Scotland - where it's at.

This week I would like to dedicate my post to the ladies behind the Scottish Thyroid Petition (PE01463).

I read a lot of stuff online. Only on days when baby is asleep and my chores are done (or mostly done)(or waiting to be done). Through all the thyroid support group pages and forum chat there is one stark fact that keeps coming up, it simply cannot be ignored. People are not responding well to T4 only treatment.

I say people, I don’t know how many people exactly, I can’t give you a percentage (*perhaps I will do some research after the post is written – the proper way to blog yeah? The answer will be at the bottom of the page, if I find it….) but it is entirely apparent that for a lot of people T4 thyroid ‘therapy’ does not cut it alone.

There seems to be 2 schools of thought on why this is:

1. The medical profession is of the opinion that if the T4 does not work then either your dosage is not optimal or it is not your thyroid causing the problem (anti-depressants anyone?)

2. The affected patients feel that the T4 does not work because the hormones are not completing the process they were intended to. By this I mean that the T4 runs through the body telling pituitary to stop secreting as much TSH, showing blood tests with reduced TSH for the docs to be happy, but the loop has not yet concluded. T4 should be converting to T3, the mojo magic energizer that we all need, but it is not. 

And this is where we are all largely in a grey area. What happens if your problem is that your body does not convert this T4 into T3?

Well, not an awful lot if you speak to my GP and endocrinologist. And it seems that this is the case with the majority of patients that are online too. It is as if the policy maker for treating hypothyroid patients missed the lecture on hormone conversion and no one else was paying attention so policy states that Levothyroxine is the only way to treat primary hypothyroidism.

Oh dear. 

Now, while I fully believe in a holistic approach to health care I respect that not everyone does - but this does not mean they should be subjected to second rate care.

I can honestly say that I feel amazing now that I am taking the medications I need to help my body run well, and I wonder of the worlds health organisations: “Why ruin the lives of thousands who feel at their lowest every day because of poor to non-existent treatment for this illness?” No doubt the answer would come back with the same lines hypothyroid patients have been hearing for years: Low energy? ME, chronic fatigue, depression. Painful joints? Fibromyalgia, or ME. Low mood the same. Dry skin, constipation, poor immunity all entirely unrelated to your pre-existing thyroid condition. We have lotions and potions to cover just about everything....

It is truly a lonely battle when no one will listen to you.

But there is a glimmer of hope and the hypothyroid world is looking on with high hopes.

Earlier this month in our very own bonnie Scotland, 2 women (with a 3rd who was unable to attend) went into the Scottish Parliament and lodged a petition. The aim of this petition is to get adequate testing and treatment of thyroid disorders including T3 levels in bloods, T3 therapy, adrenal checks as well as vitamin and mineral level checks. It is a huge step forward for this community and we will wait and watch with baited breath for updates. You can view the video of this event here.

So, now you know where it's at. And you know what you can do, spread the word. Drop into their facebook for a look and see what the latest developments are: http://www.facebook.com/scottishthyroidpetition

If you want to help, why not write to petitions@scottish.parliament.uk with your own experience on diagnosis and treatment (or lack thereof).

And of course don’t forget to stop by my page too, go on - say hello!! http://www.facebook.com/MyThyroidTherapy

Stay well folks.

*P.S The petition actually answered my earlier question – a Swedish study has found that 70% of patients are not symptom free on T4 therapy only. That is a poor record indeed and entirely unacceptable...in my opinion....

Underestimate at your peril

In my last post I suggested that an underactive thyroid is both misunderstood and underestimated and so here I want to continue with that thought and explain how I underestimated the control this gland has over the entire body.

Basically I thought that swallowing that little 'levo' pill each day would serve me well and adequately treat my newly diagnosed underactive thyroid. As much as I didn’t want to become one of ‘those people’ who are stuck on meds forever (surely a practice reserved for the elderly and really unwell?) I decided to do as I was told for once and get on with the pill popping. Well, I did. And it didn’t get me very far. I had just walked into the trap, swallowed more than the pill and underestimated the illness. 

