From Graves to HYPER to RAI to HYPO and now Levo

I'm a 32 year old male who's been battling with numerous lifelong conditions (as most of us), so I'm reluctant and tentative to select a starting point. It seems appropriate to share my story and background as the medication and condition will be part of my daily life going forward. (I'll try and be as accurate as possible)

Since I was a child I suffered from asthma and hyperhidrosis (excessive sweating). I mostly ignored the asthma but the hyperhidrosis turned out to be a different creature up until present day. Teenage years was fantastic so no complaints on the social sphere. I am fortunate to fall in the athletic category of the physical sphere which in turn fueled my desire to be as healthy and fit/strong as possible. My realization of the importance of overall health came around age 22. The more I got into this new lifestyle of exercising, eating healthy and reading everything I could about nutrition, the more sensitive I became about my own body. I started to pick up on unusual symptoms that I've had over the years. This lead me to experiment with foods and supplements which mostly improved my life and conditioning. Long story short I decided to cut out gluten because of extreme constipation, scalp issues and seasonal allergies. To my amazement ALL of these symptoms disappeared as well as my life long battle with asthma! As a lover of all breads this was devistating and very difficult to adjust to but after numerous relapses the symptoms would start crawling back. (Asthma and allergies would appear after an hour) Eventually after trial and error my gut is healed.

Years passed but I still didn't ‘normal’. What complicated or confused things was that I would always get compliments about my appearance and health from people. Secretively I knew all it not right in my world. My red hands were the obvious first sign. They would be pulsing bright red 364 days of the year and sweating. This made daily life very difficult. Because I was so indoctrinated by the health practitioners industry, I experimented with supplements like spirulina, L-Tyrosine and Ashwagandha. (This combination I now know was deadly for a Graves disease patient). I believe this ‘healthy’ cocktail was the kickoff of my future thyroid storm.

Work was stressful and the deadlines were never-ending. My extreme anxiety, nervousness and heat intolerance controlled me. I couldn’t focus. Pretty much nothing I did seemed to help. Couple that with my hyperhidrosis and you can only imagine the internal battle I had. What's happening to me? This is not normal? Why are my hands so red? Why am I sweating when its ice cold? Why am I so nervous and anxious? I am a very driven and stubborn guy so I just kept pushing through hoping things will change when I find the right diet. Years passed.

Then.... after periods of lows (mostly directed at Graves), quitting my job and starting my own business I realized the bleakness of my current situation. (When you are hyper molehills become mountains) I needed help but was still in denial about how it should be fixed. Long story short I hit rock bottom Dec 2015 when I started losing weight. I was already ‘skinny’:188m and 79kg. The kilos dropped and dropped to 73kg, my body became weak, my face became smaller and dark rings under my eyes, I had a resting pulse of 120bpm in the mornings. I was deeply depressed, anxious, moody, irritable, always hot and sweating, had an appetite like a rugby player, urinated 4-5 times every night, got 5h of sleep, acne breakout on chest, back and forehead; constant ear infections, sinus problems, diarrhea, extreme muscle loss, extreme fatigue and muscle weakness, hand tremors, night sweats; knee failure and complete exhaustion at midday. Psychologically I would get into constant arguments with my then girlfriend and family members about everything in life. I was a complete mess. Add the stress of a new career and I was losing my mind. I prayed.

Then God said yes.

I was financially depleted partly because of my symptoms controlling my life and after many battles I got hold of a doctor who was willing to help upfront. I walked into his office and I was shaking and having extreme cold sweats and anxiety. I was so worn out at that point form my overactive thyroid that I couldn’t properly speak or explain what I’ve been experiencing for the past 6 months. The doc had one look at me and said: “You are clearly experiencing extreme hyperthyroidism and will have to undergo RAI treatment ASAP”. Because of my investigative nature and reading up on RAI I was silently hoping he would say there is a natural way but he wouldn’t have any of it. He calmly explained that no amount of broccoli or selenium will turn me into Poppeye! I underwent numerous tests. Interestingly my blood tests results showed very high free testosterone levels and perfect VitB,D3,Calcium,Liver function, Cholesterol etc. So my diet did have an effect but the thyroid storm was too powerful.

I underwent the RAI treatment the following week. Then I waited. I went on with my life and some after two weeks still no improvement. Week 3 my heart rate was mid 90ies. Weight was still low but I was improving slowly and just round about a month I started to experience some weight gain and moments of real relief. But then it’s as if the symptoms would come back just when I thought I'm getting better. After a month and a half of a more stable heart rate and some weight gain I broke out with hives all over my body. But, again, the Lord gave me a fighting spirit and then one day… I jumped on the scale and it said 78kg! Next day 79; next day 80; next day 81; 82. I didn't feel my heart pounding in my neck anymore! I was less irritable and anxious! Heart rate was normal! Energy is back! "Am I cured?!"

