Hi, I’m 27 year old male, who is struggling with classic hypothyroid symptoms. I think I started to experience it when I was 18.
Here’s blood results, I’m not on hormones
Last year (blood taken late morning)
TSH 4,21 (0,27 – 4,2)
Ft4 13,8 (9-19)
Ft3 3,4 (2,6 – 5,7)
B12 538 (138 – 652)
Ferritin 76 (22 – 275)
SHBG 14 (20-72)
Vit D 112,5 (>75)
Recent (early morning)
TSH 6,01
Ft4 13,7
Ft3 4,2
Folate 2,8 (7-46,4)
SHBG 22
Vitamin D and Ferritin were low after getting diagnosis, supplemented to OK status
I feel similar hypothyroid with both those results, brain-fogged with slow metabolism, high cholesterol, mild fatigue. I don’t have Hashi, but my antibodies were higher than 0.
2 years ago I tried Levo 50 mcg. I felt immediate improvement with everything, but it lasted only week or so and after that I felt myself bad again. I started increasing and decreasing the dose depending on my feelings. I had periods of time feeling myself great and energetic and after that suddenly very bad week or so. After 3 months with TSH 0,01 Levo stopped working.
I have low cortisol in saliva, but high in the range in blood, and every time I feel less hypothyroid, I feel refreshed in mornings. I have low testosterone (10-13) as for my age, but it went optimal and much higher (20 and more) when T4 worked.
I thought the problem is somewhere else and started to work on vitamins and overall health. I also lost 20 kg on LCHF diet and became slim, with optimal insulin, but it didn’t make me feel normal at all and I put all the weight back after 3-4 months as soon as I went off diet. While working on vitamins, I tried again Levo and stick to 50 mcg, again I had those phases of feeling good and bad, and after 2 months it ended hypothyroid.
This time I read about TSH feedback loop, about TSH-regulated conversion and how important is to find right combination between T3 and T4.
Do you think I have hypothyroidism or it’s just my set-point between Ft4 and TSH higher than in most people? May be there is another reason for elevated TSH and hypothyroid-like symptoms and deficiencies?
Is it really normal or strange to feel immediately so much better on Levo and then bad, and to have such fluctuations?
Thank you very much for reading and answering.
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ondrej41
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The picture with thyroid blood results is relative stable for last 5 years. Without taking hormones I always have TSH between 4 and 7, Ft4 is in the middle or little lower. Does it looks like hypothyroidism, even with midrange blood T4 and T3? Because I feel that my cells want more thyroid hormone and Levo, when it works, makes the life good.
My doctor didn’t want to prescribe me hormones, because my Ft4 and Ft3 are in range, I was very lucky that he changed his mind. I’ve decided to start Levo again 4 days ago. I’m little worried, because usually I feel its influence very quick, but now I feel nothing changed. How many days it can take to feel the effect on average?
Sometimes I read threads on this forum and feel, wow, sounds like me!
You should ask your doctor for a thyroid ultrasound to get done. A minority of patients with Hashimotos are diagnosed by ultrasound as they have normal antibodies.
Your folate is low, are you doing anything about that? Also your SHBG is below range, you mentioned you had low testosterone, can you post the result with ranges. Did you get both total and free testosterone done? Should get your LH and FSH checked as well to rule out hypogonadism.
You could very well be part of the, estimates very but 5-10% of the population who have a higher natural set point. Sleep apnea can also have similar symptoms, good to get that checked.
Thyroid ultrasound is fine. For me it just looks like low functioning thyroid. My thoughts are that fT4 and fT3 are a blood marker and TSH shows what happens in cells. Because pituitary is very sensitive for thyroid hormones, high TSH indicates automatically that there is a tissue hypothyroidism and I need more thyroid hormone. If TSH was 1 or 2, there wouldn't be enough T3 in blood, so thyroid can't make it enough by her own and TSH shouts to product and convert more. But I don't know if I understand it correctly and if I'm right.
Levels of pituitary hormones:
ACTH 56 (7,2 - 63,3). My blood cortisol levels at that time were 642 (263 - 724)
LH 3,9 (1,7 - 8,6)
FSH 4,1 (1,5 - 12,4)
Prolactin 161 (112 - 420)
Growth Hormone 104 (<30 - 2470). My IGF-1 at that time was 170 (89 - 276)
Testosterone 10 (8,6 - 29)
Free testosterone 7,2 (2,6 - 9,8)
SHBG 22 (20 - 72), but for males it should be (20-30)
When I felt fine on Levo, my testosterone was 20-22 and SHGB was 27. So I see it more like adaption of body because of staying in low-energy state. When there is not enough thyroid hormone in body cells, there will be low unbounded cortisol, high insulin, low testosterone. But I'm not 100% sure I'm right.
