Hi. Thanks for reading. I am a Graves diagnosed patient with TPO, TSI and TRAB positive antibodies.
My latest blood test was
TSH <0.001 range 0.5-4.0
T4 5.0 range 10-24
T3 3.5 range 2.0-6.0
So. I saw the top Endo at my hospital in New Zealand. She said I am T3 dominant so T4 doesn’t matter EVER!!! I am 5% to 10% of a population within the Graves patients who has T3 thyroxicosis.
If I feel emotionally depressed IT IS NOT MY THYROID
I have hypo symptoms and I was told IT IS NOT MY THYROID. Constipated, cold, low mood, exhaustion, long period of 12 days.
No block and replace option. Because T4 is irrelevant to me.
So. I am to stay on my ATD. If my T3 was to be a 7 range 2.0-6.0 I WILL have a heart attack or stroke and how will SHE FEEL?
T3 is best between 3.5-4.5. 5.5 is too high.
And that was my 6 monthly appt. surgery would be 6 months away but only if they agreed to take me. Whatever that means.
Big sigh. 😮💨
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NIKEGIRL
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I don't know what any of it means. Sounds like gobbledegook to me. Never heard any of it before. But, what do I know, I don't have Graves. However, I would love further explanations, so shall read any replies with great interest.
Why do you think you'll have a heart attack if your FT3 got to 7? Surely, if you have Graves, it's been higher than that in the past.
Is she saying that you have thyrotoxicosis now, with those results? Because that doesn't look like thyrotoxicosis to me. Your FT3 isn't even mid-range. In fact, you look hypo, based on those results. So how come your symptoms aren't to do with your thyroid? I don't think she knows what she's talking about.
Morning. Firstly let me start by saying that at this appt I was met with aggression so that is what the Endo got back. I stood my corner. So. I am T3 dominant and what that means according to the Endo is that my Graves’ disease is driven by T3 and that T4 will never be balanced with T3 EVER and T3 is the driver of my disease. T4 is irrelevant for me and 5% to 10% of the Graves community who present like me. Her words not mine.
I asked the Endo would it be ok if I felt well and my T3 was 7.0? range 2.0-6.0, I was testing the Endo to see how flexible on the range she would be. Her answer was a sharp NO, you WILL have a heart attack or stroke or osteoporosis and how will SHE FEEL? that was her answer. My answer was “that sounds like u just threatened me and I don’t like the tone of what u r implying at all”. She answered back with “my patients feel best with a T3 between 3.5 and 4.5 and that even 5.5 was to high”. So my brain told me “I have to fit in the range and also fit into her magic box of 3.5-4.5 no matter how I feel”. Jesus help me today.
So my symptoms in the last few weeks have been extreme fatigue, constipation, very cold, lack of appetite, long period, cracked skin on feet. Yes hypo symptoms and was told again “I was in the sweet spot and not hypothyrodic”. I turned around and said “I do not agree with you. I do not feel well. I feel very unwell and at times I feel very low emotionally”. Again I was told “it WAS NOT my thyroid and I needed to go back to my GP” whom I see every 10 days roughly, I actually do see him every 10 days. No joke and it costs me NZD51 (£26) for the privilege. So I agree with you I feel hypothyrodic but was told “I AM NOT”. But I am in the sweet spot despite feeling like shit.
This was from the top endocrinologist.
This was my actual experience on Thursday just gone.☹️
Good for you for standing up for yourself! And for resisting the temptation to punch her on the nose - which I'm sure you must have felt! What a load of codswallop! I think she was making it up as she went along. Can't you get a second opinion? I don't know what the system is in NZ, but that's what I would insist on.
I'm not sure but I couldn't tolerate T4 only and it gave me horrendous palpitations. whereas T3 calmed everything and didn't need an implant in my heart (the cardiologist was contemplating this due to severe palpitations I was having during the night). Our bodies are so different in what suits some people doesn't suit all people.
I do hope you get back to feeling well again with all symptoms resolved.
I am now fit and well without T4 As long as I have T3 my health has been restored.
It is always 'trial and error' and if we've been well on a certain replacement then later on get unpleasant symptoms it is usually down to a change in the tablet,
I remember reading that no-one could possibly survive on T3 only because T3 can't and doesn't cross the blood-brain barrier!
It is well known that the brain can do much of the T4-T3 conversion required for its own cells. I suggest that some T4 might well be needed for the brain to manage its own T3 level optimally. Relying solely on T3 might not work as well.
At the same time, I am aware there are quite a number who appear to run on T3-Only and have no other source of thyroid hormone. So back to individuals being, well, individual.
I’m glad u didn’t get offended by my reply. In no way was I aiming any aggression to you. Because I was met with aggression that is what she got back. If she had met me with empathy she would have got the softer side of me and the tears I hold inside me that cascade like a river flowing fast in a storm. I have 6 choices, yes 6 choices in front of me.
