Visit the Endocrinologist
So I attended my Endocrinology appointment and it didn't exactly go according to plan. I did my best to try and get my points across and say what I wanted to say but I was thrown a huge curveball which totally confused me and left me feeling totally upset...but I am now trying to process what on earth happened in that appointment and the best way for me is to write it down.
Here is a summary of what happened:
A New Diagnosis
First thing first. I have a new diagnosis of Human Growth Hormone Deficiency. The Insulin Intolerance test I undertook at the start of July revealed I have this issue. I then underwent an Arginine Test on the 1st of October to confirm this.
I meet the criteria to have daily Human Growth Hormone Injections. I have to wait for an appointment to be trained or shown how to do these injections. I don't know when I will start my new medication but I'm hoping within the next 8 weeks. Fingers crossed. It all depends on how busy the Endocrine Nurse is.
I was told my exhaustion and poor quality of life is most likely due to not producing growth hormone as an adult. I am allowed to take the medication for 6 months. If there is no improvement after six months the medication will be stopped. I was told 80% of patients do improve and feel way better.
I was told there is clearly something not working right in my pituitary as I have two hormones which are playing up from the same area in the brain.
How Do I Feel:
I'm frustrated it has taken many years to get a diagnosis. I'm upset that I've had to wait since July- when they knew what was wrong with me to be approved for medication and I'm frustrated I have to wait even longer before I can start the medication I need.
I'm happy there is something clearly wrong, which might explain my muscle problems and continuous exhaustion.
I'm excited to be starting daily injections soon and hopeful this will improve my quality of life.
I'm scared just in case it does not work.
I'm scared about the fact I will have to inject daily. This won't is a pleasant thing but if it helps me to feel better I am willing to do this.
My Secondary Adrenal Insufficiency Diagnosis
So, when I dd the Insulin Intolerance test, I stopped taking my hydrocortisone at lunchtime the day before the test. According to the results my morning cortisol levels were 200, (they should have been 600) which means my adrenals produced ⅓ of the cortisol I needed on their own during the night!
Um..... I thought my adrenal glands had packed in. I've twice been told my adrenal glands do not work at all yet these results according to the consultant indicate I am making some cortisol, even if it is not quite what my body needs.
As a result, he wants me to have another Cortisol Day Curve Test to see if the 20mg I am now on is too much for me.
I was told there is a possibility I could eventually come off Hydrocortisone and may only need it in the future when I become unwell rather than daily.
I asked if I could have a 24-hour test as I get worst between 6-8 pm at night and the day curve ends at 5 pm. I was told no. I was told the lunchtime test will show how fast the medication/cortisol leaves my system.
I asked if I can do circadian dosing or go on the pump. I was told, No! Because I'm producing some of my own cortisol and only need a small amount of hydrocortisone, (according to the consultant) It would not benefit me to dose according to the circadian rhythm.
How Do I Feel:
If I'm making some cortisol on my own and my adrenal glands are not packed in completely or they have restarted then that is wonderful!
However, I am still not producing ⅔ of what I need so I still need to be on hydrocortisone and I still would like a 24 hour day curve.
I don't see how a 9-5 day curve will benefit me if I am laying down or sitting in a chair at the day treatment centre. It will not show how my medication clears when I am active, parenting, doing stressful things like blogging, writing, housework, walking, exercise, physio etc.
Should I try at my day curve to do lots of activity to show them what happens to my body/cortisol levels during exercise? Should I walk up and down the corridors until I feel unwell so they see what happens to my cortisol when I have done something other than sitting for hours?
Will this day curve actually mean I need to reduce my medication further? Could it be that I have been on far too much medication for the past two years? Am I on too much medication and this is causing my headaches or am I (as I believe clearing my medication too quickly resulting in dizziness, weakness and headaches?). I do not know?
If I need Hydrocortisone which I clearly do- no matter the amount, then I would still benefit from having this medication given to me via the pump/ circadian rhythm dosing to mimic how the body would naturally produce cortisol.
Just because the hospital does not know how to work with the pump, does not mean I should not use it!
Adrenal Crisis
I was told by the consultant that he does not believe that my Adrenal Episodes when I go to the hospital are actually "Adrenal crisis". He said he does not believe I am going hypo with my blood sugar and that my trips to the hospital must be for some other reason!
This DOES NOT make sense to me nor to my husband who sees me collapse. When the Doctor in A and E saw it happen he admitted me into hospital straight away! The endo who saw me in the hospital said it was an adrenal crisis.
