T3 and weight gain?: I was diagnosed hypothyroid... - Thyroid UK

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T3 and weight gain?

stig5882 profile image
86 Replies

I was diagnosed hypothyroid a week ago but doctor won't medicate yet as she said my TSH level was not high enough TSH was 5.2 (0.27 - 4.20) T4 was 10.9 (12.0 - 22.0) so when I asked about my breathlessness she sent me for a lung test which was clear. Apart from on going 6 weekly tests that was it :/ I have been self medicating with T3 the past week, half a TIROMEL twice daily for 3 days and then 25gm morning then half tablet at 5pm and just noticed today that the breathlessness has stopped :) but I have put 4lbs weight on. :( I have been watching my calorie intake and I confess I have been over 1500 calories most days but not enough to warrent such a weight increase. Any information appreciated.

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stig5882
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86 Replies

Hello Stig,

Welcome to our forum and sorry to hear that you are not feeling well

Your TSH is too high ... It's out of range. Your T4 is too low .... under range.

You are clearly hypothyroid and your GP is wrong to deny you medication.

According to their guidelines... many doctors won't prescribe thyroid hormone replacement .. (generally T4) ..until TSH reaches >10 by which time many patients are extremely ill.... and huge amounts of money and resources are wasted as patients are sent for unneccessary lung tests, ECG's, cystoscopies, etc, etc......

Your breathlessness is a classic symtom of too low thyroid hormone and one that I have experienced myself.

You are brave self medicating and it's great to hear the breathlessness has stopped.

The correct balance of thyroid hormone is a very small range for most of us. If you have too much or too little you will become symptomatic again. Too much is scary as it might induce great heat, heart palps, anxiety, restlessness, panic attacks, etc.

T3 is usually introduced low and slow on a dose determined by blood test results. GP's generally aren't allowed to request T3 blood tests but it is available privately on the link below.

I have no idea why you should gain weigh as most ..(.. Including myself ... ) naturally lose weight when starting T3...could this be an indication of the wrong dose...?..

You should also ask your GP to test you for thyroid antibodies TPOAb & TGAb which would determine Hashimotos, .. prevalent in people who suffer thyroid issues. If you have this, many doctors prescribe hormone replacement with symptoms and a TSH of > 5.0 ... .. you would fit into this category, although may well be only offered T4.

You could also request a referral to an endo ... whether he would be supportive of you self medicating T3 would remain to be seen..(some are..!) but at least you should have ALL thyroid hormones blood tested.. ! !

People with hypothyroidism often suffer malabsorption and then nutrient deficiencies. Ask your doctor to test Vit B12, Vit D, folate and ferritin as thyroid hormones depend on optimal levels of these to synthesis properly.

Your present daily dose is 37.5mcg... Perhaps others users of .. "T3 only " will offer their experience....?

Flower

LKA-dot profile image
LKA-dot in reply to

Hi Flower,

Please could you explain about the hormone replacement? I have anitbodies and my GP says they just treat it all together? thx Karin

in reply toLKA-dot

Hello LKA-dot.

Doctors do not understand the impact on the health or management of a high antibody count.

They prescribe Levothyroxine and expect it to fix everything.

Low thyroid hormone can exacerbate Hashimotos symptoms and vice versa but it is important to treat each separately.

Many have found a gluten free diet beneficial to lower antibodies and reduce inflammation and I also supplement theraputic doses of curcumin.

Low thyroid hormone needs replacement medication and your previous post advises you are adding T3 to your T4. I have recently done this with very positive results.

I also supplement selenium known to help with T4 to T3 conversion. It is important to keep T3 levels in line with T4 as this is the biological hormone that will bring about horrid symptoms if left behind.

Is this what you meant when you asked about "hormone replacement" Karin?

Flower

Link explaining selenium

thyroiduk.org.uk/tuk/treatm...

Link detailing curcumin

ncbi.nlm.nih.gov/pubmed/126...

LKA-dot profile image
LKA-dot in reply to

Thx Flower, guess I thought there was something I had missed part from levo, T3 and NDI - seems I misunderstood the sentence in your post.... but I will look into curcumin. Karin

stig5882 profile image
stig5882 in reply to

Thank you so much for your help. Greatly appreciated. x

stig5882 profile image
stig5882 in reply to

Flower007 the other test results are as follows:

serum ferritin..........122ug/L (13 - 150 )

B12/folate level.........serum vitamin B12 455pg/mL ( 180 - 914 )

serum Folate 11.2 ng/mL ( 3.1 - 20.0 )

Serun 25 - HO vit D3 level 107 nmol/L

<30 nmol/L: severe vitamin D deficiency

30 - 70 nmol/L: borderline insufficiency.

