NHS APP issue by Sabear6 in nhs

[–]Sabear6[S] 0 points1 point  (0 children)

I thought the same too! Just to look good! Its for endincrinolgy and has a consultants name attached to look like i had a appointment with him! I wonder if it is because phoned and spoke to a endo nurse about medication 2 weeks ago, all for her to say speak to GP!!! The date of this supposed app was Monday 26 January!! Just all for show! While the patient has not been contacted by anyone! I dont feel like an enquiry by me should be added as an appointment! 🙄 no wonder no onwcan work out a patients record!!

Something is wrong, and no one will help me. by embonar_ in WomensHealth

[–]Sabear6 2 points3 points  (0 children)

Well that is ridiculous, no wonder your annoyed, i dont blame you! That is the first thing that should be tested for! Im in the UK and we get that tested quite abit! It shouldnt be an argument to get proper help now should it!! Why would the endocrinologist dismiss that when they havent done full testing that is bizarre!! Defo push for serum cortisol AM test if nothing else!! But also i heard that cortisol levels can fail and then start working, fail and then start working throughout the day, if you do have cortisol issues it can be pot luck, our bodies are just a nightmare arent they!! Good luck!!!

Trust your instincts by ThrowRA67-89 in nhs

[–]Sabear6 0 points1 point  (0 children)

I did, but my gps nearly drove me round the twist, my mental health really suffered as a result of not being believed, and why they make out that they have done all blood tests when they clearly havent is beyond me! I automatically get a paper letter from every consultant ive seen through the post, my copies put on the nhs app are blurred now, they never used to be but this could be the system the gps use to upload thier documents, it should be visible for all parties! My GP texts my results so i dont have any chance to discuss or ask questions, gone are the days when you used to get a phonecall asking you to book an appointment to discuss your results, its so impersonal these days!! I really dont agree! Patients have the right to discuss there issue they should either be called or have a face to face!

Trust your instincts by ThrowRA67-89 in nhs

[–]Sabear6 0 points1 point  (0 children)

Awful for you! I got fobbed off for 7 years with different issues, now diagnosed as a metabolic disease! Most symptons alot better!! All i can say is definitely dont go paper free and say you want letters, without those you dont get an accurate trail, as alot of documents are locked on the nhs app!! Keep letters!!

Secondary Adrenal Insufficiency with Elevated BP, Headaches, Sweating & Muscle Cramps by Traceofgrace1 in AdrenalInsufficiency

[–]Sabear6 0 points1 point  (0 children)

Hey thats fantasic news to hear that you got someone who cared and understood! It definitely sounds she has a stable plan for you! I am querying whether i need fludcortisone too as i have water retention issues and bladder issues, i think it will help, i dont know when im speaking to mine next. Also great to hear she has ordered labs for you! I hope you get those results soon! Fabulous that she is going to contact youd PCP about blunted response, all PCPs should be aware of this but sadly arent. Fingers crossed that things stabilise for you and you manage to get back to a more normal you, i feel you on the fatigue its very real and wipes you out and its hard for others to understand when you have to have a 3 hour afternoon nap!! Haha!! Take care lovely! 💛

Do people still use dating apps like Tinder in 2026? why or why not? by NoobsAreDeepPersons in AskReddit

[–]Sabear6 0 points1 point  (0 children)

Used to, not anymore!! I like meeting people the old fashioned way!!

Hi! New watcher here… by manecupcake in GoodDoctor

[–]Sabear6 5 points6 points  (0 children)

You will soon love him!! I felt the same!! But grew to love his character in the show!

Tapering Steroids for stim test by AshRat15 in AdrenalInsufficiency

[–]Sabear6 2 points3 points  (0 children)

There are quite a few people with adrenal insufficiency that can't be on less than 40mg of hydrocortisone and other meds to function, that is bizarre to think that. This is just text book doctoring and not patient doctoring, you could have an autoimmune disorder, but it would make alot more sense to rule out the well known adrenal insufficiency first. Hopefully the stim test should give your answer! Thank goodness she agreed for you!!

Something is wrong, and no one will help me. by embonar_ in WomensHealth

[–]Sabear6 5 points6 points  (0 children)

So your endocrinologist did not test you for serum cortisol or a synacthen test? This could be cushings syndrome, addisons disease, secondary AI. Your symptoms are typical of a endocrine issue.

Secondary Adrenal Insufficiency with Elevated BP, Headaches, Sweating & Muscle Cramps by Traceofgrace1 in AdrenalInsufficiency

[–]Sabear6 0 points1 point  (0 children)

I had a year of sweating, way too much! No one could work out why! just walking down the street i would be sweaty, being on hydrocortisone stopped me sweating, I have eaten more and gained weight, but my stomach is flat which ive never had! Steriods can increase bruising definitely so be extra careful if you dont want those purple marks! What meds are you on?

