mental health

How To Manage Blood Test Anxiety

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I’ve never been a massive fan of blood tests, and my opinion of them hasn’t exactly improved with much closer acquaintance. And trust me, diagnosing a TSH-secreting pituitary adenoma involves a very close acquaintance with the phlebotomists (a.k.a. vampires, a.k.a. people who draw blood for testing) of your local hospital. People are weird, so there’s probably at least a couple of oddballs out there who positively enjoy having their blood drawn, but I am not one of them. In fact, needle phobia is really common – affecting perhaps one in ten people. So how do you manage blood test anxiety if you have a condition that requires lots of blood tests?

How To Manage Blood Test Anxiety

Try to understand your anxiety and symptoms

It may be helpful to consider if there is any particular source of your blood test anxiety or needle phobia – for instance, an upsetting experience as a child, or a fear of fainting, feeling sick, or the pain of the needle. Or it could be associated with the sight of blood, which many people can find to be a trigger for anxiety, a more general fear of medical procedures or hospitals – or even having a parent or caregiver as a child who exhibited anxiety about any of these things. Understanding the triggers for your anxiety doesn’t necessarily solve anything, but it can help you work out what parts of the blood test situation are a problem for you.

In terms of symptoms, anxiety tends to be linked to one of two things:

  • Often needle phobia or anxiety around blood tests is linked to feeling faint, or a fear of feeling faint. Fainting can occur as a result of a drop in blood pressure.
  • Otherwise, it may be linked to physical symptoms of stress or panic, such as a racing heart, sweating and/or feeling nauseous.

Understand what to expect

It’s helpful to understand what to expect in your blood test appointment, and prepare yourself for it. The unknown is always scary. Probably the most important thing to keep reminding yourself is that blood tests usually don’t take more than a couple of minutes! So hopefully you shouldn’t have to manage your blood test anxiety for too long.

Usually, at the start of your appointment you will be asked to confirm some details about yourself. Then the phlebotomist will disinfect the skin where the needle will go (you usually get to pick which arm they’ll target!) and wrap a tourniquet around your upper arm, to make the veins stand out more. They may ask you to make a fist or pump your hand – again, to make the veins stand out. Then they’ll put the needle in – usually they’ll warn you just before it happens, and ideally you want to keep your arm relaxed. They may need to keep the needle in while swapping over blood collection tubes, if they need to do a number of tests.

When your phlebotomist removes the needle, they may ask you to press on the vein, to reduce bleeding, and they’ll probably offer a plaster or cotton wool and tape to cover the cut.

Follow some key steps before your appointment

Eat and drink beforehand (if allowed)

Some blood tests require fasting, so if that’s the case, make sure you follow the rules – but fast for the minimum time allowed. It’s really important to stay hydrated, because dehydration lowers your blood pressure, which makes drawing blood more difficult and makes it more likely that you may feel faint after your blood test.

If, like me, you’re also a bit inclined to end up with low blood sugar, then making sure you’ve had enough to eat or a sugary drink beforehand (if allowed) may also help, as low blood sugar can also make you feel faint.

Wrap up warm

It’s helpful to make sure you stay warm. When your body is cold, it causes the veins near the surface of your skin to shrink down, making it harder to draw your blood.

Plan something nice for afterwards

Try to give yourself something to look forward to after your appointment; something that you can focus on as a pleasant experience. It can be something small, like a nice coffee from the hospital canteen, or something bigger like a trip out or exciting dinner plans. Try to focus on this as something positive to look forward to, rather than focusing on the blood test appointment.

Key steps to manage blood test anxiety during your appointment

Talk to your phlebotomist about your blood test anxiety

Make sure you tell whoever’s taking your blood that you’re anxious about blood tests. There’s no need to be embarrassed; they will have seen hundreds of people with needle phobia before. They can help ensure that you feel as comfortable as possible, and distract you from what’s going on. They may also be able to make other accommodations, such as allowing you to lie down if you’re concerned about fainting, or allowing you to bring a friend or family member with you for moral support.

Similarly, if you have veins that are difficult to find, make sure you warn your phlebotomist.

Remember to breathe

So far, so obvious. If you’re anxious, you may find yourself unintentionally holding your breath while you wait for the needle to pinch you. But that won’t help – in fact, holding your breath interrupts the oxygenation of your blood and may make you more likely to faint.

Instead, try using relaxation breathing techniques to help you get through your blood test appointment. 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 your brain from what’s going on.

Don’t look!

