I’m taking a break from blogging this summer as I focus on my move, but in the meantime I have some great guest posts on various topics lined up from the autoimmune community. This post is by Alaena Haber, blogger at Grazed and Enthused.
Fertility… it may be the last thing on your mind if you’ve been newly diagnosed with an autoimmune condition such as Crohn’s or lupus. After all, reproductive health is something I certainly took for granted in my pre-autoimmune years. But many women with autoimmune conditions find they struggle to maintain a normal menses or ovulation, making conception incredibly challenging1,2. Once pregnant, females with autoimmune conditions are also more likely to miscarry3,4. Considering 1 in 12 females will develop an autoimmune condition in their lifetime, I cannot stress the value in assessing the role autoimmunity plays in fertility.
When diagnosed with an autoimmune disease, your doctor may explain that your body attacked your thyroid, your joints, or your skin. This reductionist approach prevents us from grasping the systemic effects autoimmune disease has on our bodies as a whole. I was diagnosed with Hashimoto’s thyroiditis at age 19, one week after a meal of fried tempura sent me to the emergency room with a 105 degree fever and a full-body rash. I had no symptoms of hypothyroidism prior to that event, but I quickly developed a goiter so large, I could not swallow solid food. The fatigue, hair loss, edema, weight gain, and depression quickly followed. Months passed before my doctor placed me on Synthroid to manage symptoms. After two years of adjusting the dose, we finally found one that alleviated many of my complaints. At this time, I decided to decrease the amount of synthetic hormones going into my body, so I discontinued my oral contraceptive. Six months later, when my menses had not returned on its own, I was told I had post-pill amenorrhea, a common condition for women with autoimmune disorders. Since then, I have been working with several clinicians– naturopaths, functional medicine doctors, and acupuncturists to restore my reproductive hormones to functional levels.
Childbearing is truly a gift we are given as women. I have a recurring daydream of chasing after a brood of giggling toddlers in a grassy park. The possibility this dream may not be my reality is an emotional strain I confront every day. After speaking with other women with autoimmune conditions, I realized I was not alone. While it is incredibly difficult to share my story with others, I hope that it encourages community members to take control of their reproduction using the Autoimmune Protocol and natural reproductive support. The following tips represent what I have learned and personally experienced during this process. As I am not a medical professional, information provided is not intended to treat or diagnose infertility but provide an account of my journey to reproductive health.
So how do you know if autoimmune disease is impacting fertility? I have outlined five steps to help you address reproductive health after your autoimmune diagnosis.
- Consider discontinuing synthetic contraceptives. I believe the first step is discontinuing the use of hormonal birth control methods and replacing them with external “barrier” contraceptives (i.e. condoms). Without this step, it will be difficult to determine if your body is presently capable of the hormonal production required for ovulation, menstruation, and pregnancy. Healthy women will generally see a restoration of their periods within 3-6 months after going off the pill. If your period has not returned by this time, it is in your best interest to work with a holistic health practitioner or gynecologist. They will be able to run the appropriate blood tests to assess where your hormonal levels currently stand. At the bare minimum, I request an order for estrogen, progesterone, LH, FSH, sex-hormone binding globulin, and prolactin. Some of these tests will help your doctor rule out a common cause of infertility called Polycystic Ovarian Syndrome (PCOS). If your estrogen, FSH, and LH are low, this may indicate post-pill amenorrhea. A high FSH can be used to determine premature ovarian failure, the medical term for menopause onset prior to age 40, while high estrogen is common with a condition called estrogen dominance. It is important to note that many practitioners recommend saliva testing5 if estrogen dominance is suspected.
- Be an independent learner. I visited multiple gynecologists, all of whom ran every test and scan imaginable to determine the cause of my amenorrhea. The results of thousands of dollars spent: “you’re just not ovulating.” I could have spent that money on a trip to Europe where my Italian boyfriend, Giovanni, awaits to romance me with moped rides and his grandmother’s marinara. My point is doctors do not always have the time and resources to give you adequate information to empower your understanding of hormonal balance. The Internet is your most priceless (literally) source of information. I suggest using reputable databases such as PubMed or an alternative health website that you trust. A couple of my go-to’s for digestible and trustworthy information are Chris Kresser (link: https://chriskresser.com/) and Stefani Ruper (https://www.paleoforwomen.com/).
- Explore alternative treatments. Many of us on the Autoimmune Protocol have already accepted that Western medicine is not a cure-all. While I maintain a relationship with my endocrinologist, who prescribes my Synthroid, I receive additional advice and supplementation from alternative health practitioners, namely a naturopath in Chicago. Since I refuse to take synthetic hormones to simulate normal menses, I have experimented with several Traditional Chinese Medicine (TCM) herbs. Personally, I have seen success with black cohosh, dong quai, and wild yam. I have several friends who have successfully used acupuncture to treat their menstrual irregularities as well. It is important to only begin a supplementation regimen after speaking with a practitioner you trust. Taking a solo cruise down the wellness aisle at Whole Foods without proper research and guidance will only leave you with empty pockets and an overflowing supplement graveyard.
