Hello everyone, this is my first time posting but I've been lurking just reading posts as a guest for a long, long time. But now I must ask for help with my symptoms of Hashimotto's/Hypothyroidism as my Endo has "given up on me" and said my TSH has been stable and referred me back to my Family Practioner to monitor TSH ONLY!!! I have been on Levothyroxin for over 10 years now. I'm a 37 year old male. They started my dose at 50 mcg of Levothyroxin and gradually increased my Levothyroxin until I'm at my current dose of 137 mcg. They did the increases based off my TSH levels. Well, over the last several years my hypo symptoms are getting worse. My Endo stated "Look at your TSH, your thyroid isn't causing this" so he sent me down years of Clinical Depression medications, all which never helped. It wasn't until recently I got tired of my Endo ONLY watching my TSH, arguing with me on my symptoms and never even trying another med, or adding another med. So I had to pay out of pocket to get a "complete" thyroid lab workup done. Below are the results for anyone who may know what they're reading:
My Endo that gave up on me refused to change medication, add medication, and in fact told me that there was no point in checking for Thyroid Antibodies because we can't stop them unless we remove my thyroid. No thank you.
My family Dr. consulted with me yesterday and started me out by lowering my Levothyroxin dose from 137 mcg to 125 mcg and is adding 5mcg of Cytomel once daily. I'm not sure Cytomel once daily will help, but I will try to see if there's any improvement.
Does this story or lab numbers look familiar to anyone? If so what would YOU recommend, or what would you do?
My symptoms are: Severe brain fog, lack of concentration, extremely forgetful, very lethargic, lack of restorative sleep, weight gain on reduced calorie diet, constant feeling of being bloated after eating anything, even a small meal, ZERO metabolism and lately body fat gain in the mid section.
Please, please, please help and make any suggestions you can!
Thanks,
Sleepy Steve
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Snevey
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Well, stop the low-calorie diet, for a start! It's affecting your conversion - you need calories to convert.
Your doctor did the right thing by lowering your levo slightly, and adding in some T3, BUT who much that is going to help, depends on his next move - i.e. increasing the T3 after two weeks or so. It's good to start low with T3, but 5 mcg isn't going to do very much. So, do remember to ask for an increase. And, at the same time, a further reduction in T3. It's the unconverted T4 hanging around that is causing the high rT3.
Also ask for your to test your nutrients - vit D, vit B12, folate and ferritin. He won't understand the results, but you can post them on here, because we will.
Thanks for the reply. When I say low calorie diet, I mean just enough to MAINTAIN my body weight as it seems now that anything I eat causes extremely uncomfortable bloating and feeling of fullness for up to 8-10 hours! My daily caloric intake is probably 2,000 to 2,500 calories a day.
I was thinking the same thing about the dose of T3 I'm being put on. I was thinking 5 mcg isn't going to put a dent in symptoms, especially with how quickly T3 metabolizes and is out of the body. I was hoping for a dose of T3 that was close to an 80/20 T4/T3 combination.
You wouldn't want to start on a dose of 20 mcg T3, that would be too much of a shock to the system. With hormones you always start low and increase slowly. But, it will need increasing. And the T4 decreasing at the same time. I just hope your doctor realises that.
T3 is out of the blood in about 12 hours, but it stays in the cells for several days.
I do understand that starting T3 at a high dose, or any other hormonal drug at a high dose is a bad idea! I thank you for your many responses. I just feel stuck. I originally told my Family Practitioner of my symptoms, he ran a few tests, saw that my TSH was high, started me on T4 of Levothyroxin 50 mcg and adjusted higher until my my TSH was normal. I however still reported the same symptoms over time and that when he tested for thyroid antibodies. Once he saw thyroid antibodies as high as they were, he referred me to an Endocrinologist. That Endo's office had very high turnover and now on my 4th Endo, she see's that my TSH has been in the normal range for the last several years and has now referred me back to my family practitioner for TSH monitoring. I paid out of pocket for the complete thyroid panel lab work! The Endo refused to test for anything other then TSH. Really????
