One area tends to confound me a bit here. I’m in the US and focused on thyroid cancer and those of us who have had thyroidectomies. This is one of the best thyroid forums around (excellent information, great mods and caring support) and I often refer folks who come to our US thyroid cancer forum here if they are from the UK or Europe.
One of the things that I and some other thyroid cancer advocates have noticed is that those with intact (to some degree) but dysfunctional thyroids seem to require much higher levels of thyroid replacement hormone to achieve a decent quality of life, while many of us post cancer related thyroidectomies do well on much lower doses. I do hope in the future (I’m swamped with projects at the time) to do some real number crunching to compare doses and levels and QoL. I’ve not seen any such comparison in the research plus much of the research seems to be done on “normal” healthy people, leaving most of us out.
What I would find helpful is if people would indicate somewhere (in their profile?) if they have had a full or partial thyroidectomy.
Again, thanks for being a place I can send our UK friends to.
Patti in Arizona
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I cannot really comment on your findings; all I know is this: I have a colleague who had a TT twelve years ago, and she has been doing great on 125 mcg of levo ever since. Never gained weight, no hair loss, no other hypo symptoms whatsoever. I have Hashimoto´s, diagnosed in 1999, and struggled on as much as 200 mcg of levo daily for years. I put on a lot of weight, retained fluid, lost hair, looked like I was 80 in my 30s...not even a suppressed TSH and high in range FT4 levels made any difference. Self-ordered labs showed low in range FT3 so I started self-medicating. I am slowly getting back to normal, but I can already tell you I fit your description. I have no idea why that is, or why people with dysfunctional thyroids need more hormone replacement than people without thyroids, but my own experience corroborates your findings. If you ever find out the reason, it would be really interesting to know!
I think there is a *lot* more to it than simply not being able to convert well. I’ve also come to appreciate the seesaw ups and downs people with Hashimoto’s and Grave’s go through.
I don't think the size of the dose is just to do with whether you have a thyroid or not - I don't, killed off by Hashi's, not TT or RAI. It's also to do with how well you absorb in the gut, how well you convert, and how well thyroid hormone is taken up by the cells. I think it might also have something to do with how long you were hypo before diagnosis and treatment, plus for how long you were under-medicated, as so many of us are. There are so many variables.
I have a friend that has Hashi’s. She lost her thyroid to late-stage Lyme Disease. Supposedly, her thyroid can still put out minimal amounts of hormone. On U/S, her thyroid appears like Swiss cheese. She is 5`2” and weighs approx 100 lbs. her NT dose is 1 3/4 grain.
I would also fit your profile. I had a TT in 2015 for a large multinodular goitre. I do well on 100mcg levothyroxine. No weight gain, but I do eat a low carb diet and no processed foods. I did have a brief period where we had a lot of celebrations and meals out over about a three week period and I put on about 3 kilos. Once I returned to my normal eating pattern it came off. I went slightly more strictly low carb to get it off and it was quite a relief to see that I could drop weight, considering a lot of what one reads and hears about thyroid patients and weight loss problems. I often read about people on much higher doses and think I would be a hyper mess if I took that much. Interesting discussion subject.
Interesting, I had a full thyroidectomy, just reduced to 100 mcg, started on 175 10 years ago, always overly suppressed. Tests in a few weeks will tell if T3 is high enough, but feel ok. Do we need less Levothyroxine as we get older? Now 68. Weight has always been a problem but I have Polysistic Overies which is getting worse with insulin resistence.
Personally I don’t think it’s useful. I feel like it would be yet another box to place people in. There are seems to be some strict thought processes going on ie Levo works for the majority therefore it must be the fault of the patient who doesn’t respond as well to Levo alone or a certain dose. Or youre hyper therefore we’ll remove your thyroid and give to RAI.
