Exploring the Layers Beneath ME/CFS – Part ThreeNovember 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.
- Start Levothyroxine to begin to support my Underactive Thyroid.
- 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.
- 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)
- 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
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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
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