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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

Just before I was diagnosed with low thyroid, I was working part-time (10.00 am – 2.00 pm).  For a long time, I had been feeling unnaturally tired; I knew something was wrong other than normal tiredness. Sometimes, I would pick my grandchildren up from school and take them to their house until their parents arrived home. But all I had the energy to do was get them a snack and then just sit.
Usually, I would be finding odd jobs to do, help with the homework etc.

Another time, I was about to post a letter when my legs just gave out beneath me. Fortunately, there was a bench close by so I sat down for a few minutes until I felt able to post my letter.

I was seeing my doctor regularly because I was on blood pressure tablets and statins and I happened to mention my extreme tiredness.  My doctor decided to test my thyroid and the results came back as underactive.  I was prescribed 75mcg of Levothyroxine but, even when my tests came back as well within the accepted limits, I still felt tired – like a hazy, sticky fog was restricting my thoughts and movements and I always felt cold.

Latterly, I have been feeling much better and I put this down, in part, to my use of coconut oil as a spread on my bread. My most recent set of bloods has been very good, plus I don’t feel so tired and hazy now. I buy the coconut oil from the internet as most shops don’t seem to stock it. It’s important to buy virgin coconut oil and the benefits are myriad - including helping my thyroid.

UPDATE:

For two years prior to being diagnosed with a low thyroid I was experiencing diarrhoea – it became really unpleasant and I always had to know where a toilet was located!   My doctor tested my stools and bloods but these came back as normal. However, once I had begun my thyroid medication I suddenly realised that my stools were gradually becoming normal.  I can only assume that the previous two years of discomfort in this respect was down to my low thyroid.

Another observation I would like to make relates to the coconut oil I have been taking, which I mentioned in my initial statement.   As I had no understanding of the thyroid’s work I did some research, as did my daughter-in-law.   My daughter-in-law found that virgin organic coconut oil used every day helps a myriad of conditions, amongst which is the thyroid; it contains the same substance found in a mother’s milk (if you google something like “.. what are the benefits of coconut oil ..” you will be taken to appropriate pages).  Anyway, I love coconut and didn’t really think it would do much for my thyroid; how wrong can you be!    Each morning I would spread a normal amount of coconut oil onto my toast – sometimes I had some before bed, but not as a normal routine.  Anyway, I visit my doctor at six monthly intervals for my batch prescriptions with routine blood tests once a year relating to the various medications (blood pressure, water, statins and thyroid).   At the time I was using the coconut oil my blood results came back with elevated thyroid levels.   I said nothing of my suspicions to my doctor at that time but thought to myself that these raised levels could have been caused by the coconut oil and so, because I have no way of testing my bloods regularly, I decided to stop taking it until after the results of my next blood test.   I visited my doctor a couple of weeks ago for my “batch” prescription and because of these elevated thyroid levels my doctor decided to give me another blood test for my thyroid (I usually have them once a year).   When the blood results came through my thyroid had levelled out again (I had ceased taking the coconut oil for the previous six months – only having it now and again).

June 2011

Angela's Story

I was diagnosed with Hypothyroidism about four years ago by my GP, after initially being diagnosed with CFS/ME.   I started to take Levothyroxine and gradually this was increased, but I didn’t feel well.  I consulted Dr Skinner who was great and helped my GP.  We tried increasing the Levothyroxine and when that didn’t really help, combined it with Tertroxin (T3). The two hormones helped, but I never felt really well, as I tended to have periods of feeling ‘edgy’ and then times where I felt mentally really slowed down!  I had many of the usual hypothyroid symptoms such as swollen tongue, brain fog, energy crashes, weakness, bleeding gums, weight gain, constipation, food intolerances, higher blood pressure, low temperature, slow pulse, weight gain (loads! L)....the list goes on!!  One symptom that persisted, which Dr Skinner couldn’t explain, was the thigh and groin pain that gnawed away.

