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ANA positive 1:160, hair loss but no real answer!
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ANA positive 1:160, hair loss but no real answer!

Hi I am a 32 yr old mother of 2 and I needs some advice, I have a swollen lower neck on the right side, I also have an enlarged tonsil on the right side.  My salivary gland also looks a bit swollen there too. My hair is thinning dramatically with an itchy stinging sensation at the roots, and I wake up feeling anxious but I don't know why, although it could be because I am worried, but I some times get this feeling even when I'm feeling good. I had blood test done an it indicated everything was normal including my thyroid, the only thing that came back abnormal was my ANA which were positive 1:160. The DR did a further test (ENA) and this came back slightly abnormal too, indicating I may have some unspecified Auto Immune issue. If I where a tight collar on my shirt I feel as if it's pressing down on my throat. Around my right ear it also feels tight. I have been previously been diagnosised with Sinus issues(X-ray showed my right side was full a few years ago) an a sludgy gallbladder(Functioning at 37% when it was bad a few years ago) but it hasn't bothered me much in the last few years until now. It is starting to give me small stitch like pains under my ribcage again.  My menstrual cycle in the last 4-5 months has also gone from  a regular 27day cycle down to a 20, 21,23 day cycles however the bleeding is about the same, I also get ocassionally constipated too. I am slightly worried, and I have made an appointment at a different DR for next week as the one I have now does not seemed to be wanting to pursue this any further unless I develop more symptoms(which I think is silly). Can you please give me some sort of help so when I see the new DR next week I can give them something to look at first.  I have a cousing that a few years ago had thyroid cancer also. Can you also have a thyroid issue even if the initial blood results comeback normal?  Are there further blood tests that can be done for a thyroid problem instead of a regular blood test?
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autoimmune disorders are notoriously difficult to diagnose.

did you tell your doctor about your cousin's thyroid cancer? that might influence the doctor's actions. if your insurance allows it, you might consider finding a good rheumatologist and explaining everything in detail to them. that helped me get this autoimmune disorder thing narrowed down, even if i still don't know as much as i'd like about my condition.

you might also consider talking to your ob/gyn about your menstrual cycle.  i had similar changes in my cycle, and my ob/gyn did a full work-up on me, including checking thyroid and other hormone levels.

hope that helps...
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Thanks Echofuzz for replying,

I did explain this to my Dr about my menstrual cycle but he dismissed it, which was annoying because I do believe it's part of the problem, and he also noticed my neck thicker on one side but also dismissed it, that is why I'm going for a second opinion on Monday.  It is frustrating but I am hopeful that this nes DR will be wanting to pursue things further. Just for the sake of another opinon I dropped into a chinese Herbalist and she noticed my neck straight away, she also believed my menstrual changes are linked too...hmmmmm!  She believed that is why I'm having overall hairloss. Do you know how many type of thyroid blood tests there are that you can have? My DR did the regular blood test and he said the thyroid was normal, but I just feel it he needed to dig deeper.

Will post back when I see the other DR, also the herbalist wants me to came back once the NEW DR has given me her opinon, she believes she will be able to help. We will see!

Thanks again for replying, makes me feel not so alone. Cheers!
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Sorry I forgot to add, Yes I did tell him about my cousins thyroid too, but it was just another thing that he dismissed. Very frustrating indeed!
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745975_tn?1258964522
If you don't mind me asking.... what were your thyroid levels? To answer your question, YES people can have thyroid problems and the doctor will tell them their levels are normal. When they are, in fact, slightly off. Also, labs narrowed the range for THS from .05 - 5.0 to .03 - 3.0 so if you have a TSH of 4 something it can cause you to feel hypo thyroid. When i was diagnosed with Hashimoto's (Autoimmune Thyroiditis) my TSH was only 4.62 AND my T4 was in range (granted on the low side), and I was experiencing fatigue and my hair was falling out like crazy.  Many Doctors might have dismissed my thyroid based on my numbers and not my symptoms!

