Hi Everyone, first time poster here, but unfortunately long time sufferer.
Firstly apologies for my rather depressing user name (I may change it) and for the sob story you are kindly about to read.
Until 2 years ago I was working as a professional in a very tough industry. Working many hours, under lots of pressure, but still had the energy, most of the time, to play sport and go to the gym in my spare time as well as see friends, go to social events and more. However all of this was becoming harder to do, about 3 years ago I was driving to a car park to sleep on my lunch breaks, except I was too stressed to sleep. Also at this time I fainted/fitted 3 times, which hadn't happened to me since I was going through a marriage break up late 2007 and into 2008.
Back to 2 years ago.. I was away with friends for a weekend, and was so exhausted the whole time I couldn't join in the activities, excused myself to the hotel to sleep, but as usual, I couldn't sleep. By the time it came to the journey home I had my first ever panic attack at the airport, quite a mild one to what I experienced in the months after, but it scared the life out of me and then I had to go on a plane home. 2 of the faints/fits I mentioned earlier have been on planes. Around this time on my commute, approx 1 hour motorway drive, especially on the way home I kept feeling that I was going to pass out because I was so shattered, which made me panic.
Basically by this point I was in a right state. Exhausted, didn't know why, and starting to notice anxiety and panic issues.
I promised myself on the plane that I would finally go to the GP to get myself checked out, which I did a few days after getting home. I was found to be hypothyroid with hashimoto's. They put me on levothyroxine. I quickly got worse and went back to GP only a few weeks after the first visit because I felt like I was going to collapse everywhere I was going - Tesco, work, driving, seeing friends. A further blood test found coeliac disease, which was then confirmed by biopsy.
I was actually relieved! Take the thyroid hormone every day and eat gluten free for life and I'll be fine! I'd found the answer.
Here I am 2 years later, I have been let go from work. Which I was on a phased return worked 3 part days a week anyway. I am more exhausted than ever, yet I am doing less than I've ever done! I haven't played sport in nearly 2 years, I never see friends anymore, I can't do anything at all past about 4pm because I'm just completely gone. My eyes sting first thing in the morning from where I'm so tired.
There are several other symptoms too but I don't care about them, I just want this overwhelming exhaustion to lift and get my life back. The way I see it is that the weight gain, hair loss, freezing hands and feet will all get better naturally when I find out what's wrong with me.
Anxiety is a bit better than it was, and it was crippling at one point 18 months or so ago. This is better due to a combination of things: CBT, Pregabalin, and the fact I don't go anywhere to feel anxious.
Ok lot's of back story there, thank you for reading.
My endocrinologist has been brilliant, my GP's have been awful. They keep trying to label me with CFS/ME but I won't accept it, and constantly try to prescribe me anti-depressants.
I spoke to an amazing woman called Lorraine a few weeks ago, who is advocating change to thyroid treatment through the Scottish Parliament. She was very passionate and helpful and has helped me decide to have another push to try to treat myself, not that I'm not trying of course! After speaking to Lorraine I realised that talking to other people for advice, hearing their stories and not facing this alone may help me on a mental level.
I was on 75mcg levothyroxine and 100mcg on alternate days, and about 3 months ago managed to persuade my endocrinologist to prescribe me T3. He dropped my levo to 25/50 on alternate days and added 20mcg T3. Within 2 weeks I was in a terrible state, literally almost dropping to the floor with tiredness. He has increased my levo to 100 along with the T3. However I'm still so shattered. Latest blood results below:
28/07 (with T3 and dropping levo down) T4 = 6.5TSH = 1.09T3 = 4.6
I am due a blood test in 3 weeks following increasing levo back up.
B12 tests have been normal, as have cortisol and iron. I take Adcal D3 for low vitamin D and low calcium in my forearms which was picked up in bone density scan following coeliac diagnosis.
Any help or advice would be gratefully appreciated.
Thank you so much for anyone who read all the way to the end of all that!
Take care
Lee
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ExhaustedLee
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Oh boy! You poor thing. I haven't got a clue really but just wanted to send you a t'internet hug! Which is aboutasmuch use as a chocolate fire guard really...lol.
Hypo is poop that's a fact. I hope you find some help and a way to feel better.
Thank you for your kind words. I did reply yesterday in the main thread below, but at the time I did not know you wouldn't get notification unless I replied in this box instead! Thanks again.
