Thyroid UK
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Addisons disease questions

Hi everyone. I posted last week about my current issues. I am now getting tested for Addisons (was tested 4 years ago just after total thyroidectomy). I have been demented recently with my health. Some people have said on here could be my tsh as it does tend to fluctuate a lot. But generally it's not going to crazy levels like before (60 etc).

I also had one parathyroid removed too as I had an adenoma on that too.

Anyone out there with addisons and did you have classic/textbook symptoms or just some? Personally I am not convinced I have this as I am as pale as a milk. But do have all the blood pressure issues, crashing during surgical procedures etc, extreme fatigue.

I take all my vitamins. B12 etc all good. All blood counts are good too after my last hospital stay.

Any info would be greatly appreciated.

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It's good your doctor is testing to rule out Addisons. If it comes back negative, I wonder if your doctor has considered calcium deficiency? It wouldn't necessarily show up in your blood. It can cause a lot of symptoms according to the website below and you've had a parathyroid gland removed and maybe damage to others with total thyroidectomy?

healthline.com/health/calci...

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Oh wow @nanaedake this is quite scary reading those symptoms. I also broke my fibula last year from a low trauma fall and am getting a dexa scan this month. I'm only 31. I will ask my gp to check my calcium. Thank you

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I think the DEXA scan is more important than checking calcium in blood as the body compensates for low calcium by taking it from bones. It's great that your GP is checking it out properly. A broken fibula is likely just an accident but definitely a good idea to get it checked. As you're young, you can recover if any problem is picked up early. In the meantime, eat a good diet rich in nutrients. Also, if you have any gut problems, consider ruling out gluten intolerance or coeliac disease while your doctor is investigating things.

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Thank you. I actually got a gi scope last year with biopsies as they suspected coeliac and it was negative.

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Yeah I have Addison's. I did darken up, though not hugely. Only noticeable to me. My symptoms were varied and lots of strange feelings actually. I had difficulty waking up, going to sleep. Lethargic, couldn't handle driving . Got stressed out by little things like being in traffic jam or sudden movements. Thirst too. Bear in mind that you should be off contraception for six weeks before testing as estrogen affects results. X

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Thanks behappy1 glad you got diagnosed. I have had similar symptoms but I suppose endocrine problems can appear so vague. Yes off all contraception. Thank you :)

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Do you have any other auto immune disease or thyroid probs? :)

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Yes I have sle, sjogrens and vitiligo. The vitiligo only started 3.5 years ago. Addison's 8 years ago. Sle Probably since teens and sjogrens 5 years ago. Note that I was already on steroids so some of symptoms were less pronounced. My public & leg hairs fell out and I felt dizzy when getting up from the fall too. I felt so ill all the time. I remember my gums went dark. Liked salty foods.

Ps the hospital told me there is a between Addison and vitiligo.

Pps if you do get diagnosed let me know x

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Wow! You must feel awful having all of those autoimmune diseases. What a shame. Glad you're diagnosed now but that must have taken a long time.

Yep there seems to be a link with the vitiligo. :)

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get tested for pernicious anaemia. ~5% of addisonians also have this form of anaemia. most doctors don't understand the correlation between the two. vitiligo is a characteristic feature of P.A.. I have Addison disease, Hashimoto, and Pernacious Anaemia. These disease in coexistence are known as Polyglandular Autoimmune Syndrome Type I. Anyone reading please feel free to contact me and request more info. I have compiled the several of the best texts available on the subject.

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Great to know this. Please send me any info you think worth reading, I'd be most grateful x

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I will start a short compilation of online texts momentarily. What are you specifically affected by so I know where to focus? Addison? Thyroid? Or are you like me and have everything under the sun? LOL

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Ah! I see your post regarding your medical history! On it!

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If you suspect you have Addison disease refer to this text to learn more on "Early Detection and Treatment Principles". This is the single, best resource I have found for a newly diagnosed patient. You will not be disappointed by this one!

aafp.org/afp/2014/0401/p563...

If you currently have Addison Disease and suspect your treatment could be modified for better results consult this resource.

***Pay attention to information highlighting the possible under-treatment with mineralcorticoid therapy. I have a theory that many patients are prescribed too much Glucocorticoids and not enough Mineralcorticoids. The excess GCs will mask the need for increased MCs in bloodwork. Excess GCs will cause Cushings like symptoms.

ncbi.nlm.nih.gov/pmc/articl...

For information involving the genetic/hereditary nature of Polyglandular Autoimmune Syndromes consult here:

scielo.br/scielo.php?script...

For a quality case report on Schmidts syndrome (PAS Type II) see here:

jofem.org/index.php/jofem/a...

For a interesting look at the relation of EPO deficiency and autoimmune disorders see here:

onlinelibrary.wiley.com/doi...

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This is just the start of my collection. It is nice to know that others yearn for more knowledge of our rare afflictions. This should get your feet wet with some quality information. Please feel free to contact me for any discussion of this material and if you get through this stuff a certainly have more for you! Much love!

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Brilliant - bedtime reading swalls! I will be in touch once I get my head around this all. Much love x

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I was diagnosed with Addisons April last year. My symptoms were extremely tanned skin, severe bouts of diarrhoa and sickness, high heartbeat, no energy, muscle loss,low blood pressure, brain fog. I had attended numerous doctors with my symptoms and they put it down to stress. Was only diagnosed as i went into a crisis, i was 5 and a half stone when admitted into hospital. Now i take hydrocortisone and fludrocortisone and i have no symptoms, never up or down with it.

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Aww Louise I'm sorry to hear that but glad you're sorted now. I pretty much have all those symptoms bar the tanned skinned. I am very pale naturally though. I have vitiligo on my knees but you only see it in summer when my skin goes one shade darker haha. Thanks for your response x

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Forgot to ask if you also have other autoimmune disease or thyroid problems? :)

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I have an underactive thyroid. Had post partum thyroditis. X

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Wow so you have both. I dread to think how you must have physically felt at times x

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I've got Secondary Adrenal Insufficiency, pretty much the same thing as Addisons but from a different cause. i was so pale I looked like a negative lol. I was exhausted, passing out a lot, lost appetite and lost weight. Doing a lot better now on treatment.

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Oh wow it sounds awful. Glad you're doing better now. Can I ask, do you have any other auto immune diseases or thyroid problems? :)

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Nope nothing like that x

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I felt horrific before i was diagnosed with the addisons. Thankfull now i'm on the right medication doses i manage fine. I work full time, have 2 kids and a dog etc so long may it continie x

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That's so good, well done you. I have to say I feel envious at the moment lol. Just waiting this week on the 24 hr urinary cortisol result.

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I'll keep my fingers crossed for you. Hope your results go well. X

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Thank you. I'll update when I know x

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have yo got any scars?they should be darker as nipples for example?i was diagnosed for addison and hashimoto over 4 years ago and i hadn't very dark skin or dark spots in inner sides of hands. Synacthen test proved that I'm an adissonian.

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Thanks for your response. I do have a recent scar from August when I broke my fibula and that is purple at the moment. My thyroidectomy scar from 4 years ago is white. My other scar is on the vitiligo and is pure white. I have never been a tanner.

Did you get diagnosed with both at same time or was one before the other? Also, what were your symptoms that led to diagnosis if you don't mind me asking.

Thanks :)

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