health · top tips

How To Cope With Having A Mystery / Undiagnosed Medical Condition

I’ve previously written about how it feels to have a mystery or undiagnosed health condition. This post follows on from that, and looks at tips and strategies for how to cope with undiagnosed illness or while managing an unknown medical condition.

tips for how to cope with undiagnosed illness the sickly mama blog

Tips For How To Cope With Undiagnosed Illness

1. Acknowledge and talk about your feelings

Having a mystery health condition is really hard and stressful. It’s completely natural and normal to feel sad, frustrated, angry, stressed out and more. Trying to keep your emotions pent up isn’t healthy. It won’t help you cope with undiagnosed illness, and it won’t help you feel better in the long run. Give yourself a chance to feel those emotions, and accept the way you’re feeling.

Ideally, talk to someone – a friend, family member or partner – about how you’re feeling. Not only will it help you deal with your emotions, but it will also help them to understand what you’re going through.

2. Communicate your needs

One of the most common complaints from people with chronic illness is that other people don’t understand what you’re going through. It can be especially upsetting and frustrating when it seems that the people closest to you don’t understand – or worse, that they’re not even trying to understand how you’re feeling. You can end up getting that your needs are sidelined or ignored, or that no-one is prepared to help.

Remember that the only way that people will understand is if you tell them. Try to be proactive about communicating and give people a chance to listen to how you’re feeling and what you need from them. I remember a few weeks after my first brain surgery, I had to travel across London. I was very wobbly and it was my first time out on my own, but outwardly I looked like a normal 21 year old.

At King’s Cross station, it was very busy but thankfully I got lucky and found a seat while waiting for my train. Everyone else with a seat in that area was middle aged or older. An elderly woman walked up and stood nearby, and started giving me angry looks and clearing her throat. Clearly she expected me to give up my seat for her, as the youngest person there. But she never actually asked for it.

If she had asked, I would have explained that I really needed the seat, and probably someone else nearby who wasn’t in such need would have offered her their seat. But she never actually asked, so I never explained, so she never got to sit down. No doubt she thought I was incredibly rude, but she didn’t communicate her need, so no-one accommodated it. This really drove home to me the importance of asking for what you need. You might not get exactly what you’re going for… But if you don’t ask, you’ll get nothing at all.

Be specific if you can – for instance, rather than saying “I get very tired and need to rest”, you’ll get better results from saying “I get very tired and can’t be on my feet more than about ten minutes at a time. Then I will need to sit down for half an hour”. You may think that your emotions and needs should be blindingly obvious to anyone with half a brain… But it’s not always the case.

3. Be kind to yourself

Remember to be kind to yourself. When you’re frustrated and stressed and finding it hard to get things done, it’s easy to push yourself too hard and forget to give yourself a break. But it’s important to look after yourself and your mental health. Don’t spend all of your available energy doing life admin – make sure you occasionally have time to have a bath, read a book, chat to a friend, or whatever it is that you enjoy.

But being kind to yourself isn’t just about having a spa day. It’s also about listening to your body and believing in yourself. When you’re experiencing medically unexplained symptoms, it can be easy to start worrying that they’re all in your head. When there is no label that explains the symptoms you’re experiencing, you may feel that people don’t take your illness seriously – or that you shouldn’t be severely affected by it. Try to remember that a diagnosis is not a permit to be ill. You don’t need permission to be sick. Your experiences – your pain, fatigue, whatever other weird and wonderful symptoms you’re experiencing – are real. And you need to listen to your body and its needs, and take care of yourself.

4. Be your own best advocate

It’s a hard truth that when you have a chronic illness, the one who cares most about finding a diagnosis and a treatment is YOU. Yes, it’s your doctor’s job to work out what’s going on, but no matter how committed your healthcare providers are, at the end of the day it’s just that – a job to them. Whereas to you, it’s your life.

Don’t be afraid to advocate for yourself. That is likely to mean different things to different people. It might mean chasing up those appointments that are slow to arrive, or those test results that no-one seems to want to discuss. Or, it might mean having the persistence to keep going back with the same symptoms that no-one seems to want to investigate, or pushing for a second opinion . It might mean using these techniques to get your doctor to listen to you. Whatever you need to do to push your best interests.

5. Seek out support to help you cope with undiagnosed illness

You don’t need to do it alone. Don’t be afraid to ask friends and family for support. It can be difficult to find external support networks, because most charities and support groups focus on specific illnesses… Which is difficult if you don’t know what illness you have. But support is out there for the undiagnosed.

