Hi all, I've recently been diagnosed with hypothyroidism. It came completely out of the blue and was only found in testing for infertility. I'm been taking my prescription of 50mg of levothyroxine for 6, nearly 7 weeks. When/will I notice an effect of the mediation? I've felt like cr*p for the last 3 years and have put on 4 stone, having gone from a very fit and strong (female) rugby player to someone who can barely walk a mile never mind run a few! Feeling quite alone in this as the only information I have is what I've found on the Internet (reliable to some extent I'm sure) I've changed my diet, becoming gluten-free and eating low fat meals. Just wondering does the community have any advice, tips or general support they could offer? Anything they wish they new earlier? I would be grateful for any.
Thanks for reading folks
Bam
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Bamtothebam
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Hi Bamtobam I would say to read and learn as much as you can about the thyroid, this site is brilliant for that also don't think docs know everything about treatment for thyroid in my experience they don't and anything to do with thyroid takes time.I have learnt lots just reading posts on here good luck in your journey.
Thank you for your reply. The information is overwhelming to be honest. I was literally told I had hypothyroidism as a small part of a bigger diagnosis. I've not yet had any advice from my own GP. But I'm struggling with some of the terms etc. I'll keep reading though
I doubt you will get any information from your own doctor, I doubt he know much about it. But, if you have any questions - no matter how silly you think they are - don't hesitate to ask them on here.
Welcome to our forum and hypothyroidism can affect fertility and pregnancies, therefore you have to be in tip-top condition - thyroid hormone wise.
It may have taken years for you to become hypothyroid so it will take some time to slowly build up your hormone levels to an optimum (optimum can be different for everyone).
First thing is all blood tests should be at the earliest possible, fasting (although you can drink water. Also allow approx 24 hours between the last dose of levo and the test and take it afterwards. This allows the TSH to be at its highest (it drops throughout the day) and can mean the difference between getting an increase or doctor reducing dose.
50mcg is a starting dose of levothyroxine (which is T4) and converts to T3 - the only Active hormone which is required in all of our receptor cells. So you should be due an increase of 25mcg around about now and so on until you feel well and not until the doctor decides your TSH is 'in range' and stop increasing. The aim is a TSH of 1 or lower.
Ask GP to test B12, Vit D, iron, ferritin and folate as we are usually deficient and everything has to be optimum.
Always get a print-out of your results with the ranges for your own records and post if you have a query.
Thanks for your reply, it's cleared up a few questions I had. I get the feeling GP's have to be encouraged to test the thyroid properly, is there a reason for this?
Especially in the UK. The NHS will not test for FT3, usually. Rarely tests for TOP antibodies, and never tests for Tg antibodies. Hates to test for vit D, and is reluctant to test for other nutrients. Here in France, I can get these done easily, don't usually have to ask.
Where thyroid is concerned, the NHS is an ignorant back water of health care.
Hi I had tt 13 years ago and ablation in Middle East. Have functioned well on 200mg levy until 18 months ago. Menopause, stress of husband loosing job and move back to U.K., many viruses means I am completely ill, not functioning, all symptoms of ME in Dr Sarah Myhills book and UK GP focusing on suppressed THS and wanting to reduce dose of levy, already dismissed me when mentioned natural alternatives to levothyroxine!
I have appointment with him Tues but we do have a house in France and if get no joy wld u recommend we look into seeking treatment there! I have had problems before accessing but may be different now we are back resident in Europe- as long as Brexit not activated
I think it would most definitely be worth a try. But, you must know what you're talking about before approaching a French GP, because they don't know much about thyroid, but can be persuaded to give you what you want if they feel you know something about it. Otherwise, they'll probably just fob you off like any British GP.
Low fat is not healthy. We were all conned with that. The body needs fat and it needs cholesterol, and nutritional 'advice' given by the medical profession is totally wrong. Not eating fat will not help you lose weight - probably the contrary - but it will affect your mood, your appetite and your hormone production.
