Exploring the Layers Beneath ME/CFS – Part Three

November 7, 2018 8:00 am

Part Three – Further Consultations and Digging Deeper

A number of weeks later, after having had the MRI scan, I was back at the hospital to see my Endocrinologist again. The MRI results showed that I had a number of small lesions in the white matter surrounding my brain which my consultant said was most likely due to inflammation. But, surprise, surprise, ‘nothing could be done’. It didn’t show a tumour, which I was of course grateful for, but also didn’t show a Pituitary Tumour either, as was first suspected.

This kind of threw my Endocrinologist off course, because he couldn’t now put my endocrine dysfunction all down to one simple diagnoses. It was more complex than that.

As the consultation went on, my Dr looked at the most recent set of blood tests that had come in. My thyroid results had now gone out of range, meaning I now officially had the diagnoses of Hypothyroidism (under-active thyroid). I had suspected an issue with my thyroid long before these results were in, mainly due to the classic thyroid – type symptoms I had recently developed such as weight gain, low ferritin levels, irregular periods, high cholesterol, hair loss, easy bruising, severe insomnia and about 20 other symptoms that were all new.

A good friend of mine has had Hashimotos and Hypothyroidism for over 20 years and has been a blessing when it has come to advice and support with all of this. She suggested a couple of amazing books (I’ll link them at the bottom of this post) and also made me aware that so many cases of Hypothyroidism are missed and go undiagnosed each year.



The First Steps of My Healing Plan

The initial plan for me was to slowly get on to treatment and support for my Thyroid. We had to be careful due to my low Cortisol levels (adrenal insufficiency) as going on to Thyroid medication too quickly could over tax my adrenals and be too much for my body to handle, which could potentially be dangerous. My aim was to start off really slowly and gradually build up the dosage over a period of months until I was on the right level of Thyroid support for me.

I was prescribed Levothyroxine, which is the most commonly used thyroid treatment and is a synthetic version of one of the thyroid hormones we produce in our body. I am aware many people opt for something called Natural Desiccated Thyroid as a treatment option, but for a number of reasons, I decided to go onto the synthetic version as a starting point. This way I could be monitored more easily (in terms of blood tests etc) whilst I got onto a significant dose and then consider alternatives at a later stage.

My Endocrinologist also suggested I go on a diabetes drug called Metformin.  Metformin can apparently help some people with PCOS as it assists in regulating insulin resistance and encourages weight loss. Excess fat in the body encourages higher estrogen levels so we needed to get my bmi down a little.

I was reluctant to try Metformin. This is where my intuition came in yet again and a deep trust of what was right for my own body. I felt like I wanted minimum pharmaceutical intervention, and really wanted to address the root causes of my illness. Going on Metformin felt like a sticking plaster. I accepted that I needed thyroid support, this step felt right to me as it would be giving my body the support it desperately needed in treating the Thyroid that was causing so many extreme symptoms.

The PCOS felt different. It wasn’t apparent to me in the way my Thyroid symptoms were and I also had a strong hunch that the PCOS was a downstream affect of other hormonal stuff.

I wasn’t prepared to take a drug to tackle insulin resistance and aid weight loss, if there was a way I could do this naturally. I wanted to try and lose weight myself, and allow my thyroid levels to gradually come up and reassess the situation then. Adding another drug into the mix that wasn’t absolutely essential felt wrong, so I thanked my Doctor for his suggestion, but told him I would try and heal this myself first via diet and nutrition.


So, I left my appointment with a rough plan.

  1. Start Levothyroxine to begin to support my Underactive Thyroid.
  2. To keep an eye on my adrenals. My Dr had diagnosed advanced adrenal fatigue, but we had decided to avoid Hydrocortisone for the time being and see if the Thyroid medication and other holistic approaches, were enough to help my adrenals begin to heal.
  3.  I was to take my Iron tablets and try and get my ferritin levels up to the range of 70 – 90 which is the level needed for optimal thyroid function (my ferritin was at 11 when tested earlier that year)
  4. I was going to try and lose weight in a healthy balanced way, eating whole foods and following a plan that would help keep my blood sugar stable. My goal was for around 1.5 stone to bring my BMI into a really healthy range and lower my Estrogen levels, which would then hopefully have a knock on effect on the rest of my hormonal system.

This plan of course was in addition to the things I was already doing to support my healing in terms of supplements etc. I’ll write more on this in part four of this series where I’ll go more into the holistic side of my treatment plan.


