My mother is severely hypo and was untreated while she was pregnant with me. I’ve been hypo literally my whole life, though I was misdiagnosed earlier in life until I figured it out myself 1yr ago after a couple miscarriages and 18 months of creeping weight gain.
I take 120mg or 2 grains of Thyroid-S (although I have ERFA too). My cortisol is low, so I also treat that so the Adrenal Cortex Extract. I take a daily basal body temp with a glass thermometer (Dr Broda Barnes method) to track both thyroid function and adrenal function. Temps should be 36.4°-36.6° to indicate good thyroid function (lower indicates hypo), and the temp from day to day should be consistent or within 0.1° to indicate good adrenal function. My temps are low and bounce around a degree or more sometimes. I know adequate cortisol levels are needed to get the T3 into the cells. So I think this is my problem.
I recently discovered I am lactose intolerant (I get terrible low back pain from milk or cheese) even though I’ve been mostly dairy free since December. I have been gluten free since September, so over 6 months.
My ferritin was a bit low last check at 29, so I have ordered Simply Heme supplement though I eat a lot of red meat. My D was 53 which is on the low end of normal. B12 was 760.
Up until now my TSH has bounced around from 3 - 11 (I did a lot of blood tests prior to starting NDT around Dec 21, 2023.)
My antibodies are consistently very low (not Hashi’s).
TSH 0.01
Free T3 6.1
Free T4 18.8
these numbers look great but I’m not feeling great. I’m also gaining a bit of weight. I’ve ordered another diurnal salivary cortisol test to see where that’s at as I think my T3 is pooling in my blood, so I’m hoping to dial that in and address that. But I just don’t understand how I’m not only not losing but slowly gaining again. I have about 18-20lbs to lose. I feel particularly miserable about my weight. (Gain started in Nov 2021).
Any input from anyone who’s experienced and overcome these challenges, would be so appreciated. I need hope and direction if you have either to offer.
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The lab opens at 7 am and all blood draws were 7:15-8:30am. The last 2 lab tests are the only ones I was even taking NDT on, previously I wasn’t on NDT. I know not to take biotin on NDT before the tests. No biotin at all and no NDT for 24 hours. I fast for 12 hours as I go first thing before NDT or eating.
No the optimal number were target ranges of what can be optimal for others as I was clearly completely outside these ranges when I was initially trying to impact my thyroid function *without any prescriptions including NDT* from April-Dec 2023. I started at 30mg of NDT around Dec 21st, 2023 and went up to 60mg for a couple weeks prior to the Jan 17 test. On the last test I had gone up incrementally to 150mg prior to that test and went back down to 120mg on March 21st. So I was on 150mg when the last blood test was taken, but have been on 120mg for the last week… I believe I had pooling on 150mg.
I am a practicing midwife and read labs and understand the ranges given by the labs (though the lab ranges are complete garbage and the averages of sick people as TSH is considered normal around here at 6), vs what I have put for my own reference as optimal when I was trying to manage this without NDT.
No thyroid hormone replacement works well until your core strength vitamins and minerals are up and maintained at optimal -
On UK ranges - I know now I need my ferritin at around 100 - folate around 20 - active B12 around 125 ( serum B12 around 500++ ) and vitamin D around 125 for my NDT - Thyroid S to work well for me.
With NDT you dose to the relief of symptoms as there is no blood test specifically for NDT and no ' optimal ranges ' :
The blood test ranges and guidelines are more about giving doctors guidelines on how to interpret blood tests for people taking thyroid hormone replacement - and nothing much to do with where in these ranges does the patient feel better - as we all have our unique set point for where our T3 needs to be to kick start the body's process of metabolisation.
Your results above show a struggling thyroid - with a TSH over 3 - and too low a level of T4 to be able to convert into enough T3 to give your body enough energy to function well and metabolise -
and if not metabolising your body doesn't have the energy to breakdown and extract the key nutrients from your food - irrespective of what you eat - and why so many of us need to maintain core strength with supplements - when even symptoms improve.
Have you tried going to the doctor as your results clearly show a thyroid health issue and the first line treatment option of T4 - Synthroid - maybe all that is needed to build up your T4 stores to allow more conversion into T3 -
it will be a slow build and as your vitamins and minerals rise you should see the benefits of this much cheaper, more easily obtained and managed treatment option.
If T4 monotherapy does not work for you this is when to consider either adding in a little T3 making a T3/T4 combo of synthetic thyroid hormone drugs or switching to NDT.
I am much improved taking NDT but it took me over a year building up my core strength vitamins and minerals - which I still need to maintain - before I switched over from T4 monotherapy and I'm afraid there is no quick fix.
