Just trying to get some info on anyone who has Addison's disease if possible please?
Ive recently undergone testing for this (awaiting results). Ive seen Dr peatfield who point blank says he thinks I have Addison's disease, I went to a second endo who said he thinks I may also have it. The only thing is I have not lost weight. If anything I have gained. Though I'm having thyroid looked into and it could just be water retention.
I get insatiable salt cravings, extreme thirst, my body temperature is very low, but I get extreme sweating, my blood pressure is low but goes really low, I have the most extreme fatigue, I have slight pigmentation on my forehead but my armpits go really dark, and I get dark freckles on my forehead, chest and face. My face looks slightly tanned compared to the rest of my body. (The pigmentation issues only occurred 2 years ago, prior to this I had extreme pallor) I think I go hypoglycemic too so whilst I don't have an appetite I do need to eat a lot even tho at times I will have violent vomiting.
Has anyone else not lost weight prior to diagnosis. My abdomen goes so big it looks like I'm heavily pregnant. Aswell as face, upper earns and legs. I don't really understand this as I thought people with addisons lose a lot of weight prior to receiving treatment. I think I may have an issue with potassium. I don't seem to be able to eat foods Rich in potassium (potatoes), I wondering whether anyone also has issues with potassium? Also once medicated does anyone's potassium levels go too low? Do you need to supplement?
Any advice would be great
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ChristinaT
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I have not been tested for Addison's. However, the fact that you have all the symptoms except the weight gain may just mean that you have a second condition. For example, I am gluten sensitive - never tested for celiac - and when I eat gluten I swell as though 6 months pregnant.
The symptoms drs learn and cite are not reliable. They used to think that if people were overweight they couldn't be celiac, for example. This was quite wrong.
if you react to the nightshades, which is quite common, I would suspect some gut problem is playing in. I would exclude celiac, if you are eating gluten still, for a start.
Yeah I figured as much, I'm fine with gluten, ive had intolerance testing and ive had an endoscopy with testing from that and I have no issues with it. I'm fine with bread, potatoes are problematic, though I seem fine with the rest of the nightshades. I always wondered why potatoes seemed an issue and then I thought the potassium content could be an issue, if I do indeed have addisons.
Prior to my problems I was very slim, i had no weight to lose so to speak. It feels metabolic in nature tho whatever the weight/bloating issues. Thyroid resistance could be an issue and I have spoken to someone on here regarding this so that's something im going to look into.
Also I have low B12 and folate and I would also gain even more when these run/ran low as opposed to vice versa. (I know a lot of people lose weight instead). I'm just a bit perplexed that's all.
When at my lowest I was convinced I had Addisons… I don’t (thank goodness ! )
Your potassium intolerance could be due to a deficiency in mineralocorticoids that would disrupt the reabsorption of sodium and excretion of potassium (so it ends up elevated) . I had high potassium (yet to be retested) and still have weird things going on including a bad taste and gooey saliva.
A deficiency in glucocorticoids can result in insulin insensitivity, so disturbances in carbohydrate, fat, and protein metabolism. Without enough cortisol, insufficient carbohydrate is formed from protein and we get hypoglycaemia and decreased liver glycogen.
I am obsessed with blood glucose levels ! ! ... lol ....as thought I was heading for diabetes at one point but through concentrating on adrenal health, diet and using GlucoFit by AllergyResearchGroup I have recovered good blood sugar levels although still have terrible salt cravings, excessive thirst and frothy urine ! ! ..
I had hyper pigmentation from elevated bilirubin caused by iron overload (Heamochromotosis) which went after iron was reduced. In Addisons it is due to increased ACTH levels resulting from low (or nearly non existent) cortisol causing high beta-lipotropin which stimulates melanocytes and the hyper pigmentation so classic in Addisons.
There is secondary adrenal insufficiency (low ACTH or CRH) but I think you only get the hyper pigmentation with primary (Addisons). However, read as much as you can and don’t get fobbed off with inconclusive diagnosis.
We think of Addisons as a crisis condition but it can develop slowly and possibly all symptoms overlap (hence I explained my experience above)…. Apart from elevated RT3 your thyroid test results were ok ……. but non-existent cortisol is a pretty definite Addison diagnosis and very serious.
I really hope you don’t have this but it will be interesting to see your results. I don't know about weight gain..
Wow thank you so much for the info. The second endo I saw thinks I may have POTS,and explained about the mineral corticoids and mentioned I may need them....
