I have known I've had Hashimoto's for about 14 years or so. I always struggle taking the levothyroxine, and when I was first diagnosed there was very little information out there to help guide you through the process, so I took it upon myself to give up on the level of thyroxine. Little did I know this made me go down a very steep slope into very chronic illness.
Not once along the way did I have a doctor suggest for me to get back on the Levothyroxine. Being chronically ill for so long and begging everyone and jumping doctors just trying to find someone to listen, I felt ready to give up. Then I found a practice very close to my house that takes pride in being GP'S but leaning towards the more holistic nature.
I was feeling really badly one day and decided to go into their walk-in clinic and the doctor that helped me listen to me for the first time in years. She took my lab work, not as much as I would have liked for her to have taken on the thyroid part but my results were through the roof. My TSH is 86.500 and free thyroxine 0.18.
She desperately tried to contact me when she got these results in and I could hear the fear and her voice. She immediately started me on 25 micrograms and as before it is very hard for me to take. I finally started tolerating the 25 after cutting it into fourths for a week then half for a week and then to the 25. Anything above 25 sends me into total hyperspeed. It's terrifying and I know it's part of the process but it's so hard to deal with.
I am hoping some people with experience can please give me any info I'm welcoming at all that can help me through this process. Please share all your thoughts. I want to get healthy and get over this hump. I'm supposed to be on a much higher dose and I can't even imagine getting there. I think I'm supposed to go up to like 180 or something. I feel great I have tons of energy when I'm not having heart palpitations. I feel better than I felt in years really the only problems I'm having is the heart racing thing but it's so unbearable that it scares me and sends me to the ER.
I find it easier if I take my medicine in the evening. When I was just down to 25 I would fall 4 hours short and would be able to tell that I needed to take more. When I got up to 25 and then a half of that. I would be fine for a couple days and then it would just be too much. Sometimes only a day I would make it. Now I don't know if I should go back down to just the 25 or keep struggling on the same path.
Thank you all in advance for your help and please unload all the information you think might be useful.
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kjadmartin
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I'm totally getting a kick out of my wording using Google Voice. Levothyroxine came out as level of thyroxine. I left it because I figured you guys would get what I meant and I think it's funny. Just a side note on a typo!
I am replying because I am awake with similar symptoms right now and have just posted myself. I guess it might just be you and me at this time. I have not got a clue what my bloods are at the moment but pretty sure they will be terrible, one way or another. I see you are in the USA so you might be in a better time zone. I should definitely be sleeping.
Unfortunately, whilst reaching out to you I am not experienced enough to help you with solid advice. Hopefully someone will be along but as it’s a UK based site we might not get any replies for a good few hours!
I feel for you! I was up till 4:00 a.m. last night, wondering if I should deal with it or go to the er. From Reading past posts of others who suffer with the same thing, I hear people saying all the time just make it through it but I worry about my heart. It's so scary. I am close to 50 and I don't think it's the best for your heart.
I know when I lay down it seems worse but maybe it's just more noticeable because you're trying to rest. I hope you can get some sleep. I will say I did notice that drinking some Pedialyte seems to help because it hydrates you and gives you lots of potassium, magnesium and zinc. But that's just my own personal thing I don't know if it really is helping or it just makes me feel like it does. Who knows. Just when you think you figure it out it's something new.
A walk-in clinic for a holistic doctor! That would be so great to have close by.
Are you sure it is the levothyroxine causing the symptoms or anxiety about taking the levothyroxine? I am not doubting your reaction to the 25mcg., but just making sure which is causing the issues.
I hope you can eventually take a dose that treats your hypothyroidism, because it definitelyneeds treated. I completely understand starting or changing doses is not fun at all. The symptoms will more than likely pass if you can grit it out for a few weeks. I almost wonder if you would have fewer symptoms if you started on a larger dose. 🤷♀️
I have considered the higher dose thing as well. Sometimes I feel like that's the case then sometimes I feel like it's not. This medicine is so testy it's so back and forth you never know what's going on. You feel like you figure it out and then you don't. I know that my symptoms for when I need to take the medication are similar as to when I take too high of a dose. I feel like when I take too high of a dose it's a lot more extreme on the heart than when I need to take some. It's more like palpitations rather than a consistent rapid heartbeat.
