After reading online about the many symptoms of hypothyroidism i was so so confident i had it, insomnia check, tight throat check, feeling weak especially in my thighs check.. i had my GP tell me my results were normal BUT another doctor who did my blood tests gave me these results a week later:
My TSH is 1.64 (normal apparently)
But my T4 is 22.1 which is slightly over.. but only just
I am unsure what i have going on with my body and where to look next.. i have all these symptoms ranging from:
*clicking and snappy joints (first symptom i got 2 years ago)
*weakness (another symptom i got 2 years ago... especially in upper legs and upper arms)
*shaking arm sometimes even in a relaxed position (i had this the other night)
*tight throat like strangling (these seem to come along with the palpitations)
*Palpitations/chest flutters that will come and go..
*headache.
*fever and chills.
*neck stiffness.
*tiredness fatigue
*muscle pain.
*achey joint/muscle pain.
*nausea
*Personality changes (slight)
*bad memory and confusion
*dizziness or feeling a weird head feeling
*slurring words (rarest of the symptoms, sometimes im fine though and other times not)
Is it worth getting a lyme test done? and where do i go about it? Does anyone think these sound lyme or thyroid related? The feeling of dizziness is the weirdest symptom of all.. sometimes i feel like im waiting to pass out.. just as to get diagnosed! I am stuck on where to go from here.. Thanks for any help.
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jaycool
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You had your FT4 measured but not your FT3. T3 is the active hormone your body uses and some people have a conversion problem, which can lead to the build up of reverse T3 - which could cause some of the symptoms you describe. If necessary get your FT3 tested privately.
Also, did your doctor measure your thyroid antibodies (if you have Hashimotos, for example, you could swing from hypo to hyper and TSH/FT4 testing won't give you the whole picture)? Also, were your iron, folate, ferritin, Vit D and Vit B12 levels measured?
If not, ask for them to be done. If they were, ask for a print-out of the results so you can see for yourself if they are well in range.
Hi again Rosetree. I finally got the results for DHEA/Cortisol.. i posted a new comment at the very bottom of the page if you wish to see them, appreciate your comments on it. Cheers
As Rosetrees says, there are other things to check too. One of the things that most ressembles thyroid disease is B12 deficiency. See b12d.org/b12-signs-symptoms...
With all those symptoms you describe something is definitely going on.
Thank you for all your replies and advice.. this truly has baffled me and left me so weak that even typing nowadays seems hard enough!
@rosetrees
I have always had a sneaky feeling about the adrenal and cortisol thing because i had read something on that topic giving similar symptoms to thyroid issues.. i have to admit that i tend to have a lot of symptoms i would define as 'fight or flight' where i have noise sensitivity and get moody/aggressive easily.. and i wonder if what your saying here controls those things at some levels.
I will look into these links you have given and do some reading.. i have never done the saliva cortisol test.
I will get my T3 done privately, i need to find an endocrinologist for this right?
I dont believe he measured my thyroid antibodies.. my results for iron and calcium(same as vitamin d?) were normal.. the only abnormal things on my test were haemoglobin, RedCellcount, MCHC as well as LDH and the markers for liver damage (i have liver disease). Albumin was 50 which is the threshold.
Folate and Vit B12 was not measured.. i do eat cereal which contain Vit B12 and Folate but whether that would make a difference i am unsure.
I have a print out of results for many blood tests done recently.. but some of those you said are not on that list. i do not mind posting them here if you want to see them all.
Jaycool, Rosetrees may not see your response. This forum doesn't support 'reply all'. You need to click on the orange Reply tab underneath Rosetree's response to you and submit by clicking the orange Submit reply tab. You could just refer Rosetrees to your general reply and she will receive an email alert.
You don't need an endocrinologist to order FT3. Your GP can do it or you can order it privately from Blue Horizon and Genova via the link I supplied earlier.
Ok thanks, i will reply directly to her and let her know i left a comment above.. I might consider going with Blue Horizon or Genova.. how long does it take to get the test results? I am based in the UK.
Never believe a doctor who tells you that your results are "normal". Always ask for a print out. Your iron needs to be well in range, not just bottom.
As a matter of absolute fact, the ranges used are not called "normal" ranges - and any doctor that uses that term is wilfully and knowingly misusing it. The ranges for most tests are the 95 percentile range. In other words, simply the range that covers 95% of the population. They are misused by doctors to ensure that only 5% of patients can ever be treated for a particular condition.
They ranges take no account of where in the range you, as an individual person, become symptomatic. That should be the doctor's job, but most ignore symptoms these days. It's easier.
Noise (and light) sensitivity are classic adrenal symptoms, as is being in fight or flight mode - that possibly indicates low cortisol with your adrenals producing adrenaline to compensate. That's what mine seem to do - or did. But don't guess, order the test. I've seen a few people who guess at low cortisol, treat themselves and get worse because, in fact, they found out on testing that they had high cortisol.
Definitely get your B12 level measured. It needs to be well in range.
As for moody - I'm the mood queen (or was), especially when my period was due. I'm post menopause and my adrenals are better controlled. I'm turning into mrs calm. It's hard to get used to!
I should add that if you think you might have Lyme Disease my understanding is that the only effective test is done by Igenex in the States.
Thanks for getting back.. the moody thing is more because of being less tolerable.. usually i am very tolerable.. i really do question if for me this is just psychological and my physical symptoms (pain) are making me grouchy as a result.. i dont know. I just dont feel myself..
Anyway i did the tests on those links suggested.. the adrenal test came back 48 which is only a little over.. And the vitamin B12 was '56 is >20 Follow Treatment Pathway - deficiency established'.. So trying some B12 supplements is definitely a good idea..
