[Nicholas]

#1058705

Hi everyone,

It has been a while since my last post. After my second radioactive iodine treatment, I finally went hypo on Feb 2011 (with TSH > 150). They put me on Synthroid from a low dose moving up every 4 weeks or so and doing lab testing. Now after 2.5 months on 75mcg of Synthroid, I still not feeling well. My main symptom is severe fatigue / lightheadedness / mild dizziness. The symptoms come and go. I feel great for 3-4 days then not well for 2-3 days… and the cycle continues.

My labs are relative stable over the last 2 months with TSH in the range between 8-12 (Ref 0.4-4.5), Free T4 between 1.5-1.6 (Ref 0.8-1. and Free T3 around 2.5 (Ref 2.3-4.2).

I am still Hypo based on TSH, (however down from the 150+ four months ago so this is still a huge improvement). Here is what complicates things. Based on my weight, I need to be around 90mcg of synthroid. However, every time we try to increase Synthroid to 88mcg, I start getting hyperactivity symptoms (heart palpitations, sweating, fast heart rate, frequent BM etc.) This happens magically within 3 days after the dosage increases. So I call the Doc they say to reduce it back to 75mcg and then after a few days I feel better. But the fatigue does not go away.

Also, I have complete labs for over 10 years of thyroid testing, and I have noticed that when in the past I was in remission (and felt great) my FT4 was always around 1.2-1.3 (now it is at 1.5-1.6). However, my FT3 was around 3.1-3.2 (now it is only 2.5).

So my thinking is that my body might not convert T4 to T3 the same way like before. I want to ask the Doc to start me on Cytomel and see if this imbalance and fatigue improves.

Anyone had similar experience like mine? I have read some people improve with combination of T4/T3. Any thoughts/suggestions?

Thank you.

[Kimberly]

#1169472

Hello – Hopefully, you will get some responses from those who have tried adding T3 to their regimen. I have heard mixed reviews from patients. Some feel much better from adding T3…but others have found that it actually caused a recurrence of their hypER symptoms.

When you take T3 directly, you are getting a big dump of a very powerful hormone…but then it has a fairly short life span within the body.

One endo at our recent conference actually suggested splitting up one’s T3 dose throughout the day. (Although another doc said that this was not necessary…just goes to show how many differing opinions are out there!) Some endos are more receptive than others about adding T3.

[Ski]

#1169473

Hi Nicholas,

I’m just catching up on the BB, sorry this response is so late! The first thing I wanted to mention to you is that adding T3 to your replacement hormone CAN be helpful, but it is typically not pursued until your doctor is absolutely certain that it is not possible to create normal, stable levels with T4 alone. I’ve known several individuals personally who have moved toward supplemental T3, have felt better briefly, and have ultimately stopped the T3 supplementation due to the return of hyper symptoms.

Another thing you should know is that anytime you change your T4 dose, you will have a period of "seesaw" feelings, at least a couple of weeks where you feel hyper, then hypo, (either day to day or even back & forth within a day) but ultimately your body will adjust and you will level out so that you can really tell what effect the dose is having on your body. It’s very difficult to make dosing decisions on thyroid hormone replacement without waiting at least six weeks between adjustments, because the pituitary feedback loop takes a certain amount of time to be fully accurate and measurable.

How have your levels been since your post, and how are you feeling now?

[Jules]

#1169474

Sorry for the long post but I just wanted to chim in here. I switched from synthyroid to armour a t4/t3 disected thyroid product because is was having the same issues trying to get my life back from the hypo he’ll I was in.

My story, diagnosed July 2010 RAI Nov 2010 extramme hypo Jan 2011 tsh 79.8 as well as t4 and t3 not being in range not even close. I came down with a bad case of TED thT started before the RAI but the Dr did not believe me. With in 3 days of RAI I started having the begining of my TED issues. But that is a whole different story.

