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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

I am a 51 year old female who was diagnosed over a year ago with an underactive thyroid and only on 25mcg meds.

I am a hard working person who owns her own company and a bit of a workaholic, a working mum, raised two girls and now a granny, so sitting still was never something I am used too. 

Fortunately I have always had good health. However, over the past 6 months I have gained a lot of weight (and I have been on a strict diet), felt tired and had hair and nail problems and dry skin. I’ve been plagued with numerous illnesses - shingles, colds, infections etc, gum and toothache but still managed to keep working etc. I’ve never ever felt so drained, so tired. I’ve had headaches that are migraines, upset stomachs and been feeling listless. 

I have not been sociable, which isn’t me as I am a party lover.

Three weeks ago, I came to a blow and had to be hospitalised and had every test done. It turns out my thyroid has gone AWOL and I feel awful. 

All this could have been picked up by routine blood checks.

March 2012

 

My health problems started way back in 1974 when, as a young, fit and healthy 23 year old, I developed an extremely dry and sore vagina.  It took 2 years for my GP to refer me to a gynaecologist who stated that the problem was due to an ulcerated cervix which would need to be cauterised.

Unfortunately back in those days patients didn't have the rights which they now have and whilst under the anaesthetic, the specialist decided to perform other procedures that I had not given permission for and this resulted in a perforated uterus and very bad haemorrhage but did nothing for my problem. 

When I complained I was told that there was nothing wrong with me, that it was all in my mind and that my problem was that I was frigid and was being referred for psychiatric treatment.  This I refused.

Over the next 18 months my health spiralled out of control.  I was putting on weight although hardly eating; my hair began to fall out; my skin became dry and coarse; everything I touched went wrong; my periods stopped; I became very argumentative – it was like having a very serious case of PMT - I really did think I was having a nervous breakdown.  My husband had to drag me to our GP - I was so ill I had not noticed a lump the size of a lemon on my neck.  I was sent to the hospital and diagnosed with Hashimoto's disease (my thyroid had stopped working totally).  I was put on Eltroxin.

It took a long time to feel better but slowly I began to get there.  I never really recovered totally and I did find that the GPs all had different ideas on what dosage I should be taking.  Nobody would listen to me when I said that I couldn't really control my weight. 

In 2001 we moved house and my new GP decided to change my tablets to levothyroxine.  I knew within a very short time that these tablets were not for me but was told that they are exactly the same as Eltroxin.  I then decided to do some research and found Thyroid UK and learnt all about Armour thyroid.  I made several attempts with my GP to get Armour but was told that it was no good for me. 

In 2005 I moved to Scotland and decided again to try to get hold of Armour.  I contacted a doctor in London who would do telephone consultations and he let me have Armour.  Unfortunately it just didn’t seem to work for me.  One minute I was OK, the next I had palpitations - I couldn't get the dosage right.  So I was right back at the beginning. 

Whilst on levothyroxine I put on 19 kilos; I developed food intolerances; insomnia; dry skin; brittle nails; dry coarse hair and exceedingly swollen painful joints.  I knew it was the Levothyroxine - I asked my GP here to put me onto Eltroxin and Tertroxin but he just would not do it.  He seemed to think I was pigging out and suggested I "see the nurse for dietary advice".

I turned again to Thyroid UK and discovered there was a thyroid support group that met in a house about 2 miles away from mine.  I contacted the person in charge of the group and she told me that Dr Barry Durrant-Peatfield held thyroid clinics at her house every 3 months. 

I read up on Dr Peatfield and read his book.  He obviously knew what he was talking about.  I got an appointment and went to see him.  On my return home from that appointment I sat on the bottom rung of the stairs and cried and cried.  A doctor had actually listened to my plea for help – it had been nearly 30 years since my diagnosis and nobody had really listened to me.  Dear Dr Peatfield did.

I started taking a mixture of T3 and T4 tablets as well as supporting my adrenals with supplements and am now a lot healthier. 

My swollen painful joints are a lot better, my hair is no longer dry and coarse, my skin isn't as dry, my digestive problems have improved and I'm sleeping like a log.  I have so much energy I feel I could run a marathon!  Now all I need to do is convince my GP to write NHS prescriptions (could be like getting blood out of a stone!) 