- Track your hack. Chinese herbs are not without their side effects. When beginning a new supplement, I journal my symptoms, mood, and activity levels every day for at least 4 weeks. This practice has helped me quickly weed out herbs that either are ineffective or causing flares in my autoimmune disease or leaky gut. For example, L-glutamine exacerbates my histamine intolerance symptoms such as facial swelling and depression, and I was able to determine that within a few days, saving myself money and discomfort. That being said, I also recommend sticking with a new supplement for at least 8-12 weeks even if you do not see any immediate changes in your hormonal health. It can take months for your endocrine organs to restore balance and function optimally.
- Be steadfast and buoyant. I could have given up on my fertility years ago. It would have been easy to ignore. My menstrual irregularities do not cause any physical pain or obvious symptoms. But it is the daily mental tick to achieve full-body wellness that has kept me on my healing journey, helping me find the Autoimmune Protocol. It’s the idea that I can’t give up on myself although the doctors already have. People with autoimmune disease are not strangers to frustration. Our ambition for disease management is constantly being challenged as we navigate our “new” bodies. I urge all autoimmune community members to confront their concept of self. Is my name Hashimoto? Do you want people to call you Rheumatoid or Colitis? Of course not. My occupational therapy instructors always remind us that our patients are not their disease but a human facing a challenge called diabetes or autism. I do not to let my autoimmune disorders determine how I feel about myself. I have accepted that children may not be in my future, but I refuse to let that affect my self-esteem and life satisfaction. I am grateful for the opportunity to nourish my body, help others do the same, and to keep on trucking along with the support of my husband, dog, family, and friends.
It is okay to be angry (I’ve been there), but after anger must come action through self-advocacy. There is always an unexplored path waiting to be found. My journey towards balancing my reproductive health began 7 years ago, and I cannot pretend it hasn’t been full of anguish and frustration. But I continue to learn more about myself each day through fact-finding, n=1 testing, and the positive mindset that it will end how it is intended to end. If you are struggling with fertility or thyroid issues and want to learn more about my progress, please email me at [email protected] .
1Carp, H., Selmi, C., & Shoenfeld, Y. The autoimmune bases of infertility and pregnancy loss. Journal of Autoimmunity, 38, J266-J274. Retrieved July 7, 2014, from the PubMed database.
2Drexhage, H. A. Premature Ovarian Failure and Ovarian Autoimmunity. Endocrine Reviews, 18, 107-134.
3Gleicher, N. Endocrine autoimmune diseases and female infertility. Nature Reviews Endocrinology, 10, 37-50.
4Schott, M. Thyroid autoimmunity and miscarriage: a meta-analysis. Yearbook of Endocrinology, 74, 172-173. Retrieved July 7, 2014, from the PubMed database.
5Hampson, E., Morley, E. Estradiol concentrations and working memory performance in women of reproductive age. Pyschoneuroendocrinology, 38, 2897-2904. Retrieved July 7, 2014 from the PubMed database.
>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>Alaena Haber is the creator of the Paleo and AIP recipe website “Grazed and Enthused”. After eating standard Paleo for two years, Alaena transitioned to AIP six months ago to combat lingering symptoms of Hashimoto’s, leaky gut, and histamine intolerance. Alaena’s passion for holistic wellbeing shows in her dedication to sourcing nutrient-dense ingredients for creative and flavorful recipes. She believes each meal is an opportunity to show respect for oneself and gratitude for others. Alaena hopes to reach members of the autoimmune community who need inspiration and support during their healing journey. She lives with her husband, Jeff, and cockapoo, Rafael, in Chicago while attending a full-time occupational therapy master’s program.
You can find her on Instagram (https://instagram.com/grazedandenthused), Facebook (https://www.facebook.com/grazedandenthused) and at her website (https://www.grazedandenthused.com).
This post leaves me feeling really sad and full of anxiety about the future 🙁 I’m only 22 and have hashimoto’s and can’t bear the thought of not having children…I am more recently off birth control as I wanted to get off of it to see if that was exacerbating by symptoms and am waiting for my period to come. I guess I just don’t really know what to do or who to meet with about getting ahead here or if it is possible to still have children – from this post, I am interpreting it as I won’t be able to?? (I know hashimotos/AID are very individual) but I guess this post was less than inspiring for me 🙁
I am sorry you felt disheartened by my article. That makes me sad because that is certainly not the intention by any means. I wrote the article as both a cathartic, informative, and supportive resource for other young women with my same fears. I could easily have given up on bearing children considering my 7 year struggle, but 7 years later, I still continue to pursue the possibility in every way possible and feel VERY hopeful that I will have children. It may be a personality difference, but I suggest finding positivity in every step of your journey as a recently dx-ed AI patient. Please email me if you need to talk more in detail. Try not to extrapolate my experience into your own. I certainly have a different pathology, genetic background, disease process, etc than you, so please only use my learned knowledge as an empowering guide to address your fertility.
