Editorial Note: This is M’s story. She outlines a Prescribing Cascade. In an email she also asks a question: does anyone have any evidence of SSRI withdrawal causing Vit D deficiency?
HRT started it all. Peri menopausal at 45, my GP did a FSH test and prescribed Climagest – oral oestrogen and progesterone. Hot flushes disappeared and I felt myself again.
Two years later, in 1999, I am diagnosed with a huge fibroid which the Gynaecologist told me had probably been caused by HRT. I’d had various symptoms consistent with a fibroid but had put it down to ‘my age’. I have a total abdominal hysterectomy and oophorectomy and recover well. At my post op consultation with the Gynaecologist I am prescribed transdermal oestrogen (Femseven Plus) which he tells me I can take for as long as I liked. He is a huge proponent of HRT and and an eminent Gynaecologist. I have no reason to doubt his advice.
In 2009, I retire from my hectic job as a Primary School Head at the age of 58. I decide it’s time to stop the HRT. I have quite severe flushes but no other problems and they disappear in a few months.
After my retirement, I spend two years travelling all over the world. Life is good – and even better when I meet my husband in 2010. My life has been dominated by work and I have never been married.
We marry in October 2011 and it is such a wonderful day. Three days afterwards I had a letter to return to Breast Screening. I’d had a routine mammogram just before we got married.
There we learn that I probably have an oestrogen receptive Breast Cancer. This is confirmed by the breast surgeon I see the following week. I have a lumpectomy in November 2011, followed by a second op for wider excision and a third op to drain a haematoma.
I feel fine. I am not at all fazed by ‘cancer’ and face the future optimistically. I have four week of radiotherapy and am prescribed Arimidex.
While they are measuring me up for the radiotherapy, there is an incidental finding which turns out to be follicular thyroid cancer. I have one lobe removed in April 2012 and, when the cancer is confirmed, the second lobe. I am given the replacement thyroid hormone Liothyronine (T3) pending treatment with Radioactive Iodine. I feel very well – full of energy. John and I go on long walks and all is well.
Again, I’m not too worried about the cancer. After all, Thyroid Cancer is ‘the good cancer’. My Oncologist seems concerned about my coping with the 3 day isolation involved in the RAI therapy. I’m at all worried about that. 3 days isolation with Jeremy Kyle, a pile of books and plenty of chocolate. No worries.
I’m not too worried either when the technician arrives in his spaceman gear carrying a large flask. He puts it on the table, removes a capsule with great dexterity, with instructions that I should drink it. He then flees from the room.
I swallow it with some trepidation and wait to see what will happen. I expect to turn into a glowing shape. However, all remains normal so I begin the first of several chocolate binges. The technician returns several times, still in his space suit and armed with his Geiger counter which rattles away at various rates of hysteria until I am deemed fit to rejoin the world. I feel fine – just hungry. I’ve had a few trays of hospital food slung through a hatch but they don’t quite hit the spot.
I have to continue the T3 until the following February 2013 when I have my 6 monthly scan to check that all the little demons had gone. They have. But new demons are on their way
It is time to be put onto Levothyroxine. Two weeks later, the problems begin. I have no energy, I ache all over and, for the first time since my health saga began, I feel as though I can’t be bothered with anything. I wonder if this deterioration has anything to do with the RAI – after all I’d signed a consent form which warned of the potential for another primary cancer.
My blood results show FT4 at 42 (top of range 22) and FT3 is 6.8. My TSH is suppressed as required. The registrar at Oncology says this is ‘perfect’ and that the high FT4 should be ignored. I don’t feel ‘perfect’. I have muscle pain, fatigue and all the symptoms of hypothyroidism. I phone the oncologist and she says that I probably have a virus.
As things get worse, I ask for a second opinion and learn that my high FT4 is making me feel ill. It is also probably falsifying the FT3 result. In short, I need to reduce the Levothyroxine and all will be well. It isn’t well, and neither am I. As the FT4 comes down to a more acceptable level, so does the FT3. I still feel like a dead thing.
