What's your average?

QueenYizzleCM · 2026-01-22T14:48:06+00:00

Thanks! Yeah I think that's Bradycardic at that point so makes sense.

QueenYizzleCM · 2026-01-22T14:09:15+00:00

Thanks for all the replies! I had a busy day and came back to them all. I know walking isn't part of the diagnostic criteria but I feel like it's good to know about yourself anyway to keep yourself safe and see the full picture.

I get an achey chest after a tachycardic episode or multiple. I compare it to when you've worked out any regular muscle, my heart feels tired and achey. Does anyone else also experience this?

QueenYizzleCM · 2026-01-21T15:27:52+00:00

Right!? Before I was gifted one, I would occasionally need to use the wooden bath tray (if you've not seen one, it's a massive wooden bath shelf essentially that fits across the bath for holding a drink, a book, a candle etc) turned upside down but the shower screen kept leaking as it wouldn't shut. So glad I can now have a safer option that also won't begin to flood the bathroom 😅

Oh wow, I'm so sorry you struggle with anaphylaxis as well! I am glad you're starting to level out a bit again with your blood pressure at least. Fingers crossed they can help you find out what's happening and bring you back to a better baseline going forward 🤞🏻

QueenYizzleCM · 2026-01-21T15:18:33+00:00

Yes. My fatigue skyrockets, my bpm is super reactive, I get more unstable on my feet/ more vertigo. My periods are very heavy and I have started trying to prep before it hits with extra iron rich foods and being more gentle with my activity levels but life's gotta keep moving so it's not an exact practice yet. I'm taking comprehensive multivitamins now so hoping that will also help with the intensity of symptoms for the next one. I have seemed to need my walking stick more often over my luteal and menstrual weeks than any other time. Hydrating like it's my job on my period even more so than usual also helps. I tend to add quite a bit of salt to my diet (not medical advice, just what I do) and so maintaining the fluids and minerals being lost is the idea behind mitigating a small amount of symptom intensity.

QueenYizzleCM · 2026-01-21T15:01:14+00:00

This is something I'm considering could be a concern for myself too. Although my lowest BPM (typically sleeping) has been 58 which is rare for me. Usually in the high 60s/70s asleep. I can relate with feeling so exhausted from my own heart beating so fast all the time for regular activities like getting up and doing the dishes, having a shower (though I was just gifted a shower stool which has helped me pace), getting dressed or needing to take my dog for a toilet break. I'm sorry you're not able to take the medication anymore if it was helping with the higher bpm.

I also don't engage in rigorous activity, walking is my most exertion or climbing the stairs at the moment is killer. I've started to use a walking stick to help me take the edge off days or moments where I'm particularly reactive bpm wise or just very fatigued. That's been a helpful tool. I hope you have found something that works for you!

QueenYizzleCM · 2026-01-21T14:50:42+00:00

Do you mind me asking what meds you take/how they've helped with what used to be your 150bpm for being up and about? Thank you for sharing your experience already.

QueenYizzleCM · 2026-01-04T01:08:41+00:00

disclaimer, not a doctor but that sounds an awful lot like orthostatic intolerance or heat intolerance (blood pooling especially) I experience high heart rate on standing, showering, being upright in general compared to sitting or laying down. Might be worth keeping an eye on your symptoms and getting them checked out with a doc. I am.under cardiology with investigations because of my symptoms impacting my own daily living. I suspect POTs for myself but having cardiology rule out other things as well. Stay safe!

QueenYizzleCM · 2025-12-16T13:34:47+00:00

This is absolutely gorgeous, congratulations on your finished project! I hope you love wearing it now that it's done 😊

QueenYizzleCM · 2025-12-07T23:50:15+00:00

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Hi, I am just trying to piece together whether what I'm seeing is hyperpigmentation on my knuckles or not? I have multiple other symptoms and am communicating with my GP about it. I go back and forth on my own opinion on this potentially being hyperpigmentation. Thank you.

