Hello all. Thank you all for your invaluable advice to one another. I have learned a lot just from reading, but I have finally gained the strength to post. I am a 39 year old F in the US, outside of New York City. I was diagnosed hypo by my general practitioner in 2011 after insisting on testing. This was at the onset of my third pregnancy in four years. She said I was a "borderline" case and started me on .25mcg levothyroxine. I suspect my thyroid issues started with my first pregnancy, where I had gained upwards of 65lbs/4.5 stone despite careful diet and regular exercise. I recall my OBGYN laughing off my concerns and telling me to try "eating less". (As an aside, my first child was later diagnosed with mild autism). I was diagnosed with Hashi's in 2015 via blood tests and ultrasound. Since having my first child in 2011, my weight ballooned from 130lbs/9 stone to 205lbs/appx. 14 stone after my third was born. I admit after the third, I waxed and waned with diet and exercise as extreme efforts seemed to reverse the moment I relaxed. I began to eat more junk and lose hope. I was then put on Qsymia and .50 mcg levothyroxine, which basically starved me, wore out my adrenals and depleted my bank account. About 6 months later I asked for an increase in levo but the endos refused (I went through three docs in one practice, as two left). They told me to go higher on the Qsymia or pick another weight loss stimulant. Fast forward two years later. I stopped Qsymia seeing no benefit and quickly gained back all the weight I had lost. I was completely fed up, completely symptomatic and nearly bed ridden except that I had three little angels to take care of. This past March I started DOUBLING my levothyroxine dose on my own and took .50mcg in the morning and then another .50 mcg at night (I wasn't exactly clear headed at the time). I called my Endo and told her what I had done and I had been on this dose for over 2 weeks and had began to feel better (not dramatically but the most obvious symptoms began to subside and I could now get off the couch). When I saw her, she scolded me in a thick Russian accent "Your TSH has dropped! You were perfect (at 2.22), now you are at 1.05!" I told her to please look at the whole picture, that is the other labs and my symptoms, that I was feeling better, to which she responded and I QUOTE "You would feel better on cocaine too, lots of things can make you feel better!" To say I was livid is not the word. In short, she agreed to change my dose to no more than .75mcg but refused to go higher, supplement with T3 or prescribe NDT saying that I would go "hyper". (By the way, pulse, temp, everything was fine, BP is always very low). After several weeks at this dose I have started to work out again but still feel completely exhausted for hours afterwards and cannot seem to make a dent in the scale. Some hypo symptoms have started to return and from my labs I suspect I have a conversion problem. I have tried gluten free for about a month which did not seem to make a difference and my antibodies (which I insisted on testing) were negative. Before you recommend private lab testing, let me say that New York state does not allow this so I will always need a traditional doc to prescribe labs. I have purchased NDT but have not started it yet as I am scared both of what this horrible endo will say and I am also not sure how to start it. All I know is that I am bloated, tired, depressed and I do not recognize my once athletic self in the mirror. I am starting to lose hope that I can regain my vitality. Please help. I am attaching a photo of March 2017 labs which I felt were an improvement over my last few years, but again, your advice is apprciated. Keep in mind this lab is at a rebellious dose of 100mcg, which my Endo has now decreased to .75mcg as a "compromise". Prior to me doubling my dose, my TSH ranged from 2.28 November to 2.22 in December. I know this is not the most important marker, I am just providing it for reference...
New here, seeking advice for Hashi's. - Thyroid UK
New here, seeking advice for Hashi's.
Do you have any results with your vitamins and minerals?
B12, vitD, folate, ferritin, iron
These are often deficient in hypos/hashi's and is an important thing to test and supplement in order to regain health.
Your FT3 and FT4 are low in the range, most people feel better in the upper quarter. For some people this means suppressing TSH.
Your doctor is going to be of no help to you. Can you switch doctors?
Thank you Dang. Yes, I couldn't attach more labs, but I am ok for all vitamins (I used to be very low on D but now take high potency supplements). I also take selinium and alpha-lipoic (spelling?) . I CAN switch doctors, but they are all pretty much the same, traditionalists. New York has powerful medical lobbyists who control the industry. Funny - I actually did changed practices and wound up with one of my original docs after she had moved...so I know they are always going to be useless, but they are covered by insurance. I am hoping to monitor on my own with the help of their prescriptions for lab-work.
I would like to switch over to NDT so I am less reliant upon the levo prescription. I am very familiar with Stop the Thyroid Madness and the Thyroid Secret, so I am not exactly a beginner but I am looking for confirmation as to whether I have a conversion problem and whether I should add NDT to my levo routine or just stop levo cold turkey...
Since you seem to know your research I'm just going to make sure about the vitamins are you just "ok" or are you optimal? There's a big difference and it will affect your conversion.
