One of my fears on being diagnosed with Hashimoto's and being put on thyroxine was that the tablets might force my T4 hormone too high and push me over into hyperthyroidism.
I had read that people could switch from one to the other if the medication did not suit. The thought of being hyper, nervous and anxious, traits I have battled with all my life and used complementary therapies such as acupuncture and meditation to tackle, terrified me. For me, intense feelings of anxiety and nervousness are less desirable than a hypothyroid state, however ill I had been feeling.
I had been grateful to my GP for diagnosing me. I had heard horror stories of others whose doctors were not so on the ball. A cousin of mine, for example, who was diagnosed about six months after me, was originally told she had glandula fever. She did, but she was also hypothyroid. Even when she told the doctor her mother was on thyroxine tablets, he told her she was too young to have a thyroid condition.
Clearly a doctor that needs to go back to medical school. You can have a dodgy thyroid at any age.
At this stage, dear reader, I must apologise for using such a stupid name (no offence to any Hashimoto's out there including the clever bod who discovered Hashimoto's thyroiditis). I have only done this because I think I can be more honest writing in cognito. I have no preconceptions to protect.
My GP dismissed my use of vitamin and mineral supplements and said to chuck them away. He failed to adequately answer my query about whether the amount of iodine in my multi-vitamins were safe. He also failed to adequately answer my nutrition queries. I’ve read that soy is bad for hypothyroidism. I eat lots of tofu and soya mince as well as Quorn. I have not been able to get any satisfactory advice on this. And different people have given me conflicting advice from my chiropractor to my acupuncturist.
I needed to know, and indeed still need to know, why I have this. If my own immune system is attacking a part of my body – why is it doing this or are there other underlying reasons? I wanted to know what natural and dietary things there are to help my condition. And I needed some respect and understanding for the fact that, if possible, I wanted to be weaned off medication once the condition had been stable for a while and the need to find natural means of stimulating my thyroid to produce the necessary thyroxine.
None of this advice was available. I did go to see a London consultant who very patiently explained the condition to me but at the end of the day did not give me the nutritional advice I needed.
I came away thinking that I suffered from a disease that no one really understood, and indeed, this was an accurate deduction.
They know more about Hashimoto's in the US and, of all places, Israel, where they do more detailed blood tests. Here, in the UK, the lack of knowledge is atrocious.
I started to keep a diary from the day I started taking thyroxine. I kept this up from Feb 1 2005 to Feb 8 2005 but stopped thereafter because I thought I was getting obsessive and, frankly, I did not have the time.
I made ocasional entries in April and May when there were significant developments and, again, I have published them here for your interest.
Writing this blog is different. Blogging is a new concept to me, it's exciting, I feel I can help other people in my situation, maybe teach the medical profession a thing or two should they stumble across this site.
So, dear reader, for your benefit, I present to you the very brief diary I kept. Those of you who are hypothyroid may identify with what I write. Those of you who are not might, hopefully gain some understanding.Feb 1 2005
I took my first dose of 50 mcg on empty stomach at 5.20am. Felt at my worst today. Seem to have reached rock bottom with this. Totally knackered. Burning throat, aches all over. Got bad headache in the day but I did Yoga and after I finished the meditation part of the exercises my head had completely cleared. Far preferable than my usual Panadol Extra.
Daily food: 1 cup of black coffee, one fried egg between two pieces of toast, one banana, white pasta made with olive oil, garlic, mushrooms and porcini mushrooms, one glass of apple juice, copious amounts of water as always, curried lentils and white rice, salad containing asparagus, tomatoes, red capsicum, rocket, sugar snaps, fruit platter with melon, apple and dates.
Took 50mcg at 5.30 am. Went to the toilet this morning and for the first time in ages, it was normal. This must surely be a placebo effect, albeit a powerful one. GP said I wouldn’t start feeling improvements for about 10 days. My throat isn’t burning as much this morning. I am drinking one cup of strong black coffee as per usual at about 7am while working. Hope this is okay when I am on thyroxine. I usually only drink one cup of coffee a day. It is 11.36am and I am feeling very tired. Legs feel heavy. Calf muscles quite tender, face feels blotchy. Didn’t feel so hungry at breakfast and couldn’t eat much of it – for a change. 1pm: feel very cold after lunch. Sleep for a couple of hours beginning with a meditation tape in afternoon from 2pm-4pm. Get up and work until 5pm. Begin to fade very rapidly in the evening.
Daily food: One cup of black coffee at 7am, organic porridge made with water, with added banana, brazil nuts, pumpkin seeds, curried lentils and rice for lunch. Organic apple juice at about 6.30pm. Dinner at 8pm: peas, TVP breaded fillet and potato lutkas.