Your doctor should be testing you for thyroid antibodies.... TPOab TGab...  and he should probably be testing Free T3 in addition to Free T4 and TSH. If you have positive TPOab or TGab and your other levels look "normal" you might have subclinical Hashimoto's... or rather: Hashimoto's with subclinical hypothyroidism....

Anyways I hope this helps.....
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Avatar_f_tn
It does help, thanks so much for replying to me too!

I do not have a copy of my blood results but am about to ring the DR and ask him to fax them to me.

I truly believe it's my thyroid now, to many symptoms for it not to be.  I shall right these tests down and get my new DR to run them for me, I will be seeing her on Monday.  I feel as if my DR is basing it purely on the Numbers too and not my symptoms, but hoping that this new DR will be different and want to take it further.

Other symptoms I get are:

Cold hands and feet
Wake up anxious/nervous for know real reason
constipation(Sometimes)
forgetfulness, lack of concentration

thanks for your reply, it does help a great deal, especially having someone actually listen o my concerns. I will get the results of my blood test and post them soon.

THANKYOU!

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Sorry noticed an error I did there!

That's "no real reason". I do that alot too, put the wrong word in when I am typing! UGH!
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Avatar_f_tn
  I can understand your frustrations.  Years & years ago, I went to rheumy bc my ANA was positive at 1:40. Back then he said that was just slightly postive and he wasn't worried until it was 1:80.  6 years after that it went to 1:80 so my pcp sent me back.  This time he said that 1:80 was not really positive and not to worry.  (not to mention all the symptoms are dismissed)  Fast forward 5 years now my ANA is 1:160 mixed pattern speckled and homogenous.  And yes,  you guessed it!  1:160 is not diagnostic forget it and the symptoms!!  

  Pick up copies of all your test results and have a good timeline when you see the new doc.  Don't give up and press him/her for answers. If the doc says no, then ask what then?  

  Hang in there!  Hope you get answers!

Best of luck & prayers

Karen
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Have they done a CT scan of the neck area?
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Thanks for replying,

I got my blood test off my doc and realised he ignored the fact that my TSH level was low. It is .73 which I believe now is only a .23 higher than the minimum .5! So I am figuring it out and writing list off what I need to discuss with the new DR. I believe it is HYPERTHYROIDISM as I don't put weight on, which is kinda alright but all the other symptoms suck! Especially the mood swings and the hairloss!

I did have a ultrasound done 3 yrs ago on my thyroid and the said it was normal, however I reread the report and it says that my right(The side that's swollen now) was slightly bigger way back then too!  I think now I may have had bouts of this occuring on ad off in the last few years, but now it's becoming alot more prominent. Anyway I go in and see this new DR on Monday so I am going to push fot a CT scan an the T3 and T4 tests to be done. I think now with all the other symptoms I have that I once thought were not connected are all apart of hyperthyroidism.  I talk way too fast too! My husband is always saying no one can understand you, slow down, but I can't!

He's more understanding now I have shown him a few articles on the net, actually he said sorry for not being more understanding which is sweet, and he is certain hyper is my issue too.

Will et you all know what happens Monday. Thank you to everyone for replying,  I don't feel so alone anymore and it's kind of calming me down and making me see there may be a light at the end of this tunnel now! WOOHOO!
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Hy Totie,

Thanks so much for replying, the answer is no I haven't had a CT but had a ultrasound 3 yrs ago because the DR said my neck  looks larger, however the report said it was normal, but last night I reread this report and even though it says everything is normal my right side was larger than my left way back then too! My right side is the one they looks larger now, more so than in 2006.  I am very disappointed with my DR but very happy to be figuring this all out as well. I advice everyone to do their research, because DR's somethimes don't!  Also my TSH in my bloods a few weeks ago was only .73 so I am leaning towards HYPER not HYPO, but we will see what this new DR says.

I shall be asking this new DR for the T4 and T3 tests, a CT as well as the thyroid Antibody test as my ANA is 1:160 an already suggest an Auto immune disorder(something the old DR didn't really care about).  Thank so much for the reply. I will post my results next week when I get them back.

