Had Graves and total total thyroidectomy 2014. Was on 100 Levo and felt ok ( maybe oversubscribed with Tsh 0,5 and t4 always in the upper end) until 2 years ago when I had a lot of stomach issues due to stress and anxiety. Now when I supplement with betaine hcl and digestive enzymes it’s so much better. BUT since then I had a roller coaster with my labs. I followed a protocol from a naturopath with a lot of fiber a year ago and my TSH raised from 1,5 to 12 in only a month!
Tsh SLOWLY decreased but it’s not returning to my normal results.
My last labs:
2020-08-14
TSH 2,6 ( 0,3-4,2)
T3 3,2 ( 3,1-6,8)
T4 23 ( 12-22)
Decreased dose from 100 Levo to 5 days 100 and 2 days 75 due to anxiety and weight loss.
2020-09-18
TSH 2,4
T3 3,3
T4 21
2020-10-29
TSH 5,5 ( !! the same day as ovulation my has a connection?)
T3 3,2
T4 20
After this result I added t3 ( cytomel) 2,5 mcg since I guess a low conversion isn’t helping my high tsh.
The plan is to take 5 mcg cytomel after two weeks.
My question is: i noticed I have a higher heart rate since adding cytomel ( have an Apple Watch) . Is it normal for just adding such a small dose or is it in my head? Should I decrease my Levo?
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Can I just add that if you want to read around Graves Disease, which is an autoimmune disease, there is one specialist website that I found invaluable founded and run by Elaine Moore who has herself Graves disease and went through RAI thyroid ablation back at the end of the last century.
No thyroid hormone replacement works well if your ferritin, folate, B12 and vitamin D aren't maintained at optimal levels so, for me, these are now on a maintenance daily dose and a yearly blood test, just to see where they all sit.
T4 is a storage hormone and needs to be converted by your body into T3 the active hormone that the body runs on. This conversion can be compromised if your vitamins and minerals are not maintained at optimal levels.
Since you have lost your own thyroid hormone production you have lost trace elements of T1, T2, and calcitonin plus a measure of T3 and T4 said to be about 10 T3 and 100 T4.
It takes much skill and time to find the right levels of T3 and T4 for you and there can be much trial and error getting the balance right for you - are you under an endocrinologist and getting some help and advice or " flying solo " ?
I'm with Graves Disease, diagnosed 2003 and received RAI thyroid ablation in 2005 and now manage lingering Graves, thyroid eye disease and hypothyroidism.
Having failed to acquire NDT and T3 through the appropriate channels I now self medicate as Levothyroxine failed for me in about 2013/14.
Adding T3x 6.25 to a slightly lower dose of Levothyroxine - ( I dropped 25mcg T4 ) as my T4 was over range worked, but I couldn't sustain the product line and thought I 'd also try NDT which was, then, more widely available and this worked better for me as I felt less turbo charged.
I now manage lingering Graves, thyroid eye disease and hypothyroidism and am greatly improved
Hi and thanks for your reply! How nice to hear that you improved! Managing graves is certainly not easy. How much NDT are you taking and how are your levels now? My private dr told me she could also prescribe NDT if I want to. I chose adding t3 as a first option but as I read more about NDT it might be the best choice.
You are fortunate you have an endo prepared to treat you with other than just T4 :
All you can do is try and see what suits you best:
We are all different and what works for one doesn't necessarily work to another.
However we all need our ferritin, folate, B12 and vitamin D at optimal levels to be able to help convert the T4 into T3 which is what the body runs on and too low a level of T3 gives you hypo symptoms as too high a level of T3 gives your hyper symptoms and no one wants to be at either end of this range, and the frustration is finding where you need to be for your wellness.
With NDT however you dose to symptoms and not a blood test result or a computer ; so make sure your endo is conversant with how to treat NDT as it does go against some of the guidelines that some medics seem to be constrained by.
I had terrible levels after my stomach issues and prior using betaine hcl and digestive enzymes. I started supplementing with magnesium, b-complex, zinc and vitamin k. Since the thyroidectomy I also supplement with calcium and vitamin D due to hypocalcemia.
I felt good, better than in a long time when last blood was drawn. So I was chocked about the high tsh. Now after a week with only 2,5 mcg T3 I feel over medicated. Anxious and higher heart rate. I just wanted the tsh to go down. So afraid to get eye problems...
Forget the TSH - once on thyroid hormone replacement it is the least important, with your T3 level being the most important number to watch :
Generally speaking when taking synthetic T3 and T4 ( as opposed to NDT ) it's suggested that people feel better when both their T3 and T4 are in the upper quadrants of the ranges.
