated and highly coordinated dance of hormones.  By convention the cycle begins with menstruation.  During this time, levels of estrogen and progesterone are low.  During the next part of the cycle, levels of estrogen begin to rise, reaching a peak around the time of ovulation.  After ovulation, levels of estrogen remain relatively high, dropping off in the days leading up to the start of a period.  Progesterone levels remain fairly low before ovulation, but then remain high, dropping off just before menstruation.  Other hormones change cyclically too (such as the ones triggering ovulation), but estrogen and progesterone are the hormones thought to be most important for premenstrual syndrome and possibly symptom flares in women with autoimmune disease.

If my autoimmune symptoms seem to get worse when these hormones are high or low, is this typical?

Not all women with autoimmune diseases note symptom changes with their menstrual cycle, but many do.  Sometimes it may be difficult to distinguish a pattern, since symptom exacerbations may be triggered by many other factors.  Many women with rheumatoid arthritis, for example, report decreased joint pain in the period right after ovulation, as well as during pregnancy—both times when levels of estrogens and progesterone are high.  These women may note increased symptoms when these hormone levels are particularly low, such as during menstruation or in the postpartum period.

One questionnaire found that 70% of women with multiple sclerosis noticed cyclical changes in their symptoms, with the worst symptoms in the week before the start of their period.

Women with lupus also often note symptom flares just before and during their periods.  There is not one specific pattern that applies to symptom flares in all types of autoimmune diseases, though within specific diseases there is often more of a pattern.

Have there been any research studies about why hormone level fluctuations throughout a monthly cycle can worsen autoimmune symptoms/create a flare?

More research needs to be done on the relationship between hormone levels and autoimmune symptoms.  It is well understood that steroid hormones, including estrogen and progesterone, influence the development of immune cells and modulate the output of the immune system.

Many immune cells have receptors for these hormones, including many of the immune cells responsible for creating autoimmunity.   It is not surprising, then, that variations in hormone levels during the menstrual cycle might lead to changes in symptom severity.

Certain hormones may tend to activate a certain part of the immune system (e.g., the TH1 response, which activates macrophages) while simultaneously tampering down another part of the immune response (e.g., the TH2 response, which promotes the activation of B cells).

Some hormones, such as estrogen, may enhance the immune response at low levels while generally inhibiting the immune response at very high levels.  Sex hormones also activate specific genes, some of which may play a role in symptoms flares or symptom reduction.

Many of details about this are still being worked out, however, and most of the work that has been completed has involved animal models of autoimmune diseases or simpler cellular systems.  It is a very complicated problem to study; in a human being, multiple levels of hormones are changing concurrently, each of which might have some effect on the activity of the immune system.

Could hormone therapy help regulate my hormones to assist with leveling out autoimmune symptoms?

It might.  It also might exacerbate your symptoms or have little effect.  At this time, there is not a general clinical recommendation supporting hormone therapy in autoimmune diseases.  Research on this is in a preliminary stage, and the amount of information available varies by disease type.  For example, current evidence suggests that postmenopausal women with rheumatoid arthritis who use estrogen therapy may have fewer symptoms.  Other clinical trials of postmenopausal women with lupus have found increased disease activity with estrogen therapy.

Research on premenopausal women is also in a preliminary stage, but some evidence suggests estrogen therapy may lead to decreased symptoms in multiple sclerosis; clinical trials are ongoing.

Questions for your doctor:

  • What (if anything) is known about whether birth control pills or other hormone therapy might help with symptom reduction in my particular autoimmune condition?
  • If am pregnant, is there anything I can do to help prevent a postpartum disease exacerbation?
  • If hormones are thought to exacerbate symptoms in my autoimmune condition, what other non-hormonal options for birth control are available?

Have you noticed that flares that are related to certain weeks in your cycle?  Share your experience below!

 

About the Author
Ruth J. Hickman, MD, is a freelance health, science, and medical writer.  She specializes in writing about medical topics for the lay public and for health science students.  She can be reached at [email protected] or through her website: ruthjhickmanmd.com.

