I have hypothyroid 27 year old male with possible hashimoto have a small goiter also, was on just 25 of levothyroxine and was just upped to 100 last week when they found goiter with them feeling and with ultrasound also its had to swallow like theres a lump in my throat sometimes I know doesnt make since to up me so fast from putting me on 25 in December to 100 a month later i asked why so much so quick but he didnt seem like it matter because I was young, my main severe symptoms are air hunger breathlessness shortness of breath all the time 24/7 even at rest/just sitting doing nothing sometimes so bad feels like my heart skips a beat and sometimes like I'm just about to pass out. Heart pounds hard sometimes fast after eating sometimes or even on the smallest activity like getting up and going to the bathroom or just randomly or also sometimes beats slowly and weak. Also HORRIBLE weird head feeling lightheaded dizziness tingling in head with pressure like headache my head is so messed up sometimes I have to lay my head down for a little other times puttimg my arms and hands on my head for a little pressure which some how helps the tiniest bit, more symptoms are weight gain 25 pounds in 2 months, thin dry hair, dry skin, constipation , muscle and joint aches and pains, headache, brand new sleep apnea never had before, nerve pain/tingling, muscle spasms and many more, I would like to find a good doctor that believes me and knows more about my thyroid I have a sorry to say but idiot endo doctor that will only go off of tsh tests and wont do a full thyroid test and doesn't believe my air hunger/breathlessness or my heart pounding is a symptom of my low thyroid which with my research I am 1000% sure it is without a doubt along with the rest of my symptoms my family doctor and hospital er which been to plenty of times with a 4 night stay in the hospital seen heart doctor, lung doctor, neurologist, denied me to see a endo while there because the doctor that was there said she shouldnt need a endo she could take care of it because it wasnt my thyroid, you name it I saw it, everything looked ok I guess even tho I was in the worst shape of my life with the severe symptoms I listed they want to say I'm having anxiety attacks and put me on xanax i know I'm not having anxiety or panic attacks when I'm just sitting there calm and just cant breath at all yea maybe I start getting anxious because I cant breath 24/7 and cant stand it but I'm a pretty calm person usually I just cant stand it anymore i really need help thanks alot I need a doctor that is up to date on his thyroid information I'm on levothyroxine just upped my dose to 100 but doubt this will do much (hope it does) I just need a doctor that understands and is willing to do full tests and knows my symptoms are from my thyroid thanks I need help I cant live like this
Recent test results in December done by my GP not my endo around when I felt my worst was =
Tsh - 10.130 range ( 0.350-5.500)
Free t4 - 0.90 range (0.80-1.80)
Free t3 - 3.1 range (2.3-4.2)
What should I do? Should the upped levothyroxine help? Thank you so much to any and all replies I really appreciate it!
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the difference between you and me is two years only. It is like me from 2017 had written that post.
stick with me and keep me informed as I will you if I find something that works.
Immediate suggestion:
- take the stress out as much as possible
- get an ultrasound on your thyroid
- look into ferritin, b12, vitamin D and iron levels. you might find a service online if your doctor think he knows you better than you know you.
- be calm. your anxiety will speak anxiety to your doctors.
- change your diet if you have digestive issues. less diary and no gluten if possible.
- keep a journal of your food to figure out what screws you up and in what ways.
- beware caffeine
- alcohol
- msg
- nightshades
- almonds
- don't take iodine supplements unless you are sure. it can make things work.
I am still fighting it but this is what I picked up so far. Also check your antibodies because you probably have hashimotos which means your body has a hard time clearing toxins. So limits toxins and sleep when you need to. You might be in for a long walk here but we are together on this so let's stay in touch to because two brains are better than one and a community of them is what is needed when your symptoms fall through the web of standard medical conditions.
also have some basic blood tests, full liver panel and tests to rule out other autoimmune conditions.
What changed with in the 2 years where you dont maybe feel as bad as I do now? How did you get your vitamins and minerals tested? I take a real strong probiotic that I have to keep in the refrigerator that also is like a multi vitiman with I think 150% daily value of vitamin d and 167% daily value of vitamin b12 alond with b1 and b2 and 33% daily value of selenium very low magnesium i think 4 % daily value no iron but that's the amount with only 3 capsules says you can take up to 9 a day I take about 4 or 5 and yes i try to keep it 4 hours after I take levothyroxine, thanks ! I actually have a hepatic or (liver) function test done when I was in the hospital do you know hoe to resd them I could post it thanks alot
I have peaks and troughs. My general robustness has improved but I cannot say I am completely better. These multivitamin supplements take time and for a lot of them I am still finding the right balance. I wouldn't know about your multivitamins but my GP eventually tested tobsee my absorption rate for a number of nutrients. I will also look into testing online once I am back from vacation.
