I've just been to the doctors with my blood test results all coming back fine. For the past 6 months ( could be even longer) I've felt really tired. I feel like I'm getting worse and worse and now it's very difficult for me to wake up. I looked on NHS website about Chronic Fatigue Syndrome and felt I had a lot of the symptoms but after reading a few blogs on CFS, I'm not sure anymore.
Over the weekend I helped paint a livingroom and the next day I felt like I'd been hit by a bus, and I couldn't concentrate on much the whole day and talking to people made me feel like I didn't have enough brain power to think of words to say back. I'm still feeling horrendous the day after too.
I wondered if anyone who has it has also had similar symptoms to me?
My symptoms:
Constantly tired no matter how much or how little sleep
Feeling extremely sick at night
Not able to concentrate on tasks
Feeling like I'm not 100% there, feels like 10% of my brain is concentrating on conversations, tasks etc and the other 90% is zoned out.
I've also been feeling short of breath which also seems to make me lose my balance easily
Eye twitching and occassional leg twitches, eyes are very sensitive to sunlight
Feel very cold
Been diagnosed with IBS
If I had to describe my tiredness I'd say it's like wearing a suit made of weights and trying to walk through quick sand or heavy mud.
Written by
Rosmi
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Hi love I suffer cfs and that's just how I describe it like you with weights and quick sand so yes it does sound like it to me there no blood test to confirm love xxx
It did me cause I suffer with thyroid so they kept saying it was that then when it came back that it was controlled they said it was cfs still exhausted all time so going to ask for a b12 test good luck love jill xxx.
Thanks, funnily enough my B12 levels are borderline so I'm on tablets but still feeling horrible. I used to have an overactive thyroid years ago but tests came back all clear. x
Which tablets are you taking ? - and how much ? You need your level to be around 1000 and further testing once on supplements is of little or no value. You will also need a GOOD B Complex to keep all the B's in balance. A result under 500 can be the cause of neurological symptoms - the range in Japan STARTS at 500. Look at the Videos under the heading Films in the link I posted above - watch the Doc who was almost dying - only for them to discover it was B12D.
It is possible that having been overactive with your thyroid - you could have slipped into being under. Were you treated for the over-active thyroid ?
I've been put on Cyanocobalamin 50 MCG which I've to take three times a day for two months. I was diagnosed with over active thyroid when I was 14 and it took me till I was about 16 for it to be normal. I was on roughly 14 tablets a day. In between then it went to underactive. I was also told I had Graves Disease but have no idea if that is something you always have or if it goes once your thyroid is normal.
50mcg is a very small dose. 5000 daily would be more appropriate if you are very low. Also Methylcobalamin is more readily absorbed and Jarrow from Amazon is a good one. You will also need a good B Complex to keep all the B's in balance. NHS use cyanocobalamin as it is cheaper.
It must have been a difficult time for you when you had Graves - which is auto-immune. You will also need to have your Folate - Iron - Ferritin and VitD tested as they are all involved in thyroid activity and all need to be optimal.
I think you should also obtain your blood test results from your GP and post them in a new post - possibly on Thyroid UK here on HU and someone will comment and advise you.
chatterbox69 - do you have any recent blood test results for your thyroid ? Maybe they have not tested correctly or you may need a dose increase. Have a read of my reply to Rosmi below
What does OK mean - you really need the results of the TSH - FT4 and FT3 - with the ranges. The TSH needs to be 1 or under and the FT4 and FT3 need to be in the upper part of the range. Pop across to the Thyroid UK forum here on HU and have a read - don't take my word for it. If the ACTIVE thyroid hormone T3 is low then you will suffer from many symptoms including CFS. Which is just that - a syndrome - so at least ensure your thyroid is optimal.
Having spent 4 years on the forum with almost 40,000 thyroid sufferers you soon learn that Docs know very little about the thyroid and often say all is well when it is far from it.
I don't know if you might find the information on here of use meassociation.org.uk/about/... it describes the various criteria for diagnosis and other conditions that need to be eliminated.
