I have autoimmune thyroid disease initially presenting with hypothyroidism although I am constantly reassured that on 75mcg levothyroxine my thyroid is "euthyroid" and stable. I've been reporting ongoing fatigue issues for the last 7+ years and my GP has asked me to fill out an excessive sleepiness scale to rule out narcolepsy before my chronic fatigue clinic referral. Initially I was very happy that finally there may be something that can be done to improve my waking hours, but I'm wondering if I fill the sleep scale out honestly (I would score as mildly abnormal) I would have my driving licence revoked? I've lost my licence due to health problems and investigations in the past (fainting) and I'm really concerned about life being made any more difficult than it already is, as my fatigue will only be worsened without the car as the loss of autonomy will no doubt cause me to feel very depressed as I've experienced it before. I'm wise enough not to drive if I'm feeling very sleepy and only use my car for short journeys. I'm desperate for answers as to the cause of my chronic exhaustion as it interferes with every aspect of my life. I currently only work part time as the exhaustion impacts me terribly and I am also the primary caregiver for my two young kids. I'm eagero take on full time employment in September when both my kids are at school full-time but I'm really concerned about losing my driving licence and performing inadequately or ending up crying at work. I often avoid socialising because the exhaustion can make me quite depressive and teary.
Has anyone here on levothyroxine also received treatment for a sleep disorder?
Could it all be an inadequately managed thyroid? (I've had 2 GPs who both tell me it's not, and this one actually liaised with an endocrinologist for me).
I'll be having repeat blood tests done, but the last ones I have printed out are as follows:
I'm 31, have been diagnosed with thyroid disease for 7 years (the same length of time I've been complaining about chronic fatigue. I have a vegetarian diet and my weight is normal, BMI 20-21). My main issues are being excessively tired, aching muscles (particularly in my upper body), being wiped out for weeks after working or even doing mild exercise, and being very forgetful with a general feeling of being slow and feeling thick for want of a better word. Academically I was always bright, but now I struggle to find even simple words in a conversation.
Sorry that was very long! I wanted to paint a full picture.
Many thanks for reading,
E
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Purplebadgermoon
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If you are vegetarian you could be low on iron and B12. That would make you very tired. Have they been tested, along with vit D and folate? If not, that should be your next step.
Why was your dose reduced to 75 mcg? Your FT3 wasn't very high on that dose - probably too low. It will now be lower. And, it's low T3 that causes symptoms like fatigue. I think you're probably just under-medicated.
They suggested that I was overmedicated at 100mcg because the Serum TSH was 0.08 below the normal 0.3. The medical note says: Below reference limit. A low TSH may indicate over-replacement with thyroxine. Target for T4 therapy is TSH within the reference range.
At that time my iron and B12 were slightly under. I'm on Vitamin D for life due to it being very low in the past when I was on a vegan diet for 18 months. All of those have been repeated since (maybe 6 months ago) and were all within normal range.
Well, of course, all that about the TSH is absolute rubbish. And your doctor shouldn't be dosing by the TSH because once it gets below 1, it's a very bad indicator of thyroid status. The most important number is the FT3, and as I said, that was probably too low on 100 mcg, but now will be lower. So, I think that's the answer to the 'mystery' about your fatigue.
As for the nutrients levels, just being 'in-range' is not the same as optimal - and hypos need them higher than other people. So, when you get your new results it would be a good idea to post them on here, with the ranges, and let people have a look. Doctors know even less about nutrients than they do about thyroid!
Thank you so much for your response.I don't really know what I can say to my doctor if he liaised with an endocrinologist who has said these results are okay and he would highly doubt that my symptoms have anything to do with my thyroid. Would a private endocrinologist sort out the T3 issue? I will post my next blood results when I get them back.
Doctors use TSH as a marker for over-treatment, under-treatment, and a patient being euthyroid (aka "normal").
