Would really value any advice on what to do next i.e. should I get my own blood tests done, which ones to pick etc. I felt like I finally got some answers in Dr Sarah Myhill's book 'Chronic Fatigue Syndrome' only to be kicked back under by the pretty much certainty that her waiting list will never open again. Below is a general overview of my current situation
My GP believes that I could have CFS - as she puts it, it is a diagnosis of exclusion - and she has done in the region of 10-15 blood tests on me. I feel like there isn't anymore avenues we can go down and it is always an upwards battle of me fighting for her help and not the other way around - but thats a whole other matter.
I would say that it is highly likely that I have suffered with a very mild form of this all my life as I always tired quickly and would try to get away from social events - not because of anxiety but more of energy levels. However about 5 years ago the ante was upped and since then I have not felt 'normal' I knew something was up but tried to battle through. Over the course of this I was put on all different SSRI's and attended counselling and CBT but never thought there was anything wrong with my head despite being told to the contrary by people. I was almost diagnosed with Bipolar Disorder twice.
In September 2015 I moved to Manchester, feeling pretty upbeat to start a new education course and wasn't taking any prescription drugs. However I started getting what seemed like panic attacks daily and ended up at the doctors again and due to the severity of these attacks was 'very all over the place' mentally and despite telling the doctor repeatably I didn't want to go on SSRI's again, I ended up on 25mg of Sertraline which was quickly pushed up to 100mg. From then on my body just gave in completely I was having Lactic acid like pains all over and couldn't leave bed. I have fatigue that usually renders even checking my e-mails to much of an energy draw, alongside the usual suspects of poor vision, tinnitus etc.
Then I stumbled across Dr. Myhill's book and everything started to make sense, so I started supplementing D-ribose, Q10, L Carnitine, Ionic Magnesium, Betaine HCL, Vit C (ascorbic Acid), B12. and since then (and including a cup of fresh coffee or two a day) I have seen for the first time in 5 years a few hours and some times a day of 'normal' health. which would indicate that I am making real progress!! However I am now at a stage that I still do go right down to not being able to talk, muscle pains and facial spasms but the contrast a speed of degradation is making life very difficult. It is heart wrenching at times thinking you are better then it being stolen for what I can see as no real reason - I have tried each supplement individually to see if one is a 'magic cure' but it seems that it is a complex combination that is helping me.
It is also worth noting that in March 2015 I went vegan to try and improve my general health and stuck to a high carb low fat diet, mainly fruit and cut out caffeine pretty much all together (despite being a heavy tea drinker since a very young age). I also used to ride about 250 miles a week on my push bike as I quit my job and found it enjoyable.
I really will appreciate any feedback whatsoever,
Sam
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sambirch19
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That would be "a group of symptoms" not "a symptom". Fatigue is only one of the symptoms of CFS/M.E. Also it is what Doctors call a "diagnosis of exclusion" generally, when they don't know where to go with your group of symptoms. (Or what to do).
Welcome to our forum and sorry to hear of your health troubles.
If you post any blood test results complete with ranges (numbers in brackets) members will comment. Have you had thyroid function tests carried out ? Have you had sex hormones tested ?
Low thyroid hormone can present in many different ways including depression, mental health and even bipolar as the thyroid gland helps regulate the neurotransmitters (chemical messengers) that your brain uses to communicate with your nerves.
A neurotransmitter is a secreted chemical that's binds to a receptor on another neutron. Imbalances can be caused by thyroid hormone (or other) deficiency, blood sugar imbalances, gluten intolerance, heavy metal toxicity, chronic stress (causing elevated cortisol levels).
The main building block for the neurotransmitter serotonin and for thyroid hormone (both T3 and T4) is the amino acid tryptophan also needed for the neurotransmitter noradrenaline which stabilizes mood and anxiety ( opposite to adrenaline).
This means that low thyroid function could deplete serotonin and other mood-stabilizing neurotransmitters. Chronic depression and sadness can also deplete tyrosine stores and T3, both necessary to maintain healthy mood and energy so it becomes a vicious circle.
Antidepressants can have a negative effect on thyroid function by altering the function of the HTP axis and inhibiting T4-T3 conversion.
Have you been tested for gut issues such as H.Pylori, Candida or paradites ?
A doctors stool test is not comprehensive enough. I used Genova Comprehensive Parasitology gastrointestinal stool test.
Flower
Thyroid & Mental Health (many further links & references)
Disclaimer: I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.
Do post your thyroid results - as suggested - many people here will be along to help. Have you been tested for the Auto-immune condition - Hashimotos ?
