For some reason my Doc tested my antibodies again and they went up. But my tsh and free t4 are ok. 2.24 & 1.3
Thyroid peroxidase ab = 127.9 up from 49 2-3 years ago and thyroglobulin ab is 7.5 up from 3.9 3.9 is normal range. Ranges were .0-9 & 0-4.
I've been on 25 MCG Levo for 1-2 years or so.
I finally had the cortisol and acth levels done they were normal. ACTH was 6 and cortisol was 12. No ranges given for them. I had it done in the afternoon because I just can't get up early enough for anything
Like that anymore. I'm too exhausted and it messes up my blood sugar for the whole day. I've definitely been sleeping a lot and feel like I have mono or something.
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I tried raising the dose to 50 mcg and my blood sugar spiked too much. B12 was too high last time like above 2500 so I stopped supplementing it. He didn't test it this time I don't think. Vitamin d has been low for a while. But pth is high and I had a high calcium at first so I can't over supplement vit d. I'm excreting a lot of calcium in urine. Ferritin and folate were fine when I had them tested and I was tired then too so it's not that. I'm wondering if I've had a reactivation of Epstein-Barr again. I had a reactivation of it after I got out of the hospital almost 5 years ago. And one of my students said he had mono. I know it's supposed to be the kissing disease that I have read that you can catch it by other means to. Or at least have it reactivated anyway.
Well it's in the normal range so I don't see that it's really under medicated or not ok. The highest it has ever been was three and that was when I got up earlier in the morning last year I don't remember now to have it done. At that point he tried to raise it to 50 but I couldn't do it. However when I did try to raise 50 MCG my blood sugar went very high so I had to lower it. My father on the other hand has it now started taking Levo again and increased his dose I think he's on 50 to 75 now maybe. And his blood pressure is OK plus the swelling in his feet stopped.
When I was having extreme fatigue I also had an eye infection coming on and not sleeping enough. I Wonder if it was that plus a lot of stress in my life etc. The diabetes alone has made me feel totally exhausted since I was diagnosed and I am up all night at weird hours taking care of my blood sugar etc. the blood sugar swings make you exhausted It could be more that than anything to do with my thyroid.
My fathers TSH is much higher than mine I don't remember what it was when he was first diagnosed. And his anti-bodies are much higher. Now that he is medicating again the antibody level came down. That is only on the lowest dose and 50 MCG now
000ggg the more you read on these pages the more you will learn about ranges and how they affect the body, the ranges used, especially for thyroid problems were as a guide only, and for healthy people, I can't advise you on your diabities as its not something I have any real know,edge on, but I will say, if you are having that much trouble keeping your levels steady then I do hope you are getting a lot of support and help from your diabetic nurse.
On the thyroid side, greygoose is correct in saying that a tsh kevel of 2.4 is not ok, especially for someone on medication for it, you have to go more by how you feel and not a reading, ( unlike your blood sugar). If my tsh gets up above 2 then I feel decidely ill.
If your medication increases your blood sugar do you not increase your diabetic medication to counter act it?
Thank your whisper – my TSH has always been at this level before I was even medicated so I'm not really sure what to think since it's in range. my doctor is not going to start increasing the dose of levothyroxine. As I said he increased it when one test was at 3 three months after I started Levo. As far as the diabetes goes I have type one diabetes and it is not unusual to have fluctuating blood sugars and very low blood sugars which are dangerous also high blood sugars are dangerous if you don't have type one diabetes there was no way I can explain that to you but that is the first thing that I have to worry about my blood sugar above everything else other than life-threatening events obviously. Last summer I was in the hospital with high blood sugar and keytones my blood sugar was crashing every time I ate and I had lost 20 pounds. I don't want to get back in that situation ever again if I can avoid it. After a lot of hard work and eliminating all gluten for cross-contamination and all grains I have gained some weight back and I am much more stable with a better A-1 C now. When I increase the levo dose just to 50 MCG my blood sugar was jumping up to 250 and higher. that is not something I'm going to do. And it's not even clear that I need to be on a higher dose or on it at all as far as I can tell. I tried stopping it but I get a severe migraine now if I try to go off it so I guess I'm stuck on 25 MCG for the time being anyway.
