Docs Easy Answer Chronic Fatigue /ME

I received my Endo report stating that I most possibly have Chronic Fatigue/ME as my TSH levels are within normal range . I got thyroid tested yest and cortisol levels which will have result on Fri . I know myself I do not have ME and that I need an increase in MEdication I have been taking 62.5mg instead of 50mg since mon and now have another throat infection must be sixth one since August . Please can anyone suggest what I need to do ? I have lost my job as they blamed it on vertigo and trying to appeal it meetings on tue which I have no energy to go too but I will go even if I collapse as what's the point anymore just be a young woman ill for life with no life :( please can someone offer me any advice . Thanks in advance !!!

34 Replies

  • You will have to get the latest results to know if it's still your thyroid.

    Have you been tested for vitamin B12, vitamin D and ferritine?

  • Hi Flower , thanks for replying I really appreciate it do much . My B12 I was told was perfect but wasn't given any numbers and my doc won't retest for vitamin d as I had it done a year ago . I don't think I have ever had folate or ferritin levels checked though not sure . I know it's my thyroid but they will not listen unless it's in results as I have had so many infections plus shingles over the last year so that's why they are saying chronic fatigue . Thanks so much I appreciate any advice :)

  • ME..... Is one of those illnesses which have no proper definition. To arrive at the conclusion that itis me, the doctor has to consider and rule out everything else. ( its called a differential diagnosis).

    ha! Now the fun begins:

    Start with a Full. Thyroid profile. Tsh, t4 t3 antibodies. Followed by a t3 urine uptake test. D3, b12, zinc, magnesuim.

    There is a lot of information on the net about what Can cause me symptos, and all of these need ruling out before you can truly have an Me diagnosis.

    Of course when he realises how much work its going to be, it might be easier for your doc just to prescribe a raise in thyroid medication. Lol.

    Good luck!

    G xx

  • Hi Galatea , thanks so much for reply and information . I don't think iv ever had a test for zinc or magnesium and my b12 was perfect and vitamin d they won't retest . I do think it's my thyroid but gp just won't listen and endos response was that it was ME due to the fact I had vertigo shingles loads of ear throat kidney infections constantly . Thank you so much for taking the time to reply to me and for all your help :) x

  • I very much doubt that your B12 was perfect! Mine was right at the bottom of the range and my doc said it was 'perfect'! But I was having all sorts of B12 deficiency symptoms - including Dizzy spells! I've been much better since I've been taking B vitamin suppliments.

    The trouble is, they really don't know what they're talking about. They simply have no idea how these things can affect you. You really, really must get a print-out of your results every time. It is your right in law to have them. Don't just trust a doc's word for it.

    Hugs, Grey

  • Hi Grey , thanks for replying really appreciate it . I will ask again for a printout . I am now taking floradix as well as b1 b3 b5 incase my b12 is low . My mum has pernicious anaemia and she keeps saying I have all the symptoms but hopefully not . Iv to get my cortisol results on Monday as for some reason no other doc would discuss them with me so whether there's anything wrong or not iv no idea . Thanks again for all your advice and kind words :)

  • I expect they wouldn't discuss them because they don't know anything about them. That's another very vague area for doctors!

    Good luck!

  • Hi Grey hopefully they can tell me something . GPS are so unhelpful u feel like a hypochondriac sometimes lol . Thanks

  • Yes, but I really think that their unhelpfulness is down to ignorance rather than bloody-mindedness. They just haven't been taught these things but are too pround, most of the time, to admit it. They just gloss over it.

  • Depending on your results It might be worth checking if you have adrenal fatigue via a saliva test.

