Firstly THANK YOU ALL for replying !!
It's such a minefield isn't it
A few things in response - I have made an appointment to see Dr Kevin Shotliff - he was on one of the Thyroid suggested Endo lists I've found online. Had a couple of helpful reviews - however, should you be able to recommend any body else please do PM me asap as I am keen to get this right if possible - first time and try to save the pennies and anymore anxiety over getting misdiagnosed.
I am staggered to read that I may not have ever been Hyper or overmedicated when they took my meds down from 100 - 75mg. The NHS Endo took that decision based on my TSH test GAH!!!
However, I was incredibly anxious, high heart rate, irritable, bloated, high cholesterol, and my weight gain was impossible to lose - and the thing of note here - is that as soon as they lowered the levothyroxine - I lost two stone, lost the muscle and joint pains, lost the major anxiety and heart palpitations - and for the first time started sleeping properly after months of bad interrupted sleep and my cholesterol returned to 5.5.
At the moment - I have not gained weight - I continued to lose weight over the summer but that could have been the bereavement and stress I was experiencing. However, with the hair loss, coldness, tiredness, puffy face etc etc it does look Hypo doesn't it? But no weight gain??
I have here the private test results from March 2015 just before they reduced my dosage:
Total T4 124 ( 59-154 )
TSH 0.08 ( 0.27-4.2 )
Free Thyroxine 19.4 (12.0 - 22 )
Free T3 4.9 ( 3.1 - 6.8 )
Thyroglobulin Antibody 413.7 ( 0 - 115 )
Thyroid Peroxidase Antibodies 9.1 ( 0 - 34 )
I also had high cholesterol 6.8 (recommended 3-5), B12 was sub optimal 140, Vit D was sub optimal 40 (Optimal 75 up), Ferritin was very low at 9 (optimal is 80), and I had a vitamin and mineral blood screen done which showed a zinc deficiency 9 (ranges between 11.5-20), omega 3 deficiency 44 (44-100).
I also had high red cell magnesium values, elevated red cell superoxide dismutase activity suggesting a response to oxidative stress in my body and "above average" C Reative Protein which suggested an on going inflammatory process.
I have always tested a "weak positive" IG/ ANA test - I have often put this down to general allergies to dust, pets, hayfever, pollution, mild asthma and what not but wondering if this is auto immune and Hashis - I've been paranoid about autoimmune for years (I'm 35) as my grandmother had chronic rheumatoid arthritus.
I have been ill on and off the last 6 years. My ferritin has rarely gone above 9-21 no matter how hard I try to eat better or take the ferrous / iron supplements.
I was crippled with rickets - osteomalacia - with a Vitamin D level of 8 - I lost weight dropped to 7 stone and lost all my muscle - that triggered other things too. B12 was very very low too.
Now, you see - on hindsight - I am wondering if the real cause of all this has been thyroid all along?
I've racked my brain wondering if it was because I was vegetarian/vegan since birth, or not getting enough sun etc !! It has been suggested to me I must have been seriously deficient for a long time to have gotten so ill with the osteomalacia - I initially presumed ten years of eating disorder and malnutrition triggered the osteomalacia and other deficiencies but now could it have been the thyroid!! I started to struggle with yo yo weight gain and exhaustion, weak muscles etc from the age of 14 and it's been one thing after another since then!
Apologies to ramble on - it's good to get it out to be honest - thank you !! And I know I am not the only one - thank you for responding it has really helped !
I am definitely losing with the NHS so I only get my TSH tested with my GP and get my prescription of Levo from them.
I have been seeing a nutritionist who has helped me with my diet - vitamin deficiencies - and yes FLOWER - thank you so much you are right - I have checked the thyroid UK site for their suggested supplements and important vitamins list.
I was on a schedule of vitamins and supplements to support my thyroid, adrenals and deficiencies but totally fell off that wagon in June post bereavement. Also I am not eating enough and not regularly so that won't help either.
HEA72 - YES PLEASE!!! I would definitely be interested in the Functional Medicine approach please could you DM me? I am based in London.
I have wondered whether acupuncture and other methods may compliment the medication.
RE PRIVATE ENDO - I have two recommended lists one from Thyroid UK and another from another Thyroid Charity online - but I still find it hard to know who to choose. If anybody could recommend I would be really grateful - I will also post a request on here for recommended Endos - nobody responded to my last post two months ago!
Thank you so much Flower for the fab advice on taking my meds I did not realise it had to be an hour before food in the morning nor timed specifically before taking vitamins etc !! Thank you !
Thank you Grey Goose for advising about the NDT and the Iodine - I have read and read and read so much online over the past two years and I am still finding out things - but you are all so right it is trial and error - and all your advice has been very helpful.
I have cut out all gluten - as I am intolerant and because of the effects on thyroid, I do not eat dairy really other than the odd bit of Feta (!) - I have almost cut out sugar entirely, and cut out caffeine. (it's so dull) I am vegetarian so it takes effort to eat well.
Am I really bonkers to think that this has all been just one thyroid wobble and that I could come off the thyroxine and my thyroid might just recover and heal itself once I've nailed the B12, Vit D, Ferritin, zinc, omega 3 deficiencies?
I would be most intrigued to see your thoughts if any on the extra information here - I get my next set of blood tests in next week so will post again - and will try to get a response for finding a recommended endo on here!
Thank you so much - it's just so tough