Carpal tunnel syndrome diagnosis?

My gp thought I had CTS, sent me to a specialist physiotherapist who thought i had CTS who sent me for nerve conduction tests with a senior nurse who told me I had mild CTS. Today I went to the Orthopedic dept where I was told by a doc that my conduction tests had been reviewed by a pyhsiologist (sp) who had never spoken to me let alone examined me and he decided I didn't have CTS! When I asked what was causing all the pain and weakness in my hands he said he didn't know, that it could be tendonitis, to wear a fuller wrist splint and rest! I have neuropathy amongst many other conditions so my nerves are weird anyway. I'm just so upset as I thought that I had a condition that could be cured unlike all my other diagnoses that are chronic and incurable. Sorry for the long rant, but any advice would be greatly appreciated. Thank you.

92 Replies

  • You can get carpal tunnel syndrome through damage to nerves/tendons in hand but it is also a clinical symptom of hypothyrodism.

  • I've had hypothyroidism since 2006 and have just asked my gp for a referral to an endo. I'm just so fed up, it's just one thing after another. Thank you very much for your reply and link.

  • It would seem to me that you are not on sufficient medication/or one that suits you if you are developing new symptoms.

    Have you had a recent blood test for your thyroid gland, if so get a copy of the results with the ranges and if not request a Full Thyroid Function Test, TSH, T4, T3, Free T4 and Free T3. and post them on a new post.

    I know it is very painful as I had the condition myself but was fortunate to have hands made better with specialised physiotherapy. Mine wasn't connected to hypo but work-related.

  • I'll post my latest results shortly.

  • I've put my latest results up.

  • The physiologist at Ortho clinic thought different - and why?

    I also first saw GP about wrist pain & pins/needles/numbness - a long while ago ...she tapped wrists saying "it's beginning to look a lot like C.."

    ...arpal tunnel..---> to Physio (they always check with physio - cheaper) then ---> Nerve conduction tests (negative) so it must be ...

    something else.... further up... shrugs shoulder smiley? , yes I've always had a bad neck.... ---> Xray!

    Maggiet - what are your other incurable diagnoses, may I ask?

    Mine was helped by sorting....

    Vitamin D (NOT a mere vitamin, a pre-hormone - aka Sunshine) - works with calcium, magnesium, Vit A and K2) Iron, folate and B12- but I'm sure I'm not the only one here who's avoided CT surgery (so far) .... J :D

    Dr Lowe had a lot if info on this

  • They have made an assumption purely on the nerve conduction test. The doc I saw I felt couldn't care less, probably because they'd all just had their Christmas dinner which was why my appointment was running late! I gave him a list of my diagnosed conditions which are (stand by for long list!) Migraine, tinnitus, jaw pain, gum infections, urticaria of scalp and arms, hypothyroidism, fibromyalgia, small fibre neuropathy, arthritis in hands and big toe joints, gynae problems, blood and protein in urine (cystoscopy done, no nasties). He just glanced over it and passed it back. I'm 'insufficient' in Vit D at the last test so I take 10, 000iu a day. I also have B12 jabs every 6 weeks. I have been referred to an endo, so will see what that brings. Thank you for your reply and I will get some medical info that Dr Lowe wrote about to show my gp.

  • You know, I think you can extract 'hypothyroidism' from that list, and use it as a heading, and put all the rest underneath as symptoms! Because that's what they are - symptoms of Under-treated hypothyroidism. You must be dreadfully under-medicated!!!! What are you taking?

  • Hi grey

    I'm on 100mcg of Levo once a day. When the neurologist diagnosed me with small fibre neuropathy and I asked him what had caused it, he said it was a 'migrainey, thyroidy thing'.Not helpful.

  • Blimey! He doesn't even speak English! I'm sure 'migrainey' isn't in the dictionary - not even in a medical dictionary!

    Well, I don't know what the connection is between migrains and carpel tunnel, except that they're both symptoms of low thyroid.

    If you are taking 100 a day and still getting all those symptoms, there are two possible causes - a) you aren't converting properly - but we'd need FT4 and FT3 to know that - which could be due to low cortisol or nutritional deficiencies. b) you have nutritional deficiencies because you're so hypo. And we come full circle!

    Or, of course, you might just need an increase in your levo.

    So, what is needed is testing, testing and more testing, followed by supplementing, supplementing, supplementing. T3, magnesium, B12, vit D3, iron/ferritin, etc etc etc.

  • I'm hoping to be able to get the tests done when I see the endo. Emphasis on 'when'!

  • I LOL. over Blimey! I am in the US..I love that word! I think i will start using it!

  • lol Could have said something more explicit, but this is a family show!

  • I so agree! Was thinking that too. Everyone of her symptoms could be just from poor thyroid treatment and/or Hashimotos, which has created terrible amounts of inflammation in my entire body, even when on t3 only, i am stiff, sore and tired, puffy etc.. She looks to be someone who is not converting. I bet her rt3 is terrible!

  • I also had nerve tests on wrists and was told would need an op on both wrists. That's when I researched and found a doctor whose physiotherapist sorted my hands/arms (which were painful too) out and I've had no problems since.

  • That sounds wonderful, I feel just a bag of pain at the moment.

  • I finally went to Dr in January and was referred for the tests which diagnosed mild carpal tunnel (hate to think what severe would be like). When I said that to gp he offered to refer me for the surgery but frankly I don't want the hassle of all that time off with horses to look after etc etc.

