T3, cytomel and weight issues: I had a baby 1... - Thyroid UK

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T3, cytomel and weight issues

Bonnie2014 profile image
31 Replies

I had a baby 15 months ago which brought on Hashimotos's disease. I was really poorly and had every underactive thyroid symptom going and do feel a lot better now but I put on about a stone and a half in weight in a very short space of time and I just can't shift it. Last month as a test I bought some really strong appetite suppressants so that I could cut my calories down to 1,200 calories a day which I did for 3 weeks and I still didn't lose a single pound. Previous to this I've tried every diet from the 5:2 through to Atkins and I neither lose weight or gain weight, I just stay exactly the same!!

I've been to the doctors on a number of occasions, had loads of blood tests for kidneys, liver, cortisol and everything comes back normal. I'm sure that it must be my T3 but the hospital have refused to test my free T3 as my TSH is fine now. I told my doctor that I wanted to be referred to a private endo and pay for the test to be done but she won't refer me as she's worried that they'll prescribe the T3 cytomel drugs and thinks that they're dangerous and doesn't want me to have them. 10 months on and I'm at desperation point and am thinking of taking matters into my own hands and ordering them off the internet myself (I know that you'll probably tell me that this is stupid) but my doctor has scared me a bit. I'm so fed up of trying so hard to lose the weight and nothing at all seems to work, I'm really not stupid and know how to eat sensibly and exercise but it's just not working.

I'd be grateful for advice from anyone in a similar position who's taken Cytomel and if they had any side effects. If this was prescribed or advice on if I can pay to get a free T3 blood test without a referral from my doctor.

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Bonnie2014
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31 Replies
jezebel69 profile image
jezebel69

Hi Bonnie - I really feel for you. I have been in that same position for over 10 years...actually the Atkins worked for me - so did the Zoe Harcombe diet but just the first stage. You cant live on these diets because you will fail to get the nutrients the thyroid needs to function. I dont know what your blood test results have been like but I have needed to get my TSH below 1 and my T4 up to 20. Maybe your meds are not optimal for you?

helvella profile image
helvellaAdministratorThyroid UK

If you do really need T3 (liothyronine) then it is the not getting it that is dangerous.

Cytomel is simply the biggest, possibly oldest, USA brand of liothyronine. In the UK you would be far, far more likely to get Mercury Pharma liothyronine.

You can get your own private tests to your heart's content, if your pockets are deep enough. Have a look here:

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

Plenty of others will probably dive in to mention things about eating too little.

Rod

Bonnie2014 profile image
Bonnie2014 in reply to helvella

Hi, thank you both for your replies.

My TSH is 1.4 but the doctor hasn't told me what the T4 is, the last time it was tested it was 3 but I'm not sure if that's still the case. I know that people will say that I'm stupid not eating enough etc but I just had to test it for myself as I thought maybe I must be overeating but it's really not the case and I regularly exercise too so there has to be something else.

Rod - do you take the liothyronine? Maybe I should get tested privately, thanks for the link. My doctor said that it causes Osteoporosis which has scared me.

helvella profile image
helvellaAdministratorThyroid UK in reply to Bonnie2014

No - I do not, I take levothyroxine only.

Too little thyroid hormone appears linked to osteoporosis. And grossly too much as in Graves sufferers. I am not aware of any evidence that appropriate levels or T4 and T3 cause it.

Rod

Clutter profile image
Clutter in reply to Bonnie2014

Bonnie, I take T4+T3. T3 won't cause osteoporosis if you make sure your FT3 is within, rather than over, range.

Bonnie2014 profile image
Bonnie2014 in reply to Clutter

Thank you, I'll get my T3 tested if I can. Did your doctor prescribe the T3 or did you go private?

Clutter profile image
Clutter in reply to Bonnie2014

Bonnie, it was prescribed until I had RAI, then I was switched to Levothyroxine. After 15 months I self medicated with the T3 I had left over and bought some online, presented a much improved me to the endo and he agreed to prescribe. GP does the repeat scripts as advised by the endo.

Bonnie2014 profile image
Bonnie2014 in reply to Clutter

Hi, thanks for your reply. I just went onto your profile and it looks like you've had a really tough time of it, I really hope that you're feeling better now. It makes me feel like my problems are pathetic in comparison. I was going to private message you about the T3 drugs to ask your advise about something, how do I do that from your profile page, if you don't mind of course.

