I've been on various doses and combinations of thyroid medications for the past 6.5 years and haven't felt well in all this time. I've had FT3 and FT4 at the top of the range, middle, and low (and even outside of range low) and had various symptoms ranging from major long term insomnia (currently, I'm sleeping no more than 4.5 hours/night for the past five months and feel like a zombie), anxiety, weight gain (I always weigh the most when my T3 levels are high in the range) nerve issues, pruney fingers, and too many others to list. Since taking medication, I basically have more energy at the expense of the rest of my health (and hair!).
I've been questioning if this might be because I don't need medication. I've finally unearthed my past medication records and discovered a few things.
First off, I was diagnosed with acquired hypothyroidism ONE week before I was hospitalized for the third of four kidney infections I had within 6 months (antibiotic resistant bacteria). I do not have hashimotos antibodies or Graves. I have an intact thyroid gland.
Here are the numbers that produced the hypothyroid diagnosis:
TSH: 2.297 (.340-3.5)
FT4: .7 (.76-1.46)
FT3: 2.4 (2.5-3.9)
The doctor I was seeing/am seeing was treating perimenopausal symptoms with bioidentical hormones and suggested I try Naturethroid for my sluggish thyroid.
This was in May 2013 and I've been on a roller coaster ever since.
Ever since I started meds, my TSH has been mostly .006-.008. It got up to .5 only once and both T3 and T4 were below range at that point and I was very tired, so we increased it and along with the increase came a lot of symptoms/side effects.
I'm worried that the infection caused a temporary dip in my thyroid levels (??) and that I'm taking medication for life unnecessarily. (But it's also possible that my thyroid for real started to give out and we caught it early.)
I'm also terrified of going off the medication, not knowing if my thyroid gland has atrophied over these years of suppression, or if it might be worse than before I started. I don't know if it will 'come back' or at what level or in what amount of time, if at all.
My other alternative is to continue f**king around with these levels/combos month after month, year after year, and pay huge out of pocket $$$ for a doctor who will ignore TSH since I require amounts that severely suppress the TSH to be even a little over where I was to begin with. AND suffer side effects all the while. It's hard for me to remember now how severe my symptoms were and for how long. I remember being cold, dry skin, dry hair and fatigued. I was also not eating well and drinking alcohol. I don't drink at all anymore and eat much better.
Before the test that was the one that clinched the diagnoses, for many years, my TSH had been between .72 up to 1.91 (range: .36-3.74). T3 was not taken, but T4 was mostly .7 (.76-1.46). It seems it has been just outside of range since at least 2006.
I really don't know what to do. Or how. My doctor says it's up to me if I want to try to go off.
I'm in graduate school and starting my Masters thesis in a couple weeks while working full time and still taking classes. I start my clinical practicum in fall 2020 for 1.5 years. I'm worried that I'll crash my thyroid and not be able to complete my studies, which would be a massive student loan disaster.
If anyone has any advice, knows anyone who has had lowish thyroid w/o hashis or graves and has some experience with this, I would be very grateful.
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It isn't a condition that I know anything much about.
Have you spent time on optimising your nutrient levels?
Have you ever done a saliva cortisol test?
There is a lot of overlap between the type of symptoms which are often found in poorly treated thyroid disease, in low nutrients, and in either high or low cortisol levels.
Another thing I often wonder is how many people who are hypothyroid are actually practically starving themselves because they are so terrified of putting on weight and getting fat. Having been reading posts on this forum and other thyroid forums for about 7 or 8 years now I think that poor diet and starvation diets are very common. A starvation diet is not conducive to having plenty of energy, feeling well, sleeping well, and being able to carry out exercise safely.
Edit : Have you got copies of the results of your recent thyroid function tests?
Hi humanbean. Thanks for your response. I think you might be on to something with the euthroid sick syndrome. I guarantee I'm not anywhere near starving (nor was I), and in fact my appetite is huge especially since being on thyroid medication. I was right in the middle of normal weight range for my height when I was diagnosed in 2013 and I have put on 25-30 lbs since starting thyroid medication.
