Autoimmune Disorders :: Hair Loss - Diagnosed With MTCD
May 29, 2013
I was diagnosed with MTCD 2 years ago. My case is lupus and they don't know what else. My case is mild. I really don't have much pain but I can feel something is there. Over this past year, 2013, I noticed my hairline is receding and now the whole top of my head is thinning. I always had a really beautiful thick head of hair and took great care of it. I keep it short but kind of spiky. Always looked good. But now as I stated my hair is thinning so much you can see my scalp. Just wanted to know if this is happening to anyone else. I am currently taking plaquenil, prednisone, cymbalta and imuran. Very low does. My doctor told me to cut down on the prednisone but after 4 days without it, I felt bad. I visited my dermatologist last year for a scalp biopsy but he said I didn't need it and I agreed. No thyroid problem yet but my numbers keep getting high. I'm thinking it's all of the above but don't know what to do about it. Any suggestions besides a wig?
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I am a 20 year old female. for the past 8 months i have had pains in my legs shooting down from my buttocks to my knees in both legs but is worse in my left leg but only while I'm sitting down and after i sit for 10 minutes i start to get pins and needles in my left foot and it is starting to happen more frequently and more painfully as time goes by it makes it hard to drive anywhere and painful to be sitting down. I have had a full spinal MRI and my spine is normal.
i feel like I'm always sick and when i get a cold/flu it never goes away at the moment i have a cough sore throat headaches which i have taken antibiotics for and it went away after 2 weeks of antibiotics but as soon as i stopped taking them it came back even worse. I am constantly yawning and tired.
I had a blood test and my WBC count was low 1.6 but everything else in the test came back normal negative for arthritis. The doctor has said to have another test but he said the low WBC count is most likely just low because of a virus?I have also been loosing hair. It is all making me stressed so the hair loss could be because of that but i don't know are all these symptoms connected? Could the pins and needles and pains be from lupus or another autoimmune disease? i am sick of going to doctors and spending money on MRIs which are useless.
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Hi everyone! I am totally new to this group and excited to get input from everyone! I'll try and give you a quick synopsis of the past year and a half for me when I gave birth to my first child....
Initially I felt fine, until about 4 months after I gave birth. I had initially lost all the baby weight and then I started gaining again, had major brain fog, dry skin, cold, crazy water retention and bloated face, unmotivated, etc. all the usual symptoms. In February I was diagnosed with Hashimotos by my regular doctor and here are my levothyroxine dosages and blood results since...
Feb 2015 Tsh 269. T4. <0.11. T3. <20. (No meds yet...initial blood work)
Apr 2015. Tsh 156. T4. 0.45. T3. 42. (25 mcg)
May 2015. Tsh 6.69. T4. 1.83. T3. 96. (75 mcg)
Sept 2015. Tsh 2.89. T4. 1.59. (100 mcg)
Oct 2015. Tsh 8.61. (75 mcg)
Nov 2015. Tsh 1.21. (100 mcg)
Feb 2016. Tsh 2.36. (100 mcg)
So my original Doctor began my levothyroxine regimen at 25 mcg for 6 weeks. I immediately felt much better even though my numbers were still going crazy. He upped my dosage twice then sent me to an endocrinologist. Both agreed that my numbers were so bad it could not be postpartum hypothyroidism and I had probably had this for a long time undiagnosed and the pregnancy made it officially just turn off. In October we lowered the dosage to double check this theory and I felt terrible and my numbers changed right away so my endo put my meds right back up.
Now, hair loss was actually never one of my initial symptoms and I am convinced that it began when i started my medication, but both doctors insist that it's my body getting used to the meds and my levels getting better and better. My endo thought perhaps it's was especially bad because I was also experiencing postpartum hair loss. But at this point it is now a full year since I have been diagnosed and on medication. Coupled with the hair loss I also started getting serious joint pain, but again my endo said I was adjusting and this was a common symptom of hypothyroidism.
So basically, I am wondering how after a year of medication I would still be experiencing symptoms with levels that are now perfectly fine? Unless it was related to the medication??....I feel very guilty bringing it up all the time to my doctor because I know I should be glad that the huge issues of brain fog, concentration and mood are generally good (I still say I am not exactly myself yet). I feel silly bringing up something cosmetic but it is so depressing to look in the mirror. I hate doing my hair, washing it, sometimes just running my fingers through my hair I get five more. Even though now I can say it's less, it's definitely still happening and I don't see any new growth. But, on the flip side, hair loss is associated with adjusting to armour and I am terrified to lose any more.