But many patients on this forum don't feel well on this method of deciding on treatment. What matters more to most of us is Free T3. It is a far more accurate measure of "wellness" than TSH.
Too little Free T3 leads people to feel hypothyroid.
Just the right amount of Free T3 makes us feel well.
Too much Free T3 makes us feel hyperthyroid.
To find our "Goldilocks" zone (not too much, not too little, but just right) for Free T3 we need to convert our results into a "percentage through the range.
This link is to a calculator that will do the arithmetic for you :
Serum free triiodothyronine level (XaERq) 5 .1 pmol/L [3.1-6.8] 54% of the way through the range
Serum free T4 level (XaERr)19.4 pmol/L [10.0-22.0] 78% of the way through the range
This is where results that work for the patient require trial and error because we are all different it what works for us.
Some of us might do well with both FT4 and FT3 just above mid-range. Others might do well with FT4 at 70% of the way through the range and FT3 at 60% of the way through the range. Some people do well on T3 only and have almost zero T4 and have FT3 slightly over the range. The one thing that few of us pay attention to is TSH unless we have to get an official test from the NHS, for example.
If your results were mine I would think your FT3 was a bit low for me and your FT4 is a bit too high. Since getting T3 from the NHS is extremely difficult I would suggest that you start with optimising your nutrients, because optimal levels of nutrients can improve conversion from T4 to T3.
So the nutrients that are most important for conversion are :
Vitamin B12
Folate
Vitamin D
Ferritin (iron stores)
If ferritin is low in range or under range or very high or over range it would be worth getting an iron panel done to give you more info on your iron-related results.
There are other important nutrients that are often too low in people with thyroid disease e.g. selenium, zinc, magnesium, vitamin A, but I'd start with the four above, plus iron.
There are different forms of supplements for different nutrients. For example magnesium oxide is commonly found in supplements and is cheap. Unfortunately, few people can absorb it well so it does little or not good. There are lots of other possible magnesium supplements and different people prefer different ones. So, before spending money on testing or buying supplements do a search on the forum for fairly recent information to reduce the risk of wasting your time and money.
Thanks so much for your reply. I have some supplements but I don't take them everyday, I always worry incase they are going to interfere with my levothyroxine as it seems that everything interacts with it and the last thing I want is to reduce the potency of my levothyroxine.
I take Vit D, and drink lots of smoothies to try and get as much goodness in naturally as I can, and have just gone off what my blood results say, adding vitamin tablets in if the GP suggests certain vitamins are low.
I tried Floradix a couple of months ago and my stomach ended cramped up in pain with bloating, which I've read can be a response to iron. Going off my GP, my folate, vit D, iron and B12 were all in range at last testing even though I was still exhausted (not sure what I can do if the GP says it's fine as I'm not medically trained to argue otherwise?)
So, selenium, zinc, magnesium (but check out the info on magnesium) and vitamin A as well as the iron, got it! Thank you, I will start there! 😊
As your GP said iron (ferritin) B12, folate and Vit D all in range, ask for a print out of those results and post them here. As Greygoose said, in range does not mean optimal for those with thyroid disorders. They have to be high in the range.
Just a word of warning, don't exceed the recommended amount of vitamin A. In large doses it can be toxic and cause side effects like hair loss. Ditto selenium. We need enough to keep us healthy but very high doses are as harmful as not enough.
I really wish the TSH test didn’t exist!! It’s brought nothing but grief for me. Maybe see my posts. It’s just too easy to say you’re overtreated and ignore symptoms. Suffice to say my TSH results have been low to negligible for 20 years and only because I relented and reduced my dose I experienced all the symptoms of being hypo. Now I’ve had a tiny bit of T3 added I feel better than I have done in years and my TSH is STILL low because I’m a poor converter of T4. Good luck...maybe you could ask your doctors to explain. your T3 and T4 results ?
