Log in
Thyroid UK
91,850 members106,114 posts

Chronic Fatigue Syndrome

Chronic Fatigue Syndrome

Hi everyone,

Has anyone with thyroid issues been diagnosed with Chronic Fatigue Syndrome? My doctor just diagnosed me with it last week. According to tests I’ve had pneumonia and a few other really bad viruses. When I get a cold or flu I get really sick so it must have been one of those times that I got pneumonia and not even realised. Apparently these viruses are the things that could have triggered the Chronic Fatigue Syndrome that I have been told I have now.

I have been to a few different doctors and they don’t think I have a problem with my thyroid as all levels are fine but the antibodies are very high and have been for years. Apparently none of my symptoms are related to it

47 Replies
oldestnewest

Hi,

Do you have any of your test results for thyroid? (tSH, free T4, T3)

Often what doctors describe as ‘fine’ is not. (Tsh lower than 10 they regard as normal). Ranges have been adjusted (should be lower than 4) but some labs still give old ranges.

Also a lot of doctors don’t test for T4, and rarely T3. If your thyroid antibodies are high, it’s suggestive of autoimmune thyroiditis. Most likely hashimotos/Hypothyroid.

Eventually you are likely to become thyroid so if your results are “high normal” it’s often a good idea to treat you as is mildlyhypothyroid to bring your tsh lower.

If you’re tsh and t4 is normal but t3 is low (the active form) then it doesn’t reach the cell and you still get all the symptoms of low thyroid ... fatigue being one of them.

Do you have any other symptoms?

Did they mention Epstein Barr virus as one of the few you had? That is often linked to a trigger onset of hashimotos as well as recurrent fatigue.

Have you had any vitamin minerals tested? Namely iron folate Ferritin vit D and b12? All can cause fatigue.

Often after recurrent viruses/infections our guts and microbiome are disrupted. Especially after antibiotic use- it can lead to poor nutrient absorption, food sensitivities and leaky gut issues, which increase the thyroid antibody reaction- especially to gluten.

Sorry that may seem like a lot of info if it’s all new to you but I am very wary of doctors who rush to diagnose ‘CFS’ without ruling many other possibilities.

If you list out your symptoms and your test results (with ranges in brackets next to them) then people will be able to advise you better

7 likes
Reply

Thank you for your reply Saya85

I have attached my test results on my first message.

Antibodies are 1900 (<60)

Headaches, brain fog, memory problems, no energy, racing heart (at times) loss of appetite, feeling always thirsty, along with the Fatigue.

No they didn’t say anything about Epstein-Barr virus.

Everything else came back normal a part from the Vit D which I am now supplementing.

Thank you for the information!

Reply

Wow those antibodies are high!

Your thyroid is definitely fluctuating shown by your results. Always test first thing in mornings to get consistent readings as TsH is highest then. I agree with the other comments regarding hashimotos flare in September.

Although you’re overall tsh is <2.6 you may still benefit from low dose thyroxine.

However I would definitely consider strictly gluten free diet and selenium supplementation as these seem to be the only way to bring those antibodies down.

I suspect your gut is playing up the most. It’s definitely hard to find doctors who will test for gut infections - but if you could find a nutritionist they may be able to get to the bottom of it. I’m not sure how it is in australia. Do also check thyro-gold website. I believe it is based in Australia/NZ and you can call and get some brilliant advice from them!

I would ask for a copy of the vitamin test results too. If you are in ‘low range normal’ for iron or b12 you could certainly do with some supplementation - a lot of YoUR symptoms point to those.

2 likes
Reply

I’ve just read through your previous posts and it appears you’ve been getting lots of similar advice. Especially regarding b12 and ferritin (iron)...as well as vit D. seems like you might be better off following it all up.

You should find YoUR symptoms improve quite a lot. They are all crucial to good thyroid control in themselves... once these are in control you will know how much the thyroid is being affected and your symptoms.

Oh and I would also consider testing for DIABETES. A lot of your symptoms could be explained by that or other conditions. They can often overlap

1 like
Reply

I actually was tested for diabetes two weeks ago and everything is normal there.

Yes all the advice I have been getting is very similar.

I have been taking vit D supplements but only started a little while ago so haven’t noticed any changes yet.

