Hi all. This is my first time asking a question here. I'm wondering if it's possible or if anyone has experience going off thyroid medication completely after having been on total replacement dose for many years. Over five years ago, I was tired, cold, thinning hair, slight weight gain. My labs showed FT3 and FT4 were a bit low below range (TSH was 3.0) when I began my thyroid med adventures a little over 5 years ago. I have never been able to tolerate medication that puts me in the normal range for both T3 and T4. I gain a ton of weight, can't sleep and feel chest pain and generally odd/off. When my meds are at a dose where I test slightly low, I don't feel weird but I'm TIRED just like when not taking meds. Weight tends to go down as meds go down. Weight goes up proportionally with increases in meds.
I was originally on NDT and felt best at 1.75 grains of Naturethroid (felt really terrible at anything above that) and this dose was OK for a couple years but then I started to get more and more tired and my tests came back low again. Since then my Dr. has increased and I've felt bad. Then we decreased and added Levo 25 mcg. Weight won't budge after gaining 20 lbs on this dose and my appetite is pretty high. Labs came back slightly better and dr. increased again to 37.5 mcg (plus the 1.75 grains) and I'm feeling bad again and having even more weight gain.
I have also tried NDT + Cytomel (T3) and could not tolerate even a small 10 mcg dose. I felt crazy, emotional, insomnia, and couldn't stop eating. It was horrible.
The only thing I haven't tried is pure T3 or JUST Levo without NDT.
Basically, I can only tolerate meds when they are too low to put me in the range and resolve my fatigue, thinning hair, dry skin issues. But then why even take them if they are keeping me at where I was BEFORE meds?
I want off this train. If I'm going to be low I don't want to have to pay for it and also suffer side effects (not to mention the fear of losing a dr that is willing to work with my symptoms and not a slave to TSH.)
But I've heard that going off is a nightmare. Others have said once you start you're on it for life. I read that suppressing natural thyroid production kills your thyroid and the chances of it producing it's own hormone after that is low. This worries me that I'm going to reliant on taking a medication that makes me worse than I was before or at best, the same plus side effects.
My last labs:
TSH .009
RT3 13.6 ng/dL (9.2-24.1)
T3 2.5 pg/mL (2.0-4.4)
T4 1.08 ng/dL (0.82-1.77)
This was on 1.75 grains NDT + 25 mcg Levo. I wasn't feeling horrible but was still gaining weight. Since the increase to 37.5 mcg levo I feel bad again.
Any advice? Any experience with going off meds and treating 'naturally' whatever that means?
thank you!
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Question: you do realise that you cannot live without thyroid hormone, don't you? T3 is required by every single cell in your body to function correctly. Without it, you die. Not immediately, no. But, every organ in your body will gradually fail and you will eventually go into a coma and die. I can't think of a nice way to say that, but it's a long, slow, miserable death.
My labs showed FT3 and FT4 were a bit low below range
Below range is not 'a bit low'. Below range is very low. Because the ranges are unrealistically wide. And a euthyroid person would have levels of about mid-range, and hypos would need them higher - talking about the average range, here, but they vary from lab to lab, so can't guess what they were for you. But, below range is too low whatever the range.
So, another question: have you ever had your vit D, vit B12, folate and ferritin tested? Hypos often have low stomach acid, which means that nutrient levels drop. But, nutrient levels need to be optimal for thyroid hormone to work efficiently. And the reason a lot of people cannot tolerate thyroid hormone replacement and/or cannot raise the dose is because their nutrients are sub-optimal.
Another reason is adrenal problems. Have you ever had your cortisol tested?
And, what about antibodies? Have they ever been tested?
But I've heard that going off is a nightmare. Others have said once you start you're on it for life. I read that suppressing natural thyroid production kills your thyroid and the chances of it producing it's own hormone after that is low.
Thyroid hormone replacement is not a drug. You're not meant to come off it. So, yes, coming off it would be a nightmare, because you would slowly get sicker and sicker.
The famous 'others' can talk a load of c**p. Suppressing the thyroid does not kill it. Should you be forced to stop your hormone, for whatever reason, the thyroid would just go back to doing what it did before you started taking hormone. And, I speak from experience. Six years ago, I was off my hormone for six months. When I got tested after six months, my TSH was about 45, but there was still enough T4 and T3 in my system to keep me going - and my thyroid had been pronounced dead due to Hashi's ten years previously! Yet, it still stepped up and kept me alive.
So, that is not the reason that thyroid hormone replacement is for life. The reason is because you need it to keep alive.
Any experience with going off meds and treating 'naturally' whatever that means?
Yes, exactly, what does that mean? 'Naturally'. One of my least favourite words in the English language. Toadstools are natural, but I wouldn't recommend you eat them. Same for belladonna. It's one of the most meaningless words in the English language - at least, the way most people use it. There is no 'natural' way to replace a missing hormone except by taking another hormone - well, the same one, actually, but exogenously instead of endogenously. You cannot replace a hormone with a vitamin or a mineral. And, once the thyroid has started to fail, for whatever reason, there's nothing you can do to bring it back to full life. And your thyroid would appear to have been on it's last legs with FT4/3 below range, even though your TSH wasn't very high - or were you diagnosed with Central Hypo?
