TsamIam wrote: »

I'm confused. I guess I thought once my thyroid levels were "normal" again that I wouldn't feel so tired. I used to sleep the weekend away with 5 hour-at-a-time naps. My TSH was at 80.15 then (T3 = normal, T4 = low, TSH = High). After a month of levothyroxine, my TSH is now 2.64 which my doctor says is normal, but... I will still feel tired at times. I know it could be stress and other stuff, but every now and then I will still spend 12 hours of a Saturday sleeping during the day because I just can't do anything else. I do get up and make myself eat, but I'm still tired.
I mention being tired to my doctor, but I also just had a pulmonary embolism so I feel like the tiredness complaint gets lost in the noise of that. I'm trying to lose some weight too, to prove it's not being a few lbs overweight or a lack of exercise. I have felt a tiny bit more energetic, but... heck it could be a placebo effect just from knowing I'm taking some meds.

Have you guys felt significantly better once your thyroid levels were normal again?

Yes and no. For quite a few of us (myself included), it ultimately ended up being more than just a thyroid issue. After about 10 years of suspecting a thyroid issue and seeing several docs, I finally found a doc that looked at the entire picture of my symptoms and not just TSH or even just thyroid. He did a bunch of tests based on my symptoms (fatigue was one of my major ones - I slept hours and hours like you describe too and still didn't feel rested most of the time). In addition to the thyroid stuff (TSH, Free T3, Free T4 and antibodies), he also tested for liver enzymes, adrenals (DHEA, cortisol, etc.), blood sugar issues (AC1) and common vitamin and mineral deficiencies (D, Magnesium, Iron, Iodine, etc.).

He told me that testing for adrenals was particularly important because if your adrenals weren't functioning properly (which is common for many with a long untreated thyroid problem), you can even initially feel worse starting thyroid meds. This is even in the Physician's Desk Reference, but a shocking number of docs and endos don't check for this at all.

For me, after everything was said and done, in addition to the thyroid, I had low DHEA and Vitamin D (both of which are super common for women with Hashi's) as well as magnesium deficiency (very common in the population in general) and insulin resistance at prediabetic levels. The last was the big shock to me as even at my heaviest, I was only 30 lbs overweight, and on a 5'9" frame it put me in only in overweight category -- I couldn't believe I had pre-diabetes. He told me that this isn't that uncommon for people with long untreated thyroid issues because like the adrenals, this is one way the body attempts to compensate for the underperforming thyroid (or so they think as they often see them together).

So, it's totally possible that one or more of these things may be causing you fatigue as well. I know low Vitamin D and low DHEA in particular have the symptom of fatigue. Also, if you have Hashi's (which is the most common cause for hypothyroidism), it's possible that you actually need more thyroid meds because some of your active hormones (especially T3) are being blocked by your antibodies. That's why it's so important to also test for BOTH Free T3 and Free T4 -- TSH doesn't always show the whole picture -- in addition to looking at your actual clinical symptoms.

Here's a good article that describes the issue: http://www.thyroid-info.com/articles/woliner.htm

So, for me, I had to get all of these things sorted out until I felt "normal" again -- we semi-jokingly will refer to these things here as getting your personal stars aligned. The thyroid meds alone helped, but I didn't get full symptom alleviation until the other things were worked out too. I also found personally that I do much better on a primal style diet. Dairy seems to be fine for me, but something in grains, especially the highly processed/refined type, just impact me. When I stop eating them and focus on primal foods, I feel a lot better overall, including sleeping a lot better. Occasional oatmeal seems to be okay (pure oatmeal is gluten free), but anything beyond that and I just start to feel really tired, run down, lethargic, bloated, etc. I suspect it's because those foods trigger the Hashi's or other things like a low level gluten intolerance that ultimately result in the fatigue and other symptoms.

