Well, I had my first appointment with the endo today.... and the conclusion he came to was...... (wait for it)

Chronic fatigue syndrome!

I laid out all my symptoms and test results, but he took one look at my thyroid results from Blue Horizon, and said they were 'normal, so that's good'. He didn't really say anything about the saliva test and cortisol/dhea, only that they'd test the cortisol themselves as it would be more accurate, and totally ignored the DHEA being low. Don't know why.

Now I'm starting to question if I'm in fact going mad, and maybe I do have Chronic Fatigue Syndrome? He said there are clinics in London that would give me Thyroxine for my thyroid, but only - basically - because they are out to make money. He said there'd be no further testing on the thyroid at all as it was normal. He also totally latched onto me having anxiety all my life, and also having had depression in the past. I said, in no uncertain terms, that I sometimes feel depressed because I'm tired (fed up, basically not being able to do anything!), NOT tired because I'm depressed!

Treatment for "CFS" goes like this:

1. Pacing exercise therapy

2. Therapy to talk things through, and help me manage/cope better mentally

3. Anti-depressants

He also said that I could have an MRI scan to rule out anything sinister, although he doesn't think anything odd is going on. I said I'll have it anyway. Might as well get what's on offer!! He said that with a combination these 3 things above, many people can feel a 30% or so improvement with symptoms.

What do I do now? Accept that it's CFS and be done with it? Or should I just pretend I never went this afternoon....

My blood results were:

ENDOCRINOLOGY

THYROID PROFILE 2

TOTAL THYROXINE(T4) 96 nmol/L 59 - 154

THYROID STIMULATING HORMONE 2.83 mIU/L 0.27 - 4.2

FREE THYROXINE 14.7 pmol/l 12.0 - 22.0

FREE T3 4.0 pmol/L 3.1 - 6.8

IMMUNOLOGY

THYROID ANTIBODIES

Thyroglobulin Antibody 10.0 IU/mL 0-115(Negative)

Method used for Anti-Tg: Roche Modular

Thyroid Peroxidase Antibodies 13.0 IU/mL 0 - 34

Method used for Anti-TPO: Roche Modular

Saliva adrenal test:

i824.photobucket.com/albums...

75 Replies

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  • Oh good grief! Another one!!

    Well you could pretend you never went and try some medication yourself. A t4 & T3 that low could make you feel very unwell. Why settle for a 30% improvement when you could have 100%? I did.

    If you took thyroid hormone and didn't need it, it would make you hyper. I have simply improved from day 1 of treatment, so that proves to me I needed it.

  • I feel like I've reached the end of the road, and I have nowhere else to go! It's just horrendous that there must be 100's of people walking around (or not, as the case may be) thinking they have chronic fatigue, when they simply don't. Just awful. Don't know what to do. Just so disappointed really :(

    They told you, you had CFS didn't they? Or did they say nothing was wrong at all?

  • The GP kept trying to get me to go to the CFS clinic but I refused. The endonob thinks there is nothing wrong with me! They were all wrong!

  • 'Endonob' - ! :-) :-)

  • Seems appropriate! ;-)

  • You do have somewhere to go though. You have all the advice and support here, and you can do it yourself. I know its a big step, but take it one thing at a time.

  • I'm with Harry. A trial of hormone replacement may resolve your symptoms and prove that you are hypothyroid and in range or won't help and you need to look elsewhere for a diagnosis.

  • Exactly! Why not try the easiest and cheapest and safest thing first?? Utter madness!

  • These one size fits all TSH & B12 ranges are crippling people because doctors won't think outside the range. Trials of T4 could sort this out fairly quickly and if the cause is non-thyroidal can be stopped without causing long or short term damage, unlike statins and antidepressants and drugs to mitigate side effects from other drugs. It's so stupid.

  • And expensive! No wonder the NHS is skint :x

  • Yep - how much does it cost to give somebody an MRI scan exactly?!

  • Hundreds! :-(

  • I'll be damned if I'm going back on antidepressants again, esp as I've read this can be extremely detrimental to the adrenal glands!

  • I didn't know that, Sip. I've taken ADs on and off most of my life but stopped taking them in November when I started taking T3 in combi with T4. I put all my iimprovements down to correcting vit and min deficiencies and T3. Didn't realise stopping Sertraline may have helped too.

