Symptoms of Hypothyroidism

Sleep has always been an important part of my life, and I’ve been able to sleep in some pretty spectacular situations – from a sun-warmed stone on a mountain top to the bouncing bow of a boat in the cold, driving rain. In hindsight, my ability  – or need- to nod off was probably a symptom of my thyroid disease.

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Recently I have met a lot of people with hypothyroidism, or suspect they have it despite their blood work being normal. Many of these people have a long list of symptoms that they have never associated with their thyroid condition and have lived with them for years. They are are used to feeling less than optimal and easily put these, often non-specific, symptoms down to age or lack of sleep.

But what if you could feel better? What if you could get rid of those aches and pains?  Today I want to give you a more comprehensive list (but by no means exhaustive) of the symptoms you may experience with hypothyroidism – there may be more than you may realise.

Chronic symptoms of hypothyroidism can be reduced or eliminated through changes in eating habits and lifestyle.

I’m walking proof of this. I have gone from being bedridden, aching all over and barely able to move to, on the whole, being fully functional!  I still get the odd flare-up, but there is usually a clear cause, such as over working, catching a horrible bug or letting my sugar consumption creep up. When this happens I know I have to go back to basics and “Reboot“, to get back on track. And it works.

If you have hypothyroidism, particularly Hashimoto’s thyroiditis, and suffer from chronic symptoms it’s important you know that they are an indication that your body is not functioning at it’s best. You have those symptoms for a reason.

Masking symptoms with pain killers and supplements without addressing the cause can compromise your long-term health.

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If you have these symptoms please know that you can feel better. It may take time. It may take effort, but it is possible! With no help or guidance from medical doctors as to how to manage my diagnoses (first CFS and then Hashimoto’s thyroiditis), just a prescription for Thyroxine, for a long time I thought I was going to be virtually house-bound for the rest of my life. Thank goodness I took control of my health and made the necessary changes to feel better.

I read and researched. I used my background in Immunology to understand the science behind my disease, then I listened to my body and used my knowledge of nutrition to heal and get as healthy as possible.

Here is a list of some of the symptoms you may have, even if you’re taking thyroxine. How many of these do you have?

  • Palpitations
  • Fatigue
  • Slow speech
  • Slow movements
  • Brain fog/confusion/forgetfulness
  • Liver tenderness
  • Insomnia (yes, even with hypothyroidism)
  • Hypoglycaemia
  • Muscle and joint stiffness
  • Fibromyalgia
  • Pins and needles
  • Puffy, itchy, scratchy eyes
  • Puffy hands and feet
  • Cold extremities/ low basal body temperature
  • Irritable Bowel Syndrome (IBS)
  • Tinnitus/hearing problems
  • Restless legs
  • Hair loss
  • Eczema/ dry skin
  • Migraines
  • Blurred vision
  • Anxiety
  • Mood swings
  • Inability to cope with stress

I had more than 75% of these symptoms and I was misdiagnosed for 5 years. Now I live largely symptom free!

Get in touch to hear how we can work together to improve your health and get rid of your symptoms.

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If you have some of these symptoms and haven’t got a hypothyroidism diagnosis, then it’s advisable to talk to your doctor. These symptoms don’t mean you DO have hypothyroidism and are not meant for diagnostic purposes. If you are at all concerned about your health, then make an appointment to see your doctor.

I am happy to help you make positive dietary and lifestyle changes alongside your medical doctor.

Take control of your health and feel better!

With warmth,

Caroline x

P.S. Have you signed up to my mailing list? Click here for information and offers straight to your inbox, including FREE Pukka Tea when you register for The Reboot!

P.P.S. Interested in health coaching but not sure what to expect? Have  read of THIS page or send me an email HERE.  You can have a FREE Discovery Session with no obligation to sign-up for coaching. Remember, I can coach you no matter where in the world you are!

Waiting

(Caring for Cancer, Part 2)

Read Part 1 “How our Cancer Story Began” HERE

I never realized just how excruciating waiting could be.

We had already waited an agonising two weeks on the query-cancer pathway for the Consultant Oncologist appointment, and we had left with nothing more than the promise of more waiting. We had naively believed that we would walk out of that appointment with at least a possible diagnosis – it was a query-cancer after all, surely that was urgent? Admittedly the oncologist had stated that my husband did not have cancer, and it was only my absolute confidence in my research, plus a little tenacity, that had secured a follow-up appointment. But, still we had to wait.