So, one last question: how do you take your thyroid hormone? Do you take it on an empty stomach, leaving at least one hour before eating or drinking anything other than water? Do you take any other medication/supplements at the same time? And, how do you do your blood tests? Early morning - before 9 am - and fasting over night? Do you leave 8-12 hours between your last dose of NDT and the blood draw? That was a bunch of questions, but never mind. Every little detail helps.
Wow, thank you greygoose and everyone for your responses! You are such lovely people!
It probably would have been better had I posted less complaining and more explaining about my history and this six-year excursion that has involved all health concerns mentioned here! The thyroid was only one piece that was addressed, but it is the ‘remedy’ that has caused the most misery for me, which is why I post here.
Sorry, this is going to be looooong! You said every detail helps greygoose, so here goes!
I have been working with a holistic integrative doctor who ONLY works with thyroid and hormones. She is adamant about natural thyroid meds (and all hormones) and rarely prescribes Levothyroxine or synthetic hormones, but will do so as a last resort if all other effort have failed and the patient responds well. She regularly sends people to consult Stop the Thyroid Madness (stopthethyroidmadness.com) if you are familiar with that. She often puts patients on a straight T3 therapy protocol. She is not a fan of synthetic hormones, period. This doctor is treating all my hormones (I’m 47 and two years past menopause. More on this later).
My doctor does not care at ALL about TSH and often doesn’t even test for it. The highest TSH while on NDT has been is .4 (and my T3 was low when TSH was at this level). Usually it is .008 and has been as low as .0004 when I was on 2.5 grains NDT.
Also interesting is that my doctor also takes NDT, is about my height, and says she gets similar bad symptoms as I do (see end of this message) when she goes over 1.5 grains. The difference though is that at 1.5 grains she is in the middle of the range for T3. When I’m at 1.5 grains I’m waaay below range. For a long time I could tolerate 1.75 grains but that put me riiiiight at the cutoff of the low part of the range for T3. T4 was below range. Lately, 1.75 grains has me below range for both and I’m tired on this dose now.
The doctor said she almost never prescribes T4 only, but has a few patients that only do well on T4 only protocol and cannot tolerate any form of T3. These people convert nicely and have no side effects from T4.
I have never tried T4 only so have no idea. Tests show that the additional T4 I have been taking has been converting to T3 as evidenced by increase in FT3 levels after 6 weeks.
At this point, six years in, I have spent tens of thousands of dollars out of pocket for testing, doctor visits, treatments, supplements and meds because none of it is covered by my insurance which I also pay for. The US health care system is broken, but don't get me started! I’m flat broke now.
In case this matters and why I wonder about the whole premise of going on meds in the first place:
When I was diagnosed with hypo (when both T4 and T3 were slightly out of the published range) this was a couple months after I finally was recovered from a year-long battle with a reoccurring kidney infection, for which I had been hospitalized (for five days) and had been on antibiotics (both IV and oral) for nearly 6 months straight.
Before going no thyroid meds, we did was addressing gut issues. Thousands were spent on testing and a nutritional and supplement regimen was put in place and retesting every couple months, etc., etc. Testing results were good, gut was healing nicely. Also did the whole allergy and food sensitivity testing, etc.
Gut is in pretty good shape now, as far as we can tell.
One of the reasons I question whether or not I should have been put on a lifelong regimen of thyroid meds is because I learned many years later that acute infection and sometime chronic infection can drive thyroid hormones down temporarily while the body is fighting the infection. So, there’s that. But before the infection, I was often tired and my hair was recently thinning, often had dry skin, cold, so the pieces fit with hypo.
I also have tested high for inflammation markers, but that could be all kinds of reasons. I have read that inflammation can cause thyroid issues that can resolve when inflammation is addressed. I have no idea if this is true.
All this stuff about infection and inflammation might all be irrelevant, but thought I’d mention it. It’s all part of the big picture.
CORTISOL/ADRENAL:
At the same time that we were addressing gut issues, the doctor checked cortisol via saliva because she said she wouldn’t treat the thyroid without treating adrenal issues first if they are present. My cortisol was slightly low in the morning and slightly high at night and we supplemented with hydrocortisone pills, low dose, which made me feel similar to how I feel on thyroid meds (strung out and lots of bloating and weight gain), for six months, after which I was tapered off and re-tested with the results being in the acceptable range. With relief, I was able to get off the dreaded hydrocortisone.
FOLATE:
I had pretty extensive genetic testing from which was revealed the MTHFR mutation (don’t remember which one, but it’s the one that causes low SAM-e, low Glutathione, high homocysteine and reduced ability to methylate folate). I take high doses of good quality glutathione, 800 mg of good quality SAM-e and prescription methylated folate (Deplin) in the amount of 22.5 mgs, which is a large quantity. It has been transformational and all my methylation test results (including cortisol) have improved hugely to the point of actually being ‘normal’ now. Folate levels are in mid-to-high range now.
