Hi. I had a TT in April 2014. I’ve been on 125mg levothyroxine since the day of my surgery. Every blood test they say has come back fine and I don’t need my medication changing. I have gained over 2 stone. My hair has gone so thin you can see my scalp. I’m 32 and this is depressing me 😔
I have tried diets, exercise (but I literally have no energy) Healthy eating. I feel totally helpless. People have commented on my weight and it is making me depressed. And omg the tiredness! Getting called lazy because I am falling asleep during the day. It’s a vicious circle and it’s depressing. Please can anyone offer any advice? I read so many posts on weight gain after TT but not many solutions. Thankyou ☺️
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Ajhawkes214
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First thing you need to do is get hold or your results. You really cannot trust a doctor when they say you don't need to change your dose. You need to know if they're doing all the right tests, and what the results and ranges are. Sounds to me as if you're either under-medicated or not converting very well.
Yes get copies of your results and post them here. Also just to add diets and low calories often have the opposite effect with thyroid peeps as you need your food and nutrition to keep your metabolism up so work on eating healthily and eating a good amount - certainly no less than 1500 calories and should be a bit more. I start piling on weight if I stop eating enough.
Also get your nutritional levels looked at especially Vit D, Iron, B12 and folate.
It's a pity the 'experts' don't read research and simply look at the TSH and T4.
Levothyroxine can cause weight gain when the patient isn't on an optimum level. Optimum means we feel well and have no clinical symptoms. We have to read, learn and become our own experts for relieving our symptoms. That's supposed to be the aim - no symptoms and feel well.
We have to read and learn ourselves as the 'professionals' seem to have no clue and state 'normal' 'normal' 'normal' when we have blood tests.
The fact is that if we are hypothyroid we don't want 'normal'. We want optimal and optimal means relief of all disabling clinical symptoms and we feel well.
We come to realise the 'experts' are not experts at all as we, the patient, don't heal.
First thing to do is ask for a new blood - they wont do all - but those not done you can get private through one of the two labs recommended.
Blood tests have always to be at the very earliest (TSH drops throughout the day) fasting (you can drink water) and allow a gap of 24 hours between last dose of levo and test and take afterwards. The TSH drops throughout the day and can mean the difference between getting an increase or not.
Request:
TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.
Get a print-out each time for your own records and post them if you have a query.
GP should test B12, Vit D, iron, ferritin and folate.
Make sure you are well-hydrated a couple of days before test, and hands/arms warm for blood draw if you decide to get a private one and earliest blood draw etc. They are home pin-prick tests or they can arrange for you.
Blue Horizon and Medichecks are the labs and Medichecks has a special offer of some sort every Thursday.
Thankyou. You have been so helpful. Tomorrow morning I am going to book another blood test. Hopefully I can have it done this week and get the results back pretty sharpish. That way, I can post them on here. I have never seen any results before. They just phone me and tell me they are ‘normal’ and that’s it.
Thankyou again for your help and advise. That link you sent was brilliant 👌🏼
'normal' to doctors means we're on sufficient. They don't seem to care that we are at the bottom of 'normal' and not 'optimal' near the top for Free T4 and Free T3 in particular as they don't test these two important hormones. Read on the following about the Frees:-
Just to reinterate all blood tests for thyroid hormones have to be at the very earliest, fasting (you can drink water) and allow a 24 hour gap between dose and test and take afterwards. This helps keep the TSH at its highest as doctors seem to only look at the TSH which isn't from the thyroid gland anyway.
Hi, I signed up to Health Unlocked one week ago ! and OMG, I can relate so well to what your saying, I too had a TT in 2016, and I haven't felt well ever since. I'm 63 and put my tiredness down to age and being overweight. I've always been overweight, My blood results are always 'normal' my daily dose is 100mg, and GP won't increase it as I have diastolic dysfunction(heart) I've tried to lose weight, gently excerise, feel awful and so fatigued all the time. I wake in the morning like I'm coming out of a coma!!
Thank you greygoose, your information is superb, I was trying to sort myself out and this site I feel will now be my lifeline!!
Hi. You sound like you’re going through a tough time like many of us. I’ve always found when I’ve searched anything to do with TT a lot of people’s post are from the USA. Many solutions suggested are all American prescribed and we don’t have that access to the type of medication in the UK.
I felt so relieved when I came across this site. Everyone is so helpful and informative. It really gives you some peace of mind that there is light at the end of the tunnel x
Does the doctor know that T3 is the only Active Thyroid Hormone and levothyroxine T4 is inactive. We have to have sufficient T3 as we have millions of T3 receptor cells in our body - brain and heart contain the most. They need optimum T3 which is either converted from levothyroxine (if on optimum dose) or T3 added to T4 and this is difficult at present as they withdrew T3 from being prescribed a few months ago but there is a case in the Lords at present. The Lords are investigating why those who need it aren't prescribed due to extortionate pricing. up by 6,000% or has been withdrawn without notice leaving panic amongst patients. Bleeding the NHS?
