Hi have recently been diagnosed as having M.E or CFS

Hi

I have been very unwell since the age of 20 and I am now 45.I have had loads tests to try and find out whats wrong with me.It started as I said before when i was 20 when I had a terrible virus,I ended up being on antibiotics for over a year as I kept getting sore throats.I then had my tonsils and addinodes removed but still the symptoms persisted.I went from a happy go lucky person full of energy to a guy who dose nothing else than work and sleep.About a year ago I was diagnosed as having M.E but am not to sure that is what I have.I am now feeling so depressed with the whole situation its unreal.Can anyone give me any advice at all before I lose my job from being so tiered all the time.

Kind Regards

Dave

27 Replies

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  • Dave, have you had thyroid blood tests to check whether you have an underactive thyroid?

  • Hi

    I have had over 100 blood tests in my time and they all show nothing's wrong.im guessing I have been checked as on my last test the doctor tested me for everything on the envelope

    Dave

  • Dave, I'd recommend getting a copy of your most recent thyroid results from your surgery. Post them with the lab ref ranges (the figures in brackets after your results) in a new question for comment/advice. Thyroid normal is a very broad range and if your TSH results are at the mid/top of the range you may be hypothyroid. It's not uncommon for undiagnosed hypothyroidism to be misdiagnosed as CFS, ME and fibromyalgia.

    If you've had full blood count and blood tests for ferritin, vitamin D, B12 and folate post those too.

    edited to clarify I meant TSH result.

  • Clutter, don't you mean 'if your results AREN'T at the mid/top of the range you may be hypothyroid'? Because surely they're supposed to be at the mid/top of the range. :)

  • No, GG, I was thinking purely of TSH and not FT4 or FT3.

  • Well, maybe you should have said so. It was a bit confusing the way it was written - especially for someone who knows nothing about all this.

    Hugs, Grey

  • To err is human and all that. Perhaps I should run my comments via you before posting.

  • Oooooooooooooo sarcasm! lol

  • I would be very interested to see your thyroid function test results

    All too often ME/CFS is given as an excuse for failing to recognise hypothyroid especially central/2ndary hypothyroid because all they do is TSH

  • Dave I am sorry you have been unwell for such a long time and, as Clutter suggests, get a copy of your blood test results for your Thyroid Gland. You may be surprised to find that it may never have been done or that the results have been misinterpreted. If you have only ever had a TSH (thyroid stimulating hormone) test you must ask for others to be done, T4, T3 and Free T4 and Free T3. Ask doctor for a Full Thyroid Function test.

    We may never, ever have asked for our blood bresults to be printed but it's quite easy, just ask Reception (some may query why so say you want it for your own records). Make sure they have the ranges too (figures in brackets). If your GP hasn't checked your Vitamin B12, Vitamin D, iron, ferritin and folate ask for these to be done as they can cause problems if deficient. Sometimes, the ranges of tests can be quite wide and, even if at the bottom of the range, are told we have 'normal' results but we can have troubling symptoms.

  • Thyroid antibodies ?? Have you had your thyroid antibodies tested?

    Have any family members got thyroid disease?? Or autoimmune conditions ??

    How awful that you have been ill for so long, please take advice from the other posts and let us know your blood results.

    Sue

    thyroiduk.org

  • My 14 year old son is also in a similar situation, we are expecting a diagnosis of cfs/me at our next appointment with a consultant. All I can say is make sure that you get your occupational health team at work to try and understand your condition. As you have been diagnosed now they should put steps in place to help you. We have been totally abandoned by the nhs and have started visiting a clinic in north Yorkshire that has expertise in cfs. What you will need is time and rest and try to pace yourself (easier said than done), perhaps working part time for a while? Good luck and I hope you get over this horrible illness, I can only imagine you have had the same disheartening endless stream of negative blood results as we have had, and people expecting you to get over it in a week. If you need details of the clinic pm me.

  • Hi, forgive me if I offend anybody but a very wise doctor who is no longer with us told me that in his opinion M.E and CFS are a symptom not the illness making you unwell. He treated me as having hypothyroidism and my health improved, he also have me confidence to keep pushing for answers, I was then also diagnosed with Hughes Syndrome. My cousin who was diagnosed with M.E / CFS accepted his diagnosis and now is too ill to work or enjoy his life.

    I think what I am trying to say is don't readily accept the M.E diagnosis as it is a way for Doctors to explain away an illness that they do not have the time, money or ability to treat. Just out of interest my thyroid function tests always showed me to be 'normal'. If you decide to try self medicating with levoThyroxine there is plenty of educated advice available on this forum to help. Good luck

  • I've had my results back today, Doctor says they are normal. But I still feel tired all the time and have many, many other symptoms of hypo, even the nurse said what ever is making me feel so bad sounds like hormones to her!

