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Do I really have M.E? Please help ...

Discussion in 'General Symptoms' started by misskittycat, Jan 14, 2013.

  1. misskittycat

    misskittycat

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    Hi everyone,

    I’m hoping you kind people might be able to offer some advice.

    I have been told I have M.E. by my doctor, but I’m not entirely sure that I agree (because I also have an under-active thyroid).

    My problems with chronic fatigue started 2.5 years. I woke up one day feeling utterly depressed, like I was consumed by it, yet it passed quickly within about a week. After that, I started to feel tired all the time. It was fairly gradual. As the months passed, I felt so weak and exhausted that I had to sit on the bathroom floor to clean my teeth. I struggled to shower; afterwards I would sit on the shower floor wrapped in a towel for about 30-minutes before I felt I could stand up and get dressed.

    I went to see my doctor and, because my mum has hypothyroidism, I asked for a thyroid blood test. My TSH was 7.55. My doctor said that was not bad enough to cause my symptoms. She told me there was nothing she could do for me; just wait and have my TSH tested in another three months.

    As the months passed, I got worse and worse; I hardly left the house because going out was just too much effort. I had to stop working because my arms were too tired to type at my computer, and my head felt so slow and foggy that I couldn’t concentrate anymore.

    I had lots of other symptoms too (which my doctor dismissed as non-specific)...

    Needing to sleep during the day.
    Weakness (even holding a cup/glass felt too heavy).
    Muscle aches / heavy legs.
    Back pain.
    Breathless with even light exertion.
    Heart palpitations throughout the day.
    Skin problems (acne, dry skin).
    Stomach pain, IBS, constipation.
    Cold all the time.
    Sore throat / hoarse voice.
    Brain fog / unable to concentrate.
    Mild depression & changeable moods (my mood can change dramatically within a single day).
    Pins & needles / tingling in my legs (this is a new symptom within the last month).

    After eight months of feeling like my life had more or less ended, I was eventually given levothyroxine 25mcg, although my doctor still didn’t believe I had a thyroid problem.

    Within a couple of weeks, I felt slightly better, and then had a burst of energy for a few days. Straight away I noticed that I no longer felt cold, and I found it easier to do basic things like take a shower. However, the improvement lasted less than a month and then I gradually declined again.

    After another 3 months, my dose of levothyroxine was increased to 50mcg (when I happened to see a stand-in doctor who thought 25mcg was a pointless small dose). Again, I started to feel slightly better for a month or so. Still tired, but slightly improved. That was short-lived, however, because of a stressful period in my life, followed by a week of intense physical activity (moving into a three-story house that needed thoroughly cleaning from top to bottom - I felt like it almost killed me).

    Over the past year, I’ve continued to struggle with my energy levels, even though I take 50mcg levothyroxine. I’ve never been as tired as I was 2.5 years ago. But my energy fluctuates. Sometimes I can do nothing for an entire week. Some days I think I feel ok and so I attempt to do something (like shopping or cleaning.) The following day I’m utterly exhausted again and it can take me 3 − 4 days to recover.

    My TSH is now 3.2 (which my doctor thinks is good.) She says that all my blood tests are normal and that there is little point doing anymore because they will be normal too.

    So, she has diagnosed me with M.E. and says there is nothing she can do to help. The diagnosis has left me feeling hopeless. Will I be like this for the rest of my life? (I'm only in my 30s.) Do I really have M.E.? Did I never have an under-active thyroid in the first place? Or is my tiredness still caused by under-medicated hypothyroidism? I just don't know.

    I would be so grateful if anyone here can tell me if my symptoms above sound like M.E. ... or just offer some general thoughts or advice about where I go from here.

    I feel lost at the moment :(

    Thanks so much.
  2. Kati

    Kati Patient in training

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    Hi MissKittycat,
    The best thing you could do is to get proper testing and exam by a ME Expert (not the psychiatrist kinds)
    They usually test for NK cell function and other immunological dysfunction,a near biomarker and they also test for viral reactivation (EBV, CMV, HHV-6)

    Nearest to you there is Dr DeMerleir in Belgium. dr Klimas in Miami, Dr Enlander in NYC.