Try not to look at the needle. These days, I’ve had so many blood tests that they don’t really bother me any more, but when I did find them more stressful, I always found that it was best not to look at my arm or what the phlebotomist was doing. In fact, the sight of the needle or of blood may actually set off the anxiety reaction (vasovagal syncope) that can cause you to faint – so it’s best avoided.

Instead, I would pick something else to look at – there are often posters or notices on hospital walls, so pick one and focus on that instead.

Distract yourself

Anxiety can increase when you focus on the source of your anxiety, so distracting yourself is a helpful way to manage blood test anxiety. You can try counting in your head, trying to remember or run through song lyrics, or chatting with the person who’s drawing your blood. You could even watch a video or listen to music on your phone during the blood test, to keep your mind off what’s going on.

Use the Applied Tension technique

If you tend to faint during blood tests, you can use something called the ‘Applied Tension Technique’ to help. This aims to help maintain blood pressure and prevent the sudden drop in blood pressure that can lead to fainting (or just feeling faint), through undertaking some physical exercises. It’s a straightforward technique, which simply involves tensing the muscles in your body to increase your blood pressure. You can read more about this technique and how to use it here.

Consider professional help

If your blood test anxiety or needle phobia is very severe, it can interfere with your medical treatment if it results in you avoiding blood tests. If the steps outlined above don’t help you manage your blood test anxiety, consider whether it could be helpful to seek professional help. You should be able to find a therapist who can help you address your anxiety over time.

Your suggestions to manage blood test anxiety

Have you suffered from needle phobia or blood test anxiety? How did you learn to manage your fears and get through blood tests? Please share your experiences and suggestions in the comments!

Just for fun

Why You Should Always Find Out Your Surgeon’s Birthday

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Today is my birthday! How old am I? Fortunately that’s not relevant to this blog post. Because today, we’re going to be talking about the most important birthday you need to add to your calendar. And, hard though it is to believe – it’s not my birthday… It’s your surgeon’s. Because a study in the British Medical Journal (BMJ) has found that patients who underwent surgery on the surgeon’s birthday exhibited higher mortality than patients who underwent surgery on other days.

Wait, what?

Yes, that’s correct. Your surgeon is more likely to kill you if they’re operating on you on their birthday. How’s that for a crazy fact – and a completely inappropriate topic for a light-hearted celebratory birthday blog post? In my defense, the study was published as part of the British Medical Journal’s fun and festive Christmas edition, so I’m not the only one completely misjudging the suitability of the topic for light entertainment.

It’s my surgeon’s birthday. How worried should I be?

The study looked at almost a million surgical procedures performed by 47,489 surgeons, and found that mortality rates were 6.9% on surgeon’s birthdays, compared to 5.6% on other days. That’s a pretty noticeable difference – but there are, of course, a few “buts”…

The study looked at 17 common emergency surgical procedures, performed on patients aged 65 – 99, at US hospitals from 2011 – 2014. The fact that these were emergency procedures performed on older people means the expected mortality rate for the first 30 days after surgery was already quite high. Unless you’re a 65+ year old undergoing a common medical emergency, even if it is your surgeon’s birthday, you’ve probably not got a 6.9% chance of dying. Good news for anyone getting an ingrowing toenail removed (or having pituitary surgery).

Additionally, apparently it’s actually comparable to the kind of increase in death rates that is seen at other times – including Christmas, New Year and weekends. So that’s… not at all reassuring, actually, now I think of it.

Why does it happen?

Well, the study was observational, meaning that the authors couldn’t establish the reasons behind the ‘birthday effect’ they observed, or exclude the impact of other, unmeasured factors. But they suggested a number of factors that could be at play:

  • Surgeons rushing to complete procedures on their birthday if they have plans to celebrate later on.
  • More distractions from birthday phone messages or conversations with team members, which could lead to more errors.
  • Surgeons being less likely to check up on patients following surgery, if they are busy with birthday plans.

They all sound totally plausible, although I’ve also thought of a few of my own that the researchers somehow missed:

  • Surgical staff suffering from a sugar rush and subsequent drop in blood sugars after eating birthday cake, impairing surgical performance.
  • One or two evil surgeons intentionally killing patients as part of some kind of sick annual birthday ritual. It’s probably a whole conspiracy, guys. I wouldn’t be surprised if it turned out Bill Gates was involved.

How reliable is the study?

I’m not a statistician, so I’ll leave that question to more experienced maths jockeys. I will say, however, that the letters section of the British Medical Journal website contains a number of letters on the topic from some very disgruntled surgeons, and is well worth a read. To quote one letter from neurosurgeon Steven A. Reid: “One wonders about the intrusion of errors on the part of statisticians on their birthdays — I’m certain the outcome isn’t as dramatic. More speeding tickets perhaps?”

