Member Advice on Hypothyroidism

Six months ago I was eventually diagnosed with a Hypothyroidism (in layman's terms Under Active Thyroid and through the rest of this piece I will use UAT ). I say eventually because I have had many of the symptoms for as long as I can remember but my GP's failed to put two and two together or just ignored them.

Your Thyroid

Your Thyroid is in your neck, under your voice box and Adams Apple and above your windpipe and works in collaboration with your pituitary gland. Your Thyroid together with the pituitary gland produces hormones that regulate how your cells and organs work within your body. The hormones your Thyroid produces are called Thyroxine (T4) and Triiodothyronine (T3), when working together these hormones control your metabolism and the way your body works including how quickly your body burns up energy, how quickly reactions in your body happens, how much you weigh and how much you sleep. The production of Thyroid hormones is controlled by another hormone called Thyroid Stimulating Hormone (TSH). This is made by your pituitary gland which is in your brain. So basically your body needs these three hormones to exist.

An UAT is when your Pituitary Gland produces too much TSH and your Thyroid doesn't produce enough Thyroxine, so your body and metabolism starts to slow down, this can also work the other way around and you can then have Hyperthyroidism (Over Active Thyroid).

Symptoms of Hypothyroidism (Under Active Thyroid)

Feeling tired and sleeping a lot. - Yes
Feeling the cold easily. - Yes
Dry and/or pale skin. - Yes
Coarse, thinning hair and brittle nails. - Yes
Sore muscles, slow movements and weakness including a tingling sensation in your legs and arms. - Yes
A hoarse or croaky voice. ?
A change in facial expression. ?
Depression. - No
Problems with memory and concentration. - Yes
Weight gain. Yes
Constipation. Yes
Fertility problems and increased risk of miscarriage. - Yes
Heavy, irregular or prolonged menstrual periods. - Yes
A slow heart rate and low blood pressure. - Yes
Possible Vision problems (mainly tunnel vision) - No
You may also have swelling of your thyroid gland which is called a goitre. - No

(The yes's, question marks and no's are my symptoms)

I don't want to worry anyone but very rarely if the condition goes untreated it can induce a Coma leading to death because your body just gives up.

Diagnosing a Thyroid problem

You can be born with Thyroid problems but nowadays babies are tested within 8 days of being born. The symptoms can come on from around the age of 8 onwards. Up until you are 8 your body produces enough hormones but as you get older it can sometimes slow down. Pregnancy can sometimes bring on the condition and it is sometimes hereditary. This condition is more common in women than it is for men. Diagnoses are done via a blood test which monitors the levels of TSM and Thyroid hormones in your blood.

Treatment

Once you get diagnosed the Doctors prescribe a thyroxin replacement medicine, called levothyroxine. This is available in tablet form in 25 microgram, 50 microgram and 100 microgram strengths. Once diagnosed Doctors tend to start you on a dose of 25 microgram and then after about 2 - 3 months another blood test is done to see how your levels are fairing before, if necessary, increasing your dose in 25 micrograms increments until your levels become normal. This is because they don't want to send your thyroid levels the other way and you end up with an Over Active Thyroid and too much Thyroxin can cause palpitations and chest pains and possible heart attack. Once the doctors have found your correct dose which can take some time, blood tests are then reduced to once a year. Once diagnosed, you will be on these tablets for the rest of your life but on the good side, you will qualify for a Medical Exemption card for NHS Prescription Charges, so you will never have to pay for a prescription again, this does not however cover your for free NHS dentist or optician appointments.

The tablets are tiny approx., 5mm x about 3mm and it is advised that they are taken first thing in the morning before breakfast, if you take them late in the day, it could cause sleep problems as basically you are speeding up the rate that your body works.

These tablets are not a drug; they are a replacement therapy for the hormone your body is not producing so it is very unlikely that you could have any side effects unless you are prescribed a too bigger dosage.

My experience

(Warning - this contains information about my monthly cycle and I don't mean me riding a bike!)

You may be wondering why I am writing this when I was only diagnosed 6 months ago. Well that is because I first started getting symptoms at a very young age and I am now 44. My first memories were very tingly legs at about the age of 10; this was diagnosed as growing pains! Next came my monthly periods and they were extremely heavy, so heavy the blood used to run down my legs and for a teenager this is very embarrassing and that was diagnosed as hormonal, how right they were, but they never done anything about it until I was 15, when the Doctor decided I should go on the pill to reduce the flow. During my schooling, I started to lose concentration and used to be off with the fairies most of the time; I was always tired no matter how long I slept for and could never get up in the mornings often ending up being late for school. I failed all of my exams, my school reports were very bad and teachers (please remember that this was during the late 70's early 80's) used to call me thick, it's no wonder I hated school. My Mum did do her best and took me to the GP on a number of occasions but she was told that she was a paranoid mother who wouldn't accept that her daughter was thick. When it came to leaving school the careers advisor told me I was too thick to go to college and too thick to get a decent job. I do hope times have changed now.

I got myself a job working in a jewellery shop and was extremely happy. I continued to get tingling legs but due to me being on the pill, my periods were no longer an issue although I would have days when I would be confused and have no concentration at all.