Reply

I have recently started a gluten free diet, too early to tell if it’s doing anything yet. But I always feel worse after eating gluten products.

A friend recommended a nutritionist few days ago so I’ll be making an appointment to see her soon. I just have to get the money together.

Reply

When i researched Thyrogold last month, the site was in the US and thats where they ship from. (I'm in South Australia )

Reply

Hi Claire

Not long after I started in levothyroxine - I had a lot of aches and pains along with extreme tiredness - I read an article in the daily mail about people being diagnosed with fibromyalgia who were actually being missed diagnosed and had low vitamin D , asked my endocrinologist if he would do this test and yes I had low vitamin D so started myself on supplements from Holland and Barrett and helped me.. So hoping your aches and pains might help reduce as you have been found to have low vitamin D - obviously other vitamins need checking too, B12, ferritin and folate - I know you said diagnosed with chronic fatigue but symptoms are very similar.

Regards Lisa

1 like
Reply

Hi Lisa, thank you for reply. I have been tested for everything else and it looks like I am only low in vitamin D (for the vitamins part). Whatever is wrong with me I know I am low in that so hopefully taking supplements will help make me feel a little better regardless.

Reply

That's a start do yes take those and magnesium regularly and note how you feel before taking and in about a month or two time. Good luck x

1 like
Reply

It all started with the Epstein Barr virus that I contracted in Brazil 20 years ago while working in a orphanage. 3 of us got Epstein Barr/ chronic fatigue and fibromyalgia. Now it comes and goes along with the newly diagnosed Hasimotos Thyroiditis and breathing problems and chronic hives. Thank you for tying them all together. I was wondering.

Reply

You’re welcome !

I keep thinking it started with Lyme disease I could have possibly contracted abroad on my honeymoon or EBV a few years later.

There is some specific advice for EBV sufferers but vitamin D is essential in fighting against it and building up the Td8 cells I believe as the infection hides in the thyroid gland.

You can get recurrent EBV infections too x

Reply

Claire, I’ve been looking at your previous posts. You *do* have hypothyroidism. Your positive antibodies mean that’s caused by Hashimoto’s. Unfortunately, you also have an absolute idiot of a doctor who has absolutely no idea what he’s talking about. Please, please, find another doctor - one who won’t let you stay ill for years on end.

Chronic Fatigue Syndrome is a bucket diagnosis at the best of times - something to call it when doctors have absolutely no idea what else to call it. But you, you have clear hypothyroid symptoms, and an autoimmune condition that means your thyroid function, what’s left of it, will decline over time.

Hypothyroid patients tend to have gut absorption problems (many doctors don’t seem to understand this) which is why it’s common to develop nutritional deficiencies, such as iron deficiency anaemia, B12 deficiency, Vit D deficiency etc.

Are you still taking thyroid hormone? If so, how much? Your last TSH was 2.6 I believe, which means you need an increase in dose. Have you ever had your FT3 measured?

9 likes
Reply

Hi Jazzw, Thank you for your reply.

I have been to so many doctors over the years. In the last two months I have been to five... and that’s not a joke.

No, I’m not taking anything. I was on thyroid hormone about a three years ago for six months but that doctor moved out of the country and the next doctor took me off everything and I haven’t found another doctor who will listen to me. So I’ve started to believe what they are saying.

My vitamin D is low so I have been taking supplements for that. But that’s literally all I’m taking for anything.

No I don’t think I have ever had my FT3 measured. I don’t even know what that is.

Reply

So where are you? In the UK?

Asking so I can point you in the right direction for do-it-yourself blood testing.

Like far too many of us, you may end up having to take matters into your own hands. You’ve probably seen people asking where to source thyroid hormone on this forum. Would you be up for doing that?

Reply

I actually live in Australia. I have seen people self medicating on here but I have been a bit nervous of doing that myself if I get the dose wrong I know I could make things worse.

Reply

OK. So when did your doctor take you off levothyroxine?

And how much levothyroxine were you on at that time - before you were taken off it?

Reply

I was on it around three years ago only for about six months so I stopped taking medication about two and a half years ago. I think my dose started at 50 then went up to 75

Reply

Ok. I’ve been looking at the results you posted here: healthunlocked.com/thyroidu...

