# Trial hormone therapy



## sleepylady (Mar 18, 2012)

How does anyone feel about treating the symptoms?

I am just curious. We on the board have determined that the most likely cause of my issues is thyroid disease. I am having my U/S guided FNA on 8/22. Providing this does not show cancer and I still show symptoms, if I can get a doctor to do it, what do you all think of treating the underlying symptoms with a low dose of thyroid hormone to see if it works?

I had some antibodies but don't show "positive". TSI and Tgab. The TPO was less than 6 out 34. TSI 84%. Tgab was 40 and then 20 (range for both was 0-40). My FT3 was 3.4 (2.0-4.4) and FT4 was .98 (.82-1.77). TSH 1.03. Antibodies tests and Free T3 was run in Oct. Free T4 and TSH were repeated in Jan. I have been tested for numerous other ailments and antibodies. I have two nodules 1.1 cm and 8mm on right lobe. 1.1 cm is hypoechoic w/irregular borders otherwise no other contraindications were noted.

I am not asking about other diseases as I have been tested for everything over the past 1 1/2 years. I just would like to know if anyone thinks that maybe a doctor should try to treat thyroid by symptoms and not by blood tests. For anyone thinking this way, what protocol would you try.

Thanks.


----------



## CA-Lynn (Apr 29, 2010)

Many doctors DO treat by symptom.....for example, my TSH has almost flatlined down to zero....so theroretically I shouldn't have the dose of Levoxy I am currently taking. But I feel so darned good right now that she doesn't dare rock the boat and lower the dose.


----------



## Lovlkn (Dec 20, 2009)

> My FT3 was 3.4 (2.0-4.4) and FT4 was .98 (.82-1.77)


How much lab history do you have?

You need to develop a tracking sheet with all dates and labs along with symptoms.



> FT4 was .98 (.82-1.77)


Your FT-4 is low enough to cause your symptoms. Your other lab's are perfect, except for the FT-4. I'm curious to see what your lab history looks like.


----------



## sleepylady (Mar 18, 2012)

Unfortunately, that has been my problem all along. I have heard that the FT3 is the last to change

The symptoms are so numerous it is ridiculous.

Hair shedding, cold hands and feet, intolerance to cold, weight changes without regard to diet(going up and down like a yoyo), joint and muscle pain, muscle weakness, fatigue, memory issues, brittle nails, dry skin, brain fog.

I sound and look like a poster child for a thyroid problem, but with only a low T4 and the nodules, I am being dismissed.

I have heard that FT3 is the last to change and also many people feel better with numbers in the upper 1/3. I am around 58%

I have had labs done 4 times. April, June, Oct 2011, and Jan 2012. 
TSH has remained pretty consistent. 1.4, 1.3, 1.3 and 1.03 (range all times of .45-4.5).

FT4 only run June, Oct, and Jan: 1.04, .96, .98 (range all times .82-.1.77)
FT3 only run Oct.: 3.4 (range 2.0-4.4)
Reverse T3(only run in Oct) : 281 ( I forgot range but upper end was 350 I think) I am at 12.1 if you calculate ratio

The Antibodies tests were run in June and Oct. of 2011

TSI was 84% in June and 63% in Oct. (0-139%)
Tgab was 40 in June and 20 in Oct (0-40)
TPO was <6 both times (0-34)

Vitamin D tested in June and Oct.

June: 21 (38-100) Then I started taking 5000 i.u. of D3
Oct 81 (range was really different at same lab, so I think a different test was run.

I have also been tested for Lyme, Erlichia, Ferritin, B12, Iron and Cholesterol (which also goes up and down.)

I seem to just keep adding new symptoms such as neck pain and pain around toes and balls of feet. I didn't feel any better adding a multi vitamin or the D3.

@CA Lynn-I need to get diagnosed with something first. I can't get that with these labs. The last doc I went to was a DO. I thought maybe he would be a little left of center and could help. Apparently I found the only mainstream DO! LOL!