However, the article mentions many other causes including infection, critical illness, kidney issues and irritable bowel (which I have and am treated for with diet/probiotics, etc). One week after the test that diagnosed me, I was in the Emergency room with such a bad kidney infection that I was told they might not be able to save it. Their main goal was to prevent sepsis which was going to be tricky because the bacteria was resistant to all antibiotics except two, and one of them causes anaphylaxis in me. So, yeah, I was critically ill and probably had an infection at the time of the lab test. It was the third kidney/bladder infection I had had within 6 months. But still, my T4 was pretty low even before the infections, for many years.
I have gone through the gamut with nutrient analysis. I won’t go through the whole thing, but I have corrected D, B12, cortisol, ferritin, iron, on and on. I take practically a bowlful of supplements every afternoon (four hours away from either dose of thyroid). I have the MTHFR mutation and take 22.5 mg of methyl folate a day and SAMe. I have problems with low glutathione but it’s tricky to supplement for this gene mutation.
But most of the nutrient issues were corrected after putting me on thyroid medication.
Most recent labs, December 2019 (on 50mcg Levo and 1.25 grains Naturethroid)
TSH: .006 (.45-4.5)
FT3: 3.4 (2.0-4.4)
FT4: 1.28 (.82-1.77)
Previous Labs from October 2019 (50 mcg Levo and 1.5 grains Naturethroid):
TSH: .006
Free T3: 3.9 pg (2-4.4)
Free T4: 1.47 ng (.82-1.77)
rT3: 18.8 ng (9.2-24.1)
Cortisol (morning, fasting): 14.7ug (6.2-19.4 for morning)
PTH: 23 p g (15-65)
I decreased after the last lab again to 37.5 mcg Levo and 1.25 Naturethroid because I still felt like I was jumping out of my skin, not sleeping, wanting to eat all the time, hair falling out. Plus I’ve had other weird effects after going on Levo (I had previously been just on Naturethroid for 5.5 years), like nerve problems, very dry itchy skin, eczema, and pruney fingers.
It’s been one month and I feel less anxiety, but still sleeping a max of 5 hours. It’s taking its toll. Hair falling out a bit less. Appetite still crazy.
There doesn’t seem to be much in the way of treatment for euthroid sick syndrome. But this is interesting:
"Administering exogenous T3 and T4 has variable results but overall seems to confer no improvements to health outcome."
Great!
No idea.
The main thing is I just don't know if I should try to go off and see how I do, risking a potential medical disaster, or continue on taking meds that make me ill for the rest of my life, hoping that some day I'll hit the right combo and amounts...until it doesn't work anymore and I have to fiddle with it all over again. I'm just so tired of it.
The best I felt on medication was when I was taking a low enough dose of naturethroid to be exactly where I was BEFORE taking medication! I did have a bit more energy though. Any lower and I would crash. But that dose stopped being enough. When we increased I got more and more side effects and I've been ill for the past year.
This is a difficult question, and probably no one here can give you a complete answer to it, so I'll try to comment on a few parts.
Your diagnosis blood results do look pretty nasty. Both freeT4 and freeT3 in a healthy person will be around the middle of the reference range. Both of yours were below the range, which is a fairly extreme result. Your TSH was only a little bit elevated, which doesn't match the rest of the thyroid panel, you'd expect to see a pretty high TSH with those low hormone levels.
But as you say, it's important to interpret the results in the context that you were very sick at the time. We know that serious illness can suppress thyroid hormone levels. Alone, these results would be completely conclusive just based on the numbers you've got. But the fact you were so ill throws them up in the air. It's very possible this was a temporary suppression. Personally if these were my results, I would rule these out as any kind of evidence and search the rest of the medical record for evidence of ongoing thyroid illness.