I am planning to supplement Folate. I've worked on ferritin, vit D, other things like leptin, insulin, liver and gut health. It didn't change the picture with thyroid results and my feelings at all. I believed that there will be something like NTIS because of, for example, gut problems like SIBO or dysbiosis, but there are low TSH and T3 in it, so it's not NTIS.
I know that Levo made me feel fine and symptom-free. I don't know why the effect was unstable, lasted for week or so and after 2-3 months same dose of Levo stopped working. But may be the answer is the right combination between T4 and T3
My thoughts are that fT4 and fT3 are a blood marker and TSH shows what happens in cells.
No, that's not right. The pituitary only knows what in the blood, it has no idea how much is getting into the cells. If it is satisfied that there's enough thyroid hormone in the blood, it lowers the TSH. Your pituitary apparently things you need more hormone in the blood, because your TSH is high. People with Thyroid Hormone Resistance, where hormone is not getting into the cells, can have very good blood levels of hormone, and low TSH. There's not connection between the pituitary and the hormone in the cells.
Your Frees are very good for someone not on thyroid hormone replacement - even though the pituitary apparently isn't satisfied - and you don't appear to have a conversion problem. Personally, I would plump for a pituitary problem, because some of your other pituitary hormones are on the low side. except for the symptoms. The symptoms say that the thyroid hormone is not getting into the cells.
Your ferritin is still very low, even if you have been working on it. And your folate is a catastrophe. Make sure you supplement with Methylfolate, not folic acid.
I know that Levo made me feel fine and symptom-free. I don't know why the effect was unstable, lasted for week or so and after 2-3 months same dose of Levo stopped working.
Levo can't stop working. It's not aspirin, it's a hormone. It's still working in your body but there's just not enough of it to continue to make a difference. So, did you try increasing the dose? How high a dose did you work up to?
Yes, I read about it. As far as I know, T4 is not the answer for people with Thyroid Hormone Resistance, they usually don't feel good after trying it. But I was competely fine on Levo for periods of time like 1 - 3 weeks, every day the same, energetic, and then suddenly I've got all my symptoms back. I think it could be a bad balance between T4 and T3, which is created after taking hormones manually, and I would need some little T3.
I read on frontiers that person's reference range is narrow. I made a conclusion that some people just need to have their blood hormone levels on higher side to make all cells happy.
"So, did you try increasing the dose? How high a dose did you work up to?"
Well, that was a mess. First time when I tried Levo I didn't have any knowledge about it, so I could take 50 mcg for week when I felt fine, and then, after returning of symptoms, took 100 or 150 mcg or 200. Taking them I lived a bad week and then I felt good again. I didn't know anything about dosing and how the hormones work. In the end my TSH was suppressed and I felt overdosed.
Then I've made a break. The second time I sticked to 50 mcg a had those unstable periods of time again for 2 months. I ate healthy and took supplements, every good week was better and better, but then suddenly it ended again with returning symptoms of hypothyroidism, like the air went off balloon.
"The symptoms say that the thyroid hormone is not getting into the cells"
Yes, the symptoms are classic. Levo makes me feel warm (my temps are usually low), body swelling goes away, I am no longer having any bloating after eating and food processes really quickly. It's like I live in hibernation mode, but thyroid hormones wake all the systems up and I'm active and happy to live.
"Personally, I would plump for a pituitary problem"
Well, that is interesting direction. As I know, I can have active pituitary tumor which produces extremal quantities of hormones like TSH and ACTH or I can have hypopituitarism, when pituitary hormone levels are low. I don't know if I can have a combination of it, which could explain high TSH and lower growth hormone, LH and FSH. I think if I had pituitary tumor, then my TSH wouldn't go down with Levo, but it goes and I had suppressed TSH after my first self-medication.
I read study on rats, where they were made hypothyroid with carnidazole and their LH and FSH went down. I don't know about growth hormone, i've spoken with more or less good endocrinologist and she said, as long as Igf-1 is fine, I should not worry.
