My Latest Health Discoveries
March 30, 2016 11:14 amI haven’t written much lately because things have been happening in my personal life and I’ve really needed time to rest and spend time properly listening to what my body needs.
I’ve been in hibernation a bit. But today I feel ready to share some of what has been going on with you all. So here I am….
Somethings been wrong. Different wrong. And I’ve known this since towards the end of last year.
I’ve had ME for 16 years now in total and living with something like this, you get to know your own body. Your own pattern of illness. What’s normal for you, and what’s not. What is ME stuff (due to overdoing it, relapse, stress, an infection that knocks you sideways etc) and what is not ME at all.
When I started this blog last April, after a long period of time feeling desperately unwell, I felt like I was beginning to really make my way towards recovery. I had a long way to go, don’t get me wrong, but I could see a light at the end of the tunnel.
I had begun having periods of time where I would wake up in the morning actually feeling like I had slept (and yes that feeling sometimes only lasted a matter of minutes…but it was there none the less.) I was able to drive my car again, attend a yoga class, socialise here and there with friends. Little scrumptious glimpses of feeling so much better.
My beautiful friend Niki and I in her hot tub last summer celebrating some better days
I had days being able to be out and about in the world not feeling as though I was going to pass out. I felt like I had my recovery plan figured out, and I was sure that continuing with juicing, regular meditation, my deeper inner work as well as pacing and using techniques such as the Gupta programme would continue to help my body and soul go from strength to strength.
Then around September last year things changed. And it was different. It felt different.
My body felt different
The whole thing has been almost cleverly disguised as a long, drawn out, relapse. In that, the exhaustion has been crushing, unpleasant symptoms have intensified and I am mostly unable to really do much apart from lay on the sofa and rest. But along with this, have come other things. New things. And deep down, I have instinctively known something different has been going on in my body for a while now.
Back in December of last year I got some abnormal blood test results. Quite a lot of them infact, including extremely low iron levels, abnormal thyroid readings, a number of hormonal imbalances and problems with my liver and kidney function. The more tests I had, the more seemed to keep coming back ‘strange’ (the doctors words). My blood pressure and heart rate have been extremely low and things such as my menstrual cycle have changed. Other new symptoms have come about too such as unexplained weight gain and hair loss. But the main thing being, I have really plateaued at a not very functional level and feel absolutely dreadful with minimal fluctuation.
Some of the many tests I’ve had done so far
I’ve instinctively known something other than my typical ME stuff has been wrong, but the challenge has been getting a Doctor to listen. I’ve seen a number of them now. Some openly showing they are perplexed and confused and basically shrugging their shoulders. One specialist in Leeds has said ‘it’s an ME relapse and you’ve deteriorated’.
I actually came out of that consultation and burst into frustrated, bewildered tears. It felt like he’d stuck a post it note that had ‘ME’ written on it on my forehead and sent me on my way, when I knew, just knew, that all that I’m experiencing right now isn’t normal for me at all.
Finally, a couple of weeks ago, after a referral from a Gynaecologist in Nottingham, I ended up sat in the office of an Endocrinologist. He had the list of my abnormal blood results in front of him, along with other results and bits and pieces.
After spending three hours listening to me, examining me and having a long look at all my history and results, he agreed something was wrong. At this point I thought he would say it was a thyroid problem (my blood test results show that I’m hypothyroid and I’ve got an endless list of thyroid-y type symptoms) But he said it’s a little more complex than that.
He agreed with me, that I am indeed suffering from hypothyroidism, and that alone will be making me pretty awful, but that there are lots of different endocrine problems going on. My Pancreas aren’t working properly and my Ovaries have been affected too. There is also a cascade of different hormonal imbalances going on such as raised LH and Prolactin levels amongst others that are either far too high or far too low. The low iron obviously isn’t helping things and all of this combined is leaving me feel like I’ve been washed up in a shipwreck!
Before I can get a proper diagnoses and start some kind of treatment, I need more tests and an MRI scan, so am currently waiting for that.
Resting with my beautiful Mug in a beam of sunshine
It’s been a really strange time to be honest with you. In some ways, I felt such relief when he told me things were going on after so long feeling like I’ve been fobbed off and not listened to. Sometimes we just know our own body’s don’t we? And I just knew this wasn’t my typical ME situation, especially as up until last September I had been progressively improving and getting to understand my self on such a deeper level emotionally and physically, it didn’t make sense that I should suddenly just deteriorate.
