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Case Studies - Hypothyroidism

sharing storyWe are collecting case studies from people who have become well through taking thyroid medication, and from people who are still suffering symptoms of thyroid disease despite taking thyroid medication.

If you would like us to use your story as a case study, you can submit it to us online here

Natalie's Story

Main problems are chronic tiredness, low mood, fatigue, muscle spasms and stiffness of muscles and joints, which have plagued me since 2001. I saw my doctor on several occasions but they never did the appropriate blood test and always offered anti-depressants.  I never wanted to go down that road and eventually told myself maybe it’s just the way I am and that I needed to learn to live with all my symptoms.

I got lost in alcohol for a very long time and that’s what got me through the 6 years from then until I  became pregnant in late 2007. I stopped drinking and when I had my baby I realised it wasn’t just about me anymore so I went back to the doctor.

He again prescribed anti-depressants, which I reluctantly took (thinking about my son and not me anymore); he also took blood tests.
A week later I was asked to go back to the doctor (after I had started the anti-depressants!) and was  told I had an underactive thyroid.  He told me to stop the anti-depressants and, with a great big grin on his face, he assured me every symptom I had would disappear when my thyroid was under control!  

Two years later I still have all the symptoms (I even take an extra 25 mcg T4 in desperation, to help the tiredness (it doesn’t) I had 9 years ago!  Since having my son I have seen an endocrinologist but they say there’s nothing else they can do to help.  

Now comes the T3!  I have begged my doctor to help me with combination drugs but he won’t.  I can’t find any help on how to buy it (unless on steroid sites) and I’m
terrified I’d feel worse than I do now, if it all went wrong.

I have read that it would help with my depression and also fibromyalgia that was diagnosed last year, which I also read is connected to hypothyroidism. Help me, please, in whichever you can.  I am 30 years old and appreciate that there are people worse off than me in the world but I really feel like I’m in my 50s!

August 2010

Stephanie's Story

Where do I start?  I'm 27 years old.  In February 2010, I gave birth to my beautiful son Harri (10lb 14oz).  Afterwards, I felt an overwhelming sense of exhaustion; I put this down to giving birth and having a new baby etc, even though he slept very well.  

Throughout the year I struggled with day to day life i.e. getting dressed, going out, staying awake, and I felt very low.  I refused to listen to people's comments that I may have post-natal depression as I was still a happy person inside, I was just 'restricted'.

I decided that getting a job would help and that having people to talk to and a routine would get me back on the right track so I got a job doing night shifts at a nursing home for elderly people.  Needless to say this made things a lot worse.

The fatigue was immense. I had hardly any energy, I couldn't walk to the shop across the road without my legs almost giving up!  I was spaced out and forgetful, I felt paranoid that the staff didn't like me and was constantly questioning myself. I felt insecure, afraid and alone.  

I got so low, I eventually plucked up the courage to visit the doctor. I broke down in tears in front of him. He asked me questions (trying to work out whether I was depressed, which I thought I was at this point). He asked me if I had ever had thoughts of suicide, to which I answered no. He suggested blood tests which resulted in my hypothyroid diagnosis (underactive thyroid).
I was prescribed levothyroxine 25mcg and after months of blood tests I am now on 75mcg and awaiting an appointment with an endocrinologist.  

I can now safely say I feel around 80% better than that first visit and I am happy.  I am heading in the right direction though I know it could well be a long road ahead. I am just very thankful that I found this site as it has made me far more aware of my condition than my doctor did.  

Having a thyroid problem wasn't explained to me at all. I was just told to take the meds!  Sites like this one are amazingly beneficial to people like myself who are none the wiser about this awful condition without it!


Rwth's Story

Way back in my early infancy my parents noticed I was not developing as I should.  At 3 months I could maintain a sitting position, but never went into one unless I was propped up. I was fat and very lethargic. After badgering the GP, (before the NHS) they obtained a referral to a paediatrician with a knighthood and an interest in endocrine problems.  He did some tests and I was almost immediately put onto thyroid extract, which you could then buy across the counter. After only 6 months of this, the improvement was marked.  I was normal. I have seen photographs before and after, and the difference was dramatic.

