I was diagnosed at 16 with hyperthyroidism and was put on carbimazole and propranolol to help lower my heart rate. I was taken off the approximately 3/4 years later and given radioactive therapy to shrink a growth on my thyroid. I was advised that this could mean I may become under active eventually. Inevitably, I ended up becoming under active some time later. I was put on levothyroxine (unfortunately I can't remember dosages or time frames). At 22 I had my daughter and from memory I had quite a good pregnancy and to this day she still is very healthy! A couple of years later I was diagnosed with depression but wasn't entirely sure why I felt that way, and I was put on antidepressants. (Flag - thyroid issues can cause depression) I took antidepressants for a couple of years. Eventually I decided to ween myself off of them and had looked into health and fitness, which led me to eating a clean diet and exercising a lot. I can't remember if it was at this point I stopped taking my thyroxine, but at some stage I did because I felt that better nutrition was how I wanted to look after my body. However, I know from blood test results during this time, stopping medication wasn't the best idea but I didn't want to take medication for the rest of my life, particularly as I was only about 24 at this time. When my GP asked me 'why aren't you taking your medication?' I ignorantly responded 'is it going to kill me if I don't?!' but my Doctor just stayed silent, probably in disbelief. If I could go back and smack myself across the face I would.
Throughout my adult life I continued to suffer with mental health issues. I would have episodes of extreme highs and then incredibly depressed. It was affectig my relationships and how I felt at work. I eventually referred myself to the Mental Health services where I eventually was diagnosed with Emotional Unstable Personality Disorder and Mixed Anxiety Disorder. During this time I recall taking my thyroxine medication again as it was suggested that this may have contributed to how I felt. At one point I was given medication called Sertraline and for my first dose, was told by the mental health doctor to take 300mg on the first evening. The next day I was to take 600mg from then on. As this was a new medication I made sure I read the leaflet from front to back, and the leaflet even stated that beginning doses should typically be started at around 50mg and increased if required, so I was a bit confused and slightly concerned that the Dr felt I needed such a high dose. I did as I was told. At 9pm I took it on an empty stomach and the next thing I remember was being woken up at 1.30pm the following afternoon by my friend frantically trying to wake me up. That day was my 28th birthday. When I had taken the medication at 9pm I had passed out and not plugged my phone into it's charger and my battery died. My friend panicked because she knew about me starting medication and sensed something was wrong when she couldn't get through to me. An ambulance was called and I was taken to a&e because my blood pressure and sugar levels were dangerously low and they couldnt pick up a good trace of my heart on the EKG. That experience traumatised me. At that moment I stopped taking both levothyroxine and the sertraline, because my trust in medicine was gone. Albeit, now it seems irrational and irresponsible, when you feel that you have been treated negligently by a doctor who is supposes to help you, you lose all faith in everything. Every night (even now) I have anxiety attacks about dying in my sleep.
After stopping the medication, over the next few years I began noticing other health problems. I was diagnosed with bone disease in my spine after suffering from sciatica. I have joint/muscle pains and cramps regularly. One night I was chewing on my finger nail and my bottom tooth broke. I wouldn't have been as surprised as I was if my nails were hard, but my fingernails had become thin and weak. A few months later, another tooth broke as I drove over a pot hole and my teeth slammed together.
It was common for me to suffer with constipation or diarrhea. Flashback to me aged 3 in hospital after bleeding from my ears, nose and bowel with no explanation..
Back to the present, I would always be cold. No matter what, my hands and feet would always be ice cold. Even at work in the office I would sit with a hat and coat on, knowing I would sweat and stink by the time I would get home but I could not stop trembling from feeling cold.
Constantly feeling like I had no energy and struggling to concentrate or remember anything, but being a single Mum working a full time job with unsociable hours and often being kept on with no notice, I was expected to just get on with it. No one would truly understand and any time ai would talk about feeling stressed or unwell, it was boring. I felt depressed and fed up that I would never feel better again.
Eventually, at 2am one Monday morning I woke up sweating, feeling extremely nauseous, short of breath and feeling my heart racing in my chest. Whenever I would try to sit up I went dizzy and felt myself starting to pass out. I knew something wasn't right. I called 111 (the non emergency number for medical advice) and after having a conversation with the operator they advised I go to a&e - my home from home! So I got an Uber to hospital and was admitted for the day and following night for observations. They discovered some minor problems with my heart but because I had always had chest pains as a child, it was put down to episodes of pericarditis. Now I don't understand how I can have an episode of that, but to explain it better, whenever I lay in the bath, or in bed or sit in a certain position I get chest pains. I spoke to my GP about this a few years ago, bearing in mind I've had these pains since I was a child, and my GP's response was 'all women get chest pains'. To me I felt like he thought I was a hypochondriac. So I never discussed it again. Back at hospital I had numerous scans and EKG's/ECG's that showed a right bundle branch block and some other fancy words, but this is aparently something a person with 'normal' health can have and it isn't a concern. I was told I had iron-deficiency anemia and my kidney function was low. In all honesty, and I don't care how dramatic this sounds, but I generally felt like I was going to die. I was put on ferrous sulfate and put back on levothyroxine, after having multiple doctors give me the death stare when they discovered I had stopped taking my medication. I was to have a kidney scan later in the week - which was fine, but required further blood tests to check up on it.
