Thyroid. Chronic fatigue

[Wilson10]

Hi. I have CfS and Hypothyroidism struggle daily.

[greygoose]

The CFS is probably due to under medication for your hypothyroidism. Do you have any blood test results you can show us?

[johnnyxs]

blimey Wilson thats very little information to go on !

I have suffered chronic fatigue myself for about 9 years and always assumed that it was due to my Hypothyroidism . However since being diagnosed with Type 2 Diabetes and Adrenal fatigue I'm now inclined to believe it was due to stress all the time. Psychological...Physiological ...both ...? I don't know

I requested a test of serum Cortisol and sure enough it came back positive.

Have a read of this site its quite informative

adrenalfatiguesolution.com/...

[Curlybob in reply to johnnyxs]

Hummmm... I have currently got the diagnoses of CFS or ME.. I just don't believe that it exists , I think it's just a lazy diagnoses to leave you to rot. I am doing my own research and wonder if I have adrenal fatigue or hypothyroidism. Is it best to go private for any tests.? If so where?? If anyone could help that would be amazing!!

[Marz in reply to Curlybob]

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

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

The second link does the 24 Hour Saliva Testing. The first link for complete thyroid profile plus more - Thyroid 11 I think. All can be done at home.

[sulamaye in reply to Curlybob]

It exists. It may have multiple causes, may have multiple triggers in different people but it isn't just hypothyroidism.

I've been hypo since 1994, on t4 t3 combo. Have had m.e since 2011, post operative. Have addressed hypo in every combination possible, take hydrocortisone etc, still have m.e still spend 50 % of day in bed.

My partner had it for sixteen years before I met her. She slowly and unpredictable made a full recovery, having lost sixteen years of her life. Never took thyroxine.

The body is being stressed by something and that will effect the way thyroxine and cortisol and mitochondria function, but having spent over five years doing everything possible to recover I see this as a symptom of whatever is wrong. In my case perhaps bacteria living in biofilms from septaecimia after the body was weakened by multiple major operations. However, whatever it is there is no simple straight forward cure, that's how you know when you have m.e and not hypothyroidism of addisons or simply stressed adrenals or all the other hopes one has for a cure.

Being t3 only split into three doses with HC is definitely the best for my body since getting m.e but it's not curing me.

[Polaris in reply to Curlybob]

ME/CFS could be the result of B12 deficiency and usually has the same symptoms that are often very subtle, take years to manifest and, usually the result of an inability to absorb B12 through the small intestine for diverse reasons, coeliac disease, a family history of Pernicious Anaemia or other autoimmune disease.

This is what Martyn Hooper, chairman of the PAS, alked about in the House of Lords in June of last year:

"Many of the members of the Pernicious Anaemia Society were originally told that they had CFS/ME because their tests results came back showing no B12 Deficiency and No Intrinsic Factor Antibodies. The new guidelines state quite categorically that the current serum B12 test should be ignored if the patient has all or some of the symptoms of Pernicious Anaemia and the patient should be treated using replacement therapy injections of B12. Likewise, just because a patient’s blood work didn’t show any intrinsic factor antibodies doesn’t mean that he or she doesn’t have Pernicious Anaemia rather the patient could have negative antibody pernicious anaemia – NABPA.

We know that very few GPs have read the new guidelines so just how many people whose blood tests indicated nothing wrong were then told that their symptoms were due to CFS/ME? Probably many thousands..."

b12deficiency.info/misdiagn...

ncbi.nlm.nih.gov/pubmed/259...

drmyhill.co.uk/wiki/B12_-_r...

[Wilson10 in reply to johnnyxs]

Crashed this weekend so very tired will try to get more info 😥

[Redditch]

I have Hashimoto I had give months off work and only awake for a couple of hours a day, then I got my meds right and did a full time stressful job for four years. Don't be defined by this. It's a bad patch, it's not the best you can be. Beat your doctor's door down. Ask for a referral and increase or change your meds. They won't do it for you. Read Dr Barry Durant Peatfield book learn about your condition and take courage from the fact that loads of us have done it and we're all here to help.

[VickyWhitlock]

Hi, I also have a diagnoses of CFS or ME and Hasimotos. I think the docs don't know what's going on and so just give it a label. My Levo is at the correct level and it hit me like a sack of potatoes. But there are so many strands to what makes you feel rough, and they seem to be different for everyone I've met. What has worked for me is stopping all gluten. Also treating stress, I am learning meditation and management of my own stress responses (this is a completely new thing for me!). Refined sugar definitely impacts. Also, follow as far as you can the advice for ME in terms of not fighting it, as far as possible having rests when you need them etc. I have gone from not functioning at all (hard with a four yr old and your own business to run!) to being able to work most of a day and deal with my son. What I can't do yet is go out much, or be up later than 9 latest. If I over exert myself I will feel it for the next two or three days. But you can make a difference if you accept your life has to change for a while, and don't waste your energy grabbing after your old life. Be calm about each day and remember that it will pass. It's taken me six months to get this far, but everyone tells me I''m definitely getting closer to how I used to be. If it's a rough day, it will pass. If it's a good day, it will pass too! Be kind to yourself. All sounds very airy fairy but it works.

