As you drift through my thoughts and experiences with Thyroid and other related health issues you may see a glimpse of your own life in the following reflections and feelings.
Having a Thyroid condition for most is a journey not a cruise. My journey travels through a valley with its twists – turns - ups and downs, sometimes pleasing, other times raw and rugged, constantly changing. I remember talking to a nurse in hospital about thyroid disorders and she simply but meaningfully said, “The little gland with a big job”. I have found too many doctors simply see thyroid disorders as simply non-life threatening. Not meaningfully seeing the devastating effect the “little gland” has on people’s longevity and quality of life.
Realistically we are individuals and deserve to be treated as such, not being pigeon holed as a part of the populous, but to find the right balance of thyroid and related health care treatment. This is not a condemnation of the medical profession, it is a wakeup call. To that, every medical thyroid consultation should be treated as personal professional support for the individual. This is not always the case as I have found.
Lessons in life have taught me that…..Trust has to be earnt, this applies across the board and especially with medical professionals predominating our lives with their diagnoses and treatment regimes. I have also found the interaction and importance of family and friends in helping to keep relationships and friendships intact, through the sometimes long and sensitive issue of thyroid health care.
A lot of us walk around feeling tired, run down and exhausted a lot of the time, often relying on various stimulants to make it through the day. One thing that is certain is that we individuals don't suffer from a caffeine deficiency. In fact there is something dysfunctional or out of balance with our internal biochemistry, having multiple vague and/or diffuse symptoms for a long duration of time. Unfortunately not always being able to arrive at an adequate explanation through conventional approaches and the diagnostics to get a better grasp on understanding the biochemical imbalances that apply to all thyroid conditions.
I am diagnosed as Hypothyroid with other health issues developed pre and post diagnoses that have contributed to and resulted in the way I am today. I have also been diagnosed at different times in life with: CFS/ FMS - Glandular Fever - Viral Meningitis - Kidney Disease – Migraines - Auto Immune - Hashimoto’s - Heart Disease.
Some of the above are associated with and as a result of thyroid dysfunction, never mentioned or investigated, only symptoms treated for a period of over 30 years by two primary GP’s and other health care professionals.
Reflect on a recent visit to your GP or specialist and if they said as you were leaving “do you have any questions?” You most likely said no, unless you have a good doctor forth coming with additional information. My experience with GP’s these days is that the ‘General’ in GP is a little too ‘General.’ When you leave a medical consultation you should feel it was worth the time and money, if you don’t, then the medical professional hasn’t done their job. This is not a condemnation of the medical profession. It is a wakeup call.
That brings me up to 2003 when diagnosed with Hashimoto’s to 2005 when the fun really started. How can a GP tell from a basic TSH/T4 blood test where there are no visible signs or obvious symptoms to guide them, if you have Hashimoto’s, Hypothyroidism, or Hyperthyroidism. Most call it all Hashimoto’s? The answer is in your medical history (that is all in online files now days), how you feel, symptoms you have presented in the past, and by joining the dots. This is old school medical teaching, or in the case of thyroid issues, the lack of teaching actually.
After three months on a low dose of Oroxine and health regressing, you know it's the same ol’ same ol’, I was talking to my chemist who told me about a GP who knew a lot relating to thyroid disease. I made an appointment to see him. I thought he must be good because he was in the specialise precinct of town….No!.... He took me off the Oroxine and I was convinced to take only desiccated thyroid, containing T3, twice a day for a month. After two weeks my body was so assertive in telling me it wasn’t at all happy. It wasn’t the T3 that was the problem, it was the excessive amount, I later learnt. Going back to my original GP and joining a few dots for him, he requested a blood test. He said it was too soon, but I presented a good case and was so unwell, so he ordered it anyway. My T3 wasn’t over the range, but off the page, T4 barely existent just on the page. It took an anguishing month to come down and another two months to stabilise with adjustments. It was no coincidence my original doctor who never did any thyroid blood testing, all of a sudden knew what to do. “Not happy Peter”.
While researching one night I discovered what is now called integrative medicine and a GP on the other side of town who was studding thyroid health, as well he had published papers on the subject. This GP earnt my trust and became my thyroid specialist between 2005 – 2008. In this time we did and tried so much, from different combinations of thyroid hormone and therapies, to very extensive and expensive bloods tests that comprehensively analysed over 150 pathology tests. I gleaned a wealth of knowledge from this GP that I still share today. Keeping a diary of pathology reports, colour coded, to see at a glance how I was feeling at the time bloods were taken became an asset. Use time wisely don’t procrastinate. We discovered my thyroid problems were compounded by coefficient CFS/FMS, as well as, hindrance at the cellular level. My thyroid health became a contributing factor to ongoing unexplained health issues that years later resulted in a severe heart attack and heart failure.
A mile stone I had not intended nearly become a grave stone. 13 April 2011 8.00 am, I dialled 000 for an ambulance. With little warning and symptoms masked by fibromyalgia, lying on the bed succumbed in perspiration, I was having a severe heart attack……. Fifteen minutes after arriving in hospital there was heart failure. Two weeks later out of hospital, painfully managing three stents and a double bypass, my life wasn’t to be in the fast lane any more. That said …… The tank was excreting life and I needed to have time off from strenuous activities and all the years of thyroid support, as well as other aspects of my life necessary for self-preservation. Now I am faced with another problem Heart medications are compounding Thyroid health, fatigue is a side effect of some heart medication but it has to be taken. With three debilitating concurrent medical conditions, what’s a little more fatigue anyway……? Taking into account my previous medical history my cardiac specialist suggested to me it wasn’t a matter of if, but a matter of when. CFS/FMS and hypothyroidism have a cross over but more research is needed to identify where and how. One theory going around is that it could all be an issue with autoimmunity.
In recent years Integrative Medicine has progressed as a main stream science. These medical practitioners are up to speed with what works for the individual. Hormone Replacement Therapy (HRT) with diet and life style changes can be of benefit though, not to the exclusion of professional medical care.
The area I feel that is most likely to be a troublesome or contentious issue to thyroid patients, is the ability to communicate with medical professionals, who may or may not be up to speed with the development of a large range of underlying health issues, contributed to a thyroid condition. Doctor patient relationships are a two way street. Doctors can be more flexible in adopting better social skills and understanding of their patients overall thyroid conditions, not only for a few minutes during consultations.
If I was asked to say one thing that has impacted me over 18 years of Thyroid research and support, it would be this: As patients we need to take the pressure off ourselves by preparing for our consultations and documenting our symptoms and health concerns in more detail. Rely purely on memory, we could find that we may be under intimidation due to the lack of time and memory recall. Doing this we can communicate clearly with our medical professionals in a language they understand.
Ten years on…..2021 Still here and still doing all I can with thyroid research and support.
If this insight into my journey has spoken to you in some way then I have done my job.
Take care and stay on top of your health…. All my best wishes - Rick
Thyroid Australia (Brisbane) Network