    As far as I know thyroid and adrenal dysfunction is part of the disease, i am glad you have been able to get synthroid.

    do make sure you read, or give to your dr the ME ICC: http://www.hetalternatief.org/ICC primer 2012.pdf
  3. Sea

    Sea Senior Member

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    Some people have ME and thyroid issues but I certainly think you need more comprehensive testing before settling on that as a diagnosis for you. I'd be looking for another doctor ASAP, one who is familiar with thyroid issues at least, so that can be ruled in or out as the main cause of your illness.
    justy likes this.
  4. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    misskittycat

    Many of us have thyroid issues and ME, but my doctor (an ME specialist) was not satisfied when my THS went from 5 something to about 2.5 or 3 (taking 15 mg of Armour Thyroid). He wanted to see my TSH much lower and put me on 30 mgs of Armour. He also did the other significant thyroid tests. Now it is 1 something (don't have my tests in front of me).

    I still have ME, but some symptoms are better.

    I agree with Kati, you may have to go outside of the UK to get the treatment you need if it turns out that you do have ME. I'd agree with her doctor suggestions.

    Sushi
  5. Ema

    Ema Senior Member

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    Even the uber-conservative endocrinologists here consider a TSH of over 3 to be diagnostic for hypothyroidism. A doctor that wouldn't treat a TSH of 7.55 is VERY frightening and obviously has not picked up a medical journal since the guidelines were revised in 2002. And so much for common sense in clinical practice considering all your listed symptoms can go along with hypothyroid as well.

    Do you ever take your temperature to see if it is low?

    Your current level is still dreadful in my non-medical opinion and suggests highly to me that you are still undermedicated. The dosages of 25 and 50 mcg are FAR below what is typically given and most patients need to add in some amount of T3 (Cytomel) to feel well. Many patients like myself prefer a natural, dessicated thyroid hormone that is a mixture of T4 and T3 all together.

    Most thyroid experts don't rely on the TSH test at all because it doesn't tell you anything about thyroid levels after conversion from T4 (storage hormone) to the active T3. The important thyroid tests are FT4 and FT3 which will tell you the free levels of hormone in your blood which are available for use. Most women feel best with a FT4 of about 1.3-1.4 and a FT3 in the top third of the range (UK units are different though so keep that in mind for the FT4).

    This website explains all this very well:

    http://nahypothyroidism.org/

    Also read here for more info on hypothyroidism in general:

    http://www.stopthethyroidmadness.com/

    It's also important to assess your adrenal function when being treated for hypothyroidism. Often times, these two go hand in hand. The best way to test adrenals is with a saliva cortisol test where you spit in a tube 4 times across the course of a day.

    http://www.testcountry.co.uk/AM-Cortisol-Hormone-Imbalance-Testing/dp/B004BT8FGC

    Many people with hypothyroidism also have low iron and low ferritin which can also contribute to fatigue. Good iron levels are generally required to tolerate and use thyroid hormone most efficiently. I would ask for a serum iron panel with TIBC/UIBC and ferritin to see if this applies to you.

    I would also consider having your B12 tested if you are experiencing pins and needles especially.

    I don't know if you have ME. The good news is that neither does your doctor because s/he hasn't done the appropriate testing. It's possible (because many people with ME also have endocrine dysfunction) but there is no way to know until that endocrine dysfunction is addressed. But you definitely have undertreated hypothyroidism. Can you get a referral to a doctor that knows their head from a hole in the ground and can help you?

    Ema
    justy, SOC and WillowJ like this.
  6. snowathlete

    snowathlete

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    Sorry to hear your story, I know it is horrible both not knowing and also being dismissed by your GP.
    Not sure if you have ME or not. It is not a clear case from what you have said and I am not a doc, but it certainly could be ME. It could also be something else, perhaps thyroid (the 'normal' range is different in the UK to what it is in the US and just about everywhere else.
    Sorry, i know that isnt a very helpful answer.