We waited for the phone call. We waited with no answers, no plan, no control and no idea when we might hear. By now my husband was in chronic pain and, understandably, clung to the possibility that his symptoms were caused by an infection – after all, that was what the Oncologist had said.

My reality was different.

I had read the research papers. I had assimilated the data presented to me. I was convinced he had cancer, probably metastasized. I knew that with every day that passed his chances of a good prognosis reduced. But all we could do was wait.

My sleepless nights continued – full of anxiety, despair, silent tears and newborn comfort. In a strange way these quiet, long nights offered some relief – a private space to release emotions pent-up during the day.

In the day time anxiety, dread and fear plagued me constantly, but some semblance of normality had to continue. I had a three month old to nurse, feed and change, and a perceptive and inquisitive toddler that, quite rightly, demanded my attention. I had to run the house; do the food shopping, plan dinner, put the washing on, tidy up. I had to interact with other people – talk with neighbours, friends, the postman. I had to go through the motions of normal life. I had to keep it all in.

Staying in control of my emotions was hardest with my son. I struggled to be the happy, playful and present Mummy he knew. I struggled because the real me was fracturing and crumbling inside – unraveling in panic that we would be left alone because a diagnosis would come too late. If he caught me off guard, in his innocence and with empathy he would ask “are you sad Mummy?” My mind would gush with the adult out-pouring that I craved, and my heart longed to squeeze him tight in a possessive embrace and to simply sob. Instead, I would pull him close and allow a few tears to roll down my cheeks as he nestled, unaware and protected, into the crook of my neck.

Adding another layer to my anxiety was the constant threat that my husband might leave the country.

With his family overseas, and aware of the American-style of medical care, understandably his patience with the long, bewildering NHS process was reaching its limit. He wanted to fly away and check into a hospital that wouldn’t discharge him until they had uncovered exactly what was wrong, and treated him for it. Family and friends scattered across the globe were making suggestions; Germany, Costa Rica the USA… I had to admit, the idea of a quick diagnosis was giddily tempting, save a few key points:

  1. The kids and I couldn’t go with him. Our daughter, at just 3 months old, didn’t have a passport. There was a chance that if he got on a plane, I would never see him again.
  2. Being his advocate would be significantly harder. Even if I could follow him later with the kids, I was unsure of my ability to be his advocate in an unfamiliar medical system, living in a hotel and possibly operating in a foreign language.
  3. The NHS has a world-class specialist cancer treatment hospital. If the diagnosis was cancer, then the UK was the place to be.

I felt trapped. I selfishly wanted him to stay, but what if that meant everything happened too late? What if by staying it ultimately led to the worst prognosis? How could I stop him from going?

In truth, I couldn’t. Every day or so he would send me flight details and ask my opinion.

If I didn’t want my husband to leave the country, I had to take matters into my own hands. I had to make the NHS work for us – I could no longer wait for the cogs of the NHS to slowly turn on their own.

In and around being Mummy, housewife and nurse to my poorly husband, I contacted the Patient Advice and Liaison Services (PALS). I updated them almost daily with the lack of progress in my husband’s diagnosis. I spent hours on the phone, ringing the abundance of wrong numbers on hospital websites and waiting on hold to finally reach the relevant secretary or other admin person. I chased everything up and followed every possible avenue to check that everything was in place, all the paperwork had been done and the right people explicitly knew our situation.

Just in case all my efforts were in vain, I also organized my daughter’s passport. I gathered all the relevant documents and signatures and managed to get a photograph of my 3 month old looking straight at the camera with eyes open (no mean feat!). I also just about managed to hold it together in the Post Office when I was told they couldn’t accept my application because of a typo – the fear of my husband flying away without us was renewed and amplified. Somehow I managed not to burst into floods of tears as, at the same time, my toddler was having a meltdown near the stick-it notes and my daughter, strapped to my chest, was desperately head butting me for milk, which had by now, glamorously, saturated my breast pads and was trickling down my front.

 

At last, we received the phone call and were given confirmation of the ENT oncology appointment – just a few more agonizing days to wait. Thankfully this was enough progress to quell my husband’s itchy feet.

Midmorning the day before the ENT appointment, the Consultant Oncologist called my husband at home, which in itself seemed odd. Apparently, while showering, the ‘diagnosis’ had occurred to him – a rare and treatable bacterial infection known as ‘Cat Scratch’. He’d already booked blood tests to confirm his suspicion.

My husband was beaming – in an instant our future had gone from looking bleak to no longer being under threat. He wanted to celebrate, and I wanted to join him.