My iron is well between, 20.6 to be exact.
I see your point about the normal range thingy.. and i feel similar about the issue.. i have read some stuff online this week and i notice it mentions a lot about some people having abnormal levels even if their TSH and T4 is supposedly normal (by doctors standards).
I am going to look into the 'how to's of how to get these tests done now.. i believe the T3 test could reveal something, my throat is just so heavy and tight (it feels like a sore throat a bit) so i am convinced something is going on with my thyroid.. sometimes i suspect it might be due to some emotional trauma overload i had some time back..
I understand that you are measuring your mood changes according to your normal. The trouble is that feeling generally very unwell means that slowly but surely our personalities are shaped by this to a small extent so the illness becomes us. If things can be excluded then this helps us take control over our symptoms rather than being controlled by them.
So I think you should get the test done for Lyme if this has been suggested. I had it done recently along with MRIs, nerve conduction, other serum bloods and a lumbar puncture (7 attempts at a tap meant the results were contaminated). All were normal and I'm none the wiser for this really. But it's good not to be left wondering whether Lyme might be slowly becoming more destructive untreated as happened with my cousin. Do you live in an area with deer or tics or are you aware of tic bites in the past? This could affect the likelihood or not of whether you have Lyme disease.
I am very similar to you in that I put many of my symptoms down to stuff that's gone on in my life now. I've had four years of trying to come to terms with a diagnosis of seronegative RA - taken many powerful drugs as advised and had some horrible reactions - and also been on Levothyroxine for 12 years or so for Hashimoto's.
I still have many strange and unexplained symptoms but I am inclined to blame these on the drugs I've tried or on anxiety now. I've come off all the medications (apart from the Levo, B12 sublingual tablets and AdCal D3) plus magnesium oil spray and Epsom salts in the bath) to see what's what and am already starting to feel much better. I wouldn't recommend anyone take medications or supplements unless they know what they are taking them for and feel that the side effects or problems withdrawing from them are worth it.
If it turns out that I do still have RA (and it doesn't go away usually) then it can out itself, same goes for the rest now that I've excluded stuff such as Lyme and MS. I do hope this helps a bit.
Sometimes i feel tempted to go to ER because my discomfort and pain has become so bad. My neck hurts simply because of turning it to bend down and grab something off the floor.. i just hope that it is infact my spine causing all these problems but it sounds like two things happening at the same time.
I just want to let you (and let everyone know) i did go for an MRI last Wednesday on every part of my body minus my chest, arms and legs.. this is how seriously i take this.. at one point i thought it was possible my spinal fluid had become infected because of all the fizzing noises i hear in my back and upper neck.. a lumber puncture is a possibility in the near future.
I believe my MRI results will be back Monday morning, if it takes longer than that then i have no idea why it has taken them so long.. i hope i can finally be diagnosed with something but i cant help but feel this is more than a back problem and yes maybe something with my body is out of whack that is causing all the other symptoms like nausea and fatigue.
I used to do a lot of nature walking, lots and lots of it, even in long grass.. i dont remember having the bullseye that ticks are supposedly meant to leave but there have been many times i have been bitten by bugs on my walks.. i believe i have been bitten by harlequins. I dont go near deer often or animals but i have been to deer parks in the past, however if i have been bitten then the mark must have been on my legs as i dont recall one on my face or arms.
I did have an EMG and nerve conduction studies about 3 months ago, all came back normal on these tests so i am hoping that clears out a lot of possible things.. but i know deep down something is slowly killing me, my muscles and bones feel horrible, i just wish i could have the life i used to.. i will keep pushing for answers.
I am interested why it took 7 times to do your lumber puncture, did you get the full answers regarding your own health problems or do you feel you are still searching for answers?
Seronegative RA? What is really weird is that one of my symptoms is stiff and snappy bones. Does that sound like RA?
My story is long and complicated so won't bore you with it here. RA usually makes itself apparent by boggy, hot, swollen and very painful synovitis - but it can also make sufferers feel very unwell with flu like stiffness and pain. It's a systemic autoimmune disease and doesn't always show in people's blood - this is wheh it's classed as seronegative.
However there are about 200 types of arthritis - only one which isn't inflammatory/ autoimmune but is by far the most common type and this is Osteoarthritis (OA). Most people suffer from this as they age to a greater or lesser extent.
Re lumbar puncture - for some reason the doctor just couldn't get a tap from me. My theory is that I have a lot of arthritis in my lumbar region and this has caused fusions but no one has looked into this for me. It's just put down to wear and tear from child bearing etc. The spinal fluid was contaminated by the trauma of the tap but my serum blood results were normal so none the wiser - they call mine idiopathic now.
RA doesn't affect the spine but Spondyloarthritis does - this is a Psoriatic Arthritis and Ankylosing Spondy and these are both seronegative inflammatory arthritis's. Unless you have very classic symptoms of all these they may well go undiagnosed or dismissed as OA/ Fibro so worth reading up about to prevent this from happening.
You could easily have been bitten by a Lyme tic without knowing. Lyme wouldn't show up in mri or spine or nerve conduction until fairly advanced. I would certainly get this ruled out of I were you.
I really dont mind.. feel free to share your experience, your story. But if not that is fine too. We are all in the boat together.
My bone issues are rather simple in that they are rather snappy, i could best explain it as there being little fluid or cartilage and my bones in my spine crackle a little.. and my muscles have ripping noises in some places. I have noticed my hips clunk sometimes.
I get stiffness but pain is only brought on when i either lean over or bend over in some kind of way, pain doesn't happen as they snap.. For example i dropped something on the floor today, lent over to pick it up and my neck was hurting after it.