Anyway, after about two years of messing around with this combination of hormones, I got fed up with the fact that I still felt unwell!  I was about 4 stone overweight and still plagued by hypothyroid symptoms and struggling to do my job, and had no energy to enjoy life. By then I was also taking tablets for water retention, as my ankles and legs kept swelling up.  So back to the GP, who found that my liver blood test results were abnormal and sent me for a scan.  This fortunately showed nothing, which was good, but my GP was puzzled and unsure what to do.  I decided to see Dr Peatfield, who wondered if my liver was not coping with the synthetic hormones and suggested I moved across to Armour Thyroid.  This I did, and noticed an immediate improvement –no more edginess or diving to the depths of collapse!  Wonderful.  However, even though I ended up taking a far too high dose of Armour, I never really gained my energy level back, but life was bearable.  Most symptoms reduced and some went, but not the thigh and leg weakness, thin hair, weight gain and I still had restricted levels of energy.

A year ago I broke my leg.  I don’t know how, and I have no memory of doing anything to it.  (I am a wimp over pain, so it wasn’t because I am stoic!).  I was referred to an orthopaedic consultant to check me out.  The consultant found that I was extremely low in Vitamin D. He explained that I wasn’t absorbing any calcium because of this, despite my diet rich in calcium.  If not treated, I would develop soft bones called Osteomalcia.   He gave me two mega doses of vitamin D3, 100,000iu a month apart.  The recommended dose per day is 400iu, according to present recommendations in the UK (although this is changing).  He also prescribed  Adcal ( a calcium and vitamin D3 tablet), which meant I took 800iu of vitamin D daily. I take 5000iu per day of vitmain D3 at the moment until my next blood test..I take this several hours away from my thyroid med, as it can interfere with its absorption otherwise.  The effect on me was immediate.  I was stunned.  I slept deep and restful nights and woke up feeling rested (something I hadn’t done for years!).  The pain in my thighs went.  My energy levels shot up and I felt vibrant and alive.  My strength is slowly returning and finally my hair, which was still thin, is finally growing and thickening. 

I do have a skin condition called Vitiligo (an autoimmune condition), which means that I don’t have pigment, so I don’t go brown. It is extensive, so I look Lilly white and cannot tolerate even spring sun in Britain without burning. As a result, I have avoided the sun for a number of years for fear of skin cancer. In the summer I would wear full sun screen block and long sleeves to cover up when I had to go out in it.  I love the sun.  Sadly the sun doesn’t love me!

Now I am able to exercise –walking and yoga to try to increase my strength and bring my poor body back into shape.  The extra weight is very slowly dropping –at a dribble- but I have now lost 10lbs after 6months.  I feel so great and everyone who knows me has been amazed and keeps commenting on how different I am.  I continue to be monitored by the consultant in orthopaedics.  I feel so lucky, as without his intervention, it could have been such a different outcome.  I am grateful too to Dr Skinner and Dr Peatfield, who also helped with putting the jigsaw pieces together and solving my medical problems and helping me to get better. 

My message to everyone is, please get your vitamin D levels checked.It’s a simple blood test that your GP can do.  It’s so easy to blame everything on your thyroid. My understanding is that low vitamin D affects the uptake of the thyroid hormones in your tissues and your absorption of calcium.  It causes so many symptoms akin to hypothyroidism such as weakness, low energy, bleeding gums, loss of muscle, thigh pain and aches that it is easy to miss.  Low vitamin D is easy to remedy with tablets too.

November 2010

Christine's Story

I was tested and diagnosed in April 2005, aged 32, just after the birth of my first child. My TSH level was 166 and my T4 level was 0 so I was put on levothyroxine, gradually reaching 100mg, which I have always taken religiously in the morning on an empty stomach (though sometimes also took iron tablets and supplements, at the same time not knowing this was to be avoided (my GP didn’t know it was to be avoided!) either

I kept going back to my GP complaining about typical hypothyroidism symptoms. I saw a gynaecologist who asked if I wanted more children. I said yes and he said "Go and have another one and all your symptoms will go away!” I did the synacthen test, went for an MRI. I was due for an EED but didn't attend because I fell pregnant with my second child.

During the pregnancy, the mid-wife didn't always test my TSH. Sometimes she forgot. I found that out later and was petrified that my child would be born with the condition.

I kept complaining to my GP. I changed GP within the practise. It just didn't feel right. The previous GP put me on the pill but I felt terrible with it so stopped it.