    In my case I really think there is a strong link with a not high enough level of vitamin D. I also had terrible tennis elbow and golfers elbow both sides, really in a lot of pain. But it always clears up in the summer, hence why I think it's linked to Vit D. This winter I'm now taking 5000 IU of vit d a day since the first niggling pains started and I'm doing really well compared with previous years.

    Have you had your vitamin D level checked recently, I was suffering with CTS etc with a blood test level of 50 which counts as adequate. Now my level is up in the 90's with the higher level supplementing I am really feeling an improvement.

  • Hi Poshpenny thank you for replying. Like you, I was told that it was a case of mild CTS by the very experienced lady that did the tests, but the physiologist whom I've never seen, said it wasn't! As you'll see from my reply above I take Vitamin D so I don't think it's that, though I'm really glad that it worked for you. Thanks again and I hope you and the horses have a wonderful Christmas.

  • I have had one wrist/hand operated on and it was fine. The other, have had the tests because of pins & needles etc. and was told it is severe CP. However I have been doing some yoga moves and taking Vit D and B12 and its definitely not so bothersome.

  • My vit D is 110 /CRP (measures inflammation) 8.4 /T3 4/ B12 (2 measurements) 1 active 128 and the GP one is 669. Are they about OK. I don't have a thyroid gland and take 125's and 100 alternate levo.

  • Carpal tunnel goes hand in hand with hypothyroid thats either untreated or undertreated

    what are your thyroid test results

    what thyroid meds are you on

  • I'll post them shortly. I'm on 100mcg daily.

  • I agree, there are NO doctors or Endos who will EVER say this! It seems insane but there it is! Operate is about all they want to do BUT most if not all Carpel Tunnel can be healed with the right thyroid meds, supplements and vitamins like B complex and B6. Same with Tinnitus! Do not listen to them, seek a Naturopath or a Functional Medical Practitioner who gets to the ROOT cause of everything in your own body and will clear and clean it up from there with your help of course! I was also offered surgery and thank God I did not listen to my GP.

  • I have been thinking of going to a naturopth in the New Year, mainly because I just keep being given meds and then more meds to counteract the side effects of the 1st lot of meds!

  • This is the whole point. Many understand this to be a conspiracy of Big Pharma... and which is keep them all from fetus babies to octogenarians on medicines their entire life...because it makes them RICH! Not the idea to HEAL them. This is why Functional Practitioners, Naturopaths, Functional Nutritionists are all trained to do NO harm, not pump the patient with drug upon toxic drug and get to the root cause and heal the person! Seems so simple and yet, the BMA would tell you this is dangerous, etc. All Lies to promote their own agenda! I was a Nurse in America and I left for exactly this reason...30 years later it has gotten worse not better, which I knew then. Holistic Medicine is the original and best medicine and in my knowledgeable opinion, the way all medicine should be practiced. Not here's another prescription and see you in 6 months!! That is sickeningly insane and not productive or healing at all...the agenda is always to just keep you sick! Most Dr.s and Endos are blind,brainwashed and refuse to see even the auto immune issue of Hashimotos, which is why they never recommend a change in diet, getting the gut right so it feeds the healing and allows nutriments to be distributed to the brain, body and heal it as well as why the issue ever began, like radiation (see your dentist, mercury fillings, X-rays right on your thyroid with NO protection!) and then there is diet, adrenal fatigue and so much more! Not to stick their necks out and even read all the latest data and books out on Thyroid and Adrenal issues is just more proof that they have NO intention of healing you. They stick to their outdated and harmful old ways and let YOU suffer so THEY don't get stuck off! How sick is that, honestly????

  • Please, Please, find Louise W. for a list of decent Thyroid doc's in your area!!!

  • Will do, thank you x

  • It really looks as tho your Hypothyroidism is not being properly treated, not at all. All this can be caused by being Hypothyroid. Have you had free t3 tested?

  • No it hasn't, but I have asked for a referral to an endo, so hopefully it'll get done then. I've always felt that my hypothyroidism was at the root of all my health issues. I was fine until that went, very fit and healthy and now I'm registered disabled and my wonderful hubby has to do everything. I'm trying not to pin my hopes on the endo being able to help!

  • No, well, if he doesn't, you'll maybe have to take your treatment and your health into your own hands before the 'trained professionals' do any more damage!

  • So agree grey, the doc yesterday didn't even look into the thyroid aspect. I felt he was de-mob happy for the hols. I've an open appointment for 12 weeks. Waste of time.

  • :(

  • Good that you aren't pinning your hopes on the Endo. because i seriously doubt he will help, i'm sorry to say! They are very uneducated on Thyroid, Autoimmune, uninterested and TSH obsessed. Do you have Hashimoto's?

  • As requested here are my latest test results from 25/04/14

    TSH 0.18L range 0.5-3.9 mU/L

    Free thyroxine 18 range 19-19 pmol/L

    On 14/01/14 my results were

    TSH 1.36

    Free thyroxine 19 same ranges as above.

  • OK, so that's not very helpful, either.

    Forget the TSH, it's useless except when it's high. Yours is probably too high for you considering you're taking levo. The T4 is up the top there (is the range really 19 - 19??? Not much room to adjust, there!) BUT without the FT3, we're none the wiser. I would imagine it's low, which is why you have so many symptoms. Therefore, you arent converting. So, you probably need some T3 because that high T4 will be bunching up in your blood there, and making you feel bad and/or converting into rT3 and blocking your receptors. Let's hope the endo understands this! Fingers crossed!

  • Eek, sorry about the typo. I'm hoping the endo will suggest a trial of T3 to see if it helps.

