I'm recently diagnosed with Hasi's by my endo, but my primary isn't aware of it just yet. I will see him Dec. 2nd. He is the one that refered me to the endo but he also refered me to a neurologist because I'm having problems with low blood pressure. He thinks I have posterior orthostatic tachycardia syndrome. The more I'm reading on Hasi's - it seems the low bp is a symptom of that instead. And it seems I've had it for years! I was misdiagnosed with a progressive form of scleroderma for 4 years based off these symptoms!
My endo wouldn't test my antibodies because my other levels are are "normal" but I've also read that some with normal levels see a decrease in symptoms with low does synthroid.
I'm going to ask about being medicated and if he will test my antibodies AND cholesterol (last checked in 2005). What are normal levels for antibodies? And which is better Synthroid or Armor?
I'm also curious to know if those with Hasi's have these symptoms before I see him.
- low bp (my 90 day avg. is 95/65)
- vertigo and feeling disjointed
- lower body temp (my avg is 97.3)
- no appetite/nausea
- mostly painful constipation but with bouts of loose stools
- extremely itchy skin
- pain and pressure around collarbones
- fatigue/lethargy - if I sit still for too long, I'll fall asleep in the chair
- heart "jumps", like it stops for a second then realizes it has to pump - very weird feeling
- eyes very sensitive to light - wear sunglasses almost every time outside, even when overcast
- feeling overheated - not quiet hot flashes (get them too)
- when not overheated - cold, even when house is 74 F
- hands get VERY hot (family won't let me touch them)
- no hair on calves, just on shins
- joint pain in hands, hips and knees
- skin/nerve pain in hands (xrays & blood work show no inflammation)
- constant, year round nasal allergies & congestion (don't respond to any meds)
- pressure/pain under/behind right bottom rib cage - was told "gallbladder attack" even though all blood work and CT scans showed nothing!
- brittle teeth (had to get dentures at age 35 because they kept breaking)
- paranoid of driving in snow (to the point of tears) and of being a passanger which has gotten worse over the years (anxiety maybe?)
- depression and feelings of being worthless (this I know is thyroid triggered)
Anyone's feedback is greatly appreciated. I have a 1/2 hour visit with my primary scheduled to discuss all my symptoms and want to go in as prepared as possible. The more I know, the more aggressive we can be in "fixing" this. I'm only 42 yrs. old and I'm raising my 3 yr old grandaughter. I have to start feeling better.
Thanks in advance!
Something else I just thought of...
Super sensitive to Benadryl (take at bedtime for itchy skin) - one pill knocks me out as well has sesitive to anesthesia. 3 seperate occasions - it took me longer than "usual" to wake up from it. So much longer the doctors were rather concerned about it.
Very difficult to respond without knowing what tests have been done and what the results were. Hopefully you have been tested for free T3 ( which is the most important thyroid test, followed by free T4 and then TSH. I'd bet that is not the case however, based on all our experiences. With all your symptoms, obviously something isn't right , so I suggest that you get somebody to do the checks I mentioned above as a starting point. You can also do some checking yourself by checking your body temperature numerous times over the span of several days and comparing the average to the optimal of 98.6. Averages lower than 98.6 indicate low metabolism/ low thyroid, even though most doctors will not acknowledge the usefulness of this test. If this interests you, here is a good reference.
All my levels are "normal" but they haven't checked the antibodies. TSH 1.69 uU/mL, T3 108 ng/dL, T4 7.0 ug/dL, Free T4 1.4 ng/dL, Free T4 Index 6.5, T4 Uptake 1.07
My body temp is always around 97.2, the other day it was 96.4...
My endo did tell me it was Hashimoto's based off my ultrasound and biopsy results. He just doesn't want to treat it with meds because the levels are "normal". I was going to discuss the option of treating it with my primary, at least trying something to see if my symptoms settle down some.
I think you are missing one more thyroid test, which just happens to be the most important one--free T3. For someone with Hashi's, and with your symptoms, and your low temperature, I would want to see free T3 in the upper part of the range. That's because it is the most active component of thyroid and the one which largely regulates metabolism.