You mention trying loads of different hormone levels and freeT3 levels, which suggests you are knowledgeable about dosing and blood tests. My approach to this is to be very systematic. It's okay to run with a freeT3 result under range, over range, or any weird combination, as long as it is justified by symptoms. In my personal opinion that means if it's backed up by months of data on symptoms and systematic adjustment of doses. In my own case I have a freeT3 double the top of the reference range. The reason I was confident to go there is because I had been increasing my dose slowly for years, staying on each dose for at least 6 weeks, getting about two weeks of twice daily pulse and temperature measures and excellent symptom notes at each dose. As well as piles of other data, sleep records, Fitbit measures based on specific step goals and seeing how much I was moved around the house daily, blah blah blah , I knew every single dose increase was better for me in terms of symptoms than the last.
I suggest that you strictly do something similar. Pulse and temperature are fairly specific for hypothyroid, and measure anything else that captures your symptoms, and get very good records of how well you are at the moment. I find big events like weddings or trips away can be useful measurement points about past symptoms of you want to try and build up older records. Its also useful to have activities you do once a month or a few times per year to act as tests.
It sounds from what you're saying like changes in dose may have been a bit chaotic. I've found that when doctors were in charge of my dosing they would just adjust each time with no reference to where I'd been the last time. But it's good to have a specific direction you're trying to move or thing you're trying to find out, and dose in terms of that.
Also, you may have done this already, but make sure that you've done the most basic things in terms of dosing. Got yourself where freeT3 is high in range and stuck with it for several months to see if you feel well. It's worth exploring this in a bit of depth, see where you feel with freeT3 70% through the range, 90% through or right at the top and then 10% over (or whatever bands make sense for what the smallest dose increase gives you) each one 6 weeks plus unless negative symptoms are unbearable, and get all the good symptom measures and be aware of any patterns as you raise. This is important to do because this is the standard thing that works for most people. If you're an unusual person it doesn't work for, then you need high quality evidence to really confirm that. The vast majority of people who feel unwell on thyroid hormone just haven't ever been on the right dose.
The other big thing that jumps out from your post is that you have an incredibly busy and stressful life and you've made decisions that put you under incredible pressure. I agree with you I would be very reluctant to experiment with going off all thyroid meds under these conditions. I think you may have a difficult set of decisions or acceptances to make around this stuff. Things like, what is more important to you, having a high pressure career and lifestyle or working on your health? But also, in the post you talk about having had a lot of illness and being quite ill today, but then you tell us that you've made life decisions and put yourself into a situation that is really only suitable for completely able bodied people in good health. I think it can be super super difficult to be accepting of having a serious illness, and then managing it and planning a life that supports it. Being hypo is a serious illness. There is pressure all around us to work hard, be ambitious, and to keep going, and on the other hand slowing down, resting, choosing a more humble life all have huge stigma attached to them.
Another related issue is that on thyroid hormone it may be that very few patients get back to 100% health or are in a position to compete in energy levels, concentration, ability to manage stress, etc, with people with healthy thyroids. It's possible that if you're at 80% or 90% health right now, able to live a normal life, willing to commit to a very difficult career choice, that it might be that 80 or 90% is the best that you're ever going to get and it just isn't possible for thyroid hormone replacement to get you better than that.
These are issues I've really grappled with and I could witter on all day about, but hopefully I've given you enough flavour to get thinking about it. My illness was diagnosed shortly after I'd completed graduate school, and when I look back it's clear I was sick the whole time, and I really struggled because of it. It took me like 60% longer to complete my PhD than expected, just because I struggled to concentrate, was spending days in bed or falling asleep after lunch or over my books, and my brain just didn't seem to be able to hold all the information anymore. I'm now at the point where I'm clearly too ill to continue with the work I trained for: it's always stressful, very competitive, short term contracts, etc. If I was able to go back in time knowing what I know now about my illness, I'd choose a field to work in that is much more easygoing and flexible for a person who needs extra help or extra rest. I've met a few young people with chronic illnesses who have been able to make their life decisions knowing they will be ill and choose a life that is more suitable for them. It was amazing to hear about.
