Well, its been a year.....

[ChemicalAngel]

And it doesnt surprise me!!!

It is now a complete full year of feeling so bloody crap!! Am still losing my hair, still feel like I have been battered, my get up and go has refused to make an appearance, I am so exhausted all the time, and am very stiff and sore whenever I get out of bed in a morning, or whenever I have been sat down for 15 mins or more!! The endo said that it was CFS, and that he would contact me when the rest of my vitamin results were back.....

I knew I wouldnt see the endo before Christmas, so hubby still owes me £20!! A bet is a bet!! lol I bet him £20 that it would be after Christmas when I was seen, and he said no, it would be as soon as the bloods were back..... I will remind him when he gets in!!!

So am going into the New Year none the wiser, and still sore and in pain etc etc etc, and nobody is doing squat about it!!

My friend said that for Chronic Fatigue Syndrome, they test you to see how much exercise you can do, and then keep increasing it. Well sherlock, explain why when I was going to the gym 3 times a week, that I wasnt getting any better, and wasnt losing weight, despite not having much of an appetite, nor eating loads of crap!!

Ah well, after the new year, I am going to ask my GP to send me to someone else for a second opinion.

Ann xxx

[Warren184]

I know it doesn't help but I have felt that way for coming up to three years now. Despite 75mcg of thyroxine and being told I am in the normal range I still ache constantly and feel 30 years older than my 58 years. I have gained 6 stones in weight and feel like a whale and all. Get told is you'll feel better when you've lsot weight. Ok Sherlock how do I do that feeling the way I do. My get up and go got up and went along with my hair and energy. Lets keep in touch and see if we can help each other through this huh? I'm so grateful for my husband who not only picks up when I can no longer continue cooking cleaning shopping and generally doing 'stuff' but hasn't left the bitter and twisted ill person I now resent I have become because no one will help. The intolerable tiredness and aching is the worst if only I could is now my mantra. Good luck in 2013. Some people on this site seem to know the answer and now feel better. Good luck to us both.

[shaws Administrator in reply to Warren184]

This is an excerpt of a Rebuttal Dr Lowe sent to the BTA (which they ignored completely which I think it is a shame as the suffering continues) and the last is re low dose of meds which 75mcg is if you are still having clinical symptoms..

in 2002,[27] researchers evaluated the health status of

hypothyroid patients using T4 replacement therapy.

Compared to matched control patients, hypothyroid

patients on “adequate” dosages of T4 had a higher reported

incidence of four diseases: depression, hypertension,

diabetes, and heart disease. Hypothyroid pa

tients on inadequate T4 replacement (their TSH levels

were elevated) also had a higher incidence of strokes.

In addition, hypothyroid patients chronically used

more prescription drugs, especially for diabetes, cardiovascular

disease, and gastrointestinal conditions.

Patients on T4 replacement had scores 21% higher

(worse) than controls on the General Health Questionnaire.

The researchers wrote, “This communitybased

study is the first evidence to indicate that

patients on thyroxine replacement even with a normal

TSH display significant impairment in psychological

well-being compared to controls of similar age and

sex.”[27,p.577]

thyroidscience.com/Criticis...

This is another excerpt but I don't have the link:-

Without question, you should do something else. Unfortunately, your doctor prescribed for you what our clinical and research experience has taught us is the least effective approach to thyroid hormone therapy—the use of T4 alone. Synthroid, of course, contains only T4.

Moreover, the dose he prescribed, 0.05 mg, is extremely small. It’s so extremely small that it's highly unlikely you'll benefit from it in any way no matter how long you take it. On the other hand, that small a dose may actually slow your metabolism more and worsen your symptoms. Perhaps this has happened, in that you say your symptoms have worsened since you started taking Synthroid.

