Thyroid Advice - Please help if you can

[DD2992]

I need help! Any advice would be very appreciated especially for those who have success stories/tips to share with me.

I had a thyroidectomy in 2004. I had goiters, cysts, and a tumor entangles in my esophagus and thyroid. They checked for cancer, I was cancer free. I had extreme hyperthyroidism before surgery. They removed 90% of my thyroid. I have a little bit of thyroid left on my right side.

After surgery my Endocrinologist at the time only gave me T3 for some reason. I was on T3 only for 3 years! I gained 30 pounds, exhausted, in horrible condition. I told my doctor I didn’t want to goto that Endo anymore. So the doctor decided to prescribe and monitor my thyroid from there in 2006. Guess what he prescribed? 100 MG of synthroid. Not 25 starting me out slow, 100! Needless to say, I was in the worse health of my life and he had no idea why. Lost my job because I had such bad anxiety along with other digestive issues.

Well I am still struggling to find a good Endocrinologist in the St. Louis, MO area. I have been on the waiting list to see Dr. Wessling and wont be able to see him until June. I have been on Naturethroid 1 grain and take 1 ½ of 25mcg levothroxine everyday. I have been on Naturethroid for almost two years. I do feel a lot better than being on T4 only meds! Below are my latest tests. I am feeling better since Naturethroid, but still VERY symptomatic. Symptoms: Loss of hair, very dizzy at time, Anxious, and just feeling off all in general.

I recently had an ultrasound done and they found no goiters or cysts, etc and I still have a bit of my thyroid left. They tested me for Hashimotos and it came back negative. (Thyroid Peroxidase AB/ABTI-TPO: <10 – Reference Range=<35)

My questions:

Should I take iodine even though I only have 10% of my thyroid left? Get blood tests first?
Should I start taking Selium? Should I get blood tests before or can I start it immediately?
Can I still have Hashimotos even though I tested negative for it and do not currently have goiters or cysts proved via ultrasound recently? If so, what tests can be done to prove I have it?
From looking at my labs below, would you recommend I try all natural and remove the Levothroxine and only be on Naturethroid? I know a lot of you feel better with the T3s in the higher range, which would happen to me since my T3s are currently in range. Wondering if this would make me feel better. I never had luck on Levothroxine in the past but am only on it to increase my T4 levels. When my T4 levels were extremely low 8 months ago I was having extreme hypoglycemia episodes and extreme dizziness and chronic congestion. This is after a year I was on only 1 grain of naturethroid. They added the levothroxine about 8 months ago and my congestion went away and am feeling better but still very symptomatic.

Labs on 2/5/13:
FREE T4 .93 (0.78-2.19)
T3, TOTAL 1.600 (0.970-1.690)
TSH 0.164 L (0.465-4.680)

I understand I am hyperactive right now. My Endocrinologist told me to keep taking the same dose but reduce my Levothroxine every Sat and Sunday. Last visit he let me down by telling me the TSH is the most important and that he forgot I was taking Naturethroid in addition to my Levo.

Please, any advise would be great. I am wondering if I just increased my Naturethroid and cut out the Levo if I would feel better. (of course with doctors approval) Or perhaps increase the Naturethroid but still take 25 mcg of Levo just to keep my T4 higher.

Current dose: 25 mcg T4 (levo) 38 mcg T4, 9 mcg T3 (Nature Throid) Total= 75.5MCG T4 9MCG T3 After these labs, the endo told me to reduce my Levo by only taking 25 mcg on saturday and sunday but keeping everything else the same which I have been doing.

I also got a Hemoglobin Alc test done to test for diabetes and the results were: 4.6L (4.8-6.0) but the Endo said I was fine and didn’t have any issues with my blood sugar.

[leilajax]

I'm currently waiting for my most recent levels to be mailed to me (but I was told I was within range).  The last T4 that I have on record was total T4 of 7.4 (range 4.5-12), before that FT4 was 2.6 (range .8- 2.7) in November.  I have only ever had hyper results.  I was told it was post partum thyroiditis, but once the meds (for hyper) got me back to within normal range and I discontinued medication my symptoms never went away.  I am feeling just awful with you.  They have a cure for so many diseases or at least treatment, yet no one seems to know how to help us!  What are all of your symptoms?