  • Hi Pooh10 , thanks so much for sending that link . I have all those symptoms and my kinesiologist told my adrenal glands were exhausted . I am waiting on cortisol levels results tomorrow though I prob will only be told they're normal or satisfactory . Please could you tell me how I can get my doc to test my adrenals or what type of doc I could see . I know I do not have chronic fatigue or ME it's my thyroid . Thanks so much your advice is so appreciated .:)

  • Hi Angie - Re adrenal fatigue, I think you can get an adrenal stress saliva test from Genova diagnostics (you need a practitioner to sign off I think you can use Thyroid UK) and pure health (no signature needed) labs. Initially Dr P helped me but I am now looking into gut health at the moment and my practitioner includes adrenal heath in his work. I think some integrative nutritionalists also include adrenal health (Louise Warvill has a list of Drs some of which are more integrative it maybe worth emailing her for a copy). In addition to Thyroid UK, I have found Stop the thyroid madness along with Izabelle Wentz (thyroid pharmacist) and Suzy Cohen helpful.

    Adrenal tests

    Ive got some ideas from the thyroid diet coach re diet changes if applicable - Ive found my main culprits are gluten, egg, dairy, corn and the onion family (I eliminated the foods 1 by 1 for 10 days to see if I felt better. If I felt no different then I continued to eat food, if I felt better I eliminated the food for 6mnts. Now I can tolerate bits here and there so it not too bad (coconut is now my friend)! Also it maybe worth checking candida - the test below may give you an indication.

    Definitely push to get a copy of your results. I was refused for years and then I got access to them and took things into my own hands. My vertigo is so much better and I've stopped falling up to 10 times a day. For me T4 meds was not good for me. I'm now under an endo and he agrees I need NDT/T3 combo unfortunately my GP will not prescribe it. Good luck and I hope you feel better soon.

  • You poor thing I can sympathise,,after being under the immunologist for a year with suspect herpes zoster virus, all test came back negative, are you at menopause age (sorry if not).

    I had to stop working could not cope with the complete Lethergy and illnesses, I am 51 and have been menopause for 4 years plus the peri, it's difficult getting a proper diagnosis keep going back to your gp, I did till I got some proper service. I also have meneries disease, and thyroid problems.

    Rest when you can and I hope you get some answers soon. C

  • Hi Scampi1 thanks so much for your kind words and reply I'm so sorry to hear what you are going through . I am 37 and will defo keep questioning my gp see if she would only change my thyroxine tabs and increase my dose I do believe that's all it is . I can sympathise with the ear problem as I take vertigo so know only too well how awful it is . I'm. Not sure if this will help but I get cranio therapy when I have bad vertigo and it really does help with my balance and strength well it did until now . Hope you keep on at your docs too and hopefully see some relief soon :)

  • Hi Angie, I too have just had a letter today from my Endo saying that I do not have any adrenal problems and that he tested for viral antibodies and found very high levels for glandular fever hence I now could have CFS. However he is going to try a trial of additional T3 to see if it helps with my symptoms. Although I did get him to test for thyroid antibodies to prove my Hypothyroidism (Hashimotos) . Which he has not agreed and put in writing. I just need to get the right course of treatment. I wish you luck..... I am two years now down the road of a diagnosis much better than I was but still not quite right. I do believe I will get there eventually, I just feel that it may have to be under my own steam.

  • Hi Slower _ slower , aw poor you really hope you get some relief soon . You must be so exhausted . It sounds like you have a good endocrinologist who actually listens which is good . Really hope you feel better soon and thanks so much for taking the time to send me a reply :)

  • Sorry a correction he did agree that I had hasimotos cant type a little bit foggy headed today.

  • without all your actual results its hard to help but i never ever believe the ME excuses

    insist on getting copies of all tests and post them here then we can all help

  • Hi reallyfedup123 thanks for your reply . I'm really hoping tomorrow that results show something as I really do think it's my Thyroid and adrenals . I have cut out gluten soy and wheat to see if something gives me energy and help me lead a young life again . Thanks I will post results if the receptionists tells me the range :)

  • The adrenal test the doctor will give you, just checks they Re working, but not how well. the test to go for is the saliva adrenal one over a day. Its about £70 and you deal direct with the lab yourself. I used Genova diagnostics. Details under testing on the website. How ok were your b12 results? Doctors say they are ok if they are merely in range.. You really want the b12 at more than. 500.. In Japan they treat at 600 but in the uk you wouldnT get treated with a b12 of 200, although you would get symptoms.


