I have Graves and am awaiting an up coming Endo appt. After reading this, if anyone has got any good questions to ask?
Last blood result
T4 12.0 range 10-22
T3 7.4 range 2.0-6.0
So I decided to call the hospital Endo dept. I asked if an appt date had been set and I have an upcoming appt for 30 Sept. I was explaining my symptoms of a sore back, nausea and difficulty urinating to the receptionist at the endocrinology department. I am taking PTU as my ATD.
I got passed to over an Endo (I live in New Zealand). And here is where the story begins.
I said to the woman âdo you want me to tell u what has been happeningâ and before I could say âor do u want to ask me any questionsâ the woman said âwell thatâs why u rang today.â Ok.
So I explained the symptoms back pain, nausea and urinating and is it possible the PTU is causing them? No. Not likely was the answer. Youâve been on this drug a good while now (7 months). The woman said I was still thyrotoxic. I said I struggle with the balance of T4 and T3. The woman said the consultant has written that my T3 was the cause of thyrotoxicosis and I am T3 dominant. I said when my T4 gets low I lose the skin off my feet. Twice now this has happened I said. I asked about the block and replace option and would we discuss that at the 30 Sept appt? No we wonât be discussing block and replace because your T3 is the driver of your thyrotoxicosis and we will not be prescribing replace drugs(levothyroxine) as this will only boost your T3 even higher. This was not my understanding I said. My GP had discussed that I would do block and replace and I understand more T3/T4 suppression was needed than currently being applied. The woman said no you are not doing block and replace. We will discuss your thyrotoxicosis and more definitive options with you on 30th Sept.
Well Iâm glad I know this now 3 weeks before the appt that I will not be given an option of block and replace. I now have time to ask the members here on what they think that I should ask.
So I think if my brain is working. I am going to stay on the PTU until I get my T3 into range. No levothyroxine regardless of where the T4 goes because my thyroid disease is T3 driven. The Endo did not know why back was sore or why I had the nausea and suggested I go back to my GP for a third time.
For the back pain, nausea and difficult urinating (this is now back to normal) I have had urine tests and liver and kidney tests and they are all clear. CBC is good. No infections. CRP <1 range <5.
Thank u for reading. Any questions U can think of that I could ask?
Kindest regards always NIKEGIRL âď¸
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Is there any chance you could get a second opinion on the block & replace nikegirl? Re urination, are you able to drink plenty of fluids? Is your urine clear? Iâve had back pain before with a water infection that wasnât shown up with first urine test I had. Sending you very best wishes!
Hi Buddy. I am drinking ok. The back pain is my spine top to tail. I had leukocytes in my urine and prescribed antibiotics but was then told there was no infection hence the back pain didnât get better. If I want a second opinion I will need to go private. In fairness I am suppose to take 150mg of PTU a day but have been taking 80mg due to T4 going under range at 7 range 10-22. Endo is basically saying my Graves is T3 driven and that is the only number they are focusing on and I am saying when my T4 goes low my feet actually crack with deep her fissures and peel. Quite painful to walk. Maybe they were never going to do block and replace as Iâve only ever been given block drugs. For me I made the decision to save my sanity by taking 80mgs a day and keeping T4 in range rather than 150mg a day and T4 way under range just to get T3 into range. Am I missing something or am I being a dick?
What criteria do you have to meet to trial block and replace? Really feel for you, as the last thing you want is a battle with your endo about treatment. Can you go to appointment on 30th armed with some literature about how block & replace has been trialled more widely?
Usually leucocytes in urine indicates an infection but in âsterile pyuriaâ thereâs presence of WBC in the absence of infection.
There are several things it is associated with and in my own case itâs proteinuria (proteins in pee). When I was eventually diagnosed after years & years of low thyroid hormone my kidney function was under performing. Optimal T4 + T3 meds reversed the condition to an extent but not wholly.
Elevated T3 increasing renal function and GFR, so the effect on many other systems is opposite. However both hyper & hypo both risk impaired ârenal concentrating abilityâ and other conditions such as sterile pyuria. Ask for kidney function to be tested.
