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

[Supers1976]

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?

[Supers1976]

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

[JenB12]

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!!!! :)

[JenB12]

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.....

[Supers1976]

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!

[Supers1976]

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!

[Supers1976]

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!