I was diagnosed with Follicular thyroid disease in July. Had part of my thyroid removed. The nine tumors that previous doctor missed for a year and half thank goodness turned out to be benign. I was started on .5 of Synthroid, and did really well except for paying attention. A few weeks later Cytomel was added to help with that. I did GREAT until around 5:30 in the evenings, and it would wear off. At my 8 week checkup the blood showed that I was severely deficient. and my dosage was increased from .5 of Synthroid to .112 because I am sensitive to medication, and they wanted to build up gradually. I was told this is a low dose, and it would not bother most people, but it went haywire in me. I began feeling dizzy for short time the first day I took it around lunch. Got worse and longer the next day, so I called. We played phone tag for a day or two, and my blood sugar was dropping real low, and I was told to cut back down to the .5, but before I could do that because I take the dose in the morning, I woke up with Chest pains, shortness or breath, fever. and I had such a hard time remembering anything for days after the epidsode. Blood showed I should stay a .5 that went well for 3 days, and I began to get really dizzy when getting up out of a chair and when moving around such as walking or going down stairs. I went to the doctor, and found out through an EKG that my blood pressure would drop when standing, and then it would rise when standing depending on the mood. I never fainted. I was sent to a cardiologist who attached a monitor, and did a tilt test which showed that I am having changes in blood pressure but not always dropping, and not always rising. They have pretty much ruled out any problems with my heart. My blood pressure would go from 120/60 to 74/58 with a heart rate of 120. or it would start at 68/58 with 84 heart rate and raise to 94/70 with a heart rate of 128, which they noticed a change, but evidently I felt more awful than perhaps I should with these rates. It has been almost 4 weeks, I have not been back to work because I am so tired, dizzy when standing, shortness of breath, and I cannot stand for longer than around 5 minutes without becoming exhausted. Another test that I had was an Insulin tolerance test because I had hypoglacimic problems before all this started, and this test showed that I have very low cortisol. Still waiting to see rest of test to see if this is Addisons but they think it may be pituitary due to the fact that I also have a history of elevated prolactin (in the 90's) and i currently take Dositnex for that with no tumor. I have had two MRIs in the last 2 years. I also passed an adrenal test in the office. I started Cortef two weeks ago. 5 mg twice daily and that helped for 2 days, and then it quit. When cortisol levels came back deficient, they added .1 of florinef which really helped for 2 days and then it stopped. Friday added an additional dose of cortef which helps in the evenings, but by the time that kicks in it is time to go to bed and you have felt bad for the whole day. I am still dizzy but am learning to live with that, but biggest problem is the MOOD SWINGS AND THE DEPRESSION which is so not me. I get so tired from only doing one thing, and it feels like I weigh alot. Just had thyroid readings Thursday, and for the first time they are normal. Doctor suggested possibly adding an antidepressant until this gets under control, but I do not want to put a bandaid on sadness, when I was never sad before 3 weeks ago. It had something to do with the change in dosage. It felt like I had a stroke because I had such a hard time remembering things, keeping the train of thought, and I felt as if I had a brain fog for days. They have since upped me to .75 of synthoird, decreased the cytomel to one daily, and my counts for thyroid were normal except for the T3, which they told me will have to wait until the rest of this mess is straight. I am at my witts end because I feel so rotten. My legs hurt really bad now, so much that I limp, and I am only 36!!!!!!!!!!! I just feel like my laundry list is growing, and I can't seem to get it through the cardioloigist and endocrinogist head, that although every test possible has been run, that something is still not right........ I was FINE. It feels like part of me died three weeks ago, and I really don't recognize who I have become. I know that I am classically depressed, but I know it is not something that has been building, it is a result of this illness, and I am not sure how I feel about hiding that fact with another medicaiton, but I have to do something. Have any of you ever known anyone who has experienced this, and what did they do. I am considering seeing a neurologist just to make to sure that nothing else went wrong. I hate to be angry at my endocrinogist because she basically saved my life!!!!!! She knew to look for the cortisol. All the tests they run take so long to get the results back. Cortisol counts were baseline 21.2 first draw 15.2 second draw 7.9 Final draw 18.2. My T3 318 T4 1.3. Sorry for the lengthy email but I am a mess!!!!!!!!!!!!!!!!!
Looks like you had the ACTH stimulation test. It shouldn't take a long time for results. Call the endo "daily" & bug them for the results. Make sure they know how sick you are. Put it in writing if necessary & hand it to them. Something on paper usually gets results or at least more notice. Addisons is life threatening if not treated properly & your endo is responsible.
If you do have addisons 10mg a day is not enough so you would not feel well. Treating the thyroid before the addisons would also make you feel lousy.
If you are now taking 15mg Cortef daily (still not enough if you have addisons), take more in the morning than in the afternoon. Last dose of 5mg about 5pm if it doesn't interfer with your sleep. It could also be that your body does not like Cortef. Mine doesn't so I take it's generic Hydrocortisone.
