Urgent help - recent diagnosis with Addisons

[shellyanm]

Hi,

Just about a month ago I was diagnosed with Addisons. I was sick for over 9 months gettign progressively worse and I suffer for hypothyroidism as well. My doc upped my meds on thyroid wihtout recognizing he was making the adrenal function worsen - but finally a month ago, a doctor told me what I had. I was fainting in the mornings from the low bp - typically 80/60 and my legs have become so weak I am unable to walk or stand for very long. I am unable to do simple functions in life at the moment and it makes it challenging for me to keep my high stress job as an attorney. My brain does not function the way it used to and I had brain fogs very often, unable to concentrate or think clearly. I started having very dark pigmentation in my hands and feet. My feet are so swollen, I am unable to fit any shoes. I have swollen abdomen that makes me just look fat - but it pains and feels very unconfortable and my face has also become very round. I am so exhausted I was sleeping 20 hours and still feelling exhausted. But since the diagonosis and the cortisol treatment, the doc also immediately stopped the levothyroixine. But recently reintroduced it and lowered the cortisol. BUt I find in times of stress, I have no cortisol and not sure how to effectively up the dosage if I need it. My leg problem has not been alleviated and has become worse. I have extreme muscle pains in the morning especially. Can someone please help. I am having a meltdown trying to manage figuring out the complexities of this disease and am so sad and worried about never being able to function again. Please give me some guidance and feedback on your experiences.

Shelly

[shellyanm]

Also - the old doctor tried to convince me I was suffering from depression and he needed to put me on paxil. He also gave me 200 times the Iron saying I had anemia. This iron I later read has a bad effect on my problem. Can I sue this doc for incompetence? I begged him to see an endocrinologist or someone who was a specialist to deal with the thyroid problem, and he did not see the need for it. Said they would not see me because I dont really have a problem. Now I find out , I have this problem, and was in a crisis by the time I got diagonosed. This doc left me to suffer for over 9 months without helping me and making me worse. I kept telling him I was swollen and my clothes nor my shoes could no longer fit and that I had never gotten this dark in my life and everyone was asking me why I seemed so dark. He never believed a word of what I said. Now this other doc has diagnosed me with this and after reading about it, I cried when I realized I at least knew what was wrong with me. But I am so overwhelmed by this disease and what to do.

[Wanda]

Shelly,

Sorry you are not feeling well.  Please tell us what the doc has prescribed for your addisons,  how much daily & how are you splitting it.  Times of day & amounts each dose.  

There are many who suffered with undiagnosed addisons for months, years or die before it is figured out.  Very sad as a few simple tests can be very helpful.  So many are told they are just depressed.  There are not many doctors or endos who know much about addisons so it is good that you are seeking help from others who are living with it.   The docs go by the book which isn't very helpful to us in our daily living.  We have to know when to stress dose to stay out of trouble.

Did the doc use the ACTH stim test to diagnose you?  Did he check your sodium, potassium, testosterone & DHEAs...(just to name a few of the things that should have been checked)?  

Helpful to have a file at home with copies of the results of all your bloodwork or other related information.  We must see the results for ourselves as doctors tend to say "normal" when it may not be.   You will need an emergency kit to carry with you.  I could go on, but will stop here.

Wanda

[shellyanm]

Thanks so much for your reponse Wanda. The doc who diagnosed me, made a mistake with the initial blood test and they did not do the right blood test. But he said my body was in such a weak and crisis mode, and sympomatically, i had this disease, that I needed to be treated right away. So started me on cortisol - prednisol. At two 5 mcg in am, and another two at night. Then my bp still was kind of low , but many of my symptoms went away. Then he upped it to three times a day and I felt even better, my bp eventually got to 124/85 and that was where i felt the best. but the leg problem never eased and i still had much muscle weakness. he said it was the thyroid and he had to reintroduce it. he gave me back the 100 mcg of levothyroxine. Since I have been taking both, the levo and the cortisol - I dont feel as well again. Also he cut back on the cortisol and I have many days when there is much stress around me and I dont know how to up my dose to make me deal with it better, but i will immediately become sicker with radiating pain in my legs and my head feels heavy. So now, the only dose is in the am, and i wake early, like 2am at times, then wait til 7 to take first dose and take other at 4pm. so lots of hours where i dont have the cortisol and i feel my body start to feel different. also, i asked him for the emergency kit, he did not give it to me, said i just needed the bracelet and all it needed to say was i had this disease. but that is not what i read, i read you should carry the emergency kit with u and your bracelet needs to say the dosage you need to take. but it seems i still have trouble finding someone who can take care of this properly.

