On a private blood test that does TSH, FT3 and FT4
Hopefully as FT3 and FT4 were not tested by the doc, and never are, something may show up!!
Or I could have wasted my time.
Why did I order??
Well, having searched and searched for info on CFS, it would seem that graded exercise, pushing yourself to do more, is the way it is treated.
That aint gonna work as I go to the gym twice a week, used to be 3 or 4 times but that was too much for me. So how can I get better pushing myself, when I do more than most CFS sufferers anyway, so how can graded exercise help me?? I want to be rid of this damn aches and pains and stiffness and sore dry eyes and everything else!!
Ann xx
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ChemicalAngel
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I wouldn't say you have wasted your money as you are exploring all possible avenues in a bid to get your health back and that is not a waste. I did the same but also paid for rt3. Hopefully they may show something which people on here can comment on.
Have you looked at the Action for ME website and ME Association for information? Pushing yourself and graded exercise is not always the way forward in all CFS clinics and neither do they all have the idea of thinking it is all psychosomatic. If anything they may say to reduce your gym work as either way for any illness pushing yourself too far is never good. I know been there and bought the t shirt. I have CFS/ME but have just recently found out I am also hypothyroid with adrenal insufficiency. I'm not able to write much more today but will try message you tomorrow to explain things a bit better and hopefully offer some support
I am on the waiting list to be seen by the team lead for triage, to see if it is CFS, and then placed on the waiting list for treatment, and we are looking at mid to late april before I see them, and another 12 weeks for treatment!!
I havent looked at ME sites, just the ones that are CFS, and they all seem to say that you need to push yourself that little bit, to get your body to do more before the exhaustion sets in.... hell just getting out of bed has me exhausted and wanting to get back in!! lol
I am seeing the funny side of it all, and not letting it get me down, as I dont want to be fobbed off with antidepressants as the last lot the quack gave me, stating that I was depressed, made me feel like a zombie within a couple of days so dont want to go back down that route. I have been treated on and off for 20 years, but the last time he gave me different meds and they did not suit at all, and I told him but he said to persevere with them.
I am at work tomorrow, so wont get on here till after 7pm, with needing to have tea etc.
CFS and ME, interestingly, were identified/recognised just about the time that the TSH test became the 'gold' standard for hypothyroid testing, leading to thousands being told they were 'normal' when it is clearly not the case.
Although some CFS/ME cases are not resolved with thyroid treatment, a huge number are helped; and maybe those who are not are just not getting adequate treatment.
One thing is sure, Prof. W. is barking up the wrong tree talking about 'somatoform disorders'. These problems are real.
As you are most likely aware, the term 'CFS' is nothing more than a description of a group of symptoms, which is, to my mind just a way of sticking a label on something and then sweeping it under the carpet. And although 'ME' sounds more like a genuine attempt to identify an illness, it. too, is a symptom description which is literally 'pain and inflammation of the brain and spinal cord'. It is a scandal that after so long they still only use a symptom description for this group of illnesses.
It's interesting that many of us Hypothyroid sufferers find that we are very prone to get viruses and infections. I just wonder if there will be a 'Eureka moment' when a line of research reveals a common origin for all these problems - and then goes on to find a proper treatment...
In the meantime we plod on, searching for someone or something to help us, and sharing our little snippets to hopefully give some relief or support to others.
I do hope you are able to find the balance which will help you.
Ann, you may find the following statement from the ME association in 2008 regarding GET interesting which clearly calls into question the effectiveness of graded exercise and moreover suggests it as being harmful to some.
I was dx'd with CFS back in 2005 and was treated with a combo of GET/CBT - both unworkable and ineffective. The problem with any of the very limited treatments being the onus is dumped on the suffer of not helping themselves so therefore the 'cure' is to change thought patterns/behaviour and if that doesn't work then the patient is non-compliant. That dx felt like a 'thorn in my coffin' & probably would have been if I had 'co-operated'.
Obviously you have to work through whatever is offered but be careful the GET is not detremental.
Just a thought have you ever been tested for Sjögren's Syndrome it's an auto immune disease wich affects the mucus membranes causing dryness in eyes mouth etc. It also causes joint pain stiffness and lot's of other nasties.
Dear Ann,
I don't think this applys to you because of your range of symptoms but I was diagnosed with CFS a few years back and was not particulary help by the clinic. I was however greatly helped when after my second child somebody decided I was deppressed. I was no different than I had been from the previous 20 years feeling exhaused all the time. I was actually feeling happier than I had ever been and I am a psychiatric nurse. I was adamant I wasn't deppressed, and had tried anti d's in the past that had never helped. I was assessed by a female shrink who immediatley admitted me to her day hospital. She was I think the first doctor who had ever listen too my whole history of fatique and she said I was dysthymic (Which is a long term deppression that starts in childhood or teenage years and is often not picket up because people do not realise they are deppressed because they have always been this way. She tried me on a couple of anti d's then put me on venlafaxine. When I had antidepressants before they were always prescribed a bit half measured but this woman said they would increase they dose untill I felt better and instead of giving up when I said they weren't working she increased. After about 6 weeks I was a different woman and the cfs has completely gone. Please don't always feel that doctors are writing you off as mad or your symptoms as unreal if they offer anti d's. The symptoms of depression can and usually are very physical and in my case were not accompanied by low mood even. I am just trying to say that it is worth a good go at anti d's if you feel you have cfs as there is no current cure for cfs but deppression can be treated, presents almost exactly the same and is worth having a good go at to at least rule out. The side effects of anti d's can improve after a few weeks and it is worth pushing to get dose increased rather than stop if they don't seem to work. You will probably all hate me for this.
