Molly Holland – My Thyroid Story
I was 14 when I was diagnosed with a thyroid disorder?
I was born in 1958
I developed a large lump under my chin on the left side which was eventually diagnosed as a swollen ectopic thyroid gland, but when I had my first thyroidectomy operation at age 25 (1983) I was told it consisted of cystic thyroid tissue and an undersized gland. Started on thyroxine daily. The tissue grew back, so second operation in 1993.
When first diagnosed, although the medical team asked my parents and I about childhood symptoms before the lump (goitre) and said that there was a link with hypothyroidism during childhood, they said I was okay now with blood test results and was not affected cognitively- no other tests were carried out.
Mum had severe flu during pregnancy in 1957. I seemed okay as young child but a hairdresser commented on my very dry hair when I was preschool and suggested seeing a doctor. Mum changed shampoo and hairdresser. I became very short-sighted rapidly between the age of 7 and 8.
I was quite a lethargic, clumsy child unlike my older brother and sister. Had early puberty with other symptoms linked to hypothyroidism (low thyroxine = higher oestrogen = fraught PMT). I knew I was not strong but it seems that I do not strengthen normally.
I had a fall ice skating in Nov 1977, and the weight of a speed skater falling on me caused subluxation of my pelvis and as henceforth I was in pain I blamed the accident, especially after a rheumatologist told me that she thought I had had fibromyalgia, I saw her in 2004. I later discovered that there is an overlap with hypermobility and of hypermobility with hypothyroidism.
At the time of the accident I saw a number of baffled doctors then went to a baffled osteopath as he said my back was out but every time he fixed it, it went out again whereas usually once treated it stayed put. I gave up on the NHS doctors after:
I was not sure but Mum was very against doing anything. An operation was vetoed until ten years later, I was buying jumpers in M & S, and a stranger said 'go and have it done' showing me her scar. I had an ultrasound scan which involved holding a bowl of water above my neck and getting soaked. The heel prick test on babies was introduced in 1969 when I was aged 11 years.
Apart from the two thyroid operations, I had cataracts at 43, macular degeneration at 63, a vein op which didn't help leg pain, a hernia, a bladder prolapse, a bowel prolapse and pregnancy and birth complications.
With the first baby I had divarication of the rectus, which means my stomach bulges and I had malpresentation with my second son. He needed to be delivered by caesarean section, but the procedure was delayed, and he has severe cerebral palsy. Not because of my condition but because the correct procedure was not followed. Now I can't help wondering if the doctors might have been more diligent if I had been diagnosed. Sadly the college GP wasn't alone in dismissing my pain, another doctor said it was possibly the hard winter (of 1979) and when I asked another I was told he could not say how I would be affected as he could find nothing wrong.
I take 100mg levothyroxine but I have gone up and down lately. I realised that the taking of omeprazole especially too close had been linked to being too low and had a lecture about being careful to take meds away from other meds and food.
I am on diabetes meds (I think this another 'present' from my thyroid problems), an antidepressant for muscle pain and some supplements.
I also have chiropractic and massage treatments.
Do you have any comments about your medication or other treatment?
Being rare (one in 300,000) I have had to research and investigate my thyroid condition myself then present information to GP and then went privately for endocrinologist opinion.
How satisfied are you with the care you have had for your condition.
Dissatisfied
Please explain the reason for your satisfaction rating above
I slipped through the net as I had no proper investigation into the effect of hypothyroidism on me. It was a mistake to see me with my mother as she was always anti doing something to intervene and very operation phobic, sometimes with reason. She was very upset when I had my first thyroid operation in 1983 as 'there is a terrible illness in blood from abroad' (AIDS).
If you have been dissatisfied with your care please outline what steps you have taken to address the issues you are dissatisfied with
It took me about forty years to discover that I was right and the college GP wrong. I did ask about my pain throughout, but I did not properly link it until I read a research paper about the effect of low thyroxine on muscle development in the womb. Until then I had assumed that the link was that being underactive as a child I had not exercised enough so any activity over a certain point made me ache and subluxations followed.