When I moved from London to Derbyshire, I found myself a new GP. Discussed my tingling legs and tiredness and confusion with her and her reply was that I had bad circulation causing the tingling and I should go to bed earlier and then I wouldn't be so tired and confused. In my early 20's I started to put weight on, going from a size 8 to a size 16 in a matter of months, around the age of 25 I was diagnosed with quite high cholesterol due to the excessive weight, the doctor gave me a diet sheet and told me to join a gym. During this time I met my now Hubby, his late father was a retired nurse and used to sit next to me checking my pulse, (in fact he used to do that with everyone he met!) he always used to say to me, you should get yourself checked out, your pulse is non existent and you look so pale but my GP just said I had a low blood pressure. So nearly 20 years ago I had 6 of the symptoms associated with Thyroid problems and yet still no Thyroid test had ever been done.

I continued to put up and shut up about my symptoms and then about 10 years ago, I started passing out for no apparent reason, this obviously frightened my family and friends, as one second I would be standing talking to them and the next second I would be a crumpled heap on the floor, I visited my GP and she referred me onto the hospital, all they could tell me was that my blood pressure was dropping so low and it was unable to keep my body functioning correctly, go home, relax, it would sort itself out, once again no blood test was taken to ascertain if there was a problem that could be causing this.

We then decided we wanted to start a family, so I stopped taking the pill and waited for this happy event to happen, it did and I miscarried, it happened again and I miscarried again, now by this time I had known my GP wasn't exactly the caring type and certainly lacked bedside manner , once before, when I had rogue cells in my cervix, she told me to come back in 6 months for another test, when I asked what would happen if the next test was positive, she just blurted out, no problem we will treat you for cancer! This time she told be to just get over the spontaneous abortions and just keep trying for a baby, for me calling them spontaneous abortions was more heartbreaking than the miscarriages themselves. Not long after that, she packed up shop and moved away so I was given a new GP.

Not long after I was given my new GP I discovered I was pregnant, they immediately sent me to the hospital when I was given regular check ups and scans until I got over the 3 months period. This time I went onto have my beautiful daughter Holly.

That was nearly 5 years ago and during these 5 years I could feel my body deteriorating, I was always tired, I had no energy and my periods turned into something that resembled the Texas Chain Saw Massacre. I was using around 36 tampons in 7 days (normal use is apparently around the 12 mark) and would have to wear Tena incontinence pants to catch the overflow, I couldn't go far from the house during this time unless I had checked out where the nearest toilet was and carried a suitcase full of tampons and Tena pants, so this was starting to affect my life. I also turned into a bad mother, I was so tired that if my daughter woke up during the night, I was so heavily asleep that I never heard her crying and my Hubby would have to get up to her unless he literally kicked me out of bed to wake me up.

When Holly started Pre-school I would make the effort to clean the house and tidy the garden but I had normally burnt myself out by lunchtime, some days my energy levels were so low I would have to go up the stairs on all fours, and by this time I had entered my 40's all I could think was how can people say life begins at 40 if you are always this knackered. I had even started to resent my daughter, I thought she was wearing me out too much, I became even paler than before, my skin had no colour whatsoever and I noticed the skin on my lower legs had started to resemble a snakes skin, I was always so cold even in the middle of summer. I had so many aches and pains it was unbelievable. I joined a gym but during the 18 month period I only managed to shift 1 stone so I gave up on it because it was wearing me out too much.

During this time I had seen my GP a couple of times before we went on holiday and he would prescribe me tablets to delay my periods whilst we was on holiday so I could enjoy myself but he never suggested any tests to see why my periods were so heavy and as to why I had no energy, all he said was you are a mother to a young child, what to you expect.

Then earlier this year it happened. My periods were so heavy that a tampon was lasting me about 1/4 of an hour, and one day I got out of the shower and my now 4 year old daughter screamed hysterically Mummy you are bleeding and blood was pouring down my leg, it took me ages to calm her down and I immediately got on the phone and asked for an appointment with the family planning Doctor.

This GP was a woman and fantastic, I told her everything, she immediately put me on iron tablets as she said I was anaemic due to the blood I was losing, prescribed me something to reduce my flow, booked me in for a scan to see if anything was happening in my female bits and arranged some blood tests. The scan came up with nothing but the blood test showed I had protein in my blood and I needed to see my normal GP, so it was back to see a man again. He asked me a few questions then said you must have an infection somewhere due to the protein in my blood, he arranged more blood tests.

By this time I now had the internet so I came home and done an internet search of protein in blood and started looking through the results and that was when I came upon a page about Thyroid problems. I started to read it and looked at the symptoms; I managed to check off 8 of the 14 symptoms. I rung the Doctors back and asked if I was having a Thyroid test done and she told me no, so I requested one, but the GP would have to authorise it so he would ring me back. When he rung me back he told me I didn't have a Thyroid problem but no harm would be done if they ruled it out so he allowed me to have the test!