  • I wish I could remember where I read this, but yes - I do remember them being pretty bad for adrenals. I'm going to have to try and find it now lol

  • I'd appreciate a link if you do find it. I'm bipolar with low mood depression mostly and I think the T3 is cutting it for me but I will have to resume Sertraline if a hyper episode comes on. I actually stopped Sertraline at the same time I stopped my thyroid meds as part of my detox when I was at my lowest and most desperate in November.

  • I can't for the life of me find it, but I'll continue searching for it!

  • Could this be what your looking for . . ncbi.nlm.nih.gov/pubmed/957...

    Relationship between psychotropic drugs and thyroid function: a review

    Abstract

    Some widely used psychoactive drugs, such as tricyclic antidepressants and antipsychotic phenothiazines exhibit iatrogenic effects on the thyroid. These side effects may arise from interactions at different steps of thyroid hormone biosynthesis. These drugs can induce a change in iodine capture by thyroid cells or can complex iodine, making it unavailable for thyroid hormone synthesis and thus decreasing thyroid hormone blood levels; they can also inhibit thyroid peroxidase activity and thus T3 and T4 synthesis or enhance deiodination of T4 to T3 or to Rt3 by stimulation of deiodinase activity. Moreover, tricyclic antidepressants interfere with the hypothalamic-pituitary-thyroid axis via the noradrenergic or serotonergic systems and might therefore decrease T4 or T3 blood levels, respectively. . . . .

  • Thanks, Flatfeet. Very interesting :)

  • Hi Clutter, I meant to ask you whether as well as starting on the T3, you stopped all anti-depressants? If so, did you stop immediately or gradually?

  • CC, I stopped the Sertraline dead. It's not advised because there is a risk of serious withdrawal symptoms and I do know of someone who has had an appalling time with withdrawal. The sensible and correct way is to reduce dose by 50mcg increments and taper off over a period of months. At the time I felt so ill I didn't much care what happened and I was lucky not to have caused myself more grief.

  • Thank you Clutter. I'm on fluoxetone now, been on various ones over the years, but learnt that fluoxetone in particular has adverse effect on thyroid. Was hoping when I start T3, could stop immediately, if you had successfully, but will gradually stop fluoxetone to be on the safe side.

  • Have a hug sip1. I reached the end of the road many times on my journey, but I eventually learned they are just bends in that road that you can't quite see round!

    After five years of being very unwell, I invested so much energy in my first endo appointment that I was devastated when he told me before I had even sat down that he could see that there was nothing hormonally wrong with me. He then contradicted himself by saying he thought I was diabetic and then, when tests proved I wasn't, he discharged me saying I had CFS.

    I was quite lucky I suppose in that I was able to use my subsequent private tests (from Genova) as a lever to get back in. I sent them to this endonob (I believe this is the word we use now) and said, they say I'm hypothyroid, what are you going to do about it?

    That got me back in to see " another (sic) thyroid expert" and although it took me another four years, and the diagnosis hasn't changed, at least I am now well on levo.

    What did help me, along the way, was sorting out vitamin B12 and folate, vitamin D and ferritin. Once they were optimal, I could at least function.

    All I can say is, don't give up. Take a few days, cry, rant, whatever, and then regroup and move on. You know you are not well. Your results say you are not well. We believe you!

  • Thank you, thank you. What would we do without this group? I honestly don't know. And yes, I believe endonob is the new word :) It certainly is now anyway!

  • Did you ever consider self-medicating?

  • Who? Me? Long, long story, but I’m well on levo now. Just need a little bit more than my GP is prepared to prescribe …

  • If you self medicate can use NDT which can sometimes improve benefits and can increase as you see fit, as long as not to much too soon.

  • If it's me, then yes I have considered it - and will be doing as soon as my tablets arrive!! :)

  • Cool!

  • What happens if the thyroid isn't treated?? If I were to accept this 'Chronic Fatigue' diagnosis, and did nothing to treat my conked out thyroid, what are the long term implications of that? Are they bad? I just feel like crying to be honest, I feel like I've been let down by the NHS - and it hasn't been a quick let down either, it's taken a good number of years to get to this nowhere nothingness!!!

  • The implications of untreated hypothyroid are serious, heart problems for example. And ultimately it can kill, but after too many years of horrible health issues and suffering. I hear you with the NHS, I work for them!!

  • You have just summed it up for me (((((((((hugs)))))))))) xxx

  • The one thing that did make my chuckle inwardly, was the fact that he thought I'd been the Geneva in Italy to get my thyroid bloods done. Nope, lol GENOVA!