Clutter profile image
Clutter in reply to Bonnie2014

Thanks Bonnie, I'm fairly well now. Need to build stamina and fitness but that takes time. Your problems aren't pathetic in comparison. You want to recover your health to enjoy your baby and your future.

Click on my username and click on the orange Send message button to PM me.

Bonnie2014 profile image
Bonnie2014 in reply to Clutter

Glad that you're feeling much better and hope you start getting your fitness levels back. It won't let me pm you, not sure why but I'll try again tomorrow.

Clutter profile image
Clutter

Bonnie, Ask your GP receptionist for a printout of your recent thyroid results and post them with the lab ref ranges (the figures in brackets after your results) and say what dose of Levothyroxine you are taking and members will advise whether you are optimally medicated. If you aren't, you will struggle to lose weight.

Bonnie2014 profile image
Bonnie2014

I'm not sure that they'll give me that information, I'll try but I feel like I'm becoming a pest. They only seem to give me the TSH which is normal at 1.4.

helvella profile image
helvellaAdministratorThyroid UK in reply to Bonnie2014

If they won't give you the information, stuff this under their noses:

nhs.uk/chq/pages/1309.aspx?...

You are legally entitled to this information. You do not have to give ANY reason.

I'd hope you will be a pest until you get what you should.

Rod

Bonnie2014 profile image
Bonnie2014

Thanks Rod, that's very kind of you. I'll phone them tomorrow as I do feel like I'm going mad and really need to get this sorted. My doctor is very kind and I know that she's got my best interests at heart but she has a very holistic approach and doesn't really like drugs which isn't that helpful if you need them to make you better.

Clutter profile image
Clutter in reply to Bonnie2014

Bonnie, the receptionist may be unaware of your patient rights. Ask to be put through to the practice manager or your GP if she tells you she can't provide the information.

When you reply to a post click on the orange Reply tab and the poster will be sent an email alert. Replies get missed otherwise.

Stourie profile image
Stourie in reply to Bonnie2014

Why on earth is she a doctor if she doesn't really like drugs ????

Bonnie2014 profile image
Bonnie2014 in reply to Stourie

I agree it's a bit ridiculous, she likes to take the holistic approach I think. So grateful for everyones help on this website, it's really made me take action.

greygoose profile image
greygoose in reply to Bonnie2014

Bonnie, T4 (levo) and T3 (cytomel or cynomel) are not drugs. They are thyroid hormones. Hormones keep you alive. There are many, many of them and you need all of them. If one is not optimal, you need to take hormone replacement to bring it up to normal. That is not taking drugs. If you are missing any one of them you will die. If you are not feeling better, it is possibly because you are not able to convert your T4 to T3 adequately. Therefore, some form of added T3 is essential.

Thyroid hormone replacement IS holistic. If she doesn't know that she's not much of an holistic doctor! If she wants you to take something 'natural' ask for NDT (Natural Dessicated Thyroid). It is made from dried pigs thyroid - you can't get much more natural than that! Lots of people feel better on that than on T4 only. It contains all the thyroid hormones - T4, T3, T2, T1 and calcitionin - which controls calcium levels. See what she says to that.

Going on low calorie diets and agressively exercising - by which I mean anything more than walking or swimming - when your T3 is low, will not make you lose weight. It will probably make you put on weight! Because a) you are not getting enough calories to support your conversion, which makes you more hypo and therefore put on more weight. b) exercising uses up your calories of which you don't have enough to support conversion. And it uses up your T3 and you don't have enough T3 to start with!

Eat more calories, not less. It's not what you eat that is making you put on weight. I'll say that again : It's not what you eat that is making you put on weight. If you eat a good diet - plenty of protein, plenty of fat (no, eating fat does not make you fat), plenty of fresh fruit and veg, and a decent amount of salt - your adrenals need salt. Get your vits and mins tested - iron/ferritin, B12, magnesium, zinc, folate, vit D, etc - if your doctor is really holistic, she should do that - and supplement if deficient - which you probably are in most things.

All this will aid your conversion on condition there are enough calories! lol

Bonnie2014 profile image
Bonnie2014 in reply to greygoose

Hi, everything that you've said makes sense.

