Stories Change Lives
My Guardian Angel - Thanks a Million!
Many thanks for your wonderful advice many months ago. I have taken a while but my health has finally improved. You were my guardian angel at that time, and if not for the help and advice of your thyroid support group, I would still be laying around, crippled and in a daze, 24 hours a day.
I have been wanting to write for months but only now has my health improved enough to organize myself. I thank you so much for listening to my complaints and giving me good advice, which helped me to get my life back into some sort of order.
To recap: I had been diagnosed with Hashimoto’s Thyroiditis in January 2000, after 10 years with all the symptoms and problems it causes. My TSH was 14 (range .5-5.5), and my T4 was 10 (range 10-23), but my then GP didn’t treat me and at that time I knew nothing about thyroids.
By 2002 my fatigue had increased severely, blood tests revealed T4 now 5 (range 10-23).
My doctor prescribed 50 mcg of Oroxine. After 3 days and only 1 tablet per day, I collapsed and ended up in Intensive Care, on heart monitors and oxygen for 3 days, with angina, tachycardia, severe fatigue, exhaustion and breathlessness. All heart and lung tests proved normal. So, I was given beta blockers and my thyroxine was cut down to 12.5 mcg per day. It took 5 months to get my thyroxine to 75 mcg because of the severe reactions to the increases. My health deteriorated rapidly with each increase.
In July 2002, my blood levels were normal according to my GP. TSH was 0.8, T4 was 14, and T3 was 3.8. But I couldn’t breath, talk, think or walk properly, and I was bed/couch ridden all day. Along the way I had seen two endocrinologists, a lung specialist and two heart specialists, and all said that everything was normal.
Then in July I tried to hang out the washing on the line, but clasped and laid on the grass for half an hour till I could crawl back inside. I turned on the computer and found your support group – determined to get some answers from someone. From your good advice I did indeed get to visit a Sydney doctor (who has Hashimoto’s) and she has got my health back to some normality. My husband had to practically carry me along the street as I couldn’t walk more than 20 metres without stopping. I couldn’t talk very well for getting out of breath and the brain fog, memory, concentration was so bad the doctor had to talk to my husband.
After many blood tests and another near hospital visit all other concerns were normal, leading everything back to severe hypothyroidism (at the cell level) and adrenal issues. Apparently, I had thyroid troubles since puberty; all my medical problems strongly suggested this. Further blood test results revealed:
Hashimoto’s (high antibody levels)
B12 insufficiency
Borderline Diabetes
Low T4, T3 levels
Adrenal insufficiency
High cholesterol
Abnormally high Reverse T3 levels
Low DHEA
Low Estradiol and Testosterone
The medication I am now taking is as follows: Thyroid Extract, Synthetic T3, Hydrocortisone, DHEA, B12, Magnesium, and Zinc. The doctor said I was the second person only, she has seen with such high reverse T3 levels – my cells were well and truly blocked. I am sure you are familiar with all this.
My new doctor encourages education – having revision questions with each new visit. I have had to study hard about thyroid and adrenal problems as I am stuck with them. The internet has been great. I read everything. Having been off work since Xmas, time is plentiful. Only this last month have I been walking with considerable speed, doing small jobs outside, and feeling somewhat normal. Aches and pains are still a big problem, but changes in medication upwards is helping with this.
I would hate to think what I would have been like now if I hadn’t changed doctors. I have experienced first hand the lack of knowledge about thyroid conditions. Since my troubles, my three sisters and mother have been diagnosed with Hashimoto’s antibodies, Fibromyalgia, nodules, and mitral valve prolapse have also been diagnosed. My remaining brother tested normal but has lots of aches and pains. We often laugh and wonder if we could break any records for this.
Thank you again for being there when I needed someone. I have probably rambled on with my troubles. I’m sure you have suffered similar, but when you feel well you feel like telling the world. Today I joined the thyroid association and look forward to more information and news.
Thanks a million, take care always,
L.S.
T3 Let Me Live Again
I am a 41 year old female who was diagnosed with Hashimoto’s Thyroiditis nine years ago. For eight of those nine years I had a pretty pathetic life.