But in other ways it’s also been, and continues to be, really challenging. I feel very much in limbo and am stuck at home feeling so unwell and once again, like life is on hold. It takes a lot during times like this to keep feelings of lowness and depression at bay.
No matter how much Echart Tolle you read or Adyashanti you listen to, emotions, even the ones that don’t feel so good, are a natural part of being human and I’m allowing space for that and am doing my best to take each day as it comes.
I am of course, grateful for my spiritual learnings and get so much comfort from the knowledge that there is something larger at play here, that the universe knows exactly what it is doing, but it doesn’t take away the underlying unease that comes with this period of uncertainty.
It goes without saying, that whatever happens, I will continue to treat my body holistically, as I believe that is always the way to go when it comes to healing. If I need medical intervention, I will gladly accept it. But I also know the importance of balancing and healing the body with nourishing food, love and things such as fresh air and rest.
I felt it was the right time to let you all know what was going on as I’ve been rather quiet lately. This blog is precious to me, and so are you and I didn’t want to just disappear until things are all better (as tempting as it sometimes feels!) That’s not what real life is about at all, and I’ve always wanted this space to reflect real life. The struggles and pain as well as the moments of elation and joy.
I’ve always written from the heart and from a place of authenticity, and as this is a part of the complexity of my journey right now, it only feels right that I share.
So here it is. What’s going on right now in all it’s uncertain messy glory.
I am so hopeful that once I know exactly what I’m dealing with, and let’s just hope it’s something like a Hypothyroid issue with some dodgy hormonal imbalances as a side effect, that I can move forward with a way of treatment and begin to feel so much better and continue on going from strength to strength, but until then…I’m taking one day at a time.
I’ll keep you posted…
Much love to you
Emma x
***Little note for those of you lovelies who are regular readers, the ‘why I got sick with ME again after making a full recovery’ post is still on its way! I just need to be in the right headspace to finish it off. Lots of love to you all and thanks for your continued love and support. You guys are wonderful xxx
Categorised in: Emma's Journey
14 Comments
Thank you for being so open an vulnerable Emma. This makes it real and I am able to relate, which I’m guessing many others can to.
4 years ago I walked into a bio identical hormone doctor’s office after I had lots of blood work done. His first words to me were, “how are you even able to walk in here?” Every one of my hormones including HGH were barely registering. I am on a lot of natural dissicated thyroid, estradial and testosterone injections, HGH homeopathic, progesterone and more.
I’m not bed bound or house bound anymore, but still not able to work a job.
Blessings to you on your search for your answer.
Tammy ~ Thank you so much for your comment. I’m glad my being open and honest helped you relate, sometimes it’s not the easiest thing to share whats going on, especially in the tougher times in life is it? We naturally want to hibernate and hide away!
I’m sorry to hear you have been through a similar experience of so many different things being wrong and out of balance, but so happy you are improving and have had at least some relief from you symptoms. Its overwhelming isn’t it? Especially when you first hear of the endless list of imbalances and problems…
However, having said that, I am also grateful to finally be closer to finding some answers and once I know more, beginning some kind of treatment whatever that may be! The question will then come of what treatments to take and what approach. So incredibly complex isn’t it.
Sending lots of love to you,
Emma x
Emma, my lovely friend, I knew you were feeling ill, and although you now have other things to face, at least the medical profession are now listening and will try to sort it all out quickly.
Did you have to do all this privately? It can cost us all a fortune to get advice, can’t it?!!
I pray for your healing and if there is anything I can do to help I will do it.
Some weeks ago, I wrote how much better I was feeling, and I still am from M.E as it seems to be fading a little, but like yourself, I now face another health problem; my heart of course.
BP of sometimes only 70/40 causing me to faint, and now a further blood test shows I have a raised BNP level (think it is a protein/hormone) which when released into the blood is indicative of several possibilities … Kidney probs etc but mostly that the heart is under stress and failing. Boy did I become scared!
Seeing Cardiologist very soon and hoping he doesn’t suggest an op!!! I don’t think he will at all really, but the thought lingers at the edge of my mind! Our beautiful home is up for sale and I am so wry very sad to be leaving it, but the beautiful sweeping staircase makes me very breathless so … must leave.
