I am still tired and full of anxiety.

[crystal_rose]

ive been taking the thyroid medication for over three years now, and my concentration levels are so poor, i cant read for more than half an hour before i feel like passing out and i have sleep over my lunch break to survive the day. I have been transferred from doctor to doctor and they all have their own assumptions about how much of the medication i should be taking and keep changing my levels but no matter what, I dont feel any different.

[crystal_rose]

Thank you so much for taking the time. I'm in total shock that not one single doctor in the past 5 years has even come close to mentioning all that you have told me, i never heard of or knew of any of that. This really is making me disbelieve in the NHS.

[shaws Administrator in reply to crystal_rose]

We all learn when we wonder why we're not improving. Doctors know little about treating a dysfunctioning thyroid gland except look at the TSH and give other medications for the symptoms except a decent dose of thyroid hormones. From now on get a print-out of any blood tests with the ranges for your own records and you can post for comments.

If you've not had B12, Vit D, iron, ferritin and folate checked ask for these too as we are usually deficient which can also cause symptoms. Ask if he will do a Free T3 blood test but the lab might not so it might be worth getting one yourself, privately. We have a list of labs. Some cannot afford if they're on a low income.

[Jazzw]

How much levo have you been prescribed, Crystal?

[crystal_rose in reply to Jazzw]

Its a complicated situation with me as i ahve been seeing different doctors and they have been each prescribing different amounts, One said 150mg, the next said 200, the next said they were both wrong because i am now suffering Hyperthyroidsm as apposed to hypo and has brought me down to 100

[galathea in reply to crystal_rose]

And how did he arrive at the hyperthyroid diagnosis? What symptoms do you have? Losing weight, always hungry, too hot, fine hand tremor? No.... Thought not. I would put a bet on it that he is trying to treat you by getting your tsh to be within an arbitary guideline. Run from this'doctor'. He is relying on lab results, not his clincal judgment.

Maybe the best thing you could do, is get a full thyroid profile, free t4, free t3, tsh and antibodies so that you can see where uou are with it. If the doc says no, you can deal with the lab yourself and get change from £100. See tesing on the home page. thyroiduk.org.uk

The doc can arrange to test ferritn, iron , b12 and d3.. But if not then you can get them done yourself...

Its not ideal having to pay for your own tests, but you can spend months argueing the odds with the doc.... Time when you could be getting better.

G x

[Jazzw in reply to crystal_rose]

Maybe - but maybe not. There's a chance you're overmedicated but actually, unless you were experiencing hyper symptoms (racing heart, feeling agitated, losing weight), it might just be an uninformed doctor assuming that a low TSH reading is bad. The thyroid is something many doctors don't knows much about, I'm afraid.

ReallyFedUp's advice is great - see if you can get hold of your results and post them here for comment.

[humanbean]

There are several reasons why you might have been getting fluctuating test results.

1) There is a circadian rhythm to TSH levels. If you have blood drawn first thing in the morning for one test , then next time it is done at 4pm, your TSH level may be substantially different.

2) How recently you took Levothyroxine has an impact.

3) How recently you ate has an affect.

What you should do :

1) Always get blood drawn as early in the morning as possible - preferably before 9am.

2) Fast for 8 - 10 hours before the blood draw. Don't eat or drink (apart from water, which you can drink freely - you don't want to be over- or under-hydrated).

3) If you usually take your levothyroxine first thing in the morning, miss the dose before the blood is drawn and instead take it immediately after the blood draw.

4) If you usually take your levothyroxine last thing at night, miss the dose the night before the blood is taken and take it immediately after the blood is drawn instead. Then take your levo that night as normal.

5) If you usually take your levo at some other time or the time fluctuates, tell us about it.

The whole point of this hassle is for your TSH to come back as high as possible. Doctors use TSH as the gold standard of thyroid testing even though it is not actually a thyroid hormone, it is a pituitary hormone. If your TSH is low your doctor is likely to assume you are over-medicated and will cut your medication. If your TSH is high your doctor may raise it. At the very least it reduces the risk of you getting your meds reduced when it is inappropriate.