My blood sugar is usually low, though it was on the high side last blood test (first time) so it seems it may be erratic. My iron levels seem okay. My ferritin was 50, but my seeum iron and transferrin saturation were low at one point. No one could seem to explain this though ive read those markers can indicate deficiency even though my feeritin was fine?!?!? Confusing
What does an elevated RT3 indicate?
I hope I don't have addisons tbh but I do become extremely unwell, I keep explaining to them I have these 'attacks' or flares where I honestly feel like I'm fighting for my life. Ive had this condition chronically for 13 years and I had bouts of it prior to this, then during this time these 'attacks/flares' or whatever they are (crisis's if addisons) started happening frequently.
Ive had random cortisol checks in the past and they have normally been okay. I didn't like whatever they injected me with though, during the synacthen test. Literally within 30 seconds to a minute after the injection, I couldn't stop shivering, tears ran down my face, my chest felt like it was going to explode, I struggling to get my breath, fortunately this only last a few minutes.
My blood pressure reading prior to the test was low (always is) the took it again shortly after the injection and it increased somewhat (though still low) they then took it again 30 mins after and 60 mins after and both readings were lower than what it was prior to the test.
I'm also in the middle of doing the adrenal saliva test as per Dr peatfield a request (though to be fair he was pretty adamant I have adrenal failure) and thinks I'm not making any of the hormones. Hoping to get results from all of this combined within the next few weeks so I will report back....
I was referred for a POTS evaluation myself but declined as believe too many of our weird symptoms over lap with other conditions and although obviously POTS is a real condition, I feel it is sometimes used as a convenient diagnosis where you risk all future health problems being attributed to POTS without any further investigations being performed.
Everyone has a small percentage of RT3. I read that approximately 40% of T4 is converted to T3 and 20% converted to RT3. When T4 isn’t being utilised properly (for whatever reasons) this excess is converted to elevated RT3 and is thought to prevent further thyroid hormone from working. That is one of the reasons why we get good thyroid hormone test results but are still symptomatic.
Endos are not usually interested in RT3 results, eliminating it or investigation the root cause to prevent a reoccurrence .
Low sex hormone and nutrients//iron all have negative repercussions on good thyroid hormone synthesis. Your synacthen test sounds horrible … poor you. Sometimes antibodies attack the adrenal cortex so reduce hormone levels. Have you had antibodies checked ?/
That's exactly how I feel re POTS. I told the endo I saw that if I did have POTS it's certainly not the only thing going on with me, it can't account for the amount of different symptoms I experience and also the severity of them. Obviously Not being derogatory to anyone with POTS, it's just that it seems so convenient to confirm this without looking into other explanations.
I always did think I had a thyroid problem tbh, more recently I experienced swollen neck and tongue along with the suspected adrenal issues ive had, which makes things even more confusing hence I got the bloods done because I wanted to know what all my thyroid markers were. I'm also going to be doing the urine test as per Dr Peatfields request, though I'm not sure what that will come back as.....
I was diagnosed with severe PMS/PMDD a few years ago that seemed to be another issue which stemmed from all my existing issues, I always felt it was hormonal/metabolic issue I have.
Ive had antinuclear antibodies tested and they said I don't have any, they the only autoimmine ones I've had aswell as the ones on the thyroid test I had recently.
I know my lumphocytes have been out of range before aswell as another marker regarding my white blood cells (can't remember which one) but that seemed to be in conjunction with when I experience my flares/attacks. That was a while ago and nobody seemed bothered about it.
I do know ive had excess protein in my urine, my blood sugar comes back low, the iron markers I mentioned earlier, low B12, low folate, creatinine has come back below range, I questioned this and was told I had good kidney function (well they assume it means that) my albumin is at the top of the range, not over but literally at the highest marker within the range. My T4 previously was around 14/15, only in my last flare attack it increased somewhat. I have unexplained oesteoporosis. It's all a bit of a mystery. Ive had all Gastro tests available and all are okay.
Also I have a really bad time with taking meds, the last attack/flare more recently was from taking a multivitamin!!! I have trouble with taking antibiotics and antifungals, these seem to cause these attacks/flares as did my menses. Ive been investigated for porphyria and they said I don't have it, though that's really really difficult to diagnose.
