Im a 41 year old male 6'3" tall. TT from cancer in Oct 2015 at about 35 years old. Ever since I have not been right. I have gained weight ever since. From 18-35 i bounced between 200-220.. which was all diet related. I could easily lay off of junk and walk and lose the weight back to normal even dipping below 200. I am now 270lbs. I was on 175 levo and 25 liothyronine. I felt crappy but did strict keto and was able to lose weight down to 247. My endo said my levels were too high and took my liothyronine down to 5 per day and my weight shot back up to high 260's. She then adjusted to liothyronine 15 per day and i have kind of flattened out as far as gaining. Either way I am really stiff. I cant touch my toes (not even close) and its hardnto pit shoes on etc. I hurt! Even when my wife will massage my calves she doesnit lightly cuz of the pain. Im sore all the time. I feel like everyday when i wakeup that i worked out hard for the first time in years. It doesn't matter if i was active or i just sat around all day. Its always the same.
I talked to my endo todayvand she basically said she rarely goes over 10 lio per day and that all she can do is level out my tsh from an academic standpoint and that i can choose to believe the forums or not or get a second opinion but i know how that will go. This is my fourth endo and its always the same. She said she can adjust my levels and thats it. Other than that she wonders why i think its related to my TT cuz she sees so many with no problem! She also will not do a FULL thyroid panel. She says testing for reverse T3 etc is pointless!!!
I checked my testosterone before my TT and was 800. Needless to say its now dropped to around 200 and am on therapy for that. I also have sleep apnea and fatty liver now. Guess why? Probably cause ive gained the weight? I know thyroid controls sex hormones, metabolism, and weight. All of my issues stem from the removal. I also have high cholesterol now too which i hadnt before!
I eat better that i ever did before. I used to drink a lot of beer and fast food in my early 30s and thats all gone now andnI feel worse than ever.
Does anyone have anybodea or help?
Thank you sooo much!
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For levothyroxine or T3 to work well we need OPTIMAL vitamin levels
What vitamin supplements are you currently taking
When were vitamin D, folate, ferritin and B12 last tested
Please add most recent thyroid results and ranges
Always test thyroid levels early morning, ideally before 9am and last dose levothyroxine 24 hours before test
Do you normally split T3 into 3 x 5mcg
Day before test, even if don’t normally split, you should take T3 as 3 smaller doses spread through the day and last 5mcg dose approx 8-12 hours before test
She just did the test this morning. TSH, T4, T3, Vit D. I dont split the dose but it did go in fasting and hadnt had either med in 24 hrs. I will keep you posted.
Im not sure what to do. Its obvious when she lowered the t3 prescription my weight went soaring back up and overall well being declined. It seems as though the t3 by itself affects me more?
T4 (levo) is an inactive hormone. T3(liothyronine) is the 'active' hormone and I don't know why Endos or any doctor is reluctant to prescribe T3 except I am aware that it is the cost the NHS pays for T3. We have millions of T3 receptor cells in our bodies and all need T3.
How is it that T3 can be bought abroad for a fraction of what is paid in UK. I think the NHS is being ripped off by the suppliers of T3.
It's not just T3. I had an interesting conversation with my dentist last week. Her husband has an heriditary heart condition. The NHS won't prescribe a medicine that helps him better due to high cost. They go on holiday to another country 3 times a year and get it instead.
She said she'd love to go to a different holiday location sometime.
In life, many of us have to take an action we might not have had to consider in the past.
With regard to having improved health, we have to have options and not restricted, i.e. NDTs (natural dessicated thyroid hormones that saved lives from 1892 onwards have been withdrawn by the NHS (as far as I know) I'm not sure if you can get these privately. Each tablet contains all of the hormones a healthy thyroid gland would do.
I tried armor thyroid one time only for a month and I didn't feel right. The doctor was reluctant to give it to me so who knows if the dose was correct? I don't think I gave it a fair shot? The only reason he gave it to me is I went into his office and I told him if he doesn't give it to me that I was going to go to Mexico and buy it myself. And that was years ago and I really was going to do it because I'm in the same predicament that I still am in now I feel like crap all the time. I really don't understand why the doctors don't want to help you and don't want to prescribe a medication that will work. It's not like I'm in the office begging to get prescriptions that you can get high from. I'm not trying to get opiates or Xanax or anything. I just want to live a normal life and they're very reluctant to talk to you to help and they dismiss your problems as foolish. And they take offense to you questioning them.
