I'm hoping the lovely community on here will be able to provide me with some support, even some words of encouragement. Basically when I was about 17 I was diagnosed with hypothyroidism after experiencing symptoms of fatigue - I'd come home after school and have a nap without fail. I had also gained so much weight whilst still eating the foods I had always ate without putting on any pounds. I was put on lexothyroxine (50mg) and didn't feel too bad after. Between the ages of 17-21 I've been on that dosage and been okay, still not shifting any weight though even after exercising and eating clean. However ever since about two months before my 22nd birthday I've been feeling awful - my symptoms have never been worse. I'm losing hair (even when I've brushed it out I can easily grab a chunk by running through it with my fingers), I've gained so much weight, my skin is dry and flaky, I have memory loss and often find myself confused (not ideal when I'm trying to finish up with my degree) and feel so tired all the time. I can't even bring myself to exercise anymore. I was put on 75mg levo since December 2015 and still no sign of improvement. I've just had a little cry because I feel absolutely helpless, I should be in my prime but I feel ugly, fat and dumb all because of my thyroid ):
22 year old female in a 80 year old body... - Thyroid UK
22 year old female in a 80 year old body...
I'm so sorry snnsx. You should be enjoying your absolute prime of physical age right now. You're not dumb, your medical establishment is. Try to realize that for many political, commercial and egotistical reasons you have not been given the type of treatment that would bring about much better health. The GP can be useful for doing reasonable testing although they may not fulfill that either.
Let's get you motivated to learn a few things about your condition. Personally, after decades, I think everyone should first be on a natural desiccated thyroid like Naturethroid, etc. before going on a synthetic drug like levothyroxine. You should aim for a TSH level of around 1.0 (your doctor will rebel but never mind him/her), by taking a half grain of NDT and working up to a higher amount that feels comfortable doing it over a period of a few weeks. In the meantime a few supplements to help your hormone work so it would be good to know if your iron levels, B12 and folate are high enough. When you have been hypo for a while you may not have metabolized the nutrients even though you've eaten well. Often avoiding gluten can be helpful as it is found a causative in many chronic diseases.
If you have adrenal problems, this may interfere with your progress but that can be dealt with also.
Many of us here are doing everything on our own, acquiring our own T3 or NDT, using Blue Horizon for some testing and B12 and methylfolate can be purchased over the counter. There is nothing really to stop you and we're here to help. In the meantime, this will educate you.
youtube.com/watch?v=T_Re4ja...
Wow, it's all starting to make sense, I've read a few books on the thyroid but the video really makes sense of it.
Hi snnsx 👋🏻 I know exactly how you're feeling, I'm 35 but feel like I've aged about ten years with this illness! Luckily things are taking a turn for the better now.
Can I just start by asking have you ever been tested for Hashimotos Thyroiditis?
snnsx,
Welcome to our forum and sorry to hear you are feeling so unwell.
Weight gain, fatigue and neurological problems can all be attributed to low thyroid hormone. If you post any thyroid hormone, iron and nutrient blood test results complete with ranges ( numbers in brackets) members will comment.
Hi,
Welcome and well done for finding this site, the first step to recovery!
Ask your GP to refer you to an endocrinologist. If you or your family can afford private blood tests then bluehorizonmedicals offer a complete thyroid blood test.
Thyroid plus T is very comprehensive. Post your results on here then you will get very good advice.
In the mean time ask your GP for a copy of your last full blood count and post those results on here they'll give an indication of some imbalances before you have more comprehensive bloods done.
If not the endocrinologist will do it but there will be a wait on the NHS. I'm guessing like Heloise suggested and like most of us you need T3 which you don't get with Levothyroxine.
Look into Natural Dessicated Thyroid (NDT)
Gluten free is a pain but will make a big difference in sure, I also found that I'm much better (less bloating) off dairy.
Almond milk is delicious!
There are some good books to educate you.
Mary J Shomon
Living well with hypothyroidism
and The Thyroid diet.
verywell.com/best-way-to-tr......
m.facebook.com/kharrazianbr...
Dr Khazzarian has some great information.
Good luck!
Hi snnsx, I'm so sorry you're feeling so awful..we have (or still are) all been where you are so understand completely. I was diagnosed last year at 37 and at my worst I burst into tears in front of my GP telling her I just felt so old.
First of all like others have said, it would be really helpful to get some tests done. B12, Ferritin, Vit D and Ft3 most helpful. Ask your GP if they will test these for you, they will probably do all but Ft3 but you might get have a nice GP who won't mind!. Once you have the results post on here for members to comment on.
