Just had the first endo visit post-thyroidectomy. TSH still suppressed after years of Graves, fT4 at 1.4 ng/dl, fT3... no one knows, not tested. Endo made it pretty clear that he views TSH as the golden indicator. I pushed back with: 1) normal healthy thyroid produces both T4 and T3, why not start an athyreotic patient on both, to approximate normal function closer than mono-T4 replacement would, and 2) what 'lever' is he willing to use if his golden indicator shows me in range but I feel sluggish/ am gaining weight on a controlled diet, etc. His answers: 1) that's is a big 'controversy' in endocrinology, and the assumption is that peripheral deiodination of T4 results in enough T3 for the body's needs. This seems odd- because an athyreotic patient has lost on avg. 20% of prior T3 available to their body from the very get-go. He had no answer there. 2) The lever is to increase levo- but to quote 'even there there is an upper limit we won't go beyond'. Okay... So you're telling me if I feel junk but the TSH is in range... I need to grin and bear it?!
I've decided:
1) I WILL give it some time and mono-T4 a chance to hopefully work, but not having any of this 'labs OK, patient dead, ergo: all systems normal' BS...
2) Failing mono-T4 to work, I will search everywhere in my area and beyond for a doc who is willing to consider both labs and how I feel outside of labs.
On this forum, it sounds like many of you have run into this dogma. Any comments on how you've handled it for yourself would be helpful. On the contrary, if you no longer have your thyroid and have done OK on levo only (no lethargy, sluggishness, or weight gain that belies your efforts), I'd love to hear about that as well. Thanks all.
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Arrigo
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I still have my thyroid and I've never been hyperthyroid. (I'm hypothyroid.) But now that you have no thyroid, I'm afraid you are going to have to get used to doctors treating you just like they treat me and others like me. Doctors basically lump the majority of people with thyroid disease into two piles - hypothyroid and hyperthyroid.
You're one of the people who has changed piles.
For hypothyroid people - however they got to that state - the treatment is almost always the same. This is written from the patient point of view, not that of doctors.
1) Optimise Free T4 and Free T3. If you are only taking Levothyroxine (T4) this can be like trying to fight with one hand tied behind your back.
Optimal means different things to different people.
Many of us on this forum like Free T4 to be somewhere between about 60% and 80% of the way through the range. Your sweet spot could be anywhere and none of the suggested optimal levels are set in stone.
Many patients have discovered that the best indicator of how well they feel, and the most important thing they have to get optimal is Free T3. Many of us on this forum like Free T3 to be about 50% - 70% of the way through the range. But, again, your sweet spot could be anywhere.
If your conversion from T4 to T3 is good then you might find your Free T3 and Free T4 are optimised at a level that suits you and with a TSH that suits your doctor. If that happens, you're laughing.
But conversion is often poor, particularly in those without a thyroid, and people end up with a Free T4 which has to be high in order to get remotely near to the optimum levels of Free T3. And having a high Free T4, even with a reasonable Free T3, often makes people feel unwell.
Some of the hypothyroid people on this forum will end up taking, say, Levothyroxine (T4) and Liothyronine (T3). In those circumstances it is advised that people get T4 as close to optimal as possible first, and only then to start adding in T3 if optimal T4 leaves you feeling awful.
There are other options. Some people end up taking T3 only, some end up taking NDT - a product which has active ingredients (T4 and T3) made out of pig thyroid gland, although sometimes people use bovine (cow) NDT. NDT is the product which was the only one available for about 50 - 70 years, starting in the 1890s when it was first developed. If a doctor starts slagging it off (many of them do) point out that it was very successful at treating hypothyroidism for decades before T4 became the standard treatment.
And if anyone slags off T3 point out that John F Kennedy took it and every healthy person in the world has it in amounts that suit them. (JFK's health was a mess - he had hypothyroidism and Addison's Disease, and possibly other problems.)
2) To help conversion you need to optimise nutrient levels too. You need to get the following nutrients tested :
Vitamin B12
Folate
Vitamin D
Ferritin (iron stores)
and, if possible, serum iron
If you get these tested and give us the levels and reference ranges we can give you feedback on them and suggest what you can supplement with.
There are probably other things people can add, but it is worth trying to walk before you attempt to run.
