Eep! Diagnosis of Chronic Fatigue?


Oh my goodness! What have I done? Just gone and got myself a diagnosis of Chronic Fatigue from a CFS consultant!

Really didn't expect that to happen or be so quick :( Good news is that there is a programme of therapy here about how to cope with fatigue in daily life, which is what I'd wanted. But is this going to really cause me problems in in the future? Any advice or cautions much appreciated!

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52 Replies

  • Here are my latest results, from March. Got no thyroid following cancer, taking Levo 125mcg and Liothyronine 40mcg

    TSH = <0.05 (0.30-6)

    Free T3 = 7.6 (3.6-6.4)

    Free T4 = 16. 4 (10-22)

    Edited to correct dose.

  • SilverAvocado, sorry about the CFS diagnosis. I hope the training helps you cope better.

    Did you take thyroid meds before your blood draw? FT3 is over range.

  • No, I didn't take it it that day.

    I'm concerned about that high T3, too.

  • SilverAvocado, dropping 10mcg T3 should drop it back into range. If you can't bear to decrease T3 try reducing T4 to 125mcg.

  • Thanks Clutter :) I echo people in in the the other thread saying you're a star :)

    I'm just about to try reducing the T4 and upping T3 to change the ratio. I think I'll take your advice and drop the dose a tiny bit in the process. May just cut T4 but not increase T3.

  • SilverAvocado, thank you :)

    T4 is working with T3. Reducing either should reduce your FT3.

  • Just noticed there a typo and I'm already on 125, not 150mcg.

    I do wonder if that T4 is even doing anything, because the fairly high T3 is there and available.

  • some people don't convert t3 well..apparently, i don't. I would not lower the t3, if you don't have hyper symptoms. If you feel you need to lower, i too would lower the t4 dose.

  • I was diagnosed 10 years ago and I find is that no matter what is wrong with you from then on its because you have CFS!

  • Yea, Fixit, that's what I'm worried about. I was amazed how quick he was to diagnose me. I think really it was just fatigue for longer than 6 months, and TSH in range.

    Have you had any of this fatigue training? I'm hoping to get get bit of help with cooking, and maybe how to make the best use use of a walking stick. Sometimes I take one out, but am often worried it'll be more of a burden so I don't.

  • I have found a lot of useful info from two books healing is possible Neil Nathan MD and why cant I get better Richard Horowitz MD

  • You can get the first chapter of Why Can't I Get Better for free here

  • Thank you!

  • Thanks, Pooh10, I will check those out.

  • Gosh. I don't know whether to congratulate you or commiserate SilverAvocado.

    If it was what you wanted, then great news. At least you can now receive the treatment and get on that path to recovery.

    I didn't even know there were CFS consultants.

    What sort of therapy will they be offering do you think?


  • It sounds quite good. There are training workshops about coping with fatigue, and gradually increasing activity. Also CBT, which apparently helps lot of people. No idea if it's actually good or just sounds good.

    I don't know whether to be congratulated or commiserated, either :p

  • Lol.


  • Hehe , It will probably be horrible :p

    I'm gonna give the whole thing try, tho. Have so far been thru two CBT treatment programme without any CBT happening to me. I do wonder if it can be helpful. Mindfulness certainly is.

  • I love mindfulness but it has to come from oneself.

  • Personally I wouldn't want to accept that - I refused to be referred to a CFS clinic. It might not be your thyroid, from looking at your results, but something must be causing it. Chronic fatigue is a symptom, not a disease.

    I hope the programme helps you, but I would still want to find out what the root cause is. Have you looked at iron, B12 etc?

  • Thanks Harry. These are exactly my worries.

    I've just finally had the full set of B12, folate, ferritin, vit D. Disappointingly they all look good. My B12 was very over-range. The doctor said I might drink too much milk! Gotta look up whether there's there's anything negative about that.

  • If you haven't already, look at Sarah Myhill's website - she has become a bit of a specialist in fatigue. She isn't currently taking new patients as she is too busy, but there are some very useful articles that might give some clues

  • Thanks! I will have a look over there!

  • Yes...she is brilliant and takes the reader right through all the self help.

  • Interesting, I recently had a high b12 test result as well. Again, makes me think it's something with the thyroid.

  • My latest hope is that adrenals will turn up something. My saliva profile results were v high in morning and very low at night. So I'm taking a Nutri adrenal, and is looking promising.

    Notably, the CFS guy didn't look into adrenals. Seems like they they really don't believe in anything less serous than total adrenal insufficiency.

  • What did you expect?

  • Don't know. In still just beginning beginning to pull different threads together. I'm currently having first signs of success (fingers crossed) with treating my adrenals, so it's hard to remember that mainstream medicine doesn't even consider consider that a thing!

  • I knowwwaaaaa. Just found that out a couple days ago. Endocrinologist told me that adrenal fatigue is not recognized in medicine. I thought science was about exploring and researching to find answers to problems, not about closing your mind to possibilities when you're presented with a problem you don't like or understand.

  • Something I've found is that medicine has got nothing to do with science. Medicine is a bundle of guidelines and procedures, that are developed by committees. Doctors aren't trained n science at all!