Increasing insulin is not a solution because when I increase insulin because I have very variable blood sugars I am then in more danger of having worse lows. if you were on insulin and had the type of fluctuations I have you would know what I'm talking about. we will do anything to avoid lows. That is why I eat a low-carb a hydrate diet so I take smaller doses of insulin- it's a lot safer that way. But even with what I do it is still always a danger.
Another thing about assuming that I could increase my insulin it's not that simple – if I increase my basal insulin that's not going to stop the spikes that I got from levo in part because there is no way of predicting when that Spike is going to happen for me and then once you get to a level of 250 you have to correct it. Also keeping in mind that you are eating two or three meals a day and the insulin that you take for the meals plays into that as well as all of your activity. It is very complicated and nit easy to figure out what is going on
What I don't get about this site is why everybody tells you it can't possibly be normal to have a 2.5 TSH even though that is not even at the high-end of the range that I was tested for at all.My T4 level is OK they are both in range. And as you say everyone is different so why assume that. Are you saying nobody could possibly feel good unless they have a TSH of one? My father has a TSH much much higher than that- he's on 50 MCG now but he feels fine.
Hi 000ggg there is a good reason members here don't want to accept a TSH as high as yours as "good". The fact is that doctors are not supposed to treat thyroid hormones so loosely to be "within range", but many GPs who don't understand anything about the endocrine system treat hormone like other readings and are happy just to have them "in range". I personally have had a battle with levothyroxine and trying to get my TSH to a good point. Luckily I've had good qualified doctors to help me along the way, each and every single one of them (including 3 endocrinologists) all aimed to get my TSH to 1 or below as they understood that with hypothyroidism that is the goal and where most patients are rid of symptoms. I had a TSH that was also "within range" for many months, just a slight bit higher than yours, yet the doctors were all unhappy, my Endo actually got angry that he wasn't able to lower my TSH properly without causing me more issues. This was legitimately a 6 month long battle. All the while I was "in range". And I had tons of symptoms.
The kicker is that TSH doesn't actually matter that much, what matters more at FT3 and FT4 readings, those show how the levo is being absorbed and converted to T3 in our bodies. But before a doctor will consider those values they always aim to bring the TSH to around 1 or under.
Now please consider we are all different and while the VAST majority of us do better with a TSH under 1, some are actually perfectly fine with a TSH of even 2 or 3, what matters is how to feel! Do you still have symptoms? Then you are likely under medicated. Do you not have symptoms? Then the whole discussion doesn't matter.
Personally when my TSH was at 1 I wasn't doing that well, the other tests FT3 and FT4 showed that I wasn't converting the medication properly and they had to put me on T3. Now my TSH is under range! And I'm finally doing better. My Endo isn't bothered by my TSH reading because he knows how to interpret the results, and not just blindly put numbers inside ranges.
I tried to explain this as simply and quickly as possible, because actually it is a really long and complicated thing explaining why TSH matters and doesn't matter, what TSH actually is, how it works, and how TSH readings can (and often do) let down hypo patients. If you truly are interested to learn this I can give you much more info. But please be open to learning for yourself, and don't just go by what a couple doctors say. Doctors are just people, and not all of them are truly that great at their job (to put it lightly). When you learn how this condition works for yourself you will be much more empowered and will have the ability to spot doctor's BS long before it does you harm.
I've had plenty of doctor bs between myself and my family to last more than several lifetimes and much worse than the things in this discussion. I'm able to spot it. What I don't understand is the chorus here on if your level isn't at x that is the problem. My Doc is an endo and it seems most endos disagree.
I am symptomatic for fatigue but it's not really clear to me what is causing the symptoms since the blood sugar swings alone and trying to live with that and have some kind of a life that resembles anything near normal is enough to make anyone feel exhausted every second of the day. Another thing I notice which I pointed out along time ago is that there are numerous posts here by people constantly complaining that they don't feel good whatever level they are at and whatever dose or whatever medication they are taking.