[sulamaye in reply to VickyWhitlock]

Wow that's brilliant progress for six months. I still can't do what you can after five years and I've been there got the t shirt when it comes to all the methods you use and more.

This is where I start to think people have very different things going on, as well as some people just do everything that is bad for them and can't seem to see/ address their lives properly. Long may it continue for you though, good luck.

[PercyP]

CFS is a proper diagnosis. Though the diagnosis is difficult at the moment. They have found brain differences and blood markers in studies for cfs now and are very close to using one of them as a standardised test. I recommend joining Dr. Myhill's facebook group (it is brilliant, the best group i know), and getting her book on cfs. If you wait til November there is a more user friendly edition about to be released which tries to make it as easy to read/ understand as possible due to the brain fog we struggle with. There are things you can do, but you have to take your health into your own hands, and stop relying on other doctors. The book, and the people in the group, can help a great deal. There is lots of free information on her website too.

[Wilson10 in reply to PercyP]

Than you so much x

[Howard39]

Yes PercyP is spot on. She is amazing and the web pages are v user friendly. She is the best all round Doctor I have come across.

She has 8k patients who do have thyroid adrenal leaky gut syndrome to name just a few. Whilst Dr M is not taking new patients she does allow blood tests etc to be done.

Many suffers of ME had glandular fever which triggered the illness- this is recognised in Germany now. Again this can be addressed.

The condition is a multi layer one you have to be prepared to peal back layers to find out causes just like the fab people on here have had to do with the thyroid issues etc.

Be prepared like PercyP said to overhaul your life if you want a better future.

If you have any more detailed info we will help you all we can.

[Howard39 in reply to Howard39]

I apologise CfS.

[Howard39 in reply to Howard39]

And well done Vicky.

Amazing recovery and mind set.

[janeb15]

Hello,

I am genuinely sorry to hear of your problems, and can fully empathise.

For many years doctors were lazy and used the umbrella term "CFS/ME" when they didn't know what to do about chronic fatigue and couldn't be bothered to find answers for the patient. Sadly this negligence does still exist in most quarters. The truth is that if you have chronic fatigue there is a reason for it, but most doctors in the UK don't even know where to look for those answers. For many years my daughter searched for answers to her chronic fatigue problem, the NHS gave up on her and then we wrongly assumed that she had a thyroid/adrenal problem and vit/min deficiencies as did ALL of the private thyroid doctors she saw both in the UK and Europe. It wasn't until she saw a brilliant doctor in the USA (one of many doctors over there who are prepared to think outside the box) that we discovered the true cause of her prolonged problems, and he put her on the road to recovery after 20+ years of looking.

In many cases, as in my daughter's case, it is inflammation causing thyroid deficiency along with countless other symptoms. This inflammation has many causes which the knowledgeable US doctors can identify. My daughter's life has undoubtedly been saved by her US doctor - she was going rapidly downhill before she saw him - and she is now markedly recovered. If you want me to send you info I'll gladly do so - just send me a PM. Jane x x

[vkg1 in reply to janeb15]

Hello, would you mind sharing a little about what the treatment was that worked for her? I know every individual is unique, but am still very interested. Thanks for sharing her story.

[janeb15 in reply to vkg1]

I have a lot of information that would take up pages of space on here so I'll send you a private message. x x

[Beckid65 in reply to janeb15]

Can you send me the Dr's name?

[Curlybob in reply to janeb15]

Hi Jane, thank you so much for you're really interesting mail. I would love to know more about what you found. A lot of people think it may be long term Lyme disease that is the problem with ME but I'm just all topsy turvy about it all. If you wouldn't mind sending me an email I would be very grateful. Many thanks.

[e-mail]

[dannyboy86 in reply to janeb15]

Please can you PM these details

Thanks

[Learner1]

I have CFS and Hashimitos as well. Be aware of work of the US Institute of Medicine Task Force on CFS/Fibromyalgia. Google IOM CFS.

It's multi factorial. The thyroid isn't working because the mitochondria have been slammed by stressors. Look into Robert Naviaux's papers on cell danger response and on CFS. Look into Martin Pall's paper on high dose vitamin C, folic acid and B12 - Linus Pauling was Right for the Wrong Reasons. And Garth Nicholson's work on lipid replacement therapy. And Maes on oxidative and nitrosative stress. And Thomas Seyfrieds paper on the metabolic theory of cancer - a lot of CFS people get cancer, and his theory is important especially when you read the other works I've referenced. All of this is very recent science and hasn't sifted down to mainstream clinical practice yet.

And then there are chronic viral and bacterial infections that most of us carry around and can get reactivated at a low level, damaging membranes. And toxicities like organophosphates andcheavy metals.

I've been whacking away at the above and am making some headway - my thyroid started to work all of a sudden this week and I've seen it happen to others.

The gameplan for me is supporting my immune system and mitochondrial membranes with an organic Paleo diet, nutritional supplements, lipid replenishment, careful exercise, hormonal support, getting rid of toxicity and killing a few nasty bugs. It's been a frustrating and painful process, but I am making progress and heading toward being a normal functioning person.

