hi everyone, so i lurk on here and i read all the problematic/doom and gloom stories - but are there people out there that have had success with levothyroxine? in reference to feeling better and weight loss once their levels have been corrected?
im on week 2 of my upped dosage and im trying to stay positive, ive put a stone on so far since diagnosis and im gaining about half a pound a week. so im desperate to reach out to those that have had success with levo.
my tsh levels are 5.8. vitamin b12 - 390 and im testing for t3 and t4 on my next bloods as i requested that
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Yes, apparently there are many people who do well on Levo alone. The reduced ability to convert levo or T4 into T3 is supposed to affect a minority only. I think that minority is quite large, judging by this forum.
I agree with human bean's suggestions. A TSH of 5.8 jumps out immediately as your being under medicated. That is a classic indication of hypothyroidism. Regarding your question regarding Levo, yes, many people do perfectly well on it. I used to be one of them but my brand (Forest Phama) was bought out and the brand the new company made just didn't work for me. What with the difficulty getting to the right dose, my feeble ability to convert the T4 to T3, my stupid Endo's insistence upon lowering my dose because my TSH was too low, the "brand" factor was just the final blow, I changed to NDT and never looked back. But give it a try, maybe you are one of the lucky ones, just keep logging in to this site if you think things are going wrong. Oh, and if they do, don't panic, it can be fixed, don't give up.
Allegedly, 85% of people do well on levothyroxine. The number varies from source to source though, and I've seen it as low as 50% and as high as 95% apparently doing well on levo.
With a TSH of 5.8 you are very under-medicated. When did you start treatment? What dose did you start on and how frequently have your levels been raised?
Your vitamin B12 level is too low as well. The Pernicious Anaemia Society recommends a level of about 1000. The Japanese think that deficiency sets in below a level of 500.
hello. my dosage was upped on 8th august to 50mg, i was told it was only borderline - however i have all the symptoms of under active so they are still treating me. ive gained a stone since july 15th. and im slowly gaining 0.5lbs a week. i started on 25mg.
do you think i should supplement myself with b12 then, as she didnt say anything about that?
I'm not clear on when you got the TSH of 5.8. Was that before treatment? After a few weeks on 25mcg? Or after a few weeks on 50mcg?
A high TSH shows that you are hypothyroid. It should lower with treatment.
Most people on Levo feel at their best with a TSH of 1 or below. Most people also need Free T4 in the top quarter of the reference range and Free T3 to be in the top third of the reference range. The most important one of the three tests is Free T3 but it is the hardest one to get doctors/labs to test.
You also need to ask your doctor to test folate, ferritin and vitamin D. There is no guarantee they will do them, but it is worth asking - you might be lucky.
Yes, I think you should be supplementing vitamin B12. There are various kinds of B12 available. The one that helps most people and is most easily absorbed is methylcobalamin. You will need 1000 mcg tablets. (Or 5000 mcg then switch to 1000 mcg after the first bottle.) Popular ones on this forum are Jarrow Formulas and Solgar.
Once you have them stick one tablet in your mouth, somewhere it doesn't annoy you, and let it dissolve very slowly. Don't suck or chew.
You will need a good B Complex to go with the B12. You specifically need one with methylfolate rather than folic acid. Also, avoid ones with cyanocobalamin in them. I take one a day of these :
The people on this forum seem to be the ones who have had problems with levothyroxine, either being kept on too low a dose or their body doesn't like levo. Or remaining undiagnosed due to their TSH not reaching 10 (in the UK).
When you tell your doctor/Endo, they dismiss your clinical symptoms and make their decisions about the TSH alone and say you are 'normal' now, meaning the blood tests are within the normal range. They also don't realise that most of us need a TSH of 1 or lower and some even need it to be suppressed.
