Had blood test for cortisol (now know should have been saliva test at intervals). Would only test me at 4:30 pm without fasting!? Results says 4.9 ug/dl. Does this mean I am low in cortisol - or O.K.? Or was this one blood test useless? TSH 5.020 if that info helps?! (I have an HMO for Healthcare - this test is all they would allow!) I'm female, 58, post-menapausal, SEVERE ME/CFS - Housebound/bedbound, permanent disability. Thanks so much - in advance - for any answers. Severe cognitive/memory probs! sorry! jln
I don't know about the cortisol (you're right, one draw isn't going to tell much-- what were the ranges with that result?) but with that TSH you are pretty definitely hypothyroid and need more testing and treatment. If your doc won't test your free T3 and free T4 with that over-range TSH I'd threaten malpractice (and while you're at it, get the antibodies tested for Hashimoto's: TPO and TG). You also need the saliva cortisol test, which you will likely have to pay for yourself with your limited health coverage.
It's very likely that if you get your adrenals and thyroid properly treated your CFS will resolve and you will get your life back. Hypothyroidism, adrenal fatigue and CFS carry many of the same symptoms and many CFS patients are actually suffering from long undiagnosed endocrine problems. There is a virus that's been identified that causes CFS called XMRV and your docs should be testing you for that if CFS is still suspected. But get your endocrine problems addressed ASAP-- it's more than likley they are the heart of the problem.
HI Javelina! Thank you so much for the prompt answer! Very eye-opening info! Ironic, since my Primary Care dr. is an Endochronolgist!? I do have an I.D. Dr, and have been tested and dx'd with Chronic Enteroviruses - with ME/CFS (am on unusual long term, high dose antivirals for suppression - also am being tested for XMRV at some point - by the way, now "they" are saying we need 4 tests! not just two).
But the info you've given me confirms some of my suspisions (abnormal weight gain in abdomen, loss of eyebrows, CFS symptoms etc). Have suffered for YEARS with symptoms but the "magic numbers" looked ok!? Wish docs could treat symptomatically....but they just will NOT listen!
Also, because of high incidence of thyroid cancer with ME/CFS Im scheduled for thyroid scan next week. Another irony...my HMO will willingly pay for expensive scans/mri's - but NOT the vital basic blood tests needed (such as freeT3,T4, Tpo, Tg etc. as you suggest!)...Maddening, isn't it! Am taking your advice ASAP! (and the saliva cortisol as well)
I'd be curious to see what your XMRV results are. I hope you're doing ok on the antivirals.
You can order your own thyroid labs online (if you don't mind paying out of pocket) and get the correct testing that way for a lot less money than just going to the lab. It would be well worthwhile I think to see what's going on since you're not going to feel better until you get your endocrine issues straightened out.
Hi again, Javelina! I'll make a point of leaving a post here for you when I do get tested and have my results. It may take awhile - the last I looked...up to 4 wks. wait - they're only testing tues & fri, kits must be overnight Fed-xd.
I'm a member of a really great forum for ME/CFS/FM/LYME and "we" have been following the breaking news and all follow-ups re: XMRV. In fact it's just about our main topic of discussion right now!
The specificity of the testing is now up to nearly 99%! (positive for ME/CFS = positive for XMRV) - it's just CAUSALITY (WHICH of the many viruses opened the door, so to speak!) that hasn't been established.
So many members over there have thyroid issues and now we've been told of this incredibly high ratio of thyroid cancers with CFS (which is why I'm being given a thyroid scan and also an abdominal scan).
Lots of folks are deciding to wait a bit to be tested, as there seems to be some confusion over how many types of tests are truly needed and right now they're expensive (the 2 main tests are $650.00)...and only one "safe" lab.
Also, the only treatments if positive are being used strictly in a clinical setting. (anti-retrovirals, etc.)
I don't know if you have CFS as well, but I have a wealth of info if you need any! Just ignorant about the thyroid stuff!
The only possible urgency for me to be xmrv tested is the fact that my protocol is rather experimental (don't know if ANTI-VIRAL will continue to be appropriate or if anti-retrovirals must be added - possibly a cocktail). I must wait for my next I.D. appt. this Mon. to get my answers.
Antivirals are not for everyone but I've stuck it out for 3.5 years - and I'm now able to read/write for the first time in 6 years! (had ME/CFS/Chronic Enterovirus most of my life - dx'd nearly 15 yrs ago). But my limit at this dose is drawing near. Thanks for asking!
The fact that I may actually have a condition (or more!) that can be treated will be such a help (re: any thyroid probs/perhaps cortisol also). The more abnormal conditions I can "correct" - the better overall and this will be a biggie! I want to deal with this right away - the trauma to my body from my meds is taking its toll.
You're quite right, nothing is going to help until the endocrine probs are sorted out. Do you recommend using a compounding pharmacy if I'm to be treated? (think my niece uses one - she has hashi's.) So much to learn.