Many of your symptoms do sound like POTS. My daughter has it and was diagnosed with a tilt table test. One thing you can do is take your blood pressure/pulse readings three separate times: Laying down, then sitting up (with legs hanging off bed) and finally standing. POTS pulse rate goes up 30 bpm from sitting to standing.
There is a doctor who has done lots of research about POTS and has some articles that are very helpful. His name is Dr. Blair Grubb and his articles may help shed some light.
It's so hard because so many symptoms are related to many different problems. Incidentally my daughter and I both have low body temperature (as does my mom) and I have often wondered if there is anything to that. I believe all three of us have Postural Orthostatic Tachycardia Syndrome.
Copy/pasting from another post of mine.
Well... saw the neurologist today, going in prepared for him to tell me "You don't have P.O.T.S, it's all because of your thyroid and osteoarthritis"
Lesson learned. He did tell me I don't have P.O.T.S., but he feels its some kind of Autonomic Nervous System Disorder. Now I have to get an EMG, Skin Biopsies of my leg (3), Neuro cardio autonomic reflex with and without tilt (tilt table test) and a sweat test. Not to mention blood and urine tests. ANA, Rhumatoid factor, HIV, Hep, CBC w/differential, thyroid antibodies, metoboloc panel, B-12, Lipid profile. sed rate, c-reactive and a few more that I don't know what they're for.
And all this on Dec 22nd.
He poked my skin with a pin in several places and I didn't feel some of them, he had me push and pull with hands arms feet and legs, and the gait test. When he had me stand still with my eyes closed, I started to fall to my right and lost my balance.
I thought for sure I was going to go see my primary on Tuesday and he was going to tell me "we know what's wrong, here's what were going to do to help you start feeling better"
So I'm back to square one... this has been going on for over 8 years.
I'm really curious to find out about any answers you get concerning the itching all over. Mine is an invisible type itch. Sometimes hives will pop up but mostly it is just my skin itching. It gets so bad that I scratch places raw. I also can't do Benedryl because of great sensitivity. Even taking it at bedtime affects me the next day. My 20 pound dog handles Benedryl better than I do.
Finding out about my B12 deficiency was so great. I do weekly injections myself (they aren't too bad) and the B12 really helps with the fogginess I felt.
I'm not sure exactly which of the things has helped the itching, but this is what I've been doing.
Levoxyl (75) started Dec 4
Shower with Whole Foods vitamin E soap (started mid Dec)
Apply Whole Foods grapefruit body lotion if dry skin (started mid Dec)
Multivitamin (with plenty of zinc to fix zinc deficiency)
Vitamin D3 (5400 IU) started in Nov
Iron supplements (for anemia), started Nov
Vitamin C (take with Iron to help absorption), started Dec
B12 injections- started Nov
The itching started to go away about 3 weeks after I started Levoxyl (and when I started with the vitamin E soap), but returned when I was out of town and ran out of my vitamin E soap. Then went away again when I resumed the soap. The soap is only 1.99 for a 4oz bar and seems like it's worth a shot!
But vitamin D deficiency is also supposed to cause some itching.
Well... it's not my thyroid. Antibodies are normal. No thyroid meds for me! (That's why I haven't been posting here) It's not B12 deficiency - mine is elevated. Still waiting the results of the Sweat Test, Tilt Table, EMG & Cryoglobulin lab. And until they biopsy my swollen lymph node, I'm still going to be concerned about lymphoma. I have to go back to the neuro after he gets all the results, so I will ask him about it then. Lymphoma can also be the cause of all my symptoms.
I use Dove for Sensitive Skin, have switched to Dreft & hypo allergenic dryer sheets for all my clothes & bedding - doesn't seem to make a difference. I have tried oatmeal baths in the past - they only make me itch more! I will look into the Vit E soap. Figure at that price, it can't hurt.
Thanks for sharing though. Really do appreciate it!
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