Hi
I have now been on Levothyroxin for over two months and due a blood test @ 3 months to see how my levels are.
What I want to ask is should being on the Levothyroxin help with losing weight. I had lost over a stone and when my doctor started me on levo he said I should lose more weight.
I seem to be putting weight on and I am very tired and not sleeping well.
Is this normal when starting on Levothyroxin 25 mcg daily?
Thanks for any replies
Blood tests should be 6 weeks (or 8 weeks maximum) after starting or changing any Levo dose.
3 months is far too long before testing
25mcg is a tiny dose, you are likely ready for an increase
All thyroid tests should be done as early as possible in morning and fasting and don't take your thyroxine in the 24 hours prior to test. Delay and take straight after blood tests.
Very important to also test for low vitamin D, folate, ferritin and B12. Common for these to be too low (even if in range)
Also need to know if you have high Thyroid antibodies (Hashimoto's)
Thank you for reply.
When I was first put on it my doc gave me a months supply and wanted to see me to see how I was. I actually felt no different and he gave me enough for two months and I am to have blood test done so he will have results when I go to see him. My blood test will be more than thyroid as I have 6 monthly ones for other things and full blood count, cholesterol, liver etc I don't know about B12 but I take prescribed vit. D for osteoporosis and have the level checked yearly by the hospital and they have always been good.
I think I started feeling really tired a couple of weeks back and not sleeping too good, I also find I come over really hot like I used to in menopause and it lasts a while and its not the hot weather type of heat.
I'm fed up with one thing and another health wise and getting old
Do you lose weight on levo?
Weight only resolves if Thyroid correctly treated, so many find the answer is no.
Vitamin d needs to be at least above 70nmol/L and around 100 is better
Extremely common for vitamin D supplements dose to be too low (800iu) and level remains too low
Thyroid patients seem to need more especially if have Hashimotos (high antibodies)
Hashimotos is closely linked to gluten intolerance- which is why important to get antibodies tested
Oh my what a mine field this is and it sounds very complicated
I am curious to see what doc says on next visit
Have just been reading your last thread of two months ago - all 77 replies. Lots of information too 😊
Do ensure the FULL thyroid Profile is tested and not just the TSH. The Levo/T4 tablet you are taking is a storage hormone and needs to convert into T3 - the ACTIVE hormone and needed in every cell of the body. So those two results - FT4 & FT3 are very important tests but the latter rarely done.
Having a GOOD level of T3 is the result you need if you wish to improve weight loss.
If you are still taking PPI's - this could cause fatigue as you may not be absorbing the T4 well. Also your B12 will be low - a result below 500 can be the cause of neurological issues and is also involved in osteoporosis. I gave you a link in the last thread to Dr Myhill and her advice.
How much VitD are you taking ? Also Magnesium needed along with VitK2 MK7 to ensure calcium goes to your bones.
Ferritin and Folate levels are important too. When your GP says normal - he means - in range. However it is where you are in range that is important.
Raised cholesterol is another Hypo symptom.
Hope you soon feel better ....
Thank you but it is so complicated, my head is buzzing.
I was diagnosed with osteoporosis over 5 years ago and having treatment for it.
're the ppi's the osteoporosis doctor said she would prefer if I can have a break from it as it reduces bone density so I understand that.
're cholesterol that was diagnosed at least 10 years ago and I was not extremely over weight and it is due to running in family, even my 28 yr old has it and on stations and she is slim and excercises so that was a shock, but she does have pcos.
Anyway When I see doc next month you could tell me what to ask 're blood test. Thanks for info.
PCOS is linked to Hashimoto's and both are linked to gluten intolerance
High cholesterol is a symptom of being hypothyroid
You might want to look at Thyroid testing for your daughter, especially antibodies
Autoimmune Thyroid (Hashimoto's) very common to be inherited
Hi SlowDragon
Sorry to 'jump in' but is Hashimoto's caused by PCOS or if you have PCOS will you automatically get Hashi? I've had PCOS since I was maybe 16 - although not diagnosed as I had a real fear of needles.
Have been diagnosed with lap fertility problems - Endometriosis which has caused no end of internal problems and now recently diagnosed with Hashimoto due to really high Thyroid antibodies. My ivf clinic stopped my treatment a few days before embryo transfer.
