Poorly Treated Thyroid Problems for 30 yrs - have high antibodies - Please advis

[juliee20]

32 yrs ago I became hyper-thyroid - I was not diagnosed for approx 2 yrs.  When finally diagnosed I was immediently admitted to the hospital from the doctors office.  I had half of my thyroid removed approx 6 months later after a couple of hospital stays to control very rapid and uncontrolled heart rate, pulse, etc.  I lost 35 lbs in 3 months.  I was very ill and a mother to two toddlers at the time.  After the tyroidectomy I was told I was fine and would never need medication because the other half of my thyroid would take over.  I felt pretty good for 10 years or so then developed fatigue, thin hair, weight gain, terrible muscle aches, muscle spasms, no interest in life, puffy eyes and face. I also developed severe hidradentis suppurativa, type II diabetes, restless leg syndrome, carpal tunnel, trigger finger, Dequarvain surgery, etc.  During this time my TSH was 2.53 to 3.00 (range 0.35-5.50)so I was told for years and years that there was nothing wrong with my throid.  3 yrs ago I was miserable and asked my doctor if there were other tests that I could have that might indicate that my thyroid was not working correctly.  Over & over again I was told my thyroid was fine and that I was overweight and needed to see a phyciatrist.  After researching I demanded the antibody tests and free T3 and T4.  These are my results:
Total T4 7.4 range 4.5-10.9
Total T3 135 range 60-181
Free T3 2.9 range 2.3-4.2
Anti-Microsomal anti range 326
anti-thyroglobulin anti 150 range 0-40

Where do I go from here?  My doctor is not treating me for hashimoto at this time.

[Mark Lupo, M.D.]

You may have a borderline hypothyroidism with ? Hashimotos - the treatment would be thyroid hormone replacement to target a tsh of 0.5-2.0 in most cases. Hashi is a destructive thyroid inflammation that is auto-immune.  Positive antibodies are also seen in Graves -- with your history of hyper, this is a possibility.  In summary you have autoimmune thyroid disease with a borderline TSH and history of lobectomy - a trial of replacement is worthwhile.

[lildeb]

The "Total" lab tests are a combination of hormone that is already bound to the receptor AND the hormone that is free roaming and is available, waiting for use in the body. Estrogens interfer with the Total lab test, due to the fact that they fight for the same receptor. These Total tests are out dated. By your doc ordering this test and ignoring your symptoms, it is saying that your doc is not very well versed on the thyroid. It may do better for you to look for someone who is an endocrinologist that specializes and primarily deals with thyroid patients.

With this lab result it says that you are definatly on the hypOthyroid end of things. Based on your symptoms, this result is not a normal or good result for you. Most patients do better in the upper 1/3 of the "Free" lab test ranges. If you were able to get the "Free T4" lab test. Your results likely would be out of range hypOthyroid or possibly on the very low end.

Total T4 7.4 range 4.5-10.9


A good example of this is with your T3 and Free T3:
Total T3 135 range 60-181
Free T3 2.9 range 2.3-4.2

Notice that the Total T3 is more toward the upper range, and the Free T3 is more toward the lower end and coincides with your symptoms.


Also, with your antibody levels confirming this, you need replacement hormone.

I hope this helps.

lil deb

[ancientmariner]

Your doctor SHOULD be treating you for Hashi's. Even your labs show that you are very hypo now. And with antibodies, test results are suspect - I know a woman who has Hashi's with permanent damage from being untreated for 20 years, and her labs were NEVER out of range. From what I've read, the best treatment for Hashi's is total suppression of your own thyroid with oral thyroid hormone, and may I recommend a natural desiccated thyroid product such as Armour. Your own thyroid produces many hormones, all of which are contained in a natural product, but in a synthetic  replacement like Synthroid, all you get is a synthetic version of the storage hormone T4. There are also synthetic version of T3, but alone or even when combined with T4, you are still missing some other very important hormones.

[juliee20]

I have had three different doctors in 4 1/2 years and not one of them have taken my symptoms seriously. I believe this is because my TSH was within the normal range.  I have finally found a doctor that confirmed to me that I had alot of things going on (although she did state that my TSH was normal).  She is going over all of my previous blood work and then we will figure out where to go from there.  Unfortunantly she does not accept insurance.  What blood tests do you suggest I have done? I am also chronically anemic and my ferritin level is 10 (range) 10-291.  Also I have low sodium and high cholesterol 241 range 125-200 high triglycerides 265 range 10-190 and high LDL 142 range 60-130.  I am on lipitor for the cholesterol. After researching on the internet I have found out that with thyroid problems your lipids can be elevated.  I also have been deficient in Vitamin D in the past.  I have not had that tested in a coupld of years. Thanks for your help.  

[lildeb]

High cholestrol is a symptom of hypOthyroid.

The basic lab tests you need are:

Thyroid:
Free T3, Free T4,

Pituitary Gland:
TSH (thyroid stimulating hormone)

For the auto-antibodies I know of

TPO - Thyroid Perioxidase

I have Graves Disease and was Hyperthyroid, The lab test for Graves is

TSI -thyroid stimulating immunoglobulin,

Some people have both Graves and Hashimotos. I'm not sure of any of the other antibody testing for Hashimotos, I can't remember. Maybe Dr. Mark or someone else may know the answer off hand.

lil deb

[juliee20]

Thanks for your help.