Hi. Sorry you are having such a tough time. First and most importantly, do you have your B12 and serum ferritin and FBC etc results to post? As you know, "normal" is meaningless really because their ranges don't have an evidence base. You might be low in iron still.
When you were diagnosed as celiac, how carefully were your nutritional deficiencies checked and addressed, do you think? Were you supplementing all the fat soluble vitamins in sufficient quantity, do you think?
It is possible to have celiac disease and autoimmune or non autoimmune gastritis at the same time - has the latter been ruled out in your case? Have you tested for h pylori? Anti parietal and anti intrinsic factor antibodies? If a second illness is preventing absorption that could explain why you are not yet better.
How careful are you being on the gluten free diet? Are you scrutinising every single label and questioning everything when you go out, including the chips, whether they are being done in a separate fryer? Are you completely scrupulous?
What are your D3 levels and how much are you taking?
You don't have to reply to all this! I can see I sound like one of those people with clipboards who stop you in the street. But they are questions you might ask yourself. The first bit is very important though, if you can post your other bloods people here will comment. My guess is that B12 and ferritin may well be very far from optimal.
Thank you for your interesting informative reply. I have replied properly yesterday in the main thread below, but at the time I did not know you wouldn't get notification unless I replied in this box instead! Thanks again.
With every good wish in the world for you to start improving - and soon - really hope this might help. I have been hypo for many years (also PA and other autoimmune). Not sure if it will be the same for you as we are all different - but I think the defining thing that turned me around 15 years ago was getting my TSH down to <0.005 - a suppressed TSH - and keeping it there ( I now realise I relapsed after my TSH started to creep back up from nothing) - that and B12 injections made all the difference to me after being diagnosed. I doubt very much whether 'normal' B12 is Ok for you with coeliac - aim for high!
Thank you for your kind words and advice. I did reply properly yesterday in the main thread below, but at the time I did not know you wouldn't get notification unless I replied in this box instead! Thanks again.
Hi. i had exactly the same problem as you with my GP last week regarding offering of antidepressants and the cfs/me diagnosis.
i had a lot of replies from the kind people on this site who basically said not to accept this diagnosis...i certainly didnt want the antidepressants...im not depressed..im just cheesed off with the exhaustion on a daily basis despite messing around with the levo that i take.
I havent tried T3 yet but am toying with the idea if i cant improve the way i feel with diet and vitamin supplements as i was low in ferritin and a little low although within range B12. My vitamin D was also low and for this i take D3 as well.
I am no expert and am in no way medically qualified but i would say looking at your pre T3 results that you might have had a t3/t4 conversion problem, others on here will be able to back me up with the science on this but i am hoping now that you are taking some t3 that in time you will feel an improvement.
i do hope you start to see some light at the end of the tunnel soon.
Thank you for your message. I did reply properly yesterday in the main thread below, but at the time I did not know you wouldn't get notification unless I replied in this box instead! Good luck on your journey
Yes, but do not eat gluten-free foods! Let me explain.
Wheat raises blood sugar higher than nearly all other foods, including table sugar and many candy bars. The few foods that increase blood sugar higher than even wheat include rice flour, cornstarch, tapioca starch, and potato flour—the most common ingredients used in gluten-free foods. Gluten-free whole grain bread, for instance, is usually made with a combination of brown rice, potato and tapioca starches.
These dried pulverized starches are packed with highly-digestible high-glycemic index carbohydrates and thereby send blood sugar through the roof, even higher than foods made with wheat flour.
This leads to weight gain, diabetes, cataracts, arthritis, cancer, dementia, heart disease and growing belly fat. This is why many celiac patients who say goodbye to wheat but turn to gluten-free foods become fat and diabetic. Gluten-free foods as they are currently manufactured are very poor substitutes for wheat flour.
Anyone who consumes gluten-free foods, like gluten-free muffins, should regard them as an occasional indulgence, no different than eating a bag of jelly beans."
I don't know whether this will assist, but thought I would pass the information on.
lc1973 I hope you feel better soon and get better support. I'm sure anti-depressants have their place, but my arguement with the GP is if they help fix the exhaustion I (and many others) wouldn't have the anxiety problems in the first place!