Is there anybody that actually feels better from taking the thyroid medication? I mean I know some people have to take it if you're severely hypothyroid or if you have Graves' disease or whatever. My father actually stopped taking his totally and he was pretty severely hypothyroid but his activity and energy level didn't get worse when he went off it. He had to stop as I said due to blood pressure increases but he's back on it again now and it has been OK for him.
I guess you do since you said that the lower tsh was where you feel ok.
I'm too exhausted and dealing with too much right now to start trying to read complicated books or posts about TSH levels and since nobody seems to agree on any of it it I'm not really sure what the point would be. I don't have the energy to go around to 50 million different doctors and right now I'm worried if I'm even going to end up having health insurance with what's going on politically etc.
I have felt ill since I was put on insulin. I feel weak, tired and hungry a lot if the time. It's worse often when my Bg is in a more normal range- I feel weak and like my Bg can easily crash. Insulin makes me feel hungry so I feel like I'm starving.
Long story short: the main consensus on treating thyroid hormones is that for this condition the results matter over clinical changes. Meaning that doctors have been trained to ignore symptoms and just put patients in the range. This is done because of very outdated information (which is now being proven wrong) that "over medication" with thyroid hormone leads to heart problems and osteoporosis. In fact this isn't the case and well trained Endocrinologists who have proper experience know that optimizing the hormone levels (not just getting them in range) resolves many of the symptoms that thyroid patients complain about without adding risk to bones or heart. In fact it is common knowledge amongst doctors that hypo thyroid patients are commonly still symptomatic even once brought into range with levothyroxine alone, but once again doctors have been trained that once you're in range you treat those symptoms with other drugs instead.
But there are many Endos out there who know that these symptoms can be gotten rid of by increasing levo, or in some cases (many cases actually) adding T3. I've been to several Endos myself as I've mentioned, the reason for this is because the first 2 were idiots who legitimately had no idea how to treat me or my symptoms. I eventually was able to get a referral to an Endo who is a Professor of endocrinology (Prof. Dr. md), and he personally confirms most of what is spoken about on this forum. He treats his patients based on numbers AND symptoms, making sure to rid patients of symptoms, while using the numbers to ensure that he doesn't over medicate his patients but that they have sufficient levels of T3 hormone which is what actually matters most. With him I've trialled a few alternatives to just levo alone and I finally ended up being given a combination pill of T4/T3 hormone which is perfectly dosed for me. My TSH is under range, my FT3 is right at the top, and he's happy with that because my symptoms are gone and in no way am I in danger of over medication (according to his professional knowledge).
Imagine how much work that is for most GPs or Endos who can't be bothered to step outside the box. That is why most doctors do as they're told and ignore the symptoms once in range.
Another thing you should know is that Hashimoto's and hypothyroidism are not as well studied and understood as other auto immune diseases, or endocrine conditions like diabetes. Scientists have been able to synthesize T4 and T3 hormone and have created tests that can measure the activity of these hormones in the blood, but there is little knowledge of how these synthetic compounds work at a cellular level, there is no test for this. So just because numbers become in range or even optimal it doesn't mean that the hormone is actually efficiently and effectively doing it's job at a cellular level, and this alone can leave patients symptomatic. Which is why we keep saying it's not about the numbers but how you feel. Many of us have learned these things through experience. The second half of the equation is dietary changes (many find gluten free to help, or other diets) and vitamin/mineral levels, lifestyle changes. These things are often needed to ensure the hormone properly works in the body, regardless of your TSH.
It starts to become apparent at this point that doctors can (or only choose to) do so little, because it actually takes a lot to improve with this condition. But in the experiences of many members it is very possible, and the first place to start is with optimizing thyroid results, then optimizing vitamins and minerals.