Yes, I know it's frustrating. But, let's look at this logically. First of all, there's no such thing as a universal 'normal'. You've got to find what is normal for you. What was your TSH when it was declared 'normal'? Too high, I bet!
TSH is a very bad indicator of thyroid status, anyway, so we won't dwell on that. Right now, you have two major problems :
a) your rT3 is too high because you have too much unconverted T4 in your system. Therefore, you need to lower your T4.
b) because you're a bad converter, your FT3 is too low. You need to take some T3 to feel well. Your doctor has made a start by prescribing 5 mcg of T3. The question now is, is he going to increase it?
If he doesn't, what is wrong with buying your own and sorting out your own dose? Millions of us do it. I do it. Of course, it would be a better situation if we could get it from our doctors, and out doctors knew what they're doing. But, they don't, so if we can't get T3 from them, the choice is - buy our own or stay sick. I've made my choice! With absolutely no scruples.
I live in the US where T3 medications require a prescription. I have found a few overseas pharmacies that sell generic versions of just about anything, but who do you trust? How do you know you're getting what you want? It's a scary place in the black market of online medication shops! If you know of a reliable online source for synthetic T3, by all means, PM me that info!
The usual story! Once upon a time you were well. To be well, you had your own levels of TSH, FT4 and FT3 which defined you. Not anywhere in the reference (normal) ranges but THERE exactly each in your unique stable point. But you don't know what that was, because in health you didn't go to the doctor and ask for thyroid tests (as nobody does). Now you are ill, even on therapy What's now needed is a liberal unbiased assessment of you as an individual, and the target is to get you back to your original healthy situation BY WHATEVER MEANS. Some of your tests are before the Ark - T3 uptake is a test that today should never be done - but the FT3 is really indicative. As is rT3 - you're struggling on T4. The "sink" of getting enough FT3 from T4 is overloading.. You may be a poor converter. Trying by high T 4 is taking over from useful treatment b y forcing the "sink" .You may be a poor converter of T4 to T3. The ratios tell me so.
Yes! This exactly! I don't have a baseline blood test showing what my levels were because I was well and I had no reason to test them. Now I feel like I'm in h*ll, and I have no one to help me. I even started looking at online Indian/Turkish pharmacies to order my own T3 from and monitor my lab work myself and adjust medication myself on a controlled manner. That's not the right way to do things, but if you're helpless, sometimes you need to do what you need to do to feel well again.
So do you think lowering my T4 dose (Levothyroxin 137 to 125 mcg) and adding 5mcg of Cytomel (T3) will be a god start? I may even ramp the T3 up on my own after 5 - 7 days and call in a refill...
Hi Snevey, you have the autoimmune version of thyroid disease, which means you are producing antibodies which attack you thyroid tissue and hormones. Many people with Hashi's cut out gluten and dairy. The paleo 'Auto-Immune Protocol' is a lifestyle programme aimed at reducing antibodies and improving health. I have been on it since last October and feel loads better. Nice of your endo to give up on you. How lazy is that! Here is the link:
I don't think she liked the fact that I came in with some good questions for her, and also the fact that I had my own blood test done since all she wants to do is test for TSH. She did, however, give me a referral for a "Sleep Study" because thyroid health has nothing to do with quality of sleep and waking up exhausted... Her words, not mine.
If she hadn't already given up on you, I'd be suggesting giving up on her. Sleep is really important, btw, (but you probably know that already), one of the biggies in the protocol
Hi Steve, Im a Stefani in the US , besides all the great advice folks gave you I highly suggest a bumped up food sensitivity search as hormones rule our metabolism . I lost 25 after 10 yrs of nothing working thru Dr.Sara Gottfried protocols. I have BOTH thyroid antibodies sky high & have come down by half following the hormone reset. Here's some info
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