This is hard to write
I started this post in March this year whilst I was in the middle of a thyroid flair, I found it so hard to write as I was feeling so low that I stopped halfway through, every time I tried to write I’d end up in tears. I’ve revisited it a couple of times but still struggled to write what I feel. I really wanted to finish it because I feel it is so important and one of the areas of my health I discuss the least, its the area I try the hardest to mask. Below (in italics) is what I wrote in March.
This is a hard one to write and I’m sure it might not make comfortable reading either but its a major part of my illness and the one part of it I struggle with the most.
After 3 months of feeling really good after starting taking LDN (Low Dose Naltrexone), things have taken a turn for the worse. I’ve had a thyroid flare, which wasn’t exactly unexpected as the LDN works to modulate your immune system and I was aware that it could cause my thyroid medications to need adjusting as it does this, but I was expecting it to need a reduction in medication as my thyroid went towards a hyper state not to need an increase as it went in to a hypo state! So I was on the look out for hyper symptoms not hypo symptoms. That was my first mistake, my second was ignoring the symptoms that were slowly starting to occur and dismissing them as due to physically doing more than I’ve been able to in years, being stressed and actually having a social life for once among other things.
So what are my hypo symptoms and why did I not recognise them straight away?
- Cold hands and feet (to the point of pain)
- Needing to Sleep more
- Muscle pain and weakness
- Joint pain
- Lack of coordination
- Memory problems
- Difficulty processing my thoughts and speech
- Feeling irritable and anxious
- Blurred vision
- Weight gain
- Hairloss, dry brittle hair, skin and nails
- Sore throat
- Loss of appetite
- Decreased libido
- Digestive slowness, bloating, pain and constipation
These are just some of the symptoms and not everyone’s experience is the same so I can only speak for how it affects me. For me the start of the symptoms start with an increasing level of fatigue, which is easy to put down to overdoing things, the winter is very busy for us in the Alps, everyone is busy so who isn’t tired at this time of the year!
This is then followed by cold hands and feet but it starts intermittently and gets gradually worse until its there constantly and is causing pain so at the start its easy to put it down to the external temperature being below zero, its winter of course I’m cold!
I start to become irritable and jumpy, which again is normal when you’re tired so its easy to ignore at the start. The muscle pain, weakness and breathlessness again are gradual so you don’t notice it until its pretty bad and your struggling to walk properly.
The digestive symptoms start slowly and as I am sensitive to so many foods its easy to start examining what you’ve eaten to see if something has inadvertently been contaminated (especially if you’ve been eating out at all). The weight gain is slow so again its not instantly obvious although the loss of appetite should be a little more obvious.
Its a bit of a kick in the teeth to lose your appetite and to gain weight! You can probably see a pattern here without me explaining every symptom, they start slow and intermittently so individually its easy to miss what is happening until you start to put all the symptoms together.
But for me the tipping point comes when the depression hits. Again this is a slow process, but it’ll start out with the irritability and jumpiness that I mentioned earlier and progresses into irrationality, inability to cope with the slightest change in plans or things going wrong, followed by huge mood swings and feeling a little down.
At this point this quickly progresses into a constant overwhelming feeling of sadness, lack of motivation for even the most mundane things. This is followed by what I call the blankness, which scares the shit out of me! Its a feeling or should I say a lack of feeling, any feeling. You know you should feel something but there is nothing just an empty space, the situation often seems hopeless and is underlined by thoughts of whats the point, if this is what living with this illness is going to be like do I want to live the next 40 years like this.
Suicidal ideation often occurs throughout this period and it is quite scary to have thoughts like this in your head, even if you know you won’t act upon them. It is not living its existing. Its easy to see on a good day that things might be better the next day or week, but prior to starting the LDN and changing my diet I felt like this a lot, my thyroid flared at least twice a year (usually from winter into spring and then again at autumn to winter time), and if it can take roughly a minimum of 6 weeks for the symptoms to reach a point where its obvious what is happening before changing my dose and then another 6 weeks for it to get back to what it was before, thats 3 months gone and if thats just twice a year thats half the year feeling this way. Luckily thanks to the changes I’ve made it now generally only happens once a year in winter.