You can join Facebook support groups such as Undiagnosed Illness Support Group or Undiagnosed Chronic Illnesses… And many more. Equally, you may wish to look online for ways to connect with people who experience similar symptoms to you, even if you don’t have a diagnosis yet.

Do you have any tips on living with an undiagnosed medical condition or mysterious unexplained symptoms? What are your recommendations for how to cope with undiagnosed illness? Let me know in the comments!

health

What It’s Like To Have A Mystery/Undiagnosed Illness

Today I’m going to be talking about coping with having an undiagnosed illness – one where the doctors can’t work out what’s wrong (or may even not believe that anything is wrong at all).

I think I’m pretty well equipped to write about this subject; it took years for my brain tumor to finally be diagnosed, including almost a year where I had a resting heartrate of 140 beats per minute (for context, about 60 – 100 bpm is normal, so that’s pretty darn fast) for no reason that anyone could explain. Then, more recently, after I gave birth to my son I experienced unexplained thyroid issues that took a number of months to diagnose.

What it feels like to have an undiagnosed illness

what it feels like to have a mystery undiagnosed illness the sickly mama blog

Having an undiagnosed illness is really stressful (unsurprisingly). It can be helpful to break down and acknowledge some of the key reasons why that is the case, and you may find this list helpful to share with family and friends if they’re struggling to understand what you’re going through. I’ve also written a follow-up post with tips to cope with having a mystery health condition.

The uncertainty is frightening

Often the options for what’s causing your symptoms may include life-changing and/or life-threatening illnesses, such as cancer. It’s very scary to live with the threat of that hanging over you, and it will affect those closest to you as well. It can be difficult to carry on going with your day to day life with that fear constantly in the background.

It’s surprisingly busy and tiring to manage healthcare tests and appointments

It is stressful, unpleasant and often exhausting to go through repeated sets of diagnostic tests. Not to mention that it can feel like a full time job to be constantly chasing up the hospital for test results, next steps plans, and appointments.

It’s hard and depressing having to adjust to having to change short and long term plans

You may have to make changes to your life or future plans based on your symptoms, with no idea whether you will ever be able to go back to how things used to be, or whether your plans will ever be achievable. It can be depressing feeling “left behind”, especially when new symptoms that you initially hope will clear up quickly seem to be sticking around indefinitely. You may feel like you’re mourning the loss of long-held ambitions or dreams.

It’s tiring to keep people updated

Friends, family and employers expect regular updates and it can be difficult to keep telling people that you still don’t know what is wrong.

You can end up minimising how sick you really are

In the absence of a diagnosis, it can be easy for other people to (purposely or unconsciously) minimise or be dismissive of how sick you really are. It can be difficult to get enough support, and it can be frustrating and upsetting to find that people close to you don’t seem to be taking your illness seriously, or even forget about it at times.

Linked to the above – it can be easy for YOU to underestimate your illness. It’s easy to beat yourself up for not getting things done or not keeping up with your normal routine, when there’s nothing “officially” wrong with you. You may worry that nothing is really wrong, that you’re just lazy, or weak.

what it feels like to live with an undiagnosed health condition or mystery illness the sickly mama blog

You can feel like no-one is listening

You may feel that friends or family members don’t understand what you’re going through, but it can be even worse if you feel that your doctors themselves don’t take your symptoms seriously or are not listening. It can be very depressing and stressful to keep going back to your doctors trying to get them to investigate your symptoms.

l’ve written previously about techniques you can use to get your doctors to listen to you, which you may find helpful.

It can be hard to manage existing responsibilities

It may become hard to manage your existing responsibilities – not just work, but parenting or caring responsibilities, or even smaller things like managing bills, life admin and keeping the house clean. Tasks that haven’t been done can build up, causing a high level of background stress and/or guilt about not doing a good enough job.

Money worries with undiagnosed illness

Chronic illness often brings money worries with it. Depending on where you live, you may be dealing with stress and worry about medical insurance and whether it is likely to cover the cost of your diagnostic investigations and subsequent treatment. But sickies everywhere will worry about employment, having to take time off work, and whether continuing to work is realistic in the long term, given your symptoms.

Your Experiences of Mystery/Undiagnosed Illness

Phew! That’s a lot to deal with. Have you experienced living with an undiagnosed or mystery health condition? How did it make you feel? Let me know in the comments! I’m planning on following up this post with a look at coping strategies for mystery conditions, so let me know your thoughts.

baby · child development · health · parenting

Why Does My Baby Shake With Excitement?

