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10 Important Lessons I Learned on My Journey with Thyroid Disease

Paul Robinson - Thyroid Patient Advocate

Guest Post from Paul Robinson

Hi, my name is Paul Robinson, I live in the UK and I am a thyroid patient advocate.

I have been doing this work for well over 10 years.

As a preface to this blog post I need to say something about my own story for those that do not know my work.

I was diagnosed with hypothyroidism (Hashimoto’s) when I was about 30 years of age. Over the following 7 years I was bounced around from one doctor to another, from one endocrinologist to another. I was put on Levothyroxine (Synthroid) at various doses. I was tried with natural desiccated thyroid at various doses, then T4/T3 combos. I was even given some of these medications with hydrocortisone, as I had developed severe low cortisol also. In all cases I was pronounced ‘correctly treated’ because my lab tests were apparently normal. Yet, I had all the symptoms that I began with.

It got to a point where the doctors were no longer interested and they even had the rudeness to say that something else was now causing all the same symptoms but it was no longer hypothyroidism! By this stage the disease had wreaked havoc on my body. The low cortisol alone had caused me to lose about 35% of my body weight. I was so fatigued I was virtually an invalid. I also lost the career that I loved. Sadly, various relationships were also damaged. I can only hint at how bad some of this was here.

I took matters into my own hands after about 7 years. The Internet was only just starting, so I bought endocrinology books – a lot of them. I taught myself. I’m a scientist in background and it was not that hard. I learned and I knew it was hypothyroidism still causing my symptoms. Something had altered in my body and I felt sure that I needed more T3 and less T4, so as not to rely on conversion of the T4 into the active form (T3).

The bottom line is that after about 10 years had elapsed I was on T3-only with no T4 component. I had also found a novel way to regulate cortisol using the T3 and it worked. I began to recover. I had been so ill for so long that full recovery took a few more years as I had to build myself up and get fit again.

As a result of all of this I have written 3 books which cover many aspects of thyroid diagnosis and treatment: ‘Recovering with T3‘, ‘The CT3M Handbook‘ and ‘The Thyroid Patient’s Manual‘. I also now fully understand what had happened to me and why I did not respond to any of the other thyroid medications. Perhaps that can be for a future blog post though.

I am now 60 years of age and have been living well on T3-only for 20 of these. I am fit and healthy, with no signs of either hypothyroidism or hyperthyroidism.

When I was asked to do this guest blog I wondered what I could write about. I post a lot on my website and Facebook page. Much of what I do is about certain technical or research topics that I think would be of interest to readers, but given I might be read by people that don’t know me at all, I thought something of more general interest might be good.

I was mulling this over and thought it might be worth putting down some of the main lessons that I learned throughout my own journey.

  • 1. Don’t believe all you are told by doctors OR other patients. This includes diagnosis, thyroid laboratory test interpretation, vitamin and mineral levels and whether they are okay or not. Yes, take it on board, but always check things out if there is the slightest doubt OR it is easy to verify. There are so many thyroid forums that exist these days. It is possible to get bad advice on these too. Take all views on board but do not just believe everything you are told.
  • 2. Always get copies of all test results – with the actual result numbers, the reference ranges and the units measured in. Frequently, you need to check if what you are being told about these results is actually correct or not. Insist on getting the actual results – not a statement that they were okay. They are often useful later on when you are trying to work out what happened at what point in your illness. Results often vary a lot depending on what treatment you are on at the time of the lab test, so this will become part of the chronological history of your diagnosis and treatment progression. Because of this, please do make a note of what exact thyroid medication, doses you were on for the lab testing. Note the timing of your thyroid medication as this can influence the test results at the time of the blood draw. Note down any other supplements or medication you were taking at the time. This information can end up being invaluable to you and your doctor at a later time.
    Learn more about organizing your thyroid records here.
  • 3. Do your own research. Read books. Use my books and website and other peoples’ resources as references.
  • 4. Knowledge is critical – so gain it as FAST as you can. Knowledge allows you to gain some control of the situation vs feeling like you are on a raft, adrift on a stormy sea. Gaining more control gives you the ability to make better decisions and to ask better questions of your doctor(s). Getting knowledge FAST means you have a better chance to get well FAST. Getting well quickly is the best way to avoid the kind of damage and havoc that this disease can causes when it is not properly treated. A speedy recovery is the best way to avoid career damage, relationship damage and other related health issues from developing.
  • 5. Do not stay with a doctor who is not supporting you. That is a recipe for staying sick. There are usually solutions. You really need to have a good working relationship with your doctor, so that you know they are actually listening to you and understand how you are feeling. You also need to feel that they are doing their very best for you. It is hard enough recovering from hypothyroidism without feeling like your doctor is letting you down.
    Here are a few resources for locating a knowledgeable thyroid doctor.
  • 6. Never just turn your health over to someone else. You need to remain in the driver’s seat to a certain extent. It is your body and you need to own it and look after it during your return to good health. If you are not happy with the opinions or treatment you are receiving from your doctor, do not just accept it.
  • 7. Never, ever, give up!
  • 8. Never, ever, give up! I cannot say this often enough. It is so important. Sometimes it can be a huge struggle to get well, given the relatively poor diagnosis and treatment policies that seem to exist for thyroid patients these days.

The next two are suggestions rather than lessons:

  • 9. Read ‘The Thyroid Patient’s Manual’. I wrote it to help people gain knowledge quickly, and to enable them to see the entire picture of the thyroid hormones in the context of other systems in the body. I wanted to give all the key information related to diagnosis and treatment, especially since so much new research has been done over recent years. The goal of the book is to help people recover FAST – before too much damage occurs in their lives.
  • 10. Read ‘Recovering with T3‘ and ‘The CT3M Handbook if you need to use T3. Having the knowledge to correctly use T3 is critical if you are one of the few who has to go this route.

I hope these lessons help you avoid under-treated thyroid disease.

Best wishes,
Paul

About the Author

Paul Robinson, Recovering with T3

Thyroid Patient Advocate

Paul Robinson is a thyroid patient who became ill with hypothyroidism in his late twenties. He is now sixty, has written 3 books (‘Recovering with T3‘, ‘The CT3M Handbook‘ and ‘The Thyroid Patient’s Manual‘) and has accumulated a wealth of knowledge on thyroid and adrenal dysfunction. You can find out about his books on his website.

Paul’s most recent book ‘The Thyroid Patient’s Manual’ covers all types of thyroid medications (T4, T4/T3, NDT and T3) and includes recent research findings. It will help any patient, with suspected or diagnosed thyroid disease, or if their treatment isn’t working.

In addition to his website, you can follow Paul on Facebook, Twitter, and YouTube.

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LYN Estka
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LYN Estka

Paul, you are a great leader in this fight. I too have been battling for far too many years and still suffer the symptoms. Been on synthroid forever. Finally I have a doc who thinks maybe cytomel may help and changed me to a different med synthroxine yesterday. I am hopeful once again, that maybe this time…I can level things off. T3 and T4 are normal range, TSH is still quite high…….no wonder I cannot loose an ounce :)

Paul Robinson
Guest

Hi Lyn, having an empathetic and supportive doctor is a tremendous asset. We know that simply having FT3 and FT4 in range is no guarantee of being well. The ranges are wide population ranges, which have been created from blood samples that often include TSH normal, treated thyroid patients. Thyroid patient labs are different to healthy peoples labs and it tends to make the population ranges lower for FT3 (both the top of the range and the bottom) than a totally healthy population. FT4 tends to be higher (as it doesn’t get converted to FT3 as well in thyroid patients… Read more »

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