Actually the comments about rT3 and the amount of T3 you actually need was more informative than my comments. I currently live in Japan and they said that they don't administer T3 because it has lower longevity in the body than T4 so can pack a punch then leave you undermedicated. I wonder how true this is and how much it is overstatement.
having read this again let me just say you need to have your own back on this because this is how doctors are trained and it comes from the epistemological philosophy of science. I'm not here to lecture but they're basically given material as scripture and anything that is not recited therein is considered dissociable and so they conclude another aetiology. This of course is annoying because you have all these tests and they all say the same thing. then you go on this merry go around and when you've seen everyone you find that you've fallen right of the ride and have nothing and no-one to help you.
now you can have a look at alternative medicine, functional medicine and Chinese herbal practices but because of a tradition of 'try-and-see' and induction you find that there is a lot of swindling and quackery. You have to be aware of this and proceed with caution. That said there are benefits to be find but they work for different people. One thing to consider is low stomach acid. I am not sure with myself but I have found when I take a digestive supplement, there is slight relief. also if you have this problem you could have nutritional deficiencies which can have a cascading effect throughout the body. Also stock up on asthma medicine if yiy have asthma.
One possibility also is Roemheld syndrome which is a sign of central nervous system dysfunction which can happen with an undermedicated thyroid.
Others try another form of medicine but I have yet to try that. Finally, your way out of 'normal range,' which has to be remedied. If you are worried that your goiter is causing breathlessness then ask for a CT scan to see if it is blocking yoyr throat or thorax. But breathlessness could be due to this, anemia, nutritional deficiencies, muscular atropy or just general weakness (which seems a shout if your heart has been affected).
Take your levothyroxine on an empty stomach and know that it takes time to come down. You must check your antibodies. Even though your doctor will have been trained to think they don't matter, just remember the academic world went thinking most of your DNA is 'junk' and doesn't matter for over 50 years. It does matter and you should know if it is autoimmune or not. Why? Because if it is, you have to make lifestyle changes to reduce inflammation and give your body the support it needs.
I can't promose you anything because I'm still in the thick of it. However, you will get nowhere if you just sit and believe everything your doctor has been trained to think. You need to be scrupulously cautious and skeptical. But if you are, you might just find a way to make yourself feel better. We're all here to help with that.
It reads very much as if you have simply been kept undermedicated, and your higher dose of Levo will help address that. You were started on too low a dose - for adults below 50 yrs of age, with no cardio issues, the starting dose is 50 mcg. Starting on too low a dose is often counter-productive as it has the effect of interrupting the normal production of your endogenous hormones via the negative feedback mechanisms in play, so rather than increasing the total available to your body, you may in effect, have had less than before taking the Levo. Generally you should be tested 6 weekly and dose adjusted upwards in 25 mcg increments as required, until you are in theory euthyroid and symptoms have abated. As a young, presumably otherwise healthy person, you are unlikely to come to any harm by jumping to 100 mcg, but if you feel temporarily over-medicated you could reduce to say 50 mcg for a while, and increase more gradually; but otherwise, there's no harm sticking with the 100 mcg. Levo isn't a quick fix, and after each dose increase, takes about 6 weeks to reach a steady state in your body, although it is of course, benefiting you immediately - but not everyone notices rapid change, for some the improvement seems more gradual.
Yea I am just taking half of the 100 mcg so 50 mcg of levo for about a week or 2 then I'll up it to the 100 just in case then I get more blood work in about 7 weeks now. Yea the 25 definitely didnt seem to he helping seemed like as soon as the endo I seen for the first time seen I had a goiter he quickly wanted to up it to 100
You’re describing classical symptoms of hypo metabolism due to hypothyroidism.
Unfortunately, physicians sleep through, or otherwise fail to absorb the part of medical school on how the thyroid produces a hormone (T3) necessary to powering every cell in the body. Underpowered cells results in a cascade of failures in the systems (muscle for one example; malfunctions in digestion and nutrients absorption for another) and your highly-trained medical professional forgets to consider the thyroid, but focus narrowly on individual symptoms of hypothyroidism and look elsewhere.
And medical textbooks don’t even cover reverse T3, because its action is poorly understood (but people who have experienced its deleterious effects know it well), so the rT3 test is seldom included in thyroid panels. If you feel worse after increasing the LT4 (and you can always cut the 100 mcg tablet in half) for a week or two, it could be impaired conversion. There are numerous well-studied genetic polymorphisms that cause high production of rT3 from levothyroxine, but physicians easily overlook failure of their treatment.
The reference ranges for standard thyroid tests are skewed by large numbers of undiagnosed hypothyroid cases. The tests suggested here fit 70-80 percent of people, so even if those tests suggest all ok with the thyroid, it could still be just that. It could be they have to treat you with NDT or LT3. But that’s a road they resist considering.
My free t3 seems to be in pretty good range right? I thought it would be the 1 that would be off most because of my heart problems and breathing problems but it seemed to be the only 1 in decent range or should it be at the higher in of the scale? Thanks!
Everything is relative, and we don't know if there is rT3 overpowering it. For months, my endocrinologist was only testing the things you had tested. I was waking in the night choking and feeling like I was suffocating; high blood pressure; pulse as low as 47 beats per minute; at times during the day, so fatigued I could barely walk outside for a few minutes; muscle spasms; tingling in extremities; loss of sensation in toes and fingers.