70 -200 nmol/L : replete

>250 nmol/L possible vitamin D toxicity if sustained.

and my latest serum T4 level 11.5 pmol/L (12.0 - 22.0)

serum TSH level 4.9 mn/L (0.27 - 4.20 )

Doctor still refuses to medicate and just says retest for TSH in 6 weeks....:/

in reply tostig5882

Stig,

Ferritin - is fine as optimal is half way through range.

B12 - minimum 500 pg/ml is suggested now. PA society suggests 1000 pg/ml so you need to supplement.

Folate -minimum top half of range so you need to supplement as works with B12.

Vit D- good.

For supplement types and amounts please ask in a new post. I don't supplement these so can not advise.

Are you getting thyroid hormones blood tests first thing in the morning whilst fasting ?..?......this will ensure TSH is at its highest.

Flower

stig5882 profile image
stig5882 in reply to

Many thanks Flower, yes I had tests done early morning after all night fast (water only). I will ask about supplementing with B12 & Folate. :) xxxx

fundu123 profile image
fundu123 in reply tostig5882

are you still on tiromel ? Is this "tsh" reported while you are on tiromel ?

greygoose profile image
greygoose

Stig, I know you're not going to believe this, but it's true : you're not eating enough! 1500 calories is too low for a hypo. Hypos can diet themselves fat! Taking the T3 is waking up parts of you that have been dormant for - probably - quite a while. They are all going to need calories to function.

Besides, you shouldn't be counting calories - that's a recipe for disaster - you should be counting nutrients. Hypos very often have nutritional deficiencies - for various reasons - and nutritional deficiencies make you put on weight. You should get them tested, as Flower says. But, if you start cutting down on your food intake, you are going to be even more deficient.

People on low calorie diets, very often cut out fats - which have the highest number of calories. But that's the worst thing you could do. Eating fat doesn't make you fat - which just goes to show how stupid counting calories is. Just make sure you eat plenty of protein, good fats - olive oïl, animal fat, butter, nuts, avacados, coconut oïl - fresh fruit and veg - but not too much fibre because that affects absorption of hormone. The things to avoid are sugar, soy and processed foods. Apart from that, enjoy!

And, quite apart from all that, I doubt that the weight gain is from fat. It's far more likely to be water weight, and restricting your calories isn't going to do a thing about that. All you can do about that is optimise your FT3. :)

rsae56 profile image
rsae56 in reply togreygoose

I so agree with greygoose! LCHF (low carb high fat), has been my rescue in fighting overweight. You can get wonderful insight at dietdoctor.com

greygoose profile image
greygoose in reply torsae56

Well, not too low carb. Hypos need their carbs. And, to be honest, I Don't really approve of obsessing with diet to the point of following a diet-plan like that. You know the old saying 'a little of what you fancy does you good'? I would even extend that to sugar from time to time. The only real no-nos, as far as I'm concerned, are soy and chemical-laden processed foods.

healthunlocked.com/thyroidu...

rsae56 profile image
rsae56 in reply togreygoose

Greygoose, It all depends on your tolerance of carb/sugar, how insulin/leptin resistant we are. Some can tolerate a certain amount of carbs others put on weight just looking on carbs!

There is no evidence that 'hypos need their carbs'. I wonder where you learned that?

At dietdoctor.com you can read about some that could reduce their thyroid medication on lchf and even stop it and still maintaining good blod values. Others just keep their meds unchanged.

lchf should not be a diet but a lifestyle to obtain the marvelous health benefits.

I so agree with you about soy and chemical laden processed food!

rsae56 profile image
rsae56 in reply torsae56

Paleo and lchf is not the same btw.

greygoose profile image
greygoose in reply torsae56

I've read it several places. Where did you learn that there's no evidence for it? I've even read that there's a school of thought that thinks hypothyroidism could be caused by low carbs.