With NDT it's all about a high T3 and a relatively low T4 at least in my experience. My last yearly result showed my T3 slightly over range and my T4 at around 20% through the range :
I am in no way hyperthyroid and have settled on a dose of NDT 1 +1/2 grains which works out at 57 T4 + 13.50 T3 ; I have no stomach issues, and take this relatively small dose at around 3 in the morning.
If your stomach issues do not resolve you may well need a higher dose than this, as I read gut issues can impair the efficacy of any thyroid hormone replacement, so in a way you need to try and repair and replenish your whole body before expecting any thyroid replacement to work well.
Graves patients develop thyroid eye disease from graves antibodies. Not from being hypo. You don’t develop thyroid eye disease from thyroid replacement hormones or hypothyroidism
Can I just say if you were looking for someone specific to answer this question you need to press their reply button, otherwise they are not notified and will not be aware that you have responded to them.
Ok - the TSH was originally introduced to be used as a diagnostic tool to test for hypothyroidism in someone on no thyroid hormone replacement.
Once with a diagnosis, because of a high / over range TSH and prescribed, and taking thyroid hormone replacement, it is essential that we are dosed on both T3 and T4 blood tests with the plan to get both these vital thyroid hormones to levels that restore wellness to the patient.
This generally means that both T3 and T4 will be in the upper quadrants of their ranges when on T4 treatment only :
When introducing synthetic T3 - Liothyronine bear in mind it is about 4 times more powerful than synthetic T4 - and if your T4 level before adding the T3 is near or over the top of the range it's suggested you drop down your dose to " make room for the T3 " .
It's generally suggested that 25 mcg T4 equates to about 6,25 mc T3 ; so work to around a 1/4 ratio of T3 to T4.
It is a fine balance and it seems trial and error.
Maybe you need to get your vitamins and minerals up to optimal levels before you introduce the T3 ?
If you felt better on the T4 go back there, and regroup :
I spent over 2 years repairing and replenishing my body from the inside out before I was well enough to consider either a T3/T4 combo or Natural Desiccated Thyroid.
The TSH is the least important number and since you have Graves Disease it is a known fact that a TSH after the so called " treatment " with either a thyroidectomy, or RAI ablation, is a totally unreliable measure of anything and means diddly squat.
If you want to read further around Graves Disease can I suggest the Elaine Moore Graves Disease foundation website, run by Elaine herself, who also has this poorly understood and badly treated autoimmune disease.
Thank you so much for your informative reply! I might have to ( like you) wait and replenish my body before introducing t3. It’s been a year now since I started to take care of my gut issues and stress levels and it has taken me until now to feel my gut and mind are somewhat healed . Maybe it was to soon to put on that extra stress on my body.
Anyway, I decided to do a tsh, t3 and t4 test tomorrow even though it’s only two weeks since adding t3. After that i will decide if I’ll go back to mono therapy or reduce my Levo.
Just be aware the TSH lags behind T3 / T4 levels and again, another reason not to dose/monitor by TSH readings.
The TSH has no bearing on your weight, metabolism, or well being or blood pressure, but your level of T3 dose does.
Hypo and hyper are the 2 opposite ends of the same stick :
Too much T3 and you can have symptoms of hyperthyroidism and too little T3 and you can have symptoms of hypothyroidism.
Sadly some symptoms can overlap and when you have lived with hyper symptoms fully understand your not wanting to go back there - why would anybody.
I can't help thinking you may well be hypo rather than hyper and jumping to the wrong conclusion as you T3 is very low - and it is difficult when you've forgotten what " normal " feels like.
I was fine on T4 only for around 7 years and then it was like I had " kangaroo petrol " and only good in short spurts for a limited time.
It is more sensible to wait a little longer than 2 weeks before doing the blood test as T4 is a storage hormone and slowly reduces over several weeks but if the T3 isn't suiting you anyway why bother with the blood test anyway ?
I also recognise here the ' Graves " tendency to want to do everything yesterday !!!!
The vitamins and minerals are very important to keep optimal irrespective of what thyroid hormone you are taking, and you are now in the driving seat and just do what feels right for you.
Hey there I've just edited the previous post I just sent - don't know if you've read it yet, and don't know if you get notified when I go back in and say other stuff !!!
A fully functioning working thyroid would be supporting you in a daily basis with approximately 100 T4 + 10 T3 :
T3 is the active hormone that the body runs on and said to be about 4 times more powerful than T4 : I read the average person uses about 50 T3 daily just to function.
Just looking back your symptoms of anxiety and weight loss were happening when just on T4 and you lowered your dose from 100 to 75 mcg thereby making you more undermedicated.
