Hello people... I wish everyone is in the best of health’s and if not I hope you all get onto the path of good health quickly and swiftly!
This is my first post ever so my background is 32 year old male suffering from thyroid issues since 24 years approx. I was diagnosed at 26 years of age with sub clinical hypothyroidism and was referred to and endo who prescribed Levothyroxine at 25mcg daily.
This pill was a life saver for me, honestly was a GOD SEND as it made me feel young energetic and just full of life that I could cry with joy. Feeling like I had been robbed of my life before this BUT unfortunately my time was limited. After a good steady few years on the levo I started to feel all my symptoms creep back in to the stage I was at the peak of my health issues. In 2017 I finally agreed my endo to increase my dosage to 50mcg thinking I just needed more however this only made we worse and caused palpitations and a tight chest. I wasn’t able to talk to anyone about this and after a night at hospital for my heart palpitations I stopped the meds the next day totally and then continued with 25mcg. I stopped all levo med shortly after as I feel It was not benefiting at all. Maybe a bad move I’m not sure.
I have also alongside the thyroid issues had digestive issues such as a very slow digestion. Lack of hunger. Bloating. Diarrhoea etc. The only thing I can think stopped the levo from working was that I started smoking again
I have since quit cigarettes again and tried to get my endo to prescribe the 25mcg again however I’m in that dark hole now where all I get from him is that all my levels are fine. I don’t know whether to laugh or cry but depression is severe at this stage of my life and I’m ageing quicker than my 10 year older brother lol. 😞
Guy ANY help or comments are greatly appreciated and I hope this on no one as only GOD and members on this forum know the hell we go through daily...
God bless and thanks for reading
Written by
Khan-123
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This is something I wrote the other day for someone else. I hope it can also help you (edited version):
"This business of T4 'not working', is rather a red herring. You can't talk about it 'working' in the sense you would talk about an aspirin or something. It's got to be doing something, just not enough. It's a hormone. Hormones always do what they're supposed to do. The trouble more often lies with the doctor prescribing it. They don't know enough about thyroid to do it properly.
It sounds like your doctor starting you off on too low a dose - 25 mcg? That is almost guaranteed not to help (although sometimes it does, obviously, it helped you), and could even make you worse. But, they don't know that. 50 is a reasonable starting dose, depending on how old you are, but could be 75 mcg or 100 mcg. And it should be increased by 25 mcg six weeks later, after a retest. And, presuming you absorb it correctly, levo (T4) will do what it's supposed to do: build up your store of FT4.
The next bit is down to your body, not the T4 itself. Your body has to convert the T4 - storage hormone - into T3, the active hormone - the one that does all the work in our cells. Not all bodies are very good at that. But, you won't know how well your body converts without testing FT4 and FT3 at the same time and comparing them. But doctors won't even test FT3 most of the time because they don't understand T3 - what it does and how it does it. But, once you get those two problems sorted - high enough dose and conversion - levo will 'work'.
T4 is designed to be swallowed whole, and left in the stomach, on its own, for long enough to be broken down by the stomach acid. Each molecule of T4 is attached to a molecule of sodium, and you need the stomach acid to dissolve the sodium leaving the hormone to go on into the gut and be absorbed through the gut wall. And, there, of course, there are many possible problems…
First of all, did you take your levo on an empty stomach, with just water, and leave at least one hour before eating or drinking anything other than water? Did you leave two hours before taking any other medication or supplements - four hours for some of them?
Second problem is that hypos usually have low stomach acid, so this cleaving of the sodium molecule might not even happen, meaning that the hormone cannot be absorbed in the gut. Have you investigated your stomach acid? Do you have nutritional deficiencies because your food isn't being digested properly? Have you even had your nutrients tested.
Once the hormone gets into the gut, there can be more problems there, like slow transit, and leaky gut, etc.
And none of the above is the fault of the levo itself. It's the fault of the doctor who doesn't know enough about it to make sure all problems are looked for and sorted."
I think, in your particular case, the problem is that you were left on too low a dose for too long. That can make you feel worse than if you weren't medicated at all. You should have been retested after six weeks, and your dose increased by 25 mcg. And, when you did finally get to increase to 50 mcg, your body was probably completely depleted of nutrients, meaning that it could not use thyroid hormone correctly.
So, now you have to start from square one, again. First of all, if you can, get hold of as many copies of your blood test results, with ranges, as possible. Are you in the UK? If so, it's your legal right to have them. You need to know exactly what was tested, and what the results were.
Then, post results and ranges on here, and someone will explain them to you, help you to understand them so that you'll be able to interpret them for yourself in future. Your endo saying your results are 'fine' is just his opinion - and he might change that opinion if the results were his!