It’s tragic that millions of patients such as yourself suffer needlessly for years because their doctors prescribe extremely small doses of T4

[rossilin600]

Hi. It makes my blood boil when I keep hearing how people like you, me and hundreds of others are being misdiagnosed, are you on any thyroid meds at all, if so how long and what strength, is there any thyroid or similar probs in your family and what have you been tested for. I had been ill after being diagnosed with hashimoto hypothyroid when my son was born 28 years ago and have had so many unresolved health issues mostly been put down to stress (which of course most of us are anyway because no one listens) or can relate to how bad we feel. I insisted on seeing an Endo and he was not really interested until I told him that my father had had a goiter, was treated with lithium for bipolar, than has a pituratity tumour, then things perked up, I was given lots and lots of tests, short scyn, acth insulin test and then a long syn test which showed up I have Addisons disease, if you read articles about this I believe this chronic disease that manifesters as CFS and fybromyalgia can take years to develop and diagnose and is commonly caused by thyroid meds not being able to convert into your cells, that is why the TSH test they go by just prove it do not work. I am now on 25mg of steroids a day and am still hypothyroid on 100mg of Levothyroxine which the endo cannot correct until adrenals are functioning better, on a MRI scan if show I have an empty Sellica under piuturity and also have an abnormal growth hormone, most of the more severe symtons(CFS severe now) I have been pushing at GP's for the last 6 years. I beleive if it was not for my own research into the many symptons, this could have ended up fatal, but the one thing I have learnt through all the years is insist on certain tests and make sure that you see the results and if not happy insist on seeing an expert. Please dont give up (there are times when you just dont want to struggle on) especially if you have a selfish and unsupporting family. Please keep in touch and let us know how your doing.

[ChemicalAngel in reply to rossilin600]

The endo has refused to give me anything, as my bloods were under 5 for the TSH, and he wont prescribe till well over 5, and he prefers you to be nearer 10!!!!

[amac]

This may be "old hat" but have you read Dr Barry Durrant-Peatfield's "Your Thyroid and How to Keep it Healthy"?

I was at death's door (similar symptoms to yours) until a few months ago. Now I'm running my own business again and looking forward to training again in the new year. I am far from perfect yet but I'm confident that Dr D-P's self treatment is working for me. I visited my GPs 3 times and had various tests before I decided that they don't have much of a clue and I wouldn't waste any more time listening to people who seemed to know less about this illness than I (now) do. I followed D-P's protocol TO THE LETTER!

I'm going to recommend the book to my fried's wife as she's been "diagnosed" with ME. The book has also made me more wary of my children's nutrition.

Good luck.

[snowstorm]

Echo Amac's suggestion. Excellent book. Acutually, by the time I had finished reading I was quite scared --- more from the dangers & results of incorrect,missed, over, under medication & in my case (this is the conclusion I have come to) treating me for the wrong thing because their initial investigations are soooo inefficient, insufficient & un-thorough. It is absolutely appalling. Another good book is Dr Wilson's Adrenal Fatigue the 21st Centuary Syndrome. These two books go hand in hand - well, I think so anyway.

[sporty333 in reply to snowstorm]

Oh I have dr wilsons book in the post on the way to me :0)

[Tangles]

Hello ChemicalAngel and everyone else who relates and understands how Ann feels.

I think before Ive posted you have been given some fantastic advise and support by those already understanding much more than I about our illness and indeed I shall order Dr Wilsons book as soon as I have finished this.

But my comment is, as I read more and more on this site how ill and despairing so many of us are the more frustrated I am becoming at the fact that nobody seems to be listening or wanting to do anything to sort things for us. I know we have advocates who are trying so hard to raise our plea but why, O why, don't they listen? What on earth do we have to do ? Each of us soldiering on in our own singular way, fighting for our well being and supported loyally by members of this site. But it seems we are just that. Singular . An individual fighting for a better quality of life usually with a Medic who doesn't understand an iota of how we feel. Just following the given guidelines and probably scared for his position if he moves out of them. Its a hopeless farce if you ask me.

And I ask again, wracking my brain (of which they took part away thinking that would make me better lol ) that there must be a way that we can join our forces to help those who are already fighting for us. So that they listen and act and realise what we are going through . . . .

What do you think ?

A Saddend Ann .(Tangles )

xxx