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I am hypothyroid/hashimotos. I have been experiencing significant hair loss for over a year. I'm young and female so having sparse hair is NOT ok. I've read one needs to have their ferritin at 70 or 80 to experience hair regrowth. When I first met with my naturopath and got diagnosed this year I was put on 25mcg of Levothyroxine and I told her my main concern was my hair loss. My ferritn was at 32. I was put on a daily elemental iron supplement.
A blood test a month later and I was already at 54! Two months after that i was at 68.3! I was getting close to my goal but at that test she didn't like how my iron and iron saturation went too high/out of range. So she told me to only take my iron pill ever OTHER day and lo and behold two months later my ferritin was down to 45.1. Super frustrating. I am trying to bring my iron UP! So how does this work? How can my iron and iron saturation be so high and my ferritin so low? Is it actually dangerous for me to take the pill daily if my iron saturation and iron are above the limit? I'm not going to be able to fix my hair loss and bring my ferritin up if I am only taking it every other day! HELP!
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Right now I'm in hypothyroidism mode. I was taking methimazole due to it being severely hyper but now am not on anything because of waiting 6 weeks until blood work to be done. My hair continues to fall out. Has anyone had issues with this. If so what supplements can be taken or what can I do to help slow the hair loss down? Will it grow back?
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I'm 25 and over the past 6 years I've been diagnosed with 4 pretty serious autoimmune conditions. When I was 19, I was diagnosed with Rheumatoid Arthritis which is often crippling, even now. I was told this was an autoimmune condition. Shortly after, I was diagnosed with Coeliac Disease, another autoimmune condition. The Arthritis and symptoms of the coeliac disease when I hadn't controlled it obviously made me feel unwell and I often felt lethargic and unhopeful due to a lot of pain and stuff going on in my body.
I managed to go on a clinical trial which allowed me to have a new and powerful arthritis drug which dramatically improved the condition and I managed to cut gluten out of my diet. I also lost a bit of weight - this helped.
However, after the trial, my symptoms of arthritis gradually came back but was usually kept under control with the exception of a few flare ups.
When I was 23, I was diagnosed with Type 1 diabetes after getting a very quick onset flurry of symptoms (another autoimmune condition) - I find this very difficult to manage.
I've recently moved cities and transferring all of my specialists and treatments left me with no arthritis medication, and a long wait until I see a diabetes specialist to adjust insulin levels. As you can probably imagine, I've been in an awful lot of pain and been feeling very down, tired and lethargic. I'm very upbeat although having so many conditions and I don't let it bring me down, even though I work a full-time job 8 til 5 everyday. I've been having problems with blood tests, platelet counts, that kind of thing.
I was aware that I had the antibodies for Hypothyroidism as I had the test for that about a year ago and I knew it was just a matter of time before I developed it. Upon my most recent blood tests, my TSH level was 47.7 - ten times the top end of the normal limit. I've literally just started levothyroxine but, as you can imagine, I feel completely overloaded with health issues and like my head is going to explode and quite down about it all.
I'm sorry to give you my life story but I was just wondering if any one else has any of the other conditions I have and how they manage with all of them?
Also - how should I have been feeling with a TSH of 47.7? Should I have been feeling VERY different because, like I said, I always feel fairly tired and down due to the combination of illnesses. Any advice at all would be appreciated - I feel massively alone with this.
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I began seeing bald patches on my head: one rather large one and 2 smaller ones. I also am losing a ton of hair each day. I have been diagnosed with a ferritin level of 8 and an iron level of 28. I am taking 325 mg of iron 3 times a day along with other vitamins. Approximately how long before I see an improvement in hair fallout and regrowth. I am also seeing a dermatologist for corticosteriod injections to help with regrowth in the completely bald spots. I am strongly considering shaving my whole head?
