Hypo and chronic fatigue

Hi, I've been on NDT for over a year, but although it improved symptoms, it did not restore full health. My Dr has referred me to the Chronic Fatigue clinic here, but there's a waiting list. In order to get referred, I had to agree to go back on Levothyroxin. Looking at the treatment offered, its CBT and follows an exercise regime - forgotten what it's called. What it sounds like is that they don't believe we have a metabolic illness. It's just awful.. Meanwhile my health has gone down the pan on Levo - but I've only been on it 3 weeks (150mg). If anyone has any suggestions I would be grateful..

Thankyou

45 Replies

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  • (((Jackie101)))

    Go back on your NDT. There is clearly something in that which your body is finding helpful...how many grains a day were you taking ?

    Some are fortunate and return to feeling well. Some find a way to improve their wellness but never return to their previous rude good health. CBT can help get you out of the dark well we sometimes find ourselves in, when there seems no way to claw out of it, but it will not help your condition which is real, not in your head, not an attitudinal construct. Be careful exercising to excess; it will deplete your T3. Good luck

  • Rapunzel

    You're thinking of "normal" CBT. The kind of CBT given to people with Chronic Fatigue Syndrome is different and is based on "challenging false illness beliefs" which is not the same as normal CBT.

    In other words they are trying to brainwash people into believing that they aren't really ill, it's all in their heads, and their problems are all their own fault.

    Jackie101

    The exercise regime referred to is called GET, which stands for Graded Exercise Therapy. It involves people being persuaded to exercise whether they can do it or not. So, pain is supposed to be ignored, and if you collapse you have to get up and keep going.

    Both CBT and GET for ME/CFS are truly appalling treatments that are more akin to torture. People who have previously had mild to moderate ME/CFS have been left so disabled by this treatment that they have become permanently bed-ridden for years because their condition has progressed to being severe.

    The treatment became the standard in the UK and many other countries around the world after the PACE trial, done in the UK with taxpayer funding under the auspices of the DWP (Department of Work and Pensions).

    People who didn't get better on the PACE protocol were deemed to have decided to be ill, and they had benefits removed. Also, anyone who had an insurance policy covering ill-health had payments stopped by the insurance company because they weren't covered for mental health problems.

    The PACE trial has been debunked, but the treatment is still the "gold standard treatment" in the UK although other countries e.g. the USA are beginning to drop it.

    Some articles on the subject :

    theconversation.com/how-a-s...

    virology.ws/2017/03/13/an-o...

    In my opinion (for what that is worth) you should be going back to your NDT and you should turn down your "treatment" at the CFS clinic.

    For more info on thyroid issues, do lots of reading on this forum.

    Jackie, since you didn't feel well on NDT, you could have been on the wrong dose, or the wrong meds or the wrong combo of meds. You might have low nutrients and need to supplement. You could have issues with cortisol levels, or other hormones. There are lots of things you could try before giving up and putting yourself in the hands of someone who thinks you have CFS.

    For more info on CFS and the PACE trial, and how the condition and the "treatment" affects people it is worth poking around in the following forum :

    forums.phoenixrising.me/ind...

  • The kind of CBT given to people with Chronic Fatigue Syndrome is different and is based on "challenging false illness beliefs" which is not the same as normal CBT.

    How bliddy awful. It's a wonder my gp hasn't shoved that nonsense down my neck. Cave Jackie ! Use the search facility and ask lots of questions xx

  • What I don't get is why they think it's cheaper to fund CFS clinics, rather than offer an appropriate metabolic treatment, which meets individual needs...Where is the logic???

  • Because doctors don't treat the physical effects of CFS any more. The CBT/GET is, I believe, done in groups, so cost is kept down. (I'm not sure about that though).

    Once someone has CFS on their medical records they don't get treated for anything because any problems are blamed on the CFS.

    An anecdote I read on the PR forum I linked was about a patient who had a broken rib which was protruding through his skin. He went to A&E with a carer and the doctor and nurse who dealt with him refused to even look at it and told him he wasn't allowed any treatment because of his CFS. I never read what happened after that.

    Another issue is the saving in benefits. Any ill health benefits are removed because the patient is "choosing" to be ill.

  • Sounds like CFS has become a synonym for "malingering", "neurotic", "wants to be ill" and CFS clinics have become a dumping ground for "the heart-sink patients"... One might think we are living in the Middle Ages.

  • Don't forget hysteria as well.

  • lol

  • Who wants to be ill ? I thought that was called Munchausen's syndrome and is incredibly rare ? Many, many people have CFS/ME neither of which existed, I've read, until levo replaced ndt. :P to them all

  • We want to be ill and frequently visit our doctors and make them miserable and seek their attention because we have nothing else to do...at least this is what they seem to think lol

  • Spot on and this is so heart-breaking to see. Thank God I got better before getting worse. All thanks to Dr Skinner. I have been on NDT since 2011 and would never go to any other treatment. I don't talk to my GP or my Endo about being on NDT and everyone is happy. To be honest I hardly ever see them these days although I do go to my annual Endo check ups (following my papillary thyroid cancer in 2005). Every time I see my Endo, she is over the moon with my test results.

