Hormone Choice Singapore has been contacted by Linda Thipthorp, a thyroid patient advocate in UK, who has shared her long struggle with thyroid related health issues. (See below and http://www.hormonechoicesingapore.com/…/its-not-new-2001-do…)
She offers help and guidance to those who are struggling with trying to get the right treatment for their thyroid issues.
My Story – Linda Thipthorp
Born in 1955 with lingual thyroid (in the tongue) – not diagnosed.
As a youngster: Always suffered from tonsillitis and had antibiotics frequently. Bouts of exhaustion.
Teenage years: Once menstruation started horrific periods. No energy, heavy periods, fainting through pain. More bouts of tonsillitis. Put on the pill at the age of 11 years by GP to curb the bleeding.
Two successful pregnancies, 2 miscarriages.
1983 aged 28 years: tonsils removed, was told a third tonsil had grown, body very acidic. Tests revealed lingual thyroid. No arteries or thyroid tissue in the neck all in the base of the tongue. Thyroid blood tests proved “within normal range”.
30’s: Periods became heavier and heavier, hysterectomy advised at the age of 39 years due to prolapsed womb. Operation carried out in January 1994. Ovaries were left. Good health for 18 months then suffered chronic chest pains and indigestion. Went to see my GP and was given HRT patch. Admitted to hospital many times with chronic pain; advised to have gall bladder removed, which was carried out.
January 1996: Exactly 2 years on from the hysterectomy chronic symptoms developed: eyesight fading, sweating, severe thrush, extreme fatigue, couldn’t swallow properly due to thyroid gland swelling. Had various thyroid function tests carried out but was told I was “within normal range”. No thyroid hormone offered. Through the pain of the gland growing out of my tongue I was admitted weekly to the hospital and had to have pethadine injections to control the pain. After several months it was decided to kill the thyroid gland and I was administered Radio Active Iodine. This was carried out in the summer of 1996 (still taking HRT in patch form).
Horrendous pain, cortisone was given in very large doses to control the swelling which caused severe oedema. When gland had died after a few months thyroxine (T4) was given controlled by the blood tests.
January 1997: collapsed with severe head pains. Couldn’t see properly. Was rushed to a Professor in Guys Hospital in London. Through damaging the thyroid gland it had developed scar tissue and was thought to be pressing on a nerve. The Professor was appalled that I hadn’t been offered any thyroid hormone. There was no alternative but to have the gland removed and this was carried out within the month.
I was told that I could be dumb if the operation did not go well. The tongue was split down the middle to the base and the thyroid gland removed. I was told it was a perfectly healthy gland. Had to have a tracheotomy as my tongue swelled and blocked the airway. My mouth split due to the swelling.
Left hospital but within weeks my health took a dramatic decline. Was told that it could be my ovaries. Recommended to visit a specialist at the Lister Hospital, London to have an oopherectomy. Paid privately and was admitted within weeks. He said that these were the cause of my illness. Had the ovaries removed and HRT and testosterone implant inserted.
Two weeks later health took dramatic decline once again; this operation had only made matters worse. The HRT was blocking the thyroid medication but I did not know this at the time. Visual disturbances, extreme blurred vision, hardly had the energy to walk properly, horrendous pain in head, panic attacks, anxiety attacks, fluid retention, muscle wastage and weight gain. The pains were so bad that I then lived on sleeping tablets for one year, taking one morning and night. The pain was so unbearable I couldn’t bear to be awake.
Thyroid function tests were showing that I was going toxic. From 200 mcgs T4 I reduced to just 70 mcgs. Could no longer walk and crawled on hands and knees. Continually freezing cold pulse 42. Semi coma state. Drifted in and out of sleep for months. To be asleep was the only way I could cope with the bodily pain. Migraines were constant.
Was told by the Thyroid Support Group to contact Dr B Durrant-Peatfield. Managed to get an urgent appointment with him and attended his surgery. He examined me thoroughly and immediately diagnosed the problem. I was severely hypometabolic. My body was closing down through lack of thyroid hormone. He told me that thyroid blood tests are extremely unreliable. These patients go on to develop diseases such as ME, Fibromyalgia, CFS, heart disease etc. etc. He told me that the T4 hormone that I was being prescribed was not converting in the liver to the active T3 hormone and this is necessary for the body to function. He took me off T4 and I was put on T3 only. After only 3 days the pains in my head started to abate. After a few weeks I had the energy to walk further than the 100 yards that I had been restricted to during the last 18 months. I continued to improve but I was still covered in Fibromyalgia pain.
