My Hypothyroid Diary has been published! This covers my diagnosis and the start of my recovery, the effects of flu, flare-ups and an update on management of the condition.
I've posted a few photos.
The photo I took in August 2012 is brutally honest. Please don't criticise me for not accepting my body shape - this isn't about 'acceptance' and body image. As a 'hidden' illness, this is the visual manifestation of this chronic condition when untreated - over 1/3 increase in body weight in 18 months and a BMI which is challenging.
Be prepared - the diary is long!
Have a hearty breakfast and plan a coffee break before you start!
Thank you Liz. I initially wrote it to encourage myself and so that I didn't give up. I hope it will encourage others that it can be a battle with a positive outcome. x
Liza. thank you for your story which I've just read and wept through. It is just dreadful, though you have come through, thank goodness, and are aware of the path ahead which you can tread confidently now with the assurance of knowledge.
Thankyou for sharing your story. I love reading success stories as I am 6 months in after thyroidectomy and am still struggling awfully. Nice to know there is hope yet xxx
I was diagnosed about the same time as you and I can relate to so much in your diary. I still wish I could feel better than I do. My GP's response when I mentioned that I was really struggling to lose weight was that I was obviously eating too much - not that helpful.
Like you I struggled with bathing and now use only a shower.
If only when my GP diagnosed plantar fascitis in 2008, he had thought to check my thyroid. Perhaps things would be very different.
I'm so sorry you're still suffering. Your GP needs re-training!
I've keep evidence; tracking symptoms, food diary, medication levels so I now know when I need an increase.
Are you not having enough medication? Or is there a vitamin difficiency or conversion problem, or other issue?
It is the job of your GP to help you manage your condition, not offload responsibility with excuses. With hormone issues it is not about 'obviously eating too much'.
With me, if I'm undermedicated I feel crap and can't lose weight. A small increase has made a huge difference. This past month a difference of 12mcg extra levothyroxine per day has taken me from ill to well.
Don't let your GP call the shots - get evidence and challenge him!
Thank you for writing this, it could have been me writing some of this. I have only just been diagnosed but have had symptoms for years. 3 years ago I was "borderline" but the doctor said this was nothing so I stupidly trusted the doctor and just ignored it - even 3 years on when I felt 20 years older, so fat and depressed, I still didn't think it was thyroid as I went to the doctor and he said it was menopause! Despite the computer screen telling him I was borderline 3 years earlier! I'm no doctor but shouldn't it have been obvious to re test me??? Lol. Anyway, re tested and TSH was 68.6, no wonder I felt so bad! So now on the start of my journey as a "diagnosed" hypothyroid and taking medication. I'm only 6 weeks in so it's invaluable to me to read truthful stories like yours. I had a "fat" day and as shallow as it sounds, it made me so miserable. The sun is out, I just wish I could strip off, show some flesh and not feel so bloody self conscious! I'm not ready to exercise yet, too exhausted, but I have plans to turn the spare room into a gym. It was really good to read your journey and to understand that exercising does play a huge part in this. I'm so glad you are healthier in yourself and I hope you manage to lose some weight, you really deserve to. Although, I think you look great in your last photo and I truly mean that xx
Thank you for leaving a comment Debsy. It's good to get feedback!
I'm sorry you have suffered too - I've learnt to double check everything now and not leave anything up to the GP.
I have actually started to lose a little weight - I must be at optimal now. I don't mind being a chunkier me - as long as I'm well and healthy but my BMI is too high.
Take exercise really slowly when you're ready to start. Most of what I do is mobility and gentle walking.
I drew some parallels from what you've written so wanted to share my experience RE: muscle cramps. I found I got them occasionally, especially in my thighs and calves, before I was diagnosed Hashis. I was Swimming a mile 3x per week and was struggling with fatigue.
Once diagnosed and started on Levo, I found my muscle cramps got much worse as did my fatigue. At that point I found myself trying to ramp up speed in the Pool and suddenly getting a massive cramp instead of higher leg output... which saw me nearly drowning a couple of times. Lucky I can pretty much Swim with one limb.