Meanwhile do lots of research on here and on the Stop The Thyroid Madness website. You can and will feel better but as Heloise said, it may require self medicating. Most people feel much better (myself included) on Natural Dessicated Thyroid or at least with synthetic T3 added to the levothyroxine.
Do you have a supportive family and/or friends?
Natx
Hair loss can be caused by low ferritin and lack of B vitamins. Many suffer from gut issues and malabsorption so can have low levels despite very healthy diets. Ferritin needs to be about 80 in order to grow new hair, apparently when your ferritin is very low your body concentrate on using available resources keeping you alive and will put hair growth on hold, so you definitely need this tested. Ignore your GP when they say your levels are normal and instead get a print out and post them here. Get the following tests:
Iron, ferritin, folate, B12, vit D, TSH, T4, T3, Thyroid antibodies.
There is a series of expert interviews happening now called Healing Hashimoto's Summit, well worth watching:
Food sensitivities can cause many symptoms including depression:
thyroidpharmacist.com/artic...
Well worth trying a Paleo autoimmune protocol to help identify your personal food triggers:
Bless you!! It was bad enough having problems begin in my late forties. I cannot imagine how much worse it must be to be in your twenties. I didn't begin to feel better until I moved from Levothyroxine (which did me no good at all!) onto natural dessicated thyroid. The ndt made me feel a lot better but I didn't begin to feel like my old self until I started taking T3 only. I'm 56 and I now do weight training and walk about twenty five miles a week and I've lost the seventeen pounds that I'd gained at my heaviest.
Maybe you need to look at alternatives to Levothyroxine, or to supplement the Levo with NDT or T3.
Xxx
Hi
Everybody on here knows how you are feeling and completely sympathise. I also had to do my degree while suffering and my doctors and endocrinologist telling me I was fine! One even haughtily said I might have the flu! I have lost decades to the illness but started ndt, nature throid exactly 8 weeks ago and I am starting to see improvements. However, these do cost money and I know you are a student. You will need to speak to your parents. If you have a good relationship with one of your gps they might be willing to give you a trial of t3 which you could try first. Tell them how this is affecting your studies and they may just remember back to their Uni days! Worth a go! Please listen to advise and support given here, do your research and read the books advised during your summer holidays. I would love to hear how you are doing. Love Anne Mxx
Hi S, as others have said, you do not have to feel this way. Those blood tests are vital and you must get the results to post on here. I thought I had a thyroid problem but people here helped me work out I had a b12 deficiency - on the right track now! 😜👍🏼🍀
Hello snnsx, really sorry to hear how bad you are feeling. As most others have said, we've all been there at some point in our thyroid treatment. Two questions really, did you have follow-up blood tests when you were on the 50mcg dosage? We're thyroid antibodies mentioned when you were first diagnosed
Sorry, my reply went before I was finished! Just to repeat, post any copies of blood test results you can get from your doctor. Ask for B12, ferritin, folate and VitD to be tested. My B12 was causing a lot of my symptoms because it was very low, we need it to convert T4 ( thyroxine) to the active hormone T3. Best wishes MariLiz
Sorry to hear you feel so bad and i can personally relate to all your comments.
I find it best to avoid carbs altogether or they make me feel exactly as you do (since having total thyroidectomy in 2008 my body does not convert carbs).
I have tried every diet known to man after putting on 4 stone in 18 months pleased to say i have lost all the weight and more after sticking to the Cambridge Weight Loss Programme ( the only 1 that worked for me)
In addition to this i found 'Stop The Thyroid Madness' on line and went and saw Dr Barry Peatfield - Durant privately had some test which i had to pay for and had T3 added as well as (T4 Levothyroxine prescribed by GP) and ive never felt better. Not 100% but at least 95%- hair stopped falling out, no flaking skin, no foggy brain, sleep is much better , no aching muscles and have my life back. I hope you manage to get sorted out this feeling is like existing in a haze and your feel 1/2 yourself bless you hun and good luck
You've had some very good advice from other forum members, so I'll just lend you my sincere sympathy. I had to do my A-levels and degree in very similar circumstances. I had already been refused both diagnosis and treatment by that stage. I had to give up my post-grad studies because of thyroid and other illness, so please do follow up on the suggestions above.
All the best.
xx
I waited twenty years an many of them laterally very ill to get a diagnosis. I would say get the test from blue horizon i have just ordered my second and thought expensive and got their thyroid plus 12 home testing kit as it covers a lot of what you need to know. I was on 100 lev but still ill came off it and went on the naturthoid,i have to say i haste been worse since then but i have learnt from these pages that i may be deficient in other things so am saying it can take time to get it right but just knowing for many from ends and gos know and say is not right for many. its hard to empower one self when feeling rubbish, i have found it so .i find the weight gain horrendous as folk think one is lazy or eating badly. Still it can be done,there is support, Post your hear and folk will help you. i shall be doing so when my latest test results come back.i find it hard still to interpret them. you are not alone. Good luck.