  • It makes me chuckle to think of him thinking of Geneva being in Italy (rather than Switzerland). :)

    (Even if that was a tiny silly mistake by you, sip1, I am still chuckling at the endo. The alternative of Genoa ---- surely he couldn't be that silly, could he? :-) )

    Rod

  • No, twas not me. He did that all by himself lol. But I do know that, even though my brain fog is pretty hideous at times, I definitely don't remember going anywhere abroad to have my bloods taken! ;)

  • This is from Thyroiduk.org.

    thyroiduk.org.uk/tuk/testin...

    Once upon a time, before the blood tests were introduced for the thyroid gland, people were diagnosed according to clinical symptoms, given natural dessicated thyroid (even a trial) to see if they responded.

  • I'm so sorry. {{gentle hug}}. Antidepressants indeed--and talking therapy. Seriously? Way to make you feel like it must be all in your head. Sometimes I despair that we're ever going to get the message across that feeling poorly all the time with bottom of range TFTs doesn't mean CFS.

    My blood results are virtually identical to yours and I feel pretty grim most of the time. My OH is officially hypothyroid with Hashimoto's so it's not as though there isn't medication around for me to experiment with. I haven't yet though as OH, despite having been through the wonderful process of trying to get a diagnosis with results that are only just out of range, gets nervous when I consider it (she's an ITU nurse, so although she knows most consultants are idiots, I guess it's still a little ingrained that you shouldn't mess with meds unnecessarily. Her endo is definitely an Endonob, but he did at least prescribe T3 (very reluctantly!))

    But I may have to try my GP again soon as my last set of TFTs (private Blue Horizon ones) showed things were getting worse rather than better and I'm struggling to do my day job, which involves a huge amount of travelling and lots of pressure.

    I just get told by my GP to lose weight and exercise more. I'd love to. Unfortunately, if I walk very far I'm virtually crippled the next day - everything hurts so much! And despite reducing calories to almost daft levels, hardly anything comes off and eventually I give up--until the next time I pluck up the courage to try again. Of course, I just feel judgement all around, that I must be a complete pig and lazy to boot but it's not true. Doesn't look like it's not true though...

    Honestly, you're so not alone in how you feel. Doesn't help much, I know - but none of this is in your head. Something is going on here and it definitely has something to do with thyroid function.

    Maybe eventually our daft health professionals will figure this out but I'm not holding my breath. I just can't help wondering how many antidepressant prescriptions, how many obesity related problems, headaches, "arthritis", and high blood pressure problems could be avoided if someone realised the whole damn lot might be caused by a wonky thyroid. The cost of T3 (even our expensive T3) is tiddly compared to the sums spent on all of those problems.

  • Hi LilyMay, have you done the saliva test for adrenals? The pain , especially arms, went when I began to sort out my adrenals with Dr P's help. Only wish I could find decent T4 medication - or a bit of T3 to go with it. Very undecided as to what to do about Thyroid medication at the moment. I understand you should get your adrenals sorted before you start Thyroid treatment. Janet.

  • Oh I feel for you hon. Sending you a great big hug. They make you doubt yourself and make you feel like you are going crazy.

    My gp was trying to pin CFS on me too. As someone pointed out to me at the time...isn't it great that they diagnose you with CFS without there being any specific tests for it? It's the bucket diagnosis for "you're annoying me/you're a hypocondriac....here's a diagnosis...now go away".

    Your FT4 does not look great and neither does your FT3. Your "normal" tsh isn't normal. And you know what? You have symptoms, that should be enough for them! Instead they just look at the numbers, glance at the ranges and declare your thyroid healthy.

    Have you thought of seeing someone privately? There's a great homeopath that sheenah and others swear by. Or you could go it alone as it has already been suggested.

    Hang in there...we're all here to support/listen and help.

  • I think it was Dr. Sarah Myhill who said "It's not in your head, it's in your mitochondria".

  • If i was in your shoes i would simply self treat because your results are indeed showing early hypo in my book

  • I think I know what I'm going to do - the only thing I'm really not sure about is whether my low DHEA is going to be a problem. The cortisol has improved, and at least in the normal range now. I think this is the one stumbling block at this point!

