I’m finding it gradually harder to write about my experience with Postpartum Thyroiditis, namely because I am no longer postpartum. It’s been over twenty-four months since I gave birth to my daughter, and my health has still not fully recovered. The weight of the information in my head, my exhaustion from my ever-changing health journey, and the immense amount of research and learning I have had to do is hard to translate into useful words.
I have previously written about my difficult experience when three months following the birth of my daughter I became ill with Postpartum Thyroiditis. This is a condition where your thyroid becomes overactive and then underactive in the space of a few months and, if you’re lucky, returns to normal by twelve months postpartum (or so the textbook says.) As my thyroid exploded up and then down, there was no one in the medical profession available to manage my condition, or even to help me to manage my condition.
As my doctor said when I saw him at one appointment, ‘you diagnosed yourself really.’
In December 2018, a year and a half postpartum, I finally felt physically and mentally well and hopeful that my battle with Postpartum Thyroiditis was behind me. The last remnants of symptoms had cleared up, my hair had stopped falling out, the ringing in my ears had ceased and my sex drive had returned. Christmas came, I had relaxed drinks with family and took a deep breath; I finally had some space to compute the last year or so and hopefully move forward. Relief washed over me. I accepted half a term of work as a supply teacher, for four days a week, at a kind and friendly local school. I enjoyed working, thinking and communicating with adults and I looked forward to quality time with my daughter for the remainder of the week. I was happy.
For the first time in 15 months, I welcomed a feeling of health that I had forgotten existed.
Towards the end of January 2019, I noticed a return of recognisable symptoms, I was exhausted and ached all over. I made a number of predictable excuses; ‘It’s because you’re working – it’s hard,’ ‘You have a cold, you’re bound to feel tired’ and the classic ‘It’s your period.’ I developed an excessive thirst and constant dry mouth, a ringing in my ears crept in over the days, my hair started falling out by the handful, and small tasks became a struggle. I went to my doctor who carried out a thyroid function test – TSH (Thyroid Stimulating Hormone), the results of which were within normal range. ‘I can’t see that there’s anything wrong here,’ said the doctor and no further investigation was undertaken. Here we go again…
A recognisable state
Following this appointment and the decision to take no further action, my symptoms intensified. I had heart palpitations, was unable to sleep for hours on end, became hot, sweaty, erratic and jittery. I felt very strange, as though my eyes weren’t communicating with my brain, like I was detached from reality and I was also losing weight very quickly. Though not as intense as before, I recognised these symptoms all too well. I had experienced them during the overactive phase of Postpartum Thyroiditis.
By March I found myself unable to work and dramatically reduced my expectations to ‘just getting through the day.’
During this time, every now and again I would experience what I have come to describe as ‘mood seizures.’ With no reasonable relation to context, I would suddenly feel so angry and full of hatred for myself, for being alive, and this bubbling frustration would overwhelm me. So much so that I would end up letting it all out by screaming and hitting myself. There is nothing about these ‘mood seizures’ that I can describe as emotion, they felt deeply physical and were always pre-empted by a flare-up of other symptoms.
Blindsided by ‘mental health’
Though the symptoms related to mood were only a small (but very serious) part of my overall health they became a point of fixation for those I turned to for help. Since the initial and incorrect diagnosis of ‘postnatal anxiety and depression,’ before Postpartum Thyroiditis had been determined, the medical professionals continued to be blindsided by the label of ‘mental health.’ This rendered them unable to hear what I knew about my own body and prevented investigation into any other avenues. Honestly speaking, this has been the biggest battle of all.
Searching for answers
Once again in desperation, I returned to another familiar state – scrabbling, alone, for answers. Did I have an iron or vitamin B12 deficiency? Had I taken too much magnesium supplement? Irrational to me now, but no one else was problem-solving on my behalf and I knew there was something fundamentally wrong with my body, so I felt compelled to dig for answers myself. I visited the doctor several more times over the next couple of months, my TSH was still (just) in range and had moved towards the overactive end of the scale. Given that I had experienced my symptoms before and my blood results were indicating a change, I felt certain that my thyroid function was not well.
I was explicitly told that it could not be my thyroid, that I was fixating on numbers and that It might be helpful to see a counsellor – ‘you have been through a stressful time after all.’ (At their own making, I had.) I questioned myself briefly but quickly returned to my own sense of self and my confidence that I knew there was something physically wrong and so did those around me.
I can even recall, one evening very calmly turning to my partner and saying: ‘There is something fundamentally wrong with the way in which my body is functioning, if it’s more sinister than we hope, I need you to tell people I asked for help, I need you to raise awareness.’