Thanks HashiB12. I have heard that the lower the better with the TSH. Lorraine, that I mentioned in my long post, also believes I may have B12 issues. I hope you are feeling well now.
Aspmama, thank you for making me smile! You are not a person with a clipboard stopping me! If you are it's just to help me, so I thank you. I can promise I am following the gluten free diet to a tee and have done since day 1, I will do anything to feel better again. The day after the biopsy confirmation I threw all gluten containing foods out from my cupboards. I don't eat out anymore unless I really have to, and then I check everything is done properly.
I had private healthcare when I was working. So unfortunately I don't have this anymore, but this is an extract from a letter he sent after doing prolonged glucose tolerance test and loads of blood tests in October 2014:
"The positive gastric parietal cell antibodies are associated with normal B12 levels but symptoms of flatulence, and gurgling after meals. I wonder whether this is related to a degree of achlorhydria and impaired protein digestion."
I have had MRI recently to check for Chrohn's and this came back negative.
I will dig out and post the blood results this morning.
So you're positive for parietal cell antibodies. So you should also post on the Pernicious Anemia forum which is full of expert sufferers. So I was right (does small dance round living room) you have three autoimmune diseases/conditions going on, no wonder you feel terrible.
You will have achlroydia because of the hypo, can barely absorb B12 because of the autoimmune gastritis, and you also have flattened villii because of the celiac so you have been unable to absorb fat soluble vitamins and a host of minerals, possibly including iodine, though I can't find any research on the iodine status of celiacs at diagnosis.
"Normal"! pah. Need psychologists or psychiatrists, pah. Your body has been starving. Tackle B12 next.
in reply to
Tell the PA forum that quote from your dr and your B12 levels, your other diseases, and how you are feeling. They will be v informative.
Thanks Aspmama. I will post on there and see what people say. Yes I have hashimoto's, coeliac and vitiligo. So that's the unwanted hat-trick so to speak!
OK, this is not a scholarly ref - but a good start. Your result on the positive parietal cell antibodies shows you have autoimmune gastritis, not the gastritis caused by h pylori. Your relatively good B12 levels which made your dr discount the positive parietal cell antibody test (fool! that he was) were, I would guess, caused by your supplementing vitamins when you began to feel really ill and tired. The PA forum may well tell you that you need injections of B12.
Up to/around 35 per cent of those with hypo also have autoimmune gastritis. You are in a very unlucky minority which also has celiac - only around 20 per cent of those with hypo also have celiac, according to research. (I say only - that's a lot, the rate in the normal population is thought to be one in a hundred.)
My guess as a (very cross) layperson is that the malabsorption may well precede by many years and cause the hypo. If you can get on top of your gastritis and celiac you may end up on less levo.
If you search autoimmune gastritis (AIG) you will find quite a lot of info. It is very confusing, in that it is often used as a synonym for pernicious anaemia, but it it not the same as PA, PA is the end stage, and it is possible to have AIG without PA, something your dr had not realised.
Thank you so much for taking the time to send such an informative post! I did not know that I had autoimmune gastritis. The wording of that sentence in the letter has always puzzled me. I thought he was saying there may be a problem but he's not sure. I have much to read and research now from your posts and a couple on the PA forum too. But it will be tomorrow because my eyes are stinging and my brain will not be able to focus on such technical things at this time of the night so I will reply again tomorrow. Thank you so much again.
Just one quick question though. That letter was from my endo following blood tests. But surely the gasteroenterologist would have found this AIG during the endoscopies?
Classic pernicious anaemia is diagnosed so far as I understand by blood tests and by autoimmune antibody tests. Your blood tests would be quite confusing because you have celiac as well, so classically you have macrocytic anaemia with PA and microcytic anaemia with iron insufficiency. You're at risk of both!
I don't know enough to know how clear the signs are on endoscopy, but it is possible your gastro was just looking to confirm the celiac by the gold standard, and not looking at your stomach lining at all, but at your intestinal lining. Or like your endo, have seen the positive anti parietal antibodies on serum tests, but taken the view that because your B12 was high by "normal" standards it wasn't PA and therefore wasn't important.
I will look for a better link for you on the AIG which goes by a number of labels.
There are a number of research studies on Atrophic Autoimmune Gastritis (same thing) collected here if you get the energy to look at them. Just looking for something a bit more user-friendly for you...