Recently I’ve noticed that when Little Man gets excited, he goes through a very specific set of behaviours. He will raise both arms up and out wide, lean in with wide eyes, and start shaking. This could happen over a new and exciting toy, a new experience (such as when we first took him to the seaside and dipped his toes in the ocean), or even a new food. It’s such a rapid shaking, it’s almost like he’s vibrating with excitement. This got us a bit worried… Why does my baby shake so much when he gets excited?

Shaking when excited

We’ve all heard the phrase “shaking with excitement”, but I have to admit I assumed it was a metaphor until I had a baby. It’s almost as if he gets so excited that he just can’t contain himself! Now, I know that babies do lots of things that seem weird (like staring at lights, or crawling backwards) but are actually totally normal. So, is it normal for babies to shake with excitement?

Is it normal for babies to shake with excitement?

Yes! It’s very common. It’s to do with baby’s immature nervous system. Their developing nervous system sends too many electrical impulses to the muscles and they get all twitchy. It’s normal for babies to shake with excitement, when they see someone they know or a favourite toy. This can present in lots of different ways – for instance, full-body shakes, or baby may clench his fists and shake, or tense up his whole body when excited.

Some babies may also display shuddering or shaking at seemingly random times, when there’s no particular reason for them to be excited, and sometimes it can last for a few seconds. No-one really completely understands the cause of this infant shuddering, but it’s not harmful and usually goes away by the time they’re four years old. Sometimes it’s referred to as infant shudder syndrome, shuddering attacks, or shuddering spells.

If baby is otherwise healthy, developing well and meeting his or her milestones, then there’s probably nothing to worry about if he or she tends to shake with excitement. Life is just that exciting when everything’s new! There’s no treatment for infant shudder syndrome, because it’s not an illness – it just goes away over time.

However, of course it can look a bit peculiar, and as a parent you may worry that it looks like your child having a short fit. If you’re worried, it’s always best to err on the side of caution and speak to a medical professional.

When to get worried about baby’s shaking movements

Of course, as parents it’s natural to worry. Shaking can be evidence of a seizure, but there are some specific seizure warning signs to look out for:

  • If shaking continues for over 20 seconds
  • If the shaking movement is accompanied by vomiting, unusual eye movements, or loss of consciousness
  • If it’s associated with illness or injury, or if baby sleeps for a long time afterwards

If you notice any of these signs, you should seek medical help urgently.

Ultimately, you know your baby best, so even if you don’t spot any of the warning signs, if you think it’s time to call the doctor or NHS 111, then do it. It may help (if you think of it at the time) to take a video of the shaking behaviour that’s worrying you, to show your health professional.

Is baby shaking when excited a sign of autism?

When I got onto Google and started researching about babies shaking with excitement and infant shudder syndrome, it was clear to me from the Google search bar that lots of parents who are researching this subject are worried that their baby’s shaking or shuddering could be a sign of autism. This is probably because some people with autism use repetitive or rhythmic movements to soothe themselves, and this can take the form of shaking or hand flapping.

However, these kind of behaviours are also common with neurotypical children, so just because your baby or toddler shakes with excitement or flaps his or her hands, doesn’t mean that it’s a sign of autism. There are other early markers of autism which are more reliable as red flags that something could be wrong, such as a lack of eye contact or smiling. Again though, you know your baby best – so if you’re concerned that something is wrong, talk to your doctor.

Other causes of shuddering or shaking in babies

There are other reasons that babies may display shaking or shuddering movements, beyond excitement, infant shudder syndrome, or epilepsy. Babies and toddlers often shake their heads from side to side when falling asleep – it can actually be a motion they use to help themselves fall asleep (not that it looks very restful, especially when they start head-banging!), or a sign of teething or even an ear infection.

There’s also some suggestion that infant shudder syndrome could be an early sign of vitamin d deficiency in very young babies, so if you’re exclusively breastfeeding make sure that baby is getting their vitamin D drops in line with NHS guidance (babies who are formula fed get their vitamin supplements from the formula, so they don’t need any more).