What’s happening is that you had a Hashimoto’s “flare” back in September - basically, you had a lot of thyroid hormones released from your thyroid at that time as the antibodies were attacking it. Now you’re back to being under active. I see your TSH was 2.6 in November. So you’re swinging between overactive and underactive. You don’t have chronic fatigue - you have Hashimoto’s.

But I’m not sure how you find a doctor in Australia who will recognise what you really have! Have you ever been referred to an endocrinologist?

1 like
Reply

Yes. I recently went to an endocrinologist and she looked at my thyroid ultrasound and all of blood work over the years and she said there was nothing wrong with my thyroid and told me it was normal for some people to have high antibodies, even as high as mine. She assured me it wouldn’t be causes any symptoms. I’m finding it hard to believe that but at the same time, if you can’t trust the experts what do you do?!

That can’t be good for me to be swinging from over to underactive can it?

Reply

Well, it’s why you’re feeling unwell, certainly!

Sooo frustrating that doctors know so little about the thyroid. It’s the same here in the UK unfortunately.

Might be worth having a google of “Hashimoto’s Australia” to see what comes up. When I did, I found reference to a Facebook support group - it’s likely that members of the group may be able to point you towards more knowledgeable doctors in Aus.

Have you ever been advised to go gluten free? Many Hashi’s sufferers say it seems to help reduce the level of antibodies.

3 likes
Reply

I’ll take a look at that Australian support group on Facebook. Thank you for researching that for me.

Yes I have gone gluten free recently because I tend to feel slightly sick after eating it.

Reply

Read Dr Myhills website. She is based in Wales. Her site has a huge amount of useful info for CF patients.

drmyhill.co.uk/wiki/Categor...

7 likes
Reply

Utter Tosh!

GP tried to diagnose me with CF after my thyroid op, but I don't believe in co-incidence, besides a few friends have been diagnosed & that's IT, no more tests, your left foot could fall off & it's CF xx

7 likes
Reply

I was told I have CFS but I told them I wasn't interested. I'm well aware I have a weakened adrenal gland already just by how poorly my body responds to stress, I don't need a diagnosis to tell me that. I was born with only 1 kidney and it wasn't discovered till my mid 30s hence I only have 1 adrenal gland and I pushed myself during my teens and 20s and early 30s surviving on only 4-5 of hours sleep a night and lots of caffeine and nicotine.. So with my gluten free diet & taking better care of myself and daily supplementation with probiotics & digestive enzymes and adrenal supporting supplements I'm back in the zone again... It was a long slog, 4 years to get back to where I'm not just randomly falling asleep and even just falling asleep sitting up during the day with my hands on the keyboard with no memory of actually falling asleep!

I was also diagnosed with Gilbert's syndrome which has similar symptoms to CFS but the doctor told me not to even give Gilbert's a second thought.

I have no Thyroid issues.

5 likes
Reply

Essential to test vitamin D, folate, ferritin and B12. Always get actual results and ranges.

Post results when you have them, members can advise

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels stop Thyroid hormone working, then thyroid tests can appear ok, but actually you are hypo

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

Low stomach acid can be an issue

Lots of posts on here about how to improve with Apple cider vinegar or Betaine HCL

thyroidpharmacist.com/artic...

drmyhill.co.uk/wiki/hypochl...

scdlifestyle.com/2012/03/3-...

healthunlocked.com/thyroidu...

Other things to help heal gut lining

Bone broth

thyroidpharmacist.com/artic...

Probiotics

carolinasthyroidinstitute.c...

Importance of magnesium

hypothyroidmom.com/two-vita...

6 likes
Reply

Hi I was 'diagnosed as having chronic fatigue as the doctors believed they had ruled out everything else. I had Epstein Barr and hashimotos so I have a higher risk of Chronic Fatigue. In the meantime I found a different endocrinologist who prescribed thyroid armour and vitamin d which has made a big difference.

Reply

In terms of getting diagnosed, it can be a mixed bag. I have got a diagnosis of Chronic Fatigue, although I don't believe in it at all, and now self medicate with NDT.