Cheers!
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Hi JenB12,

I got the results faxed through by the DR, and realised he has ignored the fact that my TSH is only .73, only .23 off being considered HYPER. Wha as *** of a DR! Espeically considering all the symptoms and my ANA results, which already suggest I have an Auto-immune disorder.  My ANA is 1:160.  ENA is Positive for Ro60.

I will let you know next week what this New DR thinks.

thanks for replying so much, everyone has been very helpful!
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745975_tn?1258964522
I'm going to agree with you that based on your blood work it's more hyper then hypo.... also you symptoms are very very consistent with autoimmune hyper thyroid: Graves Disease.

Nevertheless, the thyroid tests that your doctor should order would be the same: TPOab, TGab, TSH, Free T3, Free T4.

Your TSH alone cannot be a deciding factor, in fact it depends more on where your Free T3/T4 levels are alongside the low TSH. Did your doctor check your T4? Because that is pretty much standard when they check the TSH. If your T4 is on the high side it would definitely indicate hyperthyroidism at the time that blood test was taken. Also remember that labs changed the range for TSH and it's now .03-3.0 so you are still with in range, even though on the low side.

Also you should probably get that thyroid ultrasound redone to check for any nodules. Especially if you end up having elevated TGab, most Doctors recommend doing the ultrasound every 6mo to a year. I had mine done a little over six months ago and my findings were similar to your last ultrasound, one side was larger than the other.  And I find it impossible to wear turtle necks as well.

Lastly, autoimmune diseases are very tricky. Even with my hashimoto's i sometimes have blood work that comes back very hyper thyroid.... this is because while your own body is trying to kill off it's thyroid, the thyroid will occasionally release a burst of thyroid hormone though the body. I often have weeks of severe hypothyroidism followed by days of hyper where i will feel anxious, jittery, paranoid, and during theses swings i lose a lot of hair. Not saying you have this, since your symptoms sound so much more like Graves to me.... but keep it in mind because enlarged thyroids are very common with Hashi's.

Good luck and keep us updated.... Be sure to ask for the whole panel of thyroid tests including the antibodies, and hang in there and be persistent... you know if your body is off even if Doctors are telling you that everything is perfect!

PS when you ask your doctor for the T3 and T4 tests be sure to ask for FREE T3 and FREE T4, this will tell you how much thyroid hormone your body is using vs just what is in your blood.....
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745975_tn?1258964522
one last thing i wanted to mention.... i know all the info out there says that weight gain is a common symptom of being hypothyroid, and that hashimoto's is the number one cause of hypothyroidism, BUT that is not the case for everyone: I am 5'5" and 102 lbs!!!!!  Our bodies are very sensitive to thyroid hormones and even a slight imbalance can effect your quality of life, regardless if it's on the hypo side or the hyper side!!!! :)
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Thanks so much for all the information, I am going to take all these tests that you have given me and ask for them to be done.

I too feel as if somedays are more extreme than other - Somedays will be constantly jittery an emotional with lots of hairloss, like 100-200 hairs easily,  and then it settles and I feel nothing but utterly exhausted from the moment I wake!  

I am very grateful for you telling me all you know, I will post back tomorrow when I have seen the DR and tell you what tests she wants to do, I will also then post back with the results hopefully later in the week.  

I shall also take my previous scans and blood tests with me to the new DR, hopefully she will see things differently!

thanks again I am so thankful to people like yourself, I'd be lost at what to ask the DR otherwise.

cheers
Sally
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Avatar_n_tn
You may want to be aware of the autoimmune diseases around hair loss..
alopecia areata, alopecia totalis and alopecia universalis...not saying this is your issue...also if you have undergone a lot of stress or trauma the hair loss may be telogen effluvium where the hair follicles go into a "resting" phase.

ALSO on your other issues...I would begin with a food panel to see which foods are causing inflammation in your body...this will show what food is actually in your blood stream, which is NOT where it is suppose to be.  UNDERLYING inflammation issues are the cause of many serious illnesses ( search the internet on inflammation).  There are one of two outcomes here..you either have a real allergic type reaction to the food OR you have leaky gut ( search that on-line as well).