Felt pretty groggy when I got up. Black coffee 6.50am. Gradually perked up. At 9.20am, I’m feeling pretty buoyant. I’m climbing stairs much better than I was. I can feel something changing, albeit early days and only day 3 for the tablets. My mind started to come up with creative ideas again in the shower – my life blood. Don’t care if it’s a placebo affect at this stage. I’ve always believed the mind and spirit is more powerful than the body and can create disease as well as cure it. I believe I’ve created my own thyroid problem and that I can also cure it. I acknowledge I have to take the tablets but I want to look at other ways as well of kick-starting my thyroid and self-regenerating it naturally so that one day I can wean myself off once my body has got used to the right levels in its system again. My left eye was twitching badly first thing this morning. I’ve stopped the calcium supplements for the last two days because I want to know categorically if the eye tics are due to the thyroid problem. So I’m going to give the thyroxine a chance to kick in so I can observe what happens to the tics. 11.42am feeling very cold.Feb 4
Constipation returned today. Minor muscular spasms near nose and on face. Perplexed by conflicting advice I keep getting about kelp and soya (Do I? Don’t I? Are they harming me? Some say to have it, some say don’t – terribly confusing. I’m coming to the conclusion my diet has had nothing to do with any of this. I suspect non-specified environmental causes. I wonder if the massive HP laser printer I sit less than two feet from has been instrumental in this. There was a funny smell coming from it a while back after it was serviced (ozone?) Spoke to someone at the Thyroid Foundation today re my queries on soy and kelp. I’m very underwhelmed. Not impressed at all with the organisation or the material they send out. Got sent four books today I ordered from Amazon, one of which, in particular, looks really good, The First Year Hypothyroidism
. The others are Thyroid Balance
, Thyroid Power
, Living Well with Hypothyroidism – What your doctor doesn’t tell you that you need to know
Food: Ate small portion of organic porridge made with water for breakfast, with pumpkin seeds added.
Lunch: had two and a half potato lutkas and an egg-and-onion roll (brown)Feb 5
Dinner – a bowl of home made soup with potatoes, beans, onion, garlic, salad with celery tomatoes, carrots, rocket, olives, mixed nuts and seeds (not peanuts)
Desert – fruit (blueberries)
Went to toilet OK this morning. Lay in to 7.45 and had my thyroxine at this time instead of the 5.15-5.30 I have it mid-week. Feel a bit “spacey” several hours after taking it. Very slight underlying frontal headache which I can manage without taking anything. I’ve not had any painkillers now since I started the thyroxine after conquering the first really bad one with Yoga on the first day. Had interesting reaction from people when I tell them about my condition. A bit perturbed by the reaction of Rachelle whom I’ve known since age 11. “Oh that’s nothing, I thought you were going to tell me something much worse.”
Yeh! Right. I’ve got to be on f***ing tablets for the rest of my life, my own antibodies have destroyed part of my own body, I feel like shit and you call it nothing” – right thanks. Don’t call me I’ll call you! A 4ft 6 woman of about fifty something attacked me in Caffe Nero in Edgware today (yes really). She had apparently said "excuse me" and it seemed I hadn’t heard her the first time. When she next said "excuse me" she said it in such a rude way, I calmly said to her: "I’m not moving anywhere unless you rephrase that and say it with a bit more manners" at which she started pushing and shoving me. She started pushing and shoving Yoko (pseudonym for my wife). Not long ago I would have flown off the handle at anyone laying a hand on me. My heart rate didn’t even speed up. I was as calm as if nothing had happened. I calmly asked the person behind the counter to call the police. (now that’s one of the positives of this condition and I think it is also teaching me what it is like to be calm in the face of adversity) My wife explained to the woman I was hearing impaired and I hadn’t heard her the first time but that was no way to behave. Someone who was with the woman dragged her away. I think she had issues! I don’t think I should have had black coffee. I didn’t sleep well that night but I was also very worried. I took my blood pressure with our digital reader which is an expensive and highly accurate one. My diastolic has gone up from it’s normal 70-77 to 90-93. That scared the crap out of me. A normal diastolic for a healthy person is about 80.
Daily food: Breakfast: one fried egg in a white toasted roll (have decided now only to have egg once a week because hypothyroid people are at risk of increased cholesterol which is found in egg yolks), one cup of boiling water with a slice of lemon.
Lunch: Quorn, rice and peas and salad, an apple
Dinner: home-made pizza on brown French bread.
I got up at about 7am because I couldn’t sleep. Did my autogenics while I went to the toilet. This eases the constipation. It actually came out rather fast this morning and felt like it might be diarrhoea but when I checked it wasn’t. It just came out like gun fire. My heart felt like it was racing much of the night. I went downstairs, lit a candle and did Yoga. It was very calming. I then took my blood pressure, expecting it to have gone down. At 8am in the morning my diastolic was 93 for the first reading, 90 for the second and 91 for the third. I decided that it was important to keep exercising. I’ve let that go a bit since I developed all my symptoms. I jogged for about a mile, fairly gently but I did it pretty comfortably just the same and while I jogged I resolved that this condition was not going to control me. I would control it. Having read about the associated risks of diabetes, arteriosclerosis and heart disease, and the books I’ve been reading describing hypothyroidism as a condition that is life-changing, it put the willies up me. But I decided I would try to cut back work where it was possible to do so without sacrificing my financial responsibilities. I also resolved to get back into an exercise regime and have decided to make sure I exercise every day be it jogging like I did yesterday, or going to the gym, or swimming 50 lengths. I am going to bring my blood pressure down. I refused to be in a situation whereby I have to go on blood pressure tablets as well. Thyroxine is quite enough thank you.
