My Battle with Postpartum Thyroiditis

My battle with postpartum thyroiditis

A Hypothyroid Mom reader named Jenny contacted me with her story of postpartum thyroiditis and it felt so familiar. I have lived through postpartum thyroiditis after the birth of both my sons. At a time when a mother is expected to be filled with joy at the miracle of her babies, women with postpartum thyroiditis struggle feeling alone, often misdiagnosed with postnatal depression or anxiety, all while their thyroid is left unaddressed but wreaking havoc on the mother’s mind and body. But no one really wants to hear that. We are hushed and dismissed or carelessly misdiagnosed with mental health issues.

It is well known in the medical world that there are 3 times in a woman’s life when she is most vulnerable to develop a thyroid condition or worsen an existing one, known as the 3 Ps: Puberty, Pregnancy/Postpartum, and Perimenopause. With over 700 million people with thyroid issues worldwide, and over half unaware of their condition, postpartum thyroiditis is more common than anyone can imagine, yet thyroid testing is not part of routine screening at a woman’s first prenatal visit when she is newly pregnant (and it should be!)  nor at the first postnatal checkup around six weeks after giving birth (and it should be!) .

Jenny wrote,

“I write to you Hypothyroid Mom not to complain or grumble, but to raise awareness. To be a silent friend so that other women can read and feel someone understands. During my harder days, I felt so alone.”

Written by Jenny Allen

I call it a battle because that is what it was.

To find someone to listen, to understand or to even know about the symptoms and nature of postpartum thyroiditis was impossible. At it’s worst I thought I was going to die and truly believe that I am here now only because I have three incredibly supportive family members.

I was happy. I gave birth to a beautiful baby girl on July 7, 2017. My life felt complete. I slipped into the role of mum far better than I could ever have comprehended. With support from two fantastic midwives I overcame the initial hurdles of breastfeeding and was overwhelmed by the joy this brought. We spent three and a half months, walking, talking, reading, doing yoga, meeting friends, and really enjoying life. On Monday 5th of October I obtained a Masters degree, that I had completed whilst pregnant. Once my daughter was in bed I had a glass of prosecco and celebrated. Life was good and I ‘said’ thank you for this on a daily basis. I explain this not to gloat but to help you understand the transition – this is significant.

The only thing I found a little frustrating was that, every now and again (even though my daughter slept through), I would be wide awake for most of the night. My bedtime routine was more rigorous than my little girls, filled with baths, lavender, books and ‘sleepy tea’.

After we celebrated my Masters results, I had three sleepless nights. I began to get nervous about going to bed and could think of nothing but sleep. Enough was enough. I made a doctor appointment and presented with sleeplessness and explained that I couldn’t stop thinking about how or why I wasn’t sleeping. This was inevitably making me feel low.  There was a suggestion of postnatal depression and I was referred to mental health services and told to contact my health visitor. I got some sleep that night. The next day, I went for a run and had some ‘me’ time but could not switch my brain off. Constantly asking myself ‘have you switched off? Are you thinking about sleeping?’ and repeatedly checking my own thoughts. I carried on and attended baby massage – surely this would be a big enough distraction from my own mind. It wasn’t. The thoughts continued ‘are you depressed? Can people see you are depressed? Do people think you haven’t bonded with your baby? Have you switched off? What are you thinking about now?’ I got hot and nervous, made my excuses and left.

I felt like my body was shutting down physically and mentally.

Straight after this class my little girl had her vaccination injections. I broke down and I battled to see a doctor. I felt desperate, my mind was whirring and I was sleep deprived. I was prescribed Sertraline for ‘my anxiety’ (only 25mg) and was sent on my way. I have always been proactive with my mental health and so I was. I found a wonderful lady and attended a meditation class, organized CBT (cognitive behavioural therapy), and made a healthy meal plan.  All this time I doubted something. This was not depression and anxiety. It happened over night. How could the change have been so drastic and quick?