  • I hope so too! But if he doesn't suggest it, YOU suggest it! Those that don't ask, don't get. :)

  • Oh I certainly will. I'm very proactive when it comes to my health and keep asking till I get the tests I want!

  • That's exactly what i thought..really should back off the t4, i mean cut it way back or out. You are a prime candidate for t3 only..really. I hope Shaws will put up some links for Dr. Lowe!

  • Hi Maggiet, I saw a hand and wrist specialist for 6 years before being diagnosed with Hashimotos, ( not linked to the hand specialist unfortunately) I had wrist spints too. I also had dreadful tennis elbow and trigger finger. I do have arthristis in my fingers and wrists. I too was deficeint in Vit D3, but didn't address that until I came on this forum. All the above cleared with sufficient thyroid meds. I can't help wondering if you up your dose you would improve. Nothing much happened from my experience if you're taking levo, until I got up to 170 mcg.

    I have terrible tinnitus and hearing loss in my left ear. Unfortunately nothing to date has helped that.

  • My dose was actually reduced on October 2012 as my free thyroxine was 23 and TSH suppressed. I'm sorry to hear that you have tinnitus also, it's really horrible isn't it?

  • The blood tests don't measure T3 in your cells, only what's in your blood at the second the needle goes in. The blood tests have never matched how I'm feeling, I honestly take them with a pinch of salt. Did you feel better on your 2012 dose? If only doctors would treat until symptoms start to go away like they used to!

    My tinnitus started 14 years ago. First in my right ear, the sound of an engine running. Then I had grommets in 2005, which didn't help the feeling of fluid in my ears, my left ear drum was flat, and a moderate hearing loss detected for which I have a hearing aid. Unfortunately after the grommets op, I developed a loud white noise sound in my left ear. Now my head is just full of noise, I can hear it over a loud TV for example. I was hoping treatment for my thyroid, and B12 injections would improve it, but unfortunately it hasn't.

    You have my sympathy, hugs.

  • Thank you so much, hug gratefully received. I was referred to audiology and was given a sound box of different sounds to use at night which is really helpful. I was also given a small earpiece to put inside my ear which emits white noise which isvery soothing. I hope you can get something to help with the tinnitus. Folk don't realize how awful it is until they get it too!

  • Hi Maggiet, I had a hearing therapist until 2 years ago, to be honest I didn't see the point. I think it was about reducing stress, but that doesn't happen for me in hospitals! I had the little white noise thingy which I used to use. It's just training your brain to listen to something else I think. The only thing that reduces the really loud left ear tinnitus is my hearing aid, because my ear isn't constantly straining to hear. I've noticed additional stress and not sleeping turns the volume up.

    What is interesting is my eldest daughter who has unfortunately mirrored me with hypo, and PA is now getting tinnitus, I'm wondering if there is an auto immune connection with this too?

  • I think tinitus is linked to autoimmune.I have had it for several years and it has worsened in the last year. Somedays it takes over so I put a talking book on my MP3 and try to drown it out.

  • Hi Flossyjoolz, I'm sorry you're putting up with this too. It's really debilitating I know, I'm sure it contributes to my insomnia too, so it's just so hard to get on top of. I haven't found anything that helps, now I'm wondering if low cortisol is contributing as it's worse the colder I am, and when my thinking gets very slughish and I just want to sleep, I'm sure you know what I mean. I'm very stressed today trying to arrange a hospital appointment that's problematic, cold at 36 deg despite 75 MCG of T3, and I have one eye open, and the tinnitus noise is off the scale :-(

  • Helcaster, have you tried magnesium? Magnesium is important for ears both for hearing and balance. Low magnesium also causes tinnitus. Mine has improved since I started supplementing. Not completely gone, but I have to listen for it otherwise, I just forget it.

  • Hi grey, nice you've pooped up! I've been taking up to 500 mg for the last 3 months. I read it helped to heal anal fissures and I was at the end of my tether with 3 active ones I had over 11/2 years. Magnesium helped my motility and has been a godsend, I'm in far less pain now. It has helped my general body pain too. I had a fibromyagia diagnosis 15 year ago, not that I ever believed it! Unfortunately thus far no improvement with tinnitus, it's so bad I can almost feel it moving in my head. It left my ears years ago, my whole head is full of noise, if that makes sense.

  • Do you take zinc and D3? The magnesium on it's own didn't do much for me, the D3 on it's own didn't make any difference to me, but when I added in a little zinc, it was like a miracle! Everyhting changed. And I know it was the zinc because I ran out about a couple of weeks ago and kept forgetting to order it. Now, I can't wait for it to arrive!!!

  • I was deficient in D3 at 34, but my doctor didn't do anything. Since I came on the forum I supplemented and got up to 80 something. I haven't been taking much since, I go two weeks without taking any. I'll start to take it daily again, I have zinc but I haven't taken much of it to be honest. I also read a couple of days ago zinc can lower your copper. I'll start taking that again.

    Really pleased it's working for you!! I'll take the D3 and Zinc now! Thanks Grey. X

  • It can lower copper if you take too much. But if you're deficient in zinc, it will restore the balance. If you want copper, to be on the safe side, just have a bar of dark chocolate 99%. lol

  • The zinc is only 15mg, not sure if that's a low dose, I'll have to do some research.

    I think I can manage the chocolate Grey, it's the only thing that puts a smile on my face :-) x

  • It's funny, but I don't like chocolate. I used to like milk chocolate, years ago, but then went off it. But when I started supplementing with magnesium, I started craving dark chocolate - the darker the better. After a couple of months, I went off it and haven't touched it since. Don't know what that means. lol But I do believe the body knows what it wants and tells you, if you listen.