I will get lyme's sorted.. I see that there is the ELISA test and western blot test then another test called IGINEX? Which test do i take or purchase? Is one better than the other?
I don't know. I take it you are US based? In UK we get this done on NHS if they judge it necessary. I think mind was Cryoglobulin or something. Snappy joints could be anything to be honest. I've given up even acknowledging the snappy ones - it's the fractured feeling ones I see as RA. Take care.
I am in the UK. My issue is that often when i have asked docs for things in the past they have not given me it, the last time a doctor did a physical (as i wanted to be diagnosed with CFS) he just sent me away with painkillers.
Cryoglobulin? I look it up. I am just afraid that i am going for the wrong test thats all, but my belief is to get the ELISA test from what i have read online for Lyme's.
Thanks for taking time here to help me out, its always appreciated, take care.
Sorry it was your referrence to ER rather than A&E that made me think of US. I thought you had been offered a Lyme test - so why do you need to order it? If you are able to go private then the biochemist in a private clinic should be able advise you on which tests to have - based on your synptoms.
Yeah A&E is what i meant. The ER thing is a result of my inability to think straight.. nowadays i make many mistakes in my speech.. i substitute certain words if i cannot think of them or quickly enough.. i had to ask for a GLASS of tea the other day.
I have not been offered one, i need to find someone who will offer me one.. I can do private.. the issue is that sometimes you can give all the symptoms that reflect Lyme's and still not get offered the test for it.. i guess will just have to give the list of symptoms and then directly ask for one. I dont think many doctors know about Lyme's enough so i feel i am going to have to push to have one done.
My cousin found out that she had Lyme after years of struggling with arthritus and fatigue. She lives in rural France though and has a brilliant very forward thinking GP. She doesn't know how she contracted it but it is too longstanding to cure now. This is known because it was also picked up in both her young sons so must have crossed the placenta
Sorry to hear about your cousin, its dreadful that this disease is often going under the radar so much..
I actually made a list of everything happening around the time i got this illness.. I believe that if i got lyme's i got it sometime between 2012-2013.. the fact i got this weird illness suddenly happen in a warm august 2012 makes me believe that this was not a virus and was something immune related or lyme itself..
But i DID recall what i ate that day.. i also recall going to the doctors (medical centre) the previous day so whether i caught an illness from someone in the medical centre is an interesting thought.. i was going through exam stress then too i guess.
Back then i was going for very long walks all over the place.. meadows, rivers, canals, wildlife parks most of which i was doing on my own.. it really could be anything. It could also be i was stressed about exams which added to my trauma.. i just hope this is reversible to some degree whatever it is.
If it's any help, I had the lyme test done on the NHS by an endocrinologist, along with a whole battery of other tests. Your GP should be able to refer you to one.
Hi Kivie thanks for the comment. I will probably look into getting some tests with my doctor, i think now that i know my cortisol levels are low he will probably send me off for more tests.
I am also getting blood tests privately for some other things such as Lyme's, RA and connective tissue disorders. I have a good feeling right now that this may be reversible being that my essential blood work which checks a bit of everything did not come back with anything of any real concern.
Do not go down the psycological route. It's very, very doubtful that your symptoms are 'just in your head', but that's what a lot of doctors want you to think. It's a medical get-out. Although, having low thyroid hormones can affect your brain causing confusion, depression, anxiety, memory loss, etc. But it's not a psycological problem as such, it is an endocrinological problem. You know your body, you know when something is wrong. Stick to your guns. I firmly do not believe in hypocondria!
Good that you are taking some B12. It's something you can't over-dose on, and the higher your levels the better. But it would be helpful if you could give the ranges for these tests because they vary from lab to lab, and there are often different tests with different ranges.
As you are taking B12, it would be best to take a B complex with it because the Bs all work to gether, and we need to keep them balanced.
Emotional trauma, just like physical trauma, can have an effect on the thyroid and the adrenals. It is well-known that people who were abused in their childhood, and women in an abusive Relationship often go on to develope such problems.
I totally agree.. its a cop out.. in fact i met a doctor the other day who told me that there is a inability for doctors to think outside the box nowadays and just 'listen', i liked this.. I have nothing bad to say about my main GP except that he is possibly naive about the thyroid test.. i have met many doctors down the past who used the template responses of "your too young to have this" or "it will be OK, just take some painkillers". These are also cop out answers i noticed.
You are right. I dont believe all the symptoms are psychological in origin.. i know something is very wrong with my body.. of course insomnia and other things may be things that came about because of this illness but i know the real issue is something physical in origin for sure..
I will let you all know of my MRI results as soon as i get them back.. then i will think of plan B which is to get ALL these blood tests done this week. The emotional trauma was basically that i witnessed someone die in front of my eyes, i then went on months fearful of death.. i know that sounds silly but this may have triggered something in my body.. it may be i have some kind of chronic fatigue mixed with something else.
However i do wonder if this had anything to do with it at all since the first day i fell ill with weak muscles/bones etc was on an evening when i felt perfectly fine watching a movie. It may have been that my immune system was weak making it easy for me to catch some deadly virus. I did at first think that it was something i had eaten as the first severe symptom happened as i was eating.. but no one else in my household was ill and we all ate from the same food.
Thanks for the suggestion. B12 and B complex.. i will try those together.
Jay, chronic fatique is a low thyroid symptoms. Just diagnosing people with Fibromyalgia and CFS is also a cop-put, because they are syndromes, not diseases, so something is causing them, but doctors Don't search for the cause, just tell people there is no cure, and here, take these pain-killers and antiDs!!!
