Symptom check? Help!

Hormones
1

Hi Guys,

Totally new to all this stuff so bear with me if this isn’t the correct way to go about getting some answers. I apologise in advance for the essay.

Basically, I have been feeling pretty miserable for quite some time now with a range of symptoms that I just cannot imagine to be “normal”. I have been to my GP many times over the past few years and after countless ‘full blood counts’ - no indications or diagnosis other than “oh it could be CFS”

I was diagnosed with “the worst ever case” of hypothyroidism my then endocrinologist had ever seen, back in 2008/9 but after 3 years of Levo, my levels are now showing normal. 

I work in the health service and someone had mentioned Cushings Syndrome for me to look into. I mentioned it to my GP and was told “oh no, that’s very rare.” 

After looking up symptoms etc, it’s fair to say I have SOME, but not the more obvious moon face or striae? 

A long list of the symptoms I have are:

Muscle weakness 

Fatigue

Difficulty falling asleep despite feeling exhausted

Constant feeling of tiredness/no energy/weak

Headaches, vary in severity but seem very frequent.

Excessive sweating - always too warm

Bruising extremely easily

Acne, face and body but particularly bad on jawline 

Swelling/rounding on one side of face 

Heel pain/tightness

Shin splints 

Stomach problems - IBS like.

Poor mood, anxiety, depression, irritability (not normal for me)

Sometimes rapid resting heart rate 

Palpitations 

Weight gain

Backache 

Heavy Periods 

Pale or slightly Blue lips 

Breathless easily and slow to recover from any exerction

Very sensitive to light 

Sore back of neck and shoulders 

Sporadic Pain in sides at waist level

Again, massive apologies for the essay but if anyone could let me know if this sounds anything like cushings and if not, maybe signpost me elsewhere? It would certainly be appreciated! I’m just about ready to give in to the title of fat and lazy...

2

Without the moonie face and buffalo hump it is doubtful its cushings. The weigh gain is it excessive? Like over 100 lbs rapidly. I went from 110 lbs to 276 lbs in 6 months or so. I was eating baby food and throwing it up. Pheochromocytoma..look into that..

Pheochromocytoma is a relatively rare tumor of the adrenal glands or of similar specialized cells outside of the adrenal glands. Pheochromocytomas secrete catecholamine hormones (adrenaline and related hormones) that are responsible for the characteristic symptoms. One thing to look at.

However your symptpms may be 2 or 3 things that need to be diagnosed, but i do not feel this is cushings.

3

Have you looked into fibromyalgia? Some of the symptoms sound like that but also like cyclic said the phetoctynoma (excuse my spelling) that’s another possibility... I hope you get some answers soon xx 

4

Thank you both for your replies! I just feel that these days you need to have a fair idea what is causing your symptoms before your doctor will listen. 

My weight gain has not been anywhere near as excessive. I have gone from a healthy 9stone7lbs to around 13-14stone but over the course of 2 years. 

My face is definitely rounded but I think that’s with the weight gain? 

I did a quick google check on Pheochromocytoma, my only query is - my blood pressure has always been normal when checked? One of the nurses I work with checked my pulse when I was sitting down and having palpitations and she felt I had a very rapid resting heart rate. 

I have been made to feel like a hypochondriac lately because there appears to be nothing wrong with me? I just feel that my constant headaches, fatigue etc can’t be “normal” in someone my age? 

5

I think the GP covered that when he suggested I have CFS, he said both are difficult to diagnose. 

Thank you very much, I hope so too. Xx

6

Hi.  I am so sorry that you are having all these horrid symptoms.  The stomach pains could be IBS or Diverticular related.  I have Diverticular Disease and find that BUSCOPAN helps with the cramps. Some of your symptoms do sound more like CFS I must say.  Most G.P.'s have had no experience of Cushings and are often scared to try to diagnose.  As you work in the Health Service can you get an appointment with an Endocrinologist who should be able to do tests to rule out Cushings.  All of us have different symptoms, no two Cushy's are the same.  I had excessive hairiness as well as some of the other symptoms.  Do keep on at people until you get a diagnisis.  let us know how you get on.

7

Thank you for your reply Vicky smile yes GP thinks IBS, I have a few prescription meds’ which alleviate the symptoms unless I am particularly anxious. My anxiety doesn’t have an obvious trigger but it goes particularly for my chest and stomach and honestly it makes me feel like staying in the house to avoid it. 

I just don’t understand these mood swings because it is so unlike me, I’ve always been the joker and sociable one and people are starting to pass remarks of late regarding how I’ve “changed”.

I’m awaiting and endo appointment however the waiting list is approx 18months. I have noticed more hair at the sides of my face/jawline but can’t say I’ve noticed anywhere else. 

I’m aware I sound like a total moan, perhaps it’s something like Therapy I need? Xx 

8

The mood swings are hard to understand and cope with, hopefully you have good family support.  As for therapy I do not think anyone could help you if it is Cushings other than another Cushie!  I was lucky that whilst doing a clinical trial for Cushings research I met another lady who had been diagnosed with Cushings.  She lives near where I have a mobile summer home and we meet every week or so.  Her symptoms were not the same as mine and her meds now are different but we are always there for each other if we have a duvet day!