Your hypothalamus takes T4 and deiodinates it for your brain; other organs convert T4 to T3 to power cells throughout the body; this action takes place on a circadian rhythm. The production of TSH, T3 and rT3 all have been seen to follow a definite circadian rhythm that's unique to each person; your personal requirement for T3 is also unique to you. Whether it's within the reference range is irrelevant if it's not enough to power your cells, and what you're describing is a body with insufficient T3. The tests that have been conducted give an incomplete picture and a false sense that everything is "ok."
Clearly, from what you are describing, things are not ok.
Dr. John C Lowe, who treated fibromyalgia patients, and was himself profoundly hypothyroid, discovered that the symptoms you are experiencing are due to hypo metabolism, due to hypothyroidism. Here is a link to some of his research:
What if there is rt3 overpowering it I thought if your rt3 was off it was just bad conversion I thought that would mean my t3 would be more off than what it might be or does rt3 being off mean more than that, does your body do stuff with the reverse t3 other than just sitting in your system I thought rt3 just was t4 and t3 that wasnt being used I ddint know that it could be making you sick
Reverse T3 is a poorly understood byproduct of deiodination that is known to block the conversion of T4 to T3 (academic.oup.com/endo/artic....
Reverse T3 has a relatively short half-life in the body but some people produce more of it than others, due to genetic polymorphisms. Too much made me severely hypothyroid, despite having adequate levels of FT3 and FT4.
If you never measure your rT3 you will never know if you produce more than "average" and if it is blocking conversion and creating problems with your energy metabolism. When my rT3 began to climb, due to the endocrinologist prescribing larger and larger doses of levothyroxine, the FT3 and FT4 looked fine but the TSH started to go up, finally going above the normal range. I felt awful throughout the process, but really felt I was going to die by the time the TSH began to point out a problem somewhere.
Perhaps this is not your problem, but you will not know unless you check the rT3. Checking involves measuring rT3 at the same time as FT3 in a blood draw. When you receive the results, you look at the ratio of FT3 to rT3, doing a simple division, ignoring the different units of measure. A result that is a small number is an indication of too much rT3. You can have FT3 within laboratory reference range that is normal but if the ratio of FT3 to rT3 is .11 (for example) you would feel the way you have described to us here. At .2 you would start to feel better. The units of measure at your lab might be different, so the results might be 1.1 versus 2.0, or 11 versus 20. There are articles out there discussing the ratio and the magic of why you don't need to have identical units of measure.
One problematic DIO1 polymorphism is known as D1-C785T, or rs11206244. Medical journals noted that healthy people who carry this polymorphism had 3.8% higher FT4 and 14.3% higher rT3 levels, resulting in a lower T3/T4 and T3/rT3 ratio and a higher rT3/T4 ratio. I found this at the Journal of Clinical Endocrinology and Metabolism, August 2008, 93(8):3075–3081 (Paniquer) and
So In my case until I can somehow get a rt3 test done of I can talk 1 of my doctors into it not sure if I can but until then, I'm obviously hypo and was undermedicated the upped dose of levothyroxine to 100 could work for me ? I just have to wait and see right?
Right. If you take more and feel better, and do not feel worse after a while on it, then the bigger dose is working. The dosing is calculated by lean body weight, so the typical person can take up to 125 mcg daily.
I started at 25 mcg LT4 a year ago and felt well for a few weeks and then unwell. The tests came back normal. I had the dose doubled to 50 mcg and felt better for a while and then worse. The next step was 75 mcg LT4 with 10 mcg T3. I was struggling. The endocrinologist wanted the T3 cut back to 5 and that's when I felt like he was killing me.
If you're one of the lucky normal ones, the 100 mcg will make you feel like a new person. Your body will be able to absorb nutrients from food now. No more shortage of stomach acid. All those things at thyroiduk.org.uk/tuk/relate... are alleviated when proper hormone replacement.
Rockypatg, I am just redirecting a comment i made above here because I wonder if you could provide an answer for it.
Best wishes,
Actually the comments about rT3 and the amount of T3 you actually need was more informative than my comments. I currently live in Japan and they said that they don't administer T3 because it has lower longevity in the body than T4 so can pack a punch then leave you undermedicated. I wonder how true this is and how much it is overstatement.
Hi, interesting question and interesting situation. Yes, the half-life of T3 is 24 to 36 hours, but if you take it daily you have enough. People take it daily for years. There have been studies:
My endocrinologist was terrified of using it, but he let me have some 5 mcg tablets with 50 mcg of LT4. I experimented with it and discovered that it can be volatile, but the effects are short lived. If you take too much, it will cause your heart to race, but the effect wears off within 24 hours. When dosing, start with 5 mcg and work up in 5 mcg increments. If replacing LT4 with T3, I found a study where they replace 50 mcg of LT4 with 10 mcg of T3, and that is how I managed my situation myself, when the rT3 was overwhelming me. I then reported the good results to the endocrinologist, who now lets me manage my own condition in between visits.