I discovered that Dr J Lowe & Dr G Honeyman were specialists in Fibromyalgia in the USA. I needed more help to rid my body of pain and so flew to Tulsa, Oklahoma for their advice. Dr J Lowe is a brilliant scientist and doctor who has realised the connection between insufficient thyroid hormone at the cellular level and Fibromyalgia, the crippling arthritic disease, which is missed time and time again through the reliance on these blood tests and T4 only. Although much improved I needed extensive ultra sound treatment on my muscles, I increased my T3 and exercised to tolerance. At last the pain was abating. The muscles had become tight through my thyroid starvation and Dr G Honeyman-Lowe treated me for a period of 2 weeks.
Dr Lowe states:
“There is no credible scientific evidence that the use of thyroid lab tests improve patients’ symptoms or their health. On the other hand, we have ample scientific evidence that the tests don’t.
The problem with the tests is this: Conventional thyroid specialists arbitrarily decided that the aim of treatment for hypothyroidism should be to get the patient’s lab test results right where the doctors prefer them to be. If the lab test results are where the doctor prefers them, then the doctor pronounces the patient well. The conventional doctor does this with total disregard for whether the patient is still ill or not with hypothyroid symptoms. If the patient complains about continuing illness, which most do, the doctor dismisses the continuing illness as a feature of some other undetermined mysterious disorder. Hence, thanks to the conventional thyroid speciality, we have widespread “new diseases” such as fibromyalgia, chronic fatigue syndrome, and ME. . . .
This conventional medical approach to the “care” of the hypothyroid patient is not scientifically derived. . . . The thyroid specialty has imposed this pernicious medical protocol on practicing doctors and their patients. The imposition has resulted in a worldwide public health crisis. Scores of millions of people remain ill because of it, and incalculable numbers of people die prematurely from it, either from cardiovascular disease or suicide.”
Through a large majority of the population being missed with these blood tests “new” diseases have developed. They are nothing more than inadequate thyroid hormone in the muscles and tissues of the body. Spanish scientists have done intensive studies and have proved this but, as yet, the medical profession has ignored them.
I should never have been prescribed HRT. Little did I know that HRT and the Pill are anti-thyroid drugs, they block the thyroid from working properly. Natural hormone replacement can be given but only when the thyroid is balanced and strong.
I have regained my life through the dedication of Dr B Durrant-Peatfield, Dr J Lowe & Dr G Honeyman-Lowe.
I now run my own helpline to give people information I have learnt through my own suffering.
Lyn Mynott runs Thyroid UK which is a support/campaign group in the UK. They support people with both diagnosed and undiagnosed thyroid disease. Many of these people have become well again after being treated by private doctors like Dr Peatfield.
Dr Peatfield tries to get the body back into balance once again. Surgery destroys the delicate balance of the body and hysterectomies cause a massive endocrine shock. If a woman’s body is low in thyroid hormone for many years then the imbalance makes periods heavier as the oestrogen/progesterone balance is disrupted through low thyroid hormone and the body becomes acidic, the end result normally being a prolapsed womb and hysterectomy. Endometriosis is also a problem through this imbalance and I have recently undergone a 6 hour operation to remove this.
Through my horrendous experience I have been able to help my two daughters and mother who suffered from thyroid disease; sadly I lost her. Her Armour thyroid medication was changed to T4 only and she didn’t last long after this. I believe she had a conversion problem like me. My youngest daughter aged 21 was beginning to go down the same road as me but with the help of Dr Peatfield she was diagnosed and treated. She has regained her health and can get on with her life.
I urge doctors to look at the patient’s symptoms and not to rely solely on the blood tests. If this form of practice is changed we will then turn the corner and eliminate these “new” chronic diseases that are plaguing our hospitals.
I will carry on my work in helping thyroid suffers in the hope that my suffering has not been in vain. I pray for the day the medical profession understand the enormity of the problem that these tests are causing.