Cortisol is also in range now.
VITAMINS TESTING:
Besides the methylated folate and SAM-e deficiencies, which have been addressed----
I was tested for vit D and it was super low (this was six years ago) at 13 (should be at LEAST 40). Been taking prescription strength D3 since then and it has been around 58 for many years now.
B12: tested low and was injecting methylated B12 for a year and then transitioned to high dose methylated tablets, which I still take. Can’t find the lab results, but my last B12 test showed five times over the highest number in the range.
CoQ10 slightly low and have been supplementing.
Iron and Ferritin: Don’t have the numbers, but my doctor is vigilant about keeping these not just within range, but optimal. She said they are fine.
Not sure if this is important, but this is consistently high (in the ‘intermediate risk’ for heart disease):
NT-proBNP (pg/mL) 353 (<125)
Cholesterol is good.
INSULIN:
Recently, I requested a comprehensive insulin resistance test, not just testing for insulin and glucose, but these were also tested.
This test is called the lipoprotein insulin resistance test:
LP-IR Score <25 (<=45)
I tested well below 45, which is considered not insulin resistant and not even borderline.
Glucose, Plasma 79 mg/dL (65-99)
(Prediabetes range is 100 - 125
_
Hemoglobin A1c 4.9 % (4.8-5.6)
Insulin 6.5 uIU/mL (2.6-24.9)
THYROID ANTIBODIES:
Tested negative for Hashi:
TG Ab 22 UI/mL (<115)
TPO Ab 12 UI/mL (<34)
IGF-1 HDL 168 ng/mL (78-256)
Again, here are my recent THYROID NUMBERS:
TSH .009
RT3 13.6 ng/dL (9.2-24.1)
T3 2.5 pg/mL (2.0-4.4)
T4 1.08 ng/dL (0.82-1.77)
***This was on 1.75 grains NDT + 25 mcg Levothyroxine.
HORMONES:
I take bioidentical sex hormones (E2, Progesterone, and Testo). I am two years past menopause (at age 45).
For the past several years my E1, E2 and E3 have been within normal range for pre or perimenopause. Occasionally estrogen would fall in the low part of the range. A year ago, E2 (which is the one I take) tested in the high range for the first time ever, but normal. This was 1 year PAST the start of menopause (past 12 months no menses). Just a month ago, E2 tested way high, (even at premenopausal ranges). E3 was within range. I totally stopped my E2 cream upon seeing these results in order to let it come back down. Not sure why it went high when I’ve been taking the same dose of cream for three years. Worried about ovarian tumors. Could just be a weird formulation of the cream, which is compounded at a pharmacy.
Testosterone is always low, no matter how much I take (probably converting to Estrogen), but it is ZERO if I don’t take any testo cream.
Testosterone: .8 (2.3-14)
Estrogen:
Estrone(E1) Above luteal range 28.2 ng/mg (12 – 26)
Estradiol(E2) Above luteal range 10.19 ng/mg (1.8 - 4.5)
Progesterone:
My progesterone has always, always been low, since I was in my 20s. I don’t tolerate very much progesterone cream, so I’ve never been able to boost it without bad side effects.
b-Pregnanediol Below luteal range 512.0 ng/mg (600 – 2000)
a-Pregnanediol Below luteal range 137.0 ng/mg (200 – 740)
DHEA-S: 73 ng/mg (20-750)
I cannot take DHEA-S supplements even in low dose of 10mg – get agitated and lost hair in clumps. Won’t do it again. 5 mg was OK, but didn’t seem to have much benefit.
SHBG tested high:
SHBG 139 nmol/L (20-130)
(Side note: The higher my thyroid meds, the higher this number seems to go.)
HOW I TAKE THYROID MEDS:
Have changed it up over the years (split doses 2/day, 3/day, 4/day, only in morning, etc.). Due to sleep issues, I take all my meds first thing in the morning (before getting out of bed), obviously on empty stomach, with full class of water. I do not drink coffee for at least 1 hour after. I wait at least 1.5 hours to eat. I take NO supplements/vitamins until at least 4 hours after, usually more like 6 or 8 (afternoon).
HOW I TEST FOR THYROID:
24-hour trough for all thyroid meds (I take meds in morning 1/day). Fasting, first thing in morning. Take meds after. Same thing every time, per doctor instructions.
HISTORY OF THYROID MEDS:
The short story is that I have been on NDT-only protocol for almost six years with recent addition of small amount of T4. The higher the dose and the higher in the range of FT3 and FT4 on labs, the worse I feel. Conversely, when T3 and T4 are super low, I also feel bad, but feel bad differently.
When my blood levels are in mid-to-high range I feel TERRIBLE. Strung out like I’m doing drugs, can’t sleep, tired and wired, pounding heart (although RHT is normal), anxiety, agitation, short-tempered, HUNGRY, and FAT. The worst I’ve ever felt was when my T3 and T4 were ‘optimal’ in high part of range. I slept no more than 5 hours a night (ever!) for five months. I took sleeping pills and melatonin every night just to get 4-5 hours of sleep.