But I wasn't talking about just putting on weight/fat, I was talking about hypo weight. And that has nothing to do with what you eat.

stig5882 profile image
stig5882 in reply togreygoose

what is hypo weight then?.... all this is so overwhelming... :(

greygoose profile image
greygoose in reply tostig5882

It's the weight you put on when you're hypo due to having a low metabolism. And it's not even always fat. It can be a substance called mucin that we hypos develope. It collects Under the skin and retains water.

youtube.com/watch?v=oI9yurd...

Spareribs profile image
Spareribs in reply togreygoose

love that video x

gabkad profile image
gabkad in reply togreygoose

Goosey, is this permanent? I thought i would go away.

greygoose profile image
greygoose in reply togabkad

Well, I Don't know. For myself, although everything is greatly reduced in size, so the water must have gone, I still can't pinch up my skin - not anywhere on my body except the backs of my hands. So, it rather looks like the mucin's still there, even if it isn't gorged with water. How long it will stay there, I Don't know. But I have been hypo and un/Under-treated for a very long time, so I'm not a typical case, I admit.

rsae56 profile image
rsae56 in reply togreygoose

I couldn't open the video 😥

greygoose profile image
greygoose in reply torsae56

youtube.com/watch?t=14&v=oI...

Copy and paste into your browser and it should work.

Angel_of_the_North profile image
Angel_of_the_North in reply togreygoose

Several studies show that people eating very few carbs have lower T3

rsae56 profile image
rsae56 in reply togreygoose

I could imagine that low carb together with low fat can cause low T3 since all our hormones are made from cholesterol. I have in my extensive reading about nutrition and overweight never met the fact that carbs are essential for hypos, but I have obviously not read the articles you have. It's a fact though that hypos have more difficulty loosing weight and therefore in my view more important how we eat. We can't blame all overweight on mucin, I think. I know that mucin can be a factor in hypo overweight as well as in insulin- and leptin resistance, but it can also, for some at least, dissapear with lchf together with adequate hormon treatment.

But all this area is huge and I don't have all the answers either. At least let's agree that we can disagree and hope the future will solve the puzzle.

greygoose profile image
greygoose in reply torsae56

chriskresser.com/is-a-low-c...

Just one mention I found in a quick search - it was first on the list.

Actually, you only need cholesterol for steroidal hormones, not thyroid hormones.

I think, actually, we really can blame all weight-gain on mucin. A lot of us, anyway. When we're hypo we can put on a hell of a lot of weight whatever we eat or Don't eat. And it's so unfair to wave the calorie card in the face of a hypo who has no control over their weight. Maybe you haven't had this problem, but so very many of us have.

As to the mucin 'disappearing' when hormones are adequate, see what I said to gabkad. I think it's lot more complicated than that. :)

hose1975 profile image
hose1975 in reply togreygoose

And yet another website states the exact opposite:

drgangemi.com/healthtopics/...

"If you eat too many carbs and make too much insulin, then you’ll block the major thyroid hormone T4 from converting to T3."

I take everything written by naturopaths and functional practioners with a hefty pinch of salt. I know it's controversial, but I prefer facts rather than opinions stated as facts.

hose1975 profile image
hose1975 in reply togreygoose

I believe this to be much more reliable:

nahypothyroidism.org/deiodi...

"As with leptin resistance, it has been shown in numerous studies that insulin resistance, diabetes, or metabolic syndrome have associated significant reduction in T4 to T3 conversion, an intracellular deficiency of T3, and an increased conversion of T4 to reverse T3, further reducing intracellular T3 levels (91,100,92,94,147,184-193,235)."

And as we know, insulin resistance is marked by high levels of circulating insulin. And insulin is produced as a result of carbohydrate and, to a lesser extent, protein consumption.

greygoose profile image
greygoose in reply tohose1975

BUT there's a marked difference between 'too many' carbs and 'too few' carbs, Don't you think? There is such a thing as a happy medium. Nobody's suggesting you pig out.

hose1975 profile image
hose1975 in reply togreygoose

The point I was trying to make is that it would appear to be dubious at best, the idea that too little insulin inhibits the effective conversion of T4 to T3. It's impossible to eat a carbohydrate-free diet, certainly, but one only needs to ingest about 20g per day to cover vitamin-intake needs. All the rest is personal choice. And don't forget, the body needs glucose, not carbohydrate to function. Most people get their glucose in the form of carbohydrates but because of a wonderful process called glucogenesis glucose can be produced from protein (roughly 60% of protein gets broken down into glucose, just more slowly than carbohydrate gets broken down, which is why insulin-dependent diabetics need to calculate for protein in their insulin dose). Even fat can be broken down for glucose, if necessary.