I will investigate the home saliva tests, and pay. I think I may be able to persuade my doc about the other tests, in light of my lab results, once I confront him.
Every other woman in my family has had a lifetime of thyroid issues (one sister had a # of 17 before her doc finally took action!)...and if you're right I'll be joining them.
I ALMOST didn't pursue this as my number wasn't (for some reason) flagged by the lab. I just googled my lab results with a ? and I found you! I can tell that you're extremely knowledgeable - are you a Healthcare Professional AND a patient? You've made a difference today
Well, thanks again for replying! (we aren't always so lucky in getting such timely answers). I will check back here from time to time and if you like, hop on over to aboutme/cfs (phoenix Rising) and check out the forums.
Take care, jackie (sorry for the long post - bad habit, when I'm able to write...I WRITE!)
(LOVE your moving emoties! We don't get to have this kind at the other forum - they make a lot of us DIZZY (vertigo!)...they don't bother me and I feel like I'm getting away with something!)
No, I'm not a healthcare professional (though do have some in the family) I'm just a patient who has a very keen interest in this stuff as I went undiagnosed for many years, the last three of which were disabling for me. I tend to research things a lot, trying to get to the bottom of it all. Where I ended up, after seeing almost every specialist known to man, all of which just shook their heads at me, was with the endocrine system. It took a long time as one of the first specialists I saw over 15 years ago was an endocrinologist and he dismissed me very rudely ("What are you doing here wasting my time with these normal labs?") and I never thought to go back to re-explore that aspect. I've also got fibromyalgia and dysautonomia, which I'm convinced are an offshoot or reaction to my endocrine issues. No CFS though. I don't think my issues have a viral component and I never fit the symptom profile for CFS. I definitely feel for you CFS patients.
I agree you need to pursue this further, especially given the family history. My mother is hypo but it wasn't discovered until she was hospitalized at age 86. She suffered from long term depression, weight gain, and finally dementia and always refused to see doctors. I've sworn my path won't be the same as hers.
Yes, get your doc to do the additional testing but don't be surprised if he won't treat you if and when your labs come back "in range". As you will read here, it's not that you're in range, it's where in range you fall that's important. Low range FT3 and FT4 are absolute markers for hypothyroidism when symptoms are present. Most endos and docs ignore this though and we go untreated forever until we find one who will listen to us. The clinical guidelines for hypothyroid treatment are stuck in the dark ages, not just in the US but most of the world and it's small wonder so many people have other "mystery" illnesses like CFS, FMS, dysautonomia, etc when it's very possible that it's endocrine all along. So spend some time reading posts here, I learned a lot about this by doing that, and keep posting questions and lab results when you get them.
Hi Confusa! I just noticed your question - I haven't been checking the board (I've actually been in a CFS CRASH!...and not feeling too hot!?) CFS stands for "Chronic Fatigue Syndrome".
Many docs now use the acronym "ME/CFS" which stands for "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome".
I know!...quite a mouthfull I was dxd many years ago, and am being treated by an Infectious Disease Dr. (using long-term, high-dose Antivirals) as I have Chronic Enteroviruses.
I found this wonderful site when I recently got some "wonky" test results re: Thyroid and Cortisol. I "talked" to Javelina about this and she gave me excellent advice (which I took) and now things are happening pretty fast with my Doc. (additional testing/Thyroid Ultrasound etc.)
You know, so many people with ME/CFS also have many Thyroid disorders! A recent study concerning people with ME/CFS showed that something like 6,000 out of 100,000 had Thyroid Malignancies versus only 1 in 100,000 non-ME/CFS folks - pretty shocking statistics!
Thanks for your interest and take care!....jackie (jln)
Hi again, Javelina! Well, I took your advice and "confronted" my Dr. and he actually listened, ordered a Thyroid Ultrasound and additional tests (the blood tests will be done next week)!
I had the U.S. on Wed. and they rushed the results back to my doc yesterday! I spoke to him briefly, he's starting me on Synthroid (based on the 5.020 TSH) and going very slowly which I appreciate (it just means I'll have to go in quite often for blood tests to monitor increases in dosage...but we CFS'ers are notoriously sensitive to meds so "slow" is ok....starting at 25mcg. 1xdaily)
Does this sound right to you?
Now, the U.S. findings are: "Right Lobe is diffusely heterogeneous without a discrete nodule noted".
"Left Lobe is diffusely heterogeneous with multiple hypoechoic lesions.
The largest is in the upper pole at 4mm in size, and the others are somewhat smaller. It should be noted that the examination was technically somewhat difficult." (what the heck does that last sentence mean?!)
"Impression: Heterogeneous thyroid with small hypoechoic nodules noted on the left."
My doctor said that he will monitor these nodules (something about too small to aspirate, I think?)...but he didn't yet say how often.
Of course, I googled the terminology of the report to try and get more info....but I'm still not sure if this is serious - or common in people with Thyroid disorders.