I Don't know if the on-set of your disease was caused by your traumatic experience, but anything is possible. Thyroid disease starts a long time before you get any symptoms, and the symptoms appear before the blood levels get low enough (high for TSH) for doctors to notice. So, it could be that you were hypo for quite a while, but the shock brought the symptoms on.
Anyway, get all the necessary tests, and we'll know more about where you are at the moment. Take care. x
I am unsure if trauma is what gave me what i got but i believe if it was just trauma then my health would be getting better over time.. for that reason it may have happened even if i did not go through that experience. I think the word 'shock' definitely describes how i felt 2 years ago when i first got it, i found it hard to get up in the mornings, felt like nothing was worth living for and went through a phase of lying around.
I agree with you entirely about CFS and Fibro Greygoose but I don't think its all misdiagnosis of thyroid conditions only - it's failure to join up the dots, to look at the whole picture. Many people with inflammatory arthritis such as Sjogrens and Lupus and types of Vasculitis are also misdiagnosed with Fibro and ME. If anyone tries to diagnose me with these i will not be answerable for my actions (sort of a joke - I'm not violent but could become
verbally unpleasant!). I agree these are cop out diagnosises - as is the term idiopathic. They are an admission of failure on the part of the medical profession. In my experience they use these labels for people who either have unmet psychological needs or for people who have complex , sometimes very rare autoimmune diseases which don't show up in the blood - or which they can't understand. rather in the way that IBS is used to diagnose people with anxiety issues - but also people who turn out to have Crohns, Ceoliacs,
stomach or bowel cancer - rather than hypochondria. Once you've landed that label it's almost imposible to persuade them otherwise.
OK, but this happens all the time. I say something about syndromes and lazy-doctor 'diagnoses' and I always get at least one quasi-aggressive response on the lines of 'it's not all hypo!' No, it's not all hypo. These are catch-all 'diagnoses' for any bunch of vague symptoms where the doctor can't be bothered - or is too incompetant - to look for the cause. But when someone has already been diagnosed with hypo and is obviously Under-treated, that is the first thing to rule out, Don't you think? Rather than letting them go on believing they have a mystery illness with not treatment and no cure. Of course, there are some people - I know several - who cling to their diagnois for 'fibro' or 'CFS' for dear life. I Don't know why, but that is the way it is. I only try to help, not brain-wash people.
However I think I'm right in saying that Jay hasn't had a diagnosis of hypothyroidism yet and there is therefore a danger for her of finding a disease and fitting the symptoms to it - as many of us here and on other HU communities have done too - myself included.
This fitting of symptoms plays havoc with us psychologically and then things become even more confusing because anxiety - whether primary or secondary - kicks in and complicates things further for us and furnishes our doctors with the lazy diagnosis escape route more readily than ever!
If you read my response to yours properly I actually start by fully agreeing with you about CFS/ Fibro as lazy doctoring. This hasn't happened to me yet but I'm always very alert to the possibility when they can't stand the sight of me anymore!
I do have a longstanding diagnosis of Hashimoto's and am often told here that many of my symptoms, put down to RA and other connective tissue problems by me - could be because my thyroid problems are not properly controlled by my lazy doctors. This has caused bad feeling between me and my doctors in the past so I'm careful not to think of them as lazy now - just overworked and rather uncaring where chronic illness is concerned. Thinking of GPs as lazy hasn't actually got me very far I have to say! Learning techniques about how to play them well would have got me a whole lot further I feel.
I also think it's helpful to know that thyroid disease often goes hand in hand with many other conditions - especially the connective tissue/ autoimmune kinds - and putting everything down to thyroid is too tempting and potentially very dangerous because other diseases can do much harm to the joints, organs and central nervous system if they go undetected - as they sadly do all too often. So if your thyroid bloods are within normal range - even if normal is questionable - why not look to other causes before coming back to query the medical profession's idea of normal?
Again sorry if I've inadvertently riled you but I just think Lyme and many other conditions should be excluded before the questioning of our doctors starts in earnest.
I am not arguing with you, just explaining. In fact, I agree with you! But, have you ever found a doctor that will test for Lyme??? I doubt if many of them know what it is. It's difficult to get them to test for anything, hence the problem we have. As you know. Are you in the US? Because things are different there.
I had one doctor who wouldn't even 'diagnose' me with fibro! Because according to him, with a TSH of 9.5, there was absolutely nothing wrong with me! That goes beyond lazy, that is just totally ignorant!!! But, then again, that was in France, where things are different again. But a lot of my French friends have been 'diagnosed' with Fibro/CFS, so things aren't that different! lol
Well my cousin has been diagnosed with advanced Lyme now by her excellent French GP and is receiving treatment - both naturopathic and antibiotic through the French NHS so there must be exceptions. I myself have just been tested for Lyme by a consultant neurologist (NHS) and had it excluded from the list - I didn't request this he just decided.
I am also to see a surgeon about upper GI problems and a dermatologist for a skin biopsy to confirm and establish the severity of the idiopathic small fiber neuropathy. Some of these things I've asked for and some not - the lumbar puncture was a nightmare so would never have one of those again unless on death's door and it wasn't my suggestion either.
Nothing has flagged up for me yet but they have agreed to keep searching at my request. I can't say I have much faith in doctors per say and my list of symptoms reads like text book CFS so perhaps this will be the outcome now when they've ruled everything out. I'm still pushing quietly to have a certain type of Vasculitis ruled out though. I write my list of symptoms for my rheumatologist and highlight symptoms I hope he will make sense of at last by himself. I doubt he will though!