My doctor in Poland prescribed me 100mcg on weekends and 112 during the week. Perhaps ask doctor to try 100 on week day and 75 on weekends and see how you feel and what your bloods are like? (Having been in UK, I know it's about impossible to get 112mcg).
Thank you, I'll reread all of the replies. It has been a long time. I acted last time by having all my info printed out (blood tests) after the last thread and having as thorough testing as I could get with the NHS. I had many back and forth conversations with my GP regarding my thyroid and raising the T3 conversion question. After pushing for it, my GP was good enough to speak to an endocrinologist for me but the endo said he was almost certain that my fatigue wouldn't be down to my thyroid which seemed to be being managed well. I just ended up crying during the appointment as it has absolutely been discounted and I began to think maybe I was being a bit of a hypochondriac since the endo says it's fine. It's all been documented as chronic fatigue as blood tests seem to be in the normal limits for everything. I don't really know how I can question that when I'm not medically trained? It left me feeling a bit flat.
I'm not gluten-free. I was tested for coeliac disease and was told I could rule that out. I understand that gluten-free diets can be useful in autoimmune situations (due to the leaky gut theory?) but the extra cost and additional meal preparation on top of preparing separate meals for my family and the restrictive element of it has put me off (I had inpatient treatment for severe anorexia around 10 years ago and it was drummed into me to steer clear of any restrictive eating habits so I am a bit reluctant about cutting gluten out when I'm already vegetarian) although I could give it a trial of all else fails.
I have a good list of supplements now which I will start taking once my bloods are back.
Disruption to the HPA axis doesn't sound like good news to me. I've been fully recovered for 8-9 years now and have so far been lucky enough to reverse damage done. Maybe I didn't quite get away unscathed. I'm not medically trained, but I understand the pituitary gland to be linked with the thyroid in the secretion of hormones and the adrenal gland to be implicated in cortisol levels? I'll look at some research around this, although if my brain has been damaged then I doubt that is reversible?
I'm not sure how to approach the GP with the FT3 FT4 issue. I switched GPs after my last post on here, but my present GP has already discussed it with an endocrinologist and been given the same response.
Hi, not much to add to the advice already given here but just to say - your symptoms of crushing fatigue and joint pain sound very similar to mine until recently. I discovered I had normal haemoglobin but low ferritin (Iron Deficiency Without Anaemia). My GP dismissed it as my ferritin was around 16 (it was 7 at lowest) - technically “in range” but a private haemotologist told me that it was a severely deficient result and current lab ranges are out of date. I paid for a private iron infusion as tablets take forever to work and like you I couldn’t tolerate them. I literally feel like a different person now having been on the verge of a ME/CFS diagnosis. I’d look closely at your iron panel results and make sure they check Ferritin too, esp given your medical history. Good luck!
Oh, sorry to hear you were going through this too. The iron infusions have been really useful for you? That sounds brilliant! I'm going to find out the results of my most recent vitamin/iron test and see what "normal" means in my case. I have some repeats coming up this week too so will hopefully have some more answers.
As can be relied upon to receive expert guidance on this forum and has been delivered. I would like to address some of your worries about sleep investigations and concerns about your licence. I am in exactly the same position. When I complained about continuing fatigue I was sent for sleep apnoea testing. Initially I was so relieved there might be a solution or part solution that I was pretty enthusiastic. Tests showed severe sleep apnoea but I never felt confident about the diagnosis. It’s a pretty basic questionnaire. And most importantly I slept the absolute worst, the one night I was tested with the equipment. I really don’t think the tests are fit for purpose. It’s a big commitment to be treated and I think it would be much clearer to test over multiple nights giving your body time to get used to the equipment for testing. To cut a long story short (after being enthusiastic and truly desperate for good quality sleep) I find I can’t use the equipment. However I was so desperate and so glad to abandon the equipment my sleep has improved a bit. I have just been so relieved to get into bed without it! I have all this explaining to make when I am reviewed. I have exactly the same issues as yourself (although retired) about my licence. I have found frankly that this country/government/other people have very little respect (much like doctors) for thyroid patients in general. The explanations about how ‘frail’ and frankly blooming desperate we can be, just is not entertained. Our licences are often our lifeline (not just for jobs). I can get pretty riled about this. The idea that WE don’t know how dangerous we might be? That we might be sensible enough to know what is what? That we might be able to make up our own minds when we can drive! My advice would be to ensure you and ‘they’ commit to proper testing before going down this route OR not at all. We sincerely have enough on our plates without a rather “Nannystate” issue hanging over us. On the other hand one contributor to the forum (sorry I can’t remember who) is actually benefiting from what I see as this totally cumbersome impossible route to help. Just to give some balance. My thinking remains that proper thyroid medication levels are the answer. However I am rather living in hope at the moment.