But I couldn’t celebrate.

My hugs and smiles were strained – something wasn’t right. I didn’t believe it was Cat Scratch – I knew it wasn’t Cat Scratch.

Cat scratch had come up as a possibility in my literature search when I first suspected something sinister. I had eliminated it as an option because the symptoms and timeline didn’t quite fit. I had concluded Lymphoma and/or an abdominal tumour. From my research I had concluded cancer and, as always, I trusted my research.

This was not what my husband wanted to hear from me. He was ready to cancel the ENT oncology appointment – after all who was I to diagnose cancer when the oncologist said infection?

Thankfully, he agreed to go to the appointment.

In the waiting room my Mum rocked the pram. I buzzed with nervous anticipation and my husband fidgeted. This had to be the appointment when things moved ahead. Finally we were called in. After a series of examinations and questions, the oncologist paused, looked at his hands then announced that he thought my husband was seriously ill, and that he probably had been for some time. His best guess was Lymphoma.

Wow. The sense of relief was almost overwhelming – at last someone was on the same page as me, now they surely must take quicker action. But relief was quickly replaced by reality and a renewed terror – this was really happening.

He was booked in for a biopsy and finally was given a referral for a CT scan – something I had asked the GP for at the original appointment. But, again we faced weeks of waiting – waiting knowing that the most likely scenario was cancer, but not knowing the severity or prognosis.

Anxiety hit a new level and the waiting became unbearable. I reverted back to what I know best – proactivity, research and data. I organized paperwork and booked CT scans at private clinics (some 6hours drive away) in the hope of expediting diagnostic tests. But perhaps most significantly, I presented the facts of our experience to PALS and pointed out that the Government’s Cancer Pledge is  “A maximum 2 month (62 day) wait from urgent referral for suspected cancer to first treatment for all cancers” – we were on day 65 and looking at a further 14-21days before diagnosis.

The day after I sent that email my husband had a CT scan. Two days later he got a phone call asking him to go to the hospital immediately for a biopsy of his swollen lymph node.

A few days after surgery, my husband attended the blood clinic appointment booked to test the Cat Scratch hypothesis. This was the only appointment I didn’t attend – I had the kids and it was supposed to be a routine blood test. However, unannounced the Consultant Oncologist turned up to the clinic and presented my husband with a diagnosis:

Cancer. Metastasized Germ Cell Carcinoma, including a 7cm mass in his abdomen.

 

Thanks for reading! Let me know what you thought and don’t forget to share with your friends. By sharing my story I hope to encourage others take control of their health and that of their loved ones. 

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How our Cancer story began

It all began one evening just after I had tucked my son into bed and was heading to bed with our 4-week old daughter, ready to nurse her for the umpteenth time to try to shift my mastitis. My husband strode out of the bathroom and presented me with his upper thigh; “does this look normal?”. “No” was my swift and direct response to his question about the golf-ball sized protrusion, followed by “you should definitely get that looked at”.

The GP referred him urgently to the hospital, suspecting an inguinal hernia, which apparently can be quite serious. Once he had an ultrasound it became clear it was a swollen lymph node. Quite swiftly it was decided that the best course of action was to surgically remove it – there and then and under local anesthetic, which they did – and not very delicately.

In the days and weeks afterwards, including over Christmas, he suffered horribly from Lymphedema and nerve damage. Finally, in the New Year, the histology results came back – “Negative for Cancer; Reactive Lymph node”.

Phew – we were relieved, or at least we should have been.

I didn’t feel relieved. I felt restless. The phrase “Reactive Lymph node” kept running through my mind. Why was it reactive? What was it reacting to?

I have a PhD in immunology, and this wasn’t making sense. Why were the doctors not asking questions? Rob had had no signs of infection. No illness, no injury, cut or abrasion – nothing to explain a “Reactive Lymph node”. When we raised these questions, we were told that “in the UK we practice evidence-based medicine” – i.e. doctors don’t go hunting for disease, they wait until it presents itself. In general I think that evidence-based medicine is all well and good, unless the presentation of disease is sat in a jar of formaldehyde in the hospital basement.

A month or so later a lymph node in Rob’s neck, near his collarbone, swelled up. It was a weekend and I was fed up with the lack of action surrounding Rob’s health. This was “evidence” and I was not going to let this one go.