There’s just not a one size fits all, there are to many variables with each individual. If cancer is the cause then it may be more cut and dry because removal and treatment needs to have a quicker response whereas many with seemingly no reason for hypo/hyper or autoimmune reasons the treatment plan seems to be implemented more slowly. A watch and wait approach. It can be too slow and if the damage is done it can be widespread and recovery none existent or slow. Unlike cancer, I believe that Hashi’s is not taken seriously enough. GP’s are too nonchalant about the illness ‘it’s a lifelong condtion but don’t worry, all you have to do is take these little pills for life, count yourself lucky’ The reality is that they don’t treat the whole person and often leave them under medicated, patients allow this because they are not educated enough to understand their own condition.
So for me, in simple terms. Thyroidectomies = quicker treament. Autoimmune = slow to treat.
Having had a TT in 2003 my experience is that cancer doesn’t equal quicker treatment, you have a TT and then are in the system the same as everyone else. It is a long process where, I, like many of you, have struggled to be heard about how I feel on different doses and suffer varying degrees of symptoms of both hyper and hypo. Having any thyroid disease is a lifelong condition and we all need to support each other with information and what has helped us as individuals. Thyroid disorders can be frustrating, debilitating and depressing, let’s focus on positives we all have to help rather than the negatives.
Apologies I was looking at it from my perspective. 11yrs for proper treatment is a long time to wait. I doubt it would take 11yrs for a cancer treatment. That was my comparison and I don’t think I was being negative? Regardless. Let’s not focus on the positives, for me that does not equal optimal treatment for all, it might suggest that we should be grateful which is what most medical professionals are going for 😩
Interesting comments. My thoughts were not to “box” anyone in to categories but more wondering about the additional issues that confound treatment. A big one being that most of us aren’t tested appropriately unless we begin to advocate for ourselves (and for so many of you in the UK having to resort to private testing). And if the test results don’t fit in the box physicians don’t look beyond but instead engage in patient blaming. It’s like research into treating thyroid disease and long term hormone replacement stopped when Synthroid got FDA approval in the US (in 2002).
Tania Smith does a fantastic job of drawing out the science
(thyroid patients.ca) but getting patients and doctors to read (and docs to utilize) it is a whole other issue.
I wonder this as well-if a person has a thyroid or not. I had a tt and alternate 88/100 Tirosint (88 one day, 100 the next) plus 2.5 mcg Cytomel daily. However, I have so many symptoms. The symptoms have varried over the years, depending on my medicine doses, but I’ve felt awful for 5.5 years. I always imagine that if I had a thyroid that could produce anything, maybe I’d feel better, but it doesn’t sound like that is necessarily true.
You’re not on a very high dosage of thyroid hormone replacement for someone without a thyroid. I suspect you’re at least a little bit undermedicated. 2.5mcg of liothyronine won’t make a whole lot of difference.
Generally, full replacement (unless you’re tiny ) would be nearer 100mcg of Levo and 20mcg of liothyronine. Obviously it varies a bit—there’s not a one size fits all—but your dosage looks on the low side.
Looking at your history/post - the folks here are really good at helping you ferret out issues but they can only do it if you provide sufficient information such as ranges for all your lab work.
For me personally too much T4 causes heart issues like you've described but T3 does not (as long as I am splitting my doses throughout the day). Too much T4 and not enough T3 are known to cause the symptoms you describe (and have for me).
Why don't you update your post healthunlocked.com/thyroidu.... It sounds like your doc is caring but because her Mom has Hashimoto's doesn't mean one size (her Mom's) fits you.
Yeah, my doctor is very much one size does not fit all because of what she watched her mom go through. Unfortunately I know the heart stuff is due to the t3 because it doesn’t happen until I take my t3 meds each day. (I keep it separate from my tirosint.) and it drops off as the end drops off and picks back up for my second dose each day.
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) would be nearer 100mcg of Levo and 20mcg of liothyronine. Obviously it varies a bit—there’s not a one size fits all—but your dosage looks on the low side.
Self-dosing without self-monitoring of thyroid levels.
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