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Changing from T4 to T3 meds...advice needed please.
I have TPO antibodies @ 200 (<60) and most thyroid symptoms, the worst being fatigue, hair loss, depression, brain fog, accelerated ageing, digestive issues, suicidal thoughts, dry, snake skin looking skin, rashes and a host more. It took "20" years to get diagnosed as my TSH was normal...yes, the usual story of being held to ransom by the rotten TSH even though I have all of the other symptoms and no other explanation for them. This ridiculous attitude of TSH being the golden seal test for thyroid has led me to losing 20 years of my life to this illness and havent been able to work at all for over 2 years. I'm 44 female and look like I am 65!
I have seen every specialist and so far been diagnosed with all of the "syndromes"; CFS, IBS, Fibromyalgia, Henoch-Scholein Purpura, Food and Environmental allergies, hives, low vit levels etc, etc.
Finally found an Endo who actually knows what he is doing, a miracle, I know!! He has diagsoned euthyroid Hashimoto's. However I have been on synthetic T4 replacement for 6 months my level was at the bottom end of the range @ 11 (10-20). Recent follow up tests now show my FT4 is @ 19 so right at the top of the range but my FT3 has actually dropped, still at mid range but lower than when I started the T4. The Endo has now prescribed synthetic T3 of 20mcgs once daily and advised to stop the T4 meds all together. He didnt actually say I had a conversion problem but I am guessing that is what he is thinking??
Can anybody please help me to understand this? I dont see the Endo again for 8 weeks and due to start the T3 meds today and a little apprehensive. I would love to hear from anybody who is on synthetic T3 or Tertroxin (Australian brand of synthetic T3) and any side effects or benefits. Is it normal to completely stop T4 and replace with T3 as I see most people are on a combination of both T3 and T4? Wonder why he is just prescribing the T3.
I know also realise the problem the Dr's face when prescribing. Apparently they are not allowed to prescribe T3 until the patient has been on T4 replacement for a time and the Dr can prove a resistance or conversion issue before the medical authorities will approve the T3 drug on the pharmaceutical scheme as it is an expensive drug whereas T3 is cheap. Geeeshhhhh... I have to pay a fortune for the first script and then "hopefully" they will agree to allow me to have it on the scheme!! I would like to try NTH but in Australia and it just not something that is prescribed here. They all say it is "out of date" treatment and too difficult to control dosing so I have given up on trying to get that. Too tired to argue with these Dr's anymore, in fact too tired to do anything much at all.
I would like to know about side effects others experience so I can prepare for them. And I would LOVE to hear any success stories from T3 meds. Please, oh please, let there be some success stories.
Any advice would be gratefully appreciated. Thank you so very much for taking the time to read my story.
I have seen every specialist and so far been diagnosed with all of the "syndromes"; CFS, IBS, Fibromyalgia, Henoch-Scholein Purpura, Food and Environmental allergies, hives, low vit levels etc, etc.
Finally found an Endo who actually knows what he is doing, a miracle, I know!! He has diagsoned euthyroid Hashimoto's. However I have been on synthetic T4 replacement for 6 months my level was at the bottom end of the range @ 11 (10-20). Recent follow up tests now show my FT4 is @ 19 so right at the top of the range but my FT3 has actually dropped, still at mid range but lower than when I started the T4. The Endo has now prescribed synthetic T3 of 20mcgs once daily and advised to stop the T4 meds all together. He didnt actually say I had a conversion problem but I am guessing that is what he is thinking??
Can anybody please help me to understand this? I dont see the Endo again for 8 weeks and due to start the T3 meds today and a little apprehensive. I would love to hear from anybody who is on synthetic T3 or Tertroxin (Australian brand of synthetic T3) and any side effects or benefits. Is it normal to completely stop T4 and replace with T3 as I see most people are on a combination of both T3 and T4? Wonder why he is just prescribing the T3.
I know also realise the problem the Dr's face when prescribing. Apparently they are not allowed to prescribe T3 until the patient has been on T4 replacement for a time and the Dr can prove a resistance or conversion issue before the medical authorities will approve the T3 drug on the pharmaceutical scheme as it is an expensive drug whereas T3 is cheap. Geeeshhhhh... I have to pay a fortune for the first script and then "hopefully" they will agree to allow me to have it on the scheme!! I would like to try NTH but in Australia and it just not something that is prescribed here. They all say it is "out of date" treatment and too difficult to control dosing so I have given up on trying to get that. Too tired to argue with these Dr's anymore, in fact too tired to do anything much at all.
I would like to know about side effects others experience so I can prepare for them. And I would LOVE to hear any success stories from T3 meds. Please, oh please, let there be some success stories.
Any advice would be gratefully appreciated. Thank you so very much for taking the time to read my story.
For anyone coming across this in a Search, use sustained-release T3 at a low dose for an extended time (4-6 months, at least) until the T3 receptors become clear of blockage by rT3. When they do, you'll feel temporarily hyperthyroid, and best not to be on a high dose of T3 at that time.