Important--- part of what is making me so frustrated: I was at a normal weight when I started this journey at 114 lbs (5’1” tall) or 51.7 kg. Very consistently, I gain weight as my blood levels of T3 go UP. The higher in the range I go, the higher my weight. I can track it like clockwork. Each increase results in more weight.
When T3 was in the mid-high part of the range and T4 was above midline, I had gained over 40 lbs (2.9 stone) from my normal weight. When I decrease meds and blood levels go down, I lose weight, albeit very slowly. I have committed to lower calorie diet, whole foods ONLY, am vegetarian, and it doesn’t matter. It’s also very difficult to maintain because my appetite increases the higher my thyroid levels are. But I’ve stuck to it with no weight loss. If I eat in the way that I would have normally in the past lost weight, I can maintain or slow weight gain somewhat.
I have controlled my food intake in all kinds of ways that I won’t waste time talking about, IT DOES NOT MATTER ONE BIT.
But when I decrease meds and T3 levels are low, I lose weight, mood is normal, but I’m tired as hell (body tired, like dragging my body around).
If levels go very low, then I start gaining weight again (while hardly eating, but as least my appetite isn't crazy).
NDT + Cytomel (straight T3, synthetic) was a disaster. I was almost violent in my mood. More rapid weight gain.
Sleeping badly.
Now I’m on NDT 1.75 + Levothyroixine 37.5 mcg. Starting to feel edgy, strung out, sleepless, gained another 5 lbs. Also, hair starting to come out gradually. Not in chunks, but it’s noticeable. According to my fitness tracker, my RHT has gone from 62 BPM when I was on just 1.75 grains NDT to 69 BPM with the additional 37.5 mcg of T4. My metabolism has not budged. Still gaining.
Interestingly, my T3 levels with the additional Levo are at the same place as they were when I was at 2.25 grains NDT and I’m tolerating it much better. Not sure why? Maybe more consistent delivery to blood/cells?
I’m at my wits end. I work almost full time (35 hour/week) and I’m in graduate school. I can’t handle this anymore!!!!
I know, of course, that the body will die without T3. My inquiry about going off meds is that I was a little below range before starting meds. When I’m taking a dose of NDT that I can tolerate, I am at the exact same level. Exactly the same. So my body naturally produces what I’m putting in by way of medication, which suppresses the natural production of the same amount of hormones. If I increase meds so that I’m in optimal range, I feel horrible and can’t tolerate it. This is my dilemma.
I feel screwed no matter what. I cry all the time about this and don’t know what to do.
OK! That's a lot of detail! lol But, let's have a closer look at it and see what we can pick out of interest...
She regularly sends people to consult Stop the Thyroid Madness (stopthethyroidmadness.com) if you are familiar with that.
Yes, I am familiar with it. And I'm not a fan. They get a lot of things wrong, you know. And, they are so dogmatic about NDT. NDT does not suit everyone. It made me very, very ill. I ended up a bed-bound whale! I put on over 30 kilos. Whereas, before, on synthetic T4 + T3 I had been losing it. I slowly went up to 6 grains, and still felt very ill and hypo. Now, I'm on T3 only, and much, much better for it. Have you tried T3 only?
My doctor does not care at ALL about TSH
Most of us here don't care about TSH, either. But, the NHS - this is a UK based forum - only cares about TSH! And, although it didn't used to be like that in France, where I live, it is becoming more and more that way, unfortunately.
However, it does sound as if your doctor is rather hooked on blood tests in general, all this talk about 'optimal ranges', when the truth of the matter is that everyone's 'optimal range' is different. Our results should be where they make us feel well. You shouldn't be aiming for any particular number. The protocol should be starting low, and increasing slowly until you feel well. So, if there has been a dose on which you felt well, then it would have been advisable to stick to it.
One of the reasons I question whether or not I should have been put on a lifelong regimen of thyroid meds is because I learned many years later that acute infection and sometime chronic infection can drive thyroid hormones down temporarily while the body is fighting the infection.
Yes, that can be so, but what happens is that the conversion of T4 to T3 is affected - more T4 is converted to rT3 than T3, forcing the body to slow down. So, in that case, the FT3 might drop to under-range, but not the FT4, I don't think. If you weren't actually hypo. The FT4 would stay at a good level.
Been taking prescription strength D3 since then and it has been around 58 for many years now.
Without a range, I don't know how good that is. But, if you're taking vit D, are you also taking its cofactors: magnesium and vit K2-MK7? If not, you really should.
then transitioned to high dose methylated tablets, which I still take.
And, again, if you are taking B12, you should also betaking a B complex, because all the Bs work together and need to be kept balanced.
How about zinc?
Cholesterol is good.
Cholesterol is irrelevant.
Due to sleep issues, I take all my meds first thing in the morning (before getting out of bed)
Not 100% sure what you're saying here, but by 'meds', do you mean all your thyroid hormone? Nothing else? Saying all my 'meds' is a bit ambiguous.