----------



## Lovlkn (Dec 20, 2009)

The D should help some with your fatigue. Try and keep that in the upper 3/4 of range. I supplement 5KIU 6 days a week as the 7th seems to make me hyper. I tested in high range taking 5KIU daily.

Your falling FT-4 is key to what you are feeling. How much replacement are they talking about starting you on?

You need to completely ignore your TSH at this time. Insist on the FT-4 and FT-3 testing and only dose yourself by those.


----------



## sleepylady (Mar 18, 2012)

No Lovlkn that is the point.

No one thinks I have a thyroid problem. The numbers are all in range so tough crap. No one is starting me on anything. That is why I posed the question. I am feeling worse and worse as the time goes by.

I took the Vit D. for a long time. It did not change the way I felt. I know that the Vit D low can cause the symptoms, but even taking that didn't help.

I have seen a GP, Gyn, Endo and D.O. They just say "Your labs are normal, sorry".


----------



## CA-Lynn (Apr 29, 2010)

With labs like yours, I think most endo's would be reluctant to start you on meds and I don't think I'd blame them. I wouldn't be in favor of starting a patient on a drug just to see if it works.

Thyroid symptoms are symptoms of MANY different diseases. You mentioned pain in your feet and neck, so why not consult with a rheumatologist?


----------



## sleepylady (Mar 18, 2012)

To go back on my word, what other diseases?


----------



## I DClaire (Jul 31, 2011)

Everyone here knows how bad I've felt not only since my thyroid surgery but also before. I thought surgery was going to at least stabilize my ever-fluctuating test results and I don't think my test results ever truly mirrored the way I felt.

That being said, in the last few weeks I have noticed a rather dramatic difference in the way I feel and only five things have happened or changed since July 13 when I had my last labs:

1. My Vitamin D level was 21.8 (range 20.0-100.0) even though I took 2,000 IU faithfully every day. That was doubled.

2. My Vitamin B-12 level was 439 (range 211-911) so I started using prescription Nascobal nasal spray, 500 mcg, one spray, one nostril, once a week.

3. I tried bumping my Armour up from 120 mg to 135 mg (with doctor's blessing) but I think I feel better with the lower dose.

4. A major panic attack sent me to the ER, then to being hospitalized for quite a few tests, most specifically looking for a heart problem. Later, as an outpatient, I had more tests including a heart CAT scan.

5. I was given a small dose prescription for Xanax but only took it three times.

I honestly don't know if maybe my body finally started processing Armour better OR if the Vitamins D and B-12 have made a difference OR somehow just finally being convinced that something wasn't wrong with me has somehow let me relax and stop worrying so much about my health.

Then, because I have felt better, I've started going back to the gym and back to an exercise class I used to enjoy.

It's been kinda' interesting - when I felt so bad for so long and could not figure out why, the anxiety from all that no doubt exacerbated every symptom. When I began to slowly seem to accept that I was O.K., that things were better, and I felt even slightly better, those good feelings gave me more energy, desire and determination to push myself more...and right now I feel better than I've felt in a year or more.

The anxiety of knowing or believing something is wrong causes the symptoms to be worse - it's a very frustrating, anxiety provoking situation. I know there were times when I almost wished a doctor would find something because I was so totally mentally, physically and emotionally drained from trying to find answers. It really did a number on me but I have to believe it was a path I had to follow - I always figured eventually whatever was wrong would get so bad that I'd have a crisis and then I'd find the answer to the mystery. I believe that's what happened. Every doctor I've had for the past 5 years absolutely treated me by lab tests - they listened to my symptoms, and probably tried faithfully to help, but somehow (blessedly) I think I've gotten through the worst of it.

The last thing my cardiologist said to me when I was hospitalized after the anxiety attack, after being subjected to one test on the heels of another practically for 24 hours and everything was coming back normal, was "What do you want to do?" I'd been given Xanax and felt better within 10 minutes so my almost kidding reply was, "Go home with a bottle of Xanax." My cardiologist nodded in agreement!

