So for years I thought extreme fatigue & exhaustion was just my HypoT.....want to tell you guys in case its a possibility for you too!!!!

Hi all, I'm now almost 42, & have been diagnosed as HypoT since I was about 23. For years I have been struggling with extreme exhaustion, went private, tried Armour (which worked much better) even got it prescribed on the NHS (for a time, till I moved!!!) But never felt right......every day is a struggle, etc etc (I dont have to explain to you guys, cos I know u all 'get it'!!!) Anyway, in my quest for trying to get Armour prescribed to me on the NHS again, I was sent off to see a different Endo, at a different hospital. Same old story, blood tests look fine, cant see any reason for you still feeling like you do...however, she did say something different that not one other dr had said to me before....I want your GP to refer you for a sleep study!

Well, that was at the end of January.....2 sleep study's & a daytime nap study later & I have been diagnosed with Idiopathic Hypersomnia. (Which basically means excessive sleepiness of no known cause) Its related to Narcolepsy, but without the Cataplexy, & differently from Narcoleptics, where after they have a sleeping epidsode they feel refreshed, however, people with IH still feel exhausted & NEVER EVER feel refreshed when they wake......funnily enough, sometimes they treat people with IH with thyroxine (God knows why cos its never done anything for me!!! lol)

So to cut a long story short, maybe its something that if you;ve tried every angle, & you're still feeling exhausted & cant find a reason....maybe its worth asking for a study???? xxxxxxxx

26 Replies

  • Pardon my ignorance, but in what way is 'excessive sleepiness of no known cause' a diagnosis? It sounds suspiciously to me like yet another description of symptoms.

    Given a choice, I would choose proper thyroid treatment rather than a new description of my symptoms.

    Have you ever tried T3? In your situation I would not accept this diagnosis.

    My GP tried to so the same to me, implying that I had half a dozen incurable conditions, Strangely, as my thyroid medication is optimised, the incurable conditions are gradually disappearing one by one. I DO have an incurable condition, I have no thyroid, but the GP preferred to ration my thyroid replacement and tell me I had a chronic tiredness condition, familial high cholesterol, heart problems due to my age, ANYTHING rather than address the glaringly obvious problem.

    I suspect that almost every undertreated hypothyroid patient would qualify for a diagnosis of Idiopathic Hypersomnia. As they would Fibromyalgia, and Chronic Fatigue. But what we all really want is to feel better, surely.

    Do you have your latest actual blood tests results, with the ranges? If you do, might I suggest that you post them on here, I have been looking back on your activity and I cannot find whether you have ever done this. So very many on here have been told they have 'normal' thyroid levels or that their treatment is adequate but the actual results say something very different.

    You have been a member of this forum for over three years and still poorly! It is a scandal that you have not get any better after such a long time on so-called treatment.

    Perhaps there is something that can be suggested, if you have those results.

    Marie XX

  • Marram is right... this is not an illness it's a symptom. Take your temperature.. if you're cold then you're still hypo and need a bit more medicine.. My Endo says TSH needs to be between 0.3 and 2.0 for a hypo person to feel well.. Personally I only feel good on around 0.5... otherwise I have pains in my legs, am tired all the time..There's no point in treating the fibromyalgia or CFS or any other description of the symptoms because the CAUSE is my hypothyroidism

    What a waste of NHS money again... they should just give you your armour back..

  • also Redditch, I have had the symptoms of IH since I was a child......& was tested for HypoT many many years before my bloods actually showed up that I was Hypo....& I know this because my previous Gp surgery allowed me access to the whole of my medical records because I wanted to go all the way through my records to see what info I could find pertaining to my hypothyroidism......I agree, it would be great to just have my Armour back, but....I didnt feel 'normal' on Armour either!

  • i was cold my whole life diagnosed hypo as an adult and now feel warm.. even my temperature is now what a normal human is.. I never got above 95/96 as a child.. now I'm 98.6 like everyone else. don't let their failure to diagnose you as a child let them fob you off with a made up disease.. your exhaustion is your thyroid.. more armour was clearly required... what's your temperature...? bet you £10 you're cold...