I had a huge goitre, overwhelming fatigue, muscle pain and weakness, depression, brain fog, slurred speech, migraines, blurred vision, a puffy face and a puffy body. When I was feeling at my worst my pulse was 53 and my blood pressure was 87/47. There were days when I felt so weak and depressed that I contemplated suicide. I don’t know how many times I would just burst into tears in front of my young child. Sounds bad!! IT WAS!!!!
At the time I was taking a big dose of 200 mcg of T4. A lot, considering I am a small person. My endocrinologist said that my T4 levels were in the normal range. “It can’t be you thyroid,” she said, “I don’t know what is wrong with you.” I fired that doctor and set out to find what was wrong with me.
I searched the Internet, read books, talked to others with this disease. After months of studying the disease and the role of T3 in your body I knew that without question I needed T3. Loading my body with T4 was no good to me if it was not being converted into T3 or being utilised by the cells properly.
I convinced my doctor to let me try some T3. My T4 was cut back from 200 to 150 mcg daily and in addition I took 12.5 mcg of T3. Do you want to know how it changed my life? Let me tell you!
Within one month of taking the T3 I started working 20 hours a week. The “brain fog” disappeared so quickly. I was intelligent and sharp like I used to be. It was like I had been living in a haze before. I no longer needed a two-hour sleep every afternoon.
Over a period of about 5-6 months my appearance changed. I lost that puffy look and no longer had goitre or two chins. My skin was less thick and it developed a smooth texture. I literally looked 5 years younger and felt 10 years younger. Blurred vision- GONE!! I don’t even need to wear glasses to drive anymore! Heavy periods- GONE! Just as well I didn’t have an unnecessary hysterectomy. My hair one year later is soft and shiny and my nails don’t peel and break anymore. I run on the treadmill and do weights at the gym. I have been able to lose 6kg that I could never lose before the T3 treatment. I am a small person. I knew that my weight gain was due to my thyroid levels being out of whack. I have my bright cheerful personality back again and can now work 8 hours and still have energy to go to the gym. My pulse is up around 73 now and my blood pressure is 110/70.
For 8 years I was a bloated, exhausted, depressed invalid who could hardly look after her child some days. Every single doctor I saw in those eight years seriously under treated me. I have before and after photos that would amaze you. My face was so swollen up. My goitre was enormous.
For doctors to assume that every bit of T4 you take is converted into T3 successfully is beyond me. I am not a scientist but I feel like I have proven through my testimony that some people just don’t covert T4 to T3 properly.
You get ONE chance at life and I was damned if I was going to spend the rest of my life with such poor health. My life is so different today to what it was a year ago. I could not have written this article a year ago. I must add also, that I need a higher T3 dose in the winter and in times of great physical or emotional stress. I live in my body and know exactly how much thyroid hormone I need. I have regular blood tests and when I am feeling at my best my T3 levels are always at the upper end of normal.
If you feel well on T4 alone then don’t mess with your treatment. If you don’t feel well you owe it to yourself to find a doctor who will let you try some T3. Make sure you get the slow-release form that is made up from a compounding pharmacy. If you still have a lot of thyroid symptoms then you are not being treated properly. Be assertive with your doctor. Don’t ever give up!!!
I have this to say to all the specialists that didn’t think I needed T3. SHAME SHAME SHAME! How could you look at me with my puffy face and list of symptoms and say T3 is not necessary”? For goodness sake listen to your patients and at least test T3 levels. Slow release T3 has made my life worth living again.
Thank you to the doctor that finally did listen to me, and to the pharmacy that made up the slow release T3.
Good luck to all those people who are still suffering. I hope you can live life again like I am.
-- Anonymous
I am Grateful
The following is my personal experience of Thyroid Cancer.
I did not have a family history of thyroid cancer nor did I give such a disease any thought. My reason for going to the doctor in the first place was a persistent cough and a feeling of pressure in the throat. I had numerous tests, including a nuclear x-ray and a biopsy, that all proved negative but it was decided to operate to remove some nodules from my throat.
Whilst removing the nodules the surgeon believed that the sight was malignant and a biopsy was done after the operation which initially returned a negative result however the surgeon insisted on another test and this time it was found to be positive.