To date I have been off sick from work for 3 weeks. Every day is different, to the point where I feel like this all feels in my head and then later that day I feel just as bad as I did when I took myself to hospital. I called 111 again a couple of nights ago after waking up at 1.30am sweating, feeling short of breath and dizziness and having diarrhea. The paramedics checked me out and said everything seemed fine but my heart matched the report on my discharge paperwork - so it wasn't new information that it was irregular. They told me a&e would kick me out if I had diarrhea and they suspected I had probably picked up a bug. Well I havent had diarrhea or vomitting since, but I stayed home and slept it off. I'm still feeling nauseous and extremely anxious. I am currently on 50mg of levothyroxine and 200mg of ferrous sulfate twice daily on alternate days. I anticipate that I will need to increase the dosage soon. It's just a horrible journey and illness to have. Granted, there are a lot worse out there and I am grateful every day for the level of health I still have. But when it cokes to affecting how I have no energy to entertain my own child, concentrate on work, remembering simple things, having to worry about what I eat, constantly anxious that I might not wake up tomorrow.. I just want to be in a place where I am well enough to go out and not stress that I need to be near a toilet if I become unwell (hello anxiety) and have the energy to be a better parent and go to work and feel like I'm making a contribution, not stressing that my sickness record will get me sacked!
All the best to anyone else here who stuck through that story, and if you too are suffering with this condition or any other illness then my thoughts go out to you.
God bless x
Written by
Hypo_juan
To view profiles and participate in discussions please or .
Sounds like you've been severely neglected by your very ignorant doctors. So sorry you've had to go through all that. But, it doesn't have to be that way. You need to take charge.
When my GP asked me 'why aren't you taking your medication?' I ignorantly responded 'is it going to kill me if I don't?!' but my Doctor just stayed silent, probably in disbelief.
No, probably not in disbelief, more likely he just didn't have an answer for you. One thing you have to understand right from the start is that the majority of doctor know next to nothing about thyroid. Which is why we, as patients, have to learn as much as we can about our disease.
So, the first step to wellness is getting hold of, and learning to understand, your labs. When did you last have a blood test? How long have you been on 50 mcg levo? 50 is a starter dose, and you should have been retested six weeks after starting it. Do you have a copy of your latest labs? If so, post the results and ranges on here. If not, ring the surgery and ask for one. If you are in the UK, then it is your legal right to have a print-out, don't settle for anything less. You do not want your results read out to you over the phone, or jotted down on a piece of paper by an over-worked receptionist. That way, mistakes creep in. You want a print-out, which is going to be accurate.
After such a long time hypo, and being so badly treated, it is going to take a long time for you to recover. But, it can be done, with patience and understanding. But, even the shortest journey starts out with the first step. And your first step should be on Monday, when you ring the surgery to ask for your results. Good luck.
Thank you for your reply! It was very encouraging, particularly as at the moment it feels like there's no light at the end of the tunnel.
I have started reading up on nutrition, foods to avoid and include in my diet. Typically it's all the fun stuff that needs to be restricted but in efforts to make a recovery it needs to be done, and oddly I'm looking forward to trying different meals to feel better.
I was put on 25mg of levothyroxine on 12th November when I went to hospital, then a few days later when I returned for a scan on my kidneys I was still feeling unwell and they advised me to go back to a&e where another doctor advised me to increase the levothyroxine to 50mg. He advised that I have a blood test to check my thyroid levels in a few weeks because it may take some time to get in to my system. I had a blood test last Wednesday specifically checking my kidney function but there was no request for a TFT. I am planning to see my GP Monday to enquire about increasing the dosage as I remember years ago I was on approximately 100+mg (I can't recall the specific amount). Once I get the results back I will post them here.
Be careful with recommendations for food. Some people get a bit over-zealous, and recommend cutting out all sorts of things that really don't need to be cut out. Ignore suggestions to cut out broccoli and cabbage, for example. As you have no thyroid that really doesn't apply to you. Gluten-free might help, but doesn't always. Don't cut out all carbs because you need carbs to convert T4 to T3. And, if your diet is too restrictive, you will be low in nutrients, and that's not a good thing. A clean, balanced diet is what is needed.
