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10/21/2011 09:06 AM

Looking for some answers.....

RavenLunatic
RavenLunatic  
Posts: 2673
Senior Member

Hi,

I'm a Newbie here on this forum but not to MDJ. I just recently have been tested for endocrine issues but I don't get to see my Dr. until this coming Friday. I live in Austin but have to travel to Houston for medical treatment because APPARENTLY the Drs. here in Austin aren't able to do their jobs correctly & because of that DXed me as being crazy. Well, now that I have a Dr. who knows what she's doing, the blood work say other wise.

Anywho, here's my lab results. Wondering if I could get any input on them to see what I might be looking at & also any questions I should ask bring up at my next appt.

TSH - Boarder line Hyper (0.2?)

T3 - Hypo

ACTH - <5

Cortisol - 2 (a.m. testing)

Low Blood Pressure

Peripheral Neuropathy (not diabetic)

Reactivated HHV-6 (roseola)

Clinical DX of Mycoplasma Infection

Mold Exposure

CD57 - 38 (CDC & Private testing for Lyme Disease, both Neg.)

Calcification in sinuses (may need to be removed)

Cat Scan on Adrenal/Pituitary/Hypothalamus (no tumors to speak of)

I have every symptom under the sun. Including WEIGHT GAIN, not weight loss. I look at food & I gain weight. I've always felt I had to diet to maintain my weight & starve myself to lose weight. I am on thyroid meds. Armour & my TSH & T3 have gone back to normal but I do not feel any better & still have weight issues.

There are days I can not function. I feel like I'm going to die & I'm only 42. If anyone can comment or give me any FB I would be very grateful for it.

Also, my 8 year old son seems to have been born with this but is on the Hyper side, can eat all day w/o putting weight on, behavior issues (anger, sever ADHD), anxiety, hypopigmentation on buttocks, thighs, shins. He also has GI issues (non celiac).

My Mom's side of the family has Hemochromatosis. (sp?) I have tested neg. for that.

Once again, thank you for any input/advise.

Post edited by: RavenLunatic, at: 10/21/2011 09:09 AM

Post edited by: RavenLunatic, at: 10/21/2011 09:10 AM

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10/21/2011 04:51 PM
bob3bob3
bob3bob3Posts: 4213
Senior Member

Well to be fair I doubt if it is a Austin phenomenon. Medicine tends to be about science and statistical likelihood. People aren't likely to have AI, so they tend to try the most likely causes first. Many of the symptom are general malaise and since a lot of life is like that you can probably blame all the people that aren't really sick that visit doctors!

Thyroid problems are also far more common than adrenal. Diagnosis is a lot of guesswork on top of differential tests. Being "crazy" is also far more common. Interestingly though depression related illnesses can actually be endocrine based, from low BG etc! I think it a fair statement that most of us on the group have been DX'd with depression initially.

I can never seem to remember the entire thyroid loop when I need it! It is of course important to know that there are thyroid/adrenal inter-dependencies. ie a limit in one will throttle action in another. My first gut thought when I read your post was it seems to be similar to others I have seen here where thyroid is being treated and is "swamping" the impaired adrenal system. ie they are treating the wrong root cause.

No T4 testing? That's the feedback the HPA uses for TSH production. Its also seems a little inconsistent that taking T3 actually bought TSH back up. Oh I see, less demand for T4. Well in the scale of things TSH "leveling" is only really relevant if treating a thyroid based illness, not a pituitary one. (Which my gut feel says you have)

I assume ACTH and cortisol were from the same draw? That's important. BG tests also helps at that point because you can make some really good guesses about metabolism/energy in general. I think that given your 2ug/dl cortisol you are already in hypoadrenal territory. That's the big red flag that along with your low ACTH, low BP. low energy etc screams secondary AI. I'd suspect that is enough to get you onto full replacement and then maybe even reduce your Armour! I'd even judge a stim test isn't needed.

Any chance you have been on extensive corticosteroid treatment on the past? Asthma, arthritis, autoimmune etc? That can cause AI.

Weight gain also happens with hypo states. Rather its more the inability to lose weight. I wont launch into BG and insulin action! You'll have to get use to being a little more strict with diet when on adrenal replacement too. Its also quite common to not see a physical cause on a CT/MRI.

Your son? MSH is the pigmentation control hormone that is pretty close to ACTH and GI problems can come from high cortisol. I'd suggest a Cushings test for him to see if he is cortisol high, ACTH low. I have actually lost pigment since being treated for AI. That's a normal function of low ACTH when being treated with corticosteroids. Control hormones like TSH and ACTH become irrelevant in treating secondary (pituitary) based illnesses.

