This is my first posting and I feel like I am going to burst into tears! within 3 months after
the birth of my daughter, I lost weight rapidly, had severe mood swings, etc... my doctor took blood, sent me to an Endo as my Thyroid levels were severly Hyper! So, the Endo calls me at work to tell me I have Graves. put me on Tapazol (sp?). Within 3 weeks my levels were taken - they went down so much that the doctor said I didn't have Graves,and it was just a post pregnancy Thyroiditis... Well, 3 years later, I have suffered from extreme fatigue (for the last year), always feel hot - can't ever cool down! sluggish, heavy in the mid-section etc... Dr.s wrote it off as a busy mom thing.... Well, until I got Optic neuritis in both eyes, in and out of the hospital for MRI's, spinal tap - to rule out MS...steroid treatments, you name it! I'm 32 years old and feel like I'm 90! All looked "-"
for MS, but my Thyroid antibodies have tripled! Now I'm being told lupus (even though ANA is '-') or Hashimoto's - anyone have optic neuritis and Hashimoto's?? I know it is common with Graves.... I thank anyone who can help with a reply! Best,
I understand that it's so difficult for you..
Anyway as for your questions....
Having thyroid antibodies means that either you have hashis or graves or you can have some other autoimmune disease...
In your case i really dont know what to say as you didnt post the blood test results and the levels of your antibodies...it would be wise if you do this so that many on the post can help you interpret the tests
Also you need to post your thyroid hormone levels from these tests.
As for the optic neuritis and hashis ...no hashis has nothin to do with optic neuritis and from all that I know neither does graves...
Graves produces other optic probs on later stages of the disease but not optic neuritis.
Optic neuritis as I know is conected to MS.
But you can have both MS and hashis or graves...
As for the lupus ...do you have the butterfly erythema in your face?? it's always there if you suffer from lupus...
I think your endo made terrible mistakes with your case
IMO you should post the blood tests on the board and change endo.
Best of luck to you.
That which does not kill us makes us stronger.
That which does not kill us makes us stronger.
Do you know why he is saying Lupus? IMO, it is being overly diagnosed. There are 11 criteria and you must meet at least 4 of them. Do you have actual fevers, that is a sign, but different than just 'feeling' hot.
I thought I had Lupus too, but it was hashimotos, have you had labs taken lately? It's possible that you are hypothyroid now.
Keep posting and let us know.
No meds, waiting for scan
Thank you for writing back!!!! Anyone else have anything to add - I'm all ears!!
Here are my labs from 2 weeks ago: T3 Total= 73, T-4 Total= 5.4, TSH= 1.14.
Still - very tired, hot all the time - itchy skin...I went to my old internist today (non-HMO)- who was shocked because, with the enlargement he felt of my thyroid - and amount of thyroid antibodies I have
(TPO AB= 429.0) not one endo suggested a thyroid uptake& scan, or Thyroid ultrasound. He booked both tests at the hospital this week, and gave me the name of a great endo with a speciality in Thyroid (non-HMO too... ahh' isn't this the irony!) so, I'll be broke - but maybe saved!? Anyway, he feels that a definite auto immune disease is going on with my Thyroid... but not sure what... A different doctor suggested Lupus because I had two areas in my body with auto-antibodies (optic nerve, thyroid) - Any thoughts?
Thanks and bless you!!
[This message has been edited by Devrha32 (edited 09-22-2003).]
I would do a google on autoimmune diseases as there is something like 110 different kinds. Take Lupus and MS disagnosis with a grain of salt. Both are popular diseases for drs to bestow upon women who have peculiar symptoms. I was sent last year in a frenzy to a neurologist because I was told I might have MS. He explained how I did not have MS as it is very, very obvious on an MRI. He showed me what it would look like on the films if it was the real thing. If you can wing it get a MRI of both hemispheres. I know its expensive (my co-pay was $270 for the $2,700 scan). Yeah I nearly fainted. Might want to consult a neurologist for MS as they normally treat the disease, not Endos. I would bet you have Hashis and possibly something else, but not necessarily lupus. Butterfly rash & fevers are almost always present with lupus. Keep us updated on what is going on okay!
Hi Devra...I don't live too far from you My first endo (HMO) was in West Hills and he was a jerk, would only RX Synthroid, I found a new DR (he is a GP and non HMO)...he RXed me Armour and is willing to work with me on how my symptoms are and not just numbers.
What hospital are you having tests done?
No meds, waiting for scan
My3guys - no, you're not far from me at all! My tests are being done tomorrow and Thursday at Encino Hospital. I'm feeling nervous... mos so than I thought I would... I am not on any medicine now - nor hav I been for the last few years - only the short 2 week dose of Tapazol (sp?) when the first jerk (endo) told me I had graves... then took it back. UGH! Thank you for writing me... makes me feel good! Also, I think it's awesome you have a Dr. that deals with your symptoms, not #'s!!
ANGELA- thank you my dear for the kind words and great advice!! I am going to GOOGLE it! Isn't it amazing how much we can find out these days... sometimes I feel more like my own doctor!
I know a little of what you are saying and I do empathize with you.
I suffered from pp Thyroiditis after the birth of my son 15 months ago. I was initially HYPERthyroid and they suspected Graves, then I went HYPOthyroid. As I was breastfeeding my baby I did not have the uptake scan.
I am now permanantly HYPOthyroid, my inital Antibodies (TPO) were 2,000, then 4,000 (normal below 60) I have not had them rechecked since as I am now pregnant again and it would not change my treatment. I take Levox. for the hypo, and selenium (lower dose since pregnant) for the antibodies.
I take baby aspirin at my drs instructions for the antibodies, mainly because it may be linked to lupus and ANA antibodies..
All I can advise is that you keep on plodding along, seeing drs and trying to find out a diagnosis. I am hashimoto's labelled now..and they think that the pp thyroiditis was a little flare of that to let me know it is there, but I DO feel better since I know what is up with me.
Hang in there, there are people out there who understand and who want to help if only from a support capacity.
[This message has been edited by kerryhinch (edited 09-23-2003).]
My Consultant advised me to take the baby aspirin as he felt that If I had one autoimmune disease process, I may be susceptible to another (such as lupus which can cause abnormal clotting). I have had miscarriage in the past and so we wanted to do all we could to help this pregnancy. In an ideal world they would have tested me for other stuff, but I was already pregnant.
He said that taking the aspirin at such a small dose would cause no harm in my situation, but may help as there are higher rates of miscarriage for those with hypothyroidism and he wanted to ensure that if it was becuse of sticky blood, it was covered.
I wouldn't however, advise anyone to take it off their own back as your drs need to ensure that you don't have conditions/unknown blood levels which may cotraindicate it.
I hope that this helps,
[This message has been edited by kerryhinch (edited 09-25-2003).]