I absolutely agree with everything you've just said! I've had my licence revoked twice now pending medical investigations which are probably all down to a poorly managed thyroid. I absolutely dread having my licence revoked and the loss of autonomy it brings.
OMG me too. It’s like we can’t win. On the one hand ‘they’ don’t recognise our disablement and on the other they want to take away anything that helps us live our lives. Our cars. Our jobs - I had to give up 20 years ago, impacting my pension as well as my salary. Our right to contribute to society and to become cumbersome to our families. Unable to do housework. Our right to proper treatment - which might do away with any question over our abilities altogether. Nibbling away at our self respect at every opportunity. And yet on a ‘good day’, I can feel almost human, everything still within my grasp but NO, followed up by four days I can’t get off my couch. Dr Simon Pierce says he does not believe people who have this up down thing are hypothyroid. Where is his proof? Ah he does not need it. Ooooh!!
It couldn't be fibromyalgia could it. I have fibro and the aching muscles and fatigue certainly ring a bell. Fibro is very similar to chronic fatigue but pain is more of an issue with Fibro, whereas as the name suggests, fatigue is often the main symptom with CFS.
Also the brain fog and disturbed sleep are typical fibro symptoms. I could write a book on my experiences with trying to sleep well. I dont think there's a remedy, medication or tip I haven't tried. I got refered to a rheumatologist who confirmed it.
Lookout RANT coming. I know I could be very wrong about this but just for my tuppence worth. I was under the impression that CFS is only diagnosed when all else fails. At one time CFS patients were given a wide berth; frankly because the doctors thought it did not exist. Later fibromyalgia filled the ever increasing vacancy for “sink heart” patients. My thinking is now that wrongly under medicated thyroid patients fit the bill. Although CFS and fibromyalgia appear to be an acceptable diagnosis these days, I must say I can’t see it. Fibromyalgia is a diagnosis of knocking out whatever else it is not. Its not conclusive no matter who diagnoses it. It’s a frustrating diagnosis, like CFS. It’s as frustrating as hypothyroidism when doctors do not know how to treat it and have no understanding of it’s effect on (all too often women’s) lives. It reminds me of the sixties and seventies and millions of prescriptions for “Mothers Little Helper”. We were left on our own then too, to not only deal with our illnesses but also to deal with the aftermath of withdrawal symptoms.
I have this impression too. I feel like a lot of my symptoms are down to my thyroid- muscles, memory, exhaustion. For starters I have had these symptoms since just prior to my diagnosis of hypothyroidism. Onto my second Dr, who's spoken with an endocrinologist for me and says it's not thyroid related... I'm not really sure what to do. It is exasperating. I did read that a high percentage of CFS patients have hashimotos... it does make you wonder.Are there particular private endocrinologists that specialise in thyroid problems that can sort it out? How much would that even cost as it's feeling like the likely future course of action after I've implemented all of the daily vitamins and tried going gluten-free!?
I hope the understanding of this condition improves in the next few years!
You can't get the NHS to provide it after private diagnosis?