In conclusion…

So, in conclusion… there are loads of reasons your baby may shake or shudder, but if he or she is specifically displaying this behaviour when excited, it’s probably nothing to worry about. In some situations, continued shaking or shuddering could be a cause for concern though, so exercise your best judgement as a parent, err on the side of caution, and check with a doctor if you think you need to.

why does my baby shake with excitement is it normal
health · medication · top tips

How To Decide Whether To Have Surgery/Radiation/Take the Medication…

I’m a member of lots of Facebook support groups for people with pituitary tumours and other chronic or long-term illnesses. One of the most common types of post is people saying they’re not sure whether or not to go through with whatever treatment has been recommended by their doctor. It’s a big decision, and not something that strangers on the internet can really answer for you! But that doesn’t mean there isn’t any process or technique you can use to make healthcare and treatment decisions… That’s why I’m writing this blog.

I want to share a process I learned doing National Childbirth Trust classes when I was pregnant, which I think is a great technique to follow to help you make these kinds of decisions. It doesn’t have to be restricted to use in healthcare settings, either.

The process is called “BRAIN” and it’s an acronym to help you to remember the questions you should ask about your recommended treatment. You should consider:

  • Benefits – what are the possible benefits of this treatment?
  • Risks – what are the risks of doing this?
  • Alternatives – what alternative options are there? Why are they not the recommended option?
  • Intuition – what does your gut feeling tell you?
  • Nothing – what would happen if you don’t do anything?

I think this provides a really great format to have a constructive conversation with your healthcare provider, and to ensure that you’re fully informed about your treatment. It can be helpful to take this list to your appointments so you can work through each question when you see your doctors (if you’re anything like me, you forget what you want to ask if it’s not written down!), to inform your treatment decisions.

I’ve also written previously about my experience of pituitary tumor surgery and making the decision to go ahead with surgery (twice) – you can read about that here.

birth · health · post-partum · pregnancy · thyroid

Could You Have Post-Partum Thyroiditis? I Do!

Any regular readers of this blog will know that for a few months now I’ve had some mysterious medical issues that my doctors have been somewhat baffled by. I’ve had blood tests, an MRI of my pituitary, and a scan of my thyroid with radioactive technetium. Despite being told at the hospital that the results of my scans would be available within a couple of days, it took a month before anyone actually got back to me with the results. I tried to take that as a sign that it wasn’t anything incredibly serious, but anyone who’s had extensive dealings with my hospital’s admin systems would know that you wouldn’t want to stake anything particularly important on their effective functioning (like, say, your long term health…)

Anyway, I finally heard from a doctor, and he confirmed that they believe I have a condition called post-partum thyroiditis. Even though I already have a pre-existing thyroid condition, I’d never heard of this quite common post-pregnancy thyroid illness. So what is post-partum thyroiditis?

Post-partum Thyroiditis

What is post-partum thyroiditis?

Long story short, this is caused by your thyroid gland going a bit haywire due to a rebounding immune system after pregnancy. It typically starts with having thyroid hormones that are too high (hyperthyroidism) for a few months. Then it either just returns to normal, or the thyroid hormones dip too low (hypothyroidism) for a few months – or even permanently.

How would I know if I have it?

Post-partum thyroiditis is actually quite a common condition with around 5 – 10% of women experiencing it, although a lot of the time the symptoms are just ascribed to normal post-pregnancy recovery. Most women initially experience hyperthyroidism – symptoms can include a racing heartrate, anxiety, tiredness, difficulty sleeping, achey muscles, twitching or shaking, feeling hot or sweating a lot, and weight loss. Obviously most of those could easily be ascribed to the post-birth recovery period and/or sleep loss thanks to your new baby.

The only way to know for sure if you have post-partum thyroiditis is to have blood tests to check your thyroid hormone levels. So if you’re concerned that you may have this condition, please make sure you speak to your doctor about it.

How is post-partum thyroiditis treated?

Hyperthyroidism as a result of post-partum thyroiditis (let’s just call it PPT) is not usually treated beyond beta blockers to reduce the impact of the symptoms of fast heartrate, anxiety, etc. Conveniently, I’m already taking beta blockers as my doctors tend to prescribe them at the first sign of hyperthyroidism, as my heart loves to go too fast and will take literally any excuse to do so.

Hypothyroidism might need to be treated with replacement thyroid hormone if it becomes severe enough. I’m hoping we don’t have to go there.

How long does postpartum thyroiditis last?

How long is a piece of string? Unfortunately, it seems that postpartum thyroiditis is a very variable condition and each woman has a different experience, so there’s no way of saying how long my postpartum thyroiditis will last. It could be a few months, a year, or even longer – sometimes the side effects are permanent.