Did they check your electrolytes? See explanation below for primary addisons.
How are you feeling today?
Diagnostic Testing for Addison's Disease
TEST 1: Electrolyte profile:
OBJECT: To determine if the patient exhibits a normal serum (blood) sodium and potassium levels.
THE TEST: A blood draw followed by automated determination of sodium and potassium levels as well as other standard blood markers.
NORMAL RESULT (will vary somewhat from lab to lab): Sodium 135-150 mEq/L; Potassium 3.5-5.2 mEq/L
PRIMARY ADDISONIAN: Will show significantly below normal values of sodium and a elevated (above normal) levels of potassium.
REASON FOR ABNORMALITY: Low or no production of aldosterone from the adrenal cortex. This steroidal hormone regulates our mineral balance and is called a mineralocorticoid. Primary Addisonians lose sodium and retain potassium. Abnormal values here, in additon to physical signs and symptoms, require the next test.
TEST 2: The ACTH stimulation test:
OBJECT: To determine if the patient's adrenal glands can respond to the ACTH message from the pituitary to increase cortisol production in the adrenal cortex.
THE TEST: The test is usually given first thing in the morning when normal cortisol levels are highest. Blood is withdrawn from the patient to establish a baseline (No instructions regarding necessity for fasting). The patient is given 250 micrograms (ug) of ACTH (Cortrosyn, Cosyntropin, or Synacthen) by injection in saline at one time. Blood is drawn at 30 minutes and/or 60 minutes and the serum cortisol level is determined.
NORMAL RESULTS: Normal pre-injection levels of cortisol are 5-25 ug/dL (138-690 nmol/L). The value should double at 30-60 minutes with a minimum of 20 ug/dL (552 nmol/L). PRIMARY ADDISONIAN: There will be no or little increase in cortisol levels upon ACTH injection. Notes: It is stated in several places that a single test of cortisol levels, or even 24 h urinary levels of cortisol and its metabolites, are NOT DIAGNOSTIC! In the normal individual cortisol levels are seen to pulse. Low cortisol production in either the serum or the urine after ACTH stimulation is diagnostic of Addisons disease.
SECONDARY ADDISONIAN (Pituitary malfunction): Low cortisol production can be seen if the patient has "functional adrenal cortical atrophy" due to prolonged absence of normal ACTH secretion. This type of patient would not show the typical hyper-pigmentation of primary Addisons.
REASON FOR ABNORMALITY: Due to autoimmune, or other destruction of enzymatic (biocatalytic) machinery of the adrenal gland, there is no response to ACTH and no production of cortisol and other adrenal steroids necessary for life. If this test gives normal results and the patient has other signs and symptoms then one of the following tests is required.
Thank you for responding to me. I have had a terrible two days. I feel so irritable and annoyed that I cannot even see straight. I went back to the doctor today and I basically feel that they are all annoyed with me. They have run almost every test and it comes out normal. I finally got to the point where I just told her. "I am sorry your paper says I should be fine, but I am not" She decided to check my estrogen and progesterone levels and rerun thyroid counts. If this comes back negative she is going to add an antidepressant along with all the rest of the stuff I am taking. I see a neurologist tomorrow to discuss the terrible headache I have had for 4 weeks. I know that something IS NOT RIGHT, I JUST DON'T KNOW WHAT. The rest of the Insulin Tolerance Test came back and it is not the pitutary gland as she suspected because I passed the ACTH test with saline in the office as you mentioned. She does believe I have Addisons due to the fact that the adrenal counts were way off. She really did not explain what that meant and did not mention what she would do to confirm. Here are the counts hour 1 glucose 89 ACTH 21F Cortisol 18.2 ?GH.1f IGH-1 134f
Hour 2 46cf for glucose ACTH 8f Cortisol 7.9 GH .1f IGF 131f Draw 3 Glucose 49cf ACTH 178f Cortisol 15.2 GH 2.1f IGF 156f Last draw Glucose 61L ACTH 127f Cortisol 21.2 GH 8.1f and IGH-1 157f I really could not tell you what all
of this means and I find it overwhelming that she is not more worried about this part due to all the medicine I am taking. I just don't feel better. I take Cortef ten mg 3 times a day. I take Synthorid cortef and florinef .1 in the morning, another 10 of cortef at lunch, along with 5mcg of Cytomel at lunch, and another cortef at dinner. I also take Dostinex two times per week to help a former elevated prolactin problem. My doctor seemed more preoocupied with the fact that I am still dizzy, still tired, and very moody after 4 weeks of trying to correct this. She did not really mention if she would further test to pinpoint addisons and is convinced that I am on the right dose of medicine because she says she cannot increae this part anymore. I am so DEPRESSED. I REALLY DON'T KNOW WHAT TO THINK. Maybe I need to get another opinion, but she has really tried!!!!!!!!!!!!!!!!! I am not able to do what I could do 4 weeks ago, how can she tell me it is not related to all of this????
