I have suffered with chronic fatigue syndrome for 16 years and fibromyalgia for 6. There are have been many ups and downs but I have tried to keep informed and to eat and drink healthily. My downfall is not relaxing sufficiently and putting everybody else first! Since developing the CFS sleep has been something I have had to work on as I would be tired in the mornings but not at night. However, I have managed to work most of the time since I've had CFS and recover after some major relapses.
Two years ago, after my sister was diagnosed with under active thyroid with a lot of the same symptoms as me, I looked into it and discovered Thyroid UK. I had often been tested for thyroid but only with a TSH test which was always within range. I asked for a T4 blood test and it was 12 (10-21). The GP said I was borderline and after discussing my family history (one sister with under active thyroid, one sister with the same as me and my father who had all the same symptoms as us but they were never recognised - he developed heart problems and Parkinson's in later life) she agreed to give me a trial of thyroxine. After six months on thyroxine (25mg then 50mg then 75mg) my T4 had gone up to 17 (10-22) and I was feeling much better. I was able to work again and enjoy some social time as well for the first time since developing CFS.
Unfortunately, in the past 6 months I have suffered a lot of stress as my daughter has been very ill and I have been doing far too much looking after her, working and moving house! Why do these things always come together! I have seemed to cope amazingly well but my sleep has gone haywire and I'm not able to get off to sleep, whatever I do, until at least 2am. I don't need to get up until 9 but I never feel I've had enough sleep and that feeling has got worse recently. In the evening I get more awake as the evening goes on and I crave sugary foods late in the evening when I have eaten well all day. I asked my GP for a cortisol blood test suspecting adrenal fatigue. The test showed a high level of cortisol 654 (170-535) which I don't understand. The GP has referred me to an endocrinologist.
A week ago I quite suddenly suffered a viral infection with high temperature, aching body, nausea and dizziness. For a week I have slept almost continually and although the symptoms have gone now I am struggling to do much physically. The GP has booked blood tests for Monday and I wondered if anyone could suggest anything in particular. I'm sure she will have put down full blood count and thyroid.
Thank you very much
Liz
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appalachian49
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I am sorry you are having a rough time at present and have been for the past sixteen years.
I hope your GP will do a thorough thyroid blood test,i.e. a Full Thyroid Function test which consists of TSH, T4, T3, Free T4 and Free T3, plus Vitamin B12, Vit D, iron, ferritin and folate.
Before the blood tests were brought in for the detection of a thyroid gland dysfunction, patients were diagnosed by their clinical symptoms alone and treated. Nowadays, it's the blood tests that are the diagnosis alone. We are then fortunate when/if the TSH rises to an acceptable point, by that time lots problems have/may arisen and given adequate medication.
Thank you for your reply. The labs around here will only do TSH and T4. I've tried to get T3 and the others many times. I'm now in a better position financially having come off benefits and working more hours so I could get them done privately. Vitamin D was 49 (50-80) when it was tested in November so I'm taking a D3 supplement. I also take Vitamin C, magnesium, omega 3 and probiotics.
You should also supplement with selenium ( very necessary for thyroid health) and zinc. For my bones, as well as Vitamin D, I also take vitamin K2. Depending on the type of hypothyroidism you have (not Hashimotos), you should also supplement with iodine. Taking it when you have Hashimotos is a little controversial, but I take two drops a day with no ill effect. If you paint the other type of iodine (not to be taken) that people use for wounds on the inside of your forearm, it will disappear very rapidly. If you are deficient in iodine the body will suck it up within 2 hours. For selenium, you can alternatively eat 3 brazil nots for your daily dose, as these are very rich in selenium.
Have them check you for Hadhimotos disease anti-bodies. If you have that disease you could have leaky gut syndrome which causes inability to absorb certain vitamins in your food. B12 and D are some of the main ones that cause extreme fatigue if you are even a little low. Will also cause insomnia..
Thank you for your reply. I will ask about that. I know I have leaky gut and have been working on that for years! I see a nutritionist and try very hard to eat correct foods for good gut health. I'm definitely much better with less food intolerances. I have recently cut out wheat as a trial and I eat very little dairy -only if I have a pud if I go out for a meal!
If your GP won't test the items mentioned by everyone - could you have them done privately ? If you go to the main Thyroid UK website you can look at the companies that do them and have a discount. As you can see the FT3 test was mentioned in your thread of 2 years ago.
What supplements are you taking ?
Low B12 can be mistaken for Parkinsons in the early stages...
Optimal levels of VitD are needed for all the cells in the body to work efficiently - almost every cell in the body has a receptor for D - and once in the cell it communicates with the DNA.
I was diagnosed with Fibro 15 years ago by a Rheumatologist. Diagnosed with Hashimotos in 2005 at 59. Symptoms have now left me due to following advice given here - lots and lots of reading and learning. Check out my edited Profile
In my non-medical opinion people with Hashimotos seem to suffer with the symptoms of Fibro. So have your anti-bodies tested - Anti-TPO and Anti-Tg. Hashimotos is the MOST common thyroid condition worldwide.