Seems my vitamin/mineral levels decline rapidly during/after these crisis episodes
I am glad your doctor is doing the 24hr saliva test, from what I know this is the most definitive test in terms of what cortisol your adrenals are actually producing. The test for Addison's, apart from being really hard on the adrenals, shows if your adrenals CAN produce the required cortisol but not necessarily ARE. Once you have your saliva results you can treat accordingly. Even if you don't have Addisons you may have such exhausted adrenals that you need hydrocortisone therapy. My daughter had to start on HC therapy, after a saliva test confirmed really low cortisol levels, so we could not actually do the ACTH test for Addisons, but I suspect she was born with it and we didn't realise for 18 years. She had all of the symptoms you have and has Hashimotos too, so she did not experience the symptom of weight loss either. HC therapy made such a difference to her life. I understand people feel scared when faced with HC therapy but if you need it there is no other way and boy what a difference it can make. My daughter always had problems with electrolyte imbalances too. Low sodium and high potassium can mean you need to have your aldosterone and renin checked and may need a mineralcorticoid (florinef is what my daughter has). However getting your cortisol corrected is the first step. Have a read of the great info on rt3-adrenals.org, it will really help you understand all things adrenals. Good luck and take care
Thank you so much for your reply. I'm glad to hear your daughter is doing better now. I have no idea regarding the addisons, ive just completed the saliva test which I will send off tomorrow (this wasn't offered via nhs) im just hoping I havent messed this up in anyway as I had to sleep before as I was so exhausted but then this was before the last saliva sample. I really hope I can get to the bottom of this because currently im housebound and I haven't been out of the house for three months (apart from a hospital visit) may I ask does your daughter sweat a lot? Feel worse during the summer months?
I am sorry to hear you are so unwell, but you are heading in the right direction with your testing, and we are here to offer any support you need. My daughter Georgie has been on her journey for so long that it is difficult for me to remember if she excreted more sweat than normal prior to treatment, I do remember her being heat sensitive, but now her adrenals are addressed she actually feels better in summer ( I think because being hypo makes you cold all of the time). In fact at one point before t3 therapy she couldn't sweat at all (another hypo symptom). If it is warm she does need to supplement with more celtic sea salt in her water throughout the day. I think this is also a part of the sodium/potassium imbalances, as it may be for you too. Do you have orthostatic hypotension? This is an indicator of struggling adrenals, as is hypoglycaemic episodes, as cortisol controls your blood glucose levels. Let me know how you get on and if you have more questions. Please remember there is hope
Dr peatfield said I had orthostatic hypotension. My body temperature is low, but I will be sweating also, and that's when I feel at my worst, I describe it as my brain feels starved of oxygen. During the attacks or flares of whatever I'm experiencing the sweating is so bad im literally soaked, especially of a night on my back, and back of my neck, I feel really hot but the sweat is cold. I have suffered really bad with it all this summer.
It sounds as though you have some aldosterone/renin issues too, there are some home tests on the rt3-adrenals.org site, have a look at them. Oxygen hunger is a hypothyroid symptom. Also it is more than likely that your hormones are not in balance, all of these functions are intertwined and one imbalance sets off a cascade of others. However, one step at a time and you will get there. It sounds as though your Dr Peatfield knows what he is doing. We live in Australia so I don't know of him, however it is really difficult to find a doctor who knows about these complex issues, so stick with him and ask lots of questions and request all of the tests you need - do not accept no! Take care.
A ferritin of 50 sounds rather low. Assuming it is not in some unusual measurement, I think you could take it higher, maybe to around 80. It won't be the reason for your pigmentation.
You are doing v well to research and fight for a diagnosis when u r so ill. My bet is Pearfield, who will have seen many cases before, will be right. I hope so because you need an answer.
My ferritin was 75 a few years ago and then I supplemented but ferritin was raised to about 110 so I stopped. It was to get my Serum Iron levels up and transferrin saturation. They are the two that drop, and at the time I was experiencing symptoms of low iron. Ice cravings and red meat cravings. They tell me ferritin is the best indicator of iron status however I was told my iron serum levels were too low 😕 even though ferritin was fine. (Was confused by this.)
My results are back from the test but I won't know until I see my Endo next week. But as you say I have a feeling I'm going to be dealing with Dr Peatfield instead. I'm dreading my appointment, mainly because I'm scared of being told 'there's nothing wrong with you, all results are fine'. Don't get me wrong I don't want to have addisons but it's frustrating when time after time im told everything is fine when it's not.
I'm fine with gluten, ive had intolerance testing and ive had an endoscopy with testing from that and I have no issues with it
Just an anecdotal comment on this issue...
I had an endoscopy a few years ago, complete with biopsies being done. I was told I had "mild gastritis" and nothing more. I was negative for coeliac disease and helicobacter pylori. I was convinced then (and now) that they hadn't been able to look far enough down my intestines to find the part of me that was often excruciatingly painful.
Because I was told I didn't have coeliac disease I didn't give up gluten. I didn't see the point and thought it would just make life difficult for no purpose.