At present I can't. I'm a stay at home parent with zero income aside from when I take on temp work over the Christmas period, a small art business (which has cost me more than I've made in materials so far) and working in a school over the exam season. All my husband's wages are going out on bills and food now with the increased cost of living. I can only manage bits of work at a time (as well as my art) around childcare and my exhaustion, but I am hoping to work full-time from September when my kids are both in school. If I manage to work full-time then I'd happily give 1K a year to feel well. Can you tell me what benefits you've felt on NDT so far?
Not NDT, sadly. Unless you're Michael Goves wife, the NHS doesn't prescribe NDT. I was hoping my consultant would put me in T3 but he prefers NDT as he believes it to be gentler on the system.
I only work 15 hours a week because it's about all I can manage with all the other pressures of life: house, cars, kids, dogs etc! I'm lucky that between us we earn enough for me to go private. I only do 2 days through choice rather than necessity for my health.
NDT has changed my life. I cannot overstate how radically different my life is now. Before NDT I would get up, get my children and I ready, take them to school/preschool and then come home and sit on the sofa until it was time to pick them up. Most days I didn't shower because it was too arduous. Only washed my hair once a fortnight. Rarely brushed my teeth at night because I was just too tired to stay stood at the sink. Didn't have the energy to stand and wait for the kettle to boil.
Now, a year later, I have another dog, I've decorated the house, we have daytrips, I took on another job, I've just taken on an allotment...
I'm still not quite where I'd like to be but if I never get there I'll still die happy.
That's such a wonderful result you've had with the NDT so far! Life before it sounds much like mine at the moment so it's really reassuring to hear how much better you've felt. 😀
It is possible to get your life back; you've got to fight for it though. Argue back to your GP.
After I was shouted at (!) by a GP that I was only tired because we're in lockdown and everyone is tired, I wrote a letter to my regular GP stating that I wanted to work with them to regain my health. And added some references I was given here and ultimately what I wanted to gain. It worked and I was taken seriously after that.
Ultimately, levo never really helped me so I went private because I knew I'd get no further with the NHS.
Whatever strength you can find is what will need to carry you through this first bit of the fight.
I had some rheumatology investigations in the past (just bloods) and was told all was OK there. I have tended to take the GPs word for it! I've never had anyone suggest fibromyalgia, so I know nothing about it except what you've just told me. My main problem is the fatigue which has my whole body aching, particularly in the mornings, but I'm not in severe pain, just that kind of worn out as if you've been working out or hiking feeling from doing daily tasks. There's no remedy to fibro either? That's really rubbish. I'm sorry to hear that! 😔
No remedy, I've had fibro for 17 years and as with the sleep have tried pretty much everything, painkillers, antidepressants for nervepain and sleep, I've had acupuncture, tried a TENS machine. I've been to the pain clinic but when the pain is widespread there's very little they can do.
I was very much hoping that when I got diagnosed as hypothyroid 2 years ago that taking Levo and getting optimised on my dose would make the Fibro disappear. It hasn't happened unfortunately. I think we sometimes pin everything on being hypo and sometimes it genuinely is something else.
Ah I'm really sorry, this does sound like a horrible situation to be in. I definitely empathise about hoping it's something that can be treated/pinning it on hypothyroidism. Everything I read online says how "easily treatable" thyroid disease is, but coming on here tells a completely different story.
Depends on who you speak to, doctors think it's easily treatable, just pop a pill and it'll magically make everything OK. Talk to thyroid sufferers and it's a different story. I know which one I believe more.
That said though thyroid disease is pretty common and everyone and their wife aren't on this forum so there are clearly people doing OK on standard thyroid treatment and getting on with their life. Guessing that we are just the unlucky ones 😒
I can understand your concerns regards driving. If you fill in that form and GP puts the possibility of narcolepsy in your records, you will probably have to inform DVLA which from experience I know can be a nightmare to deal with. Because symptoms of thyroid and narcolepsy overlap, in your position I would take on board all the advice you have been given here and put it into practice. Tell your GP you want to deal with one thing at a time and try to correct your thyroid symptoms first. Fingers crossed that way you will see an improvement and avoid any involvement with the DVLA.
