My Life With Adrenal Insufficiency

When Visiting the Dentist could Kill You Adrenal Insufficiency

Dentist

When Visiting the Dentist could Kill You

Adrenal Insufficiency

As a Child I loved going to the Dentist. I would get my teeth checked, get a sticker and usually a new tooth brush and toothpaste. I loved the strawberry toothpaste, it tasted so good. As I grew appointments got a little worse. Every once in a while I would need a little work, a filling here or there. I hated those needles and the numb feeling you get after treatment, but at the end of the day it was not that bad. I’d get my teeth sorted and not worry for another six months.

Everything changed when I developed Adrenal Insufficiency. You see the week before I was diagnosed with my illness, I had a dental appointment. I needed a filling. It wasn’t too bad, two injections, drilling and filling a small hole in my front tooth.  It felt funny. I felt light headed. It wasn’t anything like my previous experiences, I felt confused and sleepy.

Once the dentist finished, I stood up, I walked out the door towards the reception and then I passed out. I didn’t know what had happened. I was given a glass of water and told to take a rest for a few minutes.

Eventually I dragged my wobbly body to the Taxi stand and managed to get myself home fairly quickly. I felt ill for a few days. Headaches, nausea and muscle weakness. I did not know what was wrong.

Each night I felt more and more unwell. I didn’t know what was wrong. I could no longer stand. The dizziness continued and I collapsed again. My husband rang the ambulance. I was taken to hospital. This was my first recorded Adrenal Crisis. my Blood pressure was so low and I stayed in the hospital on a drip for a week.

Next I was then told I had Adrenal Insufficiency and given steroids to to take daily for the rest of my life.

I had to return to the Dentist to do further work on my tooth. This time I knew I had adrenal Insufficiency and I knew what could happen if I did not take extra medicine before dental treatment.

You see having adrenal Insufficiency means you don’t produce Cortisol, the hormone that helps the body cope with stress. On a daily basis I have to take enough Hydrocortisone to replace that which my body is not producing.

However if I am unwell or having a procedure which causes the body to be under stress and require more Cortisol, I have to follow stress dosing rules.

The only problem was when I was diagnosed with AI, I was not told about the Stress Dosing Rules.  had no idea I would need to take more Hydrocortisone an hour before any Dental procedure.

So I returned to my appointment. I had the treatment and once again I collapsed. This time we knew what the illness was and I Returned to the A and E, to be treated once more.

It was not until a few months after diagnosis that an Endocrine Nurse explained the seriousness of my condition. I had not been told art hospital that I could die from an Adrenal Crisis. I had not been given stress dosing rules when started on hydrocortisone. The Endocrinology Nurse was supposed to come and see me, but the Sister on the Ward wanted me out as soon as possible and sent me on my way not knowing the seriousness of my condition.

Finally, I got information after a few months. I read that before dental procedures to take an extra 10mg of Hydrocortisone. Then it clicked and I realised what had happened the previous two times.

One year after diagnosis I went back to the Dentist. My Filling had fallen out and needed redoing! This time however the Dentist refused to treat me. He did not want me to collapse.

I had to write to the hospital for a letter to instruct my Dentist what to do. It was a lot of messing around but eventually I got a letter stating I needed to take 10mg of Hydrocortisone before my appointment and all would be okay.

I took the extra 10mg before my treatment and guess what, I did not collapse after my treatment but my muscles went wobbly, I became dizzy and really unwell. I immediatley took another 10mg and was unwell for several days after the treatment.

Clearly the 10mg had not been enough for my body. It’s funny how there is a set text book amount written down for going to the Dentist. Having researched all the recommendations, It’s always wherever I look 10mg for the Dentist.

But what if I weigh a lot more than the average person with Adrenal Insufficiency? What if my daily dose of medication is more than the average recommended daily dose?

Surely if someone on 20mg of steroids a day needs an extra 10mg before a dental procedure, then someone on 30mg a day might need 15 mg.

At the end of the day, I have come to learn that Textbook dosing does not work for me. If I follow the text book rules, I become extremely unwell and am at risk of an Adrenal Crisis and death.