Thanks Aspmama. It does seem from what you've said, and people on the PA forum plus Lorraine that I've mentioned before that it's very likely this is part of my problem. Maybe if I get B12 injections and correct thyroid meds I could get better.
Actually brought a tear to my eye even typing that. I'm so far from feeling "better".
Thanks ClivevSmith for your post. Yes I have learned much on gluten free foods over the past 18months or so. I do consume too much "rubbish" gluten free stuff and have actually cut down on this lately. Full exclusion will be needed in the long run I know. I definitely have a belly nowadays which used to be quite a flat tum! This is down to lack of high intensity exercise I used to do, the gluten free foods, and the hypothyroidism.
I chased the red cell folate twice and got the response that it was "normal". I don't want to push the endocrinologist too much as he is very helpful, and he emails me as his waiting list is many months long.
Vitamin D is now optimal at 86 when tested in May. It was as low as 30 a while ago. "therapeutic level 80+"
This is another extract from the Oct 2014 letter re B12: "normal active B12 and red cell folate (126pmol/L and 738nmol/L respectively" It doesn't mention the ranges though.
Lee, the way this site works you have to reply individually to posts. Use the orange Reply tab underneath the post you are responding to and an email and on-site notification will be sent to each member you reply to. If you want to, reply to each member individually and say "see post below".
FT3 4.6 is mid-range which is satisfactory but some undoubtedly feel better with FT3 higher in range. Increasing Levothyroxine or T3 will raise level but is likely to suppress TSH. Suppressed TSH is common when taking T3, although endos are often keen that TSH should not be suppressed. FT4 is low because you are taking T3. Higher levels of T4 aren't needed for conversion when taking oral T3 which delivers T3 directly without need for conversion.
Symptoms do sometimes lag behind good biochemistry by a couple of months. Taking T3 can use up cortisol and this can cause tiredness when first taking it. If you Google "Adrenal Cocktail" you may find this beneficial.
Your July bloods, B12 and vitD look good. PA Soc say B12 1,000 is optimal. You may have a little more energy by supplementing 1,000mcg methylcobalamin sublingual lozenges, spray and patches, and a B Complex vitamin to keep the other B vits balanced.
Maintain vitD levels Oct-Apr when ultraviolet levels are too low to stimulate vitD by taking 2,500iu D3 softgel capsules, drops or spray. Take vitD 4 hours away from thyroid meds.
Oh right. I've been using the big reply box and "submit reply" button at the bottom of the thread as I thought it was a thread people add to.
Thanks for your info. I will definitely supplement my vit D levels over the winter. Re the B12, although my bloods look okay I believe there may be an absorption issue. Possibly due to the coeliac disease.
I literally have zero energy, so lethargic and so so exhausted all the time. I feel off balance and "not right" all day. A few years ago I was so busy and active. I'm like a completely different person now.
Thanks Clutter. I meant that my blood results for B12 look ok, but that doesn't mean it's hitting the right places so to speak. Thank you I will definitely try the sublinguals.
Ah thank you for those words. It is very hard, I thought nearly 2 years gluten free and on levothyroxine I would be well by now, but as I said in the initial post, I'm worse than ever.
I have just checked back through blood results and found I was tested for ferritin in Oct 2014. Result was 73, but it doesn't say what the range should be.
Lee, it may be worth retesting as malabsorption may mean ferritin level has dropped. Half way through range is optimal and some doctors think it should be >100.
Some people recover quickly, but others aren't so lucky. It's 3 years since my thyroidectomy but problems with Levothyroxine made me very ill and delayed my recovery. I've been 'well' for 18 months but energy remains low, and I lost fitness due to being bedbound for a long time, and have to pace myself carefully still.
Thanks Clutter. I am going to get some different tests done through one of those online companies to try to get to the bottom of things. Maybe I will get them to check ferritin.
Bless you that must have been awful. I really hope you regain your energy soon.
Thanks reallyfedup. I answered re the gluten free in my last reply, and also included blood results.
2) Brand is mercury pharma for both levo and liothyronine. I started on a different brand but I it gave me red itchy rash so the pharmacy gets the mercury pharma in for me.
3) No. GP and Endo said "there's no such thing as adrenal fatigue".