  • It sounds like CFS is seen as a non existent thing.. It's totally crazee!

  • You supply your own answer, Kitten: "individual" needs. The NHS has no time, money nor inclination to investigate individual medical needs. The trouble with glandular based disorders like ours is that everybody's malfunction is, pretty much, unique. And everybody's optimal treatment is unique. :-(

  • Thank you - but it's not good news is it! I don't see the point of accepting treatment that's based on the idea that I haven't got an illness. They can shove it sideways! I'm considering supplementing my Levo with T3. Someone sent me a stockist in Greece but no idea how to use it.. I was on Thyroid S before..

  • What with the T3 is puzzling you?

  • The wife of one of my clients was referred for graded exercise - she died after a couple of months (twisted gut).

  • That is appalling! The NHS tortured her! When the gut is twisted the intestine/bowel will die and gangrene and/or peritonitis and/or sepsis will set in. I hope the family involved sued and won a fortune, and that heads rolled. I also would like to think someone (or several people) were charged and found guilty of manslaughter.

  • No, they didn't. To be fair, she was rushed to hospital but died during the operation - she had something similar before which they had managed to fix with , but still seemed to think that graded exercise and CBT was a good idea for an elderly lady with chronic pain and fatigue. Of course, she'd been conditioned by the CBT not to complain ...

  • OMG, it gets worse!

  • I was on 3 grains a day. I also supplement with Vits A-D, and magnesium. Been disappointed that my health hasn't improved as much as my friend who recently went for a 5 mile hike and then went out dancing on her day off - she'd in her 60's too! I think the darkness you mention is largely caused by not being believed that our illness is physical not mental. I have bad brain fog as I write!

  • According to this chart centraldrugsrx.com/pdf/Thyr... you are way off on what you should be taking ( I think - I have no medical training ) to replace the ndt you were on.

    The sad thing I've learned is that whilst some of us do recover, others find themselves skidding along the floor for a long time 😔 sorry for the bummer but it's best you know 🙄

  • how is your iron and b12 and or if you have high or low cortisol, you will be fatigue.....test by saliva...and can order test online...it also effect thyroid

  • Hi Jackie, I think it's disgusting that you are being made more ill (by having to go back on Levo), so that you can be given a dubious treatment for an illness you may not have anyway. Why should that be a condition of your treatment? It is unethical. Have you investigated what other areas might be causing the continuing fatigue - B12, D, folate, ferritin for example, or adrenal issues? I am assuming your thyroid levels are all optimal. I have been following the Auto-Immune Protocol for about six months and it has made a great difference to my energy levels. ( paleoautoimmune.com) It's quite hard going though, especially if you have fatigue as a major symptom.

    I became very ill when I did a CBT graded activity course, having been diagnosed with CFS a long time ago. They try and persuade you that you are better than you actually are.

    Can't you carry on taking the NDT (assuming you are self-medicating) and pretend you are on Levo, then see what the course is like? Who's to know?

  • I became very ill when I did a CBT graded activity course, having been diagnosed with CFS a long time ago. They try and persuade you that you are better than you actually are.

    How perfectly horrible for you when you have a genuine condition (((Scazzoh))) An absolute pox on these charlatans

  • ... don't we often read here that exercise depletes our precious T3. So if it is LOW in CFS sufferers - due to not being revealed because of inadequate testing - then it seems a lose lose situation. I despair ....

  • I think all of these useful replies mean that I have to go back to self-medicating. Yes I'm on a high dose Vit B I've not looked into folate ferratin or adrenalin - can I get a test done privately?

    Thankyou

  • Hi Jackie, could you see if your doctor could do folate, ferritin and D3 as these can cause fatigue if not optimal? There must be something else going on which is why you are not feeling better. I see you were on 3 grains of NDT a day which is the equivalent to 225 levo, so what you are on now is not going to compensate. What happened when you tried to raise the dose of NDT? Having high or low cortisol can stop your thyroid hormones working properly. Cortisol is an adrenal hormone. This is a useful link:

    thyroiduk.org.uk/tuk/testin...

    I've just seen Rapunzel posted this earlier. If your cortisol is high or low, there are herbal adaptogens and other remedies you can buy on line.

    If it's any help, I am now on 3 grains of NDT after six months and feeling a lot better, but I know there are other issues which need sorting, cortisol being one of them.

  • It would be kind if some T3 could be added to levo. New Research has shown than some need T3 added to T4 to relieve symptoms.

  • Yes I'm thinking of staying on T4 levo but supplementing it with T3. Someone sent me a link to a stockist. I think that's my best bet, given that I didn't get better on NDT..

  • Yes that sounds a good idea. Re NDT sometimes we have to try more than one make as sometimes it's the fillers/binders which may cause the problem. Also when introducing NDT you begin on the equivalent of Levo and around every couple of weeks increase by a small amount until you are symptom-free.

