In the past few years, I’ve focused on getting more and more iron from plant-based sources into my diet to achieve a better balance. I still eat organic eggs, fish and white meat (organic where possible/affordable). Very occasionally red meat, when my mum makes a lovely stew. There is actually an abundance of iron in plant-based foods – it’s just knowing which foods to focus on, like beans and legumes, dried fruits, almonds, avocado, certain vegetables like broccoli and mushrooms, and dark leafy greens. Olives too – but I never know which category they really fit into!

I used to follow the typical diet with plenty of meat (red 3x/week), plenty of/likely too much dairy, and carbs likes bread and potatoes. I knew I could have done with getting more vegetables in my diet, so I focused on this. I loved eating things like eggs, spinach, rocket, broccoli, oats, sausages (I know!), liver pâté, rice, raisins, fish, cereal (especially corn flakes), and chicken enchiladas. So I was getting my daily dose of iron.

Here’s the problem: if you have an autoimmune condition like Endometriosis or Hashimoto’s thyroiditis, you may not be making up for the lost iron due to blood loss with heavy periods and you may not be absorbing it effectively enough with conditions like Hashimoto’s. Doctors check the haemoglobin but there’s one thing some don’t routinely check: iron FERRITIN. Mine was depleted. So In July 2013, I finally knew why my chronic fatigue had still not fully lifted after my dietary changes for endometriosis.

Iron is essential for transporting oxygen around the body and for protein metabolism. Hence why I was breathless, falling asleep during lectures, found exercising challenging and was yawning all of the time – just some of the ‘visible’ symptoms of iron deficiency. I also had anxiety and palpitations.

It took YEARS, 18 months following excision surgery (in March 2012) during which I lost a lot of blood (and 3 months of continuous bleeding from one month after the surgery), to finally be told I had Iron Deficiency Anaemia. Yep. Even three months before I found out, I had fainted in the shower, but also my eyesight became blurred, my speech slurred and I was physically weak – I’ve never quite understood this but I do wonder if it was Hashitoxicosis as it tied in with when the hyper symptoms like the drenching night sweats started slowly – university security took me to hospital but they just let me go as I was ok after about two hours. I’ve had some similar episodes but less severe.

I didn’t understand why it was anaemia when the haemoglobin is still within the ‘normal range’, albeit the very bottom end, but that’s what I was told. One month before getting that diagnosis, I had cut out the red meat as I had linked it with the pain I got from the adhesions, and I thought it was because of that – though it definitely helped my stomach. The GP told me that it would have made absolutely no difference to my iron level, and that it was a result of years being undiagnosed and considering how many iron rich foods I ate. (Good to know!). I was prescribed ferrous fumerate for 2 months (there are different types of pure iron supplements – this one is supposed to have less side effects). I researched the iron issue further after finding out and discovered that it’s best to take it with vitamin C rich food to achieve the most absorption, otherwise it’s as little as around 15%. So I bought a pure vitamin C supplement without the added rubbish, and put about half a teaspoon in a glass of water. Foods containing vitamin D inhibit iron absorption, so I took the iron in between meals. My ferritin shot up after 2 months.

It really goes to show how important it is to check and monitor the iron ferritin level, as iron deficiency may help to explain some of the symptoms experienced due to the endometriosis and other (possibly undiagnosed) autoimmune conditions.

The most important message here is to get the iron ferritin tested by a doctor and that they prescribe the correct dosage that’s suitable for you if you have a deficiency because there are certain interactions with iron. Don’t self-treat with a decent dose, unless agreed with the doctor. Some iron supplements from health food shops are a bit of a con though, too, as they have a pitiful amount of iron in them for the money.

From further reading since, I’ve come to learn that a large part of what was driving my iron problem was undiagnosed Hashimoto’s disease – finally diagnosed in Summer 2016 after a long, long fought fight and with some crazy symptoms. It was only last summer too that I started on sodium-levothyroxine (25mcg at first due to my really fast heart) and I only got it because my TPO antibodies are >1300.! This was also delayed by several more months because the endocrinologist didn’t test them at first, and even wrote to the GP that she didn’t think it likely I had an endocrine disorder! That was just before she got my TPO result back… and even worse, not a single GP at the practice responded to the letter to start me on thyroxine! Not just that, but when I complained and was at the point of facing giving up my job (again!) because of the heavy symptom load, the GP said we need to check the TSH again and even then it may still be ‘normal’. I told her there are two choices – I go on thyroxine … or I have to quit my job.