  • lol, I'm never cold....In fact, it was one of the symptoms I could never quite understand in the last few years!...I used to be, when I was ill with the Thyroid disease, but I havent felt cold in years. I sleep in a bedroom with the fan on, the heating turned off & a tog 6 poor partner (he's HypoT who does feel the cold, as they havent optimised his thyroid dose yet) snuggles up to me as his radiator!!!!, I'll be having hot sweats, whilst he is shivering!!!

  • You've missed the've had a hypo symptom since forever.. and you've let them convince you that it's not a hypo symptom. Your exhaustion is a hypo symptom, just like my coldness was.. If you get your medication right, it will go away

  • Redditch, I think ur missing the point....I was on Armour for 7 years & all my blood levels were at the optimum levels...I was far better than on LevoT, but I wasn't functioning like everyone else who is 'normal'! They havent just suddenly decided to give me a diagnosis to 'shut me up!' I've had to go through very strict testing in order to be diagnosed, not only did I have 2 overnight studies, I then had to have a nap study the following day, being told to sleep at 8.30 10.30 12.30 2.30 & was meant to be tested again at 4.30 but they had far more evidence than was needed to do the last one at head was wired up, I was in a controlled environment, & was strictly monitored.....there is a certain amount of time that i had to fall asleep within, every single time & they see whats happening to your brain & the type of sleep you are having in that you think that all these people that go through this testing & are diagnosed with IH & Narcolepsy are in fact all Hypothyroid patients & if they arent diagnosed as HypoT have been missed??? Do you honestly think that Guys Hospital (being one of the top sleep study centres in the world) dont think that Hypothyroidism is a cause for exhaustion & make sure that their patients are also tested for that??? you honestly think exhaustion is a symptom exclusively for people with HypoT??? Personally I think that would be a very narrow-minded view to take!

  • hey you believe what you want I'm not having a go.. they've given you exhaustion with no cause... and all I'm saying is that we know damn well what the cause is.. and bloods "normal" means nothing at all.. feeling on top form is the only measure that really works and you don't.. so I think.. you were undermedicated the whole time and a little more could have kicked it into touch...

  • Hey dumb ass, hypersomnia is a symptom. Idiopathic Hypersomnia is a disease.

  • Actually idiopathic hypersomnia is a neurological disorder, within the narcolepsy spectrum. It's called Idiopathic, because it's a primary illness, ie, any other cause has been ruled out previously.

  • I had a sleep study as well and discovered I had severe obstructive sleep apnoea (and I don't snore!), Not anything in relation to thyroidism, just thought I'd mention. It's helped with my excessive sleepiness some, so I guess not all of my woes can be blamed on my thyroid :).


  • Thats what I was originally tested for fact my partner who also is HypoT has severe Sleep Apnoea....its doesnt help with all of his exhaustion either, although it does help with some xxx

  • My gp asked me a lot of questions about sleepiness when levo wasn't helping me to see if I had sleep apnoea. My mum (who is hypo) has it and uses a CPAP machine which has improved her sleep and energy levels. It is well worth looking into if you have the symptoms, and since it can be exacerbated by being overweight and having a narrowed throat, it seems like people who are hypo might be more prone to it - ? (Though fyi that is just me musing and not based on any evidence!) My mum apparently has a congenitally narrow throat (or trachea or something, I forget the details) but she also has a goitre, and it would make sense if inflammation in the neck/throat area made you more susceptible...

  • Thats what I was originally tested for with the first sleep study.....but the professor I first saw said he thought I had something much more longstanding than just Apnoea (Interestingly enough sleep Apnoea & HypoT often go together) Yes, typically, I have a predisposition to weight gain & not losing it, just like everyone else with HypoT (& how hard is that to lose, whether or not on replacement therapy) But also, its common in people with IH, because of the exhaustion.....I'm hoping now that they are medicating me for it, it may help with the weight issue, but Im not counting any chickens!!! I've had HypoT & had my lab work at optimum for long enough to know that medicating doesnt help with the weight...I'll be blooming chuffed tho if it does.....interestingly enough, I've been taking the medication since thursday & my brain fog is definately clearing...I'll be interested to see what other symptoms I've always put down to my Thyroid dissapears over time too!

