Hi everyone. This site looks amazing, and I can see I’m at the beginning of a steep learning curve. So I shall try to keep this simple.
My husband has had a diagnosis of chronic fatigue syndrome (CFS) for about 10 years. He suffers brain fog that gets worse with processing tasks so for now I’m here to speak on his behalf while he cooks dinner which is less exhausting for him. I hope that’s okay with you, we’re pretty much a team. I’ve just slipped across from the AF forum!
He is making an appointment with his GP to review the situation so we need to go armed with the right questions. I’ll be there as back up. And if the GP can’t provide the thorough investigation and answers we need then we need to find an alternative route. So we want to look into the possibility that maybe his thyroid is in some way involved.
There may be a genetic element. His mother suffered a protracted period of hypothyroidism throughout the 1950s and 60s while bringing up the 3 children. This was misdiagnosed (neurosis, depression etc.) until she was really on deaths door. Fortunately she made a remarkable recovery after thyroxine replacement and she lived to 100 and outshone us all in intellect, energy and wit.
Although my husband has been tested for thyroid issues in the past he has never had a detailed list of results. I have heard that tests may not be entirely accurate, that more in-depth tests are available and that different countries go by different readings. A brief exploration of this site suggests the whole thing is a bit of a minefield! So where to begin? I know we should have explored this sooner.
I’d be really grateful for any pointers, reading material, links to help get us started. And of course the dos and don’ts for approaching a thorough investigation.
With thanks
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Rainfern
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Thank you so much SlowDragon, we shall be reading through this over the next day or two, and more! I think we can make that appointment with confidence now and meanwhile check out the bloods data. It does look as if a private test will get the clearest results and as CFS is such a fudgy thing already, clarity is what we need.
The trigger for the CFS was a virus - flu that was heading for sepsis - and probably getting back to work too soon. He had support from a local CFS unit (NHS) with the usual CBT but fortunately not graded activities which is now known to make things a lot worse. He had to retire early though.
I was only on amiodorone for a few months prior to a cardioversion- I need to update my bio!
Really interested in you asking about bumps on head etc. I had a cycle accident and landed on my head. Took me 4 years to get out of being continually tired and being told to rest and that is what happens when you are old. In the last 12 months I have been fixing my thyroid and got my adhd diagnosis - it does seem that head injury can make it worse. Just interested why you asked that question?
Thank you its very interesting. I mentioned several times to the head injury psychologist that my injuries could be directly influencing my executive function or other areas and it was continually dismissed. Now where is that time machine....
The problem is not so much with the tests, as with the medics ability to analyse them correctly. They are often too quick to say "normal" when the person's results are far from optimal!
"Normal" means very little, other than the lab result result/number sits somewhere in the reference range...what is vital is to establish the exact point within the range where symptoms resolve.
"Normal" will most likely leave the patient with symptoms and feeling unwell ...possibly in several ways.
Your husband is entitled to request copies of any results...ask at reception. I'd suggest you obtain these and post them here for advice before seeing a GP.
However he really needs a full thyroid test to include...
TSH, FT4, FT3, Vit D, vit B12, folate, ferritin and thyroid antibodies TPO and Tg.
As for CFS it's a syndrome- a collection of symptoms - it is not a disease....more of a bucket diagnosis when GPs are lost for ideas.
The symptoms very often connect to hypothyroidism
I was diagnosed with both CFS and FMS before I started "digging" with the help of this forum. I was also hypothyroid....and it turned out wrongly medicated.. Long story but I eventually discovered that I have a very rare thyroid condition....and how to treat it
We can have a thyroid genetic test ( I did) which shows if the patient has a Dio2 polymorphism which can/might affect T4 to T3 conversion. The impairment is greater if the variant is homozygous. It may or not be useful because we can establish rate of conversion by comparing FT4 with FT3....high FT4 with low FT3
Your husband has no doubt been diagnosed by TSH, perhaps also FT4. TSH is not a reliable marker, it fluctuates during the day for one thing.
FT3 is an essential test ...Why? T3 is the active thyroid hormone which must be available in a constant and adequate supply. It needs to flood every cell in the body and reach the T3 receptors in the nuclei so the body then benefits The body converts T4 to T3 but for some people this conversion is poor....but more later if this is discovered
Sorry....this is turning into a rant but I hope it helps a little.