I was very reluctant to take the diagnosis, as many people think the treatment will get worse. But for me it's been quite good. I live near a chronic fatigue treatment centre, where I've had one on one sessions with a specialist nurse all year (not much of a treatment, but this is a person who understands what living with fatigue is like and can confirm it's not just my imagination, things like the wedding I went to over the Summer and couldn't leave my hotel room for anything besides the ceremony are very hard to accomplish), but the best thing is a 6-weekly patient meeting, where everyone talks very openly about their illness and lives. It's extremely useful.

I've also found that many people there have had lots and lots of testing, often for neurological things, but many others I'm not familiar with. So it's not necessarily true that a CFS diagnosis means you won't get further investigations.

Although I think the usefulness of this for me has been a bit of a perfect storm of lucky things. At the same time my Endo continues to treat me the same as she would before - which is basically nothing. I don't respond to standard thyroid treatment, so I was getting offered nothing. But also my thyroid has been removed, so I'm not in danger of anyone telling me my thyroid is fine. Although my blood tests can look fine on the synthetics, even thought my symptoms are hardly affected. It might be worth checking if you'll be offered any treatment with the CFS diagnosis, and if so how far you'll have to travel.

1 like
Reply

Hello Claire,

Yes I was diagnosed with CFS many years ago - I really believe that the Thyroid gland plays a big part in CFS. I really don't know what is going on around the world I just can't believe how many people suffer from Thyroid problems. I know that the Iodine is vanishing in the soil and our water. Most probably from all the chemicals that are being used these days..

2 likes
Reply

Hi, I take offence at CFS not being treated as a genuine condition. I have had it for 20 years now. Was bed bound for 2 years. Have made significant progress but will probably never be fully fit again. Please don’t make comments about things you do not know about.

2 likes
Reply

drmyhill.co.uk/wiki/Main_Page

I strongly recommend looking at Doctor Myhill's website for a lot of information on CFS in combination with hypothyroid - she's my favourite UK endocrinologist as she really understands the issue on a cellular level. Her book 'Chronic Fatigue Syndrome - Mitochondria not Hypochondria' has won awards. I have gone along with a lot of her advice and it's helped me enormously. Symptoms of fibromyalgia can also occur, especially in middle age and her advice is equally useful for that.

Getting t4 to convert to t3 is a big obstacle - you need the former to replace what was lost due to antibody damage, but thyroid hormone resistance (I believe) may be occurring in some of us and we need to help nudge the process along... by taking betaine HCl with meals; finding out your 'triggers' to antibody production - so in my case going gluten and lactose/casein free and minimal amount of alcohol; going low and slow with thyroid hormone replacement; addressing adrenals (and stress) at the same time (vitamin d, Magnesium, Zinc, vitamins B5 and p-5-p) as stress can prevent conversion; taking iron - or have iron rich foods, if, like me you struggle to absorb non-haem iron; sublingual b12 as well. Amino acids are also recommended - I've been trialling a few as supplements but wouldn't be able to say - ,'Oh you should definitely have this, or that' ; it's worthwhile having bone broths which have a lot of them in - and they're very healing for the gut lining. Taking d-ribose is good if you're flat out exhausted - in a black coffee / water with some lemon.

Symptoms I used to have:- IBS, dry skin, hair loss, panic attacks, lower back pain, loose hyper-mobile joints that were vulnerable to damage, ovulation pain, period pain, heavy periods, fogginess and memory issues, peripheral neuropathy and numbness in extremities, tinnitus, jaw pain, sinusitis, declining muscle tone, bloating, swollen neck, painful throat glands whenever I overdid things, short of breath, exercise intolerance, heat intolerance, cold intolerance, itchy patches of skin, asthma, stressing over minor things, exhaustion, having to sleep at 9 am, 2 pm and going to bed at 9pm, anger issues with PMS ... the list goes on ...

Now:- Some fatigue and aches following overdoing things and the 'usual' issues with menopause and lack of those hormones... ;-)

1 like
Reply

Hi, thank you for your reply. I am very grateful for the information everyone is giving me, it is hard to take it all in though. So much to study - I just wish the doctors were knowledgeable enough to just tell me what I need to do instead of trial and error on my place.