The brain needs roughly 120g glucose daily. Not carbohydrates, but glucose.

greygoose profile image
greygoose in reply tohose1975

I Don't understand why you think the idea is 'dubious'. Do you not think there has been research done in this area? People Don't just pick these ideas out of thin air. And the reason I posted a link to Chris Kesser is that most people think he's good, and trust him. I doubt he's just guessing at this. He has a reputation to maintain.

in reply togreygoose

Hi gg . I started t3 at 10 morn 10 night couldn't tolerate it so consultant advised 5 morn 5 lunch time but my stomach is massive seems to be getting bigger everyday plus indigestion is awful . I can't stop eating Realy hungry . I went out shopping yesterday the first in a long time an I was so weak I had to get a trolley to lean on . When I got home after 2 hours I was so drained an weak I could hardly hold a cup . Starting to think I've cfs . Just wondered if you have any ideas on this . Oh my old name used to be donnanomore 😁. Any advice would be appreciated

gabkad profile image
gabkad in reply to

justbee, I used a glucosemeter when I was taking T3 because of the same problems you are experiencing. My blood sugar was going all over the place. Within half an hour of eating anything that contained carbs (i.e. even half a baked potato) my glucose went up to 19!!! Two hours later it was 3.2.

I can assure you, when it would take a dive it was like I was looking at the world from inside the back of my skull. I went grocery shopping and I had to eat a bun right there at the check out. Later at home, I had that same experience with my hands shaking, anxiety like crazy etc.

I experimented with different dosages of T3. Because of the huge swings in blood sugar and having to eat, I gained weight.

Now only on T4.

I think it depends on what's going on with us to begin with. I'm 57 years old and could stand to lose weight and maybe the T3 just pushes me into diabetic mode. It causes rapid absorption of glucose from the stomach, faster than the pancreas can produce insulin. Then because the blood glucose goes so high, the pancreas overshoots on the insulin. Very unpleasant.

in reply togabkad

Thank you for explaining all of that . I am 51 feel 101 I Realy don't know anymore I'm sweating again today shakey ive been all over the place from March just can't seem to pick up at all . Everything takes a lot of effort an just as u said its like from the back of skull. It's like I'm outside the world strange horrible situation . Thank you again Realy appreciate 😊😊

silver59 profile image
silver59 in reply togabkad

T3 increases lipolysis (break down) of body fat for energy use, which you previously couldn't access as well due to slowed metabolism. It has a more immediate effect on this process than T4, which the body converts as needed.

Increased lipolysis is good for weight loss and energy, but using stored fat for energy also leads to increased insulin resistance (because fats and carbohydrates are used by different metabolic pathways). This in turn leads to blood sugar spikes and lows because you have to produce increasing amounts of insulin to bring blood sugar down. So I think if you experience insulin resistance while using T3, it's probably best to eat a low carbohydrate diet, or just use T4 instead if you tolerate it.

gabkad profile image
gabkad in reply tosilver59

True. I have been on a low carb diet for many years. In fact, it was only relatively recently that I calculated grams of carbs per day and was shocked at how low it had become. I have increased it but am relying on low glycemic index foods to do it.

T3 is not for me on account of the blood sugar dysregulation it was causing. I think anyone who is taking T3, especially people who are taking only T3 should also monitor their blood glucose responses. A lot of people embarking on T3 have been hypothyroid for many years. Metabolic issues arise due to undertreatment or lack of treatment. Ramping up the metabolism suddenly by adding T3 can have negative longterm consequences.

in reply tosilver59

Thank you . Do you mean a diet similar to Atkins

silver59 profile image
silver59 in reply to

Atkins is a low carbohydrate diet. By removing items such as bread, pasta, cookies, grains, and starches, you minimize blood sugar spikes that follow these types of meals. Foods such as meat, chicken, fish, non-starchy vegetables, nuts, low sugar fruits (like berries), and dairy limited to cheese, butter, and cream are the components of a healthy low carb diet.

in reply tosilver59

Thanks for reply it's funny because I tryed Atkins diet around 4 years ago an I can honestly say I felt Realy good thanks again 😊

gabkad profile image
gabkad in reply to

I've found that eating something like a potato, if it's been cooked and cooled and potato salad with a vinagrette dressing (the vinegar) slows the digestion and there's no blood sugar spikes. Same with pulses like black eye peas. I make a salad with them using oil and vinegar.

