Should I prepare myself for auto immune diagnosis?

[Lala_dizzy]

I just turned 24 and for the past four years I've been going through alot. At 20 years old, I started fainting and having shortness of breath I went to the hospital and was diagnosed with hypothyroidism given meds never got better and went to alot of Doctors and had alot of testing. Two years ago, they found high RA factor and ana was negative sed rate was low and and the rest of the test. I was put on and off of meds for my thyroid i now have been off for a year the dr says I no longer have a thyroid issue. I went to a new Dr a week ago, this Dr is an internist and my labs aren't looking so good
SED RATE-     27 mm/hr (High)
Normal: 00 mm/hr - 20 mm/hr

Last year it was only 4

C Reactive protein    < <0.3 mg/dL

Normal: < 00.5 mg/dL


ANA - WAS POSITIVE

TSH-     2.390 uIU/mL

Normal: 00.270 uIU/mL - 4.200 uIU/mL

I've seen two rheumatologist before the new labs and they couldn't find anything. They said it was false positive.  
My symptoms are extreme fatigue, memory loss, depression, hair falling out, knee/joint pain, weight gain and alot more. My ANA was negative last time I was tested,

[TheLightSeeker]

Hi Lala.
I will send a pertinent link to your inbox soon.

Have a good day!
Niko

[Lala_dizzy]

Nikko, thanks you've been more than helpful. If Doctors can't treat me what can I do? What steps? I called a functional medicine Dr and she just wants to work on diet. I can't shell out $400 for a piece of paper with a diet plan. Please help me with this if you can you seem very knowledgeable.

[TheLightSeeker]

Hey Lala, your symptoms could be from low thyroid function as secondary to
low adrenal function, which would be caused from unresolved biological stress.

This is consistent with low free T4 levels, as T4 in such case would be used for reverse T3, thus creating thyroid type 2 (thyroid resistance).

This is a mechanism which downregulates thyroid function( forces low thyroid function) for adrenal recovery.

The critical issue remains the same though.

Conventional doctors are not trained to deal with such situations.
Do not waste any more of your hard earned money pursuing this with them.

You're young and you have a long life ahead of you.
Making the right choices regarding your health, will assure you of a much better life in the future.

Best wishes.
Niko

[Lala_dizzy]

Nikko, it seems to me its no Dr that knows about hypothyroidism or how to treat it. I've spent so much money seeing several Drs. And nothing has helped. I have no hope in Drs. All my other test for anti DNA and autoimmune has come back negative. Heres my new labs for thyroid T3-124 ng/dL
(80.0 - 200.0)
T4(Free)
(0.90 ng/dL
0.93 - 1.70)

My t4 is borderline, so I guess that's why I'm still having symptoms.

[TheLightSeeker]

My opinion is that you should be treated clinically and if your doctor is
not willing, I'm afraid, it might be best to find a new doctor who will do this.

Treating the labs and not treating the patient is plain rubbish!

So, fine, you can't afford a functional medicine doctor or ND, however, if your thyroid regulation is not adequate, your recovery from ANY condition, will be seriously compromised.

One thing that most people do not realize is that the cells repair and heal
at specific levels of voltage, so when low thyroid conditions cause low cellular energy production, the optimum voltage for healing purposes
cannot get reached!

So, your target areas should be:
1.  Proper Thyroid regulation (read my earlier reply regarding this)
2. Reduce inflammation.
3. Correct deficiencies.
4. Boost immune system.

Hope this helps.
Niko

[Lala_dizzy]

So why would my Doctor say I'm extremely on the high side? I'm confused. I also have that lingering RA Factor that won't go away. I can't afford functional medicine Drs sorry.

[TheLightSeeker]

Not so fast Lala.
This is not extremely high and if you talk to experienced rheumies, they will tell you that titres below 1:320 do not concern them much and the ones that they worry about are 1: 640 and higher. You're borderline according to their consensus, not knowing which direction it will go.
ANA testing has become extremely sensitive!

A/I diagnosis takes a long time and ANAs are just one of many criteria used.

And , yes, any competent Functional Medicine or Naturopathic Doctor, should be able to piece it together and get to the bottom of what is causing
all this autoimmune reaction.
Conventional medicine has a poor record in autoimmune diseases, both in diagnosis and treatment, but this is just my own opinion.

Best wishes.
Niko

[Lala_dizzy]

Hi everyone just got my Ana results they're 1:320..which is extremely high does it point to A.I. disease?

[zappalover]

http://www.dysautonomiainternational.org/page.php?ID=30

You wrote that you "started fainting and having shortness of breath."

"Many POTS patients also experience fatigue, headaches, lightheadedness, heart palpitations, exercise intolerance, nausea, diminished concentration, tremulousness (shaking), syncope (fainting), coldness or pain in the extremeties, chest pain and shortness of breath."

[Lala_dizzy]

@zappalover no why do u ask?

[zappalover]

Do you know of POTS (Postural Orthostatic Tachycardia Syndrome)?