Thanks for your help.

greygoose profile image
greygoose in reply to Bonnie2014

:)

Bonnie2014 profile image
Bonnie2014

Thanks, hopefully I'm doing it right now. I'm a bit of a grandma with the computer sometimes :)

Stourie profile image
Stourie in reply to Bonnie2014

You're doin it right :):)

Bonnie2014 profile image
Bonnie2014 in reply to Stourie

Thanks :)

greygoose profile image
greygoose

Yes, I take it and no, there are no side effects. What side-effects does she expect. She is extremely ignorant, I'm afraid.

No kind of diet or appetite suppressor - which could further damage your health - is going to make you lose weight. Those are for people who have fat. I very much doubt if you have fat. You have water weight. That's what we hypos get. And, you're right, it is down to low T3.

And, no, I wouldn't think you stupid for buying T3 on internet - many, many, many of us do that. Just don't buy if from weight-training sites. I'm sure someone who knows will send you the address of a reputable site by pm.

Don't be afraid. Your doctor has been educated by the sales rep of a maker of T4 who doesn't want you to take T3, because it will make you feel better and reduce your symptoms. But if T3 were dangerous, we'd all be dead! Because the body makes T3 itself. If you really want that endo referral, you'll have to put your foot down. It isn't up to your doctor to dictate what you can and can't take. She is just there to advise. You must make your own choices.

I am horrified that she sanctions dangerous appetite suppressors, but doesn't want you to take life-giving T3. As the French say, we're walking on our heads!!!

Hugs, Grey

Bonnie2014 profile image
Bonnie2014 in reply to greygoose

I'm not afraid now after talking to you all and am taking things into my own hands as it sounds like so many of you do too. There's no point feeling awful if you don't have to. My doctor didn't prescribe the appetite suppressants, that was me being very naughty. I took them as a final test to see if cutting calories would work, but it didn't so I'm now 99 percent sure that it's all thyroid related.

Thanks again for your help and tips.

greygoose profile image
greygoose in reply to Bonnie2014

It's a pleasure. :D

Partiallythere profile image
Partiallythere

I take t3 - buy it online. I also take t4 through my gp. Happy to provide website info if you're interested. It's brilliant. I can now eat a sandwich and not gain 2lbs. I'm still not my ideal weight but my efforts are being realised, slowly but surely :)

Bonnie2014 profile image
Bonnie2014 in reply to Partiallythere

Would love you to pm me. thanks so much.

stellastar69 profile image
stellastar69 in reply to Partiallythere

hi partially there, these doctors and chemists pretend to know nothing, iask them if u can mix levo and cetamol together, and they say always i dont know, and one said not really.can u really mix 2 hormones T3 AND T4 together ?what can i do no money for private doctor, just feel like im dying, and no help from anyone.To think its maby possible with a change from levo as i think im reacting to it, or another one or 2 more hormones, might make me quite good again.

Hypomom profile image
Hypomom

T3 worked for me in the beginning...then the weight piled on.

My ft3 always stayed in the upper part of range, never hyper.

T3 caused me to have insulin resistance.

Please Google it if you need more information.

Cytomel can mess with blood sugars.

I am no longer taking it, only on 112mcg Eltroxin (T4) and losing weight nicely.

Not every "body" can handle that Cytomel.

Thyroidgone profile image
Thyroidgone in reply to Hypomom

That's what's been happening to me ....I can I find more on this ?? Please ....I'm in a different boat then most ...I live in an area where most NP's realize the benefit of T3 and stand firm it's the answer but I've always felt worse on their insisting to raise my levels of T3...at first I sought them out because I read and about the amazing benefits of adding T3 I wanted to reap the additional rewards of t4/the combo but it's not working quite as I imagined .... especially as they increased me higher over the years various practioners all the same and the weight problem came about and so on ....now I'm so confused because everyone insists on the T3....and won't work trying another route.... Armour was a disaster for me as well ....and I've done all the higher calorie ...low calorie..fat...no fat ... high protein.. low card ...vegatarian ( I think I was the only heavy vegitaian on the planet ! Everyone else looks so nice and slim ! 😆 I do know I can't have a lick of sugar or I suffer horribly ! I And sugar sensitivity even fruits has been a problem for quite sometime....I've been trying the t3 for over 17 yrs I believe.....

This is the first time anyone has explained what you touched on to me ! Maybe this is my issue as well ?????

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