I've just come from seeing my GP - and apologised for sending her a bossy email last week when feeling terribly unwell. She said she just ignored most of it anyway! She says she hopes and believes that one day this will all just go away and I'll be left with just dry eyes and a bit of osteoarthritis to tell the tale. Not very scientific but as my husband points out - there are advantages to being labelled with CFS if you are terribly drug intolerant as I am. It means you look after yourself extra well and can self treat/ manage and just use doctors for specific symptoms and prescription meds. I don't believe CFS exists as such but I do believe it can be quite a productive diagnosis for some. A friend clings to it despite having all the hallmarks of Psoriatic Arthritis to me - but she doens't want the drugs so prefers to stick with her CFS and self manage.
Oh and I chose the full blood count today to include my CRP, ESR and renals and she took this on the chin. I treat her as an equal or a working partner and she responds accordingly. She was furious with me ages ago about my asking to get my FT3 taken because I'd been advised to here. But now my TSH is always suppressed it is done automatically.
Looking back I would have been better off getting it done privately at the time because she's always far more useful when she's on my side. We have to choose our battles carefully!
So you are in the UK? Doesn't sound like the treatment most people talk about. And I Don't know where your cousin lives in France but I've never met a doctor like that, and I've moved around quite a bit and seen a lot of doctors. And I've never heard of naturopathic treatment on the French NHS, and I've lived here for 40 years! You must just be a Lucky family.
Greygoose I'm not going to bore you with my medical history but I live in a remote location in UK and have got very limited access to medical services. I do volunteer work for a health organisation which is part of the NHS and Care Inspectorate and I know from seeing what others receive that the service I get here is very limited. Partly my choice for living here but I do my best to try and improve things for others through volunteering.
I'm certainly not blessed with good consultants or good access so don't go getting ideas that I receive better treatment than you or anyone else - probably rather worse in many ways. I can't afford to travel to pay for private clinics so I just have to make the best with what I've got. I'm not a natural wheeler dealer so I tend to just ask a lot of questions and learn a lot for myself by using HU and reading about my symptoms extensively.
I am now learning the hard way to find ways round brick walls and how to pick and choose my battles with great care - and get as much advice as possible where these are concerned.
None of this has come easy but I know that in the past (recent past at that) I've fallen out with one of my GPs and one consultant and this has only served to make things much harder for me. So I've repaired some of the damage as best I can and am now looking hard into the best place to move to for me when my youngest leaves.
I think this is why I tend to advise people not to fall out with their GPs or to be overly demanding or go in all guns blazing - but not to sell ourselves short either. It's a very delicate balancing act that I've fallen off several times now.
And there is nothing lucky about my extended family - but we are all fighters and the kind of people who try our hardest to make lemonade out of lemons. My cousin has had a horrible time with Lyme disease which she didn't get tested for until it was far advanced and has now affected her young sons too as it crossed the placenta. She works out very intensively and rests a lot too in order to be able to keep going with very physically demanding work as a performance artist. She has obviously been lucky to have a very good GP but I'm not sure how much of this is down to good fortune or how much research she did to begin with. She will be very proactive I'm sure but gets on well with people naturally - she has to in her line of work.
I'm very sorry to hear about your cousin. I hope she gets the help she deserves.
Changing doctors is very easy in France. So, I've done it a lot. Most of them sneer at you and laugh at you and aren't very nice at all. Of the only two that didn't, one turned out to be a religious freak, and the other so abissmally ignorant that he didn't even know that women needed testosterone! How could you possibly get well with doctors like those! But I won't bore you with my medical history, either...
Experts on CFS in the UK are Dr Sarah Myhill, working with Dr J. McLaren-Howard, who perfected a Test for CFS, done at cellular level. They have proven, with thousands of patients, that their degree of CF, correlates with their Mitochondria Dysfunction. (mitochondria produce energy in all our cells) Dr Myhill has written a book called "It's Mitochondria Not Hypochondria" . Her web-site is packed with free info. My understanding is that she says CFS, from varying causes, definitely does exist, having measurable, physical symptoms, and it protects the body from further damage, as the mitochondria are not working properly.
Stoneym this is interesting and I would like to learn more - will look up this book. I am not apt to just write off conditions I know so little about or those who suffer from them - in case that's how it seems. I just think that doctors often use the labels of CFS and Fibro to put people who actually have serious autoimmune diseases off the scent. Not everyone has these things show up in their autoantibodies or inflammatory markers as I do.
I think i need to learn more about CFS.. Here i was thinking blood work 'always' had the answers but i have learnt that even blood work isn't always 100%.. i read some interesting article about parasites that live in our blood like little worms (gross i know) that are really microscopic that cause CFS, i really do wish i remember where i read this article.
This is a link and I would ask your GP to test both your Free T4 and Free T3 and antibodies. First is an excerpt:
What Abnormal Results Mean
A higher than normal level of T4 may be due to conditions that involve an overactive thyroid, including:
Graves disease
Germ cell tumors
High levels of the protein that carries T4 in the blood (can occur with pregnancy, use of birth control pills or estrogen, liver disease, and as part of an inherited condition)
So i will get all the Free T4 and Free T3 and antibodies done together.. cortisol,adrenals and all the others..
I might also look into Lyme after i get all done with these tests.. i used to be a nature walker back in the day.. i did lots of it.. so this is possible as well.
Going by the fact i have been catching every cold known to man for the past few months while everyone else in my household has only caught one or two makes me open to the idea that some Immune system disorder at play.
Jaycool I've replied at more length earlier in this thread but I just wanted to say that Lyme does make people much more susceptible to viruses and lurgies and it's important to get it diagnosed asap because in the early stages it is often quite treatable with antibiotics.