Well said Humanbean .. your experience, albeit miserable at times , has made you pretty much of an expert on much pertaining to Thyroid Disease .. your Generosity is beyond belief ...and so much appreciated by so many .Luv Mx🌹
Excellent points! Esp. the one with the hand tied behind your back- exactly how I see it as well. I'll make sure to take notes on your post re optimization and % thru the range (which I understand as, if your fT4 for example is dead in the middle of the lower and upper lab limits, it's at 50% thru the range- pls. correct if inaccurate, thx). I'm defo gearing up for another battle. Thought getting rid of the hyper battle (nothing to sneeze at either!) would end up making things better... which it ultimately might. However, I will advocate to the limits of medical dogma and beyond. Thanks again for the info!
Yes, middle of the range is the same as 50% of the way through the range.
This link has a calculator you can use to calculate the percentage. It refers to FT4 and FT3, but it can be used for any test with an upper and lower limit to the range plus a test result.
I might be a part of the percentage of people that only feel normal if my FT4 levels are over the range but that doesn't make me over medicated. I just need that much Levothyroxine to function, might be due to only having half a thyroid. I agree that getting T4 closest to optimal and then adding T3 is the best. I'm working on that myself. Good you know all this up front.
Hi. What can I say about that appointment? He has made his point very clear. Was he as rude as you have implied because if he was I would look for another Endo ASAP as he could keep you u well.
He was not rude. He WAS taken aback by the breadth and depth of info I presented to him, and by the time we got into the deiodinase enzymes, peripheral conversion, questioning why handicap me right off the bat with the 0% T3 vs. the T3 a healthy thyroid produces... I might've been 'read' as the rude one. Not that I care: I've done my research, I see what actual educated patients like you guys on this forum experience and factually know, so I will not be told that if TSH = golden indicator and labs are in range but I feel junk, we go with the numbers. So yes ultimately I might have to ditch him and go to someone who's more comfortable going to the 'limits' with me, if that's what ends up being necessary. I would love NOTHING more than to be that person whose liver, kidneys, and brain are conversion machines on steroids, and my body only needs the inactive T4 to function optimally, despite the dip in T3 since I'm athyreotic now... But if that turns out to not be the case, I will FIGHT for good health. One of the reasons I finally decided to do a TT (got 4 separate opinions on that, too!) was such that with that hyper monkey off my back I might return to better health. I'm not a crier. But I cried in the hospital hours after the TT, just finally realizing that was a battle I can lay to rest 7 years in- and that I felt freer. And I will be d@mned - excuse the French - if I'll allow the medical establishment to interfere with this new battle for health. No.
Hi Arrigo, your Endo experience is so disheartening and almost exactly the same as my own except mine took place 23 years ago after RAI and it’s really depressing to know there are Endos just as underwhelming these days.
I would hope you had FT3 tested alongside FT4 before the thyroid was removed (as part of your Graves diagnosis). Isn’t it reasonable for you to have the same panel of tests following the removal of the thyroid? Can an Endo have the full picture of your health without it?
It was disheartening but at least with her very good questioning Arrigo knows exactly where she/he stands as far as the endo’s thinking goes and that he’s not going to change his beliefs for anyone let alone a patient - so hopefully Arrigo will vote with their feet and find someone better.
Mini, you can be sure that that was the 1st question I asked him: why did you not test T3 or fT3, since really it's the fT3 that's the 'fire' at the cellular level? His answer was double-pronged: 1) he said that it is still too early, my TSH remains suppressed after years of Graves, so the clinical picture is not yet clear- come back 6 mos later. I negotiated 3 mos instead, and told him that if I start feeling bad (sluggish, tired, weight gain despite controlled intake) I'm pulling in the appt. He agreed. 2) he said well... fT3 assays are 'not as accurate as TSH and fT4'. I replied that I was stunned to hear that, because not 2 months ago he was testing all 3 indices when I was hyper, and repeatedly pointing out how far both fTs were outside of the upper range... So I asked, did the accuracy of the fT3 assay decline in the last 2 months?! He just looked at me.
My sister and I have been without thyroids for many years and Levo works well for both of us. Definitely no weight gain, I'm actually underweight and struggling to put any on !
That must be so frustrating... psoriatic arthritis is no joke. My family has a lot of autoimmune issues, and my dad struggled with autoimmune juvenile rheumatoid arthritis- he was telling us how it was impossible to get out of bed, as a young kid. So without the possibility to move freely, when you suffer from psoriatic arthritis, I can understand how it would be so difficult to be active at all, right...