I was diagnosed with postnatal anxiety and depression in a corridor of a GPs office, with no medical checks or examination. Once this had been said it could not be undone. It was a barrier that stopped anyone actively listening to ME!

Then it got worse. It felt like my life was gone I was constantly looking at my own thoughts, trapped in my own head. I couldn’t be awake, it was like torture yet I couldn’t sleep – which left me considering how I could end it all.

I would get hot and sweaty, pacing, pacing, pacing, all day and night. Over the next week these episodes reached peaks. I ran into the road in my pyjamas into oncoming traffic, banged my head repeatedly against the wall and floor, and scratched my arms. I just wanted to hurt myself so I would think about the pain and not my own thoughts. My family watched. They watched and watched 24 hours a day, scared of what I might do. I went to the doctors again, a mess. I screamed crying, like I never have before from the pit of my stomach, I couldn’t live. I couldn’t go on. What was happening to me?

The doctor referred me immediately to the psychiatric crisis team at the hospital. I filled in a form, any history of anxiety? No. Any history of abuse? No. Any worries before this? No. I had by now read everything I could (from reliable sources) about postnatal anxiety. I did not fit the bill. There were so many symptoms missing and so many more that weren’t described. I kept exclaiming with such commitment ‘this happened over night’. The change was incomprehensible and so sudden. I was given Diazepam, told to continue with the Sertraline and to stop breastfeeding with a view to putting me on Promazine – an anti-psychotic, in a week. I had never taken any drugs before but at this moment I would have done anything to feel normal. They took my bloods and did an ECG, as these were required before starting the course of recommended medication.

I still didn’t know what was happening to me. The next week was bad but I got through it, each long hour of the day. I stopped breastfeeding in five days with the support of my mum and dad. We felt alone. I managed a CBT session and spoke to my health visitor. I continued to express the feeling that no one understood, that something was wrong. Everyone involved said ‘that’s part of the condition’ (postnatal depression and anxiety). I was begging them all to listen, begging.

‘I have seen so many women like this before,’ they said. I knew the diagnosis was wrong and was very interested to see my blood results (even though these had been taken to put me on a drug, not to investigate what was happening to me). I arrived at the hospital that Friday. It was deemed I did not need Promazine and that I should increase my dose of Sertraline. I asked for my bloods, they weren’t there. Why? There was no explanation. I became determined. I became angry (that’s part of the condition!?)

I wanted to see my blood results. I was then told I could get the results from my doctors and so there I went. I battled there too. I was scared for my own life.  Later that day I was seen by a doctor and told my thyroid was overactive and the presence of Thyroid Stimulating Hormone (TSH) was non- existent.

Being unable to switch off my own thoughts was torture.

The relief was immeasurable, a diagnosis? Some answers at least. I was told to call the hospital to arrange an endocrinologist appointment in ten days and prescribed beta-blockers in the meantime. The symptoms persisted, with as much vigour as they ever had before. I battled some more. I made a doctor appointment and begged for the referral to be made and marked urgent. It was. I made an appointment to see an endocrinologist on the 6th of November 2017.  All this time there was a feeling of doubt from the professionals, of doubt that an overactive thyroid would present in such a way. I was, to them, clearly suffering depression and anxiety alongside this. This made me doubt myself, made me fear for my own sanity.

Things got worse. One afternoon my partner had to restrain me from hitting my own head with such force. When he held my hands I banged and banged my head on the floor screaming ‘make it stop, please make it stop.’ My parents came immediately – my own emergency services team – and took me to A and E (emergency department). There were no more options. Here, one woman listened. She really listened and spoke to me like an equal, like I knew something about what was happening to my own body. I was placed under the care of a mental health home crisis team and promised that all of the services would liaise in order to establish and treat my condition. I just needed to make it to my Endocrinologist appointment. This was my goal, the only thing I could think about and what I lived for. This was the emergency.