  • Feeling your frustration and pain. Been in the same situation as has my sister and again been offered antidepressants. Lazy doctoring, lacking in empathy, lacking in professionalism, lacking in a holistic approach when making a diagnosis but so easy to write a script and line their pockets at the same time. medscape.com/viewarticle/77... I have no doubt that there are tons of articles out there similar to this one. But the fact is these days gps at the moment hold the purse strings ,and give no rationale as to how they can willy nilly offer one explanation to give one expensive treatment rather than starting with the most basic... Do what you can for yourself.

  • Thanks Gookygal :)

  • Feeling much more positive this morning about it all, and quite empowered that I'm finally going to take matters into my own hands, and self medicate. In fact, pointless, stressful doctors/endonob visits is one less thing to worry about, which can only be a bonus :)

    I've got all the books/info I need, I've written important notes of do's and don'ts, goods and bads, rights and wrongs, ifs and buts lol. I know where to order from, and I feel I have done everything I can for my adrenals over the past 6 months to be ready.

    Thank you to everybody who has encouraged me - I'm not sure I would have reached this point had I not have found this forum. Thank you all xx

  • I feel for you too, sip1. I've had "chronic fatigue" since the 1990s and was diagnosed with ME/CFS in 1999. Back then, I was simply glad to get some kind of diagnosis as I'd spent several years with doctors telling me there was nothing wrong with me. I had no idea about thyroid issues at the time (don't think they even tested my thyroid).

    Then, when horrendous pain started, they diagnosed me with fibromyalgia too - again, no tests apart from the 18 tender point test. I've had to keep nagging for blood tests, x-rays, etc. Oh, and then they decided I had polymyalgia rheumatica .. but then changed their minds again.

    It's only since thyroid nodules were discovered more or less by accident that I started wondering if there was a thyroid connection and doing some research .. which led me to this wonderful and informative place!

    I've been to see Dr P privately (try his book "Your Thyroid and How to Keep it Healthy" - it's really interesting), and I'm now taking NutriAdrenal Extra (Dr P thinks my adrenal function is very sluggish) and will be introducing NutriThyroid soon, with the possibility of NDT later if the NT doesn't help.

    I think it really is a case of having to go it alone with these problems - the NHS is useless with it!. Good luck to you, sip1. Take control of your own health. It's a long job but I see from people like HarryE above that there really *is* hope for us to help ourselves feel so much better.

  • I saw a lady on TV who was struggling to cope with a young family as she had Chronic Fatigue Syndrome and ME - she was having such a hard time, and it made me so mad that she was clearly getting no treatment or help, or further investigation. I was practically shouting at the TV that she needed her thyroid checked out properly.

    I always get asked if I am feeling depressed at my endo/GP appointments. I've got a strong history of depression, so absolutely live in dread of being labelled again. I do get very low periods, but only because I get so frustrated at being chronically ill and having to fight the system to get anywhere, and because I get tired and grumpy. It doesn't help that I usually end up in tears at my appointments. My husband now comes with me, and makes it very clear that my tears are due to frustration and not "depression", I know I am not depressed, but doctors do like this label.

    Good luck with your new route to wellness, I admire those of you who do this.

  • Yes - he definitely picked up on me having anxiety too, and having had depression in the past. He seemed to focus on that, more then my CURRENT symptoms! In fact, I'm really quite angry today because all the symptoms I wrote down and gave to him, were practically SCREAMING thyroid, but he just totally dismissed it because the thyroid panel was 'normal'. It's so frustrating! I didn't bother to try and convince him other wise - what's the point? When he told me I had CFS, I just wanted him to get on with it so I could leave and go home.

  • I am very careful never to mention anxiety, depression or anything remotely connected when listing my symptoms. I guess I should count my blessings that I clearly had Hashimoto's - shame that the doctors then dismiss all the symptoms of hypothyroidism and decide it must be something else.

    We go to our appointments with just a smidgen of hope sometimes, but that horrible feeling when you leave, knowing that you are just a "number" is crushing.

    Maybe I will make up some completely outlandish "symptoms" one day and see if they get ignored too.

  • I've been on ADs on and off for years for bipolar and asked for a referral to the mental health team as I was very low after my hemithyroidectomy and thyCa diagnosis. GP said it was natural to be anxious and low after the diagnosis and being ill for so long so just upped the ADs. You really can't win :-D

    Endos only wanted to know if I was ever prescribed Lithium, which I had been, as it's known to be a trigger for thyroid disease.