Blood tests need to be done on two week intervals when working with T3. I have FT3, rT3, FT4 and SHBG tested each time. The endocrinologist is learning from me, but I did overwhelm him with my research, so he knows I'm not his average patient.
The pharmacist where I trade was quite familiar with people who cannot convert LT4 well, and they dispense quite a bit of the 5 mcg and 25 mcg tablets.
This is all very interesting. Would you believe that in Japan they don't measure rT3? I can't remember how it is in the UK other than having to fight tooth and nail for anyone to believe me or to take the measured risk to actually help me. It is the same where I am here; a lot of doctors are afraid of T3 and the Thyroid Association outright bans its prescription. Now, if I were to go down that route, and I find it very convincing, I would definitely prefer a compound mixture. I'm not sure how to do this and if I do, it would appear I'd have to do it on my own. So all this information is extremely useful.
I take supplements and do lifestyle changes. This improves my overall health so I have robustness but it does not address the issue head on. I'd have liked to measure my rT3 first before doing it, but that seems impossible. And blood tests every two weeks seems unlikely. If I were to do it, I'd have to lower my T4 supplements and add T3. The calculus here seems a little tricky too. The link you sent on Fibromyalgia strikes me as very convincing.
So to add the comment (above or below?) that I already sent, I guess the thing I'd need to know is, other than T3 shortage lifespan in the body, what is it that makes doctors so tremulous about administering T3? The link on Fibromyalgia was fascinating but never (though I only skim-read up to now) elucidated why it is that while the findings are valid following the epistemological tradition of science as it is today, the medical community has ignored it. I just wonder what are the concerns about using it that means an entire industry would prefer to leave patients in absolutely appalling health rather than help them. I could talk about money-making and all of that but I think it rather misses the point because the NHS does the same, and T3 is not a cure but treatment all the same. So, it seems like there should be a valid explanation as to practitioner's, and more importantly, thyroid specialists', reticence to explore T3 with more conviction.
1. Resistance to trusting patients to adhere to a daily schedule of taking the hormone; track record of poor compliance by patients
2. Sales representatives for LT4 promote it heavily and persuasively and their manufacturers have bigger, more insatiable sales goals.
3. Levothyoxine has been recognized by the Thyroid Association as the standard of care. It’s easy to prescribe and there is much research available on its effectiveness.;
Not so for LT3. Thyroid textbooks teach the use of LT4 (I’ve read them; the authors omit discussion of liothyronine and the reasons for using it).
My grandfather used to occupy his mind in retirement by doing calculus in his head. The calculus of replacing levothyroxine with liothyronine is as simple as Grandpa's calculus in the head.
I found a study in Houston where they replaced 50 mcg of LT4 with 10 mcg of LT3 and saw what happened. That is what I did, and I felt better right away. The blood tests are verification, but you can tell mostly from the easing of the many symptoms of hypo metabolism. I mostly go by my resting heart rate.
There is an established ratio of mcg hormone per kg of body weight. I could never take anywhere near the standard rate of 2 mcg per kilogram for levothyroxine, and I only need 0.2 mcg/kg of LT3.
The common dosing ratios are shown in a table in this article, which is about substituting LT3 for LT4. ncbi.nlm.nih.gov/pmc/articl...
The NHS gives as a primaryreason for recommending withdrawal from LT3 and moving patients to LT4 the absence of studies showing its superiority or even its effectiveness compared to LT4. (mm.wirral.nhs.uk/document_u... The studies that have been done were poorly designed. They asked patients what they preferred. They did not record and compare the signs and symptoms of hypothyroidism before and after administration of LT3. They never measured rT3 because their textbooks don't mention it, or mention it in passing.
A minority of people require LT3 to be healthy, compared to the hundreds of millions who are on LT4 and regarded to be enjoying successful treatment. This creates an argument that everyone should be able to get along to LT4. The problem is that failure of treatment is easily overlooked, and those deemed healthy via simple lab results within reference range, may not be healthy. Instead, they are convinced by their doctors that the awful symptoms they still have are something other than hypothyroidism. They're told they have a leaky gut, but not told that the leaky gut is due to hypo metabolism due to their hypothyroidism. THey're told they have inadequate stomach acid, but not told that stomach acid levels fall with hypo metabolism. They're told they're just anxious and depressed, but not told that the anxiety and depression are typically due to hypo metabolism due to hypothyroidism. All because the actions of the thyroid gland and its impact across all bodily systems are vastly under appreciated and overlooked. Most people, doctors included, would say the heart is the most important organ in the body, but the heart will not keep beating without thyroid hormone. It won't function properly and fully without the right levels of T3.
Goodness me in all the four years I've been looking for answers (I have started a new job and recently become a father...) I have never found such well cited and reasoned information. Perhaps it won't help me in the end. And far be it from me to put anything on your shoulders. Nonetheless, this is extremely enriching stuff.