On November the 5th I’m due to visit the Dentist for a filling once more. I was really surprised that the Dentist knew all about Adrenal Insufficiency. He told me “you need to take extra steroids before you arrive”. I was impressed. I knew this was correct, but the question is how much?

I don’t want to take just 10mg as suggested and then suffer hypo-adrenal symptoms for a few days and be unwell all for the sake of a filling. So this time I’m going to double dose and take 20mg. This should cover the treatment and if not, I have an emergency injection on hand!

Going to the Dentist could Kill someone with Adrenal Insufficiency if they don’t take extra meds before a procedure. However, just like i have to work out how much extra to take for exercise, or a painful period or serious emotional stress, I have to work out how much I need for a dental procedure, and it is a process of trial and error. I have to work out my own stress dose rules.

In my mind I’d rather take too much than not enough. I’d rather stay safer than sorry. Going to the Dentist should be a simple experience but more me, it’s something I have to think about and make a decision as to how much meds I should take beforehand.

My treatment will go one of either two ways, I’ll either be okay or I’ll suffer from hypo adrenal symptoms. I don’t expect to collapse this time and I certainly wont die as I’ll be taking my emergency injection with me. I’m hoping the double dose with be sufficient and then I’ll know for next time what does work because at the moment, I only know what doesn’t.

Angela

Disclaimer: Adrenal Insufficiency is a serious condition which people die from every year. I write blog posts about my condition to help raise awareness. Medical advice should be sought from a professional Endocrinologist when stress dosing as every individual is different. 

19 Comments

    1. Thanks Kerry! It is a nightmare. Trying to get the daily dose right is hard enough ever mind trying to figure out the stress dose! I have been informed by otehrs that it’s the adrenaline in the injection which places the stress on the body…I’ll get one step closer to knowing what I need at my appointment on the 5th Nov.

  1. Angela,

    I just found you by way of The Mighty and I’m so glad I did! I have no pituitary function (surgery, then radiation for a tumor), so I am hydrocortisone dependent (and synthetic thyroid hormone deoendent) also. I have an AWESOME endo, but the dentist thing has never been mentioned….I’m definitely asking at my next appointment because I need to have some work done…I also have 2 artificial hips, so I have to take antibiotics before dental procedures. What’s another 3 or 4 pills I guess 🙂

    Anywho, thanks so much for posting! I’m going to be reading back and getting to know you – I don’t blog at the moment, but I’m pretty active on Facebook! Hope to see you around!

    1. Hi Erica. Thanks for messaging me. Nice to meet you! Sounds like we both have Pit issues then! I have a page on facebook if you wish to say hi do so any time!

  2. Oh my goodness. I hadn’t actually heard of this before until now so it has been really informative. I’m not a fan of the dentist anyway, I hate the needles but it must really add to the stress knowing what could happen. What a nightmare. Hopefully this post will help others so that they can seek advice as well. Thanks for sharing.

    1. This has been an eye opener for me and the post has lead to a lot of discussion on facebook and is helping people to be more aware of AdrenaL insufficiency.

      Angela x

  3. Wow, you poor thing, how scary that must have been feeling so ill and not knowing what was wrong at all. I’m glad you have a diagnosis but it sounds so scary too. Thanks for enlightening me to this condition and sharing your personal story.

  4. This is the first I have ever heard of this condition and I have a few weird conditions myself! How scary with what would be a simple and innocent trip to the dentist ending up with you being as poorly as you were. Thanks for bringing this to our attention and educating us on such a serious condition.

    1. Thanks Rachel. This is not a common or well known illness which is why the health care is at times pretty shocking. When I go to the Hospital, they often don’t even know what to do!

  5. I’m so terrified of going to the dentist, I don’t know what to do. I also know I need to see my primary Dr before i go to the dentist to make sure everything is well. Thanks for the reminder.

  6. I’m amazed, I must say. Seldom do I encounter a blog that’s equally educative and amusing,
    and let me tell you, you’ve hit the nail on the head. The issue is something
    which too few folks are speaking intelligently about.
    I am very happy I found this during my search for something concerning this.