I spent the weekend researching. As I mentioned, I have a biology-based PhD – I am used to using search engines to find relevant scientific and medical research. I am also able to read, interpret and assimilate the information – a skill set I never dreamed I’d use for my husband’s health.

By Sunday lunchtime I had “diagnosed” my husband with Lymphoma and/or a large abdominal tumour, probably metastasized.

I didn’t sleep that night. I knew. I was the only person in the whole world who knew how ill my husband really was.

Fear set in.

First thing Monday morning I booked the earliest doctor’s appointment, dropped my son off at a friend’s house and drove Rob and our daughter to the surgery. In the doctor’s office I sat down, put Sofia on my boob and resolved not to leave until we were given a viable course of action.

Luckily, our GP is a very sensible and intelligent man. I am sure he could detect my fear. He was also perceptive enough to detect the choice phrases and medical terms (that I had memorized the day before) I was using to alert his attention to the seriousness of the situation, without terrifying Rob.

Rob was put on the Cancer-query pathway. In NHS terms this means you get to see a Consultant Oncologist within two weeks. I left the GP’s appointment relieved – thankful that I had been listened to, taken seriously and that we had a way forward. I think Rob was a bit numb.

However, my feeling of relief was short-lived.

Two weeks is a hell of a long time when you know your husband has Cancer, but you have no idea of the severity, the spread or the prognosis. Family life continued, though sleep was pretty elusive.

The day finally arrived.

Just as Sofia filled her nappy we were called through to the oncologist’s office. I handed her to my Mum who would join us on hospital visits as our mobile babysitter so I could continue to nurse my daughter through the delays and unpredictability of the NHS, while being child-free for the important bits.

Ridiculously, upon reflection, we had built this appointment up to be the one where we would be told what was wrong with my husband – essentially I was expecting a diagnosis, or at least a preliminary one. I mean, I had diagnosed him from the literature, surely to an expert in this field it would be obvious?

After taking Rob’s medical history again (notes do not get passed on or if they do, they do not get read), the oncologist examined Rob. By “examined” I mean he felt his glands in his neck in much the same manner your GP does when you have a common cold.

That was it.

He then declared Rob Cancer-free.

Rob was good to go. He had just got the “all clear” from the Consultant Oncologist, who also happened to be the Head of the Department. It was the news he had been waiting for. He was not dying of Cancer!

I, on the other hand, was furious. How could he feel his glands and declare him Cancer-free? My eyes stung with tears of frustration and I did not get up to leave.

I ran through every single symptom – every symptom, that from my literature search indicated Cancer – and not only that, but metastasized Cancer. Despite this, the oncologist told me “none of those symptoms explicitly indicate Cancer”.

My response? “None of them rule it out”

Poor Rob. He so desperately wanted to believe the oncologist – after all he was the expert and he was saying “infection”. I just couldn’t let that happen, I knew he did not have an infection – tempting theory, but it just did not fit. I trusted my research. I was standing my ground.

“My wife has a PhD in immunology”, Rob said by way of explanation for my insistent questioning, which was being met with some bewilderment.

We went round the loop of the infection argument again. At each point I countered with a reason why it was not an infection – no fever, no illness, it first presented months ago, his visits to the tropics didn’t fit the timeline, no scratches, no abrasions, no sores… The list went on. Again, I resolved not to leave until we had a viable way forward.

We were at loggerheads, so I concluded with this:

“You cannot rule out Cancer without conducting a single diagnostic test.”

On that point, there was no room to argue. Though the honest, and somewhat defeatist, response from the oncologist was “I don’t know what tests to request”.

No problem – I have a list! The top of which was a fine needle aspiration/biopsy of his swollen supraclavicular lymph node (the one in his neck). Add in some blood work and a CT scan and we’re good to go!

Of course nothing is quite that quick and simple – his immediate response was that the ENT (Ear, Nose and Throat) oncologist had been on holiday and was backed-up for weeks. But, he booked blood work and an x-ray and set the wheels in motion for more specific diagnostic tests. It was a way forward at least, even if it meant more waiting.

The next few weeks were fraught with uncertainty, confusion, frustration and fear.

Continue reading this story  HERE

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How did your Cancer story start?  What was your biggest challenge in those early days? 

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You may also like: Caring for Cancer: 6 things I learnt and My Thyroid Story – Hashimoto’s Thyroiditis

If you’re Caring for Cancer and would like coaching and guidance on how to be proactive, the best ways to be an advocate, help with food, nutrition and support then get in touch caroline@flourishwellness.co.uk and we can arrange a time to chat.