Upset about my weightloss!

I didn't think that would be something I would ever say! Since my GP agreed to let me try a T3/T4 combination about three weeks ago I have started losing weight without even trying. I have a lot of abdominal fat, I've looked about eight months pregnant for years. It's melting away so quickly that I'm pretty certain I will end up with loose skin.

Also my GP has been badgering me to lose weight for years, whatever the complaint - even a stiff neck - I was told it would all be better if I just lost weight. I really struggled to lose any and I suspected it was due to my underactive thyroid, now I'm starting to see proof of that. I've actually been eating quite badly this month, lots of pizza, and I'm still losing weight. I feel angry at all those years when I was shuffling about, only barely functioning and being told that my TSH results were perfect!

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  • I can completely understand where you are coming from!

    I was originally on t3, all those years ago, and lost all my hypothyroid weight and was very well. When I was switched to levo because 'everyone takes this now', I starting gaining weight and feeling unwell again. I gained over 5 stone in all. I was also told that I was feeling tired and all the rest of it because I needed to lose weight. I knew what it really was though and knew for definite when I found Thyroid UK.

    I have since tried various supplements and NDT and saw improvements in my health but no weight loss. As I couldn't get to optimum health on NDT I started replacing some of it with t3. Each time I replaced part of it, I noticed an improvement in my health but only a couple of pounds weight loss in a couple of months. I recently started taking t3 only. I was on 75mcg and feeling much better being on t3 only, but still not quite there and no weight loss. Last week I upped my dose to 100mcg and I am feeling noticeably better. I have also lost a couple of pounds! I suspect it is mainly water, given how often I was visiting the loo, lol.

    I too feel angry that I was made to feel it was my fault and struggled for years to even maintain my weight. However, I am more angry that I was denied good health and even good mental health! I have come to terms with it now and try not to be angry but I am still a little grumpy about it :D

    I'm very pleased you are feeling better and that you can now prove to your doctor that it was your thyroid all along. Try not to let the anger ruin the pride you should be feeling, knowing you were right all along and, above all, don't let it spoil your new found good health! :)

    Carolyn x

  • You're right, thank you! That is definitely a plus, if my weight continues to fall over the next two months my GP is going to see a noticeably slimmer me when my next tests come around and will be more likely to keep prescribing it for me.

    I'm a bit nervous at how fast my tummy seems to be shrinking, I dieted for eight weeks earlier this year and didn't see these results, but I suppose it will slow as I adjust to the new medication. I shouldn't be stressing really, it's great to get clear clues that this is working! Oh, and my eyesight is suddenly much sharper too, which I'm guessing is also a T3 benefit :)

  • I noticed the eyesight thing too :)

    Some of the weight may well be water. Oedema is common with hypothyroidism. However, if it is coming off too quickly, it my be that you need a slightly smaller dose.

    So glad you are feeling better :)

  • Maybe it could be that? I wasn't going to say, because it's probably TMI - but the abdominal fat I have was solid, now it's almost the same size, but a squishy texture like blancmange (that is probably TMI sorry!) It feels like the fat is going, but my skin isn't going with it. That makes me a bit anxious. I hope it is water loss in a way, at least it will slow soon! My swollen ankles are gone too, so that could be what it is.

  • Hi can you tell u what dose of t3 and t4 you are on pls ?

  • Hi Carolyn

    Haven't been on the site for a while, but you and I seem to follow each other with the route we are taking with all this. I am now on T3 only aswell. I had trouble stabilising Erfa and then Erfa and T3 combination and eventually went onto T3 only. On Erfa I lost a lot of weight and actually it was great for me. Once I introduced T3 that stopped and now on T3 only I have gained a little, but am hopeful this will regulate itself once I am fully dosed which I think I am very close to.

    To date I am on 32.5mcg a day overall having followed Paul Robinsons book to the letter with regards to dosing and timing. Thank goodness for Paul is all I can say because my GP didn't have a clue and my endo whilst very good isn't available all the time for advice and to be honest I don't think she would have given the same advice as Paul. The circadian method in particular has been a godsend for me and without it I would still be very poorly indeed. I can understand GentleOrange's frustration with the weight problem. It is distressing and I feel upset really because I am now putting on a few pounds, but I do believe it is a case of persevering and getting things right with the meds.