I'm VERY used to serious stuff! - so that doesn't "freak" me out...but I do need to be pro-active with my own care (without over reacting!)
The only "contributing" factors I can think of might be 1. my Dad had several cancers including Cancer of the Parotid (Salivary) Gland, 2. Mom had B.C. (sister also) 3.I have several large swollen lymph glands in my neck (chronically enlarged - and drs. ASSUME they have been related to ME/CFS. 4. Difficulty swallowing and the sensation of a lump in the throat (can be pretty severe at times - I can choke on a drink of water...and I feel a constricting sensation around my neck which has been going on for a few years! (again...common with me/cfs!) 5. "lose" my voice often - as though I have Laryngitis, and have developed a husky, gravelly voice and a sore throat (yep!..also common)
So you can see my dilemma! Many "symptoms" can be attributed to the disease I already have.
In your opinion, is this wait and see approach reasonable? Have you had any experience with this? Do you think I should be more aggressive?
I want to thank you so much for your help! Who knows what might have happened if I had not followed your advice and been insistant!
I'll start the Synthroid tomorrow. I really don't know what to expect...is there anything I should be prepared for? I welcome any comments or advice!
As for the XMRV testing - I put that on the back burner (too many other things going on right now...and the testing is SO expensive and takes a long time to process results) but I'll let you know if and when!
I hope you're doing ok! (and a heartfelt thanks for your help!)
Javelina...I think the next round of blood tests are going to be done to look for Hashimoto's...and I'll post the results.
Also, I meant to ask you about your FMS/Disautonomia. Do you have POTS or O.I? and what do you do for treatment - if any? I take Atenolol for O.I. (just recently started this). I must remember to make sure that Atenolol and Synthroid are "ok" together. Have you discovered any "treatments" that help you, especially with the Fibro? At the ME/CFS/FMS board there are quite a few people with both ME/CFS and FM (the treatments get pretty confusing with this combo!) as well as just those with FM.
Yes, I think that thyroid disorders are very common with both CFS and FMS and that so many of us are basically suffering from the offshoots of thyroid and adrenal problems. I even wonder if those who do have the viral issue have them because of a poorly functioning endocrine system and the immune problems that stem from this. Who knows? But I'm so glad your docs took you seriously when you asked to be worked up and will be interested to see what your labs show.
Yes I do have POTS, that was the first thing that reared its ugly head high enough to land me in the hospital and it wiped me out for many months. I'm pretty sure these dysautonomias stem from adrenal problems as adrenals are one of the regulators of the sympathetic nervous system.
Even though I had significant thyroid pain and do have voice problems I had a completely normal U/S so I'm not too sure about how you might want to procede here (Reese is really very knowledgeable in this dept) but from what I've read, your nodules are very small still and do bear watching. It' very likely that your swallowing problems and voice issues are from your thyoid though. Many have found that if they treat the hypothyroidism properly (and I will emphasize PROPERLY, i.e. not use TSH as a guide for treatment but rather the free T tests and patient symptoms) that nodules can resolve as they are usually a product of a stressed or malfunctioning thyroid. Getting to a euthyroid state with proper hormone replacement can let the thyroid rest and often correct the nodules and goiters.
As for the Synthroid, it's not my medication of choice but most docs will disagree (and many patients do very well on it). I'm more of a fan of the natural desiccated thryoid hormones which contain all the hormones our own thyroids produce (T1, T2, T3, T4, and calcitonin). T4-only replacement can stress adrenals for many also. There are people with a genetic marker who cannot convert T4 to T3 well in the tissues and I would look into at least adding in some T3 to your meds if at all possible.
You will also need to test your adrenal function with a saliva cortisol test. As sick as you've been it's almost a given that you've stressed your adrenals (and with the OI, that's a giveaway too). Serum cortisol won't tell you much as it's just a singe draw and the 24 hr saliva testing is far more sensitive. If you do have adrenal fatigue you will need to start on a physiologic dose of hydrocortisone to support the adrenals while you add the thyroid hormones. Without adequate cortisol levels T3 won't enter the cells.
Another issue I'm currently wrestling with is reverse T3. I have high levels of it (probably due to very high cortisol levels from early-stage AF) and RT3 will clog the thyroid receptors and prevent exogenous thyroid hormones from working. The only way to clear out the excess RT3 is by going on T3-only for a period of weeks (along with well supported adrenals if you have AF). So make sure you get your RT3 level done as well to see if that's an issue.
With your cancer family hx it's very important to keep an eye on things. Something you might want to look into is a new use of an old medication called Naltrexone. It's called Low dose Naltrexone or LDN and it's been used with very good success for people with both autoimmune and immune deficiencies as well as certain cancers. There's not a lot of money out there for research since it's a generic drug but there are a lot of anecdotal stories as well as a few good research studies done that show a great deal of promise. Look it up and see what you think.