Next issue is Celiacs...a sensitivity to wheat and or gluten. Research this as well.

All disease in the body is a result of TOXIC overload...are you cleaning out everyday?  what kind of food do you eat? there is so much we're not being told...so many issues that aren't handled lead to other issues...pretty soon you're not feeling very well.

One step at a time.
~Amy~
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I would also check into your iron levels, iodine levels, REVERSE t3...adrenal fatigue...
just some thoughts.

Usually when the thyroid goes out of whack..there are OTHER issues that caused that to happen.  Issues like iodine deficiency..low iron...low B-12...hormonal issues ( and if you have mercury/amalgam fillings your hormones will be off because mercury is an endocrine disruptor)..and then there are the adrenals.

Good luck...
~Amy~
womentowomen.com is a site run by female doctors..great place for information BEFORE you go see yoru doctor. :-)  Education on your part is KEY to your greater well being.
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Hi, I was just reading over your post and the posts after and I don't see where you have mentioned the pattern of you ANA titer.  Has anyone told you or can you look at it on your bloodwork?  That is very important in dealing with autoimmune.  For instance mine is 1:1280 speckled which means I either have lupus or sjrogrens and combined with my symtoms (symptoms) it has been confirmed I have lupus.  Do you know what your pattern is?
Joni
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Hi there again,

Well I went to my new Dr and she asked alot of questions she also measured my heart rate an BP which were extremely high, my pulse was over 100 beats a min an my blood pressure was 150/90! UGH!  She is **** all the tests you suggested, T3, T4 and the antibody tests, I think she is thinking Hyperthryroid issues too! Thank God this Dr is doind a better check on me. She also sent me off for a ECG on my heart, that I have had yesterday, as well as another unltrasound that I have booked for this Friday.  

I will get all the results next week.  But I think it is all pointing towards Grave Disease or something along those lines.  

She did not know what may have caused my ANA titer to be up but it may be linked to whatever is happening with my thyroid...we will see!

thanks for pointing me in the right direction with the tests, I think she was surprised I knew what I was talking about.  It just goes to show, you need to educate yourself and be aware of your own body!

Cheers again, and I shall post when I have the results.

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Hi there!

Thanks for posting, My blood results on my ENA test says this -  "Speckled pattern Titre of 1:160" and I was positive for Anitbody SSA (Ro60). I have no symptoms of Lupus other than hairloss but the new Dr is thinking now it could be my thyroid that is overactive and I have hyperthyroidism.  The main symptom of Hyperthyroidism is a high heart rate and Blood pressure, which my is usually fine but is not at the moment. It is very high, over a 100 beats a minute and my Blood pressure was 150/90, I usual sits at about 120/60 or 70.  She also said my iron was low!  Can't understand why my last Dr couldn't see all this as they were the same lab results he was looking at!

There are connective tissue disorders for hyperthyroidism so my new DR has run some more antibody tests, T3 and T4 blood tests as well an ultrasound on my thyroid and a ECG on my heart.  I shall get all the results next week.

I eat pretty normal foods, nothing over processed - an my diet id pretty good.  I don't get any adominal (abdominal) pains, I also don't get rashes and my joints don't ache.  I do get anxious and moody, and feel as if I am running way too fast.

If they these new tests don't come back with any significant I shall get the Dr to run a test for Leaky gut though, just to be on the safe side.

Thanks for all your information, I truly appreciate it an I shall post my resluts when I get them.



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Hi Joni,

Thanks for the reply.  I checked my report as I had it faxed by my old Dr to me. It says that it was a "Speckled pattern Titre of 1:160" and I was positive for Anitbody SSA (Ro60).

However I have no lupus symptoms other than my hairloss which could be related to the thryoid issue I think I am having too.  My heart rate and Blood pressure is also up so the Dr is leaning towards Hyperthyroidism and suspects it to be most likely GRAVES DISEASE, an autoimmune disease of the thyroid.  