[Wanda]

Shelly,

I am not familiar with prednisol so unable to compare. Does your prescription bottle actually say prednisol?  Maybe someone else knows about it.  I can't suggest increases for the leg pain & etc. not knowing the prednisol, but if you split your dose differently it may help.  

Everything I say is simply my "opinion" based on my own experience or what I have learned from others.  Always check with your doc if you are not sure about something you want to try.  

A more common relacement cortisol is Hydrocortisone (generic for Cortef) or Prednisone.  I would request Hydrocortisone (most commonly used).  Don't know where the docs find the uncommon stuff to prescribe.  You need 2/3 of your daily dose by about noon or 1pm, depending on when you get up.  If you are primary addisons you should be taking Florinef (regulates fluids/sodium/potassium) also.  Usually 1/2 tablet to start, with first Hydrocortisone dose after getting up.  

My cortisol dose is 20mg hydrocortisone daily.  I take my thyroid med while still in bed somewhere between 4 or 5am.  First dose of 5mg hydrocortisone (HC) about 6am, still in bed.  5mg HC when I get up about 7am along with florinef.  5mg HC about noon & 5mg HC about 4pm.   I don't take my first calcuim for the day until noon to keep it away from the thyroid med.

Many do OK on only two doses a day.  For me it would be way too many hours between doses.  I took 3 doses a day for many years, but like to split as above now.  I'm retired so not a bother for me.

Are there any other endos available to you?  You do need the emergency kit. The prescription is for the solu-cortef (100mg ACT-O-VL) liquid on top, powder on the bottom.  The syringe I have is a 3ml 22g, 1 1/4.  Some others have a bit smaller needle.  I had to tell my endo I was going camping many hours away from medical help to get the kit.  Looking around this forum you will find the addisons manual which has much info.  

It is not easy getting the right help fast enough if you go to the ER.  They often don't even know what to do & start giving tests before giving the cortisol we need.  I carry a letter in my emergcy kits from my endo explaining how to care for me if in crisis.  Think there is a letter here on Dusty's forum you could print.

Hopefully others will be here soon to give you more help.

Wanda

[Dottie]

I promise that you will feel better with the right meds. Make sure that you are under the careful watch of an endocrine doct. It might take a year or two before you and your doctor finally find the right med dosages that works for you.  If there is any way that you can cut back on work hours, do it. Make getting well your top priority.  Your story is practically identical to mine. Please visit if ever you are in Baton Rouge. I was diagnosed with Addison's, depression, and hypothyroidism over 20 years ago. It's great to be alive and to stand up without fainting and throwing up. Dottie

[shellyanm]

Hi,

I am so happy I found this website..and so sorry for everyone who has to live with this disease. But support from those around you and from people like you go a long way to making you feel less of that sick worried fear deep inside you..that you will just die one day because the docs will get it wrong.

Prednisone is the correct drug I am taken. That was a misspelling. I just saw another edoc. doc. He is pulling me off the thyroid and going to do some tests for the various sodium, potassium etc. levels. He said he had to determine which type of addison's I have and did not even feel that the thyroid was a problem because i am just border line , never tsh above 7. So he said I should not be treated for it unless over 10 tsh. He said i should take 10 mcg in am and 10 in pm. so that is my new dosage. i will see him again in 2 weeks. he does not think the leg problem is related to addisons. does anyone suffer with radiating pain in legs, numbness and swelling in feet - numbness and tingling all over my legs all the way up my waist.

He is sending me to a neurologist. I did ask him for a medical kit, said all i needed was to have the cortisol drug with me, this assumes i will be conscious if somethign happen. He did say all i needed was a letter to carry with me saying what disease i had. and this would be sufficient. but i dont trust it. especially not living in the caribbean. i recently returned from the US and he said there are not many cases here at all - if any.

[shellyanm]

Do I need Iodine? Are there any foods that make you feel better? The weight gain has become a problem - apart form eating healthy and little - I am hoping my legs will allow me to excercise again one day. I swear, if I feel good enough and am able to move again - I am training as well and going to be so happy to do normal things again.

[Terca]

By the way, having just come off thyroid surgery myself, my surgeon and endocrinologist believe in treating any TSH over maybe a 3-4 because women especially report experiencing thyroid symptoms at that level, and that is the cut off recommended by the national endocrine society of something or other.Especially if you have any other auto immune diseases, including celiac, addison's, etc... the fact is your thyroid can experience chronic thyroiditis and the inflammation over the years can create damage to the thyroid which would require medication intervention in the 3-4 range... so definitely do some further research on TSH levels... 10 sounds "like woah" to me as a treatment recommendation cut off.....