I have just looked at a photograph which was taken of me just before I went to see Dr Peatfield  for the first time – I look old, fat, bloated, ill and quite frankly, ugly. 

I thank God for the internet and the day that I typed “thyroid problems” in the search engine and up popped Thyroid UK.  Without them I would not be armed with the knowledge I now have.  They are very supportive and it’s good to know that I am not the only person to get the bad attitude from the GPs. 

March 2012

My history is of a period of more than two decades where I gradually became more and more unwell. Each individual symptom in the early stages may have been a minor symptom, but over the years have caused a great deal of problems in my professional and personal life, culminating in my losing my job as an IT professional after 20 years in varying positions with the same company, and a 25 year career. I was reduced to working 3 hours 3 mornings a week on the minimum wage, instead of my previous 41k salary.

I was sent for test after test, offered anti-depressants many times and eventually even sent to a psychotherapist.

However, after Dr Skinner started to treat me with thyroxine, especially with him looking at all aspects of my condition, nearly all these symptoms have now abated. 

I have now resumed my IT professional career at a more senior position, as I am now able again to work a full week in a demanding profession.

I believe that my GP has, at various times, believed that I was a hypochondriac, depressed, unmotivated, over-eating and under-exercising. I disagree with these diagnoses and believe that my achievements negate these (although for sure I overeat, but for lack of energy and not for gluttony).

I was disappointed that my referrals to Endocrinologists resulted in no diagnosis at all, although I was struggling severely with grinding exhaustion and ill health. I feel that the GP and Endocrinologists have failed to diagnose and treat my thyroid condition, prescribed unnecessary drugs at least 3 times, and wasted NHS funds by referrals to specialists for conditions that were in the end treated by treating the thyroid condition.

Dr Skinner’s professionalism meant that he took into account all the diverse symptoms, and made a good diagnosis of my fundamental issue of hypothyroidism.

With good treatment for my thyroid condition, I can now look forward to continuing my active lifestyle, with my career and hobbies.

Feb 2012

June 2011

Looking back, I began feeling 'not right' at about 30 years of age.  I had always been very active but found my gym trips and runs/bike rides increasingly difficult. I noticed I needed to sleep more and I couldn't tolerate alcohol or excessive salt or sugar. I self-treated by controlling my diet and sleeping lots.

When I got married in 2004 (aged 35) my eyes were so puffy that I actually thought I may need surgery to correct it!

I had a very regular cycle and had always suffered lots of pain during menstruation but had always been told that this was normal. However, I was unable to conceive. I went to see my GP who did some blood tests. I was fine, apart from a 'slightly' raised TSH but this was nothing to worry about, she said. My TSH was 5.4 at the time (why I did not investigate this myself I do not know. I work as a medical writer and am used to researching diseases and treatments). I went on for further tests, which revealed severe endometriosis. I had this surgically removed and kept trying to get pregnant, with no success.

I went skiing later that year but could only manage to ski in the mornings as I was so exhausted in the afternoons. We were doing an off-piste course and one of the group was a retired endocrinologist. We got chatting and I told him my story.

He got very angry and said that I would conceive if I was prescribed thyroxine and that I should push my GP for a referral.  Well, I did just that, was prescribed thyroxine and 2 weeks after starting it I got pregnant, aged 36.

It could be coincidence but I don't believe so. Everyone says how tired you feel when pregnant, and how difficult it is adjusting to the lack of sleep with a small baby, but I felt nothing but energised, well and happy.

I have since had another little girl. My eyes are less puffy. My nails don't snap. The skin on my hands doesn't peel away. I am just better. My GP keeps me limping on at a TSH of around 2 and a T4 at the lower end of normal, but I bump up my dose when I feel I need it.

I'm now 42, running around after 2 girls aged 4 and 2, working part time, exercising, when I get a minute and feeling mostly happy and well, if a little tired sometimes!

