Help and Advice Please?

I'm a Newbie (I'm in the UK), and just got back my results for Hypothyroidism:

TSH 2.15

FT4 12.6

FT3 4.1

My mother had clear results, until she nearly died before being diagnosed.

Are my results "normal"? I've had M.E./Fibro since August 1988. I went through the '"Signs and Symptoms" of Hypothyroidism and could answer positively to almost all of the questions'.

The reasons for asking for the Hypothyroidism test in the first place was because of the sudden (and I mean very sudden) gain of over a stone in weight ~ which is impossible because of the way I eat. I've had ever increasing hair loss and brittle breaking hair (of what's left), and developed a 'smell' that reminded me so much of my mother when she was sick, that I thought I'd as for the test.

Of course, the "syndrome" of M.E./Fibro and Hypothyroidism (often called Chronic Fatigue these days) have countless similarities regarding symptoms, with Hypothyroidism.

My mother was diagnosed with Hypo at age 17 ~ and when WW2 was underway she stopped receiving medication and went on being untreated until approx 1965 when she was dying from neglect of her doctors who considered her an 'overanxious little woman' (you almost had to be around in the 1960's to understand that derogatory term!).

Do I want to have Hypothyroidism? No. But at least it's treatable, whereas M.E./Fibro isn't, and my quality of life is very poor indeed.

Any advice gratefully received, with thanks, Barbara

33 Replies

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  • LadyBarb Reference ranges (numbers in brackets after results eg TSH: 0.78 [0.2-4.2] ) are needed to interpret test results, particularly FT4 and FT3, as ranges vary from lab to lab. TSH at 2.15 could indicate that your thyroid is starting to struggle but because it's well within any range we see on here it won't give a diagnosis of primary hypothyroidism.

  • Thanks, SeasideSusie ~ I'll get the Reference ranges on Monday and also book a double appointment with my Doc soonest, to discuss all the blood test results (I'd 10 (ten) vials or blood taken), but the Receptionist gave me the Thyroid results as my Doc's off today, and regarding other tests (whatever they were) ~ the overall results were categorised at 'no further action needed', which raised my Low Blood Pressure considerably.

    I feel like hell, look like hell, and am as angry as hell, all the time now, and I don't 'normally' do Angry! And, I don't know why, apart from the "syndrome" of M.E./Fibro ~ it's apparently considered there's no problem with my Thyroid!

    I'm grateful for you coming back to me, thanks so very much, and I'll come back with the Ranges and more information next week.

    My Doc knows that my mother had 'clear' Thyroid tests right up to before she was on the verge of dying, and if it hadn't been for a Locum coming in to do a 'home call' as my mother was so ill, she probably would have died. The Locum knew straight away what her problem was (and, she'd no goitre to show 'x' marks the spot!), and she was immediately taken into Hospital, where she remained for nearly 3 months, with a very definite Hypothyroidism problem ~ and was put on Thyroxine for life, and had a full blown, let's include everything Thyroid test each year after that. (Blimey, I think I'll change my board name to Mrs. Angry the way I'm ranting on!) :(

  • Ask for a print out of all the tests done and post them in a new thread. I dare say there'll be some clues there :)

  • Will do, :) B x

  • But other things to consider and test for are Thyroid antibodies. there are two sorts - TPO Ab and TG Ab - BOTH need checking for autoimmune thyroid - called Hashimotos

    Also check levels of vitamin D, B12, folate & ferritin. All these need to be at good levels in order to use your thyroid hormones - if one or more are low symptoms can be very similar to hypo

    If GP won't do these you can get done privately - see Thyroid Uk - private tests - Medichecks or Blue horizon do a full thyroid & vitamin test - £99 - DIY finger prick or optional extra to get blood drawn at local to you private clinic. They do money off offers quite regularly too

    Also look at poor gut function and/or gut infections e.g. Candida can cause terrible fatigue, as can being coeliac or gluten intolerance (no current test for intolerance- you don't have to have obvious symptoms)

    Lots of us with Hashimotos are gluten intolerant.

    See Dr Sara Myhill website on CF

  • Hi SlowDragon (wonderful name! says so much!) ~

    Although I've a good relationship with my Doc, I doubt that the "Practice" will permit further tests, so I most definitely will be pursuing other avenues to try to get to the bottom of 'why' I feel so ill on top of the usual M.E./Fibro symptoms. I will follow your advice to the letter!

    I have horrific 'gut function' ~ and have had infections of Candida (can't recall the medical term at the moment), and came to the conclusion also that I was gluten intolerant and am now 'gluten free' (doesn't feel as though there's much of a difference though), and as I've so many "intolerance" to so many things, and am a real pain for Doctors to prescribe for, due to "intolerances".

    I've IBS, Diverticulitis, Leaky Gut, you name it. (There's a very long story behind why I have these problems, but the short version is too many Ops finally ending with a full Hysterectomy at age 38, and I'm virtually super-glued internally with Adhesions.)

    I did have an ultra-sound oon my abdomen, which I also need to get results for, but the Doctor who did it said "It's just intestines ~ do you have IBS?" (I nearly fell off the examination couch laughing, and the Nurse was in fits of laughter too!).

    I was diagnosed as being VitD deficient about 4 years ago and had a starter course of three separate Vit D injections, (found out I'm allergic to the oily 'carrier' of the injections, with an immediate headache "washing" over my skull, the weirdest feeling!) and I now get an Annual VitD injection and just deal with the dreaded headache. No doubt my Doc will say my Vit.D level is 'fine'.

    I'll follow up on the others: Ferritin, B12 and Folate, and ask if I've been tested for them, and if not will ask to be tested, or undertake to get them done myself.

    I appreciate your advice, thanks so much, and please do let me know how you manage to get your own levels up to optimum, and what your next course of action is, when you've decided on it?

    There's so much to consider, isn't there? It's a bit mind-bending when energy is very low. All the best, Barbara

  • If you read my profile .....over 20 years of only treating Thyroid. (Hashimotos- Extremely high antibodies on original diagnosis)

    Turns out I have leaky gut but absolutely no gut symptoms

    Joining here and reading / learning gut connection, I went gluten free last year. TPO Antibodies have halved in almost a year

    I also have issues with taking vitamin D (made my legs so painful I couldn't walk, or even barely stand)

    Magnesium & using a vitamin D lamp have been fantastic. So much so I have actually (very cautiously) lowered my thyroxine a tiny amount.

