Hello Everyone. I am sorry if this gets really long winded but I am truly at my wits end. I am not human I am a walking blood chart. My doc doesn't listen to symptoms at all and I am super frustrated. All my adult life I have felt kinda off with it just getting worse in my 30's and now in my early 40's I have had enough. I am going to start standing up for my rights instead of being treated like a I am crazy or making myself believe my symptoms.
I have hypothyroidism. I am currently on 105 mg's of Erfas's Thryroid. Just recently doc lowered my dose from 120 to 105 because I was showing as mildly hyper. I begged her not to as I knew my symptoms of fatigue, brain fog and not being able to "find my words" in conversations would get worse, again. On 120 mg's those symptoms got better (not perfect) but better. I am about to cry because after 2 weeks I am slipping again and cant find my words at least 15 times a day. I am waking up even more tired and feeling like my whole body is about to slip right of my chair. I get lightedness or a weird kinda anti gravity feeling when I walk too. Its hard to explain.
Anyways, after bugging her about my fatigue she decided to send me for a cortisol test, last december. Which came back low enough for her to tell me she didn't know how to treat me and I would need to see an endo and she was surprised by the results as she was sure if anything came back I would be cushing's.
Well almost summer and still no endo appt. So she sent me in for more tests. This time everything from sodium to LH, FSH, dhea, cortisol, growth hormone and tsh.
She got a much better cortisol test back and was smiling from ear to ear because that was her lifeline and she pronounced me just fine. My cortisol jumped to 378 pmol/l. She was delightedly happy and went back to the idea of lowering my thyroid meds (which she has been harping about for some time) My TSH btw is 0.06 mu/l the range is (0.38 to 5.5)
So I walked out of her office deflated but then got mad and asked for test results from this last batch of blood tests and yup my cortisol seems normal this time around BUT my other hormones etc at at the very end of the low range (unless I am totally reading them wrong which is possible) and that too me is enough to warrant further investigation as I don't feel human at all.
Follicle stimulating hormone: 1.9 iu/l <9 iu/l
Luteinizing hormone: 2.6 UI/L <13 IU/L
Prolactin: 24.8 ug/l <25 ug/l
ACTH: 2.3 Pmol/L <15 Pmol/l
Growth Hormone: 0.05 ug/l <8.0 ug/l
DHEA Sulphate: 3.1 umol/l range: 0.7-11.7
Urea: 3.0mmol/l range: 2.5 to 7.0 mmol/l
Creatine: 59 umol/l range: 50 to 100 umol/l
Sodium: 140 range: 134 - 145mmol/l I didn't salt fast for this cos no one told me I should
Potassuim: 3.9 mmol/l range: 3.5 - 5.0 mmol/l
b12: 213 pmol/l range: 150 - 650 pmol/l
My ferritin is good because I have been taking extra strength iron for over a decade now due to an iron deficiency a doctor found back then.
I also cannot handle gluten in any form because I get the worse TMI symptoms ever. Unfortunately when I told her I thought I had a gluten intolerance and was starting a strict no gluten diet she smiled and said good but never tested me for celiac. This is until months later she decides to test me and I told her, I have been gluten free since sept (it was xmas then) so I most likely won't have antibodies. SHe smiles and says she knows but do the test and of course it came back as not celiac, right. Now she says to me there is no way at all you have celiac. I am like no remember we talked about the antibodies. She goes on to say well I have 2 celiac patience who were gluten free and they had antibodies. So?? I mean really and when I looked at my blood work from the lab (cos she tested me again for celiac) it says right on there "false negative results may occur with gluten free diets". Yet she refuses to even acknowledge it.
