Advice gratefully appreciated!

[Cghkent]

Hi everyone,

I posted a few weeks ago about my ongoing battle to get to the root cause of my many symptoms and issues. Just over 2 years ago I was supremely fit, running, strength training, easily hiking 20+ miles every weekend without so much as an achy muscle.

Then May 2016 my feet started burning out of the blue, and everything has gone down hill since; pain in both hips, my back, the most irregular and painful periods when previously I was regular as clockwork, and such a loss of stamina its shocking. I've had every scan and test imaginable and so far they've found a herniated disc that nobody things is causing most of my pain, a dermoid ovarian cyst (that was removed last year), a second ovarian cyst that they're in the process of investigating, and raynauds syndrome (although I dispute this because it feels like its more than just my extremities that go cold easily, and bizarrely eating something sugary warms my hands up within about 10 minutes whereas a change in temperature doesn't!). So basically, despite having seen 2 foot specialists, a spine specialist and a rheumatologist, they've found nothing that could be causing all this.

Then this winter I've developed really significant cold intolerance and low blood pressure making me feel dizzy when I stand or climb stairs, and now my pigmentation is going haywire, when previously I've had a 'normal' complexion. I've developed dark spots in odd places - my lip, a patch on my hips, and both sides of my forehead, and yet I've got small hypopigmentation spots in odd places such as right under my ear, and across my breasts. It looks like I've been splashed with bleach! Personally I couldn't care less what it looks like, but its happened so suddenly, and at the same time as so many other symptoms, that I can't help be convinced its part of the puzzle somehow.

Surprise, surprise my GP hasn't a clue, and doesn't seem at all concerned about things like the pigmentation. But to me it screams a hormone issue. Despite 2 over-range TSH tests, and one earlier one that was high in range, my GP just wants to test it yet again in 3 months.

So guys, I'd be so grateful if you could cast you eye over my results below, and if anyone's get any pearls of wisdom I'd be very happy to hear them. The only thing I can think of doing next is a Medichecks thyroid antibodies test. But given the weird pigments, not to mention bottom of the range sodium and calcium tests, I'm pretty convinced I need to see a endo for some more hormone tests. Plus, given I was on naproxen and omeprazole for about 4 months until a couple of months ago , getting new baseline tests for vits and minerals to start targeted supplementation.

What would you all do in my shoes? ps thanks for reading such a long post!

25Th Oct 2017 NHS

Vit D3 61.2 nmol/L (>50.00)

5TH JAN 2018 NHS

TSH 4.243 mU/L (0.34 – 5.60)

Free T4 10.8 pmol/L (8.0 – 18.00)

FT3 4.4 pmol/L (3.8 – 6.00)

Serum Folate 15.1 ug/L (>4.0)

Serum vitamin B12 183 ng/L (>140)

Corrected serum calcium 2.18 mmol/L (2.15 – 2.60)

19th FEB 2018 Private hospital

TSH 5.25 mIU/L (0.27 – 4.20)

Free T4 18.4 pmol/L (12.0 – 22.0)

(No Ft3 done)

Serum sodium 137 mol/L (136 – 145)

Serum chloride 99 mmol/L (98 – 107)

Potassium 4.9 mmol/L (3.5 – 5.1)

Red cell count 3.89 x 10*12/L (3.95 – 5.15)

Lymphocytes 1.17 x 10*9/L (1.5 – 4.0)

plus loads of antibody tests - all 'normal'

APRIL 2018 Medichecks

Active B12 83.60 pmol/L (25.10 – 165.0)

30th May 2018 NHS

TSH 5.439 mU/L (0.57 – 3.60) * note change in range

FT4 10.2 pmol/L (7.90 – 14.0) * note change in range

FT3 4.6 pmol/L (3.1 – 6.80) * note change in range

Serum Ferritin 19 ug/L (11.00 – 307.00)

Serum iron 16 umol/L (2.00 – 32.00)

Serum TIBC 56 umol/L (28.00 – 54.00)

Iron transferrin sat 28.6% (22.00-36.00)

Medication

Amitryptaline for pain

[beh1]

Well, I can only comment on the thyroid results. But by the time my tsh was just over 5 I suffered from dizziness, spells of terrible exhaustion, freezing cold, anxiety etc and the doc had put the comment to retest in 3 months. I went in and asked for ( and got) a trial of levothyroxine and a lot of my symptoms improved. Worth a try at the doc? Just remember, when you start levo it takes a few months to find the right dose, so it won’t be an instant fix. Good luck.

[Bfarliegh]

has no one tested your cortisol? I think you need to have a 9am cortisol test.