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I am a 25 year old female and I was diagnosed with Hashimoto's Disease probably around 2012 or so. I take 75MCG every morning and I do blood tests about once or twice a year to make sure my levels are stable. What I need help with are symptoms. My boyfriend has been very supportive, he was the reason I went to get the initial blood test because he said my symptoms reminded him of Graves Disease and it worried him. Well, I went to the doctor and got the tests done and he told me I had Hashimotos. Since then, my boyfriend has told me that he hasn't seen any improvement in my symptoms, in fact he thinks they've gotten worse. I have looked at a lot of different lists of symptoms that people with Hashimoto's Disease can experience and I experience a lot of them. I'll list the ones I experience the most and a little bit of a description to each so maybe someone can help me with what I need to do to feel better because honestly it makes me miserable.
-Hair Loss - Every time I brush or wash my hair there is always tons of hair in the brush or tub. It's everywhere all the time, I shed like the cats.
- Depression - I don't know if it is actually depression, but a lot of the time I feel like I'm just not good enough to be around anyone. I'll find myself crying at ridiculous moments with absolutely no reason for it. I also find myself thinking that people I know (and can acknowledge even when I'm feeling this way) love and care for me, and yet I still think they don't care about me and will abandon me at the drop of the hat, which breaks me down mentally.
- Stress - This is probably one of my worst symptoms. I am always stressed out about something, even ridiculous things that shouldn't be stressing me out. One of the biggest things I stress about is what I mentioned with the depression. I feel like my friends and loved ones are going to abandon me at any minute, which scares me and results in me lashing out at them in ways that if I can't control it soon enough may result in them actually leaving, which terrifies me and just puts me into a never ending loop of stress and depression.
- Anger - I can't seem to rationalize other people's behaviors. Completely normal behaviors that don't normally bother me result in me lashing out and screaming at people and saying things that I don't mean to say.
- Memory Loss - This is a really bad symptom. I forget things very quickly. If I don't actively keep it in my mind, I won't remember it. A perfect example, when I was still in college I was walking through town with some people and when we were going back to the dorms I made a comment about a truck I saw. I used to see it all the time and hadn't seen it in a while so I made the comment. The people I was with looked at me really confused and just flatly stated "You said the exact same thing when we walked by it on the way out" and I honestly don't remember seeing it at any point that day. In fact I didn't remember seeing it for around 5 months, and yet they claimed that I made the exact same comment I just had, earlier that day. It really messes with my head when people tell me that I did or said something and I can't remember doing it to save my life.
- Weight - Before I started taking synthroid I weighed 110 lbs, after I started taking it I gained like 30 lbs and I can't lose it. I'm stuck between 135 and 140 (I'm about 5'6" tall)
- Headaches - I get headaches on a daily basis. Sometimes they're really bad but generally they're just a slight discomfort in my frontal lobe area.
- Sleep - It takes me forever to fall asleep and even when I do I can't stay asleep and then I feel exhausted all day when I wake up, as if I never slept at all.
Another thing I've noticed and that is that sometimes I feel like I can't swallow properly, I always feel like I have to yawn to get a lung full of oxygen, and my nails curl downward along the curve of the tip of my fingers on like 3/5 fingers.
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I suffer from the problem of hair loss before marriage at the age of 19, where he was my hair loss, which is a dense tuft and continues to now (24 years old) so my hair has become very small and too short
Use Pantene Shampoo
To know what to make .....
I want advice and guidance and your directions even know the main reason
What are the required medical tests ....
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For the past year, I've been losing my eyebrows in patches. Patches will grow back, but then fall out weeks/moths later. I'm a 38-year-old female, healthy and fit. Recent blood work all normal. Thyroids normal. I'm not losing hair anywhere else, and my skin has no redness or dryness. It is just my eyebrows that keep falling out. The only thing I could think of was my birth control--I was on the Mirena IUD. But I removed it and ceased all birth control several months ago and the problem persists. All doctors I've visited have been stumped, thus my online question.