1. Stay on 75mgs of PTU and stabilise my blood levels
2. Ask the GP for levothyroxine and trial block and replace for 3 months
3. The GP refuses to prescribe levothyroxine so I source my own privately and trial block and replace with the GP’s knowledge for 3 months
4. surgery
5. Get a second opinion from within the hospital
6. Go to a private Endo and trial block and replace
Goodness no! No offence taken. I understood perfectly.
I think if it wereme, I'd go for N° 6. And if that didn't help, I'd buy my own levo and trial block and replace. Or, I might just try coming of the AT drugs and see what happens.
Because the TSH is suppressed at <0.001 I am not likely to be in remission and prior to getting my latest blood result I was on 150mgs of PTU daily so remission is not likely.
My gut tells me to take option 1. Hold.
Hold for now. See where my blood ends up in 4 to 8 weeks. See what happens to T3. If T3 is 6 or 7 then T4 will be 10 or 12. Not ideal. See how I feel emotionally and psychologically. If I don’t feel ok then go for option 2 and then option 3.
I don’t think there is a right or wrong answer here. But. I would not consider surgery at all until I had tried block and replace and given myself the chance to see if balancing the T4 and T3 worked for mentally, physically and emotionally.
Because the Endo said NO to block and replace she has left me with a very clear path of what options I have.
I am not looking for drugs. If I was I would have bought my own T4 and told no one. I am looking for wellness and want to do it in the correct manner where I am honest and transparent. This may not be the case. But again. I want to be in a position whereby I at least tried everything.
A very good point u have raised. What I was told on Thursday by the endocrinologist is that when my TSH does decide to rise it will be a signal that my Graves’ disease is changing. I was told that my TSH is a personal marker to my body and that when it changes it is a signal that the disease is moving from the hyper stage into a more normal stage. This is what I was told. What actually happens remains to be seen. Worth noting is no antibody testing since June 2021 and no one is implying I am in remission so I am to hold the course of 75mgs of PTU a day.
My TSH has never recovered after RAI for Graves Disease in 2005:
In around 2014/ 15 my TSH was still at 0.01 and why I found myself on here looking for answers as to why I was having my dose of T4 reduced and kept in an ever decreasing circle of wellness and offered anti depressants.
This is why I gave up listening to the dogma, and why I've had to self medicate my own way back to wellness to get my life back.
The TSH in Graves is known to be a totally unreliable marker of anything.
The Graves antibodies can sit on the TSH receptor sites driving down the TSH reading, and it looking like you are " hyper " and over medicated, when in fact, the opposite is probably more a true picture of where you are and why it's imperative you are dosed and monitored on your T3 and T4 levels.
Tracking a TSH reading for any thyroid health issue is a nonsense.
That seems like a very high dose for someone whose FT4 is below range, and FT3 below mid-range. I would want to at least start slowly reducing it and see what happens.
I was taking 150mgs daily of the PTU doing suppression and now have been told to take 75mgs a day. I will no doubt tweak myself. I go on how I feel not what number I am in a box. But I don’t run very high. A T3 of 7 is my upper limit so long as T4 comes in at 10-12 range 10-24
Yes, I know that, but you can have levels like that with Hashi's. Graves is usually much worse from what I've seen on here. But, like I say, I don't have it myself.
Hey thats the crap I got told last week. Said my t3 was the driver and that I had not swung hypo. I haven’t even been told yet if I am Graves or not so they either already know and aren’t telling me or they are talking out of their rear ends. I actually had a scan yesterday and it is consistent with Graves but haven’t had the trab/tsi and was told I would have blood tests in just over a weeks time. I’ll let you know what happens in a couple of weeks as I am meeting with a senior consultant so will ask why I was told that. Sorry you were met with aggression, it’s really not necessary with all the stress you already have. ☹️
I’m not angry at the endocrinologist. I do understand being T3 dominant. I would like to have tried block and replace but told a flat NO. I’m ok with a NO if there is sound logic behind it. But I will not tolerate statements that I do not agree with and I am within my right to have my own thoughts and not agree with the endocrinologist. It will be interesting to see how your situation unfolds. I have had the antibody testing but not a scan. Good luck and thank u for your support
Totally agree, you should definitely be able to question your treatment. I’m going to read up about all of this and on block and replace and properly inform myself as I want to be equipped for that meeting. I’ll feed back and hopefully get you something useful. 😊
What I understand of B&R. You will need more ATD to block the levothyroxine being converted into T3. The levothyroxine will create more balance between T4 and T3. This process of B&R requires more monitoring. B&R can be successful.
When your TSH rises it’s responding to low levels. It’s not a sign Graves is in remission. It likely means your levels are far too low. That would be caused if an endocrinologist who’s focus it to get TSH into range without a care about how low FT4 (or FT3) goes. Simply saying symptoms are not thyroid related and passing the buck shows how wrong she is.
I would think it’s pretty inevitable your TSH will stay low as it’s been suppressed a long while (prolonged hyper)
It’s why dosage should be judged by FT4 & FT3 and the TSH unreliable.