Beta-blockers had been prescribed to me before for the overactive phase of Postpartum Thyroiditis. My symptoms continued to intensify and as they were so familiar I requested beta-blockers in a hope that they would offer some relief. As my thyroid results were changed but ‘normal’ and further thyroid investigation was continually denied I had little choice but to request this treatment under the guise of anxiety. I would pay for this at a later date, as my records were already white-washed with the words ‘mental health,’ but I was desperate and my priority was my immediate health.
I started to develop painful spots on my hands which ached with coldness, a dizzy light-headed feeling and my eyes pulsed feeling like they had bits of grit or glass stuck in them, each new symptom was treated as a new problem to be solved in isolation. This is when I used some of my personal savings to see a private GP. I prepped for the meeting, I made notes and strategised I even chose a seemingly sensible outfit to wear. In order to paint a clear picture I provided the fullest of detail of my medical history, including that I was currently experiencing vaginal dryness and had no sex drive. All my greatest intimacies were laid bare at a doctor’s desk once again.
The response was numbing. Just as my NHS doctor had, I was instructed to carry on taking iron supplements and that I could also buy some KY Jelly from Boots, ‘to help with more comfortable intercourse’
I reflected on this consultation and became gradually more frustrated that my care plan had been reduced to (of all things) lube! As the Doctor directed me toward my purchase I felt belittled, unheard and assumed intellectually inferior. I began to wonder if I had even uttered the words, ‘I am too unwell to work,’ as well as all my other symptoms, including that ‘I have no sex drive.’ Fucking lube! Listening, once again was clearly absent.
The symptoms ebbed and flowed, changed and cycled; on some days I could manage and on others, I could not. I noticed over the months a pain in my neck, a dull ache when I talked, that sometimes stopped me in my tracks when reading a story to my daughter. A tickly cough came, with no other symptoms of a cold and my voice would crack and break. The pain sometimes migrated to my ear and was always present.
Around this time I strongly suspected that my thyroid was overactive but my requests had become tiresome and my TSH was no longer monitored.
Life without a diagnosis
Around the same time, I began to have serious worries; I was not working and we had bills pay. As a consequence of Postpartum Thyroiditis I was not in permanent employment and without a diagnosis I felt alone and concerned about my future health. After nearly two years of being right about my own body, I still felt unheard, dismissed and was desperate for someone to listen.
My mental health
I recognised the pressure the situation was putting on my mental health so I self-referred to the local NHS mental health service who expressed a belief that their support wasn’t appropriate for my needs. This team referred me to the hospital mental health team, who supported those with long-term illness. My referral was promptly declined. Without a diagnosis, it seemed there wasn’t any mental health support available to me. I was directed to my GP to begin the loop again. I tried to make light of this irony after being so quickly and consistently labelled with mental health problems for the past eighteen months.
I sought help for an understandable anxiety manifested by a difficult situation, especially given that I hadn’t yet had the space to compute the mess that was my experience of Postpartum Thyroiditis. This aspect of my mental health was very different to those ‘mood seizures’ I experienced (though I am sure they exacerbated one another).
That said, the ‘mood seizures’ very clearly and demonstrably accompanied a multitude of other symptoms that were exactly like those I had experienced with an overactive thyroid. At no other point in my life have I experienced such violent and overwhelming feelings of distress and panic. But that didn’t seem to help doctors with a diagnosis. So many times on this journey I have had to repeat myself saying ‘the words I use to describe these mood swings sound like anxiety, but these are the only words I have, to hand, to express what they feel like, but what I know and feel is that I can almost pull the two apart in my head.’ As the patient, surely taking my word for it should count for something?
Those around me felt the pressure, my partner was working full-time, looking after me, the house and a two-year-old. Through all this, he continued to reassure me – ‘this is your thyroid, this is not you.’ I argued with my mum, who wanted nothing but to solve it for me. She battled beside me. My friendships suffered, the detail had become so much that I just couldn’t keep them all in the loop.
I have nothing but gratitude for my family’s belief in me, several doctors and endocrinologists had told me there was nothing wrong, but they knew me and also had the same instincts I did about my health.’
At this stage, I felt like I had fallen down every crack in the system and I had walked down every available avenue, but there were no answers. While feeling so exhausted and discouraged, I still could not accept being so unwell without a confirmed diagnosis as my reality, until I knew someone had really listened and done their best on my behalf.