If I am not having an Adrenal Crisis or the start of a crisis,
Why do I collapse? Why do I get dizzy? Why do my muscles get weak?
Why does my Blood Pressure drop down to 90/45?
Why do I have a sudden Diaorreah?
Why do I get stabbing pains?
Why do I get the same symptoms that all my friends with Addison's/adrenal Insufficiency get?
Why am I told my blood sugar is low and get asked to eat chocolate and drink milk?
Why does the emergency hydrocortisone make me feel better?
The consultant feels It is not a crisis because my potassium/salt levels etc don't drop dangerously.
How I Feel
I do start to have an Adrenal Crisis when these episodes happen. I know it. My husband knows it. However, after a few hours, I pick up a little because (I make some cortisol myself) which is just enough to keep me from getting worse but not enough to deal with my low adrenal symptoms.
I'll go into hospital will a BP of 90/45 and it will pick up to 110/60 and then an hour later drop back down to 90/45 again and then pick up. This to me tells me I am getting unwell but then the small amount of cortisol I make helps me but then runs out and I go back to square one.
When I finally get 100mg hydrocortisone, I get much better and can walk and function again. The Hospital wants to keep me in when I am 90/45 but when I improve they want to send me home and then when it drops again they want to keep me in.
I am confused. I know this is the start of an Adrenal Crisis, even if it does not go into a full-blown complete one, I still need support and help. I can't be expected to lay in bed at home when this happens and just get through it.
I feel the Consultant is very wrong about this and he has never actually seen me during an Adrenal Crisis. The Consultants that do see me in the hospital actually tell me to increase my hydrocortisone dose because they see it really is an Adrenal Crisis.
What Next?
So I wait for my injection training and to start my human growth hormone medication and hope this helps me.
I wait for a day curve which will probably be in many months as the waiting list is massive. When I do the day curve do I try to mimic my everyday life to demonstrate real everyday life?
Do I now go look for a second opinion? I'd have to wait until January if I want to transfer NHS hospitals as doing so now would only delay the start of my new meds and the day curve.
Do I save up to see a private Endocrinologist for a second opinion about my cortisol levels?
Is the Consultant right and I'm just a confused weirdo with an imaginary illness- which would make my husband confused too as he looks after me and deals with my daily symptoms.
Is the Consultant looking too much at the "Text Book" rather than looking at me as an individual!
The Consultant said when unwell I will still need more hydrocortisone- yet I still don't have instructions as to how much that is or what to do in certain situations. I just have to go by what I think.
So I made some progress but also feel confused about some things. Doctors are only humans and can only guess what is happening based on the blood results they see...but is this consultant wrong and will my life be at risk of another Adrenal Crisis and if they don't believe it is a crisis...could I be at greater risk of dying if they are wrong? and if they are right..what the hell is wrong with me?
Angela Milnes x
About Angela Milnes
Angela Milnes is a Qualified Early Years Teacher who has specialised in Preschool and Kindergarten teaching. She has a wealth of experience teaching young children and is passionate about kids crafts and having fun as a family. Angela has also taught cooking skills and loves to share both family recipes and easy instant pot recipes here on The Inspiration Edit. Follow her on Pinterest!
Oh how stressful and confusing for you and how frustrating the waiting list must be. Why can they not just start you on the new injections now? 🙁 in terms of the adrenal crisis I have no advice, as I have no experience but it may be time to get a second opinion xxxx
It was stressful and my body felt the results of it last night. I'm going to get my injections and move on to a new hospital and save for a private appointment.
I hope you're doing ok and not too shaken up.
It can be so terrifying to get a new diagnosis, but hopefully they will be able to iron out some of the problems you've been having up to now. At least it proves they are still testing you, and still trying hard to work out a strong course of action.
It's so tricky but try and stay positive, lovely
Abel x
I feel like I was thrown in a washing machine and shaken up and down. Got to focus and wait on my injections now and hope they do help me. Also saving up for a private consultation!
Gosh I really feel for you reading this. It sounds like a complete minefield and very confusing to navigate the differences of medical opinion. Fingers crossed that the injections are a step in the right direction. Willing there to be a break through moment for you in some way.
I am a mindfield lol. Yes it has been very difficult and confusing and I now need to move onto a new consultant.
It really is one step forward, two steps back! Hopefully these injections will help. For your day curve, I would definitely walk around a bit, mimic whatever you would do (or want to do) at home. How can the results be accurate when they have you sitting still for 8 hours. No one actually does that by choice on a normal day. Its shocking that two consultants tell you two completely different things!
