[mombert]

#1059930

Hello, Newbie here needing your expert advices! 51yo Female, at time of original testing and treatment, I had a high counts of both Grave’s and Hashi’s antibodies (I know, I’m a phreak) and Celiac disease. I’m fairly thyroid illiterate as far as the ‘numbers game’ goes, I just know I’m not feeling well.

It’s funny, but when my numbers were the best was the time I was the worst. I actually prayed for death, and that’s not a figure of speech. Endo wouldn’t let me do RAI, wanted me to stay the course with a drug that caused me 170 at rest pulse, incredibly high bp, resp rate of 5/min and seizures among other fun things. (why? IDK but have my own conspiracy theory on that) so I found a new doctor. It was a job convincing my new Endo that I had all sorts of issues with the meds, and finally she prescribed the RAI. I killed my thyroid second week of January, 2013.

I’ve been on Levo since the beginning of March, 100mcg.

Labs done beginning of April:
Free T4: 0.52 ng/dL ref: 046-1.31 so I fall into range.
TSH : 73.39 mInt Units/mL ref: 0.34-5.60 I’m waaay high

At that office visit, I told the Dr that I feel better than I had for the last several years. I’ve lurked around enough to want to try a T3 replacement, due to BF, swelling, tendonitis, and skin, hair and digestion. Dr. is anti-Armour (“it’s made of piiig guts!”) and anti-T3 (“sure, and cocaine will make you feel good, too”). I told her I wasn’t asking for a Schedule II drug for fun, I want a therapeutic replacement of a hormone I no longer make. She upped my Levo to 125mcg, and told me to come back in 8 weeks. After a week to 10 days on that dose, I was back in Grave’s Hell. Didn’t call the Dr, just quit taking it for 3 days, then started back in with the 100mcg. Started to feel better, at least I’m not crawling the walls and people no longer sound like the adults in Peanuts.

So, I feel better than I did, but I still feel like to cry all the time, have slow digestion, stiff/sore tendons and musculature in hands, back and legs, and major brain fog and cognitive issues, and a clogged shower drain. I called her yesterday, explained to her nurse why I wanted Cytomel, and she called back with an Rx for Cytomel, 25mcg. Tid for 10 days.

From what I understand, that’s a massive dose. I haven’t picked it up yet or called to question her on the dose. I’m afraid; I do not want hyper again, and I worry if I complain about ill effects she will give me the old ‘told ya so’ about T3 being bad/unnecessary. (If I question her, she will know I’ve been taking advice from the bad old interwebz. Because none of us should be talking and comparing notes. Cause nobody here is a doctor with a paid for medical degree and several years of practice and a fancy office and everything. She already gave me that speech. rant) Supposedly, this is one of the best endos in the state.

I can now either take as prescribed, or hoist the black flag, dose myself for symptoms and not say anything till labs come back. If they come back good, I’ll do the reveal. Actually, as far as I can tell, the numbers don’t mean much. I do need to insist on the Free T3 and maybe a cortisol lab.

Sorry for my rambling rant. So brain fogged. I’m at the point where I do not trust any doctor, especially since new one said old one didn’t have iodine uptake done properly(?!). If I’ve left something out or you need more info, I apologize; let me know what I’ve missed. What’s your best advice?
Thanks in advance,

Mombert

[Kimberly]

#1178865

Hello and welcome! I will try to write more in a couple of days, but am currently working at an event for the GDATF.

We are fellow patients here, not doctors, so we do not allow posters to give medical advice, interpret labs, or give dosing suggestions.

I would suggest, though, that any time your gut tells you that a set of instructions from your doctor are not right, *please* call the office ASAP to get clarification. Don’t be afraid to be the sqeaky wheel. Instructions can sometimes get lost in translation from physician to staff to patient, but ultimately, your doctor is the only one who should be giving you dosing advice. Your pharmacist could be a good resource as well.

Take care!

[npatterson]

#1178866

I read this last night, but waited until today to answer, hoping some others would jump on. PLEASE be careful with the Cytomel. It is not like “5 hour energy”. It leeches calcium from bones, stimulates your heart, and generally is very rough on your body. You have only been on levothyroxine for two months. If I could find an old post, I would copy and paste, but here goes:

One needs to do a very reasonably trial on T4. Give it time to get adjusted to your body.The T4 breaks down into T3. If, after months of taking it, and you still really aren’t stable, then conventional wisdom dictates that you have a bone scan, an EKG, and ideally a neuropsychological exam. That would pick up on memory issues, i.e. our famous brain fog. It is NOT a crazy test.

When you start T3, one of three things will happen (assuming you are not taking them on a random, self-prescribed schedule):

1. You will feel nothing–not better, not worse, In that case, stop taking it. The only effects are internal and negative–see above

2. You will feel more hyper than ever–in that case stop taking it! You will have no problem with the decision at that point.