Just to add to all of the above, you will find it almost impossible to lose weight until you you get on the right amount of medication so concentrate on getting that sorted first and hopefully everything else will start to improve too xx
Hi Snnsx,
I am so sorry to hear that. What you are describing sounds awfully familiar to what I was going through. For me the being able to not think and memory loss was the worst. I felt like I watching myself slip away and it did wreck my self esteem. I posted a blog with more of my story if you want to read it.
After going through what I went through I am learning a lot about candida and body fungi. And I know that it can play serious havoc to the thyroid too. It may be worth taking a look into. For years I discarded it as being what had, but it did turn out to be the root of all my health issues and since doing what need to target it I feel the best I have in years. I have since realized that candida/ yeast infections of the body is an epidemic affecting 85% of the populations and has an incredible variations of manifestations that impact on health.
Are you fond of sugars and breads in your daily diet?
Have you had vaginal yeast or bacterial infections?
Do you have any skin issues? Reactions or itchiness?
Have you ever had any fungal infections?
Any changes in your nails? or feet?
Any body odor?
Does your PMS seem worse than before? (more painful or irregular?)
Does your tongue have any whiteness to it?
Depression or mood swings?
These are some things I experienced and if you answered yes to more than just the first question, I would highly recommend doing a spit home test, or you can have your doctor test your stool for it. There are also blood tests you can take at home.
Candida overgrowth can become completely debilitating. I got to the point I couldn't get myself to exercise either. By cutting out processed foods, sugars, breads, even most fruits due their sugar content and some vegetables due to their starch content, and adding anti-fungals and quality fermented foods to my diet within about a week I started recovering. When I felt the brain fog starting to lift couldn't believe it. I will be adding some foods back into my diet later on, but for now I really want to kick this thing fully and never feel like that again.
Hope that was helpful.
Best regards, Seraphim
I didn't mention this before, but I was losing lots of hair too, it started getting thin. I reread your story and I have so much reality with it I am certain you have candida overgrowth. I had lots of symptoms and I do not list them all in my blog. You are more than welcome to message me and ask me anything. I would be so happy to help.
That's fantastic 😀😀 I'm such a believer in gut issues being at the root of autoimmune problems too Hidden . I am currently awaiting results of stool tests, do you mind me asking what fruit & veg you cut out?
I can only speak for what has been working for my body, different bodies can tolerate things different. Also the book I am reading actually recommends to ease into it and not make a dramatic dietary changes the first week. But for me I was already really close to eating how he recommended all I had to do was stop ingesting sugar or anything that turned into sugar like breads, or anything like sugar like honey.
The vegetables I did have to remove from my diet were potatoes, squash, carrots, I mainly eat lots of green veggies, and red bell peppers right now. But that is only temporary. I will be slowly adding them in again, basically I have been starving the candida along with using GSE and other natural antifungals. Fresh herbs are amazing with their antifungal properties, ginger, garlic, rosemary, oregano, etc there are lots. I used to sometimes use them, but I would cook them. Now I use them everyday but I don't cook them, I add them to my dish after the cooking is done and stir it into my dishes. Also I didn't grow up with any quality fermented foods in the house, like yogurt. So I have been learning to like them. I eat one bowl of yogurt (about 4-5 tbls of yogurt with blueberries everyday. Right now the only fruit in my diet is blueberries and green apples.
I know some people may read this and may think it is hokey pokey, but I am telling you, within days of giving my body the right things it was obvious I was finally starting to recover. The funny part is right prior to this I thought I was eating pretty healthy too.
The thing about candida is it breaks out of your gut, gets in to your bloodstream hitching a ride to anyplace in your body. Then sets up shop and colonizes. And its byproduct is toxic to us. Once it does this you are basically systemic. I was severely systemic
It amazes me how candida overgrowth can fly so under the radar and just tear the body apart. Now knowing what I know and been through what I have, I am seriously a changed woman for the rest of my life. I will never look at food or peoples health the same again.
No you don't have to convince me 😉 I'm going down the functional and natural route reversing my autoimmune so I'm on the same page as you! I'm just awaiting results of a stool test to know what exactly is in my gut and then I'll get set to ridding it, I also have EBV so have to look into suppressing that also.
Do you find yourself hungry?