[Wanda]

Shelly,

If you are taking 20mg prednisone daily you are "extremely" over dosed.  This amount can cause big problems much like if you weren't taking enough.  Please clarify as I am very worried about you if this is the dose.  You do need to ask for hydrocortisone in like amount so you can get yourself down to a normal dose.

Your doctor is wrong about your thyroid.  You need treatment.  TSH should not be over 2.  I keep mine just below 1.  The doctors will make you very ill if you don't speak up & tell them how you want to be treated.  They just aren't as smart as a person would believe they should be.  I can't imagine how you feel with a TSH that high.  

Wanda

[ShannonD]

Shelly,
I am sorry you are having to go through this.  Going through diagnosis, and then proper medication management is tough.
I wholeheartedly agree with everything that Wanda, Terca, said.

The medical community really needs to have raised awareness of addisons.  It HAPPENS!!! They need to know about it and make the diagnosis.  Unfortuately all to common that it is a delay in diagnosis.

If you are on 20 mg of prednisone a day, you are over dosed.  I personally had bad side effects from prednisone (made my headaches worse, seemed to poweful, gave me skin sensitivity) I far prefer the hydrocortisone.  I have less side effects, and it has been easier for me to figure out how much I need.  The down side of hydrocortisone is that you have to take it more often daily.  I find that it starts to wear off in about 4 (to tops 6) hours after I take it.  So I will take it 4 x daily.  Largest dose in am with 2 to 3 doses after that. Below is a wikipedia reference about glucocorticoids, discussing relative potency, so prednisone is 3.5 to 4 x more potenet than hydrocortisone.  Too much glucocorticoid, and you will have side effects from the medicine, too little and you will get the addison's sypmtoms.

http://en.wikipedia.org/wiki/Glucocorticoid

Are you on florinef?  Have they checked your aldosterone? Or is that what they are trying to find out now?

I also agree with the girls that your thyroid should be even if TSH is as high as 3 to 4.  I think many on this site will tell you that they feel best if the thyroid is directly in the midrange of normal (1 to 2.5 for TSH).  This also assumes that your pituitary is working, so they need to check the T4 level as well (and that should be in midrange of normal. )

I had horrible headaches, (head pressure really), difficulty moving my eyes, and felt like I had dropped about 20 to 40 IQ points.  The florinef and hydrocortisone made it better, but I did not truly start to have days without head pressure until both the glucocorticoids and thyroid were adequately replaced.

You will be rapidly becoming an expert in this condition, and know your own body.  No matter how well intentioned a doctor may be, they will not know exactly how you feel, because text book reading is only an approximation.  Many gals on this web site have seen Dr. Friedman in LA.  On his website, goodhormonehealth.com, under "contact us" 3/4 way down the page, there is a "Physicians List" which has a list of many docs around the country who have traine d with him.

There is another web site, which I had run into years ago....which back then I thought was a little weird.....and now...I am amazed at how accurate I think it is about a lot of things. (NOt that I believe every word.) "stop thyroid madness", has been interesting for me to reference.  There is information on that site about adrenal gland disorders, and it talks a lot about the interplay between the adrenals and the thyroid.

If your back and leg pain does not go away with proper medication treatment, then it needs to be worked up further.  It could be a consideration to do just a plain x-ray (or later MRI) to make sure you do not have a bony abnormality or disc issue.

Hope you are feeling better and better.
Shannon

[shellyanm]

My dose is 20 mg, not mcg like i said - but 20 mg - two tablets of 5 mg each in the am and two in the pm. Is this too much? Today I feel terrible. I am exhausted and cannot sit or stand too much. My head feels heavy and my eyes dont focus as well. I feel like lying down all the time. This continues and I will not be able to work tom. I have work to do today to make up for what I was unable to do on Friday and I am still unable to do it. I am just so tired. Tried the salt , not helping. These docs give me new meds and then leave me for 2 weeks and no one ever gives me their cell in case i am sicker. My legs are so bad today I almost had to crawl to the bathroom in the morning. I could not get out of bed and mom was asleep in the other room so I had to try to go, but almost fell down, my knees feel like they are breaking in half cause of the pain, esp in the am. i tried to take one 5 mg , i already took two in the am. but i dont feel good today. i did not take the thyroid like he suggested. he is going to test the tsh after a few days once the levo wears off.

[Wanda]

Shelly,

I strongly suggest you go to the ER "NOW" to have your electrolytes (sodium/potassium) checked & get IV fluids.  You should NOT be having these problems.  Addisons symptoms can be serious.  Go by ambulance if necessary.  