    My zinc is 22 mg. I don't know either if that's a high or low dose. I shall have to research it a bit more.

  • If I'm really on the floor tired grey, that's when my craving for chocolate starts. I don't buy it myself because I would eat it every day!

    If I go without chocolate for a few weeks, then I lose my taste for it. It's amazing how sickly sweet things become if you cut out sugar, which I do from time to time. I find I can only eat good quality chocolate like Green and Blacks now. Cadbury's seems to have gone down the pan, it's just sweet and fatty now. I swear kraft has changed the recipe. I used to live in Bournville and we would get the smell of the chocolate blowing over lol!

  • I totally agree with you about Cadbury chocolate. Used to be my favourite but now it tastes like candle wax!

    I've worked in three different chocolate factories - no, never for Willy Wonka, but George Paynes, Pascals, and a company that did work for lots of other companies such as Rowntrees (oh, I loved Rowntrees!) and Lindt. These days, if I were forced to eat chocolate by some uncharitable person that likes to see me suffer, it would have to be Lindt, or a French company called Milka - which is surprisingly good. But I wouldn't give you twopence for Belgian chocolates, or Suchard or any of those.

    Working in quality control in a chocolate factory makes you incredibly fussy!

  • Cadbury's is such a poor quality now, I can't stand the plastic wrapper either. The whole of Bournville as you know grew around the chocolate factory. There was such pride working for such a fantastic company. Not any more, we were all gutted when Cadbury got sold off.

    I like Lindt but I do always look at sugar content and percentage of cocoa solids. Cheap chocolate is awful.

    Good to have inside info re chocolate, I was always hearing about finger nails in the chocolate at Cadbury's! I'm sure they were removed though!!

    Just looking at my previous postposts today, my typos are hilarious. Pooped up?! X

  • Well, don't want to give away any Professional secrets - lol - but the majority of confectionary returned to us was done so because the shop the person bought it from had kept it in bad contions - too hot, too damp - or kept it too long. And nothing to do with the factory. Never saw a finger nail!

    I did, however, once find a finger nail in a packet of fresh pasta, and another in a tin of grapefruit sections! Both unpleasant experinces!

    Cadbury were bought by an American company, weren't they? Don't want to ruffle any feathers, but if you've ever tasted American chocolate you'll understand why the quality has gone down! (Sorry, American chocolate-lovers, but it's true!) lol

    I still have nightmares about the cheap chocolate of my childhood, just after the war, when everything was rationed. There was something called a Smoker's Set (yes, things were different then), with so-called chocolate molded cigars and lighters and pipes etc. The 'chocolate' was sort of gritty, as if it contained dessicated coconut, but it didn't taste of coconut! I can't describe the taste, but it was awful. And I thought, if this is chocolate, I don't want to know! But then rationing ended and Cadbury's milk chocolate appeared, and I was in heaven! lol (Same story, more or less, with ice cream.) Such a pity that things have changed.

  • Excuse delay, grey, only just got rid of my visitors, just trying to catch up now. I'd rather not eat cheap chocolate and after Christmas I don't think I could eat any chocolate for months!

    Yes Kraft bought Cadbury's, when you think of those awful processed cheese slices, you get an idea what they've done to our chocolate! And of course all the redundancies they promised would never happen :-(

  • Don't Kraft own suchard and milka? They did own them back in the 90's at least, my mum used to get them at reduced prices at the Kraft staff shop in Banbury.

  • Yes, apparently they do. Also Côte d'Or and Toblerone. But the chocolate doesn't seem to have suffered. Although I've never liked Toblerone.

    However, I read yesterday that Cadbury's creme eggs won't be the same this Easter because they've changed to chocolate formula - I dread to think what to!!! So sad.

  • And here's the very article!

  • Helcaster..have you had your rt3 checked? If it is high, your t3 meds won't work. I have been through this myself.

  • Hi Faith63, I weaned off levo last August, I was up to 200mcg over two years, and nothing much was happening. I decided to self medicate. I then went on to Armour, now for the last 2 months T3 only. I've never had my rT3 tested. To be honest I'm putting weight on with T3. I was on a massive dose before, 3 grains of Armour and 6 xT3 tabs and still feeling nothing at all. Now i'm on 75-100 Mcg T3. I think my low costisol is blocking things, plus I have very high inflammation in my blood tests. One thing that definitely doesn't help is one drug I have to take for a bladder disease, it lowers stomach acid, and messes up liver enzymes. A pharmacist warned me I'd never do well on thyroid meds. I'm taking T3 sublingually.

    Tell me your story please!

  • I am sorry that you are going through all this! I know it is frightening and terrible and has ruined years of my life! Some of Dr. Lowes patients have been as high as 300mcgs t3..and i would not do it sublingually, it won't be absorbed this way! Dr. Lowe never said to do it like that either. It is absorbed in the stomach. Maybe some apple cider vinegar for making some more acid. It seems you are Thyroid Hormone Resistant!