This post contains opinions of the author.  AutoimmuneMom.com is not a medical practice and does not provide medical advice, diagnosis, or treatment.  It is your responsibility to seek diagnosis, treatment, and advice from qualified providers based on your condition and particular circumstances.  Camino Real Ventures, Inc., the company that makes AutoimmuneMom.com available to you, does not endorse nor recommend any products, practices, treatment methods, tests, physicians, service providers, procedures, clinical trials, opinions or information available on this website.  Your use of the website is subject to our Terms of Use and Privacy Policy

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Comments

  1. Vicky Hughes says:

    Hi, I am a 37 year old female living in the UK.

    2 years ago I had a major postpartum haemorrhage, lost approx 8 litres of blood. I was heavily transfused. Since then, I have been increasingly unwell and have had to give up work.

    I have severe joint pain, which worsens when I ovulate, and seems to settle for a short while after my period. I am breathless and exhausted after just walking upstairs. I have a rapid heart rate, cold feet, headaches, repeat infections and hair loss. I have just had an MRI on my spine (they were looking for MS lesions) which shows I have hyperplastic vertebral marrow. I am seeing the haematologist on Monday coming, also waiting for referral to rheumatology.

    All my blood tests are fine, so it can’t be anemia or myloeddysplasia, which has been the suggestion by the hospital upon seeing my MRI.

    Would anyone have any ideas what is wrong with me? Getting desperate for some help and advice.

    • Amber Parker says:

      I have a story similar to yours αnd discovered I had an autoimmune disorder called POTS (Postural Orthostatic Tachycardia Syndrome). Have all your symptoms αnd more. Before I found out what I had, I thought I might have hypopituitarism, which is when your pituitary gland no longer provides the signals that your body needs in order to produce more secretions of hormones so they can be sent throughout your body. Therefore an imbalance of hormones αnd even some thyroid dysfunction is expected. This can happen after an extreme amount of blood loss, during the time of losing that blood, a small area of your pituitary gland experienced some tissue death of cells. Well, since this gland is the brain network of telling the body what hormones it needs, it’s like a bunch of static during the communication αnd these symptoms will follow. Do some research on this, hope it helps.

  2. Katie Cleary says:

    Hi Vicky,
    I’m sorry for the pain you’re going through and the lack of diagnosis. I hope the doctor appointment gave you some clarity. There is a Q&A section of this website, and I can also post your question on Facebook. The Facebook AutoimmuneMom community is pretty fast at answering questions, so that might be the quickest way — let me know if you are all right with me posting it and then I can get back to you with the answer or you can “like” the page and watch the answers as they come in! It’s up to you and I would post the question as an autoimmune mom friend so it won’t have your name etc.
    Thanks and take good care,
    Katie

  3. Vicky Hughes says:

    Thank you so much, any help would be appreciated. I saw the haematologist yesterday, and they are not going to investigate the marrow problem, they as my blood tests are fine it was probably an incidental finding? Still waiting for rheumatology appointment.

    Please post on my behalf, maybe someone out there may have an idea what I can do next.

    Best wishes and thank you again, Vicky.

    • Katie Cleary says:

      Hi Vicky,

      Ok I posted this and I’m sorry it took me a while to pull all of the responses together to reply on this. Here were the ideas:

      -Have they checked thyroid levels including TSH and reverse T3?
      -Please have your thyroid tested thoroughly as all of your symptoms sound very thyroid related. Make sure they at minimum test your TSH, T4, T3, rT3, Free T4 and Free T3 and B12, Vit D, TIBC and ferritin and ANTIBODIES, not just the TSH and T4, that is a limited picture. All of your thyroid panel can be normal and yet all of your symptoms can be present with the autoimmune disorder itself. I know, I live it everyday. This article helps to explain what happens BEFORE the thyroid actually begins to fail. Hope this helps a bit.
      -Have you been checked for coeliac? Or Hashimoto’s?
      -I’ve been sick for years. Just found out it’s late stage Lyme’s disease. It could have come from your transfusion. I would find out if its a possibility.
      -Check for Babesia that could have been in the blood transfusions !
      -Had a similiar experience at about the same age. 25 years later they reviewed my history and decided it fit into the pattern of a blood disorder. Just remember if you have one autoammune disorderyou could have more. Hope you get answers soon.
      -My guess would have been Hashimoto’s and possibly adrenal fatigue with that. That’s how we with the disease feel — exhausted, headaches, hair loss, infections, all over body pain.
      -Thyroid Pharmacist, Dr Izzabella ? Here on facebook may be helpful
      -Definitely see a cardiologist. Rapid heart rate shows your heart is under stress. I have SLE and have had constrictive pericarditis
      -I’ve had adrenal fatigue and those are very similar symptoms. Biggest part of my treatment was good whole food brand vitamin c in larger doses to heal the adrenal gland. (Get a 24 hour saliva test)
      -Sounds like addisons
      -I have a condition called dysautonomia which gives me many of those symptoms , fatique , rapid heart rate etc. I have rapid heart rate while standing and anything else I do.

      As you can see there are a lot of ideas — I hope this helps rather than overwhelm. Don’t give up and thinking good thoughts for you on your quest to find the right doctor who will listen and give a diagnosis. Please keep us posted! xo, Katie

      • Vicky Hughes says:

        Well funnily enough Addison’s has been mentioned by the Haematologist, also Sheehans Syndrome, where your pituitary gland gets starved of blood during a post partum haemorrhage. My thyroid function is fine, everything they’ve tested so far is normal. I have not been tested for Lyme Disease, or a any other virus. Unfortunately, I do not have a supportive Doctor, and am at the mercy of the long NHS waiting times. I have to go back and see the Haematologist in 6 weeks when they will decide wether to discharge me from their care or transfer me to another department. So frustrating when you need answers and want to well for your children! I am touched by the responses and thank everyone for their comments.

        • Michelle says:

          Hi Vicky, did you get anywhere with the NHS at all? I have been struggling along for 2 years and my doctor refuses to refer me to a rheumatologist. Your symptoms sound very similar to mine. I just want to be well for my children too :(

  4. I’m 30 and have had Crohn’s Disease and related Arthritis for 21 years. I also have issues during low estrogen cycle times, mostly in the week leading up to my period. I’m currently TTC and having difficulty as I have a mini flare following the time when I should be ovulating and during the time I could be conceiving. I’m having difficulty, and I’m wondering if the flares are preventing me from conceiving. The first two weeks of my cycles I feel great, aside from the normal period cramps. Very frustrating.

    • Hi M.E.,
      I hope you see this response & you’ve gotten pregnant, but I want to share something with you. My doc’s know I have a non-specified autoimmune disorder (2011), possibly Crohn’s. I’m hoping my next scope/biopsy’s (7/14/15) will shed some light on these horrible GI issues. (Symptoms: doc’s say aren’t related, but I KNOW they are…. Migraines, Swollen Joints, Mouth Sores, Nerve pain, Carpal Tunnel, Fatigue “flu-like”). Steroids always help, side effects are like hell, but it’s better than urgent, painful, mucus, diarrhea then nausea/vomiting.
      I want to you to know that I FINALLY got pregnant in 2013. It was during my BEST remission (2 months) and I felt better than I had in 2 years. A year prior to getting pregnant (2012), my Ob/Gyn wanted to remove my ovaries due to the painful Complex/Fluid filled cysts on my R&L ovaries (lasted 1+yr). My husband and I knew we wanted one more child, but I also wanted to feel “NORMAL” again. I prayed and prayed and they miraculously disappeared when I went into my 2 month remission. My OB/Gyn said we could start trying to get pregnant, but not to get my hopes up. I got pregnant in 1 month. Maybe in was the steroids treatment prior to the remission, prayers……. but I do believe there was POWER in my POSITIVE thinking. I felt healed. I was also “Flare-free” the entire pregnancy and while nursing (best bowels since 2011….you might understand, lol)! 6 months after weening nursing, it all has come back with a vengeance & my positive thinking has dwindled, but I have the most beautiful, healthy ,baby boy, who reminds me to never give up & you should not give up as well. Try to conceive when your in remission and your mind is filled with optimism & positivism. Blessings to you my love!!!!!!