So, one week after having part of my thyroid and some nodules removed, I again went into the operating theatre to have the remainder of the thyroid and some surrounding tissue removed. Following the operation, I had a dose of nuclear medicine to eradicate any remaining cancer cells. This consisted of swallowing a tablet and sitting in complete isolation for four days. There were no adverse side effects of this treatment apart from being isolated.
The specialist involved with me was very good in explaining the operations, the treatment and the follow-up procedures and was very helpful. Although my recovery was very slow things progressed quite well. The difficult part was getting the required levels of calcium and thyroid hormone correct and balanced and this took many months and even now, 8 years later, needs monitoring.
Today my main problems include tired and aching bones, and the fact that I feel the cold terribly and have difficulty getting warm even when others around me are comfortably warm, during the operation part of my vocal cords were damaged and consequently my voice is not as strong as it used to be which is a minor problem.
I had follow up scans every three months for the first 3 years and now have a yearly scan and a bone density scan every 2 years, my dose of Oroxine (thyroxine) is 200mcg one day and 175mcg the next.
At the time of the operations, I was really too sick to think much about the future but am grateful now for the work and dedication of all the staff involved then and since."
- Beth
T3 for Me was the Key
I am a 59-year-old woman, excited about feeling well! Since early teens I suffered constantly from migraine headaches - there seemed to be no relief. Then in my mid 20s, after the birth of my daughter (1967), I lost a lot of weight - I looked like a scarecrow. As well, I started to experience periods of depression that grew in intensity and length over the years, until I was finally admitted to a psychiatric hospital. Eventually I was diagnosed as a Manic-Depressive. I was prescribed lithium. It helped in reducing my emotional highs a little, but I still often felt suicidal.
In 1993 I felt ill in a way I couldn't describe - I wondered if I was going to die - it felt as if my whole body was rotting. And I was running a temperature of 37.8 constantly, as well as having constant panic attacks at night and spasms of intense (illogical) fear during the day. Arthritis was so bad that I could barely use one arm. My GP had no answer, so I decided to seek another opinion.
My new GP immediately suspected an overactive thyroid - which proved to be right - and I was diagnosed with Graves' Disease. I was treated for about 12 months for this with antithyroid medication. How I soon felt was unbelievable - I wasn't depressed and my headaches had become infrequent and my arthritis gradually disappeared (never to return). Unfortunately, over the following months and years, my headaches and depression slowly returned. My 'good' GP had retired, and my new doctor said my thyroid hormones levels were normal. She recommended I still take lithium to control depression.
Over the next 6 years, my health gradually deteriorated, until I became almost completely debilitated with extreme fatigue, chronic headache, inability to concentrate or think, aching stiff muscles, sleepless nights, palpitations, and constant infections. My gums were so sore I could hardly bear to eat. These were just some of the things that were constantly there - covered by a thick blanket of depression. Eventually I was diagnosed as having Chronic Fatigue Syndrome. I was told it was nothing to do with my thyroid, as my thyroid hormone levels were 'normal'. However, they had only tested my TSH.
In 1998, my daughter was diagnosed as having Hashimoto's Thyroiditis. Her thyroid hormone levels weren't much different to my last test results. So she decided to do further research to help us both, and at the same time, found a doctor who specialised in thyroid disorders and CFS, and was willing to investigate further. So I had another thyroid function test, which included T4 and T3, and this time my test results showed that my thyroid gland was now underactive.
I can't explain the technical terms very well that I am writing about. But when having your thyroid tested, you need to have all three different levels tested - TSH, T4 and T3. My TSH and T4 were normal but my T3 was too low. Many doctors think that if the TSH level is O.K. then the others will be also. But this isn't always true. Here are my test results – 1998 – with the normal ranges in brackets: TSH 3.69 (0.30 - 5.00), T4 14 (11 - 23) T3 3.2 (3.5 - 6.7)
Even though my T3 was only slightly low, my doctor put me on a combination of T4 + T3 hormones, in a natural form, to bring my level of T3 into the acceptable range. I needed only a small dose of thyroid hormone, and to my amazement, my depression lifted, and my headaches almost disappeared. At the same time my other body systems started to function better. My lithium medication had to be substantially reduced, as I only required a small dose. I also discovered that lithium is known to hinder the conversion of T4 hormone into T3 hormone, but simply taking me off the Lithium did not resolve my problems. My thyroid hormones needed to be corrected to keep my migraines and depression at bay. Although my hormone levels are not completely stable, I can now read my body signs well, and so adjust my medication slightly when necessary.