If a TSH of 2 works for you then that's ok! You are who you are and one thing I can guarantee is we are all different, but in general in order to obtain higher levels of FT3 and FT4 (the actual level of hormones freely available in the blood) TSH tends to have to be lower. And often even at TSH of 1 we find that patients still don't have optimal levels of FT3. Another thing is that the thyroid produces about 10-20% T3 and the rest T4. So when the gland starts to produce less (as is the case with hypothyroidism) then FT3 levels drop, as now you're only left with the amount of T3 your body can convert from synthetic T4, and this is assuming you're able to convert it in the first place. If you're unable to convert your TSH could easily be 1 or even suppressed, but you'd still be symptomatic and you wouldn't know about your conversion issue without FT3 and FT4 results.
So in general TSH under 1 tends to work. But in all reality TSH doesn't actually tell us much other than if we have a pituitary problem or not, once we see that TSH responds to levo you can toss that stupid thing out the window and focus on FT3 and FT4, and if your conditions still don't improve then you'd have to check TT3 and TT4 (total t3/4) and RT3 (reverse T3).
I hope I've explained with some clarity about the whole issue. Sorry that it became so long.
Thanks. It is pretty complicated. I had t3 tested and it was in normal range. One thing that did happen when I started Levo was that tsh went to 2.9. I had it tested earlier inthe day that time so it could just be higher or have been higher then due to that. So endo increased to 50mcg but then My blood sugar spiked and I went back to 25 mcg and that is where I will stay because I can't have Bg spikes to 250 etc. it's too difficult to manage period. H and type 1 make each other worse I think. Currently I have multiple things going on including a knee meniscus injury which has me nearly disabled with pain etc but I'm still having to do stuff of course.
It's quite frustrating when you have multiple conditions, and the treatment for one affects the other 😓 sorry to hear that you're dealing with this.
I don't understand the correlation between levo and blood sugar myself, do you know if it's the levo itself which causes a sugar spike? Is it maybe a filler or ingredient in the tablet? I wonder if the same effect would happen if you were put on T3 instead, or another form of levo... I would hope that there is a solution where you can treat your thyroid levels without affecting your blood sugar levels.
Yes it's the levo itself which causes Bg spike. It has a steroid like affect apparently. It can also affect cancer growth if you've had previous cancer. My endo would never put me on t3. He didn't even want to treat this at all and still doesn't think I need Levo really. I can't switch docs - easier said than done and he gets me everything I need for d treatment whic is a great deal. The type 1 takes precedence over any other treatments. At this point I think the low dose may protect me from further progression of h I hope. But I feel like crap. Utter crap. It's not much of a life dealing with this. The knee is the absolute worst - constant pain and no sign of healing. I can't take a steroid shot and surgery is risky and can cause another dvt and may not help. PT has not helped and seems to have made it worse. I just have no energy to deal with this anymore. I can't go up and down stairs normally.
Is your doctor an Endo or just a GP? I would hope that with your conditions you are seeing an Endo.
One thing I know about thyroid levels is that low FT3 (and high RT3) can cause insulting resistance. To counteract insulin resistance you need to counteract RT3 levels... I hope this doesn't get too complicated:
IF you don't convert levo well, which most of us don't, it could be that the more levo you take its pooling in your blood, your body removes this excess t4 hormone by converting it to RT3, the more RT3 you have the lower your FT3 goes and the more insulin resistant you can become, this goes into a cycle and only gets worse unless corrected. Luckily taking T3 reduces RT3 and raises FT3 which would help counteract this problem.
Personally I had this experience (minus the insulin resistance), my body didn't convert levo well and t4 mono therapy really didn't work for me, it wasn't until I got my docs to test ft4 along with FT3 that I could prove to them the levo wasn't working, they added T3 and what a difference.