Mycoplasma etc not in my knowledge set.

Hope you find this useful.

Bob (Australia - use to live in Longview TX)


10/21/2011 11:54 PM
RavenLunatic
RavenLunatic  
Posts: 2673
Senior Member

Bob - Thank you for your response. I realize that it's not just Austin that has a problem with Drs. It just a shame I have to spend 7 hrs. (round trip) in a car becuse so many Drs. are so cluless. Now that I'm finally getting answers/being DXed. The same Drs. who said there was nothing wrong with me are now like, "Oh, I can treat that for you." Umm... Yeah, No Thanks!!!"

I had T4 testing, That came back normal. Like I said, taking the Armour caused my THS (T3) to come back to normal but all my symptoms stayed the same. I was told that was probably secondary hypothyroidism.

My Dr. believes I might have Hypopituitarism w/ a GH deficiency due to the weight gain issues. I have all the classic symptoms regarding that. I also have a calcification in my sinuses/nasal cavity that needs to be removed. Is this what it sounds like to you or anyone else? If so, how is this treated?

Will I feel any better with treatment or is this going to be a life long thing I'm going to have to deal with. There are days I feel like I'm dying & honestly, sometimes I wish I just would.

Is there a chance of Hypopituitary GH deficiency causing stage 4 adrenal failure? I just want to honestly know what I'm up against.

Thanks... =0}

Post edited by: RavenLunatic, at: 10/21/2011 11:55 PM


10/25/2011 03:27 PM
AKmama
AKmamaPosts: 210
Member

Hang in there Raven!! Your cortisol is really low - a 2! Eeek. No wonder you feel like crap. I have secondary adrenal insufficiency (ACTH deficiency, my GH levels were normal)- and YES, there is hope! Once they get you on the cortisol replacement you will worlds better and fast. I went from bedridden/ in pain (lower back, joints) to up and moving around within a few days. It is lifelong, but with the right medication, there are many people on this forum who are living happy, healthy, active lives. Smile

10/25/2011 04:58 PM
Claire78
 
Posts: 389
Member

I also gained weight Sad This was another reason why I was also given the "crazy" label in the UK but now I am doing very well with my new endo in Korea Smile

Once they start treatment, you WILL feel better. It is a slow process BUT well worth it! Don't give up hope!


10/26/2011 12:56 PM
bob3bob3
bob3bob3Posts: 4213
Senior Member

Sorry been out of it...

Treating hypopit? Basically replace the control or end use hormones in question. I have never heard of the sinus issue, but that's just me! I'd suspect you'll have to cortisol replace with HC/Pred etc and maybe get GH injections. GH use is a bit contentious so you might have to shop around. Have to keep an eye on your T4/T3 etc after starting this as they will probably rise too.

Oh be careful using the term "normal" when you have a pituitary based illness. It's always important to think differentially and view test results by deviation from the mean. A significant number of those in this group have been diagnosed AI despite being within cortisol reference range for example. Doctors that look at single blood tests and pronounce "there is nothing wrong" are not good. Even treated for AI I have some weird chemistry. Nothing is ever the same again!

Adrenal gland failure? Well I wouldn't expect so as such. It seems you more have a pituitary issue so the control stuff that tell the adrenals what to do is broken, not the adrenal glands themselves. They do tend to atrophy from lack of use of course, but you cant avoid that. (Treatment with control hormones like ACTH isnt done) You kind of have to find a happy medium where some adrenal function remains and some stops. You may need to regulate hydration manually (eg more salty foods) and add some adrenal based sex hormones (like DHEA and Testosterone), but that will all come as part of dose tuning.

I'll admit I wasn't impressed by maybe half the doctors I saw in East Texas. Took me a while to train my current crop over here as well. I solve the problem by taking responsibility for my own treatment and using doctors as information and prescription sources. Medicine is one of those careers where "doing a good & effective job" isn't actually possible. That's why its called practicing!

Bob


10/27/2011 07:51 PM
RavenLunatic
RavenLunatic  
Posts: 2673
Senior Member

Thanks everyone, for all your comments. I really appreciate it.

I just found out what I have, it's called MEN1, which I guess is extremely rare? Might explain why my son has Tubular Sclerosis.... HUH? I guess I have to get him in & tested. Seeing as the Neuro's had no explanation for why he had TS.

Again, thanks for all your responses. I think I need to find a MEN1 support group/forum. Best wishes to you all.


10/27/2011 09:25 PM
hypomama
hypomama  
Posts: 772
Member

I'm glad you have some answers - best of luck to you!

10/27/2011 09:33 PM
Claire78
 
Posts: 389
Member

All the best!
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