I'm seeing a wonderful LLMD now, Dr. J in S.C. that has discovered many things. However, I'm confused about some of them.
These are the test results and diagnoses that he's noted:
-very low Carnitine---RX for Carnitor 330mg 2x's daily -low Albumin----------Malnutrition (gained over 20 pounds that I can't lose no matter what!?) -low IGF-1--------?????? -very low DHEA-----start 25 to 50mg. daily -consistantly low sodium----Florinef .1 daily -Forinef also for dysautonomia -low ACTH--but norm. cortisol at 14????? -HBA dysfunction taking estrogen and progesterone -low ferritin-----malabsorbtion--IV replacement continued -left bundle branch block on EKG -NCS-----Polyneuropathy -MRI Brain--multipal lesions basal ganglia and brain stem; lesions in ganglia causing seizures -late/chronic Lyme and babesia WA-1 -very low blood pressure -rapid heart rate and irregular, palpatations -heat intolerance!!! SEVERE -very short of breath a lot
Saw Endocrinologist a few weeks ago due to so many hormone abnormals on 24hr. urine from months ago. This apt. was made long before I started seeing Dr. J.
She feels that he and she also suspects Adrenal Insuffientancy and/or Pitutary dysfunction. She has ordered many tests that I'm doing next week, but I'm not sure what they are as they are in comp.
Has anyone else had problems with your Adrenal or Pitutary glands?? Anyone developed Addison's? Pots?
I've looked up Addisons and it all fits except my cortisol level.
Just wondering if anybody else has these problems and what did you do. Any opinions or advice would be greatly appreciated!!
Thank you Posts: 351 | From Georgia | Registered: Feb 2008
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posted
scared...I have adrenal insufficiency and take cortisol for it....and pituitary gland deficiency and take growth hormone for it.
Both really help.
My 24 hr urine panel was pretty bad. Low on nearly everything. I think I was low or low normal on 18 out of 24 hormones.
Just those two adjustments could help you a lot.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
Yes, I had a similar situation. Lyme can attack the pituitary and the adrenals. When the adrenals don't function properly, you don't get sufficient digestive enzymes and get malnutrition.
Cortef and some other natural hormone supplements have been an excellent answer for me. Sounds like you are working with some knowledgeable people.
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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Thank you so much for your replies!!!! I really appreciate it a I know that was a really long post--sorry!
The Endo. called and said that my Calcuim is also very low and added more tests. I just had them this morn. so we'll see. My word!!!!!
TuTu---I replied on your post about being dizzy. I was wondering if your adrenal and Pitutary problems could be worsening due to your steroid Asthma meds.??!
Also, your heart???? Take care and thanks y'all! God Bless!!!!
Posts: 351 | From Georgia | Registered: Feb 2008
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quote:Originally posted by bejoy: [QB] Yes, I had a similar situation. Lyme can attack the pituitary and the adrenals. When the adrenals don't function properly, you don't get sufficient digestive enzymes and get malnutrition.
Interesting! I have trouble digesting foods. The visual evidence is there!
Thanks, scared....I'll go find it.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
Hi Scared,
I used to have the same LLMD.
Please continue to see the Endocrinologist for your adrenal and pituitary issues.
The Endo I see gave very specific tests and is treating me with HGH injections and is still waiting to see if the injections will work on the other hormonal imbalances.
My pituitary damage was from a head injury I sustained in 2001 along with other injuries from a MVA accident.
Hope this helps.
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6918 | From Columbus, GA | Registered: Jul 2004
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posted
I wish that I could find a LLMD or ND in my area that was as thorough as yours but no luck.
Posts: 103 | From New Jersey | Registered: Jun 2008
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posted
Bet a lot more of us have these adrenal/pituitary problems but have not got an enlightened endrocrinologist. Many of them seem to think that putting a patient on synthroid is the beginning and end of treatment for gland issues.
Where did you get WA-1? Have you traveled to the west coast and how was it diagnosed? It would be nice to disprove these hard and fast geographical babesia rules that the establishment clings to.
Posts: 8430 | From Not available | Registered: Oct 2000
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Firstly, thank you all for your replies; they mean so much to me!!!
Lou-----I absolutely agree with you! I think that problems with the endocrine systom maybe one reason why so many of us can't seem to get well!!