  5. I am going to the doctor today. Its been just a few days under 4 years since I had my daughter and my life has been turned upside down by these auto immune flares. I haven’t been diagnosed yet but believe me I have tried. My veins and arteries get swollen and so painful. I also get arthritis symptoms or should I say swelling in my hands and feet and knees. These are just flare ups though and usually come on during my period. I also get fatigue extremely bad. Its usually one or the other symptom instead of both at the same time but they will come after each other. I hope I get help today and I hope the doctor listens.

    • Michelle says:

      Hi Sarah, I have the same vein symptoms. Mostly around ovulation or around my period. The doctor looks at me like I am stupid and says there is no such thing as vein pain. Some times they are visibly bulging on my hands. The fatigue is horrendous. Short on breath and I look like I have been dug up!
      Did you manage to get anywhere with a diagnosis?
      Thanks,
      Michelle

      • Hi Michelle,
        The only thing my regular doctor found out is that I have high levels of c reactive protein in my blood (inflammation markers). She sent me to a rheumatologist but I got absolutely no where with the rheumatologist. She acted like she had no clue what I was talking about and I am guessing she is not used to getting cases that need investigating. She flat out told me ,” I dont know what to tell you. High C reactive proteins dont mean anything.” She told me we could do an ultrasound of my neck carotid arteries just to shut me up because she knew I was not satisfied with her “I can’t help you further” attitude. I also got an x ray of my hands. To my great disappointment my insurance didn’t approve the ultrasound, I guess me saying that if I do sit ups it feels like I’m having a stroke and my lower face muscles go weird wasn’t enough for them, or the migraines but I did get the xray which I knew wasn’t going to show anything because its my most mild and least occurring symptom and isn’t severe enough to cause permanent damage. I haven’t been back to my original doctor because I have no energy and each time I reach out and waste so much energy it takes me a long while to go through it again. I will go back though and I’m going to see if she can get me the approval. YES VEIGNS HURT! Its horrible isn’t it!? Its similar to the same feeling you get from slapping your hand too hard or jumping too high onto your feet, that sting. Almost like a brain freeze but in your vein. It gives me such bad migraines.

        • Nicola Houlden says:

          Hi Michelle, your story sounds so familiar to mine, I normally get frustrated with people saying that as it does not help a thing, but the reason I say this is because I can very much relate to quite a lot of the things you have said, and yes your RIGHT your veins can hurt! And your right they do look at your as if to awww c’mon now I’m sure it’s not your veins that’s hurting!!!! I have this along with other symptoms as well. I’m sick of going back to the doctors to be told their sure my symptoms aren’t really like that ie/ swollen veins etc…. And am I sure it’s not just depression!! Yes I am down, down about the illness I say and yes feel low and overwhelmed by how this is affecting my life, but I know this is definitely happening! So I’ve gone of and done as much research as possible on these things and sure enough time and time again I have found these things related to a autoimmune diseases, and the thing is with autoimmune the things like sore/swollen veins etc is that they do NOT show up in any blood test and just looking at the veins in general does not give the correct answers, but in my research I have found this relates to musculoskeletal problems! I have been diagnosed with fibromyalgia so started research on this and most things related, the thing is with musculoskeletal is, it is actually the lining of the body underneath your skin that holds muscles, tendons,leads, ‘veins’ all in there place!!!! So with that a flare up or long term of this is actually the skin lining tightening therefore squeezing muscles, tendons, VEINS, and because autoimmune are inflammation, the body then sends out signals of distress to where ever is being squeezed and whatever is being squeezed swells up to protects itself, so yes it’s not a normal thing for the body to do but that’s what autoimmune is….. The body is sending out these alert cells to distroy or protect an area of pain, swelling etc, therefore it’s affecting the veins. I believe this to be very true and accurate and I really feel this is exactly what happens!! The problem is there is not enough research done into autoimmune or a direct doctor you can see which is very frustrating and upsetting, it’s a case of trying different doctors until you find one that’s either come across autoimmune before or has worked around it previous, I know this all seems long winded but just trying my best to explain, so I hope some of this helps for you :-) take care,,, even though some days that is all the energy we have just to literally to take care enough to get through a day, I wish you luck x