I also had an unexplained episode of back cramp in my upper back beside my shoulder blade which saw me floored in my 3yr old Son's room whilst holding my 6-month old daughter. I had to ask him to look after her 'til my Wife arrived home and found me. Every time I tried to get up, I had the most excruciating pain in my back where it was cramping and spasming. I was Ambulance'd to A&E at the local hospital, where I was then doped up on strong painkillers for the weekend (would be a Friday early evening it happened huh!) until the cramping / spasming / pain subsided.
I was told by my Endo that the cramping had nothing to do with my Levo but after bloods which showed there was room for improvement in his mind, I was allowed to try T3 combo treatment - trading some 42.5 mcg of my then 175 mcg T4 for 10 mcg T3. Literally the next day, no more cramps in the Pool and they've not returned since... in my mind cramping when Hypothyroid should be treated with T3 as a result.
Weight wise I've been up and down like a yoyo - same as you in that I put on for years despite frequent exercise and reasonable diet. When I started T3, I lost over half a stone and felt pretty well. Then came another blood test. The very low TSH spooked my Endo, who asked me to reduce my T4 by 12.5 mcg to 125 mcg with the 10 mcg T3. In the few weeks since, I've put that half a stone back on and generally feel worse and more lethargic.
Ideally I'd go on more T3 and reduce the T4 down further - for me T3 is the much better quality treatment option in terms of wellbeing and metabolism. Don't know about NDT as haven't tried that, but would like to given the high T3 content in it.
The cramps I now get are fairly minor and leave within a few minutes - nothing as bad as yours. I have been thinking about asking for some T3, and would love to have a trial... although I suspect that since in most other respects, as I've responded so well to T4 only, it's unlikely that my GPs would prescribe it.
I also want to learn a bit more about how to take it, as I know T3 doesn't suit everyone either.
I'm also interested in the NDT. We really should be able to trial these without the difficulties asking for these treatments entails. As if life as a 'roidy isn't enough of a challenge already!
Best wishes
Liza
Hi Birdie
Yes, I just wish GPs would change the calories in-calories out record. It's really not that simple.
Past 40 years I have not eaten meat and I rarely eat anything with added sugar.
I've eaten wholegrain everything although in June, gave up wheat as I realised I now had IBS. I eat potatoes, brown rice, oats. I still eat dairy as I've not noticed any problems with it. I read that something in fruit helps convert T3 to T4 and I always have fruit instead of sweets or puddings. I eat quorn and reluctantly, I started eating fish twice a week about four years ago for the amino acids and vitamins. I have tea several times through the day, and an occasional glass of wine - but not every day - maybe two every few weeks.
I'm still struggling with what to eat but this is a typical day.
7am; Levo with warm water
9am; porridge oats with small handful of dried fruit and cashews and big spoonful of plain greek yogurt.
OR scrambled egg, fresh tomato and mushrooms. I sometimes add sun dried tomatoes.
1pm; jacket potato, tuna fish filling and salad. Orange.
OR homemade vegetable soup - whatever is around, and always with celery!
6pm; banana
9pm; couple of rice cakes, thin slices mature cheese on top with salad.
Apple.
I don't know the dulse flakes you mention and I occasionally have a little chopped, fried samphire with my breakfast if I can get hold of it in my landlocked location!
I feel very healthy, but still no weight loss. I refuse to diet - I'm not eating enough to diet!
Liza
I will look out for dulse flakes!
I empathise with your experience. It's frightening how destructive to our life this condition can be and being unable to get through the day is just the tip of the iceberg. I did the same with diet too - started eating sugar when I had never done so before, and milky coffee - I think the body craves them in a confused attempt to create energy, as they did in the past. Of course they couldn't, because we need a healthy metabolism to create energy... so the weight increases...
It's taken me a long time to 'trust' my body again! It sounds as if you, like me are now in a much better place so can look forward to a brighter future.
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