I am so peed right now and depressed. I have so many symptoms. I even have cushing symptoms but I think what has happened is I was cushings when I was younger and now its gone in the other direction. Reason I say this is I have had the buffalo hump since my late teens early 20's and the stretch mark issue happened around then too. I have really bad RLS that is getting worse this last year, tingling in extremities, hair loss (started going tray in med 20's), armpit hair loss and lower leg too, heavy flow (where it goes 3 days or so stops for a day or so and comes back to finish up for a couple of more days and now sometimes the occasional period is lighter (which is totally not me as I have always had super heavy periods). I have so many more symptoms that I could take all day putting my symptoms down. I am also asthmatic, server allergies that even prescription allergy meds don't get rid of and chronic sun is issues that I have had my whole life.
I need to feel like I am not alone. I feel so crazy right now cos no one seems to want to help me, except to play with my thyroid med dose, ugh.
Forget about the TSH. Symptoms rule. I have a buffalo hump as well. After more tests than you can poke a stick at, i have realised it is mainly due to my decade long (at least) undiagnosed magnesium deficiency (milder deficiency for who knows how long lol, 6 years moderate deficiency, 2 years severe), but my decades of undiagnosed hypothyroidism would of contributed
Now while my insulin is in the high normal range you can't have these two conditions and not affect insulin levels and therefore this in turn will affect where the fat is going to be deposited. And for me that is my abdomen and the back of my neck. *sigh* :)
You have vitamin B12 deficiency. You would know this by now if you lived in Japan or Europe. Their range STARTS at around the 405pmol/L mark. Well they measure in pg/mL but that is the pmol/L equilavent. That is still too low. All other countries have the most appalling reference ranges. I live in Australia and my lab range is 162 - 812 pmol/L. O_o
I keep my B12 above 600pmol/L at all times. I had severe adrenal insufficiency with B12 deficiency. You need B12 to make adrenal hormones. I currently take 2000mcg of B12 sublingual spray daily for my juvenile pernicious anaemia. I have permanent nerve damage so get those B12 levels up!
A book that goes indepth on B12: "Could It Be B12? An Epidemic of Misdiagnoses" by Sally M. Pacholok, R.N., B.S.N., and Jeffrey J. Stuart, D.O.
I think you need to find a different doctor - you have a lot of pituitary testing that is low and that is sad and most endos sadly do not know how to treat pituitary as much as they say they do.
You may be able to get into a neuro-endo with the results - but they generally like to know that you have at least a pituitary lesion but if you can get a GP to refer you maybe you can get in. Your tests show you are hypopit or maybe even panhypopituitary - that is not a good thing.
It took me forever to get my Cushing's diagnosed (not everyone has a hump - or lots of the other symptoms - we all vary) so you need a doctor that knows the disease. On the brain tumor/pituitary tumor patient forum, there are sites in the health pages listed that may be helpful.
Thank you for the replies so far. You are all appreciated and I don't feel so alone now. It is so frustrating, right? UGH I know I have to change doctors but I am in canada and wait lists or finding a doc that will take new patients is pretty hard. I was hoping to find a good doctor or endo on vancouver island but after researching it on the net I cant find anyone with good reviews etc...
I have a b12 deficiency? She has been saying all along (last couple of years) I am fine with my b12. My father was diagnosed with pernicious anemia in his late 40's, early 50's so I have always been concerned that as I got older I would go that route too. Ugh, explaining this to her while trying to get her to up my thyroid meds back up where I want them is going to make her angry and unapproachable.
And Rumpled? My pituitary tests are low? I kinda felt they might be even if they are in range. I am so confused by all of it and she is not going to be a help. How do I explain this to her so she doesn't think A. I am accusing her of not being a smart doctor and B that I am explaining it correctly? Like which tests are low and how do I word it. Does that make sense? She already acts like she is patronizing me and patting me on the head. I hate that.
Oh and I never thought about it BUT I was drinking 2 or 3 cups of liquorice root tea for 3 weeks or so before the cortisol test because it helps with my wheezing and asthma and I was reading that its also good for adrenals. Would that have upped my cortisol for the second cortisol test I took?
Thank you, everyone. I really needed to talk to others and didn't know where to turn.