I'd completely agree with rose trees and get saliva stress test done and then post result. Cortisol problems interfere in take up of t3 and t4 etc can look normal or even pool in blood. As someone who has been diagnosed hypo for twenty years and m.e for four I am finally seeing improvement from hydrocortisone. My blood cortisol is high but my saliva test shows every th thing under range. I have been ver life limited and feel this is why. Good luck
Sulamaye. Thanks for dropping by and sharing your experience.. i hope my issues are similar so that i can start recovery as soon as possible. Do you feel all your energy and strength is returning? And how long have you been on your recovery so far?
I think the biggest give away for me is that i keep needing to move my t-shirt collar away from my neck like its strangling my neck. I realize most people with hypothyroid were reporting this as a symptom at some point. Nowadays i get more emotional more easily which i notice also can lead to the strangled sore throat feeling.. I also get so much belching right now which is like a hiccup/burp further down the throat.. which might be acid reflux related.
My symptoms started with an inability to get out of bed, absolute celluar no go. Then sugar crashing, tingling, thrumming, adrenalin pressing on my chest, insominia, reflux, tried eyes, startle reflex switched on all the time, total brain fog, could barely speak, couldn't walk more than 5 paces etc, felt sick in every cell of my body - none of it was like when i first got hypothyroidism. I learnt through bitter experience to manage my energy and after 3 years had got to the point where I could tolerate 1.5 hrs up and 1.5 hrs lying flat listening to the radio. By doing this my sysmptoms were less extreme but still my life was restricted, I could never tell from one day to the next how I would feel and if I pushed outside of that barrier i would quickly feel very very ill.
Then my GP slashed my thyroid meds because she is stupid and suddenly I was back at teh beginning. The lightbulb went on and I started looking at what can go wrong that doesn't show on blood tests. So reverse T3 and cortisol interaction etc.
Last summer I was ill like I had been 6 months after first hitting the wall. By Nov I'd been on T3 only for 2 months and was much better, however I kept hitting a wall and sugar crashing. I knew by then that my cortisol saliva was showing low on everything but I was trying Paul Robinsons CT3 method to try to support my cortisol production. I started on LDN which def helped take some of the swings out of my extremes, but still sugar crashing, no energy in chest and adrenalin like feeling was present. I started on Hydrocortisone HC after xmas, had a few blips trying to get the dose right, but now feel I am doing so much better. My mum has just died suddenly an dunexpectedly and the past 3 weeks have been hell but because of the HC what would have put me in bed all the time has been copable with. I still have to rest regularly throughout the day, I still am no where near normal, but my body has been very ill and patience is needed. I know I have to keep my routine but what I enjoy is that I do not feel anywhere near as ill, I can manage to do more when up and about - for example last week I cut my hair and normally would have to leave the clippings for my partner to clear up, but I managed to do it myself with out trouble - it is these little things I notice. If I can stabilise my HC properly then I am hoping to get some NDT in place. It's a long hard road, but I finally feel there is light at the end of the tunnel. All this has been through self medication.
Thank you for sharing sulamaye. I am very happy for you, I am so very glad that you are on the road to recovery. When you say tingling and thrumming what do you mean? Tingling feeling on your face, arms etc?
Insomnia, reflux and startled reflex are some things i get, it is like they came out of no where! Loud noises make me go a little crazy and moody.. bright lights not so bad. Brain frog, barely being able to speak , i relate there.. sometimes i am just there and someone is speaking to me and its like i have no energy to speak back, i just cant! Its horrible because i dont intend to be rude. Feeling nausea and finding it hard to walk is something i get too.
Most of my day is now spent sitting down.. i try to move around just as to do some exercise, i am on a diet right now that my mum is helping me with while my exercise is limited, i really could not ask for a better mum. My chest feels without energy too.. at times i was worried i was having a heart problem but my recent ECG showed to be ok so that gave me some piece of mind in the mean time.
I am in a similar situation that going to the hairdressers, socializing with friends or any shopping including carrying the shopping back is so much work, i would have to drag my body.. i can only barely just do the shopping.
I keep reading around about 'reverse' T3.. but i am unsure what that means. My guess is that it has something to do with total T3? Is this an important test to get?
I am very sorry to hear about your mum, my condolences. I wish you best on your well being during this difficult time. I am here for you.
Patience is definitely our best friend during this recovery.
There is definitely light at the end of this tunnel. I will keep believing there is.
I started with tingling on face years back but this is tingling all over and thrumming just feels like every cell in my body is vibrating a tiny invisible amount, like little motorbikes.
I would strongly advise u against dieting however much weight I've put on. Unless it is a high protein approach rather than a weight loss. Two reasons in my experience unless cortisol and thyroid working well you are just beating your head against a brick wall. Secondly, dieting is a stress to the body, it will put more stress on your system and upset your cortisol more, plus calorie lowering intake is one of the conditions that raises rt3. Rt3 is partly an evolutionary coping mechanism to reduce energy production at times of famine. So you will feel ok for a bit and then feel Iller.
Rt3. T4 has four iodine molecule the body knocks off one to convert t4 into t3, it is t3 that actually enters the cells to produce energy in the cell. Rt3 is when the body knocks off a different iodine molecule from the t4 producing a product that can not be used by the body to produce energy. It's the bodies way of safety checking and balancing out if it senses too much t3, however it can go wrong and as i said stress, dieting, trauma can up production leaving your tsh and t4 looking good, but your rt3 can be too high.
