I'm still not good. I get bursts of feeling good, (sometimes days, weeks, months even) then crash again. And the weight is piling on. I've put on 2 stone in 2 years and am only 5ft 2. Every time I try to cut down food or exercise I crash.
What I would like from readers of this site is to find out what to do next? Everything I've done so far has been due to recommendations and advice from members, I can't think how bad things would be if I hadn't posted on this site then 'told' my doctor what to do next. So now I'm 'stabilised' as far as the doctor is concerned, can you help me 'tell' her what to do next?
Here's my history. Sorry for the long story. I'm 49 at the moment. Non smoker. Hardly drink.
Throughout 2012. 5 foot 2, normal weight 9 and a half stone but I find the weight is piling on regardless of what I do. I had a bridesmaid's dress to wear and in the 4 months between buying it and the wedding, I put on a stone. That's despite doing Weight Watchers, going to Zumba, going to a Vibrafit machine 3 times a week and having those mud wrap things once a week that claim you lose inches. No matter what I did, it kept creeping on. Had the dress let out and wore it but could hardly breathe all day.
After the wedding (best friend's), I crashed, no energy, tearful, thought it was due to all the running around for the wedding. I went to the doc who put me on anti depressants, 20 mg a day of Fluoxetine so I've been on them since August 2012. Now I look back, it was probably an underactive thyroid at the time but was diagnosed as depression which I know due to this site that this happens a lot.
January 2013, I go on another diet to try and stop the weight creep. January, Feb and March 2013 I do Weightwatchers and Zumba exercise again as well as salsa classes. By the end of March I am next to useless energy wise, can hardly put one leg in front of the other, no energy at all, walking like an old lady.
The reason I got diagnosed as underactive thyroid however was really strange. For the last 5 years or so I've been bothered with severe foot pain now and again. No rhyme or reason for it, it's not brought on with cold weather or hot weather. It's not the bones, it's all been checked out by a pediatrist. They said it was likely to be 'systemic', to do with nerve endings or circulation, but because it was only now and again and not consistent, they couldn't do anything.
Anyway, when I got it I could hardly wear shoes, it was as if someone had hit the soles of my feet with a cane or as if I had sunburned the soles of my feet. They were very red when I had a flare up. By the end of March 2013 when I was at my lowest energy point, my feet flared up and instead of calming down after a couple of days, they stayed flared up for 3 weeks.Even worse, it started on my fingers and my earlobes. I googled and googled and eventually found a condition called erythromelalgia. This condition said it was normally as a result of something else wrong with the body and suggested that you ask your doctor to test for diabetes, thyroid and a few other things.
Of course, thyroid came back as abnormal. The ranges in all of these tests below are
TSH range (0.25 - 5) Free T4 (range 9-21) Total T3 (range 0.9-2.5)
(Note - I constantly asked for Total T4 and Free T3 but the lab refused to test them. They only tested Total T3 three times, wouldn't test the other times)
(Also note - the lab won't test for anything else at all, not B12 etc that I commonly see on this site like Ferritin, Calcium or Foliates. They just won't test them.).
April 2013 - TSH was 10.27. Free T4 was 10.1.
Doctor said she would leave me for 4 weeks to see what happened. I didn't know any better so a long, exhausting, tearful 4 weeks! And sore feet too, could only shuffle around.
May 2013 - TSH was 7.16. Free T4 was 11.1 Total T3 was 1.5
Doctor thought that was okay but I had already been on this site and told her I wanted TSH to be under 0.1 and Free T4 to be over 18. She therefore put me on 25 of Levothyroxene a day. Vitamin D deficiency as well so also put on Vit D 25 a day (but haven't been tested since - they say it's a once a year test!)
July 2013 - TSH was 5.72. Free T4 was 11.4. Total T3 was 1.3
Doctor thought that was okay but I pointed out that I still felt dreadful and that 25 was not enough. She increased me to 50 levo a day.
Aug 2013 - TSH was 2.76. Free T4 was 13.9. Total T3 was 1.4
Doctor thought that was good but I insisted on an increase so she increased me to 75 levo a day.
HOWEVER, I TOOK MATTERS INTO MY OWN HANDS AND INCREASED TO 100 A DAY ON 10TH September. Within 3 weeks, I felt great.
October 2013 - I did a private blood test with Blue Horizon for B12. Active B12 result was 156 (reference 25.1 - 165).
Oct 2013 - TSH was 0.17. Free T4 was 17. Wouldn't test Total T3.
I admitted to increasing my own dose to 100 levo a day and reported that I felt really good.Feet problems gone.
Dec 2013 - TSH was 0.16. Free T4 was 15.5. Wouldn't test Total T3.
Still feeling really good and back to normal. Feet problems gone.
7th October 2013 - 7th January 2013 - FELT GREAT, TOTALLY NORMAL.
7th January ANOTHER CRASH. Why? I was dieting before, during and after Christmas to try and lose weight (now 12 stone).
17th January 2014 - TSH was 0.24. Free T4 was 16.5. Wouldn't test Total T3.
Doctor thinks this is okay but I'm not good at all. What do I do now?
THE END - ANY IDEAS WHY I FEEL SO BAD? And why I cannot lose weight, any time I try I crash?
Do I have a conversion problem? Do I need some T3? Doubt if my GP would agree with this.
Is the only option open to me to insist my doctor refers me to a specialist? I've got Louise's list of specialists, there's not much going on in Glasgow. Will my GP (Glasgow ) refer me to another area (Edinburgh) where it looks like there's a better service?
I'm sorry this is so long and if you have read right to the bottom , I thank you with all my heart.
Hoping there is some advice out there.