The new DR is runing some more Antibody tests and T3 and T4 tests, as well as another ultrasound on my thyroid an I also had an ECG on my heart done yesterday too.  I get all these results next week so I shall post then what the Dr says and what the results are.  

Thanks for your concern and help!
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Sorry about the *** I have no idea what that means as the word it is covering up is "doing", not a swear word...Weird!

It is meant to read " She is doing all the tests..."

thanks again for all you wonderful help!
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745975_tn?1258964522
That is EXCELLENT news! I'm very happy that your Dr. listened to everything you had to say. And it sounds like she knows what she is talking about. It's important with medical issues to keep an open mind and for Doctors to remember that sometimes you can have more then one condition working against the patient at the same time!

I think there are a few more blood tests which assist in the dx of Graves... I don't know exactly what they are, but i am sure your Doctor knows!

My ANA titer was 1:320 speckled pattern and my Internist seems to think that it is due to my autoimmune thyroid issues... i'm not 100% convinced because you usually see lower titers such as 1:40, 1:80, or none at all, with autoimmune thyroid issues, but i'm **** further testing with a Rheumy so we'll see.

It could take a while before you have a good dx and a complete picture of what is going on with you..... but at least you are on your way!!!

Be sure to keep me updated!!! :)
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745975_tn?1258964522
HAHAHA that is too funny! I was trying to figure out what word could possibly go there that would be a swear word! hah!
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Thanks so much for everything Jen (is it Jen? - I am Sally), I am truly grateful for everything you hav done for me. You didn't have to, but you did! And helping others that are in need sometimes feels like a rare thing, you are very special and kind.

I am happy and relieved that my new DR listened too!  She got a bit of a surprise when she checked my pulse and blood pressure, she also noticed that my outer eyebrows are thinning, and from what I just read this is a symptom of Graves Disease too.

Well now it's just a waiting game for the results to come back but I will have the ultrasound done this Friday, so I will let you know what it says when I get it back that day.(I always look at my results, too curious to wait).

Had a bit of a laugh about the non-existant swear word too! I have know idea why "doing" is considered a swear word, but it's quite funny!  I thought "Oh no she's going to think I keep swearing at her all the time!" HA!

Anyway I will post soon, once again thanks for all you've done, your a blessing!

Sincerely
Sally

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745975_tn?1258964522
Sally,  It's no problem at all, I rely on people to give me advice and help me on these sites as well. This is a wonderful place to find answers as well as support!

Be sure to let us know how everything comes back.

PS. It's funny because it did the **** on my post above as well where i was trying to write "doing"

Jen
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471161_tn?1317194550
I am glad you are getting the attention you need from your doctors.  All I can add is be sure and keep records of all your doctors visits and bloodwork.  It will help you if you ever change doctors, get second opinions etc.
Good luck and God Bless.  You came to a good site.  I have been here for a couple of years and made some good friends who are very helpful

Joni
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Thanks Joni,

I am so amazed at all the help people like you are giving to me, I really felt a bit in the dark before.  I shall get my new Dr to fetch all my files form my old DR, because I shan't be going back to him that's for sure.  

I had my ultrasound done but it showed no nodules at all, just that my right side was larger than my left, left has a volume of 5cc and the right has a volume of 8cc.  It is only fractionally larger than my last Ultrasound 3 yrs , then my right measured 7.8cc.  IT said that my thyroid looks normal, but I wonder how normal it is to have one side larger than the other, and what's the cut-off size for being considered normal. From one sight I have read, my right is considered at the high end of normal, if not large!

However from what I have been reading there does not need to be any nodules or even an enlargement for that matter to have thyroid issues, so I am just hoping these blood results that I am waiting on to get back will have more answers for me.

I shall post them as soon as I get them, just hoping they have some answers for me.

Thanks for all your help, I truly appreciate it

Sincerely
Sally
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Hi Jen,

Well I had my ultrasound done and it showed that my right is still larger than my left, but is still considered "normal".  My right  has a volume of 8cc and the left is 5cc.  The right is only fractionally larger than it was 3yrs ago which it then measured 7.8cc.  