Look on rightmove, for a property on Vicarage Road St Agnes and you will see the house and internal photos . It is very handsome.
We had an offer on the first day for the full asking price, but there is a viewing weekend on 8th/9th April so, who knows?
But I have digressed. I wish you well with all my heart dear Emma, I shall keep you in my prayers and in my heart. If you would like to, please pm me at any time. Love Susan xxxxx
Hi Susan
Thank you for your message lovely lady. I’m sorry you’re having such a tough time with your heart related issues….if it’s not one thing its another isn’t it. However, it’s fabulous your ME is somewhat better, thats such a positive. All we can do is work with what we have got isn’t it? I know with my own situation its easy to get frustrated and carried away with the what ifs, especially because I am at home alone a lot of the time with much time for my thoughts to run away with me. But my way of coping is to try and find small blessings each day (such as seeing my nephews lovely face earlier today for a visit).
The Gupta stuff is helping too, because all we can ever do, is take one moment at a time. Sometimes though, it’s all easier said than done isn’t it. There are also many tears, as I’m sure there are with you!
I very much hope your heart situation stabilises soon Teresa. I completely relate to your fear of an operation, I am in the same boat as surgery is also a possibility for me depending on the outcome of my MRI.
Thinking of you,
We’ll get through this Susan…we are tough cookies 😉
Emma x
Oh man Emma, that sucks a big one. The endocrine system is very sensitive and when one area gets off balance, the others will start to sputter as well. I’m sure they will find the root cause very soon.
In my case, I was diagnosed with Adrenal Fatigue after about 2 years of living with crazy symptoms but most of mine were just borderline on mainstream tests so they were ignored by most MD’s. I got better for a while then got much worse…. you know the drill but I’ll just say that adrenal hormones are often overlooked because they can test in a normal range and be totally effed up. Even the good, sensitive saliva ASI tests can miss it. My last ASI about 7 months before my worst collapse when I was feeling rather shitty, showed almost a normal adrenal pattern. 7 months later I was almost in an adrenal crisis (I was too sick to test but I pulled out of it by taking cortisol).
Because of my adrenals and my HPA being out of synch, almost every other hormonal system was out of balance. I was told 5 years ago that I was suffering from premature menopause. I wasn’t. Most people with AF also have thyroid dysfunction as well as many other issues.
I’m not trying to throw my diagnosis down your throat, just wanted to put it out there because it is treatable and it’s often the first point where things in the endocrine system start to topple.
You have my continued love and support as you and your doctors work to solve your own unique puzzle. Hang in there and know that your sharing helps all of us to feel more human but also inspired because you do this with such grace and courage. You are incredible.
XXX
Love,
Teresa
Hi Lovely Teresa.
Thanks ever so much for sharing your experience and wisdom. It is valued a lot!
The endocrine system is complex isn’t it, like you say, one thing has a knock on affect on the other. Many years ago I did have an adrenal ASI test (the first time round with ME – so about ten years ago?) and I was in the Stage 3 Adrenal exhaustion phase. However, the past couple of years myself and my herbalist have done a lot of work on healing the adrenals specifically and I actually did an ASI before christmas and it came back ok. (Having said that I was convinced my test results had got mixed up because I am sure my adrenals are affected!) I am however, having more tests done at the hospital this week, and some are on my adrenals. So we shall see what comes back. I have strong feeling this current situation is mainly Pituitary / Thyroid related, but we shall see. So many different things are showing up so all I can do is take it one step at a time.
It can be frightening knowing who to trust can’t it? But I have a fairly good feeling about my current endocrinologist….in comparison to past doctors at least! I am very much feeling my way with it, and as always, will be using my intuition a lot as I go through all of this.
Hoping it will lead to unravelling more of the answers that will ultimately lead me to feeling healthier.
What a journey eh?
Hope things are as okay as possible with you my love,
Thanks for your continued support and love where the blog and my journey is concerned.
Big hug x x
Emma. Good luck on your continued journey to find some answers. What a roller coaster ride! One that I know you would prefer to get off. Thank you for sharing your blog. I understand more about what is going on with you and just want you to know I am thinking of you.