[juliee20]

Is it possible I have damaged muscles, tendons, etc...from untreated hashi's.  Is that why every muscles and tendon in my body hurts?

[HashiMan]

The anti-microsomal you had done, that was elevated, is different name for "TPO" antibodies. The other one Lildeb was probably trying to think of, to test for Hashimoto's/Hypothyroidism, is the anti-thyroglobulin antibodies, which you also had done. Both your TPO & TG ABS were elevated, strong evidence for Hashimoto's, when combined with your elevated TSH readings and low-normal thyroid hormone readings.
Some patients have a combo of Grave's disease and Hashimoto's and the latter wins out eventually. Others seem to transition from Grave's to Hashimoto's, over time (same difference but usually takes longer). Kind of a strange combo, hard to understand and more rare than having just one or the other.
Best Wishes.

[Chocobabe]

Oh, how I IDENTIFY!! Years and years of having problems and ALWAYS being told it wasn't my thyroid because I had a "normal" TSH. Yet it was!! And being on T4 meds (like Synthroid) did NOT take away my hypo symptoms. If your situation was mine, I'd find a doc who listens to SYMPTOMS--the way thyroid problems were treated for DECADES before the ridiculous TSH came into existence....and a doctor who will put you on Armour. I found a great website that helps patients: www.stopthethyroidmadness.

[tabtools]

So feel for you -- as you already have figured out the symptoms you describe -- high cholesterol, aches and pains, can all come from being hypo.  Treatment made a difference for me.

There are doctors who would treat someone with your numbers, antibody levels, and symptoms.  You may have to start asking around.  Perhaps your local pharmacist would be helpful. If there is a compounding pharmacist in your area, you might ask them.

It's true that some of those docs who treat with Armour would be on the list -- however, many thyroid patients need to combine Armour with some T-4 meds such as Levoxyl or Unithroid because the normal thyroid does  not produce the as large a percentage of T-3 as the pig's thyroid does -- human thyroids produce something like 5%, and thus, there is body of thyroid patients who do not feel well with Armour while others seem to need the higher percent of T-3. Your own numbers and symptoms would be your guide to your needs.

It's a strange world for the hypo -- the docs who would treat with Armour won't always consider a little addition of a T-4 med. Often, those docs who treat with the T-4 meds (Synthroid, Levoxyl, Unithroid) often won't consider Armour.

[tabtools]

If someone has been hyper, how long would their TSH remain suppressed, despite sliding into a hypothyroid?

I know that initially, the TSH of someone who has had their thyroid removed can be deceptively hyper looking for a period of time.

[juliee20]

I did feel somewhat hyper 2 years ago and lost 30 lbs for no reason.  I don't know if that means I go between hyper and hypo.  I've also had panic attacks which are horrible (feels like you're not in this world).  Some of the really horrific symptoms kind of come and go but I still am always tired with severe spasms in my feet, calves and back, puffy eyes and face, so on and so forth  I'm just trying to figure all of this out. It drives you nuts.  Thanks for your help.

[juliee20]

I had more blood work done.  Here are some new results

Platelet Count is high at 423 range 150-400
DHEA-Sulfate 79.0 range 35.0-430 - normal
TSH is now 1.98 range 0.35-5.50 - normal
Total Iron is 59 range 50-150 - normal
TIBC 392 range 270-440 - normal
% saturation 15 range 20-50 low
D25 Hydroxyvitamin D total d2 and D3
25-Hydroxy D2 <4.0
25-Hydroxy D3 18
25 Hydroxy D Total 18 - Abnormality Level is low
My doctor said the low Vitamin D will make me feel miserable.

Any help on interpreting would be appreciation.  To my knowledge I have never had most of these tests done before

[bleurae]

Hi, a little history. At 19 (38 now) I had a partial thyroidectomy for a tumor. I was diagnosed with papillary folicular adenocarcenoma. On synthroid .25mg (huge dose) per day since with pretty much no problems until this year. I went in with problems and was told they were in my head, had an ultrasound and they found a new nodule on my remaining lobe. The endo was a jerk though and said he wouldn't worry about it even with my history so after switching insurance I finally have a great one. My results this last week are as follows.
Free T3                 219
Total T3                104
Thyroglobulin Antibody  1130
Thyroglobulin           0.5
TSH                    <0.06
Free T4                 1.22
Thyroid Perox AutoAb    53

She has diagnosed Hashimoto's Disease and has referred me for completion surgery to remove the remaining lobe. My issue is how high my antibodies are. I am also concerned if they will go down after surgery as I know they are in my entire immune system so removal doesn't ensure that. I have one child, have had miscarriages and want to get pregnant again for another and worry this all has been why I have been unable to get pregnant. The new endo is more than willing to try me on Armour or a combination after surgery which is great but I am still just a bit thrown at how high the antibodies came back. Any insight would be sooooo appreciated.

Bleu

[NURSELPN]

The Endo that generally answers questions on this forum has been gone for 2 weeks so they haven't been accepting any new questions. I hope he will be back on Monday so they should start to accept questions sometime over the weekend. You definately need to post at the top of the forum though. I was just bored & was scanning through the old posts & noticed yours.

                            Good Luck & God Bless, Jean

[bleurae]

Thanks, I will re-post in then.

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