I have a lot of symptoms that you said you use to have. I have get rid of gluten out of my diet recently as I always felt sick after consuming it. Caffeine, sugar and alcohol also make me feel sick so do my best to stay away from them too. I think one of the biggest things that is getting to me at the moment is not being able to sleep right, most of the time to laying there in bed with all the lights turned off but cannot sleep. That is making me more fatigued throughout the day of course.

1 like
Reply

Caffeine used to be an issue for me too, due to the same problem - insomnia! L-theanine (found in tea) can counter-act the stimulating effects of caffeine. I take it in powdered form so can control the dose. Many teas are very nice, but, it is rubbish in combination with any foods with iron, so must be drunk away from those.

w.r.t. Insomnia - could be the adrenals going haywire... magnesium, good levels of b5 and b6, zinc, vitamin d and b12 are important - also inulin fibre at bedtime with some gluten free porridge. Niacin (the flushing kind) can also help with insomnia - but take a low dose - as the flush is quite dramatic for first time users!! Soya lecithin may be helping me due to its phosphatidylserine content (see Dr Myhill and nootriment.com/phosphatidyl... that reduces cortisol production when stressed out - it's not the same as soya protein - but many with thyroid problems (Graves antibodies) should probably avoid it and a lot of forum members would be very wary anyway as it's believed to mess with oestrogen levels... so I'm sticking my neck out risking mentioning it!!!

chriskresser.com/harmful-or...

Reply

Have you been tested for Hashimoto's thryroiditis? I was diagnosed with that at the same time as ME over 20years ago now, following some sort of 6 week virus that totally floored me. Since then I have also been diagnosed with Sjogrens syndrome and Hypermobile Ehlers Danlos. These autoimmune illnesses often go together, but can take many many years to be diagnosed . It is a minefield trying to work out what is what. I didn't get many answers until I was refered to a Rheumatologist because of osteoarthritis and lots of irregular blood tests - high ESR, anti nuclear antibodies etc... I hope you can make sense of your condition.

1 like
Reply

Thank you for your reply Machupa. I'm not sure if I have been tested directly for Hashimoto's thryroiditis, just the antibodies, TSH, T3 and T4 levels I think. And those tests they are saying everything is fine. Even though the antibody levels are 1900 (Range: <60)

I'm really sorry to hear that you are suffering too. It is certainly a minefield

Reply

ME/CFS is a very real, very serious condition affecting multiple organ systems, INCLUDING the endocrine system. There has been a lot of promising research around the work recently including some prominent researchers at the University of Melbourne, who are looking at genetics, metabolomics, and the microbiome, while other researchers at Stanford, Cornell, Columbia, etc. are looking at immune system irregularities. The latest thinking is that its an autoimmune disease, with many being triggered by vital infections.

There are many with ME/CFS who also happen to have Hashimoto's. As my ME/CFS doctor explained, some of us are more prone genetically to collecting autoimmune diseases, and if you have one, it increases you likelihood of others.

Its not surprising to run into so much ignorance about it on this UK based site. The UK has been notoriously bad at helping patients with ME/CFS, essentially dooming them to the rubbish heap, while promoting cognitive behavioral therapy and graded exercise therapy as treatment, which has done more harm than good for most patients.

This was based on a vey flawed study done by a self-promoting scientist who kept promoting it in the face of much scientific evidence showing that ME/CFS is a biological disease where patients are typically not depressed, but where mitochondria an inability to produce sufficient ATP, the body's energy currency.

NICE, the UK medical authority very recently realized the errors in the flawed recommendations, and are now scrambling to bring ideas for treatment in line with where the science is.

This common disease has been criminally under funded for the past 30 years, but efforts are underway catch up. Due to this tragic situation, there are no perfect treatments. This is made more vexing as its recognized that there are subsets of patients with different issues, though they share the same issues, so treatments must be individualized.

Treatments that patients are trying that are helping include antivirals, antibiotics, immunomodulators, antiinflammatories, intravenous immunoglobulins, monoclonal antibodies, lipids, amino acids, B vitamins, antioxidants, vitamin D, minerals, botanicals, and hormones, including thyroid, adrenal hormones, and low carb diets.