I think that doctors have to follow the 'guidance laid down for them' so the fault is from the 'top of the tree' to the roots and unfortunately we don't get doctors who are knowledgeable. I think they just read a couple of pages - unless they or a member of their family has a dysfunctional thyroid gland.
One response from a GP to me was "your TSH is too low - your T3 is too high and your T4 is too low',
My response - 'Yes doctor that is because I take T3 alone. I don't take T4 (levo) so it will be low and T3 high.
GP - "but T3 converts to T4 - "No doctor that's not right - it is T4 that it supposed to convert to T3".
That's what my dad says. Basically the government runs our health care system and dictates what the doctors can do. I think the new endo I have does have an idea but they just don't understand. Unless you've lived through this. You really don't know what it's like. If I hadn't experienced this and I looked at somebody that was complaining all the time, I personally would think that they are nuts myself.
As soon as a medical professional who now knows we are taking thyroid hormone replacements, think the 'job is done' without them having a clue exactly what TSH or Free T4 and Free T3 ranges actually mean and rarely test the 'frees' Neither do they ensure that our vitamins/minerals are optimum too.
It takes a lot longer than a month to be optimally medicated on NDT - in fact no thyroid hormones work effectively until your vitamins and minerals are up and maintained at optimal levels.
A fully functioning working thyroid would be supporting you daily with trace elements of T1. T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg.
T4 is inert and needs to be converted by your body into T3 the active hormone that runs the body and it is said that T3 is around 4 times more powerful than T4 :
Personally speaking, and without a thyroid, I find NDT the better option for me :
Natural Desiccated Thyroid is derived from pig thyroid dried and ground down into tablets referred to as grains and contain all the same known hormones as that of the human gland and successfully used for over 100 years prior to Big Pharma launching their own T3 and T4 medications on the back of NDT and then systematically penetrating the market to their own ends.
That's awful, and I'm sure, like the people on here who need T3 to live any kind of life, the stress and anxiety of not having easy access to the required meds does nothing for his heart condition! Yet a fortune is spent on people to 'manage' the system, and billions are written off due to the items being completely useless. Funny old world.
No thyroid hormone replacement works well until your core strength vitamins and minerals, ferritin, folate, B12 and vitamin D are up and maintained at optimal levels.
A fully functioning working thyroid would be supporting you daily with trace elements of T1. T2 and calcitonin plus a measure of T3 at around 10 mcg plus a measure of T4 at around 100 mcg.
Some people can get by on T4 only :
Some people need to add a little T3 to their T4 to more represent what their gland would have been producing :
Some people can't tolerate T4 and need to take T3 only :
Some prefer Natural Desiccated Thyroid which contains all the same known hormones as that of the human gland.
T4 is inert and needs to be converted by your body into T3 the active hormone that runs the body. T3 is said to be around 4 times more powerful than T4 and it is imperative that you are dosed on your T3 and T4 blood test levels and not a TSH.
Conversion can be compromised by low vitamins and minerals as detailed above, inflammation, any physiological stress ( emotional or physical ) dieting, depression and ageing - so is there anything there, or another health issue to consider.
The thyroid is a major gland and likened to the body's engine, and yes, the symptoms of hypothyroidism can be debilitating and life changing.
In order to help you further we do need to see current blood test results for TSH, T3, T4, antibodies, inflammation, and the vitamins and minerals as above.
I too haven't a thyroid - Graves and RAI thyroid ablation in 2005 and am now doing well on NDT - I understand it is more easily available in the States - have you also tried this treatment option ?
I had a thyroidectomy and RAI in 2004 due to thyroid cancer. I'm currently on three grains or 180 mg of Armour Thyroid NDT.