So my body was getting weak, my mind was failing me, my health was deteriorating. The pills were not working and the consultant told me that these things had nothing to do with my thyroid. And I believed her. That is, until I found out the truth.

I found out that every system in your body is affected by your thyroid hormones. Your immune system, digestive system, metabolism, skin, internal organs, nails and hair, reproductive system…….I had discovered that thyroid hormone is found, and plays an active part in every cell in your body.

And that still blows my mind, all of this activity is going on at a cellular level. I mean I did biology at school and I remember cells. I know they have a nucleus and mitochondria, among other things, but they were all drawings, funny shapes in text books, nothing tangible or even relevant to me. Yet here I am with an illness that is very tangible and it is because of what is happening, or not happening, within those cells. 

But that was just the start of my misunderstanding of this ‘invisible’ illness. Looking deeper into things I found out about some all too real links to heart disease, osteoporosis and poor mental health among other things. These are very serious illnesses and I don't mention them lightheartedly. I feel it is important to highlight that these may be brought on by not looking after a dysfunctional thyroid.

So please believe me when I say that the biggest favour you will do for yourself is to ensure your thyroid is working optimally. Take the hormones you need in order to feel well, and I don’t mean just feel better but feel WELL. Eat foods that will help and not hinder your thyroid. Live an active life that does not include that endocrine disaster, running. Find medical and nutritional support. But above all, do not underestimate the power of the gland!

 

www.facebook.com/MyThyroidTherapy

There's been a misunderstanding...

I spoke with an old friend yesterday, our chat was long overdue because I am rubbish at picking up the phone and calling friends (slapping self on wrists). During the course of our conversation she asked how I was getting on with my thyroid. She really is a lovely person so this was no surprise in itself, but what struck me was the level of genuine concern about my wellbeing whilst dealing with an underactive thyroid. Now, I have to say all of my friends are very supportive of the lifestyle changes I have implemented to help my thyroid but I can’t help get the feeling when speaking to others that thyroid disorders are pretty well misunderstood and largely underestimated.

Let's start with misunderstanding first of all because I think it applies to those suffering from thyroid problems as much as the rest of the population. I mean, out of everyone we should understand this affliction the most - right?

Those of us who are lucky enough to have been given a diagnosis are being told that taking a pill every day for the rest of our life will sort everything out and get us back to good health. We are told this pill is an exact match of the hormone that your thyroid gland secretes so there are no side effects. But the misunderstanding has already started here. The doctors have only partially explained the treatment and this leads to a misunderstanding for the patient (you and me). When we take the tablets and don’t get better we go back to the doctors and are told that it can’t be the thyroid (our bloods are looking ok) so it must be something else. Maybe you are just suffering from depression? Accompanied with IBS? And even chronic fatigue? We can give you tablets for all of those things. (Waaaaaaa STOP NOW PLEASE)

Another misunderstanding comes from the whole eat less/lose weight battle that most of us are fighting. You will be aware that low thyroid function tends to come hand in hand with a slower metabolic rate. And with a slow metabolic rate comes low energy, and with low energy you tend to have inefficient calorie burn.  A triple whammy that helps make up one very vicious cycle. It is not just a case of greed or laziness as is often preceived. (Well, not always anyway). But don't let this make you complacent. It helps to remember that you need to be healthy to lose weight, you don't lose weight to be healthy. That is why I am trying to get my treatment right, speed up my metabolism and slowly build exercise back into my life.... gently.

I do feel strongly about this. We need everyone to be aware of these thyroid misunderstandings. We must work hard to help people recognise the symptoms as well as learn how to control them. I want everyone to feel empowered to optimise their treatment and follow a pro-thyroid diet and lifestyle because next up comes underestimation of how serious this illness can get. And that, my friends, is scary.

www.facebook.com/MyThyroidTherapy