On T4 only both T3 and T4 need to be balanced and most people feel better when both these vital hormones are in the upper quadrant of the ranges, with a conversion ratio of 1/ 3.5-4.50 T3 to T4. at about a 1/4 ratio T3 / T4.
So to you find out your conversion ratio when on T4 only you divide your T3 result into your T4 result and your August result above gives a T4 + 23 and a T3 + 3.2 so this works out at a conversion ratio of over 7 which shows immediately that you are not a good candidate for T4 only and do need to add in T3 to find anything like your previous good health.
Even with excellent vitamins and minerals you will be struggling on T4 only and if you can't get on with T3, maybe see if your endocrinologist will trial you on Natural Desiccated Thyroid.
Is this an NHS endo who is supporting you or private - sorry - can't remember ?
I was declined a NHS prescription for both NDT and T3 when my conversion was way out at 5.5 but yours is even more dire, and feel the NHS should be helping and trialling you as T4 alone isn't working well at all.
I live in Sweden and go to a private dr. Our NHS doesn’t accept thyroid patients other than those with Graves before and under treatment. My dr is not an endocrinologist but very interested in thyroid problems. Actually she asked me if I didn’t want to try nature Thyroid instead.
I didn’t feel the need for anything other than T4 until now. And that’s because I want my tsh to go back to normal. I never felt under medicated. In fact I always felt more hyper than hypo. I feel very energetic and never feel tired during the day. I also don’t gain weight easily. In fact I’ m a bit underweight and have difficulties going back to my normal weight. My current weight is 53 kg ( 114 lb).
I noticed over the years that I’m very sensitive to to much thyroid hormone and with a t4 of 21-22 I feel totally hyper and loose weight right away. With a t4 of 20 I feel fine.
If I reduce my Levo then maybe I’ll feel fine with t3. Can’t it just be that I have too much thyroid hormones without reducing t4? I can’t reach my dr so I don’t know with how much I can reduce. The plan is to add another 2,5 mcg on Saturday and then reduce Levo. But I’m scared to feel totally over medicated then since I know that it take some days for t4 to decline.
My symptoms now is 5bpm higher resting pulse, looser stools and bad nights sleep. I don’t feel the anxiety though that I feel when on too much t4.
I know that you should wait 6-8 weeks to see changes but the reason I want to do labs tomorrow is also because my last result was so strange with that high tsh. I wonder if it was because of me having a cold 2 weeks earlier or the fact that I was ovulating that day.
A high TSH is indicative of undermedication when on T4 only :
I do not think T4 is the right hormone replacement for you as your conversion is way out at 7 and most people seem to feel more well when this number is down at around 4 ;
The obvious answer is to drop some T4 and add some T3 - to rebalance these two vital hormones, working on a 1/4 ratio T3/T4 which means 25 mcg T4 equates to about 6,25 mcg T3.
I think you may do better on Natural Desiccated Thyroid as this contains all the same known thyroid hormones that your own thyroid supported you with : namely :- trace elements of T1. T2 and calcitonin plus a measure of T3 at around 9 mcg and a T4 measure at around 38 mcg per grain/tablet.
In this way you have a measured dose of T3 x 9 mcg + T4 x 38 mcg per grain/tablet.
You stop what you are taking one day and the following day start slowly taking NDT :
You dose to the relief of symptoms and not a number of anything :
You monitor your blood pressure and temperature daily :
You start with 1/4 grain for 1 week :
2nd week add a 1/4 grain then 3rd week add another 1/4 and then by the 4th week you will be on 1 grain and hopefully, slowly, feeling a little better.
If all ok, repeat weekly increments until, if, you get to 2 grains when you stay on that dose for 6-8 weeks to let it bed in and then do a blood test and see if your T3 had moved.
If it has and you are happy to continue and still have symptoms you start again increasing weekly by 1/4 grains :
One week you will feel you have gone backwards and ' not you ' anxious, nervous, irritable, - so you drop back down to the previous weeks dose and that is your best dose on NDT.
I am only on 1 + 1/2 grains of NDT so that works out at 13,50mcg x T3 + 57mcg x T4 :
My TSH is suppressed / low at 0.01 : but then it always was when optimally medicated :
My T4 low in the range about 20% through and my T3 iat around 90 % through the range - I have no symptoms of hyperthyroidism and if anything run myself slightly hypo.
This is the best I have ever felt and I also tried a T3/T4 synthetic combo :
I maintain vitamins and minerals at optimal levels and take just a yearly blood test more to see where these are than where my thyroid hormones are, as I feel pretty good .
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