Much of this was discovered by accident! The Bundle branch block with I was in the hospital. Also when I requested all of my records from there, (all Dr.'s labs here end up in hosp. records) as I went through them I discovered a lot!!!!
I was always dehydrated ( low sodium, potassuim, etc..), found MRI with the lesions and NVC showing Polyneuropathy---ALL OF WHICH I WAS TOLD WAS NORMAL!!!!
I already had the 24hr urine that no Dr. here could figure out--hence the apt. with the Endo. that took over 4mths to get in.
When I saw Dr. J for the first time, I had brought all of these results with me. He was soooo angry about the other Dr.'s missing all of this. Then he ordered all the other labs showing the rest. He really is very good!
Now the Endo. is finding a lot more as the tests are coming back. I also brought her a copy of my Lyme consult and lab results which I feel helped her to take me more seriously.
So please, everybody always get and keep copies of everything!!!
So sorry as I can't remember your name now!! But, you replied about your issues and the meds. that your on. First, I commend you for still shopping as I just DON'T know how you do it!!! I am also house bound and feel just as you described, but I can't drive right now. I'm sorry as I feel your pain!!! Even with all the treatment, it didn't help you feel better as far as the hormones?????
Alv, I'm sorry to hear that you're hormones still aren't straightened out yet! Thank you so much for sharing your story and your advice. How did you end up in Alaska????? How did you feel about Dr. J in S.C., and was he able to help you?? I hope so. Also, I'm sorry to hear about your MVA---certainly the last thing you needed with everything else, huh!!!? I do plan to see my Endo. on a regular basis as I believe this maybe contributing to my degree of being disabled.
Lou, I'm sorry I forgot to answer your question. I was infected in Northern California. I lived in the Napa Valley until 6 years ago. But I was just diag. almost 3yrs ago! I know many think that Babesia WA-1 is only on the West Coast----NOT TRUE!!!
Although that's where I got it, there are more and more cases being diagnosed everywhere! Many in Fl., Ga.; really cases are popping up all over as more Dr.'s learn to test for it!
Many thanks to all of you as I was a little worried! Still am some as things seem to be pointing to Hypopitutarism, but we'll see.
I know this is another long post and I'm sorry, but I agree STRONGLY that many of us are give thyroid meds only (I was too),and not given enough attention to the entire endocrine system.
After doing some research and watching some videos on Lyme and Endo. Sys., I found that it can be common in many, especially the seriously ill! It is in Connie ??? Book and Videos.
Thanks again and may God bless you all!! Posts: 351 | From Georgia | Registered: Feb 2008
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klutzo
Frequent Contributor (1K+ posts)
Member # 5701
posted
Dear scared08, I am so glad you have such a thorough Endocrinologist....that is rare, IME. I hope you will continue to post what the treatment is for your results. With a low IGF-1, I would suspect hGH injections might be in order, if you can afford it.
Can you site any research proving that poor adrenal function will cause a person to make less digestive enzymes? I cannot convince any of my doctors of this and need some proof to show them.
Instead, the GI specialist insists that 95% of my pancreas has been destroyed and that is why I need massive amts. of prescription enzymes in order to eat anything now.
They have no explanation of why a life long teetotaler would have her pancreas destroyed (alcoholism is the usual cause), and both a CAT scan with contrast and an MRCP showed no evidence of an abnormal pancreas. They are basing the dx entirely on the fact that giving me enzymes lowered the huge amt. of undigested fats in my stool to almost normal levels, but lots of things could cause that. Before someone asks, my gallbladder is already out.
My serum am cortisol was 18.8, and my last ASI was normal except for low sIGA, so no conventional doc will take me seriously about adrenal insufficiency.
I've seen five alternative practitioners over the years. All of them said "you are only as healthy as your weakest organ system", and they all said my adrenals were by far my weakest system. But, none of them have the credentials to prescribe Cortef.
I can't afford an LLMD, and the closest one is two counties away. I am also allergic to all the ABX that kill Lyme, so seeing an LLMD would not be much help. I agree with whomever said that most Endos think prescribing thyroid supps. are all you need, and they don't look beyond that.
I will continue to follow your progress with interest and wish you much improvement soon!
Any ideas for where I can find research to prove the adrenal/malnutrition connection anyone?
Thanks,
klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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