Anyhow, role on a few months. I have been trying really hard to be Gluten Free - and have noticed a considerable difference. No stomach pain, or what I was told were IBS flare ups. I have been put on Levo 25mg which I have been on for maybe 2 weeks now, and I feel absolutely exhausted, and unable to function properly. I felt better without it, but unless my T4 comes down from 4.5 the ivf clinic won't treat me. I can't work with this exhaustion and doing even simple things is just 'finishing me off'. Do you think it could be the 'dose is too low' or my body is not wanting the Levo .... or given a few more weeks this will stop?
Sorry, you sound so 'knowledgeable' and I'm quite new to this. Thanks x
25mcg is tiny starter dose and those that start on this often find similar exhaustion you describe. Usual starting dose is 50mcg unless frail or other issues going on
You either have to stick it out another four weeks before a retest, or go back to GP and ask to increase dose.
Beware different brands of Levo don't always give same results in everyone. So you may prefer to increase by taking 2 x 25mcg, rather than being offered a different brand at 50mcg. A lot of people have reported they don't get on well with Teva brand, but a few prefer it (we're all different!)
With Hashimoto's we tend to suffer poor gut function as well as gluten issues. Leaky gut, low stomach acid and poor absorption leading to low vitamins. So get your vitamin D, folate, B12 and ferritin checked.
When you get results including ranges come back here with new post and members can advise.
Sorry you can't be almost gluten free, it needs to be 100% watch out for hidden gluten in sauces, pickles, etc. Watch out for shared butter, shared toaster (ideally get a new one just for gluten free bread)
Read all labels carefully. Also a good idea to avoid soya including soya lecithin if you can.
M&S are good on GF
I know nothing about PCOS other than from on here, but there is of course masses on goggle
Thanks, I can't put the exhaustion down to anything else except the Levo... or possibly it's in my head. I never felt this 'run down' when I worked full time.
I thought 50mg was a 'starter' but it's my ivf clinic that put me on 25mg because despite seeing 2 GPs they said I was fine and refused to prescribe anything. I have to wait till Oct to have an Endo apt at my hospital. However, my GP has said they'll probably just monitor me and refuse to treat. Bit worried now. If they refuse, I'll have to keep asking my ivf clinic for more prescriptions or ?
Thanks for advise re: sauces. I hadn't thought of that. Gosh, it's in everything. Didn't consider the toaster thing either.
Many thanks for your posts/ help x
Hi Music how are you feeling today?
I'm having a bad day feeling so low and so tired, like you its getting me down.
Unless I have got mixed up did you mention PCOS?
Hope your day has been bearableand even improved.
Lottie😀
Hi Lottie67
I've had a bad day too, to be honest. Have spent all day in bed in considerable pain (monthly AF). Haven't been able to do a thing as too exhausted indoors. Have had tears and just feeling really quite low. I thought these Levo 25 were supposed to make us feel better both physically and mentally.
Totally exhausted. Yes I did mention PCOS as well. I will talk tomorrow. x
Ah sorry to hear that hope you feel a bit better tomorrow. Night night x
Hi Music1 - when you are on a low dose of T4 it can make you feel tired. The feed back system to the Pituitary Gland is saying - ah we have some extra T4 in the blood stream - and so the Pituitary Gland sends out less TSH - Thyroid Stimulating Hormone. So the Thyroid does not push out so much T4 - so after 6 weeks or so when your body has accepted the initial dose you will need to be re-tested and have the dose increased to 50 mcg and so on until your TSH is down to 1 or under.
Don't forget to obtain copies of your results that are legally yours - so you can monitor your progress and post here with information that helps members suggest. I can see you have had lot of good information/advice on your other Post/thread 
For the T4/Levo to work well in the body you need good levels of B12 - Folate - Ferritin - VitD. If the levels are low then that too can make you feel tired. B12 needs to be over 500 - and Folate and Ferritin at mid-range and VitD around 100 for thyroid hormones to work well - that is for the T4 to convert into the Active hormone T3. It is just so sad we have to learn all these tweaks from each other and most of us have had to learn the hard way - myself included !
Really wish you well and success with your plans ......
I am not a Medic - just a Hashimotos Gal with a B12 issue and Crohns
Thanks Marz
This B12, does it come as a vitamin B12 tablet and if so, what dose do I need to take please?
May sound stupid, but are there any foods that would contain all these vitamins you've mentioned?
I hit a really low spot yesterday. I was feel 'run down' when AF comes along, but with these tablets as well, I've felt awful. I nearly called it a day and threw them away.