Functional Medicine Doctor and Suspected Lyme Disease

The final Dr I saw last year, was a functional medicine Dr from America who was running a clinic in England for the month of June. He was highly recommended to me by a close friend, but I’ll be honest with you, I didn’t know a huge amount about him before stepping into my appointment with him that day. I was just incredibly open to receiving all the insight I could on my case and from what research I had done, he seemed to be an extremely knowledgeable man.

Dr Jess spent three hours with me and took a detailed history of my case, he analysed all of my test results from the past year and also did a live blood analysis with me. This is where a sample of blood is taken and put on a slide under a microscope. A ‘live’ image then appears on the screen and you can literally see what is happening inside your blood.

My live blood analysis clearly showed that I had high toxicity in my blood (which is what the mitochondria tests I had from the Optimum Health Clinic had also picked up), low Digestive Enzymes, Anaemia, Systemic Candida (again – picked up on my Mitochondrial tests) as well as evidence of possible late stage Lyme Disease.


Photos from my Live Blood Analysis


When Dr Jess suggested Lyme, I was of course not encouraged by this possibility, but also not shocked. So many people with M.E are discovering that they have late stage Lyme disease (I’ve written a little more on this in the notes at the bottom of this post.)

I asked what the next step was. I was given some options, one being that I could send my blood to be tested over at the lab in Germany, where tests for Lyme are currently most accurate. But even if I tested positive for Lyme Disease, my body wasn’t currently at a stage where I would be able to tolerate treatment to begin killing it off. Dr Jess’ words were ‘you’d be in hospital within a week if you were to start any Lyme killing protocols at this stage.’

We needed to start slowly and gently strengthen my foundational system first using supplements to help repair my gut, take in optimal nutrients from food and balance my mineral status.

The other thing I had to bear in mind (as is also the case with M.E) is that there is no one size fits all path for treating Lyme disease unless it is caught in the very early stages, in which case it can be treated with a course of antibiotics. The knowledge of this kept my feet on the ground some what. When you are desperate for answers and a solution to chronic illness, we can grasp at things and end up frantically rushing down various paths and spending a fortune in the process. I knew I had to take this slowly and keep my head in a centred place whilst calmly working out which next steps felt right for me.

After much thought, I decided not to test for Lyme. I felt overwhelmed enough as it was, and decided that it could go in the ‘on hold’ box for now. I had more than enough to be working with.

As you can imagine I left my appointment with Dr Jess feeling exhausted mentally and physically.

I had found out SO much.

The question now was, what was I going to do next..?


This series will continue with Part Four – ‘What Happened Next, My Holistic Healing Protocols and Where I am at Now’

Love, Emma x


Make sure you are subscribed if you would like to receive new blog posts straight to your inbox. I’d love to have you as part of the Consciously Healthy Tribe…

You can also connect with me on Facebook and Instagram


A note on Lyme Disease ~ Any of you who are in the online ME/CFS groups will probably be aware that there have been many cases in recent years of people with ME/CFS discovering they have Lyme Disease. It is a controversial area and has gone under the radar for many years. The NHS don’t test for late stage lyme. I don’t want to talk too much about Lyme in this post, as I feel this is a complex enough post as it is without going there, but I may share my views at a later date. John Caudwell is doing some amazing things to raise Lyme awareness if you want to research him and his current work.


Thyroid Healing Books

Your Thyroid and How to Keep it Healthy ~ by Dr Barry Durrant-Peatfield

Hashimotos Thyroiditis. The Root Cause ~ by Dr Izabella Wentz


There are a write ups on each of these books in this post




Would you like to be the first to hear about brand new Consciously Healthy blog posts? 

If you would enjoy having new posts sent directly to you, just pop your email address into the subscription box ~ you’ll find it either below this message or in the sidebar depending what device you are using.  

New blog posts are sent out every couple of weeks or so and it goes without saying, your email address won’t be shared with any other parties.

I’d love to have you as part of the Consciously Healthy Tribe!


Important note to new subscribers

Make sure you look our for your welcome email. Some people find it sneaks into their junk folder, so just keep an eye out and mark Consciously Healthy as a safe contact if this happens so you can continue to receive future posts to your inbox. 


Disclaimer: This Website and all the information which it contains is based on my own personal experience and health journey which I am sharing for educational and informational purposes only. Please consult your own doctor or healthcare provider to determine the best course of treatment for you.