3. You will feel BETTER! You will be able think more clearly, your memory will improve, and your stamina will improve. In that case, you are one of the small percentage of people who do need supplemental T3. Keep your doctor appointments, keep getting Free T3 and Free T4 tests, and keep taking it!

Please don’t become a walking, talking campaigner for T3. It is great for some folks, but is not a harmless, feel-good pill.

Talk care,

Nancy

[Harpy]

#1178867

Found this study today, indicates improved mental function, but obviously as indicated above tread with care.
http://link.springer.com/article/10.1385%2FENDO%3A18%3A2%3A129

Quote:

Abstract
It was recently demonstrated that treatment with levorotatory thyroxine (T4) plus triodotthyronine (T3) compared with treatment with T4 alone improves psychologic functioning in hypothyroid patients with thyroid cancer or autoimmune thyroiditis. In the present double-blind crossover study, we again compared the effects of combined thyroid replacement vs monotherapy on psychologic function, endocrine function, cardiovascular function, and body composition. The patients were women who were hypothyroid after thyroidectomy for Graves’ disease. The substitution of 10 µg of T3 for 50 µg of T4 caused a statistically significant decrease in free T4 concentration but no significant change in T3 or thyroid-stimulating hormone concentration. Symptoms of hypothyroidism and of hyperthyroidism tended to decrease on a standard symptom scale after combined treatment. With combined hormone replacement, mental state tended to improve on some mood scales but not on cognitive tests. We found alterations in left ventricular diastolic function but no change in body composition after the combined treatment regimen. These preliminary findings in a small group of patients with Graves’ disease are consistent with earlier findings that thyroid replacement with T4-T3 combination improves mental functioning.

[adenure]

#1178868

Hi

It sounds like 100 mcg. wasn’t enough, but 125 was too much. There is a dose right in the middle: 112 mcg. I would ask your doctor to prescribe the 112 mcg. and see how that does for you. Increasing your 100 to 125 may not seem like a lot, but very little goes a long way with thyroid replacement hormones. I was on 100 mcg. and then increased to 112 mcg. when I was slightly hypo (TSH 6.35). After 2 weeks on 112 mcg. I dropped to 0.79. So, it worked quickly & well! I can see why you might have gone hyper in symptoms after your increase. You do have to wait 6-8 weeks to see the full effect of a dose change, but I would ask to see if she could prescribe 112 and scale it back some.

As far as Cytomel… yeah, I tried it. I took 1/4 of a 5 mcg. pill and had hyper symptoms (anxiety, diarrhea, shakiness) so, I stopped it- wasn’t worth it. I read all the hype and thought maybe it would help the little bothersome symptoms, but it made things worse. The hyper symptoms didn’t start until after being on it a week, but it was NOT worth it. 25 mcg?? I wouldn’t go there. But, I’m not a doctor and certainly can’t tell you what to do. I’m sure there are people on that dose, but I wouldn’t want to start with that dose. From what I understand, if you do add T3, a doctor is supposed to lower your Synthroid as well.

I really would just try the 112 mcg. and stay away from the Cytomel. I didn’t try Cytomel until a good 8 months after I had been on just Synthroid. And, truly, I didn’t feel good until I had the right dose of Synthroid and had been on it for a good 2 months. So, for me, it took 4 months until after my surgery until I started to feel better. You have to be patient & give it time. Not easy, but it will get better. Give the Synthroid a chance. I do take brand name instead of generic as I wanted to be 100% sure it was coming from the same manufacturer with no added fillers or wiggle room on the dosing.

[Kimberly]

#1178869

Hello – A couple of other notes, now that I’m back on my regular computer…

The European Thyroid Association published a detailed protocol for T3/T4 combination therapy last year. They recommend T4-only therapy for at least six months and ensuring that the patient is compliant with dosing guidelines (taking meds consistently on an empty stomach, avoiding soy/calcium/iron within 4 hours, etc.). If the patient is still experiencing symptoms after that time, they recommend a *short* trial of synthetic T3, with a follow up evaluation to see if symptoms improve.

http://content.karger.com/ProdukteDB/produkte.asp?Aktion=ShowFulltext&ArtikelNr=339444&Ausgabe=257225&ProduktNr=255331

Also, I’m not really clear whether your doc intended to switch you over to 100% T3 – or if you were asking for a small supplement to take in addition to your Levo. This is a really important issue that you will want to clarify with your doctor.