Yes, your dose is too much, but you may be having problems from not getting any Florinef & thyroid med.  Prednisone has no Florinef benefit in it.  If you were taking Hydrocortisone you would be getting some Florinef.  Your situation sounds very serious & you really need to know what your sodium & potassium levels are & if you are dehydrated.  Be sure to get copies so you can post the results here.  

Your dosing is not right.  You should have more in the morning than in the evening.  Are you sleeping well at night?  What time do you take the second dose?

Are you drinking enough water?  Can you tell if you are dehydrated?

Wanda

[shellyanm]

Hi,

I am going to a lab this week to check the potassium and sodium levels. He said he needs to check before giving me the Florinef. I will ask him about the Hydrocortisone. Maybe I will need to go back to the US for care. Does anyone know any good docs in Florida? Please recommend some good docs for me in either Florida or NY and I will set up appointments and go. Will they see me without a referal or without being my primary care person? I hope so.

[shellyanm]

I am drinking about 4 glasses to 5/6 a day. Should it be more. Cant tell if dehydrated or not. But I sweat a lot here of late as it is very hot. So maybe need more water. He is sending me as well to a neurologist tom. So hopefully someone can track down this problem.

[dollsie]

Hi Shelly,

I agree with everything the other gals have said, and do think it would be wise to get your electrolytes checked at the very least. Imabalances with these and/or minerals can make you feel absolutely horrible. It's important to keep a close eye on things, especially since you've just started treatment.

Sometimes it's very difficult to tell the difference between symptoms of steroid under-treatment and over-treatment. When my steroid doses are too low, I feel exactly like I did pre-diagnosis and with my ACTH stim tests. But when my doses have been too high, I've gotten horrible leg/knee pain, blurry vision, symptoms very similar to what you're describing. I found out later that I had very low Potassium and Calcium levels, and now I have osteoporosis and degenerative arthritis (I'm 29 years old) presumably because of long-term steroid over-treatment. It's not my intention to scare you or anything, but your doctor really needs to be careful about how much steroid you're on. 20mgs of Pred/day is too high especially if you're not on too much thyroid med.

Maybe reinstating the thyroid meds at a lower amount and titrating up slowly would be a good idea. For some Addison's people, their hypothyroidism improves slightly just after starting steroids (this is known as "transient hypothyroidism of Addison's Disease"), so it's possible that you may not need as much Synthroid/Levo now as you did before. Just a thought. Balancing thyroid and adrenals can take a while. Many of us on this site have dealt with similar issues, and it can be a tedious and frustrating process. But things will eventually work out.

Everyone is different, but I did not feel well on Prednisone either. I think HC is the ideal drug of choice for many reasons. I can't take it because of hypersensitivity and metabolism issues (I take Dexamethasone) but wish I could.

TSH really should be around 1.0 or so. The new (1997) AACE guidelines say that 0.3-3.0 is the "normal" range, and that most women feel best between 1.0-1.5. Here is a link to the AACE site: www.aace.com. Addison's throws a bit of a wrench into things, and I've spoken with several AD people who say they feel best with their TSH slightly elevated - but really it seems like the Free T4 determines how we feel. TSH is a finicky number sometimes, fluctuates with time of day and overall state of health, among other things. When my hypothyroidism was diagnosed, my TSH was only 6.0. But I had severe (dangerous) symptoms of long-standing undiagnosed Hypothyroidism. The level of TSH does not correlate with symptoms, and your doc should be aware of this.

I'm sorry to hear that you're having a rough time. Like you said, it's a relief sometimes just to communicate with others who share this problem. Personally, I feel like I have more control over my situation when I understand it. I also find a lot of comfort in reading others' stories. A delay in diagnosis of Addison's is unfortunately way too common. But you're not alone, and feelings of resentment and fear are normal. Recovering/rebuilding/rebalancing take time and lots of patience. Keep listening to your body and don't be afraid to ask for (demand) help when you need it. This might be one of those times. If I were you, I'd get some levels checked sooner rather than later.

Take care,
Leigh

[ShannonD]

Shelly,

Wanda is making a good point about your electrolytes.  With Addison's it is possible for you to have a deficiency of glucocorticoids, which would be sufficiently replaced by your prednisone (over replaced).  But you can also be deficient of aldosterone, if you are, your electrolytes, namely sodium and potassium will still be off.  If your potassium gets really high, it can cause cardiac arrythmias.  If you have any sort of muscle twitching, palpitations, or extreme mucsle weakness, you defintely need to go to ER right away to get it checked, and as Wanda says, it may be a consideration to go to ER anyway.  