A visit to the endocrinologist
Over the next couple of months, my symptoms settled a little but they didn’t go away. I returned to work for a day or two a week and tried to listen to my body as much as I could so I could manage how I felt and what I needed. After doing some more research we then committed to seeing a fourth endocrinologist. Attending appointments no longer made me feel hopeful and confident that someone could help. My previous experience dictated that I was instinctively full of nerves and scepticism, which was disheartening but ultimately necessary to manage our expectations and avoid disappointment.
A suspected diagnosis
My appointment with the endocrinologist arrived. She was caring, listened attentively and with confidence and reassurance provided me with a suspected diagnosis of Graves and Thyroid Eye Disease, which she seemed certain would be confirmed by further scans and blood tests (thyroid stimulating hormone receptor antibodies (TRAb)).
Findings in clinic have suggested a diffuse goitre and evidence of thyroid eye disease’
It was suggested that this pre-existing (unknown) and underlying condition is why my presentation of Postpartum Thyroiditis had been so strong. She also expressed that this experience must have been ‘traumatic’ for me, an affirmation that at last acknowledged the enormity of what I had been through. It was thought that I had returned to work too soon and I was instructed to manage my stress levels in order to support my body to recover. We even discussed the importance of nutrition, something that had been so quickly dismissed on discovery of previous iron and vitamin D deficiencies.
Symptom fluctuation has always coincided with a dysthyroid state.’
This endocrinologist endorsed ordering private blood tests for when acute symptoms were experienced. This was something I had done once or twice but was then used as ‘evidence’ to compound my mental health problems.
Knowing that there was a real possible medical explanation for the ongoing symptoms was critical. If the diagnosis was correct and I continued to have fluctuations in symptoms a treatment plan could be devised. At last, I felt as though I was legitimately under someone’s care.
Following this appointment, I felt an incredible sense of relief. Finally, someone was willing to listen and treat me as an individual. A body, that might not always fit the textbook, but as I had always maintained a body that was actually giving lots of signs of being really unwell. I made the relevant appointments with my GP and waited, with a sense of confidence for the test results. This time, I felt sure that even if the diagnosis was not confirmed there would be someone there to help…
As part of this journey, I am sometimes troubled by ‘what ifs?’ ‘What if I am poorly and never get a diagnosis?’ ‘What if the endocrinologist dismisses’ my concerns?’ ‘What if my partner stops believing in me?’ ‘What if mum and dad move away?’ ‘what if we can’t pay for the help we need?’ I can usually reassure myself and put these worries to bed, because that, in the most part, is all they are. I write my experiences down because what if, these worries are other people’s reality?
Click the links to read parts one, three, four, five and six (the end) of my nearly three-year-long battle.
7 thoughts on “Part 2 of My On-going Battle with Postpartum Thyroiditis, Suspected Graves and Thyroid Eye Disease: Nearly two years after giving birth and I continued the battle to be heard.”
I have been reading your blog and finding comfort in your words, as I am also experiencing PPT. This is occurring after my second pregnancy and, although I had a mild version of PPT after my first, this experience has been much worse. I am currently 6 mo PP and my levels have now just recently “normalized” from the hyper stage, (within they last week), although I still feel awful- tired, gritty/sore eyes, weak arms and legs, pins and needles in my limbs, swollen throat , brain fog. My endocrinologist says it can’t be my thyroid that’s making me feel so bad anymore since my levels are now in normal range. I tested negative for Graves antibodies, although I’m positive for TPO and TgAb. Have you gotten results back about Graves? Are you on treatment now? Did you make any lifestyle changes like special diets or supplementation to get you to recover the first time? Thanks so much! I hope you are on the path to recovery.
Hi, thank you for reading and I am glad that you have found some comfort in my words – this is why I wanted to share. I didn’t feel well for the weeks I was ‘normal’ after the hyper phase and it took a long time for me to feel well after my bloods came back normal following the hypo phase. I am, of course, not medically trained but I tried to reassure myself that it may take some time after having given birth, being overactive and then underactive….these are all things that surely have a massive impact on the body and happened in such a short amount of time. One endocrinologist did explain to me that symtpoms don’t always follow blood work and that it may take some time for the body to ‘catch-up.’ Many just treated me like I had had a cold and as you have been told said it couldn’t be anything to do with my thyroid. I always knew it was – I felt so physically unwell.
So… I will, unfortunately be writing part 3 soon. My bloods showed normal and the scan showed a diffuse goitre with nodules!? So Graves was not confirmed, however I don’t yet feel that I have any answers as per diffuse goiter. My symptoms have all but settled this last month or two…and I am reassuring myself that, as per the first time, it just takes a few months for my body to entirely settle down after an assult on the system – as I wrote about with what happened earlier this year. I went back to work too soon atfer pptum thyroiditis and put too much stress on my system (the textbook 12 months was more like 18 for me and I should have given myself a little longer.) I have another endocrinologist appointment soon where I will ask some questions, as I was told that there was a presence of thyroid eye disease…
When I had thyroiditis there was a presence of TPO antibodies. These are now normal and quite low. TRAB antibodies have more recently not been detected.
