Weight gain: Can anyone explain to me in simple... - Thyroid UK

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Weight gain

Kimkat profile image
24 Replies

Can anyone explain to me in simple terms why, if you are hypo, there is weight gain? My weight seems to be galloping away and I don’t seem to have any control whatsoever. I have been through periods of practically starving myself to prove a point with very little weight loss. It’s becoming a bit of an obsession with me now and I can get quite depressed about it. I very rarely have anything that you can class as a treat and try to get my daily quota of 5 a day, my meal sizes have been cut, even though I didn’t really pile my plate up anyway and I eat a pretty balanced diet. Since my RAI a few years ago I’ve really struggled.

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Kimkat
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SlowDragon profile image
SlowDragonAdministrator

Metabolism is controlled absolutely by the amount of levothyroxine/T3 in your body

When adequately treated your weight gain should desecration

Looking at previous posts you are presumably still extremely under medicated if still only on 50mcg levothyroxine

Absolutely essential to regularly retest vitamin D, folate, ferritin and B12 as well as TSH Ft4 and Ft3

What vitamin supplements are you currently taking

When adequately treated TSH will frequently be extremely low, well under one

Most important results are ALWAYS ft3 followed by Ft4.

Aiming for Ft3 at least 60% through range. On just levothyroxine Ft4 frequently needs to be right at the top of range or over range to get ft3 high enough

After RAI common to need addition of small doses of T3 prescribed alongside levothyroxine

Please add most recent results

Kimkat profile image
Kimkat in reply toSlowDragon

I’ve been on 75mcg for the past five weeks, after begging my GP he caved in and agreed to it. I will be getting more bloods done in around three weeks time, next endo telephone appointment is in august.

SlowDragon profile image
SlowDragonAdministrator in reply toKimkat

Unless extremely petite likely to need further increases over coming months

Kimkat profile image
Kimkat in reply toSlowDragon

I’m short at 5ft and I used to weigh roughly between 8-8.5 st in my 50s which I felt comfortable with at size 10 I’m now 10.10st and feel really uncomfortable 😕

SlowDragon profile image
SlowDragonAdministrator in reply toKimkat

10st 10lb = 68kilo

68 x 1.6 = 108mcg per day as the likely dose levothyroxine you might need

108 x 7 days = 756mcg per week

100mcg x 3 days week and 112.5mcg 4 days week = 750mcg per week

If you were optimally treated and managed to loose some weight down to 8st 5lb = 53kilo

53 x 1.6 = 85mcg per day as the likely dose you might be able to reduce to

85 x 7 = 595mcg in total per week

100mcg x 3 days week and 75mcg 4 days week = 600mcg

Kimkat profile image
Kimkat in reply toSlowDragon

That’s interesting, maybe put this to my GP while he’s on my side 😄

SlowDragon profile image
SlowDragonAdministrator in reply toKimkat

Only increase levothyroxine upwards in 25mcg steps

Kimkat profile image
Kimkat in reply toSlowDragon

If I’m honest I didn’t think it was an individual’s choice, I was under the impression that the GP or endo was the one to make that call but I started on 25 mcg a year ago, then 50 and now 75. I can’t say that I feel that much different but my hair has really thinned out and as I’ve mentioned my weight is uncontrollable but I’m forever optimistic 🤞🏼

Kaytlou profile image
Kaytlou in reply toSlowDragon

Oh this is interesting! Ive never seen this being done before.

Kimkat profile image
Kimkat in reply toSlowDragon

Also I will be doing full blood test privately so I can’t see how my vitamins are.

SlowDragon profile image
SlowDragonAdministrator

guidelines on dose levothyroxine by weight

Even if we frequently don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

Also here

cks.nice.org.uk/topics/hypo...

gp-update.co.uk/Latest-Upda...

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

shaws profile image
shawsAdministrator

This link may be of interest:-

stopthethyroidmadness.com/h...

