Getting nowhere.

[supremebeing]

Hi i feel a bit lost at the moment. Ive been suffering from thyroid symptoms for as long as i can remember but my doc says my blood tests are in the normal range. I was diagnosed with CFS a few years ago and im not saying i dont have it but i know its not just that. I had a thyroglossal cyst removed at an early age and can remember having symptoms earlier than that. My son also had the same cyst removed at an early age. I had bloods done recently only to be told my vit D is extremely low and ive been given tablets for it but no mention of a follow up test to keep a check on it. I am bad at the moment and feel im slowing to a halt. Is there anything i can say or do to get some help from the doc?

[rosetrees]

Get a print out from your doctor of the last set of tests that were done, with ranges. It's important to get into the habit of always asking for your test results. From experience I can tell you that this focuses their minds and stops them telling you things are "normal" when they blatantly aren't.

You need to get your TSH, T4 and FreeT3 measured. Many labs will try to refuse the fT3 test so your doctor might have to make a special request. If he or she refuses you can the test done privately. Then make sure that you have your Vit B12, Vit D, iron, folate and ferritin levels measured. Again you need the ranges.

You will then be able to post the results here and people can start helping you to interpret them.

It is my personal view that there is no such thing as CFS/ME which (as you know only too well) is invariably used as a dismissal and an excuse to offer you no further testing and no treatment. (I have my own website now on that very subject, aboutmy.me)

If you have been ill for a long time you may well also have adrenal problems, so it might be worth considering having the saliva cortisol test done by Blue Horizon or Genova UK. Instructions for how to order the test are here thyroiduk.org.uk/tuk/testin... or here thyroiduk.org.uk/tuk/testin...

[Hennerton]

Hi, First thing to do is ring your GP practice and ask for the latest thyroid blood tests, with reference ranges. Then post on here for people to comment. Chances are that your GP's idea of normal is keeping you unwell and the late Dr Skinner was convinced there was no such illness as CFS. He believed it was just untreated thyroid. If your Vit D is low, it may be that others are too. Ask your GP to test serum iron. Ferritin, B12, and Folate. If any of these are low in range, various symptoms arise. People who are hypo are often low in all of these. When you have results post here for advice. All need to be high in range. I hope you get help with this but if not you may have to go privately if at all possible. Look at Thyroid UK for details.

[Shaz123]

Hi I was diagnosed in 2004 with M.E./C.F.S and when I checked back on my full Medical Records my TSH levels were higher than they currently are and they have just increased me from 50mg of thyroxine to 125mg, I believe that we are all left to get to the point were we can no longer cope and even then you have to find a sympathetic doc who treats the patient not the symptoms, I attended 2 thyroid specialists and they were not willing to treat me with meds but then my practice has a very understanding doc who did. My hair fell out and everything, just be patient and keep on insisting you need help, the Vit D was really low too, got a super booster 10,000 units a day for 2 weeks and now take 10,000 units a week, Extra Strong Vit B and Chewable calcium along with thyroxine. My doc summed up my symptoms as hypothyroidism due to the constant inability to get warm, freezing all the time. So many symptoms and still not better but persevering. Have been getting treated for approx 1 year and have seen some improvement until TSH levels went up again, spoke to a lady couple of months back and it took her 4 years to get back on her feet, I had to wait almost 10 years to get help and am now hopeful.

[cloud1]

I am similar situ;as in ,i have suffered hypothyroid symptoms for many yrs but doc just says blood tests normal so no med.He doesnt care that my thyroid antibodies r v high;or about the symptoms(same old story..)Have u had ur antibodies tested;that would give u some 'reasurrance'(if they r high)that it is ur thyroid thats ill.I am plodding along trying to figure it all out myself;supplementing vit d and iron(as in tests was low..)and lots other vits.I have ben gluten -free for ayear,which helps enormously with 'brain-fog' mostly(if u have Hashis esp).Mon i go for re-tests(every 6mnths)and hopefully i will get t3tested too.I am resolved to try a thyroid med as soon as poss(self-med);but not quite yet there.Idid saliva adrenal test;showed some adrenal struggle.Its complicated,but keep going and defibately listen to ur own body/wisdom,not docs who dont have much of a clue about these things.Goodluck.