T3, cytomel and weight issues

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.

28 Replies

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  • 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?

  • 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

  • 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.

  • 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

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

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

  • 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.

  • 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.

  • 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.

  • 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.

  • 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.

  • 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.

  • 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

  • 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.

  • 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.

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

  • 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.

  • 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

  • Hi, everything that you've said makes sense.

    Thanks for your help.

  • :)

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

  • You're doin it right :):)

  • Thanks :)

  • 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

  • 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.

  • It's a pleasure. :D

  • 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 :)

  • Would love you to pm me. thanks so much.

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