Some people find that they sleep better when they take their hormone before bed. Have you ever tried doing that?
HOW I TEST FOR THYROID:
24-hour trough for all thyroid meds (I take meds in morning 1/day). Fasting, first thing in morning. Take meds after. Same thing every time, per doctor instructions.
Well, actually, with NDT and T3, it's usual to leave a 12 hour gap, not 24 hours. So, rather looks like you've got false low results, there.
THYROID ANTIBODIES:
Tested negative for Hashi:
How many times have your antibodies been tested? You cannot rule out Hashi's on the basis of one negative test. And, in fact, 1 out of six people with Hashi's never have over-range antibodies, So, the only way to rule it out completely is to have an ultrasound of the thyroid.
IGF-1 HDL 168 ng/mL (78-256)
Does your doctor not consider that to be a little low?
Well, that's all that jumped out at me, but I don't know if any of it is of any use to you. Finding the right sort of thyroid hormone replacement, and the right dose, is all trial and error. And, we have to keep trying until we find the right combination for us. We're all different and have different needs. So, don't give up. I'm sure you'll find it one day.
Hi greygoose. Thank you so much for taking the time to read all this.
Sorry for the delayed response, I am not doing well. A few days ago I increased the Levo to the recommended 50mcg (first started with 12.5, then 25, then 37.5, now 50) and I feel terrible. On the second day I decreased the NDT to 1.5 grains b/c I felt I was going to have a heart attack (chest tight, increased heart rate). The 3rd day, today, I slept 5 hours (on sleeping pill) which has been usual since adding Levo and woke up to a resting heart rate of 80, which is not normal for me. I feel flu-like, hotter than hell, but weak. My throat feels weird and I have the most intense headache I've had in a while. My eyes are very puffy and so are my hands. I don't feel like I have an illness, just very weird with flu-like symptoms.
I like my dr but I can't afford to talk to her as often as is needed (she charges $500/hr even on phone, and requires a minimum 30 minute appt) so I have to wait this out a bit, but I don't know what to do. I'm thinking about just stopping the Levo and going back to the NDT dose that feels too low but at least doesn't feel horrible.
Let me try to answer some of your questions.
About STTM, I agree, absolutely. My dr. suggested it very lightly and said they get some stuff really wrong and to take it with a grain of salt. She likes the info they give about vitamins and such.
D3: I'm sorry, I can't find the lab at the moment, so I don't know the ranges. I do know that 40 was the minimum and my dr said she would like me around 60. That's all I remember.
are you also taking its cofactors: magnesium and vit K2-MK7
Absolutely. There is hardly a supplement I'm not taking. I take two kinds of Magnesium for a total of around 500 mg./day. I take vitK2-MK7, selenium, zinc, and iodine 6.5 mg. I used to take 12 mg of iodine but dr. but it down. I've read varying info about whether or not to take iodine when on thyroid meds.
The protocol should be starting low, and increasing slowly until you feel well. So, if there has been a dose on which you felt well, then it would have been advisable to stick to it.
The problem is that the NDT dose that I felt well on for a long time (1.75 grains) , I stopped feeling well on, labs confirmed low out of range lining up with my hypo symptoms and we increase to 2 grains and I started to feel weird again: mood really bad and rapid weight gain, insomnia.
This is why we started experimenting with adding Cytomel, which made every thing way worse, to dropping that and adding Levo, which I'm also not feeling well on.
And, again, if you are taking B12, you should also betaking a B complex, because all the Bs work together and need to be kept balanced.
Because of the MTHR mutation, I'm not allowed to take folic acid (folate) that is not methylated. My dr said taking any Bs that aren't in the active form is bad for me because my body can't use it and also can't break it down so I've had to search high and low for a B complex that is all active vitamins and finally found one about two months ago, so I'm on that now.
Tested negative for Hashi:
How many times have your antibodies been tested?
I've been testing three times since we started six years ago with similar results. My dr thinks it's not that necessary to know b/c hypo and hashis requires the same treatment: thyroid hormone replacement.
IGF-1 HDL 168 ng/mL (78-256)
Does your doctor not consider that to be a little low?
I seem to remember her mentioning that this was low and offering some supplement or something that was hugely expensive and I passed on it. I don't really know what this is or anything about it or what it being low indicates.
Well, actually, with NDT and T3, it's usual to leave a 12 hour gap, not 24 hours
Yes, true. She was trying to manipulate the test somewhat b/c my PCP gets the results and was having a fit over my low TSH. She was trying to get it to be as high as possible But it really doesn't make much difference. In fact, the 12-hr trough and the 24-hr trough looked remarkably similar across all hormones. Since I only take my thyroid in the morning, this also makes sense for me to not take it differently the day before the test.
Not 100% sure what you're saying here, but by 'meds', do you mean all your thyroid hormone? Nothing else?
Yes, sorry. I ONLY take NDT and Levo when I first open my eyes in the morning, with a glass of water. Nothing else.
I'm on T3 only, and much, much better for it. Have you tried T3 only?