So another blood test was taken on a Monday, the nurse told me it would be a week before the results came through. Tuesday morning I had a call from the GP, could I get in to see them urgently but they wouldn't tell me what the problem was. Off I shot and walked in too see another GP within the practice and I couldn't believe what he said to me "Ah hello Mrs M, you shouldn't be here, you should be in hospital in a coma!" He then went onto explain my Thyroid levels were so low he had no idea how my body was still functioning. He then went on to ask me why I didn't seem surprised or shocked at the this news, I told him I had had so many symptoms for so long, that I was just relieved that my problem would be sorted, he told me that my body had become so adjusted to have low Thyroid levels and it had just carried on regardless.

He immediately prescribed me my first dose of Thyroxin but decided it was no good starting me on the minimum dose of 25 micrograms so went for 50 micrograms instead, although he still couldn't get over how I was actually functioning. He booked me in for another blood test to be done after 3 months on that dose. The next blood test results came back and they needed to up my dose to 75 micrograms. My next blood test is due at the end of September.

So how do I feel now I am being treated?

The first thing I noticed on the first two days of taking the tablets and again the first two days on increasing my dose was that I had a stitch due to my metabolism speeding up, I noticed my nails had started to grow stronger and my hair was no longer lank even after washing butother than that I noticed nothing at all with taking the first dose, I was still cold but I did have a bit more energy but I would be burnt out by about 3 o'clock. When they increased the dose to 75 micrograms after the first month I noticed my period flow had reduced dramatically, I can now go out whenever I want without having to carry a suitcase full of tampons and Tena pants, I have now got some colour to my skin and the skin on my legs is no longer scaly. My memory has come back and I am not as confused as I used to be and I can concentrate on whatever I am doing, I have energy but I am still burnt out by about 7 pm. I wake up in the mornings and I am not tired. I no longer do stupid things like putting the tea bags in the fridge and the milk in the dishwasher, at one point I had thought that maybe I had got Alzheimer's starting. But my legs still tingle, and I still fill the cold but I can put up with that.

Since this has been diagnosed, a few things have come to light within my family. My paternal Grandmother was always a big woman, whilst she was in hospital during the very early 70's before she died of cancer, the hospital kept her on an orange diet (she could only eat oranges every other day and nothing else, poor woman) in a bid to get her to lose weight, this never actually worked, did she have an UAT? One of her sisters, who is still alive today, has been diagnosed with UAT, two of my Dad's cousins, (children of my Grandmothers sisters) have been diagnosed with this and all this only came to light once I was diagnosed. All 4 of us all feel that we have had the symptoms for most of our lives and have all had difficulty getting a diagnosis.

All of our symptoms have been different, although we have all got tingly legs. One of them loses her hair and she knows that the dose needs to be increased, one suffers badly with depression. We all have our good days and we all have our bad days.

I have been lucky, I have never suffered with depression but I have had times when things have got on top of me and I can see no way out but I have just persevered. I have read on a few websites that family members can not understand what is happening to you and sometimes marriages can end up in divorce. My Husband and I have had our fair share of arguments over this but the main bug bear with him is my always feeling cold when he is not. He works outside and is used to the cold so I give in and put an extra jumper on and wrap myself up in a blanket to warm myself through. He works and is a street light engineer, so he has an excuse for being tired, so why am I always tired? Even when I did work, I just worked in an office and sat on my bum all day, how can that make you tired? He now knows why!

One thing is for sure, the minute my daughter shows any signs whatsoever I will be insisting on a blood test and will not leave the Doctors Surgery until one has been taken, I am not letting her suffer the way I have suffered through the years. I do sometimes wonder, would my life have been any different had I been diagnosed earlier, I would have probably had more children but then would I have gone on to have a career instead of a job all my life, would I have met my Hubby but I am happy with the life I have got now so all that doesn't matter!

I don't know if my body will ever be normal as I have no idea what a normal body should be like but then again does anybody, after all we are all different and our bodies all behave differently!

So this piece is under Member Advice

Well I can't give you any advice I am not a GP although with my self diagnoses I perhaps should be! If you know you have or a member of your family have a number of the symptoms, see your GP and DAMN WELL insist on having a blood test. My major problem throughout my life has been no GP actually listening to me and putting two and two together, I have always been hitting my head against a brick wall. I have always had a nagging feeling that something was not quite right with my body and it is my body and I should know best!

GP's seem against doing the blood test, could it be that due to free prescriptions they feel they could be losing out, I have no idea!

If you have been diagnosed then that is the hard bit over and done with, it is all plain sailing from now on it is just now a matter of getting the dose right which could take some time but you will start to feel the benefits. This is not an illness it is a medical condition that is controlled not by drugs but by a hormone replacement and up to now I haven't grown a beard!

If you need further information it can be found at

British Thyroid Foundation
01423 709707
www.btf-thyroid.org

British Thyroid Association
www.british-thyroid-association.org

Or the BUPA Website gives some good information at http://hcd2.bupa.co.uk/fact_sheets/html/​underactive_thyroid.html

Please ignore the specific criteria, they have nothing to do with Thyroid problems!

Many thanks for reading this and if it has helped somebody else get diagnosed with this problem so they can start enjoying life again then my work will not have been in vain. Anna