  • I can't believe that these people get paid the salaries that they get for being so useless! Any other profession and they would be disbarred, or whatever, from practising - yet these endonobs just keep talking b*ll*cks till the cows come home and there's nothing we can do about them!

  • Sip, I have already seen that you are starting NDT . It's taken about two months for me to feel a real change...I am a fm/cfs waste-bin diagnostee too. I'd be interested to know your full symptoms.

  • Sorry, only just seen this! My symptoms are:

    Tiredness – from approx. 2.30 pm onwards extreme tiredness. I have to sleep for approx. 30 minutes (which helps a little, unless I sleep longer and then usually feel worse!) or by 5pm I’m consumed by fatigue and cannot function. Tiredness debilitating 4-5 days before period.

    My hair has become extremely thin (fine all over, no bald patches), esp at the sides and tying my hair back is difficult due to seeing my scalp through it.

    Occasional constipation

    Hands and feet are almost always cold. I’m usually cold generally when the rest of my family are not!

    Bad memory – forgetfulness. Struggle to string sentences together sometimes due to never remembering the correct words!

    Constant spots, especially around my chin!

    Anxiety

    Weight gain – 18lb in the past year!

    Dry eyes

    Pale skin

    Dizziness from lying/sitting to standing

    Palpitations

    Resting heart rate 47 – 55 bpm

    Basal body temp (currently ie this month) approx. 36.4 pre ovulation, 36.6 post ovulation

    Short periods, usually light lasting 2-3 days. 4-5 days of premenstrual spotting

  • Well, all those symptoms do seem to come under cfs/me/fm et all, but that sure paints a dot to dot hypo picture to me. In the forums I've been on, and through research, one of the things that distinguishes FM is chronic pain in varying degrees. FM can also be characterized by majority fatigue or majority pain or both. I was diagnosed fibro way before hypo and the things that made me revisit hypo was low body temp. low pulse, thinning eyebrows and the hair coming off the bottom of my legs. Oh, and about 18 llb weight gain too. I have the same symptoms now as when I started with FM diagnoses but my thyroid measurements were normal then. I am going to splash out on a full thyroid panel soonish to ascertain if I have Hashi's or just low thyroid output. I am fairly new here, and like the rest of us I can barely believe I have this thing. I could barely believe the Fm but keep having remind myself hating won't make it go away. I am self doseing and titrating and hoping for the best. Even those that are being monitored seem to have to keep experimenting as Humanbean said. A lifelong art! And I sure don't want to wait three months in between each GP visit for him to titrate....I could be sick for 2 and half months each time. If I had loads of money to chuck at it I'd be off to see a private specialist and monitored every month. Yes, it does yer head in esp when we take into consideration all the hormonal permutations. That said, my NDT definitely has changed energy from barely being to put a spurt in my limbs to moving more quickly even though there is a way to go with the other symptoms.

  • The palps might be because you are bradycardic and the heart has to give a harder thud to get the blood out. If you haven't already, get your heart rate checked. I took a while to get my heart rate up a little bit but it is enough to stop palps....so far. They palps and odd trills are creepy.. Very common in low heart beat. Lastly, stressing like mad will make everything worse...and very lastly, if you can get it, get a full hormone check re your scant and spotting periods.

  • I've had palpitations for years on and off. It's worse just before a period too. Interesting though that you say it might be because it's just working harder. And I'm fairly sure I'm worrying about it, so making it worse! My doctor did listen to my heart, and asked if I suffered with palpitations - so he's aware of it, but probably wouldn't associate it with thyroid because it's 'normal'. When I saw the endo last week, they also noticed palpitations. Didn't seem concerned about them though, but again - they wouldn't associate it with thyroid. :-/

  • Thank you so much for your lengthy reply. Have you read the article on STTM about Fibro? stopthethyroidmadness.com/f... Might be worth a read if not :)

    I think it's frustrating at the moment because I can't get started on the NDT as I'm waiting for it to arrive. So it's still unknown how/if/when it's going to work. Just so eager to get going! I don't know if all my symptoms simply come down to the thyroid alone, or if there are other issues so I guess I'll find out soon enough.

    I wonder if I should ask my doc to check my other hormones? I think it's the least they can do seeing as I've done all the thyroid tests!!

    Can I ask you what your fibro symptoms are? I'm fairly sure I don't have fibro, as I don't really have pain. Although having said that - I've had on-going pain in my ribs for several months! Although my doctor seems to think that's caused by a dog pull. It's not going though.....