Have you had your FT3 levels checked? Maybe you can even get your doc to check RT3 (quite unlikely). I'm sorry you're stuck to this doctor, if they aren't doing their job you shouldn't risk your health over it... I would in the meantime keep an eye out for other doctors, and consider switching, it's your life, your right, your health, don't leave it in someone's hands who doesn't care or isn't willing to investigate all options to give you a better life and wellbeing. You deserve better. (And I don't say it lightly, I know how hard it is to find a doctor who will do their job at 100%)
As I said there is no switching doctors. You have no idea how hard it is to find an endo who gets you what you need for type 1 which is a lot just to function and stay alive each day etc. Second no guarantee another doctor will be better. I went to another Endo after my hospitilization last year and she and the whole clinic were truly awful. A million x worse than my situation. Of course I did not leave my endo and went to the hospital 2-3 follow ups to see how they were. She didn't even know what hashimotos was really and said it wasn't a diagnosis saying it was the same diagnososis as hypothyroid. This person came highly recommended from the pa at my Gp office who I never see or my gastro office I can't remember now
I had t3 tested and it was normal. I don't have insulin resistance I'm very insulin sensitive overall and I take low doses for basal and meals unless Bg goes above a certain level for whatever reason and then it sometimes takes longer and more insulin to get it down which is typical for type 1. Only to crash again when you least expect it.
Right now my knee is my worst concern because I will end up disabled from this if it doesn't improve I'm sure.
I understand. I wasn't recommending you leave your doctor, I meant that if you just keep an eye out you may find another (additional) doctor who can help, please note I'm not personally in the UK, so I don't fully understand the hardships of accomplishing this under NHS.
For example I have several conditions myself and have 3 specialists plus 2 GPs, no shortage of second opinions and I've found it quite helpful, of course too many doctors can also be a bad thing, so I don't recommend you enter my situation fully (it's been hard to manage).
If you have FT3 along with FT4 results and you don't mind sharing I might be able to help see how normal it is. Since within range doesn't equate to levo conversion. One easy way to tell is if your TSH is going down and FT4 is going up, but FT3 isn't increasing then you have a conversion issue. All the while your FT3 results will be in range and appear normal, it's not the range we're so worried about here, more so the ratio between FT4, FT3 along with TSH. You may not have insulin resistance now, but if you aren't converting levo AND you have diabetes it is quite possible that you will develop insulin resistance and possibly leptin resistance as your RT3 levels begin to rise (from lack of conversion to T3). Your blood sugar spike might be an indication of that. I read a few reports before trying to help you and it seems not all diabetics have blood sugar increases from levo, so my opinion is levo is just the catalyst, but it's in fact the hormonal balance which is causing the spikes (not the levo itself), so if levo isn't working for you, you need another option, and it's likely T3. I don't wish to repeat myself, but you really should investigate this option, as from my understanding T3 is the better treatment for someone who has both hashi's and diabetes, it might be a combined therapy with t4.
I'm not sure much about the knee thing sorry to say, however it could be connected to the under medication of levo, many patients report joint, bone and muscle pains, edema, and worsening of arthritis while under medicated, and often find that with optimal dosage (TSH 1 or lower, and more importantly FT3 in the top third of the range) these pains subside.
It's quite important that FT3 is in the top third of the range minimum, I don't think I've ever heard a patient feeling really well with FT3 at halfway or less, in fact it's the most important figure you can practically ignore TSH and FT4 (assuming they aren't far over range) as long as FT3 is in that sweet spot. Personally I require my FT3 right at the top of the range to be 90% symptom free (my remaining symptoms are likely due to my other conditions which I find harder to manage).
Thanks. I'm in the us but still not easy to find another endo. If you know anyone who specializes in thyroid I would appreciate it since my father and I both need it. My endo will never do what you suggest though I had to fight to get any treatment and fight my gp to test t3. I posted the results here. It was 1-2 years ago. My knee is from a recent injury- torn meniscus, cyst and sinusitis fluid in joint from the injury. Ra does run in my family so I'm concerned about that too and I have other issues such as chronic pain from injuries. This may need surgery I have to ask the Doc about this soon hopefully.