Thanks for your reply/ advise. It is sad that we have to hear all this advise from each other and the clinics/ GP (in my case anyhow) don't know anything and won't tell us anything.
Sorry to hear you have Hashi and Crohns Do you know how long you've had those or what may have triggered them? Kind Regards x
Hi Hidden - from reading your thread of two months ago I do really appreciate how hard you are finding it all.
Just as an example please click onto my name above and read of my medical journey to wellness - and how at 71 I am now enjoying good health. So lots of amazing doctors and yet no-one spotted the Thyroid issue until I retired to Crete back in 2004. I was 59.
PCOS is so often linked to LOW thyroid - so please ensure your daughter is adequately tested. TSH - FT4 - FT3 and Thyroid Anti-bodies - Anti-TPO and Anti-Tg.
It is not the PPI's in isolation that cause osteoporosis - but the way they block all the absorption of the good things - like vitamins and minerals - that are needed for bone health. As Dr Myhill says - Osteoporosis is a lifestyle condition and needs far more than VitD to correct it. I have asked how much VitD are you taking ?? - is it sufficient ??
In days of old BEFORE Thyroid testing became available in the early 70's - anyone that had raised cholesterol - had their thyroids treated. Statins are a money making exercise and causing so much illness. Statins do NOT help women and people with LOW cholesterol die earlier than people with high Please ask your fab Doc to show you the research that says it will help you. We need cholesterol - the brains is 26% cholesterol - Alzheimers anyone ??
healthunlocked.com/search/p...
The above link takes you to over 500 posts here on the Thyroid UK forum connected to PCOS ...
There are over 4000 posts here on the Forum discussing cholesterol ....
Hi 're PCOS
Hi regarding my daughter's PCOS, she has been thoroughly checked by her gyneacologist. She had a definite cyst and due to its size , contents and how it had grown she was scanned, created and blood test to see if it was connected to her thyroid but she was all clear. Her consultant was very thorough. She had also had a previous thyroid test done by gp and that was clear too. So we know thorough testing was done.
Did your daughter obtain copies of her blood test results from the hospital and the GP ? They are legally hers.
I have been on this forum for six years and have been horrified to read about patients who eventually obtain their results and realise they were not correctly tested. Often just the TSH is tested which tells you very little and is a very small part of the story.
I realise I am lucky to live in Crete - we keep our own medical records so can check and double check what has been tested and more importantly monitor our own progress.
No she did not and we don't challenge doctors over any results unless we were unwell, then of course we would. Her consultant was very thorough and wanted to be certain about her thyroid due to the size and make up of sermons cyst, so I am sure he would have done the correct testing.
I know there can be horror stories but we have faith in our doctors and challenge if need be.
I am stoppingthe ppi as I spoke to my pharmacist about it and I have appts with gp and gastro so will be discussing it with them.
Does it really matter about seeing the paper work if you feel well and healthy?
I would not be demanding from any doctor unless I had cause to. I am not a medical person and seeing numberswritten down would mean nothing to me.
I trust what my doctor tells me and if I have cause for concern I will air it with him.
We are all different
We can have in range "normal" TSH , FT4 & even FT3 but very high thyroidantibodies.
But antibodies are rarely tested.
If you have raised antibodies you do have a thyroidissue.
You just want to find out if your daughter had her antibodies tested, easiestway is to politelyask for copies of recent blood tests
Same appliesfor yourself.
Are you being sarcastic about my fab doc?
Or do you just mistrust all doctors ors?
My cholesterol was worryingly high and on statins has come right down to under 5.
My doctor did explain that statins are supposed to unfur the arteries and therefore reduce the risk of stroke. I was given the information and it was up to me if I took them or not. It was many years ago and who knows without taking them I may have had a stroke or heart attack by now. I have had the dose reduced f on what I started on and my cholesterol levels hav been stable and only rose when I stopped taking them to prove if I needed them and I do. We hav to remember there is good and bad cholesterol I had more bad and so did my daughterand my fab doc explains everything good and bad about drugs and if he knows there are dangerous side effects. He is not a pill pusher and listens to any concernsetc so yes he is fab.
Once I see him with blood results I will ask questions and tell him what I've been told on here.