Early last year I decided to give up gluten as an experiment. It is often recommended on here for people with high thyroid antibodies. Mine never have been positive (another reason not to bother with going g-f). But I (regretfully and with lots of resistance) gave up gluten anyway.
The result was extremely surprising. I didn't have any obvious reduction in gut pain immediately. But I discovered after a few weeks that I was finally absorbing iron. I'd been supplementing prescription-strength iron for nearly two years and still hadn't reached mid-range. But within a few weeks of giving up gluten I actually over-shot the middle of the range and ended up a bit higher than I wanted to be.
Also, giving up gluten improved my temper (immensely!), reduced my problems with balance, and helped reduce my staggering problems. It turns out that I probably have a condition called gluten ataxia. The effects of gluten problems aren't always restricted to the gut - the brain gets damaged too.
Even if you don't think you need to give up gluten it is worth experimenting with (100% ruthlessly - it isn't possible to be almost gluten-free and expect anything much to happen). Just remember, if it has no benefits or you don't want to keep it up you can always go back to eating it again. It isn't a life sentence.
I have up gluten a while ago for a few months. I ate paleothic and found it helped and I had more energy. It wasn't just gluten I gave up it was potatoes, sugar etc. It did have a positive effect, and it's certainly something I would consider doing again long term. However I was unable to continue it because of the severe thirst, carb, sugar, salt cravings I experienced and still do. It wasn't even me giving in for a moment of weakness, my body was literally screaming out for the bad stuff. My appetite is usually ravenous, well the cravings are severe, not so much actual hunger but I do consume a lot, either for salt, sugar. I did eventually give up on the diet stuff because I was becoming quite hard on myself for not being able to keep up the good eating so to speak, but I know it's because my body is crying out for something while I'm still unwell and not medicated. I will be so interested to find out what the problem is so I can piece all of this together and figure out why certain foods are problematic and why my cravings are so bad.
I think I may have figured out the cause of my suspected adrenal/thyroid issues. (My next visit to endo is 2 weeks tomorrow for results of adrenal test). I think it's possible/probable that I may have Late Onset (non classical) Congenital Adrenal Hyperplasia. Has anyone heard of this?
I was told I had high LH levels back when I first fell unwell, so I then had a scan and was told I had PCOS. (Wasn't insulin resistant, at that time anyway) so they never followed this up. It was just left 😒. Also as a child I was quite tall compared to other children but then I abruptly stopped growing at 14 (im 5.2ft tall) everyone else continued to grow but I didnt. I actually remember this and felt puzzled by it. Ive also got premature oesteoporosis. (Unexplainable) I had no issues regarding puberty per se (thank god) but I did seem to start earlier than most, I was definitely more womanly looking than most girls my age.I then had a phase of my periods stopping (wheni seemed to stop growing), my hair became very thin (has always been unusually thin). In terms of hirtuism, I do have to shave my legs and armpits daily, tends to grow really quick and I do have to have my upper lip waxed, though fortunately it's not really noticeable to others. I had massive issues with progesterone pre menstrually, and CAH is something to do with a defect/fault regarding a progesterone enzyme or synthesis in conjunction with adrenal output. (Sorry not very good at explaining the specifics but I hope you get the gyst).
Ive read that this causes adrenal problems and needs to be treated similar to someone with adrenal insufficiency. (So salt wasting (alderstone) problems can occur as can problems with cortisol.
Just curious as to whether anyone else has had experience with this? Has anyone had this looked into as possible cause of their adrenal problems?
It's quite worrying if someone has got this and they are being dismissed by the health professionals. From what I can gather an ACTH test is what they would use to diagnose this condition. However im guessing if this is suspected they're not necessarily just measuring cortisol and alderstone. I think progesterone levels have to be measured aswell during the test.
I will definitely be mentioning this to my endo next visit because I feel with my history of symptoms it definitely warrants further investigation. It will be very interesting to see how all this turns out....
Hi Christina,sorry to hear you are so unwell. I have Hashimoto (since 1983 when I was 13) and in August 2015 I was diagnosed with Addison's Disease. I find very helpful 2 online Addison's support groups - one is UK group with online forum addisons.org.uk and there are also Facebook groups.
I have been very ill because of Addison's but once I found the right, knowledgeable Endocrinologist and got right treatment, I improved very much.
Recently I read on Facebook Addison's group that some people don't loose weight while ill with Addison's and before getting diagnosis and starting treatment. I lost lots of weight and had all the symptoms of Addison's but GPs still missed it and misdiagnosed it,long story, eventually everything got sorted.
Glad to hear you have good and helpful Endocrinologist.
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