Another visit to another endocrinologist confirms that I am not ‘converting’ T4 to T3 (not an uncommon problem it seems). The endocrinologist I see is happy to declare this as he is a proponent of Liothyronine (T3) – which I had taken so successfully after my thyroidectomy. He prescribes a combination of Liothyronine and Levothroxine. Gradually, things improve.
After a while, I begin to feel unwell again although the blood results look acceptable. The Endo tells me that some people are intolerant of Levothyroxine. He prescribes T3 only. Hooray. Result. I feel much better, though not as good as I had done when on this drug before. I decide that this is probably as good as it gets.
Then the CCGs under the guidance of NICE, declare Liothyronine to be the food of Beelzebub. Suddenly, my endo is concerned about my taking T3 – concerned about my heart, osteoporosis, my suppressed TSH – none of which had been a concern before. On these grounds, he puts me back on Levothyroxine – the same drug which he had declared unsuitable just months before.
There is no way I can go through this saga again. I know there is no way I will get T3 on the NHS and Private Prescriptions are exorbitant. After some research, I decide to buy my own Natural Dessicated Thyroid (Porcine NDT). I carefully calculate the dose I need. Now, 7 months later, my bloods are perfect. No conversion problems now. I wish I’d done it years ago.
During the early days of thyroid mayhem, when I was believed to have ‘a virus’, my GP decided that I was depressed. He puts me on Citalopram. I feel no better and wean myself off it after a year. Cross GP. I tell him I am not depressed, that I am just totally fed up with feeling poorly. He shakes his head. Depression.
As things get worse, mainly because of the inappropriate thyroid meds and also possibly because of the side effects of Arimidex (for the Breast cancer – fatigue, joint pain) he persists in his diagnosis and prescribes Prozac 20 mg a day. By this time, I am suffering dreadful migraines and he tells me that the Prozac will help. The Breast Oncologist, after calculating recurrence risk, stops the Arimidex in case it is a factor.
The start-up symptoms of the Prozac are truly dreadful, but after a couple of weeks I settle into a semi – comatose state of alternating indifference and hopeless despair. I go for my GP review. I have many questions. One of them is:
“How do you know that my brain needs Serotonin? Perhaps it’s got too much now.”
Doc tells me not to ‘overthink’ things and increases dose. Can’t even think, so hard to see overthinking as a problem.
I have also been diagnosed with Osteoporosis. I am given the dreaded weekly Alendronic Acid together with a Calcium / D3 supplement. I take it for a few months but symptoms of Oesophagitis and Gastritis increase. My stomach feels as though I’ve swallowed acid. I am scoped and given Omeprazole.
I develop urinary problems and spent most of the night on the loo trying unsuccessfully to pee. Paradoxically, I pee without difficulty almost all day. Meanwhile, the Calcium is doing its work and severe constipation sets in. I become achingly familiar with the floors and walls of most of the lavatories in places I visited.
It is decided to give me an oral dose of Oxybutinin to sort out he urinary problems. Within 48 hours, I am crazy. I go out and can’t remember my way home. Although retired, I am working to support a friend who is expecting an Ofsted Inspection. I am about as much use as a chocolate teapot. I can’t even remember how to spell ‘school’. She takes me home and my husband took gets me straight to our GP. He can’t believe it was the Oxybutenin (lots of older people have it – it’s widely prescribed. Grrr.) He has a good look at the BNF and then tells me it’s a rare side effect and I must never have it again.
As time passes and I refuse to touch Alendronic Acid with a barge pole, my stomach settles. I stopped the Omeprazole. Within a couple of days, the wee problems stop. I read the leaflet. Another ‘rare’ side effect.
The Oncology team become concerned that I am having no meds for the Osteoporosis. A bright new star of a registrar suggests I start Boniva – a monthly dose of Ibandronic Acid.
“At least you’ll only have indigestion once a month” he beams.
The word ‘acid’ strikes terror in my heart but I know my T scores have dropped at the last DEXA scan and give in. I take just one dose and the effect is devastating. I have crippling fatigue and body pain – flu symptoms from hell – and they stay with me for months.
I never take it again.