Lottie😀
Sorry Lottie - but there is no such thing as good and bad cholesterol. It is a chemical and therefore cannot be both good and bad. In fact HDL and LDL are protein carriers that transport cholesterol in and out of the liver. The Good and Bad was created to capture the imagination of the public and scare people. This was explained to us at The Thyroid Conference by Dr Malcolm Kendrick. Check out his websites and books - I have read them both. There is a blog about what really causes heart disease on his website. GP's receive good level of funding points for prescribing certain drugs - which are usually for symptoms rather than the ROOT cause.
Statins do not unfur the arteries - there is far more than just cholesterol in plaque. Homocysteine is a far better marker of heart attack and stroke and yet rarely tested in the NHS. Statins have an anti-inflammatory effect - rather like VitD. In fact the new generation of statins now contain VitD - now there is a surprise ! Many many people on this forum have reported that their cholesterol levels are fine when they are adequately treated for Hypo.
When there is damage to a blood vessel - then cholesterol is there to seal the damage - rather like a plaster - so it can heal. Cholesterol is needed for the production of every hormone in your body. It is more than likely that when you were diagnosed with raised cholesterol you were also Hypo - it's just possible that you did not have thorough testing at that time - possibly only the TSH. Hence it would be worth having copies of all your results. Also Docs seem to think that if your TSH is in range then you are not Hypo - sadly not correct. It is where you are in the range that is key. Take a good look around the main website of this Forum and there you can read about the thyroid - testing - understanding results - vitamins and minerals - anti-bodies and anything else you need to know. Thyroid UK also features on NHS Choices website - so the information given has been approved.
Do you not understand anything I say. All that information does not interest me. I asked a questionand you Marz bombarded me with numbers and letters etc. I am not obsessed with all that and happy with my doctor. You don't live here so your access to medical help could be different to ours also you maybe paying privately.My doctors have explained all about cholesterol and it's put in simple terms good and bad. So if statins are rubbish and just a money maker (which I agree with for plenty of meds) how come my cholesterol lowered taking the statins and increased when I stopped then went down again when I started them again. Previously to that I had tried diet and it did not work and as my cholesterol is due to familia diet alone would not work. Again I say my gp is not a pill pusher and I know all about the incentives for them to do so. All doctors are not the same.
Maybe I'm a lucky one who in life has had excellentmedical care everything always explained and no cause for complaint because everything has been dealt with to my benefit.
Please be assured if I need any print outs or not happy I will challenge my doctor. Until then I will follow his advice.
We all have different medical backgrounds etc and it is not one size fits all.
You might try adding magnesium supplement to counter low magnesium from long term use of PPI
gov.uk/drug-safety-update/p...
But do NOT supplement B12 or folate or any vitamin B complex or take a multivitamin before thorough testing for Pernicious Anaemia
Low B12
pulsetoday.co.uk/clinical/m...
Lottie I don't have any answers as I'm quite new to this myself. I was diagnosed 2 months ago with extremely high Thyroid antibodies and raised T4. I've been taking Levo 25mg for nearly 2 weeks and I'm not sleeping well, and am absolutely shattered beyond belief. I can barely function. I'm not working - but spending all day at home I still feel too exhausted to do the most simplist of things. I started losing weight and feeling better when I decided to go Gluten Free - 2 months ago. I haven't been 'completely gluten Free'. I've had moments when I've given in to a cake or whatever, but my gut felt better and I lost weight. Now being on Levo I've put on weight and am shattered all the time. I thought this was supposed to make us have 'more energy'. Just wonder if our bodies are getting used to it/ or not, and whether we both need a higher dose.
Sorry for rambling. I completely sympathize as I'm experiencing the same and it's making me more depressed than before. x
Get some gluten free cake or biscuits in for those weak moments.
Hardest part can be eating at friends or family. Especially if you don't want to make a fuss, but it's important. Explain it's like being coeliac, just a different label. Most have heard of coeliac.
Eating out is getting much easier and lots of supermarkets are realising it's a huge market, but try to avoid too much processed stuff.
Thanks for your advise. You're absolutely correct about eating and friends or eating out. I went to a colleagues leaving party the other day and there was very little aside from crackers, sandwiches, cake etc. Although I packed some of my own GF biscuits it's difficult to get these out in front of everyone when they're getting food off the tables and you're asked to come up. That's when I have my 'weaker' moments. I only told one person I was "trying Gluten Free" and therefore not drinking beer... a weakness of mine. They all laughed and said "it was a load of rubbish". Can't blame them. I used to be like that as well. Thanks, I'll mention coeliac next time. Trying to explain it's a thyroid thing or something nobody has heard of is difficult. x
Yep "been there done that"
It was only after I saw gastroenterologist that my other half actually understood for first time it wasn't some airy fairy fad! And just how serious it can be
Easiest to just say when out or at restaurants that your coeliac.