    I wish i had the energy to tell you my story! In brief, i have Hashimotos, spent one year Hyper, without diagnosis, then went Hypo, gained 30lbs in 3 months and ached all over, acne, swollen, my stomach stopped digesting food..terrifying, still no diagnosis. Then my blood sugar got high and i was diagnosed as Type is all about this inflammation. I had to go online, research and basically diagnose myself. No doctor, not one of the 20 specialists recognized Hashimotos or Hyper or Hypothyroidism!! I despise them and don't trust them at all. I would rather do my meds wrong myself..duie at my own hand, than let them kill me! I got worse on ndt, t4 did nothing..hyper to hypo symptoms for years, never well. Have been on t3 only for 4 months or so now, second time trying this. I also stopped dairy which stopped the reflux. My food digests now, I swell and de-swell, never quite right, still puffy and now gaining weight again, with lower temps and acne, belly swelling. I feel as long as i have this autoimmune disease, i will have high inflammation and swelling. Am using reservatol and am trying LDN, Omega's etc..

    Do you have Hashi's too?

  • Hi Faith, yes it's Hashimotos. I had a hospital infection after surgery 16 years ago and it's triggered all my ill health. One Drs opinion is that I've had under active thyroid for 20 yearsyears though. I was only diagnosed after putting a lot of pressure on my GP, 3 years ago. My hypo symptoms have remained, even my temps are still low, only 36 this morning, that was after T3 3 hours before. I'm often in the 35's.

    My antibodies were done last year and they were just under 600.

    I've had inflammation since the infection. ESR 40 something, I'll check, CRP 10. Definitely getting worse.

    I have interstitial cystitis, so have to exclude anything acidic to help control the pain. You can't seem to get Elmiron here, so I just have cimetidine and hydroxyzine. Had problems with anaemias and low B12, injecting myself twice a week.

    I 've lost some of the mucin, but still have dry skin swollen tongue, muscle and joint pain, extreme fatigue, slurred speech.

    I've had two adrenal stress profiles, cortisol extremely low on waking. Total 15 for 24 hours (21-44) something like that. Lost my body hair, and had a year of fainting in the shower.

    I had a go at LDN on my GP's advice, but felt it was making my adrenals worse. It could be the stuff I sourced on the internet though, so still open to that.

    Another weird symptom is chronic diarrhoea which started the same time as the infection, before I took any meds at all.

    Like you just want to improve!

  • I'm so sorry! My body hair has become very slow to grow back starting about 1 month ago. I used to have stubble on my legs and armpits in the morning. Now, not much at all. Yesterday i felt woozy and temps were low too. Low Thyroid can make Cortisol seems to go hand in hand. Raising thyroid should bring it up. Maybe you need to up your dose since it doesn't work? Can you try some HC for awhile? I swelled me up like a balloon, gaining 2lbs per wee! I too have low, but in range morning cortisol, that just stays flatlined all day. I awake tired, tired all day and never more tired for bed. I have terrible insomnia. My Pituitary has become squished sometime between 2009-2012 and i don't know what that is doing to me either. LDN, seems to make me more depressed, seems too but hard to say. Like you, i guess, i start and stop it, not knowing what to do or what it is doing to me. Maybe we are just not comfortable with using it in our poor state of health right now? I too lost mucin/myxedema, on t3..and i had high hope, like you, but it didn't work out and i am, terribly upset by the whole thing.

  • I'm completely bald in my armpits, it started to disappear 10 years ago. 80% of pubic hair gone too. I've pointed this out to my GP and given her a patient leaflet on adrenal insufficiency, written by British Endocrinologists describing all this as symptoms. It took another adrenal stress profile a year later to get her to take notice, my morning cortisol was 2 in July. She put me on 10 mg of HC, but I foolishly reduced my thyroid meds at the same time which made me feel terrible, high blood pressure and rapid heart rate, so she stopped them after 3 weeks. I asked her in July to refer me to an endo who is good with adrenal insufficiency, Dr Karavitaki, she forgot to do it. I called the doctors at the end of October to ask why I hadn't heard from the hospital! She finally did it end of November, too late as Dr Karavitaki is leaving in January and I can't get an appointment. Another brick wall :-(

    I no longer think I'm ever going to be well, so I've lowered my expectations to stop me beating myself up about it.

    I'm exactly the same as you faith, get up so exhausted I often start heaving with the nausea, but then I can't sleep until 3 am! This doesn't help adrenals, but I'm so wired at night.

    I had a heamhorrage, I can't spell that, but I was an emergency admission 10 days post op. The infection I told the ward staff after my op (a UTI) but they didn't test my urine, showed up immediately, but then i got the wrong antibiotics so it really was in my system nearly a month. That screwed up my bladder, now it's really diseased. I do think all of the above has affected my hpa axis, i also had long term steroid injection into joints. I have said all this but the docs seem to know nothing :-( My last hope was Dr Karavitaki.

  • I am so sorry that you have gone through all of this. My hpa axis is messed up, i know it is. I need to see a Pituitary specialist in Boston, i guess, although, i know my endo could order the right tests, if she believed i needed more testing. Sometimes i sweat and then get chills, my sinus are blocked for 1 year now and i have tailbone pain too. I like you, know i will never feel like i used to, ever again, but i know i could do better than this. If i could just sleep!! I know it's a really bad. 3 or 4 am..and still wide awake and all day, almost falling asleep. I know something is wrong. My metabolism is down regulated for some reason and no doctor really cares to find out why or is interested in helping me get better. I is terrifying. It has ruined my life and relationships with my children. Maybe you could get some HC online and try it again. We must not give up all hope.

  • Hi Faith, no we musn't give up you're right. I'm sure too if I could some proper sleep I'd probably feel a lot better. If you're sleep deprived thyroid meds aren't going to give you energy!

    Are you really heat intolerant? Even at 19 deg, I'm getting really distressed, it's more like it's 30deg. I can't seem to regulate my temps, different during the day and different every day.