And in conclusion…

Well, I’m not a surgeon, but you’ll be glad to hear I’ve booked my birthday off work anyway. You can’t be too careful, right? And if you’re reading this while in the office, well… play it safe and go read about my experience of transsphenoidal pituitary surgery rather than doing any more of that dangerous work stuff…

Just for fun · medication

How To Cope When Dealing With Hospital Administration Systems

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Something that no-one realises about chronic illness, until they become ill themselves, is the sheer amount of extra life admin it generates. It’s simply incredible how much time can be taken up by what should be simple tasks – booking appointments, getting hold of medication, finding out test results, getting in touch with the right person if your symptoms change… It can actually become extremely stressful and difficult to cope with hospital administration systems and the issues they can create through sheer inefficiency.

I think the worst instance of hospital administration failure that I encountered was when I was telephoned by the hospital and told off for missing an MRI appointment after my first pituitary surgery. I had indeed missed the appointment, because the letter had got lost in the post. As I had been expecting a scan appointment, though, I had actually called the hospital two weeks earlier to chase up, and been put through to the MRI department, who had told me that I was not booked in for any scans. I later discovered the hospital for some mad reason has two MRI departments, so presumably my scan was with the other department, and at no point did anyone think to tell me to check with both departments. Well done, hospital. Good use of public money.

I was first diagnosed with my pituitary tumor aged 21, which means that I’ve been dealing with the hell that is hospital admin for 11 years, the vast majority of my adult life. And that means that I have a few tips to share!

I used to think that the difficulties I encountered in getting anything done was because I was dealing with the National Health Service. I’m so grateful for the NHS funding my treatment that I would just remind myself to be grateful for it, and put up with the terrible admin, endless phonecalls and feeling of being lost in the system. Then one of my friends developed a serious medical issue which they had treated privately… And they encountered the exact same problems! It seems that terrible admin may well be a universal healthcare experience. So here are my top tips for how to cope with hospital administration, without falling into a pit of total despair…

Top Tips For How To Cope With Hospital Administration Systems

1. Be Organised

You have to be organised. Just because your doctor tells you something will happen doesn’t mean it will, without your intervention. Keep a note of what appointments you’re due to have, and if you haven’t heard from the hospital or doctor’s surgery well in advance, get in touch to check what’s happening.

2. Get Ahead Of The Game

Try to get in touch with your hospital nice and early if you haven’t heard anything. It gives you the most time to get something sorted. There’s nothing more stressful than realising that, for instance, you’re going to have a gap in treatment because the hospital has forgotten to send you a prescription or order the right tests. So make sure you chase up on things sooner rather than later.

3. Remember it’s not anyone’s individual fault

When you’ve made six phone calls and still made no progress with getting an appointment sorted, it’s incredibly frustrating. Try to remember it’s not the fault of the people you’re talking to, who are mostly just human beings trying to do their jobs in an imperfect system. You’ll get better progress by trying to be friendly and build a rapport with the staff you talk to, rather than getting annoyed.

4. Think outside the box

Most hospital departments and doctors surgeries have a public number you can call, but of course when you do, you end up speaking to someone who knows nothing about you or your issue. As a result, you can find yourself explaining yourself over and over again to different people, and feeling like you’re getting nowhere.

It’s time to think outside the box! Firstly, get Googling. In hospitals, often the consultant or head of the department you’re under will have their own secretary and you may be able to find their contact details online, or even on the letters you’re sent from the department. You may have better luck contacting the secretary if you have specific issues with your treatment or new symptoms.

Over time, you may also be able to build up other contacts. Some hospital departments have specialist nurses attached to the department who run certain tests or follow-ups. If you can find the public phone number for the specialist nurses, they may be especially helpful in chasing up on things for you. I love the specialist endocrine nurses at my hospital, they’re so lovely and super helpful.

5. Take up cathartic screaming

Ultimately, despite all your best efforts, your encounters with hospital admin systems will likely still be frustrating and inefficient. At some point, it’s best to accept this and try not to let it get to you. All you can do is try your best to smooth the process, give timely reminders, and chase up on things that should have been organised for you.

Make sure you can have a good rant to a friend or family member about how frustrating it all is. If you find yourself getting too stressed out, try to take a step back and give yourself a break. You can always start making phone calls again tomorrow.

What are your worst experiences with hospital admin? Do you have any tips for how to cope with hospital administration systems? Let me me know in the comments!

medication

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

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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.

medication · thyroid

Could You Have Post-Partum Thyroiditis? I Do!

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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.

medication

How To Get Your Doctors To Listen To You

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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!