What advice would I have given myself at the beginning of my journey? Know your disease. Learn as much as you can - because doctors know nothing! And, if you don't trust what you read on the internet, buy a book. Although there are as many bad books as there are internet sites. But, the point is, the more you read, the more you are able to sift the chaff from the wheat, and common sense, and experience, will start to tell you what you can trust and what you can't. You could start by reading as much as you can on here. Many members know far more than any doctor.
You are just starting out on your journey, and you still have a way to go, I'm afraid. And the first things you need to know are these :
* Levels should be tested six to eight weeks after a dose increase or decrease. Less is not long enough, and more is too long.
* The point of thyroid hormone replacement is too bring your TSH down, and your FT4 and FT3 up, to a point where you feel well. Not just to a point where your doctor thinks is good enough. We don't settle for 'good enough', we want 'optimal.
* Optimal is where you feel well, and your symptoms have gone. Blood tests are just a guide, they can't tell you when you are optimal, because we're all different and all have different needs.
* If you still have symptoms, you need an increase in dose. Usually, 25 mcg - but no more. And, if you should need to decrease your dose, it should be by 25 mcg at a time, no more.
* Never accept your doctors opinion that your labs are 'fine' or 'ok', as I said, we don't want 'fine' or 'ok', we want optimal. And, if your doctor uses the word 'normal', what he means is 'in range'. There is no such thing as normal, because the ranges are wide, and we're all different.
* Always ask for a print-out of your results. You need to know exactly what was tested, and exactly what the results were. And you need to keep your own records. If you live in the UK, it is your legal right to have a copy.
* When you go for a blood test, make your appointment early in the morning - as early as you possibly can - TSH lowers throughout the day. Fast overnight. TSH drops after eating. And leave 24 hours between your last dose of levo, and the blood draw. Take it afterwards.
* Always take your levo on an empty stomach, with water, and leave one hour before eating or drinking anything other than water. Leave 2 hours before taking other supplements or medication. 4 hours before taking iron, calcium, vit D or estrogen. And, probably, 6 hours before magnesium. (Can't find any definitive information on that, but experience tells me six hours is best.)
* When you have your next test, ask them to also test vit D, vit B12, folate and ferritin. These all need to be optimal for you body to be able to use the hormone you're giving it. Nutrients will probably be low, because hypos usually have low stomach acid, so absorption/digestion is limited.
* If you haven't already had your antibodies tested, ask for them to be tested, too. If you have Hashi's, there are other things you need to do to help you feel well.
Thank you so much for your reply! This is such good advice! So the gluten-free part is good but keep a decent fat intake level. Fast before bloods and watch my medication times. Keep records of everything. Question results. And read, read and read again!?
Be kind to yourself and don't push yourself to get unnecessary jobs done. The necessary jobs that need doing are hard enough. House dust can wait! Before diagnosis all I could do was take my daughter to school and sleep before I picked her up and slept before I could feed her. Utter nightmare. It does get better but don't expect miracles, there certainly aren't any.
Lots of good advice and yes a lot to take in but I shall throw in something completely different! Anything in the Thyroid world takes time! If you think about the nervous system that works very quickly like the message to move your hand if it's touching something hot! The endocrin system is slow though so don't expect immediate responses. You have to start at a low dose to get your body used to it and then after 6 weeks, the time it takes your dose to get up to full strength you need to be retested and most probably are still needing a little more medication so you go though the process again until you are on the right dose for you. We are all different with different circumstances so don't expect to be needing the same as someone else. Read all you can, Thyroid Uk site is a good place to start, always get copies of your bloods and post them if anything you don't know or understand , the ranges are very important as they differ from lab to lab. Shout out if something you don't understand or you are unsure about. Remember we have all been in your position and so understand.