Re block & replace treatment that I really have no idea about - Endo appears to be saying you have a big conversion situation going on so any added T4 in her option is going to be converted taking T3 levels higher, and possibly even lowering T4 further.
Having a continued elevated T3 levels risks things like osteoporosis and cardiac issues as your systems are running too fast. In my ignorance Iâm assuming block stops the thyroid hormones at pituitary levels, however the suppression of TSH from replacement would impair conversion but may not be enough. What you need is something to further impair conversion.
Well done ringing ahead of your appointment. Any info gleaned is progressive, even if it's not what you want to hear at that time.
Iâm fairness I was diagnosed May 2020 and could not tolerate the carbimazole so flip flopped on and off to December 2020. In January 2021 I told my dr about PTU and managed to get a script in January 2021. I have got my levels down but as I wrote above when does replace start? Because all I am doing is blocking and yo-yoing. This is my fault. I refuse to allow my T4 to go a long way under.
Hi. You have raised some good points Kidney test was done and came back clear. GFR was ok. Liver was amazing. Nothing out of range. No elevated WBC or neutrophils acting weird. Yes I am on block being PTU. Replace is levothyroxine. Yes if they give me levothyroxine then I will make more T3 that I agree on. BUT And I am hoping someone with more knowledge comes on. I am prepared to increase by PTU in order to totally suppress my levels but ONLY if I get levothyroxine added BUT what happens then?
So back to your super conversion abilities and knowing how to control them. You may invite better responses with a post titled âHow to SLOW/CONTROL T3 conversionâ or similar đ.
ElaineMoore.com said T3 takes time to catch up so maybe after 7 months my body is catching up. I usually get half of whatever my T4 number is. That is consistent. No explanation as to why though?
I started B and R about 4 years ago and now do well on it. As you appear to be running out of options it would be reasonable you be allowed to give it a try. I cannot understand the rationale of completely blocking as you will become very unwell. Transitioning to BR can take a lot of close monitoring. I was moved from 5mg. Carbimazole up to 20 with the instructions to add in 100mcg. Levo after 6 weeks. After 2 weeks I was v hypo and on my knees so started the Levo which made me swing to very Hyper. This seesawing worsened my TED and it took 2 or 3 months before I felt well. I insisted on finding the lowest effective dose that kept me stable which was 10mg C/ 50mcg. L. which has needed fine tuning over the years. My advice would be yes try BR but only if you know you will be frequently monitored for the first few months.
Hi. It is good to hear from all people on this form as all advice appreciated it good to hear of a block and replace patient. Where was your T4 and T3 levels when u started?
T3 and T4 all over the place before starting BR. Immediately before starting BR and on 5mg C my T4 and T3 were top of range. After few months of adjustments T4/3 settled about half way in range. Minor changes over next few years mainly increasing Levo a little as T3 was dropping and I feel best when it is over half way. TSH about 0.07.
Thatâs really interesting. As u can see my T3 is always over but I can get T3 in range but T4 suffers and goes under. I donât understand why I wouldnât be a good candidate for B&R. I do take my ATD just not the amount the Endo wants. It was interesting that u wrote u did block for 2 weeks and were brought to your knees. For me that validated what I saw happening for myself and having experienced suicidal thoughts on this journey I couldnât do that to myself. I donât say that to make u feel bad. I say that because I was close to committing suicide. Do u like BR better than just Carbimazole?
All I can say is at the moment I am happy on BR. When first diagnosed and on C alone I knew zero about Graves and hadn't yet found this wonderful forum so don't know how things would have turned out. Because I still have high TRab and I suspect I now lean towards more Blocking TRab dominating causing me to need an increase in my Levo it makes adjustments easier on BR. Could you not agree with your Endo's suggestion to the higher dose to completely block on the condition you are prescribed some Levo to start replacement immediately you feel any hypo symptoms. Compromise is useful. Endo happy you are following advice but you both know you are going to go hypo and knowing you have the levo to hand would put your mind at rest.