Fast forward to puberty when in the natural course of things, it became a problem.  Periods went on forever, I was taken off thyroid extract and put on to iodine, which only made matters worse.  My father insisted on my going back to the thyroid extract and I did improve slightly, but was sent back to a new consultant, who prescribed a slightly higher dose.  This worked like magic and when I was 19 years old I was put on to thyroxine, being told no more than that “it was better”.

I became very annoyed that this had happened to me. I went into denial for several years.  I took the tablets when I remembered - very often though, I didn’t take them, so was never quite well enough. I would lash myself into a rage to get my housework done, substituting adrenaline for the pills.  How daft was that? 

I was told it was in the family.  My sister had surgery for overactive thyroid, and my great grandfather was reputed to have some sign of it.  Eventually, I found a new GP, who was not only interested in hypothyroidism but was prepared to work with me to find the best dose.  I had six-monthly TSH tests and I was allowed to be near the top of the normal range, so I felt well and active. 

After I had cancer, I found that my TSH results were all over the place because of 6 months' precautionary post operative chemotherapy and it has now just settled down again. However, I had to explain to the GP that I felt better on 150 mcg and regardless of the TSH results I did not want to go back to 125 mcg, unless I was ill. 

I diagnosed hypothyroidism in a dear friend who was having serious muscle aches.  Her doctor is the GP for a busy university practice where they actually have a teaching hospital and where the consultant asked for photographs to be taken of her goitre, as she had never seen one as bad as that. She had Hashimoto’s, but her family had a history of thyroid imbalance. Her GP keeps saying that her muscle problems are due to fibromyalgia.

A friend of hers, who had recently become a GP, once said to me “Are you taking your tablets? You sound a bit thyroidy”, and this was a breakthrough for my thinking.

Now, whenever my voice goes croaky, I know I need to check my dosage, and compliance.  The fact that the effect is not immediate, but builds up over time makes remembering difficult. The move to blister packs was another great help in compliance.  One of the problems of remembering to take the pills was trying to remember whether I had taken them or not. A routine of not leaving my bedroom, using those little pill cups they give you in hospital, and making as much of a ceremony of it has been built up, and I don’t often forget these days.

I think the ignorance about this disorder is profound and obstinately persistent.  A doctor who took an opposite view was struck off.  I couldn't be more angry about this.

Even so, I am still very concerned that fluoride is still being added to the water in my area.  It was routinely prescribed for hyperthyroid symptoms.

A paper on the Thyroid UK website relating to the TSH/T4 feedback loop was most illuminating, and after I gave a copy of this to my GP, he has taken a different attitude to my case and has increased my dosage to 200 mcg. This was in the face of the indication that elderly people need less dosage.  I wonder if my treatment for high blood pressure and anti-cholesterol medication have any effect on this?


Collette's Story

I have suffered with thyroid problems for the last 27 years and still the doctors and consultants have not been able to get it right.

I was diagnosed with an overactive thyroid when I gave birth to my daughter 27 years ago. I was given carbimazole to try and regulate the thyroid. To cut a very long story short, I have had two thyroidectomies but my thyroid  remained over-active.  To be honest I have always had a huge worry about being fat, so although my thyroid was dangerously over active and I was very slim I was HAPPY.

Because of the strain the thyroid was putting on my body my consultant suggested I try a tablet that would destroy my thyroid and it could then be regulated by thyroxine. 

I was very worried about putting on weight if the thyroid was to become under-active and was constantly reassured that with regular blood tests and check-ups this would not happen. Well guess what?  IT DID!

With the hospital constantly cancelling appointments and blood not being checked regularly I started to put on the dreaded weight. I have never been so unhappy.  I wish I had never taken that tablet.