  • Donna says:

    Oh Emma, I can completely understand your decision to not do blood tests for Lyme. Given that they are unreliable and costly. I also wonder, given the approach you are taking, if getting a positive test would even change things? If you understand what I mean. I was so relieved to see you mention Lyme though. As I was reading about your symptoms and the lesions/inflammation in your brain it was setting off my inner alarm bells (but I think I’m overly sensitive to it given my own experience!).

    These posts you are writing are so insightful and I am sure they will be of huge help to others.

    • Emma ~ consciously healthy says:

      Hi Donna!

      Yep… Lyme is on my radar don’t worry. It’s been a difficult one, because as you can see from this series of posts SO much stuff has come up. I’ve had to kind of break it down? And do things one step at a time (i.e try and address my thyroid first… etc etc)

      I decided to put Lyme stuff on hold simply because of the unreliable testing, the varied approaches in treating Lyme, cost, and also knowing that there were things I could be doing first (diet/building foundations etc). I am pretty sure tests would come back positive if I tested for it.

      Having said that, if money was no issue? I would probably test for Lyme to see? And then have further consultations with the American Doctor to get his take on it so I have a clearer idea of what the next steps might be purely in terms of Lyme Treatment. But at the moment I just can’t afford it, especially when there are no guarantees.

      We shall see what the future brings. But it’s definitely on my radar as I said.

      Sending a big hug

      And thanks for your continued support ☺️

      Emma x

    • Donna says:

      It’s so overwhelming being presented with all these things being ‘wrong’ isn’t it? I think you are taking a very sensible approach. I totally get your reasons behind not testing for Lyme.

      Though I knew about it and suspected it for a while, I put off testing too. Because I didn’t see the point in spending money to know for the sake of knowing. At that point, I felt like I wouldn’t want to do any more than I was already doing (with herbs and nutrition etc). Plus, deciding which test to do was overwhelming in itself. I actually wrote about it on my blog at the time (I’ve linked it in the comment in case you are interested).

      The decision to test came later when I’d already put a lot of things in place and I had reached a point where i felt
      it would impact my treatment decisions and I decided I really needed to know for sure.

      I know you will be on it because you are great at researching and looking for info, but in case you don’t know, the book Unlocking Lyme by Dr Bill Rawls is a brilliant resource.

  • Larissa says:

    Thanks so much for sharing your experience through these posts, Emma. They are so helpful to read. Something I often struggle with is not trusting the methods or doctors I am seeing, even in the ‘alternative medicine’ realm which is overall more understanding of complex chronic illness. I tend to get overwhelmed by the information coming at me and feel I need to carefully sift through to see what has actually been at least somewhat recognized by science or is at least evidence-based – or at the very least, sits right with me in my gut instincts.

    For example, I cannot find much information that supports any kind of credibility for live blood cell analysis, although I have had it done myself, and therefore I start to question the practitioner who is using this method. In terms of Lyme testing, I’ve been told by Western doctors and even a naturopath that Igenex in the States and ArminLabs in Germany produce false positives and are unreliable – but at the same time that the generic lyme testing in Canada is also unreliable. So what’s a person to do? Do you struggle with this kind of uncertainty as well? How do you cope with it?

    Thanks again!

    • Emma ~ consciously healthy says:

      Hi Larissa

      Thank you so much for your kind words about my posts, I am ever so glad they are helping you.

      I really relate to how you feel, because I have often (and do often still!) feel that way myself.

      The Lyme thing is a huge conversation and controversial area isn’t it, which is actually, why in the end I decided not to test for Lyme, but instead to focus on other areas for now.

      I have a strong feeling you are going to find Part Four helpful as I cover lots in there about how I am moving forward – and some of that includes how to navigate through the worries you speak of.

      There is a lady called Dr Kim D’eramo who’s online videos have helped me loads. She healed herself from a long term illness through holistic means but was originally trained in western medicine. Her work shares a lot about getting our body’s into a healing state and tapping into its innate wisdom to heal.

      I believe we (of course) need to search externally for answers to a degree… but that our main source of power and healing lives within us. The basics are so important…

      Have a read of Part Four when it is released tomorrow and then let me know what you think. Happy to chat further if you still have any questions then.

      Lots of love,

      Emma x

Leave a Reply

Your email address will not be published. Required fields are marked *