Thank you for your reply, it is appreciated. I haven't had blood tests done privately in the past because I couldn't afford them but now I'm off benefits and working more hours I could do that. I have been pretty good since I've been on the thyroxine (2years) until recently. All my pain has gone although when I press the tender points they are still very painful. I have regular massage and hydrotherapy as the muscles are very tight. I now work in a primary school for 20 hours a week and I get quite a lot of exercise walking up and down the corridors! I run activity groups every lunchtime and coach vaulting one afternoon a week (my all time love) so I've been very happy. I'm not teaching any more so no stress! I've been very tired again and struggling since doing that plus a house move and then my daughter getting ill. In the past I would have had a relapse so thyroxine definitely helping.
I don't have any symptoms of high cortisol -do you understand why that could be high and not low?
I have checked out your profile thanks. It must be wonderful to live in a warm climate. I will try and get the antibodies tested,
I've had blood tests. The nurse said she would ring GP after I had gone to ask about antibodies, T4 and T3 so hope for the best! I'm on 800 of D3. I do take lots of vit C
Have a good day, what's the temperature like there at the moment?
We have a shroud of dust up there ! Hopefully it won't fall as rain as it will be red and nasty to remove ! the 800 is a silly dose - fit for a mouse !
I have posted my blood test results. They didn't do antibodies or T4, T3 so the GP must have refused! The surprise is my TSH which is 2.5 and it has never been above 0.3! So what does that mean? Why has it suddenly shot up? I'm going to go back and ask for the other tests but would appreciate your comments please.
So it would seem your dose is not adequate and so the TSH is raised. Do have the Private Test for everything that has been mentioned in earlier posts - make a shopping list and link up with Thyroid UK and get the discount.
Liz, Some doctors (who know about hormones) will urge that adrenal issues be addressed first and then the thyroid which usually go hand in hand. There are some things you can do on your own. There is NO question that you have a cortisol problem when you say wired in the evening and slow to wake in the morning.
You have received a lot of good information and hopefully you'll have time to soak it in. Here is a bit more.
Thank you very much for the info. It all looks very interesting and I will definitely take on board. I do see a nutritionist and there have been a lot of improvements over the last three years. We have been working on the gut!
I have the same symptoms had blood test thyroid borderline but my symptoms are horrendous nausea muscle weakness insomnia panic attacks hair thinning shaking hands they go on and on I'm now booked in at doctors had no medication because I was borderline so I'm there tomorrow I need medication this is not going away .
I'm sorry to hear of your situation. You have to keep going and take as much information from this site as you can. Also, try different doctors. It was the nurse practitioner that first agreed to let me have a trial!
hello, I have read all the replies, and its all good advice, but I would like to add something that I have noticed with my patients.
You have been under a lot of stress, and that added to your thyroid and CFS problems , will increase your fatigue ALOT.
We as humans, are very impatient and want a quick fix, where there is none.
We also are very hard on ourselves.
I feel you are completely worn out...exhausted, and need to rest like you have never rested before.
You need to be gentle with yourself and try to relax your mind more too...that is most important, as we are forever trying to work out how to *fix* ourselves, when a lot of the time, it is down to rest, relaxing, daydreaming, gentle exercise and good positive company.
Unfortunetly a lot of the symptoms you mention will not stop, but you can ease them with patience and time.
As for sleep...yes that is a tough one for many.
When I was very ill, I could not sleep well, and yet I was so tired.
The only thing that helped me was playing a relaxing/meditation tape, before sleep.
I cannot stress enough how much we need to slow down the mind, to relax and sleep properly.
Thank you very much. I absolutely agree! However, it is very difficult to keep up in practice! This week has been like a complete shutdown and because I was ill with symptoms no-one wanted to come near me! Yay, time to myself! I have sea sounds at night which I swear by and when I do manage to get off to sleep I do sleep quite well. But at the moment that's not until at least 2 in the morning which is too late. I feel very hot all over like a flush with racing heart and until that goes I can't get off to sleep! This past week I haven't had that and I've just kept sleeping!
I really want to get back into yoga as that really helps with all the things you mention
Cortisol levels can change within minutes. Having a blood test for cortisol at one point in time is not a good indicator of adrenal function. The saliva cortisol test is much more useful - samples are taken at 4 intervals during one day. In some people cortisol can be high at one point and low at another. I had the following test done - canaryclub.org/advanced-sal.... It measures corstisol, DHEA (also very important in chronic fatigue) testosterone, estrogen and progesterone.
Thank you for your reply. I will certainly do the temp testing, that is something simple and obviously very revealing. I had already heard of the morning one for thyroid but not the adrenals.
I am just in the middle of doing a 24 hour saliva testing ! Trying to explain to a Greek Lab what I wanted was testing Excuse the pun Had to travel to the a nearby town 45 mins away as the local lab didn't do it !!
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