I can imagine secondary hypogonadism, but as I know, it's often associated with primary hypothyroidism. What I know exactly is that testosterone and libido went high when I was symptom-free on Levo. Looks like nearly every problem in the body can be connected with hypo.
As far as I know, T4 is not the answer for people with Thyroid Hormone Resistance
Well, it does rather depend on how well you convert the T4 to T3.
I made a conclusion that some people just need to have their blood hormone levels on higher side to make all cells happy.
That is true. But, as we're never tested when we're well, it's impossible to know what our own fixed level is.
In the end my TSH was suppressed and I felt overdosed.
A suppressed TSH on its own doesn't automatically mean you are over-dosed. You need to see the FT3 result to know. There's nothing wrong with a suppressed TSH.
True what you say about the pituitary. But, how else to explain that high TSH with good levels of Frees?
So, your dosing, in the past, with levo was erratic in the extreme. Yes, you have to know what you're doing. So, why not try levo again, and do it properly. Start on 50 mcg and retest after six weeks. Then increase by 25 mcg and wait another six weeks before retesting. And, continue like that until you feel stable, with all your symptoms have gone.
Jumping about from one dose to another, is bound to stress your body and make you feel bad. The rule with all hormones is to start low and increase slowly. Slow and steady wins the race! And, that way, you'll know if your thyroid was the problem all along, or if it was just a red herring.
"True what you say about the pituitary. But, how else to explain that high TSH with good levels of Frees?"
I read recently book Tired Thyroid. Its author claims that the mode of Frees in healthy people is above midpoint. I can imagine that with normal TSH my Frees would be in the bottom of the range.
"A suppressed TSH on its own doesn't automatically mean you are over-dosed. You need to see the FT3 result to know. There's nothing wrong with a suppressed TSH."
May be some TSH would be good for conversion. Also if we overdose with T3 or T4, than we can have higher rT3 from it and I think there can be some combination of hypo- and hyper- symptoms. Or not... I had it. But we are all different.
"Start on 50 mcg and retest after six weeks. Then increase by 25 mcg and wait another six weeks before retesting. And, continue like that until you feel stable, with all your symptoms have gone"
After years I finally understand that hormones are not sweets and I need to dose with patience I also want to add small dose T3, like 1-3 mcg. I didn't know why I have always felt better at the start with Levo and then worse. I denied hypothyroidism because of it, thinking there is other cause. But last month I read about TSH-regulated conversion and then Dr. Blanchard's claims in the book that his patients often experience "up and down phenomenon". I saw it familiar with my situation. Dr. Blanchard wanted to balance T4 with little T3. So may be the right and thoughtful dosing is the answer.
"And, that way, you'll know if your thyroid was the problem all along, or if it was just a red herring"
I don't know if all the symptoms and hormone imbalances would have resolved after taking thyroid hormones in such people who don't have thyroid problems.
But it's a good idea to get my pituitary checked. May be the problem has more than one head.
Problems often do have more than one head. So, check all you can.
I don't know if all the symptoms and hormone imbalances would have resolved after taking thyroid hormones in such people who don't have thyroid problems.
If people who don't have thyroid problems take thyroid hormones, they will probably make themselves very ill. It is not recommended. If you don't have a thyroid problem, you won't have low thyroid symptoms.
May be some TSH would be good for conversion.
Maybe it would. But that's not what we're talking about. I'm saying that a suppressed TSH, with in-range FT3, does not mean you are over-medicated.
Over-dosing with T3 does not cause high rT3. T3 cannot become rT3, that is a physical impossibility. T4 converts to T3 and rT3, then both convert to T2. Taking too much T4, will of course cause high rT3 once it hits a certain level. But that won't cause both hypo and hyper symptoms. Having too low T3 causes hypo symptoms. But, the problem with symptoms is that so many of them cross over and can be both hypo and hyper symptoms. It is also possible for some cells to get too much T3, causing hyper symptoms, whilst others don't get enough, causing hypo symptoms.
I read recently book Tired Thyroid. Its author claims that the mode of Frees in healthy people is above midpoint.
That is not born out by research. humanbean has a chart showing levels of thyroid hormone in euthyroid people.
I can imagine that with normal TSH my Frees would be in the bottom of the range.
Why so? Your TSH in no way corresponds normally with the levels of your Frees.
