[Face72 August 8, 2012 at 7:11 pm Post count: 1]

#1059265

Hi. I am new here and have a couple of questions. Up until about 2 years ago, it seemed that the Synthroid alone did well for me. However, that has changed. My TSH has been all over the place, and my FT4 remains in the upper end sometimes a hair high and FT3 remains in the very low end ..2.3. I saw a thread on here from back in May of this year about the T4/T3 combo. Since I tend to get hypo symptoms, my emotions are all over, aches, weakness, hair loss, ridges on nails, dry skin, face gets red….I do not know what to do. I saw on that blog the moderator Bobby, tried to switch, and ended up back on Synthroid. Can I ask if there are any specific supplements one might take that help with the proper conversion? My endo until today, refused T3, but because I bugged him enough, broke down and decreased my does from .137 to .112 with 5mg Cytomel (broken in 1/2 dose 2x a day). Any thoughts as to what direction to go. I am so lost and confused with all of the information out there. I have met wonderful people on the sites who have quite a bit of knowledge and I know this is not a one size fits all situation, but I just wish I knew what way to go. Also, my PCP wrote me a script for Naturethroid. Do I stay on T4 only, take the combo, or take the NDT??? oh, and what foods are folks like us supposed to eat? I am hypo now, so do I follow a hypo diet? Can we have iodine? I know one can give me a direct answer, but any and all advice is appreciated. Sorry so long!
Cheers
Face

[KimberlyOnline Facilitator August 9, 2012 at 10:42 am Post count: 4294]

#1173733

Hello and welcome!

I’m sorry to hear that you are feeling so poorly. I think your first priority is to contact your endo and your PCP to get them on the same page and clarify which meds you should be taking, as you seem to have conflicting prescriptions!

Synthroid is T4 only, while Cytomel is T3 only. Naturethroid is actually a combination T3/T4 drug. It’s really important that you get these docs to agree on which meds you should be taking and in what dosage!

I’m not aware of any specific diet recommendations for patients who are hypo, except for the usual recommendations around taking replacement hormone (i.e. spacing out your meds from food/coffee, and especially from soy, iron, and calcium).

Foods that are high in iodine (such as seaweed wraps) should be avoided in patients who are currently hypER, but I have not heard of any issues with patients who are hypO.

Take care – and please check back to let us know how you are doing!

[beach45 August 10, 2012 at 5:04 am Post count: 178]

#1173734

Hello and welcome here!

Only from my experience with Graves and treatment and post treatment listening to others too, that we need to find our own niche working with our doctors. There are many who do very well on Synthroid alone for years post RAI and TT and like in your situation it does not seem to be working very well at all. It is very good you are working with doctors on this issue and I agree too with Kimberly that the doctors should be on the same page to best benefit your good quality of health.

For myself, I have not gone hypothyroid just yet 14 weeks post RAI myself yet starting to have those miserable hypothyroid symptoms. I charted in excel my dosages of antithyroid Methimazole, blood test results and symptoms while on Methimazole 20 months and now also post RAI blood test results and symptoms, and I saw that I was completely miserable with a FT3 in the lower end of what is in range 2.0-4.4. All similar symptoms that you are having.

What I am seeing from my research and listening to others, that it is not a one size fits all here. Even some endocrinologists are saying that there may be a need for T3/T4 combo to help improve patient’s quality of life and there is no set agreement either where TSH should end up; or is TSH testing alone sufficient post RAI or TT when the patient has been so called stabilized on T4 for a while. As far as I read in medical journals and listening to all kinds of doctors, endocrinologists, thyroid eye doctor of mine and other people, nothing is written in stone here and further research is needed.

