Women CAN have it all. But it’s really, REALLY hard.

This photo represents having it all – a strong family, a good living, and enough material wealth. But it also comes with a lot of stress. Luckily, we are an extremely strong team.

Why am I doing all of this? I mean, all the research, all the tests (that I was subsequently to do), all the reading, all the time spent trying to figure out something that was so new to me. Why couldn’t I just accept the medication and be on my merry way? Because as I have learnt, there isn’t a merry way. Synthetically restoring the thyroid function isn’t the end of the story. For us anyway, it was only the start. If it had happened to me, would I have just accepted the medication and tried to carry on as normal? Probably not. I have always tried to get the root cause of any health complaint I’ve had myself. But why wouldn’t I be determined to discover the root cause when it comes to my 10-year-old daughter? But I understand my determination could end in disappointment. The fact is, Seren’s thyroid is already substantially destroyed, and that one specific cause may never be determined. But as I mention later, there is such limited information out there on children with Hashimoto’s disease. So perhaps this blog will end up helping other parents. But I have learnt to lower my expectations. I know that some may feel I’m wasting my time, that it’s silly to think autoimmune disease is anything other than a genetic problem, that the environment has nothing to do with it. But I would argue that it doesn’t take a lot of digging to find the research that suggests otherwise. That the current mode of treatment is outdated and that we need to look beyond ‘fixing’ health issues with a pill. I’ve said before and I’ll say it again, I can never be grateful enough that a synthetic hormone exists for Seren’s condition and it’s something I think about every day. But it’s not enough. As Kharrazian (2010) noted, people once were unaccepting of the idea that germs caused us harm. Just because they’re not visible, it doesn’t mean they don’t exist. The same argument applies to toxins in the modern environment and the possibility of harm to human health. Anyway, I listened to a podcast recently where Derren Brown was being interviewed and he advised the philosophy of ‘high intention, low expectation’ when it comes to any kind of endeavour. So, that’s where I am. I will put everything into researching this problem and communicating the findings and of course, our story, but my expectations will remain low in terms of how much people want to draw from it.

It was now April 2022 and after two months of treatment, Seren’s thyroid levels had returned to normal. But her health was continuing to deteriorate. She was experiencing severe nausea that was cyclical in nature, that is, always worse at night. She continued to experience what appeared to be acid reflux where she belched so often it was difficult to believe that it was real. Eventually she would fall asleep and wake up in normal health only for the problem to repeat itself by the time the evening arrived. But then another problem appeared that really freaked me out. We were walking the 15-minute journey to school when I noticed that her legs appeared to be buckling. And Seren, the private and reserved individual she is, and who often hid her symptoms from people, sat down on the pavement declaring she could walk no further. She said her legs were simply too tired. I was utterly horrified. I knew she should have the energy to walk because her appetite had increased exponentially (something I put down to the Levothyroxine) and I was packing two lunches for her. So it wasn’t that. Luckily a friend who was driving by put Seren in her car and took her back to my house while I dropped off my other two children. It happened again and again. Looking back, I can now see the impact it was having on my other daughter. She once sat down on the pavement with Seren and pulling a dandelion, she blew it and quietly said, ‘I wish Seren would get better’. The impact of Seren’s illness on her was to manifest in later months. And for me too. People often and casually talk about being burnt out, but I don’t think you really know what it means to be burnt out until you experience it. Until your cup is completely empty and the slightest task feels overwhelming and confusing and is accompanied by weird physiological symptoms. Seren was taken to hospital to have some basic investigations into this problem of not being able to walk very far and I recall vividly that I feared things like Multiple Sclerosis (MS). Unlikely for someone her age but then again, she was an unlikely candidate for Hashimoto’s. I went to the hospital with her, dolled up to the nines because I was later to give a public lecture in relation to a book my co-author and I had just released. The topic was potentially contentious because it was about Rose West, the woman widely known as a serial killer. Not only that, but I had also agreed for it to be filmed for YouTube and I’d been told that the event was a sell-out and important people were attending. My Dad rang as I sat by Seren’s hospital bed and I remember telling him that I honestly didn’t know which problem to focus on: the fact that Seren was now having trouble walking or that I was about to give a public lecture and was petrified I may be so distracted that it was possible I could have a panic attack in the middle of it, become publicly humiliated, and lose all credibility. ‘I feel like I could throw up’, I told him. And in fact, I almost did. But eventually I left Seren as my husband arrived and I got on with what was immediately in front of me. I didn’t know what was to become of Seren that day and I honestly can’t remember what we did about collecting our other two children. My phone didn’t have any signal in the studio anyway and perhaps that was a good thing. In the end, I loved giving the public lecture and I am fortunate enough to be surrounded by colleagues and senior colleagues who are truly kind and supportive professionals. I had a great audience, and it was a great experience. If you’re interested in true crime, you can watch the lecture here.