When you find that you are in pain and there is a cause (more slow twitch and more fat cells and not strengthening properly) there is frustration when you realise that with a bit more curiosity and patience you would never have been undiagnosed with catastrophic consequences for your loved ones.
Do you see a GP or specialist? How frequently? How well do you feel you can communicate with them?
I see an endocrinologist privately - been to see him twice, recently and eighteen months ago. My GP does now realise that I do have 'endocrine myopathy' (as well as/instead of Fibromyalgia) hypermobility and arthritis.
How have you felt since diagnosis and how do you feel now?
More confident about claiming that I am disabled rather than inadequate. I feel frustrated and terribly sad about the consequences for my family.
Has your thyroid condition changed your life? In what ways?
I realise that I could have been miscarried or stillborn or lacking intellectually. My mother collapsed in 2005 with pneumonia and only then was it discovered that the illness which she had during pregnancy had caused the loss of her left lung. Vaccines for 'flu were introduced in time for the pandemics of the 1960s.
All through my childhood, I tried to keep up with my classmates physically but couldn't. While I didn't know that I didn't feel 'right' and I did not know that I was different, I accepted a lot of negativity when I was actually doing well within my own perimeters.
If there is one message you would like to share with other people who have just been diagnosed with a thyroid disorder what would that be?
Mine is an extreme case but, don't listen to people who have not experienced a condition that does not just affect one part of you but affects you all over. Pace yourself and remember to make time for oasis days.
If you had a message for medical professionals treating people with thyroid disease what would that be?
I was 14 when I was diagnosed with a thyroid disorder?
I was born in 1958
I developed a large lump under my chin on the left side which was eventually diagnosed as a swollen ectopic thyroid gland, but when I had my first thyroidectomy operation at age 25 (1983) I was told it consisted of cystic thyroid tissue and an undersized gland. Started on thyroxine daily. The tissue grew back, so second operation in 1993.
When first diagnosed, although the medical team asked my parents and I about childhood symptoms before the lump (goitre) and said that there was a link with hypothyroidism during childhood, they said I was okay now with blood test results and was not affected cognitively- no other tests were carried out.
Mum had severe flu during pregnancy in 1957. I seemed okay as young child but a hairdresser commented on my very dry hair when I was preschool and suggested seeing a doctor. Mum changed shampoo and hairdresser. I became very short-sighted rapidly between the age of 7 and 8.
I was quite a lethargic, clumsy child unlike my older brother and sister. Had early puberty with other symptoms linked to hypothyroidism (low thyroxine = higher oestrogen = fraught PMT). I knew I was not strong but it seems that I do not strengthen normally.
I had a fall ice skating in Nov 1977, and the weight of a speed skater falling on me caused subluxation of my pelvis and as henceforth I was in pain I blamed the accident, especially after a rheumatologist told me that she thought I had had fibromyalgia, I saw her in 2004. I later discovered that there is an overlap with hypermobility and of hypermobility with hypothyroidism.
At the time of the accident I saw a number of baffled doctors then went to a baffled osteopath as he said my back was out but every time he fixed it, it went out again whereas usually once treated it stayed put. I gave up on the NHS doctors after:
- the college GP got angry with me for asking if my muscle pain was linked to my thyroid as 'there was nothing wrong with my thyroid except it was in the wrong place- it was the right size (the photographs showed the goitre increased in size during teens) and blood tests normal'.
2) the GP at home sent me to have sclerosing injections to scar my back which increased my pain.
I was not sure but Mum was very against doing anything. An operation was vetoed until ten years later, I was buying jumpers in M & S, and a stranger said 'go and have it done' showing me her scar. I had an ultrasound scan which involved holding a bowl of water above my neck and getting soaked. The heel prick test on babies was introduced in 1969 when I was aged 11 years.