  • Thankyou - Using levo keeps my costs down, I feel like I've run out of time for experimenting with other NDT brands plus the U.S. ones are quite pricey. When I first started researching NDT, I noticed the price went up 3 fold..

  • Many, when the dose of levo is high enough (when symptoms are relieved) they do fine on it. Your temp and pulse should dictate if you are on too much so just lower to previous dose.

  • If you return to NDT the following may be helpful. Also, I bet your doctor didn't test your Free T3 level. Both FT4 and FT3 have to be towards the upper part of the range, not middle or below. If you can get a private test for both of these it might throw more of a light into why you still feel well on NDT. You can have a private test if it is affordable.

    thyroiduk.org.uk/tuk/testin...

    When on NDT, you start on a dose (usually equivalent to what you were taking on levo or slightly lower) and every two weeks add a little until you are symptom-free. If your heart goes too fast or you feel too hot (take temp and pulse) drop to previous dose.

    web.archive.org/web/2010112...

  • This is a list of clinical symptoms and if we have some of them and they resolve when on an optimum of thyroid hormones for us individually, we are on the right dose of hormones and we'd feel well.

    thyroiduk.org.uk/tuk/about_...

  • Go back on NDT. Drop the levo. Don't tell anyone. If you are hypothyroid (and maybe hypoadrenal too), anything other than trivial exercise is going to make things worse. Active thyroid hormone (T3) sometimes plays a major role in treating Fibro and CFS.

    While you were on NDT, were you able to get a FT3 test to verify your FT3 was high in range - i.e. that you were not under-treated?

    Hope you are using all the supplements suggested here, e.g. B12, D3, folate, iron.

  • Best advice is....

    Get a hold / download onto Kindle the book by Dr Sarah Myhill: "CFS - Mitochondria not Hypochondria" and shove it in the face of anyone trying to 'treat' your CFS / hypo as a purely psychiatric issue. She has an award for that book which explains the physical goings on in CFS; so anyone treating CFS as psychotic is living in the past. Personally, I think it's down to poor gut health due to a Western Diet full of processed foods and soils that are depleted of nutrients; an atmosphere full of pollutants and artificial stressors (e.g. working night shifts etc) that trigger some of our 'mutant' DNA to cause problems..

    She was an endocrinologist and now specialises in CFS. Read her section on thyroid... and follow all the advice on methylation and supplements...

    High homocysteine is the 'missing link' between the two conditions (hypothyroid and CFS/Fibro) and one of its causes is poor absorption of folate in the synthetic form of folic acid. Another cause is pernicious anaemia due to a lack of intrinsic factor (b12 deficiency).

    In order to lower homocysteine, a knowledge of methylation is crucial... and it'll help you overcome both conditions. T3 is extremely helpful, but it won't help just by itself, so look into all the other nutrient requirements too and get tested for them (privately if necessary).

  • HLAB35, she also has a great Wiki website with all sorts of really helpful stuff on it.

    drmyhill.co.uk/wiki/CFS_-_T...

  • :-)

  • Thanks for the link there...

    Oh and also, you must address low stomach acid as a priority too.... it is often the reason that we are constantly suffering flare-ups. There are many approaches to this, so look into them.. digestive enzymes are a good starting point.

  • I know they say we shouldnt take iodine But i take iodine drops every other day & find it helps me get going,i also cook with Coconut Oil which is meant to also boost Energy, it has also helped me keep my weight down & iv been 8st 9lbs for the last 5yrs whereas i was 10-11st before.

    Iv been on Levo for 26yrs

  • Thanku - I got some herbal iodine and iron mix from my reflexologist and I found it helped, but someone on here advised strongly against it. Yes I've been following the Tom Brimeyer diet a bit, with coffee in the morning and butter and coconut oil instead of polyunsaturated fats. It's supposed to be better for liver function..

  • Its so confusing, mine has been through trial & error & im still extremely interested in taking NDT myself i even asked my doc who dismissed the idea instantly saying i shouldnt read rubbish on internet (yet he didnt even realise that youre meant to take Levo on an empty stomach with at least 30mins b4 having anything to eat or drink)

    How do u find out correct doses etc to take & where is a trusted place to get it?

    Sorry back to your Problem,

    I get aches & pains galore & have for over 10yrs i think it maybe worth u asking for a Fibromyalgia test as apparently Hypothyroidism & that go hand in hand.

    Worth checking hun

  • Yes my Dr was very skeptical. It was annoying that it didn't work for me - I wanted her to see me get better on NDT.. The STTM ( Stop the Thyroid Madness) site is very very good! It tells you how to dose etc. I bought the book as well. Thyroid S from Thailand is the cheapest, but I would go for the US or Canadian versions if I could afford it.. My friend go herself better on Thyroid-S + high dose Vit B.

    Thanku

  • Id be worried abov getting it from Thailand & maybe thats why u didnt have great results ???

    Im also on that page & also Hypothyroid mum which is where i read to watch where u get your medication from as alot of Asian sites arent made to do such strict checks.

    Maybe get some HDT from a decent site may make a huge difference.

    Good luck

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