So, let's have a look at what you can get, along with dates and doses, then we can advise you what else you need - antibody and nutrient testing, for example. This is always the first step to getting well.
Hello greygoose , given that this post is about smoking and you mentioned that the levo pill must be taken an hour before any food or drink, I want to ask... Does this also apply to smoking as well? I mean can I take my levo pill and immediately smoke as long as I don't eat/drink anything? Or can this also affect the absorption?
Presumably, the smoke doesn't go into your stomach. That's where there would be an interaction. But, I honestly don't know. And, when I was smoking myself, I didn't smoke that early in the morning, so have no practical experience to relate. And, to be honest, it's probably an area of interacion that has never been studied by researcher. So, the odds are, nobody knows about. Sorry I can't be of more help.
Oh my gosh I love your sweet post although I hurt for you as I know ( approx ) how you feel. Bless your heart!!! Greygoose is AWESOME in her advise !! I also want to ask of your weight. IMy endo put me on a higher dose of Levo back when first diagnosed w/Hashimotos ( yes I have tested positive for antibodies) because I am overweight. He said for that reasin alone I need more - course he has monitored thru 3 yrs & recently I tested 6.3 TSH ( US) ahh... but I know I've been naughty w/gluten containing products & sone dairy DESPITE knowing I tested sensitive to them. The curve ball for autoimmunity is there is ALWAYS an external component to unbalance. For me , I believe just like the first time around , it was a huge emotional trauma . I have confidence that te fine folk here will help piece together your clues.
Best 😊🎉🙏🌸⭐️
You poor man! It must be horrible to be ill like that from only in your 20s.
Can you post your most recent test results? If you are in the UK you can ask for a copy and they are not allowed to charge (except possibly a very small amount for paper and ink). I just ask at Reception and they print them out at once.
All your symptoms - including depression - are typical of hypothyroidism. Do you know if it is Hashimoto's, (autoimmune thyroiditis)? This is the most common problem, and blood tests usually show raised antibodies. Your thyroid gradually deteriorates over time because it is being gradually destroyed. This is why your symptoms crept back after feeling fine for a while.
Some people have difficulty coping with even a small increase in thyroxine, which probably explains your reaction to 50mcg. If you can persuade the doctor to renew your prescription you could try taking 25 and 50 every other day, or even only twice a week, then increase very gradually. Nothing happens fast with thyroid and you will probably not see much difference at first, but don't give up. Many of us have to fight for proper treatment because NHS guidelines and doctors' education on thyroid is not usually very good. Even endos often seem ignorant.
They think that your results are "Fine" if they are within range. But often our bodies tell us differently. We need optimal ranges that make us, as individuals, to feel well - even if they are "Out of range"
I said that "Some people have difficulty coping with even a small increase in thyroxine".
This is because thyroid hormones help provide our bodies with the energy needed by every cell. They control our metabolism - how fast our cells and organs work. Adding too much thyroxine can make us go into overdrive until the body gets used to the new level. Increases of only 25mcg are OK for most people, but maybe not for you.
Congratulations on giving up smoking by the way! I don't know what effect that might have on thyroid levels, but is bad for us anyway.
One effect of smoking I can think of is it ties up available nutrients, as they are directed to repair/replace cells damaged by the smoke (especially in the lungs).
As key nutrients must be in optimal ranges for thyroid medication to do it’s thing, smoking it seems makes the body’s ability to maintain helpful ranges all the more challenging.
Khan-123, Your title describes perfectly a common story we hear on the forum! Its very possible to be well on Levo for years, even decades, and then quite suddenly start to have problems with it. I think there are a few complexities in your case.
You were initially diagnosed 25mcg, this is a reduced starter dose usually only given to people who have a heart condition or are very frail - some reason not to give them the full starter dose of 50mcg. The general feeling on the forum is that both of these low doses won't do anything to help with your thyroid, and will just disrupt your own thyroid and feedback systems. In a way it's more puzzling that you were ever helped by 25mcg in the first place!
One thing I suspect, given that you describe a lot of lingering hypo symptoms, is that actually you've been pretty hypo all those years, but were getting away with it because you were young and fresh, and as you got a bit older it got a bit more difficult. I have a friend in quite a similar situation. He'd been well for years, and around age 28 his hypothyroid and sloppy doses from doctors seemed to catch up with him. I've got a bit of a personal theory that its similar to hangovers - when we're young the body can just find a way to manage and power through things even though our chemistry isn't right, and as we age at some point we start to feel more ill.
Smoking does have an impact on the thyroid. The most common situation is that a person gives up smoking, and that triggers hypothyroid. The mechanism is that asmoking masks hypothyroid symptoms. Theoretically starting to smoke should have made your thyroid situation feel better (I think hypothyroid people can find smoking feels great to them because they get a bit of improvement). But it may function like a too low dose of Levo, to just disrupt the situation.