I've never had mine measured, finances, but I figured I would go t3 only to see the effect as if you go t3 only in a big enough dose it supressed your own t4 production and with out t4 u can't make rt3 so after a few months it clears any build up of rt3. I have been helped immensely by Paul Robinsons Facebook group to go t3 only, their expertise and support has been invaluable.
My first step if you Wd be to get cortisol saliva ASAP it is about £70 then u will know what u r up against. Of course all the standard nhs b12, vit d, iron panel etc R also v important.
The startle etc is normally a sign of cortisol disruption, the body tries to compensate with adrenalin, hence the racing heart, feeling like you've just stepped in front of a bus etc when someone's simply closed a door too loudly etc.
I see what you mean.. I will consider your suggestions regarding diet.
And get that saliva cortisol done asap. I will be back to report once i get my results.
"The startle etc is normally a sign of cortisol disruption, the body tries to compensate with adrenalin, hence the racing heart, feeling like you've just stepped in front of a bus etc when someone's simply closed a door too loudly etc." = Describes perfectly how i feel right now.
Just a passing comment.. Feel free to comment if this brings any ideas..
Last night i felt better than i have in a while just before i went to sleep.. however this morning i woke up with extremely bad stomach/abdominal pains.. my stomach was making weird noises, i had lots of gas.. next thing i felt something inside of me suddenly move down my body.. then i went to the toilet, without going into too much detail i had a very loose episode.. diarrhea.
As i might have already said above somewhere, in our household we eat pretty much the same stuff.. this diarrhea thing happened a few weeks back as well and i asked everyone if they had upset tummy and diarrhea after dinner and they all said no. In other words i am not sure if my stomach and intestines are working properly..
Prior to going to the toilet (when i woke up first thing) i felt terrible nausea accompanying this pain.. the nausea disappeared after going to the toilet, in other words passing it made me feel better all of a sudden. As i was on the toilet for 10 minutes i felt very dehydrated and sick to my stomach during the episode so i drank water.. i felt a bit over heated too.. I am unsure if that leaves anything up to discussion on what it might be.. infection, bacteria, virus, parasite, poisoned or some other thing..
I just use this information as sort of a journal of sorts.. I've had this quite a few times where i need to rush to the toilet and its happened in intervals over the last few years.. but like i said its bizarre that i suddenly feel a lot better once i pass urine/feces.
PS: Still awaiting MRI and blood work.. but i thought it would be a good idea to at least share this symptom because while it is inconsistent it has become more regular..
my only thought is that being hypo can lead to constipation, ironically really bad constipation produces a blockage and then liquid is what escapes round it - sorry to be so graphic but it's true - so when you are really constipated you can in effect appear to have the runs. I have experienced this and had to sit for ages still feeling like I need to go, however after some days i have then passed a very hard solid and realised I was in fact constipated. The other thing is that if t3 is not getting into all sorts of organs, heart, stomach etc properly these things don't work properly. I think the body cycles t3 when it is short so symptoms cycle and our naturally weak areas of our body give us the most bother.
Got my thyroid kit through yesterday.. through homebloodtests.
It definitely wasn't pleasant.. i noticed solid stool came first very quickly and after it all was liquidized, i think if there is a blockage its going on further up.. i have a noisey abdomen but so much belching as well.. I get blood in my stools, my guess is that it isn't pushing through very well and is possibly ripping the skin as it passes through (yack).. i have let my GP know about this.
I am having a bit of difficulty regarding this whole cortisol test thing.. i have ordered it but i couldn't quite understand what they mean by using APC courier to send the samples off rather than royal mail (i'm a bit lost there, i'm not the most street wise person).. When you get the test how are you supposed to mail it? Where do you take it? How do you send it off?
It needs to be sent guaranteed that it gets there next day by midday. So you get teh intsructions an dput all your samples in the freezer, then you can send them off when you are ready. The samples all need to be the same day, but you don't have to send them the next day if it's not a good day as long as as soon as you take them you put teh tube in the freezer with the ice block and in the bag. Then the day that you are ready you can either ring APC as instructed and they will come and pick them up from you - you get them out of teh freezer at teh last minute - or you can go to teh postoffice and send them via the guaranteed next day delivery. The APC is about £12 and the postoffice about £8 I think. I ended up going with APC just because they are used to handling the samples and know to get them there asap, plus I didn't have to go out which i s a challenge.
Just read through teh instructions several times until it is clear, take your time and don't panic, it does appear complicated at first when you have brain fog, but if you work through the stages it will all fall into place.
Thanks for the help and encouragement. It is hard with brain fog for sure. Oh i see now.. so you call APC and they come to pick up the sample the next morning.
I just sent off my thyroid sample an hour ago.. i was kinda amused to find that the lab that does it is just up the road from where i live.
It sounds like APC is probably less work for me so i will go with them.. my local post office seems like too much of a walk for these heavy legs and chest.
Hi all its been a while, been busy with some things.. but finally i got the results back.. here are my results i got back from the Advanced Thyroid Test.. they called these 'normal range' results.
If any of you can understand these results or have any feedback on whether something is abnormal in these results please let me know.
THYROID PROFILE 2
TOTAL THYROXINE(T4) 94 nmol/L 59 - 154
THYROID STIMULATING HORMONE 1.05 mIU/L 0.27 - 4.2
FREE THYROXINE 20.0 pmol/l 12.0 - 22.0
FREE T3 6.0 pmol/L 3.1 - 6.8
THYROID ANTIBODIES
Thyroglobulin Antibody 21.5 IU/mL 0-115(Negative)
Method used for Anti-Tg: Roche Modular
Thyroid Peroxidase Antibodies 5.8 IU/mL 0 - 34
Method used for Anti-TPO: Roche Modular
PS: The cortisol, DHEA, saliva test will be done shortly.. still awaiting MRI results as the report takes weeks to go through.