Weight gain is a very common clinical symptoms: sometimes it is unexplained weight gain as the diet has not been changed but it is because, with hypo, our metabolism slows right down, ie.e. pulse, digestion, temp and weight is gained. Also, if kept on too low a dose, weight gain can become a problem but the doctors may accuse you of having an unhealthy diet or eat too much because they haven't increased the dose to optimum.
to avoid the doctors saying this - i joined weightlossresources, there you can count calories and have a internet food diary so each time i go, i print out my weight graph showing an upward trend and also a copy of my food diary and the calories i consume each week. these calories are based on me weighing and measuring everything. tedious but necessary. im doing everything i can to lose weight, and not seeing any of the results
When weight cannot reduce you aren't on an optimum of thyroid hormones and 50mcg is a starting dose. Hopefully your doctor will now increase every 6 weeks by 25mcg until you feel better not when the bloods are 'in range'.
Many find that when they are on an optimum they lose weight without the need for diet.
Some do need to diet but need to be optimally medicated otherwise it is a waste of time/money.
Tell your doctor you have been given information from the help group Healthunlocked and NHS Choices for info on Thyroid Gland Dysfunctions and are told that your TSH has to be around 1 or lower in order for you to feel well with no symptoms.
He should also test B12, Vit D, iron, ferritin and folate plus thyroid antibodies. We are usually deficient.
Remember to have your blood tests at the very earliest and allow 24 hours between your last dose of levo and the fasting test and take it afterwards.
Always get a print-out with the ranges for your own records.
I'm sure there are loads of people doing very nicely on levothyroxine once they are on a stable optimal dose. Sadly that is not you or me at this moment in time.
Most of the posts you read on here are not all doom and gloom, they are people like me and you for that matter trying to reach out to others who have been there and worn the T shirt in trying to get well again, it is no quick fix by a long stretch of the imagination and it takes time and is frustrating to say the least some of us are still reaching out, i am one of those people but i do try and help people on here too hence replying to you previously and describing my story doom and gloom or whatever you want to call it.
Occasionally i have seen posts on here of people doing well after a period of not doing well and it gives great encouragement to me and fellow readers and hope that i too may find the answer, i do still feel though that you have room for lots of dose increases with your TSH being so high and you may when you get to an optimal dose be one of those fortunate people who do do very nicely on levothyroxine i wish i was! I think though with your weight gain it is proof that you are not yet on a high enough dose. I am crossing my fingers that you will get to the right dose and come back and let us know how you are getting on...and if not you can be assured of good advice on here of how to try and get better, there are people on here who are well now having been really poorly for a long time. Hopefully they will chime in too.
You will need thyroid blood test again 6-8 weeks after your increase in dose to see how far TSH has fallen.
Probably will need further increase, but we have to go very slowly. Increasing to fast can make things worse.
Usual advice on ALL thyroid tests, is to do early in morning, ideally before 9am. No food or drink beforehand (other than water) As you are taking Levo, then don't take it in 24 hours before (take straight after). This way your tests are always consistent, and it will show highest TSH, and as this is mainly all the medics decide dose on, best idea is to keep result as high as possible
Ask GP to check levels of vitamin d, and ferratin, and to recheck B12 & folate. These all need to at good (not just average) levels for thyroid hormones (our own or replacement ones) to work in our cells
Also have you had thyroid antibodies checked? There are two sorts TPO Ab and TG Ab. (Thyroid peroxidase and thyroglobulin) Both need checking, if either, or both are high this means autoimmune thyroid - called Hashimoto's the most common cause in UK of being hypo.
(NHS rarely checks TPO and almost never checks TG. NHS believes it is impossible to have negative TPO and raised TG. It's rare, but not impossible, there are a few members on here that have this.)
Make sure you get the actual figures from tests (including ranges - figures in brackets). You are entitled to copies of your own results. Some surgeries make nominal charge for printing out.
Alternatively you can now ask for online access to your own medical records. Though not all surgeries can do this yet, or may not have blood test results available yet online.
When you get results suggest you make a new post on here and members can offer advice on any vitamin supplements needed
If you can not get GP to do these tests, then like many of us, you can get them done privately
Blue Horizon - Thyroid plus eleven tests all these.
This is an easy to do fingerprick test you do at home, post back and they email results to you couple of days later.