I saw an endocrinologist who read my TSH results and reckoned I was just fine. No other checks were done. I saw another specialist who was only keen to talk to me about his holidays in France. I have been seeing other gynaecologists since, because I have very heavy periods. I was about to ask my GP for some anti-depressants as I am fed up with who I have become. I have been seeing a dietician who reckoned I have IBS, explaining stomach cramps and constipation. I had myself checked for coeliac disease and it's negative..

I have seen a private gastro-enterologist who declared I was simply constipated and that it is a common condition “at my age”! I am following the IBS diet and am careful to avoid the foods that are unhelpful to the hypothyroidism condition.

I also went  to see an osteopath, who did a test on the foods I should and shouldn't have to help my system. It was nice, and pleasant, but it didn't solve my problem.

I have been very low on iron several times over the past 2 years so my GP put me on a 6 month course of ferrous sulphate but she NEVER mentioned to take it 4 hours apart from thyroxine. When I mentioned it to her, she said that it's not something she'd heard about. I asked if I should take kelp and she said that it can't do me any harm, “Besides, that's how people were treated in the olden days”. From more reading on the internet, I now understand that supplementing with kelp is not such a good idea.

I have seen another endocrinologist and asked to be on trial for T3 supplement (my free T3 was tested for the first time ever in December 2010) but he denied me the drug as I am 0.1 - “within range”!!!

I am now on 125mg daily and I am waiting to see my next blood test results to see if it has had a positive impact on my T3 levels, though I am concerned about taking too much T4 with the heart and bone risks it involves.

Oh, incidentally, I was tested in December 2010 (why so late) for Hashimoto’s disease, and it was positive. I suspect it has an impact on how I feel and    I am trying to keep the TSH low. I gather from my readings that if my body is allowed to release TSH, my auto-immune condition will make me feel more hypothyroid since my cells will attack the thyroid. I am trying to discuss this with my GP but I am not getting anywhere. I am due to resume work next year and I need to be fit and able, every day.

How come my GP has NEVER mentioned that there were websites that help other people out there. My point is, if I had ended up with diabetes, I would have had leaflets and information. With this, I was told, "It's okay, it's a life-long condition, but as soon as you take your pill daily, you will be like a normal person again. This will replace what you lacked". And that was that!

For SIX LONG YEARS I have wondered what the matter is with me, suffering from back ache, long super heavy periods, slow speech, slurring, weak muscles, slow movement, apathy, lethargy, fatigue, lack of drive, mood swings, low mood, stomach cramps, constipation. I am still recognising the hypo symptoms such as puffed face, droopy eyelids and hair loss. I am also very cold and was found with a low progesterone count (I could tell I had a hormonal imbalance), irritability, feet numbness, joint pains, hoarse voice, coarse hair ...

I was bounced from specialist to specialist, all the while making me feel that I was a hypochondriac, when all along, it all stemmed from the thyroid.

Why didn't I get help or information? I was diagnosed one Saturday morning by a chap working at the lab telling me I had a life long condition but that I would be fine. I fell on the floor! Over the phone, just like that, and no additional information. I looked on the internet but I didn't find quite as much info as I do now.

The way I was treated and am still treated is wrong. I keep being pushed aside and made to feel I'm a weeping girl.

I forgot to mention that I went to see my GP in about 2006 with the book, "What your doctor may NOT tell you about hypothyroidism"  he scorned at it and told me it was a lot of hocus pocus and that I was just fine on levothyroxine. T3 was just some "out there" American doctor's idea...

I believed my doctor and I trusted my doctor. And here I am 4 years later and still in the same boat.

I am not okay on 100mg Levothyroxine but I am worried 125mg may be too much. I believe that I need T3 but it looks as though I will be denied this, because the medical profession doesn't recognise that it helps. Is it just cost related r lack of knowledge on the medical board?

I hope it will be useful to you, to add to your list of people who have a grievance with GPs, who are uninformed and possibly uninterested. As friend put it, “Because you don't come out with spots, people don't really recognise that you have an illness".

Thank you, Thyroid UK, for being there and putting such good information on a website.