About the conversion itself, personally I can't tell by the labs (maybe another member can?). To me it still looks like you are under medicated. Personally I think you have to give it your all with Levo before you can tell if you do well on it. I agree with greygoose you need to go easy on the exercise, especially with your FT3 results.
If you get your FT4 up and don't have improvement, or symptoms get worse, then it would be time to investigate the reasons and options. But if you are able to have success on Levo alone I would say that's your best option. It's easier to do, with T3 and NDT you often have to split doses, and you gotta plan your day around it. I take t3/t4 combo and it's a bit of a pain. My days are scheduled around my medication/supplement times. I have to eat at specific times always to make sure I can take my second dose of T3 at the right time so I don't start crashing too soon or too late..
Personally I would say you need more Levo. I am not a medical professional, this is just my opinion based on my understanding and experience.
Thank you Dang. That's a very good point, I don't know if I'm "optimal", I should look into that as I took my old docs word for it. I have been taking Vitamin D, b12/folate and a women's multi, but I stopped the multi a month back when I realized it had iodine in it (iodide?). Thank you for your advise regarding the NDT, I just fear it could take months to a year to find a doc who will agree to increase my levothyroxine. Everyone is very litigious around here so most NY docs are only looking to cover themselves, not help patients. So I guess I am looking for a bridge in between...I am actively working on finding a new doc though. Most likely will be traveling, but that's ok.
I agree get rid of that idiot masquerading as a doctor.
Agree - I changed practices and was assigned my old doc much to my horror. Finding a new doc will take some time but they are all pretty much the same here anyway. She is just AWFUL.
TSH is very important, when it's as high as yours. It shows you are under-medicated. The TSH of a person on thyroid hormone replacement, should be one or under.
Stop the exercise. That is very important. Any exercise uses up your T3, and the more strenuous the exercise, the more T3 it uses. You don't have enough T3 to begin with. Certainly not enough to support exercise. You are relying entirely on converting the T4 you are taking to replenish your T3, and you aren't even taking enough T4! Your endo knows nothing about thyroid!
You need an increase in levo, that's the beginning and the end of it. You aren't even taking enough to tell how well you convert. And, until you get an increase, there's not much more that can be said. Can you not see a different endo? This one sounds terrible! 
Yes, she is terrible And her comment about the TSH horrified me. But it will take several months (waiting lists) to get in with a new one, so I think I am going to just start the Thiroyd that I bought. This is extremely helpful greygoose as I thought I was crazy. I have been doing 50 mins to 90 mins of excercise and I can't move for hours after. So my sense was correct all along that I was undermedicated. I think I bruised her ego when I told her my results. I also have a research background and told her what I thought of her TSH test. 
Good for you! 
Yes, good idea to try the Thiroyd. But, remember, with hormones, you always have to start low, and increase slowly.
Ooh, ok. I just posted this question so I apologize if I am repetitive. Should I start the Thiroyd on it's own, knowing that I am undermedicated, or should I start it while weaning off the levothyroxine? I know this is a whole 'nuther topic!
You don't need to wean off the levo. It's just T4, like the T4 in the Thiroyd, so start on an equivalent.
Difference is, there's T3 in the Thiroyd. It contains, I believe, 38 mcg T4 and 9 mcg T3. If we take it that T3 is three times stronger than T4, then one grain of Thiroyd equals something like 65 mcg T4. So, taking one grain would give you a reduction in dose. You could, therefore, start on 1 1/4 grains, and hold it for two weeks. Then increase by another 1/4, and so on until you reach two grains. Then hold for six weeks and get tested.
That would be my advice, anyway. Others might give you different advice on your new thread.
My old results from December 2016 (before I doubled the dose) were as follows:
TSH: 2.22
T4 Free: 0.9
T4 Total: 6.1
T3 Uptake: 34
Free T4 Index: 2.1
T3 Total: 85
Was I right to double the dose?
These were your results at 50mcg? While the ones you posted as an image were at 100?
If that's the case I'd say yes, and I still think you're under medicated. You need your FT4 and FT3 preferably 75% in the range on Levo alone.
Do you make sure not eat 2 hours before or 1 hour after taking Levo? And do you take it with only water? Full glass? No coffee during this time? No other supplements or medications combined?
Yes Dang, thank you kindly. I actually wake up an hour early to take my levo OR if I forget, I will wait an hour before eating/coffee. I take it completely alone. There was a point a few years back that I was taking it too close to coffee, so I started setting an alarm.
I notice youve said 1-2 hours after taking the levothyroxine before you have anything to eat and coffee! ? My endo told me to take it half an hour before breakfast but didnt say anything how long to wait before i have a coffee! I'm on my 4th tablet now ( as new to all this) have i been doing it all wrong?
My Endo also told me that eating within 30 minutes is ok, then he also said it'll only decrease absorption by "x" amount so we could increase your dose to make up for it. The long and complicated answer to an easy question made me realize why most people recommend to wait an hour, that's to maximize absorption.
