Will my thyroid levels ever balance out?

This is my first post on this kind of forum, so I'm not exactly sure what to say, or even ask... When I was was 14 years old (I am now 20), I had a full thyroid removal surgery due to the gland being hyper and having many nodules and cysts in it. Since then I have been battling the constant highs and lows that come with being on what seems like every dose of synthroid out there. For the past two years though it seems like my levels just won't balance out; every 6 weeks I go in for a blood draw only to have my dosage changed yet again. I range anywhere from 112mg- which makes me feel absolutely horrible, to 137mg, which makes me feel like my chest will explode from my heart beating so fast. My endo, and primary physician are at a standstill and even though I go in for appointments every 6 weeks, they have no reason why my body won't 'balance out.' I can't handle these symptoms anymore, I constantly go from extreme highs to extreme lows (where I am at now), and I don't know what to do. Do I have to live like this for the rest of my life, or will my body eventually even out? Will I ever feel energetic and enthusiastic again? What happens if I just completely stop taking synthroid altogether?

33 Replies

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  • The problem is that you can't dose by thyroid labs and no doctor seems to know this. I am going to contact someone on here, to send you info on the right way to do it and you will have to do it on your own. Even these functional medicine doctors seem not to know. If you go on like you have been doing, you will do it the rest of your life! I'm sorry that you had to have your thyroid removed! Hang on..i will get you some info!

  • Thank you! That would be amazing.

  • See Shaws reply, further down here. I contact her on your behalf! I hope it helps.

  • Hi can you get them to send me that info also please? I would be very grateful for that advice x

  • shaws response is about 10 replys down..scroll down. Also, ask her for Dr. Lowes info on proper thyroid testing

  • Hello genuinecuriosity,

    Welcome to our forum and sorry to hear that you don't feel well.

    Have you had thyroid antibodies tested ? Even with a thyroid gland removal it is possible for minute amounts of tissue to remain and the body to create antibodies to attack.

    Missing thyroid hormone needs to be replaced, otherwise you will eventually become very ill. Thyroid meds only work well within narrow parameters and optimal levels of iron and nutrients are one. Ask your doctor to test Vit B12, Vit D, folate and ferritin.

    Thyroid meds also count on a good level of cortisol which is your stress hormone secreted from the adrenal glands. Long term low thyroid hormones will compromise the adrenal glands creating high (overworked) or low (depleted) levels of cortisol.

    Good thyroid hormone synthesis requires good liver function ( large amounts of thyroid hormone is converted in the liver) and gut health (required for absorbtion of meds & nutrients.) Also balanced sex hormones and a steady monthly cycle.

    It is important to take your thyroxine pill on an empty stomach with a glass of water, 1 hour before food, 2 hours before supplements and 4 hours before calcium, iron or vit D supplements.

    Post any recent test results complete with ranges (numbers in brackets) for members to comment.

    I hope you feel better soon.

    Flower

    This following link explains the importance of vitamins and where they may be obtained. This forum is supported by the charity ThyroidUK. You do not have to join the charity to benefit from this forum but by doing so you will be supporting the charity and also entitled to various discounts when buying supplements, as detailed in the link below.

    thyroiduk.org.uk/tuk/treatm...

    The Thyroid Glands connection to the Body.

    hypothyroidmom.com/the-thyr...

    ……………………………………………………………………………………………………………………

    Disclaimer: I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

    ……………………………………………………………………………………………………………………

  • Sorry you are struggling to level out your thyroid medication. It would be helpful if you were able to post some results with ranges of recent blood tests and then people will be able to comment.

    Without a thyroid it is quite possible you need to add in some T3 - your blood test results may reveal this if it was tested. You may not be converting the T4 tablet into the Active thyroid hormone T3. So you will need tests for TSH - FT4 - FT3.

    Also it is important to have good levels of Ferritin - Folate - B12 - Iron - VitD. When these are low - as they often are - things do not work well in the body - especially the T4 conversion to T3.

    Your Doc is not doing you many favours by constantly upping and downing your dose. So stick with this forum - there are many wise people here who will be along soon with lots of helpful suggestions.

    Whoops ! - sorry - Hi and Welcome :-)

  • okay! My next blood draw is Jan. 26th, so I will post the results hopefully a few days after! Maybe that will shed some light on issues maybe the docs aren't seeing...

  • Thank you. What tests are you hoping to have done ?

  • It's usually just the standard T3, TSH and T4 testing that I normally have done.

  • ...I would have the other tests that have been suggested too - like FERRITIN - FOLATE - B12 - VIT D. They are all very important. See Flowers post above.....

  • No idea if you are actually a doctor, but you probably are, as evidenced by your not comprehending her post. GC is 20 years old and is taking varying amounts of levothyroxine.