Even with rice. If I make a few cups of basmati in the rice cooker and just put it in the fridge, then take a serving and heat it up with vegetables and whatnot, the blood sugar doesn't rise into orbit.

It means planning ahead, cooking enough for several meals.

Right now I've had to take some prednisone because I killed my back again. I'm going to the gym and doing exercise to rehabilitate it, but early days yet. This stuff really does a number on blood sugar too. Earlier today it was 9.3, then fifteen minutes later it was 5.6. I just ate a bowl of reheated rice, lentils and curried cauliflower and a couple of raw tomatoes and glucose only went to 5.9. I guess the morning's dose of prednisone has worn off.

On T4 only, blood sugars are normal.

The problem with T3 is I would get ravenous when the blood sugar would go down to low 3s. That was on 12.5 mcg per day. I suspect the time I experimented with 25 mcg in one day, it was lower still. I didn't have glucose strips in stock to check. I actually gained weight while on T3.

I suppose if someone's metabolism is okay then this stuff doesn't happen. Clearly mine is no longer what it used to be.

in reply togabkad

Oh dear you have to work very hard then it's a nitemare . Thanks for this info

gabkad profile image
gabkad in reply to

There's just no such thing as 'passive good health' when a person has hypothyroidism.

greygoose profile image
greygoose in reply to

Had you never had T3 before? If not, then I'm not surprised you couldn't tolerate 20 mcg straight off. Might have been better to start on 2.5 twice a day for a week.

So,, you're bloated, that's not the same as putting on weight/fat. Have you been tested for Ceoliac? Have you tried gluten-free. have you had your vits and mins tested?

The weakness would suggest you aren't properly nourished. So, I think your digestive tract should be investigated - unless you're on a very low-calories diet.

Then again, you could have low cortisol. Might be an idea to investigate that, too. :)

in reply togreygoose

Thanks gg I eat well don't count any calories I gave a hiatus hernia I was tested for coeliac it was fine . My vits all good except low iron . First time on t3 . Now one week on 10 mg split into two morn an lunch but no improvement palps bad dizzy an weak . I will mention cortisol at my next app . Thanks so much for reply 😊

greygoose profile image
greygoose in reply to

Are you supplementing your iron? Because that will cause low stomach acid.

It's early days, yet. These things take time. Have you tried taking Betain and probiotics for your digestion problems?

in reply togreygoose

Yea I'm taking iron ive never tryed the other things The other things ive mentioned il look into that . I just feel as if I'm never gona pick up . Thanks oh I forgot to say I take propanolol 80 mg for palps also I can't get enough salt drink it every day put it on everything I eat 🔫

greygoose profile image
greygoose in reply to

Well, maybe when you get your thyroid levels up, you won't have palps anymore, and won't need the propanolol. It doesn't agree with everybody. Are you taking a good dose of vit C with your iron? That helps absorption and makes it easier on your stomach.

in reply togreygoose

I have been taking 2000 vit c soluble every day ... Lol uve been kept busy today 😄. Thanks for all your help

greygoose profile image
greygoose in reply to

Your more than welcome, Justbee. I only hope it does help. It's so depressing when people are blaming you for your weight-gain and telling you you must cut back on your calories, etc, when it's not your fault at all.

Spareribs profile image
Spareribs in reply togreygoose

GG more ammo for you learnt today - rose hips (per weight) contain 50x Vit C more than oranges.

(who remembers a spoonful of rose hip syrup after that horrid (but good) codliver oil?) it's all coming back......