High T3 is due to erratic release of hormone in the thyroid rather than conversion. Taking levothyroxine will not push up your T3 to any great extent, especially if you take more PTU to block your thyroid. Iâve not has Gravesâ so will leave it to other patients to give more advice. There is a useful article here btf-thyroid.org/antithyroid... .
I'm getting mixed up between Hashimoto's and Graves', sorry. In Graves' there is increased deiodinase due to the TRAb stimulating deiodinase. I would expect block and replace to give a lower T3 / T4 ratio because it cuts out thyroidal secretion. The thyroid also has a role in converting T4 to T3 and I don't know of any studies that show the effects of anti-thyroid drugs on this.
So, block and replace may reduce T3 / T4 ratio but against this is the concern that the higher doses of anti-thyroid drugs may give more side effects.
The best solution is to reduce TRAb and sometimes selenium can do this but I guess you probably know this already. Sorry for the confusion.
I began wondering if Block and Replace is ever done using PTU instead of the more usual Carbimazole . ( wondered if this is partly why they are saying no to it) Anyway , so far i found this .. ncbi.nlm.nih.gov/pmc/articl...
So it has been done ,, for a woman who didn't tolerate carbi and was (i think ?) in danger of getting pregnant so they didn't want to risk the low T4 situation happening.
Am still looking for stuff about it, cos for the life of me i can't see why they are saying that B& R is not worth a try for you.
I mean .... if your higher T3 is coming direct from your thyroid, then ? presumably you take enough PTU to knock T4/3 production off till T3 goes into mid range, or lower than add enough T4 to bring that back up.
Unless the issue is massively over-efficient T4 to T3 conversion (rather than too much T3 direct from thyroid), then i don't see why B & R wouldn't work.
Ok .... i know bugger all about it ..... but if they know so much more than us why cant they explain to you how come it wouldn't work for you just because your T3 is dominant. ? ..... cos their explanation so far seems flaky to say the least.
OK , i can imagine it may be tricky to time when they add the T4 ,and get the dose right , and therefore a short period of 'not enough T4' might be unavoidable if they don't want to risk T3 going too high , i do understand that , but perhaps you could cope with that for a week or so if you knew why it had to be done.
You know I love you. I really do. I had never even thought of B&R being a PTU issue. Rather Iâve been told âitâs taking too long issueâ. I can cope with a lot if I know why choices are being made. I donât understand why I get as much T3 as I do but was told today âitâs your T3 dominantâ. Iâm not Einstein myself and even I can see that âbut whyâ has never been explored and I suspect wonât be. All I can do is go and say I want to try B&R because Iâm not making headway here for the reasons explained above. T4 under, T4 in range and T3 over. Thatâs what I said to the Endo today. There is no balance. I suppose I could choose to stay where I am T4 12 range 10-24 and T3 7.4 range 2.0-6.0 and try and balance here. It was the comment about more definitive options that upset me and also the Endo had said âyou will not be doing B&Râ. Well the last time I talked with my GP I was so what changed?
Until they can explain WHY B & R would not work to block your T4 AND yourT3 production to a level suitable to then add some T4 , (which would obviously create some more T3 .... but i'm assuming not as much as your thyroid is currently chucking out) .. then id be tempted to think that this endo doesn't want to play with it for some other reason , like she's not used to doing it, or isn't confident , or it costs too much , or she can't be arsed with messing about with it and wants to get on with definitive treatment options.
Issuing a blank statement like " you won't be having it" makes me a little supicious that what she's saying is " I'm not giving it you " as opposed to " it can't work , or it's too risky, and here's why"
After all ,if it was the other way round and you had an otherwise interested and intelligent kid saying " but i WANT to run across the road without looking, i can hear if any cars are coming, so i'll be fine " .. would you just say " well you're NOT doing it! " or would you explain that some cars nowadays are electric so you can't hear them, and someone might be freewheeling down hill at 30 mph on a bicycle ?
If she can't explain a science based reason , i suspect she hasn't got one.
P.s she should have plenty of time left in the appointment to answer these questions, ..as presumably the time used in discussing "Would you like RAI or Thyroidectomy ?" will be quite short after you say "No , thanks" and "Not yet, thanks" ....... send her a list of awkward Q's before appt, so there's no excuse for not having the answers to hand.