What an important post, Alaena. Thanks for all the thought, research, and heart you put into it. I also want to say that I love this quote from your bio at the bottom: “She believes each meal is an opportunity to show respect for oneself and gratitude for others. ” I love that!
Thanks, Eileen! I appreciate you reading and responding to the article. Fertility is a rarely talked about, slightly embarrassing topic, and I really wanted to share my experiences so far because I know many other women struggle with the same thoughts.
This is such a great post. I struggled with infertility for two years and it was such a difficult experience. I was able to conceive after switching to only eating sprouted wheat and starting acupuncture and Chinese herbs. Unfortunately I didn’t see the connection at the time and contined to consume gluten. I was diagnosed with Hashimotos when my daughter was two. After switching to the Paleo diet I easily conceived my second baby. I share this just to say that infertility can be healed with diet! I wish I had known that years ago.
What an inspiring story for all of us! I am so happy for you that you were able to bring two little sweeties to this world. And even happier that you gained a lucid understanding of what your body needs for optimal fertility. Cheers to Paleo!
This is an important article, but a little sad! I didn’t know until recently that autoimmune conditions can affect fertility. Thank you for the helpful information you share here, Alaena. I would like to have children in a couple years.
What is the best way to get tested for an autoimmune disease, to get a clear diagnosis? I’ve read that some testing methods are better/more accurate than others. I am gluten-intolorant, and highly suspect I have leaky gut – but I really want to be tested by a professional. I am folowing the AIP food plan right now.
Autoimmunity does not always produce fertility issues, but there definitely are many women who struggle with conceiving and maintaining a healthy pregnancy compared to the non-autoimmune population. Because there is such a variety of AI diseases, there is not one “go-to” test for diagnosing an autoimmune condition. Often doctors will run a series of blood tests, GI scopes, or scans to rule out other diseases that mimic the symptoms of AI conditions. For example, most people with lupus have high ANA (anti-nuclear antibody) when in active stages of the disease, but high ANA cannot be used alone to diagnose the disease. Doctors will often order inflammatory tests such as CRP and ESR and Complement tests to rule out other causes of symptoms. My Hashimoto’s was diagnosed by a high TPO (thyroid antibody) and high TSH plus the well-documented symptoms of autoimmune thyroiditis like goiter, fatigue, and swinging into hyperthyroidism.
If you suspect you have leaky gut, there is a good chance you are correct. There are a couple tests for leaky gut, but I have not done any of them (one being Genova Diagnostics). Again, I would never rely on just one test for a diagnosis, but looking at the bigger picture seems to give me much more reliable information on my health status. For example, I had the hallmark symptoms of leaky gut (IBS, weight loss, malabsorption, food allergies, food intolerances, eczema, etc). I did not feel the need to spend hundreds of dollars to confirm a diagnosis I had already confirmed myself. If you cannot find an Internist you trust to recommend you to specialists for further testing, I would recommend finding an ND or functional medicine practitioner in your area. Hope this information helps you!
“Be steadfast and buoyant.” I LOVE that…it is so perfect for those of us with AI, but also for all of life. And I agree, having a true concept of self is so important. It is far too easy to be ‘absorbed’ by struggles we face. Charlotte, I’m also 22, and have Hashi’s…was Dx 3-4 years ago after 2+ years of issues. Don’t give up! Having a good team of medical (alternative and/or conventional) folks is really important, but sometimes it takes a while to find them. I currently have an incredible MD, an ND (who has done so much for me), and a chiropractor/massage therapist/myoskeletal technician. I also know a few folks with Hashi’s and try to stay connected with them–something I wish I had focused on sooner. My immediate family is very supportive, as well.
You hit the nail on the head! Social support, a qualified medical team, and a positive attitude are absolutely necessary when facing autoimmunity. It’s so good to hear your family is understanding and that you have friends to both vent to and share successes with!
Thank you so much for posting your experience with infertility. I’ve been struggling with it for two years now myself (and still going through the whole rigmarole with various doctors to find out what the real issue is), and it can be such a disheartening process. I really appreciate the advice you offer, and thank you for reminding me that I’m not alone in this struggle. I wish you all the best on your journey.
I appreciate your comment so much. It’s a difficulty and scary health topic to address, especially alone in multiple doctor’s offices. I spent several years seeing doctors who just told me to “gain weight” and “stop exercising” (even walking and yoga) like that was the solution to all menstruation problems. I knew in my gut that my hormonal imbalance was coming from an entirely specific cellular pathway that couldn’t just be fixed with misguided lifestyle changes. I am so happy to have found a naturopathic doctor who is empathetic and patient!
[…] You should recognize Alaena from the wonderful blog post she penned for me this summer about autoimmunity and reproductive health. If not, be sure to visit her blog for some laughs and delicious eats! Although I didn’t have […]
[…] that I could have children it is often not as easy for women with autoimmune disease to conceive (read more about this here). I began to realize that something I always had thought of as part of being a woman was a […]
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