    Also GentleOrange I have had serious stiff neck problems and TMJ in my face for over two years (including 6mths prior to being diagnosed with hypothyroidism) and have had MRI scans and seen numerous consultants to no avail. I am now on T3 only, plus Vit D and it's all gone completely. I get the occasional slight pain, but really nothing like it was. (It didn't improve at all when taking any T4 or T4/T3 combination). I don't know whether it is the T3 only or the Vit D, but one or both has sorted it. Amazing really because my blood tests for thyroid have always been 'normal' hence my long battle with getting this condition diagnosed and my Vit D according to my GP was 'normal'. Fortunately my endo prescribed T3 regardless of the blood tests and told me to get straight on some Vit D supplements!

    Hope any of this helps.

    :)

  • Carolyn, why did they change you to T4 from T3? If it does not work, why is it not being changed back? Are there any long term T3 effects (or were there for you)?

  • I was very well on T3. This was several years ago. I was then told that I had to change to T4 because that's what everyone takes and it was better. I didn't really know what this meant for me personally at the time. I know my GP didn't want to switch me to t4 but he told me he had to. He left the practise shortly after. I don't think he liked having his hands tied so much by the senior partners :(

    I started feeling unwell again quite quickly but not too bad. Still they wouldn't let me change back telling me my 'relapse' was due to other factors and gave me antidepressants and so on instead. Then they tried to tell me that it was because I had young children. They wouldn't even entertain the idea it was down to the T4.

    When I found Thyroid UK, that was a turning point for me. I asked my new GP about t3 and he said he was happy to give it a try. Unfortunately the senior partners weren't having any of it. I have to self-medicate now but I am well and my GP is quite supportive :)

    I had no adverse effects from t3 whatsoever. In fact I felt great.

    Carolyn x

  • forgive me for being ignorant but what is T3/T4?i look pregnant and my stomach is getting bigger every day.i have cut out foods -wheat etc and made no difference. have thyroid symptoms but dr doesn't agree with me cos bloods were normal.has mine being a thyroid prob all along?

  • I'm still very much a learner with all this, there are much better qualified people on the board but T4 is levothyroxine, the usual medication for people in the UK who are diagnosed hypothyroid. It is supposed to convert to T3 in the body but it didn't work well for me, so now I'm trying the direct form of T3 (liothyronine) which is giving much better results.

    Did your GP give you your TSH results? Mine were classified as normal at 3.2, but people here will tell you that it needs to be as close to zero as possible, and probably under one for you to feel well. You can always contact the surgery and ask for the results if you didn't get them.

  • I got copies of my bloods fro the year and have TSH results btu will have to look tomorrow and see what they are .they ddi show normal btu I cannot remember off hand what tehy actually were.so will post tomorrow,.

  • There are some very experienced people on this board, Carolyn and others, so I'm sure they will help you work out if your thyroid could be to blame. I think the majority of GPs tend to be quite ignorant about thryoid issues, what looks 'normal' to them could still be a very real problem for you!

  • Hi, I too have recently been prescribed a T3/T4 combo and have noticed a massive improvement in symptoms.

    But the only negative is that I have been gaining weight, am wondering if I am either taking it at the wrong time or too small a dose. As I was previously on 150mcg Levo not sure what the T3 amount should be.

    Can you offer some suggestions please :-)

  • That's strange Brown as I had my medication changed two months ago from 125 T4 to 100 T4 and 10 T3, but I have also gained a few pounds.

  • I have gained weight on the same combo.I am feeling better in myself but oh how I wish I could loose some weight.x

  • I can tell you what I do. I'm on 25mcg T3, and 50mcg T4 (supposed to be 75mcg but I reduced it.)

    First thing, I split my T3 tablet and take half of it with a glass of water, then wait an hour before breakfast (avoiding calcium/iron when I do eat.)

    I take my second dose at 3pm, so stop eating 2 hours before, and drink a big glass of water with the second part of the tablet, and again wait an hour before eating.