    Do you have problems with your eye sight? I'll read for a bit and then get double vision for hours after. Now it's really blurry a lot of the time. Running eyes too.

    Yes sinus pain, I get face pain and my face goes very cold, then a huge migraine :-(

    I sleep at the cinema, I never see a film, even live music I've been asleep! If I'm a passenger in a car within 30 minutes I'm asleep. Yet at night I feel my best and quite alert.

    I've put on 5 stones over the years, I eat porridge made with semi skimmed milk and water, soup with corn cakes, then my evening meal, home made, lots of veggies. Why am I so fat?. My GP just thinks I'm lazy, she advised me to join a walking group lol! I get so weak and breathless walking 50 yards. I have really painful feet and calves too. I've told her the fatigue is like being drugged, she just doesn't understand.

    Which tests would you like done?

    I understand, my husband and I spilt up after 20 years, 3 of my 4 children pretty much ignore me. It's rotten to feel there isn't the support or practical help I need. I've always been there for them.

    This forum is fantastic, we're so lucky we can exchange wisdom and experiences.

    Hugs. X

  • It is so cool, that we can talk to one another..across the big pond, so they say. Who would have ever thought?!!!

    I am sorry about your husband and children. My husband died! I was under terrible stress when he was ill, had female hormone imbalances, hysterectomy, ovary removal, lots of anti depressants, Anti anxiety meds, anti biotics and then came Hashi's..i see why it happened and i blame the doctors! They never tested my hormones ..just doped me up.

    Yes, my feet really hurt, like i am walking on bare bone. I have found these Skechers Go Walk, slip on shoes..the only thing that allows me to stay on my feet! I cannot tolerate hot or cold and if i wake up earlier than usual, i sweat profusely and then get chills. I feel like i am coming down with an illness, much of the time. I have not had a nap since 2009. It is our body's unbalanced hormones and/or the autoimmune disease. Our bodies are exposed to a terrible germ or allergen, all the time! Our bodies think our Frickin' Thyroid is a flu bug or something!!! And, i feel like that is the case, most of the time. This accounts for our swollen tongues, sinus's and eye issues, i swear it does! Yes, i had the same great vision all my life and lost it when my throid went Hypo in overnight, my eye are got puffy, upper eyelids drooped and my vision went blurry. That week i gained 11lbs! All fluid..edema and mucin. No eye doctor really believes me and says there is no connection!! I really do despise doctors!!

    Try artificial tears..the eyes can run when dry. They helped me some. I put them in at bedtime. I thought i had Thyroid Eye Disease, this Summer, all Summer they drove me nuts. I developed double vision in one eye. I went to a Nuero Ophthalmologist, who said Hypo will cause the swelling around them and that's all!! He is supposed to be one of the best in the Country too. I can't tell you how much i hate doctors! I have developed an Astigmatism, which causes the double vision, i am also sensitive to light..all not thyroid related..!@$$#%!!! i know it's not true!! I was hyper for 8 months recently..that's when my vision changed again..too much of a coincidence! So, i need glasses now. Do your eyes look normal? Mine really don't, wrinkled, sagging lids, puffy, runny..very self conscious of them. Does almost sound like allergy doesn't it? Yah, Allergy to my own Thyroid!

    I have had tests on my heart, heart monitor, stress tests, eeg, ekg, ft4, ft3, rt3, antibodies, all kinds of colonoscopies and x rays, scans, MRI's, Tons of blood tests, food sensitivities and allergy tests, celiac blood, biopsy testing, Adrenal Stim tests, saliva, urine and blood cortisol, H1C..for diabetes..i know i have forgotten some. How about you? How is your blood sugar and cholesterol? Mine are/were both high. Sometimes i'm type 2 sometimes not.

    The forum has been wonderful!

    What time is it where you are? Where are you? I am in the mid western part of the USA.

  • Also, wouldn't a person with adrenal insufficiency, have low blood pressure? Mine has gone pretty high today!

  • Hi faith, I'll send you a private message. :-)

  • Faith, your cholesterol and blood pressure are high because you are hypo. But there is also a suggestion in there that you have low HGH - which would figure if your T3 is continually low.

    As to the sore feet... I have that too, so my ears always prick up when someone mentions feet... So, the other day, I'm reading on another forum, and someone mentions feet, sor feet, and another person says : sounds like Bartonella. What? So, I start googling...

    And that sounds like me! Well, that's just the start, I went on from there, but it does sound like me. I've had sore feet since I had scepticemia last year. Didn't have it before, so I'm thinking it's not thyroid.

    So, I continue reading on the forum and someone says they had it and got rid of it with cortisol cream... So, I've just ordered some to see :

    I'm keeping my fingers crossed it works!

  • Whoa, whoa, Helcaster??? Semi-skimmed milk and water??? Why? From that little excerpt, it seems to me you need to over-haul your diet. Corn-cakes? Do you know how bad corn is for hypos? Where's the B12 in all of that? where's the fat?? Without fat you are never going to thrive, and you are going to continue to mess up your hormones. And come to that, where's the protein? How many of those veggies are goitrogens? You may be what you eat, but you are also what you don't eat! I think you need to have a closer look at all that.

  • I put weight on just thinking about it Grey. I used to have skimmed milk in everything, all my adult life. I do use butter now, and put cheese on the crackers, I know you get B12 in dairy. The corn cakes are gluten free, just trying not to eat bread. I'm so restricted with food because of interstitial cystitis (no acid) I'm having a hard time to know what to eat. I do eat a lot of stews and casseroles, sometimes I can count 9 veggies in total, having a lot of garlic in everything too. I do eat broccoli, cabbage, sprouts etc but I thought it was OK if you cook them well. I'm eating full fat yogurt most days too. I do feel a bit lost, still putting on weight with T3!!