    If she wishes, she can write to any of us directly, via the private messaging system. Off to change my name to aRocketscientist.

    G x

  • A

    Hi and welcome 😊😊

    Am afraid many docs know little about this subject area and have been trained to go on blood tests alone. This is a port way of treating patients because the blood tests measure how much hormone is in in your actual veins they do not show the up take in the cells. There is no blood test that can do this. So it is known that doctors who treat on the TSH (blood test to check level of thyroid stimulating hormone that the brain sends to the thyroid to tell it to make more or less thyroid hormones) does not work and patients are of the underprescribed through this route and have their meds constantly changed making them unwell. Patients who are treated by their actual thyroid levels (T4 &T3) and by what symptoms they have get much better treatment. As you are in the USA? You might find changing your doc to a more sympathetic one helpful.

    It's true that it does take time to get the body sorted when on thyroid treatment but you shouldn't have to suffer like you are.

    It could be that you are either:-

    1 Intolerant of levothyroxine and need to have a different medication

    2. Need Liothyorine (T3) added into the mix

    3. Need a natural dessicated thyroid medication that includes all the thyroid hormones. There are a fair few brands out there -different ones suit different people as the fillers can make a difference to individual uptake/reaction. Some brands names are Armour, Naturethroid, Westhroid, WP.

    In your hoses I would start if you haven't already by reading up on the subject so you can understand what is happening and explain to the docs involved. Thyroid UK have an excellant book list.

    Thyroid hormones are vital for life. Without a thyroid you cannot survive long term without them. So you most certainly should never come off them long term.

    Apologies for the long post!! There are lots of really knowledgeable people on here who can offer you good support.

    Take heart you can feel better

    Hugs xx

  • Am so sorry for the errors!! Wretched predictive text in my IPad has taken over!! Hope you can make sense of it!! Xx

  • waveylines, You can Get rid of the predictive text on your ipad..... Its settings.....general.....keyboard then select the option.

    Xx

  • 😊😊Done! Thanks galathea

  • Do you always take your thyroxine at least one hour before ( or 2 hours after) eating or drinking anything? If not you may be absorbing different amounts on different days.

  • I take it first thing in the morning, and wait 45 minutes before eating breakfast.

  • Has anyone offered you any reason why your thyroid had all those cysts at the age of 14? Something must have been causing that, I would think. I second all the tests and supplements that have been recommended above, but would add that perhaps you should consider looking at underlying causes. For example, have you been properly tested for Lyme Disease and/or co-infections.

    Having been ill for 40 years, and having got my thyroid and adrenals under control I was still crashing so realised something else was going on. For me, Lyme turned out to be the underlying cause. Treating that (and any other infections/parasites) is making a huge difference for me.

    Don't stop taking thyroid meds, but read up about Natural Dessicated thyroid. That might be a better option for you as it contains all the hormones that your missing thyroid should be producing, not just the T4 that you are taking. Thyroids product T4, T3, T2, T1 and calcitonin and possibly other hormones that haven't yet been identified. NDT has them all. Synthroid is just T4. At your young age, I would want to make sure that you had all the hormones your body should be producing.

  • From what I remember, they kept me in the dark about a lot of things that were happening during that time; I think a lot of it had to do with my age at the time. As far as the nodules and cysts go, even with an ultrasound they never gave me a real reason as to why they formed, fortunately the biopsy's showed it wasn't cancerous. However, after the removal besides a few regular blood tests that was it... I don't believe I was ever tested for Lyme or any of that...

  • Consider getting tested. In my opinion, Lyme and/or-coinfections is responsible for more thyroid/adrenal problems than most people on here realised. In fact I'd take a bet that probably a majority of people on here have underlying infections. I can't prove that with research though - not yet!

  • You have my sympathy, having your thyroid gland removed altogether. It's bad enough when we still have a struggling one.

    First you have to read and learn if you want to recover your health. The fault arises because they are adjusting your doses according to the TSH alone. They never take/or know clinical symptoms which are ignored not relieved. We should be on a stable dose of thyroid hormones only very occasionally needing to be tweeked due to symptoms.

    If you've got an up-to-date blood test results get a copy with the ranges and post on a new question.

    Isn't it strange - we expect people who've studied for years then pick a Speciality which interests them to know all about the subject. Unfortunately whoever trained them failed miserably as they have not gained knowledge in 'patient care' but only on the computer result of the TSH alone. They adjust up/down/up/down to keep it within range but fail to know that if a blood test was taken every hour from 6 a.m. for 24 hours it would rarely give the same result as it varies.