I have been to the doctors so many times and told 'it is unrelated' for whatever I say that I learnt the only way to get them to listen is to literally read the textbook symptoms and say I have them instead so at least I can feel better with an increased dosage of T4. It is difficult to see how I can square this information with my doctors who run on military discipline to the standard codes of practice (which is by no means a bad practice when the codes are good...)
Personally, I suffer from terrible digestion and dysnpea, slowed heart rate, and inflammation, and am constantly told to consider another aetiology. Years later and literally thousands of pounds and worse, hours and hours, down the drain, I have found that I'm as fit as a fiddle except the antibodies impairing thyroid function. But it is as you say, the thyroid is the gear box to the whole engine and I'm trying to go uphill in fifth...
Thank you for this. I may take the liberty to ask you more questions should anything I've failed to consider here crop up later. But the information you have provided here is utterly fantastic and may change my and/or the poor fellow's life who started this thread in the first place.
I hope it does improve your lives. We all deserve to have the best health possible when treatment is available The military should appreciate this, because the underlying philosophy of nationhood (and the military) is that the population must be healthy and strong and educated to protect the homeland against all enemies, foreign and domestic. Leaving people sick with hypothyroidism undermines security, besides being immoral.
But it really all seems to come down to education, and the way doctors, and endocrinologists, are trained and how that training only glances over actions at the cellular and genetic level that are basic to health. This ignorance leaves them making the same ill-informed guesses as their predecessors.
Sadly, much was known about hypothyroidism in 1898, and reported to the Royal College of Physicians by Dr. William Ord: ncbi.nlm.nih.gov/pmc/articl...
Somewhere along the calibration of risk and action, these associations do make the decision to leave a group of people high and dry, sometimes inevitably and sometimes not. But it is as you say and not just for the military, a healthy population is good for almost any institution.
Either way, it seems that there is much progress to be made. I am hopeful that the cost of researching SNPs and genome-wide scanning will decrease so that researchers can utilize the increasing number of software to sieve through vast streams of data, as many of today's online social and retail giants are increasingly adept at doing. Perhaps this will improve understanding in the future and the truth will speak louder than vested interest. But I'm not going to hold my breath (not least with my symptoms). I will definitely look into this in much more detail and consider finding a doctor that will acquiesce my own exploration into thyroid treatments.
It is a source of strength to hear that someone else has improved their lives like this. If you have to live with these symptoms, it is important to do so with hope.
I first want to say to opt for maybe ativan if you are having problems like this. Xanax can give a lot of rebound anxiety leading to dependence or difficulty in understanding signs/symptoms.
Thyroid heavily effects blood pressure, vascular and cardiac issues so it contributes to anxiety. When I was first diagnosed, I experienced similar issues, along with being hot/cold depending on dosage adjustment. I would feel a ”wide awake fatigue ” with anxiety and felt like I was losing my mind because I am anxious anyway. I didn't have a goiter.
I ultimately stopped thyroid meds and after becoming myexodemic about 2 years later resumed them (so don't necessarily recommend that).
Higher levothyroxine dosage can make you anxious so wondering if dosage is too high (diarrhea, racing heart, irritability, anxiety, inability to focus, overheating). Drink plenty if water. Take vitamins/minerals at least 4 hrs out and I definitely needed those esp B vitamins, D, and magnesium, calcium, potassium supplementation when thyroid died. Good luck and be positive
At first I only seen people talking about vitamin d, folate, ferritin, and vitamin b12 now I see alot about magnesium and zinc and stuff that helps how should i get mine all tested like i said in a reply up there I take a strong probiotics that stays in the refrigerator that has a bunch of vitamins and minerals in it as well kind of like a multivitamin has vitamins d and b12 b1 and b2 folate actually does have iodine not much, selenium and others
That sounds like a very bad thing to take! Iodine can make you worse rather than better. And multi-vitamins are bad for many reasons. You absolutely need to get your vit D, vit B12, folate and ferritin tested. It's bad to take vit D and iron without testing first to see if you need it. Too much is toxic. With B12 and folate, you need to test first to get a base-line. It could be that your B12 is so low you need to be tested for Pernicious Anemia. If you start testing, you'll skew the PA test. So, please stop taking this multi and get tested.
Most hypos are zinc deficient, and have high copper. Try taking some zinc and see if it helps. If it does, continue taking it for a while. If it doesn't, stop taking.
Most people in general are magnesium deficient, because soils are depeleted. And, if you take vit D, it depletes your magnesium even more. Take magnesium. No point in getting tested because it will always be in range due to the way the body handles magnesium. Just take 350 mg. Excess is excreted, anyway.
Vitamins and minerals will only help if you need them. More is not better. You need just the right amount. So, no point in taking a bunch of stuff in a multi in the vague hope that something will help, because you'll obviously be getting too much of something else. It's a pure waste of money. Plus, supplements should be started one at a time, with a gap of about two weeks before starting another one. That way you will know if it's helping or making you worse. Not everything suits everyone. Ditch the multi and start experimenting to find out what makes you well.