To my mind conditions like CFS and Fibro are real and very disabling, but they should only be diagnosed once everything else like thyroid, vitamin and mineral deficiencies have been ruled out.
I believe doctors are far too quick to label patients with these conditions before anything else has been excluded. Its easy for them, its gets you out of the door and once so labelled everything thats ever wrong with you will be blamed on that. I speak from experience as I was diagnosed with Fibro 16 years ago.
With the current research into post viral infections like Long Covid I hope that there will be better treatments and maybe even a cure one day for these horrible conditions.
Yes CFS is very real, though it took the medical profession years to recognise it as such. At same time I’ve had the feeling that everything in the past 10 years of my husbands condition has been shoved under the same CFS heading and it’s time to break away and get some answers!
Yes I've always joked that having CFS or Fibro is like Pandora's box, everything bad gets blamed on it.
Apparently Fibro is responsible for the extinction of the dinosaurs and the sinking of the Titanic ! Its gob smacking how so much that ever ails you is down to one condition/ sarc.
Thyroid Issues can be a health roller coaster which impacts your whole life, but it doesn't have to be. Make sure he isn't Iodine deficient with resulting Reverse T3. Many of us have been, but for some reason it is broadly ignored. Also get all soy out of both your diets. The is a great site agutsygirl.com it is a great reference. Keep a hand held note book with the nutrients that most impact thyroid and the signs of too much and too little. Reference this list when you feel "off" . Even keep a food diary! You will become your own expert. Any hormone including thyroid replacements are mighty powerful drugs and should not be taken lightly and can cause health chaos that is not easily corrected. Also become aware of neurotoxins in our foods and avoid those that are major ones. Wish you both well
Thank you! There is obviously so much more to it than the simple test used to eliminate thyroid problems that contributed to my husbands CFS diagnosis. We are starting on a learning journey and it’s so useful to have all these leads.
I was diagnosed with cfs in approx 2019 and fibromyalgia before that. I kept going back to the gp with fatigue and other symptoms of hypo such as reflux and ibs and I even lost the outer edges of my eyebrows, but was always told my results were “normal” so I was subsequently diagnosed with cfs. Over the last year or so things had got much worse - I developed raynaud’s syndrome, severe constipation, aching and fatigue that put me in bed every afternoon. I had strange aches and pains that seemed to migrate around my body and every day there was something else playing up. I also developed severe stabbing pains in my ears. I thought/was told, that it was just cfs and fibro getting worse/flaring up, but decided to get a fingerprick blood test done as my mum had Graves disease and my nan was hypothyroid. The test showed a slightly raised tsh and a low but in range t4. I emailed the gp and she arranged another blood test which showed an even higher tsh so she offered me a trial of levothyroxine. The nhs test showed negative tpo antibodies, but when I did another full thyroid panelof tests with medichecks to check on progress - the gp note on the results stated that I was positive for tg antibodies and that was associated with Hashimotos. Everything I have learnt on this site has made me think that I have actually had autoimmune thryoid disease for a number of years. I read on here that gallbladder disease is related to hypothyroidism and also I think Hashimotos and I had my gallbladder removed in my thirties (now age 54) because of gallstones and severe pain. For me, I think maybe there is an element of cfs, but maybe that’s related to being undiagnosed hypothyroid and hashis for such a long time. I’m still early in the process of finding the right dose, but I have had quite a few good days and a glimpse of what it would be like to feel well as before the levo trial I wasn’t having any good days at all. I’m not there yet, but I have hope that things will get better as some things have already improved on a low-ish dose of levo. I used to have tinnitus every day, but I have only had the occasional very short, mild episode since starting levo. I’ve also had quite a few days where I haven’t had to go to bed in the afternoon. I just thought I would share some of my experiences as it might be helpful. Best wishes to you both.
Thank you so much JoJo. That’s so helpful and gives us hope that some improvement may be possible to the tiredness and brain fog and tinnitus and ibs and all of it! The big thing I’m facing now is why on earth didn’t I hunt out this forum sooner??
I hope that you find the just-right balance of meds and that you start having one good day after another. Let us know how it goes!
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