Hi Joy, Why would I hate you for expressing an opinion hun?? You put some valid points across, that do make sense.
Whenever I have been treated for depression in the past, there has always been a trigger. 4 Miscarriages, my nana passing away, the loss of my dad just to name a few things over the last 20 years or so.
I have got pains and tingling in my hands which doc sent me for xrays for as he suspected carpal tunnel, but nothing there, and have got the same tingling and pains in my lower legs and feet, feels like pins and needles and doesnt ease off, and are worse when I get into bed....
I could go on, the list is endless!!!!
Anti-D's are good in their place, but I couldnt have carried on with what I was given, as I walked out on a crossing, while traffic was going, and was nearly run over. Thank god I was with my hubby and not my daughter as I he snatched me back. I was like a total zombie, and the doc didnt give a toss what I was like or how they had effected me. He just said to try to do without. Wouldnt give me what I had in the past, probably because at the time prozac was over prescribed by most GP's!!
I don't hate you Joy. I think that you are right especially with depression which can floor you. It is just a pity that it is often diagnosed without any psychiatric assessment when you present to your GP with fatigue etc., and I think that is why it is getting bad press here. It is often the case that we could have depression as well as hypothyroid. I think that I am right in saying that t3 is used to treat depression. I own up that I was depressed when I was ill. Whether it was the hypothyroid or the effects of a long term illness makes no difference. You can have more that one illness at a time and be treated in different ways. I was also quite manic when Hyper but I had the sense to keep it to myself heheh. I noticed a huge difference when I started t3 . It was like a light had gone on in my head and the world is a sunnier place. I get up in the morning happy at ungodly hours like 8am without that dreaded dragging feeling. I am just happy that I am feeling a lot better and I think that the medical people need to tear up the solutions and start giving people a chance to get well by using everything at their disposal.. By the way I was originally told I had CFS which started in the nineties and somehow managed despite my gps diagnosis to become graves and toxic nodules... Sorry for the rant people but it is very frustrating... and Joy I think that you are great......x
A friend of mine has ME and told me three things helped her recovery: the first is to eat several small meals each day; the second is to eat protein at every meal; the third, which she described as the whackiest thing she'd ever done, was to go on a 'Lightening Project' weekend. The latter is a an intensive form of Cognitive Behavioural Therapy. She said she felt as though she could get well if someone showed her how and this did the trick. She said does work best if you keep at it after the course. She now leads a pretty 'normal' life.
An aspect of your continued illness that won't be covered by your GP properly, unless he is exceptional is B12 deficiency. The blood test he will do has too high upper end of the range that means you could look normal when you are dificient.discover. It is a serious deficiency.
This video clip explains it well, you may need someone else to watch it with you and may have to watch it twice, but you will see why the normal blood test sdon't pick it up.
Following full blood count tests, my GP had a letter from haematology saying I needed to go on B12. I've never seen the letter so I don't know whether the letter specified pills, but that's what I got. I suspect it said B12 replacement as I think a haemo would be better educated. I've not been told whether I have pernicious anaemia or not. I have a list of medical problems as long as my arm and in a ten minute appointment I only every get to the immediate priorities which have been cancer and a herniated disc! I must put it at the top of my list for my next appointment. Will watch the video above in bite sized chunks as I have the attention span of a flea!
I believe that ME is a 'dumping diagnosis' which some doctors use when they dont know what is wrong with you. My husband was diagnosed with this - had all the symptoms, referred to the ME clinic.Scored top marks on all the symptoms, He had been ill for 12 years, last three very ill, couldnt walk, in pain in all his joints, always wanting to sleep - he was told there was no treatment other then 'graded exercise'. My husband told me he would rather be dead if he had to feel like this for the rest of his life.
I insisted he was referred to an endo which the GP was not happy about but did agree in the end. His TSH/T4/T3 were all 'within range'. He was taking 125mg of Levo (this was the highest dose he could take, any more and he got toxic with severe symptoms of burning all over his body).
I asked the endo for trial of T3 for my husband and BINGO within DAYS he started to feel better - within a week he could walk up the road to the shop, he hadnt been able to do this for over a year!. All this ill health for the sake of changing to T3 only. Its a disgrace. I believe he could not convert T4 to T3 although his blood tests did not suggest this!
Dont give up you can get well ( I am also hypo and look after my own health as our GP is useless and is only helpful when repeat prescriptions are needed)
Well done for fighting for him. It is shameful that we have to fight for ourselves when we are most vulnerable, shameful too that a website like this one is the only line of help for so many.
I, too, was diagnosed with: depression, 'myalgia' (ho,ho. I KNOW it hurts...), high cholesterol, been told "some people are 'just tired'!", need to go on a diet/get more exercise, (Yeah - how?) etc. etc. etc. But doctor, my troubles only started when you reduced my thyroxine from 150 to 100. Nonsense. it's all in your mind.
We've all been there, done that, got the T-Shirt but still it happens. It is totally scandalous.
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Am I a poor converter?
test Results
Hypothyroid, exercise, activity
Is it possible to be hyper with an FT3 of 4.3 (3.1 -6.8)? I need some help before I see my GP next week please....