        • Nicola Houlden says:

          Oooops, I also meant to say, the biggest thing I can relate that you said is that you haven’t been to the doctors for months! This is so me, you end up coming out more frustrated and upset than when you went in, then for days after you feel exhausted and drag yourself about then wonder why you bother doing this to yourself! I’m so fed up of that. Another thing you said you had headaches… So in my research for that I also found this to be a musculoskeletal problem, because the lining of the body is tightening it is also squeezing lightly on the blood vessels around your head thus dulling bloodflow, causing mild headache to migraine, also you said about your jaws aching, again I found this very popular with People diagnosed with musculoskeletal autoimmune and the reason being is that- again the lining is tightening and quite commonly affects the jaw, the muscles being squeezed causes a jaw misalignment with can cause all sorts of symptoms of headaches, aching jaw, a chance to your teeth and gums etc…. Again I hope this helps, I am not a doctor of course and not saying this is definitely you but I hope it’s a little bit of help which can start you of! Google musculoskeletal auto immune and autoimmune jaw misalignment, it’s quite helpful. Again hope I haven’t waffled to much and some of this helps,
          Again hope you get help,
          Nicola xx

          • Michelle says:

            Hi Nicola, thank you for the musculoskeletal auto immune research recommendation. I will definitely have a look into it. I think I probably no more than my Dr on some things from the Internet. She looked at me blank when I asked her to test my ANA’s as everything else had come back with nothing. Low and behold the anti CCP came back at 386 when 60 is classed as possible aggressive rheumatoid arthritis. I just don’t think Dr’s are trained well enough in these fields. You didn’t waffle at all, we need all the help and advice we can get from as many people who suffer similar symptoms.
            Take care and thanks again.
            Michelle
            X

          • Dawn Wetter says:

            I chalk my jaw pain up to Trigeminal Neuralgia. I haven’t officially been diagnosed with TN, but I have other auto-immune disorders (MS, R/A) and it’s common for MS patients to have this. Just something to think about…

        • Michelle says:

          Hi Sarah,
          How funny, my anti CCP which I believe is C reactive protein is through the roof. Since first posting on here I have managed to get a referral to a rheumatologist who believes it points strongly to rheumatoid arthritis but has also mentioned Fibromyalgia. I am currently having a bad time again with the feeling of inflammation inside my body and breathlessness. It really is a dreadful feeling so can empathise with you. My second rheumatology appointment went very badly. She hardly asked me anything and told me there was nothing she could do as my hands or feet weren’t bent and crippled. She could offer me chemotherapy drugs if I really wanted but I don’t want to just mask a problem when they don’t know what it is. I want to figure out what is wrong?? Have you seen a website by a Dr Myhill? She has some very interesting research on there, I have just ordered her book so will see how I get on with that.
          Thanks for the message on you take care too
          Michelle x

          • Thanks for the reply Michelle. Nicola, you had some great info to share. Im so glad we at least have each other to talk to. I know this might sound really odd and crazy but I think Im going to try out bee sting therapy. It seems to work for arthritis and fibromyalgia. Im going to try it and ill let you know how it goes . :)
            http://www.apiterapia.hu/news/news/117/bee-sting-therapy-on-autoimun-deseases.html?lang=en