When optimally medicated on NDT the TSH will be low suppressed as with any thyroid hormone replacement containing T3 - the TSH is lowered - and you may well see a lower in range T4 with a much higher T3 reading compared to when on T4 medication which obviously is dependant on timing of blood tests which obviously is also down to last dose / blood draw etc.
I’ve assumed that for example, my ferritin stores would increase in concert with NDT as low storage iron is essentially caused by the low thyroid function. I do eat a lot of iron in my diet and hadn’t supplemented since my last pregnancy in 2018. I have ordered the only supplement I fully trust (Three Arrows: Simply Heme) about a month ago and I guess it fell off the delivery truck so they are resending a new package and I have planned to start that for awhile now. Because I pay for bloodwork privately, the last time I tested vitamins was December. I suspect my D has gone down (because Canadian winter) but folate and B12 were good. I will start a D3/K2 this week, and the heme when it arrives.
I was wrongly diagnosed in the past with “idiopathic Hypersomnia” in about 2010 when I was 23, and depression when I was 12. I was never properly treated or diagnosed for my thyroid. Though I’ve had crippling fatigue since childhood, heavy periods and had to stop working during both my pregnancies due to fatigue, and have had a total of 5 miscarriages between 2014-2022.
I know the ACE is working because I can now sleep through the night and not wake multiple times to go to the bathroom, and I no longer hemorrhage every month, and have a bit more energy and better mood thanks to the NDT. (Which should help my ferritin some).
I see three doctors. One is an MD I just started seeing in Dec (he’s been my husbands MD for like a decade), and he’s seen my other full lab results as well. He will ONLY order TSH. In Canada, we cannot order our own panels in the way people in the US and UK do, so I also see a Naturopathic Doctor and pay her to order my labs and the markers I want to see. She is otherwise not helpful and I tried to be a good patient from April-Aug last year and take her advice but as you can see from those labs, it got me nowhere. I also see a brilliant naturopathic doctor who specializes in thyroid function in Italy named Dr Bright and she’s been the most helpful, though I only consult with her once per month and she can’t order any tests. I am also a health practitioner and am able to order my own salivary tests, so I can self order the salivary tests. I pay for the consults, tests, NDT and supplements out of pocket so it’s really expensive.
Yes. I get it as I am also self medicating though I had RAI thyroid ablation for Graves Disease back in 2005 and became much more unwell around 8 years later.
I very slowly started to loose my saliva and suffering constant pain and couldn't eat normally - I wasted around a year waiting to be diagnosed for possibly Sjogrens - which was a negative - and another year waiting to investigate my low ferritin - and with no answers nor constructive help from the medical professionals and refused both T3 and NDT by mainstream medical in 2018 I decided I needed to look after myself.
I paid for my T3 and T4 readings and even on seeing the obvious disparity I was still told I was over medicated because of my low/suppressed TSH - and that my T4 was to be reduced - so I decided to turn around and look after myself and am much improved.
My saliva has returned but my taste buds are damaged and what taste I do have very limited and distorted - and I believe all this due to long term consequences of drinking this toxic substance back in 2005 to burn out my thyroid function and slowly research is surfacing which seems to back up my theory -
But first and foremost you must get the vitamins and mineral stepping stones in place -
In the UK a ferritin under 30 is confirmed as a case of iron deficiency and needs further investigation to first rule out other issues before supplementing.
Depression is a very common symptom when hypothyroid and not optimally medicated -
I'm sorry you were wrongly diagnosed and have had to struggle on ' under par ' for so long - I too now realise that I too been hypothyroid since a child - but growing up hypothyroid you don't know any different and just learn to deal with stuff your own way and get by as best you can.
Wow, thank you for sharing your experience with me. Have you read ‘The Iodine Crisis’ by Lynne Farrow? Definitely recommend. From that alone I can see how your treatment would cause issues with your eyes and salivary glands etc. So sorry you went through that nonsense, but I sure do appreciate you taking your own wisdom to help others (like me).
RAI thyroid ablation for Graves Disease - an Auto Immune disease for which there is no cure - is still the first line treatment in the western medical world -
and much like treating, monitoring and dosing on just a TSH reading - simply defies my understanding of what we perceive to be a health care system.
First of all, optimal is not a number, so you can forget those supposedly 'optimal' numbers you've put at the top. Optimal is how you feel. So, if you don't feel good, no matter how good your numbers seem to be, then you are not on an optimal dose of thyroid hormone replacement.
When were all those tests done? You've given the day and the month but not the year. And what were you taking at the time the tests were done? Because if you were on 2 grains of NDT for each one, then no matter what you think about your antibodies, you have Hashi's. It's just not possible for results to jump about like that if you don't - unless, of course, you sometimes take your NDT on the morning of the test, and they were all done at different times. But, if you were on the same dose for each one, and the same protocol was followed each time, then you have Hashi's.