Anyway... I am going on and on now. I think if you want to fully explore your thyroid situation, and particularly if you want to try going off all hormone you probably need 6 months to a year where you're flexible enough to spend a few weeks in bed or chilling out if you need to, and overall having an easy life. I always say that when adjusting a hormone dose, treat yourself as if you had flu in terms of resting and gentleness. These things put a big strain on the body. It's easy to get railroaded into a situation where we don't have that option, because normal life assumes we are all able-bodied super workers. It's often necessary to fight upstream to get anything different from that.
SilverAvocado! Thank you so much for this thoughtful response. First, I want to say that I appreciate that you didn't give me a hard time about questioning my diagnosis or my questioning whether or not I should try stopping medication. I'm sure this is brought up a lot on these forums. I'm new here, so I haven't had to answer this question a bunch of times, which I'm sure can be frustrating.
In my case, I think it is necessary to at least consider, just because of the timing of the test being right after two major kidney infections and a week before being hospitalized for a third.
One of the reasons the diagnosis and infection weren't connected is because I was seeing a different doctor for my hormones than for the kidney infections. The hormone/thyroid doctor ran a gamut of tests on my thyroid, adrenals (saliva), gut, and nutrients. She is a spectacular and meticulous doctor who has said a big FU to endos and GPs who know nothing about the thyroid. Her practice is mainly dealing with hormonal and nutritional health using natural and nutritional support, adrenal and hormone support, etc. I have to pay out of pocket for everything, including labs and medication for this and it’s a HUGE expense, but I do it anyway and do without other things. Otherwise I would have to rely on my VERY clueless GP. This thyroid dr. that I see on the side helped get my adrenals back, discovered the MTHFR mutation (and prescribed high dose methylfolate, which changed my life), helped my gut situation, and sex hormones. She is also willing to go to the mat with my GP who is an ass (and misogynistic) and thinks this dr. is intentionally keeping me hyperthyroid (based on my .006 TSH) and claims that FT3/4 fluctuates and is unreliable as a measure. My thyroid Dr. doesn’t ever go by the TSH. She goes by symptoms and uses the lab results to ‘pin’ what it looks like when I feel OK. She is virulent about clueless doctors. ALL the things I’ve heard from people on the forum (about cortisol testing, ferritin, iron, B12, etc, and how to test – 24 hours after T4, 12 after T3, etc, how to take medication) has all been told to me by this doctor. She knows her shit and I’m lucky to have found her.
So far, I’ve only been able to tolerate medication levels that bring both T4 and T3 low in the range, usually right above the lowest number. I have been able to tolerate slightly higher levels when boosted with Levo instead of higher doses of NDT (I am sensitive to the T3) . When it gets below the range, I bottom out energy-wise. It’s a very long story, lots of combos of T3, NDT, Levo, various brands of Levo (and of course I’m very allergic to a few brands inactive ingredients), just this, just that, various levels of this and that. Very systematic though. Very strategic. I hold each dose for 6 weeks unless I’m in a bad way, which is how I feel in the top of the range. RHR of 80+, jumping out of my skin, skittish mind, restless, can’t stop eating for more than a half hour, very little sleep, weight gain, wired and tired and massive chest pain. I just can’t tolerate it at all at high in the range. Plus the side effects of higher doses of medication, like hair falling out and nerve pain, make it difficult also.
I’ve tracked symptoms, but not as meticulously as you suggest and I haven’t tracked temperature at all. Just heart rate and symptoms. I will look up how to track my temperature – that is an excellent idea. The RHR has been a pretty good measure (going by Fitbit). Generally, if it’s under 60 bpm, I’m tired. Over 66/67 and I start to feel wired/tired/anxious/emotional.
Thank you for sharing about your school and career experience. I don’t have enough time to go into too much detail about what went into my decision, but it was 100% with the goal of a less stressful life (ironic, I know). The job I have had for the past 20 years (and is the only thing I’m trained for) is a moderately high stress administrative job. I’m training for a career in which I will be able to control my own schedule, there are few if any deadlines, and I’ll be doing something that doesn’t require the type of pace, multitasking and monkey mind thinking that puts a lot of stress on me. But I have to get trained first. The program is two years and I intentionally worked out a four-year plan, which is unusual, but they agreed to it. I have dropped classes when not feeling well and will do it again if I need to. I have to make money, now, and in the future. I have no one else. A lot of thought went into this decision, but I’m at the point in the program where a masters thesis has to happen and next year the clinical work, which won’t be a lot, but I’ll need to be dependable. I’m make it through and I really appreciate your suggestion to treat myself gently with all this. I really needed that reminder and will take it to heart. This will take as long as it takes. My health is first.