  • What sort of meds will they give you (sorry - I did read the thread but it is v long and maybe I missed it)?

  • It's a type of amphetamine called modafinal (think that's the correct spelling!!!) 100mg, then up to 200 then increasing up to 300 daily

  • Marie, I have been on treatment for over 19 years! I am currently on 125mcg of Levothyroxine & 20 mcg of Liothyronine. I am not ignorant about Thyroid disease, having been diagnosed since the age of 23. I have gone Private, tried Armour (Which made me feel somewhat better, although not 'normal') My gp has refused to prescribe Armour, without a specialist telling her to, since I moved to another surgery. I havent posted my lab work & ranges on here, because I know they are all fine, Tsh is suppressed, T4 & T3 at upper end of the Range.

    Idiopathic Hypersomnia as a diagnosis, isnt just a clinician saying, you're sleepy for no reason! lol Although maybe I made it sound like that! Its related to narolepsy whereby people collapse & have an attack of cataplexy & cannot awaken until the attack is over. When I say its of no known cause, that purely means they dont know what has caused the condition in the first place, much like many other diseases! They aren't just saying, oh yes, you are exhausted & we dont know why! lol!

    They monitor you very strictly, in a very controlled environment, under quite strict testing, & there are many things they check for in order to diagnose this condition. Its not a one size fits all diagnosis, much the same as Hypothyroidism isnt!!! xxx

  • Have you had the vaccination agains (swine)flu? Pandemix's vaccine was proven to have caused 100 children/young people to have contracted narcolepsia in Finland last year, and similar results from Sweden. UK authorites looked into it as well, but it was not really advertised for the public.

    My fatigue/exhaustion, sleep disturbances (among other things) is caused by lyme disease and its co-infection bartonella henselae, both of which also re-activated all dormant viruses in my body (EBV, CMV etc) - by treating those and taking supplements (including iodine) I have made progress. Many people have viruses, bacteria, funghi (like candida) and/or parasites that when undiagnosed/untreated cause many signs (like pain, fatigue - body telling the owner everything is not ok), symptoms and diseases. One can have several of those at the same time causing all sorts of health trouble incl thyroid dysfunction, hormonal imbalances, deficiencies etc etc

    Best wishes of finding all the root causes and dealing with them.

  • Hiya Hon, I have had The flu vaccine the past three years due to working as a carer, but never prior to that, & I've been having symptoms far far longer than that, although its definitely worth me looking into as it may have made it worse.....I did have treatment for Candida Holisticly years ago, which did help with many of my symptoms, but it was so hard to keep to such a restricted diet all the time....I still try to follow it as much as I can but also being on a limited income it can be quite hard! :( Best wishes to you too hon....its terrible the things we have to go through just to feel well!!! xxx

  • Hi

    If you didn't feel better on Armour (lots of people don't since it was reformulated in 2009) have you tried a different brand of natural like naturethroid or WP? These are hypoallergenic with minimal fillers. What sort of dose were you on and how was this monitored? If by the TSH then that's a waste of time. My endo says everyone needs a TSH of between 0.3 - 0.5 to feel well. Also what are your iron levels, cortisol levels, B12, Vit D etc all like? Also no amount or kind of thyroid will work unless you have the basics sorted. See here:

    All kinds of sleep issues can be a HypoT symptom but also a low cortisol symptom (causing low blood sugar which interferes with sleep). Have you had a saliva cortisol profile? .... See here:

    I very much doubt that there's anything else wrong other than a suboptimally treated thyroid situation.

    Just my tuppence worth!