Thank you. I've been speaking to my latest GP regarding my thyroid for the last 2 years using some helpful suggestions I had on here last time I posted and after liaising with an endocrinologist he says they have ruled out it being linked to my thyroid. I'm not really sure I can keep pushing it with my current GP as I honestly think he thinks I'm being a hypochondriac obsessed with my thyroid condition. I wonder if once I see the chronic fatigue specialists they would listen to it perhaps being thyroid related as I've read that a huge proportion of chronic fatigue has Hashimotos? My previous Dr fobbed me off with anti-anxiety medication when I cried in the practice telling him my health isn't right because on the surface I look healthy. I feel that I will probably need to go for private investigations, which at the moment I can't afford. I've gone through the licence revoking in the past and it was awful. The last thing you need when exhausted is having to add extra travel and earlier wake-ups, and the stress of dealing with DVLA 😴
Whomever would have thought looking healthy on the surface was an excuse to think the patient was ok? I know for a fact that one of the useful things taught to doctors is “Check the Nick of the patient”. One can clearly see how this would apply to many situations, floppy children for example. I was told this by a GP who misdiagnosed his own Grandchild who had type 1 diabetes! Anyway the point I am making Female123 is that I also experience the apparent view that I look healthy on the surface, whilst even obese. I have been pulled up by people who don’t believe my age. At first it’s flattering but in a ‘healthcare’ situation it’s a downright drawback. I feel I have to present myself in public. In private I can be an utter mess. I could not concur more with what you say about hoping the understanding of doctors and thyroid gets better. I suspect that thyroid disease, as a specialism, is not sexy enough for young doctors to go into. If they do any internships in endocrinology (thyroid in particular) I suspect that is enough to put them off. Some consultants behaviour is shocking (and its not limited to endocrinology). However doctors could do so much good in this area, if willing.
You ask what can you do if Docs say it isn't the thyroid ......... well quite a lot.1 As advised POST recent results including Vits. D, B12, Ferritin and Folate
2. As advised raise them to OPTIMAL in range ( before taking random supplements that may or may not be needed)
3. After you have done this and if symptoms persist, ask advice on approaching doc for a trial increase in Levo.
Cover the basics and hopefully you will see an improvement.
I also have exhaustion and memory problems (my hubby keeps commenting) and my doctors sent me for a sleep study test and of course I have mild sleep apnea (If they tested everyone in the world everyone would be diagnosed with some form of sleep apnea) anyway I got the machine and went through so many masks and eventually I boxed the machine up and sleep without it ….. the mask caused me to have heartburn and feel like I was choking on air and I slept less with the machine then without it…. Magnesium a couple hours before bed has been a blessing for me helps me relax and makes sleeping easier. But we are all different in our needs.
Did you have your driving licence revoked whilst you had this investigation? I've had some sleep problems particularly sleep paralysis experiences in the past so I do think it's possible, but then my guess is that it's all thyroid linked anyway. Magnesium is something that's been mentioned here a couple of times now so I'm going to do a bit of research on it.
No my license was not revoked for sleep study and can’t imagine why it would be unless you have narcolepsy in which case yes I can probably see license being revoked but I wonder how a sleep study will and possible C-pap help you if you have narcolepsy since this is a different type of medical condition then sleep apnea or at least I think it is.
I am surprised they have mentioned Narcolepsy at this stage and not sleep apnoea, which should be explored. I know a lot of people who not only have underactive thyroid but also have sleep apnoea.