Short answer: YES. In fact, for the next 3 weeks my body completely transformed itself. I felt so good (normal) that I took silent moments during the day just to thank God for the amazing experience of normalcy. Indescribable really. I had all my energy, focus, drive, motivation and personality back. I gained pure muscle, face and hives cleared up, mood stabilized, work improved and I finished a trail run without any pain in my knees or joints. I was a new man with a current weight of = 85kg. I still believe my testosterone is high hence the easy conversion of food to muscle and widening of my jawline muscles. To explain the joys of being able to work a full day with stable energy and not have any anxiety or nervousness and hot flushes is impossible. I have been struggling with Graves for more than 10 years.

I feel humbled by the experience.

Up until last week I felt the reversal of symptoms taking effect. Stiffness of muscles and joints, coldness, low drive and energy, brain fog, loss of taste, poor sleep, puffy face, muscle weakness and sluggishness/depressive thoughts. It’s as if I prefer isolation which is unlike me. Heart rate is low at 48bpm in the morning and when training still hovering around 115-120. It’s difficult to push myself to get out of bed and motivate to work. I’m still looking physically good and but I’m too tired too often.

So I went to the doc yesterday; got results back this morning and I’m officially hypothyroid. THS 45 and T4 was outside normal range. Got my prescription of 100ug Levo and will start taking it from tomorrow morning at 6am. After 6 weeks I’ll go for the follow up tests.

RAI was my only option for my Graves and I would do it again.

I’m not ecstatic about taking a hormone pill for the rest of my life but I’m adamant to turn this into a success story. The taste of normalcy felt too good and now know my goals and dreams are within reach if normal levels are achieved. I’m just dumbstruck of the importance that the thyroid has on our lives. I have tasted both ends and hyperthyroidism is in another league to Hypo. No comparison in my mind. Interestingly my red palms have improved greatly and I feel that cutting down on the espressos will improve the situation even more, but that’s another battle for another day.

Anyway, I've unloaded on this forum for the first time in my short life so excuse the essay. My goal is to share my story and hopefully motivate someone to keep on pushing. I’ll be posting when I notice any interesting changes.

4 Replies

  • WOW Akascotman, you really have been through the mill and back many times. Thank you for taking the time to share such an horrendous journey with us. It is sure to help others.

    I was diagnosed hyperactive thyroid condition in April 2011 and have had three periods of

    remission from all the horrible symptoms this gives me. I was told to have RAI or surgery

    after three months and although I questioned that I would then have the under active

    thyroid to cope with, the Registrar in clinic said "take a tablet each morning to sort this".

    I have refused both RAI and surgery after reading of so many others experiences on here.

    At present my overactive thyroid has flared up again but my Carbimazole has been increased

    and I am awaiting results of the blood test I had taken last week. I feel a little better already.

    Under or over active thyroid conditions just aren't easy to live with, but your posting has shown that a strong faith, healthy eating, a sympathetic GP and a positive outlook can help such a lot in the roller coaster ride that the thyroid condition presents to us all.

    Very many thanks for sharing your experiences and I wish you all the best for the days ahead

  • Welcome to the forum, Akascotman.

    For maximum absorption Levothyroxine should be taken with water 1 hour before or 2 hours after food and drink, 2 hours away from other medication and supplements, and 4 hours away from calcium, iron, vitamin D supplements and oestrogen.

    It takes 7-10 days for Levothyroxine to be absorbed before it starts working and it will take up to six weeks to feel the full impact of the dose.

    You should have a follow up thyroid test 6-8 weeks after starting Levothyroxine. Arrange an early morning and fasting (water only) blood draw when TSH is highest, and take Levothyroxine after your blood draw.

    Most people will find symptoms resolve after their TSH drops to around 1.0 with FT4 in the upper range but symptoms can lag a couple of months behind good biochemistry.

  • Thanks Clutter - useful info for sure!

    If per se my levels are normal after 6-8 weeks, do I keep on using 100ug or does one revert to a lower maintenance dosage so the thyroid doesn't become over-stimulated or lazy? I do hope that with a stable diet a controlled regime will be achievable.

  • Akascotman,

    RAI will have destroyed your thyroid gland. You will require 100mcg, perhaps more, daily for the rest of your life.

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