Is there a specific test to test for all your vitamins and minerals or you have to ask for all of them specifically, the probiotic only has 33% of your total value of iodine in it I didnt even know until I looked again the other day it's a strong probiotic with enzymes for the gut which is good and had all these vitamins too I thought would be good because I know alot of us with thyroid problems or even being without dont get enough nutrients throughout a day I thought since none of them were very high amounts that all it could do was help but I definitely understand where your coming from!
You are now taking 100 mcg of levo - T4. 100 mcg T4 will give you 65 mcg iodine. Plus what you get from food. It is very unlikely you need any more. Excess iodine can cause all sorts of problems, and is actually anti-thyroid in excess, used to be used to treat hyperthyroidism. Plus, as you are hypo, you need less iodine, not more. So, you do not need even that 33% RDA iodine in that pill.
I understand that you thought the extra vitamins were a good thing, but it's not as simple as that, as I explained. You could be doing yourself more harm than good.
You need to ask for every single vitamin/mineral test specifically. Doctors think that nutrients are irrelevant, so rarely do the testing off their own bat. They don't learn about nutrition in med school, and - of course - there's no expensive, dangerous drug they can prescribe for nutritional deficiencies, so they think they are unimportant. Hence their attitude to testing nutrients. But, point out that it's only four tests: vit d, vit B12, folate and ferritin. The basic nutrients. Once you have results for that, you can build up your supplement regime based on the results. Scientifically. Which is not something you'll find in a multi. There's nothing scientific about them!
Ok you said something about zinc and magnesium also I heard selenium was essential in your thyroid what about getting those tested? Or your just saying it will be easier if I just asked for the simple 4 you listed at first , thanks for the help by the way!
Yes, it would be much easier if you just ask for four tests, rather than a long shopping list. But, also, those are the ones we normally ask for.
Selenium isn't essential for your thyroid - your thyroid is beyond help, now - but it does help with conversion. Conversion, at the moment, does not seem to be your problem, so I wouldn't bother with that.
Zinc is necessary if you have symptoms of low zinc - hypos often do have low zinc - such as diminished sense of taste and smell, muscle aches and pains, etc. Just take some.
Magnesium you should just take for many reasons - number one being that you are very, very likely to be deficient for multiple reasons. Excess will be excreted, anyway. And, the tests, as I said, are useless.
You were very under-medicated on that test, there. Your FT4 is very low. Your FT3 is less so, but that is because conversion is being driven by your high TSH. You really needed an increase - probably a lot sooner - how long were you on 25 mcg? Pity your doctor had such a knee-jerk reaction and increased by so much, but you'll probably over-come that, and in the end feel better.
But, there's a lot of guff talked about rT3. No way in this world is your 'problem' caused by rT3. Everyone has some level of rT3, it's a natural process. In a healthy person, T4 converts to as much rT3 as T3, it's a way of recycling iodine. It gets high - over-range - when there is some sort of problem in order to either prevent you 'going hyper' (having too much FT3) or to force the body to conserve energy. But, rT3 does not cause the problems, it is just the result of something being not quite right. It is inert, leave the body in a couple of hours through conversion to T2, and does not block T3 receptors because it has receptors of its own.
The rT3 test - which, incidentally, is very expensive - will tell you IF there is a problem, but won't tell you where it is. High rT3 can be cause by many things (but doesn't cause them as some people think). One obvious reason is having high FT4.
If you have a conversion problem, and keep increasing the levo til the FT4 gets to the top of the range, it will start converting to more rT3 than T3, meaning that your rT3 will rise, and your FT3 will actually drop. But, symptoms come from the low FT3, not the high rT3. The solution to that is to reduce the levo and add in some straight T3. But, your FT4 is low, so it won't be causing high rT3.
There are other causes of high rT3, such as high cortisol, low ferritin, low-calorie diets, infections, and a whole host of other things. Have you had your nutrients tested? Or your cortisol? If not, frankly, it would be better to spend your money on testing them, than on an rT3 test which will tell you little of any use. It's a good idea to test them, anyway, even if you don't suspect high rT3 - and why would you? Nutrients and cortisol need to be optimal for your body to use thyroid hormone effectively. Personally, I would start with testing nutrients - vit D, vit B12, folate and ferritin. Low nutrients can often be the cause of breathlessness, too. So, ask your doctor to test those, then you can supplement accordingly.