"Why so? Your TSH in no way corresponds normally with the levels of your Frees"
May be I'm not undestanding it correctly, but, if there is no tumor, pituitary raises TSH to give me these levels of Frees. Thyroid and thyroxine need additional stimulation and also conversion to give the amounts which my body thinks as sufficient.
I can't see another connection between high TSH and cellular hypothyroidism. Or it can be resistance even to T4? And if it so, looks like the way to treat is same with the thyroid hormone.
Or I also saw some nutritional balancing program from alternative medicine which says there can be a problem with cells permeability which affects thyroid hormone absorbtion and it can be treated with diet, vitamins and all this stuff.
"I'm saying that a suppressed TSH, with in-range FT3, does not mean you are over-medicated"
I have little mess with it, because in the book Tired Thyroid the author claims that fT3 shows only the levels from systemic conversion by D1. If it is true, then we don't know what is going with conversion by D2 in cells. Or may be she wrote some bad stuff.
"It is also possible for some cells to get too much T3, causing hyper symptoms, whilst others don't get enough, causing hypo symptoms"
I see there is a problem with supplementing - to give no more no less T3 than cell's needs. So I may make a conclusion that fT3 from Cytomel is not equal to fT3 from combination of Levo and Cytomel even if their results are similar number?
May be I'm not undestanding it correctly, but, if there is no tumor, pituitary raises TSH to give me these levels of Frees.
That TSH is much too high for the level of your Frees. Normally, with Frees that high, the TSH would be 1 or under. That is the TSH of someone with very low Frees.
The TSH is stimulating the thyroid unnecessarily. The majority of euthyroid people with Free levels like that would not need any more hormone.
Thyroid and thyroxine need additional stimulation and also conversion to give the amounts which my body thinks as sufficient.
Your body doesn't think anything. It is the pituitary that increases TSH when blood levels of thyroid hormone are low, and decreases it when blood levels are high. I don't know what you mean by thyroxine needing stimulation. Thyroxine is a hormone, not a gland. And your thyroid should not need any more stimulation because it is already producing a lot of hormone by euthyroid standards.
I can't see another connection between high TSH and cellular hypothyroidism.
You don't know if you have cellular hypothyroidism. And your pituitary certainly wouldn't. It only goes on the levels in the blood.
But, the treatment with any form of hormone resistance is treating with high doses of hormone. But, hormone resistance would not cause that high TSH.
Or I also saw some nutritional balancing program from alternative medicine which says there can be a problem with cells permeability which affects thyroid hormone absorbtion and it can be treated with diet, vitamins and all this stuff.
Nutrients certainly need to be optimal for your body to be able to use thyroid hormone correctly, and that includes absorption at a cellular level. Also, consuming soy can affect how well your cells absorb thyroid hormone. Do you consume soy? Are your nutrients optimal?
I have little mess with it, because in the book Tired Thyroid the author claims that fT3 shows only the levels from systemic conversion by D1. If it is true, then we don't know what is going with conversion by D2 in cells
Certainly we have no idea what is going on in the cells. But, I don't see what that has to do with any of this.
So I may make a conclusion that fT3 from Cytomel is not equal to fT3 from combination of Levo and Cytomel even if their results are similar number?
That is a false conclusion. There is no difference. Why would there be? The fact that some cells are absorbing more than they need, and others not getting enough, has nothing to do with where the T3 comes from. Your body has no idea where it comes from.
No, I don't know if I ever ate soy (may be it's in processed food which I sometimes eat). My nutrients are not optimal, but my stomach and digestion are slow without thyroid hormone which usually boosts it to, I believe, normal level. It's hard to absorb nutrients from food.
Two weeks ago I tried guggul, which improves conversion. It gave me some good energy for a few days.
"The TSH is stimulating the thyroid unnecessarily. The majority of euthyroid people with Free levels like that would not need any more hormone"
Well, I found some older tests which were made while I was taking random doses of T4
First
TSH 1,55 (0,27 - 4,2)
fT4 18,84 (12 - 22)
fT3 5,46 (3,1 - 6,8)
Second
TSH 2,6 (0,27 - 4,2)
fT4 17,67 (12 - 22)
fT3 4,46 (3,1 - 6,8)
Looks like I need to move my fT3 to the end of the reference range to satisfy my pituitary. I don't know whom to trust - the majority of people who is happy with my levels of thyroid hormones or pituitary. And I still have hypothyroid-like symptoms.