What are the risk factors for postpartum thyroiditis?

The big question for me was whether my existing pituitary condition (which affects my thyroid) creates a risk factor for postpartum thyroiditis. A quick Google indicates that I’m not the only person with a TSHoma to go on to develop post-partum thyroiditis. But because my pituitary tumour is so rare, when anything out of the ordinary happens the doctors don’t really know what to expect. However, previous history of thyroid issues is a known risk factor for post-partum thyroiditis, as is a history of auto-immune illness.

What are the implications for me personally?

It’s just a case of wait and see, and hope I don’t end up with low thyroid levels, as that could make things complicated in terms of treating it and my pituitary tumour. So please keep your fingers crossed for me!

In the meantime, I’m back to monthly blood tests to monitor my thyroid level and regularly checking in with the hospital.

Are you a postpartum thyroiditis patient in the UK? I’d love to hear about your experience! Let me know in the comments.

health · top tips

How To Get Your Doctors To Listen To You

It took me about five years to get diagnosed with my pituitary tumour. That’s a guess, really – looking back, the first symptom I had was my hair starting to fall out, which started when I was around 16 years old. I didn’t get a diagnosis until I was 21, and I spent so many years wondering: how do you get your doctors to listen to you?

Now don’t get me wrong, my illness is super rare, but five years is still an incredibly long time to wait for a diagnosis. For the majority of that time, I had steadily increasing symptoms of hyperthyroidism, and was consistently told it was all in my head. I went to the doctors numerous times about:

  • Hair falling out
  • Heart palpitations and fast heartrate
  • Fatigue
  • Getting ill all the time – I caught every cough and cold going, and half the time it would turn into a chest infection or sinusitis or tonsillitis

My GPs pretty much just kept doing the same blood tests, which came back fine, or simply suggesting I was stressed and asking me how things were at home. I actually got to the point of wondering whether it was possible to be so stressed that your hair falls out without actually feeling stressed out about anything at all (other than the fact that your hair is falling out, ironically).

It was only when my resting heartrate suddenly jumped to 140 beats per minute (a normal heartrate is 60 – 100 bpm) and there was something unambiguously WRONG with me that they started taking me seriously and sending me for more tests and scans, and eventually worked out what was going on. I’ve since experienced, both with my own medical problems and those of others, numerous other occasions of feeling not believed/not listened to by doctors. So, I wanted to share my best tips for getting your doctor to listen to you and take you seriously.

5 Ways To Get Your Doctor To Listen To You

1. Be Organised

When you’re on the spot with a busy GP who you feel is being dismissive of your concerns, it can be difficult to remember everything you wanted to say or all the questions you wanted to ask. Write your key points down in a notebook or on your phone before you go, and take it with you to the appointment. You can also jot down the key points the doctor says during the appointment, to ensure you don’t forget anything.

Stick to your guns and make sure you say everything you wanted to say at your appointment (but make sure you get straight to the point and don’t waffle – doctors are busy people!). If your doctor interrupts you, you can go back to what you were saying later on (easiest if you have a list of your key points). If your doctor asks you only closed questions (yes/no questions), you can expand on your answers and give more detail.

2. Be Specific

If you are experiencing symptoms which concern you, write down:

  • How frequently they are occurring
  • How long they last
  • The impact this has on your daily life
  • Anything you’ve done to try to treat the symptoms and how successful this was

And tell your doctor this specifically. If you say something like “I’m getting quite a lot of bad headaches”, this is open to interpretation. How bad is “bad”? How often is “quite a lot”? On the other hand, if you can say “I’ve had five headaches in the last two weeks. They lasted between three and six hours, and I had to go to bed every time because paracetamol didn’t help. I’ve had to take three days off work because of it”, that helps your doctor to gauge exactly how serious your symptoms are.

3. Bring A Friend

Having someone else there (partner, parent, friend, housemate) can also be helpful, especially if that person can attest to the impact your symptoms have had. When my husband was quite poorly with his gluten intolerance, he kept going back to the doctors about his symptoms and getting fobbed off. When I went with him to one appointment and also talked about how he had lost a lot of weight and wasn’t himself, we finally got the doctors to listen and refer him to the hospital for proper investigation of his symptoms. I think if you’re relatively young and fit-looking, it helps to have someone else back you up when explaining how I’ll you’ve been.