And the walk-in clinic is an actual doctor they just taken to consideration a holistic approach before they jab all the medicines down your throat. Which is very nice, because prescriptive medications aren't always the first go to in my book.
Testy. Fussy as HealthStarDust has just put on my post. I am just in such agreement. I personally do not want to take the slightest too much or too little medication. I want to get it right but I do respond definitively to changes and now apparently to no changes, when I perhaps should have changed. The idea that we would ‘happily’ over medicate, as some doctors believe, is just nonsense. A walk in clinic sounds fab. I wonder if gets over subscribed? Even a ‘drop in’ centre could be a good idea. Somewhere to go when feeling Sh1t and you just know A&E is unlikely to be the place to help. I think the forum is acting as my drop in centre right now.
I don't know how it is in the UK but a lot of doctor offices here in the US will have walk-in clinic instead of going to the hospital for emergency care if you are feeling horrible. And there's no waiting. With insurance to get authorizations and I only pay a dollar co-pay. I'm grateful that I went there because I ended up finding a doctor that actually really truly listens and here's you out and doesn't just shove pills down your throat.
We do have the odd ‘Walk In Clinic’ but as far as I know they work regular hours only. No after hours, which seems to be invariably when I have the need! Maybe when I get better I could think about providing such a service?!? It would be particularly helpful if there was specialist knowledgable staff but where would they get them from? So far I have not come across a single medic I felt had anything like the knowledge or experience to deal with thyroid issues. We have to find out everything through the forum.
I understand what you are going through and perhaps my story can provide some useful information and comfort.
My GP immediately put me on 25mcg when I was diagnosed, but it caused a cascade of horrible symptoms and made things very much worse. I also ended up halving, going up and down with the dosage, then just taking a quarter - which was the tiniest fraction possible with the tablet before it crumbled. The problem is that once I started on 25mcg it created so many health issues that I was completely confused and it took quite a while for my body to recover.
Then I did a lot of research and found out synthetic levothyroxine may not be the best option. After consulting with my GP, I purchased the very expensive 'natural' thyroid hormone extracted from pigs from a specialist pharmacy in Germany. That turned out to be quite an awful experiment for me personally (some people however do benefit from T3 rich hormone extracts).
After a year of unnecessary suffering I found an endocrinologist who happened to also be highly regarded internationally in his profession. He confessed that recommended dosages are too high in the medical scene. If symptoms or bad blood tests don't change, doctors just keep increasing dosages, as if that's a magic bullet. According to latest research and insights he told me this trend was slowly reversing (at least among the better informed doctors).
In his opinion I was overmedicated with the levothyroxine. The sensible approach would have been to first do an ultrasound and find out the condition of the thyroid. He said, if there is little to no damage to the thyroid, then the treatment should start with a very low dose such as 6-12mcg. This allows for an adjustment of the body to the hormone treatment and then one can observe and slowly increase if necessary.
My ultrascan showed almost no damage to the thyroid. Since then I've stayed on 12mcg. Along with many other adjustments it allowed me to experience a regression after 2+ years: going from TPO antibodies of >1.800 to just >60 on my best days. TSH is around 2.8
Personally, I very much recommend to follow through with all the lifestyle and nutritional changes necessary to support the healing process.
Thank you so much! I agree with a lot of what you are saying and I have learned over the years to follow your body, mind and heart. With the guidance of a doctor of course but they are not the All-Seeing Eye. They are just educated with what they know and not all know a whole lot. I feel like I'm so pressured to keep raising my dose when I know I feel fine at a certain level. I can tell when I need to take it and I get relief instantly and I feel very good at a very low dose. It does wear off just shy of 24 hours so I find myself taking a little bit earlier each day but I'm fine with that cuz I do it on an empty stomach and I feel like it's helpful. I don't feel like it's helpful pushing it up because it just makes me feel like I'm going to die. If it wasn't my heart it was affecting I wouldn't be so concerned, but my heart is important to me.
Again, thank you for sharing your story. It was very useful and reassuring.
I definitely agree with much of what you say re: dosage. There is just not the research being done to back this up. Doctors definitely think ‘more is more’ and my experience is that is far from the case. However my sense is that many people will need high or higher doses too. It’s good your doc suggests that if there is little apparent damage to the thyroid, going in with a light dose is - let’s be honest it’s novel!
