Someone... anyone... please help me!!

[FrustratedInIndy]

Hello... I'm hoping someone might be able to shed some insight on the living hell I've been in for over the last year. I'm a 36 year old female who was diagnosed with Graves' Disease in March of 2010. I had a Thyroid storm early that month and my Endo began the process of trying to regulate me. He wanted to Radiate my Thyroid and I refused, instead opting to research the disease and fight this my way. After three months of PTU, I was regulated, but I'd began to gain weight and my numbers were borderline low. I'd been over-medicated. I went to see the Dr. armed with information and he agreed we could try my way until my numbers came back off. I took all iodine rich food out of my diet, cut all iodine containing supplements and basically went on a high-protein diet. My levels were great, I felt great and for over four (4) years I stayed in remission by doing what I had researched, and I kept my Thyroid. An extreme event triggered my Graves' last August and I began gaining weight, struggling with exhaustion, etc. By December of last year, I'd gained over 10 pounds since August. Things continued to get worse but my numbers weren't showing anything 'wrong,' they were just getting lower for my normals. By March of this year, I could barely function.... exhaustion, fingernail issues, losing hair, night sweats, constipation, light or non-existent menstrual periods, constantly hungry (but not eating above my calorie range) a bad taste in my mouth daily and continued weight gain. By late-May, my numbers finally showed I was slightly low, on the hypo end of the scale. My Dr. put me on 25 mcg of Levoxyl. By mid-June, I was worse. We bumped it up to 50 mcg. At this point I had headaches so bad I couldn't focus my eyes on a daily basis. It was like living with a migraine every day. In early August, he bumped me up to 75 mcg -- switching me to brand name Synthroid at this point. That didn't help so he bumped me up to 88 mcg, which helped with the exhaustion. But even though I felt better, I still had all my symptoms and carried a daily headache. In late August, he added 10 mcg Cytomel to my 88 mcg of Synthroid daily. It was again an improvement but not 100% and I still had a daily headache.  I played with the Cytomel on my own and figured out that 15 mcg - 20 mcg of Cytomel daily along with my 88 mcg of Synthroid was helping. Headaches are finally gone... but I continue to gain weight along the 1 - 2 lbs. per week route. I also still have adema, constipation, reduced menstrual flow, bad nails, etc. So frustrating, It's affecting my social life, my professional life, etc. I can't wear any of my clothes and I don't want to see photos of myself as I'm just disgusted. At 5' 2" and 152 lbs, I'm 20 pounds heavier than I've ever been... and I hate it. If I were sitting on my behind eating Snickers daily, I'd understand, but I workout with a personal trainer, spend 5 - 6 days a weeks in the gym, work extremely physicial events and aim for a burn of 500 - 700 calories daily at the gym. I'm also eating 1,300 calories a day... which is the low end of my required with my workout plan. I eat well, low-fat, etc. I've watched the scale continue to climb, my fingernails are still scary looking and I still have some symptoms of being hypo... including headache as they Cytomel wears off before the next does. Does anyone have any suggestions as to what I'm doing wrong... what my meds might need adjusted to... or a suggestion of if Amour might be a better route?? Any all suggestions are welcome... my ears are open. -- Thank you!

[FrustratedInIndy]

Pretty excited... have an appointment with a new Endo that treats 'outside' of the box on 1/5/15. He's going to run the whole gauntlet of labwork and also believes in Adrenal treatment. At least I feel like I'm doing something vs. waiting on a doctor to do nothing. Look for an update the later part of January! Happy Holidays to all!!

[FrustratedInIndy]

My Ferritin lab just came over.

It read:

55 ng/ML                   15 - 150 ng/ML


Wondering if that's considered low?

[FrustratedInIndy]

Thank you very much for the information!! I appreciate it!!

[FrustratedInIndy]

Thank you for the reply... I appreciate it. Unfortunately, I've been left hypo so long (over 18 months) by my Endo that medication is going to be required to correct this.

The switch to Armour was a huge shift... I feel better than I have in 2 years. The synthetic Synthroid & Cytomel crap just doesn't mesh with my body.

The more I research, the more I've discovered that my Endo doesn't have me on enough Armour. And he needs to add some T4 back into the mix to help level it off.

Thank you again.. I'm hoping I can get to the point where I can get off medication and go the natural route... I'm just not there yet.

[gcanada]

I have two people in my family, on with hypothyroidism n graves, other with hyper n hasimoto.

I can tell you watching them , nothing worked besides a natural homeopathy treatment, and their levels are in range most of the time now.

I see them taking this one medicine, a few drops eberyday, and rest is all good. They do experience fatigue etc time to time but they are much much better than before

Im only posting to help. Plz disregard my post if it doesnt help woth what you are looking for

[Red_Star]

Okay.  Dosage wise, you could try lowering the Armour to bring the free T3 back down into range and adding synthetic T4 to raise the free T4 up. Free T4 can take a while to rise in the blood though so it can be a bit of a bumpy ride adjusting medication.

This is an excerpt from Tired Thyroid's article: Reverse T3: Side Effects of T3-only (or why you need T4 too)...

"Reverse T3 is a thyroid molecule that is similar to regular T3, except one of the iodine atoms is in a different position. This makes it inactive. T3 is the active hormone that the body uses.

High reverse T3 (rT3) levels or a “bad” reverse T3 ratio (Free T3 divided by rT3 is less than 20) are said to be the cause of stubborn hypothyroid symptoms even while one is taking an ample amount of medication. If the ratio is less than 20, then the treatment touted by some is to take 75-125 mcg of T3 only split throughout the day, and no T4 whatsoever. Some people can tolerate these high doses of T3, others cannot.

