Hashimoto's Thyroiditis was a brand new name to me! I reached out to Dr Google and my own GP to help better understand it.
So what is it?
To keep it short and sweet, with Hashimoto's Thyroiditis, the immune system is attacking the thyroid gland. The thyroid gland produces hormones that regulate the body's temperature and metabolism. Thyroid antibodies are detected via straight forward blood tests. Interesting that I always felt cold and could not lose weight, no matter what I tried.
How I discovered elevated thyroid antibodies
I participated in a trial at our local hospital throughout investigations in to multiple miscarriages. The trial was looking for women who had previously miscarried on more than 2 occasions, to determine whether the pharmaceutical drug Levothyroxine, could increase the chances of carrying full term for women with elevated thyroid antibodies.
I was asked by the research team at my local hospital, if I would give a blood sample to do the initial test. Of course I agreed to it, you can imagine how desperate we were to have our baby at this point, so a simple blood test was nothing. I'd already had so many blood tests done, firstly to try figure out why I wasn't getting pregnant, and then, when I was getting pregnant, why I continued to miscarry on many occasions. Blood tests always came back "normal". I even had the top specialist in this field at Liverpool Women's hospital tell me there was nothing he could do because he couldn't see any red flags from any of the tests that had been done by him, other GPs and Specialists. So, I felt confident this one would be the same, I.E. "normal". I was wrong.
I will forever remember the day the research leader from our local hospital called me, to tell me that I could participate in the next phase of the TABLET trial, because my blood test detected raised levels of thyroid antibodies. I didn't know whether to be happy for the opportunity to try improve my chances of carrying full term (after such a rough and bumpy journey), or to be concerned about the thyroid antibodies. I asked the research nurse what my levels where and what a normal level is. I can't remember the precise numbers she gave me but they were roughly;
normal: less than 19
my level: 327
It was clear to me that there was a problem with my level being so high compared with the normal range.
So what does it mean to me?
During the phone call, I asked lots of questions about it, and, due to her own personal experiences she was - thankfully - very clued up on the subject and able to explain top level views on what it meant, and the symptoms I may have already / develop in the future. I delved further in to the symptoms, and asked many more questions. As she rattled them off, I was mentally ticking them off, thinking wow, why hadn't I realised the symptoms, and why hadn't I been to see a GP about them. The symptoms were weight gain, low energy, dry skin on my extremities, thinning hair. I ticked them all off. Prior to this, I had mentioned to a good friend that it seemed strange how I was no longer able to lose weight, no matter what I did, and how I was constantly feeling tired. Her advice back then was to go to the GP, but I thought, it's probably just because I'm getting older and sitting down all day in the office, I needed to move more etc. I didn't feel comfortable going to the GP with it. It seemed a bit extreme to me. Perhaps I should have listened to her.
Armed with information from the research teams trial, off to my GP I went! My GP ran a series of tests and I was told that all results were normal. I asked what had been tested and on what basis was a "normal" result provided. I was informed that TSH (thyroid stimulating hormone) was the only marker used in the NHS protocol for elevated thyroid antibodies. Having done my own research via various Facebook groups, websites and highly respected people on the internet, I knew that TSH shouldn't be the only marker nor was it a reliable marker for Hashimoto's. Using TSH as the marker means its too late, and severe damage has already been done to the thyroid gland. When the TSH levels hit the red flag markers, the NHS could prescribe Levothyroxine. Levothyroxine would, in effect, be the sticking plaster for the damage already done to the thyroid gland because its fixing a symptom of the disease but its not fixing the root cause. It seemed insane to me, it didn't make sense. Why wait until the antibodies have caused so much damage, and made me (or anybody else going through this) very ill before doing something about it. I was in despair. Trying to grieve our losses, wondering whether to participate in the next part of the TABLET trail and now this. It was frustrating and it felt really lonely because it was so hard to explain it to my support unit. It's rather complicated. Also, because I seemed "OK" I felt like a bit of a fraudster, a drama queen going on about something that the NHS classify as normal.
Being a logical thinker, it made more sense to me to work out why I have the thyroid antibodies and to look in to whether something could be done about it. Even if it was something outside of medicine. Regardless of TSH levels, my symptoms were far from "normal" ( still are).
Eventually, due to my persistence, my GP referred me to an Endocrinologist who told me I was fine, he said he would discharge me because all my blood test results were normal. I was so disappointed by this. Actually, I had a terrible experience at this appointment, I was made to feel like I was wasting his time and generally being a pain the backside. I wrote to him following the appointment to express my concerns with how he handled it and how he had made me feel. It was a very negative experience.