  • Hi Rebecca, I havent had Armour since I Moved at the end of 2009.....I'd been on it for seven years before then....I was on 2 & half grains. I moved to a different surgery & was then under a different PCT. My new GP wouldn't take the responsibility of prescribing mean unlicensed medication, despite the fact I'd been prescribed it for 7 years. My TSH Levels was (& still are) suppressed at around 0.2-0.3 & my T4 & T3 levels are always between the mid to top of the GP is very good to be fair & keeping it at optimum levels. She has referred me to not one, but two different hospitals in my quest to get Armour on the NHS again & has been very very supportive. The last Endo, before discharging me, had Checked my Iron, Ferritin, B12, Vit D & Folates, as well as liver function & numerous other tests...The only thing that was of concern was my Liver Function which was a bit high, & my gp's referring me to a gastrologist to deal with that......Funnily enough, the Sleep Clinic at Guys also got my GP to check Folates, B12 & Vit D as well as my female hormones too.

    I can't purchase Armour again Privately as I'm a single parent & I just cant afford it.....but I also know that my exhaustion isnt quite the same as my other family members who are also HypoT (there are several).....I just thought I would mention it to you all on here, because I thought for years that all my symptoms were my Thyroid & couldnt possibly be anything else......Going from my own experience I know how easy it is to pigeon hole things down to one thing, instead of looking at other possibilities as well...

  • Hi Nicky

    I hear you, it sounds like a nightmare. I'm having issues with my GP - he's not supportive and I had a TT for graves and cancer. I do understand. Did you get copies of all those blood results? Reason i ask is an NHS 'normal' and optimal are not the same - eg. ferritin ranges go from 6 - 300 at my clinic but for optimal thyroid you need ferritin at 100 ish and serum iron, transferrin, and saturation % well up in the range. Ditto B12 - needs to be over range at around 1,000, and vit D not just normal but about 80ish I think. I've had a nightmare feeling well but since I sorted out adrenals, and iron etc I'm doing much better despite turning up 'normal' tests for all of these at the hospital. I hear a lot that since 2009 patients who formally did OK on Armour aren't doing so well. What about Thyroid-S from Thailand, it's a lot cheaper I believe?

    I wish you better,



  • I have to say, my Gp is great! She is very understanding, & Im sure that if she could, she would take the responsibility of prescribing the Armour. She gives me copies of all my tests when I ask her (receptionists can sometimes be a pain, but she's good) I have a print out somewhere from when I was seeing my private dr which highlighted for me where my optimum levels should be for Ferritin, B12, Folates & other stuff.....I do keep an eye on it, but with the brain fog I have a brain like a seive, so cant remember where my latest results are, but I know they were fine! lol Interestingly enough, my brain fog has been getting loads better since I've been being medicated for the IH since thursday.....its odd, but the only way I can describe it, is as if someones squidgy'd my windscreen inside my brain! lol Im just hoping it gets even better & sorts out a lot of my other symptoms!!!

    I cant afford anything juggling everything just to pay the bills, I got paid on friday & was still overdrawn....I totally get the nightmare us HypoT patients have with trying to be well....but I just wanted to let other people know that there may also be other answers to some of their the end of the day, dont we all just want to feel well????

    I wish you well too can sometimes feel like such a long & lonely road....& people never truly understand...thank you for your wishes hon :) xxx

  • Also forgot to say, the last endo also referred me for a short synacthen blood test to check my adrenals which was also normal..... xxx (funny thing was, I thought she was crap, just because she wouldnt prescribe me, now I'm relieved I saw her!!!) xxx

  • This is quite interesting. I have recently been to the doctor because of a thyroid goiter, with a cyst on top. However, I also went to the sleep clinic due to chronic lack of sleep and scheduled a sleep study. Based on my symptoms, the doctor suggested it is more likely narcolepsy (but technically it would be the same as you, since it is without cataplexy)...I am interested to see what the sleep study results reveal. I've had years worth of bad sleeping.

    What are you doing to control your symptoms/alertness?

  • Did u have the nap study the next day as well???? Where did u have ur study done????

    They started me off on a drug called modafinal at first, but that affects ur contraceptive pill, & because I also take it for my endometriosis as well as contraception, that was no good for me. They then put me on Ritalin, which works quite well at keeping me awake & alert & having more energy, but I am now trialling an antibiotic called clarithromycin which has been proven in studies at the Emory institute in the US to have very good results in people with a certain type of IH. That is really helping me!....I'm happy to give u any info I can or help if u wannaessage me on here or inbox me hon xxx

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