    Prior to vitamin D (supplements or lamp) I had loads hypo symptoms, even on good level of Levo, high T4 & lowish TSH.

    Realised (light bulb moment) that improving my vit D, I might need LESS Levo. (Not more)

    Apparently You can have Hashimotos without having high antibodies - ask for scan of your thyroid. Also central hypothyroidism is much more common than is diagnosed.

    Have you seen an endo who specialises in Thyroid?

    Had your cortisol levels tested? Saliva test is best

  • Ah! Didn't realise there were profiles. OMG, you've been through the mill but are very determined to do all you can to help yourself, which is totally admirable. :) I've obviously a lot to learn:

    Here's a copy/paste of what I wrote to my Doc, as (if I'm anything like my late mother!) I'd a sneaky suspicion that the test would come back 'clear', and I'm not going to willingly go down the route my mother was forced to take!

    " The point I'm getting to is if the first Thyroid "blood" test is clear, may I have full spectrum Thyroid tests, beyond the Thyroid Stimulating Hormone (TSH) blood test with instructions to the Lab that "Thyroid function test including FT3 & FT4, regardless of the TSH reading." be added. Additional tests being ... for example ... comprehensive T4, T3, Cortisol, Vitamin B12, Vit D (our old favourite!), iron, ferritin and folate and **Thyroid Peroxidase (TPO) and Thyroglobulin (TgAb), and the faulty 'gene' tests.

    Please be assured that any tests you are unable to request for me, I would be willing to personally pay for, if I may have your approval, and / or with a referral to a (Private) Specialist Consultant in Thyroid problems if the practise is willing to accept the results (if any are indeed positive) and to prescribe for me and/or agree to me sourcing whatever very expensive medications are cheaper from abroad..?"

    I just feel that there as tooooo many similarities between the M.E./Fibro and Hashimoto's for me to ignore. My frame can't tolerate the massive and sudden jump in weight, it's crippling me to the extent that I gave in and used a wheelchair for the first time in my life. For me a wheelchair is the beginning of the end, and I'm refusing to use it in the house ~ thankfully, I've always been a bit stubborn ;) I'll use the wheelchair at the hospital, as it's so badly planned out that walking is totally out of the question.

    Re the 'Gluten Free', I tried it years ago but would have been happier eating thick cardboard ~ but many aspects of the off the shelf goods are very good now, However ... I am intent on stopping eating anything from any 'grain'. First massive allergy was wheat, and over the years every other grain / flour has fallen in behind that. I can't even do potato flour! I'm sad to be losing gluten free/organic fine milled oatcakes ~ but like this weird weight increase ("unknown" cause), they have to go.

    My body's weird ~ anytime I eat something that's become a.n.other unknown problem food, my teeth feel as though they've grown a 'fur coat' (ghastly) and two tiny lumps form at the back of my upper jaw, near where my (so-called!) wisdom teeth were ~ and I've tested and re-tested that 'warning' from my body, and it's always right. (sigh).

    I'm not a chocolate or sweet person ~ although in sheer and utter rebellion and disgust, I was tempted to demolish an Easter Egg, because I'd put on so much weight, so suddenly, that I thought (wrong of me, I know!) "what the hell?". However, the Easter Egg remained intact. It'd just have made me even more sick anyway... LOL.

    I eat so 'well'; my body's even led me towards what I've seen termed "thyroid friendly foods" and steered me away from foods which are contra-indicated.

    Another "oh, my body's so weird" thing, is I can't tolerate a Vitamin B complex, it makes me very ill, causes "gastric reflux / projectile vomiting" and such body pain, no matter how pure/expensive/free of everything possible. But, I need to find out if I'm short of B12, that's for sure ... :( ... or at least source more foods relating to B12. That'll be interesting ;)

    Ah! "Central Hypothyroidism" ~ I mentioned in the book that I wrote to my Doctor, that as M.E./Fibro was considered to have causes linked to the Hypothalamus and Pituitary glands, that surely must be worth looking into further ... and re the endocrine system, I've had no natural female hormones since 1988, tried HRT for 5 years and then tried being without it, and felt slightly better not taking it, so I moved into the land of the 'tropical moments'. Cat's Claw helped with that.

    The first thing that I need to do is educate myself ~ I need to be able to understand 'why' my body's become even more screwed up and be able to get my Doc to listen, understand, and help when I see her.

    The second thing I need to do is get my results directly from my Doc, although I'll get more info on the Thyroid results tomorrow, if I haven't turned into a 'bat' yet again, being awake all night and sleeping during the day.

    Chronic Insomnia is really nasty; I was awake for approx 30 hours several days back, then slept for 18 hours straight in a sort of 'catch-up" sleep. That's so unnatural it must screw up the body balance badly. To have that followed by our 1 day of Summer (!) and my eyes were so light sensitive that I'd to close the internal shutters of the bedroom ~ that's no 'life enhancing' experience.

    Would you please tell me more about your VitD Lamp? I'd rather have that than a headache inducing injection.

    Oh heck! I'm writing another book here. Thanks again for getting back to me. :) Barbara x

  • Vitamin D lamp made by Androv Ltd - either direct or via Amazon - wasn't cheap at £299 - but so far seems brilliant

    amazon.co.uk/d/Health-Perso...

    But they don't seem to have any listed at moment on any website

    This one is more expensive

    treatpsoriasistl01uvblamps....

  • Oh ye gods! I'd buy it in a minute if I had psoriasis ~ which I don't ~ but I want to get CT Scans on various parts of my body, and I believe I've just discovered "by accident" why I've really bad pain under my right shoulder (which is horrific at the moment) and if I'm going to get quick treatment it looks like I'm heading towards going 'private' once again. :( Not having a 'good day' as the saying goes.

    Thanks for the info though. I'll keep it to one side in my many notes, and see if the one you've got comes in with Amazon at a future point. B x

  • Gosh LadyBarb - we have the exactly the same symptoms and almost exactly the same test results (My THS is 2.75 though) and the M.E illness.!!!. I have been suffering for years with my health and it was concluded that my symptoms were due to M.E . I am So sorry to hear about your mother being neglected. I'm afraid to say a doctor wont treat you for Hypothyroidism unless your TSH is well over 5....