I think you are absolutely correct Second Angel. That’s a much bigger problem for those who need that and that seems to be many! However within good care for patients, there are some for whom this is not the right thing. I think I might be one of those. As we learn all the time, it’s such an individual thing and if our doctors were even half way aware of this we would be getting a much better service indeed. Not disagreeing on your point at all!
Very interesting, 🤔 my story is a bit different in that I don't have a thyroid, total thyroidectomy in 2019 due to graves thyrotoxicosis.
I was immediately put on 125mg levothyroxin the first couple of days I really didn't notice much but on the 4/5th day I developed stomach /bowle issues by day 6 I had bad cramps with very loose bowels and felt sick.
I also had very hyper symptoms (and I know all about hyper symptoms) I saw my surgeon about 3 weeks later for blood work, he noted my hyper symptoms but ignored my bowle/stomach issues.
I commented I was still very hyper, he said yes you appear to be, but that will be because you had very high antibodies these take around 3/6 months to leave the body.
On another visit again I was hyper with bad stomach /bowle, nausea , he decrease my meds to 100mg and noted I didn't appear to be over medicated on last bloods🤦♀️
I suffered for around 3 months on levo, I saw my gp and told him about the stomach /bowle issues he dropped me to 75mg, he just told me to continue as the side effects would ease, then I found out these tablets contained LACTOSE I'm lactose intolerant and have colitis 🤦♀️ got them changed to lactose free but NO thyroid medication I've been on as ever agreed with me and I've struggled since 2019.
I'm on T3 (25mg) and still no change with bowle/stomach issues, I just can't seem to increase without awful side effects, also I have a big problem with absorbtion, but no endo or gp will listen just keep chopping and changing the thyroid medication hoping to get a different out come 😠 I've pulled my hair out thinking why can't I stomach these medications 🤷♀️ I've thought about sensitivety to the medication 🤔 I can't take aspirin, ibuprofen, antibiotics, certain medication give me awful symptoms.
I'm at the end of the road now, a few weeks ago I came of for 2 days all bowle pain cramping and loose bowels, nausea went , I felt like I'd stepped of a washing machine on spin cycle, best part was I could eat without having that sickly feeling.
I had to go back on them and started on 10mg even after this dose I started with symptoms but pushed on to 25mg, I was taking 20mg in the morning 5mg at 6.30pm, I tried going down to 20mg by splitting it into 5s and trying to see if that helped, it's not, I really think I'm hyper sensitive to thyroid medication 😩.
I'm due a blood test next week, the gp I saw told me if my colonoscopy I had done last month was clear (no cancer) because what I'm passing looks awful🤮 she would need to send me back to an endocrinologist still waiting for that to happen 😠
I'm getting nowhere with my surgery, and trying to get an appointment is near hand impossible 😠
when you say it’s hard to take, what symptoms are you having?
If I stay at a low dose like 25 or under I might get the occasional heart palpitation or I can feel like my heartbeat throughout my body, but for the most part I feel great! I have a lot of energy a lot of my old symptoms of feeling just horrible all the time are gone. No brain fog. I might get a little bit of achiness sometimes in my joints but not as often as pre-levothyroxine.
Anything over 25, which I've only made it up to 37.5 max, I am good for the first day maybe two and then about an hour or so after I go into rapid heart beat Non-Stop for hours. Beyond that I feel pretty good. I know it could be worse but that's really my only major symptom that I'm having a hard time with is the heart. Sometimes I get maybe weird pains in my arms but it's very light or I might get a light headache or a pounding throbbing, but not bad.
Then, a few hours before it's time for me to take my medication, like right now, I start to get heart palpitations and a little bit of a rapid heart rate but not like after I take it at a higher dose.. this goes away after I take it within the hour and as long as I'm at a low dose I'm good but anything at a higher dose will set me into that rapid non-stop crazy really hard heartbeat.