Definitely work on your thyroid. A gluten free diet is a good idea. Addressing any adrenal issues is important, too. But if they don't fix your symptoms, get to an immunologist or infectious disease specialist, if not an ME/CFS specialist, to delve into what else might be going on.

Open Medicine Foundation, Solve CFS, Phoenix Rising, Health Rising, and Simmaron Health are all good resources for learning more.

2 likes
Reply

I like your response and completely agree with you. Antihistamines are on the list of things that have helped me - especially wrt. food intolerances - MSG is a complete no-no. Quercetin can be helpful too for allergic response .. but can prevent iron absorption so I just take it when required. I also believe that fatty acids are absolutely crucial. My family have a real mixed bag of autoimmune illnesses and what are traditionally considered mental health issues e.g. dementia, but I'm convinced the root cause is in our DNA which gets 'woken up' by things like radiotherapy, viral illnesses and extreme stressors such as bereavement. Also, I suspect, we're all pretty bad 'absorbers' of nutrients, especially b12.

2 likes
Reply

Hi HLAB35, do you take Antihistamines all the time?

I actually remember the time frame when I started not feeling myself. I was 17 and I woke up in so much pain, a few days past and things weren't getting any better, my friend ended up taking me into the ER and they found I had a ruptured ovarian cyst. It's a bit hazy but my friend told me afterwards I kept having confusion episodes while waiting in the waiting room, having no idea why I was there. Even a few weeks after the pain and everything had gone I now also remember waking up in the middle of the night having no idea where I was. I feel like that was the "trigger" for everything I am going through now.

Reply

No, I don't, not now... but remember having a very inflamed, lumpy throat, tongue and neck and sore mouth that lasted for about a month and they helped a lot then.. I think it may have been a big Hashi's flare, but at the time it was just a hunch based on previous food intolerances and I wasn't under any supervision, so I can't say that they'll necessarily work for Hashi's flare ups, because I don't have the bloods to prove it - I was under a lot of stress at the time and quite frankly couldn't be doing with going to the GP who'd have probably prescribed anti-depressants!

Also, when I've had viruses I can get an 'allergic reaction' to the virus with similar symptoms to the above and an antihistamine can help. It's a bit weird and I wish I understood it better!

Ovarian issues are pretty common - endometriosis is another problem. I found that having good vitamin D levels along with vitamin k2 helps a lot. The benefits of these two 'vitamins' is little understood, but realise that having upper range for vitamin D has massively improved my resilience to both stress and illness and, of course, vitamin D is vital to good thyroid / adrenal health.

Reply

Hi Learner1, thank you so much for the information, it's all very interesting! I'm sure it would have taken you awhile to acquire all of that knowledge.

It's so much to take in. First I was told nothing was wrong with me, then years later was told I had problems with my thyroid, years after that was told nothing was wrong now I am being told I have CFS. It's just all such a rollercoaster! At this point I personally believe I probably have both, but I could be wrong.

I get unbelievable sugar cravings. As I said before I have given up gluten and processed foods, which of course include sugar. I think I get the cravings more when I am feeling very very fatigued. I know I have to ignore them because I don't want a sugar high because I know I will crash a little while after consuming it. I know it's random but I just wanted to add that in because it's been really bad today.

I'll do a bit of research unto CFS here in Australia too. I just have to take it slow because I tend to get stressed a little if I rush things and try to focus on it too much. It can get a bit overwhelming.

Reply

I totally agree, the approach to ME is disgraceful in the UK and terribly underfunded. Having had this illness plus thyroid, autoimmune and many other diagnosed conditions for well over twenty years I have encountered a vast number of doctors/consultants/therapists etc.. in my search for answers. This has included a lot of money spent on nutritionists/alternative practitioners. Unfortunately gluten free and many versions of different diets have made no difference.

There are no simple answers for those of us with complex conditions, and everyone will respond to different things. But it is good there are more resources now than there used to be, and doctors are a little less ignorant. So there is hope going forwards.

Reply

Many of us with ME/CFS also have mast cell activation syndrome, which can cause food intolerances and reactions to just about anything. Testing includes histamine, tryptase, prostaglandin D2, and chromagranin A. Dr. Lawrence Afrin is the top expert - you can Google and find his papers and presrntations.