Getting excited now, regarding your info, and looking forward to seeing my new blood results, and will request hardcopies of previous ones! I am a lady on a mission!!
Hi, I had problems with my heart which improved significantly once diagnosed hypothyroid and started on Levo. I had a resting heart rate of 44 and my blood pressure was dropping to 70/40. With each increase in Levo I got better and better. My heart rate is now 67 - 76 and my blood pressure is 120/70.
It was a slow process because my Doctor kept telling me I was back in the normal range and refused to increase my medication. I was started on 25 mcg and I’m now on 175 mcg and felling really good compared to how I was.
Google diastolic dysfunction and T3 you will find some interesting information you might want to relay to your GP and Consultant! 💐💐
Thanks, I'll do that, not under any consultant, there's nothing they can do ( or haven't said) about my diastolic dysfunction, will definately check it out!
I am more than relieved about this website, more elation than anything! I too am going to book a blood test tomorrow, and thanks for the info Shaws on timings etc, I will post my results on here if that's OK with everyone! I've already decided to ask GP for printout of results, and will request that a note be left on GP system for a hardcopy each test! I'm going to start filing all info, so I can keep a tally on my results. Being here and talking to you all has given me drive, to find out exactly what is happening to my body and what can I do to fix it myself. I do have a lovely GP and I know from him that both my Potassium and Calcium could be better, and eating 6 bananas a day does nothing lol x I know nothing about T3's or T4's just realising how naive I am, hopefully not for long!
I’ve just come from an apt with my friend who had her thyroid removed by my private ent chap. ( I pay into a reasonable scheme just in case I need a new knee etc) Her tsh was suppressed as it’s supposed to be and her gp kept reducing her t4. She seemed well on 200mcg but has started to get tired.
The Ent who did the op flew into a rage picked up the phone and blasted her gp. Upshot increases t4 back to 200 and says he’ll monitor but unless her temperature goes v high she never has bloods done at doctors surgery. She can go to Ent anytime but he’s not looking for a reduction in her meds in her life time. His parting shot to the gp was so what if a tsh is suppressed she’ll not die!!
He could see I was trying my best not to laugh and as I’ve had my tonsils out broken my nose several times and he knows I too have lots of issues with doctors , turned to me and said- and don’t you take any crap with doses either.
Best half an hour in a while.
You need to post your blood test results on here with the ranges The only time I put on weight was after my thyroid was removed and I was put on Levo I then joined this site and now self medicate with NDT I am never overweight and eat just a healthy diet
I have never had any results. Just confirmation my levels were ‘normal’
I intend to book another blood test tomorrow. And as soon as I have the test and the results. I will post them.
What was your dosage on Levo before you changed? When you say you self medicate. How did you know what dosage to take and where can you purchase the NDT from?
I have always had a fear of coming off my Levo and self medicating. My sister is a dispensary nurse in a pharmacy and has always told me that it’s dangerous to come off levo or miss them. I suppose that’s just her being over cautious and protective. I just know I can’t go on living like this. I’m not overweight. I weigh nearly 12 stone. When I’ve always been a healthy 8st 4. I am only small too. It’s the tiredness that kills me. The weight gain is just frustrating. My diet has never changed. Unless intended to, to try and lose weight. And even then I couldn’t shift. Even exercise takes it out of me. Half an hour of light exercise and I need to sleep for nearly 2 hours just to recover from the exhaustion. I have 2 children. Both with very active social lives. Sometimes I physically can’t keep up because the thought of getting ready and driving to a destination where they need to be is exhausting in itself. I’d love more information on this self medicating though x
Hi before I had my thyroid removed in 2015 I had never been on any medication and never overweight I was only on Levo for 7/8 months various doses but gained weight and felt ill then I joined this site. I took a Blue horizon thyroid plus 11 test and posted the results and waited for answers. I found an online supplier of NDT and asked how and when I should dose. I am 72 years old and now feel great it did about 18 months to sort out my dose. I also have a sister who was a sister nurse she still takes Levo and feels ill most of the time it depends on the person but I like to feel well.
Ask the doctor for the test results. There is details of the correct levels on the internet and that way you can see if they are truly giving you the right dosage
I put on over four and a half stone in five months before they found out it was my thyroid that was causing my body to shut down. When I was put on thyroxine I felt great, but after a week or so I was struggling again. Eventually my doctor (not the specialist at the hospital) realised I wasn’t able to convert t4 into t3. I don’t know how much knowledge you have of the difference but in case you don’t know, t4 (thyroxine) is like a filing cabinet holding all the papers until you need them. When your body needs to do anything with your muscles etc, it takes some of the ‘paperwork’ t4 and converts it into t3. We need t3 to make our bodies work.
It is much more expensive to be given t3 (liothyronine) so doctors try to not prescribe it. I was lucky and for a long while I just had t3. After a while they cut back a bit on the t3 and gave me t4 and now I can convert to a certain degree so I am given a mixture to the two.
