Exhaustion day 6 - want to scream but don't have energy

[Bears010]

Just home from A&E. Couldn't stand it any more and couldn't get through to surgery so gave up and went to hosp. Why did I bother!

TSH 'normal' 'we don't test for t3 or any of the others, you have to see an endo for those and this isn't an emergency so our endos wont see you, you have to be referred'.

I asked what other tests he did but he was not forthcoming. If I asked directly, 'did you test my parathyroid, cortisol, potassium, his response to each was either, 'it was normal' or we don't do those only an endo can (but he didn't offer those results until I asked). Oh, and 'we don't do a 24hr saliva test for cortisol it's not acurate enough, we only do urine tests'. I asked for copy of results and he said I had to write to the hosp and pay a fee!

So for someone who can barely stand, has palpetations and chest pain, muscle pain and cramps, tingling in hands and lips, headaches, back pain, dizziness, intolerance to light, severe fatigue, severe weakness and light headed with no sense of balance etc etc, I am in disgustingly good health, ABSOLUTELY NOTHING IS WRONG WITH ME!!

Aaaaaaarrrrrrgggggggggghhhh

[PinkNinja]

Ugh! How frustrating! I'm sorry you aren't getting anywhere with this. Keep fighting though!

Just a quick note, the saliva cortisol tests are very accurate. There was a study done into this a while back showing that it was actually more accurate and much cheaper than serum cortisol tests and could potentially save the NHS money. Many trials done that involve testing cortisol levels use the saliva test. In my book, if it's accurate enough to collect empirical data for research it's accurate enough for seeing if one has a cortisol problem!

I hope you find a doctor that can help you. Keep fighting and educating yourself. Arm yourself with the tools you need to fight the battle. It can be won. I am living proof of that

Take care

Carolyn xxx

[Bears010 in reply to PinkNinja]

Thank you so much for the supportCarolyn it really helps to know some people do get heard.

[shaws Administrator]

I am sorry you are feeling so bad. I had similar symptoms whilst on levothyroxine and I know how difficult it can be when GP's will not allow you to trial an alternative or even the addition of some T3. You have no details on your profile but have looked at a few questions. I think you have been hypo about 20 years?

If you email [e-mail] and ask for a list of NHS Endos/private doctors who may be able to help you recover your health.

Sometimes you wonder how we can be so ill and help is not forthcoming. I think, too, because we keep going to GP with additional symptoms and complaining that they think we are hypochondriacs (due to them diagnosing by the TSH) instead of suffering severely with either being undermedicated or the fillers/binders are affecting us even more.

You need to have a review and if you have had recent blood tests post again with the results plus ranges. Has your GP also done a B12, Vit D, iron, ferrin and folate as the first two in particular are usually deficient and can cause similar symptoms to hypo.

[Bears010 in reply to shaws]

Thanks Shaws

Yes been under medicated for 26 years

Asked for review when I saw gp friday but she said go rest. Hoping report from hosp will give her kick. She is new to the practice so must give her a chance, and to be fair i didnt have the wherewithall to push on friday. No bloods taken by her yet. Getting an appointment in under three weeks there is a major undertaking so when I do get to see her will post results from hosp.

Will email Louise today.

[Moggie]

If you have got the energy please copy this draft letter and get your results so that your new GP can't fob you off with the "Normal". If you have your results in front of you then you have half a chance of fighting your cause.

Its criminal that people are left to suffer they way you are.

ico.org.uk/for_the_public/p...

Moggie x

[Bears010 in reply to Moggie]

Brilliant!

Thank you sooo much moggie