    I'm in the UK too. after lots of blood tests i saw a GP who specialized in ME at a ME clinic. Some are ok, some are dreadful. Mine was ok for diagnosis, but the clinic was useless for treatment. DO NOT TRY THE GRADED EXERCISE THERAPY! I can not stress that strong enough. I tried it and it immediately made me ALOT worse. My experience is not unique. There is no science behind it, but they will tell you that there is. It is about the worse thing you can do if you do have ME.

    There are not many options in the UK.
    It may be helpful for you to get refered to an NHS ME clinic for formal diagnosis, as at least they are more likely to be able to distinguish ME from thyroid problems or something else.
    Beyond that, seeing a true ME specialist is the best bet in my opinion. I am travelling to Belgium to see Prof De Meirleir soon as he is the best within striking distance. He could diagnose you or rule it out. He also offers testing and treatment of various types.

    Alternatively there is Dr Myhill in Wales, and some other doctor up in Sunderland i think, though she may only do research, i am not clear on that, or on if she is any good. There is the breakspear in London but they dont have the best reputation and are very expensive. There are a number of psycological treatments offered in teh UK privately but of course these would not work as ME is not a psycological condition. :rolleyes:
  7. WillowJ

    WillowJ Senior Member

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    I agree with the others that you have not been properly evaluated and there is no way you, we, or your current doctor knows your primary diagnosis.

    I disagree that there is nothing more which can be done to help you, regardless of what your proper diagnosis is. You do not just leave breathlessness untreated regardless of the cause. Please insist on being tested for asthma/COPD/similar (the main testing procedure is the same but get a methacholine challenge for asthma if necessary), heart problems, and/or weak lung muscles, whichever one first seems most likely, and going through the whole list and keeping asking for other answers if nothing shows up (even if you have M.E., that does not cause SOB for no reason; there is something causing it whether weak lung muscles, chest inflammation, etc.).

    Also they can attempt to treat your sleep difficulty/daytime sleepiness. A sleep study to check for disordered breathing/ apnea/ upper airway resistance/ perhaps narcolepsy (depending on your symptoms) could be in order.

    A referral to neurology could be in order to check for neurological causes for symptoms like muscle weakness and the tingling.

    If they have not done a comprehensive metabolic panel to look for things like potassium deficiency, they should (this could cause weakness as well as tingling in extremities and fast or irregular heartbeat). This is a simple blood test, not particularly expensive.

    If the depression is not caused by hypothyroidism or cortisol issues, they could try various medications for that if you want.

    There are medications for IBS. Or dietary changes and probiotic can be very helpful, perhaps better than medications.

    Pain medicine, even simple things like prescription NSAIDs, could make you more comfortable. Could also reduce inflammation, which might get at the disease process if it's inflammatory in nature.

    These are just examples. Other treatments are possible and other things may be more adviseable in your specific case. My point is that things do not need to remain as they are. But it would be nice to have help from a doctor with a sense of professional curiosity.

    In short, if at all possible get a new doc who is willing to check into things further and look for other diagnoses, and treat symptoms.
  8. ukxmrv

    ukxmrv Senior Member

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    In the UK one of the worst diagnoses you can have is ME or CFS. The quality of the investigations and of the criteria used to diagnose CFS is so poor that it isn't unsual for patients to find out years later that there is another cause for their symptoms.

    First of all you have probably not been diagnosed with ME? Most UK GP's are using the NICE guidelines to diagnose something they call CFS/ME. Would that be right in your case? This is a diagnois of exclusion in that they are supposed to rule out other possible reasons for your symptoms.

    In the UK you are going to be really stuck finding a doctor who can do a proper workup and give you sensible advice. Many of the old ME doctors are dead, retired or been persecuted by the General Medical Council. Suggesting that one see a doctor in the UK is very hard in reality to actually do.

    A few ideas. Dr Peatfield is one doctor with an interest in thyroid and CFS. I've not seen him myself. Here's a link to a talk he gave to the Liverpool group

    http://liverpoolmesupportgroup.org/?page_id=83

    There is also Dr Enlander who visits the UK once or twice a year and sees patients

    http://www.enlander.com/

    Plus Dr Myhill

    Sure to be others of course. These are just the ones who spring to mind

    http://www.drmyhill.co.uk/
    justy and Shell like this.
  9. rlc

    rlc Senior Member

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    Hi Misskittycat, I think you are very right to doubt a ME diagnosis at this time. Your initial TSH tests result of 7.55 clearly showed that you very likely had hypothyroidism. Hypothyroidism was said to be diagnosable, when TSH is above 5.