4. Ask Questions

If you feel like you’re being fobbed off or you’re not getting the treatment/investigations you expected, asking questions is the way to go. Questions like:

  • “I thought you might want to do some blood tests. Can you just explain to me why you’re not doing that?”
  • “If you’re not concerned at the moment, are there any particular symptoms I should look out for that would be more of a concern?”
  • “If my symptoms don’t improve, how long should I wait before I come back to see a doctor again?”

Asking questions can help to open up more of a dialogue between you and your doctor, and also give you more reassurance about why the doctor is making certain decisions.

5. Remember Your Options

Ultimately, if your doctor isn’t listening to you, you can always ask for a second opinion from another doctor. Although the ideas listed about should help to get your doctors to listen to you, they won’t always work and not all doctors will be interested in listening. Changing doctors may be a better option than feeling like you’re banging your head against the wall with a physician who isn’t taking you seriously.

What are your top tips for getting the most from your interactions with doctors and healthcare staff? How do you get your doctors to listen to you? Let me know in the comments!

how to get your doctors to listen to you sickly mama blog graphics
health

Going To Hospital During Covid-19 Lockdown

I recently had to attend hospital for an MRI scan and scan of my thyroid gland, as my doctors try to work out why I’m experiencing high levels of thyroid hormones at the moment. Although the UK has started easing Covid-19 lockdown measures, obviously in hospitals they’re still very strict about the lockdown rules, so I thought it might be helpful to write about my experience, to help ease your mind if you do need to attend hospital at the moment.

Going To Hospital During Lockdown

28 Days Beta

The hospital seemed very quiet and empty. I’m used to going there regularly with all my health issues, and it’s always a bustling place. Not currently! There were whole corridors completely devoid of human life. It was like being in a really boring zombie movie, where the zombies are quite neat and tidy and make sure to mop the floors once in a while.

photo of hospital corridor during coronavirus lockdown 2020
I am legend(ary with a broom)

In waiting areas, chairs had been moved to a distance of 2 metres apart, and where there were fixed groups of chairs, they taped off every other chair to create gaps. In one department, they had actually zoned the waiting area and each person was directed to their own personal zone! It did mean there was less capacity for waiting, and I saw one guy who turned up very early for his appointment being turned away due to lack of space, so that’s worth being aware of if you’re usually an early bird.

Everyone’s An Expert

Everyone is required to wear face coverings in the hospital at the moment. I brought my own mask (sparkly face mask by the amazing Velvet Jones Bespoke), but they were handing out free paper masks at the main entrances, and most people just seemed to be taking the free masks… Not sure that’s great for our cash-strapped NHS, but there you go.

wearing a sparkly sequin face mask at hospital during the coronavirus lockdown 2020
If you’re going to wear a face mask, it might as well be sparkly!

As a result, walking around the hospital you get the impression that everyone you see is a surgeon, because they’re all wearing surgical masks. There are a lot of sloppily dressed surgeons out there, I can tell you.

Visitor Free Since ’93

Now all hospitals are different at the moment, my hospital has started allowing some limited visiting of inpatients, but if you’re attending as an outpatient you’re not allowed anyone with you, unless they’re your carer or you’re a parent accompanying a child.

Break It Off

The food halls, shops and coffee outlets at the hospital were mostly closed. There was one coffee shop, the canteen and one mini supermarket open, both using social distancing rules. Everyone behind the counters wore masks and were behind plastic screens as well.

I had a big gap between my first and second appointments, so I was relieved that the main food hall was still open. Tables had been moved two metres apart and there was a man with a disinfectant spray constantly on hand, swooping in and cleaning tables when people left. It was very quiet though, only a few people in the whole place. You were allowed to take your mask off to eat and drink in there!

hospital dining hall during the coronavirus lockdown 2020
Table for one

One MRI, No Waiting

From talking to staff, it sounds like they’re doing fewer procedures and seeing fewer patients than usual, which is good news if you’re one of the patients they are seeing! The MRI scan lady proudly informed me that they no longer have a backlog (because they’re doing fewer scans than usual) and the technician who did my thyroid scan said it was the first time they’ve done that type of scan in three months.

That was my experience of attending hospital during the coronavirus pandemic. Hopefully it’s useful if you need to visit hospital as well. Or if you’ve had experience of going to hospital during lockdown, perhaps you can share your experiences in the comments below!

health · top tips

How To Manage An MRI Scan If You Have Anxiety Or Claustrophobia

Having an MRI scan is a really important diagnostic procedure. If you have a pituitary tumour, chances are that the diagnosis was confirmed via an MRI scan, and there are lots of other conditions that require you to be scanned as well.