Hi I too have hypothyroidism, diagnosed over 2yrs ago, I slept constantly, so so tired felt I was letting my family down as some days couldn't even prepare a meal for them, since Feb this yr I have been leading a healthy active lifestyle. And I did feel so much better so it I've lost 11lbs but this wk I've hit a crash, got my bloods done it came back they are off so increased my doze of levothyrocine from 100 to 125 go back in six wks to get checked again, I also get 3 monthly bit b 12 injections , I have a lump also on my neck got scan they are unsure, now to go to ear nose and throat hospital for check up, I am not going to give in I am still ging to try and get out walking as much as possible even though I was doing boot camp for 4 wks I think I may have just overdone it , I rest but I definitely will get back to it , my thoughts are it's better to be doing light exercise than none at all , good luck with your journey everyone x

I wish for all British and European members that we were able to achieve a full blood panel. How can we hope for this when reasonable doctors requests for t3 to be tested is deemed too expensive by the hospital lab being used? Penny wise £ and Euro foolish. How many of us have been diminished by unsatisfactory testing/treatment? Some of us are unable to live the life they wanted.

slieber wrote: »

I am hearing and reading so much conflicting advice regarding the kind of exercises I should be doing to keep up my stamina. I have pretty much given up trying to lose weight. But I would like to have more stamina. I have read on the one hand that cardio exercise will make my hypothyroidism worse. I have also read that it will make it better. The same with weight lifting. Does anybody know what the real deal is regarding exercising with hypothyroidism?

Exercise will not make thyroid conditions worse. Even light cardio is tremendously effective - simply walking 30mins/day has numerous health benefits and will aid in building stamina.

Much of this is a mental game, one which you can will yourself out of. Make small goals initially that are achievable and break them. Continue to build upon these goals and raise the bar - breaking previously established barriers and see how far it takes you.

Regarding testing in the EU there are certain laws inhibiting HCPs from testing unnecessarily. You can work with them to identify blood panels which would be most helpful to you and you can pay for the tests out of pocket. This may help you diagnose what it really going on. That's the problem with thyroid conditions - the symptoms are too general and non-specific.

http://www.ncbi.nlm.nih.gov/pubmed/22450344

This is one of the few clinical studies regarding T3. Note that the control group consists of athletes, so no correlation to general population, but interesting in the short term.

T3 will be used up in cases of extreme exertion (75-90% effort). Note that this is only a small factor in the hormone balance as all hormones will be out of balance in the short term following periods of extreme exertion.

Not saying it doesn't happen as you describe, but stating the research is extremely limited given the availability of control groups. T3 is a very tricky analytic as it is extremely variable and each person has a different baseline - also in line with TSH, T4, and RT3 - each susceptible to internal and external stressors. This problem is compounded by limited time to treat holistically and with patients being able to communicate with their primary HCP.

What you're describing is what we term a "terminal cascade" where one adverse experience impact another, and another, until it becomes critical. Prevention is key; however Western medicine has operated under a "cover your a__" mode for far too long due to uncontrolled litigation. The entire practice of medicine needs to change, but we need to remove insurance as it is currently being used.

lindsey1979 wrote: »

I think a lot of the exercise versus t3 issue comes down to bodily stress. Certain types of exercise, especially habitually, will wear down the body if not given proper recovery time—weight lifting, long distance running, etc. This is why people that do such things usually need to work in recovery weeks (in addition to other mechanisms). This is likely all the more important for those with thyroid issues as we generally tend to be more sensitive to such fluctuations.

QFT (quoted for truth). Everybody's different, so it'll take trial & error to find what works for you. I walk and do yoga, and I rest a lot more than most of my "normally thyroided" MFP friends.

I've struggled with energy and fatigue increase after/during exercise. When I was younger and still had a functioning thyroid, I'd exercise for hours, so I am completely aware of what a good workout feels like. I agree that other aspects need testing and treatment, such as D3, magnesium, adrenals, etc. methylB12 and DHA Omega 3s also helped my cognitive fatigue. Doctors don't always seem capable to see how multiple conditions interact too - i also have insulin resistance and anemia with iron deficiency. Some of my meds caused such GI distress that I was not absorbing my thyroid and then those symptoms also got worse. I have to be my own advocate and the primary expert of my body and health.... And I constantly have to remind myself that if my body doesn't burn fat or carbs correctly, eating enough protein is crucial. (PS-just discovered myfitnesspal, so add me if you get my struggle. I'd love the encouragement)

lindsey1979 wrote: »