Thank you for your comment. Yes, getting the prescription is the major problem I am experiencing. Both Endo's I have dealt with state they dont prescribe NTH as out of date medication and too hard to control the doses so I have given up on even trying to discuss this issue!
Thanks again.
Thanks again.
Natural thyroid hormone is available in Australia. You need to find a compounding pharmacy to have the thyroid extract made up. Doctor's prescription is needed.
That's awesome you found an open minded endo!! That definitely helps...I "fired" mine a few weeks ago and am currently endo-less lol...I'm better off endo-less than with the idiot anyway!! We'll both figure it out in time!!
Take care!! :)
Take care!! :)
Hi Nat,
Still struggling to get the right dx and meds. At least I have found an open minded Endo who is prepared to prescribe T3 and look into conversion or resistance problems, that is the hardest part of the battle with all of this.
Its such a roller coaster hey! I know stress and any sort of illness knocks me around too. Just recovering from a rotten sinus infection and that took "ages".....ugghhh.
Glad you are doing ok with nothing too major at the moment, good to hear!
Take care Nat :)
Still struggling to get the right dx and meds. At least I have found an open minded Endo who is prepared to prescribe T3 and look into conversion or resistance problems, that is the hardest part of the battle with all of this.
Its such a roller coaster hey! I know stress and any sort of illness knocks me around too. Just recovering from a rotten sinus infection and that took "ages".....ugghhh.
Glad you are doing ok with nothing too major at the moment, good to hear!
Take care Nat :)
:) thanks again gimel. Yes, I am "extremely" fortunate to have found this Endo and in no way want to alienate him!!!
Ya, not sure why he doesnt just run a RT3 but he seems to do those "ratio" tests and picked it up from there so maybe he can see it in those tests, not sure. I will discuss with him in further detail.
Thanks again for the advice, I will talk it over with him.
Ya, not sure why he doesnt just run a RT3 but he seems to do those "ratio" tests and picked it up from there so maybe he can see it in those tests, not sure. I will discuss with him in further detail.
Thanks again for the advice, I will talk it over with him.
Hey!
Yeah, I'm doing ok, usual ups and downs I guess lol...but nothing too major at the moment. I got sick (tonsillitis) about 4 weeks ago now and that sent me hypo as it ALWAYS does with me so I'm still working on getting the thyroid levels back to where they were!!
How are you keeping?? :)
Yeah, I'm doing ok, usual ups and downs I guess lol...but nothing too major at the moment. I got sick (tonsillitis) about 4 weeks ago now and that sent me hypo as it ALWAYS does with me so I'm still working on getting the thyroid levels back to where they were!!
How are you keeping?? :)
Thanks for your reply and help.
This is my 2nd Endo and he didnt really discuss too much with me and I forgot to ask him for the blood results...rotten brain fog!
I have been struggling for 20 years to get some sort of diagnosis and I am still going through the "trials" of meds as my new Endo is the only one who wasnt interested in my TSH and instead took my symptoms, antibodies and low T4 reading into account. However, he has also dx me with "Post Deployment Syndrome" so symptoms are being cross related to that dx and not just my thyroid. I have no idea if he is correct with the PDS dx, I never know what to believe when a dx includes the word "syndrome" since I have already been dx with CFS, Fibro, IBS etc.
When he orders bloods he orders "ratio's, TSH, T4, T3 / 1600 8/12 is the one I have on hand and due in 8 weeks after starting T3 replacement. I have no idea what the ratio's are for.
I discussed the blood results I received from my GP which I had requested to be done in the interim of my next specialist appt. These are the results I posted in my original post above. I asked him if it was normal for my T4 to be so high and my T3 to be dropping. He stated 'no, I am going to change your meds to T3 ". He then went on to explain, in great length, the legal implications of having to be able to "prove" I need this drug and that I would have to pay full fare for the first few scripts and he would then be able to "apply" for it to be prescribed under the medical benefits scheme. But he didnt go into any further details about my actual condition, I guess he is waiting to see what happens after 8 weeks of T3 replacement??
He did mention stopping the T4 med in case I develop a "reverse" problem. Apart from that the instructions were to simply stop T4 and replace with a single dose of 20mcg T3 in the morning, that was it!
I havent started the T3 as I am also concerned about the "Hyper" effect. I have already been through the hyper stage of Hashimotos (not diagnosed but I know I went throught it from my symptoms at the time) and it was just awful. I only weigh 52 kg's now and cannot afford to lose weight. I dropped down to 46kg's when hyper. I am thinking of splitting the dose to stat with as you advised. I just dont know what to do about stopping the T4 all together?? I have been reading and apparently overloading on T4 can cause a RT3 problem if there are convesion or resistance issues and the T4 then blocks the T3 receptors so they cant absorb. Maybe that is why he wants me to stop the T4??
I know, I should ask more questions! I will take a list to my next appt so I can remember them! Sorry for the long reply and thanks again for your help.
This is my 2nd Endo and he didnt really discuss too much with me and I forgot to ask him for the blood results...rotten brain fog!