    My results are TSH - 1.74, T4 - 11.9 and T3 - 4.1 from what I understand the TSH is bang in the middle so fine, but the T4 and T3 although "normal" they are on the low side of normal.

    The doctor wants a telephone appointment with me now, he's now not in until Friday so I'll have to wait all week). I have no idea what he's going to say, but I just know I want things sorted out.

    Maybe it's a different hormone that's making me feel this way. I've noticed that I've been worse since I had chicken pox 2 years ago!

  • The doctor I referred to earlier was convinced that a late attack of chicken pox was the cause of many hormonal health problems.

    If you thyroid results show as 'normal' you are unlikely to find a doctor willing to send you to an endocrinologist or prescribe you levoThyroxine.

    My illness led to all of my hormones being out of sync, even the contraceptive pill made my very unwell. LevoThyroxine has not cured me but it has allowed me to live my life rather than existing. Don't give up or get downhearted get googling and picking the brains of those on this site x

  • That's interesting what you said about chicken pox. It was the second time I'd had it (first time when I was younger and can't really remember it). Luckily I'm seeing the same doctor that diagnosed the chicken pox 2 years ago. It was definitely chicken pox as my daughter caught it off me and was really bad with them,, so much have been a strong strain of them :-(

    I'll keep googling!

  • Dave, I don't think your doctor would think those results were normal if they were his!

    A person with absolutely no thyroid problems has a tsh of around 0.8 to 1.25, so yours is a little high. However ft4 should be over mid-range, and you said yours was low - it would help if you could get the ranges - and the ft3 should be up the top end of the range - or even slightly over. So, as you also have symptoms, I would say you are hypo.

    The next thing to do is get your antibodies tested.

    Hugs, Grey

  • I think it was pipes10 who posted their results -

    I was going to say most feel normal with a TSH below 1. J :D

    GP said I had CFS/ME after my Thyroid op, TSH 5.24 was still in range (but not normal for me) and I had TPO antibodies. Good idea to get results of iron, ferritin, folate, B12 & vitamin D too.

  • Oops! lol I get so confused sometimes! Don't know who I'm talking to.

    My apologies, Dave. :)

  • That's OK! So that could be why the doctor wants to talk to me in a telephone consultation. Even though they've come back "normal" it's where they are in the ranges? I'm unsure of the ranges but I think they could be:

    TSH - 0.4 to 4.5 (mine was 1.74)

    T4 - 10 to 24 (mine was 11.9)

    T3 - 4 to 8.3 (mine was 4.1)

    I'll have to ask to check the ranges though! I know May last year (2013) my TSH was about 2.94 so a lot higher!

    I'll have to beg for the antibodies test I think, had to beg for the T3 and T4 test. But I think it should be checked as I know there are immunity problems in my family, if that makes a difference I have no idea!

    I'm even beginning to wonder about my fillings being the cause. LOL! I just know I don't feel well and want to know what's wrong!

  • Of course you do! It's only normal. I'm wondering about my fillings, too. Actually, I've lost so many teeth (they just break off) that I've only got too filled ones left, and they don't seem to be mercury fillings because they're white. I don't know. And my dentist isn't any help. He doesn't even believe that mercury is a problem!

    Anyway, about your results. I'm afraid most doctors have no idea about results being in the right place. They think that is they are 'in range', that's perfect! Only we know different. So don't be suprised if your doctor says oh, everything's normal, no further action needed!

    If there is a history of auto-immunity in your family, then the odds are that you have Hashi's. But that's another thing that doctors don't know. Have you had your B12, vit D, iron, ferretin, folate, magnesium tested? Because if any of them are low, that will make you feel bad, too.

    As to it being a 'different' hormone that's making you feel bad, it could well be. When one hormone is out of kilter, all the others will be affected as they are all interdependant. For example, Human Growth Hormone is needed to convert T4 to T3. But T3 is necessary for the production of Human Growth Hormone (HGH). Lot's of hypos have low HGH.

    Also, if your adrenals are fatigued due to your low thyroid hormone, you will also be low in cortisol, DHEA, testosterone, etc.

    So if your doctor is agreeable to testing these other hormones, it wouldn't be a bad idea. However, the likelyhood of him knowing how to treat these deficiencies is infinitesimal! You may need to see an endo.

    However, I hope your doctor has some good news for you on Friday.