I weigh 130 pounds & 21% body fat. I'm able to run 2-3 miles seven days a week which is important to me as I have been a runner all of my life. I've made some substantial improvements in my nutrition inc. the biggest change of increasing fruits & vegetables. I had been pre-diabetic for most of my adult life and my most recent glucose labs were 95 mg/dL down from 104 mg/dL. I take Thorne vitamin D/K2, Thorne B-Complex #12, Thorne Iron Bisglycinate, Nordic Naturals Omega Algae & Pure Encapsulations Magnesium Glycinate.
My biggest obstacle to success was finding a doctor who understood which thyroid labs to order and how to interpret them, as well as, finding a doctor who was willing to prescribe NDT. I'm currently seeing a doctor in the U.S. who I see in person once a year and telemedicine as needed.
A methodical approach of tracking thyroid hormone dosing, thyroid and vitamin/mineral labs, supplements & nutrition using spreadsheets was helpful.
I wanted to offer some encouragement and say that it is possible to feel good post thyroidectomy. The first-hand people-to-people experience shared on this forum was critical to my success.
Where is your doctor?Im in Nashville TN. If I only have to see them once a year and can do telehealth, I could pretty much go anywhere in the United States. It's worth it. I did have an endo a few years back prescribed me armor after I begged him for it and told him I was going to go to Mexico to get it myself it didn't improve me but I have a feeling that's because of the dosage. At the end of last year I was on tyrosint 175 and Liothyrn in 25. The new endo did levothyroxine not tyrosint
Can you message me your doctors info also? My current Endo won’t mess with Armour or NP Thyroid as I want to try to switch to those as well! I had RAI in 2020 and haven’t been the same since! Thanks!
Hi. Getting towards optimal b12 and iron has made a huge difference to my muscles. I have practised yoga for many years and over the last 5 years I knew I was steadily getting worse despite practising daily. Finding this forum and improving my vitamins is making a huge difference. All the best!
Not much I can add to all the other excellent answers you've had about nutrients etc. But, I would just like to say not to worry about your cholesterol.
High cholesterol is a hypo symptom. It has next to nothing to do with your diet. Cholesterol is made in the liver, and the liver tries to keep the level constant. So, the more cholesterol you ingest, the less it will make, and the less you ingest, the more it will make.
However, when T3 is low, the body cannot process and excrete cholesterol correctly, and it tends to build up in the blood. So, whatever your doctor thinks about your FT3, that high cholesterol level is saying that T3 is too low for you. Not many doctors know that. And very few doctors ever treat us as individuals. And, when it comes to thyroid hormone replacement, they think we should all react the same to the same treatment. We don't. Nor do we behave the same as euthyroid people (people with no thyroid problems) so just trying to restor our levels to euthyroid levels isn't going to work. Because we are hypo we need higher levels of T3 to be well. So, she may think she's being clever not prescribing more than 10 mcg, but a lot of us need more than that. She's really not as knowledgeable as she thinks she is!
Having said that, she is right about testing for rT3 being pointless. It's a very expensive test, takes a long time, and doesn't give you any more information than you can get from just testing FT4 and FT3. But, testing FT3 is absolutely essential.
I never had cholesterol problem, testosterone problem, fatty liver, sleep apnea before the TT. Actually i NEVER had any issue other than broken bones. I was healthy until this hit me out of nowhere and nobody knows why?
She had the nerve to ask me why i thought it was thyroid related and not something else! All my symptoms are hypo. But they always have me somewhat in range so "my levels are good" the doctors have no clue what they are doing nor how bad we feel. She told me everyone is gaining weight its a society problem, lol! When she dropped my T3 dose back in Dec 2021 my weight shot up 20 lbs in a month. Thats when it clicked that the T3 is very important and made me start my own research and find this forum. Before she did this I had a steady slow weight gain since they did the thyroidctomy . Honestly, I still blame the thyroid because of the way I felt, but I really couldn't say for sure if it was not age-related or some other condition . When she drastically changed the T3 dose it clicked it was the straw that broke the camel's back. I now know that my intuition was right and the things I read from the people on the forums is 100% correct. Now im on a mission and have hope again. I thought my life was over. I look fine to most but i feel like im 80+ years old. I can hardly get around without pain, complaining. I hurt all the time. Im miserable to the point where its like people dont believe me! And the weight gain bothers me. Its not the look or the fact my entire wardrobe has gone down to just sitting in my closet. I buy XXLT shirts and wear basketball shorts and thats it! I have learned to accept my new size, although I'm happy with it, it's not the biggest problem . whats the worst part is the way my gut feels. It feels like a heavy overstuffed ball. Its uncomfortable and it even feels slow ( I don't know how to explain it) when I go out to eat with my wife we will both eat a similar meal and then just hours later she's telling me that she's already hungry again and wants to eat something and I still feel the same as after the meal I'm stuffed! She's a foot shorter than me in a hundred pounds lighter and can burn right through her food.