I will share that when I had a severe relapse of my CFS/ME from 2013-2014 it came on in ways that I had never experienced CFS before and continued changing and getting worse and worse and no one not even me thought it could be CFS as I had never experienced it in that way ever before in the 18 years that I had already dealt with it. It took 6 or more months of heavy deterioration and bizarre/frightening symptoms and many Dr. apt/s and E.R. rushes, MRI’s tests. CAT scans, blood work….my Dr. thought I was having a stroke in her office when I fell of the chair and could not respond…another 911 call! (I lost a ton of weight, lost a lot of hair, got psoriasis like symptoms, loss the use of my leg and jaw one night..they just froze up on me… starting having seizures, fatigue beyond imagination just to name a few of the things that came on with the relapse.
Seriously Emma that was my experience that actually brought me to the Gupta Programme in desperation once all the “ologists” could not figure out what was going on although they knew something was very wrong. I eventually came to the realization that OH CRAP I’m in a very deep pit now and what I am actually experiencing is a VERY BAD M.E. relapse and I have to get myself out AGAIN. I am not saying that you are having the same issue. I hope you get the answers you need to move forward again. I feel your pain. Your are such a sweet heart and I wish the best for you always. Much love. xxxxxx
Hi Louise,
Thank you for your lovely words and thoughts, it’s really appreciated. I’m so sorry you have been through such awful health challenges and scary times yourself. One of the worst things is when the Doctors don’t even know what on earth is wrong isn’t it? When they know something serious is happening in our bodies, but don’t know the path to take in terms of ‘fixing’ anything.
My relapse in 2010 was severe, similar to how you describe your severe relapse really. So terrifying. Sometimes it is ‘just’ a very bad ME relapse, and who knows, this could be whats happening now with me right now but in a different way than to times before? It is just that I have concrete evidence (many blood tests) that stuff is going on with my pituitary function and my Thyroid is underachieve amongst other things, so in a way, it is unlikely that it’s just ME this time. I’m following my gut instinct massively too….and it just feels different right now.
I’m still applying all my healing tools and have the belief that the body has an innate desire to heal, always. My meditation and all the things I’ve learned over the past few years are getting me through whilst I have the tests needed to explore whats actually going on and I find out what treatment path I need to take.
Lots of love to you Louise, really hope things are improving, even a little, for you health wise.
Emma x
Sending you so much empathy, love and HUGE HUGS Emma. May your strength of spirit, your brave and loving heart, and your beautiful soul carry you through – and yes – always with the realness and beauty that shines from you. And that we all admire and love. I do, very much so – that you are so very real and very you! xx Don’t ever change – realness and truth and your authenticity are so very beautiful. And it reaches, touches and speaks for many. You give permission for others to be real with you in their struggles too. Really feeling for you, with you in spirit and in thoughts and sending you loads of love.
XX Katie
Katie,
Thank you so much for your loving words and support. As with your own writings and sharing of your journey, I feel I can’t be anything other than the authentic me! So many blogs are either about the depths of suffering and despair, or about full healing and constant positivity. I try to strike a balance between the reality of struggles and life’s challenges, (which includes the sharing of pain) but also within my writing is the sharing of joy, hope and faith. Its life! In all its colours!
Love to you too Katie
You’re an inspiration (to me and many others!)
Emma x
So happy I came across your blog!!!
I am reading through all your posts but this one grabbed me because I also have pituitory “stuff” going on. I have a prolactinoma and although I have never been as bad as it seems you were have all the CFS and Epstein Barr history too. Still trying to find what works for me!
Hi Renee! I’m glad you came across my blog too! So sorry to hear you are also on the journey of untangling all the endocrine/pituitary stuff too, its complex isn’t it? Sending a big hug. Emma x
Hi Emma, I am so sorry you are having to deal with this! I am most interested in what your test ultimately show, will they be doing a brain MRI? I also have sporatic elevated prolactin and low tsh….I have fibromyalgia and chronic fatigue ever since I had mononucleosis in my teens..
My MRI shows a “possible” prolactinoma, but not conclusive…
I hope you get some answers 🙂
x Melissa
Hi Melissa
I will be writing a blog post soon on the latest discoveries. It is all quite complex and I’ve been just trying to get my own head around it all before sharing on here! You and I have some similarities in that I too have had CFS since having mono as a teen. (It seems to be the trigger for so many people doesn’t it?)
Thanks for taking the time to comment 🙂
Emma x