I saw a doctor a few weeks ago at my surgery, who I had never seen before, and she could not believe that no one had picked up on the fact that my thyroid had more or less stopped working for the past couple of years. I had been taking 225mcg daily of thyroxine but am now on 250mcg daily with the possibility of increasing to 300 mcg. Why is it so hard to get it right?  How much longer do I have to suffer before the doctors listen to me?


Gaynor's Story

I was prescribed levothyroxine last year by a specialist who monitored my progress up to a level of 200 micrograms daily.  At this level I felt well and all the symptoms I had had (tiredness etc.) were gone.  I was so relieved that I was not suffering from some mysterious illness that no-one could diagnose.

Here we come to the problem; my blood tests were all "within the normal range". To cut a long story short I asked my GP to refer me to a specialist in the area of endocrinology and gave her a name that I had found. Bingo! Within three months I felt well and able to go about my business with pleasure. What happened next just put me in a spin, my levothyroxine tablets were low and I duly went to my GP and asked for another prescription to which she replied that I should be on a "repeat" meaning that I wouldn't have to go to the surgery to see a GP every time I needed a new prescription.

Five days later the last GP I saw telephoned me and demanded that I return the prescription that she had given me immediately. I asked why she was not allowing me to have levothyroxine, to which she replied that my past blood tests were "within normal range" and I should never have been prescribed levothyroxine.

My worry is that I will fall again into bad health now I have abruptly stopped medication.  I feel very angry at this point and feel that the only course of action is to contact the specialist to discuss the position I am in but am I putting specialist against GP?


Suzanne's Story

I felt sick and wiped out all the time every day. I felt I was struggling up a mountain with a weight on my back. Then one day I took myself to the well women clinic thinking I may be pre-menopausal. They did my bloods and found I was hypothyroid.

My GP put me on 50 mcg thyroxine then up to a 100mcg.Things got so much better. The weight had been lifted from my shoulders and I was happy again. However, after about 4 years I felt ill again tired and achy and sick, had to re adjust my thyroxine down then up like a yo-yo.

My bloods are never the same every time they are taken. I get a period of feeling well then it all goes to pot. Also I’ve been allergic to certain types of thyroxine. Have found TEVA make suits me fine.

I feel my GP does not realise that I need to adjust my dose according to how I feel – not my blood results. I think this is a serious message that GPs have to know so that we can work together.

July 2010

Tony's Story

My hypothyroidism nearly led me to suicide. I was diagnosed after becoming ill about five years ago. I returned to my doctor over and over again with pages which I had printed off the internet and he eventually agreed to refer me to the endocrinology department.  After a year and a half of them not listening to me, losing my notes and losing my test results I felt totally defeated and decided to take control of my own medical care

I was told persistently to reduce my dosage to 150mg but every time I did I felt dreadful. I decided that I didn't care if the blood results say my dose is too high I needed at least 200mg of levothyroxine a day. Further tests revealed that my stomach lining was not absorbing vitamin B12 so three monthly injections were prescribed which did improve my energy levels. I still needed to take the higher dosage of levothyroxine to feel better and the endocrinology dept were going nuts with me.  I asked them, "If my dosage is too high then why am I not showing signs of the opposite to hypothyroidism – hyperthyroidism - such as losing weight, shaky hands, sweating etc?" Needless to say they couldn't answer. They warned me that if I continued to take the higher dosage I would risk damage to the heart muscle.

I have discovered that as a direct result of not being able to get hold of natural thyroid hormone, I need to take matters into my own hands.

I also discovered that certain brands of thyroxine worked better than others. A friend of mine suspected that this could be down to the coating on the tablets (some being easier to break down by the stomach than others) so I set my alarm clock to take them half an hour before I get up so that I always take them on an empty stomach.

The advice I would give is the following: always take the thyroxine on a fully empty stomach and have nothing to eat for at least an hour after taking them, and have a blood test for vitamin B12 deficiency (Pernicious anemia), it could be adding to your symptoms (especially if you have autoimmune thyroiditis).

My doctor once admitted that he knew very little about a lot but that a specialist knew an awful lot about very little. I would say that, in my experience, neither of them knew very much at all!

Feb 2010