  • It was the rib-cage pain that made me have a vit D test (meanwhile GP sent me for x-ray) it was painful to breathe, so taking short breaths...

    Have you had a vit D test? £25 here if GP won't - vitamindtest.org.uk/

    (NHS lab)

    I strongly suggest you sort this if low before considering trying NDT (& other vital minerals like iron B12 etc) as NDT won't work. J x

  • Thanks for the link. My GP ordered vit D test, but lab refused it.

  • STTM is great. I will check the thyroid article in a mo...thanks.

    Too many symptoms to list here but some of the main ones include brain fog,musculoskeletal pain including lots of trigger points, neck and back pain and tested positive for all the fibro pain pressure points. Fatigue, varying but sometimes crash to the point of complete leg lock...like walking and suddenly stop and need transport. That hasn't happened for a while. Very slow and stiff reflexes. Lots of numbness and pain in toes and fingers..varies. Flare ups that include a pain I can barely describe, but sort of like my whole body tissue has gone stiff and painful and with that bowel and bladder really play up plus weird sleep patterns and buzzing although feeling lousy. Lots of burning in legs and feet. It's been quite a journey and even though I'm still not sure if I have FM triggered by thyroid or vice versa, there is a lot of research and testimonial out there that FM is commonly triggered by hypothyroidism. As I said before, II do know there is a difference since taking thyroid hormone which is why I suspect I fall into the hypo all along category. There is so much that comes into play. Plus, if it is Hashi's then I need to step into autoimmunity land and consider further how to manage my lifestyle. Dr John Lowe is a major pioneer of treating FM with thyroid hormone...check out his articles, loads on the net. But there are others that know loads specifically abut thyroid issues too. I am so glad I found the place. Lots of ready and informed help. As for the NDT..well, it's trial and error, like any other hormone replacement. I' me neither feeling too hypo or hyper at the moment and starting to slowly raise again. Make sure you keep asking for help and reading as you go through the dosing journey. I am still waiting to see if NDT is right for me. If not I'll be asking my doc for a trial of t4/t3, and I still need to find out if I am hashi's...and so it goes on. The thing that alerted to me to thyroid before obvious hypo symptoms as afore stated, was delving deeper into symptoms and finding my FM symptoms right across hypothyroid forums. (which always sat in the back of my mind since reading Lowe's book on Lowe's book) My stroy goes form hero to zero when I was struck with vertigo one night and it was all down hill from there. I was extremely physical running my own business making furniture and sculpture and living on stress, caffeine and fags!! Anyway, a year out of work hardly being able to walk or think or even eat properly, I'm back working, and the thyroid hormone is helping even more.

  • I'm really getting into a flap about this whole thing now. Just been told on Facebook that it sounds like CFS or Fibro, rather than thyroid. (This was on a thyroid group). Now I'm starting to doubt myself!! This particular lady said my results looked fine, were within range and I technically didn't have a problem. She also said that 'TSH should be below 1 and T4 and T3 should be in the top quarter of the range IF you are on medication of Levothyroxine'. I mentioned that some folk on here have had similar ranges to me - but she said 'they may be the same levels as you NOW that they are on medication? and out of range is out of range, they will have had high TSH which is above range or low T4/T3 which has gone out of range below or they would not have got a diagnosis'.

    I'm confused - think I need to go sleep!!! This whole thyroid thing is just too much sometimes!

  • I know it is scary, but don't start to doubt yourself. Do a trial of thyroid meds. Get all the advice you need from here. And if things don't work out you can always stop, cut down in dose, increase in dose, or switch to something else or a different brand. You aren't doomed for ever to continue an experiment if it doesn't work. You just move on and try something else.

  • Thanks humanbean :) My thyroid isn't exactly getting better by itself, so I'm going to have to do something. I found out this morning - after phoning the doctors, that my TSH was 1.63 in 2005 - now 2.83. I know back in 2005 I made the appointment because I was feeling tired. 9 years later, I'm even more tired and still no closer to getting a diagnosis!!

  • Ah, if America is thinking about bringing top TSH range down to 2...then that makes...tada..

  • Yes indeed!!!!! I wonder if this will have an impact on the ranges over here??

  • I just read that in the US the tsh range has gone back up to 5 - ?

  • Speaking to several Americans with UAT they always said it was 5 where they were located (1 in Alaska where they ALL supplement D3) - as far as I can remember the reduction was recommended by an Endo site - going looksies.......