  • Try to get a copy of your blood results (also the vit. D). Sometimes everything is not right and it comes all together if you treat it. It's possible that it is just your thyroid. But deficiencies are very common and if you can heal them maybe you feel a bit better.

    My B12 level was 190 and they told me that was perfect. I knew better so I managed to get injections from another doctor. Now I use tablets that go under the tongue in a high dose. Also had a vitamin D deficiency, now it is good and I'm still taking high dose vitamin D every day.

    There is a lot more, vitamins and minerals are so important and it's not uncommon that you have multiple deficiencies. Try to get them tested, it's your life and body.

  • I agree with the importance of sorting low vitamin/minerals - especially B12 for balance issues - a colleague's Mum with Pernicious anaemia was told to have Vit D infusions first or the B12 wouldn't work.

    Angie - What were you recommended for Adrenal exhaustion?

    I was repeatedly told by blood work was 'perfect' too (so was I imagining feeling ill?) - a TSH of over 5 is not normal for me (although just within lab range). I bought a Vit D test (£25) it was low so I supplemented, made a big difference to my pain and mood. J :D

  • Hi Sparerib thank you so much for replying . My vitamin D was low last year and I was given D3 and I couldn't take them as they gave me muscle weakness . I just started taking one tab of vitamin D per day now . My mum suffers from pernicious anaemia and she's more energy than me and she's 76 lol!! I was never told to take anything for adrenal exhaustion . I'm just taking vitamin b1b3 b5 one vitamin c tab and floradix which I find hard to take that's about it . I'm just so exhausted dizzy and weak and sore muscles . Thanks so much I appreciate any advice :)

  • Hi, if you can get your recent tests inc. B12 and D3 folk can comment and perhaps help...

    I'm just guessing those 2 are low, as we do tend to have low levels here in UK, as well as low iron/ferritin & folate - just for starters .... I have seen various iron supplements recommended (usually with vit C for better absorption, as you are taking).

    I can't help but wonder what your mum's symptoms were pre-diagnosis and hope she is having regular injections. A lot of folk say avoiding gluten helps too (reduces inflammation/antibodies).

    I can relate to your comment, I became weak - couldn't even lift a saucepan! everything crunched, tight calf muscles and biceps 'spazed' - I'd wake up feeling I'd done a marathon! (low Vit D =controls calcium). The pain etc (especially shins in my case) became worse before it got better - which took 3 months of 3-4000 iu D3 drops - I now make sure I have related magnesium (epsom baths) and K2 too (occasional Brie!) & B complex. It's a bit of a minefield, but any deficiency impacts on health/Thyroid function. J :D

  • Hi Spare rib , I just wanted to let you know I got my thyroid results . TSH 0.98 t3 2 T4 16 . They wouldn't give me my cortisol results said only the gp who ordered them was going to speak to me on Monday so what that means I have no idea lol!!

    I asked mum how she felt before she was diagnosed and she said it felt like her feet were not touching the ground and she was so exhausted . I took 75mg last nite think I'm going to stay on that dose see if there's an improvement as 50mg I feel is too low to b on for two years . Thanks

  • Sorry only just saw your reply - well done for getting results! Although the TSH looks good less than 1 it isn't necessarily a good indicator of how you feel (was the test taken first thing?) - it's difficult to say about T3 & T4 without ranges - the 'free' (available to use) 'FT4 FT3' are better indicators - here's my local lab ranges for FT4 (11-23) & FT3 (3.5-6.5). - I'm in the UK, they may be different from yours.

    Not being funny, to coin a phrase, but we do tend to be prone to family illnesses it just takes a few triggers (like other illnesses/viruses/deficiencies/stress) to start them off - your vertigo 'screams' low B12 to me - but I'm no doc! I hope your appointment on Monday is helpful - the receptionists at my surgery can't give out results over the phone - but they can do print outs (a doc may have to agree first 'tho) J :D

  • Hi Spare rib thanks so much for replying really appreciate it . I'm trying to stick to 75mg of thyroxine instead of 50mg as hopefully that will help. Aw iv had vertigo since I was 22 comes and goes but this time it has stayed lol!! I'm taking floradix so hoping that will help and going to get ferritin from chemist tomorrow . Yes I would imagine they are the same range . I live in Northern Ireland but it's still uk so should be the same . How are u feeling now ?:) thanks . Angie

  • Yes sorry test for both cortisol and tsh was first thing in morn and I didn't take thyroxine the nite before or any tabs :)

  • that's good then - you have a base level to compare future results.