I had no choice but to start doing my own research again; I read books, joined private groups, scoured the internet etc, and this is when I discovered that raised levels of thyroid antibodies are likely to be something called Hashimoto's disease. I wasn't ever diagnosed with it and still haven't to this day. Not one GP or the Endocrinologist mentioned the terms Hashimoto's disease or Hashimoto's thyroiditis to me. I continued researching but I was really struggling, I was exhausted, I was depressed from the multiple miscarriages, and I just couldn't figure out what I should do to sort it out, so I gave up, hoping it would go away. I put all my efforts in to my work instead. Sensible right??
Then, I finally carried full term and our little boy came in to the world in 2016, I was 43 years old at this point. The thought of thyroid antibodies and Hashimoto's disease was always in the back of my mind but I had other priorities, like carrying my precious little bundle full term and then becoming a new mum. After all that, it was a case of then figuring out a way to settle in to returning to work full time in a very high pressured environment as Head of Technology for a Plc. Time slipped away and its taken until now, 2021, some 5-6 years since detecting the antibodies, to put it back on the table, prioritise it and figure out what the hell I need to do to sort it out. Nothing has changed on the NHS front, TSH is still the only marker used, despite there being sufficient evidence that it should not be the sole marker. I knew there was no point in me heading to the GP to sort this out, its not my GPs fault of course, but the protocol is antiquated and doesn't support people suffering with this condition. I really hope that changes in the future.
I knew two things;
1) I didn't want my symptoms to continue worsening, unless there really was no other option
2) I had to try alternative routes to the GP / NHS ones
So, I'm currently working with a nutritionist on a new (to me) protocol under her guidance. The protocol is designed strip out all known immune system allergens, and, for all intents and purposes, reset my immune system, so that it stops attacking my thyroid. The process involves following specific dietary plans, and specific supplements, supplements that you can't just buy in the supermarket. I'm presently on week 8 of the 12 week plan, I've lost 7.3kg / 16 pounds in weight and I'm thrilled with the results so far. It is important to note, all food is nutritious and delicious, there are no "low fat" foods in this plan, only wholesome foods, just as nature intended intended it to be. No nasty fillers to replace the missing essential nutrients that you find in low fat versions of foods, either. At the end of the 12 weeks, I will run some tests to determine the impact on thyroid antibody levels.
It still infuriates me that the NHS protocol does not handle this scenario where thyroid antibodies are detected but TSH is "normal" using the NHS range. So many people are suffering, and many don't even know they have the antibodies but will be suffering. I get that there is no medicine for it, equally there is no guidance on what to do in the absence of medicine, and no support available to make recommendations on changes to nutrition and diet. People have reversed this disease through diet, this is a fact, there are real cases out there. So, if there is no medicine available why not promote the naturopathic approach and support people on their healing journeys. This is a real thing, the symptoms are real. I've paid a lot of money in to the health service throughout my career and I feel completely let down by it. I can guarantee I'm not the only one. I'm not grumbling about the NHS as a whole because I absolutely value it and we are so very lucky to have the service. Like all things, its not perfect, and this is one example that affects me personally, where its far from it, and I'm left to fund my own health care. I feel very fortunate to be able to prioritise it and pay privately for the help of a Nutritionist. I feel so sorry for the people who - for whatever reason - cannot do this. I dread to think how some people are left feeling so ill and out of sorts by this silent disease, it can be debilitating and they may not get help because they are "normal", I could continue rattling on about this but you can probably sense my feelings and frustrations so I'll stop here.
Moving on, this is really just an outline of my experience with getting to understand Hashimoto's Thyroiditis, how it affects me and what I'm doing to try reverse it / reduce the symptoms of it, via naturopathic protocols, in an attempt to reclaim some of my energy, good vibes and get my bounce back.
Key takeaways
What I've learnt throughout this process is, you really do need to take health matters in to your own hands. If you are investigating a health concern, make sure you totally understand it, make sure you know your own levels, what the normal ranges are and where your levels are in comparison to normal ranges. If you're not happy with the information presented to you, ask for more information or even a second opinion, ask for the next person in the hierarchy if you need to. Don't sit back and suffer from doubt and worry. Don't let 5-6 years pass like I did, prioritise it, prioritise YOU. Take care of yourself because really, when it comes to your own health, you're the only person who can do it.
I hope this sheds some light on Hashimoto's disease, in real life terms, inspires you to focus on your own health matters, and to explain why its important to dig further in to receiving information like "normal" from medical practitioners, to enable you to fully understand what's going on in your own body.
Thanks for visiting today.
Amanda x
Further reading and listening
https://www.healthline.com/nutrition/im-a-dietitian-living-with-hashimotos-disease#What-may-help-you
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