Apart from the two thyroid operations, I had cataracts at 43, macular degeneration at 63, a vein op which didn't help leg pain, a hernia, a bladder prolapse, a bowel prolapse and pregnancy and birth complications.
With the first baby I had divarication of the rectus, which means my stomach bulges and I had malpresentation with my second son. He needed to be delivered by caesarean section, but the procedure was delayed, and he has severe cerebral palsy. Not because of my condition but because the correct procedure was not followed. Now I can't help wondering if the doctors might have been more diligent if I had been diagnosed. Sadly the college GP wasn't alone in dismissing my pain, another doctor said it was possibly the hard winter (of 1979) and when I asked another I was told he could not say how I would be affected as he could find nothing wrong.
I take 100mg levothyroxine but I have gone up and down lately. I realised that the taking of omeprazole especially too close had been linked to being too low and had a lecture about being careful to take meds away from other meds and food.
I am on diabetes meds (I think this another 'present' from my thyroid problems), an antidepressant for muscle pain and some supplements.
I also have chiropractic and massage treatments.
Do you have any comments about your medication or other treatment?
Being rare (one in 300,000) I have had to research and investigate my thyroid condition myself then present information to GP and then went privately for endocrinologist opinion.
How satisfied are you with the care you have had for your condition.
Dissatisfied
Please explain the reason for your satisfaction rating above
I slipped through the net as I had no proper investigation into the effect of hypothyroidism on me. It was a mistake to see me with my mother as she was always anti doing something to intervene and very operation phobic, sometimes with reason. She was very upset when I had my first thyroid operation in 1983 as 'there is a terrible illness in blood from abroad' (AIDS).
If you have been dissatisfied with your care please outline what steps you have taken to address the issues you are dissatisfied with
It took me about forty years to discover that I was right and the college GP wrong. I did ask about my pain throughout, but I did not properly link it until I read a research paper about the effect of low thyroxine on muscle development in the womb. Until then I had assumed that the link was that being underactive as a child I had not exercised enough so any activity over a certain point made me ache and subluxations followed.
When you find that you are in pain and there is a cause (more slow twitch and more fat cells and not strengthening properly) there is frustration when you realise that with a bit more curiosity and patience you would never have been undiagnosed with catastrophic consequences for your loved ones.
Do you see a GP or specialist? How frequently? How well do you feel you can communicate with them?
I see an endocrinologist privately - been to see him twice, recently and eighteen months ago. My GP does now realise that I do have 'endocrine myopathy' (as well as/instead of Fibromyalgia) hypermobility and arthritis.
How have you felt since diagnosis and how do you feel now?
More confident about claiming that I am disabled rather than inadequate. I feel frustrated and terribly sad about the consequences for my family.
Has your thyroid condition changed your life? In what ways?
I realise that I could have been miscarried or stillborn or lacking intellectually. My mother collapsed in 2005 with pneumonia and only then was it discovered that the illness which she had during pregnancy had caused the loss of her left lung. Vaccines for 'flu were introduced in time for the pandemics of the 1960s.
All through my childhood, I tried to keep up with my classmates physically but couldn't. While I didn't know that I didn't feel 'right' and I did not know that I was different, I accepted a lot of negativity when I was actually doing well within my own perimeters.
If there is one message you would like to share with other people who have just been diagnosed with a thyroid disorder what would that be?
Mine is an extreme case but, don't listen to people who have not experienced a condition that does not just affect one part of you but affects you all over. Pace yourself and remember to make time for oasis days.
If you had a message for medical professionals treating people with thyroid disease what would that be?
- People are unique and whilst the blood results may show they are 'normal', please be willing to adjust the dose slightly to see if it helps.
- If a patient is complaining of pain but pushing themselves to keep going, give them 'permission' to relax and give in to the pain rather than push them harder.
- Never tell a patient that they must have a low pain threshold if you don't know why they hurt.
- When a person in their fifties comes in with a walker don't criticise them for using equipment and say, 'use it or lose it' to which I replied 'I don't think I had it in the first place' and it turned out that I was right.
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