    Helpful people on here recently advised me that my test results were borderline and that my thyroid was struggling and advised me to have the following blood tests (as being deficient or very low in these all can contribute to your thyroid under performing:

    Ferritin

    B12

    Vitamin D

    Folate

    As my results were all borderline, I am going to try and get them all up to optimal levels and then think of the next course of action. Hope this helps a bit, there are some very knowledgable people on here that will advise you more.

  • Hello Annealise! Fellow M.E. sufferer. When I first got ill, I got a very quick diagnosis of M.E./Fibro ~ BUT, of course, it didn't do any harm that my Consultant's wife had M.E., and he was very interested in the illness because of that, and very understanding ~ but I thought he was 'nuts' when he told me I had to stop work immediately for 2 years, and if I didn't recover in that time, my chances of 'recovery' wouldn't be very good. Unfortunately, he was right!

    He was very interested in my mother's history of long-undiagnosed/ clear test results of Hypothyroidism, and even before the blood tests were sent off, asked if I'd like to try a 'trial' of Thyroxine, which I did, but the dosage (can't recall exactly what it was, but it was the same as my (late) mother had been on for years!) sent me off to some other planet, and I had to stop the trial as I felt even more ill. My Thyroid blood test came back 'clear' however, that was approx 29 years ago.

    (I guess you can tell how I'm feeling today, as I was getting your Post and SlowDragon's post a bit confused, between scrolling up and down. Concentration of a debilitated gnat..! )

    Please forgive me? (I'm so new to this awesome forum.)

    As you suggested, I'll follow up with my Doc on what I've been tested for ~ and particularly all that you mentioned ~ and follow your lead, and ask you please to let me know how you get on ~ and if there's any difference in how you're feeling when you're at your optimum level? Plus, of course, what you decide happens 'next', as and when you feel your way forward to the next step?

    I'm feeling very 'emotionally conflicted' at this moment in time.

    The M.E./Fibro is still classified as a 'syndrome', where the Medical Profession don't even know what to look for, therefore have no ability to do relevant blood tests for a definitive "diagnosis".

    And, it's become very clear to me that people with Thyroid problems, although having an actual blood test for diagnosis, are treated absolutely shamefully by the Medical Profession who can't get their act together, and come to an agreement as to what the parameters actually are, with the incredible variance of these, basically from one county to another ~ and from one country to another.

    What's so sadly obvious is none of this has improved in the least since since approx 1965 when my mother's "clear" blood tests proved to be very far from clear and so nearly killed her..!!!

    I've regularly heard of "orphan illnesses" but I'd no idea that Thyroid was one of them. :(

    Thanks to all who contribute here and who have such extensive knowledge and who share it freely.

  • I can imagine how you are feeling right now. My M.E consultant did a blood test to confirm my illness or I wouldn't have accepted the diagnosis. Your consultant was correct in giving you that advice. I went back to work too soon and was never the same again.

    Yes it's scandalous we have all the symptoms of being hypothyroid and have to be judged by the 'one size fits all' test range. I wish we could all petition against the uk testing range.

  • What blood test did your ME consultant do to confirm your illness?

  • Hello helvella ~ it's 29 years ago, but I know it was a very wide and all encompassing blood screen in 1988. I don't even know what it is now.

    I'll copy/paste what I replied to Annealise re it, if that's okay? I'm getting very tired.

    "I'd a whole panel of blood tests ~ he insisted on an armful of blood! lol.

    I can't recall what all the tests were ~ most were clear ~ but I do recall the Epstein-Barr being positive (that's just par for the course ~ but 'the kissing disease in my late 30's (38 to be precise?!) and also Flu "A" Virus was very high.

    I hadn't had the flu since I was 16..!!! (1966) I'd taken a flu injection, left the Doc's and crumpled in a heap in the street. I'd the worst flu I ever had in my short (at that time) life ~ then I never caught flu again! Colds, yes. Flu, no. But some 22 years later I'd FluA virus showing up with a high titre in a blood screen..?

    I've not ever caught flu again. Needless to say, I feel as though I've had the flu each day for the last 29 years because of the pain. (Thank goodness I don't have the 'mucus'! ;) ) There was something else that's not immediately coming to mind, not that it's important now.

    To add in a touch of irony to the whole mess of the illness, I'd been training to be a psychotherapist, with a very highly thought of lady psychotherapist in Glasgow ~ who had insisted that if I wanted to train under her, have her as my 'mentor', that I undergo my own deep analysis! ;) She was a clever cookie! :)

    I was doing well, then the M.E. hit in (and she knew my Consultant ~ small world!) ~ and I delved ever deeper into my own analysis, as opposed to 'training', as I actually wanted the M.E. (it!) to be a "psychosomatic" illness.

    That would have given me the 'power' to effect my own cure. But, what did happen, was that the deeper I delved into analysis, it became blatantly clear that "it" was, and is, an organic illness, and the only thing I could do was learn to live with "it". Adapt and change!

    My 'mentor' became my very close and highly valued friend :)

    What sealed the diagnosis for you Annealise? I'm so sorry that you felt you had to go back to work, and that it caused you further distress ~ "it" is completely life-changing, that's for sure ...

    And now, we face this challenge with Hypothyroidism 'appearing' to be a fit with our symptoms but we're apparently not considered to be Hypo.

    "Slow Dragon" mentioned "Central Thyroidism" which I'd not heard of, but have had a very brief look at, and it involves the Pituitary Gland, Hypothalamus etc., which are so often major problems with M.E...! I'm going to look much further into this; do you know about it at all ? ( uptodate.com/contents/centr... ). Seems we're leading lives where self-education is the key to survival."

    Hope that answers your question? If not, please don't be shy in coming back to me? Barbara :)

  • I am quite certain that ME is an organic disease/disorder.

    Was surprised when you said about blood test because so many times we see ME dismissed because there is no blood test. Your full response explains. Thanks.

    If you want to draw someone's attention to a post or response, you can type @ l a d y b a r b (without spaces). You should get a short list iof names that match - click on the one you want. That then appears like this: LadyBarb and the person receives an alert (if they have alerts switched on)! :-)

    I edited your responses to put a space before and after the links - that allows the HU software to convert them from simple back text to a clickable link.

  • Hi again Annealise ~ and thanks for understanding :)

    I'd a whole panel of blood tests ~ he insisted on an armful of blood! lol.