I was healthy until this hit me out of nowhere and nobody knows why?
I'm sorry, nobody knows why what? Why you have hypo symptoms when you're hypo? The must be dafter than I gave them credit for! If you remove someone's thyroid and don't adequately replace the missing hormones, of course they're going to be hypo and have symptoms. That is so obvious I wouldn't have thought it necessary to say it.
And, high cholesterol, fatty liver, sleep apnea, etc. are all hypo symptoms.
whats the worst part is the way my gut feels. It feels like a heavy overstuffed ball. Its uncomfortable and it even feels slow ( I don't know how to explain it)
You don't have to explain it, I know what you mean. I expect your stomach acid is low - it usually is when you're hypo. Have a read of this article and try the home test at the end:
When your stomach acid is low, it's difficult to digest food properly, and it just sits there, in the pit of the stomach, and ferments, causing gas. It feels slow because it is slow!
Yesterday's test results...
3/21/22 TSH - 9.46
3/21/22 FT4 - 0.8
Good lord! You are very, very under-medicated! You haven't put the range for the FT4, so I don't know how low that is. But, just looking at your TSH tells me you need an increase in dose ASAP. Why did the silly woman not test FT3? That's essential when you're taking T3.
Without the FT3 test, it's difficult to say exactly what is wrong. Several possibilities:
a) you're not absorbing the hormone correctly. How do you take it? All in one go, or split throughout the day?
Do you always take it on an empty stomach, one hour before food or two hours after?
Do you take any other supplements/medication at the same time as your hormone?
b) your FT3 is ok, it's just the FT4 that is low, in which case you would need to increase the levo.
c) both FT4 and FT3 are low and both need increasing.
d) neither are exactly low, but there was error in the TSH testing - it happens!
Nobody knows how I got thyroid cancer in the first place. It is the only medical condition I ever had other than my appendix 15 years prior. Ever since they removed the thyroid, I've had nothing but problems. The only good part is I can clearly see that they're all related to my thyroid medication and being hypo. I'm going to read the article you posted after I respond, but you hit the nail on the head when you said that it causes gas. My gas has been worse than ever. It's unreal. I take my medication perfectly right when I wake up with water. I always took both medications in the morning. But now I'm going to start splitting the dose in thirds with my T3. I have saved up extra bottles and I'm going to try and outsource my own T3 and up my dosage. Supposedly the doctor tested for T3 but the only results I got back so far were the TSH and the T4. I asked the lady and saw the paper when they drew the blood and I did see that the T3 and vitamin d were being checked. I just haven't gotten those results on my portal yet.
Well, it's difficult for anybody to know how they got cancer, wherever it appears. Could be all sorts of causes.
As to splitting the dose, that is the right thing to do for some people, but not everybody. In your place, I would split it in two to begin with, see if that improves things. Because splitting into three can get complicated making it difficult to fit in meals, other medication and supplements.
It's possible that the lab didn't test the T3 and Vit D, because - unfortunately - they have the last word on what it tested. Rediculous as that may seem! And they often deem it 'unnecessary' to test FT3.
In the United States, I don't think the labs have the discretion to "not test ". They test what the doctor orders. In a private for-profit health care system, there is no motivation to keep costs down or save money unless you are an HMO.
Two hours after lunch would be a good place to start, yes. But, it's going to be the usual trial and error to find the best times for you. You might be someone who finds it best to take it later - bedtime for example. But, there are so many variables it's impossible for anyone to tell you when is the best time to take it. You really have to find that for yourself, I'm afraid.