I’m an old hand at MRI scans, I’ve lost track of how many I’ve had to check on the pituitary tumour in my head. I just had a scan on Monday, to try and work out what’s going on with my current raised thyroid levels.

Having your head scanned requires your whole body to be inside the MRI scanner, which can be especially daunting if you suffer from claustrophobia or anxiety, and other people usually aren’t allowed to be in the room while the scanner is on.

So how can you manage anxiety or claustrophobia if you need to have an MRI?

How To Manage Anxiety During An MRI Scan

Talk to Your Doctors

The most important thing is to discuss your claustrophobia or anxiety about your scan with your doctors as early as you can, before the day of your scan if possible. They may be able to make special arrangements for you or help to allay your fears!

Sedation During An MRI

You may be able to discuss your anxiety with your doctors, and either your GP or hospital staff may agree to prescribe a mild sedative to help you manage the MRI process. If you think this may help you, it’s important to raise it with your doctors as early as possible before your MRI scan, as it can take time to discuss, arrange and agree.

Open or Upright MRI Scanning Machines

Now, if you’re lucky enough to have private health insurance or a big wad of cash stuffed under your mattress, you may be able to access different types of scanners through private providers. There are upright and “open” MRI scanners available, which are designed to reduce claustrophobia, but these are not normally accessible on the NHS. In some areas, these types of scans may be available if a formal application is made by your doctors, but funding these types of scans is not usually considered a priority.

You should also be aware that these types of scanners usually use lower magnetic fields and thus give lower resolution images than traditional MRI scanners, so they may not always be suitable for the type of scan you need.

tips and strategies to manage anxiety and claustrophobia in MRI scans the sickly mama

Know What To Expect During An MRI Scan

If this is your first time having an MRI, it’s really helpful to know what to expect, so you can prepare yourself mentally for the experience. Most of us have seen an MRI scanner on TV, but that doesn’t give you much of a picture of what will happen to you when you go for your scan.

Some key things to be aware of:

  • MRI scans can take a while! 20 – 40 minutes is completely normal. If they have difficulty getting a clear picture (for instance, if you move during the scan), it can take longer if they have to re-do scans.
  • Linked to the above, you will need to stay as still as possible in the scanner while the pictures are taken.
  • MRI scanners make very loud, jolting whirring and metallic noises which can be a little overwhelming and don’t follow any sort of pattern or rhythm so are hard to predict. You will be given ear plugs. The sudden noises can be stressful and make you jump, which obviously makes it hard to stay still!
  • You will be in the scanner in a room on your own, however you will be able to hear the staff through an intercom. You will have a panic button to press at any time if you need it, and they will come and get you. In some scanners I’ve been in, you can see the staff via a mirror, which I think is nice.
  • You may need to have an injection partway through the scan if your doctor has ordered an MRI “with contrast”.
  • If you are having an MRI scan of your head, your head will probably be placed inside a mask, with padding, to make sure it doesn’t move during the scan. It’s not uncomfortable but can feel claustrophobic.

Non- Medical Ways To Manage Anxiety During An MRI Scan

There are ways to manage anxiety during an MRI scan without sedation or alternative scanners. Here are my top tips!

Distract Your Brain

Give your brain something to do to distract it from what’s going on. I learn poetry before a scan and then during the scan I challenge myself to remember the poems! It’s a great way to make the time go faster and take the focus away from what’s going on around you. If poetry isn’t your thing, try:

  • Mental maths puzzles – practice your times tables up to really high numbers or try long division in your head!
  • Remembering lines from your favourite TV show or film.
  • Navigating a familiar journey – give yourself a destination and visualise yourself travelling the route of that journey from your home.
  • Remembering names – people in your primary school class, old teachers, university classmates or work colleagues.
  • Anything else that challenges your brain to remember or complete a difficult task.

Breathing Exercises

It’s easy to dismiss breathing exercises as hippy nonsense, but they really can help you manage stress and anxiety. Slow, controlled breathing has been proven to affect the nervous system and brain activity, and to increase sensations of comfort and relaxation. So it’s definitely worth a try!

The NHS provides basic online guidance on breathing techniques for stress that are simple and easy to do. You can also easily find guidance and videos online via a quick search. Breathing exercises usually involve counting patterns of breath, which also works to distract you just like the suggestions above!