    However, modern research has shown that the true reference range for TSH should be 2.5. Which means, although you have been receiving treatment, that has lead to some improvements. Your TSH now at 3.2 is not low enough. Basically your hypothyroidism appears to have not been treated correctly.

    The debate about the TSH reference ranges is explained in detail in this article http://thyroid.about.com/od/gettestedanddiagnosed/a/tshtestwars.htm

    In this article, by Dr Mirza http://www.bmj.com/rapid-response/2011/11/02/unveiling-mysteries-thyroid

    He explains that the goal of treatment should be to reduce the TSH level to between 1 and 1.5, this will show if the patients symptoms are caused by hypothyroidism.

    He explains that


    This means, you should consider getting a doctor to use this equation, to adjust your thyroid medication to a level, which will reduce your TSH to between 1-1.5. Care must be taken to get the dose right, because too much medication will cause hyperthyroidism.

    He also explains that


    It sounds like you have not been spending much time outside, and I noticed you live in the UK, which means, that you are very likely to have a co morbid Vitamin D deficiency as well, caused by a lack of sunlight. Vitamin D deficiency can cause fatigue, low mood and muscle pains etc. This can be easily tested for and treated, if you have it.

    Dr Mirza has also written these articles http://www.bmj.com/rapid-response/2011/11/01/myth-chronic-fatgue-syndrome and http://www.bmj.com/rapid-response/2011/11/01/chronic-fatigue-syndrome-nice-and-cdc-miss-boat

    That explains, other conditions that you may have as well, such as Celiac, and explains that the reference ranges for the likes of B12, are also out of date. And wrong.

    It would be a good idea to read these articles, and make sure that your doctor has ruled out all these other conditions, and has not been using the wrong reference ranges, leading to them missing other diagnoses.

    If you haven’t already, it is a good idea to get copies of all the tests you have done, so you can see if anything has been missed.

    Because modern research shows that the TSH range is wrong, and your results by the new ranges show you most likely have hypothyroidism, and that modern research shows your TSH level isn’t being treated correctly, and your symptoms are those of Hypothyroidism, see http://thyroid.about.com/cs/basics_starthere/a/hypochecklist.htm and you have shown some improvement with thyroid medication. It looks very likely that there is a possible explanation for your symptoms, under medicated Hypothyroidism.

    If I were you I would not accept an ME diagnosis, until such time as your Hypothyroidism, has been medicated correctly, to achieve a level of TSH between 1-1.5 as recommended by Dr Mirza, and all the other possible co morbid conditions, such as, Vitamin D deficiency, B12, celiac etc, have been ruled out correctly.

    It sounds like your Doctor does not have good knowledge of modern research on Hypothyroidism and its treatment. So if you can, I would recommend seeing a different Doctor, whoever you see, make sure you print out and take with you the article on the thyroid by Dr Mirza, and ask them if they will follow the up to date level of treatment he recommends, and test for other possible co morbid conditions, such as Vitamin D deficiency etc.

    Hope this helps, and you start to feel better soon

    All the best

    justy likes this.
  10. misskittycat

    misskittycat

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    Thank you so much everyone for taking the time to reply in detail. And thank you for all the links - I’m going to read as much as I can today. I’m sure I’ll find it all useful.

    Reading what many of you have said, I feel that my doctor has suggested ME without fully investigating other possibilities. Almost as if telling me I have ME is an excuse not to bother doing any more tests.

    I have never been tested for B12, vitamin D, iron, adrenal function - nothing like that at all.

    I had my T4 and T3 tested 2 years ago:

    Free T4 − 17.0 pmol/L (range 9.0 − 26.00)
    Free T3 − 5.3 pmol/L (range 2.8 − 7.1)
    Thyroid Peroxidase AB - 8 klU/L

    My doctor thinks it’s unnecessary to test them again because they were well within reference range.

