So I have a very long story (which I wont go into right now) but starting last August 2011 I started having days where I'd feel general malaise, from there things went really downhill Feb. 12'. Prior to this I have always been healthy, good shape (6' 174lbs., very active), down to 154 lbs. now.
Since Feb. 12', I have prob seen about 30 specialists at boston area hospitals trng to diagnose me, tons of tests from every specialty, labs, biopsies, imaging, scopes, ATCH stim test, etc. etc.
Just recently I saw a urologist at mens health Boston and my lab results are posted below, I have yet to have a follow up.
Here are my symptoms (either currently or at some time during this ordeal):
-GI symptoms (nausea 24/7, gas, bloating, distention)
-mid/low back pain (dull)
-finger tips get prune/wrinkle sporadically
-orthostatic tachycardia [diagnosed with POTS by Dr. Freeman @ Beth Israel]
-lost 18 lbs. 2/25-3/15, unable to gain any back
-body temp has been running very low, 96.5-97.2 (was never like this)
-not sleeping well (getting up sometimes 3x night to urinate 4/6/8am, waking early unable to fall back asleep)
-constant varying levels of dizzyness/lightheadedness
-feel very cold alot, especially hands and feet
-whole body feels very sick
-sporadic dull headaches (usually just above/behind eyes but varies)
-muscles in legs, arms upper back feel tight/achey from minute I wake (horrible feeling)
-usually have feeling of adrenline rush through body upon waking in the a.m.
-restricted breathing through nose (often have to sleep breathing only through mouth)
-sexual: trouble finishing, lowered libido, not getting nearly as erect as prior
Labs/Tests That Have Been Off:
-chest CT revealed nodule in left lung
-cyst on pole of kidney
-homocycteine has been elevated
-CK levels always very low
-folate low level of normal
-D has been low
-8% atypical lymphocytes
-mild postural orthostatic tachycardia (noted on several AFT's)
-sinus cyst shown in sinus CT
-various non-sepcific metabolic markers off on mito workup
-various lyme labs have shown bands
LABS FROM VISIT W/ Urologist (they dont have units or range w/ them yet):
I'm going to give you a quick response and then go over your tests again. Your TSH is high. Some Drs and labs say if you're under 5.0 you're fine. Many labs are now saying under 3.0. I would see an Endo specialist and ask for these tests. Get your TSH, thyroid stimulating hormone, checked again. Also ask for FT3, FT4 and antibodies to be checked. Demand to have these tests done because they will tell so much about your thyroid. If your thyroid is indeed low you can feel tired, have hair loss, feel cold, have heart palpitations, and other possible symptoms.
You can start right now adding folate and vitamin D. You really only need about 10 minutes of sunshine a day to get what you need but many people get low during the Winter months. So, get a really good multivitamin.
Hello, thanks for the response, I think you may have misread the above post though, I noted my FSH level, not TSH. I have however had the TSH, FT3 and FT4 checked multiple times and its always close to the ideal place within the range. Especially TSH, the most recetn reading was 1.4, other times its been 1.56, 1.2, 1.18, and 2.20 (once early on in all this, however it was checked the next day and it was 2.02). From what I understand you optimally want FT3 and FT4 in upper half of normal range?
2/21 .90 range .60-1.6
4/22 1.4 range .90-1.7
5/17 .96 range .60-1.6
5/17 3.3 range 2.5-3.9
I know the FT4 looks a little low on 2/21 and 5/17, however those were both late afternoon blood draws whereas the good looking number, 1.4, was a 9a blood draw...not sure if timing matters for FT4 like it des for other stuff.
I am so very sorry about that. Yes, I was thinking it was your TSH levels. I still recommend getting a good multivitamin to get your D and folate levels up. What did they say about the lyme showing bands? I'll check on what these levels should be and get back to you. I really am sorry about getting your TSH and FSH levels mixed up.
Hi no worries, I will def. get a b-complex (I think I saw one w/ 1000 b12; 400 folic; 60 b6) and I just started taking a omega 3 supp that has 400 mg of D, its by Minami? they were expensive but suppose to be one of the highest quality, although it did stilll upset my stomach even with food. Hoping that goes away after a few days of taking.
So regarding the lyme bands, I've had a good 7 western blots from Igenex, labcorp, quest, mayo, imugen, etc. They have shown various bands throughout but never enough to be "cdc positive". I dont happen to have the most recent ones in front of me, but its more of the same:
1. Imugen 2/28/12
IGM they dont perform
IGM they dont perform
IGG 30, 41, 39
3. Mayo 6/11/12
IGG 23, 41
4. LabCorp 6/25/12
CD-57 238 & 11.9% ref. range 2-17%
all coinfection negative
5. Igenex 8/7/12
IGM 41 IND
IGG 23 IND, 34 IND, 39 IND, 41++
IFA Test: 40 (equivocal)
Multiplex PCR: negative all around
6. Quest 8/9/12
all co-infections negative
The common theme seems to be band 23 popping up (at all the labs) which is specific only for lyme, band 41 which is the first to show in lyme but not specific for it, and then 30 and 39 showing up that once through Imugen (which is suppose to be the most strict lab of all for lyme testing) both of which are suppose to be lyme specific.
I was treated with a month of doxy 200mg/day by my pcp and ID doc @ Beth Israel, however the other "lyme docs" I've seen said this was no where near long enough or high enough dose and have me set to start anothr round higher. However, I am holding off on that until these other issues, like the potential low test, are explored.
I would hold off and wait for the other tests too. Antibiotics can be a little hard on your system and they can also cause a yeast build up.
I know about the B-Complex. Yes, it can make you sick to your stomach. Maybe you should try taking it every other day for awhile until you get used to it. The B vitamins do need to be taken every day because they don't stay in your system. You don't want a sick stomach every day though. Your body should adjust pretty soon and you start taking them everyday.
Hi, I thinkthis was looked at, one time or another through out all of this. Do you know if the weght loss from this would be continuous?
I lost all my weight when I first got sick, between feb. 15th-may 1st 2012, I lost about 18-20lbs. (went from around 174-154 lbs., no fat on me even at 174). Since that time I havent lost another lb. but nor have I gained one.
As far as relevent testing, I know I've had the 24 hr. urine metanaphrine, norepinephrine, etc. (sp?) test done twice, and Chromogranin A done, and histamine levels tested, I had a fat pad biopsy for amyloidosis which was negative..not sure what else that would be relevent.
Sorry, I do not know if the weight loss in this case would be continuous or not.
With so many consultations being done, I am sure you would have checked in detail all the upper GI organs like liver and pancreas and consulted a Gastro specialist. Have you traveled to faraway places before you fell sick? Some times parasite infection typically by worms can produce such symptoms and may evade normal diagnosis.
Since you are still waiting for further test results, let us hope that you would soon find a solution to your health problems.
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