Close your eyes

This one seems too simple to be true, but I know lots of people swear by it! Close your eyes when you’re being put into the MRI machine, and don’t open them again until you’re done. This strategy seems to work especially well for people who struggle with the claustrophobia aspect of MRI scans.

How Do You Manage Anxiety During MRI Scans?

Do you have any other suggestions for how to manage MRI scan anxiety? Let me know in the comments!

health · thyroid

My Experience Of Having A Radioactive Thyroid Scan With Technetium

My doctors told me they wanted me to have a scan of my thyroid to try to help work out why I’m currently experiencing hyperthyroidism. I had a letter inviting me to a technetium thyroid scan, which also specified that I was not allowed to eat seafood or take vitamin supplements containing iodine for 48 hours before the scan. Easy enough! But what is it like to have a radioactive thyroid scan? I’ve written about the whole experience below…

Radioactive Thyroid Scan – My Experience

Before The Thyroid Scan

I arrived at the Department Of Nuclear Medicine at 8.20 on Monday morning, and my immediate thought was that they probably have the most badass name of any hospital department. I got signed in, and waited for my name to be called. The chairs in the corridor were all arranged at two metre intervals, with tape marks on the floor to show safe distancing.

The Technetium Injection Process

Predictably, when my name was called it was pronounced wrong, but that broke the ice with the technician doing my injections, who was lovely. I was taken to a side room to have an injection of a radioactive isotope called Technetium, which sounds like a made-up element from the Marvel universe, but is apparently a real thing. They used to use radioactive iodine for these kinds of scan, but this has now been mostly replaced with technetium, which gives a lower radiation dose.

Before the injection, I was asked some questions. The technician checked whether I have claustrophobia and whether I was able to get up and down from a couch, which I thought was good practice checking for hidden disabilities. Then there was the usual “you’re a woman so please sign on the dotted line that you’re not pregnant” and they checked my identity one last time.

The injection itself was nothing at all! They jab you with a tiny needle, flush the line with saline solution, then give you the technetium injection. Because it’s radioactive, the needle has a little tungsten jacket to protect the technician’s eyes and fingers from the cumulative effect of giving multiple radioactive injections every day! Then they flush the line with saline again.

Before The Gamma Camera Scan

Once you’ve had your injection, you wait about twenty minutes before your scan. I was put in a little side room for radioactive people to wait, because you’re actually emitting gamma radiation during this time. You would never know it at all – you honestly can’t feel a thing! The effective radiation dose of a technetium thyroid scan is about 3.2 millisieverts (mSv) – the average annual dose from background radiation in the UK is 2.7 mSv. So it sounds like a lot, but actually if you live in Cornwall, your average annual dose of radiation is 6.9 mSv, due to the high levels of radon in the ground in Cornwall. And the annual limit of radiation exposure for nuclear industry workers is 20 mSv – so when you put it in context, it doesn’t sound so bad. None of us would worry about spending six months in Cornwall! (Unless you’re a city kid, I guess…)

After twenty minutes, I was called in to have my scan, in a machine called a gamma camera, or scintillation camera. Here’s a picture of the one I was in:

gamma camera scintillation camera machine radioactive thyroid scan with technetium experience sickly mama blog

The Technetium Thyroid Scan Itself

I was asked to have a couple of sips of water, take off my necklace and face mask, and lie on the bed part of the gamma camera machine. Then the panels that you see on the left in the picture above swiveled so one was above my head and one below. They lower the panels until they’re very close to your head – the one above me was almost touching my nose!

The process of taking the pictures was weird because you can’t actually tell that anything is happening at all. There’s no noise like in an MRI scanner – you literally just lie there feeling a bit silly. Each picture took 1 – 5 minutes and at one point they reconfigured the scanner to get a close up of my thyroid gland. Then it was done!

My Experience Of Technetium Thyroid Scan

Overall, this was a really easy procedure. Anything that involves radioactive material can feel a bit scary, but it was totally painless, easy, and comfortable. If you are claustrophobic, you may not enjoy the experience of the scan itself as the machine gets so close to your face, but it’s better than an MRI scan because the machine is open at the sides, so you’re not trapped in a tube, it’s much quieter, and the scans are taken much much more quickly, so you don’t have to spend much time in the machine at all. Plus the staff were very aware that it could be uncomfortable for claustrophobic people and asked if I was okay with the scan etc. while it was ongoing.

What happened after my thyroid scan?

It took a long time to get the results of my technetium thyroid scan and get a diagnosis, but I did eventually get there… Click here to find out what happened next.