    I can't recall what all the tests were ~ most were clear ~ but I do recall the Epstein-Barr being positive (that's just par for the course ~ but 'the kissing disease in my late 30's (38 to be precise?!) and also Flu "A" Virus was very high.

    I hadn't had the flu since I was 16..!!! (1966) I'd taken a flu injection, left the Doc's and crumpled in a heap in the street. I'd the worst flu I ever had in my short (at that time) life ~ then I never caught flu again! Colds, yes. Flu, no. But some 22 years later I'd FluA virus showing up with a high titre in a blood screen..?

    I've not ever caught flu again. Needless to say, I feel as though I've had the flu each day for the last 29 years because of the pain. (Thank goodness I don't have the 'mucus'! ;) ) There was something else that's not immediately coming to mind, not that it's important now.

    To add in a touch of irony to the whole mess of the illness, I'd been training to be a psychotherapist, with a very highly thought of lady psychotherapist in Glasgow ~ who had insisted that if I wanted to train under her, have her as my 'mentor', that I undergo my own deep analysis! ;) She was a clever cookie! :)

    I was doing well, then the M.E. hit in (and she knew my Consultant ~ small world!) ~ and I delved ever deeper into my own analysis, as opposed to 'training', as I actually wanted the M.E. (it!) to be a "psychosomatic" illness.

    That would have given me the 'power' to effect my own cure. But, what did happen, was that the deeper I delved into analysis, it became blatantly clear that "it" was, and is, an organic illness, and the only thing I could do was learn to live with "it". Adapt and change!

    My 'mentor' became my very close and highly valued friend :)

    What sealed the diagnosis for you Annealise? I'm so sorry that you felt you had to go back to work, and that it caused you further distress ~ "it" is completely life-changing, that's for sure ...

    And now, we face this challenge with Hypothyroidism 'appearing' to be a fit with our symptoms but we're apparently not considered to be Hypo.

    "Slow Dragon" mentioned "Central Thyroidism" which I'd not heard of, but have had a very brief look at, and it involves the Pituitary Gland, Hypothalamus etc., which are so often major problems with M.E...! I'm going to look much further into this; do you know about it at all ? ( uptodate.com/contents/centr... ). Seems we're leading lives where self-education is the key to survival.

    I believe that there have been many arguments over the parameters that Hypo/Hyper is judged on. As far as I can gather, there's a great deal of ignorance within the medical profession about Thyroid problems in general, and some rather strangely held belief systems in particular :(

    Anyone an 'expert' regarding how to start petitions? I'm, unfortunately, a technophobe. I'd one of the first 'portable' computers in Scotland in the mid-80's and now I can't even operate a smartphone! lol.

    I wonder how easy it would be to start things rolling with twitter and tweets and re-tweets or whatever? (says the "I can't even operate a smartphone' person! LOL)

    Isn't there a Parliament website where it's possible to have a question raised and discussed in Parliament about *anything*, if a certain number of people 'sign' the petition online? Worth a thought? B x

  • Hi Barbara so what does GP have to say about rapid weight gain?

    Have you told them? As already mentioned you need the Thyroid antibody blood tests.

    Why not ask GP for them? Mine were only done by hospital Consultants but you could at least ask, unless you are currently under any consultants?

    You could also ask GP to send you for an Ultrasound scan of your Thyroid.

    If they ask why just say as you have symptoms of Hashimoto's you would like to eliminate or confirm it.

    Is your temperature ever slightly low?

    Have you any throat or swallowing problems?

    Did GP tell you these blood tests are normal?

    At a glance they look borderline. Sadly if they're within 'normal range' they don't seem to bother to look at the numbers.

    However, as already mentioned you need to include ranges.

    X

  • Mary, on what basis could you ask a GP for an ultrascan on your Thyroid if your thyroid tests are in the ' normal range'?

  • I made an appointment with the most agreeable GP of the practice at the time (he's retired since). When I asked him to send me for a scan he asked why. So I told him I'd been in touch with a Thyroid helpline and advised to ask for it. And I told him some of my symptoms.

    The lovely woman I phoned had listened to me tell her ALL my symptoms and said you've got Hashimoto's!

    I didn't pluck up the courage straightaway, but got around to it eventually after I'd been very ill.

    X

  • Hi Mary-intussuception, and thanks for replying and in particular for all the questions!

    Rapid Weight Gain: I'd originally gone to the Doc for a catch-up prior to having an ultra-sound on my intestines and my bloods done.

    I told her about the totally unbelievable weight gain (from 7st 10lbs to 8st 12 lbs in approx 6 weeks??? It's not possible. (I've one of the healthiest eating patterns possible, and am now Gluten Free). I told the Doc about my mother's 'history' and without a second thought, she said "we'd best do a blood test for Thyroid" and within minutes I was in with the Bloods Nurse. The Doc ordered the TSH, the FT3 and FT4 ~ all as above, "clear" (her note on my records was "no further action needed" which my friendly Receptionist read out to me, on my request) ~ and I'd other bloods to be checked, which I will arrange to get results of this week ~ but, I'd take an educated guess that they'll all be termed "normal", "clear" and I'll once again be the "healthiest little sick person" ever!

    My head's a mess, but for some reasons which are very valid (e.g. days people deliver to me), I thought this was Friday, but they'd changed the day! Days mean little to me now after 29 years of M.E./Fibro and I'm suffering from horrific sleep deprivation through Chronic Insomnia.

    I'll get onto blood test results tomorrow (Tuesday, 11th April) and arrange seeing my Doc as soon as I can.

    I felt unsettled when I returned from the Medical Practice, and decided that I'd write a letter to my Doc, trying to give her as much family medical history as possible, as it's not practical to do that in a 10 minute appointment (although I've now to ask for a double appointment when I arrange to see her).

    I'm certainly going to request the Antibody blood test, and the others mentioned.

    I can but ask ~ and if not forthcoming, then I'll pay to get tests done myself. I mentioned things like that in the letter I sent her.

    I also asked if I may have an ultra-sound on my Thyroid, as although there's no sign of any goitre, I do have the 'lump in the throat' problem, and have constant throat infections.

    Bearing in mind my mother was Hypothyroid long before I was born, I've had some very 'strange' anomalies in my life. If my temperature is 'normal', I'm actually running a fever. I've always had Low Blood Pressure. I've never had any of the 'normal' childhood illnesses (apart from Mumps and a sore red throat as a kid, as a 'constant'. I'd cold as flu, as everyone did at school.