September 2010

Madeleine's Story

I was diagnosed with hypothyroidism about 4 years ago.  I had gradually gone downhill, putting it down to chronic fatigue syndrome. I was put on 100mcg of levothyroxine which has now been increased to 125mcg.

I still do not feel any better, in fact I feel worse. I have tried explaining this to my GP but may as well be talking to a brick wall.  I am constantly tired, have cold hands, a swollen neck and a permanent sore throat.  I am always constipated and bloated, and most of the time I do not know whether I am coming or going because of the brain fog.

My doctor refuses to prescribe me anything else other than levothyroxine, thus sentencing me to a pretty poor quality of life.  I am at my wits end.

12/05/2011

Heather's Story

Do you know about the thyroid and salicylates? This is very important for all underactive thyroid sufferers but particularly for anyone who is sensitive to aspirin.

I am both unusual and lucky in that my hypothyroidism symptoms were the exact opposite of those normally experienced.  I began to lose weight, had digestive problems, couldn't sleep and became totally hyperactive - - I ran between household chores!  I have a wonderful nutritionist who did a kinesiology test and told me to go straight to my GP as she thought I had an underactive thyroid. Both my GP and I thought she had this wrong - shaking hands and weight loss means 'overactive', but a blood test proved her entirely right.  I had a TSH of 21.

Thyroxine swiftly helped and I felt fitter than I had for years but every now and then there was a blip - I felt shaky and was wide awake for hours at night although luckily never felt tired the next day.  The consultant could give me no reason for this as my TSH always came up as normal, so I contacted the nutritionist.  In looking at my recent blood test she wrote, "Your free T4 seems quite low and can indicate a few things such as low iodine. Iodine can be inhibited by compounds such as fluoride, chlorine and bromine but can also indicate an intolerance to foods containing salicylates (aspirin family)." This immediately rang bells as aspirin makes me feel quite ill - I get a tight chest and the 'air hunger' which other underactive sufferers report. She sent a rather alarming diet sheet - naturally occurring aspirin crops up in so many foods and sadly so many 'healthy' foods. The diet sheet told me that avoiding salicylates could help sufferers of nettle rash (me), asthma, ulcerative colitis, hyperactivity (me) and hypothyroidism (me) so I thought it was definitely worth a try.

The change was dramatic - I slept like a baby and felt calm and in control. The down side is that the diet is very hard to keep to and that salicylates accumulate in your body so you think you have got away with eating lots only to reap the rewards several days later. Wine and soft fruit are the hardest to resist. But at least I now know what causes my problems and know that it is within my power to control.

It may not be an answer for everyone but it is certainly worth a try if you are not consistently well. There are good internet sites advising on salicylates in food but say goodbye to mint tooth paste and don't get caught out by corn plasters as I did - they are loaded with salicylate which you can absorb through your skin!

June 2010

Gillian's Story

For five years I knew I wasn't well. I couldn't concentrate, I was bloated around the middle (regardless of what I ate) had weight gain and I was always cold when everyone else wasn't.  I was so tired even after a good night of sleep, I woke up exhausted and two hours later felt like I needed to go back to bed.

I spent over £4000 of money that I didn't have going to nutritionists and private doctors because my own doctors kept wasting my time and telling me I had IBS. I had five thyroid tests come back in normal range. Yet, if I read the symptoms of thyroid disease I had most if not all of them.  I went to dieticians, homeopaths, acupuncture . . . the list goes on. They all initially thought it was my thyroid but when the tests came back normal they also said I had IBS. I was prescribed anti-depressants but the only thing that was making me feel depressed was that no one would believe how ill I felt.  I think they thought I was overreacting because I watched my diet constantly and wasn't overweight.
 
Five years on I was watching a TV programme where a doctor said if he had a patient showing consistent symptoms of an underactive thyroid, even with a normal test, he would put them on a six week trial.

I went to my doctor and had to threaten to try it myself before they listened. The outcome was that one little tablet a day changed my life within a week.  25mg of thyroxine and I got my energy back. I could concentrate and generally felt better within myself.  Five years of frustration and all I needed was for someone to believe me.