  • I believe I'm right in saying that the B12 is in the cream. If your milk is skimmed... Besides, it's not just the lack of fat that is the problem, it's the processing the milk goes through to get rid of the fat. Why don't you just go on to full fat? It's not the fat making you put on weight. Eating fat doesn't make you fat.

    Doesn't matter if the corn cakes are gluten-free, they aren't corn free! And corn is a very potent goitrogen. And probably GMO!

    Yeah, 'they' all say that about cooking goitrogens makes them ok, but 'they' don't really know what 'they''re talking about! The following post is what i've gleaned about goitrogens over the years from personal experience, reading and talking to people :

    So, an illimination diet would be very beneficial, I think.

    I also think that you should get some vits and mins tested, because what I discovered, at the time I was putting my dose of T3 up and up and up until I reached 225 and still felt no better, was that what I was really suffering from was mal-nutrition! That came from a combination of a low, hypo appetite and difficulties absorbing nutrients - plus the fact that our food isn't as rich in nutrients as it used to be. I feel so much better now that I've addressed my nutritional deficiencies. It's amazing how bad low B12, magnesium and zinc can make you feel! Not to mention vit D!

    But it still doesn't seem to me you're getting much protein. I take it you're vegetarian, but do you eat eggs? They are very rich in lots of good things. Remember, hypos need more protein than average. Plus a decent amount of fat. If you eat enough fat, it will satisfy you so that you don't feel the need to snack, you don't feel hungry. Don't skimp on the salt, either, our adrenals need salt. Plus lots of vitamin C.

  • I do crave dairy Grey! If my grandchildren come to stay I always buy whole milk and I love having the leftovers lol! I'll give that a go and just go to whole milk. I hadn't thought of the processes involved in taking out some cream.

    I'm not veggie, but I didn't eat red meat until 2006. I was diagnosed low B12 10 years ago, and didn't get injections as I should have done. I'm now injecting B12 twice a week. I'm also low in iron and folate, not from diet I assure you, so I get precriptions for both from my GP.

    The problem is low stomach acid due to treatment with acid lowering drugs, 11 years now. I have no choice, I can't get Elmiron for interstitial cystitis, so they throw the cheap acid lowering and antihistamines at you in the UK. Also I've had chronic diarrhoea since 1998. Every day, usually about 5 pm I get diarrhoea. It sometimes goes on for months and it can be several times a day. All I can do is try and control it with codeine. I often wonder if I'm getting much nutrition at all. I do eat non processed healthy food, I'll have red meat 2 to 3 times a week, then chicken, and I always have salmon once a week too. I don't like eggs, but I'll eat them if they're hidden in a dish. I will look at the vegetables I ought to avoid more, as I'm often eating them every day. Maybe that's why I have such high antibodies?

    Thanks for your help. X

  • I'm not sure that goitrogens would have any effects on the antibodies. Whether they have any effect at all dépends on what gland activity you have. But one can never take anything for granted. I take it you don't eat any soy?

    Yes, you must be right about the not absorbing thing. Those acid-lowering drugs are dreadful things! And could very well be one of the causes of you not feeling well. Doctors just don't seem to understand the effect they have on us! Plus the fact that they lower things like B12 and magnesium.

    I firmly believe that if your body craves something it's because you really need it. It's giving you a message and you ought to listen to it. There was never any good reason for the skimmed milk, was there. Unless you prefered the taste, but even so... Give in to your craving and get more dairy! I don't take cows milk anymore, not now I've found I can buy goats milk here - which I actually prefer - but I do crave cream sometimes. If I can get to Marks and Spencer's, I buy a quart of cream and just drink it as is!!! lol Makes my daughter feel sick, but to me it's heaven!

  • Not true about the sublingual, Faith! Lots of people do it and find it's what's best for them. I do it and I'm still alive! lol Even if, as some people say, the molécules are too large to be absorbed through the mouth, the tablet will be dissolved in the saliva and therefore more easily absorbed in the stomach.

    Besides, I have never seen any scientific proof that this method doesn't work. The manufacturers try to put us off doing it that way because if we absorb it better, we will need to take less, and that is not in their interests financially, is it! lol

  • If the manufacturers endorsed crunching, dissolving or anything else, I think they would have to include that in their testing.

    With medicines like levothyroxine and desiccated thyroid, higher doses don't always mean higher profit! Obvious example, 175 micrograms is three tablets whereas 200 micrograms is just two. (And 25 microgram tablets are more expensive than 50 and 100!.)


  • Whatever. But it still isn't in their interests financially for us to absorb better, because if we got better, we wouldn't need all those statins and slimming tablets and antiDs. (OK, so now you're going to tell me that it isn't the same firm making the statins and the NDTs! I know you, you sneaky thing, you! lol But it doesn't matter, comes to the same thing because they're all in cahoots with each other! I shall continue to take my T3 sublingually, I think...)

  • Really, her t4 is turning into rt3, making her more ill. She has got to cut that t4. Please don't increase the t4!!!

  • Firstly just TSH and Free T4 /thyroxine simply does not tell us whats needed

    its free T3 that is needed along with

    Vit B12

    Vit D3



    I am 100% convinced that many people simply do not and can never get well on lousy synthetic levothyroxine

    some need straight T3

    but many need Natural Dessicated Thyroid because it contains T1 ,T2.T3 T4 and calcitonin which is exactly what the normal thyroid produces

    certainly the only way my Husband , Daughter and granddaughters recovered their health was on NDT

    PM me for sources

  • Thank you very much for that. I'll send you a DM - if I can work out how to do it!