When you said: “If I was able to go back in time knowing what I know now about my illness, I'd choose a field to work in that is much more easygoing and flexible for a person who needs extra help or extra rest.” THIS is what I’m aiming for and what is possible in the career I’m being trained for, but it’s the interim, the actual training, that is difficult right now, even though I’ve doubled the timeframe. It is what it is and I need to see it through or have a ton of debt and no degree and the same stressful job as before. It will work out.
“I think if you want to fully explore your thyroid situation, and particularly if you want to try going off all hormone you probably need 6 months to a year where you're flexible enough to spend a few weeks in bed or chilling out if you need to, and overall having an easy life.”
You are so right about this. And I don’t think I will go off my medications, but I’m just exploring out loud and with you all what might happen, if this is even insane to consider, and in general pooling knowledge together to make a better decision. I think I will keep fiddling with it for now and see how it goes. Last night, for the first time in three months, I slept a little over 6 hours and I feel so much better. It’s the lack of sleep that’s breaking me.
Thank you so much SilverAvacado. Really. You are a wonderful human to have taken the time to respond so thoroughly and thoughtfully and with such wisdom.
You're very welcome Sounds like you have already thought of a lot of the things I mentioned, and are in track.
Some of the symptoms you mention on trying to raise hormone levels can sometimes be adrenals struggling to cope with T3. This can happen even when the dose is still to low for you (usually when it's very very low), and the adrenals just aren't able to cope with levels increasing. It's hard to tell the difference between this and just being overmedicated, but if freeT3 is still at the very bottom of the range it would probably suggest adrenal problems rather than overmedication. Most people will need the freeT3 in the top third or so to feel well, it's unlikely anyone would feel well with it right at the bottom.
I do think that going off all hormone can be a reasonable thing to do if you've got good reason to suspect you're not really hypothyroif. If you are really hypo you will only last a short while before you need to go back on. From when I was on T3-only just ten days was unbrearable, as you're taking T4 too it may be more like 3 weeks before you really really feel it. But I do think it will take quite a bit longer than that to get stable again after that time, and would need to have a nice easy life while you're waiting and seeing. One warning is that its somewhat common to feel better for a while on cutting out hormone even when you do need it. But it still eventually catches up with people, but can sometimes be quite a few weeks or even a few months.
I thought of another possibility for your results. This explanation is very simplified - there are far more bells and whistles than I will ever know or understand. And I've started by describing the process in healthy people.
TRH = Thyrotropin Releasing Hormone
Thyrotropin is another name for TSH (Thyroid Stimulating Hormone)
So TRH could also be called TSH Releasing Hormone (although it never is).
Step 1 : The hypothalamus (in the brain, behind the nose) is constantly monitoring the thyroid hormone levels in its environment and in the blood stream. It produces TRH in response to those thyroid hormone levels. When the thyroid hormone levels drop a bit then TRH production is increased. When thyroid hormone levels increase a bit then TRH production is decreased. The adjustments to TRH production are done in tiny increments and they go on 24 hours a day.
Step 2 : The pituitary (in the brain, behind the nose, next door to the hypothalamus) is constantly monitoring the TRH levels in its environment and in the blood stream. It produces TSH in response to the levels of TRH. When TRH levels go a bit low then TSH production is also decreased. When TRH levels go a bit high then TSH production is also increased. The adjustments to TSH production are done in tiny increments and they go on 24 hours a day.
Step 3 : The thyroid is constantly monitoring levels of TSH in its environment and in the blood stream. It produces thyroid hormones (T4 and some of the body's T3) in response to the levels of TSH. When TSH levels go up a bit then the thyroid produces more thyroid hormones. When the TSH goes down a bit then the thyroid produces less thyroid hormones. The adjustments to thyroid hormone production are done in tiny increments and goes on 24 hours a day.