Well, I was in bad shape. For the past 3 years I did not have much of an appetite, commonly only eating like 1-2 cups of food a day. Occasionally more but mostly, I wasn't hungry. Looking back I think I knew food was making more sick. After the first year of my not really eating I stopped getting nauseous, and much less episodes of being dizzy.
So my point is, I actually just got my appetite back like 3 days ago and am finally eating 3-4 times a day now. I can't say that I find myself hungry but more like I actually do get hungry now. But after I eat I am fine.
To be honest the hardest part was about 4 days in when I was confronted with chocolate at the store. It took everything I had to get out of there and about an hour afterward to simmer down. But 2 days later when confronted with the exact same situation I was fine. I mean I could recall the fond memory of the chocolate but my body wasn't throwing a complete fit about wanting it.
If I were to take a guess, once you break the sugar/bad carbs addiction you start basically retraining your body to recognize full is full without the need of those things to complete that feeling.
Hi Snnx, I'm sorry you're feeling so ill. Have you been diagnosed with Hashimoto's Thyroiditis? When I was 16 I had exactly the same symptoms that you describe. I would come home from school and go and have a nap. My doctor continually gave me iron tablets for 4 years. I became more and more anaemic, and gained weight. It wasn't until a new doctor joined the practice that after spending a week in hospital undergoing many tests and finding nothing, that my thyroid levels were tested and were found to be very low. I don't know what your doctor is doing! Go back and ask him to order complete thyroid blood tests. When I was diagnosed, I was first given 100mg thyroxine daily, for 6 weeks and then tested again, and the dose increased to 200mg daily and so on. The correct dose for me then, was 300mg daily. It takes time for the thyroid levels to increase and get your metabolism working properly, but I gradually got better and better, much better after 2 months, able to think clearly, anaemia much better, hair improved, began to loose weight and have more energy. I'd say, probably after 5 months everything was fine. If this is Hashimoto's, it does need to be diagnosed correctly and quickly. I was 19 when diagnosed. I had lost confidence completely. My A levels were rubbish. Later, I became a teacher, got married , had two children, took a B.A. degree, and much later, a Masters. I'm not saying this to show off, but to assure you that the future can be wonderful for you once you you get a proper diagnosis and the treatment you deserve. Good luck, I hope everyone works out for you 😊
Oh dear! sounds like me I'm now 50 but was diagnosed with hypo at 35. Been on Levothyroxine 25mg ever since. Blood tests say normal but this January I found out I had PA and Vit D deficiency, they seem to go together. I've only just heard of NDT. Do GPs recognise this as a treatment? I need something as bloods say normal but I feel awful, terrible aches and pains and tired all the time I've gained weight over the years and can't seem to shift it. I'm in a Catch 22 situation as i'm too tired to exercise!!
Is there a blood test for T3? I think I was only ever tested for T4.
Thanks and good luck to Snnx. We all know how you feel.
Now this is going to sound harsh but I really mean it in the best way.
I know exactly what you're going through. I had problems since I was about 17 and got very ill suddenly at 21. Two years later I was diagnosed and put on levothyroxine.
I was happy that we'd got to the bottom of the mystery that had robbed my youth but I was perplexed because I never felt much better. Like you, I was (am) plagued with constant symptoms of 'not quite the full ticket'. I used to feel sorry for myself and was aware that I was struggling through life at half mast. Like you, I was getting a degree and felt as though I had to work twice as hard as everyone else.
However, 4 months ago something very awful happened to me. I won't go in to more details because this is not a post about me, but basically it has ruined my life (I also had to quit uni weeks before my finals).
I have had time to reflect. When I had thyroid disease (I still do of course) I could still do everything a normal person could do. I could still study and do well, as long as I put the work in. I could still have a job. I could still go places. I could still enjoy a good film. I could still dress up and feel pretty. I could still feel 'settled'. I could still be 'me'.
I would do anything to have that back. In fact, I have learned to love my thyroid problem. People with auto-immune disorders rarely catch infections, so I realised I had a bit of an advantage with the likelihood of antibiotic resistance in my life time.
Also, of all the auto-immune diseases, thyroid is the easiest to treat. Yes, it doesn't 'cure', but you have no risk of sudden death if you forget to take your pills one night. You can still be free.
Take a look at your symptoms again (the ones you have highlighted in your post). Now ask: who doesn't get hair falling out and dry skin and weight gain? How many other people have thyroid problems? Is it almost so many that I could class myself as normal? How bad and debilitating really are these symptoms I list? Am I in constant agonising pain? Am I still able to leave the house and go and see friends?
There is your answer and hope. Of course, you can try NDT, and other therapies to help the symptoms, but overall, relax and embrace what you have. It really could be a lot, lot worse, trust me. x
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