  • I can't find it I'm afraid, but someone just posted (today? yesterday?) that in June 2014 the US ranges were changed back to 5, so I am passing on second- or third-hand info, but can't find anything definitive to back it up.

    Of course if you're not tied to the nhs purse strings you may have a little more flexibility, so in the US there is not a party line to toe as such. I think (but do not know) that people whose tsh is rising may have a better stab at a trial of meds in the US than we do in the UK, and I doubt that will change much with a change in the range.

  • Well found a reference of 3 mentioned here...

    ajcp.ascpjournals.org/conte...

    I can't make my mind up whether it's because of free prescriptions and/or not admitting to/dealing with an epidemic due to no resources - but something is stopping proper treatment of Thyroid disease - that's for sure!

  • Agreed, Jane. It always used to be around 5. I really do not believe the over-optimisitc view that the USA treats more readily. Some doctors might do, but not all.

    However we cannot easily compare tests over long periods of time. A number of years ago some TSH tests were shown to be affected by antibodies to TSH itself (macro-TSH) giving artificially high results. At least some were improved to avoid that. That would have the overall effect of reducing the top of range.

    Rod

  • Sip1 - Please don't get in a flap, CFS can be a delicate area for some, it is of course a very real problem in itself with symptoms overlapping Hypothyroid ones.

    That said, we are on a Thyroid forum so we tend to think that optimising Thyroid function can alleviate CFS symptoms - and it CAN in a lot of cases (ones I've seen anyway, and in my own case). And I am of the same mind that I'd rather try to sort it than have antidepressants, CBT or 'pacing' & remain ILL.

    I'd been to the GP years ago with fatigue, cold, numbness - offered ADs, insomnia, tremor, palps - offered ADs/BBs, joint/muscle pain - offered ADs (I refused as I wasn't depressed). After they discovered a 'dodgy' nodule & I'd just had my PT op THEN CFS was suggested GP said "it's not a bad diagnosis to have" ?? but she was puzzled as I should have IBS. I was also puzzled to have something else right after half my thyroid out (TSH 2.5 then 5.2).

    3 years & a lot of reading later - I'd tried NutriT - OK but not much difference, tested Vit D & supplemented - BIG difference after 3 months - pain free :) ferritin, folate seem ok, looked at B12 for numbness, wobbly - but I was too keen & supplemented a bit before testing - so still unsure if that's low. Then, after I thought I'd checked the basics I bought some NDT, couldn't face another cold winter - bit better but not quite there yet! - it's taken me a while to become ill so will take a while to get well. Jane :D

    (TUK cannot condone self-treating as the first port of call should be your GP, any comments do not replace your relationship with your doctor and it would be much better to be monitored).

    Check if NutriT helps/suits you (it's also pig extract)

    Check your iron - spots round chin classic & low ferritin/biotin can cause hairloss.

    Check B12 & folate (active B12 test best) supplement with B complex

    Check Vitamin D (controls Calcium) & magnesium (epsom baths), selenium (brazil nuts)

    Check celiac or gluten intollerance

    avoid things that poison your Thyroid - too much iodine, fluoride, teflon, soya etc. - every little helps/adds up!

  • This is what I have been told to that I have cfs. I have got an underactive thyroid but that's in normal range. I went on a 6 week course for cfs just to keep doctors happy and tried antidepressants,guess what it didn't help in the slightest. I'm now back seeing an endo privately and shortly having blood test and urine tests. Everyday is a struggle.

  • I'm curious as to what the 6 week CFS course involves...

    I looked at a friend's booklet about pacing and a DVD - and I must admit I felt terrible on her behalf - I couldn't accept a diagnosis of no hope or improvement ...

    anyway jp have you posted your 'normal' blood tests to see if anyone can help, good luck with the Endo and I hope the struggle eases for you soon sweetie Jane :D

  • Had a copy of the letter the endo sent to my doctor today. It doesn't mention the thyroid very much at all, all it says about that is : 'multiple unexplained symptoms. Slightly low salivary cortisol on a private test, single slightly low t3 but normal t3/t4 ratio and t4 and tsh levels on repeat tests t3 levels returned to normal. Impression: I think she has probably got one of the chronic fatigue type syndromes'.

    Presumably then, CFS will go on my records??

  • Parathyroid.com

    Get your calcium and parathyroid hormone checked.

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