Was your ultrasound considered normal even though you have one side larger? And do you know what the cut off is for sizing before it is considered enlarged.  From what I  have just read somewhere on the net, my right is at the high end of normal.  And then somewhere else it said it was enlarged! So frustrating!

Anyway there were no nodules that could be detected so at least it's not looking like cancer or anything, which is a major relief!  I get my blood and ECG results this Friday so I will let you know what they say then.

Thanks for everything again!
Sal
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745975_tn?1258964522
Hey Sally,

Your thyroid is enlarged and larger on one side, but my understanding is that being enlarged in itself is not really a problem. I's only a problem if there are nodules, and even then only if a fine needle biopsy of the nodule reveals cancer.  It could all be in my head but i feel as though my thyroid being slightly enlarged puts a little pressure on my throat but again, as long as there is not a massive goiter pressing on the airway, or any worrisome nodules, it's fine. In fact many if not most people with autoimmune thyroid diseases have enlarged thyroids. I think in graves it can double....

Anyhow, i'm glad you got another ultrasound, it was time for a repeat just as a precaution... particularly since you have a relative who had thyroid cancer. I'm glad that everything looks good in that department :)

I will be curious to see how your blood work comes out this time around. I hope your Doctor ordered up all the necessary tests to rule in or out both Graves and Hashimoto's.

I'll check back here Friday night :)

Jen

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I have a question for you. I was recently dx with alopecia areata. I am 23 years old and only went to the dermatologist to get this checked out. i have no insurance and have not been blood tested yet for lupus, celiac or thyroid problems. I wanted to ask about your hairloss issue. Are you loosing hair in patches of baldness or is it just severly thinning? my dermatologist said that AA has no underlying causes but can go hand in hand with other auto immune disorders so i wonder if your hair loss has the same patchy pattern and if i necessarily need to be tested for those things. any information would be greatly appreciated!
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Supers1976 - I am so happy for you that you are finally getting answers.  I was just recently diagnosed with Hashimoto's at 52 yrs of age, but sadly have probably had it for MANY years.  Part of the problem with Hashimoto's is that it can wax/wane and the "usual" thyroid tests might not reveal the problem.  Right now, it sounds to me like you could either be in an active thyroiditis with Hashimoto's OR have Graves.  The antibody tests should give the answer.  I guess I finally became chronically hypothyroid in the last 2-3 years and have slowly been getting worse.  The mental (cognitive) symptoms and afternoon napping are what finally forced me to find a new doctor and push for testing.   Thankfully, I didn't have to push much.  It was the first thing she tested for.  Have been on Synthroid for a week and feel better already - and I'm only on the starting dose.  Thyroid disease is very treatable and you will be feeling better before long.
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881165_tn?1265988188
Just in case your thyroid levels all come back normal, I'm going to throw in another idea.  With your ANA and positive SSA, you could have Sjogren's.  (Actually, I guess you could have Sjogren's in addition to a thyroid problem.)  Sjogren's all by itself can cause hair loss, massive salivary gland swelling, and even inflammation of the thyroid without your thyroid levels being outside the limits.  I have had all these problems with Sjogren's.  If you want to pursue Sjogren's, you can get a lip biopsy to absolutely confirm whether you have it.  With the positive SSA, it might be a good idea even if your thyroid tests are abnormal.
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Hi there,

Well my thyroid test did not test positive for any of the antibodies, and so the lab did not run my T3 and T4 test!  "WHY" I have no idea. But things have gotten a tad worse for me over the weekend, I am extremely fatigued and aching in my feet and ankles, I checked my blood pressure after being fatigued for 24hrs(sleeping 14hrs straight) and it was LOW but the pulse rate was still high.  I have a rhuematologists appointment now (because I demanded one) and it isn't till the 10th of Sept. The anitbodies that I tested positve suggest Lupus or Sjogren's but the GP did not think I had them because I wasn't extrememly fatigued then, however now I am, so YIPPEE for him.  