You don't have to have a weight problem, many have it, all shapes and sizes. But, if you snore or anyone snores, it could mean, that you potentially have it. I have both and they believe that I have always had it, but it had gone undiagnosed until I was 52. Just for the record, I was born with no thyroid function at all. For two thirds of my life, I have been on the same dose. It was reduced by someone who professed to be a professional but I will save that for another occasion and something, I feel very sensitive about it, due to what problems it caused for me and since. When I was diagnosed, I was on my current dose.
In the past they have blamed your weight and says it causes sleep apnoea, but that is not true. The latest research says that any weight gain is caused because of undiagnosed sleep apnoea and insulin resistance. I also have a male cousin who is as thin as a rake and yet he has both underactive thyroid and sleep apnoea.
Regarding driving, if you were to have sleep apnoea over narcolepsy, then as long as you are conforming to four hours sleep a night, (this is checked via a reader card in your cpap) then you will not lose your license. Your consultant will help you with that. You will and should have annual check ups with your sleep team.
But also when we have a underactive thyroid, we can walk hand in hand with B12 deficiency, pernicious anaemia, iron anaemia and vitamin D deficiency. All have similar symptoms to thyroid issues.
Your GP can do all the above tests for your bloods and I am surprised they haven't already. Regarding the sleep test, there is a questionnaire initially and it will score you, before anything goes further. I notice you say you have done one for Narcolepsy, but it should be about sleep apnoea first. I hope the sleep team will be able to help you.
The GP did ask about sleep apnoea, but according to my husband I don't snore, I have however had many terrifying episodes of sleep paralysis and night terrors (though none for a few years now) which I have read are linked to narcolepsy. If I'm at home I'll fall asleep, and I could sleep for several days straight given the chance, without ever feeling refreshed. I don't fall asleep into my food or while chatting with people though, so if I do have narcolepsy it is a mild form. The GP wanted to rule a sleep disorder out as the last possible cause of my exhaustion before referring me to a chronic fatigue clinic, as in the eyes of the GP all of my vitamins and thyroid levels are optimum. I did have these bloods all done this year and they came back normal (after previously having low iron, ferritin and B12). I don't have the latest results but he said they were all back to normal and has ordered a repeat for me to have done this week.
If I honestly answer the Epworth sleepiness scale I score 11/12 (mild excessive sleepiness) but the cut off for "normal sleepiness" is 10. It's a very fine line. At the time he gave me the scale I was pleased thinking it may be the answer and maybe medication for narcolepsy could help the exhaustion. I was trying to completely discount the thyroid issue as being related because it seems like such a battle with the GP and I began to believe I'm wrongly pinning every medical issue upon that. I've changed GP and have adjusted dosage a few times over the last 7 years, but always feel hopeless after speaking with them regarding my thyroid. I thought it might be easier if this was all a sleep issue to be honest.
It was only after reading "If stopped at traffic I could dose off" on the scale I was given that the alarm bells rang and I thought this could potentially have me without a car again if I come out as "excessively sleepy". Just to clarify, I NEVER drive when I'm excessively tired.
I'm supposed to hand the self-reported test in tomorrow, but if it means having my driving licence revoked I'll be a heck of a lot more sleepy and life very difficult.
After reading lots of responses on here, I think I am going to hold off handing the score in, until my bloods are done, post the blood results on here, if the ones he orders aren't thorough enough I'll pay for a private one to cover the things that are missing, and if there is something to suggest my thyroid is in play I'll try once again with that before I risk my licence.
I think you are doing the right thing. I had to go private in the end when one particular GP dramatically dropped my dose, but other things were happening as well. This was long before I was diagnosed with the sleep apnoea. Although I still have my licence, I prefer not to drive, as I do not trust myself. I can literally drop off without realising, once with a iron in my hand. Narcolepsy was mentioned, but then I was given a new NIV, as I have respiratory problems as well and since then, I have had no problems. Before I was diagnosed, I was hallucinating and really thought I was going mad, but I think I was so stressed out with lack of sleep and not realising what was happening at the time.