Update February 2012

After my second child, my GP reduced my levothyroxine from 125mcg to 100mcg as my TSH was 0.2 (strange how when its 'approaching' hyper they cut your dose, but if you're 'approaching' hypo they tell you its normal...).

I took this for about two and a half years, thinking that it was low, and constantly supplementing with additional broken up pills. I know I'm hypo when I get atrial fibrillations and feel absolutely exhausted after a relatively small amount of exercise.

There came a point where I decided that I needed to address my supplementing since everyone told me I didn't need a higher dose, so I stopped doing it. I then forgot I stopped doing it and about 3 months later started having carpal tunnel syndrome in my right hand, ulner (long bone in the forearm) nerve symptoms down both arms and numbness in both feet that started spreading up my legs.

Then I got numbness in my face and Horner's syndrome in my right eye. Terrified I had MS, I spent a couple of months ignoring it, then decided I needed to sort it out and, thanks to BUPA, got referred to both an endocrinologist and a neurologist by a caring GP who took me seriously.

She thought I just needed a bit more thyroxine but was happy for me to get fully investigated due to my anxious state (another symptom perhaps?). A few months later, an MRI scan shows no MS (quite a perfect brain actually, which I'm very relieved to find), some spondylosis of the cervical spine, potentially causing some pinching in the nerves in most of my neck vertebrae, but nothing really serious.

Electrical conduction tests showed some peripheral nerve damage in the fingers and feet of unknown cause. Interestingly, the consultant doing the test said that he saw this quite often in people with relatively mild hypothyroidism.

Finally, the endocrinologist called my GP 'clinically negligent' for reducing my dose and put me back up to 125mcg levothyroxine, which has completely stopped all the neuropathies. He wants to see me again in 6 months as he thinks there's scope for putting me up again to 150mcg, despite me being 'within normal range'. He treats the symptoms, not the blood results. Both my endocrinologist and my neurologist have admitted that, in the absence of any other diagnosis, hypothyroidism was the most likely cause of my peripheral neuropathy even though it is supposedly only evident in severe disease.

I thought I was going to die of a degenerative nerve disease because my GP lowered my dose and wouldn't listen to me. I know she is a good person who wants the best from her patients, but this was the effect for me. GPs need educating that being on the hyper side of normal is normal for some patients and isn't going to give them osteoporosis and heart disease. From now on I will pay for a yearly consultation with my endocrinologist to manage my hypothyroidism.

I am 60 years old and was given RAI just over 10 years ago for an overactive thyroid (I had a long standing multi-nodular goitre).  Little information was given to me at the time and I subsequently discovered from another consultant that I should not have been given RAI.

I went underactive very quickly and after begging my GP to do something I had a further two years on thyroxine during which time my health deteriorated badly.

I did my own research and, as well as finding NatureThroid, I also started using progesterone cream and vitamins that slowly brought me back to health. For the most part I feel well, good days far outnumber bad days.

I am still doing research and, as far as I can, I use natural God-given things that have been tried and tested by others and are non-toxic.  Things would have been so different if I had not taken matters into my own hands.

15/06/2010

At the age of 13 years I was diagnosed with an overactive thyroid. I was quite skinny so my mum didn’t think anything of it as I was eating lots of food each day; I have a really big appetite.

On the night that I was diagnosed I was rushed into A+E because my mum and dad thought I had meningitis as I had a rash all over my body which didn’t disappear and I was sweaty. I had lots of tests, which was quite scary, as I felt really ill and wasn’t sure what was happening because I was so young.

I had quite a few symptoms indicative of a thyroid problem, including being really warm, not putting on weight, being very excited and overactive eyes.
 
We were placed in the children’s area and had to wait about 8 hours for them to tell me what it was.  They then told me I had Graves’ disease and an overactive thyroid. They discussed what would happen, eg tablets, surgery, iodine etc and I was kept in hospital for a while.

I was started on tablets to which l had an allergic reaction so they had to keep swapping tablets and doing regular checks and tests.

When I was 15 I then had radioactive iodine after being on Propanolol for a few months. It was Christmastime which was difficult for me as I was away from my family and had to eat Christmas dinner alone.
 