Some of my spikes with the Levo could be from what you say but there is no way to know - I have spikes alll the time. The Levo did cause two significant spikes so I had to lower the dose. And with d you never know for sure what the cause or causes are because there are multiple things at play 24 hrs a day. Type 1 rarely get true insulin resistance and usually only after years. Everyone gets not true insulin resistance but what is a higher need of insulin when Bg is high. In other words you need more to lower a higher number and it takes longer to lower it. Typically for me after this my Bg will crash and or run lower for a few days It comes in waves
There are multiple factors. True insulin resistance as in type 2 is caused by not being able to use your body's own insulin. My body makes no insulin and I'll be in hospital in 2 hours without my basal. Type two typically take much higher doses all the time of insulin than type 1. Both basal and bolus. That is a sign of sensitivity if you need low doses. Type 1 and type two also have fluctuating needs depending what is going on. Illness may require much higher doses.
To be honest I'm afraid to even ask about further testing at this point because it will be an argument and cause me stress which means worse Bg management etc. again my knee is the big problem right now because I'm just about non functional. I also have low vitamin d, low WBC, high pth and high b12.
Thanks for the explanation, I now understand a lot more the picture with your diabetes (considering I don't know much about the condition really).
I wish I could recommend an Endo, however I'm Canadian and I live in Germany. Never found proper health care until I moved here, even then I had to fight my way through the system and am still doing so. I get the entire stress over bringing these things up with the doctor, I get that stress all the time myself, I hate it.
In my experience I had to fight for my health and healthcare, nobody did it for me and every doctor only wanted to do the bare minimum. This is one of the reasons I study so much about my conditions, because nowadays I go armed with medical journals and good information, the doctor's who are ok with this take me a lot more seriously. My Endo calls me a professional thyroid patient, it's gotten to a point where I practically treat myself and go to him for tests and opinions, and he's ok with that (of course he wouldn't allow me to do anything stupid). Luckily he's a professor (prof. Dr. md) so I think he has a lot of experience and tenure, he's the head of his practice and can order whatever tests he wants without issues. It took me a couple years to get him, I went through 3 other endos, some worse than others, none of them wanted to consider t3. The last Endo I saw before him was in the same practice, she guaranteed me I would do badly on t3 and patted me on the back like a little child while laughing about it. Super degrading. I put in a complaint about her and asked to see another Endo. Each time I went through such an experience it wasted my time and health, putting me back months and keeping me on a dose of meds that didn't work. But I wouldn't have done it any other way, because now I'm finally feeling ok, my condition doesn't rule my life, and the other option would have been to do nothing and continue not getting the help I needed.
So trust me, I totally get the stress and headache. And I don't wish the struggle on anyone. My recommendation would be to just do a bit of research from time to time when you have the energy, and look into highly respected endos (with good reviews from other patients and doctors), ask doctors you know or meet if they can recommend a good Endo specified in what you need (that's how I found mine, I needed a dermatologist one day, on the day I met him I asked if he knows a good Endo, and he gave me raving reviews about my Endo now). Get on a waiting list (or two or three) even if it's a year long, and when you can get a consultation explain everything, feel out the doc, and don't continue with them if you can already sense problems.
And most importantly take little steps, don't overload yourself, don't add stress. This is why I prefer to say keep an ear/eye out rather than actively search, likely you encounter doctors and other patients from time to time and simply asking them if they have a good recommendation might be enough.
Thanks Dang and yw. I'm Canadian also as well as a citizen here. We may be returning there eventually depending on what happens here.
I'm sorry you had to struggle to get the right treatment. How did you know you needed t3? A Doc I saw at city md suggested armour and said type 1 or any d and h make each other worse so that would help me more. I told her my endo situation she said maybe try one of the natural docs but they charge a fortune and some are a bit questionable in knowledge. I'm not Sure how mt endo would react to that. Due to d. I Can't risk losing that r.
I will stay on the lookout for sure. I Have to try to heal my knee first. All summer I was in PT and no one figured out it was a torn meniscus till I did an MRI. I'm really upset about that. One of the PT even tried to tell me there was nothing more they could do and I had a normal mobility in my knee even though I cannot go up and down the stairs normally at all LOL. Yep- I'm just having constant pain and swelling in my knee for no reason! I often wonder how these people became medical professionals at all!
That is great you found such a good thyroid doc!
