Thyroid Disease Forum banner
1 - 6 of 6 Posts

·
Registered
Joined
·
3 Posts
Discussion Starter · #1 ·
I was diagnosed with hypothryoid back when I was 2 years old (just turned 66). Was on Armour until 24 years old when new doctor insisted I go to thyrolar and then 2 years later was switched to synthroid by another doctor. I was on high dosage replacement meds. I finally found out 5 years ago or so that my thyroid gland is completely atrophied.
Here is the problem: I never felt well after being taken off (with protest) Armour. I have multiple symptoms of hypothyroid. Doctors constantly want to reduce my meds based on blood work, stating concerns for my heart and bones.
The biggest problem with this: I DO NOT FEEL WELL ON REDUCED DOSAGES!!! Rather than feeling better, my body begins to shut down. I am tired beyond belief. My brain cannot function. I have cramps in my legs and now my arms. I have gained weight. My heart feels stressed rather than relieved. My libido is in question. My outlook is no longer sunny. I no longer have a sense of wellness in a way I have never, ever experienced in my whole life.
The doctors want to reduce it even further!
I am on synthroid and a compounded T3 slow release and they are not working for me. I have a wonderful holistic doctor who tries to work with me but I was strongly encouraged by another primary care doc to see an endocrinologist. The endo emphatically insisted I reduce my dosage and here I am.
Does anyone know of a doctor in the NY-NJ-PA area who is cutting edge on thyroid management? I am so in need of help. I had gone back to Armour and it did not do the trick. This business of being symptomatic while blood tests contradict the need is crazy!
Thanks,
Beth
 

·
Super Moderator
Joined
·
6,620 Posts
Welcome Beth!
Sorry to hear your docs are not working with you. Many times TSH suppressed when using T3 hormone in the thyroid hormone replacement mix. Unfortunately - you need to keep looking for a doc who will support this important side effect. Have you tried a naturopath type doc? You might have more luck getting properly medicated and they would most likely be willing to put you back onto NDT. Once regulated you could try finding a doc who would be covered by insurance as most Naturopaths are not.

If it helps your cause - ask for bi annual Dexa scans to confirm you are not losing excessive amounts of bone. I run TSH as low as .008 bt with mid to 3/4 range FT-4 and FT-3 labs and don't have the issue - proven by regular Dexa scans.
 

·
Registered
Joined
·
3 Posts
Discussion Starter · #3 ·
Welcome Beth!
Sorry to hear your docs are not working with you. Many times TSH suppressed when using T3 hormone in the thyroid hormone replacement mix. Unfortunately - you need to keep looking for a doc who will support this important side effect. Have you tried a naturopath type doc? You might have more luck getting properly medicated and they would most likely be willing to put you back onto NDT. Once regulated you could try finding a doc who would be covered by insurance as most Naturopaths are not.

If it helps your cause - ask for bi annual Dexa scans to confirm you are not losing excessive amounts of bone. I run TSH as low as .008 bt with mid to 3/4 range FT-4 and FT-3 labs and don't have the issue - proven by regular Dexa scans.

Thank you for your quick, and informative reply. Yes, I do have dexa scans every two years. I am due and have my Rx for this November. Last time it did go down just a bit so both doctors are requesting I stay on lowered Synthroid until then to see if it goes down more. I also get concern for potential heart issues. However, I did go see a cardiologist for another reason last Spring and he is not showing any concern in this area.
My TSH has been as low as .005 which unnerves them. I find most endocrinologists to be cookie cutter thinkers which is why I have done my best to avoid them. My holistic/typical doctor has done an amazing job of managing all this but she still wants me to wait until November. If I told you the story of the last 40 years of managing this we would be here all day. I have never tried a naturopath so perhaps that is an option to pursue.
I also, shockingly, never knew until this past February, that hypothyroidism is an autoimmune issue. Shocking is an apt term and have since found out there are other potentially related issues I could experience based on blood work, such as RA. How I never knew this, I do not know.
Thank you for the suggestion and input. I could write a book but I am sure so many others could as well.
 

·
Registered
Joined
·
328 Posts
End stage hashimotos is pretty much the same as having no thyroid (like Lovlkn has experience with). From my research, these folks usually need both T4 and T3 medicine. Like you said before you were on Armour which is combination of these and some more. Your current routine could work OK, but just have to find the mix maybe.

What are your FT4 and FT3 tests looking like (include ranges)? Finding that right mix of T4/T3 can be tricky. And finding the right doctor can be difficult. Check out this site for finding a doctor: Patient-Recommended Thyroid Doctors (U.S.)