    They ignore/unaware of clinical symptoms and treat them as apart from the thyroid gland and prescribe for the symptom instead of a decent dose of thyroid hormones to make the patient well, instead the suffering increases.

    The guidelines of the BTA (now updated thankfully) but they are still disconnected from research - it would appear to me that 'whatever' is plucked from thin air. I can say that because I have had personal experience of T3 being added to my T4 (and I do have a thyroid gland). Their recommendation is:-

    " Start L-T4+L-T3 at L-T4/L-T3 dose ratio between 13:1 and 20:1 by weight.

    2/+00 L-T4 can be given once daily, and the daily L-T3 dose should be divided (if

    possible) in two doses, one before breakfast and the largest one before bed"

    ***

    But research has shown this is incorrect and these are extracts:-

    Dose Selection in T3/T4 Study RCTs

    The second logical basis for a conclusion is the actions taken, i.e., the doses given to the subjects. Most subjects received T3 below its adult starting dose of 25 mcg/day. The subjects in RCTs received T3 in some ratio to the withdrawn T4.

    The various RCTs used T4:T3 ratios of 14:1, 10:1, and 5:1.

    ***

    Subject Selection in T3/T4 Study RCTs. The first logical basis for the study conclusion is subject selection. The subject selections of most hypothyroidism studies are those with thyroiditis and/or thyroid destruction by surgery or radioiodine therapy. Therefore, all of these subjects need T4. There is no note of subjects with post-thyroid deficiency and consequently would require T3.

    Subsequent research by the US National Institutes of Health (NIH) found the therapeutic equivalence was 3:1.Thus, most of the subjects were undertreated with the T3/T4 combination. In light of the NIH finding, the conclusion that T3 therapy is never needed is invalid.

    Text Analysis

    "The texts of guidelines11-18 must support the proscription of T3-containing therapies.

    However, a text analysis finds none address the potential for post-thyroid deficiencies causing the symptoms of hypothyroidism.They only consider the thyroid gland and possibly functionally preceding glands.

    Conclusion of Meta-analyses of T3/T4 Study RCTs

    The good news for the majority of patients is the meta-analyses33-35 do support the T4-only therapy for deficient secretion by the thyroid gland. The bad news for endocrinology is there is no factual support in the meta-analyses to apply the T4-only therapy to post-thyroid physiology because the meta-analyses:

    1. Ignore approximately 98 percent of relevantliterature, including studies19-22,35-41 and patient counterexamples;22,37,43

    2. Do not reconcile their conclusions with contradictory facts;

    3. Select subjects who probably did not have post-thyroid deficiencies;

    4. Provide combination therapies of lower therapeutic value than T4-only therapy; and

    5. Use statistical methods that reduce the impact of low occurrence rate phenomenon.

    tpauk.com/images/docs/reduc...

    Follow this procedure for blood tests. Get the earliest appointment and fast. Leave 24 hours between your dose of levo and the test. Take levo afterwards Always get print-outs for your own records.

    If you've not had vitamin B12, vit D, iron, ferritin and folate ask for these to be done. Our minerals/vitamins have to be at an optimum.

    If you get a copy of your most recent results with the ranges from the surgery post on a new question for comments.

    "I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions"

  • what brand of Levo are you taking? Lot of people have problems with Mercury Pharma.

  • GenuineCuriosity, I'm in a somewhat similar situation. I had my thyroid removed just under 3 years ago, and I have never got much better. I've been mostly housebound and in bed most of that time. My consultants know nothing about how to adjust my dose. For me they increased it until all my numbers looked normal, and now they just look at me in puzzlement and don't have anything to say when I visit them.

    So now I'm on the road to becoming my own doctor, learning about my illness. This forum is great for that.

    The first 2 obvious things to check are 1) Your nutrients, ferritin, folate, vitamin D and B12 all need to be in good order for thyroxine to work. Don't take your doctor's word for it, look at the numbers yourself. They need to be halfway up their ranges. 2) Get yourself a 24hr saliva test for adrenals. You will probably need to source this yourself. And if it doesn't look good, treat your adrenals. Again, your body can't use thyroxine properly without it.

    If I were you I would also be tempted to pick the one dose you've been the least bad on, and stick with it for 3 to 6 months while you get these other tests, start reading up ( stop the thyroid madness, book or website, is a good place to start). My experience has been that even though 6 weeks is the minimum time you should stay on a particular dose for your body to settle, actually a lot of settling continues to happen after that too. You may get small improvements over that time.

    You haven't mentioned quite how bad things are. Are you 80% better and we're talking minor tweaks, or more like 20%, so you need big changes?