I had an overactive thyroid so again I read, when I could, and this is when I found out about postpartum thyroditis and that having an over-active thyroid could cause mental disturbances, mood swings and inappropriate anxiety. I also found out that after the hyper (overactive phase) your thyroid could return to normal or you could become hypo (underactive) and present with another set of symptoms. I went to the endocrinologist armed with questions, knowledge and my advocate, my Mum. During this time I had started to feel a little better. It couldn’t be the anti-anxiety drugs because I hadn’t upped my dose of Sertraline as advised.

In the classic form of postpartum thyroiditis, there is a transient phase of hyperthyroidism (over-active thyroid), at 6-12 weeks postpartum followed by hypothyroidism(under-active thyroid).

I arrived! 45 minutes early, ready to share my symptoms and listen to the expert. The appointment lasted less than ten minutes. I was explicitly told that my symptoms were for the psychiatrist to handle. He had not seen these symptoms with thyroid issues before (denied again by the expert – it must be me!?).  A few brief tests and a diagnosis of Graves’ disease (an autoimmune disease that causes an overactive thyroid) with the instruction to take Carbimazole immediately and for 18 months. He would see me again in 3 months. I again questioned and asked how he could be sure my thyroid levels wouldn’t drop as with postpartum thyroditis. I had after all been feeling a little better and the last blood test had been carried out weeks ago. He was certain, he said the fact I had given birth was not relevant. I was told I needed to take the drugs immediately otherwise my body would start to attack itself and I would get heart failure and this would not be treatable – have a nice day now, bye!

Not all women with postpartum thyroiditis experience this shift from hyperthyroid to hypothyroid. Some experience hyperthyroid symptoms throughout and others hypothyroidism.

We were out…done…I should have been happy? Resolved? Treatment? I wasn’t. Something wasn’t right. People still weren’t listening. I was made to feel arrogant for questioning the expert. The following day, Tuesday 7th November, I made an appointment at the doctor’s office to get my bloods tested – I battled to get the results quickly. The doctor would call the next day.

THE RESULTS WERE NORMAL. As of that moment my thyroid function was normal. I cannot explain to you the elation I felt. I cried with relief and happiness. Not only were the bloods normal, but I was right to push and battle and keep going. I felt vindicated, empowered and like I finally, after five long hard weeks, had information about what was happening to me – it was likely postpartum thyroiditis.

Two weeks later and a visit to the doctor showed that my thyroid function had now swung to underactive. These swings are common with postpartum thyroiditis. The doctor confidently diagnosed postpartum thyroiditis and instructed me to take thyroxine in order to replace the hormone my body should have been making.

I was so tired every inch of my body ached. Repetitive, depressive and intrusive thoughts defined my day.

I then waited until the 18th of December to see an endocrinologist. Two months after I had initially begun to feel unwell. At this appointment I was told that my thyroid function was normal but that it was not possible to tell if this was due to my thyroid function returning to normal or because I was taking thyroxine. I agreed with the endocronologist to stop taking thyroxine  – adding a bonus six weeks to my journey to begin recovery. On the 4th of February 2018 I had hopefully begun to get better, more than four months since I became unwell.

Most cases of postpartum thyroiditis resolve in 6-9 months, but for others the thyroid abnormality is permanent.

Looking back I described four symptoms of an overactive thyroid at my six-week postnatal check. When I asked the doctor about the notes that had been made at this appointment she simply read ‘Jenny felt tired’. Of course I felt tired, I had a six-week-old baby at home!? What I had actually said was ‘I am awake all night, even though my baby is asleep for six hours and had been doing so since three weeks old (I know how lucky we are!)’ and as a result of this I was tired. I left that appointment feeling and stating that it was a box ticking exercise, like I wasn’t listened to – this is what I feel angry about. Not the fact that it was missed but the way that it was missed. If a blood test had been taken as a first port of call at my six-week postnatal check, even later on when I presented with sleeplessness I could have continued breastfeeding, I could have perhaps avoided the extreme symptoms and I could certainly have saved UK’s National Health Service (NHS) thousands of dollars.