When I came back from my jog, I had a bath and noticed that the muscle above my knee was in spasm. Also, my gums are still bleeding sometimes when I brush my teeth.
Question: I notice from the leaflet that comes with my tablets that my Levothyroxine Sodium is actually the new name for Thryoxine Sodium. I am supposed to be on a low-salt diet because I also have Meniere’s Disease. Sodium increases the risk of vertigo that is characteristic of Meniere's – that I know to be a fact. Also is the sodium having an effect on my BP? Must check with GP and/or specialists.
Food: Organic porridge made with water, cinnamon and pumpkin seeds, pizza for lunch and a mixed leaf salad.
Dinner: mushroom burger (no bun or bread), rice salad, fruit.Feb 7
Tiredness really bad – slept most of the afternoon after meditating. Had headache which intensified as the morning went on.
Once again, meditation got rid of it. Went to my spiritual healing group in the evening and Maria gave me a healing. Felt icy cold around my head. She said she detected zilch energy coming from my body
Food: organic porridge made with water and pumpkin seeds and cinnamon. Lunch: egg & onion beigel and a slice of tortilla.
Dinner: small jacket potato with a mixture of kidney beans and onion.Feb 8
Feel more energised this morning – probably because of all the sleep I had yesterday afternoon. Also eliminating coffee from my diet (third day now) appears to be agreeing with me. Toilet was fine this morning – not perfect, but much better than it was pre-thyroxine. Back muscle still hurts from when I prematurely tried to exercise and also my calves. When I dried my hair with the hair dryer my arms felt heavy. Muscle below the knee a bit painful when I walk. BP taken by my digital machine at 8.45am 134 over 90. Got to get that down to 120 over 80. Don’t understand why the diastolic’s that high – always used to be 70-80 max. GP hasn’t returned my calls. I need to speak to him about the blood pressure, tell him about the referral to the endochrinologist and need a print out of all my blood test. All it takes is a two-minute call from him to ease my worries about my blood pressure – maybe it’s normal when you first start taking thyroxine. None of the books I’ve read mention this, though. The receptionist at the surgery who takes my call, doesn’t seem very bright and gives up taking the three main points of my message so I have no idea what will get through to the doc although she says she’s sent him another e-mail. Weight has gone down from 11 and a half stone to 10stone 121bs since I started the thyroxine. My weight should be 10-10.5.April 22
1)I got thryoxine tablets manufactured by Alpharma – different manufacturer than before. I know GP/specialist will try to dismiss this as psychological, but they are having a different effect. When I take this new batch, I get a spacey feeling after about 30 minutes and in the last week since I’ve started these I’ve suffered really bad depression, had a panic attack in a meeting with my publisher and I’ve been really nervy, tense and twitchy. I’ve always been highly strung but for the last 10 years, I’ve had good control over my nerves and tension due to the practice of Yoga, autogenics and regular use of a health club (gym, sauna, steam). I seem to have had less conscious control over my anxiety and tension, in fact since I first started thryoxine and it has got worse since the chemist gave me a different manufacturer’s product.2)Although in the early stages the constipation improved, I still have a problem with going to the toilet. While I am mostly managing to go once a day, and my chronic farting/flatulence had greatly decreased, I am very distressed by the fact that while the first bit of faeces comes out easily, I have to use a great deal of toilet paper to get the rest out otherwise I’d be sitting there all day. I have the need to have a shower every time I go to the toilet. I can’t emphasise enough how distressing I am finding this.
3)My energy levels are much, much better, although I have good days and bad days. My main concern is the effect the thyroxine is having on my anxiety/tension levels and mood changes.
Going back to GP today. I had been feeling hyperactive for a while after changing to brand called Alpharma. Consultant had suggested dropping one tablet at the weekend but after seeing GP a few weeks ago, decided not to do that as my blood tests came back normal. He said it would balance out. He prescribed me beta blockers for the panic attacks I’d been having but decided not to take them as that, for me, would be “losing the fight”. Spontaneous bruising including big black eye. Had blood clotting tests on Monday. Doc says it’s got nothing to do with the thryoxine. I’m not convinced.
For the last week I have been getting very tired again, needing to sleep/rest in the afternoon. Muscles in the backs of my leg hurting. Left eye lid has begun twitching although not as severely as pre the hypothyroid diagnosis. I suspect my thyroid has burnt out a bit more. Also been feeling the cold greatly again.