We have been at conferences recently from the American Thyroid Association and American Association of Clinical Endocrinologists. There are numerous studies (approx. 17) that have looked at effectiveness and patient satisfaction with T4 only vs. T3/T4 combination therapy. The vast majority noted no improvement in quality of life with T3/T4 combination therapy, although a couple of more recent studies did indicate improved patient satisfaction with T3/T4 combination therapy. Here are a couple of more recent ones:

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

http://jcem.endojournals.org/content/early/2013/03/28/jc.2012-4107.abstract?related-urls=yes&legid=jcem%3Bjc.2012-4107v1

http://jcem.endojournals.org/content/94/5/1623.abstract

The second link above actually proposes a theory that patients with a specific genetic type might be predisposed to feeling better on combination therapy. Clearly, this is an area that needs more research.

Take care!

[WWWI2]

#1178870

Mombert,

I am absolutely not a doctor but from what i’m reading it has been suggested that a 4 to 1 ratio appears to be within reason.

Keep in mind that Liothyronine (cytomel) is four times more potent than levothyroxine. Levothyroxine 100 mcg daily would be equal to 25 mcg of liothyronine.

To add liothyronine to levothyroxine, the dose of levothyroxine may need to be lowered first. Someone taking levothyroxine 100 mcg daily might be changed to levothyroxine 75 mcg with liothyronine 5 mcg daily. This would be roughly the same as 95 mcg of levothyroxine, not exactly the same dose but a close approximation.

Please check this out on your own as I am not prescribing nor suggesting just offering one gauge to compare too. But based on this, 25 mcg does appear to be significantly higher than elsewhere I’ve seen. Additionally, it doesn’t appear your doctor is having you lower the levothyroxine either which I would certainly investigate as well.

I am only going based on what my doctor did and upon the addition of 5 mcg of lothyronine he lowered my levothyroxine from 100 to 75 mcg.

Cytomel addition may or may not be what helps you to feel better, but for me it has made all of the difference. I had been a human yo-yo for a while, but even when they got my levels in the optimal place, I felt no better than I had when I was hypo from too much Methimazol. Within a day or so of being on the Cytomel, color came back, my body started to respond in all kinds of ways and it has continued to. I hope you find the resolution for you, whatever it turns out to be. Good luck

npatterson – As one who does not convert T4 to T3 correctly I have to say that your response appears to be as a result of clearly never needing T3.

And I think it is unkind and in fact condesending to say “Please don’t become a walking, talking campaigner for T3. It is great for some folks, but is not a harmless, feel-good pill.” You are dismissing and minimizing a whole segment of people. We don’t have the support of the AACE or the ATA and I think it is extremely unhelpful to treat those who have benefited from the use of T3, lowering depression and significantly improving quality of life as simply “Rah Rah cheerleaders”. Unless you genuinly understand the impact for those of us in this group, between T4 alone and t3 with T4, please don’t speak as if you are an authority.

Additionally whether it’s 10% or 40% of us that deal with it, if you are in this group, it doesn’t matter what the percentage is.

http://www.eje-online.org/content/161/6/955.full In this study 49% of the patients preferred the combination treatment, and only 15% preferred levothyroxine-only treatment. I don’t know about you but that’s NOT a small percentage

Kimberly,

I didn’t see your post before I posted mine. Sorry for any redundancy.

WWWI

[beach45]

#1178871

I was not converting T4 to T3 properly a few months post RAI.

I have added some T3 and I have felt much better; I am still in an adjustment period though post RAI one year.

My current doctor had me on too high a dosage of T3 and I was reduced from 16 mcg to 10 mcg five weeks ago.

My T4 was also reduced signficantly from 125 mcg down to 80 mcg.

I can say from my experience 25 mcg of T3 is too much as I had anxiety attacks myself on it (another doctor started me too high and I should have questioned right away!); yet that is only my experience. Why now I am with my current doctor.

I do know that it is important to be careful with it due to potential increase in heart rate and bone loss. I do monitor my HR frequently. Most doctors are careful to not recreate a hyperthyroid condition. My last endocrinologist was okay with me trying T3 because he had a TT himself and knew with my low FT3 reading it could help.

My pharmacist said she has filled prescriptions of anywhere from 2.5 mcg to 50 mcg of T3; yet T4 is reduced significantly accordingly as per what others say here also.

I only go by what my experiences are. Not everyone needs it yet since I am still doing a trial on T3 for me I work very closely with my doctor, will immediately voice my concerns if I feel something is not right or I have terrible symptoms. Important to feel comfortable working with your doctor. It took me a while to find a doctor who will listen yet is also very careful with dosing. He tells me I would rather go under what you may need in T3 than over. Now that I was dropped 6 mcg I am starting to feel more hypothyroid symptoms yet I really prefer now to go as slow as possible. I do know people who had RAI a while back who take only Synthroid and do very well. I hate to say yet I felt like death on T4 alone. Yet we are all very different and have different needs.

Good luck with this moving forward.

Beach

[Author]

Posts