I can totally relate. I was as healthy as a horse until I was blindsided by thyroid cancer. I qualified for the Boston Marathon at the St George Marathon the year before I had the thyroidectomy due to thyroid cancer.
I was not on that level but i snowboard and wakeboard all the time. I rarely do either anymore and its rough even playing with my son. It sucks to say the least.
I truly feel your pain. It is what I have been going through.
I bumped into a friend on Monday, I almost didn't recognise her as she's lost a fair bit of weight. I was walking like a snail to the bus stop, pacing myself.
She had just come back from a jog around the park. I complimented her and she told me she has a personal trainer she sees weekly and said she's also been going for long walks and the occasional gym. She looked lovely and toned.
We're exactly the same age, I'm literally 4 months or so older, except she's thriving in her mid 40's and I feel decades older. Even though I'm taking ndt I still cannot exercise at all without suffering badly later. I felt an awful, pretty nasty feeling of jealousy and resentment rising in me and I tried to hold back the tears as she was talking. I used to be that person exercising regularly. I love exercise and keeping fit and now I can't do it and it is killing me watching my body go and I'm putting on weight and nothing in my wardrobe fits me anymore.
I can't remember the last time I brought clothes for myself. Somehow it feels like giving in to admit I'm now nearly 3 sizes bigger than I used to be and buying the clothes
Yesterday I had to go to the doctors because of long covid symptoms and I got an instant referral to long covid clinic. Amazing. Years of begging for an endo appointment and complaining of fatigue and I cant get so much as an assessment. But long covid no problem.
Magnesium really helps my muscle stiffness. Plus getting my T3 high in range hugely helped. I need mine around 6. You can self source extra T3 fairly easily and just add it to what you get given and never tell the Endo. I can’t get by on less than 20-25 and take it all in one go, as some recommend on here, to flood the receptors. Don’t quote me in the science on that but it works much better for me than taking it spread across the day. I also need to keep taking folate to keep that from going low (then my thyroid levels also go lower). Hope that helps.
Will it show up on the labs? I don't want her to lower my T4 do I? And I did self-source my own T3 from excess prescriptions that are still current. I also found it very cheap online from other countries in case that this does benefit me. I took my first dose yesterday. Maybe somebody can help but I did 10:00 in the morning 12.5 in the afternoon and 12.5 before bed for a total of 35. The reason I did this was it's supposed to be a four to one ratio. Therefore, 20% of my 175 levo prescription would be 35 T3. Any thoughts or advice?Thank you
I’d say that’s quite a large amount to take to start off with. People tend to go up gradually. Also I can’t see your T3 result above. You really need to know where it was to see progress. Weren’t you on 15? I’d have tried 20 for a week, then 25 and stick there for six weeks then retested.
I was on 25 until January 2022 when she dropped me to 5!!! Thats when the weight flew up and problems worsened sending me into panic and doing my own research. After one month she bumped me back to 15 but not to 25!?!?!? This is a new endo because we moved to Tennessee and had to change. I really don't think she has a clue. Any idiot can go by a book and check a level but to really know what to do and why and for that matter care about the few that struggle, thats where our problem lies. Just based off common sense. I don't know why anybody would drop me from 25 down to five??? The reason I'm trying 35 is because I know I was already at 25 before and I still didn't feel right. To me it seem like I need more than 25 but at least at 25. It was just a slow gradual weight gain over years, not instant. The problems were still bad at 25 but not nowhere near as extreme when she lowered the dose.
But in all fairness I have no idea what I'm doing. I just know how I feel and I'm sick and tired of the doctor telling me that my level is fine and they have never checked T3 in the last 6 and 1/2 years of dealing with this. Not one time has any of the four different endocrinologists I've had ever checked it!
Could it be possible that I need to increase my T4 and keep my T3 at around 20 or 25? I have no idea. I do know however that I have the ability now to get more T3 so I can give it a shot. I don't have any T4 and can't up my dose even though the doctor is going to now all of the sudden.