Truthfully, I could already see that I was on my way down, that I was beginning to increasingly suffer with stress. I was having trouble focusing on anything else except for Hashimoto’s and what the next evening would bring. The main problem was that Seren remained ill so we just couldn’t go back to the way we were before. I’ve always been career-orientated and could never see myself not working and I am someone who would say to any woman that yes, you certainly can have it all. But it is really, really hard. The family photograph in this blog depicts a truly happy family. And we are truly happy. My husband is the kindest person in the world and the children make us laugh every day. But we are both stressed, we both have careers that need attention, our house is carnage when it comes to the younger two children, the house constantly needs tidying or cleaning, and we have no help. And if I’m honest, even when help has been available, no one has been exactly a willing recipient. Three children in the house is incredibly tough and add into the mix one who is suffering on a daily basis. I was beginning to find I was on the verge of tears whenever someone spoke to me.

Anyway, the hospital visit turned up nothing. I don’t know what I was expecting. A doctor to sweep in and say, ‘We simply must get to the root of this autoimmune disease and that will explain your ongoing symptoms’. For them, there was nothing to suggest that Seren was in immediate need of any invasive tests. All I can say is that our GP was amazing, always taking us seriously and understanding the frustration. Still, I felt like we remained alone in this and there are important reasons as to why we couldn’t just sit back and wait for things to just go away by themselves.

Hashimoto’s is an autoimmune disease, and an autoimmune disease occurs because something has gone wrong with the immune system. And if I don’t find out why Seren’s immune system went wrong then I leave her in a situation where she is significantly more likely to develop another autoimmune disease[1]. Not only that, but studies show that hypothyroid women whose thyroid levels have stabilised via treatment, often remain symptomatic and do not enjoy an optimum quality of life. Despite receiving treatment via Levothyroxine, women with hypothyroidism are more likely to suffer with depression and anxiety than a control group of euthyroid[2] women[3]. An excellent Spanish study[4] showed that even after reaching normal thyroid functioning with medication, women scored significantly lower on a tool measuring their quality of life, namely their physical and mental well-being. These differences could not be explained by other factors such as their education level, social status, age, whether they smoked, were employed, sexual orientation and their BMI value. What that means is that differences in quality of life between hypothyroid and euthyroid women could be explained by the hypothyroidism alone. Other studies have shown that hypothyroid women generally gain more weight and have a higher BMI than euthyroid women[5],[6],[7]. No one wants their child to grow up with a sub-standard quality of life, not to mention the problems that come with a higher BMI value namely, hypertension, diabetes, and cardiovascular disease[8]. Anyway, the point is, synthetic treatment of hypothyroidism is ‘insufficient to resolve the symptoms in all patients’. Romero-Gomez et al. (2020) refer to studies that suggest why this might be the case. It gets complicated, but one suggestion is that alterations can occur in a particular enzyme because of an individual’s genetic susceptibility to these changes, affecting the conversion of T4 to T3 (Triiodothyronine). It has also been argued that the single therapy of LT4 (i.e. Levothyroxine) may not be sufficient enough to resolve all the patient’s symptoms because it doesn’t replicate the normal physiology of thyroid hormones. Romero-Gomez et al. point to Peterson et al.’s study in which patients were given desiccated thyroid extracts (DET) which causes higher than usual T3 levels and they found depressive symptoms were improved in patients. Despite this, the evidence of combination therapy, that is, the use of both LT3 and LT4 does not conclusively indicate a clear benefit to patients[9] [10].This research doesn’t really shine the light on why Seren continued to suffer despite her thyroid levels having now normalised. The other stark observation I was making was that I couldn’t see much information on children with Hashimoto’s. Even my favourite well known ‘Hashimoto’s Doctors’, Dr Kharrazian and Dr Kajiki make no reference whatsoever to children with the condition. It seems to be the case that it ‘should’ be women my age getting this disease. And that was coupled with the surprise of the medical professionals who reacted in surprise at Seren’s diagnosis. So, it goes back to the same old question I have: why? It turns out that some autoimmune diseases such as rheumatic, endocrinological, gastrointestinal and neurological ones have increased by up to 7 percent per year over the last 30 years. This fact becomes even more interesting when we consider that the human genome (particularly autoimmune related genes) has not changed significantly during that time. This lends support to the hypothesis that factors in our environment play a key role in the increased prevalence of autoimmune disease[11]. Like I talked about in the last blog, I was beginning to understand that a disruption to the gut microbiome could well have a role to play. Seren may or may not have coeliac disease but the research sure as heck shows a strong link between gluten intolerance and Hashimoto’s disease[12],[13],[14],[15],[16],[17] because according to Kharrazian (2010), the molecular structure of gluten closely resembles the thyroid gland and if gluten gets into the bloodstream because of a leaky gut, the immune system attacks to remove it. The thyroid gland then, becomes a victim of mistaken identity.

