Seeking Advice!

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y2j

New member
I have never had a thyroid ultrasound - just blood tests. I know autoimmune thyroid disease often comes w/ both CD & RA. So many of my symptoms now seem like hypo and when I was younger seemed hyper. I have tried everything from alternative therapies to all-natural regimens...nothing is really working for me....maybe i will seek 2nd opinion from another endo. I hope it isn't refractory Celiac, most discussion boards I've seen, literature I've been given, books I've read, and even my specialists say that most ppl at least FEEL better within 2-6 weeks and so that's what bothers me. I could care less about having to be on the diet, I just don't FEEL well ya know?? Then other weird things I forgot to mentioned that I'd worried about is very easy bruising and they take a long time to go away, and also I found a lump under my eye like on the eye socket near sinus that my primary care doc said was nothing and one of my dermatologists said isnt a concern unless it gets bigger. It is all just a lot to deal with - the uncertainty, not knowing, the frustration. At this point I'm sort of beyond being worried/scared and what I'm feeling more is frustration of "not knowing." Plus a part of me gets frustrated that doctors always want to treat the "symptoms" and treat each illness INDIVIDUALLY instead of seeking out an underlying cause....ya know? But anyway, thanks for the info and the kind words!!!!!! :)
 
Hi sorry for your current problems, it sounds like you are going through a lot. i am not an expert, but i do want to emphasis that if your 'DOCTORS" are feeling hopeless, its time you move QUICKLY on to other doctors. I was diagnosed with Chronic Fatigue syndrome 21 years ago with the help of a good doctor. and if you know anything about CFS they love to say "i cant find something so there is nothing its all my head". that was the worst part of my CFS but dealing with a doctor WILLING TO TAKE ANY STEP to help you is the one you want to go to. that kills me when a PAID DOCTOR says nothing is wrong when obviously you are feeling different. Even if he asks you to speak to a phycologist as ONE STEP IN getting better is better then not taking any step at all and saying its hopeless grrrrrrrrrrrrrrrrrrrrrrrrrr!!! please find another doctor who cares. hope i made some sence.
 
They all "care" but, they all feel that there is not much more that can be done to help me other than the current meds that I am on plus the GF diet. They also don't really communicate w/ one another a lot -- which is to be expected -- but then it is extra work for me as a patient to have to photocopy ALL labs/test results/records and relay info from one to another. It bothers me b/c I feel as though they each treat their own little speciality area and treat each symptom WITHOUT looking at the "big picture" per say and trying to put all of the puzzle pieces together. I feel that there has to be an underlying cause and I am beyond the point of being scared/worried, at this point I am just VERY FRUSTRATED that there is seemingly not much more that can be done, plus just a constant waiting game and the uncertainty of "not knowing" yet feeling something more is wrong..ya know? Thank you so much for your kind words. I have struggled w/ Fibromyalgia in the past so I understand CFS. Luckily with yoga, meds, etc. the fibro sort of "went away"...but I still do struggle w/ the Celiac, Arthritis, and all of the other things listed below. It sucks, but I'm living my life, living each day one day at a time, and trying to stay strong, hopeful, and optimistic. Thanks again for your reply, and best wishes to you! :)

PS: My PCP basically told me I was being a hypochondriac this past summer. I took it into my own hands and saw an endocrinologist, neurologist, and gastroenterologist and through biopsies and bloodwork the Celiac, gastroparesis, reflux, reactive hypoglycemia has been confirmed and neuro suspects nerve damage. So, that really proved my primary care doctor wrong! I hope he feels bad for ever suggesting that it was 'all in my head.' He told me I had anxiety - doctors like HIM were what was causing me the anxiety! Thank goodness these other ones are at least trying SOMEWHAT to find answers and solutions!!!! I still unfortunately feel skeptical about and suspicious of the medical world, sadly. Anyway...best of luck to you and I hope that you are feeling OK! :)
 
Amms,

Thanks for the personal response, it is very much appreciated! I know it takes time and thought, and energy to respond, and I want you to know that I appreciate your thoughts on my comments.

I would like to add just a couple of things as some things may have changed since you've done your reading (and good for you for doing that reading, ;))!

1. Tests for lyme are unreliable...that is why Lyme Literate Medical Doctors diagnose and treat and based on symptoms, not on test results. Rheumatologists, dermatologists, infectious disease specialists, and others most likely lack the necessary experience and education to id and to treat lyme.

2. More than 5 different kinds of ticks can transmit lyme...and now they think that mosquitoes, flies, gnats, spiders, and other insects may be capable of transmitting the disease also (it can also be transmitted in the womb, and theoretically by blood transfusion).

3. Ticks carry other illnesses (coinfections), and like lyme, we just don't have reliable tests at this time...but we have treatments.

I would hope that you might check out the Lyme Boards...there are some very knowledgable posters with first hand experience over there.

Take care and God Bless! You sound like a very special person!

Bethsheba
 
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