          • Hi to Sarah, Esk I just want to say a sorry to Sarah as I jumped in on your post, not intentional hun, yesterday was the first day I’ve ever saw this site, as I was looking for info on why I would be so much worse the week before my monthlys are due! And Michelle’s comments came back in one of the searches, it wasn’t until I went to reply I realised it was a whole site and so I joined, wow looks like I have some catching up to do :-) I will read through the whole post and therefore get a feel for how your doing, what you have etc… And see if I have any other info I can share.
            But yeah your right it is nice to have other people who understand as people who have not had anything like this just could not understand how bad these things are!!
            It’s crazy that they don’t have specialists or a team that even work in hospitals that you can be referred to for help and to understand why these things are happening as it seems a large amount of people are left clueless and living a painful debilitating life, it’s so awful! It’s a scary thought to be out there on your own with conditions that your own doctor looks at you strangly about, take care hun xxx

          • Michelle bertucci says:

            Hi Sarah, it would be very good to hear if you have any improvement with the bee venom therapy? An interesting read with regards to the autoimmune reaction and hormonal controlling system topic.
            Michelle

  6. belinda Quardey says:

    Hi, I have been diagnosed with mixed connective tissue disease. I have noticed when the weather is warm I am relatively pain free but when there’s a change in weather especially when it’s cold I turn to have flare ups. Any suggestions as to how I can help myself when the situation gets bad ?

    • TAMMY HANCE says:

      hello, I have eds and I have been having a terrible time with menopause. I am 53 and no hot flashes, still have a period every 4 weeks. I just feel like I have the flu when I should be ovulating on the 12th day…..I ovulate on the 18th day now. or I get sick when I am having my period. I feel like im estrogen dominant… estr – 61… prog -1.7…test – 45….. fsh 54…lh 32….

      • Susan Housley says:

        Hello Tammy , I have been experiencing flu like symptoms for years, I haven’t had a period since September 2011 but I am still cycling. The symptoms start round about where I should be ovulating and continue on until I would have had a period.

  7. Hi, so i’m so happy to see this article and read the comments. I pray that someone reads this and may have some answers. Sometimes, I can feel so isolated and misunderstood. I’ve been dealing with relapse/remission “flare-up’s” since 2011. I thought I would get answers when I landed in the hospital with a horrible case of Colitis that took 6 months and multiple antibiotic’s to clear up the infection in my bowels. Yet still no answers. They removed my gallbladder; which did help my GI symptoms for a couple of months, but they always creep up. Especially in the hot summers months. I’m plagued with migraines they call “Occipital Neuralgia”, steroid injections and Fioricet do help. I had carpal tunnel so bad on my right hand that even after 1 year post surgery, my muscle in my thumb still hasn’t come back 100%. Now my left hand is acting up. Eye lids (upper/lower) swell like I got stung by mosquitoes; Fatigue (flu-like); Swollen joints; Cysts (Complex/Fluid filled R/L Ovaries); Nerve pain (more irritating then debilitating); Numbness/tingling in hands/feet; Sweat attacks; Muscle pain (Knots)…….yet all my doctors look at me like I’m crazy, because no definitive answers from lab/scopes. I did have 1 MRI that came back and the radiologists stated on the report that it looked like MS Lesions on the white matter of my brain in multiple locations, but the neurologist said no way.
    However, when I became pregnant in 2013, everything disappeared. Yet 6 months after I stopped breastfeeding, it has all come back with a vengeance. Steroids always clear me up, but the side effects are horrible. I also noticed my symptoms are really bad about 2 weeks before I start menstruating and stress defiantly will make my symptoms worse. I even asked my doc if we could trick my body into thinking it was pregnant and you should have heard the “crickets chirping”, she must have thought I was crazy. I wonder if I am crazy, is this all in my head, am I depressed…..but I so want to enjoy life, take care of kids, MOW MY YARD, plant flowers, go to parties, but I’m too exhausted to get out of bed or stuck in the bathroom. How do you keep searching for answers if multiple doctors can’t find out why I feel so bad? When do you give up?

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