On the face of it, it doesn't seem as if thyroid is your problem. It will be interesting to see what the saliva results show.
I think I said above, if you suspect Lyme, the only test that I'm aware of that will detect it is done by Igenex in America. As it happens I recently sent off the test myself and am waiting for the results.
If you contact Igenex they will send you the test kit. You then decide which test you want, send it back with payment details. The nurse at my GP surgery did the blood test for me for £10.
Hi Rosetree. Thanks for the reply to the results. It seems then that thyroid is not the culprit (still have that heavy feeling in this tight throat of mine). If these saliva test results come back normal i will be definitely looking at lyme and nutrition/hormones next..
I am going to bookmark the igenex thing now, will be back with the saliva results at some point next week. Thanks
I only said that on the face of it thyroid isn't the problem! We know that nothing thyroid related is as simple as a few test results.
There could be things happening with your thyroid that don't yet show on the results - such as a small goitre forming, maybe. Which might explain the feeling in your throat.
Hi all.. its been a while, having been on vacation, losing my internet for a while and been delayed in getting the results i will now share the results i got from the DHEA and Cortisol Tests.. I had to chase Genova for the results but the important thing is that i got them when i did. Here they are:
DHEA Levels:
Mean 0.62
Ratio 6.08
Cortisol Levels:
Sample 1:.. 4.60 (LOW)
Sample 2:.. 3.00
Sample 3:.. 1.10 (LOW)
Sample 4:.. 1.50
Sum:.. 10.2
According to the results they said DHEA was normal but Cortisol was not in reference range those 2 samples. They also gave notes.. the highlights of the notes were them pretty much saying a degree adrenal fatigue is apparent with how low it was in the morning when i first wake up in regard to circadian activity. Low afternoon levels they say reflect a degree of adrenal fatigue esp in the area of glycaemic control.
I want to note one symptom i think is probably related.. whenever my sleep pattern changes my body doesn't seem to respond well to it.. i noticed that. And that prior to sleep (perhaps hours before sleep) my muscles weigh a ton which is abnormal, in other words if i want to go out drinking at the weekend till 3am in the morning with friends i cannot do it, i feel drained and cant last the night.. i think there is a good chance it may all be related.
Another note: When i first got the extreme sudden weakness 2 and half years ago i remember getting the weakness and illness just before bed time.. it really does make me think my body clock has been out of whack due to ever changing sleeping patterns. I was encouraged when i read a comment somewhere from a person who said "weakness that comes on suddenly is likely something to do with endocrinology and not likely neurological".
Can you add the ranges to those figures please. I know Genova have just changed them. Also, did you get your B12, iron, folate, ferritin and Vit D levels measured?
Iron, folate, ferritin were all normal last i checked when done 2 months ago. I can post the former results from back then if you wish. These were done privately.
My GP had my Vitamin D blood test done just over 6 months ago back and it was LOW but then he took it TWICE after that in a period of the 2 months following and it was normal again. I was in the sun a lot last summer so i was kinda confused why my vitamin D was low. Unfortunately i was not given the actual results or ranges.
As I haven't done B12 yet.. i was going to wait till i get paid next and get a full/multi mineral panel all in one go, that way i can check my vitamin D again and get the actual number this time.
Even the cortisol results that are in range are low. I'd suggest you research two options. One is looking at glandulars, such as Nutri Adrenal, Nutri Adrenal Extra or an Adrenal Cortex Extract (ACE). The other is looking at hydrocortisone. Contrary to popular belief taking HC doesn't stop your body producing its own cortisol, so long as you dose appropriately. I suggest you buy the book "Stop the thyroid madness" (book 1) as this has a lot of information on dosing with HC if you decide to go down that route.
As for iron, folate and ferritin. "Normal" according to who? As with everything else, you need to see the results for yourself, with ranges. Doctors don't have a clue - or have their ability to think surgically removed at med school. All need to be well in range, not just bottom.
Again thank you for your help. I hear you.. once i get some money towards the end of this month I'll do the next set of tests.
Regarding the results from Genova should i tell my GP about them? I do not know whether to go the "do it yourself supplement route" or get a GP prescription route which is likely to be hydrocortisone i guess? I almost feel from some stuff ive read online that my doctor may frown with the results being done by saliva.
Having read somewhat about hydrocortisone some say it seemed to make them feel worse when actually taking it.. but the Nutri Adrenal Extra route seems likely since all the reviews online have seemingly been good of this product..
I wonder if i can find someone on here who is on these supplements or in the same situation myself?
I'd like to be able to tell you that your GP would accept the results and prescribe HC, but he won't and he can't. (this is what happened to a GP in Hartlepool who was prescribing HC thejournal.co.uk/news/healt... )
I take both NAX and HC - although I'm in the process of reducing the NAX. I find the HC more effective and easier to control. My GP knows I take it, says that "nothing you are taking gives me cause for concern", but refuses to engage beyond that.
Thanks for letting me know, i had a feeling you would say that.. i didn't want to go into my GPs next Monday and come out feeling silly so i wanted to double check.
I might try the HC and NAX just like you. Definitely the NAX. I will start low and go slow and see how my body reacts to it. Where did you purchase HC and are there any specific brand/s you suggest? Have either helped in your own situation?
To me it looks like our health sector is not liking the fact that some of our doctors are smart, independent or more ahead in their research and butting in. So sad and so unreal.
I am going to do a bit of reading around the forums to see how others are doing with the supplementing.
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Cheers
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