The above is what happens in the healthy. But in the unhealthy...
If the thyroid can't produce enough thyroid hormones for any reason (disease, tumours, trauma) then the person has Primary Hypothyroidism (the most common kind of hypothyroidism).
If the pituitary can't produce enough TSH for any reason (disease, tumours, trauma, whiplash, head injury, Sheehan's Syndrome) then the thyroid won't produce enough thyroid hormones and the person will have Secondary Hypothyroidism.
If the hypothalamus can't produce enough TRH for any reason (disease, tumours, trauma, whiplash, head injury, I'm not sure about Sheehan's Syndrome) then the pituitary won't produce enough TSH and then the thyroid won't produce enough thyroid hormones. The person will have Tertiary Hypothyroidism.
If Primary Hypothyroidism has been ruled out as a cause of low thyroid hormones then doctors have to work out whether the offending organ is the pituitary or the hypothalamus. They refer to the person as having Central Hypothyroidism when they don't know whether it is Secondary or Tertiary.
In each type of hypothyroidism the treatment is the same - replacement of the missing thyroid hormones.
In the case of central hypothyroidism the TSH must never be used to monitor the patient's condition because the patient can't produce appropriate amounts and the TSH will always be low. It could be suppressed, below range, in range, or even very slightly above range. But because of this it can't be relied upon to help doctors to discover very low levels of thyroid hormones. Instead the thyroid hormones must be measured.
With doctors using TSH almost exclusively in diagnosing hypothyroidism I think that many cases of central hypothyroidism may never be discovered until the patient is very ill or possibly even in a coma or dead. Doctors have been taught that central hypothyroidism is very rare - and as a result they think they don't need to even consider it.
Primary Hypothyroidism :
High TSH
Low or below range T4
Low or below range T3
Secondary and Tertiary Hypothyroidism :
TSH - anywhere from suppressed up to just above range
I’m so grateful for all this information and you have NAILED IT. I don’t have primary, I have some sort of Central Hypothyroidism. I’m betting it has to do with the pituitary because ALL my hormones (and I mean all) have been low or below range since I started testing hormones in my 20s. HGH is also low, PTH low, cortisol, estrogen, progesterone, etc, etc. But maybe that happens with issues around the hypothalamus too.
?
I have had whiplash and also had head trauma when I was a kid from a bike accident. I also have Epstein Barr Virus. Not sure if that has anything to do with anything, but I’ve heard various things about that in relation to thyroid and pituitary.
I found the only previous thyroid test that shows both TSH and T4 (no T3 previous to the diagnosis test) and this was two months before the hypo diagnosis, in February 2013 (diagnosis was April 2013):
TSH: 1.3 (.340-3.5)
T4: .7 (.76-1.46)
Low-ish TSH AND T4!!!
How would I confirm Central Hypo? What tests should I get? I will probably have to do this on my own. If I ask my asshole GP he will take over my thyroid treatment and I don’t want that. I can see if the thyroid dr. I’m seeing would do this. I think her general feeling is that she is not going by the TSH anyway and it is treated the same way whether primary or secondary and wants to spare me the expensive out of pocket testing.
But I want it somewhere on record that I have central hypothyroidism and that my TSH should be ignored.
THANK YOU FOR ALL THIS.
It is confirming that I should stay the path and figure this out. I appreciate all the wonderful and wise people on this forum. So grateful for you.
Just in case it isn't clear to anyone reading this I must point out that I am not a doctor and have no medical training whatsoever!
How would I confirm Central Hypo?
I'm afraid my knowledge beyond the thyroid is very limited, and I don't know how an endo would test for central hypothyroidism. The first thing I can suggest you research is the hormones produced by the pituitary and the hypothalamus - and there are a lot of them. I don't know whether endos would usually test them all. The wiki articles have some useful summary tables.
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Thanks for letting me know it was useful!
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CFS/ME or Hypothyroid? that is the question!