Don't hesitate to query your doctor, even if you are only a little on the low side of a hormone, as I was. Having your hormone levels adjusted slightly could make a world of difference!
How do I feel now? Alive! Enjoying life as it's meant to be lived. And despite my age, I can still outrun my granddaughters (6 and 4).
- HMW 2001.
Partial Thyroidectomy and becoming Hypothyroid
Thyroid History June 1988 - 2002.
Just prior to the birth of my daughter, my thyroid gland became swollen on one side only. After her birth a fine needle biopsy was performed, which led to a Right Hemi Thyroidectomy. Pathology report – no thyroid cancer, and only T4 tested in hospital, result 17.8, range (10 - 25).
After surgery – weight increased soon after, and continued to increase steadily over the years. Even though I was unable to lose weight, I still felt ok until 1996.
In November1989 I had a miscarriage – 2nd pregnancy, and following this I was unable to conceive. I was eventually diagnosed with Infertility/Premature Ovarian failure. Experienced early menopause, with no treatment/alternatives offered.
BLOOD TESTS between 1996 - January 2002:
1997 – TSH tested – result 1.91 (0.40-4.70)
1998 – TSH tested – result 1.91 (0.40 – 4.70), and ft4 result 15.1 (10-25)
1999 - TSH tested – result 1.68 (0.40-4.70)
SYMPTOMS DURING THIS TIME:
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Had gained over 50 kg since surgery.
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Eyebrows became sparse, no longer needed to pluck them.
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Puffy and ‘ruddy’ face.
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Steel wool hair – always lots of hair on pillow in morning, but hair still very thick.
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Always feeling tired even first thing in the morning – hard to get motivated, as everything was “an effort”, even going out.
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Cold inside my body – difficulty trying to get warm and had to warm up slowly otherwise felt strange. This included heart palpitations. Would take hours to feel okay again if very cold inside.
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Body temperature lower than normal – 35.2 to 36.2. At lowest temperature - poorly co-ordinated, blurred vision and felt like it was difficult to speak clearly. Needed heater on in bedroom overnight except in summer. But never had “goose-bumps” or shivered.
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No longer felt the heat badly in summer – noticed that I did not perspire on hot days
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Not much appetite – never really felt hungry.
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Unable to lose weight – tried everything. Followed a very strict diet, wrote everything down and counted calories/fats, and walked a lot – did not lose one bit of weight.
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Felt fullness in neck, especially the side where part of thyroid had been removed. Found it difficult to swallow.
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Very sore bones and stiff joints. Gentle touch anywhere was painful.
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Painful to walk and to sit down, then standing again. Lying in bed was uncomfortable.
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Skin on legs/feet looked tanned – not from sunburn, in areas that did not get any exposure.
January 2002, began thyroid hormone therapy.
SYMPTOMS DURING THIS TIME:
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January – noticed eyebrows had thickened and I now need to pluck them again.
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January – periods of feeling warm started – mostly evenings.
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Feb – started to feel really good again even though I had heavy abnormal bleeding. Blood test revealed estrogen was too high.
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Early March – felt I had lost a little weight but not sure. Started to record weight – no change in diet – 90% of the time followed a low fat diet anyway.
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Increase in appetite – always hungry (unusual)
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Feeling of fullness in neck gone – easy to swallow again.
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April – no more soreness (flesh) when touched. No more aching bones.
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Hair became soft and less hair loss.
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Felt 20 years younger – full of energy and nothing was an effort.
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Clear head – very different to before.
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Puffy/ruddy face disappeared.
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Body felt warm – inside and out – temperature consistently up – 36.6-37.2 range.
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“Goosebumps”/shivering – doing this again when outside in cold air.
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Early March to May – slow and steady weight loss without diet changes – total 14 kgs.
Blood Test on 2nd May
TSH – 1.08 (0.50-4.00)
T4 – 21.8 (10.0-19.0)
T3 – 5.5 (3.5-6.5)
Feeling great!
- Faye