"You don't know if you have cellular hypothyroidism"
You are right. Because of low LH and FSH and low testosterone I am meeting formal criterias to be diagnosted with secondary hypogonadism. There are some symptoms which are similar to hypothyroidism. But I still get some good reactions to thyroid medications.
And possible hypopituitarism don't explain high TSH.
"The fact that some cells are absorbing more than they need, and others not getting enough, has nothing to do with where the T3 comes from"
I give up trying combine the theories I read Why it can happen?
Does not show a conversion problem. But, your FT4 is about as high as it can go, there, without starting to convert to more rT3 than T3, thus worsening your FT3 level.
I thought guggul was for weight loss, I've never heard it improved conversion.
Your pituitary doesn't differenciate between the T3 and T4 in the blood, just in the pituitary. And your conversion should be good in the pituitary, so that shouldn't make any difference.
Why does it happen that some cells have too much T3 and others not enough? Wish I knew. But, it could have something to do with the receptors being turned off, and not yet turned on again. The body does that to preserve the most important organs, when there is not enough thyroid hormone to go round. And, when on thyroid hormone replacement, as the dose increases, and the body becomes reassured that form now on, there will be a constant, sufficient supply of hormone, it gradually turns the receptors on again. Which is one of the reasons it's such a bad idea to chop and change doses all the time.
Anyway, I still suggest that you go back onto 50 mcg levo, and increase by 25 mcg every six weeks, and see what happens. All the speculating in the world isn't going to do anything practical to help.
For me it is comprehensive explanation, about more or less receptors cells. I hope that moving gradually in finding right dose will help in stabilizing my good results from past, when the whole body worked very quickly and then just stopped. Will do it. Thank you for helping
Stick with the Levo you are taking and when you have been on it 6 weeks then retest and start a new thread with the most recent and and the previous one. We shall find it much easier to comment then and put you on the right tract if readings aren't where we would want them. I think in the past you have may be switched around too much. Nothing works quickly in the Thyroid world so we have to be patient! It can take many months to get the dose correct for you.
Are you taking your medication on an empty stomach with a full glass of water and then nothing to eat or drink for a further hour though you can have water. As thyroid people we tend to be low in vitamins and we often have low stomach acid as well.
If you look on the Thyroid Uk site who run this forum you will find a lot of useful information. It's important wextake other medication away from our thyroid Ines so the site explains this better than I can. But remember patience and that temping as it may be to try if doesn't work trying to speed it up it often means starting again!
Ask questions if anything you don't understand, nothing is ever trivial, remember we have all been there so understand
If you go through my recent thread you’ll see that I’ve been going though something very similar to you, though my Frees were lower. My antibodies and ultrasound also were fine, clearly the TSH increased in response to decreased thyroid hormones but have been unable to find the cause as Hashimotos is most likely ruled out.
Definitely follow the advise on this forum and be patient! Thought I’d ask since some studies suggest that TSH may be raised from obesity while opposite can also be true. Did you get your TSH and Frees checked when you lost the weight?
In the opening post you can see last years' results when I lost weight. Also 4 years ago I wasn't overweight and my liver tests were normal, I had following thyroid results
Your results from 4 years ago show that your FT4 was 37% in the range. The results from last year show that while your FT4 was middle of the range, your FT3 was in the bottom quarter! Definitely your raised TSH looks like it is in response to the sub-normal hormone levels which, given symptoms, would be relevant.
Good question and thanks for asking. My symptoms initially beyond weight gain were chest pains, muscle weakness and pain, sluggishness (sleeping a lot), and a digestive system that was wrecked. Constant pelvic pain after eating. I could not digest food which just went through me, lots of embarrassing flatulence, despite a gluten and dairy free shake diet and then a paleo diet.
On 125mcg NDT (went up quickly like yourself, 25mcg increase every week).
Labs were: TSH 0.02 (0.30 - 5.50) FT4 54% (up from 36%) / FT3 58% (up from 24%)
I did lose weight and had no more chest pains. However I had sped up bowels, but I think it was just because I was sensitive to the large dose which I never let my body slowly get used to.
2 years later my TSH was suppressed but T4/T3 were in third of range.
Got manipulated by a doctor to go off the 125mcg NDT.
From 2014-2016 I had gone from 220 pounds to 185 pounds on 125mcg NDT, now being off it over 8 months I went from 185 pounds to my current 230 pounds! My digestive system was always messed up but now I not only had the massive weight gain but was back to needing 12-14 hours of sleep, very sluggish, chest pains, gallbladder type attacks in the middle of the night, soreness in ankles with my infamous limping.
