You all know ..

[FallenAngel]

reading posts I am wondering why I don't know .. 25 years ago I was told my thyroid wasn't working , started 25mcg thyroxine now I am up to 100 daily , and I feel no different than I did all those years ago , I was told the diagnosis would get me back to normal .. what I am wondering is you all seem to know your numbers I don't . also talk of different thyroid meds confuses me ..

am having pituitary looked into , short shync test showed low cortisol only 450 at 10.30. I am looking into the connection between AD's and cortisol , time will tell if its a pituitary tumour or not ..

My point is I just don't know my numbers .. I also notice a fair few self diagnose . I have to say so far my endo seems to be doing all the right things , maybe I am just lucky that they seem to want to find out whats wrong with me ..

Been told for now to take steroids only if I feel ill to help boost my cortisol ..test on pituitary are on going .. worried sick .. even tho I know tumours are often benign ..

[Clutter]

Hi FallenAngel,

We only know our thyroid levels because we ask/fight/threaten legal action to get printouts of our blood tests with lab ref ranges from GPs and endos. Patients are entitled to see their test results under Data Protection Act foc within 40 days. A small charge may be made to cover the cost of paper and ink. It shouldn't be more than a couple of quid. Alternatively, an appointment can be made to view records online and the patient can make notes.

I hope your other tests sort out your problems.

[Hidden]

Hi FallenAngel, The first time I asked for a print out og my blood test results grom the receptionist I felt a bit nervous about it because others have had problems getting them. However it went ok, she just asked eere they to takr to hospital as thr consultant can view online.I replied no for my own records and she went off anf did them.I asked if there was any charge and she said no.I must admit her face didn't look very happy but I got them!

[dolphin5]

It's good to get your results if you're having problems. I was never bothered for the 14 years that I felt ok, but then a new GP decided I was being "over-medicated" and we should drop the dose. I agreed to a trial, and soon became ill. She remained adament about the dosage so I started to study the numbers (and everything relating to my condition). It has empowered me, and allowed me to demonstrate the reality of it. After 9 months of misery, I finally managed to see an endocrinologist, and he couldn't argue with me as the facts were evident. I provided context with the blood test results, without which they cannot (in my case at least) be interpreted. For example, I managed a 59 mile cycle ride without the problems I expected about a month ago. I was trying to demonstrate that my T3 would drop way below the reference range, from it's normal place at the bottom. In fact, as I was so exhausted before the ride, I rested for two days, happily thinking it wouldn't affect the T3 level (as this only lasts 4 or 5 hours anyway). In fact, it obviously allowed me to stockpile T4, which allowed my body to find enough T3. Also, my results over about 4 doses of the lower dose of Levothyroxine are the same as on the higher dose, thus showing that my much reduced activity levels (due to exhaustion) normalises my blood levels. So I'm left feeling crap, but with blood results that make my GP want to lower the dose again!!!! (I now have approval from the endocrinologist to resume the higher dose, and he even wants to examine my pituitary function, which is fine by me.) So, take control - it's your body and your life, make sure you get the best deal for yourself!

[mistydog]

I was the same - never questioned anything while I felt "OK". Well, usually crap, but having two small kids (and a big one, lol) always on the go, no wonder I was exhausted, right?

Changed Dr, wanted to lower the dose based on results, guess what? ... I'm seeing an endo this week, but in any case I shall go to my GP and have a strong talk to him about this site, get him to look "beyond" the numbers. He often mentions that Thyroxine used to be used for depression - I think he thinks I'm depressed. I'm definitely not.

[shaws in reply to mistydog]

Hypothyroidism which is undertreated can go hand-in-hand with depression. Does the doctor know that thyroxine is supposed to convert to enough T3 (which is the hormone every single thyroid receptor needs for us to function) and our brain contains the most cells. We have to have enough T3 to function but as you probably know they rarely test T3 and only diagnose on the TSH which is from the pituitary gland - not the thyroid. gland.

Unfortunately, the GPs are following the guidelines laid down by the British Thyroid Association.

[FallenAngel]

been on thyroxine for 22 years , never really felt any benefits . always told my levels are ok .. waiting for mri scan for pituitary

[Hidden]

You need to know your levels. OK means nothing. Example: one woman wears a size nine shoe and another a size 6. Both sizes are OK for the woman who wears the shoe, but if you make them switch shoes with each other, the women would not do OK. Ranges on thyroid levels are the same. If you have low T3 with high T4, you might not be converting the T4 into T3 but your TSH would be low because of high T4, so a doctor going by TSH would think you are hyper, but because you don't have T3, you are actually hypo. And while your numbers might be in range, if they are at the low end of range (size 6) and you need to be at high end of range (size 9) you could feel awful but your numbers are OK. Ask for all tests and get copies. You just may need added T3 or more T4 and not pituitary testing. Your Endo could also be right on track about your pituitary, but it is beneficial for you to know your thyroid hormone levels. Adrenals can become sluggish when we are hypo and pituitary can stay suppressed when on added T4. We are all different. And many doctors just don't seem to get that. With dogs and cats, the TSH does NOT reflect thyroid hormone levels and/or function in 25% of animals, so TSH is not even used for them by most good veterinarians. Same is true for people, but most doctors don't know it. I hope there is nothing wrong with your pituitary and you just need more thyroid hormone.

[FallenAngel in reply to Hidden]

thank you have my mri scan in a week , people keep saying don't worry pituitary tumours are hardly ever cancer , but when I am severely depressed all I do is worry , no one wants an op right ...