    If you're taking an iron supplement I'm not sure if you need to take ferritin as well (it's stored iron) but Vitamin C helps absorption of iron (and also constipation from some iron tabs)

    I have a B12 'boost' spray which I used now & then under my tongue - you can't overdose on B12 it just gets excreted - many in the USA use it as a daily pain-killer - about a quarter of hypothyroidys also suffer from low B12 (it's usually synthesised from meat by your gut bacteria, but if they've been wiped out e.g. by antibiotics or you are a vegetarian then you have problems - cobalt is needed to digest a meal) There's a good video from Dr Osborne which explains it well.

    My GP suggested I had CFS/ME right after my Thyroid op (I have told this one many times over!) I don't - although symptoms are similar, I just have half a Thyroid to function...

  • Hi Spare ribs , that makes sense about the B12 as since last Christmas I think I have had seven or more antibiotics so my b12 must be lower than it was . That's brill about the spray I must get that. Gosh you really have been through it too I'm so sorry to hear that hope your ok now :). How would I know if I was on too strong of a dose of thyroxine as I'm worried that I'm taking too strong a dose but don't know what else to do . Thanks so much :)

  • In France, I believe, after a course of anti-biotics you are given pro-biotics to re-populate the gut flora - (perhaps GG can verify this?).

    Meanwhile, on holiday in Egypt (never again) I was given a horsepill 2 day antibiotic (for pharoh's revenge) along with the pharmacist insisting I take 2 packets of a million or-so pro-biotics, they ALL seemed very insistent there... (I was very dubious/wary at the time, so drank that horrid yoghurt instead, eaugh ).

    Going from 50 to 75 Thyroxine may not seem much, but may be enough for you to feel better - 50mcg is considered a starter dose for someone under 65 - folk tend to feel better for a while then 'plateau' as the pituitary gland's signal feedback loop catches on to extraT and produces less TSH accordingly. However if your Thyroid is not functioning at all it needs a full replacement dose - which is typically around 100mcg for a 7 stone person (double that for me!). I believe this is why docs are forever trying to reduce the dose in the hope that Thyroid function will magically 'kick back in'.

    Here's some Hyper symptoms to be aware of...

    but please consider Dr Lowe notes about many who had palpitations when the normal metabolic heart rate 'kicked back in' with a bit of a flutter. But, in my very limited experience (not of Levo but NDT/T3) I just cut back a little, say every other day and make sure everything else is up to spec.

    e.g. low iron can also cause palpitations, fatigue & pain

    also low Vit D - pain, muscle spasm, controls calcium twitches

    B12 nerve problems, ataxia, gut problems - sorry the list goes on - but you CAN sort vits & minerals, especially as doctors can't be bothered. :D

  • Hi Spare rib , that sounds like a nitemare what you went through in France that's terrible . I'm on the 75 mg since thur now and actually able to stick it still a bit dizzy n weak n not sleeping at nite but hopefully this dose kick in soon . I'm going to ask again to get B12 check as I have been on so many antibiotics . I forgot to say I have discovered two fantastic books one is called the Grain Brain and it's by a neurologist about how the gut and brain are linked and the other is by Doctor kharazzian called why do I still have thyroid symptoms yet my tests are normal . They are both fascinating :)

  • Thanks for that, as I already know of Dr Datis Kharazzian- I've have spent about an hour looking at David Perlmutter's site & videos (Grain Brain author). just one link vitD.... (70ng/mL= 175nmol/l)

  • Hi Spare rib , no probs thank you for the link on vitamin D I think my GP defo needs to test that again . I went for a tiny walk yest and today totally shattered so something's still not right lol!! I have also been looking up the Auto immune summit it's fascinating too with doctor Anne Myers .:) thanks

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