OK. I wonder if your adrenals are playing up. If you read my bio you might find some useful information there. After many years, I have discovered that I haven’t been able to successfully metabolise thyroid hormone because of my low cortisol. You sound like you could be in a similar predicament to me. I’ve collected a small selection of quotes from reputable books that explain what low cortisol can feel like when we try to introduce thyroid hormone - maybe have a read and see if they resonate x
Do you know if it's helpful to take bovine adrenal glands? I can't find any information on it if it's safe to take with level thyroxine and if you don't actually need it is it hurtful?
yes - “ACE” adrenal cortex extract can be very helpful. You’d need to get a cortisol saliva panel first to ensure you do have low cortisol. ACE can be used for moderately low cortisol, otherwise hydrocortisone is used.
When people run short of thyroid hormones their body tries to keep them going by producing extra cortisol (which is one of the stress hormones). It isn't a good substitute for thyroid hormones but it helps.
When thyroid hormones are prescribed and taken the cortisol level ought to reduce. But if cortisol has been high for a long time it might take a long time to reduce. Since you have been short of thyroid hormones for 14+ years it could take a long time for your cortisol to drop.
Another issue is that some people can't keep producing extra cortisol indefinitely, and their adrenal glands may gradually perform worse and worse and the cortisol gets lower and lower and lower. Having really low cortisol and really low thyroid hormones is a double whammy that makes people feel really, really ill. They will feel physically weak and they will not tolerate stress well at all.
The combination of (new to you) thyroid hormones in addition to high or low cortisol levels is going to make thyroid hormones difficult to tolerate.
People get over this problem in various ways. One essential is to get your nutrient levels tested and optimised. What works for one person might not work for another.
1) Almost everyone with thyroid disease ends up with low nutrients. Low nutrients reduce tolerance of thyroid hormones.There are various nutrients that need to be tested and optimised. We usually suggest on this forum that people get the following things tested :
Vitamin B12
Folate
Vitamin D
Ferritin (iron stores)
It is worth getting an iron panel done (also known as iron studies). This consists of serum iron, transferrin saturation %, TIBC (Total Iron Binding Capacity), Ferritin, CRP (C-Reactive Protein). CRP is an inflammation marker. If inflammation levels are high it can make ferritin levels look artificially good or even high.
Getting a Full Blood Count (name in the UK) or Complete Blood Count (name in the USA) done might be helpful as well. It will show, amongst other thing, if your haemoglobin is low. Haemoglobin is often used as proof that people are anaemic if it is under range. But note that iron deficiency can occur with or without anaemia. It needs treating in either case.
Other tests that may be helpful - zinc/copper/selenium/iodine (always use a non-loading urine test for iodine - other tests are rubbish)/magnesium.
2) Getting a 4 - part saliva cortisol test done is well worth it (don't bother paying for more than four parts). A saliva cortisol test sometimes includes testing DHEA which is useful. A blood cortisol test might be useful too, but I must point out that cortisol in blood and cortisol in saliva aren't testing the same thing so don't expect the results to be similar. I've written about this before :
3) You might want to try different brands of thyroid hormones, and different forms of thyroid hormones, although some forms are very difficult to get hold of because many doctors don't like prescribing anything other than Levo. As well as Levothyroxine (T4) there is Liothyronine (T3) and NDT aka Natural Dessicated Thyroid which contains both T4 and T3. Some people do well on a combo of Levo (T4) and Lio (T3).
I know I have low iron I've always been anemic so I have been taking an iron the opposite time that I take my levothyroxine. I've been having a hard time absorbing everything pretty much that you mentioned for a long time so I'm pretty on to those as well.
You mentioned adrenal, and I have read about that as well. Do you know if it benefits to take bovine adrenal? That is something I do have on hand here, but I wasn't sure if it would benefit or hurt to take it. I've tried to find some answers online but it doesn't seem to be a topic that's discussed much. I see a lot talking about how if you're adrenal system is not functioning very well it could be very damaging to take the tea for. But I don't see a lot about taking the adrenal caps. If this is anything you might know something about, I would be grateful to hear it.
HB makes an excellent point that iron can also create the issues you’re suggesting - anaemia needs to be addressed as a matter of urgency if you hope to get your system using thyroid hormone correctly x
I take iron everyday. I'm slightly low at this point but I'm pretty decent. I've had blood transfusions in the past because of my anemia. But I'm doing much better these days.
Do you know if it benefits to take bovine adrenal?
If you have low cortisol then it might help. But if you have high cortisol it will make you feel dreadful. Unfortunately using symptom lists from the web isn't reliable enough to be sure, a saliva test is essential.