So glad you have found us. You may like to keep a thyroid diary, wish I had! It's useful to jot down your dose, any symptoms, the site has lists and there are ones you may not have realised are thyroid related. Also some things may improve depending on what you are eating so read the foes and don't and how to take you medication properly. It's also useful to not chop and change brands so if you find one that suits then as the pharmacy to supplement that one each time. Sometimes when we start feeling off colour it's useful to have as many things the same so it's easier to work out where the problem could be.
You will soon get into a good place when you have sorted the best time to do things and gotva few bloods behind you. Some doctors are very much in the dark as well but don't worry justreach out and we can make suggestions.
The greatest thing I did was discover this site which allowed me to educate myself to the point where I no longer have to take the doctor's word for anything and I have successfully taken charge of my own condition's management. There is no need these days to suffer in silence because a doctor will not treat you because your blood tests fall within 'normal' ranges as you can now source your own reliable medications online. Education, education, education... That's what it's all about. Ask questions, lots of them... you will get answers, and they won't be anything you'll get from a doctor! Good luck on your journey!
Read about the autoimmune system. Google Amy Myers and her book The Autoimmune Solution. Watch videos on the subject and read "eat fat get thin". Wish I had been given this advice at the start of my journey - although it wasn't available back then!
There are lots of people selling the book, used and new, so look for other entries on Amazon selling the same book. Prices vary enormously from about £3 up to about £42.
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I totally agree with greygoose in her reply about eating fat. I lost some of my brain fog when I started eating more fats. I would add a couple of things to her advice.
Not all fats are created equal - some are created synthetically in laboratories and must be avoided e.g. margarine. The advice on eating fats and which ones are healthy varies with practically every link you read on the internet, and trying to remember what is good and what isn't was too much for my hypo brain. So I came up with a way of getting it right that works well enough for me.
If you want to know if a particular fat is good for you, ask yourself if people were eating it 300 years ago. If they were, then go ahead, otherwise avoid.
Another thing to think about is how fats behave when heated. Olive oil is healthy but its chemical structure can be changed by high temperatures. So I save olive oil for salad dressings, and use beef dripping or coconut oil for frying.
The fats and oils I eat/cook with : Beef dripping, goose fat, coconut oil, butter, olive oil. I would use lard for frying too - I think it is healthy - but I don't like the flavour.
Some things I avoid : Sunflower oil, vegetable oil, margarine, low fat spreads, products that pretend to be butter.
Very true. Do you know the origins of margarine? It was invented as turkey feed, in the US. But, when they fed it to the turkeys, they all died! So, in order not to waste it, they decided to sell it to humans, as a 'healthy' alternative to butter! Always beware of that word 'healthy' in commerce. It usually means that someone is trying to pull the wool over your eyes.
Nut oils are also good. They are made by compression, and not by a chemical process, like seed oils. Avocados and avocado oil is also good.
Absolutely agree with eating more fat - avocado, grass fed butter ( kerrygold or organic if you can) olive oil, organic meat if you can ( no routine use of anti biotics or growth hormones and the fat on organic meat is much better for you). I would go easy on the plethora of gluten free foods available now. Try to stick to unprocessed gluten free foods and look for a bread, if you eat it, that doesnt contain a host of additives. My local organic farm make their own bread which is fab or make your own. I eat mostly paleo but at weekends have gluten free oats or bread as a treat.
My hypothyroidism was discovered as part of routine fertility testing, too. I was in my early forties so knocking on a bit! However, many of my friends were getting pregnant at that age so i thought i could too. What i wish i had known then is this: all the advice above re: vit levels, etc is essential. If your doc wont test, do it privately with Blue horizon. You dont say how old you are but getting pregnant with hashi is deff more difficult and hopefully your gp will be sympathetic and help you out so you dont have to pay. Gps are getting more irritated with us because we won't just settle for ' your tsh is in range, you are fine'. Dont accept this. Your t4 and t3 need to be at the top of the range. If you have put on 4 stone i expect you would like to lose it. Go paleo it cuts out all grain and the grain is often the prob with hashi. Dairy too. I know its draconian but if you want to get pregnant you need to really go for it. Make sure your meds are upped regularly. I stayed on 50 mcg for about 2 years and i was under a good endo!! when i look back i realise being unable to get out of bed until 11 and finding ordinary chores overwhelming was because i was seriously undermedicated!