Why do so many experience side effects on the T3-only protocol? The reasons are explained in detail below, but here is a quick summary of what follows, which basically proves that the reverse T3 ratio theory is based on faulty premises. Recent research in cellular and molecular biology shows that:

rT3 does not block the receptor at all; neither rT3 nor T3 is in the receptor, that's the problem

T4 is more than a prohormone and is essential for healthy hair, brain, and other functions

Excess T3 will cause an imbalance in other hormones (it raises estradiol, which can be problematic, especially for men)

Excess T3 (desiccated thyroid has a high amount of T3) can trigger high reverse T3

Desiccated thyroid contains rT3, because rT3 is found in a normal thyroid gland [desiccated thyroid contains T4, T3, rT3, but little T2 or T1]

The reverse T3 ratio is a nonsensical number because the ratio can be low when Free T3 is high or Free T3 is low. A high FT3 and a low FT3 are different conditions and should not be treated the same way."

[FrustratedInIndy]

Yes.. I take 60 mg of Armour in the morning (on an empty stomach) and wait 1.5 hours before eating.

I take 30 mg of Armour in the evening on an empty stomach and again wait before eating.

I tried (as the doctor asked) to go down to 75 mg a day 60 AM/15 PM and my symptoms came back even stronger.

I've been on 90 mg daily consistently for 4 weeks and I feel better again.

Just still experiencing weight gain, constipation, ankle/leg swelling - but I am actually able to function.

[Red_Star]

Hmmm. Are you taking Armour twice a day? This is from Dr Mercola's article: Optimum Diagnosis and Treatment of Hypothyroidism With Free T3 and Free T4 Levels...

"Armour thyroid is desiccated thyroid and has both T3 and T4. Most doctors using Armour thyroid are not aware that Armour thyroid should be used twice daily and NOT once a day. The major reason is that the T3 component has such a short half life and needs to be taken twice daily to achieve consistent blood levels."

[FrustratedInIndy]

And regarding your diet suggestions... I'm already on a high lean-protein diet. I've seen a dietician at my doctor's suggestion (last December) and she told me I'm doing everything and more correctly in terms of my eating/workouts.

[FrustratedInIndy]

TSH                   0.203 uIU/mL         0.450-4.500

T3, Free             5.8 pg/ML              2.0 - 4.4

T4, Free             .96 ng/dL               0.82 - 1.77

Cortisol              18.3 ug/dL             2.3 - 19.4


Does this help?

My  VLDL Cholesterol & Triglycerides are all high as well.

Also, any suggestions to help balance all of this to get back to normal?

I feel so much better and he wants to reduce my dosage. We tried, and I got headaches and my symptoms got worse.

Armour has been a Godsend. It's really sad, but I've had to tell him what to try from the get-go. I just need an idea of how to correct all this as he won't even attempt to figure it out. He just wants to reduce my dosages and tell me I'm fine, even though I'm clearly not.

I think I may have a T3 binding issue?

Thank you for your help!

[Red_Star]

T3 usually suppresses TSH so it might look hyperthyroid but that doesn't mean you will be. What are your reference ranges?  I need to have both free T4 and free T3 at the upper end of the range although some are okay with free T4 midway.

[FrustratedInIndy]

my apologies for the delayed reply. I finally got my doctor to put me on Armour Thyroid for the past 3 months. 90 mg a day. While I feel better than I have in two years, I'm still experiencing Hypo symptoms.... constipation, weight gain, ankle/leg swelling, etc. Labs done this week were as follow:

TSH...      .203
T4, Free..  .96
T3, Free...  5.8

Vitamin D.... 57.8

B12 wasn't tested.
Ferritin lab is still pending.


My doctor is now telling my I'm hyperthyroid even though I feel better than I have in years. He wants to take me off of Armour Thyroid.

I'm also on Kariva 28 birth control pills. When I tried to come off of them last year, over 40% of my hair fell out.

Doctor is at a total loss... he's an Endo and basically told me he has NO idea why I'm gaining weight, still having symptoms.

The next step is to send me to Mayo... which he's supposed to do in the near future.

[Red_Star]

After all that lol...I should of added that you might want to try Natural desiccated thyroid extract.  In Australia there is only compounded Armour but in the US there are numerous different brands. I tried Armour and did very badly on it. Long story short, I didn't have enough pancreatic enzymes (needed for absorption of NDT) due to depleted stomach acid (after a year of hyperthyroidism). Also make sure you aren't taking calcium or iron or acid blockers when taking thyroid medication either.

[Red_Star]

I gained 9kg in 6 months due to hypothyroidism.  But even when I was hyperthyroid for a year I still lost no body fat (had muscle atrophy however) due to severe insulin resistance (due to eating refined sugar (never overeat due to a poor appetite) which worsened when I was hyperthyroid).  But with your symptoms of constipation etc it looks like you are still undertreated.

I've lost 13 kg so far and the first 12 kg lost without any exercise. I got my thyroid under control and cut out all refined sugar. I avoid anything that states low fat, light, skim etc. I want full fat flavour! :)

"People who avoid carbohydrates and eat more fat, even saturated fat, lose more body fat and have fewer cardiovascular risks than people who follow the low-fat diet that health authorities have favored for decades, a major new study shows." - New York Times - A Call for a Low-Carb Diet That Embraces Fat

STTM - Hypothyroid and Weight Issues–how to tackle it...

"So I’ve asked other patients over and over ‘”what do you eat?” And I’ve compiled a resource of answers from an embarrassingly large compilation, and culled out all the “losers”. So with those patients who did lose and maintained the loss, whether they are optimal on thyroid meds or not, I found out what they are doing.

First, most of the people have lowered their carb intake–stopped the incoming sugar as well as most anything white. Surprisingly, the majority are eating about 40 to 50 net grams carb a day (ages: 35 to 75)."