You've come to the right place to get better advice about your thyroid. If you've got any blood tests, share them. A complete thyroid panel is TSH, freeT4, freeT3, and if you can get them thyroid antibodies: anti Thyroglobulin, and antiThyroid Peroxidase (they both have many abbreviations). I think because you've had a confusing time vitamins are helpful as well, ferritin, folate, vit B12 and vit D.
You can request copies of old tests from your doctor, it should be possible to see parts of your record online, or get print outs from reception, or maybe make a subject access request to see the whole record and copy out all the results. It would be interesting to see the results going back to when you first got diagnosed.
Probably even if you get your whole record you won't have comprehensive testing. Medichecks and Bluehorizon do mail order finger prick tests, Medichecks is the cheaper of the two and do thyroid sales every Thursday.
When you get some results, make a new post, make sure you label what tablets you were taking at the time of each test, and members will advise!
Oh yes, forgot to address another bit of your post, struggling with a dose increase. When we're very ill sometimes it can be hard to increase a dose - it increases our metabolism which in turn makes more demands on every other part of the body.
One way round it is to increase super slow. Also to look into adrenal fatigue and supporting your adrenals. It's the adrenals that shoulder the bulk of the work covering for a reduced thyroid function. Its also possible you've got vitamin deficiencies, as being hypo trashes our vitsmins, and then in turn low vitamins make it hard to utilise thyroid hormones.
SilverAvocado, I am wondering if your comments regarding smoking are theory or has there been research into the this. Does it impact of smoking relate to those with autoimmune thyroiditis rather than other causes of hypothyroidism. I started and stopped smoking with apparently no affect on my thyroid, or indeed symptoms. To be honest I felt generally much better when I stopped.
I believe it's pretty established, but I haven't looked into it myself. Giving up smoking is one of those common triggers.
I'm sure you could find more detail around the forum. Although people often find out they are hypo when they give up smoking, I believe it's more correct to say they were hypo all along but continuing to smoke masked the symptoms in some way.
Thanks, that makes a bit more sense. I was hypo long before I ever started smoking. I suspect this has more to do with a Hashimoto’s /autoimmune thyroiditis diagnosis than someone like myself. It makes some sense in that respect. For me there was no discernible difference in hypo symptoms.
I have also read online about a study were done which indicated that smoking cessation bought on thyroid issues. I feel this is one of them clinical studies which we can absolutely and totally disregard! It was angering me reading it lol. Tobacco smoke contains endless chemicals, suff you find in rat poison and car batteries and many many more toxic substances. I feel it’a safe for you to assume that smoking is bad for ur health and thyroid. No need for a clinical study to tell us this.
I don’t think we need to disregard the study that was done, I think it’s very interesting. I’d love to know why/how it masks symptoms ect. Ofcourse its madness to think that anyone would start or continue to smoke knowing Hypo can be delayed or masked. For me it’s the same as when a smoker does finally stop and the feel really unwell and cough and cough.
I just remembered that smoking is a stimulant and can raise blood pressure because of vasoconstriction (blood vessels narrowing). which if you are hypo could temporarily make you feel better.
If you as a youngish man started on the route to full hypothyroidism, the last thing you would need early on in the subclinical state is a low 25 ug T4 dose. In these cases, your stressed thyroid is trying to keep up the important FT3 level in your blood, which is the active hormone. If you take low dose T4 too early, then it interferes with this line of defense by the thyroid which is trying to keep you as well as possible by producing more T3. To get any benefit at all, you should have been started on at least 50 ug T4. Only then will the adverse effect on your thyroid's T3 output be outweighed by the body's conversion of the extra T4 into the T3 you need.
Hello guys really appreciate all the replies- it is certainly a breath of fresh air.
After reading them all I’m planning on compiling my historic and current test results however it will be with difficulty. Doctors surgery want request in writing and the endo surgery advise they need to ask the doctor first.. what’s one to do! Lol
Anyhow my latest test with the endo was more comprehensive as he tested for:
Vit D (I have been low on this for ages even though I get to optimum then it drops again)
Its worth trying gluten free even if you don't test positive for celiac. Its quite rare to for hypo people to also be celiac, but something like 80% of Hashimotos sufferers feel better gluten free.
Requesting in writing can be worth it! I managed to see my whole medical record going back since before I was diagnosed by going through the formal channels. That information is gold dust in itself, not to mention how many £100s it would cost to get equivalent tests from Medichecks.
With vitamin D we sometimes have to take a maintenance dose forever. Annoying at first, but you soon get used to it.
Sounds like you are on track to find some answers! When you've got your results, make a brand new post for them, because then it will be at the top of the forum and people will see it.
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