By now, I’ve had migraines for several months, almost 24/7. I go to see a Neurologist privately who tells me that my brain needs to be ‘rewired’. He prescribes Topirimate (actually licensed as an anti-convulsant). After a month or so, I wean myself off it. It has obviously lost its rewiring technique and is sending me crazier than the Oxybutinin. I fear for my sanity. The migraines rage away relentlessly. We are now in March 2017. I do a bit more research. I start to take magnesium and mega doses of vitamin B12. In three days, the migraine goes away and I haven’t had one since. (Not claiming to know why!)
The Prozac still isn’t going too well. My legs feel as though I am wearing lead boots. I can’t lift my arms. Showering and washing my hair became a major issue involving a lie down afterwards. My husband takes over the cooking and household chores as I crawl around the house like a sloth and withdraw from any sort of life as I knew it. I don’t want to see people. My emotions are blunted, if non-existent. I am so desperately sad but I can’t cry – or laugh or express any feelings at all. My family and friends fight to understand but I am just too tired and dispirited to even try to explain.
Once again, I seek a consultation with someone who I hope can help me. This time a Psychiatrist. Perhaps I’m on the wrong antidepressant.
This wonderful lady talks to me for over an hour and has to endure (at her request) the story of my life. She concludes that I am a high functioning individual who is ‘sad but not mad’. She write to my GP to say that I require no pharmaceutical intervention and that, furthermore, it is counterproductive.
My GP keeps me on the Prozac.
My husband took me once more to see him. He now suspected that I have all the symptoms of fibromyalgia and chronic fatigue. He refers me to a rheumatologist. I’ve seen more ‘ologists’ than I can remember. Because of my history of malignancies, I’ve been investigated with care and concern. I’ve spent hours in CT machines. MRI tunnels. I’ve had so much blood taken that I feel as though I’ve got caught up in some horrible vampire movie. These tests have thrown up a few random results –interstitial cystitis, hiatus hernia, a polyp in my bowel. All very interesting but no light shed on my current state.
In October 2017, I decide that I want to stop the Prozac. GP tells me it’s an easy AD for withdrawal. One on alternate days and then stop. That didn’t work. I soon start to go into withdrawal and decide to go back to the beginning and discontinue them very slowly. I get down to 2.5 mg at end of January this year. Cracked it. No, not quite. Feel a bit iffy – but then the nightmare begins.
I developed nerve pain in both knees and legs. Darting, creeping, stabbing. At night the pain itself disappeared and is replaced by an appalling burning pain from feet upwards into my knees.
Two weeks ago I saw the Rheumatologist. She examines me carefully, takes a history and diagnoses me with Fibromyalgia and Chronic Fatigue. She’s not convinced, though, that the nerve pain in my legs is part of it. She orders Nerve Conduction Tests and mentions that Prozac can cause Peripheral Neuropathy. Dear God. I am to go for these tests at the end of April but I shall go with a heavy heart. I know that the only answer will be a lifetime of Gabapentin or a similar drug.
I ask the Rheumatologist what causes Fibromyalgia / CFS. She tells me that no-one really knows but that it can be the result of trauma and that it cannot be cured – only managed.
I recovered from two cancers without any problems. To my mind, the only ‘traumas’ I have suffered are those imposed upon me by medications. My body has been savaged beyond reason.
She prescribes the Gabapentin 300 mg bd. I take them for a week. Then I panic that this is yet another drug from which I shall have to withdraw. I decide to stop it – and two nights later wake up with legs like deep fried chicken legs. My husband finds me, weeping, trying to get into a cold bath to put out the fire. I get stuck in trying to do so because my dysfunctional knees (osteoarthritis) decide to seize up. John hauls me out of the bath, gets me a Gabapentin and holds me tightly until it kicks in about two hours later.
I can’t believe what has happened to me –not in the name of illness but because of inept, ignorant and thoughtless prescribing and avaricious pharma.
As I sit writing this, my mind drifts back to our honeymoon. We are walking hand in hand along a beach in Paphos, Cyprus. I do not have a care in the world. I know that I will never do that again.
Ironically, I am now depressed for the first time in my life.