TsamIam wrote: »

I'm confused. I guess I thought once my thyroid levels were "normal" again that I wouldn't feel so tired. I used to sleep the weekend away with 5 hour-at-a-time naps. My TSH was at 80.15 then (T3 = normal, T4 = low, TSH = High). After a month of levothyroxine, my TSH is now 2.64 which my doctor says is normal, but... I will still feel tired at times. I know it could be stress and other stuff, but every now and then I will still spend 12 hours of a Saturday sleeping during the day because I just can't do anything else. I do get up and make myself eat, but I'm still tired.
I mention being tired to my doctor, but I also just had a pulmonary embolism so I feel like the tiredness complaint gets lost in the noise of that. I'm trying to lose some weight too, to prove it's not being a few lbs overweight or a lack of exercise. I have felt a tiny bit more energetic, but... heck it could be a placebo effect just from knowing I'm taking some meds.

Have you guys felt significantly better once your thyroid levels were normal again?

Yes and no. For quite a few of us (myself included), it ultimately ended up being more than just a thyroid issue. After about 10 years of suspecting a thyroid issue and seeing several docs, I finally found a doc that looked at the entire picture of my symptoms and not just TSH or even just thyroid. He did a bunch of tests based on my symptoms (fatigue was one of my major ones - I slept hours and hours like you describe too and still didn't feel rested most of the time). In addition to the thyroid stuff (TSH, Free T3, Free T4 and antibodies), he also tested for liver enzymes, adrenals (DHEA, cortisol, etc.), blood sugar issues (AC1) and common vitamin and mineral deficiencies (D, Magnesium, Iron, Iodine, etc.).

He told me that testing for adrenals was particularly important because if your adrenals weren't functioning properly (which is common for many with a long untreated thyroid problem), you can even initially feel worse starting thyroid meds. This is even in the Physician's Desk Reference, but a shocking number of docs and endos don't check for this at all.

For me, after everything was said and done, in addition to the thyroid, I had low DHEA and Vitamin D (both of which are super common for women with Hashi's) as well as magnesium deficiency (very common in the population in general) and insulin resistance at prediabetic levels. The last was the big shock to me as even at my heaviest, I was only 30 lbs overweight, and on a 5'9" frame it put me in only in overweight category -- I couldn't believe I had pre-diabetes. He told me that this isn't that uncommon for people with long untreated thyroid issues because like the adrenals, this is one way the body attempts to compensate for the underperforming thyroid (or so they think as they often see them together).

So, it's totally possible that one or more of these things may be causing you fatigue as well. I know low Vitamin D and low DHEA in particular have the symptom of fatigue. Also, if you have Hashi's (which is the most common cause for hypothyroidism), it's possible that you actually need more thyroid meds because some of your active hormones (especially T3) are being blocked by your antibodies. That's why it's so important to also test for BOTH Free T3 and Free T4 -- TSH doesn't always show the whole picture -- in addition to looking at your actual clinical symptoms.

Here's a good article that describes the issue: http://www.thyroid-info.com/articles/woliner.htm

So, for me, I had to get all of these things sorted out until I felt "normal" again -- we semi-jokingly will refer to these things here as getting your personal stars aligned. The thyroid meds alone helped, but I didn't get full symptom alleviation until the other things were worked out too. I also found personally that I do much better on a primal style diet. Dairy seems to be fine for me, but something in grains, especially the highly processed/refined type, just impact me. When I stop eating them and focus on primal foods, I feel a lot better overall, including sleeping a lot better. Occasional oatmeal seems to be okay (pure oatmeal is gluten free), but anything beyond that and I just start to feel really tired, run down, lethargic, bloated, etc. I suspect it's because those foods trigger the Hashi's or other things like a low level gluten intolerance that ultimately result in the fatigue and other symptoms.

I'm new to the forum and just wanted to say thank you for this message. I was diagnosed with Hashi and my first Dr dismissed any treatment. This will help me talk with my new Dr.