I was only on 25 mcg for 6 weeks or so then I finally talked my doctor into letting go to a endo which is who found my goiter and quickly upped me to 100 but she finally let me see one because of my severe symptoms and hospital visits and stays because of my shortness of breath/breathlessness and air hunger also because of my heart beating to hard and fast and slow and weak and my head tingling, sometimes headaches, and being very lightheaded and dizzy feeling as if I was very close to passing out a bunch of times that's what made me go to the hospital so many times and the 4 night hospital stay, also I would have a horrible like sleep apnea type symptoms right when i would try to fall asleep i would be like holding my breath RIGHT before i fell asleep and gasp for breath and be scared to even fall asleep and or wake up in the middle of the night multiple times gasping for air with my heart pounding, I didn't know it was all my thyroid (at least I think it is tell me what you think tho please I also have the normal symptoms of fatigue, thin dry hair feels like straw, constipation, muscle aches, braing fog/confusion, and many more I stated in my opening statement) and nobody else suspected it was my thyroid either at the hospital they still arent convinced that was the reason for all this even tho I seen a heart doctor, lung doctor, neurologist, and more also had ct scans of chest and head, echocardiograms, lung function test everything checked out and I got that test on my thyroid about a week before I had the 4 night hospital stay and I kept telling all the doctors it was my thyroid and they all denied it could possibly be that and the main doctor that was over seeing everything denied me seeing a endo while I was in the hospital because my thyroid wasnt that off she said and it couldn't cause any of that in the first place and apparently shes seen people with peoples thyroid way worse than mine with no symptoms (which has nothing to do with me) but anyways the main doctor over seeing everything said it definitely wasnt my thyroid and denied looking into it and when they couldnt find anything wrong with me she sent me home telling me this was all cause i was having anxiety and panic attacks, the neurologist ended up putting me on topamax even tho my head problems are all because of my thyroid , they put me on paxil because of my "anxiety" and put me on xanax as needed yea when I get real bad with the air hunger and breathlessness i do start getting slightly anxious about it but its because I feel like I cant bresth like I cant get in a deep enough breath or like cant breath in enough air or oxygen and once in a while randomly I'll get extremely short of breath where I'll jump up and have to start taking deep breaths because all of a sudden I cant breath at all for no reason I'll be completely calm at the time sorry for writing so much and sorry if it's mostly alot of what I already said thanks tho, no I've never gotten my nutrients checked or my cortisol I finally convince my doctor to check my antibodys which I get checked in 3 days, I can ask but they seem like they just want to make it hard for you to get the tests you want done or it's so hard for them to just make you happy and get the tests you want done even tho you or your insurance are the ones paying for them not the doctors I dont get everyones big issue with getting the testing done
It's probably because doing the right tests would prove all their theories wrong, and their egos couldn't tolerate that!
Seems to me that all your breathing problems are more than likely to be due to your under-active thyroid. The problem is that doctors know nothing about symptoms. And they don't understand what happens in the body when you are low on thyroid hormone. You perhaps know that every cell in your body has a T3 receptor. So, when there's not enough T3 to go round, the body shuts down some of the receptors in areas considered non-essential. And, that's what causes symptoms. One of the areas considered non-essential is the diaphragm. You can breath using your rib cage muscles and your stomach muscles, so it puts the diaphragm out of action. You breath less well, but you can still breath. So, that causes a lot of breathing problems. So, yes, my opinion is that all this is caused by your thyroid.
When you say they 'put me' on this and 'put me' on that, you know you don't have to take these things if you don't want to, don't you? Just because a doctor writes a prescription for you, there's no law that says you have to take it if you don't feel it's the right thing for you. If it helps you, then fine, take it. But, if it makes you feel worse, then don't. What you really need is a decent dose of thyroid hormone and optimal nutrients, not a load of drugs.
Yes I definitely know that I dont need to take them. With my t3 being in the mid range you think my body could still not be getting enough t3 I know this dont mean much at all but my doctor said my t3 is perfect it does look ok seeing that it is in mid range but I only know so much. Also the 100 of levothyroxine should help then right? But may need to up the dose or lower depending on what happens within the next months or potentially change medications if it doesnt work at all?
For some reason, they always think that mid-range is perfect! No matter what the test. But, that just goes to show their limitations and lack of understanding of thyroid.
Mid-range is good for someone without thyroid problems, but hypos usually need it higher. So, yes, your body probably is still not getting enough T3. And, yes, the increase to 100 mcg levo should help because you seem to be converting very well.
Your retest at six weeks will show if you need an increase or a decrease. It's impossible to predict which, but don't let your doctor reduce the dose just because the TSH has gone down below range. Which it might. Once the TSH gets to 1, it is no-longer useful as an indicator of thyroid status, and it's the FT3 the most important number. Very few doctors actually know that.
As for changing medications, the NHS only recognises one form of thyroid hormone replacement: levo. It is very, very hard to get anything else. However, there are several different brands of levo in the UK, so if you feel the one you're on is causing side-effects, you could ask to change the brand. But, that would be due to the fillers, not the active ingredient, T4. T4 has three jobs, basically: To reduce your TSH, To raise your FT4, To convert to T3. It will do the first two - it would be very strange if it didn't - but some people do have problems with the third one. You don not appear to have that problem, so yes, the levo should work.
Since it does seem I'm converting right my t3 should go up with the upped dose I would think right? Everything should kind of even out my t4 should come up and tsh should go down maybe not perfect but some..? Also when on thyroid meds what do you want your tsh to be usually at least as low as 2? Because they might try to tell me I'm ok and it's still at the top end of the range and that's not ok if I'm on thyroid medication right? It should be low in the range and the t4 and t3 should be high in the range be on levo am I correct? Just so I'm sure I know what to say and i can look at my numbers and tell them if they try to tell me I'm "all better" or in "normal" range now and I should feel good..