    Recently I’ve had a chest X-Ray and an ECG. Again, I was told everything was fine.

    Last month I had a full blood count. My doctor said the results were very good (as usual) so I requested a copy for my own reference. I’m slightly out of reference range on a few counts, so I’m not sure why my doctor said the results were VERY good - in fact she said I’m a ‘very healthy specimen’.

    Haemoglobin - 125 g/L (range 115 − 165)
    Red blood cell count RBC - 3.86 (range 3.8 − 5.8)
    *Mean corpus haemoglobin MCH - 32.3 pg (range 27 − 32)
    Mean corpus volume MCV - 94.6 fL (80 − 100)
    Total white cell count - 7.2 (range 3.6 − 11)
    Platelet count - 211 (range 140 − 400)
    *Haematocrit - 0.365 (range 0.37 − 0.47)
    *Monocyte count- 0.89 (0.2 − 0.8)
    Neutrophil count - 3.01 (1.8 −7.5)
    Basophil count - 0.03 (0.02 − 0.10)
    *Eosinophil count - 0.07 (0.1 − 0.4)
    Lymphocyte count - 3.25 (1.0 − 4.0)

    I imagine optimal health is somewhere in the middle of the ranges? It seems to me my RBC & Haematocrit is slightly low, whereas my Mean Corpus Volume is slightly high… But I don’t know if it’s enough to actually show any signs of anaemia.

    I also had urine and liver function tests - they were normal too.

    Serum urea level - 2.9 mmol/L (ref range 2.5 − 7.8)
    Serum potassium - 4.3 mmol/L (ref range 3.5 − 5.3)
    Serum sodium - 141 mmol/L (ref range 133 − 146)
    Serum creatinine - 57 umol/L (ref range 45 − 84)

    Serum C reactive protein level - <1 mg/L (ref range <5)


    I’m a shy type of person. I get very anxious about seeing the doctor because I’m aware that, to look at, I most probably look like a perfectly healthy person (apart from being very pale with dark circles under my eyes). So I’m always conscious that doctors might think I’m just imagining I’m unwell. When the doctor tells me that my blood tests are fine, and that there is no point having any more, I find it very difficult to argue my case (without crying and looking like an idiot). The whole experience of seeing a doctor causes me to feel exhausted the following few days.

    I wish I had the money to get private tests done, or to see a private specialist, but I’m struggling financially. I used to work as a freelance graphic designer but I’ve had to stop because I just can’t finish projects on time anymore. What used to take me a week to do now takes me 3 or 4 months. It’s like I can only use a fraction of my brain and even that results in me feeling too tired to carry on.

    At first I felt that I had to accept ME as a cause, and accept that I may be ill for years, or even my entire life. But now reading everyone’s posts, I think I shouldn’t accept it without further investigation. Certainly not when my thyroid might still be the real cause.

    I’m going to read as much as I can, from your suggested links, before I see the doctor again.

    Thank you again for all your replies.
  11. vamah

    vamah Senior Member

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    I’m a shy type of person. I get very anxious about seeing the doctor because I’m aware that, to look at, I most probably look like a perfectly healthy person (apart from being very pale with dark circles under my eyes). So I’m always conscious that doctors might think I’m just imagining I’m unwell. When the doctor tells me that my blood tests are fine, and that there is no point having any more, I find it very difficult to argue my case (without crying and looking like an idiot). The whole experience of seeing a doctor causes me to feel exhausted the following few days.
    I am exactly the same way and I recently resolved that when a doctor dismisses my concerns or implies it is all in my head that I will walk out of that office and never go back again. I don't know what the situation with doctor shopping is in the UK, though. I am currently paying out of pocket to see a doctor outside my insurance because all the doctors in my HMO were reading from the same book. I'm fortunate that I can afford to do this right now. My advice is to beg, borrow, steal, lie -- whatever you have to do to get some help. I lied to my OB/GYN about symptoms in order to get a prescription for an antiviral when my primary doctor wouldn't even test me for viral infections. Doing that has given me some answers I wouldn't have had otherwise. Good luck.
  12. Ema

    Ema Senior Member

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    I would strongly consider doing this even if you have to pay for it out of pocket. It will be a small investment in terms of getting your treatment off on the right foot after such a disastrous start.