Hey don't worry about rambling😀
It's weird we both feel worse for being on Levo, at first my body reacted and I felt dreadful for a few days, aching, tired etc then seemed to level now gone tired and I don't sleep well and in some ways crave sugar. I'm not really over eating but put a couple of pounds on this last two weeks.
So yes I don't feel the levothyroxin has made me feel better my doc said I would lose weight.
Re PCOS that is another condition that has many sides to it and keeping weight off is really helpful but I did research and bought a book on it and I was amazed just like this thyroid thing.
If we can help each other at least we are here. I do get a bit overwhelmed by some of the things I hear on here.
Take care Lottie😀
You may well have had excellent care but, and I am surprised at my quoting Ronald Reagan, “Trust, but verify”. No doctor, especially no GP, knows everything. Most have at best a rudimentary understanding of hypothyroidism. So verification could be seen to simply be sensible however much trust you may have in the GP as a person.
Statins do reduce cholesterol. The issues are around what else they do, whether they mask hypothyroidism by reducing one of its well-known signs, and even whether it is necessary and appropriate to reduce the cholesterol.
On the subject of cholesterol, I was offered statins. My cholesterol level at the time was only just over 4!
25 micrograms is a low starting dose. The standard starting dose is 50 micrograms with 25 being reserved for those who have issues which make extra caution appropriate (e.g. heart disease). As others have already said, it is appropriate to test again after about six weeks and adjust accordingly.
As others have said, the reduction of your own thyroid hormone production due to the effect of 25 on the feedback loop can mean that 25 has little benefit. That is why it is most often inappropriate to leave people on 25 after the initial period (wherein any adverse problems will hopefully have been identified) and to raise to 50. Then repeat the testing after another six weeks.
As you have now missed the six week point, and meandered on for quite a bit longer, you cannot see where you had reached in the initial period. If you needed an increase at that time (which is, in my view, very likely), then you have been under-dosed for those subsequent weeks. That is not ideal by a long way.
Having results (including reference ranges) can really help to get people to a better place. We have seen many who eventually found a good place (that is, a dose which works well for them) and have the blood test results from then. In months and years to come, feeling less well and comparing against those results can indicate under- or over-dosing. (Such differences can occur simply by changing make of levothyroxine tablet.) Often a small adjustment in the right direction helps return to that good place. GPs rarely have the correlations between your feelings day by day and the blood test results. You potentially have that. But only if you get your results.
The above, though, only applies if you are being tested for Free T4 (and, preferably, Free T3). If there are only TSH results, then that is an indication that your GP is not as excellent as you may think and hope.
Do bear in mind that in some disease areas, test results are being fed to patients even before doctors! Patients are being positively involved. Most obviously, diabetes but also some kidney disease. We are being encouraged in some areas to fully involve ourselves with our health and treatment. We are being told that our health is our responsibility. Sitting back and assuming excellence and no need to understand and take on that responsibility is not a recipe for optimum treatment.
I’d also point out that in terms of weight, it is vital that you appreciate that changes in weight can be due not to fat but to water-retention and mucin.
Marz
Hi only just seen this.
My biggest confusion is why I feel worse since starting levo. The low dose was due to other health probs as my doctor followed the guidelines which he showed me.
I did see my doc within 4 was of starting levo as he wanted to know how I was feeling on them. I told him at first I felt terrible then it settled but didn't feel suddenly full of beans. It was arranged then I should go back within 8 weeks and was to have a blood test before so I would get my results then which will be 12 weeks fom starting levo.
My doctor is lovely and very thorough but maybe if all docs are lacking re thyroid I will find that our and let you know, but regarding everything else and with family I have no complaints.
I do challenge him if I have information and if I disagree with him but I do have faith in him and without that I would feel there is no point in seeing him.
I will let you know what happens at my next appt.
Lottie
helvella will not have seen your reply as you need to click the Green Reply Button for the intended person to receive an alert and read your reply ....
hypothyroidmom.com/pcos-and...
An interesting link for you if interested - about PCOS and the Thyroid ....
Fed up, worried and just plain fed up!
Just so fed up 🙄😔🙄
Fed Up with Hypothyroidism...
Sigh :-( fed up today :-(