The low sodium causes a feeling of dizziness, head pressure, confusion, and it can get worse, the more water that you drink.  If you do have addisons it will be difficult if not impossible to remain hydrated with water alone, until aldosterone (florinef) and glucocorticoid (prednisone of hydrocortisone) are adequately replaced for your body. I too was very swollen in my abdomen, but not "hydrated".   I was retaining fluid where I should not, and I did not have enough fluid in my veins (intravascular fluid, thus low blood pressure)

I survived on 1 to 3 glasses of salt water a day for a month, before I started to take the meds. If I drank regular water, it no longer kept me hydrated.  Before starting medication, and despite drinking salt water, my sodium got very low, but my potassium did not get high, but everyone is different. And it is very important to have high potassium identified and treated.

Do you have any idea what your electrolytes were?

I looked on the goodhormonehealth.com web site to see if Dr. Friedman listed any doctors in florida or new york, which he does not.  THere is one in Dallas.  But that is certainly not your only option.  Perhaps you can google: "top docs miami" or "top endocriologist miami" or same for NY.  I know there are some medical schools in the carribean, if there were an endocrinologist they should be able to help you...but it is probably best to come to the states.  It typically depends on your insurance as to whether you need a referral.  BTW, once addison's is diagnosed, the meds are cheap.

Do not wait to see a specialist to verify what your electrolytes (sodium, potassium, calcium are)


I too just was recently diagnoses (this summer).  I felt profoundly miserable!! and only got on the 'right' doses of meds slowly and through some trial and error.  The closer I get to the "textbook" treatment, the better I feel: florinef 0.05mg, hydrocortisone (close to 17.5mg daily divided 10mg, 5, 2.5), about 3 grams of salt a day, and adequate thyroid replacement (TSH 1 to 2), and I had my "sex hormones" (estrogen, progesterone, testosterone checked).  Testosterone is made in adrenal gland in women.  Mine was very low, so I have replaced (female) dosage of that as well.  I am not saying this is what you need, just sharing my experience.  Also, this summer, when it was really hot, I took more like 0.075 to 0.1mg of florinef a day, and would up my salt intake.  Of note, when I initially started the meds, I had alot of fluctuating pressure in my head.  Now that I am consistently taking meds at dose my body seems to need, my head feels normal.

Hang in there!! You will feel better.  It takes persistance, patience, self advocacy, and a good doc.  Oftentimes some trial and error to get meds just perfect for your body.  The folks on this web site were extremely helpful to me. I hope you have the same experience.  

Take care,
Shannon

[shellyanm]

Ok. a doc we know is coming over tomorrow morning and doing all of the tests that the doc required , incl. electrolites , coritsol, creatine, ACTH and FBC. etc. Then he will rush the results in the lab. I will also see a neurologist tom. re the leg problem. Shannon, reading your email, you do sound very similar to how I am feeling, esp the way my head feels. I can never really describe it. But I do have the blurry vision and my head feels heavy. I do feel better when I have salty stuff but then I worry about the water retention so stopped eating as much salt. Because my stomach and face were so swollen. I cant even fit into any of my clothes. It is very depressing. Well, hopefully, once I get the tests this week, we should know more. I only took two (10 mg) in the morning and the one 5 mg later in the day. As you guys scared me a bit on the dosage.

[Wanda]

Shelly,

So happy to hear you will have bloodwork done tomorrow.  Remember to get the copies to start your home file.  It will prove valuable later.  

Dropping by 5mg is too much at once.  Any tapering has to be done slowly.  2.5mg would be safer.  You should only taper once every 5 to 7 days.  Dropping your dose by too much will make you feel worse or could cause a crisis.  

You are swollen because of your high dose. It causes Cushings symptoms.  I gained 40 pounds when first diagnosed because the endo had me on the max replacement dose.  He should have known better when I started gaining.  That was before meeting others on forums & I gained some addisons knowledge.  It is very hard at first, but you will soon have everything the way you need it & you will feel much better.  We are all so different.

The ACTH test is not of much value after starting steroid treatment. I haven't had one since being diagnosed in 1998.
I would guess your knee/leg pain is from addisons.  I am worried that your potassium is too high & the sodium too low.  This would just mean you need florinef.  Getting on Hydrocortisone would help too.  You need to continue the salt intake as drinking water without adding it will just flush more salt.

Wanda

[Wanda]

Shelly,

Here is the link for the Addisons manual.  You will find it very helpful.  Hope you are feeling better today.  

 http://www.addisons.org.uk/info/manual/adshgguidelines.pdf