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I am male and so likely have had less severe autoimmune manifestations than females since they seem to have stronger immune responses. However, I have had some difficult times with autoimmunity. It started in 1972 with antiphospholipid antibody syndrome which caused deep vein thromboses in both legs. I started taking coumadin at this time but the dosage was not high enough to prevent some further clotting and a number of the clots travelled to my lungs causing pulmonary hypertension. Eventually, in 1994, this became severe enough to cause heart failure and the clots were removed via a pulmonary thrombo-endarterectomy. Subsequent to this, I developed lupus symptoms and lost both my adrenals and thyroid to it. The other lupus manifestation was regular pleurisy attacks. Also by this time, despite the coumadin, I was getting regular small blood clots on the skin on my feet and ankles, many of which subsequently turned into painful ulcers. In 2006, after reading an article on the internet by a doctor in charge of a hospital ward who was giving his patients 5000 units of vitamin D3 to prevent them getting sick, my wife and I started taking 5000 units of D3 ourselves hoping to avoid colds and flus. The vitamin D3 worked in stopping the colds but, in my case, it had another even better effect. The blood clots on my feet stopped and I have had none since.
In addition the pleurisy attacks almost ceased. With some additional experimentation, I found 10000 units of vitamin D daily (in split doses morning and evening, stopped the pleurisy attacks altogether. I remain free of the autoimmune effects since I started on the higher D3 dosage. I discussed the dosage with my hematologist and he felt up to 15000 units a day should present no problems in causing calcium over-retention (stones). I would recommend to anyone with auto-immune problems to try at least 5000 units a day of vitamin D3 to see if it reduces autoimmune problems. If you are concerned, you can discuss it with a doctor first but I have been taking 10000 units a day for several years now with no ill effects.
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I am a 29 year old female and I was diagnosed with Hashimoto's Thyroiditis at the start of the year. I have been having problems with my right eyelid in that over the course of the day it progressively becomes droopy and the only thing that relieves it is when I close it. When it becomes droopy it makes my eye feel like there's something in it and I end up rubbing it. It's only when I look in the mirror that it's droopy.
In January my endocrinologist ran an autoimmune profile (but not for every single antibody) and rheumatoid factor and these are the results of it:
Rheumatoid Factor - 9IU/mL (<20 negative)
HEP2 - Positive
Type - Speckled
Anti-DSDNA - 7IU/mL (<30 negative)
(Positive antinuclear antibodies but no significant disease association found)
ENA screen - Negative
Autoimmune profile
Antinuclear Abs - Positive
Anti-Smooth muscle Abs - Negative
Anti-Parietal Abs - Negative
Anti-Mitochondrial Abs - Negative
Anti-LKM Abs - Negative
Anti-Thyroid Peroxidase Abs (Anti-TPO) - 141 kIU/L (<34 negative)
I am posting here because I have a suspicion that I have Myasthenia Gravis. Not only have I got the problem with my eyelid but I tried to follow some physical tests for muscle weakness such as holding my arms out straight in front of me and deep knee bends.The results of these home tests I did:
Holding out arms stretched in front for 60 seconds - pain in both arms when it came up to the 60 seconds and left arm dropped slightly
10 deep knee bends - did all 10 knee bends but the last 3 made my legs feel weak and shaky
5 sit-ups (sitting from lying down) - could only manage 4 sit-ups
I have an appointment with my GP on Friday and since this has now appeared I'd like to mention my concerns to them.
My main concerns are :
Wouldn't my endocrinologist have tested me for Myasthenia Gravis if it's an autoimmune condition? If so what antibodies would she have tested and would any of the ones I had tested have shown I have Myasthenia Gravis?
Who do I need to request to see to get a confirmed diagnosis?
If it is indeed Myasthenia Gravis would it be because my current autoimmune condition made it worse? I have read that this is possible and I became very hypothyroid yesterday as I had very bad Reynaud's flares when out and about.
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So now I feel like a complete hypochondriac. Ladybud (who is fabulous, btw) has helped me tremendously. I am wondering if any of you have had your ANA patterns change. I am having muscle aches, dx with small fiber neuropathy and Raynaud’s, my RBCs and C-reactive protein have been low throughout the last 3 years. I now have been dx with a reactivation of the Epstein Barr virus and alopecia due to “granulomatous Dermatitis” (getting 2nd opinion later this month).
These are my titers and patterns over the years:
10/2011 ANA Titer: 1:320 Pattern: Homogeneous
11/2011 ANA Titer: 1:320 Pattern: Homogeneous
10/2013 ANA Titer: 1:320 Pattern: Homogeneous
5/2014 ANA Titer: 1:160 Pattern: Homogeneous
AND NOW:
6/2014 (AVISE SLE 2.0 TESTING (1st time with this test) ANA Titer: 1:80 Pattern: Diffuse fine speckled
Negative on all markers. I am HLA-B27 Positive, but negative for ankylosing spondylitis (AS).
