Continued weight gain on thyroxine. How is this... - Thyroid UK

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Continued weight gain on thyroxine. How is this possible?

Tiredofthis77 profile image
25 Replies

Hi all,

Has anyone experienced increased weight gain on thyroxine? I was off thyroxine for a year as I kept gaining weight on it previously, so much so that my doctor thought I didn't need it. I didn't feel well off it but some of the weight slowly came off.

Last July, after a good while of being off medication, I went to see a specialist, who told me he thought i didn't need thyroxine and that I was just very unluckly with low levels. I soldiered on feeling like crap until I had a health check at work in February, which raised questions over my rapid heart rate and weight.

I found a new GP who put me on thyoxine again. My heart rate normalised and I felt great for a while. I've been slowly increasing meds since and am now at 100mcg, however, my weight has started to pile on. I never feel hungry but I do eat at least two meals a day but not enough to justify gaining a stone in such a short period of time.

My heart rate has also risen dramatically (120bpm resting) so I've been prescribed betablockers. My doc has referred me to endo again, which never ends well for me. I suggested T3 to doc, who says he can't prescribe even a trial due to the expense.

I'm at breaking point and just want to stop thyroxine. I know the weight will drop off and I'll feel better, but I don't know what to do.

Has this happened to anyone else, and if so, what was your solution?

Most recent blood tests when on 75mcg:

TSH 2.34 (0.55-4.78)

FT4 18 (10-25)

FT3 4.7 (4.0-7.0)

Thanks for listening,

Tired x

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25 Replies
Nanaedake profile image
Nanaedake

You are still undermedicated and need to increase levothyroxine unril TSH is around 1 and see if weight gain diminishes. What brand of levothyroxine are you taking? Always stick to same brand once you find one that suits you. They are not all the same. You may find you absorb one brand better than others. Many people do not get on with TEVA.

Also get vitamin levels checked. Vit D deficiency is very common with thyroid conditions. If vit D is low, other vitamins are likely to be as well.

Be aware that beta blockers may reduce magnesium levels.

Tiredofthis77 profile image
Tiredofthis77 in reply toNanaedake

Thank you. I'm on MercuryPharma but tried pretty much all options over 20 years. The more thyroxine I take the more weight I gain. I honestly just want to stop taking it. Vitamins are fine apart from iron, which I've started taking.

I never managed to lose weight and even kept gaining weight on T4 only, even on as much as 200 mcg daily. Back then, no doctor ever tested my FT3 levels. After ten years on levo, I switched doctors and my free T3 turned out to be not even halfway through range. So I was a poor converter and did much better on NDT.

I agree with what others have said about you still being under medicated. Your TSH should be around 1 or lower, and your FT4 levels are only about halfway through range which could explain your low FT3 levels. Many people on levo only need their FT4 levels at the top of range or even slightly above for sufficient T4 to T3 conversion.

It's possible you are also a poor converter, but I'd say it's too soon to tell. I suggest getting your FT4 levels optimal (definitely above 20, maybe even closer to 25 or slightly above) before considering adding T3 or trying NDT. Many people do well on levo only once they find the right dose.

Tiredofthis77 profile image
Tiredofthis77 in reply to

Thank you. It's just really tough having to deal with the weight gain. The more thyroxine I take, the more accelerated the weight gain is. My clothes don't fit me any more and I don't know how much longer I can put up with it, I'll try though

in reply toTiredofthis77

75 mcg is still quite low a dose. Many people need 150 mcg daily or more. Your labs suggest you are not taking enough levo at the moment.

What can be difficult is to disregard the TSH once it's 1 or lower, and go by symptom-relief and your free Ts, especially FT3. The patient often needs to be responsible for this as most doctors are obsessed with the TSH.

Many people self-source T3 or NDT, either because of cost or because they cannot find doctors to prescribe these drugs or both.

However, even if low FT3 levels can slow down metabolism, adding T3 alone won't result in weight loss if you continue to have vitamin/mineral deficiencies and/or other hormone imbalances such as insulin resistance or adrenal fatigue - all common in hypothyroid patients.

Tiredofthis77 profile image
Tiredofthis77 in reply to

I'm now on 100mcg and the weight gain has increased dramatically. To put it in perspective I was a stone lighter when doc took me off the meds thinking I wasn't hypo (levels were very low in range). It's just bizarre

Nanaedake profile image
Nanaedake in reply toTiredofthis77

What were your blood tests when off levo? Did your doctor rule out a pituitary problem? Have you any other coexisting condition? Are you on any other medication?