Me: cold hands and feet, chest pain, muscle spasms, nervousness/anxiety, heart palpitations, sinus issues, pain in the bottom of my feet, weight loss, brain fog, double vision, joint pain, weak muscles, exhaustion, difficulty concentrating, dry/gritty eyes, dry thin skin, shooting pains in lymphatic areas (underarms, back of skull, behind eyes), constipation, tightness in chest, throat, and jaw, ringing in ears, sudden carpal tunnel syndrome, hair loss, dry nails, neck pain with numbness and tingling in hands, heart skips a beat/ pauses.  I know, the list is ridiculous... and it keeps growing!

As you can see some of my symptoms seem hyper, some seem hypo.  The only thing that the doctors can agree on is that my TPO shows that I do have Hashi's, but we don't know what to do about it since my levels are always in range and I have both hyper and hypo symptoms.

I'm so sorry that you are feeling awful, again.  I'm sure that you were hoping that you were out of the woods.  Praying that you find a good endo, too and that you feel much better again soon!

[DD2992]

Leila- How are your T4 levels? Specifically your FreeT4 level? If its low, please ask to increase your dose to relieve some symptoms.

[DD2992]

Hi Leila-

When I first started Naturethroid I was only on 1 grain, which was much less than what I should have been on. So after the first few months, I developed chronic congestion, literally couldn't breath out of my nose, hypoglyemic episodes which got awful, etc. This was all because my T4 was low. Therefore we added T4 medicine (levothroxine) to my 1 grain of Naturethroid. Almost immediately my nose started running which hasn't happened in forever. I'm still very symptomatic, I was doing great a month ago, but have been feeling AWFUL here recently. Not sure whats going on. I hope to find a good endo that can help sort all this out.

Thanks Gimel for your advice!

[leilajax]

Sorry to butt in... as I wish I had some wonderful advice, but if you don't mind... I'm curious about your blood sugar and congestion issues.  I have told every doctor that I've seen that all of my symptoms (brain fog, dizziness, numbness/tingling, muscle pain, joint pain, constipation, cold intolerance one week, heat intolerance the next) that they are all related to the some sort of moderate sinus problem that comes and goes with the symptoms.  They all just look at me puzzled and say "that's weird".  I haven't seen many people list congestion, so it's nice to see that I'm not alone and that symptom has seemed to have resolved with meds for you.  Also, the blood sugar thing:  I was gestational diabetic during all of my pregnancies, so I'm not new to monitoring my blood sugar.  Recently, during my extreme bouts of nausea I've started testing my blood sugar just to see... and low and behold my blood sugar is usually 73 or lower even within hours of eating a normal meal (even fatty fast food).  This is way low for me, who usually is is in the 120-140 range after eating.
Could you please post any connection that you have found with your thyroid issues and congestion and blood sugar?  

[gimel]

The doctor was recommended by a fellow member, but unfortunately, I didn't record that member's name.  If interested, you could find out lots more by calling and saying that you are interested in making an appointment but would like to ask a nurse two questions first.  That usually works to get a nurse on the phone.  Then ask if the doctor is willing to treat clinically by testing and adjusting Free T3 and Free T4 as necessary to relieve symptoms, without being constrained by TSH results.  Also ask if the doctor is willing to prescribe meds containing T3, such as Armour or Nature-Throid.  If either answer is no, then you should keep on looking for a good thyroid doctor.

[DD2992]

Thanks for responding gimel! I seen your PM do you know someone that has had good luck with this endo? Does he or she entertain the idea of naturethroid? Symptoms:                                                 dry mouth (excessive urination), dry skin, hair falling out/extremely dry, dizziness often, become anxious at times due to not feeling well or feeling out of it. Pressure in the head. The low sugar symptoms are out of the picture after adding the t4 to the naturethroid. Also am not congested anymore, but still dizzy at times and out of it. Brittle nails, etc 2 yrs ago started nature throid after t4 only meds, then the added the t4 since my t4 levels were so low. Now the t4 is getting up but still feeling awful at times. Like I never have a good day or feel well, but push through it hoping ill get where I need to be. I'm not where I was a yr ago, am getting better, but still not good. Thanks for all your advice. I appreciate it so much.