It's interesting to me that you did well on synthetic T4+T3 but didn't do well on NDT--perhaps the ratios were not right for you? Was there a reason you were taken off the T4+T3?
I have not tried just T3. I'm scared to because my one experiment with taking a small dose of Cytomel (on top of 2 grains of NDT) make me CRAZY. I was traveling at the time and I felt like a strung out confused person who couldn't make it two hours without eating another meal and then not sleeping well. Gained 7 lbs in five days, probably because I couldn't stop eating. My metabolism definitely didn't adjust upward to compensate. 'm afrad to try agan.
'm havng werd compter trole and need to start a new reponse, nothng s typng rght.....
Some people find that they sleep better when they take their hormone before bed. Have you ever tried doing that?
I have not tried this. I'll look into it. Usually I feel the T3 hit my system about 2-3 hours after taking my morning dose, so worried that will wake me up, but who knows. Willing to try anything!
About my post infection labs:
If you weren't actually hypo. The FT4 would stay at a good level.
Both T4 and FT3 were low.
I'm interested in hearing more about taking just T3. My doctor is willing to put me on this regimen, in fact she suggested we try it. It worries me to not take ANY T4. Any time I'm taking thyroid meds, my own production is pretty much 0, so I wouldn't be getting any T4. I know it's inactive, but there are a lot of different medical opinions about the usefulness of T4 on its own (like I've read that the brain usesT4, without converting to T3, but I don't have a lot of info about that).
But whatever, I'll do what I need to do to feel better. I worry though that going on medication that is very controversial among doctors, even more than NDT, is risky, but whatever!
Last thing! I swear! lol. I thought I would mention that since increasing my NDT about a year ago, not only have a gained a huge amount of weight, but I've also for the first time in my life have peripheral neuropathy, to the point of having trouble using my hands to grip and to type. Also have it in my feet and calves. Not sure if it's related at all, but thought I'd toss that out there too.
Greygoose, thank you! I know this takes a lot of time to read and think about and you are super amazing for the help you're provided. <3
here is hardly a supplement I'm not taking. I take two kinds of Magnesium for a total of around 500 mg./day. I take vitK2-MK7, selenium, zinc, and iodine 6.5 mg.
OK, we have something here. You're taking too much magnesium. For women it should be around 350 - 400 mg a day. And you should not - repeat not - be taking iodine. On 1.75 grains NDT + 50 mcg levo you will already be getting 83 mcg iodine, which is recycled in the body, plus what you get from your food. As your thyroid isn't even making hormone at the moment - or not much - you need less iodine, not more.
A few days ago I increased the Levo to the recommended 50mcg (first started with 12.5, then 25, then 37.5, now 50) and I feel terrible. On the second day I decreased the NDT to 1.5 grains b/c I felt I was going to have a heart attack (chest tight, increased heart rate).
I've probably forgotten but I don't understand why you're taking levo with NDT, anyway. Your FT4 isn't that low, but your FT3 is. And, by reducing the NDT, you will have reduced your T3 even further. OK, just read the explanation for that, but even so…
My dr thinks it's not that necessary to know b/c hypo and hashis requires the same treatment: thyroid hormone replacement.
Well, it is necessary to know because it explains fluctuations in levels. If your Frees suddenly shoot up over-range and your TSH drops to suppressed, what is she going to think? Most doctors just think you've been 'abusing your meds' and slash your dose because they have no idea that that is how Hashi's works. So, you at least should know.
IGF-1 HDL 168 ng/mL (78-256)
IGF1 is an indicator of Human Growth Hormone levels. HGH is a pituitary hormone, but you need good levels of T3 for the pituitary to produce it. Catch 22: you also need good levels of HGH to convert well. So, it's pretty important - and causes horrible symptoms if it's low - but it's rare for a doctor to test for it - or even know what it is!
I know of no supplement that can raise it, what one usually needs is HGH injections - which are hugely expensive and hugely complicated - but, boy! are they worth it!
Yes, true. She was trying to manipulate the test somewhat b/c my PCP gets the results and was having a fit over my low TSH.
Oh, goodness! Surely she must know that leaving an extra 12 hours isn't going to have any impact on your TSH!?! It doesn't move that fast. All it's going to do is give you a false low FT3.
Since I only take my thyroid in the morning, this also makes sense for me to not take it differently the day before the test.
It doesn't really, no. It won't hurt you to take it differently for one day. And it will give you a more accurate FT3 - which seems to me the most important goal.
It's interesting to me that you did well on synthetic T4+T3 but didn't do well on NDT--perhaps the ratios were not right for you? Was there a reason you were taken off the T4+T3?
I wasn't 'taken off', I'm not that passive. It was my decision to try Armour. I'd heard so much good about it. But, although the ratios weren't right for me, I don't think it was just that, because before T4+T3 I'd been on T4 only, and wasn't as very ill as I was on NDT.
Gained 7 lbs in five days, probably because I couldn't stop eating. My metabolism definitely didn't adjust upward to compensate. 'm afrad to try agan.