I am used to US ranges - so here anything in the single digits like that I would find to be rather low and my doc would say the same. It is weird that your lab ranges are only just to be under a number rather than between two numbers - like how low is too bad because that can not be good. Too high is bad - too low is bad too.
Licorice root could interfere with testing - and it is going to be hard to get another set I guess? Some docs are just that way - they just don't want to think, and as long as the test is *in range* won't look at the patient and see a thing - it is like blinders! She may be smart, but she may be tired, seeing too many patients, etc etc.
Even in the US, we have to wait for endos and not all of them are good!
I know its totally weird that they don't have the lower range on some of those tests. I did research it and it seems those low results on those tests could indicate pituitary issues? The follicle being low and the luteinizing being low with the prolactin on the high side. So I am very confused but really trying hard to sort it out. I am tired of feeling like this for so many years with everyone patronizing me and I know they think my symptoms are made up but they are wrong. I know myself well enough to know I wouldn't make it up. I mean all you would have to do is look at my think dry hair, buffalo hump, dark circles under my eyes and lack of damn focus to know something isnt right. Then taking into account my RLS, tingling in my some of my toes, fatigue, brain fog, forgetting my words, heavy periods, asthma, chronic sinus issues, allergies, the sun rash I get, photosensitivity for my eyes, thin skin curved nails etc.... she just doesn't want to hear it. I am currently trying to find a new doctor. Maybe naturopath physician? I wonder if I wouldn't have luck there. Its really hard to find a good doc in this area that is accepting patients. I live on vancouver island area in canada.
Also thank you red_star I knew something wasn't right with the b12 and for the last 2 years I bet she done that b12 test 4 times and never told me what it said. Always said it was just fine! Why? Why do they do that. SHe know the pernicious anemia runs in the family and yet she just chose not to tell me mine was low? UGH I just get madder and madder.
Do you all think I could raise it with just sublingual B12 strips or is there a better way?
Thanks everyone. You have been such a help to me. More than you could ever know.
Even though many go the naturopathic way, I am leery since they can put you on very expensive out of pocket supplements, and some of them can actually make you more sick than you were. I don't buy the adrenal fatigue argument - your body is made for a lifetime so unless diseased, a body part is not tired and steroids suppress adrenals and do not (cannot) support them... I do think eating healthy, good lifestyle etc do help though. I know I had a heck of a time finding a doc - but I finally did. They are out there.
My mom had the B12 issues as well - she had to get the shots.
The doctors are busy, they look at lab ranges and if you are within that range you are "normal". I've even been told no action required with severe vitamin D deficiency. O_o Needless to say i ask for a copy of every lab result. Sublingual B12 does raise B12 levels. If i recall, i had optimal B12 serum levels in 8 weeks.
Ok, so I finally took the saliva cortisol test through a ND. I got my results back and was given 2 adrenal support supplements to take during the day. Aside from that is there anything else I can do to help heal my adrenals. I would like the bone deep all day fatigue (I don't get highs and lows anymore), memory loss, dizzy spells and aches to go away. I am currently doing really poorly. I cant even concentrate on my work and feel like breaking things in anger. I m literally at my ropes end.
My results were:
Am 24 nmol/l range: 12 to 25
Noon 4.2 nmol/l range 5 to 11 low
Evening 2.9 nmol/l range 3 to 9 low
Night 0.9 range 1 to 5 low
cortisol burden 32 range 20 to 42
And my DHEA was high 0.98 range 0.16 to 0.76
So what do you all suggest I can do? I cant live like this much longer. I am crying some nights over this horrible feeling of despair. Are there any other things you all do to help your symptoms?
You all have been helpful and I am glad to be able to post here and get advice. Makes me feel so not alone.