[DD2992]

Thanks for responding gimel! I seen your PM do you know someone that has had good luck with this endo? Does he or she entertain the idea of naturethroid? Symptoms:                                                 dry mouth (excessive urination), dry skin, hair falling out/extremely dry, dizziness often, become anxious at times due to not feeling well or feeling out of it. Pressure in the head. The low sugar symptoms are out of the picture after adding the t4 to the naturethroid. Also am not congested anymore, but still dizzy at times and out of it. Brittle nails, etc 2 yrs ago started nature throid after t4 only meds, then the added the t4 since my t4 levels were so low. Now the t4 is getting up but still feeling awful at times. Like I never have a good day or feel well, but push through it hoping ill get where I need to be. I'm not where I was a yr ago, am getting better, but still not good. Thanks for all your advice. I appreciate it so much.

[gimel]

Please clarify all the symptoms you currently have.   Also sending a PM with name of member recommended doctor in St. Louis, for your consideration.

[DD2992]

Thanks Goolarra for your comment! I plan to stick to the same dose of Nature Throid and Levo, hoping my T4 levels increase. My T4 levels have come up alot the past 8 months, so hopefully in time the T4 will get to where it needs to be. Maybe at that time I wont have so many awful symptoms. I swear the dizziness is the worse of them all. I also have dry mouth constantly causing me to urinate all the time! Hopefully one day I wil get there. What a struggle. Not where I used to be, so I hope it continues to get better. Just when I have these episodes, it gives me such discouragement.

So you don't believe I am hyper? Since he has increased my T4 the TSH went way down. I'm sure the TSH will get better after a while. Maybe he should not have decreased my T4 at all? He only decreased my T4 by
having me take 25 mcg of levo on sat and sunday instead of 1 1/2.

I felt a bit better a few years ago on Levoxyl instead of Levothroxine. Perhaps taking Levoxyl instead of Levothroxine will help with my symptoms.

Thanks again. I really really appreciate your input!

[DD2992]

Hi Gimel! Do you have any insight here? I would appreciate it a lot!

[goolarra]

With only 10% of your thyroid left, I'd doubt that iodine would make a lot of difference in what it produces.  If you decided you'd like to try it, by all means, test first.

Selenium is essential for conversion.  So, people with lower T3 tend to supplement selenium.  It can be toxic in high doses, so label directions should be followed.  With your high T3, I'd doubt selenium deficiency is an issue.  Once again, it's always best to test before starting.

Again with only 10% of your thyroid present, whether or not you have Hashi's is kind of a moot point.  Some of us with Hashi's are TPOab positive, some TGab positive and some both.  You could have TGab tested.  The next step after that would be biopsy to rule out Hashi's.  Why are you concerned?

Your doctor has ordered total T3, which is considered an obsolete test, of limited use.  Next time, he should order FREE T3.  FT3 tells the amount of T3 that's actually available to your cells, and that's what's important.

That being said, your T3 is just below the top of the range.  FT4, on the other hand is low.  It's just over 10% of range, and target for FT4 is midrange (50%).  I don't think you can afford to increase your NT at all...you're FT3 will be over range on any increase.  What needs to increase is your FT4, and the only way to do that without increasing FT3 at the same time is to increase your levo (perhaps requiring a slight decrease in your NT at the same time).

You're not hyperthyroid.  Your doctor is looking at nothing but your TSH and telling you that, but you're only hyper if you have hyper symptoms, and you still have hypO symptoms.  Your FT3 and FT4 are out of balance, and you need meds changed, but you are not hyper.  

i would guess that your doctor's meds changes are not going to make you feel any better and quite possibly could make you feel worse.  

Have you contacted gimel about a doctor in your area?  He keeps a list of doctors recommended by forum members.  He might have a name for you.