  • Hi SilverAvocado. If you are still so ill, as with genuinecuriosity I'd wonder if there is some underlying cause for your illness that hasn't been properly addressed. I know I sometimes sound like a broken record, but I genuinely believe that Lyme and/or co-infections are the underlying cause for more cases of endocrine dysfunction than most people here can begin to realise.

    Get yourself properly tested.

  • Thanks Rosetrees, that's interesting. Do you recommend any particular book or website to find out about Lyme? Is there just one test for it or a cluster of infections?

    My thyroid was removed due to cancer. But I do wonder if there's any explanation for how I got. I was in my 30s and had follicular cancer, which is the slightly more virulent form. I had always been a tired person, and was even more tired in the 3 or so years before my diagnosis. But also when they removed the side of my thyroid that didn't have cancer it was also swollen and sore and in bad shape. I haven't really had any leads in figuring out if there could be an underlying cause.

  • I'll send you a PM

  • The average unknowledgeable doctor uses one test (TSH) and one treatment (T4). These docs also know nothing about autoimmune thyroiditis, thyroid-adrenal interaction, nutritional support for the endocrine system, and environmental health issues.

    Focusing on the thyroid only, thyroid advocates will say: (1) At a minimum, you need all of the tests TSH,FT3,FT4,rT3,TPO antibodies, TG antibodies; (2) If antibodies are elevated, you need to find out if food choices, poor nutrition, environmental issues, etc. are causing it; (3) You may have to be treated with NDT, NDT+T3, or T3+T4.

    Personally, I also went through the scenario you are describing: unable to 'balance' my thyroid levels on T4. I couldn't balance them because T4-only does not work for me, as it doesn't for many patients. I went onto T3-only for over a year to clear my system. I am now on T3+T4=15+75 mcg, which is working quite nicely.

    Your doctors may be unaware that there is what is called a "full-replacement" dose for T4. That is approx 1.7mcg/kg body weight. For instance, at 77kg, my full-replacement dose is ~130mcg, but I cannot tolerate that much T4. It is unlikely more T4 than your full-replacement dose will benefit you, and it is likely to make you feel terrible. In my case, I found that pushing T4 beyond 88mcg would drive me absolutely nuts. Backing T4 off to 75mcg, and filling in with T3 to bring TSH down to 0.5 and FT3 up into mid-range, I do quite nicely.

  • Welcome to the forum, Genuinecuriosity.

    Have you tried splitting the difference between 112-137mcg ie 125mcg?

    I was recovering after my thyroidectomy on Liothyronine (T3) for 3 months but became very unwell when I was switched to Levothyroxine (T4) and was 90% bed bound after 15 months. Symptoms improve when I was taken off T4 for 4 weeks for more RAI. Adding T3 to T4 improved brain fog and cognition but none of the physical symtoms. I switched to T3 only for 3 months to clear the build up of T4. I had palpitations and tremors within hours of resuming T4. Next day I added T3 which calmed the adverse effects and I've been fine on T4+T3 for 2 years now.

    There is research showing thyroidectomised patients lacking thyroidal conversion of T4 to T3 don't convert sufficiently on T4 and do better with the addition of T3 either via Liothyronine or NDT.

    eje-online.org/content/161/...

    thyroid.about.com/b/2010/05...

    deiodinase.org/2013/11/06/i...

    thyroiduk.org.uk/tuk/TUK_PD...

    nature.com/nrendo/journal/v...

    You will become very hypothyroid if you stop taking replacement. Please arrange alternatives before you stop taking Synthroid.My TSH was 107 10 weeks off T4 and 4 weeks off T3. I could barely get to and from the bathroom and only had the energy to microwave ready meals. It took 8 weeks to suppress my TSH again which is risky after thyCa, and several months more for FT4 and FT3 to recover. Hairloss was massive, as was dry skin shedding, and took 5 months to resolve after thyroid levels were optimal.

    As others have said, it is also important to make sure levels of ferritin, vitamin D, B12 and folate are optimal.

    _______________________________________________________________________________

    I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

  • Yes actually! The Endo, prescribed 137mg to take 6 days a week instead of 7, which I guess equaled out to about 118mg... and unfortunately that did not work either..

  • Nobody practices medicine on this site! All anyone does is offer support, make suggestions based on personal experiences, or direct others to a website which might be informative or of interest, to help them better understand their condition.

    If that constitutes practicing medicine, then my ex-GP does not practice medicine, because he never offered me support, never made suggestions based on his personal experience, and he most definitely never once tried to help me understand my condition.

  • aDoctor, Admin can edit and remove posts without notification. Members are advised to assume that no-one answering queries is a medical professional. If you want to offer a willing ear why not do it openly on the forum instead of via private messages?

    healthunlocked.com/thyroidu...

  • Some comments have been removed.

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