Dr C testing and results- back to square one HE... - Thyroid UK

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Dr C testing and results- back to square one HELP advise FEEDBACK anyone

sandrab1969 profile image
13 Replies

I had high hopes and was looking for answers and treatment quickly after nearly 4 yrs of getting nowhere and getting worse week by week.

SYMPTOMS- moonface, mega tummy weight gain(like I am 9mnths!)- suicidal feelings one minute, high the next, legs and feet do not work, dry eyes and dry mouth and throat, eyes feel strange- that is all I can explain it as, spots- that do not heal, hair on my face, dark patches of skin pigmentation on my neck. I had a mega sore throat at Easter- the yellow spots are still on my throat- with no pain. Normal Thyroid results via the GP but indicated on the high side of normal ft3 and high side of ft4. Adrenal saliva was MEGA MEGA high at night 22.3!- suggesting Cushings and pointed out my symptoms fell in place with this. Adrenal saliva was normal in the day result. Dr C referred me back to my GP for 24hr urine and 9am cortisol- as in 2010 it was 255, 6mnths later 305 and 2011 was 425- so he highlighted that it was increasing....but guess what- this time... lower and normal 343! WHAT is going on?- tearing my hair out here.

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sandrab1969
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greygoose profile image
greygoose

Well, cortisol does that. As you descend into adrenal fatigue, the adrenals start working harder to make up for it and levels of cortisol go high for a while and then start going down again until they are too low and you are struggling.

If you have spots and hair on your face, it might be a good idea to have your testosterone tested. Do you have the exact figures for your thyroid tests? If not, it would be a good idea to ask for a print-out of all your test results so that you can see exactly where you are.

Hugs, Grey

sandrab1969 profile image
sandrab1969

Thanks Grey

I have a full print out of all my results from 2004!

FT4 21.1 (12-22) FT3 5.1 (3.1-6.8)

Testosterone 1.2 (0.5-3.0)

ps- re women hormones- confirmed post menopause age 44! (they just stopped before once I was pregnant with my daughter age 4) and never returned.

LH 28.6 FSH 47.8 OEST 18

sandrab1969 profile image
sandrab1969

serum TSH 0.48 (0.27-4.2)

greygoose profile image
greygoose in reply to sandrab1969

Well, I wouldn't say that your frees were high! In fact, the FT3 could be slightly higher. But that was a long time ago. Don't you have anything more recent? Things change, you know. lol And given your recent adrenal tests, I would think that fresh thyroid tests would be in order.

sandrab1969 profile image
sandrab1969 in reply to greygoose

SORRY- the results were last week- I meant I have all my resutls dating back to 2004!

greygoose profile image
greygoose in reply to sandrab1969

Ah, ok. lol Well, same remark as before : no sign of over-medication, adrenals going in to 'overdrive' as Janeb says. Next stop adrenal fatigue, and then your body won't be able to use the thyroid hormones it has. So do I take it that you haven't been diagnoses yet? Sorry if I've missed that bit but I'm totally over-wraught today! lol

I agree with Grey. You need to have up to date thyroid and adrenal tests. If the thyroid is struggling the adrenals will go into overdrive to "thrash" (as Dr. P. puts it) the thyroid into action.

Try to get your doctor to do these tests for you. You may be deficient in more than thyroid and/or adrenal hormones.

thyroiduk.org.uk/tuk/diagno...

The most useful adrenal test to do a saliva test from Genova Diagnostics. thyroiduk.org.uk/tuk/testin...

Jane x

sandrab1969 profile image
sandrab1969 in reply to

Hi Jane- thank you for the reply- these were results from the other week also the adrenal saliva was the other week too. My night time saliva cortisol was 22.3!! over 4times higher than normal.

in reply to sandrab1969

Oh I see. Sorry, I'm not clear on whether you are on any thyroid replacement. If you are on Thyroxine it may help to change to Armour/Erfa or Nature Throid, OR add some T3 or have T3 only. My daughter had ghastly throats (known in this house as the throat mank!) until she started T3 - now gone forever we hope! If your GP is not agreeable to doing any of this then your next recourse is to go to a doctor privately - not an NHS doctor who does private work as they use the same rules as NHS doctors.

Look at the list on the main TUK site and see who might be able to see you:

thyroiduk.org.uk/tuk/diagno...

or is this what you have already done? Not sure who Dr. C is. P.M. me if you want to give more details. I don't think I have the whole picture.

Jane x x

sandrab1969 profile image
sandrab1969 in reply to

Yes Jane I have been to see Dr C Hendon London from the list. I am currently on Levothyroxine 100mcg per day and have been since January 2010.

in reply to sandrab1969

Some people are very lucky and get the appropriate diagnosis and treatment they need straight away. For others it requires a bit of detective work, and so it turns into a process of elimination.

Can you please list all of the tests you have had done recently. Is it just the thyroid and adrenal tests? Have you had the tests done as recommended on the main TUK site? Your GP can do these.

Since it appears that your adrenals are working hard it may just be that you need to try some different thyroid replacement. Has any Dr. suggested this?

...and always bear in mind that the best measure of your thyroid health is your symptoms. If you still have symptoms then there is still something wrong, and sometimes the tests tell you very little. They can be VERY unreliable. This has been true in our house. Thyroid and adrenal tests have NEVER helped around here, and we've had to search further. My daughter's adrenal tests in particular have always been all over the place.

Jane x

sandrab1969 profile image
sandrab1969 in reply to

Thank you Jane for all your replies and all very interesting. I seem to be paying for lots of tests but nothing is moving forward in treatment diagnosis or my health. Dr C seems to of been quick to refer me back to my GP after the MEGA high nighttime cortisol result of the saliva test...but the 9am cortisol and urine are mega normal...so my next move is to go back to Dr C next Wednesday... what do you think I should ask?- any advise in moving forward. What results would you like me to post you? thank you so much for your time.xx

in reply to sandrab1969

If all of your tests are "normal" and you still feel unwell then there is clearly something wrong. It looks as though your adrenals are working hard. Dr. C. should be able to explain this to you. Ask him about your other thyroid replacement options and possible vitamin/mineral deficiencies.

Sometimes it's a case of eliminating possibilities before moving on to try other things.

Jane x x

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