Thank you for your advice. I'm 29. I've only just had my blood test (friday) so I'm going to try and get an appointment towards the end of the week. Already I have a nice long list of questions to grill my GP. I'll update on how it goes!
The only additional advice I would give if your doctor refuses to test you for the things mentioned then save up and get them done privately.
If your GP is difficult about giving you your NHS test results, makes stupid comments about the internet/ health charities endorsed by the NHS , or makes rude comments to you in anyway about your weight or your state of mind , then don't hesitate to ask neighbours, family and friends' about their GP particularly if they have a chronic illness then change practices asap.
Firstly doctors aren't the only health professionals and scientists with an interest in the human body, and these people's research often ends up in mainstream but only after many years/decades. Secondly no person whether they are a health professional or not has a right to insult you, belittle you or ignore legislation like the Data Protection Act. Also without health support charities and groups the NHS would be overrun.
Finally remember you are the best advocate for your health.
Mel, it's doubtful that goitrogens will hurt you. So, unless you have a bad reaction to one, there's not need to give them up. They did not make you worse in general, I assure you.
Soy is different, all unfermented soy should be avoided - soy oil, soy protein, soy milk, etc. Fermented soy is ok, but should be eaten in small quantities.
I ate excessive amounts for a few years, on a 1000 calorie a day diet, & got fatter & more hypo. I had no idea my "healthy vegan diet" was so bad for me. Half a litre of soya milk every day & tofu 4 times a week with raw greens did not do me any good!
I stll eat lots of greens, but make sure the naughty ones are cooked, & have promised myself I can have tofu on rare ocasions, as I really liked it.
I have a salad dilemma, as my favourite baby spinach, watercress & rocket, will have to be for rare occasions, too. I think rocket's ok though.
I'm afraid that if you are really sensitive to a particular goitrogen, cooking will not help. Try eating them raw. If they don't agree with you, you'll know it!
Unfermented soy is a different matter. It works on two levels. Firstly, it is a goitrogen, which means that it impedes the uptake of iodine by the thyroid gland (which means that if you are on a full replacement dose, or have lost your thyroid, goitrogens won't affect you at all). And, secondly, it affects you on a cellular level, but impeding the uptake of hormone by the cells. So, that will also affect the thyroid hormone replacement you are taking.
I self-medicate with NDT &/or T3, so don't rely on my thyroid to do as much, though it didn't seem to do much before!. I carried on eating the aforementioned salad most days in the summer, before realising spinach & watercress should be off my shopping list. I noticed no difference when I ate them regularly, so I'm glad I'm ok to carry on eating them. I now only use tamari & miso on occasion, & avoid any veg foods that contain unfermented soya.
Natural dessicated thyroid, with all the thyroid hormones in, not just T4. I didn't find it worked especially better for me than T3 only, but reports state that most people do. I'm currently taking both NDT & T3. It seems most people on T4 only, do not feel well, & know several
people who still suffer with hypo symptoms from undermedication on T4.
I self-medicate as my blood tests don't reflect my body's problems, & found it's changed my health conditions for the better.
I didn't know I was hypo for 40 yeas, & only deduced it was this issue after finding I had a pituitary adenoma which can cause secondary hypothyroidism. I wish I'd had thyroid replacement hormones from when I was young!
There is lots of information on here re replacement TH hormones, supplements & diet, on the TUK website & NAH website, as well as STTM & Hypothyroid Mom websites. You need weeks to get through them all & ingest everything, so maybe take a look at a few articles a day. There's links to these websites on facebook & twitter, too.
Just a reminder lots do well on Levo so don't need to join forums when they are happy. Ok you might find it doesn't work well for you in the long term but it's well worth trying Levo first plus the things that often cause Levo to be a problem don't help when trying the alternatives either!
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