Now my rheumatologist stated all my blood work appears to be normal and I have ZERO autoimmune positivity.
Huh? I feel like such a hypochondriac.
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I've just heard from my GPS surgery that my most recent blood test shows I have virtually no iron! As I have several autoimmune diseases including autoimmune hepatitis, rheumatoid arthritis, SLE (lupus), Raynauds, Sjogrens, acquired autoimmune hypothyroidism) , I'm rather afraid that this could be pernicious anaemia or hemolytic anaemia, as I've never had a low iron level until now. I was taken off methotrexate due to respiratory problems (side effect) and am on prednisone 25mg/day. Does anyone have any experience of sudden iron deficiency please?
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I was diagnosed with fibromyalgia years ago due to constant and sometimes debilitating muscle and joint pain. I am seeing a new PCP and she ordered some blood tests. The first was just a general screening but my c-reactive protein came back as elevated (also my platelets) so the doc ordered an ANA with reflex if positive. ANA came back positive (no titer information - it was just a positive/negative test I guess) and anti-SSA came back at 8.0 (negative range is 0.0 to 0.9). But RA factor, anti-centromere B antibodies, anti-dna (ds) qn, anti-jo-1, anti chromatin, anti scleroderma-70, rnp, anti-SSB, and smith antibodies are all normal.
Besides my muscle and joint pain I have had periods of alopecia (losing quarter to half-dollar sized patches of hair on my head), full-body rashes during especially hot times, asthma, and suspected endometriosis (currently controlled by depo-provera). I also used to never get sunburnt but my face especially gets really red now if I am in the sun for more than a little while. I have darker skin so its sometimes hard to see but lately my cheeks and nose seem constantly flushed.
All of these symptoms have been spaced out and gradual so I never thought anything of each individual symptom. The alcopecia was blamed on "stress" when I went to the doctor for it. The rashes I blamed on a simple "heat rash". My pain was diagnosed at first as carpal tunnel and then as fibromyalgia. But now with the ANA and anti-SSA tests I am thinking it all may be related. But I don't know and my doctor is out of town, and although I know she will refer me to a rheumatologist now as we have talked about that, who knows when I will actually be able to see the rheumatologist. So any thoughts would be greatly appreciated. I am thinking maybe SLE (lupus) but with only that one anti-SSA and none of the others I don't know. Also I do have flares 2-3 times a month where my pain gets much worse but it constantly hurts and aches the rest of the time regardless, which doesn't seem like typical lupus. Oh and I also had severe fatigue until my doc put me on Savella which helped with the fatigue but not the pain. So now I am on gabapentin also but it doesn't seem to help too much either.
I would do almost anything just to be pain-free for even just a day. I am hoping with the ANA results now the doctors will not only maybe be better able to treat me but also will take my pain seriously.
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I was just told by an opthamologist I saw ystrdy for a new patient visit, that my blood work that's been coming up positive for ANA since 2012 just means there's inflammation in my body. Not an autoimmune disorder.
last week a vessel broke in my right eye and it felt weird under the lid. It disappeared the next morning. Then I noticed one a few days later in opposite eye in the morning putting on my mascara, So my husband told me I MUST see an eye dr.
I brought copies of my labs and said that I'm referred to see a rheumy dr.because of positive ANA's.
I had to write down my whole history upon a first patient visit so he knows I have osteoarthritis throughout my body in different parts.
BUT, I didn't mention the strange rashes and how I just out of the blue mopping a floor tore and blew out 60% of my knee meniscus and needed surgery. The right knee feels like something is growing in it. and it clicks when I go down the stairs as if it's catching on something. so when I saw my family dr. for my knees, he only ck'd out the injured one and said he doesn't think it's rheumatoid arthritis but thinks it may be lupus, and referred me to see a rheumy dr. but I can't get in right away. I had to wait 3 months, but the day I went my car didn't start which wound up being a dead battery. I called the office and told them what happened and they couldn't put me in for ANOTHER 3 months. so I'm now waiting almost 6 months to see this so called excellent dr.