I now have an underactive thyroid; it is quite strange being the opposite. I am now starting to put on weight; I’m always cold, tired, have eye problems and have to wear glasses. I have had stomach and chest pains which doctors now think are related to my thyroid. I am now 19 years old and my memory is the same as that of an 80 year old woman. 

Remembering to take my tablets is hard and I also have depression. For everyone else with thyroid problems, who are still suffering, don’t give up. Things will get better.

14/03/2011

I was diagnosed with an underactive thyroid during 1992.  I had been working at a sewage treatment works as an engineer and was suffering from extreme tiredness and exhaustion in the months following this.  I thought I had the symptoms of Leptospirosis (Weil's Disease) due to having been in contact with contaminated water (these are symptoms of a form of jaundice spread by rats urine in sewers) and requested a blood test from my GP.

The result showed an underactive thyroid (hypothyroidism). I was prescribed thyroxine (I think 50 micrograms per day then) and also got a medical exemption certificate to get free prescriptions.

I did feel an improvement in my energy levels. My mother said I was never very lively as a baby and she also wondered whether exposure to high electromagnetic fields at work could have worsened the condition (I had been working at the British Steel Teesside Lackenby beam mill working 12 hours a day, 7 days a week for nearly a year during the commissioning of new plant in 1991).

In the following years I continued to live normally and worked around the world in the water industry plus a spell of shift-work at Heathrow Airport. 

For the last 13 years I have worked in the water industry again on waste water sites as an engineer. I had annual blood tests and my thyroxine dose eventually stabilised at its current 150 and 175 micrograms alternate days.

Despite a “normal” blood test result for TSH, I still suffer some side effects of an underactive thyroid condition and have means of mitigating them as below:

1. Intolerance to cold – in the winter months especially, I wear extra clothing at work compared to other people (much of my work is outdoors). For example, a fleece and body warmer normally, even indoors, with a hat and gloves when needed.  When I go out to my allotment during the winter months I wear an insulated overall sometimes with another coat on top.  This has become less of a problem recently, probably helped by the purchase of some “real winter” clothing from North America (Carhartt winter overalls and trousers)

For night time wear all year I always wear a pair of pyjamas with a white cotton boiler suit, the bed has a 13 tog duvet and I live in a modern well insulated and air conditioned apartment. I only feel I can “reach normal temperature” in the summer. In fact, I seem to be much more energetic when it reaches 30c or so.

2. Extreme tiredness – this has become a more serious problem and has worsened. I am unable to get up much before 8 am. I never go on early flights or trains and I am only able to carry out my job by having arranged to start and finish later than other staff.

I need to have at least 8 hours uninterrupted sleep per night. This can be a problem if I am on call and am phoned during the night.

Fortunately the condition is appreciated by the Company Local Medical Advisor and so when a change to working patterns takes place I will be able to amend my hours. I have definitely become more of an “evening person” in the last six years, easily able to stay up beyond midnight but can’t do anything much before 10 am.

9/02/ 2012

I had been feeling unwell for nearly three years. I always felt exhausted, my legs ached a lot and appeared to be swollen up. My stomach was also swollen up and inflated most of the time and felt terribly uncomfortable. I had problems with my sleeping, bouts of depression, and felt extremely cold at times.

Other minor symptoms, such as losing lots of hair, dry skin, etc. also happened. After repeated visits to the GP, they finally found out what it was: I had a hypothyroid gland and was put on 50mcg levothyroxine.

Many symptoms instantly disappeared, such as the bouts of depression or swollen legs. Others haven't disappeared yet, like the sleeping problems.

Now there is an added problem, which is that I have developed a lactose allergy.
I think this is connected with the hypothyroidism. I have been drinking milk all my life and have never had a problem. Now if I do, I have discomfort in my stomach, loud rumbling noises, and huge amounts of wind.

Luckily, it was me who found out that all these symptoms were connected to drinking milk and not with irritable bowel syndrome, as was suggested. I have stopped drinking animal milk, changed to rice milk, and feel a lot better. Now I feel 60 or 70% of what I used to feel before this condition started. I am almost there!

Feb 2010