Stick to the same conditions for every test, because it helps to make one result more comparable to any you have in future.

[crystal_rose in reply to humanbean]

Thank you so much for taking the time to provide all these details, I'm terribly shocked that none of the above has ever been mentioned to me, in fact i was always told my blood test was non fasting!

[humanbean in reply to crystal_rose]

I decided some time ago that my blood tests should always be done under the conditions I wrote about above, if I can possibly wangle it.

My diet isn't the same every day - the amount varies, my timing of food varies, and what I eat varies. Since food affects so many things, in ways I couldn't possibly know, I reduce the variability between tests by sticking to the same (fasting) conditions every time if I possibly can. At least then I know that eating porridge for breakfast one day, and having last night's leftovers another day won't be a factor in changing my blood test results.

It doesn't help of course, when doctors spring the occasional surprise blood test on you. I try to avoid them by saying that I have an appointment with someone, somewhere else, can I re-arrange this for another day etc. Can't always be done, but I do my best.

[Hidden]

Lack of concentration, tiredness and anxiety are all symptoms of low iron as well as under treated hypothyroidism... you definitely need to know your serum ferritin, but it would do no harm to ask for a full blood count as well.

It is possible that your thyroid is being given enough levo, but that an underlying iron depletion (short of anaemia, probably) is causing the symptoms you describe.

Impossible to tell till you get the tests back. Wait till you do them before taking supplements, supplements will alter your results.

[crystal_rose in reply to Hidden]

Thank you for your response, Im so amazed at the amount knowledge everyone has on here about this problem. I'm getting responses i have never heard from any medical expert. So are you saying i need to head to the doctor and request a blood test for serum ferritin?

[Hidden in reply to crystal_rose]

Absolutely you should. You should say you feel very tired, and anxious, and you know these are possibly down to low iron, even if there isn't anaemia present, and please could your serum ferritin be checked and would s/he mind awfully doing a full blood count at the same time.

If the doc then pulls down your eyelid and says, "Well, you don't seem to be anaemic," you say, "I'd still like those blood tests if you don't mind, because I've searched hard on Pubmed and I can't find an evidence base for the colour of the inside of the eyelid ruling anaemia out. I can see it can rule anaemia in, but not out."

At which point they should give in. But probably s/he he will give in earlier and give you the ferritin/FBC test because it's pretty standard.

And then, a week later, you ring the receptionist and ask for a print out of the results. And when the receptionist says they're in range, not to worry, you say, that's lovely dear, but I still need a print out for my records. Then you collect it and print the results here and we'll all have a group think about it.

All the advice by those above is good too, so you should throw in more requests, especially for B12, folate, D.

[Hidden in reply to Hidden]

The eyelid test is called the conjunctiva test. It is not reliable for anything except advanced anaemia. Often docs try to use it to avoid ordering iron tests though.

[milnerb1]

Although thyroid might me your issue, your symptoms matched mine and sound like narcolepsy. This would have to be confirmed by a sleep study ordered by your doctor. My treatment is a drug called Modafinil and it is remarkable for increasing my focus, alter tends and productivity through the day and I no longer feel like I need to nap at lunch or multiple times during the day on the weekends.

[crystal_rose in reply to milnerb1]

Thank you for your response, you dont know how uplifting it was because i thought there is no solution to my problem.

Would you suggest i got ot he doctor to request this study an dhopefully be prescribed the Modafinil drug, it sounds like my dream medicine!

[milnerb1 in reply to crystal_rose]

Yes. I would suggest that you want to talk to your doctor about your sleep symptoms after doing a little research on sleep disorders. A sleep study is what can confirm a diagnosis. You could have sleep apnea or narcolepsy. Narcolepsy is characterized by the urge to sleep at certain times in the day. If you fall asleep quickly (I.e. Within five minutes) when you take a nap, can fall asleep in a meeting, or when driving, those are pretty typical symptoms. Some people (but not all) also have a condition called cataplexy where they are paralyzed and cannot move when they wake...which can be more scary.

[crystal_rose]

Yes yes I have cataplexy which i thought was called sleep paralysis. I explained this to my doctor but unfortunately no medicine can help with tis, or so I was told.