I have been struggling for 20 years to get some sort of diagnosis and I am still going through the "trials" of meds as my new Endo is the only one who wasnt interested in my TSH and instead took my symptoms, antibodies and low T4 reading into account. However, he has also dx me with "Post Deployment Syndrome" so symptoms are being cross related to that dx and not just my thyroid. I have no idea if he is correct with the PDS dx, I never know what to believe when a dx includes the word "syndrome" since I have already been dx with CFS, Fibro, IBS etc.
When he orders bloods he orders "ratio's, TSH, T4, T3 / 1600 8/12 is the one I have on hand and due in 8 weeks after starting T3 replacement. I have no idea what the ratio's are for.
I discussed the blood results I received from my GP which I had requested to be done in the interim of my next specialist appt. These are the results I posted in my original post above. I asked him if it was normal for my T4 to be so high and my T3 to be dropping. He stated 'no, I am going to change your meds to T3 ". He then went on to explain, in great length, the legal implications of having to be able to "prove" I need this drug and that I would have to pay full fare for the first few scripts and he would then be able to "apply" for it to be prescribed under the medical benefits scheme. But he didnt go into any further details about my actual condition, I guess he is waiting to see what happens after 8 weeks of T3 replacement??
He did mention stopping the T4 med in case I develop a "reverse" problem. Apart from that the instructions were to simply stop T4 and replace with a single dose of 20mcg T3 in the morning, that was it!
I havent started the T3 as I am also concerned about the "Hyper" effect. I have already been through the hyper stage of Hashimotos (not diagnosed but I know I went throught it from my symptoms at the time) and it was just awful. I only weigh 52 kg's now and cannot afford to lose weight. I dropped down to 46kg's when hyper. I am thinking of splitting the dose to stat with as you advised. I just dont know what to do about stopping the T4 all together?? I have been reading and apparently overloading on T4 can cause a RT3 problem if there are convesion or resistance issues and the T4 then blocks the T3 receptors so they cant absorb. Maybe that is why he wants me to stop the T4??
I know, I should ask more questions! I will take a list to my next appt so I can remember them! Sorry for the long reply and thanks again for your help.
Hi Nat,
Yep, I'm back on these boards "again", thanks for wishing me luck, appreciated. Hope you are doing ok these days!
Take care
Dee
Yep, I'm back on these boards "again", thanks for wishing me luck, appreciated. Hope you are doing ok these days!
Take care
Dee
Just a couple of thoughts for you. Why did the Endo decide to stop the T4 meds altogether and change you to the T3 med? I ask this because there is no need to drop your FT4 level below the midpoint of the range. It is important to raise your FT3 into the upper part of the range high enough to relieve symptoms, so prescribing some T3 med is a good move.
The second thought I had is why would the doctor make the meds change all at once, rather than going through a transition? Due to the difference in half-life of the two meds, your FT4 level is going to go down somewhat slowly, compared to how quickly your FT3 level will increase. I would be concerned that you might have a hyper reaction by just adding in 20 mcg of T3 all at once. I know that the 20 mcg of T3 is about the equivalent of 80 mcg of T4, but I would want to add in the T3 slowly, starting with 5 mcg and allow several weeks for your body to acclimate, then add another 5 mcg, and continue this way until you achieve the desired symptom relief. Slow and sure is the best way to go.
Also, I thought you might get some good insight into clinical treatment of hypothyroidism from this link. The link is to a letter written by a good thyroid doctor for patients that he consults with from a distance. The letter is sent to the Primary Doctor of the patient to help guide treatment.
http://hormonerestoration.com/files/ThyroidPMD.pdf
The second thought I had is why would the doctor make the meds change all at once, rather than going through a transition? Due to the difference in half-life of the two meds, your FT4 level is going to go down somewhat slowly, compared to how quickly your FT3 level will increase. I would be concerned that you might have a hyper reaction by just adding in 20 mcg of T3 all at once. I know that the 20 mcg of T3 is about the equivalent of 80 mcg of T4, but I would want to add in the T3 slowly, starting with 5 mcg and allow several weeks for your body to acclimate, then add another 5 mcg, and continue this way until you achieve the desired symptom relief. Slow and sure is the best way to go.
Also, I thought you might get some good insight into clinical treatment of hypothyroidism from this link. The link is to a letter written by a good thyroid doctor for patients that he consults with from a distance. The letter is sent to the Primary Doctor of the patient to help guide treatment.
http://hormonerestoration.com/files/ThyroidPMD.pdf
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The doctor mentioned dropping the T4 med in case you developed a "reverse" problem. If the doctor suspects that you might have that problem, why not just test for Reverse T3 and be sure? At any rate, there seems to be different opinions about how to treat excess RT3. I am sending a PM with info on that subject. After reading it, I think you should give a copy to your doctor and ask about his thoughts. At that time you should also discuss with the doctor your interest in phasing out the T4 gradually and incorporating the T3 the same way. Your doctor seems to be more knowledgeable and receptive than most, so you don't want to alienate him. Talk it over.