Just as the symptoms creep up on you, when you realise what is happening and you adjust your medication accordingly it can be just as slow for the medication to take effect and for the symptoms to subside. So it can be months feeling like this, which is particularly unpleasant.
Looking Back With Hindsight
The one area that I failed to consider whilst in the midst of my flair was a pattern I’ve since noticed thanks to a blog I read regarding how the winter months affect your thyroid. Basically when the temperature drops your body has to work much harder to keep you warm and functioning, it needs to produce extra energy to do this. Your thyroid is a major component of energy metabolism and when it doesn’t function properly you will likely struggle to cope with the changing temperature without a medication adjustment.
After requesting further testing in April when my dosage change seemed to be taking a particularly long time to improve my symptoms, it became obvious that whilst I was getting sufficient thyroid medication, my body was struggling to convert the T4 medication in the active T3 hormone that our body needs, so I switched to a combination T4/T3 medication which has helped hugely.
The cold temperatures are compounded for me by living at altitude too, which is also harder on the body. Sunlight exposure is much less and my Vitamin D level drops into deficiency range, this a major factor for those with autoimmune disease, research has shown that those with autoimmune disease have less symptoms and flares when there Vitamin D levels are at optimal levels.
In fact there is a direct correlation with the rise in autoimmune disease the further away you live from the equator and vice versa. All this explains why I feel better in the summer when I live and work at sea level (not that this doesn’t come without its own issues, such as heat intolerance) and why my health drops off in the winter back at altitude in the cold temperatures.
Learning From Experience
Its been 7 years since I was diagnosed and every winter this has happened. It has become so bad at points that we have considered moving to a climate that is more moderate all year round. At the moment this is not an option thanks to the uncertainty of Brexit, yes I know politics, bleurgh. But the fact is whichever way you voted (if you did) it makes life more complex for us right now and all the options and rights we had before are now not guaranteed, so a move is off the table.
As a result of this I’ve come to a decision that I will be doubling my vitamin D supplement dosage and adjusting my medication come next month in the hopes that I can pre-empt a winter flare or at least the worst of it hopefully. I’ve also bought a SAD lamp to help with light level exposure to hopefully help boost my mood. I have also re-committed to meditation, I’m not very good at this, I do it for awhile and then stop for ages. And I’ve just started doing a little Qi Gong. Every little helps right! Lets hope so!!
A Message To My Friends!
To those friends I don’t see for weeks or months on end in the winter months this is why. Its not that I don’t want to socialise or that I’m uninterested in your life. I’m usually just struggling to cope with this shitty illness.
Why do we find it so hard to talk about mental health? I have plenty of friends who would happily listen to me when I feel like this, friends who have already offered. Yet I still don’t pick up the phone. I’d say its more not wanting to offload onto others than thinking they won’t want to help that stops me. After all how can I explain why I’m crying uncontrollably or why I feel so depressed or hopeless if I don’t even know why, it just is. It is so easy to isolate yourself when you feel like this.
So as well as all the physical things I am changing I’m also going to try to reach out more, to go out, to speak to people or even to message friends more often. Feel free to hold me to this if I’ve turned into a hermit again!
Taking Back Control
The seasonal work we do seems unsustainable to me for my health as from week to week my workload can go from nothing to unmanageable, this undoubtedly does not help as my thyroid cannot adapt to this like it would if it functioned correctly, and the medication is slow acting so you can’t just take extra if you know you’ll be doing more.
So in September I started to retrain to become a Nutrition and Health Coach and then hopefully a Nutritional Therapist, the idea is to find ways in which I can improve my health yet further and then eventually to be able to help others do the same. This was a hard decision for me as the course runs through the winter when I’m usually at my worst and I didn’t know if I would be able to manage this on top of my usual workload. But something needs to change so I’m hoping it all works out. In the 3 months I’ve been doing it I’ve learnt so much and I’m loving it, hopefully I’ll be able to share some of the stuff I’ve learned and not take 8 months to write my next post!
I’d love to hear any techniques you use to cope with chronic health & mental health conditions and the positive things you’re doing to change your life.