This difficultly is you have had under range FT4 & FT3 has still been over. If that’s not an example for difficulty controlling or balancing levels I like to know what is. It’s clear case for block and replace. To refuse and argue against because they don’t do block a replace is simply wrong.
Actually, I think she making it up on the spot. You can guarantee that had you been a patient presenting with high FT4 and under range FT3 she’d be saying conversion is irrelevant, your FT4 too high FT3 doesn’t matter like all the normal clueless endos.
Hi DD ... if it helps . NIKEGIRLS fT3 is only this low now because they insisted she increase PTU. When she's been on lower dose of PTU then fT4 was lowish in range but fT3 was still over (about 7 or 8) but as soon as they increase PTU to get T3 in range , fT4 goes below and she feels dreadful.
(Hence she wanted to try Block and Replace to try to get a better fT4 level while keeping fT3 in range, cos they don't want to allow her to continue with fT3 that high. )
I’m would be confident this is Graves & not hashis.
The current low readings are as a consequence of very high PTU doses. (Inappropriate left high when they should have been reduced, or replacement given)
I think you persevered with this high dose because they led you to believe block and replace a possible option. But the discussion was met with “no”. Extremely cruel & I think the endo & team should be ashamed of themselves.
In the beginning your levels were:
FT4 120 (19-24) 2020%
FT3 47.4. (2.5-6.0) 1271%
TRab >100 (<0.8)
This is severe even for Graves & I would not recommend stopping anti-thyroid.
This may be irrelevant to your situation but I just thought I'd point it out...
When a patient develops hypothyroidism and thyroid hormone levels start to run low, one of two things seems to happen...
1) Both Free T4 and Free T3 end up low in range or below range. For example, the very first time I ever had Free T4 and Free T3 tested at the same time from the same blood sample (it was done by the NHS), my Free T4 was 14% of the way through the range and my Free T3 was 11% of the way through the range. So my results were very well balanced, they were just really low. At the time I wasn't on any thyroid treatment and had never been on any treatment.
2) Another possibility... Free T4 drops very low in range or below range and Free T3 is much, much higher in range. So it would seem that in some people, in the early days of thyroid hormones reducing, the body tries to frantically convert as much T4 to T3 as possible. This makes sense to me because Free T3 is the active hormone and it is needed by every cell in the human body, so the body prioritises it.
I assume the same pattern of results could occur in someone who has Graves and is taking anti-thyroid drugs at doses that are too high for them.
I must admit your endo sounds like a very unpleasant person to me, without an ounce of compassion, and no understanding of what it feels like to be low in thyroid hormones. She's completely clueless. But then I think that about most doctors.
Do you know if you can import thyroid hormones to New Zealand? And can you do tests without doctors being involved?
I suggest that you try to optimise your nutrients, if you haven't done so already. Even when my thyroid hormones were very low I felt noticeably better when I improved my nutrients.
Not to muddy the already murky waters here,but... Background first: (Skip to lower paragraph to avoid the background): I was dx Graves initially (2002) and then years later was told, hmm, probably Hashi. During the first dangerous year of Graves, they first tried to get me to agree to radiating the thyroid away (RAI) or surgically removing it; I said "what?! Kill the victim of this attack? Let's solve the attack first." Poor little struggling thyroid. Had to change docs three times. Finally found one to put me on Tapazole (like carbimazole) and it quickly brought levels down. Well, quicky at first then a gradual reduction over a period of 13 months. (Be patient nikegirl! you can do it!) Then bad bad hypo, that did not respond to T4 despite everal docs saying that was all they would give me. 75, 100, 125, 150--ket getting sicker and sicker, cold, depressed, hair fall, consitpation, terrible hypo life. Finally with the help of this forum and a good London doctor, got T3 added. That was 2010. Now back in US and have graduated to T3 only with excellent results.
My point for THIS question of Nikegirl's: First, I am so sorry you are suffering with this. I'd say first job is a new endo. THEN they can work with you on the six options. I think it's pretty important to not be suffering with Graves, which is so dangerous. It took me over a year to get levels back to normal. But: it also took NUTRITION an VITAMIN support. Went gluten free. No processed foods. Ferritin, D3, B12, and other levels monitored and supplemented (Magnesium turned out to be a game changer, but also D3, extremely important. Later on when you are well, see if Hashimoto's is in the picture.
New endo; then choose options; gradually get back in balance/out of the grave danger of Graves; then see about keeping out of hypo land. Hang in there. This forum helped me so much; good luck!
Thank You for your message. I’ve done a lot of the good things as recommended on this forum with regards vitamins and nutrition. Each piece is an important part of the thyroid puzzle. I agree with u. Why remove the victim. Let’s look at the cause of the attack but also I see the damage being bestowed physically and emotionally and mentally on my body. I find this disease to be cruel and unrelenting. But I suppose you could apply that to any disease. I’m glad u found some good help. Food help makes all the difference. Kindest regards always NIKEGIRL ✔️
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What my GP said 🤔
Thyroid labs after 6 Weeks on 75mcg, would appreciate any advice 🙂
Not sure what to do