I've personally found endocrinologists are not great at dosing thyroid medication (usually). They seem to be better at dealing with weird cases than dealing on a daily basis with thyroid management. I'm sure there are good ones out there, just have not come across many. For dosing combination someone on the alternative side should be a bit better. But I prefer to find ones that have an MD also.
 

·
Registered
Joined
·
3 Posts
Discussion Starter · #5 ·
End stage hashimotos is pretty much the same as having no thyroid (like Lovlkn has experience with). From my research, these folks usually need both T4 and T3 medicine. Like you said before you were on Armour which is combination of these and some more. Your current routine could work OK, but just have to find the mix maybe.

What are your FT4 and FT3 tests looking like (include ranges)? Finding that right mix of T4/T3 can be tricky. And finding the right doctor can be difficult. Check out this site for finding a doctor: Patient-Recommended Thyroid Doctors (U.S.)

I've personally found endocrinologists are not great at dosing thyroid medication (usually). They seem to be better at dealing with weird cases than dealing on a daily basis with thyroid management. I'm sure there are good ones out there, just have not come across many. For dosing combination someone on the alternative side should be a bit better. But I prefer to find ones that have an MD also.
Hi and thank you for your response. I did not realize Hashimoto's is similar to no thyroid gland or a completely atrophied one such as mine (which may have been due to Hashimoto's at age 2 when my mother said I changed and stopped progressing, even regressing developmentally, and it took 3 doctors and my mother's perseverence to confirm a diagnosis).
So I am taking synthroid and a T3 supplement. My last labs back in May showed a .008 TSH (had previously been .005); 1.59 out of a 1.77 TF4 range; and a 3.7 out of 4.4 FT3. The new endocrinologist felt the TSH was dangerously low and wanted to lower my synthroid even more. Currently I take 112.mcg of synthroid and 12 mcg of liothyronine (compounded, slow release cytomel).
I know it is a process of balancing the two but as all these years have proven over and over again, I feel totally lousy if I am not on 137 mcg of synthroid and 12 of liothyronine. When I was on Armour from the ages of 2-24 I took 3 grams per day and felt good every single day of my life.
I have been told Armour is not good as you get older so not sure going back on it is a good idea. Do you know anything about that?
Thanks again. I am looking at the doctor list you sent. It is what I was also hoping someone would share so thanks.
 

·
Registered
Joined
·
328 Posts
Nothing wrong with Armour. Endocrinologists don't like it, so you will need to find a alternative medicine provider to prescribe it. There have been some issues with NDT (Natural Desiccated Thyroid) brands recently. Armour is a type of NDT and actually seems to be the best brand from what I have heard over the past few years. So if you do end up trying NDT again, suggest getting brand name Armour. You will need to ensure they give you the brand name because the generic is one of the types that has issues. My only concern with NDT is that there are sometimes issues with supply and the recent issues with quality. And most conventional doctors don't like it and think it's old medicine. I think they are concerned with the ratio of T3 in it. Either way, it can work for people and in many studies people prefer NDT over everything else. However, the nice thing about synthetic T4 and T3 is you can control the ratio of each, which can be useful depending on the situation.

When taking T4 and T3 TSH can be a bit tricky to use. And I do think there are situations where the TSH will be suppressed like you have but still be OK (assuming FT4 and FT3 are in range). That being said, it's best to find an experienced doctor who is more used to dosing combination T4 and T3 medication. If they are not testing TSH, FT4 and FT3, I would suggest they are not experienced with combination dosing. If they are not taking into account your symptoms that is an issue as well. But that being said, I think people certainly need to be careful not to over do T3. Looking at your labs they seem pretty reasonable. Mid to 3/4th range on the FT4 and FT3 are usually what people do well with.

So I would try to find a doctor that is more experienced with dosing combination. Because endocrinologists have a long history of TSH being the primary test, they will not like seeing a suppressed TSH. However, they don't have enough experience with combination therapy (T4 and T3). They are only now dipping their feet into those waters. And many of them are resistant to it despite a large percentage of people (I'd say 20%) having issues with normal T4 only treatment. Just be careful on the functional doctor side. There is a large variance of quality on that side of things too. That website above for finding a doctor may help. I feel like going to a doctor in a big city with good reviews is helpful. If the doctor is open to NDT that would a great sign. Potentially you can ask pharmacies who prescribes NDT to find a doctor that way. Not saying you need to switch (try to get Armour if you do), but that would be a sign of a doctor open to treating folks in a situation like you.

A good quality endocrinologist should understand that in end stage hashimotos, combination therapy is often helpful. It sounds like you certainly have that scenario. Your thyroid is not helping out at all just like if you didn't have one. I would highly suggest not going back ever to T4 only. Just find a good doctor if it takes you going through quite a few.
 
1 - 6 of 6 Posts
Top