When they did your thyroid bloods did they do the full spectrum of tests or just TSH and T4? You need T3 and rT3 as well. drmalcolmkendrick.org/2015/...
I am wondering if you have copies of your blood test results - you are legally entitled to have them. Don't forget to ensure there are the ranges too - as labs do vary.
One of the conditions that needs to be ruled out with CFS/ME/Fibro is a thyroid problem. Sadly herein lies the problem as they rarely test correctly. Often just the TSH is tested and if it falls within the range you are declared normal - ummm.
TSH is a Pituitary hormone which tells the thyroid to produce T4 - a storage hormone - this then has to convert into the ACTIVE thyroid hormone T3. Also from my experience of many years on the Thyroid Forum - people with CFS have very low T3. Every cell in the body has a receptor for T3 - so if it is low then there is not enough to go around and things begin to go wrong. You may also have thyroid anti-bodies - Hashimotos- which is auto-immune.
In order for thyroid hormones to work correctly you also need good levels of B12 - Ferritin - Folate - Iron - VitD - as they are involved in the conversion process from the T4 into T3. So without these tests being done no GP can say things are fine.
If your GP is unwilling to do the tests required you can have them done privtely with a discount through Thyroid UK. Bundle 11 is a good one to have - see below.
The above link tells you everything you need to know about B12 - and its symptoms can be similar to low thyroid and they so often go together. Am afraid it is all about reading and learning for ourselves as Docs do not have the time to find the ROOT cause of any condition - preferring to treat the symptoms
I am not a medic - but a Hashi's sufferer with a B12 issue. You can click onto my name and read my Profile - the edited version !!
Not exactly sure, but I know that B12 injections have helped with my nerve issues and this may help with some of your issues. Also at one time I was extremely tired all the time and not resting. My doctor ran some test and found out my testosterone level was very low. This has helped getting injections. Also be sure to take vitamins, especially magnesium and potassium.
Hi maybe you need to see the sleep clinic and they might help you might be sleep apnea.
Get a full spectrum blood test. GPs need to rule out everything that crops or could be bothering you before considering CFS/ME. I have an under active thyroid and hashimotos. But my levels are in much better. But I was still complaining of severe fatigue and muscle aches. So a wider blood test cropped up elevated liver function. Stay with the same GP-I saw 4 different ones who insisted in repeating my test. Eventually I had to insist on being referred to a liver specialist. Over the last 6 months my liver and digestion has been fully investigated and they have said they cant explain my fatigue. Now,there is nothing more (id even agreed to anti depressants but felt no different after 7 months so came off them). Working has been hit amd miss.
So here we are 18 monhs after initial GP appointment and Im fjnally being referred for a formal diagnosis of ME/CFS from Oxford John Radcliffe.
Basically to get a diagnisis of CFS/ME they have to rule any other possible cause out-and too be honest wouldnt you rather have that. Id take a pill any day to stop thia fatigue rather then therapy based help and lets see
As you have Hashimotos I am wondering how your levels of B12 - FERRITIN - FOLATE - VITD are. They are often very low in the range and need to be optimal for you to feel well. B12 Deficiency is a neurological condition and not just a vitamin deficiency.
B12 - needs to be around 1000. Ferritin needs to be mid-range as does Folate and VitD needs to be around 100. GP's have little understanding and are happy if you are bumping along the bottom of the range. Check out the signs of B12 Deficiency in the link below .....
I have Hashimotos and have been on the Thyroid UK forum here on HU for over 4 years and have learned a great deal. Getting the vitamins and minerals to good levels enables the Thyroid hormone T4 to work well in the body. We need a FT3 levels that is high in the range to feel well.
If you have some recent blood results I am happy to help. You could always pop a post onto the Thyroid UK HU - as many people there feel that CFS/ME is due to LOW T3. I too was diagnosed with Fibromyalgia which lifted once my thyroid was correctly treated.
I am not a Medic - so click onto my name at the top of this post and you can read my story
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