I have made some diet and lifestyle changes. I went to see a nutritionist to rectify iron and Vit D deficiencies that were not seen to by the GP. She did me a whole plan which included eating gluten free, using natural products (shampoos etc) eating low carb, lots of grains, proteins, good fats – avocado, and 7/8 veg a day to name a few of the things. I did follow this plan and remain on it. I feel like it helped but I also know that this helped psychologically in that I was doing something to help myself at a time I felt so out of control. I dont think it ‘cured’ me but I am certain that it helped – stands to reason that being healthy gives your body the help it needs to recover. What I will say is don’t put pressure on yourself to be in charge of getting yourself well. If you had a broken leg you would wait for it to mend – that is also the case with pptum Thyroiditis.
I hope this helps and you’re little ones are ok. Best wishes for a sooner rather than later recovery and thanks for reaching out. Keep faith in the knowledge that only you know your own body!
Hi, after reading this I feel somewhat reassured.
I have had trouble the last three month with all of the symptoms you have had plus a few thrown in for good measure! I have had every blood test under the sun. But have an antibodies and autoimmune blood tests to come ( antibodies as requested by me ) my TSH levels were normal but can’t help thinking that reading this post sounds all too familiar for me! I experienced these same symptoms for about a year after my first child but put it down to being a new mum this time with my second I know something isn’t quite right! I’m starting to feel better three months in but not 100% I’m hoping this is my issue and not MS which symptoms are very similar.
I did also experience symptoms again soon after I became pregnant with my second but only for a month or so, do you know if this could be related to ppthryoiditis??
Thanks for your post was good to read!
Thank you for reading and getting in touch. Your comments are also a reassurance for me. I am sorry you’ve had trouble with your symptoms and have had to be proactive in accessing tests. I have often been down rabbit holes, problem solving and thinking it could be other things such as MS but my symptoms are recognisable from a previously diagnosed thyroid problem.
I will write up part 3 soon but my scan results showed a diffuse goiter with the report saying ‘acute thyroiditis.’ My bloods still read ‘normal.’ My symptoms have all but cleared up now but I am always mindful and I will be seeing another specialist to ask further questions like – ‘when should I expect my goiter to return to normal?’ etc as I am now 28 months after the birth of my daughter…
As per your question in regard to whether the symptoms you experienced after you became pregnant could be related to pptum thyroiditis I really don’t know as I have not experienced symptoms during pregnancy. What I do feel from my experience is that there isn’t a great depth of understanding around it – the textbook is very rigid!
I do hope you find some resolve and feel better soon – I understand it can be a distressing place to be.
Hey! I had two baby’s quickly and noticed symptoms of drastic weight loss even though I was eating enough to sustain or gain.(usual weight 9.4 weight at first apt 8st 2) I felt incredible mood swings and thoughts and really thought I was loosing my mind. My hair was falling out and I wasn’t growing hair on my body the same. My period would last 3 days and i feel as though I’m in labour with leg pain when they are here. The palpitations would occur when I was sitting or just going off to sleep, I would feel panicked about nothing and get myself in a state and find it so hard to calm down. Iv had my thyroid checked 3x and it was borderline twice and normal, I scored a 7 on my iron bloods so I was prescribed double dose of ferritin for 6 months , I took that with a multivitamin and the palpitations subsided, my iron stores were back up. They also tested me for celiacs and diabetes and vitamin D and b, 3 months later the all of the symptoms are back! I found your blog and take great comfort in seeing I’m not alone! I haven’t felt myself for a long time and it’s horrible. My last appointment with my doctor she said maybe the cause is you had two kids quickly and on the go all of the time, but I do what every mother does and it didn’t explain the weight loss or the cause of anemia(as my periods were light and I did not loose a lot of blood during labour) she then said it was a mystery. I am just wondering what exactly is the treatment?
Thanks for reading and I am sorry to read about the trouble you have had. I have not been checking in as much with the blog lately as I was waiting and have now had thyroid surgery. I do hope you’ve found the support that you need and that things have become a little easier
Thank you for reading and commenting – I am really pleased that it offers some level of comfort and support and I am so sorry you haven’t felt yourself for some time. I am finding new motherhood and having a young family is an all too easy forum for dismissal but the one thing I did learn from carrying a baby and giving birth, is that I KNOW my body. I have deep confidence in this.