About 10 years ago I guessed my cortisol was low. I did a saliva cortisol test then started taking an adrenal glandular because I was so sure my cortisol was low. It made me feel almost homicidal, extremely bad-tempered, while also making me even more insomniac than I was usually. I also sweated like crazy.
When I got my test results it turned out that three out of four samples were over the range and the remaining sample was about 90% through the range, i.e. very high in range. I've never taken a glandular since, and I've seen others guessing badly since then, so I'm not alone in having got it very wrong.
That's the scary part. And it is like that with everything. It's not a guessing game when it comes to your health. Being low is the same symptoms almost as being high. So it's almost impossible to guess. I have a thousand lab results here. Do you by any chance know the code for results when they test for cortisol? Does it say just straight up cortisol?
The point about testing B12, folate, vit D and iron is absolutely spot on. I got a recent thyroid panel done which was perfect (for me) and confirmed Hashimotos at last (after 13yrs of being hypo, UK GP wouldn't test antibodies), cortisol was fine. However, I STILL had a host of symptoms which I would normally think of as thyroid related. Further blood tests showed B12, folate, vit D and iron (ferritin) had all tanked.
I don't know why the B12 tanked, I suspect malabsorption issues, but I've started taking iron tablets, high strength folate, high strength VitD3/VitK2 and magnesium in prep to get my levels up before I tackle the B12, as healthy iron stores are a must before treating. Low B12 and low ferritin can certainly cause palpitations, as I've found out and I can vouch for how truly awful I feel atm.
The only other thing I would add is, could the OP be sensitive to an ingredient in the Levo? Have they tried different brands?
I wish everyone good luck with their thyroid journey, it's hard work and I'm glad I discovered this group of knowledgeable people, be well x
I don't have time to read all the replies so apologies if I've missed something. You must get TSH, fT4 AND fT3 measured. It's possible your pituitary is over active producing too much TSH causing your thyroid to produce a lot of T3. This may not be so but by measuring fT3 you will know for sure one way or another.
Oh my gosh - that's a predicament! I too am uploading super slow because of heart Arrythmia. Though my levels were nowhere near yours. Still this might help. I use this technique if my heart gets bumpy or into tachycardia (racing). The idea is to slow your breathing rate down to 6 breaths a minute. A few others here have told me it helped them.1. Sit or lie comfortably so that your tummy can move easily when you breathe in. If you're lying down, this is easier on your left side.
2. Take a breath in.slowly through your nose. I usually count a slow 2. Let your tummy relax when you do this so it moves out gently.
3. There is a natural pause for most people after the inbreath
Try to tune into it but don't force it.
4. Let the breath out again all in one go - don't worry that you'll be out of breath - there's always air in the lungs right up until our last moments
5. Don't be surprised if you feel like another pause after the outbreath but again - don't force it. Keep tuning in either to the feel of the air moving through your nostrils or the sound.
6. If you need to breathe out through your mouth purse your lips slightly as it helps to feel the breath and know we're in charge of it.
6. Repeat.
Typically your breathing rate will calm and slow down. You may even feel like you're about to drop off to sleep.
This technique is one of many used by breath practitioners to help calm our systems and regulate breathing. I have often got my HR down by 15-20 BPM using this technique and sometimes seen my AF off. Also helps me if I cannot go to sleep
Wow! I love this website! I really find the community ever so helpful. Thank you so much for taking the time to share this with me. I think I will use it even just to calm myself at night when I lay down even if my heart rate isn't out of control. I tried it just standing here in my kitchen and it really calmed me.
Just in case it helps, do you drink a lot of caffeine? I’ve gone fully decaf and I’m currently working my way back up to 100mcg Levo after having rapid heartbeat. I’m hoping that I can now tolerate 100mcg without the influence of caffeine as well 🤞
I use to get very hyper feelings a couple of hours after taking my dose of levothyroxine. At first I didn’t know what was happening I use to think it was some mad adrenaline rush. I’ve since learnt that my body can’t cope with a full dose in one hit. So my private only endocrinologist switched me to liquid levothyroxine and I decided to split my dose. I now get it off the NHS. That worked much better for me. I also found out I needed T3 liothyronine medication as I’m a very poor converter of T4 to the most important hormone T3. I also split my daily dose of that. Why don’t you try and split your daily dosage throughout the day. Then try and get it up. With a TSH as high as yours your body is screaming out for thyroxine to make your body work as it should. Getting the medicine in you is the key I feel. Ask if you can switch to liquid levothyroxine then you can manage splitting your dose very easily plus as it’s liquid form it has a higher percentage rate of absorption. It’s worth a try to even split tablets if it’s going to help you.