  • Maggiet, To send a PM click on Really Fed Up's username and then click on Send Message.

    Years prior to diagnosis I developed mild tennis elbow and CTS in my left arm and hand. Pysio helped tennis elbow but CTS was worse on T4 and didn't resolve until I was optimally medicated on T4+T3 although I still get some occasional and mildy irritating numbness in my left hand.

  • NDT, flares up my Hashi's horribly. I have tried it 3 times and got worse. If Maggiet is not converting well, which she isn't based on her labs and symptoms, NDT won't help because it is still mostly t4.

  • Faith

    NDT is actually high in T3 not T4

    i agree that if someone is not converting t4 into t3 that the t4 causes a toxic system in the body just as reverse t3 can

    and yes for some people NDT flares the Hashis but for many NDT makes a massive difference in their lives

    Some patients are so severely chemically allergic that they cannot tolerate thyroxine or t3

    my husband and our daughter being prime examples

  • Here is an example..Armour Thyroid, 1grain contains..38mcgs t4 and 9 mcg t3. This is pretty similar to all ndt. Too much t4. Look it up for yourself.

    I don't know what kind of fillers could be causing a severe allergic reaction in the t3. There are many brands available. If they found something that works for them, then that's great.

  • They have tried several brands of T3 but mostly only rubbish mercury pharma stuff is available in the UK

    most T3 contains methylated spirit and anyone who is chemically allergic simply cannot tolerate it

    obviously the conversion problems need to be discovered before embarking on levo or NDT sadly far too few NHS labs will even test for t3 even on those patients who are on t3 only

    also low ferritin, folate,b12, d3,need sorting out too since they can be an integral part of the conversion process

  • New paper:

    Surgeon. 2014 Dec 18. pii: S1479-666X(14)00144-9. doi: 10.1016/j.surge.2014.11.003. [Epub ahead of print]

    Screening for thyroid dysfunction and diabetes in patients with carpal tunnel syndrome.

    Vashishtha M1, Varghese B2, Mosley F2, Kadakia A2, de Jager W2.

    Author information

    1Department of Trauma and Orthopaedic Surgery, Bradford Royal Infirmary, Duckworth Lane, Bradford BD9 6RJ, United Kingdom. Electronic address:

    2Department of Trauma and Orthopaedic Surgery, Bradford Royal Infirmary, Duckworth Lane, Bradford BD9 6RJ, United Kingdom.



    Current literature demonstrates that patients with carpal tunnel syndrome (CTS) have a higher prevalence of hypothyroidism and diabetes. The British Society for Surgery of the Hand (BSSH) advises screening CTS patients for thyroid and glucose dysfunction before surgery. This study aimed to analyze the current departmental practice for patients listed for carpal tunnel decompression (CTD) with respect to preoperative assessment of diabetic and thyroid status.


    A retrospective review of all patients who underwent surgery for CTS under one team over a 3 year period (2009-2011) in a UK teaching hospital was performed. Patients' medical records and pathology results were reviewed.


    A total of 103 procedures were performed in 100 patients. Preoperative thyroid function was checked in 63/100 patients with an abnormal result in 3/63 patients. Two of these patients were subsequently diagnosed with hypothyroidism. Similarly blood glucose was checked in 67/100 patients. This resulted in the new diagnosis of three patients with diabetes.


    The results are consistent with the view that CTS is associated with thyroid dysfunction and diabetes and screening helps in diagnosing new cases of these conditions in this select group. The cost of diagnosing new cases of hypothyroidism and diabetes can be considered as money well spent.

    Copyright © 2014 Royal College of Surgeons of Edinburgh (Scottish charity number SC005317) and Royal College of Surgeons in Ireland. Published by Elsevier Ltd. All rights reserved.


    Carpal tunnel; Decompression; Diabetes; Glucose; Hypothyroidism; Median nerve

    PMID: 25533047

    Have to say, only 3 in 63 is surprisingly low. But maybe some were already diagnosed hypothyroid, and others were not diagnosed because TSH was in range?

  • only just seen this as I skimmed through 90+ replies Phew!

    very interesting to see this link between CTS and Diabetes.

    A recent blood test report showed that I have a plasma glucose level of 8.3 mmol/L to which my Doctor has added the note 'borderline'! However the normal range had been removed .

    Looking up the normal range to see how much outside the result was I was surprised to see the association made between high blood sugar levels , Diabetes and CTS ...According to a fasting level of anything over 7mmol?L is an indication of Diabetes!.....borderline my Aunt Fanny!

    I have suffered with CTS for a little over a year now and my Doctor sent me to the Hospital for Nerve conduction testing which I could have told him would be a waste of time was.

    Considering the fact that numerous members of my family have died from Diabetes and my history of hyperglycemia, sweating ,shaking and anxiety attacks , fatty Liver and high ALT I'm surprised he didn't think to mention the possible link of CTS to high blood sugar .

    I would recommend that anyone suffering with CTS, with no diagnosis, get a fasting blood sugar test done to rule out high plasma glucose levels and pre Diabetes as a possible contributory factory to CTS .

    What say you ?

  • Thank you that Rod. I've also found evidence of a proportion of nerve conduction tests show a false negative. Its the usual case of never mind the symptoms what does the machine say?! Happy Christmas x

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