PS Daughters palps were low iron (ferritin).

gabkad profile image
gabkad in reply toSpareribs

Paprika is also a vitamin C bomb.

greygoose profile image
greygoose in reply togabkad

Wouldn't you have to use an awful lot of it to get enough vit C?

gabkad profile image
gabkad in reply togreygoose

'Apart from the question of priority, Szent-Györgyi had a more immediate problem: he could not repeat the experiments with vitamin C because he had used up the last of his supply. He had no large supply of adrenal glands on hand from which to extract more, and attempts with various fruits and vegetables failed as well. In the fall of 1932 it occurred to him to test paprika peppers for vitamin C content. Paprika proved to be a very rich source of vitamin C, and supply was no problem--Szeged was the paprika capital of Hungary. Szent-Györgyi immediately mobilized his staff for the large-scale extraction of vitamin C from peppers. Within a week, they had produced over three pounds of the pure crystalline substance. Rather than patent the process or the product, Szent-Györgyi sent batches to all researchers working on vitamin C or related problems (including Norman Haworth at Birmingham, who established its chemical nature, and then, with Szent-Györgyi, re-named it "a-scorbic" acid, since it prevented scorbutus, i.e., scurvy). Szent-Györgyi also sent a supply to the Health Organization of the League of Nations, to distribute in areas where scurvy was still prevalent (e.g., Norway).'

Goosey, it depends on how many milligrams per day you think you need. Requirement is not that huge as evidenced by the fact that people do well with rosehips.

Sweet red peppers as a regular item in the diet will provide vitamin C. And then you can also cook some good paprikash chicken or other meat stew.

There's probably a more healthful effect in consuming the plant material because it contains other valuable nutrients than just taking a vitamin C tablet.

Interesting though that originally he was getting the vitamin C from adrenal glands....

greygoose profile image
greygoose in reply toSpareribs

Yup, that's true. I always try to get vit C with rose hips. And I'm hoping to be able to do something with the rose hips in my garden this year. But you have to wait until after the first frost. And, by then,, it's usually too cold foe me to want to go out and pick them! lol

You're Lucky if you got rose hip syrup! I got that nasty, greasy NSH orange 'juice'. Ugh. But that was long before your time, I imagine. lol

stig5882 profile image
stig5882 in reply togreygoose

Thank you so much Greygoose I will take your advice and it is early days with the T3 so hopefully in time I'll get there. :)

greygoose profile image
greygoose in reply tostig5882

Anything hormonal takes lots of time. But, then again, we didn't go hypo over-night, so it's obviously going to take time for things to heal. I'm sure you'll get there in the end. :)

in reply togreygoose

You are such a wise goose. 😊

greygoose profile image
greygoose in reply to

Thank you, jobeth. :)

stig5882 profile image
stig5882 in reply togreygoose

Thanks for your advice Greygoose very much appreciated. xx think I have T3 dose sussed for now but feeling like I've been 'pumped up' :( do you think water tablets might help and if so which brand?...Loraine x

greygoose profile image
greygoose in reply tostig5882

They might and they might not. But, if you try them, be careful of your electorlites - sodium, magnesium, potassium... these can all become deficient when you excrete more water.

stig5882 profile image
stig5882 in reply togreygoose

Thanks for that information GG :)

I have an under active thyroid had 3/4 removed 22 years ago I'm on 175 mg levothyroxine daily and I gained a lot of weight during the 22 years I have watched what I eat but the weight won't go down . It gets Me down but all the doc does is tell u to see their dietician . I'm from Nottinghamshire , UK

greygoose profile image
greygoose in reply to

It has nothing to do with what you eat. But I very much doubt a dietician would know that - doctors Don't seem to, although weight-gain is a classic hypo symptom.

What you need to do is get copies of your blood tests - it's your right to have them - and see what's been tested and exactly what the results are. All the time you are ignorant of this aspect, doctors can - and will - continue to pull the wool over your eyes and tell you you are 'normal' when you're actually far from it. Because if you are still gaining weight then your FT3 is more than likely too low.

So, get those blood test results and post them here, and we'll be able to tell you what's what. :)

SilverAvocado profile image
SilverAvocado in reply togreygoose

GG, is there hope for all of us that the weight will go when our medication is sorted out? I've heard that the weight often sticks around :(

I've gained 4 stone during cancer treatment and another 1 that snuck in before I was diagnosed.. Use to be size 12/14, now size 20. So I'm pretty hopeful to get rid of it one day!

greygoose profile image
greygoose in reply toSilverAvocado

SA, I really can't say about weight gained due to cancer treatment. It's not something I know anything about.

Yes, some people say the weight sticks, but maybe they're just not optimised. Every case is individual, so let's just say there is hope.