I have lost 41 pounds since May but I needed it. I have 30 more to go. I have changed my diet courtesy of my severe hypoglacumia. I have lost about 10 pounds since I have been off for the past 4 weeks. I do not have the skin pigmentation, but I just feel awful, and it is hard to explain what hurts. Still dizzy when getting up, so terribly tired, and most of all DIFFICULT TO LIVE WITH, or will cry for no reason for up to several hours at a time. I also have this headache that is in the center of my forehead that has been putting tremendous pressure. When it hurts I am very moody, or sad, and the throbbing went a way an hour a go, and I feel almost normal except when I stand up and I get dizzy. Blood pressure maintained today, and the doctor does not know why I am dizzy or moody. This epidsode was also bringing sudden drops in blood sugar as well. That has helped since the medicine was started 2 weeks ago.
The headache will either be back tomorrow or the next day, and the roller coaster will start over. I see the neurology guy in the morning. I don't think he will find anything. I had a clear MRI in June. This all started 4 weeks ago when my dose of synthorid went from .5 to .112 and I decreased back to .6 then up to .75. but have still not been the same sense. I just hope it is nothing serious. I am so disgusted that no one seems to find anything except the low cortisol, and they claim now that this should not be my problem with the medication. HELP!!!!! Do you think that this triggered the addisons or was it already there? I am also under a lot of stress which does not help.
I hope you are able to get a second opinion for addisons & your thyroid. Take copies of all the lab work you have already had with you.
You are taking a total of 30mg Cortef. You should have 2/3 of it by about noon or 1pm. 15mg a.m., 10mg about noon or 1pm, 5mg about 5pm or earlier if it interfers with your sleep. You could try Hydrocortisone instead of Cortef in case you are a person who does not do well on Cortef.
Ask your doc if you need more Florinef since you are dizzy when you stand. Keep after your doctors until they get you feeling well. The worst thing we can do for ourselves is just sit home sick & trying to survive each day.
They refused to add more of the Florinef when I suggested that. They claim I am on the maximum dose and that I will swell if they add more of the Florinef.
I saw the neurology guy today and he is going to do a Full Head MRI which I dread next Friday along with a test to see if there was a seizure which I highly doubt. He wants to see me off work until Jan which is most depressing.
He too without talking to the Endo thinks I am depressed, and that may be what is causing the physical symptoms. I KEEP TELLING THEM THAT I WAS NOT THIS WAY 4 WEEKS AGO, and I would just like them to get to the bottom of it.
THE ONLY THING that they have said that remotely makes sense is that I have been through a tremendous amount sense July, and I hit the ground running working 60 hours a week, and my body just said STOP WE ARE TIRED AND CAN'T KEEP UP. I can honestly see that happening because I was determined that this was NOT GOING TO TAKE OVER MY LIFE. It now appears that it has, and I am ANGRY ABOUT that. I don't know who I feel about Antidepressants at this point. If they should add more symptoms than I am already having, I think I would hit rock bottom.
As for the second opinion, the thought of having to re explain all of this for a 8 time to someone is depressing in itself, and frankly I am so irritated with all doctors right now, I am not sure I would listen. Maybe tomorrow I will be more rational.
Another thing I am doing tomorrow is having the pressure in my eyes checked. I am a glacoma suspect from years ago. Maybe that is why my head hurts. THey were also watching the optical nerve in my eye. Maybe it is all linked somehow.
Thanks for listening. Any suggestions would be most appreciated.
I just want to let you know that I totally understand what you are going through. I've been sick for well over a year now with similar complications. I've been picked and poked in ever way, and scanned from head to toe. I'm almost certain that I have Addison's Disease. All of my doctors think that I'm depressed, and that I may be a hypercondriac. So, in an effort to aid me they perscribed antidepressants for me too. Like you, I was never depressed about anything. I had no reason to be depressed. However, I can admit that I am now because my life has completely come to a stand-still. My doctors are doing a **** poor job in getting to the bottom of things. To put it short, they aren't listening to me. The most frustrating thing about this whole ordeal is that I'm unable to do certain things like I use to; simple things like eating, exercising, and work. I have no independence. I'm totally relying on my folks right now and it's humiliating. Not to dismay you or anything, but I really don't have much of a life. But what I've done is taken what I've been going through and look at it as a gift. It's a gift, but also my curse. I have good days, and I have bad days. When I'm feeling good, I say 'thanks God.' When I feel bad, I say 'thanks God.' Yeah, it sucks but it could be a whole lot worse. And what comforts me the most is that when I get to the bottom of this, and I will, I will be a better person. I see it as a true test of mental toughnest and spiritual healing.
There's a phrase that I say to myself each and every day that I got from the actor Matthew McConaughey. He says "just keep on living." Yeah it's corny but it motivates me. Now, I'm not saying that this will work for you but what I want you to know is that you're not alone. There's always somebody else who's going through something, if not worse than you. So take comfort in that. In the meantime, continue being persistent with your doctors and continue fighting the good fight. God bless.