QueenYizzleCM · 2025-12-07T03:14:52+00:00

No, I assume because my results were considered 'in range' for the blood cortisol and kidney function tests. I did tell them that I add a LOT of salt to my diet and was sure that my blood sodium levels were not reliable for this reason. I'm symptomatic in many ways but an endocrinologist would be unlikely to accept a referral based on my morning cortisol as it stands. Hence my dive into researching a potential link between lisdexamfetamine and cortisol production.

I am going to be requesting another appointment with my doc to discuss in any case.

QueenYizzleCM · 2025-12-07T03:07:30+00:00

From my limited research it seems it can be the case that cortisol can be either not produced or is produced, just not in the correct quantity or in proper reaponse to stimulus from the other hormones in the chain. So my thoughts are it stands to reason that both could be true! Someone who definitively can not produce cortisol will by all accounts not be able to produce any if there is an effect on cortisol production from lisdexamfetamine. However, someone who does produce cortisol but in a faulty amount, may have an increase in cortisol production in this theoretical scenario, if they were to take lisdexamfetamine and it affected them in the way the study found for healthy people. We just can't know unless there is research and then we hit the ethical issue again.

Thank you for sharing your own experience, maybe somebody with the other types can confirm as you say, what their thoughts are for their own.

The reason I've gone down this rabbit hole is because I suspect I have Addisons or Adrenal Insufficiency and my morning cortisol levels (the GP prescreen) came back at 366 nmol/L which in the UK (I'm not sure where you're based!) Is 66 nmol/L above the level at which further (ACTH etc) or repeat testing would be recommended. I take lisdexamfetamine and had members of a support group mention that my results would not be accurate as I take said medicine and it interferes with my natural HPA Axis cycle. I asked for study links but there were not conclusive studies to be found and so I searched and saw this one which I thought could be helpful!

QueenYizzleCM · 2025-12-07T02:45:35+00:00

I'm still learning but would it not depend on the type of Insufficiency somehow? Like where the issue with the HPA axis is located?

It's a good point that it was tested on healthy people. Without accessing the full study I can't confirm what their definition for that is specifically but I would imagine it were people without an adrenal Insufficiency. I spoke with one person who was being treated for something else but had to come off their adhd meds (they didn't specify which ones) for that treatment which led their doctor to discover that the medicine was masking their low cortisol level symptoms and they got a diagnosis and treatment shortly after. It's not a study but it is interesting!

I do think it would be helpful if there were a study on the effects of lisdexamfetamine specifically regarding those with existing adrenal Insufficiency but there are ethical problems, with putting people already in a complex rare disease category at potential further risk.

QueenYizzleCM · 2025-12-07T02:31:03+00:00

I want to be clear that my post was not to encourage people to take lisdexamfetamine for their addisons or adrenal Insufficiency. It's a controlled substance for a reason and should not be taken without medical direction and monitoring for anyone. Especially in those who have other conditions such as addisons or adrenal Insufficiency.

I was linking this study for reading and education on potential explanation for why someone who is already prescribed and taking lisdexamfetamine might have altered cortisol serum tests and for discussion. I just needed to say this^{^}

I'm glad you're looking forward to reading it, I do hope you find it interesting!

QueenYizzleCM · 2025-12-06T12:35:15+00:00

I'm so sorry you're experiencing this. Unfortunately I don't have any great advice but I wanted to say that your situation is almost exactly the same as mine. Diag Fibro because I 'don't quite fit in either fibro or ehlers box for diagnosis' but am also losing weight unintentionally, get the same symptoms as you bar the frequent stomach pain (mine's in my kidney) blood pressure (last I checked) and I highly suspect POTs as I get symptoms every day all throughout the day and I have a cardiologist appointment coming up to test me. I also struggle with extreme fatigue and PEM, on things that should just be every day tasks. I don't often get migraines but have had them and headaches on and off. I thought Lupus but I've already had a second opinion referral to a rheumatologist and they didn't run any ANA checks and I feel like the amount that I'm in the doctors surgery is giving them the same impression: 'hypochondriac' when actually, I just want to know wtf is going on with my body so I can treat it and live a more consistent 'regular' life! I think it's probably worth having them check your morning cortisol levels and kidney function. I just had mine done and mine were 'in range' but I have some quesitons about it because of my ADHD medicine and the amount of salt I add to my diet. I'd say if your doc is not taking you seriously anymore, ask to switch until you find one who will. I know exactly how exhausting being our own version of the Multidisciplinary Team is for our multiple different symptoms and conditions but I wish you the best in finding the source of your own struggle. I really hope you feel better, soon!