So, my only clue thus far was that Seren couldn’t go near gluten, and she couldn’t tolerate rice. Were there other foods that were wreaking havoc with her body? I mentioned in an earlier blog that the dietician was no real help to us. The advice was just so medicalised. We needed better than this. And that’s when we discovered a Nutritional Therapist who was to help us make some important discoveries. I do remember telling the Nutritional Therapist that I couldn’t help but notice that Seren’s grey complexion and dark eyes gave the impression of her appearing ‘poisoned’. And therein laid the first clue.

[1] Kharrazian, D. (2010) Why do I still have thyroid symptoms? When my lab tests are normal? Carlsbad, CA: Elephant Press.

[2] Meaning normal functioning thyroid.

[3] Romero-Gómez, B. Guerrero-Alonso, P., Carmona-Torres, J. M., Notario-Pacheco, B. and Cobo-Cuenca AI. (2019) Public Health. 16(23):4776.

[4] Romero-Gómez, B., Guerrero-Alonso, P., Carmona-Torres, J. M., Pozuelo-Carrascosa, D. P., Laredo-Aguilera, J. A. and Cobo-Cuenca, A. I. (2020) ‘Health-Related Quality of Life in Levothyroxine-Treated Hypothyroid Women and Women without Hypothyroidism: A Case-Control Study’, Journal of Clinical Medicine, 27, 9(12): 3864.

[5] Kelderman‐Bolk, N.; Visser, T.J.; Tijssen, J.P.; Berghout, A. Quality of life in patients with primary hypothyroidism related to BMI. Eur. J. Endocrinol. 2015, 173, 507–515.

[6] Jonklaas, J.; Nsouli‐Maktabi, H. Weight changes in euthyroid patients undergoing thyroidectomy. Thyroid 2011, 21, 1343–1351.   

[7] Peterson, S.J.; McAninch, E.A.; Bianco, A.C. Is a normal TSH synonymous with “euthyroidism” in levothyroxine monotherapy? J. Clin. Endocrinol. Metab. 2016, 101, 4964–4973. 

[8] Guh, D. P., Zhang, W., Bansback, N., Amarsi, Z., Birmingham, C. L. and Anis, A .H. (2009) ‘The incidence of co‐ morbidities related to obesity and overweight: A systematic review and meta‐analysis’, BMC Public Health, 9, 88.   

[9] Okosieme, O., Gilbert, J., Abraham, P., Boelaert, K., Dayan, C. M., Gurnell, M., Leese, G., McCabe, C., Perros, P., Smith, V. et al. (2016) ‘Management of primary hypothyroidism: Statement by the British Thyroid Association Executive Committee’, Clinical Endocrinology, 84: 799–808.   

[10] Jonklaas, J. (2017) ‘Persistent hypothyroid symptoms in a patient with a normal thyroid stimulating hormone level’, Current Opinion in Endocrinology Diabetes Obesity, 24, 356–363.   

[11] Lerner, A., Freire de Carvalho, J., Kotrova, A. and Schoenfeld, Y. (2021) ‘Gluten-free diet can ameliorate the symptoms of non-celiac autoimmune diseases’, Nutritional Reviews, 00(0): 1-19.

[12] Collin, P., Salmi, J., Hällström, O., Reunala, T. and Pasternack A.  (1994) ‘Autoimmune thyroid disorders and celiac disease’, European Journal of Endocrinology, 130(2): 137:40.

[13] Akçay, M. N. and Akçay, G. (2003) ‘The presence of antigliadin antibodies in autoimmune thyroid diseases’, Hepatogastroenterology, 50, Supll2.

[14] Sategna-Guidetti, C., Bruno, M., Mazza, E., Carlino, A., Predebon, S., Tagliabue, M. and Brossa, C. (1999) ‘Autoimmune thyroid diseases and celiac disease’, European Journal of Gastroenterology Hepatology, 11(8): 939-40.

[15] Strieder, T. G., Prummel, M. F., Tijssen, J. G., Endert, E. and Wiersinga, W. M. (2003) ‘Risk factors for and prevalence of thyroid disorders in a cross-sectional study among health female relatives of patients with autoimmune thyroid disease’, Clinical Endocrinology, 59(3): 396-401.

[16] Hakanen, M., Luotola, K., Salmi, J., Laippala, P., Kaukinen, K. and Collin, P. (2001) ‘Clinical and sub-clinical autoimmune thyroid disease in adult celiac disease’, Digestive Diseases and Sciences, 46(12): 2631-5.

[17] Jiskra, J., Límanová, Z., Vanícková, Z. and Kocna, P. (2003) ‘IgA and IgG antigliadin, IgA anti-tissue transglutaminase and antiendomysial antibodies in patients with autoimmune thyroid diseases and their relationship to thyroidal replacement therapy’, Physiological Research, 52(1): 79-88.

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