Longtime Hypo, New Dieter, Clueless

blinx7

I was treated with radioactive iodine in college due to an extremely overactive thyroid and needed two doses, pretty much killing my thyroid dead. I was basically told "take this one pill a day and don't worry about it" and I did. 15 years later, I gained weight and have been working on a diet. I've been frustrated with the rate of progress, logging pretty precisely on a rate for a 1.5 pound loss but losing less than 1 pound a week.

I realized I knew nothing about my thyroid problem and am now trying to catch up. I've been doing some things all wrong, like just taking my pill after breakfast (or randomly during the day if I forget), drinking big cups of milk and coffee right after taking it, etc. I am pretty good on daily adherence (I don't miss a dose that often) but haven't been good at regulating and optimizing uptake. I'm resolving to get better at that.

My current tests show:

TSH = 3.92
T-3 = 2.8
T-4 = 1.46

I am a 35 year old male (well, will be one tomorrow) and I am on a 200mg a day dose.

From what I read, these are moderately high levels for someone still in there 30s (and that 95% of people under 40 without a thyroid problem have a TSH of under 2.5).

I'm going to work on things on my end, but I feel this is pretty high and partly to account for slow rate of loss and that I should go to an endocrinologist to get a more thorough assessment (right now I'm being treated by a GP with a DO who just sent an e-mail saying "you're within normal").

Curious if anyone has thoughts (on the thyroid levels), advice, etc.

bametels

Happy Birthday!

I'm sorry to hear that you've been dealing with such serious and frustrating thyroid problems. I don't think the average person or even doctors who treat thyroid patients have any idea how miserable thyroid disease can be.

I've had thyroid problems for a very long time. I've been both hyper (due to thyroiditis) and hypo (due to damage to my thyroid caused by the thyroiditis). For me, a TSH of 3.92 is too high. I know that this level is within the supposed 'normal limits', but the commonly accepted normal limits are just plain wrong. At that level, I am lethargic and have other symptoms. I feel better when my TSH is significantly under 2.0. Around the 1.5 range seems to be pretty good for me; although, my doctor has never let me try pushing it lower so who knows if I would feel even better, if it were a bit lower.

Unfortunately, I found it very challenging to get a proper diagnosis and to discern the best dosage of medication. In part, because my symptoms and needs seem to change over time. If you have a normal functioning thyroid your body naturally adjusts your thyroid hormone levels. If you have sick thyroid or no thyroid such as in your case, the only adjustments that can be made are a dosage change and/or a medication change. I've tried to get my GP (and an endocrinologist that she sent me to) to let me try a natural thyroid medication because so many people report success with the natural hormones, but I have been unsuccessful.

In terms of the effect of thyroid disease on my weight, I seem to have had a different experience than some other people. I gained weight when I was hyper. My appetite was huge and my stress level was out of control so I was also stress eating. When I've been hypo, I do think I burn fewer calories because I'm lethargic and thus, less active. However, I'm also not very hungry so my body seems to counterbalance the slower metabolism with lower food consumption.

I wish you success in addressing your continued thyroid challenges and achieving your weight loss goals. Unfortunately, this group used to be quite active, but it has been pretty dead for quite some time so you may not get many responses to your post.

Fuzzipeg

Hi, I'm desperately sorry to read of your new issues. I agree with bametels, your tsh is way too high. Its possible your t4 is low but I have no training, learned from mine and others observations.

Are you able to return to the hospital where you underwent our treatment? I realise it was many years ago and you managed for a very long time. I think/hope you are probably in the US, there are a couple of sites which have lists of doctors who have helped those with unresolved thyroid numbers in the past. Your situation is different to most.

The first site "Hypothyroidmom", putting that into a search engine should bring it up and navigate the system to the list of doctors. I don't know if you have heard of, Stop the Thyroid Madness, it sometimes goes by the initials, it is also in book form and was updated a couple or so years ago, this also has a list of helpful medics, likewise, search engine and navagate. Alternatively, you could seek out a functional practitioner, they use the same blood tests as main stream but delve into the reasons why, I know you are lacking your thyroid, they will go to what you need to balance you in a much better way.

I really hope some of this helps, often it can feel as if you are being fobbed of by people who really should know better.