Kimkat profile image
Kimkat

Yep it’s soul destroying. Last year I spent four months in a state of being constantly hungry, even lightheaded at times and I lost 4 lbs. my muscles ache all the time too, whether I move or not. I think my brain is used to that now 😟

Lotika profile image
Lotika

I was just reading a chapter in a book about diet and hashis earlier today and went to look it up as I remember the author was slightly concerned about low carb diets reducing fibre too much.

Here is what he has to say on the issue:

Studies find that fiber is the fuel source of the healthy bacteria, while yeast and harmful bacteria prefer our high sugar intake. One such study found that increased fiber shifted the microbiome from bacterial species associated with obesity to those known to promote a leaner body type. Additionally, these fiber-loving microbes produce vitamins and play an important role in the conversion of T4 into the active thyroid hormone T3.

Book is “The Thyroid Fix” by Shawn Soszka. Picked it up for under £3 on kindle today. It’s sensible so far except following on from a criticism of a different book I was reading yesterday I don’t believe anyone should trust one-size-fits-all blood ranges that these books tend to promote! It’s going to depend what treatment you are on and it’s going to depend what you need as an individual.

His overall conclusion on diet is GF, lots of meat and fish and veg and non-gluttonous whole grains allowed. Some fruit. Aim to be reasonably low sugar. Maybe try sheep or goats dairy rather than cow.

Kimkat profile image
Kimkat

Thank you for that info, a few things to look at certainly. What is PA?

EmmaM44 profile image
EmmaM44

Hi Kimkat

I'm sorry to hear you are struggling with your symptoms. I'm currently in the process of changing my medication from levothyroxine to natural desiccated thyroid/T3, it's only been a few days so difficult to say yet if there is any improvement, I certainly don't feel any worse.

One of my symptoms is weight gain as is the case for many people who are on levothyroxine.

I've been on it since I was diagnosed 2 years ago and my weight gain has gotten worse not better also many other symptoms have quickly gotten worse such as thick skin texture, puffy face, extreme bloating to the point that it actually hurt to move!! and generally feeling quite low most of the time.

That isn't to say that it doesn't help people if that is what the body requires but it might be something worth looking into if you are on Levothyroxine.

You absolutely do have a say in what you are being prescribed, I too didn't think there was another alternative until I spoke to a nutritionist. Also the Teva brand of levothyroxine has quite a reputation of not agreeing with people(which is what I've been on the entire time) and not great if you are sensitive to gluten as there are fillers in them.

I have had to go privately to see an endocrinologist as they seem to be the only ones that can prescribe alternatives to synthroids like levothyroxine. It's quite costly, I can't really afford it but anything to be well again.

I found this article really helpful,

restartmed.com/levothyroxin...

in my opinion I've realised that to keep researching and educating myself in thyroid health you can gain more control over hypothyroidism instead of feeling like it's a big mystery as I did up until recently. You'll probably become more of an expert than an endocrinologist!

Something that was also recommended doing by my nutritionist was a Medicheck do it yourself blood test that tests TSH, T3, T4 and antibodies. Looking at all of these levels can indicate what the body needs instead of just guessing and spending months and years feeling terrible like me!

medichecks.com/

Sorry, I'm not sure how to put in proper website links.

I hope you find the right help soon. Don't settle for something you feel isn't doing you any good.

Abi40 profile image
Abi40 in reply toEmmaM44

Hi EmmaM44,

Really interested to see how you are feeling a couple of month in? I’m just waiting for my NDT to arrive and hope to start feeling netter very soon. I was on ndt for a month but they stopped making it so just waiting god another order to arrive. In that time I lost a stone and felt human and was able to exercise. I’m not withdrawing and struggling to do basic things just being on Levo. Have you lost much weight? I agree with all you say re having to do all the research yourself! It’s almost a full time job researching it all. Hope by me starting thyroid s I finally on the road to feeling better. Xx

Kimkat profile image
Kimkat in reply toAbi40

Hi Abi, I’ve recently had my bloods done after being on an extra 25mcg, which makes my daily dose 75mcg, my levels could be better so I’m now waiting to speak to my GP for another increase to 100mcg. However I have put more weight in so I am now just under 11st, which is depressing me. I’m also trying to get my vitamins and minerals optimal. Very interesting to read that you have lost weight on NDT though. I would be ecstatic if I could start losing weight. Have you tried to lose weight or did it just come off when you started on NDT? And can I ask your age? Also do you have a thyroid?