What you gained was water retention - you can't put on 7 lbs of fat in five days, even if you eat non-stop. That could have sorted itself out had you continued longer. Your increased hunger was probably a good thing because it would have increased your nutrients - we get hungry for a reason.
'm havng werd compter trole and need to start a new reponse, nothng s typng rght.....
No, you don't have a troll. What happened there was that when you typed 'I', instead of putting your finger on 'Capitols' you put it on 'Ctrl' and thereby changed your font to italics.
You're taking too much magnesium. For women it should be around 350 - 400 mg a day. And you should not - repeat not - be taking iodine.
Oh, OK, I will decrease magnesium and see if that helps and will drop the iodine. I have long suspected that it isn't necessary and might be making things worse. Thx.
And, by reducing the NDT, you will have reduced your T3 even further.
I know, but I'm at a loss as to what to do. The additional T3 made me insane. But maybe it was too much with the 2 grains of NDT. Perhaps I should have dropped the NDT and kept taking Cytomel? This is my next plan of action I think. Or dropping NDT altogether and just taking Cytomel.
I wasn't 'taken off', I'm not that passive. It was my decision to try Armour.
Yes! Love that. My language was around the fact that most doctors don't give a toss what we want and try to force meds (on or off) and many are desperate and their drs are not flexible. I'm glad that didn't happen to you or that you pushed back.
What you gained was water retention
Some was definitely water retention, but I was consuming probably twice the calories my body needed and the weight never went away after dropping the Cytomel, which I suspect it would if it was caused by the medication change. Does Cytomel cause water retention? That's what I feel is happening now also, with puffy hands, ankles and face. I suspect that my increased eating did not result in more nutrients, as i was eating almost all sugar, sugar, sugar and white flour. I had no desire to eat anything but sugar which is usually not even in my diet with the exception of whole fruit. It was really weird. I had to make a huge effort to get nutrient dense food in me. The sugar cravings is what prompted me to get the insulin resistance test.
Oh, goodness! Surely she must know that leaving an extra 12 hours isn't going to have any impact on your TSH!?!
Yes, I would not think that it would change that fast and I will definitely do what you say and take half my NDT in the evening and do a 12-hour trough. Interestingly, my dr's last lab requisition said '12-hour trough' and I just figured she forgot that I only take it in the morning, but I'll take advantage of that and do the 12-hrs.
Thank you again greygoose! That was a lot of time to dedicate to a stranger, I appreciate it so much.
And I'm glad that I don't have a troll in my computer! lol.
I don't know if reducing the magnesium is going to make you feel better. But, the iodine is probably making things worse, yes. So, cutting that out could have a positive effect.
I think trialling T3 only could be a good idea. But, you must start low - in your case I would say 20 mcg - or lower - and increase slowly. You can increase by 5 mcg every two weeks. But, stop and hold for six weeks occasionally, then retest to see where you are. If it doesn't work out, you can always go back to NDT, or whatever you like. But, there's always a possibility that T4 doesn't work for you. It didn't for me. Not on it's own, with T3 or in NDT - especially not in NDT! I only got better when I got off it completely. I don't know why that is. But, on two occasions, since going T3 only, I have tried to add in small doses of T4 to my T3 - closely controlled experiments. After a while I am forced to stop the T4 because I feel myself sliding backwards. And, the strange thing is that I convert perfectly! So, it's not that the problem. And, I've been told, I'm not alone in that reaction. So, give it a try.
You're right, most doctors don't give a toss. But, my situation was more complicated than that. NDT is illegal in France, where I live, so I had to actively seek out someone who would prescribe it, and then get it from Belgium. So, it was a very active decision on my part.
As to the water retention, it's very easy to put it on, but not so easy to get it off! Not as simple as just stopping whatever made you put it on. Have you ever heard of mucin? It's a gluey substance that is part of the skin. Hypos have extra mucin in their skin, and it attracts water and holds it. So, a lot of the weight-gain when you're hypo is due to that, rather than fat. Have a look at this thread:
"Since I only take my thyroid in the morning, this also makes sense for me to not take it differently the day before the test."
"It doesn't really, no. It won't hurt you to take it differently for one day. And it will give you a more accurate FT3 - which seems to me the most important goal."
Now, this will sound like I am arguing, which I'm not. Just trying to get it clear in my mond. In my mind, it is just as accurate whenever you do the test - it's just a snapshot of what is going on at that moment. If I do the test shortly after taking my meds, the test is accurately reflecting the meds in the system (good, lol, that's why I'm taking them!!). If I do the test just before taking NDT, it is accurately reflecting the fact that I'm running low and need to take more. So, what we're really saying is that we think that meds 8-12 hours prior is the most useful time to take that snapshot? Do you know why specifically that? Also does it matter if I take a big dose in am and a tiny dose in pm? They are capsules so can't be adjusted to be more even.
Yes, you're perfectly right. But, due to the half life of T3, leaving a 12 hour gap is more likely to give us an accurate picture of our average circulating hormone. Which is more likely to give us an idea of whether we're on the right dose. No system is perfect. But that one seems to give the most satisfactory results for recovery.