Not feeling well, not being able to get answers, feeling like you're banging your head against a brick wall - it's tough. I think all any of us can do is keep advocating for ourselves and don't give up.


----------



## sleepylady (Mar 18, 2012)

I DCLAIRE-

My mom kind of says the same thing. And it is so hard to not think about feeling crappy when it affects your entire life. I really believe something is not right. Sometimes I have been told it is all in my head and I don't believe that either.

What makes me laugh is the total difference of opinion both on and off the boards. Before you I got two responses-1 asking what replacement I was offered and one saying to try and figure out what else it could be. This is very common.

Again, I personally believe in the horse rather than zebra feeling which is why I asked the question. I may have a symptom that could be diabetes or thyroid, or RA or thyroid or Lupus or thyroid. OK now I know that AI travel in packs, but really I could have a symptom or two from each disease EXCEPT thyroid??? Especially since every symptom fits that. That sounds so silly to me. I say, find a way to optimize my thyroid levels and make me feel better. Whatever is left over may be related to something else.

My personal opinion is that I either have secondary hypo or Hashimoto's. I have read more than once that Hashi's can present with nodules instead of high levels of antibodies.

I did have extremely heavy periods growing up and I am ridiculously short for a 43 year old woman! LOL!

I would like a doctor to tell me if it isn't thyroid related, to what it is related? To me, stress doesn't fly because if I am stressed out enough to feel this badly, then why aren't those hormones crazy?

I was told on one board that it may be pituitary related but since doctors don't usually go for that, I should try to go to a doctor and find out what ELSE it could be???? One DO told me I had too many symptoms to be hypo-my bloodwork should be off the charts. This just seems crazy to me.

Sometimes I think my blood work just hasn't caught up to my body yet.

Thanks for listening to the rant.


----------



## Lovlkn (Dec 20, 2009)

sleepylady,

Unfortunately I have to tell you to go find another doctor - I tried for 18 months WITH no TSH to get a DX before my GP finally heard me and referred me to an endo.

If you have a friend on replacement - maybe try their doctor.

Keep pointing out your low FT-4 and your symptoms - bring a printout from the web of symptoms of low thyroid - you sure have alot of them. I will caution you that most doctors do not like us going to the internet for diagnosis but you have nothing to lose.

It's going to take you finding that 1 doctor who will listen to you.

Order a lab sheet from HealthcheckUSA and find a new doctor. Being your labs to the appointment, I personally would go to a new doctor - not tell them whom I had seen Tell him how you feel and that your FT-4 is low and you are still having symptoms.

Having tried 6 doctors post op I can tell you that it is up to YOU to get the medications you need and what doctor would leave a woman feeling as bad as you do with even at least 1 of your thyroid labs being in low range. Proves my point that most doctors are clueless on thyroid replacement which is frightening as there are so many people on thyroid replacement.


----------



## Andros (Aug 26, 2009)

sleepylady said:


> Unfortunately, that has been my problem all along. I have heard that the FT3 is the last to change
> 
> The symptoms are so numerous it is ridiculous.
> 
> ...


You do in fact have autoimmune thyroid disease as evidenced by the copy and paste below.

TSI was 84% in June and 63% in Oct. (0-139%)
Tgab was 40 in June and 20 in Oct (0-40)
TPO was <6 both times (0-34)

TSI
Normally, there is no TSI in the blood. If TSI is found in the blood, this indicates that the thyroid stimulating immunoglobulin is the cause of the of a person's hyperthyroidism. 
http://www.medicineonline.com/topics/t/2/Thyroid-Stimulating-Immunoglobulin/TSI.html

autoantibodies
http://www.thyroidmanager.org/chapt...d-specific-autoantibodies-tpoab-tgab-and-trab

I strongly suggest that you read the above and I also believe you would be a candidate for RAIU rather than an ultra-sound.