Ironically. when my GP reduced my medication, she said "Too much medication, can be bad for the heart, BUT if it is too low, we rather you have the higher dose??" But would not increase my dose. There is always contradictions.
I hope you get your answers, but above all take care.
That makes a lot of sense. Falling asleep with an iron in your hand sounds really scary! I fell asleep on the back of a motorbike once but it was before I had my hashis diagnosis. Sleep plays such an important role in our wellness. I've had my dosage ping-ponged a bit, and on the higher dose I felt lots of physical anxiety symptoms, but on my normal dose I'm extremely tired. I wish they made increments smaller than 25 at a time to get used to each increase gradually.
Thank you, I hope you find your right medication level too. I don't understand why they chose not to allow the increase for you?
"But also when we have a underactive thyroid, we can walk hand in hand with B12 deficiency, pernicious anaemia, iron anaemia and vitamin D deficiency. All have similar symptoms to thyroid issues."
What is the technical reason for this correlation? A lack of stomach acid, caused by thyroid issues, and therefore absorption issues arise?
No as quoted above, having one condition can lead to the others. The symptoms are similar, especially in lack of energy and fatigue and all the above should be checked annually. Nothing more, nothing less.
Feeling sleepy whilst driving. Hmm ... could it be sleep apnoea?.Ask your GP to send you to a sleep clinic for analysis? I have Hashimoto's and I've stopped all grains inc rice, and maize and dairy and feel much better.
Ah no, sorry one of the questions on the sleep form was asking about feeling sleepy while driving, which made me very concerned that undergoing sleep investigations could lead me to have my licence revoked. I wasn't saying I feel sleepy at the wheel. I would never drive in that circumstance.My GP is looking into every avenue to explore my fatigue but rules out my hashis as the reason after speaking to an endocrinologist. Before he refers me to a chronic fatigue specialist he has asked me to fill out a sleepiness scale to rule out a sleep disorder, such as narcolepsy. I think he ruled out sleep apnea as my husband says I don't snore, but I have had many sleep paralysis episodes in the past and a habit of dosing off throughout the day.
I don't drive if I feel that sleepy.
I'm really glad to hear you feel better with the dietary changes. It must be very difficult to implement those. I'm hoping to explore all other avenues before I go into food restrictions as I am already vegetarian. I was dairy free/vegan for 18 months and ended up with a severe vitamin D deficiency. Do you take lots of supplements, all the ones mentioned on here?
I have had bloods done via NHS (I'm not in a position to afford any private testing right now). My GP has been great and listened to my concerns. My vitamins and iron etc were checked and all came back ok, with the exception of B12 and ferritin which my GP said were a bit low, but he felt it could probably be explained by being vegetarian and female and was unlikely to account for my fatigue. I don't have the actual results from that set of tests, he just told me the results over the phone, but he did send me the following results from a second set of tests in the post:
Serum TSH level: 1.6mIU/L [0.3-4.5]
Serum free triiodothyronine level 3.8 [3.1-6.8]
Serum free T4 level 17.0 pmol/L [10.0-22.0]
If anyone can comment upon these results that would be great as I need to decide whether to tell the GP to refer me to the chronic fatigue clinic or delve further into thyroid issues. I've been on a higher dose 100mcg of levothyroxine in the past, and felt pretty ill on that too, with some symptoms of overmedication (weight loss and anxiety) although this was a couple of years ago now. I'm going to implement vitamins now I've got my results and make sure I increase my B12 and iron. I am still on TEVA brand levothyroxine so I could enquire about switching that if there's evidence this could help my current situation?
I had a little chat regarding T3 conversion with the GP and mentioned how people had relayed on here that many don't feel well while their T3 is below 60% of the range. The GP listened but said the endocrinologist had previously gave him examples of studies including a metaanalysis of patients on T3 treatment showing no improvement of life quality and further studies showed it could be quite dangerous, with side effects of atrial fibrillation for instance.
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