Yes, your FT3 should rise with the increase in dose.
You want your TSH to be 1 or under. 2 is too high. And, yes, they might very well tell you 'no further action' once your TSH is at the top of the range but inside. GPs have very little knowledge of thyroid. And Endos often less! It's a constant battle. But, once you get your TSH down to 1, you must not allow them to dose by the TSH. It's the FT3 the most important number, because that is the active thyroid hormone. TSH isn't even a thyroid hormone!
Just being in the so-called 'normal' range is not good enough. But, even so, it's not just about the numbers. You need to go by how you feel, as well. Your FT3 should be at a point in the range where you feel well. If you feel well with it right at the top, that's OK. But, if you feel well with it 75% of the way through the range, that's OK, too. The aim of thyroid hormone replacement is to make you feel well, not just to get your numbers in-range.
When I'm in so called normal range my scare is that I'm not sure what to do if they do say "no further action" and wont work with me anymore because they fixed it they think and my tsh is in high range still and so fourth and worst of all I dont feel any better, what if they deny me any further treatment because I'm so called in normal range even if I'm no where near 1 and maybe dont feel better what are you suppose to do then try to hopefully talk your gp into sending you to a new endo?
I would avoid endos, if I were you - unless you can find one that actually knows something about thyroid. Mostly, they're diabetes specialists - and apparently not very good at that, either! People are often better off with their GPs. But, all you can do is argue your point. Read as much as you can, learn as much as you can, and then be obstinate. I had one doctor wanted to reduce my dose when my TSH was 0.45! I just kept saying 'no'. He tried to 'explain' to me how 'dangerous' it was - although he had absolutely no idea what he was talking about, just making it up as he went along - and I just sat there and said 'no'. No, my TSH is not too low; no a low TSH is not dangerous; no I'm not taking too much; no I will not lower my dose! Eventually he lost his temper and just gave up. That technic won't always work, but worth a try. lol
If all else fails, you just have to buy your own levo and give yourself the increase that you need.
I thought I wanted to see a endo because they specialize and no more than a normal gp? That's who found my goiter and did a ultrasound of my thyroid and who upped my dose other than them 2 things he disagreed with everything else and that many of my symptoms were NOT due to my thyroid supposedly, but he did do them 2 other things that my gp would have took a long time to up my dose that far and probably never done a ultra sound and found my goiter, I thought they were like thyroid specialists and you wanted to go to them I didnt know, I have no clue so tell me if I'm wrong which i probably am but isnt 0.45 usually kind of low for tsh?
Well, that's the theory. Logically, you would expect an endocrinologist, due to his title, to know all about all the different hormones. But I once saw an endo who didn't even know what DHEA did! The sad reality is that they have actually specialised in diabetes but don't even know much about that. And all the other parts of the endocrine system remain a bit of a mystery to them. I have seen four endos, and not one of them had a working knowledge of the thyroid - oh, I could tell you some tales! lol The GP doesn't know much, but usually knows he doesn't know much. The endo thinks he knows it all. Have you heard that joke about endos? What's the difference between God and an endo? God doesn't think he's an endo. lol
And, the endo you saw may have 'found' your goitre, but goitres don't exactly hide, do they. And he then went on to increase your dose by too much! So, I'm not really impressed with him. And, as you found out, they know nothing about symptoms - how do you diagnose a disease without knowing the symptoms? Or, rather, without knowing about symptoms, how do you even know what to test for?
Is 0.45 low for a TSH? That is a question you cannot answer without putting it into some kind of context. You especially need to look at it together with FT4 and FT3. If you are on thyroid hormone replacement, then no, it's not particularly low - especially not if taking T3. And, not at all if the Frees are well in-range. However, if the Frees were over-range, you might even consider it a bit high! The TSH is just not something you can look at in isolation. It just doesn't give any concret information. Which is why doctors are so wrong in just testing TSH to diagnose and/or dose by.
Had antibodies tested what do you think? The ranges are very wide and misleading but will post them but form what I research they sound rather crazy as to how high they go
Tpo antibodies 32.0 ranges 0 - 60.0
Tg antibodies 18.5 ranges 0 - 60.0
Please help me on understanding what these mean I do understand some people have way higher than what I have but also understand that them ranges sound crazy compared to what I've heard and you shouldnt really even have any antibodies
Say I go in for my next testing and my tsh is say 4.0 but is in "range" so he says I'm good and wont up the dose any further , will the 100 mcg still be working on getting in my system and helping my thyroid also on lowering that number and helping my t4 and t3 or is that about the best the 100mcg is gonna do for me at that point?
I just had my antibodies tested the lab has a crazy wide range for these as my understanding having even the low amounts I have isnt necessarily normal and the ranges are very very wide and misleading
Tpo antibodies 32.0 range ( 0 - 60.0)
Tg antibodies 18.5 (0 - 60.0)
Please help me understand what these mean I understand there not VERY high but I normally healthy people dont have that many right?
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