Actually it took 2 years to get the PSA diagnosis and during those 2 years I was still physically active (fitness instructor) but I struggled everyday all day with pains unlike anything I have ever had . I saw many rheumatologist during those first 2 years and was always told you do too much you need to rest more (blah-blah) as the weight kept piling on.
I didn’t stop being active until on day in 35 degree weather I went out for my early morning 10 mile round trip walk in the woods when my feet pains became so bad I just collapsed unable to get up and so I just laid down on the ground for 2 hours (no humans around and me without a cellphone) when I finally got up it took me another 2 hours to walk home because I couldn’t lift my feet I could only drag them....and this is when I could no longer fight the pains and became house bound, I quit my jobs and quit really living because every step is like walking on glass barefoot... Im finally getting a little better but I have a long long road a head of me.
Same here - I think the weight gain was one of the first things I (and it seems everyone else...) noticed post-thyroidectomy, and honestly, I have no sense of familiarity with the way my body functions at all now. Sometimes I wish I still had thyroid issues instead of 'no-thyroid' issues...but thankfully it seems that not everybody struggles after thyroidectomy, though
I have found very few individuals that haven’t suffered from weight gain after thyroidectomy and most of the people won’t talk about it either. This is a real issue that people who are looking at thyroid removal might have to deal with and its not easy trying to lose the weight. I worked out the entire time after the surgery and still I was gaining weight at an alarming rate even seen nutritionalist who after looking at mounds of food diaries felt I ate good and that with my exercise said I shouldn’t be gaining weight.
I was a fitness instructor at the time of my thyroidectomy and pretty darn fit.
I don’t see any reason to not talk about issues after your thyroidectomy its a real issue in-spite of what doctors say. I was told prior to my surgery that maybe 20-30 pound weight gain and it would REVERSE it’s self once my medication dose was correct... What a crock of horse manure these doctors have no idea how one person’s body vs another’s persons body will react to being thyroid-less even with proper medication. Its like these broad ranges on the thyroid test and doctors believing every person falls into these ranges ...pfft.
bantam12. That is WILD. This endocrine axis is incredible... isn't it. I trust that you and your sis feel well on levo only even outside of the weight aspect, then? You must be super-converters peripherally, it's the only thing I can think of. Very encouraging to hear.
Having been talked into Radio a few years ago my Endo put me on 100mcg's of levo and told me I would feel better soon. He only looked at TSH, no T3, no vitamins, basically nothing. When I returned after three months almost unable to walk or function, he tried to blame me for not being compliant. I had most of the Graves symptoms plus Hypo. Breathless, swollen legs, weight gain and just feeling rubbish. We had a robust conversation about T3 medication and he actually told me that the HealthUnblocked Thyroid site was full of cranks, he also told me that T3 and vitamin blood tests were not required. At that point, I sacked him and decided to look elsewhere. I found a doctor that looked at the whole picture but is has been an expensive and painfull journey. It turned out my T3 was very low and T4 far too high. I am now on NDT, gluten free and take appropriate vitamins and the difference to my health has been amazing. I can't say I feel as well as pre Graves diagnosis but am so much better than I was on Levo.
I feel so sorry for people who just accept the rubbish they are told by these so called experts and I am terrified that soon I may not be able to afford my meds, It's a scandal!!!
Good for you, Todd! So terrible that you had to fight so hard for something as elemental as the right to feel healthy- but good for you for the determination to do it and for your success! I agree: if you try to stay active, treat your body like a machine to be fueled, and generally take care of yourself, yet you struggle to function... the fault lies with the meds, and your doc should be helping, not hitting you upside the head (symbolically) with your 'perfect' labs.
I told him that I am willing to give his mono-T4 a shot to see how it works- but that I will not take no for an answer if I feel that I require either a higher dose of T4 or a compounded T3/T4 treatment ultimately. He said he is not adverse to that. but he does want me to start out on what he recommends. That's fine. But yes, to your point, I will defo change him out if/when needed. One of the concerns I have is that lots of endos - in the States at least - appear to focus on diabetes. Fair enough, the pancreas is an endocrine gland as well- and there's an epidemic of diabetes- but if I do change endos, I'll seek out one with particular interest in the thyroid, or more precisely in the hypothalamus/pituitary/thyroid axis. I asked him yesterday... now that the pituitary is 'waking up' after years of not having to produce TSH... and it finds out that there's no thyroid to prod to make thyroid hormones... is there some suspected impact to that? He said he didn't think so. Well, I think there just might be... So I'll keep reading medical journals for fun 🤓
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