Need some help to find an endo in Essex and a few other questions....

[Jules_Essex]

I'm new to the forum and could really do with some help and advice I was diagnosed as hypothyroid when I was in my early 20s and I'm now 38 so have been on thyroxine for about 15 years now.

I've always felt that my symptoms have never really improved and have never questioned the doctors at all when they've told me that all my blood results have been in the 'normal range' for the last 15 years and any ongoing symptoms I had were nothing to do with my thyroid. Things have worsened over the last couple of years and I've been diagnosed with fibromyalgia as well as other autoimmune problems such as lichen planus and low B12 levels (for which I'm having injections).

Originally I was on 150mg of thyroxine and that was cut back to 125mg about 4 years ago due to labs being at the 'high' end of normal and the doctor being cautious.

I've just been reading the 'Stop the Thyroid Madness' book and it just feels like such a revelation for me as I can relate to so much of it and I'm sure I also have undiagnosed adrenal problems too and I'm now wondering if a T4 only treatment is perhaps not working for me? I literally found myself in tears reading parts of the book as there were so many things I could related to and I kept thinking to myself 'why hasn't anyone ever told me this before'!! I've recently had my yearly thyroid blood test and have been told all is 'normal'. I think my T4 levels were 14. something (normal range was up to 15) and my TSH was 1.2 (normal range was 0.2-5.0). From looking back at past blood tests it looks like my T3 levels have never actually been tested which I'm slightly astonished at!

At the moment I'm feeling quite upset with myself that I've always just taken the GPs word that levels are normal so the fact that I've still felt really ill has been irrelevant and I didn't think it was related to my thyroid. It seems there's a big link between thyroid and fibro and I feel like I need to investigate things further. I also have terrible issues with rhinitis and have also now read that this can be linked to the thyroid too which I never knew about. I've tried so many prescription antihistimines and nasal sprays and nothing relieves the allergies.

I now want to try and get referred privately to an endocrinologist but I want to make sure I find a good one and am not quite sure how to go about that so wondered if someone could perhaps point me in the right direction? I'm based in Essex and want to make sure I seem someone who is understanding and doesn't just dismiss everything as being fine because my TSH is okay on thyroxine.

It also seems that in the USA lots of people do far better on dessicated thyroid but I'm not sure that's even a treatment option in the UK and wondered if anyone on the forum was actually taking it?

I've also now realised that no doctor has ever told me why I'm hypothyroid - I'm assuming it's an autoimmune problem but I've never been 'told' as such. As I'm now having other autoimmune issues cropping up I feel there must be a 'link' but at the moment everything is being treated separately.

Thanks in advance for any help and advice

[puncturedbicycle]

Welcome. You've probably read this here already but it's best if you get a printout of your blood test results so you know where you are. There are lots of people here on ndt but I think it will be difficult to get a script from a conventional endo.

It seems like with results like yours, you might benefit from a t3 test to see if you're converting your levo to t3 or if it's just building up. It may be that levo is not for you and that a little t3 might help.

[Jules_Essex]

Thanks for the reply I do have print outs of all my blood test results and apart from the T4/TSH one that I've posted above I also have these which are older.......

These were done by the rheumatologist in January 2013 so they're fairly old but I've nothing more recent - he emailed me the results which are as follows:

Bloods:

ANA negative, complement levels within normal limits, anti- thyroid antibodies negative, gastric parietal cell Abs negative

FBC- normal. Hb= 13.9, normal WCC at 7.8 with normal lymphocyte component

Immunoglobulins- IgA, M and G within normal limits

Platelets 380

I also had some very thorough bloods done by my GP back in December 2012 (which was roughly when the fibro was diagnosed) and I have all those print outs and there's tonnes of stuff there but the main things that look relevant are:

Plasma folate level 13ng/mL (4.0-20.0)

Ferritin: Serum ferritin level (XE24r) 81 ug/L (11.0-307.0)

B12: 194 (180-914)

Plasma free T4 13.4 (6.3-14)

Plasma TSH level 0.31 (0.3-5.6)

There's also another page for renal profile which says:

Plasma sodium level 139 (133-146)

Plasma potassium level 5.0 (3.5-5.3)

Plasma creatinine level 60 (39.0-91.0)

Plasma urea level 4.0 (2.5-7.8)

Can't see Vit D results anywhere but I know it was below normal range as the GP has put me on prescription Vit D but I definitely have never had T3 checked from the paperwork.

As my B12 was so low I've been on injections for that since September 2013.

I'm not sure what any of that means to be honest and I know it's a blood test that is about 18 months old but it does look as though quite a few things have been checked I think?

[Hidden]

Hi there Jules.........I fully understand your dilemma.It's a tough journey to get the right answers for a lot of us.

However,I don't know where about in Essex your are,but if you like to send me a private message I can inform you of the Endo who was recommended to me by another member in Essex.I have seen him 3 times and have recently had FT3 testing and medication adjustment as a result.

[Jules_Essex]

Thanks marfit - I *think* I've sent you a message if I've done it right!