I'm not totally free of symptoms but I can get back to normal life because I have the energy to participate. I do still get tired but nothing like I experienced before.  My weight has evened out and although I am heavier than I was I don't have to be on a constant strict diet. I still feel cold before anyone else but I don't mind. I never want to feel as bad as I did before taking thyroxine. It still took a lot of convincing my doctor how much better I feel but it was worth the fight, and a year down the line I feel so much better.

January 2010

Beryl's Story

My name is Beryl and I live in the Midlands.  I am aged 62 and about 3 years ago I visited my doctor as my thyroid gland was larger in my neck and I felt unwell.  I felt really tired all the time, I had to sleep 12 hours a day just to drag myself through the over 12.  My hair and skin were dry and I was always constipated.  I felt I was shrinking physically and mentally.  My hair became thin and I saw more and more of it lying on my pillow each morning.  One side of my face would swell up and another day the other side of my face would swell.

My thyroid blood test was normal.  My doctor said I would need another blood test in 6 months as she did not know why my face kept swelling.  She referred me to the hospital.  The doctor at Northampton General listened to my woes and said straight away, whilst looking at my swollen face “that’s thyroid”.

By this time the 6 months were up (6 months of hell) and so I had another blood test.  This showed I was just out of normal range and my GP put me on 25 mcg Levothyroxine, which was heaven sent.  After a few months I began to feel bad again, but she would not raise my dosage.  I had to wait for the 6 month blood tests again and I suffered much.  My blood tests showed I had dropped out of normal range and she increased my dosage to 50mcg a day and the same routine happened again.  I needed my dosage rising again after a while, and she would not raise it.  She looked angry with me and I knew I was wasting my time.  I was looking after my disagreeable partner, my lovely son and going to elderly parents almost daily and working part time.  I just felt as though I was slowly dying. 

Then I found Thyroid UK on the internet and it was heaven sent.  Armed with Thyroid UK literature I saw another doctor at the surgery and he raised my dosage.  I am now on 100 mcg a day but each week I do need 1 more tablet which I break into 4 pieces.  This 100mcg extra per week keeps me on an even level.  I have never consulted my regular doctor again as I felt she allowed me to suffer needlessly.  I forgive her for this as she is just rigid in her thinking.  I know what my own body needs and I regulate my dosage myself and I am getting on well with this dosage.

My asthma is better when my thyroid levels are ok.  If anyone goes out to Spain and they take too few tablets with them, they can be bought over the counter.  To keep my hair growing well I use Wella 3.5 serum for avoidable hair loss.  It can be bought at hairdressers that stock Wella products or from the internet.  I use this 3 times a week on a regular basis; it works for me very well.  I was told I have thyroid antibodies as well.

January 2009

I suffered a very bad case of flu in January 1981 and had trouble regaining my normal state of health after that. Because of ongoing dizzy spells and blocked ears I went to an ear nose and throat doctor (in the US).  He discovered my enlarged thyroid and a large benign tumor which was removed. 

After this, I suffered terribly from fatigue and further tests resulted in a diagnosis of Hashimoto's.  I was put on synthetic thyroid at a dose to bring my levels up to normal. I have continued to take thyroid medication with occasional tests to make sure the levels were correct.

In the late 1990s I developed symptoms of what I thought was underactive thyroid but the tests kept coming back normal - weight gain, hair loss, intolerance to cold, depression, headaches, constipation, etc.  Then it went on to muscle pain and stiffness. At first it was diagnosed as chronic fatigue, and then fibromyalgia. 

It got so bad that I could hardly walk down stairs because my muscles were so stiff and sore.  I was put on a low dose of SSRI’s ('selective serotonin reuptake inhibitor' – antidepressants) which seemed to help, at least enough that I could slowly start to get back into exercise.

I've also been under the care of a medical nutritionist who has helped me get my health back. I have been off the SSRI’s, which caused more problems than it helped, since July 2008.

Lately the pain, fatigue, headaches, hair-loss, depression, etc. is coming back.  Today my nutritionist asked if my thyroid tests ever include the antibodies.  The answer is no, and he suspects that although the levels of T3, T4 and TSH come back normal, the antibodies are probably high thus causing these symptoms.  He's sending me for a complete thyroid workup to see if this is at the root of the problem.