Now here's the anecdotal evidence of how the hormones helped me. I was put on a trial of Synthroid, I've now reached 112mcg but a long way to go. I feel decent after 7-8 hours of sleep, it is impossible to sleep 12-14 hours like before. No more chest pains or pelvic pain. Finally have formed stools and less flatulence, and less feeling full easily (the meter for my digestion seems to be gastroparesis with too low hormones, finally formed but constipated which is where I'm at now). I still need to improve my digestive system, lose weight (stuck at 230 pounds), have carpal tunnel syndrome, hypotonia and muscle weakness and fatty liver. Feeling cold, and dry flaky skin. So I do feel that the thyroid hormones have helped.
Thought I'd add, since we don't have antibodies it is probably related to the pituitary/hypothalymus. Some interesting findings:
"On serum samples, the diagnosis of CH is usually suggested by the finding of low FT4 concentrations associated with low/normal TSH levels (60, 61). Nevertheless, some CH patients with a predominant hypothalamic defect have high serum immunoreactive TSH levels but are devoid of full biological activity. In these cases, TSH elevations are similar to those generally found in subclinical or mild primary hypothyroidism and may lead to the misdiagnosis."
usually low to normal, or even slightly elevated, in patients with tertiary (hypothalamic) hypothyroidism. Tertiary hypothyroidism can be misdiagnosed as a condition of primary hypothyroidism. Therefore, measurement of circulating anti-thyroid autoantibodies and thyroid ultrasonography should be carried out in every patient with central hypothyroidism."
Thank you for the studies. Well, I can imagine some mutations with TRH and reduced bioactivity TSH. For me the biggest line of these studies is that treatment of the hypothyroidism is still the same with thyroid hormones, so optimizing them is the priority regardless of whatever reason they are not OK.
Because I have hypothyroid-like symptoms, it looks like I should believe more to my TSH than to good levels of Frees. I think I saw someone's results here before his hypothyroidism started, and Frees were at the top of the range with TSH=1.
I'll put some thoughts if you allow.
As for my view it's bad that you still feeling cold. It's one of the first signs of slow metabolism. As for me I always start to feel warm on Levo before other symptoms dissolve. May be optimizing the dose with T3 will help. I read a study that T4\T3 therapy restored metabolic indicators of hypothyroid rats to the level of healthy rats, but only when it was like time-released T3. Injections of T3 showed much worse result and monotherapy of T4 was the worst. And I also read an option of therapy with low doses of T3 and with much lower ratio than in NDT.
I believe that fatty liver, insulin resistance and not optimal nutrients play some role and I definitely felt better on thyroid hormones after working on it, but it did nothing with my temps and symptoms once Levo stopped doing its job. It didn't help me with hypothyroid-like symptoms and metabolism.
Even in my best state I can feel some digestive problems. If I eat a lot of bad stuff, fastfood, than SIBO gets activated and I can get gastroparesis or less apparent symptoms like swelling and lower energy levels. So for me digestive problems play a big part in general well-being and even mimic some hypothyroid symptoms. I believe they can contribute to low energy state.
One thing I am not sure is that treating this kind of problems without optimizing thyroid hormones will be very effective. If you don't have energy in cells, they won't work properly and it may be too hard for body to regenerate, for example, leaky gut. But if you have little more digestive symptoms than average hypothyroid person, than it could be red flag. Did you try to work with some functional medicine specialist? The gut is like their God
Everyone is different and only by increasing the levothyroxine dose can you begin to see if there’s conversion problems or lingering symptoms despite optimal T4/T3, then combination therapy can help (and many may need to take the T3 twice daily which is greater inconvenience).
My digestive problems are not just slightly more than the average person but noticeably so. Often I feel heat in my back or even feet when I eat or go to the washroom, very weird. The digestive problems greatly increases my anxiety in social situations. I had a very bad experience with a naturopath. I was on a dairy and gluten free strict diet that began with drinking shakes with vitamins every day to slowly transitioning to a paleo diet. Could barely digest an apple or even a piece of meat without disturbance flatulence. I know my body needs thyroid hormones to function well.