In addition to Sarah Myhill, Charles J Forsythe in Surrey has a good discussion of the hit list of problems that contribute to chronic fatigue - I have several, and many of you do, too, I'd imagine. One caveat - all the things he lists cause CFS/fibromyalgia according to the newer IOM definition, rather than the older view he repeats - that CFS is something BESIDES the stuff on the his list. It's not - theyre one in the same. He also discusses testing - I've found my test results match the theories in the scientific works I mentioned above.

It takes patience and persistence, but there are answers.

Good luck!

[janeb15 in reply to Learner1]

I absolutely agree about bacterial and viral infections. Such infections can be chronic, but sadly UK doctors do not recognise this fact. Neither do they recognise chronic mycotoxin or candida infections, or mast cell problems or the huge importance of correct methylation. It's an outrage that so many people have to travel to the USA for help. Jane x

[atwitssend]

Have you been checked for celiac disease or sensitivity ? That was my problem for years before I had an endoscopy and colonoscopy followed by the blood test

[satu55555]

If you have CFS and thyroid issues, I would recommend a functional medicine practitioner who is specialized in these.

[stockman27]

HI

Just a couple of things.

The general Medical clinicians cannot agree with the diagnosis of CFS so putting it bluntly you may have problems finding a Dr GP to treat you. (

About me,

I have no thyroid its was removed surgically in 1999, since then its been a torture. What is annoying that I find a treatment that works for a year of two then its all goes wrong and I end up very fatigued and short of breath, cramps a coldness.

The first indication I have of things going wrong is dry skin patches on my chest then this wretched cold , my skin in warm on the out side and but you feel a shiver on the inside.)

So How does this help you?. What I am trying to do is meet your expectations, as there is no easy fix.

Question,

Have you been diagnosed with a thyroid problem? If not I am afraid you will treated for depression as this is the standard NHS guideline.

IF yes are you bloods rights i.e. a full Thyroid profile of T3 T4 and TSH, again if your bloods are ok then you will be treated for depression as this is standard NHS guidelines.

That’s about as far as you go on the NHS.

Private drs.

My word of caution here is money here, they are expensive, let me say that again, they are expensive.

The will test you for everything, a full Thyroid profile and thyroid antibodies.

Natural hormone like armour is a good way to start but to be honest , you really need to get your adrenals tested. These little glands at the tip of your kidneys carry the Thyroxin around the body and if they are low then you body will not be receiving the thyroxin and you will get symptoms of hypo when all your bloods are fine

Now before you get excited the NHS does not recognize low adrenal’s generally, so in most cases you cannot count of your GP, there are exceptions of course.

You could try and get a blood test for DHEA-s that is a very good indicator of adrenal stress and its not too expensive. Low progesterone is another one but being a man I do not know much about this.

I remember when I got my DHEAs tests back my results were so low but the treating dr said you have two problems low DHEA and where do you find a DR to treat you.

Be warned its very easy to over dose on thyroxin but that’s just is not the answer, if you are, then something else is wrong.

Insulin resistance is another blood test and that will be treated on the NHS but by an endo. To much insulin in the blood kills Thyroxin.

I saw a professor and the president of CFS society in the UK.

He diagnosed

High doses of CQ10

Vitamin b12 and a NADH, This was a professor and endo, and still my GP wasn’t happy about the diagnosis and said its depression. but nothing really worked until I went on a high does of pregnenolone and NDT (Armour). I am now back on DHEA and a smaller dose of NDT and NHS t4 but I have developed an Itch not but that is another story.

In summary firstly don’t give up.

Be a Detective and look at your bloods.

Get your adrenals checked out but caution if you do go and get these tested privately, do not expect you GP to do anything.

Take CQ10

100MG in the morning and 100 MG at night, Its harmless. Cross of what it might be, i.e. Insulin resistance,( a good indication of this is night hunger and you have a yearning to eat between 9-11pm.

Ah yes a good indication of adrenal problems, I nearly forgot about this one.

1 you don’t sweat, I mean you don’t sweat.

2 You start to feel better just after your last meal.

There is a good book by Dr Peatfield, I am not sure if its still in print but it will give you the basic facts of your thyroid illness.

Good luck.

John C

[Learner1 in reply to stockman27]

For hormones, take a look at the DUTCH test (dried urine test of comprehensive hormones). They have some great little videos on their website. The test is about $350 US and it can be done easily by mail. The only rub is getting a doctor to order it for you. But get info off their website and share with your doctor and try...it was recently discussed on Dr. Mercola's website, too.

Its been a vast improvement over any other hormone test, and helped me tweak hormones to function safely after a radical hysterectomy and cancer treatment.

My doc has me on pregnenolone, progesterone, hydrocortisone, DHEA, and small amounts of testosterone and estriol, all managed with this test. Otherwise, I'd be a mess.

[PercyP]

Dr. Peatfield's book is Your Thyroid and how to Treat it. It is great. Very helpful