    Then I stop eating three hours before bed and take my levo medication last thing.

    I also take several supplements - Jarrows B12 and B complex in the morning, Nature's Best cod liver oil and fish oil a bit later, and timed halfway between my 2nd T3 and the T4 I take magnesium citrate, vitamin d, and a spatone iron sachet in orange juice.

    Last little bit of my regime is the snack I have before I stop eating in prep for my afternoon meds - a teaspoon of 12+ Manuka Honey, followed by 2-3 brazil nuts, followed by a tbsp of extra virgin coconut oil. I take another 2 tbsps coconut oil a day if I remember, and one carrot a day if I remember!

  • Hello Gentle Orange, this regime sounds as if you have no time for a life! In between all the time slots to do something to stay well, do you? lol I am just kidding, because I see myself here too! Taking Vitd3, CoQ10, C, Primrose oil, Mega vits, ginsing,B12,6, etc and so on, daily, trying to fit them all in, right times, right eating! It can get to be a bit chaotic! I have an appointment this week with a new Endo, please he knows what to do! Or will listen to me, as I am going to ask for t3, which my other and my GP would not give me) and I am sure everything you do is making you feel better. I have tons of supplements as well, but whether they are the right amounts, the right ones is anyone's guess. So far my stomach is also so big, cant see my feet either! Want to be well, so thank you for sharing these tips. They may very well be my next port of call, esp. taking the Levo at night. Many other sites report taking Levo near coffee at breakfast is just no good to do, interrupts the Levo, but I can not wait an hour to drink my coffee...so this may just be the solution. Thanks for the sharing of your health routine, if it works, great, we need solutions that work! :-)

  • I know! I have to be very organised now and clock watch a bit but I am feeling better for it. I would like to take Q10, ginseng and EPO too but I don't think I can face anymore schedule fiddling right now! Taking levo at night has turned out to be quite easy, my only issue is waking up in the morning desperate for the loo because of the glass of water I drank before bedtime, but it doesn't affect my sleep at all, I'm sleeping really well now. I hope it works for you!

  • Hi gentleorange, I understood that with t3 you can take it with water but its absorption isn't affected by other foods in the same way as levothyroxine is. I certainly take mine with any food and don't seem to have any issues with this. I would be interested to know if this is true, especially as many people take small, split doses during the day & this would be easier for you.

    Mary

  • I to also split my dose of 20mcg T3. The first part at 7am and the second one at 12noon. But I only leave an after the tablet before having lunch.

    On the alternate days that I take 100mcg of Levo this too is before bed. I had to reduce my T4 From 100mcg a day to alternate as I was becoming too breathless.

    It just seems strange that it is the best I have felt but am still gaining weight!!

  • have spoken to a couple of people and read articles that drs are not up on thyroid issues or lupus symptoms?

  • Yes, do post them and perhaps we can help :) 'Normal' isn't necessarily normal for you.

    If you have other blood tests, such as RBC, iron, ferritin, folate, B12 etc that will be even more helpful. If you haven't had these done, it might be worth asking your doctor to do them.

  • here goes with my bloods results(3rd attempt)

    perinuclear ANCA neg

    cytoplasmic ANCA neg

    nuclear antibody neg

    LIU 29(range 0-65) neg

    TSH 3.2 (0.35-3.5)euthyroid picture(including satisafactory thyroxine replacement)

    U&E july 2013 feb 2013

    sodium 144(133-146) 141

    potassium 4.1(3.5-5.3) 4.8

    urea 8.3(2.5-7.8) 5.5

    creatinine 80(55-95) 80

    glucose 4.3

    CRP 3 (<5)

    EGFR 80(slight dec in egfr(not corrected fro ethnicity) 80

    full blood count-wont list but all within ranges??

    CA125 38 >35(may 2013)

    CA125 48 >35(feb 2013)

    feb 2013

    bilirubin 5 <21

    Alk phosphatase 96 (30-130)

    ALt 19(<40)

    totalprotein 72 (60-80)

    albumin 42 (35-50)

    globulin 30 (20-35)

    GGT 33 < 45

    EGFR 80

    PHEW!!!!!!