Tiredofthis77 profile image
Tiredofthis77 in reply toNanaedake

Hi Nanaedake, I didn't ask for the results when I was off thyroxine stupidly - I just accepted they were the experts. No other condition apart from pernicious anaemia. I'm on betablockers due to a rapid heart rate but that's it

Nanaedake profile image
Nanaedake in reply toTiredofthis77

I would get a copy of the results when you were off levothyroxine just to rule out a pituitary problem.

What is your vitamin D level? Also, folate?

You will not absorb vitamin B12 well if vitamin D is low. Have you had coeliac disease ruled out? Do you have digestive problems?

Tiredofthis77 profile image
Tiredofthis77 in reply toNanaedake

Thank you. I'll see if I can get a hold of them tomorrow. Vitamins all good apart from ferritin, which I've been prescribed. I have no appetite, dodgy stomach, very gassy stomach, flatulence. I permanently feel like I've just had a three course meal. Should have mentioned I have diverticulitis, too. I was referred to a gastro clinic due a few years back due to digestive issues and that was the finding. I have been tested for coeliac disease several times before but not recently.

Nanaedake profile image
Nanaedake in reply toTiredofthis77

Very common to have stomach problems with thyroid disease. Have you read Administrator, Slowdragon's advice on going gluten free even if no evidence of coeliac disease?

DippyDame profile image
DippyDame

Most of us will understand and empathise with you....it's tough but you can feel better as many of us have experienced.

Your best source of advice is here....I can vouch for that!

Weight gain is a symptom of hypothyroidism.

You are under medicated...100mcg is not a huge dose, but levo is likely to be your problem if your conversion is poor.

Your TSH should be lower ....under 2.

Your FT3 is far too low and suggests poor conversion of T4, (the storage hormone), to T3 (the active hormone)

T3 is needed by the trillions of cells in the body, in a constant and adequate supply , in order to function properly. This doesn't appear to be happening.

Are your nutrients optimal.....Folate, Ferritin, Vit B12 and Vit.D...they support conversion.

I suggest you need to add some T3 to compensate for poor conversion.....but you have already worked that out.

Thyroid care is a disaster, medics are generally clueless . Your specialist certainly was, no wonder you felt like crap!

You could have a thyroid genetic test which will show that you have (or not) a faulty Dio2 gene which impairs conversion. ...a positive result persuades some endos to trial T3.

A homozygous result (inherited from both parents) is shown by research to have a greater impact on conversion than a heterozygous result (from one parent)

This link will reveal more

thyroiduk.org.uk/tuk/testin...

It might be a good idea, as you have increased levo since the results above, to have another full thyroid test before a genetic test...but not vital.

Properly medicated your symptoms will improve....but it takes time.

Try and stay positive.

Good luck

DD

Tiredofthis77 profile image
Tiredofthis77 in reply toDippyDame

Thanks DippyDame, I'll check it out. I know weight gain is a key symptom of hypo but why would thyroxine increase weight so rapidly? I honestly want to stop taking it because I know i'll feel better within a week but I don't want to undo any work I've done. Here are my vit levels healthunlocked.com/thyroidu... - I've been prescribed Ferrous Fumarate - 210mg twice a day

DippyDame profile image
DippyDame in reply toTiredofthis77

It may not be the thyroxine per se that is causing weight gain but the lack of T3 - due to poor conversion - that is compromising your metabolism and causing weight gain

theinvisiblehypothyroidism....

Tiredofthis77 profile image
Tiredofthis77 in reply toDippyDame

Thank you. I'm not sure what to do now - wait for endo appointment or take the plunge with T3. I'm getting so impatient

DippyDame profile image
DippyDame in reply toTiredofthis77

If you can I would do the Dio2 test....info in previous reply.

It's a lot to take in when you feel unwell but sometimes you just have to take control.

I could barely function when I did that because medics didn't have a clue and I felt it was my last option.

Be strong.....and patient.

Tiredofthis77 profile image
Tiredofthis77 in reply toDippyDame

Thank you

SlowDragon profile image
SlowDragonAdministrator

How long have you been on 100mcg?

Bloods should be retested 6-8 weeks after each dose increase

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Ask GP to test vitamin levels (and thyroid antibodies if these haven't been tested yet)

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Low vitamin levels are highly likely and getting vitamins optimal can help improve conversion of FT4 to FT3

If you have Hashimoto's it's very common to become gluten intolerant and many find strictly gluten free diet reduces symptoms

About 80% of primary hypothyroidism is due to autoimmune thyroid disease (Hashimoto's)

Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

Assuming test is negative you can immediately go on strictly gluten free diet

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

drknews.com/changing-your-d...

if GP is unhelpful getting FULL Thyroid and vitamin testing privately recommended

thyroiduk.org.uk/tuk/testin...