I still worry about what will happen if I try to increase the dose or T three as you said because if my blood sugar does go up that means I have to start increasing my insulin and that is not something I want to try. I have bad lows at times that drop fast and it's better to be on the lowest possible doses of insulin. I guess it's possible that T3 may solve that situation who knows.
I'm going to try and get up early this week Thursday or Friday to get my blood work so that I can see the true level of my TSH. It should be higher in the morning and then my endo will prolly do something. I'm very nocturnal and it's really a struggle for me to get up in the morning- my blood sugar tends to crash in the morning too so I just avoid it.
Armour could be worth it too, my endo prescribes it to some of his other patients.
I was worried too when starting T3 but it works quite differently than T4, it might be that your blood sugar problems could be related to T4 only, and from my understanding T3 is only beneficial to someone with diabetes (based on what I've read), whereas many patients have issues on levo alone.
Here's my story of how I ended up getting prescribed T3 (sorry its a little long):
The way I found out I needed T3 is by doing poorly on levo alone (in a nutshell). I started reading up a lot more on Hashimoto's and becoming more active on this forum. I brought my knowledge back to my doctor and asked them to test FT4 and FT3 also, they had been testing TSH and were happy that they brought mine under 1. But considering my symptoms, the doctor (half-reluctantly) agreed to test FT4 (but didn't test FT3). When the results came back my FT4 was over the range, and a few of the GPs at the practice spoke about it and decided to lower my levo. Well well.... my symptoms only got worse, I got another test 6 weeks later, my TSH went up over 3 and now my FT4 was well over range (even higher than before). I explained to my GP from what I read it seems like I'm not converting the levo, my GP agreed to refer me to Endocrinology. That's where I a year of bouncing from doctor to doctor started, I spent most of the time with a TSH around 3, all the docs agreed it should be lower but none of them could raise my levo because my FT4 was so high, I went along with all sorts of side-treatments like a course of selenium (which after 2 months put me into toxic ranges and I ended up sicker than ever, thats when I got diagnosed with a number of gastric problems and enzyme deficiencies). The good thing is they kept testing FT3, and I started putting together a record of my results over time, I noticed no matter what my dose was my FT3 never went up, not only that but my FT3 was higher BEFORE starting levo. But... all along the endos didn't even want to talk about T3, by the 3rd doctor I was practically begging for T3 and she's the one who laughed at me and made me feel like an idiot (guaranteeing me that I'd do poorly on it).
Luckily I had just seen a dermatologist who seemed to know more about Hashimoto's than all the Endos combined, he told me my hair and skin problems were definitely down to my Hashimoto's (every other doc told me it's genetic because I'm a man...), he gave me the name of my current Endo, and told me he's helped many people and I shouldn't waste my time with anyone else. It took me months of waiting to get in with him, I was doing so poorly this whole time on levo alone, TSH around 3.5 the whole time. Finally I got in with him, and on the first appointment he started me on a low dose of T3, this lowered my FT4 and I was feeling much better, my TSH was still high and FT3 was still too low, so he then increased both levo and T3 and got me in this perfect balance where my FT3 is at the top of the range and my TSH is at the very bottom of the range (about 0.3) and this is what finally worked for me. He understood that T3 actually counteracts FT4 and lowers it, he worked my dosage in a way that I was able to get to optimum pretty quickly, in just about 3 months.
Now I've learned; any time I need to see a new specialist I email a doctor I already trust (usually my endo), and ask them if they can personally recommend someone, this has been working out for me rather than blindly shooting in the dark and booking with the first clinic which will take me.
Thanks Dang, great description. I understand it. You are very lucky to have found that doctor. I wish I could find someone who could figure out what is going on with me.
I think my Endo knows about all of this because I mentioned conversion of t4 early on and he said the numbers will show him if I need to test that. But then he never mentioned it again. He just raised Levo dosage to50mcg when my tsh went up. I don't think he ever teted t3 he said the other numbers would show it. I'll try to find what all my numbers were when I had t3 tested by my gp. It was in normal range then.
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Will dumping gluten reduce thyroid antibodies?
Thyroid Antibodies - Brain Antibodies
Goitre and antibodies but bloods all fine