4) Do mean in terms of allergic reaction or perhaps feeling sick? If so, then nothing that I've noticed
5) Yes I have suffered with hayfever for 17 years. I get it very bad from mid may to end of July.
6) Yes non stick pots and pans, and a george foreman grill. I have checked water supply for added fluoride and this was negative. I will check for aluminum salts though.
I do eat a lot of fresh produce since going gluten free, but I admit I also eat a lot of processed stuff too. I'm sure I would feel healthier if I cut the rest of this out and it would definitely help my stomach symptoms, but can't see how it would cure this terrible fatigue. I should be feeling a lot better having been gluten free for quite a while now.
The natural dessicated thyroid is a good shout. I do think that could be the way forward, as I'm certainly not feeling better with the addition of T3.
I hope that you and your family are feeling well now. Thanks for your reply
Hi Lee, just a couple of thoughts, your B12 level can look good but it doesn't mean it's getting to your cells, and your folate and ferritin need to be optimal to facilitate this (so your new tests should shed some light on this)
If you're taking calcium and D3 it is recommended to take K2 as this directs the calcium to your bones and away from you arteries
I supplemented with Nutri-meds adrenal cortex plus before starting T3 as (adrenal fatigue does exist) and you can be intolerant to thyroid meds if your adrenals and cortisol levels are out of whack.
I too am gluten and dairy free, inject B12 and take folate, B-complex and iron, Vit D & K2 and also magnesium which you may want to investigate - I then introduced T3 only slowly and over weeks to allow my body to get used to it and have got a lot better - one thing was missing, potassium - I now drink coconut water (can't stand banana) and this has been the final ingredient to bring me somewhere approaching normal - good luck and keep going 😉
Well I don't take the adcal d3 very often anymore because someone said it may be making me worse.
That's a lot of supplements, but it's really good that you're starting to feel better. Do you mind if I ask what was wrong with you and your symptoms that made you start taking the supps?
Hi Lee, well it all started with the usual symptoms, no energy, numb toes, very pale, lots of joint pain, palpitations, aching muscles, too many to list! I got blood tests which revealed B12, folate and iron anaemia - diagnosed as PA (family history of it) I tried sublinguals but had to go for injections as GP as symptoms got worse - had three monthlys and still got worse, doctor refused any more so I started self-injecting and taking folate, iron tablets and a B-complex as recommended on the forums... lots of symptoms got better, the joint pain, dry skin, swollen face, palpitations and crashing fatigue in the afternoon stayed - Dr refused to test thyroid but offered to test diabetes and said anything else was down to bad posture (I don't have bad posture, often get complemented on how I carry myself!) I got mad - started researching thyroid symptoms and decided to go gluten and dairy free and take Vit D & K2 and magnesium in case my symptoms were down to autoimmune antibodies or general poor health - I lost the joint pain but still the crashing fatigue remained - I ordered T3 privately, started the adrenal supplements, and read Paul Robbinsons book and started slowly, I only had a quarter tablet 4 times a day for two weeks, monitoring my temperature and blood pressure very frequently, I slowly upped the intake and only when I got to half a tablet did I notice I had more energy and could actually concentrate - I have slowly increased and monitored and now live a fairly normal life (if you count chugging down loads of vitamins and pills every day normal) but I can do Zumba twice a week, a power walk and yoga once a week and carry on a normal day until I go to bed and get a good nights sleep (previously unheard of - which is why I had a month of adrenal supplements before I went on the T3, if you wake up at 2-3am its your adrenals pumping adrenalin into your system to help your liver detox - now I take 12.5mg of T3 at bedtime and sleep like a baby) sorry for such a long post but it's been a long journey of three years to get to this stage - I think I've been blessed with a particularly useless GP and for me, self-treating has been the biggest help -
Ah bless you I'm reply pleased you now have the energy to do zumba and other activities after coming from such a dark place, that's great! Can't believe your GP said it was all down to posture! That made me cross reading it, so I'm not surprised you were mad! When my GP told me I had coeliac disease she said "gluten free food tastes like cardboard, but just put some salt on it and it'll be fine" Where do they train these people eh?
Were you able to still go to work with all this going on? I was let go from my job a few months ago and I am in no state to work at the moment unfortunately.
My sleep is terrible, so I'm pleased for you that yours is improving. I've been to an insomnia clinic which taught great techniques but they're kind of useless to me as I believe if my health improves then the sleep will come naturally.