Have you had both Hashi's antibodies tested: TPOab and TgAB? Antibodies fluctuate all the time, so you cannot rule it out on the basis of one negative blood test. Have you had an ultrasound of your thyroid, to assess any damage? About 20% of Hashi's people never have over-range antibodies and are diagnosed by ultrasound once the damage is visible.
I take a daily basal body temp with a glass thermometer (Dr Broda Barnes method) to track both thyroid function and adrenal function.
On two grains of NDT, it's doubtful that your thyroid has any function. Thyroid hormone replacement does not just 'top up' what your thyroid is making. It does what it says on the box: it replaces it.
And the problem with that method of tracking is that often, when hypo, body temperature never does rise to 'normal'. The thermostat is definitively broken and it stays low no matter how much thyroid hormone you take. So, not reliable, I'm afraid.
I know adequate cortisol levels are needed to get the T3 into the cells. So I think this is my problem.
Have you had your cortisol tested in any way?
I think my T3 is pooling in my blood
There's no such thing as 'pooling'. T3 doesn't stay around long enough to 'pool'. It only has a half-life of around 24 hours. If it doesn't get into the cells in that time it is either converted to T3 or excreted.
But I just don’t understand how I’m not only not losing but slowly gaining again. I have about 18-20lbs to lose.
If you are correct, and you do have some degree of resistance to thyroid hormone, it's perfectly understandable. T3 in the blood doesn't do anything. It has to get into the cells to be active. So, you are still hypo at a cellular level despite good levels of T3 in the blood.
Do you consume much soy? It's difficult to avoid these days, because they shove it into everything to bulk it out. Soy is cheap.
So, assuming you do have resistance to thyroid hormone, and your T3 is not getting into the cells, have you considered trying T3 mono-therapy with a high dose of T3 taken all in one go? Flooding the receptors with T3 can force it into the cells. That's what I did. And at one point got up to a dose of 225 mcg T3. That was over ten years ago, and during that time I have been able to slowly reduce the dose, as the receptors finally got the message and allowed the T3 in. At the moment, I'm on just 50 mcg daily. But, I don't know if that's my final dose - I might have to reduce again, or I might even have to increase back up to 75 mcg, which I took for a long time. We shall see. But, I'm definitely better than I was on NDT or T4+T3. Over the years, I have periodically tried to reintroduce T4 into my dose, but it never works, and I'm always relieved when I come off it again.
I don’t have Hashimoto’s. The top 4 lines were all with supplement and diet alone, not NDT or any other hormone. The January test was 60mg of NDT (ERFA). The last one was crept up to 150 (Thyroid-S once I sourced it) over the time previous to the March test. I take 120mg now, as I feel a bit better in it, minus the weight gain. As mentioned above, I have all labs taken between 7:15-8:30am. I get in the line when they open at 7, and depending on how many are in front of me, determines when blood is drawn. There’s always a lovely line up outside even in -20°C weather here. All blood draws prior to 9am.
I consume ZERO soy. I eat meat primarily. We raise our own hens and they too are soy free. I buy grass fed and finished beef from people I know locally. I don’t use sauces (except for coconut aminos when I make my own beef jerky at home) I don’t consume dairy or gluten except butter which has almost zero lactose and causes me no problems. I drink Swiss water decaf with butter occasionally. No caffeine. Previous to stopping gluten, I would only source non sprayed and non fortified wheat flour from a farm locally. I eat ZERO packaged foods, zero processed foods. No sugar and low carb (I gain weight easily). If I didn’t have a diet with this much effort I would be 60lbs overweight easily. I care very much about what I put in my body. No seed oils at all, etc. I take feeding my family and caring for pregnant women as a midwife very seriously and have done my best with that for years, and always seek to improve that as I learn more. I eat enough/do not skip meals or under eat. My mother eats a standard American diet (not even overeating significantly) and is on synthroid and has crept up to 300lbs. This is a great factor in my resistance to synthroid. She’s not treated but her labs are “fine”.
My MD is very willing to offer synthroid (Levo), but I want to be sure I can’t get the NDT tweaked before I go that route. He will only test and prescribe off TSH. He is a new doctor to me, as I started with him in December solely in case I wanted a script. I obtain my NDT (Thyroid-S) privately but did convince him to prescribe 90mg of ERFA which is why I have a stash of that too.
I believe my issue is adrenal and that’s why the T3 isn’t getting into the cells as effectively as it should yet. I take adrenal cortex extract on defending doses 4xs a day and I feel that working, and can see my temps improving albeit still way more irregular than I’d like. I’m waiting for the test kit to ship and will repeat that test to compare to my last one (last June and prior to ACE treatment), and will adjust that and see what happens before asking the TSH-only doc for Levo.