Hello, I was diagnosed with nodules on my thyroid after having different blood tests. I saw my GP complaining of rapid heart beat, not sleeping well feeling very tired to the point of exhaustion, eating more than usual but losing weight over a stone and a half, quickly. My local hospital had a wait of 20 weeks to see an Endo. Having worked for the health service and Social Services I asked to be referred to another hospital which I only had to wait 4 weeks, the longer journey was well worth it. The Endo also suggested that one of the larger nodules had gone toxic and prescribed Carbimazole 15mgs twice a day and propranolol 20mgs 3 times a day. He increased the carbimazole but unfortunately I had a severe reaction to the drug after 6 weeks and had to stop taking it. The Endo wanted me to have radio active iodine treatment which after some research I was not prepared at that stage to go through. Mostly because I cared for my very young grandson while my daughter worked three days a week. The baby was fine with me but my daughter had the separation issues and was not coping well going back to work. The treatment as you know means you cannot be with young children for weeks. I asked to see how things progressed before agreeing to radio active iodine treatment. My Endo was really supportive when I explained why I didn't want the treatment and did not force me or push me into changing my mind. He also agreed because my blood tests results were lowering to decrease the propranolol so more than a year on I am not taking any medication and I am feeling OK. I am due another blood test in December and hope it will be good news my symptoms seem to have abated.. I am writing to help you know that any thing can happen sometimes the body can heal itself I am fortunate but I don't take that for granted I may need treatment for my thyroid but do research look what you can do for yourself as well. It is always your decision. I am so glad I didn't rush into radio active iodine treatment and weighed up what that meant not only for me but also my whole family. Good luck and don't be afraid to ask questions ask for time to think and talk things over with family and friends.
Thank you for sharing your story and I am so glad that you are feeling well. Fingers crossed that your blood test in December gives you good news and that you don't need to revert to medication again.
The radioactive treatment that I had was when I was about 20/21 years old (from memory) and I wasn't allowed near pregnant women or young children, which was slightly difficult as my job involves interacting with members of public on a daily basis! It wasn't too long after this that I became pregnant and thankfully my daughter is healthy and wasn't affected by any of the thyroid treatment or medications. Unfortunately though I can't remember if I had any side effects from the treatment, and as you and many others may feel, when you become unwell so often it all seems to melt into one long period of sickness! However, I am glad that you didn't need to go through the treatment, and whatever you are doing is working well for you. This illness really is all about learning what works best for your body, and what may be a success for one person may not work well for someone else.
I am yet to have my appointment with the endo doctor but hopefully it's not too long of a wait! I saw a video on Youtube of someone having a needle kn their neck to take a sample of their thyroid! I've decided to no longer watch videos!
So sorry you have had such a terrible time. Grey goose has given you excellent advise but things in the Thyroid world move slowly so patience is needed and then one step at a time.
It's a marathon and not a sprint but hopefully you will soon start to feel a little better and hopefully this will continue. This forum is run by Thyroid U.K. and they also have a web site which helps a lot to understand more so you may find that interesting but shout out if anything confuses you.
Thank you for the encouraging message! It's so frustrating when you're taking medication but still aren't feeling much better. I imagine that my anxiety is probably a big contribution to that too, but I will hopefully be seeing my GP on Monday.
Thanks again, and I will have a look at the website too!
Yes over the last few years more 'rules' have become apparent to try and feel optimal and thankfully they seem to work but doctors are usually in a time warp so aren't always as clued up. I sometimes wish so would join this forum to keep up to date but also to read how much some of us suffer and that it's not one little pill suits all.
I get chest pains. I spoke to my GP about this a few years ago, bearing in mind I've had these pains since I was a child, and my GP's response was 'all women get chest pains'.
I was told I had iron-deficiency anemia
These two statements from your post are almost certainly related. Having very low iron can cause chest pains and women are often low in iron.
Several of the symptoms you've mentioned are on the list.
Another thing that is extremely common is low magnesium and it can cause muscle spasm, twitching and cramp - and the heart is a muscle. You might reduce your chest pain by taking a magnesium supplement. There are lots of types of magnesium supplement available. You just have to choose one that appeals to you :
Another point I wanted to make is that replacing thyroid hormones that your body can no longer make is not the same as taking "medication". In order to stay healthy you have to have the right amount of thyroid hormones in your body, and if you can't make it then you must take it. Think of a Type 1 diabetic who can't make insulin and has to inject themselves with it. They are in the same boat as someone who is hypothyroid and has to take thyroid hormones. At least we don't have to inject them.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Hyper symptoms but low heartrate
Hypo to hyper on low dose of levothyroxine
Hypothyroid and Anemia
Possible low adrenal function