    Two years ago is too long ago to make any determinations about where your levels might be now. Were you sick when those bloods were taken? Are those the results that went along with your 7.55 TSH?

    It is not normal to have any thyroid antibodies. People with low levels of antibodies often go on to develop full-fledged Hashi's within the next decade or so. Treating thyroid properly (and often times eliminating gluten as it can be cross-reactive) can go a long ways to mitigating this threat however. I would also refer you to this website book (after the first two I posted) for more information on auto-immune thyroid conditions:

    http://www.thyroidbook.com/

    Well, I think we covered your doctor in the earlier posts.

    I think this looks like anemia in my non-medical opinion. I would follow up on this as well.


    This is also normal unfortunately. I've certainly been through it as have most everyone else here. In time, you will learn to stand your ground without becoming emotional but it takes time and effort because with our health everything is on the line. I hope that you have a friend or family member that can help you advocate for yourself. It can really help.

    Good luck and happy reading!

    Ema
  13. Shell

    Shell Senior Member

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    You've been put through the mill a bit misskittycat.
    It does look like your thyroid was and possibly still is underactive. I won't repeat what's been said about optimal thyroid levels.
    You could request a higher dose as rlc suggests. My guess is - being long under the NHS yoke - that your doc will refuse.
    You could try boosting it with sea kelp which is high in iodine and helps thyroid function.
    My hypothyroid is mild and I used sea kelp to just tip it back into something better. (stopped my hair falling out and raised my basal body temp BBT).

    the fact that your MCH is high suggests a possible b12 deficiancy - you won't get help on the NHS for that but you could try and source a sublingual B12 suppliment. Or if you have the money - or a rich friend, get it tested, and get the injections. As someone else has mentioned the blood cell results seem to suggest some flavour of anemia. No ferritin results though.
    It looks like you may have problems with carrying oxygen. Do you have cold extremeties, shivering or feeling faint?

    I would love to tell you this isn't ME, but it's difficult to tell. If it is ME I am very sorry, but perhaps what is worse is not knowing for sure.
  14. misskittycat

    misskittycat

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    Those T3 and T4 results were taken 6 months after my initial TSH 7.55 reading. At that point my TSH had increased to 8.6, but my doctor felt the T3 and T4 were normal, and doubted that a TSH of 8.6 would make me unwell. I felt terribly unwell during that period. Two months later in March I started on 25mcg of Levothyroxine. By June my TSH dropped to 6.3. I then increased to 50mcg. By March 2012 my TSH was 3.5. In December 2012 it was 3.2.

    I think it looks like anemia too - or at the very least, borderline anemia. I'm a bit scared to tell the doctor that I disagree! I really don't know why she said my blood count was very good. I wonder too if I might be slightly B12 deficient since I have been vegetarian for 25 years.

    Thanks again.
  15. misskittycat

    misskittycat

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    Yes, I do have cold extremities. My feet get unbelievably cold and quite often look purple. My feet swell quite often too. Yes, I do feel light-headed sometimes, especially when I stand up, and I have fairly low blood pressure.

    Thanks for your reply.
  16. Valentijn

    Valentijn Activity Level: 3

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    This is exactly what your doctor is probably intending. The BPS school advocates only testing the things which you had tested, and then not giving any referrals, drugs, or further investigations except CBT, GET, and/or antidepressants. Dismissing abnormal results also seems very irresponsible, and probably reflects a belief that ME/CFS is a psychosomatic illness.