    But, I didn't even get Measles until I was 28, even though when my 3 male cousins got every childhood illness going and I was thrown into the 'mix' to get whatever they had ~ I never caught anything from them. Ever. (?)

    I'm trying my best to get my Doc to look at not just the Thyroid Test blood results, but also all the other 'symptoms' I have ~ and to try to get her to see more than just 'numbers'.

    Symptoms which I have, relating to Hypothyroidism "Signs and Symptoms" (many of which cross-match with M.E./Fibro symptoms. This is some "List"..!

    Excessive tiredness; weight gain; high cholesterol; cold extremities; slow movements; slow speech; pins and needles (especially bending head forward and getting pins and needless come from my toes up to my knees in waves); breathlessness ~ I sign a great deal, made considerably worse by sudden weight increase); palpitations since sudden weight increase; Chronic Insomnia; repeated urinary tract infections; upper respiratory tract infections; poor response to treatments; have had candida (not at present); heavy eyelids; hoarse voice (frequently!); muscle cramps and weakness; joint stiffness; cold intolerance (now I don't know when I'm getting cold and the results are horrific); Diminished sweating ~ has been life long, I rarely ever had sweated even during prolonged exercise); Vertigo; balance problems, dizziness; Puffiness of eyes, face and hands, oaacionally ankles, since sudden weight increase; sore throats, swollen tongue (odd one since weight increase; scalloped tongue; choking fits; dry mouth, halitosis, sensation of lump in throat; post-nasal drip (which is clearing up with Gluten-Free); Numbness in legs, toes, arms, fingers, back; Hair: body hair loss, head hair loss, brittle hair, outer eyebrow hair loss; Nails: brittleness, flaking, hard nails (had previously been soft nails until a year or two ago); Skin: Dry, flaky, course ~ everything it never was before!); Pain: Migraines (which are increasing in frequency); pressure headaches; back pain; wrist pain; carpal tunnel syndrome; foot pain. Digestive problems: Alcohol intolerance (for in excess of 30 years), Constipation, Haemorrhoids (at times, and the occasional fissure); IBS; Abdominal distension/flatulence (intolerance of 'hidden' additives, although I don't eat processed foods). Blood pressure and pulse: Low Blood Pressure; slow/weak pulse (noticed my pulse is slower and weaker than it was ~ was formerly much higher and very strong). Pre Hysterectomy 1988 (age 38) had had Heavy and badly clotting menstrual bloods/ couldn't have children/ massive PMT. Visual disturbances ~ only use off the shelf glasses for reading, however ~ can experience poor focussing; double vision; dry eyes; gritty eyes; blurred vision; and very light sensitive. Hearing Problems: Tinnitus for 29 years but hearing is extremely sensitive. Mental and Emotional: Panic attack (very rare and I can deal with it); mental sluggishness, poor concentration; loss of drive; nightmares. Mood swings which I didn't experience much of before weight gain (?); Depression, difficult not to experience a degree of depression from 29 years of chronic illness; personality changes ~ over-tired and over-stretched from having to 'adapt and change' for almost 3 decades and now have inexplicable further 'symptoms' over and above M.E./Fibro.

    That about sums it up! LOL. Oh! I did have 'restless legs syndrome' but 2 x 5 mg Nitrazepam, while they don't make me sleep, they have resolved that problem for 17 years!

    Interesting/Amusing 'fact'? I'm very sensitive to meds and sometimes 'less is more'. I have the 2 x 5mg Nitrazepam and if necessary I can take 1 or 2, 2mg Diazepam (which I rarely do) ~ however, I've seen it with my own eyes, as soon as the Rx for these two meds are ordered, the Doc's computer screen flashes up in huge black letters: "Drug Addict". I've been on these for years ~ never requested an increase of the dose, in fact I frequently cancel the Diazepam or reduce the dose to 28 x 2mg and they can last 4 to 6 months ~ and at nearly 67, I'm a "Drug Addict" ??? At my age, I should care? ROFL.

    So much for "medical parameters"

    "Medical parameters" ~ I've gained 1st 2lbs of weight which I can't remove and the additional weight is putting a terrible strain on my body ~ but my body weight for my height, my BMI, is "Normal".,? If it wasn't so comical, it'd truly make you (me) weep..!

    Will be back when I have some news. Barbara x

  • Hi Barbara, just seen your post. A few points.

    Have you mentioned double vision to Dr yet? It's vital that you do. Do you remember getting any new head pain in temple area with the double vision or jaw pain when eating or stiff neck?

    You mention off the shelf specs. Does that mean you haven't seen optician? Please get urgent eye test. And/or see GP.

    Please ask for urgent CRP Blood test (C-reactive protein) and ESR (they don't do that one at our hospital though But CRP will do.)

    You can go to A&E with the double vision /visual disturbances or make urgent appointment with GP or tell optician and have urgent check. Any of these 3 can give you urgent referal to Eye clinic if necessary.

    About HYPO symptoms & weight gain have you noticed if they come on after a cold or other infection?

    Who sent you for scan of intestines? Does this mean you are still under a hospital consultant? I wonder if they tested Thyroid Antibodies?

    It's vital you at least get antibodies tested. Hope GP agrees to send you for the Ultrasound scan of your Thyroid.

    You could also be referred to ENT with throat problems. And Colorectal people with long standing IBS / constipation which is not responding to/ improving with Healthy eating/high fibre diet.

    FIRST THINGS FIRST - PLEASE get your eyes checked urgently. You must get diagnosis and eliminate any treatable condition that could put your sight at risk.

    ps have you been started on any steroids recently?

    X Mary

    🐥

  • Hi Mary :)

    In the 'book' (my letter) I sent to my Doc, I outlined all the vision related problems. Of course, it's not at all uncommon to have visual disturbances with eyesight with M.E.. Much as I hate to admit it, I haven't seen an Optician for probably more than 6 years. No need for glasses last time I saw the Optician ~ but I'm not getting any younger ~ 67 in 10 days time (whimper ~ where did the years go? (No, don't answer that, lol, I know only too well...) ...