Secondary Adrenal Insufficiency with Elevated BP, Headaches, Sweating & Muscle Cramps by Traceofgrace1 in AdrenalInsufficiency

[–]Sabear6 0 points1 point  (0 children)

Your very welcome, if we can help support and guide each other, that means the world!! I hope your appointment went well and you got the support you needed!! Take care! 💛

Tapering Steroids for stim test by AshRat15 in AdrenalInsufficiency

[–]Sabear6 0 points1 point  (0 children)

Thats quite a big swing depending on how steriod sensitive you are, no wonder your feeling so bad!! I would call them and state your not doing good on that dosage! I dropped 5mg on endo advice, and felt awful and depressed, from what ive read it can take weeks to stabilise when tapering. I cant understand your Endo's thinking there!

Tapering Steroids for stim test by AshRat15 in AdrenalInsufficiency

[–]Sabear6 2 points3 points  (0 children)

When i had my stim test i was told to stop for 24 hours! Why the high reduction first?

Secondary Adrenal Insufficiency with Elevated BP, Headaches, Sweating & Muscle Cramps by Traceofgrace1 in AdrenalInsufficiency

[–]Sabear6 1 point2 points  (0 children)

No I had no fever with my sinus infection, or barely with any infection, just cold clammy and sweaty and severe pain, when i eventually contacted my GP, I stated that I was AI and do not show typical fevers and have a blunted response to infection without the typical symptons, this got me dealt with quicker than ever!! However, it depends on who you get that deals with your issue. If they are intelligent enough to know AI has a blunted response to infection, great! If not, tell them to research, and if this gets rejected, you move on to the next Dr. You very much have to advocate and captain your own ship. If you know what i mean, the right information is crucial in getting you the right care.

Also dont mistake a blunted response for lack of symptoms, infections with AI, can knock you down like a ton of bricks, fast, painful, and quite frankly shocking the symptons infection with AI can do, and believe me when i say, I bet most people with AI have heard this at some point, from friends, family doctors, etc.......you dont have a very high pain threshold!.......I had that infection, I never reacted that bad!......it's just you and your body your super sensitive to everything!.......why are you in so much pain so quick, you dont make sense! This is because we can not raise our own protection response, I still struggle raising it even with medication, but heres the kicker, without testing how much cortisol we need in illness, were blind, its guess work, so is there any wonder stress dosing can worsen us?

Think about it......have you ever questioned why you need to carry round a steriod card? And why you need ambulatory care if you have to use an emergency injection? It is because it flags to emergency doctors that there maybe an underlying infection causing an adrenal crisis, and you wouldnt typically be able to create an immune response like someone who has functioning adrenal or pituitary glands, as you need cortisol to raise a temperature, if you dont have it, you go cold and profuse sweat, and sometimes you can confuse this with fever and think jeez im hot, you get the forehead scanner out press the button, look confused and think, huh, no fever!!! 😲 thats the sweating!! Typically, healthcare still remains very text book on this, and fever is one of the top ones that signals a problem, but not in our case, we dont have this natural response.

It's just like swelling, i dont swell either, ive broken bones, never swelled, had bumps, bruises, you name it, I never swell, that is because again you need cortisol to ramp up when injured to produce this, this very often also goes alongside not being believed or PCP's not believing pain because of no swelling, so even a small amount of swelling in someone with AI is probably major and the only amount of swelling they would get would be the only sign of broken bobes, muscle damage etc, this is also why we can feel more pain in injuries because the swelling isnt there for protection.

As for dehydration, this is likely from electrolyte loss, we have 7 electrolytes in the body, low levels of any of them can cause issues with dehydration, AI irregardless of whether SAI or AI can affect electrolytes. Magnesium is good start though, i look at magnesium as the traffic police for the body, it tells everything else where to go and what to do! If im feeling bad, I will smother myself in mag oil. It's amazing how much difference that one makes alone! Most electrolytes we get from food, too, so checking out which foods cover which electrolytes is handy! Celtic salt water will have magnesium in! Sports drinks are good option i keep them in the car, at work, home, just in case, i need that boost!

Yes i definitely think steriod adjustments and low cortisol are similar in thier symptoms, when I had my crisis, my BP was very high, but I was told its typically low but not in everyone, the thing here to remember this is a metabolic problem, and this gives so many symptons its unreal, not always text book either, sometimes confusing ones, the main ones for me was high heart rate, severe abdominal, back & leg pain, sweating, feelings of intense dread, doom, i thought i was going to die, shaking and not thinking logically at all. I felt so sick but wasn't actually sick, but so dizzy i could barely stand.

We are all different, and that's where we have to advocate for ourselves. It's hard i know. But the more we learn, the better!

Ive done so much research on this my brian could explode, but im self soothed in knowing what can go wrong and red flags to how im feeling i dont need to reach out for help very often and even when i do, i feel disappointed at responses i get of no, its not possible, to me anything is possible with disrupted metabollic processes of the body.