Thyroid testing should be part of every woman’s six-week postnatal check, especially those suspected of postpartum depression and/or anxiety.

Postpartum thyroiditis is something that happens to up to 10% of women after birth yet, from my experience, no one seems to know about or understand it. The hyper phase often goes undetected – I unfortunately presented with extreme and rare symptoms. Then the hypo phase is often where it is detected, tiredness, achy muscles, and depression – perhaps there are many more cases misdiagnosed as postnatal depression, dismissed and not understood.

The hyperthyroid (over-active) phase may result in symptoms such as insomnia, nervousness, anxiety, sweating, rapid heartbeat, palpitations, weight loss, diarrhea, and fatigue.

I write this article not to complain or grumble, but to raise awareness. To be a silent friend so that other women can read and feel someone understands. During my harder days, I felt so alone. I found two accounts on the Internet that described almost exactly what I was going through and it gave me hope to keep battling for help. The profession was too quick to put me in a box. So quickly was I diagnosed with postnatal anxiety and depression, so quickly were people saying ‘we’ve seen this before’.  Once this had been said it could not be undone – it was concrete, set in stone. I was catapulted into the system like a pinball in a machine and slowly a crisis was created. A crisis that needed responding to.

The hypothyroid (under-active) phase may come with symptoms including fatigue, unexplained weight gain, hair loss, constipation, dry skin, high cholesterol, swelling, feeling cold all the time, chronic pain, and depression.

If people had only listened, if blood tests had been done, I could have continued to breastfeed with postpartum thyroiditis. If the thyroid problem had been viewed as the emergency and not the mental health symptoms, I would not have lost months of time with my beautiful daughter. This is what I want for other women, for them to be informed and understood, for them to be listened to and acknowledged. We know being a mum is an incredibly big role change, we have done it – this does not mean anxiety and depression follows without question. We are strong, we gave birth, and we know our own bodies better than anyone.

I am left with anxiety and depression, very aware of my own thoughts and constantly wondering how my thyroid is functioning.

I am currently in the ‘normal’ thyroid range in the UK and being told my symptoms are mental health related…again.

The mental health workers told me to stop reading about my condition – it would only feed my anxiety. Thank goodness that I didn’t listen.  I am not sure where I would be now.

My battle with postpartum thyroiditis

About Jenny Allen

I am a 34 year old first time mum and a passionate Reception Teacher. I spend my time with family and friends and have a ‘grab every second with both hands’ attitude to life. I live in Manchester, UK and love travel, learning, music and dance. I feel exceptionally proud to be a woman.

Sources:

Thyroiditis. NHS UK. Retrieved from: https://www.nhs.uk/conditions/thyroiditis/

Guidelines on the management of thyroid disease in pregnancy. Norfolk and Norwich University Hospitals NHS. Retrieved from: www.nnuh.nhs.uk/publication/download/thyroid-disease-in-pregnancy-ao38v3/

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About Dana Trentini

I founded Hypothyroid Mom October 2012 in memory of the unborn baby I lost to hypothyroidism. Hypothyroid Mom is for informational purposes only and should not be considered a substitute for consulting your physician regarding medical advice pertaining to your health. Hypothyroid Mom includes affiliate links to favorite resources including the Amazon Services LLC Associates Program. Connect with me on Google+