    I need to be 'well enough' to go to the Doctors, or any other medical appointment for that matter ~ and attendance frequently ends up in my body being present at the appointment, but my brain going AWOL into brain fog from the exertion. I'm mainly house-bound (apart from medical appointments, as and when I can keep them) and because of pain I'm frequently bed-bound in the sense that that's about the only place I can get some pain relief.

    I will make every effort to see an Optician, (I'm more interested in what they see 'behind' the eye!) or find one who can come out to the house, but my sleeping pattern is totally obscene (just last week I was awake for 30 hours straight. By that time I was quite literally bouncing off of the walls).

    When I first got ill, I went to the Opticians and got prescription glasses for reading. My eyesight varies from day to day. The glasses I got from the Optician made me feel very, very nauseated when using them for reading. I had the Rx double checked, etc and all was allegedly okay. 13 years later, I could use the glasses to read without wanting to vomit. I found the 'off the shelf' glasses much better and I'm nowhere near needing anything like the strongest ones to read. I've a selection of the various 'strengths' of reading glasses, and use the ones that serve me best on any given day.

    Joy of joys (not!) when I woke up this evening at 10pm, I discovered I must have been rubbing my eyes during my sleep. I've been getting small crystals forming at the corner of my eyes (most common reason appears to be that as our eyes are constantly being washed by tears, that the tears can evaporate and leave behind crystalline salt deposits which are rather hard) ~ but it seems that one had gotten under the eyelid and caused irritation. I'm on antibiotics (again) but if I develop any form of eye infection, I'll be straight onto any of the Docs in the practice and get a prescription collected to deal with it. The pain/ blurring is easing off now, which is why I'm back on the laptop. (The old 'cure' of using a used, milk-free and of course cold, tea-bag held against the eye for 10/15 minutes seems to have worked to a large degree!).

    I think a CRP blood test would be inconclusive, as it confirms areas of inflammation, even an upper respiratory infection, and there's always inflammation in my intestines, etc., so I doubt the Doc would hold much stock in any results and I've had a URI turn into early Pleurisy once again (hence the antibiotics).

    No, I don't have jaw pain when eating ~ and the pain in my neck (not stiff neck) comes from thinned and cracked discs in my neck.

    I have had trigeminal (facial) neuralgia for a very long time, and find that Lyrica (pregabalin) is the answer, for me, for that. I certainly know when I miss a dose ~ it's a very painful thing to have.

    Re Hypo symptoms/ weight gain, I have so many infections, which come from out of nowhere (my immune system is somewhat knackered, it appears), that it seemed I was just suffering rather a lot from my stomach bloating (nothing new), and being a bit weight conscious, because the lighter I am, the less my body has to struggle, I realised that I had what I term a "hang-over" of something with didn't appear to be like 'bloating' building up above and then over where my horizontal hysterectomy scar is and my ribs were starting to disappear from sight. It was truly weird.

    My weight scales were broken, and I kept forgetting to order new ones, and by the time I did, I knew I was over 8 stone, and nearly passed out when I weighed myself and was 8st12lbs..! (I don't tend to wear 'tight' things so I didn't realise I'd gone (what to meI is 'massive'.

    I'd been eating well, and have an eating plan my Doc wishes at least half of her patients would follow. There was no change in my 'diet', I wasn't eating more than usual, I watch 'volume' because I'm so sedentary and don't have the energy to burn off mega calories.

    I don't overly indulge in anything. It's not an eating plan with processed foods. Many months back I'd started having a problem eating porridge, changed over to gluten-free porridge (one that doesn't taste like wallpaper paste!), and found I was still getting a slight reaction from that, so I dropped it. I can't really tolerate any grains/flours any more.

    Scan for intestines? Long story which I'll try to make short. I occasionally have an 'eruption' of what's basically poison, from my Diverticulitis. I'd also had a bad bout of IBS ~ moving from constipation and hard little bits of faecal matter, right through the range to chronic Diarrhea. Been there, done that, written the book, nothing new. What was new, was a day or so later, the Diverticulitis threw out an explosion of blood, which in one single motion, covered the internal walls of the W.C.. Not good. My Doc was on holiday, so I saw the head of the practice. He suggested that I have a 'colonoscopy'. I said I'd consider it and when I got the info through, every single 'cleansing enema drink' had Aspartame in it and was 'flavoured', things which I'm violently allergic to ~ and which make my intestines ache and blow up like a balloon.

    I don't know if you've seen the arrangement of our 'internal plumbing'? It's a very bad design, when it comes to having a camera shoved up your anal passage..!

    So I spoke with the Doc, said I've more than enough intestinal problems, without taking an enema with Aspartame causing me intense swelling and pain ... and then having a camera threaded through my intestines, which at best are super-glued together with adhesions. Between the idea of that, and also having to fast (which causes me horrific headaches), and 'coincidentally', to top things off, everyone I'd mentioned to that I was considering the investigation, and who had had had a "colonoscopy", had had their bowels perforated..!!! :( One person I know, who's no 'wimp' in any sense of the word, had opted for the CT scan/ gas and probe procedure. She was in so much pain she was screaming her head off and crying.

    I've more than enough problems without 'volunteering' for more.

    We settled on an ultra-sound of my intestines, which could be done in the Community Hospital, where the medical practice I'm with works out of. Even though the ultra-sound is totally non invasive, my intestines were sore, and it wasn't a painless procedure, but it was a short one!

    The Doc who was doing it said "it's just intestines" ~ as in nothing more nasty ~ and asked me if I had IBS. That caused a bit of a laugh to say the least.

    If my Doc had thought that sending me for an ENT Consult, to stop the problem of constant throat infections, she'd have done it ~ but even an ENT Consultant can't stop viral infections unfortunately. But, I do appreciate your concern! :)

    Over the decades, I've been prodded, poked, investigated, donated body weights of blood, and feel I've done more than my part for medical science, unless they want my body after I'm dead. ;) At that point they're welcome to it.

    Because I still smoke (yes, I know I'm a bad person!), my Doc put me through a series of X-rays. She was astounded, not only that my lungs are very clear, but also with the depths of my lung capacity when she insists on sounding me out with her stethoscope. Even the other Docs in the practice have checked my lungs out, and shaken their heads in puzzlement as to how an 'evil smoker' could have such good lungs. At least something's working right, but that doesn't mean that I can stop an infection going into my chest ~ but I know when to catch a touch of Pleurisy when it starts and stop it in its tracks.