If you have Hashimoto's then you may find adopting 100% gluten free diet can help reduce symptoms, and lower antibodies too.
Assume you know that Levo generally should be taken on empty stomach and no food or drink for at least hour after. Many of us take on waking, some prefer bedtime, either as more convenient or perhaps more effective. No other medications at same time, especially iron, Vit D, HRT or magnesium, these must be at least 4 hours away
Best advice is to read as much as you can. Vitamin and minerals levels are very important, but standard NHS thinking, doesn't at the moment seem to recognise this.
You will see, time and time again on here lots of information and advice about importance of good levels of B12, folate, ferritin and vitamin D, leaky gut and gluten connection to autoimmune Hashimoto's (& Grave's) too.
Yes ...in answer to your question....I am at last getting much better, thanks to all the help on here....see my profile for more. The key for me (and many others) was to realise this was leaky gut/gluten/low nutrients ......as well as needing high enough Levo dose to keep TSH around 1)
I was on levothyroxine for two years and never felt very well on it. I put on over 3 stone and had awful depression, I just felt like a shadow of myself which grew increasingly disturbing to me. I had brain fog, my ribs kept breaking and I just did not feel right. In the end I decided to try natural dessicated thyroid (NDT) not undertaken lightly having been vegetarian for 30 years. I feel much better on it than levothyroxine, the psychological disturbances and depression are banished, the extra weight has gone, the ribs are holding up fine. I went gluten free and it was discovered I had severe vitamin D deficiency so I take 5000iu a day D3. I had atrophic hypothroidism. Ie autoimmune but no goitres the gland just shrivelled up.
However, my mother was fine on levothyroxine (hypothyroid, non hodgkins lymphoma of thyroid treated with chemotherapy - too big a tumour to operate on) and my sister had similar to my mum but had a total thyroidectomy and she also feels very well on levothyroxine. She tried my NDT and was good on that too but went back to levothyroxine as she could not notice any real difference. They would both have doses that suppressed their TSH to keep the cancer at bay so took considerably higher doses that I had despite both of them having petite builds where I am much taller and heavier set. I did try upping my Levo but just became agitated like I was hyperthyroid again (I had bouts of hypo and hyper over the years of being undiagnosed and when finally diagnosed one final humdinger of a hyperthyroid phase before plunging into eternal hypothyroidism and just missing plunging into eternal rest!)
Some in the forum say tiny changes in their dosage of Levo can suddenly make them feel properly well again where anything over or under does not (Helvella is one I think).
So it really does vary from person to person and even within the same family.
I still felt dreadful when my TSH came down to 6 (it was 110 but I was totally out of it at that level, It was gruesome) so you still have a way to go to get it under 1 and you can't be sure if Levo will suit you or not at this juncture as you are not properly optimised yet.
I hope you get it properly controlled soon and you have options should levothyroxine not make you feel properly well again. So hang on in there and good luck ☘ This forum is a great support in getting back to good health
Eliiji has it right you need to be on a higher dose but it takes regular tests and increases.It was a year before I felt just about OK and that included upping vits and minerals .It is not a quick fix.Some symptoms may go quick others linger .Your TSH needs to get to 1 or below .
the problem i have is that im already 222lbs, and so far im gaining 1lb every week, ive gained a astone since 8th august, if it takes a year ive been over 260lbs by then. which isnt safe
But hopefully Leah with every increase you get of levothyroxine it will reduce the weight gain in other words you wont be putting on a 1lb every week and if all goes well you will hopefully have more energy to exercise more when you are on the right dose for you, which will enable you to lose the weight because your metabolism will have improved. Although i have said i have gained a lot of weight i am not gaining at the moment, i have infact stabilised but i need just a tweak more in my medication to hopefully be firing on all cylinders to start losing weight but i still have nutritional and other hormone imbalances to resolve too which may be preventing the thyroid medication working as well as it should be.
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Where are the success stories?
Success with levo treatment...
Thyroidectomy success stories
Success stories with T3 and T4 combination
any success stories? recommended practitioners in UK?