Comments

  1. Does it ever end? I live in an area with no MD’s who are covered by my insurance who are awake and aware about best thyroid treatment. I worked with a nurse practitioner who was covered and knew about thyroid best treatments. She dropped Medicare, now new primary is not happy with my T3/T4 treatment/labs with .02 TSH. So here i go AGAIN. Thank you for your wonderful work here, we can help others with what we have learned through so much pain. I am 71, had low thyroid likely my whole life, lots of bronchitis as a babe, tonsils out at 3, all the antibiotics to destroy my microbiome, so tired always but after first born exhausted. Now dentists have fired me for not taking oral antibiotics because I have 5 joint replacements, but long ago enough to not take oral antibiotics and I can get a shot if needed. At age 20 Doc said I was anemic, now I know low thyroid and anemia go hand in hand, they need each other. Could not take ‘iron’ they prescribed. Now new labs show my iron sat% etc have levels dropping for a year, slowly. I take lithium orotate to help absorb B12 due to genetic anomalies and saw it helped a lot before, tracked with labs for proof. Genetics interfere with iron metabolism. Wish me luck, I am not one of the fortunate who recovered. I was 40 before diagnosed/treated and I understand that may mean thyroid will not work properly in cells. Also very complex genetics and heavy metal poisoning. After 25 years of disability I do not have funds to work with helpful medical folks. At least I know the TRUTH now. On to the battle. Doc’s nurse said she is not happy with my treatment/labs, it is not NORMAL!!! I told her there is very little that is normal about me. I am gluten free to help with autoimmune. I keep tsh at 1.0 or below to suppress Hashi’s, T3 at top 1quarter of reference range, FREE T4 (REF) 0.89 – 1.76 ng/dL at 1.16(not sure what is best, must research, did not see at your site). See Hematologist for iron labs, and she does not know ‘why or what to do naturally’. So I take liver caps and lithium orotate and good B12 sublingual and every mineral/vitamin/fish oil. etc. But I am very ill likely due to a toxed out body in a poor detoxification/methylation/glucoronidation detoxifier world. I applaud your work, especially for young Mom’s, I spent most of my life being embarrassed for not having enough energy or brain power, SO HARD WITH NEW BABE! tried harder and harder, got more and more depressed, ended up a single Mom of two at 27 and then more work piled on plus a job. Faked it alot. Now so much is out there, I read every book I could, Janie Bowthorpe helped and I would use natural thyroid (WPThroid) but not in my budget now. Ridha Arem the best Thyroid MD information.. who knew that bipolar and other mental health issues are likely caused by low thyroid/high thyroid fluxuations. Lost my dear son to Bipolar 13 years ago. His TSH was 5.5 after he was out of touch, docs did nothing but gave him meds for bipolar he could not tolerate, likely had my genetic challenges, I cannot take many meds. All the years. times I sought counseling for us, to no avail, no diagnosis. Genetics, all of the females in my family/maternal side have Hashi’s. And cleaning up our lifestyles plus detoxifying can probably turn low thyroid around. My genetics are too complex to try metal detox without Supurb genetic guidance. Blessings to you and all who work diligently to find their way to health in our medical system, looking for ‘outside the box docs’.

    • Rhoda chaple says:

      I am really happy with my primary doc. But they really don’t seem to want to get into things they aren’t, into. Oh they will refer. I have parathyroid problems. Endo surgeon removed one of 4 nodual. My grandmother raised me. She had been a nurse. The firs thing I remember is the nails. The first time I saw them I knew what is was. Ribbed, peeling lost a toenail already. My Dr ask me if I dropped something on them the thumbs are worse. Well this is getting lengthy. No one seem to care. All my life it’s been autoemune problem, 2 knee replacement, arthritis, osteopina.my name is Rhoda

  2. Dear Dana, I can’t thank you enough for all the compassion and understanding I have received from your blog, Thank you, Jenny for sharing about postpartum thyroiditis. Your article brought back a flood of memories for me. I had undiagnosed postpartum thyroiditis 30 years ago after the birth of my third child. Six weeks after his birth, I had anxiety, was hot and nervous and could not calm down. I went a week without sleeping.
    I was put on antidepressants and sleep medication. I knew something more was wrong??
    I was sent to a psychiatrist who said, I think this is related to your thyroid. Thank God!
    At that time, postpartum thyroiditis was not a term I had ever heard. I never met anyone who experienced what I had. The endocrinologist decided to remove a nodule and did a partial thyroidectomy. The lab results said I had Hashimoto’s. A second surgery, 15 years later to remove the rest of my thyroid accidentally removed my parathyroid glands.

    I am so thankful to both of you for sharing your experiences and hope this will help others who suffer with this thyroid condition.