----------



## sleepylady (Mar 18, 2012)

Andros,

What does RAIU actually do? I have read about it, but I'm not sure of its exact purpose.

I have u/s guided FNA scheduled because I haven't believed any of the doctors that I have gone to. If I could pull of Lovlkn's suggestion, I think I am at that point.

I thought the ENT would help, but although she is sending me for the tests, she cannot believe I can feel the nodule and even if it is bothering me, I have to deal with it if it isn't cancer. This has been a pain for 1 1/2 years. I have seen how people here attempt to function with numbers worse than mine and I honestly don't know how they do it.


----------



## sleepylady (Mar 18, 2012)

Also Andros,

Why don't doctors follow your thoughts?

If a person is making antibodies to his/her own organs, then something is wrong?


----------



## Andros (Aug 26, 2009)

sleepylady said:


> Andros,
> 
> What does RAIU actually do? I have read about it, but I'm not sure of its exact purpose.
> 
> ...


Did not know you had an ultrasound and FNA scheduled. This is good. Ultrasounds do have their limitations.

RAIU is much more thorough and of course it determines your rate of uptake as well. http://www.webmd.com/a-to-z-guides/radioactive-iodine-uptake-test

When is your FNA? One thing at a time is my philosophy. Let's see what develops from that.


----------



## sleepylady (Mar 18, 2012)

Earliest appt I could get was 8/22.

I have two nodules 1.1cm and 8mm. Biggest is Hypoechoic w/irregular borders. Nothing else identifying was written on report. That is the one that I previously mentioned bothers me (but they say I can't feel it)

My thought when I posted this was if I could get a doc to listen to me maybe I could get treated. But I don't know what treatment that would be with "normal" blood tests. So I figured maybe you guys could just provide some insight.


----------



## Andros (Aug 26, 2009)

sleepylady said:


> Earliest appt I could get was 8/22.
> 
> I have two nodules 1.1cm and 8mm. Biggest is Hypoechoic w/irregular borders. Nothing else identifying was written on report. That is the one that I previously mentioned bothers me (but they say I can't feel it)
> 
> My thought when I posted this was if I could get a doc to listen to me maybe I could get treated. But I don't know what treatment that would be with "normal" blood tests. So I figured maybe you guys could just provide some insight.


To answer a question you posed in a previous post; I do believe a lot of our health care or NOT is mandated by insurance. It is glaringly apparent to this layperson as evidenced by the antibodies that you in fact do have autoimmune thyroid disease.

Irregular borders raises an eyebrow. Was FNA recommended?


----------



## sleepylady (Mar 18, 2012)

Andros,

The ENT is kind of wishy washy but said maybe they could biopsy the 1.1cm. She isn't concerned in the least. I am concerned because I don't trust any doctor that I have been to so far. So the U/S guided FNA is scheduled for 8/22 at 9:00am.


----------



## Andros (Aug 26, 2009)

sleepylady said:


> Andros,
> 
> The ENT is kind of wishy washy but said maybe they could biopsy the 1.1cm. She isn't concerned in the least. I am concerned because I don't trust any doctor that I have been to so far. So the U/S guided FNA is scheduled for 8/22 at 9:00am.


It's a bad situation. I don't trust many docs either. They just want to make their quota.

Hurry up 8/22/12!!


----------



## sleepylady (Mar 18, 2012)

Do you know of anyone with pulsatile tinnitust?
My husband thinks I am crazy, but I have had a whooshing in my ears for the last 2 days

I just wish someone would help me and soon.


----------



## Andros (Aug 26, 2009)

sleepylady said:


> Do you know of anyone with pulsatile tinnitust?
> My husband thinks I am crazy, but I have had a whooshing in my ears for the last 2 days
> 
> I just wish someone would help me and soon.


How is your blood pressure?


----------



## sleepylady (Mar 18, 2012)

Checked about 2 weeks ago it was 125/75.

Jan. I had anxiety attack because of chest pain
Once heart was ruled out blood pressure dropped.
154/96 back to 104/64.


----------