[Lala_dizzy]

Nikko- you say its best to see a functional medicine Dr. But can they do anything about autoimmune?. I've been dealing with so much with the thyroid and now this. I don't know how to manage both at once.

[TheLightSeeker]

Any doctor who considers dysregulated thyroid function, whether autoimmune or not,as "the least of your concerns, right now", is doing you a huge disservice!
Should you indeed be hypothyroid, your battle to overcome your health issues, will be a very challenging one, as your cells need ample energy for healing and recovery purposes, something in low supply when hypothyroid.

S/He's going the wrong direction and perhaps, before considering seeing a rheumie, you should consider a Functional Medicine or Naturopathic Doctor,
before opening a potential Pandora's Box .
My opinion only.
Niko

[Lala_dizzy]

I'm sorry you had to go through that its so tough sometimes I feel like I'm going insane. I feel alone and my Dr won't say much just that its serious and i need to see a rhumey.

[Red_Star]

I'm not that good at convincing doctors myself. I had to wait until my TSH was 6 before I could get a doctor to treat me but by then I had severe symptoms and it was treatment or hospital on oxygen!

[Red_Star]

47% with Hashimoto's thyroiditis have a positive ANA. My ANA was negative though as was my RA factor. Here is some info on RA factor from Patient UK website...

"Disease associations of rheumatoid factor (sensitivity in brackets)[1][6]

Rheumatoid arthritis (60-70%).
Sjögren's syndrome (85-95%).
Felty's syndrome (>95%).
Systemic sclerosis (~30%).
Infective endocarditis.
Systemic lupus erythematous (~25-35%).
Infectious mononucleosis.
Hepatitis.
Juvenile rheumatoid arthritis.
Tuberculosis.
Dermatomyositis.
Syphilis.
HIV.
Influenza.
Malignancy.
Sarcoidosis.
Leukaemia.
Healthy individuals 5% increasing to 20% over the age of 65 years."

[Lala_dizzy]

Redstar--- how can I convince my Dr to get my levels in the 1 ranges? Because I've been feeling sick for 4 years. But she says that thyroid is least of my concerns.

[Red_Star]

An easy home test check out the youtube video: Hypothyroidism Type 2: Myxedema Symptoms. Not to say everyone with hypothyroidism has this symptom but it is a unique symptom of hypothyroidism. I'm covered from head to toe and my nose and lips thickened. Medication for two years has seen my lips go back to normal, nose improved at least, and I can pinch the lower part of my arm and my very enlarged tongue is still enlarged but not as much.  It's stubborn stuff this mucin!

Here is some info from Life Extension - Thyroid Regulation....

"According to a study reported in Lancet, various TSH levels that fall within normal range are associated with adverse health outcomes.

TSH greater than 2.0: increased 20-year risk of hypothyroidism and increased risk of thyroid autoimmune disease

TSH between 2.0 and 4.0: hypercholesterolemia and cholesterol levels decline in response to T4 therapy

TSH greater than 4.0: greater risk of heart disease"

[Lala_dizzy]

Redstar---I haven't been tested for those recently but have about two years ago and didn't have it.  Do you think positive Ra and ana have anything to do with thyroid and is it possible that tsh around 2 will still show symptoms?

[Red_Star]

The most common cause of hypothyroidism in developed countries is an autoimmune disease called Hashimoto's thyroiditis. If you haven't had thyroid antibodies tested yet, then request thyroid peroxidase antibodies (TPOAb) and thyroglobulin antibodies (TgAb).

My normal TSH has been around 1.5mU/L for decades. When it rose to the mid 2's I knew my thyroid gland was affected not to mention existing symptoms (also have cellular thyroid resistance) worsened. Labs confirmed Hashimoto's thyroiditis.

[Lala_dizzy]

Hi Nikko, thanks for your response. My doctor told me thyroid is least of my concerns for now..my hemoglobin also was abnormal. I will ask the she test those labs on my next visit. I'm extremely worried and thinking the worse of course. I know positive ra factor, ana and high used rate is not looking good.

[TheLightSeeker]

Hi Lala_dizzy.

There's a good likelihood that your thyroid TSH testing is NOT indicative of
cellular thyroid function, where it counts.
If I were you, I would pay out of pocket -if not all covered by insurance- to get the proper thyroid testing : Free T3, Free T4  AND Reverse T3!

You symptoms are classic for hypothyroid and if your doctors dismissed this based only on normal TSH levels, this is very disheartening, to put it very gently!

You may also do Dr.Barnes Basal Temperature Test on your own.
Just follow the simple online instructions precisely.

When there's prolonged organ involvement, it might progress to more serious conditions, so the earlier you rule hypothyroidism in or out, the better!!!

I would recommend you forgo all other investigations, until you have this
done.

I hope this helps, however, my comments are not intended to replace medical advice.

Please let me know how it goes and feel free to post again or pm me if you have any questions.

Best wishes.
Niko