So with all that said, I did find this article which I believe is okay to post this particular link here on this forum (if not, please Kimberly let me know). For myself, Synthroid alone may work just fine once I hit hypothyroid which I hope is soon as I feel miserable. Yet I know my endocrinologist is concerned about me and wants to catch me before I go too hypothyroid yet he is not one to give “over 50s” T3 due to potential chances of recreating a hyperthyroid condition with possible afib and bone loss over time. Plus I have a bit of a disagreement where TSH should end up as he says 2-3 again for over 50s yet now I’ve consulted with another endocrinologist, a thyroid specialist online and even my thyroid eye doctor recently, and they all say best, regardless of age to keep TSH at 1. So how can we say that one way of addressing what is best for the patient is xyz, if there as what I am seeing, not one set standard being followed. Yes the AACE and ATA have guidelines, yet are they being followed by all endocrinologists and doctors and what about giving the patient a chance with careful monitoring to possibly try T3 or a T3/T4 combo although that is between patient and doctor as I am seeing now this is not a one size fits all type of situation.

As far as diet goes, there is a lot of information out there on other forums and for myself, I am careful what I listen to and make educated decisions on speaking with doctors and my Integrative/Functional doctor and a nurse practitioner who practices both regular and holistic type of medicine. Plus I tell all my doctors what I am doing and that they are all in sync and in agreement together. I never heard of strict guidelines on diets with hypothyroid yet I did hear what Kimberly said in regards to taking replacement hormone spaced out from the other things like calcium, iron, etc…

Best of luck to you with this and it sounds like you are going in the right direction and with your doctor(s) guidance working together of coming to the best treatment option for you….beach

Here is that link: http://jcem.endojournals.org/content/early/2012/05/15/jc.2011-3399.abstract

Opinion and suggestions based on my own researching only as I am not an MD
Methimazole 20 months starting Summer 2010; no remission achieved
RAI May 2012

[mawahit August 21, 2012 at 7:05 pm Post count: 8]

#1173735

Hi!

I’ve been on T4 medication since January of this year, post RAI and got my T3/T4/TSH levels back under control by this May. All of the sudden a couple of weeks ago I started feeling hypo again- checked my levels and it turned out that my t3 is low. My doctor reduced levothyroxine by 25 mcg and added 5 mcg Liothyronine. I took my first t3 pill today.Not everybody is able to successfully convert t4 to t3 and sometimes we do need that additional dose of t3 to help our body convert. Plus t3 is there for a reason, so why should we make our body work extra hard to convert t4 to t3, when t3 can be supplemented directly? To me combo therapy just makes more sense. I guess we’ll just have to wait and see:). Good luck to you!

[beach45 August 22, 2012 at 3:29 pm Post count: 178]

#1173736

It is interesting as I wonder sometimes if more people do need extra T3 then being detected post RAI or TT? Or recently read sometimes after 6 years on T4 alone post RAI that some patients do need added T3? Then I hear that to be careful with T3 and that most people convert T4 to T3 just fine? It gets confusing to me anymore and wonder if more research will be done to work on a more effective combo T3/T4 therapy to fit thyroid patients’ needs. I think more changes may come in time. I have no clue yet for myself as I just started T4 therapy 16 weeks post RAI as I crashed very badly to hypothyroid and kind of hoping I do not need anything extra yet I guess only time will tell! Good luck to everyone!

[adenure August 22, 2012 at 8:41 pm Post count: 491]

#1173737

Hi,

I’m 2 months post TT now and am on Synthroid (brand) only. I started at 100 mcg and was upped to 112 mcg. 2 weeks ago. I feel pretty good so far. I work out and have enough energy to take care of my boys and homeschool and do what we usually do for the most part. I’m not feeling 100% yet, but I feel pretty good. I too wondered about Naturethroid; if you take it, please let me know how it goes for you. I figure, in the end, getting our free T3 tested will be part of solving the problem. From what I understand, most people feel best with the free’s in the upper 75% range of normal. I know my free T4 is there, but haven’t had my free T3 tested. My total was just below the mid-line 6 weeks post TT. I don’t know. I guess it’s a life long journey of seeing how we feel and getting labs done. Having an endo that communicates well and works with us is important too. Well, here’s to health and energy!

[Author]

Posts