So are you taking t3 only then? How much do you take?
I do think I need lots of supplements but it's difficult to know exactly what I need, until you know what's wrong with me! If that makes sense?
From all the help on here so far, and from what I've researched over the last 18 months or so it seems that my thyroid meds are completely wrong and I need to heavily supplement, and also completely change my diet. Big changes ahead, but I'd do anything to feel better again.
Oh that's another one! Pink Himalayan salt! change to that its much better for you
I have been lucky enough to be self-employed and could fit the work in and around how I felt - if I'd had to do a nine to five job I would not have managed it, it was all I could do to walk my dog without feeling like I needed to lie down in the field and wait until someone noticed I was gone and come to rescue me!
I am on T3 only, I suspected even if the GP had given me T4 I would have had a conversion problem so I thought I might as well give my body what it needed - and it needed a lot initially! I took it slowly to allow my body to get used to something it had probably been seriously lacking for decades - now, after three months since I started, I take 25mg first thing in the morning (8 o'clock, when I wake up) another 25mg around 1pm (or 2pm if I had lunch at 1pm) and then 12.5mg at 5pm and another 12.5mg at bedtime - sometimes now I can miss the 5pm does (if I've had a fairly quiet day) and it took about two months for me to feel my base levels were restored and so the exact timing of the dose is not so crucial now, if I'm low on T3 I get palpitations, neck ache and my tinnitus starts screaming - then if I take some it only takes 30 minutes for those symptoms to subside, the more potassium I take I feel I will be able to reduce the T3 a bit - I've never yet gone hyper but probably because I've erred on the side of caution and taken it slowly.
I am on every other day B12 injections and feel this is crucial too - I hate the whole gluten free thing - earlier this week I was actually craving a scotch morning roll - I mean really craving it, I could taste it, smell it, took all my will power not to shove the whole thing in! LOL!
Wow that seems a lot of T3, but then you're not taking any T4 so that would be why I guess?
Did you get the B12 injections through your GP? A lot of people seem to be saying that I might need them, but doesn't look like I'll get them on NHS because my blood results are in normal range.
Sounds like you've taken your healthcare very sensibly and carefully and it makes me smile that you're getting there with it. You should be proud of yourself!
Well M & S do gluten free scotch eggs. Just so you know the next time you have that craving..
LOL! Yes I've had a few different M&S GF products, and Tescos too - not so keen on Sainsburys GF range - did find some lovely double chocolate cookies in the Co-op last week aswell
I self-inject at home - my GP only wanted to give them 3 monthly and that was nowhere near enough for me - there's lots of help on the PA forums here and on FB if you want to go down that route - I think self-treating is worth a try as you'll soon know if it's doing you no good or if things improve B12 is only a vitamin which your body naturally gets rid of any excess but if you do make sure to take folate and keep an eye on your ferritin levels
You sound as bad as me for the gluten free goodies! As another poster said earlier in this thread though it is not doing me any good and I know that deep down. I eat loads of healthy foods, but also lots of rubbish. I need to go all natural and zero added sugar too. It's just difficult with such a sweet tooth and being too shattered to prepare and cook proper foods. Excuses excuses I know!
I will see if I can get the ferritin retested on NHS, if not I will do it privately.
I started on T3 a couple of months ago on 10mcg first thing, and 10mcg at lunchtime. It hasn't seemed to make any difference to me.
There's an analogy that Paul Robinson uses, T3 is like the waves coming in onto the beach but there is a wall of rocks at the waters edge, the water (T3) can only breach the wall when the waves are big enough - so a small amount of T3 can have little or no effect until you get the right dose for you - I felt nothing on 7.5 or 10mg, when I took 12.5 I started to feel something, more even energy and not so fatigued - I gradually built up from that. You may need more than 10mg to feel any difference - try 12.5 and see how you feel - X
Well I have a follow up thyroid blood test in 2.5 weeks so I want to see what they are on the current dosage (100 levo, 20 T3). I've only been on this for a few weeks currently.
Cool, just bear in mind T3 suppresses your TSH, so that might appear lower than expected - your GP might think you're over medicated if he us not used to seeing results with T3 factored in
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Adding T3 to T4, not sure which way to go
How to know which symptom is which :)
My turn!
Is there a better way.
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