    Hugs, Grey

  • Hey - sorry to hear you have suffered for so long - it is so distressing when all the tests come back as "normal" , but you still feel so ill. My son had this "diagnosis" for over 10 years...aged 16 -26yrs. The nhs did nothing of course - but we have just found out he has pyroluria..a metabolic dysfunction that basically means he was chronically short of zinc and B vitamins..especially B6. He is now recovering on zinc picinolate and P5P...and is feeling better than he has for ages. He will have to supplement for life...but this is a small price to pay.

    Please get checked out - your gp may not know about it, but you could go private if you can afford it.

    Hope you get some answers soon.

  • Hi Dave 1189,

    I have had ME/CFS for 5 years now - it started in exactly the way you describe yours.

    The NHS has been no help -I got help from a variety of sources, all private, I'm afraid, so it costs. And I had to do a lot of reading to judge where was best to go.

    From my experience, I'd say get both your adrenals and your thyroid tested early on - mine were both below par, but are now much improved and I anticipate a near full recovery of them. Genova offer tests for both - I used the saliva-based Adrenal Stress Index and the full thyroid panel which includes TSH, freeT4 and T3 and antibodies. You should also consider getting tested for a variety of vitamins and minerals, as others have mentioned. If you post the results here then people can comment on them.

    I also found that I had high levels of toxic metals in my system (from working in heavy industry), but these are reducing through the use of chelating agents. I have also had digestive issues that were completely new to me, and some mineral and enzyme deficiencies. I had help with these and the tests that uncovered them from a nutritionist who has worked with ME/CFS people before - she correctly predicted most of the things wrong with me!

    I have improved hugely and now live an 85-90% normal life - I just don't have as much energy as before, but I can do a reasonable amount of physical activity. I also have a restricted diet and have been told to avoid vaccinations - so no exotic holiday destinations!

    I agree with others' comments that ME is often used as a "diagnosis" for symptoms caused by other underlying problems eg adrenals, thyroid ( and the NHS establishment just doesn't completely recognise these!). However, there are other, more difficult issues - an out-of-balance immune system (which I have) and dysfunction of the mitochondria (I also have). Mitochondria are the body's power stations and they exist in every cell - if they don't work properly you can't produce enough energy, and, for various physiological reasons, if you push yourself it tends to lead to a "crash". The immune system problem means that I catch every bug going and have very slow recovery. These are aspects of the illness you might need to look at later on.

    Look at Sarah Myhill's website - she's a doctor focusing on ME/CFS and her website has lots of really helpful information. I think that she may not be taking any new patients for the moment, but she can arrange a variety of tests and interpret them for your GP.

    Good Luck! I liken my condition to a row of dominoes that have fallen over - it's taken me years to work out which dominoes need picking up first, and in what order - and I'm sure that this varies from one person to another!

  • Hi Xanthe, which lab did your heavy metal toxicity tests? And were they blood, urine or hair?

  • One test was done by Genova, the other by Biolab in London (this one arranged by Dr Sarah Myhill). Both were urine.

  • I too was diagnosed with ME at 21 yrs of age after glandular fever. I'm now 48! My bloods always show as within range for hypothyroid but my consultant yrs ago tried me on thyroxine and it made a good improvement in my life. I am on 100mcg daily. My own gp tried to take me off it several years ago and this landed me straight back in bed 24/7! Xx

  • Hi Dave so sorry to hear that you have been poorly for so long.

    I too was diagnosed with CFS/ME. by a NHS Specialist. however two years later I was formerly diagnosed with hypothyroidism!

    I too have found that I have need to provide support to me adrenals so I would recommend you do the Saliva test the Genova sell.

    I also have found it helpful to supplement my vitamin b's ( I know there is a lot in the world of of CFS/ME but worth checking out).

    A famous doctor in America called Dr Lowe ( who sadly is no longer with us) found that CFS/ME often have complex underlying metabolic difficulties and that once addressed he was able to get a large proportion feeling much better -but not everybody -thyroid and adrenals were two common ones and often both. Dr Skinner was another doctor who became involved with treating CFS/ME patients as he was virologist so he was invited to look at this area to see if he could help patients -he too often found that it was often due to sub clinical or undiagnosed hypothyroidism and also adrenal insufficiency. Unfortunately he too sadly passed away earlier in the year.

    I too would suggest that you look at Dr Myhills website there is very useful info on their that am sure you will find helpful. She also offer the Mitochondria test that another poster mentioned.

    You may find that you have some autoimmune conditions so it is worth checking if these are causing you problems so checking for thyroid antibodies -do other people in your family have any autoimmune conditions -not necessarily thyroid -if so this is definitely worth looking at. In my family for example several of us have Vitiligo but there is also rheumatoid arthritus, Sjorgens and hypothyroidims...

    I really wish you well on your journey to better health -I hope that you will keep us all posted and carry on asking questions ! :)

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