Debbie
Your right Debbie. I need to stay positive and make a plan for the future. I've heard some of the best consultants are at oxford and in Royal London Hospital but I'm really too far for that so weighing up my options, saving some cash and going to research and find the right place and the right Endo to visit next!
Angela x
I hope you're doing well and stay strong. Must be really scary. Sending much love to you and good luck!
Thanks Ana. I have to stay strong for my child and we have been living like this for 2 1/2 years I can do it another 2 if I have to!
Oh no, this sounds like a horrible experience for you. The stress of not knowing and getting confused diagnoses is often worse than just knowing. Hope all will be okay x
It's frustrating and I think being exhausted and tired made things seem way worse too! I'll get through and keep fighting!
Angela I really feel for you. I suffered for years under a poor consultant who did not listen to me and thought I was a hypochondriac until he eventually did an exploratory op and discovered a very rare problem. It taught me to never give up and that we are the ones who know what it happening in our bodies. Is a second opinion possible? Take care, stay strong and don't stop fighting!!!
Thanks Catie. It is really frustrating but like you say, time for a second opinion and I need to keep fighting to get well!
Oh bless your heart. I hope that things start to look up for you soon and that the injections work well 🙂
Thanks Louise, I appreciate all the support and kind words everyone is giving me. It is helping me to feel much better about it all!
I'm sorry you have so many unanswered questions! It must feel so frustrating - for every answer you get you have many more things you need to know! I hope you get a consultant who you have more confidence in.
Thanks. One day at a time and I will find a way to get through this.
It must be so frustrating having all those questions and not the answers. I think we have some brilliant doctors but there are always going to be human error, keep pushing until you get the answer you know you need
I will do my best it may take months and years but one day i will get treated better!
I really hope you get some answers soon. I live with very bizarre symptoms that no one can seem to diagnose. I have M.E, seizures that are not epilepsy, chronic stomach pains, dizzy, muscle weakness where my legs just refuse to move, swelling of legs, get random bruises on them. I could go on and on. The only test that brought anything up was under active thyroid. I feel pain yet no one can see it. I feel so patronised at some of my appointments. Last week a doctor said it could be three possible conditions or it could just be life, go home and look after your boys! I was so upset for days and wanted to stop looking for an answer and trying to fix myself. After a few days I got angry and thought I will not give up fighting, please keep on fighting it is no way to live feeling so poorly all the time.
Thanks Rachel. I'm sorry to hear you are going through difficulties too. It's not easy... is it! I've been going through crap for 7 years and just really want to get better managed or improved but it is going to take a long time!
Certainly sounds like very mixed emotions which isn't surprising considering what you have managed for so long. And, now that you have some answers, it has caused more questions that don't have answers. I hope that you get all of your answers soon and that the injections aren't too bad x
Thanks. I think the injections should really help...fingers crossed.... it's just been a long jounrey to this point and somedays are tougher than others. I can get through this though! 🙂
Oh it sounds like you are going through the mill at the moment 🙁 It must be so difficult living with these conditions. I totally hear you about doctors, I've written about this myself and it's so frustrating and upsetting when you are not properly listened to. One thing that has helped for me is to document in detail my symptoms and also to email any research I have found to my GP. Hope things improve for you!
Oh yes... this is a good suggestion. I have bought a diary and am recording my symptoms every day. I hope it helps the doctors to work out what is wrong.
Although the idea of daily injections must be pretty daunting, how fantastic would it be to be in the 80% who see an improvement in their symptoms?!
Human growth hormone deficiency aside though, this sounds as though it was a really frustrating appointment leaving you with more questions than answers.It definitely sounds as though it is worth seeking a second opinion, whether NHS or privately. I really hope you get some more answers soon xx
Your absolutely right. This is the one thing I am hoping will help me to improve things. Fingers crossed. Just have to stay positive and have patience.
Oh gosh I am so sorry to read all this. I hope writing it down will help you make some sense of it all. I hope you begin to improve very soon. Kaz xx
Oh it has been a difficult week but I'm slowly getting my head around it all and what to do next. it will take time to improve and I can. I know it!
My goodness. Im sorry you're having to go through this hun & especially with something new now thrown in. Keep your head up - I'll be thinking about you
Charlotte x
Thanks.... it was confusing and not expected and i think i was also feeling so ill and stressed it all seemed way worse. I'll get through!