Okay, I’m with you. Go for it. I’ve done so much experimentation! I really would test your T3 privately (it’s not a fortune in the U.K., I’ve no idea about the US) just so you know where you were in range and so you can tell if the lio actually raises your T3. I think I might try adding 5 per day for a week then go to 35. That said, some people have trouble getting used to tiny amounts and others can take large amounts with no problem
I'm very concerned for you! You're obviously really suffering, although you sound like you're very tough. I relate to you personally, because I have a son who's 6'5" and weighs as much or more than you do. I don't know how much of it is related to thyroid. He's on medications that precipitated the weight gain. So I've done a lot of research on what pharmaceuticals do to your digestive system. We can't use our food to nourish ourself, or make the vitamins that the body synthesizes when the gut flora and fauna is destroyed by medications and their effects. I suggest you take a look at the "heal your gut cookbook. " Honest introduction page of the website, it mentions the diet as a protocol for improving thyroid issues.healyourgutcookbook.com/wha...
There's an on-ramp to the diet that helps you reestablish the good flora and fauna in your gut, that is, the healthy bacteria and other little guys that you need. Taking probiotics does not do it. You have to clean out the competing bacterias. You basically have to heal the gut, then repopulate it. It's pretty straightforward. And the good news is, it's delicious. (But you have to be prepared for the fact that the undesirable, harmful bacteria shout really loudly when you want to stop eating white flour and sugar! One tip in the cookbook I link to is that you can have a small spoonful of honey when you start to freak out. But if you persist, the rewards will be amazing, combined with the pharmaceutical changes you hope to make.
"In addition to the basic allowed foods, the fundamentals of the GAPS diet is that you drink stock or broth with every meal and have high quality fermented foods each day as well." "amodernhomestead.com/beginn...
I'm sorry you had thyroid cancer to cope with as well as awful symptoms.
As the majority of people who develop a dysfunctional thyroid gland are female the link below has some men's pictures who had gained weight with levothyroxine and one who gained weight and the following link is his story:-
I know this has made it more difficult. I was young. I was 35 and I'm a male and everywhere I scour the internet for advice and information. It's mostly older women and it constantly talks about their menstrual cycles and different things like that that have nothing to do with me, so it has been more challenging to find pertinent information. I don't know if it's a fluke, but my first day of administering my own T3 that I got myself. I feel quite a bit better. The muscle pain and all that is virtually gone. I will know for sure as time progresses and it's not just a fluke that I'm having a good day or a placebo effect but I am hopeful!
For me T3 was a miracle as it immediately relieved all of my awful symptoms.
I hope you also find solace and symptom-free from your dose.
You may like to look at an historical website and it was by a Dr John Lowe (you may alread be aware of him). He had a bad fall that gave him a brain bleed that couldn't be fixed and he worked everyday in his bed until he died. He was an Adviser to TUK/
Due to being pursued by the USA 'authorities' for not toeing the line of prescribing levothyroxine for those who had a dysfunctional thyroid gland he resigned his licence so that he could go on advising people who were hypothyroidism or 'resistance' to thyroid hormones.
I take one daily dose of T3 when I awake with one glass of water.
I have no clinical symptoms and feel well. Some people split their dose but Dr L recommended once daily as it saturates all of our millions of T3 receptor cell and they, in turn, send out waves throughout the day.
and one dose can have an effect for three days. The brain and heart have the most T3 receptor cells.
I trialled this myself - took my a.m. dose with a glass of water - took none on day 2 or day 3 and 'yes' my one dose lasted at least three days and I had no clinical symptoms.
I am not on other 'daily' meds but I have a monthly B12 injection for Pernicious Anaemia. I used to get it quarterly but GP said I can have as many as I want.
My mother also had P.A. but unfortunately her GP told her she needed no more B12 injections as her 'bloods were fine'. That decision by the doctor caused my mother to develop stomach cancer and insuffient pain relief towards the end of her life..
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Stiff shoulder and neck pain
NDT reduction muscle and neck stiffness back. 
From Levothyroxine to Thiroyd NDT and having burning muscle pains :(
Stiff, painful swollen hands and feet