In the meantime, I took the iron 210mg again for one month, in agreement with the doctor, which helped see me through the month or so up to my sister’s wedding. I honestly don’t remember much of what I did last May to July. Only I remember Brexit, I will never forget that. I even wrote an article on it for work.

My TSH was around 4 at the time (had been higher) but my symptoms swing between hyper and hypo, hence the ‘normal range’. One doctor even told me that my case is special and that sky high TPO antibodies are rare. Hmmm. I then sought a second opinion (privately again – there’s a trend here) and a second consultant said yes to putting me on the thyroxine. He also did further tests that my sister’s endocrinologist hadn’t done (and have since found out that endo is facing a medical tribunal). My deep tendon reflexes were rubbish, and he noted the hyperpigmentation on my forehead. My fast heart, my slow heart. The drenching night sweats for 4 years which started (I think) just after the excision surgery. The painful tingling, falling asleep and napping for years, and the extreme cold not just in my hands and feet. There are too many symptoms to list.

Needless to say, having implemented the dietary changes for endometriosis in the last 8 years, I felt as if what had I done wrong? What more could I have done? I’ve told myself that I’ve done what I could with all the knowledge I gained from my gynaecologist and nutritionist, as well as from further researching what was relevant for managing the endometriosis – which has worked for me in terms of the endo, with the diagnosis I had. I’ve been simply failed over and over by some doctors (mainly to do with getting referrals) as the missing links have been undiagnosed autoimmune conditions which may require further diet adaptations. Only now, after the knowledge I’ve gained from beating around the bush with different doctors to find good ones, and extensive reading online and in books, I think there were several triggers to my Hashimoto’s:

1. Having the endometriosis.
2. Being put on the pill for some years to help treat the symptoms of the endo. The estrogen, thyroid hormone and adrenal hormones are play together.
3. Infections as a child like Scarlet fever and I had tonsillitis (and had my tonsils out at age 9). The thyroid and tonsils share the same blood supply.
4. Being prescribed a super fluoride 2400ppm toothpaste at age 17 for ‘acid erosion’ and sensitive teeth – I’ve read that fluoride is an endocrine disrupter, so it gets me wondering… and I was on it for nearly ten years. I asked my dentist what he thought about stopping it due to the Hashimoto’s – I got a worried look and a ‘yes, probably’. Since last summer, I’ve switched to a normal toothpaste and I don’t have any sensitivity issues at all.
5. Glandular fever 7 years ago, plus an even worse relapse a few months later.
6. Undiagnosed iron deficiency anaemia – the thyroid requires an optimum level of iron.
7. 3 laparoscopic surgeries – surgery puts a stress on the body.
8. Other autoimmune conditions that are finally being investigated (Celiac, etc.)

I found out last year that my ferritin was actually checked in the summer of 2012 following my excision surgery in the March and at the request of my gynae, (as I had asked the GP practice back home for a whole big print out of blood results for my German medical insurance) but the GP who actually tested the ferritin had failed to treat the issue…

My iron still dips at times despite plenty of iron sources but at least the GP now regularly monitors it, both in the UK and in Germany – one time though, my ferritin even went up on its own, just before I got pneumonia two years ago – I was eating a lot of figs at the time haha. That’s the only thing I could put it down to, so who knows. My iron dipped again last summer while the thyroxine was delayed and delayed. I couldn’t function, I was so close to giving up my job, as I struggled to hoover or even cook dinner. I couldn’t even push myself out of bed I was getting so weak – the summer heat didn’t help, as I was swollen too which caused my joints and nerves to flare up.

The odd thing is that when my ferritin was tested in the couple of months after I supplemented the iron last summer, it had hardly come up unlike the last time! So this says to me that I just wasn’t absorbing it this time – I needed the thyroxine to kick in. I’m now on 75mcg, my symptoms have reduced massively, some still linger but it’s an incredible improvement. My TSH is tested about every 4 weeks.

I hope my ‘story’ may help you in some way. I feel like this post sounds super serious, but I think it’s pretty important to get it out there. Kate xx