  • I think your TSH is too high. Many people feel best with it below 1. You would probably benefit from an increase in your thyroxine dose :)

  • I don't take thyroxine????

  • Sorry. The blood test results confused me where it said 'satisfactory thyroxine replacement'. Your TSH is right near the top of the range. Next time it is tested, make sure you do it first thing in the morning when your TSH is highest. You are more likely to get a T4 test and a diagnosis that way. I think you are borderline hypothyroid but I'm not a doctor.

    It would be best if you posted your own question because the person who posted this originally will be getting notifications every time we post on here and you will also get more responses and more help because it will be seen better if you post your own question :)

    I hope you get sorted out soon! This is probably the most frustrating part - convincing your doctor you have a thyroid problem.

    Carolyn x

  • hello Carolyn

    I have no idea why it says "thyroxine replacement"as this is the first TSH test ive had done.somethign to get myDR to explain.??my appt fro the blood test was at in the mornign and report says

    received AT 14.20,REPORTED TODR AT 16.33.

    still have the same symptoms-swelling and tightness etc in neck.

  • It really does sound like your thyroid. The higher your TSH, the lower your thyroid hormone levels and the more under active your thyroid is.

  • I think that "as close to zero as possible" is something that some people find - my last one was 1.6 and I was feeling pretty good. It is what is right for the individual - and that varies.

    Rod

  • I agree with Rod; as close to zero as possible is not really a 'recommended' level. Some experts say TSH should be in the bottom part of the range (i.e below 1, or 0.5) and I tend to agree with them for the most part. Although many people find this is true for them, there are some people who actually feel better with their TSH somewhere between 1 and 2. For me, my TSH needs to be a little below range but it is still detectable at 0.14 (last two tests). Some people do need their TSH to be undetectable but this is not what people should necessarily be aiming for. Dosing should be by symptoms which does result in a low TSH for some people and at least below 1 for many. For some, their TSH will be above 1 when they feel they are optimally treated and for some it will be undetectable :)

    You are very right in that many doctors try to keep TSH too high and, with such high TSH values, patients often feel very unwell :(

  • Hi GentleOrange. Just a small point here - the TSH is not an accurate test and can vary so much. It doesn't need to be under one - it needs to be at whatever figure is 'optimal' for that individual and this can vary enormously. Some people do well at a higher level - I'm very well at 2.11 and very sensitive to levo so any lower and I would begin to feel very unwell.

    I think it may depend on wether people are able to convert T4 to T3. It could be that people who need a very low TSH are not good converters, or have other medical issues going on. It is simply not true to say that 'it needs to be as close to zero as possible'. One individual may need this level, but someone else may become hyper if they were at this level. We are all so different.

  • so happy for you with your weight loss, i too look like i am 8 months pregnant, only had it since january this year and it feels awful, in fact i stay in as much as possible now as i look so bad,i hope soon that my medication works , i stay on diet but nothing works, so glad to hear a happy story like yours xx

  • do you think my gp would let me try this treatment? the t3/t4 is it open to all to ask for this, i am on 75 mg levo

  • Have you been given your blood test results? It could be that you need something more.

  • my last results were tsh 4.61mn/l(0.27-4.2)...........t4 is 14pmol/l(10-24) he said i am normal now but still feel like s..t

  • TSH 4.61? That's high to me! I still felt awful when I was just over 2. Maybe he would consider upping you to 100mcg levo to see how you feel on that?

  • Given how high your TSH is, if it were me, I would ask for a higher dose of levothyroxine first. It may just be that the dose is currently too low.

  • Hi all, I've been taking levothyroxine 150mg for 15 years, been putting on weight steadily but am very interested to read about anbuna was saying about cutting out foods like wheat etc, basically there isn't a food I can't eat without looking 8 months pregnant by the time I've finished, it is embarrassing. The doctor says its ibs but maybe it's not then. Might speak to him about trying t3.

  • Some people do not gain weight when they are on optimum medication but many do and this is a link to Dr Lowe re weight gain.

    web.archive.org/web/2010112...