EmmaM44 profile image
EmmaM44 in reply toAbi40

Hi Abi40, Sorry for the late reply. That's great that you're starting on NDT. Here is what I've noticed since starting it myself, by the way I am still on a low dose of levothyroxine, my endocrinologist was worried I'd crash if I was suddenly off it altogether. I'm still on 25mcg per day.

So I started on 30mcg of ndt and 25 mcg levo and I immediately felt my horrible symptoms disappear. The awful bloating has gone, my skin is looking so much better, less puffy and inflamed facially which was a concern as it makes you feel very self conscious.

I don't think I've lost much weight but the lack of bloating and feeling more comfortable in my own body is in itself feels amazing, I was so bloated some days it actually hurt to move. horrible. So I'm putting that down to taking less levothyroxine. But I've noticed I've definitely go my waist back!

I've had a follow up with my endocrinologist about 2 weeks ago and he's increased the ndt to 45mcg and still on the 25mcg of levo but he's hoping to take me off levo completely eventually.

So all in all I'm feeling pretty good.

I hope you see improvements too, keep me posted! xx

LincsLady profile image
LincsLady in reply toEmmaM44

How are you getting on with reduction in levo? I'm losing weight now after stopping my levo a week ago. GP won't prescribe NDT so I'm going to wait until next blood test and if TPO higher I will find private Endo for NDT. I've been diagnosed with Hashimoto disease so may need something unless my anti inflammatory way of eating works. Single ingredient foods and definitely no processed food. Lost 3lb this first week.

EmmaM44 profile image
EmmaM44 in reply toLincsLady

Hi LincsLady I'm sorry I didn't reply. I've been unwell with a separate issue! ugh!

I'm generally feeling and looking much better so that's great, my tsh did increase so my endo increased my dose of erfa to 60mcg and I'm still on 25 mcg of levo. I was on a long dose of antibiotics so this might have interfered with my system- very likely.

How are you feeling? any luck with getting NDT?

I'm also taking Circumin by Jarrows formula recommended by a nutritionist 2 per day as a natural anti inflammatory so might be good for you too.

Sorry again for not replying sooner.

LincsLady profile image
LincsLady in reply toEmmaM44

Hi @EmmaM44 It's ok I do understand and I am sorry to hear you have been unwell but glad you are feeling much better now. I was on almost 3 months of antibiotics 2 years ago as I had sepsis and was in hospital all that time. It was a few months afterwards that I got diagnosed with Hashimoto's and I do wonder about the connection.

I restarted my Levothyroxine 100mcg per day as I managed to get Thybon Henning privately prescribed (20mcg per day) supplied 3 months ago.

I bought the Medicheck Advanced Thyroid test kit and went to a local BMI clinic yesterday. Just got an email to say my sample has been received and results will be available within 4 days.

I had a GP blood test 1 month ago and my TSH had dropped from 4.0 to 0.2 so the T3 (Thybon Henning) clearly had an impact. I wouldn't say I am 100% yet but getting there. I have lost 2.5 stone in total and 4.5 stone I want to lose to get to my end goal (which I have not been at for 20 years but ever the optimist).

I will try the Circumin - thank you for the suggestion.

Hoping you continue to get better each day.

EmmaM44 profile image
EmmaM44

Also found this really helpfulyoutube.com/watch?v=B--SvRK...

Kaytlou profile image
Kaytlou

Oh my god! I was literally coming on here to say the EXACT SAME! Its so disheartening and i actually feel quite depressed about it all. Im sorry i have no answer for you- wish there was a magic pill! Ive done the same as you. I virtually live off between 1000-1300 calories a day, and miss out on treats etc but for nothing. I wondered if reverse dieting was the answer...? I hope you get an answer and look forward to reading any answers you get. Good luck to you! Xxx

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