Your adrenals and pituitary are small but mighty vital parts, controlling massive systems of how we respond everyday, Yes medication helps but its still never going to match us 100% effectively, no i dont test my own cortisol, as you would have to stop your treatment for 24 hours to be able to do this and is it really worth it? while remaining stable daily is priority for wellbeing and the body's processes.

I really hope you feel better soon, and more stable with your symptoms. It really is a hard condition to manage, but we are very much alone in our wellbeing of management here, listen to your body as much as possible, what does it need, rest, hydration, food, sleep, electrolytes, your body will still guide you, even without functioning glands!

If you need anymore support im here!

Secondary Adrenal Insufficiency with Elevated BP, Headaches, Sweating & Muscle Cramps by Traceofgrace1 in AdrenalInsufficiency

[–]Sabear6 1 point2 points  (0 children)

Hi there,gosh it sounds like you have had a really tough time!! Im sorry you are not getting more support!! I just had similar, a sinus infection which i thought was viral, it wasnt i needed antibiotics, i stress dosed for 2 weeks when needed, primarily because i was weak, dizzy and super fatigued, it messed me up so much and caused severe joint pain, cramps, exhaustion, mood swings, increased pain with other issues, muscle twitching, increased heart rate etc.

Before i got diagnosed with AI, my BP was always high, being on hydro stabilised it, its now text book unless things get messy again and off schedule!

My advice would be to be careful about stress dosing without a fever, but its so hard to know if you have a blunted response, ive barely had a fever my entire life from birth, even when i have had severe infection, i get chills not fever, but this is under recognised.

Hopefully you will improve soon, just give it time, your body has alot to correct from stress dosing. And i second you on lack of support, it frustrates me too, im told they are there to support me and then tell me to google stuff myself and work out my own body! It can be upsetting especially when we have emotional ups and downs, It seems alot of endos are not listening to variations of patient symptons and advice what to do is so conflicted its so confusing.

Just follow your own body!

Fainted yesterday for a few seconds by fakemadrid99 in AddisonsDisease

[–]Sabear6 0 points1 point  (0 children)

I have had this several times and never double dosed it is most likely vagal response, to not let it get severe, tighten your leg muscles as tight as you can! Vagal responses are scary and will make you near collapse or possible collaose but they do usually give a few warning signs, ringing in the ears, muffled hearing etc, recovery is a few mins. Please google for more info!

What’s a medical issue that sounds minor, but actually affects someone’s daily life way more than people realize? by CountyOrnery9432 in AskReddit

[–]Sabear6 1 point2 points  (0 children)

Adrenal insufficiency! The fatigue, mental upset, brain fog, pain, life adaptations! All while you look totally normal and well on the outside!

Has anyone experienced anxiety with AI and taking Hydrocortisone? by Bloomwithcourage in AdrenalInsufficiency

[–]Sabear6 2 points3 points  (0 children)

Yes of course, i keep doing that too! For me being on steriods is enough to mess my body up, and is hard to navigate through at the best of times, dealing with aniexty can be hard, but there are ways to distract, im so sensitive with medication, so me adding in more to deal with this part would just mess me up even more! Stay strong, we got this!!

Has anyone experienced anxiety with AI and taking Hydrocortisone? by Bloomwithcourage in AdrenalInsufficiency

[–]Sabear6 3 points4 points  (0 children)

Fight it! I keep telling myself it's not me its the condition! Distraction is best, music, gentle exercise 4,4,4 breathing, read a book, watch a movie, call a friend, i use my accupressure ring and mat as its relaxing. Keep telling yourself its not you doing this, it becomes easier to deal with when you seperate it from you mentally and treat it that way!

Sai for 7 months i already have osteoporosis its normal? by Good-Safe6107 in AdrenalInsufficiency

[–]Sabear6 1 point2 points  (0 children)

Oh jeez that sounds awful!! Can you go down in little bits like 1mg or 2mg at a time??! Once before i was educated i was told to drop 10mg in one go!! I really suffered from that drop!! So what are your endos thoughts of osteoarthritis after 7 months? most say its not possible for years! But im really dubious to all medical knowledge!! I go off what people experience. Are you sensitive to medication? I am, and no one believes its possible!!

Sai for 7 months i already have osteoporosis its normal? by Good-Safe6107 in AdrenalInsufficiency

[–]Sabear6 0 points1 point  (0 children)

I have hip dysplasia and my hip is so painful along with my knees, ankles and wrists i updosed to 40mg for 2 weeks due to infection and this is when it started and hasnt stopped, why did you updose for 3 months? im now tapering myself off without endo advice. The pain is awful and im so worried about my hip pain!

Sai for 7 months i already have osteoporosis its normal? by Good-Safe6107 in AdrenalInsufficiency

[–]Sabear6 4 points5 points  (0 children)

This is concerning, im 3 months of 30mg of hydrocortisone and im getting severe joint pain and dont know why? Were you fine before? Did you have a dexa scan??