    ESR, CRP and PV levels aren't going to tell my Doc anything that she doesn't already know. There's always 'something going on' in my body. The 'damage' that's been done to me, through too many Ops, particularly abdominal, will never now change ~ if my intestines suffer any further damage from the IBS, Diverticulitis (in particular) or Leaky gut, I may have no choice but to have one final Op ~ and I'm not even going to that place in my head!

    With the M.E., my body is on constant alert ~ it's just a 'confused' alert.

    Was looking at a link earlier on (can't recall where it was on the site) and it's the Canadian Concensus Document on M.E./CFS (and FM) ~ A Clinical Case Definition and Guidelines for Medical Practitioners", and it puts into medical jargon, all the things I've been saying to Doctors since 1988..! Then, in amongst the medical jargon was this little gem:

    "A.S. enzymes may lead to hypothyroidism while the thyroid hormone levels in the blood are normal.

    Acute onset patients usually exhibit more

    immune dysfunction. Immune activation symptoms, particularly in the acute onset stage, may sometimes occur in the absence of known viral exposure. Physical exercise and overload situations may trigger or exacerbate immune symptoms.

    · General malaise

    · Tender lymphadenopathy, particularly in

    the cervical, and axillary inguinal regions

    · Recurrent sore throat

    · Faucial injection and crimson crescents may be seen in the tonsil fossae

    · New sensitivities to food, medication

    and/or chemicals.."

    My Doc will be getting a printout of the "Canadian Consensus Document" ... with the above "highlighted". The above sums up precisely what I'm going through right at the moment!

    It says what I've already written to her ... but it's at least in Medical Terminology and is written by Doctors.

    If you get a chance to slowly work your way through the Document, it's well worth it (at least as far as I've managed to get at the moment. It'll take quite a few days, on and off, to slowly digest some of the less complicated medical info, but it's the best explanation of M.E./Fibromyalgia that I've ever seen.

    Seems some Doctors have been listening hard to patients, and have been taking on board all the information they've been given, even though it's been given in non-medical terms! :D

  • Hi

    Not sure if you're still having double vision?

    Generally speaking this is a Medical emergency

    Temporal Arteritis (Giant Cell Ateritis ) needs to be ruled out as it can cause loss of sight in one or both eyes.

    X

  • Good Morning! How are you doing today? You awake early, or just not managing to sleep? :)

    No the double vision comes and goes, it's at its worst when I've been awake too long, or heading towards the verge of sleep at times (?) at which point it makes me keep my eyes closed..!

    It's difficult to give a 'life story' of what comes and goes, and what's a total constant, so thanks for the Questions.

    My spine's in spasm and I'm at screaming point. I had an antidepressant which worked to ease off the muscle cramps and spasms, at least a little, but the brand was bought over by a bigger company, and they're using their own brand and I'm highly allergic to it and have tried the other brands with no success.

    I saw a recommendation online for a muscle relaxant so I'm going to phone the Doc for a trial of it. She's run out of ideas because of all the meds I can't tolerate. I'll ask for something for my eye too. It's not bothering me much at the moment, but I amn't taking any chances of that happening again. B x

  • I shall give you some links which might be of interest. They are from a doctor/scientist/researcher and he was also an Adviser to Thyroiduk.org.uk.

    web.archive.org/web/2010103...

    web.archive.org/web/2010103...

    web.archive.org/web/2010081...

    Dr Lowe is now deceased through an accident and he is a great loss to this community and others.

  • Many Thanks Shaws, I obviously have a lot of very interesting and informative reading to do. I'm so sorry to hear of Dr Lowe's passing ~ and that the community (and his family and friends) lost such a wonderful and much valued friend. :(

  • Ladybarb

    On the face of things your thyroid results are pretty good however what no one knows is what they were before you got ill and thats the big problem because you may well have had levels almost into overactive zone so now your really feeling a drop big time

    The other possibility is B12 deficiency /pernicous aneamia

    This masks with all the hypothyroid symotoms

  • Hi reallyfedup :)

    You're so right! And, the B12 check is a must.

    Before I got ill in 1988, I was a Sales Manager with a Commercial and Industrial Painting and Decorating Company ~ I was having a 200 year old 'roses round the door' country cottage completely renovated, and I was training to be a Psychotherapist! I drove approx 1,000 miles a week, and loved my life and the 'love of my life'. I'd energy in abundance and always had had a very strong work ethic.

    I'd had an emergency hysterectomy in April 1988 and got a hospital acquired infection, but it didn't set me back in recovery from the Op. I'd been on major anti-biotics for 'pelvic inflammation' before it was discovered I "had to" have the Op.

    I was fit enough to deal with these things. 2 weeks out of the hospital I drove north from Glasgow and island-hopped up the Western Isles (Hebrides) to Stornoway. I took things easy when I was there.

    In the summer I got a not so lovely dose of Norovirus/Winter Vomiting Disease (out of season), and a friend insisted the Doc be called in, and she said I looked as though I'd lost half a stone in an hour (she might just have been right! lol). I got over that, but not so quickly, then was fine. My system had been through a few challenges within approx 4 months, but it'd won through.

    By the Autumn, all was not well at all. Very far from well. I was a totally different person. I had to drive either west to my Glasgow Office, or east to my Edinburgh office, but one day I found I was driving to work ~ and going south. That frightened me. Coming home from Edinburgh one evening, I was sitting in the filter lane at traffic lights, on a major road, to turn left, and 'came to' bumping along a cobbled street. I was terrified. All I could do was turn the car around and see if the road led back to the traffic lights. Eventually it did and thankfully there had been no accident! (I didn't, and don't, drink alcohol, so there was nothing related to that.) My brain had just shut down again.

    I was 'tired all the time' ~ by the time I'd driven to work, all I wanted to do was go to sleep. I went to my Doc, who sent me to meet my Consultant, and I was signed off of work and was never able to return.

    I was fortunate that the Company I worked for liked me as much as I liked them, and they kept me on their private medical insurance for 2 1/2 years after I left. Gave me the company car for 3 months, so that I could get 'organised', and sell my dream home in the countryside, and go back to my home City of Glasgow, to live with my mother and be close to family and friends. The 'love of my life' was unfortunately not strong enough to deal with the terrible deterioration in my health ~ said he didn't know me any more, and we parted company.

