Feeling a bit of a mess.

[snyffa]

Today is my first day here in this forum, be gentle, A little about my confounding medical picture. I am 31 years old, when i was 14 I Had Glandular fever, I never really recovered from it, tho have improved, When i was 21 i was falling asleep in lectures, Fainting in toilets and needing to go to bed at 4pm in the afternoon. It was then I was diagnosed as Underactive thyroid. When i was 22 I also got a retrospective diagnosis of chronic fatigue syndrome, taking into account everything that passed from when i was 14 up until that point. In the early days It would be so obvious to me when the levo was no longer doing its job, id go to the dr they would do tests, and I always needed my TSH to be a little suppressed and my T4 to be above normal for me to feel better....one marriage and 2 children later I'm sick and tired of living this half life, So i went to my GP and demanded to be seen by an ENDO i hadn't been taking my Levo because i didnt feel i was getting any benefit, however after 6 weeks off it, i was noticebly more tired, Falling asleep in the afternoons again etc, My GP did a test to see what my Thyroid was doing off the Levo. My results were

TSH 5.85mul/l (0.35-350mu/l)

T4 11pmol/l (8.00 - (21.00pmol/l)

So back on the Levo I go, and off to the Endo with some bloodworm done after taking the Levo for about a month

So here we are, Today, Tired, Un-refreshing sleep, Brain frog, constipated, heaviest i have EVER been, Cant loose the weight, Absolutely zero libido (my poor hubby) low mood, PMT

Go to see ENDO, She reduces my Levo to 125mg daily whereas before i was on 150mg one day 125mg the next because my TSH is suppressed, and my T4 elevated. She then says she wants me to have a Syncathen test, because my cortisol level was showing as CORT 95 nmol/l (138–635nmol/l) She said she would expect to see 400+

So Im not on reduced Levo, 20mg of Hydrocortisone per day pending results of the Syncathen test which she seemed to imply was likely a red herring and dud result.

Im lost confused, All i want is to feel well, Ive read all the info on NDT treatment, but there isn't according to a spreadsheet I just looked at, a single prescription being filled for armour in the entire of East Anglia. She said she didnt think i needed T3 because of the side effects and the fact I have Free T4 means my T3 will be fine etc

HELP ME!!!!

[shaws Administrator]

Welcome snyffa

No wonder you are fed up, and tired, confused and everything else. Because the doctors tell you one thing and you instinctly feel another.

Your Endo is wrong regarding T3 - it is not dangerous otherwise I wouldn't be here typing this at present. I am on T3 only and feel fine. Levo didn't suit me although it does suit many people but they wouldn't be on this website if that's the case.

NDT will not be prescribed in the UK (although a couple of Endos might if the patient is not recovering through normal levo. The BTA make False Statements in their guidelines which Endos have to follow otherwise their jobs may be in jeopardy.

thyroidscience.com/Criticis...

Reducing a patient's levo due only to the TSH level is not advisable and this is the reason (unless of course you were very overdosed). Go to the date July 15, 2006

web.archive.org/web/2010103...

There are other topics at the top of the page which may interest you but some links within may not work as Dr Lowe died and the website is now archived.

Other members will respond to your question and be helpful. Some have self-medicated although ideally we wouldn't want to do this but some have recovered. You are a mother with small children so why cannot you be given thyroid hormones which make you feel much better. You do say you feel best when your TSH is suppressed and Dr Toft of the BTA agrees that some of us do need it suppressed. If you'd like a copy of his article in Pulse Online email [e-mail]

[nightingale-56]

I am in East Anglia and there is one person on NDT (Armour) at my surgery, although when I ask for it,it is glossed over. I am presuming this patient pays for it privately. I do wish you well.

[MariLiz]

Hi snyffa, have you ever had your levels of B12, ferritin and folate tested? Lots of the symptoms of underactive thyroid and low B12 are the same, and the two conditions often go together. I am on B12 injections and they have made a difference. I also believe the thyroid medication doesn't work properly if the B12 is low. Worth asking for it to be tested. MariLiz

[snyffa]

That was tested this June, Folate was high range and B12 was mid range so that doesn't seem to be the issue. Thanks

[behappy1]

Adrenal insufficency would explain your stmptoms too and since your cortisol reading was low at 95 that's why Dr wants you to have a synacthen test. This will test your adrenal glands to see if they react adequately. It will be interesting to see the results. You may need hydrocortisone if its not working properly.

[snyffa]

They already gave me hydrocortisone in the interim whilst awaiting the results, i cant say i feel any better on it