To answer the question of whether my hair is falling out in patches, is no, it is an all over thinning.  I use to have a massive thick head of hair where you could pull it to the side and still not find the scalp, however this is not my case anymore, when I part it anywhere on my head I can see the scalp easy.

My lips are also very dry, and if I remember correctly, which is something I find hard to do at the moment, I had a swollen tear duct on my very first visit to the GP 2 months ago, which he said was nothing. HUH!  I cannot satnd leaving the house without my sun glasses and that's even on overcast grey days where there is no sun.

My guess is it is Sjogren's or Lupus, hopefully just Sjogren's, but knowing my luck it is both!  Anyway I have to go back to the GP on Friday as she made me do a 24hr urine test to see if my adrenal glands are the cause to my fast heart rate, I am thinking this will come back normal, but I will be telling her about the tired and sore weekend I had and know hopefully she will believe me.

Will fill you all in on Friday when I get the results to the urine test.

Thank you to everyone for your support, It means so much to me, especially since the Doctors seem to lack it.

Sincerely
Sally
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Hi there,

I just posted this with a few names attached however I don't know if it is going to work, so now I will post it to you all individually, sorry.

Hi there,

Well my thyroid test did not test positive for any of the antibodies, and so the lab did not run my T3 and T4 test!  "WHY" I have no idea. But things have gotten a tad worse for me over the weekend, I am extremely fatigued and aching in my feet and ankles, I checked my blood pressure after being fatigued for 24hrs(sleeping 14hrs straight) and it was LOW but the pulse rate was still high.  I have a rhuematologists appointment now (because I demanded one) and it isn't till the 10th of Sept. The anitbodies that I tested positve suggest Lupus or Sjogren's but the GP did not think I had them because I wasn't extrememly fatigued then, however now I am, so YIPPEE for him.  

To answer the question of whether my hair is falling out in patches, is no, it is an all over thinning.  I use to have a massive thick head of hair where you could pull it to the side and still not find the scalp, however this is not my case anymore, when I part it anywhere on my head I can see the scalp easy.

My lips are also very dry, and if I remember correctly, which is something I find hard to do at the moment, I had a swollen tear duct on my very first visit to the GP 2 months ago, which he said was nothing. HUH!  I cannot satnd leaving the house without my sun glasses and that's even on overcast grey days where there is no sun.

My guess is it is Sjogren's or Lupus, hopefully just Sjogren's, but knowing my luck it is both!  Anyway I have to go back to the GP on Friday as she made me do a 24hr urine test to see if my adrenal glands are the cause to my fast heart rate, I am thinking this will come back normal, but I will be telling her about the tired and sore weekend I had and know hopefully she will believe me.

Will fill you all in on Friday when I get the results to the urine test.

Thank you to everyone for your support, It means so much to me, especially since the Doctors seem to lack it.

Sincerely
Sally
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Hi Jen,

I just posted this with a few names attached however I don't know if it is going to work, so now I will post it to you all individually, sorry.

Well my thyroid test did not test positive for any of the antibodies, and so the lab did not run my T3 and T4 test!  "WHY" I have no idea. But things have gotten a tad worse for me over the weekend, I am extremely fatigued and aching in my feet and ankles, I checked my blood pressure after being fatigued for 24hrs(sleeping 14hrs straight) and it was LOW but the pulse rate was still high.  I have a rhuematologists appointment now (because I demanded one) and it isn't till the 10th of Sept. The anitbodies that I tested positve suggest Lupus or Sjogren's but the GP did not think I had them because I wasn't extrememly fatigued then, however now I am, so YIPPEE for him.  

To answer the question of whether my hair is falling out in patches, is no, it is an all over thinning.  I use to have a massive thick head of hair where you could pull it to the side and still not find the scalp, however this is not my case anymore, when I part it anywhere on my head I can see the scalp easy.

My lips are also very dry, and if I remember correctly, which is something I find hard to do at the moment, I had a swollen tear duct on my very first visit to the GP 2 months ago, which he said was nothing. HUH!  I cannot satnd leaving the house without my sun glasses and that's even on overcast grey days where there is no sun.