I'm about to take my dose now. I'm going to try that. From what I've read it's what you take throughout the week not so much how much you take and one time. I'm in the US and I'm not sure I've heard of liquid levothyroxine. I wrote that down on my list of things to ask my doctor when I go in in a week.
I have been trying so hard to research natural alternatives here in the us. I remember quite a few years ago that it was banned. Good old USA doesn't like anybody having any natural alternatives.
Armour isnt banned, just hard to get Drs to prescribe because they’ve been discouraged. Listen to the Dr Tyna show (podcast) she explains it on episodes about thyroid
with long standing untreated hypothyroidism Doctors are always recommended to start at small dose and increase extremely cautiously .. because otherwise the increased level of thyroid hormone may come as rather a shock to a heart that has got used to working at very low levels of thyroid hormone .
So i think your instinct to go very slowly, at least for the first few months, is probably right ~ follow your instinct and allow the body enough time to get used to very small increases before increasing further .. let the body tell you when it needs more , rather than pushing it faster than it wants to go, is perhaps the right attitude .
try splitting the dose over the day into 2 (or even 3) smaller doses rather than one, if you can find a way to fit them in far enough away from food/ iron etc... but keep things consistent , the body will want to know what its getting and when , so try to keep dose times the same each day.
edit . just adding links to some posts with info relating to how thyroid hormones affect the heart :
Hellva has a list of thyroid medications that show the additives…. I had problems with “acacia” this stuff is pure poison and sometimes you need to look at your food choices I noticed when I eat more then one slice of bread my palpitations rage.
Hi kjadmartin
Used to have regular heart-pounding until I started DTE.
Early days of medicating but recently had a heart pounding episode. Was after I hadn't eaten breakfast the usual one hour after morning dose. Think I ate three hours later which meant a fasting total of 15 hours or so, and guessing no food to slow absorption brought on the heart symptoms.
I have been medicating at night a few hours before I go to bed. It's not a problem on the day is that I don't get heart palpitations. I eat and bread is not often one of those things. I did see that fiber could be an issue and I eat a lot of oatmeal.
Hi, I just want to mention that if you are a woman and you are 50 that perimenopause is also notorious for heart palpitations that send women to the ER. I don’t know that this is a popular topic here so sorry if I’m saying someone wrong. I’ve had many friends without thyroid issues who had palpitations in peri. The adrenals, blood sugar, and more are all affected by this hormonal change. I’m sure that most of your symptoms are related to the medication because you notice it in conjunction with the meds but it’s possible you are extra reactive right now. Also, check ferritin and not just iron. Docs here in the US won’t do this if you don’t ask. Mine was super low and my iron is fine. Also, I think we are recommended to do thyroid tests before taking our med or eating. That makes a difference for me.
Wow! Yeah I haven't gone through menopause yet but I'm just waiting for it to happen. I'm sometimes thinking maybe I'm premenopausal but who knows with all the other issues I got to deal with. Thank you for that bit of info.
Everyone has been so exceptional, with all the information. I have read every single word of every single person's post, and it really is comforting to have a community. This is such an irritating sickness to have, because people look at you like you're crazy or you're imagining things half the time. I got to the point that I just kind of keep all my issues to myself and try not to discuss them with anybody. This has been such a blessing, even if you guys are a million miles away.
AuthorJAR ... to 'alert' someone that you have replied to them you need to use the 'Reply' box that is directly underneath their comment . (they wil then get an alert to let them know , and your reply will show as "AuthorJAR - in reply to... )
i suspect your reply was not meant for kjadmartin ~ they will have been notified of your reply because it's on their post , but anyone else will only find your reply by chance .. ask again underneath a reply from whoever you were asking about cortisol .
(p.s if you want to see another members profile page+ their previous posts eg to find information .... you can click on their name / picture )
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