I was able to keep mine in check with folate, vitamins B12, B5, and C, as well as curcumin and boswellia. It flared up with IVIG treatment, and I had to add H1 and H2 antihistamines. Quercetin and rutin are good, too.

ME/CFS is currently thought to be an autoimmune disease, set off many times by a virus, like Epstein Barr, etc. Many of us have tested positive for adrenergic, muscarinic, GAD65, NMDA and other weird antibodies. Treatment can include high dose IVIG or monoclonal antibodies.

As my doctor, a top specialist, says, if you have one autoimmune disease (like Hashimoto's) you tend to collect them, especially if you have a genetic tendency.

Many of us have underactive immune systems, too, as well as hidden chronic infections, so immunosuppressants aren't the best idea.

In any case, stabilizing adrenal and thyroid hormones is part of the foundation for treatment.

2 likes
Reply

I do tend to get any sickness that it going around and when I do get sick it's always very bad. I don't even remember getting pneumonia, as far as I was concerned I had never had it. But I must have at some point and just thought it was a normal cold as I always get them so bad and they can last for weeks and I can even feel the effects longer at times. So I know that my immune system must be very low.

Reply

Hi Claire,

A few things that might help based on what you've said.

1) Research has found many of us have a problem with pyruvate dehydrogenase, so carbohydrates don't properly get converted to energy. A low carb/ketogenic diet has been suggested and many of us are finding helps.

2) A subset of us have low immunoglobulins, treatable with intravenous immunoglobulins. People with this situation aren't able to high infections well, and many times, though they don't feel sick (as their immune system is too weak) they still have viruses or bacterial infections harming them. Asking to have your immunoglobulins tested with subclasses would be a next step, as well as getting tested for multiple hlcommin viruses like herpes family (Epstein Barr, cytomegalovirus, HHV6, HSV, zoster), Ross River virus and anything else comm9n in Australia. Antivirals, antibiotics, and low dose naltrexone have helped many patients.

3) As mentioned below, the illness can throw all types of hormones off. Sounds like KNRHOVE65 was lucky that was her only problem (it doesn't sound like she actually had ME/CFS), but most patients with ME/CFS do have thyroid, adrenal, and sec hormone issues. Having them all tested and getting them to a normal state is a foundation for getting well. (I take T3, T4, hydrocortisone, DHEA, pregnenolone, and testosterone) which have helped my functioning tremendously though they were not a cure.)

4) Metabolomics research has found abnormalities like deficiencies of B2, B12, amino acids, and sphingolipids. Having a comprehensive nutrient test to identify and replenish deficiencies can help a lot.

5) Mitochondrial dysfunction is a hallmark of this disease. You might Google chronic fatigue and Sarah Myhill. Garth Nicolson, Robert Naviaux, and Morris and Maes and start reading.

6) Researchers have linked leaky gut and microbiome imbalance to ME/CFS as well as SIBO.Doing a SIBO and stool test and using the results to rebalance your microbiome can help a lot.

See if you can find the clinic in Melbourne that researchers Chris Armstrong and Neil McGregor work at. Its supposed to be the best in Australia.

Good luck! Be persistent at getting answers and patient. This is a difficult disease.

1 like
Reply

Hi Claire1992

I had CFS and hypothyroidism for many years.. and my Gps kept prescribing anti depressants and levothroxine !!

The Medical profession won't acknowledge it but CFS is actually low adrenal gland function ( they have no pharmaceutical drug to prescibe so blatantly deny hypoadrenalism exists) the thyroid and adrenals work hand in hand and both need to be treated to recover.

You can read my account of my journey ( written 7 months ago ) it's worth a read!!

I dont take any pharmaceutical drugs prescribed by Doctors anymore and I've now recovered and have a healthy life within the same year..

This time last year I was totally alone.. and virtually bedridden.. Today I'm running a business and socialising with friends..

the symptoms you describe are no longer in my life .. You can recover you just have to have the guts to ignore the medical profession and start on a journey of your own .. lead by you and with the right health supplements

Good luck

Reply

Hi KNRHOVE65, Thank you for your kind words and encouragement! It truly means a lot. I am so glad that you are feeling so much better!

Reply

my post tells you the natural hormone replacement supplements I'm now taking

Reply

You may also like...