I believe coffee is the same, you should wait an hour after taking Levo to have your first cup. However I don't drink coffee so maybe another member has actual experience with that, don't take my word on it.
So try your best not to eat within 2 hours before or 1 hour after taking your Levo. If every now and then you do happen to eat within 30 minutes to 1 hour after Levo it's not a big deal. But no matter what don't eat at the same time as taking Levo, or soon before taking it as this will have a big effect.
Oh no, I just usually take it early in the a.m. Like 4 or 5 a.m. (Before I get out of bed) Sometimes I will take it just a half hour before eating too if I've forgotten to take it at my bedside. I was originally told to take it at night, 30 minutes before eating/drinking anything but water and ONLY on an empty stomach. I think some of us just like to extend this to 1-2 hours out of caution, especially with coffee. But don't take my word for it, I would search the topics on this, there is probably lots of information on here. Good luck 🙂
Another quick question:
Should start taking the Thiroyd by itself, increasing in two week increments as suggested or take a fraction dose to supplement the levothyroxine? I am SO scared of feeling low again, I am just desperate to have my life back but I am open to all suggestions...
Welcome to our forum, and am sorry you are yet another female who has been let down, very badly, by doctors particularly yours as she is female who should know far more about what can happen with pregnancy i.e. sometimes it is after the birth that the mother is found to be hypothyroid.
Nowadays doses are usually too low. We are restrained by doctors not providing sufficient hormones to run our whole metabolism. They do not know or understand metabolism one iota. I'd like you to phone your Endo and ask her what the Active thyroid hormone is that drives our whole body, particularly our brain and heart. I do wonder if she knows.
We should have sufficient levothyroxine to convert to T3 (the only active thyroid hormone) T4 (levothyroxine) is inactive and has to convert to T3.
Our brain contains the most receptor cells for T3 and we will usually find it is too low. How can everything in our body work when the engine has no 'oil' i.e. T3.
Since blood tests were introduced their has been havoc worldwide in the treatment of hypothyroidism due to doctors being told that only a blood test is sufficient.
They have all lost the gift of healing by not being aware of clinical symptoms and of how we can become hypothyroid. Then the blood tests which nowadays seem to rely soley on the TSH result and being told that is what the procedure is i.e. diagnose by TSH and ignore all symptoms. We need TSH, T4, T3, Free T4, Free T3 and thyroid antibodies if not tested previously (then the person would have hashimoto's but treatment is the same).
If you've not had a recent blood test get one at the very earliest possible, fasting (you can drink water) and allow a gap of 24 hours between the last dose and the test and take afterwards. Get a print-out of the results with the ranges and post for comments.
thyroiduk.org.uk/tuk/testin...
thyroiduk.org.uk/tuk/testin...
You should also have B12, Vit D, iron, ferritin and folate tested as these if deficient can cause symptoms.
web.archive.org/web/2010103...
We have to read, learn, ask questions in order to recover our health and you, a mother, with young children to care for I feel for you as you've never been well since the birth of your first baby.
You will probably fare much better with NDT as it contains all of the hormones our body would have done if healthy. You can do a straight switchover from levo to NDT and then work up.
web.archive.org/web/2010112...
Thank you kindly Shaws. The advice of you and so many others on this forum has already helped me profoundly. It is the only way I had the courage to double my dose and demand additional blood work be done that would otherwise not have been. I was horrified to bump into this doctor again after trying to get away from her, horrified. But it makes me realize just how profoundly inept much of our medical profession is nowadays. I have decided to take a much more active approach to my Hashi's since I have been blown off for years by various docs. It is my firm belief that woman are regularly dismissed by the medical profession, and sadly, female doctors are no exception. I am only 5'1, so this weight gain has been absolutely devastating to my health and self esteem, but the most crushing symptom is the lack of energy. I truly believe that had I been listened to years ago, things might not have gotten so bad and maybe my first child would be symptom free, but I am grateful for who he is and where we are at. There's no sense dwelling on what I can't change. I am educating myself more and more each day and though it is a lonely place to be, I am extremely grateful to the kind people on this forum and others who give me hope. I am monitoring all vitamin levels and taking supplements and I think this post has given me the courage to start the thiroyd. 😊
Re your child with mild autism - did he/she have her B12 checked. Low levels of B12, in any human being, can cause severe problems.
Yes, I believe so a year or so ago. also give him a supplements, but I will definitely check again. He was very mild and unusual in that he was quite empathic and selectively outgoing. It it wasn't until preschool that we really realized it was more than Sensory issues. Looking back and after watching Isabella Wentz's series, I will admit I was overcome with grief.
I think sometimes we keep things locked up and then something just hits the cord and we cry. I am sure he is a happy child.
Struggling with hypothyroidism and seeking advice please
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Anyone here Hashi's and morbid obese?
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