I can't tell you if it matters if you take a big dose in the am or a tiny dose in the pm, and I doubt anyone could with any accuracy, because I doubt much research has ever gone into it.
IGF1 is an indicator of Human Growth Hormone levels. HGH is a pituitary hormone, but you need good levels of T3 for the pituitary to produce it. Catch 22: you also need good levels of HGH to convert well. So, it's pretty important - and causes horrible symptoms if it's low - but it's rare for a doctor to test for it - or even know what it is!
I know of no supplement that can raise it, what one usually needs is HGH injections - which are hugely expensive and hugely complicated - but, boy! are they worth it!
So, assuming of course that injections are not possible, are there any other solutions for low IGF1?
Why aren't the injections possible? Because of the cost? Well, the only other thing you can do is raise your FT3 and see if that helps. My hormone specialist did say things like: make sure you don't eat after 7 pm; sleep in a totally dark room; and other things that I've forgotten (I'll see if I can find my notes) but none of them worked.
greygoose has given excellent advice. Those professionals who are supposed to look after us and be knowledgeable are very unknowledgeable except to look at a TSH result and pronounce that we're on too much if it goes below 1 - in actual fact they might say we're now hypERthyroid and lower our dose when, in fact, we probably need an increase.
They rarely test Free T4 and Free T3 and these are most important. This link explains why.
Levothyroxine is T4. T4 is an inactive hormone and has to convert to T3 - the active hormone. T3 is needed in the millions of T3 receptor cells in our body and brain and heart need the most. I doubt few doctors are aware of this fact. This is the reason some of our members get a private blood test which includes the FT4 and FT3.
'Naturally' would mean taking the very original thyroid hormone i.e. NDT (natural dessicated thyroid hormones) and in the UK they've remoed this from being prescribed due to making False Statements about it, despite it being the very first replacement since 1892 which from then on saved lives. Before that we died. Maybe the following link will help but I know what it's like to be fine for some time then we don't and I wonder if some changes to the fillers/binders in the replacement affects us badly.
In 1892 there were no blood tests and there were none until the introduction of levothyroxine and blood tests in the 60's I believe. Maybe the following will be helpful and was by one of TUK's Advisers who died through an accident.
Thank you shaws. I searched high and low for a good doctor when I first started having female hormone issues and am lucky to have found the one I did. I pay hugely for it monetarily out of pocket, but she is great. Only concerned about my health and symptoms. Doesn't even usually test for TSH very deliberately, because test results are shared with my primary care physician who goes nuts when he sees my .009 TSH. PCP demands to know why this doctor is deliberately 'keeping me hyper'. My thyroid dr told me to tell him to call her and she'll explain it to him, but he hasn't taken her up on it, lol. He is constantly recommending that I go see 'a real endocrinologist' and suggests that I'm going to cause heart trouble, bone loss, etc. When he sees the FT3 and FT4 numbers, he scratches his head and proposes that I have a pituitary problem. No one has checked that.
I'm sure you're doctor would be inundated if members found out her name. Some doctors have the knack of getting their patients well and she sounds like she treats her patients as Dr Skinner and Dr Peatfield did and who were trained in symptoms. Many hypo patients would do much better if the professionals took more notice of remaining symptoms and ensuring relief of them by proper increasing and also being able to switch from levo to another thyroid hormone, except in the UK they've now removed all alternatives. Surely that must cost the NHS much more money as patients have to attend the surgery more often due to remaining symptoms and probably getting other 'prescriptions' for the symptom rather than ensuring TSH, FT4 and FT3 are optimum.
There could be other things involved here, such as high or low cortisol, insulin resistance, and also sex hormone imbalance - or a combination of all those things. I don't know how old you are, but estrogen dominance can wreak havoc on the body and cause many of the symptoms you mention, notably weight gain and moodiness. Estrogen will bind thyroid hormone so making you more hypo, so it's important to have sex hormone levels checked and the estrogen to progesterone ratio established. Insulin resistance will also lead to fat storage and weight gain. So my advice would be to try to get more tests to get a clearer overall picture - privately if no other possibility.
The only people I could imagine would ever be able to go off thyroid hormone replacement would be those who only suffered from temporary or transient hypothyroidism...not sure there is such a thing, though! If you have autoimmune thyroiditis (Hashimoto's disease, by far the most common cause of hypothyroidism), the treatment is usually life-long. The same goes for people who have been treated with radioactive iodine.
Even if the cause is secondary or tertiary hypothyroidism (when the problem is not with the thyroid gland itself), thyroid hormone replacement is usually required for life.
Hi thecat68. Thank you for your message. See my suuuuuper lengthy response to greygoose. Short version: No hashis. Have estrogen dominance (recently stopped cream for this reason), high SHBG. No IR, cortisol normal now.
"temporary or transient hypothyroidism" This is what I wondered about because of my year-long kidney infection that was resolved about 2-3 months before thyroid tests showed hypo.
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