I get strange pulls and inflammation in muscles or tissues, like out of the clear blue sky I had pain that radiated down the right side of my buttock and it got to the point where it ached all the time. My rheumy dr. who no longer is in practice, sent me for MRI and it wound up being the psoas muscle. I had to see a radiologist in my local hospt. to get a special injection put thru the hip to get to the psoas. IT HURT LIKE you know what!!!! next day too.
never had it come back. How on earth did I pull my psoas?? the largest muscle in the body. it keeps you from falling off your chair.
My left hip hurts so bad at night that it wakes me up and an old mri says there's a sprain in it??? plus arthritis.
I also have had raynauds syndrome which started during my divorce in 1998. plus numbness in hands, arms, fingers at night and even the scalp.
keep losing hair and breaking off at the edge of my scalp and going bald on sides of head. I have osteoporosis diagnosed many years ago which I refuse to take medication for cause of side effects. I just take calcium.
the list goes on. I used to have a lot of pain everywhere and was diagnosed with fibromyalgia back in 2004. but I don't get those symptoms any more like I used to. so did I actually have it or not? wouldn't I still have the symptoms?
My c-reactive protein level was positive one time only. but the ANA started in 2012 till now. I get blood work done each year.
So Is it just inflammation because of my osteoarthritis? do all people with osteoarthritis have positive ANA tests?
The opthamologist made me feel like I shouldn't even bother going to the rheumy dr.
am I just making a big deal out of nothing?
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I was diagnosed Hashimotos this year.
Here are my adrenal stress test results:
Sample 1 - 3.4 (12-22)
Sample 2 - 6.1 (5.0-9.0)
Sample 3 - 4.8 (3.0-7.0)
Sample 4 - 3.2 (1.0-3.0)
DHEA:Cortisol Ratio - 2.62 (within range)
Latest thyroid function test results:
TSH - 2.50 (0.2-4.2)
Free T3 - 4.6 (3.9-6.7)
Free T4 - 15.7 (12-22)
Apparently my doctor says these are normal, yet when I am taking the Levothyroxine my Free T3 drops and my hypothyroid symptoms return. Am I missing something or am I the only one in the world with this problem? I presume the latter.
I am currently dairy and gluten free and my fatigue and constipation have cleared up since on the diet, however I retook my Levothyroxine and within 2 hours I was constipated. The only change I had made was retaking the Levothyroxine but I did increase my fluid intake, too. The reaction I had from the medication is making me doubt the benefits of it. Or could I be undermedicated at 125mcg? The nurse taking my blood last time said 125mcg is a lot for a little person like me to be taking!
So, in order to wipe the slate clean and start afresh with my care, I have since changed doctors and will be asking for the following at my first appointment:
Sex hormone profile - not just the testosterone, FSH, LH and prolactin my endocrinologist carried out but I would like to include the ones she has *missed* - the oestrogen, estradiol and progesterone. I am sure there are others in there...
Full mineral/vitamin profile - but excluding the folate, Vitamin D and Vitamin B12 which were done recently and including a full iron panel.
Repeat thyroid test - why oh why am I experiencing hypothyroid symptoms AFTER I take the Levothyroxine? When I reported this to my previous doctor they have told me they will end my script for Levothyroxine since they are under the impression I get no ill effects without the medication! Are they right?
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Wonder if anyone has been diagnosed with AIHL and finding treatment unsuccessful? I'm on immunosuppressants but now steroids because of extreme flare up and hearing rapidly declining, steroids now too.
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How did you discover that you had a autoimmune disease? What were your symptoms prior?
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I have psoriatic arthritis and sjogrens. I take methotrexate injections weekly and remicade infusions monthly. I still am having pain and swelling in between all of this. Does anyone else experience a lot of pain?
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Last year(2014) I started having some health issues. In March I was diagnosed with Mastoiditis. After that I began to have vision issues with pain and was diagnosed with Optic Neuritis in my left eye. I did 3 days of Solumedrol at home and followed with oral steroids. Since then I have had on and off hearing loss on left side and have lost my sense of taste 3 times for a few weeks. I recently had a mri and they found a 12mm choroidal fissure cyst on my left side. I also have tingling and numbness in my left foot and leg. I still have blurry and double vision in my left eye at times. I had previous ct scans and mris and there was no cyst present. Could this newly found cyst be causing my issues?
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