  • hello emmajayne

    my dr says mine is IBS because of bloating alone but i disagree cos have no problem s with constipation or diarrheoa.he said "you don't have to".is you weight gain general or just stomach?

  • Hi, my weight gain is mainly round my stomach, although round my face as well it's so frustrating.it looks more like bloating. I do regular exercise so have toned arms and legs but my stomach just doesn't change shape. Xx

  • How do you get T3? I asked my GP about it and he wasn't interested. I'm steadily gaining weight on 125mcg levo after an initial weight loss when I was put up to 125. How do I go about getting done T3?

  • I told my doctor I was about to order T3 from a Mexican pharmacy site, I took the page printout and showed it to him. He told me I would either get all my help from the NHS or none of it and wrote out an NHS prescription. So they can do it. My GP is the senior partner at the practise, I don't know if that makes a difference in terms of him being able to use his discretion?

  • As far as I am aware Alit, the majority of people are prescribed T3 by an Endocrinologist so persuading your Doctor for a referral is your first port of call. I believe very few Gps will or can prescribe this hormone, my Doctor insisted he could not prescribe it.

  • Hi Alit, yes mine was prescribed through an endo, doctor wouldn't prescribe it on her own, didn't know how to monitor it.

  • hi the 'G O' , I don't know if this may help , but I will try , last year [ march 2012 ] my lady was finally found to have a hyperactive thyroid , after 3 hospital admissions and losing approx. 3.5 stone ---on a normal diet ---- her appearance resembled someone suffering from bullima ---- after the correct treatment which amongst all of this she contracted a plural effusion [ 9 litres of fluid in her right lung ] which then had to be operated on ==== successfully ==== during this time her thyroid problem had to be artificially kept high ==== we have a brilliant endo [ at barts ] a brilliant consultant at moorfields [ for TED ] and an absolutely superb gp ===that ALL ARE ' SINGING FROM THE SAME SONGSHEET ' and in constant contact with each other for the better of 'THE PATIENT' ----- unfortunately my lady has 'gone the other way at the moment and put on over 3 stone above her normal weight .... not a major problem with us at the moment because she has now been found to have a hypoactive thyroid .....please be assured that your weight --- as I can testify to --- IS NOT NESSISARILY DUE TO EATING/DRINKING/LIFESTILE --- it could very well be due to thyroid/meds/condition and all the combinations of them of which YOU HAVE NO CONTROL OVER.....its more important that you have good people around you to support , help and most important EMPATHISE and UNDERSTAND what is happening ------ something that this site has given me and my lady in buckets ---- LoL alan

  • I agree. When first diagnosed borderline many years ago my weight was stable and healthy but I had been very active. This all stopped due to lack of energy, felt very ill. My TSH then went from borderline to "normal" and I did feel a bit better. The only TSH result I have from the normal days was 4. something. I was careful what I ate and could lose 7 pounds on a two week detox which I did roughly annually or before holidays..My weight remained healthy.

    I then lost alot of weight for no apparent reason, over a stone over 9 months.I also felt awful, no energy. Blood tests were done and type 2 diabetes was suspected but a repeat test showed I hadn't got it. I was eating family packs of nuts to try to gain weight.I tested my own blood sugar which just seemed excitable. Strongly suspect insuline resistance but I ate very well and just tweaked to a low GI diet. My weight and energy levelled out and for the pre and post menopause years I find it difficult to lose weight and get tired far more easily. For about the last 5 years I've been in the overweight category on an ideal weight chart.

    My weight hasn't changed. I actually found losing weight very scary and strongly suspect that I've been hyper as well as hypo. I could reason that lack of activity has contributed towards weight gain and this now could be true, combined with the menopause. It doesn't explain however the weight loss phase when I literally worked and went to bed.

  • Hiya ,just read your blog and I was hoping you could help me , I am due to see a endo next month as I am convinced I am under active. I am overweight and cannot loose the weight,I defo think I have this problem.can you tell me the name of yr meds that are helping you so much,if you could email me with the names I would so appreciate that sj.cook@icloud.com Thank you x

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