You also need good levels of B12 - VitD - Ferritin - Folate. Docs rarely test for these unless requested as they are not included in the FBC - full Blood count. Yes they need to be optimal and not just in range.
In addition to the excellect advice and information already given, one thing to bear in mind is that people with ME/CFS should not have a low fat diet. Dr Myhill identified this in me when I saw her yonks ago. The brain, made up of fat cells, needs fat to function - the right kind of fat though. She advocates coconut oil (it's poss to buy oil that doesn't taste of coconut). The lack of fat in the diet can lead to problems with depression and even aggression.
Also, Dr Myhill states that thyroid problems are implicated as someone with ME typically has high TSH (and by this she means over 3.0 or even 2.5, not the 'normal' upper range) and low FT3 (again, usually within 'normal' range). This is certainly the case with me, but I - and thousands of others with the illness - am stymied by the NHS because of the straitjacket mentality that only accepts TSH as the standard test that governs diagnosis. In fact, there is an argument that ME/CFS is undiagnosed hypothyroidism, if only sense would prevail in the medical profession. There has been a massive rise in the illness since the 1970s when the TSH diagnostic perameters were established.
I think I made my health worse by going Vegan. I piled on weight, & felt even more unhealthy. Just the opposite of what I expected, & despite what vegan friends' insisted. A low fat, low carb diet issn't good for me, especially as the >500mls of daily soya milk, & tofu 4 days a week along with raw cruciferous veg, probably worsened my symptoms. Any processed soya caused mouth ulcers in 30 minutes, which is a clear sign to avoid the stuff.
I've gone back to being veggie, aside from NDT which reduced my FM symptoms. I eat a clean diet with as much organic produce as possible, lots of nuts, kefir for B12, & cook with rice bran or coconut oils which are not inflammatory.
Thanks Leverette! can't say I have put any weight on but a lot of family members are stressing me out by saying its being vegan and although I am not ruling it out I do believe that there is more to it than not eating animal products
Your girlfriend doesn't have your genetic make-up.
A vegan friend insisted I would loose weight if I ate exactly what she did, ie, high carbs, & the type of processed soya c**p that gives me ulcers. Being hypo, it's the worst thing i could have done, second only to replacing all dairy with soya, causing massive D deficiency, unbearable fatigue, brain fog & developing FM.
Trying a vegan diet is fine if you feel healthy, or put ethics over health, but the pressure to stay that way if it doesn't suit you is not!
I feel much better for going back to eating veggie, especially after introducing dairy kefir for natural B12, rather than taking cyanocobalumin, that's in most B12 supplements, even Engervita. Iron tabs aside, I prefer my nutrients as food, though I've just ordered some vegan liquid amino acids to try, having given up tamari & miso, but I'm not sure how natural it is.
We have to try these things to see if it will help. I wish I'd realised it wasn't before my health worsened, & listened to the "healthy food labels" & guilt trips rather than common sense.
People are very often diagnosed with CFS (which is a diagnosis of exclusion, as you say) when they really have hormonal problems. Dr Myhill too mentions in her book that hormones play a role. So my question is, have you had yourself properly checked out in this direction? You need to check growth hormone, ACTH, LH/FSH, and TSH. Testing isn't simple, and doctors often fob you off with a short synacthen test which is supposed to detect growth hormone and ACTH deficiency but hardly ever does, so do read up about hypopituitarism before you do anything.
Pituitary damage is often caused by head injury (even concussion) but there are many other causes - exposure to organophosphates, faulty genes, stroke etc etc. Read dailym.ai/1TypY9u or my website headinjuryhypo.org.uk
The best of luck if you decide to go down this avenue, you need to be persistent as doctors are generally not receptive. Arm yourself with the research!
A high carb, low fat vegan diet sounds like a nightmare diet to me. In order to absorb fat-soluble vitamins you need fat. Your brain is made up of 60% fat, of which 25% is cholesterol. You need fat and cholesterol to survive.
A high carb, low fat diet also sounds like a sure-fire way to develop type 2 diabetes. All the carbs end up converting to glucose, and the body produces insulin to deal with it. Produce lots of insulin for a long enough time and you'll end up with insulin resistance.
I am just getting my GP surgery to print out a list of the blood tests I've had done, then will post them - thanks everyone so far, every comment is much appreciated
I have had underactive thyroid for about 14 years ,for the last 4 years been told by GP I had CFS .Only as none of them knew what was wrong ,eventually after lots of persistence diagnosed myself with PMR which GP had to agree with .
Along with a increase of Thyroxine treatment for PMR and good supply of vitamins I am now back to work and feeling much better.
Please if nothing else be aware that lots of illnesses mimic CFS but don't be fobbed of with this diagnoses .
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