And i'm tempted to agree with PurpleNails that it's possible the refusal could be partly due to concern that you wont take full dose PTU , since they have probably picked up on your fear of going hypo, and may have concerns that you'll want to introduce Levo before T4/3 are low enough. and i suspect that Block and Replace must be a case of 'block first,' and then replace when they know euthyroid /hypo has been achieved , in order to avoid worsening your T3 situation.
But hold on to your inner strength ..... you're going there to discuss facts and understand answers , to help you decide what you want to do next, you're not going there to 'be told what to do '. and if you don't like the suggested path forwards you can stay where you are for now. yes~ high T3 has some risks to consider , but you don't have a goitre getting the way of breathing , you don't have thyroid cancer. You seem close to finding a dose of PTU that gives 'enough' T4 without 'way too much' T3.
Evening. I am taking my mum to this Endo appt. very factual woman she is. I have already started making notes about objective points over the last 15 months. One point was from May 2020 to January 2021 I told my dr and Endo repeatedly that I could not tolerate the carbimazole due to physical side effects but was essentially told to get on with it. I see that as a failure of the system. In January 2021 it was me who told my dr about PTU as he had never heard of this drug alternative. Thatâs a system failure. I have made good steps to get my numbers down from T4 >100 and T3 at 48.6 on the PTU. I had a psychiatrist evaluation who diagnosed trauma from the hospital system and was told I should seek help from either a counsellor or psychologist. I was not referred through the hospital for this but rather I had to find this help myself and I have but it has also taken time. Thatâs a system failure as the irony of that situation is the psychologist I am using privately at ÂŁ95 a week works at the endocrine dept of the hospital I attend. I think your list of questions has very good questions that need to be raised and was exactly what I was going to do. I do not truly believe surgery or RAI is warranted. Itâs not what I want long term. If my liver was struggling because of the PTU then I would choose the surgery. I wouldnât sacrifice my liver for my thyroid. But I do want the choice of being able to try every option. My efforts may be futile at this next appt as from the sounds of the phone call a decision has been made but I will go with an open mind and a tonne of questions so at least I will walk away knowing their standpoint and whether or not I stay on PTU alone with lower T4 and higher T3 or I can try B&R.
The Doctor you spoke on phone has said you are âT3 drivenâ. They are probably under the belief a replacement Levo will also drive FT3 but now you can argue T3 is due to erratic release of hormone in the thyroid rather than conversion. The stable T4 likely balance it out better.
I think from the call you describe the doctors objective during the appointment will be to convince you to undergo RAI or surgery these are âdefinitive optionsâ Youâve always said you would not consider them.
It may take some convincing & commitment on your part for them to agree to give you B&R. I donât think the Doctor will admit it upfront but the refusal of a trial might be on the basis that you do not always take your full dose of PTU and replacement doses on top of uncontrolled levels would not be good.
Evening Yes I have just asked jimh111 the same question that I asked you. That way I was hoping to read up and get some knowledge before this appt as I havenât seen any info about it. Thank you for all your help.
Hello, I too have graves and I'm on my second lot of block and replace.When I first started it(titration failed basically due to not being able to get appointments at the correct time)I was on 40mg carbimazole until my free T4 was 10(10-18.7) and my TSH was 7.75(0.38-5.50).My endo then introduced 50mcg thyroxine.I then retested after 6 weeks and went up to 100mcg thyroxine which I stayed on(along with the carbimazole).This seemed to be a good level for me.I don't know if I read somewhere that once you introduce thyroxine your own thyroid naturally starts to produce less( I'm not 100% sure).I don't know how well you'd feel with free T4 of those levels.I didn't feel great but I know you suffer mentally if you're levels are low.Just thought seeing my numbers might help.Sorry no ft3 as they didn't test and I had only just joined forum and didn't know as much as I do now.Hope this might help in some way.Good luck
Thank you. That has been insightful to read. Yes it is a Sophieâs choice. Try B&R or stick with PTU only. I do suffer with mental health when my levels are low.
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