Your tests came back pretty normal. High DHEA is this "An elevated level of DHEAS may indicate an adrenocortical tumor, adrenal cancer, or adrenal hyperplasia. An increased level of DHEAS is not diagnostic of a specific condition; it usually indicates the need for further testing to pinpoint the cause of the hormone imbalance." You have a nice high morning cortisol reading. One set of tests does not really do it though - you have to do several sets over time - and not all of them should be saliva (free cortisol can have issues - you may have cortisol binding globulin issues).
It may not be an adrenal issue. It may be something else. What does your PCP say? How are the rest of your hormones?
You poor thing. Sorry you have to go through this. it sounds like you have adrenal insufficiency which goes hand in hand with hypothyroidism. Find a good nutritionist with a chiropractor that does "biomeridian" or a naturpathic doctor. Also get your RT3 blood tested because you might have adequate t4 but your body isn't letting you absorb the active thyorid (t3).I had an adrenal insufficiency in May2012 & have slowly recovered with a naturpathic doctor & nutritionist-still extreme photosensitivity & vertigo Yes the licorice root causing increases stimulation of cortisol. Good luck & may god bless being sick is horrible.
I hope you have found a doctor to help you by now, but since we share most of the same symptoms and i to could write a book with just my symptoms taking up half of it you probably have not. I am going to keep this short for now, its late, but i wanted to tell you a couple of things. I became severly ill 6 years ago.After 4 years of HELL i finally figured it out that i did have an autoimmune disease and finally got dx with RA and Raynauds. I am still really sick but finally collected 100lbs of medical reccrds and found a new primary care dr, i think that she may help.
I finally talked someone into checking out my adrenal glands because i had Cushings symptoms and by a 2% chance the cortisone injections i had been getting for my severe OA and Moderate RA got into my blood stream and made me have secondary Cushings, BUT, it signaled my adrenal glands to shut down and not produce anymore cortisol which gave me secondary adrenal insuffiency. I still have to have more tests and i dont know what it will all end up meaning but i wanted to tell you this because you can have tests that differ at times for many reasons. "EVERY SYSTEM IN YOUR BODY CAN BE AFFECTED BY ADRENAL INSUFF,.
I have not gotten any relief from my B12 diff. either but i just found out that Pernicious Anemia is your intestines inability to absorb b12 not an iron insuf
It can be caused by Adrenal Disease. I am not a dr but i would test you for an autoimmune disease. Mine did not even show up on the lab tests
because i was "SERONEGATIVE RA". I also have Hypothyroidism and Vitamin D diff problems. See if you can go to a Rheumatologist, they maybe able to help. I to am at the end of my rope and i hope and pray that all these tests and getting brave enough to change doctors (again) gives me many new answers. Your neurological problems are very serious, i had 5 surgeries each ending with severe nerve damage. The neuro dr
screamed at me that they were NOT related only a coencidence just go have my mouth surgery and qiut whining, how i have to live with nerve damage in my mouth on top of everything else. They can be a "manifestaion of the RA" but no one will ever give you a straight answer.. I do have respect for the holistic approch to medicine but i think its really important to have a stong diagnosis from an MD before you switch. Well this didn't end up being very short (lol) and im not sure if i did a good job explaining things?? I do have a coulple of good web-sites for adrenal stuff. I would like to ask a question? I am back into what i call my "sleeping beauty" phase where i sleep for 16 to 24 hours. The only way i can move is to use caffieine but i build up an intolerance. Just in case i dont get well anytime soon does anyone have any ideas other than drugs like Adderal, etc.?? This is the first time i have ever posted a comment, if you have any cons. critics please let me know. Good luck to everyone.
You may want to doc shop for a neurologist... I know I ended up with nerve damage too and have sero-negative myasthenia gravis - and half say I have it, half do not so I can understand where you are coming from. I actually tend to think it may be a variant or something else but when you are out of the box, there is no time and if you don't fit the tests, they have no clue what to do with you.
The endocrine issues can mess with the D and the thyroid. I hope your endo is up to snuff in all the testing.
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