CSARdiver

Welcome aboard!

For anyone with a thyroidectomy the ideal range of TSH is 0.2-2.0.

You should take your meds first thing in the morning - I set an alarm and take Synthroid with water at 5 am. I drink coffee around 8 am and a light breakfast around 10 am.

The primary driver in this is CICO - thyroid has almost no detectable impact on metabolism. It may impact your rate of recovery in extreme endurance events and it may impact your appetite, but not hunger.

Knowing this helps you focus on what you have control over, with is your caloric intake and output - which happily for you are really the only things that matter in weight management.

I had a total thyroidectomy in 2000 due to thyroid cancer. I bought into much of the bad information out there and ended up putting on ~70 lbs over the next 14 years. None of this was due to my thyroid, but everything to do with my transitioning from a high active military career to a cushy life in academia. I started MFP in 2014 and lost 60 lbs the first year gradually decreasing my intake and increasing my activity.

blinx7

Thanks for writing everyone.

I have a visit to an endocrinologist scheduled (first, a nurse practitioner on Friday and then the actual endocrinologist in late September) so we will see.

I didn't fully explain in my first post, but I have been dealing with fatigue issues for a long time. For a while I thought it was just that I had an intense job (transactional lawyer at a large law firm) but I've since left that job and while my life is way better, I still find that I need lots of sleep (I can't really function on less than 8 and probably would prefer more), find myself regularly exhausted after a normal day (e.g., gym, then 8-9 hours of work, kid bedtime) and needing to rest more on weekends rather than go out or go on trips. I used to think I was just lazy so I suppose I never really looked into it or connected the dots, but it doesn't make sense because I have achieved a lot in my career and family but it's more that I do it with a feeling that I am constantly pushing against fatigue in a way my friends aren't... and it's very visible on trips (where just the travel tires me out so I need to rest after we reach our destination) or when friends want to have late nights and I just can't.

I also eat a pretty healthy diet and still struggle to lose weight. (I'm not high overweight, but it's more that I can't shake what I've gained despite pretty intense effort.) I estimate that MFP / Fitbit are overestimating my BMR + calorie burn by 500-750 calories a day. This also hasn't been readily apparent for years because I am tall (6'2, 205) so I pretty much just eat the same as people much smaller (like my wife) and so it seems "normal" but now that I am tracking and logging closely I see that things are not matching up. If I I set MFP to "lose one pound a week" and followed it carefully, I am pretty sure I would actually gain weight.

I'm going to check out those websites. I don't want to be overly alarmist but do want to make sure I'm doing a better job at managing my condition, and I realized now I can't just rely on a GP to tell me how I feel. I think that from the view of a GP there's the 2% of people that are really sick and then the 98% of people that are lumped in "not sick," and so if something is wrong but you're lumped in the not sick you need to manage it yourself and push for better treatment.

Fuzzipeg

Wishing you all the very best for your appointments. Each and every one of us has a different experience of being hypo while sharing such similar overlapping symptoms. Most of us have experienced the need to change or down size our employment with all that brings. There is nothing alarmist about wanting your health back and wanting to do it in the right way for you. At the end of the day, no one else matters in your world more than you and your health to experience everything as you know you should.

I was talking with a neighbour yesterday who said how good our NHS is. I said as long as you do not have a thyroid problem, he replied he has! He was still not feeling right and has no idea if he has autoimmunity. I tried to explain all the potential convolutions which can descend on one and how every endocrine gland has the potential to impact on the thyroid. I name dropped my Nutritionist, surprisingly she had been mentioned by someone else. My hope is, he will see her. Like you he has the, "I'm not me" feeling, lacking quality sleep. My deepest hope is, no one will ever have to settle for second best. If at first you don't succeed, keep going. Find a doctor who listens and uses the full blood panel effectively. If necessary, do searches, there are fully qualified doctors out there who have on line presences who really try to help, with information for those who can't get to their practices, one is on the west coast and has experienced much ill health for himself. You will not be unused to due diligence.

Years ago I had the pleasure of hearing an interview with the person who designed the blood tests we are all subjected to. He said, the way they are used now is so far away from they were intended and no one should settle for not feeling right. All the very best.