I Don't know about English dress sizes anymore, but in French terms, I went from a 42/44 to a 56/58! Six dress sizes! I've now come down to 46/48. And I'm pretty sure I'm going to keep on losing. Slowly, but surely. But to do that, I not only had to go onto T3 only, but also sort out my nutritional deficiencies - which were many! :)

SilverAvocado profile image
SilverAvocado in reply togreygoose

Thanks, GG, it's god to have the hope :) I'm definitely not optimised now, but have made an appointment with Dr P, So am hopeful about that, too :)

greygoose profile image
greygoose in reply toSilverAvocado

I'll keep my fingers crossed for you! Let us know how you get on. :)

Jodypody profile image
Jodypody

Weight fluctuations are natural and if you've been eating more which is what I did (great I can eat like everyone else now! Err......no) then it'll come on easily. Dull as it is and it jolly well is as I see it ( even when T3 is optimal) you still have to be careful. We burn 18/20 calories per hour less than people who don't have this condition. It's a question of acceptance. I too get frustrated as it takes two indulgent days to gain weight and an age to lose. So we either a) crack on, keep it strict or b) relax and put the weight on. B isn't something I'm comfortable with so I just watch my carb intake, train hard and avoid low fat faddy fake food. Eat lots of veg, hardly any sugar, plenty of protein, decent fats and no wheat. End of lecture 😀

dylansmum profile image
dylansmum

Hi Greygoose, Might be a stupid question, but how do I get my FT3 to the optimal level?

Weebella profile image
Weebella in reply todylansmum

I've just asked same question 😤I don't understand all this

greygoose profile image
greygoose in reply toWeebella

By taking thyroid hormone replacement - T4 only, T4/T3, NDT, T3 only - which ever suits you best. I'm sorry, I Don't really understand the question. How would you think you would do it? :(

Are you both taking thyroid hormone replacment? What are you taking? How much are you taking? Are you taking enough?!? That is the most important question, because doctors are often unwilling to allow us to take enough to optimise our levels. Most of them want to keep our TSH in range, to the detriment of our FT3 - especially if we're not converting properly. My problem was not only that I wasn't converting, but my body couldn't handle T4 in any shape or form, so I had to go onto T3 only, which a lot of doctors Don't like. So, I have to self-treat, I'm afraid.

greygoose profile image
greygoose in reply togreygoose

OK, sorry, I didn't reply to that very well, did I.

I take it you haven't yet learnt what T3 is.

Well, the thyroid gland produces mainly the hormone T4 - which in commercial terms is Levothyroxine. That is a storage hormone, which has to be converted into the active hormone - T3 - for the body to be able to use it. T3 is needed by every single cell in the body to be able to function correctly. If T3 is low, it causes all sorts of problems - like depression, weight-gain, hair-loss, fatigue, etc.

Someone who can easily convert T4 to T3 is fine with just Levo. But if you can't, you need to take the T3 directly - one commercial name is Tiromel (there was Cynomel, but they've stopped production, we're told).

However, doctors Don't like prescribing T3, they mistakenly believe that we're all perfect converters. So those of us that need it, often have to self-treat.

In terms of blood tests, for the T4 you test FT4 and for the T3, it's FT3. The F stands for Free. That means that it's available, in your blood, to be taken up into the cells and used.

However, the labs usually refuse to test the FT3 - seems like a conspiracy to keep us ill, doesn't it!

Hope that helps. :)

greygoose profile image
greygoose in reply todylansmum

Dylansmum, see my replies below. :)

Divided profile image
Divided

My doctor asked if I wanted to start thyroxine because my TSH was 5.06 and my Free T4 was 12. I'm so glad he asked and the answer was a huge yes. Please go back to your doctor, tell him you self-medicated and feel better. (Don't mention the weight. There are any number of reasons for that.) I also had breathlessness as a symptom of hypothyroidism. I was sent for all sorts of tests that were unnecessary. I just needed thyroxine. I feel so much better now and my results weren't as bad as yours.

cathelen profile image
cathelen

Hi stig5882, if you carry on taking T3 it will lower your TSH , if your TSH is low then you will not be able to get the Doctor to give you Thyroxine because he will think Your TSH is not high enough to medicate.If you take T3 it makes your blood tests look like you have a suppressed TSH.