I know the feeling of going to a doctor and not getting the answers you need. I hope you get better with the daily injections because the life you're having right now it's not comfortable at all! Keep us updated please and I hope you'll feel better soon!
Thanks so much! Now ive had a few days for it to sink in, im feeling more comfortable about it! It s just very stressful at times! Angela x
This is my first time to your blog, so first, let me say Hi!
This is a really interesting post and its made me completely aware of just how much micro-management and constant re-evaluation must go into managing a chronic illness such as yours. Bless you, that alone must be exhausting.
It sounds like you are tackling it brilliantly.
Good luck with everything, Anna x
Great to meet you Anna. It odes indeed require a lot of nonsense and management- hopefully things will improve soon! Angela x
Hello
Oh no this isn't nice, I hope you are ok
What a worry x
Thanks. I'm sure things will improve soon!
Before I got a chronic illness, I believed 100% in the medical field. Now I have been suffering since May 2014, been to 10 different doctors and still do not have answers. I have lost faith in the medical field completely. Every doctor has a different theory and when they can't figure it out, it must be in your head. Such a sad state for all the advances that have supposedly been made, unless you have a sinus or ear infection, your illness is somehow either your fault or psychosomatic.
Thanks. It is hard waiting to get diagnosed and get well. I hope to get better treatment in the coming months and years.
I am very sorry to hear you are going through such uncertainty with diagnosis. I can relate in a way as I have a problem which consultants tell me is impossible to properly diagnose and there is no treatment for. It is very disheartening. But on the upside these new injections could have a big impact and whilst scary it is great they actually have a treatment which works for the majority. Perhaps a second opinion after you start the injections would be a good plan re. the adrenal insufficiency. Good luck and I hope things improve x
Thanks so much. It is difficult and i'm slowly getting there but its not always easy especially when i feel sick so often! I'm still waiting for my injections!
Angela x
This must be a lot to handle.
Stay strong lovely.You can make it through!!!
https://anasdomain.wordpress.com/
Thanks Ana. It's been difficult but I hope to get the support I need soon!
Angela just so you know, the injections are not painful, the needle are only 3/8" long. I can't even feel then and trust me, I hate needles. If you are on Facebook, you should join the group "Adult Growth Hormone Deficiency & Adult Panhypopituitarism." It has been a great source of information for me and you can connect with others that have GHD and AI. I am in the U.S. but I know there are members from other countries too.
Awesome! I dont like injections but if it helps make me better i'll do it! - I just have to wait patiently! Angela
Wow, this is so much to take in all at once and I really do feel for you! The progress is obviously a great thing but obviously all a bit uncertain still so I only hope things are ok for you xx
Sam // Samantha Betteridge
Thanks.. it has been one hell of an emotional roller coaster and it been hard to cope with too but...I'm slowly getting my head around everything and sorting it all out in my mind! 🙂 Angela
Oh Angela you've come away with more questions and no certain answers. I really hope you get confirmed answers soon so you can get the medication you need xx
Thanks Rachel. It can be challenging and difficult but I will eventually get to the point i need to be. Angela x
Angela, It is a ridiculous state of affairs. Sometimes I think doctors forget that we, as patients, know our own bodies best and how we feel. I am constantly knocked back by my GP because NHS doesn't recognise adrenal fatigue as a condition unless it gets to crisis point as it sounds like yours have. I feel cross on your behalf that you have been mucked around and left hanging on for so long. I hope that the endo nurse isn't too busy too see you very soon.
Liz
It is terrible and frustrating but i hope to get well one day!
Is it time to go back to your original consultants with the details given by this private one and see if you can both make sense of all the information? Is there any chance that having these growth hormones, that your adrenal symptoms may improve and in fact, not all of the symptoms that have astronaut to this are actually caused by that and are to do with the lack of growth hormone?
I know how frustrating it can be and you just feel helpless. I went private and got a diagnosis and offered treatment that I can afford. Back to the Nhs and they disagreed and prescribed two treatments that I can't have due to my postcode. 2yrs on. I've still not been treated and am back at the beginning. Sending hugs
I saw a private endo this week and he is going to help me.
Oh love.. I understand the frustration and upset, so sending gentle hugs. I really feel so many consultants look for exact text book case symptoms, rather than looking at the patient and the entire picture. I had a consultant once tell me during an emergency admission that I did not have a biliary blockage because I didn't mimic everything last text book symptom. Despite having had them before and knowing what's what. If it were me and I had the money, I'd seek a second private opinion. It makes no sense to refuse the testing you asked for.
thanks. It can be frustrating I totally agree.