New endo appointment and new blood results - help appreciated :)

[Jules_Essex]

Quick back story is that I've been hypo since age 21 (now 38) have TPO antibodies so I'm assuming hashi's. Saw an endo for the first time in April who agreed to me trialing 10mcg of T3 with my 125mcg of levo which has made no difference. That endo wouldn't prescribe a higher dose of T3 as I had surpressed TSH so I saw an endo in London last week and also had an ACTH stimuluation test as I took along my saliva results from Genova which suggested low afternoon/evening cortisol.

He ran the following bloods and he's emailed me the results today but I'm not sure what they all mean so if anyone can help me interpret here they are.........

the results of the blood test undertaken are now back, which shows:

Normal renal function

Normal Short Synacthen test results (cortisol of 262nmol/L at baseline with peak of 505nmol/l – normal peak >450 and incremental rise >200)

Free T4 / Thyroxine of 16.3pmol/l (normal 9-23), free T3 5.6pmol/l (normal 2.5-5.7), TSH 0.02mIU/L (normal 0.3-4.2)

Prolactin 161mU/L (normal 100-500), LH 4.9IU/.L, FSH 5.6IU/L, Oestradiol 92pmol/l

Vitamin D 84.8nmol/l (normal 70-150)

Haemoglobin 144g/L, MCV 83.4fL, White count 8.6x109/L, Platelets 416x109/L

Not everything on there has ranges but I'd really appreciate any comments anyone has to help me interpret them.

The basic message seems to be that nothing has shown up on the adrenal test and he's suggesting as the next move that I have an an overnight dexamethasone suppression test to check for excess cortisol as I do also have possible symtoms of cushings - moon face, weight gain around the middle, purple marks on stomach. He's asking my GP to do the dexamethasone test so they'll probably say no and I'll have to trek back to London for it!

Anyway what I did like was that he said that 1 in 10 people don't feel well again on Levo (he's the first person that has ever admitted that!!!) and of those people you can improve things by getting a balance of synthetic T3/T4 or switching to NDT (again the first time someone has ever said that to me!!)

The plan is to increase the T3 gradually and decrease the T4 and keep retesting to see how I feel and if there's still no improvement then I can make the choice to switch to NDT and he'll monitor me. He also thinks my Vit D is still too low given that I'm having 1600iu on prescription daily.

Overall I felt it was a good appointment as I've never had anyone admit to me before that levo doesn't work for everyone so that felt like quite a milestone in itself!!!!!!!

[shaws Administrator]

Please pass the name to [e-mail] if you didn't get it from her.

It is so nice to hear a positive consultation and the fact he/she is willing to let you try alternatives to levo.

Best wishes.

[Clutter]

Sounds very positive, Jules. It's probably easier to be honest about the limitations of Levothyroxine if you're working outside of the NHS

Your FT3 is already at the top of the range so it will be interesting to see whether you feel better on more T3 and less T4.

I think your vitD is a bit low too. I'd supplement your prescription with another 1-2,000iu vitD3 to build up your levels over the winter.

Sorry, I can't interpret cortisol or your other results.

[edysia2]

It doesn't look like you have Adrenal insufficiency as your adrenals responded well to ACTH stimulation.

Thyroid looks good to me, I wish these were my results despite medications I can't get my levels right.

[edysia2]

I know you mentioned Cushing features, but still if you have low cortisol on your saliva test then why does he suspect Cushing's. Cushing's is an exces cortisol.

Is it a good Endo?

I have seen a few in London and I gave up, nobody helped me

[Jules_Essex]

Although the results look 'good' edysia2 I feel absolutely horrendous so I feel that, for me at least, the results on a piece of paper are meaningless when you feel so dreadful

I brought up the cushings - I know it's excess cortisol but I do have many of the symptoms - round moon face, weight gain around the middle and purple striae around my lower abdomen. I guess he's checking as I brought it up.

[greygoose in reply to Jules_Essex]

Moon face and weight gain round the middle can also be low cortisol. Don't know about the purple striae, though.

Have you had - or can you get - your B12, magnesium and zinc tested? If any of these are low - as they often are with Hashi's - they can cause pretty horrible symptoms.

[Jules_Essex]

Thanks for the reply - sorry for the slow response. I know I have B12 deficiency and have injections for that via my GP fortnightly at the moment. In my latest bloods my B12 was in excess of 2000 (range was 180-914). In April I had a few things tested and Magnesium was 0.85 (range 0.7-1.0) but from looking through all my other blood work I haven't had zinc tested before.