punch54 profile image
punch54

Greygoose I have read that us 'hypos' need some carbohydrate to help with the conversion of T4 to T3. Basically we are all different and you have to work out what is best for you which can be extremely difficult, it's a question of trial and error. I feel awful on hardly any carbs but some people are OK with it. I would advocate eating 'real' food not processed, cutting out sugar, gluten and wheat and eating healthy fats and some non refined carbs. Low cortisol has been my main problem and now I am sorting that out by taking 30mg of Cortef spread throughout the day and my thyroid meds are at last beginning to work after literally decades of struggle and ill health.

greygoose profile image
greygoose in reply topunch54

Punch, did you mean this reply for Stig? It's her thread. If you wanted to reply to me, you should have clicked on the orange Reply button Under my post, or I might not have seen it. :)

I'm glad that you too have read that about carbs. And I agree with you about all the rest. It is a question of trial and error to find out what suits us - because were all different. Which is why I hate these carefully laid out diet plans where they tell you what to eat and what not to eat. The one rule for me is : eat real food. :)

punch54 profile image
punch54 in reply togreygoose

Hello greygoose,

Sorry about that my reply was meant for you! I'm having a bad muzzy head brain fog day😖 Yes real food that we cook from scratch is the way to go😀

Mention the 'w' weight word to a NHS 'professional' and watch their eyes glaze over. I complained about my weight to an NHS Endo-knob and he told me my metabolism was working perfectly. I produced an A4 pic that showed me looking slim, he went quiet and volunteered nothing.

I've had a massive weight gain on T3, do believe it's due to some sort of hormone resistance.

greygoose profile image
greygoose

Vindaloo, there is no more Cynomel. They've stopped production.

And, funnily enough, I had to change a week ago, and I find that I prefer Tyromel - early days, I know, but I'm less breathless on it. We'll have to see how it goes, but Cynomel - which I've been on for years - is not more!

Vindaloo - just curious; you mention Tiromel's quality is not very high - what do you mean? And do you have any evidence for saying this?

greygoose profile image
greygoose

OK No need to get upset. I wasn't getting at you. I wasn't even arguing with you.

stig5882 profile image
stig5882

Thank you for your response and although I have only been on Tiromel for 1 week so will give it a while longer but will definately be keeping an open mind and if the weight keeps going up I will change to another brand. Many thanks. x

dylansmum profile image
dylansmum

Hi Greygoose, It's nice to see you back on here, I think you had a break from here? or maybe I haven't been on here much recently. Anyway I see you as a bit of an icon because you seem to know much more than us novices on this site! As I said on one of my posts on here I have been taking Levothyroxine for a few years now, and still have all the problems I had before I started taking 125mg per day! I really haven't got a clue about how to increase FT3 whatever that is! I think most of us on here have had a blood test, been diagnosed, been given a pill, then nothing, just get on with it! Please be patient with us, we are still ill, and learning to accept that we have to fight if we have the energy, to try to get the best medication that seems to be unavailable.x

Spareribs profile image
Spareribs

hmm.. my halfpenny's worth...

When I eat more I lose weight (force fed annually by Danish friend!) however I can't eat much, esp breakfast.

Humans aren't computerised input/output systems, the body is too clever and has it's own failsafes (emergency protocols, starve=hibernation etc.).

My GP said "you won't lose weight if you're hypothyroid" then backtracked & said 100mcg Levo is enough - see you in 6 months - well it's not enough.

Sunday, I lost 6lbs overnight! 10lbs this week (had a bit of a cold, 2nd this year) - now being tested for diabetes..... sigh....

I don't know any females that actually eat more than 1000 cals per day - we're frowned on for eating, esp at work! (last 4 jobs anyway). It's a disgrace.

Stig - it will be interesting how the GP interprets your tests after self-treating - I'm not looking forward to that day.... Never mind the stupid TSH - your FT4 is BELOW range too - your GP is very wrong to ignore that.

Best wishes Jane :D

Personal experiences are often better - thanks. I always had a bad experience with Mercury Pharma where all hypo symptoms would return quicker than ever. This took a while to work out what the heck was happening to me. Like I was being poisoned. Soon as I switched I felt improvement. Glad you're feeling better.

Roadrunnergreg profile image
Roadrunnergreg

It's very obvious the err so called doctor is looking at what the lab wrote "no action required" instead of looking at the figures and the range your supposed to fall into, I had to go through the same process doctor doing what the lab wrote

For optimal levels your TSH should be 1or below, your FT4 should be around 17, and your FT3 should be about 6-6.2 as the range is 3.2-6.8

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