    • Rhoda chaple says:

      I’m thinking of getting them to take out the other 3 parathyroids. What do u think. I’m 75. I still have things to do. My overall is getting worse.
      No bucket list, just want to clean my house. Thanks for listening

  3. Hei

    This is my story. I gave birth in July I started to lose the weight rapidly. I started to feel exhausted and other strange symptoms like my breathing was strange and my throat didn’t feel the same. I couldn’t sleep. I love my GP. She run hormones test each time I told her but it was until nearly 5 months PP when the blood test showed I had over active thyroid. My breastfeeding supply was just a bit affected. I didn’t have antibodies. The doctor did two blood test to see if it was pp thyroiditis or graves. The first one was correct. My levels started to shows better number I went a bit down and then back to normal. Now we are in March my breathing is OK but my throat feels dry like sore throat that comes a go. Is this a consequence of having pp thyroid issues? Can you be normal and then goes under active? I will see my doctor again in 2 weeks for new bloodtest and maybe and ultrasound. I am still breastfeeding. I would like to have a second baby but I am so scared that I decided not to. I must also said that I did have PPD which was also linked to PP thyroiditis. Thanks

  4. Thank you for reading and sharing your stories. Lili, I did not have this symptom but it is my understanding that everyone presents so differently and uniquley. You can have normal thyroid function and then go underactive. this is what happened to me. I was then told function was ‘normal’ but was still getting symptoms. I have seen an endocrinologist that seems to understand much better he said that the symptoms don’t always follow the numbers and that it takes the body time to recover- almost catch up. I am in the normal range in the UK. but in the rest of the world would be outside of this range – initially only tsh was used and an indicator but my latest diagnosis looked at more detail and showed I was still in a ‘mild hypothyroid state’ I was restarted on thyroxine until my daughters first bday and they will tell me to come off and test again.

    • Thanks for answering. I am lucky to have My thyroid normal values before I got PP thyroiditis. So, In March I took a new bloodtest and it shows that I am in the Standard normal range but not in My normal ranges. My T4 should be between 12 – 14 but my last lab says 10.7 T3 shall be 3.2-3.3 but I am in 4.2 and my THS shall be around 1.5-2 but it is around 2.5. I will call my doctor. I feel it in my throat and it’s bothering me. I can not sleep very well. When you write that it takes between 6-9 moms to resolve PP thyroiditis, is it just the underactive phase, or both phases or any phase? Thankkkkkkkk you

  5. Dear Jenny,
    Thank you so much for sharing your story. I could relate to so many aspects of your story, I cried with relief when reading.

    I have been putting off going to the doctor’s with my symptoms for fear of being judged as being depressed or mentally unstable. I did however pluck up the courage this week. I saw a very understanding GP, she mentioned thryoiditis and she has order some blood tests. Hence me scouring the net for information.

    I gave birth to a beautiful, healthy baby girl in December. She is my fourth child and I have suffered with PP bleeding in the past. Sure enough this time was no exception. I had endometriosis following retained placental products. I had put the tiredness down to feeling unwell at first (little one was sleeping through and I had stopped breastfeeding due to antibiotics). I could not switch off when I had the opportunity to sleep. I just thought maybe I’d got used to not sleeping over the years.

    I was also experiencing aches in my joints and excessive hair loss. I mentioned these symptoms to my GP at my postpartum check and he just said it was normal after having a baby. When I explained that I didn’t have these symptoms after my other pregnancies he told me ‘ Well you’re not getting any younger you know .’

    I have been a primary teacher for many years and am well versed in keeping my cool in challenging situations, but some days I cannot cope with the simplest of problems. Other days I feel emotionally switched off or numb- disinterest in everything. I don’t like feeling like this. I am a caring person and feel pleasure in caring for people.

    I’m so pleased I came across your post. I’m now convinced that the GP might be on the right track, but will have to wait for the blood tests to be sure. Thank you again for your courage in speaking out. It has truly helped.

    Kerry

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