  • So sad because we rely on them for this very thing. Maybe we are learning the hard way that we can't rely on them at all. For such an important job to not be taken more seriously is shameful. If you don't listen to your patients, how can you help them?

  • Hi,

    I crinch when I see someone has been diagnosed by so called CFS. My wife was diagnosed with this by her doctor and I'm not having it. The problem! My wife believes her doctor and describes him as a good doctor. All see is this guy keeping my wife Ill and filling her with NHS drugs to keep various other ailments at bay. It gets better.... I my self have hypothyroidism and have been on a long journey of recovery. I'm not getting anywhere if the truth be known but I keep trying.

    Good luck


  • Do you have Hashimotos?

  • No, I've had cancer, so got no thyroid.

  • Hypothyroidism.. meds not getting to your Cells, even if labs look ok, is a big issue, a common issue. . May be the cause of your Fatigue. You could always change your meds..maybe t3 only and raising until your symptoms go away. Just a thought.

  • Thank Faith63. Atmo on quite a large percentage of T3. Am thinking of slowly fazing that into entirely T3. Partly that's the only option my Endo is is able able to do. She's didn't know know about about anything besides TSH, really. But But at at least she she is prepared prepared to prescribe T3.

  • are you in the UK or US? Very rare to find a doc willing to prescribe t3 in the UK, let alone do all t3..pretty amazing. Is the doc an Endo or Alternative doc?

  • I'm in the UK. She's an Endo, but primarily surgeon doing breast and thyroid cancer. I think the deal is bit easier after cancer and radiation, because the standard UK set up seems to be to have T3 all during RAI. Is actually actually the cheaper way to do it, because you have to be starved of thyroxine during the radiation.

    I've been lucky in some ways, as she's fairly open - minded. Knows nothing besides TSH, tho.

  • Very interesting. Your thyroid labs look good, but i wonder what your reverse t3 is. You may not convert well and t3 would be helpful..i hope so!

  • Recently had my rT3 tested. Is that that the the only way way that conversion can be poor? The The result e was:

    21ng/dL (10-24)

  • Your rt3 is near the top of the range. It should be toward the bottom of it. This is showing that you are converting your t4 into rt3, instead of least at the time of the test and it can happen for many reasons. A med with more t3 or t3 only would be best. Inflammation, low iron, many things can cause a conversion issue. I tracked mine for 16 months and it stayed bad.

  • Thanks, Faith63! The only comment I've I've heard heard about this is that it's 'fine', but I did think it was quite a high number.

    Is it the case that only T4 can be turned into T3, and not the T3 that I'm taking?

  • T4 is the only thing that makes rt3. The rt3 blocks your meds from working, as you may know.

  • Thanks Faith63. I'm going to take a a combination combination of of your and Clutter's advice and cut my T4 a bit.

    Thank you so much for taking the the time to to look at my result.

  • Be careful, they will get you to go to CBT so you can learn how to deal with exhaustion. Sounds great but what they will teach you is that how you feel is a result of how you are thinking. That is NOT true if you have a medical issue. Of course crying and sitting in a corner wouldn't help but I believe almost everybody here is doing everything they can with the bit of energy there's still left.

    So please, be careful and listen to your intuition. They got me a lot of therapy and meds but I always knew something wasn't right, I knew it and felt it.

    CF is a symptom not a disease, it is very handy for the docters because they will give you a "diagnosis" and won't have to keep looking for answers. And everytime you feel unwell and go to the doctors they will blame the CF. Very easy and you are wasting time and energy because the real cause isn't treated.

  • Thanks, Flower3, this is exactly exactly what I'm afraid of.

    Did you find there was anything useful in the CBT, or was it all just about dismissing medical issues?

  • All therapy can be helpful but only if everybody agrees it's a medical issue. I have nothing against therapy, it can help to talk about your struggles with the disease. But CBT to change your thought because they see them as the cause is not okay to me.

    They didn't dismiss my symptoms, it was just learning to know what my thinking pattern was and if I could change that. If you are constantly negative then of course that wil not help you. I'm a positive person so I will always try to look on the bright side. CBT wasn't any help to me. Also because it was more like dealing with it. And then and now still I can't do that. I will not accept the way I am feeling and live my life like a 80 year old, I keep searching and thank god there are still options and treatments to try/do.

    Of course it is a personal experience, you could try it. If it isn't anything for you or they treat you like a person with a mental illness than I would leave. It isn't worth all your energy then, you already need all the energy you have left.

  • Thanks, I think that's good advice. I will keep all that you're saying in mind on the day I go down there!

  • SilverAvocado,

    I have absolutely no experience of this therapy but would say all you can do is to try it. You never know, you might find it a positive experience and get loads out of it.

    Good luck, positive thoughts and that much needed energy,

    Flower 007

  • Thanks Flower007! The thing I'm really hoping for is help with with things like cooking, using a walking stick and graduated activity.

    And maybe to be be able to get access to other services like housecleaning - I'm sure some of this stuff is out there, but it's so hard to find out about, especially if the the whole reason you need need them is coz you can't get get about. I only found out last week my pharmacy can deliver, when I've been dragging myself down there for 2 years.

  • Yes. Lots of pharmercies deliver.

  • There are quite a lot of UK Internet pharmacies which can be useful - though check out delivery charges.

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