I had issues with the synthyroid almost immediately and was told tough there is nothing else. They started me on 1/2 of the lowest dose and I was to increase a 1/2 tab every 1-2 weeks until I hit .75. My TSH was decreasing but I felt like dog pooh. Everytime they did an increase i had anxity and heart palps and feeling of hyper eventhough my blood was showing hypo. When they tried to increase me to .100 I had a disconnect from my eyes to my brain to my body. They all worked just not together. I went back down to the .75 and after a week I tried again. Same thing happened with in 2-3 days with the disconnect. I went to a different dr. And told him what was happening he said to stop the synthyroid and try the armour. 1 grain he wanted to go higher but I was too scared so I asked for the lower dose.

I was so scared to try it, because I did not like any dose change because of the racing pulse chest pain dizzy etc…

On the day that I started it I took 1/2 of the dose in the am with water and the other half at 2 pm. By the next ,owning I was feeling wonderful. I had no brain fog no racing pulse etc… I tok it for 4 weeks and it was time for a blood test with my regular doc. I did the blood work and then went into his office. He said wow this is the best test yet. You look like you feel better. I told him Yes I feel great however I have to tell you, I went to a different doc about a month ago because of the dose increase issues I was having on synthyroid. I explains the situation and said the dr switched me to armour and I felt better but I needed to increase which shocked my reg doc because I had always balked at his upping my doses. He increased it to 1 1/4 grains and sates that my endo will not be happy because I am on armour. I told the doc no worries about the endo I am firing him for keeping me from feeling better.

I can say that for the past 2 months I feel great like I am finally sliding In to my sweet spot on my thyroid replacement. I have also noticed that my eyes are doing a lot better now that my labs are with in range.

Keeping my fingers crossed that I stay this course of feeling better.

What I wanted to get across is that why the main stream medicine thinks that synthyroid is the only med out there for hypo they are missing the boat when a paitents comes in with near normal blood tsh bud is still complaining that they Re having hypo symptoms. Some of us just don’t convert t4 like others can. I am proof that there is hope of getting away from the hypo he’ll I was in. My headaches are now non existent, eyes are getting better, brain fog is totally gone, my energy is almost back to normal, i think after the next dose increase i will be right where i want to be to feel normal. I no longer take the anxiety pills and I am happy again

Good luck with finding a doctor that will treat you with the t4 AND t3.

Jules

[Ski]

#1169475

We all end up having very different experiences with Graves’ Disease — the severity of our symptoms, the form our symptoms take, the path we take to wellness, ALL of these things vary from person to person. The one constant is that everything takes more time than we’d like, when we’re trying to regain our health. The fact is that we do not end up feeling truly well until we have reached, and maintained for some period of time, normal thyroid hormone levels. For each of us, again, this period of time varies, but the truth is that taking any form of thyroid hormone replacement takes time for the body to metabolize fully, and can take several adjustments before you hit the best point for you. Once the body has fully metabolized the dose so that tests are accurate (typically 6 weeks), you can proceed with adjustments. Each adjustment gets you closer to your goal, but there is no absolute formula that says a person at this stage of treatment who weighs this much and is this old should have exactly this dose, so zeroing in on the right dose to return you to health takes time, but try to celebrate this process and the journey as you go forward. Notice how you feel better today than you did last week, last month, last year. Keep a symptom diary for your doctor to assist in the process, and eventually you’ll find your spot.

[Nicholas]

#1169476

Thanks for your replies.

Unfortunatelly, I have not yet been able to find the best combination. I have to say though, that adding cytomel (T3) to the mix helped a lot. Have been on combination of synthroid (T4) 75mcg + cytomel (T3) 10mcg per day since late August. Overall I do feel improvement. In the top of all this I was tested within range (TSH at 4.1) two weeks ago. Then last week due to an issue with the pharmacy I was not able to refil my cytomel and run out. Within a couple of days, I started feeling dizzy and unwell. So it seems that at least in my case, having cytomel in the mix helps a lot.

Update: I had an appointment with a team of endocrinologists at John Hopkins recently, and they indicated there is a small group of patients (like myself) who do no metabolize correctly T4 to T3. This is why it is so important to have a baseline of your hormonal levels from when you were healthy and during the treatment. You shouls check if possible for all FT3, FT4 and TSH. My labs consistently have shown that FT4 is almost at the top of the range where my FT3 is at the low end. I believe this is where cytomel may help.

This is my short experience over the last few months. I am getting more cytomel soon from another pharmacy and hope for the best.

[Author]

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