    As well as unremitting pain, and a brain as thick as two short planks, I'd developed terrible gastric problems (turned out I'd a massive wheat allergy, diagnosed by the Homeopathic Hospital) ~ I didn't know who I was any more ~ and I could understand why my partner didn't know who I was.

    Gained some weight/ lost some weight, (nothing like the weight I am inexplicably at now!) changed my eating habits, got allergies to countless medications, made a house move out of the City with the help of friends and family, and virtually slept for 3 years between medical appointments and self-analysis/psychotherapy sessions.

    Sleeping Beauty, I was not! I was in hell on earth. I developed crushing headaches and sickness bouts which lasted for 3 days at a time, and I was treated with injections of Pethidine and Anti-emetics each time they happened. One day my cousin saw me in the middle of a bout of the massive headaches and sickness ~ said "you've got a migraine", get the Doctor to give you Imigran!". Within hours of taking Imigran, the headache and sickness 'magically' disappeared.

    I've never have had any 'remission' from M.E./Fibro.

    I've no idea how I went from 'flat out' energy, up for anything, fit as a fiddle, "lets go round the golf course again today" (I took the scenic route, I wasn't good at golf but I loved the golf courses!) to virtually 'flat out' in bed, in constant pain, and dealing with so many 'sensitivities' to so many things for decades. It's like I've had two totally different lives in the one 'life'.

    And now I appear to have all the "symptoms" of Hypo, but the blood test results say 'no'. I am too sore/tired to haul 16lbs of additional weight on my small frame and it appears the only way I'm going to lose that weight (and I know 'how' to eat well and stay slim!) is ~ as of this moment in time ~ to virtually starve myself, which is not the right answer to what I'm going through ~ very far from it.

    It's like a farce: "The computer says NO" ~ live with it..! I don't yet know how to 'live with it' ~ I've a lot to learn, and my energy is limited. I've more than used up my brain capacity, lol ...

    Hope at least some of this made sense. Barbara

  • I think you will find that you have a hidden infection sustained in the alterations to your cottage ..i cant remember what they call it but its a weird thing that undermines every system of the body its a it like candida will try to remember its actual name

  • Hi reallyfedup,

    I can't argue with you about that ~ if you can recall the name of the infection, I'd be much obliged.

    I gave a lot of thought to something very similar after I left the Cottage. It needed a full damp proof course, so the old 'lath and plaster' walls were cut open to a metre up the wall. God alone knows what was in there? Also, I took off layer after layer of old wallpapers, some with dye which permeated through other wallpapers, and I got down to the original whitewashed walls. Breathing in all that steam and all that heat being on goodness knows what on the walls ... Gross..! I'd have been better just lining the walls! Hindsight and all that ...

    The place needed woodworm treatments throughout the rafters in the roof, not that I was there when that was being done, but these 'treatments' were fierce in themselves. The kitchen had comprised of a sink and a cold water tap, lol. The unfunny thing was the open drain in the corner and the kitchen floor had to be totally screeded over, as the floor was angled towards that drain (which hadn't ever any smell but may have been linked to a septic tank at some point before mains drainage, etc..

    The place needed totally rewired and replumbed, so no lead and any asbestos had to be removed. No bats, so nothing related to them. No lead paint, as it was all the old, original wood doors, skirtings, ceiling linings upstairs, etc., which had been sealed. No radon detected.

    The place was gorgeous when it was all done, but I was not able to go back to work so I had to sell it. I did superbly from it financially ... but as I found out, health's infinitely more important than that sort of money.

  • All i remember is its a fungal /spore like infection which is released when very old walls etc are demolished or touched

    it needs lengthy course of Nystatin or better plus caprilic acid ? All as you would for Candida

    It masked as ME/CFS/RA/Fibro

    you might find a good medical herbalist would actually have better medicatioms

    i do know if its there it takes time and a strong dose of anti fungal meds and you are likely to get herxheimer reactions

    i dont think i still have any paperwork with the bugs name because its over 30 yrs ago as part of our quest to discover whst was wrong with my husband

  • Hi reallyfedup ... Ah! I did all of the above ~ the mega antibiotics, had a superb medical herbalist, had a wonderful 'healer' ~ neither the anti-biotics nor herbalist made the least improvement in my life! The only people who did make some difference were those at the Homeopathic Hospital who got me off of wheat (which was a major toxin to me ~ as they explained it's so 'unstable' that at every movement in it's journey to becoming a foodstuff, it's treated with 'stabilisers' which are toxic to the majority of people ~ who don't even realise that something as simple as bread and bakery foods, cereals etc., are making them very ill.

    The Healer, an absolute legend, and his partner, were awesome (you know you'll try anything when you're totally desperate!) ~ and he immediately told me that I needed Iodine, which I could get from my cat's Vet ~ and all he asked me to do was put it on the palms of my hands, and if I didn't believe him, then just to sit and watch it disappear into my hands as my body soaked it up! I did that. He was right. I've never be so surprised by anything. I ended up putting it on the soles of my feet as well. Same thing.

    He also told me (if you're into this stuff) that my Chakras were out of alignment, (like What???) and he said he'd sort me out in two minutes ~ it was more like 30 seconds ~ my blinding headache and nausea which had responded to no medications, and which I didn't know for countless years were Migraines, just disappeared. I always spoke to him on the phone as he was so far away. He'd never seen me. He didn't feel any need to question me apart from me saying I felt unwell and it'd been recommended that I speak with him.

    I'd felt a strange internal movement in my neck and head, and he just said "well, you feeling okay now?". I hadn't even told him I'd a blinding, sickening headache. Sadly, I didn't know that he was suffering from cancer, or that he was in his 80's ~ and it was even in his local newspaper that the Hospital medical staff couldn't believe that he had stayed so 'healthy' and well looking, while the cancer killed him. His partner was great at sorting out my sick/headaches after David's death, then she got married to a deep sea diver and moved all over the world with him.

    I could go on and on about what I've tried, done, learned ~ but it's not really the time or place.

    I'm having to deal with the NHS at the moment to get the medications which I need but have now read that having M.E/Fibro its unlikely that any test for Thyroid problems will ever come back as anything other than 'clear', because of the hormonal changes within my body's make-up caused by having M.E.

    Now I need to have my Doc look at my and my obvious "symptoms" and not consider that figures on paper are more relevant than what she's seeing in front of her eyes.

    How is your Husband doing now? Barbara x

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