Just a couple things to mention. If the cause of the hypothyroidism is mainly hypothalamic it can be many things, from genetic mutations to tumours to brain trauma, and I even read a bit about effect of child abuse on brain trauma which can then reduce the output of the hormones. The cause is secondary to the treatment. TSH is not as accurate of a mirror of thyroid hormones is conventionally thought, it can be a guide but at the end of the day it’s the T4/T3 levels that’s most important.
Good read on link between hypothyroidism and SIBO. For a while I was confused since I didn’t get the classical symptom of constipation but now it makes a lot of sense. Interestingly on a lactose intolerance test my hydrogen was raised and so the lab had a note that gut bacterial overgrowth is suspected.
Sorry for delayed answer. As I understand, hypothalamic hypothyroidism is characterized by low TRH, TSH and Frees. And if the thyroid output is OK and TSH is high, I would wait rather hyper symptoms. It could be leptin resistance that leads to elevated TSH, but in my case losing weight didn't help. I can imagine trauma or tumor causing low TSH or very high TSH and I really don't know, if it can affect work of pituitary or hypothalamus only partially, without dramatic changes in results.
I found a study about co-occurence of thyroid hormone resistance and pituitary tumor.
I read theory that in case of resistance to TH the tumor could be
something like compensation for low thyroid hormone levels in cells.
We know about Low T3 Syndrome, it's when the pituitary doesn't want (I believe it's actually hypothalamus who "thinks") to protect blood T3 levels. And high TSH is more like opposite. For me it's like hypothalamus actually senses low metabolic output (I read it can count body temperature in blood), when metabolism is low for some reason, and wants to increase it. There should be some connection.
May I ask you, what do you think if the true cause of TSH elevation and also symptoms is really somewhere else, outside of hormone glands? I certainly believe that things like child trauma can be the underlying cause of illness, but there are more like heavy metals or biotoxins. I don't sure if the last two are quackery or not.
As I see, naturopathic medicine is as dogmatic as insurance medicine. I'm sorry about your experience and symptoms. May be it is only one bad doctor and other will understand your situation properly. In case of SIBO many people believe that diet and antibiotics is not a treatment and they actually need to address motility issues even by some exercises (and treating underlying cause). There is good blog of a man who survived SIBO. He didn't have constipation too even with methane type
In that study the thyroid hormones are increased, not applicable to our situation.
I think the studies I had posted are most likely if the cause is in the pituitary-hypothalamic, possibly leaning towards the latter. Either vitamin and nutrient deficiencies led to decreased thyroid hormones and hence rise of TSH in absence of Hashimotos, it was a temporary case of thyroiditis, it is Hashimotos despite in range antibodies and normal ultrasound, your TSH is naturally high and low-normal T4/T3 are natural, or it is a predominately hypothalymic dysfunction. It is all very complicated but I have my bets on the last one. I wonder if there are other people on this forum who have had a similar case.
It could be from genetic mutations, lesions, or brain trauma according to the literature. I have read about how abused children can have altered brain chemistry similar to brain trauma so that could be an interesting explanation. I can only speak for myself but that would make sense.
The part with hypothalamus becomes interesting and may be very important for me too. I read that hypothalamic dysfunction can mimic thyroid-like symptoms. If your symptoms are not answering to thyroid therapy, it can be hypothalamus disorder, but there is no testing for this diagnosis.
I have such symptoms like sugar cravings, low temps, not feeling circadian rhytmes or appetite properly and general dysregulation of body systems, like slow digestion, bad hair, water swelling. The thing is that with thyroid hormones all of those symptoms went away almost immediately, I was totally normal, the body worked as it should. But then the symptoms came back, went away, came back... It looked strange. I explained it by unappropriate dosing and that it is a normal pattern for people who are trying to find optimal T4\T3, but may be it's not right and I still need to find the cause.
3 years ago I had TSH 2,8 with fT4 15,1 (12 - 22).
I did diet for leptin resistance (as leptin works closely with hypothalamus, I might actually try to reverse hypothalamus dysfunction) while taking stable dose of Levo, had the same pattern of feeling good and bad for two months and then it stopped helping me. I think after two months of reversing leptin and losing 8 kg I might feel better, not worse. Good times have never happened to me again on a diet, even after 6 months.
Regarding hypothalamic dysfunction, I looked up treatment and well they need to do a brain scan of that region to check for any tumours, otherwise you simply replace the missing hormones. That’s why you probably felt better because you need those thyroid hormones. From what I’ve learned on this forum, slow and steady wins.
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