You need to ask for blood tests on T4, T3 and your TSH levels and a copy of all the tests done up until now. It maybe that you need a push of t3 to get your body to start functioning properly. It is your right to get printouts of these test results. That way you can get a picture of what your body is doing. Sorry for the length of this answer, but I thought if you didn’t know about T3 and T4 they may try and get out of a proper diagnosis of what you need.
I know how you feel. I had another thyroidectomy in march this year. Before it i was in and around 60kg and losing weight. I was really hypo with a tsh of 72.12! And now weigh 72kg!! Nothing fits me even work trousers and the boobs where the hell did they come from lol i now see a personal trainer every week see how that goes but cant seem to shift weight. Im not eating different to before surgery and my hair is falling out too. 2 washes during the week and the plug hole is full not to mention my comb. Im on 100mcg thyroxine and blood test due this week.
I was like that too about the gym never been in my life lol but im back to work in a bar and sometimes the customer critique gets to you. When i was on 150mcg i was wired!! Not tired at all but sadly no weight loss. Good luck it gets a bit better hope you dont have to suffer 11yrs like i did.
Sorry to hear about your problems. Sounds very familiar - think most of us have these at some point after a TT. I definitely did. Had mine 15 years ago and it took around 5, yes really!, years or so to adjust myself. I had a lot of problems with weight gain and exhaustion, literally dragging myself through the day. Had 3 kids under 10 at the time and it was bldy awful! Don't know if you've been checked out for iron or your adrenals/stress etc. I finally got some joy??! when my usual Doctor was away and I saw a lovely Greek locum! He tested me for Everything and when I went back the following week for my results put me up to 150 mcg Thyroxine and said I had the lowest iron he'd ever seen so put me on tabs for that too! Felt like a different person a week later! Anyway, sorry to drone on. To cut a long story short, all ok for next 7/8 years or so then had a heart palpitations scare and they cut me down to 125 again. I knew it wasn't that but they have kept insisting on me going no higher than 125. Is that the upper limit that 'they' are told to give? I don't know but no matter what I said, my Doc would not go back to 150 even for a short trial. I have ended up buying Naturethroid online, and going to see a herbalist instead. My adrenals are totally shot, mainly from stress and pushing myself too hard. Not taking Thyroxine at all now, did a lot of research and studying up on it and lots of things about it seem a bit suspect to me anyway now. I don't know, nothing's perfect is it, but I definitely think my usual GPs at local practice just follow a script and only allowed to prescribe 'certain' tablets in certain amounts. Anyway, that's my experience. I hope you can get some help and start to feel better soon - I will be hoping and praying for you! Good luck and take care x
Hi. Thankyou for your message. I have just been to see my doctor this morning- not my usual. And doesn’t have a clue. He has increased my levothyroxine to 150mg too. He said for me to have a few weeks taking the new dose and book my bloods for in a month or so. The receptionist offered me a blood test there and then. So I took the appointment. No way was I waiting another month. This has gone on for years and I am sick of being fobbed off by supposed ’proffessionals` that haven’t a clue when it comes to thyroids. Did you by any chance lose any of the weight you had gained when they increased your intake? X
Hi there! I totally lost weight on the 150! I had so much more energy, though to be fair it could have been the iron too. It made such a massive difference. Sorry you've been so low - I used to be in tears about it all on a regular basis. Such a horrible feeling to have no energy at all and nothing fits! I hope you start noticing the difference soon, but if not, and its not your iron etc, I would start reading up on adrenal burn out/exhaustion. If you've had a lot of stress over the last few years it's def a possibility. Wish you lots of luck, keep your chin up chick! All the best x
PS One thing forgot to mention, the timing of taking the Thyroxine is v important, I discovered very late on. Don't take them with anything other than water, for at least an hour either side. Def NO milk, tea, coffee, food etc. Think this is V important! Lot of people I know take them early hours of the morn - they set alarm for it then go back to sleep! Say it's then got time to kick in before you get up! Or half the dose early hours, then other afternoon. I don't know but maybe give it a try? Good luck x
That’s brilliant advice regarding what time to take the medication. I have broken sleep most nights anyway. Some nights I end up seeing every hour through the night. Maybe it would be wise to keep my medication next to the bed with a bottle of water to take when I wake up in the night. The doctors are testing my iron. I have to go back to the doctors tomorrow to register for my online results. That way I get to see all my test results and order repeat prescriptions. They are testing my iron and B12 and TSH. As soon as I get my results. I will be posting them on here. Thankyou for all your help x
Hi everyone. I’ve had my test results back. The doctor has asked me to have another blood test in 8 weeks as I have an under active thyroid. Obviously hasn’t checked my medical record- because I don’t have a thyroid!
Serum TSH level: 22.24 miu/L (abnormal)
Serum Free T4 level: 12.8 pmol/L
B12 came back fine
Can anyone translate my TSH level and why it is abnormal please?
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