My guess is it is Sjogren's or Lupus, hopefully just Sjogren's, but knowing my luck it is both!  Anyway I have to go back to the GP on Friday as she made me do a 24hr urine test to see if my adrenal glands are the cause to my fast heart rate, I am thinking this will come back normal, but I will be telling her about the tired and sore weekend I had and know hopefully she will believe me.

Will fill you all in on Friday when I get the results to the urine test.

Thank you to everyone for your support, It means so much to me, especially since the Doctors seem to lack it.

Sincerely
Sally
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Hi there,

I am thinking it could be that or lupus too.  I had such a bad weekend, I could hardly get off the lounge and I slept for 14hrs on saturday night, only to wake tired and aching in my feet and ankles as well.  I have a rhuemy appointment next moth, it was the closest they could give me.

I also suffer from dry lips too, so I think I will be pursuing this test that you suggested no matter what.  My thyroid did not test for antibodies and so the labs kindly decided they would not do the T4 and T3 tests, I have no idea why!  Are they allowed to make that type of decision?!

Anyway I have another appointment this friday with my GP because she made me do another test, this time it was a 24hr urine test to see if my adrenal gland is playing up making my heart race fast.  I asked her could it not be related to the Auto immune issue and she said "...maybe"  I said well could all my prblems be related to it, and once again she said "...maybe" so that's when I demanded a Rheumatologist referral.

I will fill you in at the end of the week on what's going on.

also with sjogren's. do you have it?  And if you do, do you find that it wakes you at night like your breath gets caught on a very dry throat? I have very dry lips and I always seem to get little ulcers on the inside of my lips and cheeks but the breath catching on a dry throat only seems to happen at night or if I talk too much.

Thanks for your help
Sincerely
Sally
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Yes, I have Sjogren's.  The ulcers, dry lips, and light sensitivity are classic for Sjogren's.  I also have hair thinning all over.  It's not obvious because mine also used to be super thick.  It's common for fatigue to come and go.  The best place I've found to read up on Sjogren's is the Sjogren's Syndrome Foundation.  One other thing to do yourself is check your temp regularly.  People with any autoimmune disease often have a low grade temp all the time, or with frequent recurrence.  If you do, write it down regularly and take to the rheumy.

As for the low blood pressure and high heart rate, check out the Dysautonomia Forum and health pages here on MedHelp.  Also, you might want to read this info on peripheral neuropathy: http://www.medhelp.org/medical-information/show/74
Autoimmune diseases are a major cause of peripheral neuropathy.  In my case, I have a kind called small fiber neuropathy.  The nerves that regulate BP, pulse, sweating, etc. are nearly gone, so I pass out a lot!  However, with treatment for the Sjogren's, these symptoms may improve.  I definitely think that's related to your autoimmune problem!

Oops!  Forgot the dry throat.  Yes, sometimes it wakes me at night.  I sleep with a humidifier billowing right in my face all night, which helps.  I also have increasing trouble swallowing dry foods, large medication pills, or anything in gel-caps (which stick all the way down)
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Hi there,

No my hairloss is not in patches but an all over thinning, I think it's about half it's orginal thickness in about a four month time frame.  Yes you shoukd get your "ANA" tested and if it comes back with a positive (mine wss pos 1:160 speckled titre) then you need to have your ENA's tested. I would also ask for a full thyroid blood work, which should include all anitbodies, T3, T4 and Free T3 and Free T4.  Writ these down and take them with you, if his says no you don't need them checked then tell him a Doctor friend has advised you, in other words Lie if you have to, to get them to run the tests.  My Aunt is in the medical field and she helped advise me as did many people here on this site.  My thyroids were not tested properly so make sure they do it properly, I have to go back to the Doc's on Friday to get them to run the tests they left out last time - T3, T4, and Free T3, Free T4.

Hope this helps!

Also are you suffering any other symptoms? ie: Aches, especially hands and feet, sry mouth, fatigue, forgetfulness, irratable. If so write them down and don't forget to tell the doc.

Tell me how you go!

Sally
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