    Your doctor is probably completely useless. I would suggest doing whatever it takes to get a different doctor, preferably one that is willing to at least manage symptoms, but I have no idea if switching GPs is possible in the UK. It's also not just a matter of not treating your ME - if your GP is ignoring abnormal results, they probably will assume any new symptoms you have should not be investigated. A Dutch woman died from breast cancer recently due to exactly that problem, despite having very obvious and serious symptoms.
  17. Valentijn

    Valentijn Activity Level: 3

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    You might be okay on B12 if you've been eating enough dairy and eggs. But even when on high-protein diets, a lot of ME patients find that a high-dose B12 supplement is helpful for managing symptoms.
  18. rlc

    rlc Senior Member

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    Hi Misskittycat, I’m getting the impression that a major cause of your problems is your doctor. They have failed to run basic tests like B12, have gone against the opinion of the medical establishment, and are saying that your TSH levels don’t explain your symptoms, when they do. Have failed to correctly treat your thyroid, and are ignoring a positive Thyroid Peroxidase AB test. Only 3% of people have a positive Peroxidase test and don’t have a disease, thyroiditis is the most common disease found in people when this test is positive, see http://www.medicinenet.com/thyroid_peroxidase_test/article.htm

    Your full blood count is not good some of the readings are slightly out of range. Your MCH is slightly high and your Haematocrit is slightly low. This indicates the possibility of borderline anemia. This is probably caused by one of the things your doctor has failed to test you for, such as, B12, Folate or Iron deficiencies. Deficiencies in all these things are very common in long term vegetarians, and your doctor should have tested you for them.

    You also have a slightly high Eosinophil and monocyte count. Because these tests results are only slightly out they might not mean much, but they should be redone in the near future because they can indicate serious conditions. See http://www.fpnotebook.com/hemeonc/lab/MncytCnt.htm and http://www.fpnotebook.com/hemeonc/lab/EsnphlCnt.htm

    From all of this I fail to see how your doctor can say “the results were VERY good - in fact she said I’m a ‘very healthy specimen’.

    My feeling is that if you can get your thyroid properly medicated, so that the TSH level of 1-1.5 recommended by Dr Mirza is achieved, and you are tested for B12, Folate and iron deficiencies, which your full blood count tests and vegetarian diet indicate are possibilities and these are treated. Plus it is very likely that you have some level of Vitamin D deficiency and that is tested for and treated. You should start to feel a lot better, very quickly.

    You should also be tested for the likes of Celiacs, Glucose and Adrenal insufficiency as well. All of this, and what the correct reference ranges are, is covered in the articles by Dr Mirza, in my post above.

    The hard bit is getting a doctor to do all this. My advice is to, if you can, get another doctor. Your current doctor, is according to the medical opinion of highly qualified specialists, not doing what should be done for people with your symptoms and test results, and is instead dumping you with a ME diagnosis, when the evidence suggests there are other treatable causes of your problems.

    Because you are having troubles with shyness, I would recommend that you take a support person with you, to any further Doctors appointments, if you can find some kind soul, who will read the above articles, and get an understanding of what should be being done, they will be able to do the talking for you, and support you. Also Doctors behave a lot better when there is a witness in the room, and are far less likely to fob you off with un medical excuses.

    If you print out and take the articles in my last post with you, it also puts the doctor in the situation of having to argue with the information from the articles, rather than being able to just dismiss you, by saying that there is a lot of rubbish on the internet. Dr Mirza is an assistant professor of internal medicine at Auburn Memorial Hospital in New York and an Endocrinologists, and is far more qualified than any GP.

    All the tests and treatments that it looks like you need, are standard medical tests and treatments, that any GP should be able to do for you, you should not have to pay privately for things like B12, iron, Vitamin D, etc, etc tests.

    Hope this helps, and you are soon able to get the medical tests and treatments that you need!

    All the best

  19. misskittycat

    misskittycat

    Messages:
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    UK
    Thanks, rlc

    Reading your post has made me feel more hopeful.

    I'm going to ask the doctor for an increase in Levo, as well as for blood tests for B12, iron, folate, Vitamin D. My boyfriend says he will attend the appointment with me - he is a lot more confident than me and won't take no for an answer. So fingers crossed with the right blood tests I might find I'm deficient in something that can be easily treated.

    Thanks once again for all your advice.
  20. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
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    Albuquerque
    It is important that the tests be for active folate and B12--as the usual test is total amounts which includes inactive and oxidized forms. Your doc will probably dismiss this!

    Sushi

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