  7. Were you able to figure what dosage worked best for you?
    If so, did it feel back to normal after that?
    I have a 3 year old daughter and is due for dentist appointment.
    Since she still cant communicate well i would like to know more about ur experience with the dentist.
    Thank you very much

    1. Hi Peter,

      I needed to double dose so I usually take 5mg of hydro at lunch and instead i took 10mg on my first dental trip (for a filing) after I was dizzy and weak and hardly able to move so on my second appointment i took 15mg (triple dose) and was just slightly dizzy and wobbly and this was much better for me… so for me personally i will need to triple dose for my dentist appointments when having treatment.

  8. I have a diagnosis of Primary Addisons Disease. In Australia the guidelines are as follows;
    -triple your dose for any illness (i.e. cold, gastro, etc) and for any minor surgeries (i.e. if you only need local anasthetic )
    – for major surgery you need to be given a 100mg injection before anasthetic and 100mg post surgery.

    You appear to be on a very high dose of cortisone tho so that surgery recommendation might be different in your case.

    I notice you post about hydrocortisone. When I was diagnosed in 2005 I started on hydrocortisone and didn’t get good results. My ACTH results were always high. My Endo advised that not everyone responds well to hydrocortisone. I then moved to dexamethasone which was too strong. I now take prednisone/prednisolone which works perfectly for me.

    I recommend you suggest different options to your Endo. They should be doing further investigations if you’re taking such a significantly high dose but getting no results, it suggests to me that your medication isn’t effective. If you don’t respond well to a certain medication then increasing your dose might not necessarily work. Which explains all of the addisonian crisis’ you’ve had. Any more than 2-3 per year is extreme in my experience.

    If the medication is the issue, then the pump might not necessarily be your answer, because you need to make sure the steroids in the pump work for you.

    The other issue with potentially being on the wrong mediction and needing to take such a high dose is that you’ll gain significant amounts of weight. I had this issue when I took the dexamethasone which was too strong. The more you weigh, the more steroids you need. It’s a dreadful cycle.

    It’s also worth mentioning that these meds all have different equivalent doses.
    – 5 mg of prednisolone is equivalent to about 10 mg of hydrocortisone
    – 10 mg of hydrocortisone is equivalent to about 2mg of dexamethasone

    Worth noting I’m not a medical professional, just sharing over 12 years of patient experience. Also there may be differences for Secondary Addisons Disease.

    I’ve been lucky to have great doctors in Australia. I’m disappointed to hear about your poor experiences in the UK.

  9. I was concerned about an upcoming dentist appointment. I am a really low Adrenal Insufficiency person with a good response to hydro-cortisone… I have a UTI, right now along with a fractured tooth, and thankfully with blood work I know that I am getting enough medication in me, as after my morning dose I tend to be a bit high, but considering all the other things I have going on medically as well as school, choirs, legal stuff, I think I need the extra. The doctor gave me instructions to double my dose for the day of the dental work on the fractured tooth, and that seems way to high…. so I am going to go slow… because if you go over what your body needs you collapse too I have heard. So tomorrow I will be doubling my first dose and then watching and waiting to see how things go and playing it by my feelings for the rest of the day. I think it is a better option than doubling all the doses for the day. However good to know that I have the right to take that amount. But you are right it is a personal thing and everyone dose is really different. At least this helped give me some information. It is scary, and most times here in Canada, it is not even known what this is or how to treat it, so it gets even worse. Most times it gets passed of where it is just in your head. I have a complex things with not just the Adrenal Insuficiency, but I have hypothyroidism, and I get Hypoglycemic symptoms if I am even 5 min off of my eating schedule. I have a completely messed up endocrine system, where I believe all areas are hit because of the adrenal glands, so yes I am fortunate enough to even have daily facial hair if I don’t take my cortef (hydro-cortisone). Thanks so much for the heads up on the dental thing even for a filling, I though I might be able to get away from taking extra doses because of it no longer being considered a surgery. I will go slow though I don’t want to have to end up in a ER on an overdose, or underdose…

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