Your post piqued my interest because it somewhat mirrors my situation. I cannot lose weight since becoming hypo
I take what I eat very seriously and use thyroid and adrenal glandulars to stay well. I’m now sleeping so much better and recently my stubbornly low temp and pulse have risen to around 36.6, pulse 66-ish. Previously temp was low-mid 35s and pulse mid- high 50s
I was once told by a doctor that a temp of around 37.2 would be optimal for most and indeed, using a glass mercury-filled thermometer, mine remained between 37 and 37.3 until all of this started. Btw, where do you find a glass thermometer these days?!!
Since frees have been good, my temp, weight and pulse have at least stabilised and I’m clinging onto the hope that if I can raise basal temp a little bit more, then I’ll shed some. I’m currently in the process of raising my dose but it’s painfully slow because every time I do so I first have to increase the adrenal glandular otherwise I become sleepless, jittery and anxious
Anyway, the point of this ramble is: perhaps something similar is going on for you
NB this forum advocates taking last dose of NDT or glandulars 12hrs before testing. I notice yours was 24hrs which may have caused your FT3 to be a little higher
What is your adrenal glandular dose? I’m taking 1000mg 8am, 700mg noon, 300mg 3pm, 100mg 6pm. (This has gone up a few times from where I started).
I’m not certain but suspect that the 12 hour recommendation on dosage before testing would be for someone who takes a mid afternoon dose as well as a morning one? I take morning only, and wouldn’t think it makes sense to take it later in the day the day before bloodwork? I always have labs drawn prior to 9am. My MD (who I’m not actually following with at all) said you should not skip any doses before bloodwork, and Dr Bright I’m working with says to take it at normal time the day before and then take that day’s dose AFTER bloodwork.
A couple other things to note: I take my basal axillary temp (so under the left armpit for 10mins upon rising) as per Dr Broda Barnes and Dr Elizabeth Bright, so axillary temp is usually about .5° lower than oral temp. My temps are definitely stabilizing more in the last month than they were previously, but still lower than 36.4 and can drop quite a bit too. (Should note that I am a menstruating female so I expect my temp to be lower in my follicular phase and higher in luteal phase.) Dr Barnes suggests that this temp should be optimal on Day 2 of a woman’s cycle, and mine is still low.
I am in Canada and bought a non-mercury glass thermometer in the pharmacy section of my grocery store. I actually have two because I wanted to be sure that I didn’t have a thermometer problem (I don’t, they are both accurate). You can also buy them on Amazon. I’ve read that some people can still find old mercury thermometers in antique shops or on eBay as well.
I am going to pick up a D3/K2 supplement today. I’ve been on the fence about it. Being in Canada I’m getting no vitamin D through sun/synthesis over the winter though my levels were low-norm previously, I suspect they are low now, and I know my calcium potassium ratio is far too high (super obvious to spot someone who is hypo on an HTMA). Because k2 regulates calcium, it’s worth a shot.
I ordered simply heme iron from Three Arrows over a month ago and there was a problem with shipping the order (I think they literally just forgot to send it). They’ve sent me a new one now (and luckily refunded my shipping expense), so I’m going to follow a 1.5 x my weight in kilos for dosage, and think this may help.
I just received another cortisol test kit to do the diurnal salivary test (4xs in the day), and will evaluate that to see if and how much improvement I have gotten on my cortisol levels and if I should adjust my dosage. I don’t really want to take more, as it is costing me about $85 a week in adrenal cortisol extract supps. I found a capsule that’s cheaper and will save me a ton but it’s on American Amazon and I have to ship to the states and get my friend to bring it back to Canada for me.
I appreciate your reply so much. It’s nice to know I’m not alone!
I notice yours was 24hrs which may have caused your FT3 to be a little higher
That of course should’ve said, a little lower
The product I take is a bovine adrenal cortex in a mixture of rice bran. I used to take it breakfast and lunchtime but that kept me awake at night so now I take take 150mg each morning. This is working ok-ish at the moment but I want to try again with a smaller lunchtime dose
$85 is a huge weekly cost!
I take my basal axillary temp (so under the left armpit for 10mins upon rising)
I do the same but before rising. Thank you for the thermometer info
Can’t comment on k2 regulating calcium but I know it helps prevent it from sitting around in the arteries and directs it to bones. I don’t understand the mechanism
Three Arrows is reported to work very well. My husband recently started it but more slowly with one and is now on three. We’ll test again soon. Good luck with it
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Weight gain and trying to lose it!
TROUBLE LOSING WEIGHT. PLEASE HELP.
Pcos and losing weight with hypo