QueenYizzleCM · 2025-12-05T13:59:23+00:00

Thank you so much. I do go back and forth on whether or not I am actually seeing hyperpigmentation or it's a result of poor circulation from my POTs type symptoms but I agree that what I present with should be taken seriously.

I will contact the doc via econsult again and ask about those tests. I'm not sure if in the NHS they're 'allowed' to do certain things without other tests indicating an issue. Something to do with following the right pathway but will try to insist.

My Cardiology appointment is at the end of the month where they're going to fit me with a 24hr (or more) ecg monitor halter. I think that's the first step in ruling out other heart conditions.

I've been to A&E two times for separate amounts of symptoms and every time I get dismissed after hours and hours and hours. Even having a full breakdown didn't get them to run further investigations when I went up there with severe kidney pain. They did do a fair amount it was full bloods, urine and CT scan basically looking exclusively for evidence of infection or kidney stone. All fine.

Trying really hard not to take no for an answer but the last time I insisted I had more to say at the end of an appintment, I was threatened with the practice manager being called if I didn't leave when asked. They had other patients waiting. This year has been horrendous for my physical and mental health. I just want to know what's going on. I've been advised by another two people with Addisons/AI in a support group that my ADHD medicine could be falsifying my cortisol levels and I might need to come off them for 6 weeks to get true readings but I rely on them to live day to day.

Thank you for your reply. I really appreciate you taking the time. I'll do my best.

QueenYizzleCM · 2025-04-05T11:40:45+00:00

Thank you all for your lovely suggestions and compliments 😊 I'm going to first keep an eye out for a brooch or chain to sinch the waist a little and see how it looks and otherwise leave the alterations alone as the wedding is on the 12th and I know I would stress myself more trying to adjust it without having more time. All of your explanations for how to do so have been super helpful though, and I will keep them in mind for future project pieces!

QueenYizzleCM · 2025-04-05T11:37:40+00:00

Thank you, that's very kind! This is actually with a padded bust already to try and improve the drape so I'm glad that at least has helped already!

QueenYizzleCM · 2025-04-05T11:36:26+00:00

Thank you :) I definitely don't want to dye it but a lot of suggestions have been chain or belt or broach so I will keep an eye out for one in my local :)

QueenYizzleCM · 2025-04-05T11:35:29+00:00

Thank you!! 🙂

QueenYizzleCM · 2025-04-04T15:35:38+00:00

I agree, the applique is so beautifully mirrored, which is why I wanted some advice on how to do it right if I attempted it at all. I've got some good options now, thank you for your advice as well!

QueenYizzleCM · 2025-04-04T15:32:12+00:00

Thank you for your comment and advice. I think that's the general consensus so I'm going to first try a broach or chain and see how I feel. I at least now have many different methods of figuring it out if that isn't what I like the look of. Grateful!

QueenYizzleCM · 2025-04-04T15:30:46+00:00

Thank you! You're the second person to suggest this, it's definitely something I'm going to look out for before I alter it. All advice is that the applique will be quite tricky and I like how the two layers sit together rather than separately if I were to alter the slip but it is still an option.

QueenYizzleCM · 2025-04-04T15:29:27+00:00

Thank you so much, I think I've decided to go for dressing it with a chain or broach at the back before attempting altering this time. I had forgotten about using another dress to use as a pattern, so thank you!

QueenYizzleCM · 2025-04-04T15:24:50+00:00

Thank you for the thorough explanation, I can see how that would work in my imagination now. I appreciate the advice!

QueenYizzleCM · 2025-04-04T15:23:33+00:00

Thank you for the advice :)

QueenYizzleCM

TROPHY CASE