For thyroid including antibodies and vitamins

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

My experience is that the higher my FT3, the fatter I get. I’ve tried many combos of medications, NDT, Levo, and T3. Very consistently, as my FT3 goes up in range, I gain weight. My FT3 is at 90% of the range and FT4 is at 85% and I’m bigger than I’ve ever been in my life. This has been a consistent pattern. My levels go down and I lose weight, to a point. If it gets way below range, I also gain weight. As levels go up, I gain. But as levels go up I have more energy and as they go down my energy crashes, so it seems I get to choose between being thinner and tired, or overweight and have energy but also only sleep 4-5 hours a night and hair falling out. This makes no sense to me. My appetite is a bit higher as levels go up, but it doesn’t account for all the weight gain. Not a clue. I’m getting pretty fed up.

Tiredofthis77 profile image
Tiredofthis77 in reply toNoUserNameIsNotUsed

That sounds absolutely horrendous. Do you have a sympathetic doc/endo?

NoUserNameIsNotUsed profile image
NoUserNameIsNotUsed in reply toTiredofthis77

I do. She is willing to try any kind of meds, doses, or combos and doesn’t care one bit about the TSH (which is currently .009). For a couple years I was at a normal weight when I was on 1.75 grains of naturethroid, but it stopped being enough. My levels kept going down and down and I kept getting more and more tired. We increased the NDT and within two months I had gained 20 lbs. So weird! So we are trying NDT plus Levo and that’s when I started gaining even more weight and hair falling out (among other side effects). I tried NDT and T3 and my blood sugar went through the roof, appetite was crazy and mood was horrendous and I continued to gain. The dr thinks we just need to keep adjusting until we hit the right dose and combo. I’m going to try harder to cut down on how much I’m eating and see how much of the weight is due to increased appetite. The appetite increase might be enough that over time it adds up. Also, we just adjusted the meds down a bit, which might help. The 4-5 hours of sleep can’t continue on like this. So frustrating!! Thanks for the concern. I know a lot of people on this forum have eventually gotten the meds and dose right for them. There’s hope!

shaws profile image
shawsAdministrator

You may be interested in the following. It is known that, for some people, levothroxine causes weight gain because it may not raise your metabolism sufficiently.

stopthethyroidmadness.com/h...

NoUserNameIsNotUsed profile image
NoUserNameIsNotUsed in reply toshaws

Thanks shaws. I was on NDT only for many years and as I increased it (and T3 went up), I gained and gained (although at least my hair wasn't falling out). That's why the dr. recommended the addition of T4 instead of increasing NDT. I'm a great converter, my T4 and T3 are around 90% of the range now, but I still gain. The only time I'm at a normal weight is when I'm not taking sufficient medication (NDT alone or NDT + T4) to resolve hypo symptoms (and T3 is below range). I tried adding T3 to NDT and it was horrible, but I haven't tried just T3 alone yet. It's true that my appetite goes up as T3 goes up, so perhaps this is the issue. It doesn't seem that that would be 100% the cause of all the weight gain, but it's possible that even a slight increase in appetite adds up over time.

Is it possible to have T3 high in the range and still have low metabolism?

I know metabolism is complex and involves many hormones, but my weight seems to be pretty tightly correlated with the amount of meds and level of T3, which just seems paradoxical.

shaws profile image
shawsAdministrator in reply toNoUserNameIsNotUsed

I am not medically qualified but Dr Lowe took only one blood test for the inital diagnosis and thereafter it was all about small increases in dose until symptoms were relieved. He'd never prescribe levothyroxine. Only NDT or T3 for patients who are restistant.

Is your TSH around 1 or lower?

NoUserNameIsNotUsed profile image
NoUserNameIsNotUsed in reply toshaws

Yes, it's .006, which is typical for me whether I'm on NDT alone or NDT+T4.

Latest labs:

TSH: .006

Free T4: 1.47 ng (.82-1.77)

Free T3: 3.9 pg (2-4.4)

rT3: 18.8 ng (9.2-24.1)

Cortisol (morning, fasting): 14.7ug (6.2-19.4 for morning)

PTH: 23 p g (15-65)

I worry about going higher since I sleep only 5 hours a night with this dose and hair is falling out. Appetite and weight increase with every dose increase.

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