[justpete]

#1060483

Hi everyone,

I was diagnosed with Graves last Oct.

Had RAI and was put on replacement hormone last Dec.

I’ve been having a heck of a time with all this but my main question is since I’ve been on Armour I’ve had to fight with my endo to keep the dosage up.

T4 1.2 (.8-2.2)
FT3 3.9 (2.8-5.2)
TSH <0.015 (.3-5)

I keep saying my T3&FT4 are in range but he keeps insisting on the TSH being too low.

I’m on 90mg (1.5 grain) reduced it to 75mg and within 3 days my face broke out, (I’m 42) got dandruff, my brain fog got out of hand, super tired, puffy dry eyes, etc…

My question is am I crazy looking at my T’s only?

I have an appointment next month at the at the Mayo Clinic with the top Thyroid doc there but I’d like some advice before.

Thanks.

[Kimberly]

#1182883

Hello – Hopefully, the doc from Mayo will be able to shed some further light, but here is a recent thread that looks at TSH vs. T3/T4:

(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://gdatf.org/forum/topic/44029/

Here are a couple of other thoughts…

Has your TSH ever been in the “normal” range? TSH can take quite some time to rebound, even after hyperthyroidism is treated. If it’s always been suppressed, then it might *not* be the best benchmark for your dosing.

Have you tried a T4-only product – Synthroid, Tirosint, etc.? We hear mixed reviews from Graves’ patients who use T3/T4 combination therapy. Although some feel that combination therapy improved their quality of life, others feel that it brought back their old hypER symptoms, and chose to go back to T4-only therapy.

Wishing you all the best!

[justpete]

#1182884

Thanks Kimberly.

As for T4 only I was on Synthroid but had an allergic reaction to the filler Acacia in it. Switched to Mylan generic levothyroxine and had stomach problems. Went to Tirosint and I still had stomach problems. Have had no stomach issues on Armour. Been on since April.

Kinda wonder if my body doesn’t like the synthetic T4 because Tirosint has nothing in it, and the capsules are made of the same thing as my omega3 supplements that don’t bother me. Anyhow…

My TSH was normal once @ .65 while on 100mcg Tirosint but my FT3 was really low and the stomach issues. Before I went on replacement my TSH went up to 14.

I’ve been having a really rough time with all this. Have had debilitating symptoms that my endo says aren’t thyroid related. Some are and some aren’t to me.

But what I do know is when I go lower than 90mg on Armour I get dandruff, acne, dry skin and severe brain fog. All these seem hypo to me so I keep going back to the 90mg. I’m sure it’s pissing him off.

I read a couple places that TSH will be suppressed on Armour. Thoughts?

[Kimberly]

#1182885

Hello – I haven’t seen a lot of good research on Armour and TSH, but this piece from the Cleveland Clinic notes that higher doses of Armour can lead to a profile of high T3 and low T4 and TSH:

(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://www.ccjm.org/content/77/11/803.full

[justpete]

#1182886

Thank you again.

Is anyone here on Armour and doing well with a “normal” TSH?

[snelsen]

#1182887

Hi, I am glad you are getting a second opinion. I am very glad you found an endo who is familiar with Graves’. So many of them are much more familiar with diabetes.

What IS your allergic reaction the acacia in Synthroid? Would you be willing to try it again? Seems you have done a lot of thinking and research about all of this. I am so sorry you are having these issues.

My endo at the Univ. of Washington in Seattle said that he’ll prescribe T3 and T4 if the patient really wants to try it. BUT he also said that to dose properly the T3 needs to be taken more than once a day. I don’t recall if it were twice or three times. This is because of its’ short half life. The reason I am saying this, is because this is an excellent question when you visit the endo at Mayo.

You have been on four different thyroid supplements since your RAI in December, so I encourage you to also discuss this with the new endo. I did not have RAI, but my understanding is that it takes quite a while (as opposed to a thyroidectomy) for the thyroid gland to “die.” Another thing to discuss is the possibility that the RAI dose was not enough?

It also occurred to me to wonder how long you wait before you get your labs after a dose or med change? It takes a long time for the lab to reflect the true story. And of course how you feel is paramount. Generally, my endo says 2-3 months, not before.

Your symptoms ARE kind of weird, for some really do not reflect a relationship with thyroid issues at all. Except for the brain fog, and be ready to describe exactly what you mean by that on your visit. I know you don’t want to waste this visit to Mayo. So be sure to have your records, and a chronological list of dos changes, when you had labs, and associated symptoms.

again, I sure am sorry you are not bak to your “old self,” and I hope you get there really fast. Also, our bodies are complicated, so I think if you have any other issues going on that you know of, be sure to report them, too.
Shirley

[justpete]

#1182888

Thank you Shirley.

snelsen wrote:

What IS your allergic reaction the acacia in Synthroid? Would you be willing to try it again?

Within 5-10 minutes of taking it I would get very congested with a runny nose and swollen eyes. I had to do a lot of searching to figure out it was the acacia in it. Once I switched to the other formulas that didn’t have Acacia as a filler these symptoms never occurred again, but I would have bad stomach pains or a tightening of my stomach on the all synthetic T4 meds. Including Synthroid.

snelsen wrote:

It also occurred to me to wonder how long you wait before you get your labs after a dose or med change? It takes a long time for the lab to reflect the true story. And of course how you feel is paramount. Generally, my endo says 2-3 months, not before.

That’s another issue with my current endo. TSH is off and I feel crappy so med change every 4-6 weeks. I keep trying to stay on the 90mg Armour because it’s the least bad I feel.

My Free T’s are in low normal range so I’m not worried about being hyper even though my TSH is nonexistent.

He keeps trying to lower my dose and within a week or 2 I can barely think. So… I go back up. Hopefully the endo at the Mayo will have some more info at the end of the month.

I would still like to hear from anyone on Armour that is doing well with a “normal” TSH.

Thanks.

[miltomeal]

#1182889

Good day,

I am on Armour and doing well. My TSH is not in the normal range most of the time. i noticed recently that the time when you take Armour makes a huge difference. I used to take Armour (165mg) around 5:30am and would feel over medicated when i was getting ready to go to work and for a couple of hours at work.

Recently, i changed the time i take Armour to 2:00am and now sleep off the over medicated time and recently had a blood test at 8am that show my blood work to be as close to what i want at this time – FT4 is a little low, FT3 is toward the top and TSH is right where is want it to be. I feel excellent going to work now.

Timing is huge with armour. My TSH will change drastically during the day for me on armour from being non existent (closer to when i take Armour) to in range to higher than i want because it has been a longer time since i took my meds.

JustPete – You know you body the best, advocate for what you want from your doc and do not let them push you to something that you are not sure of or need more time for yourself.

best wishes!

[beach45]

#1182890

Hello justpete,

My experience with 1-1/2 grains of both Armour and Nature Thyroid, two separate times it made my TPO antibodies rise; I felt pretty good as far as energy levels yet my one doctor advised me to get off of it due to the antibody issues; some said well if you raise up high enough that issue should not occur. I hear from people on natural thyroid hormone such as Armour the TSH and T4 are suppressed. Sometimes my eyes were very itchy on Armour and I had some stomach distress from time to time as others told me similar; and was that a filler issue?. Yet I hear of many who have done really well on Armour thyroid; I hear of many post RAI or TT who do really well on Synthroid too! Personal decision and working with your doctor… I’m still trying to find the best thyroid hormone and dosage for me and if I cannot be on NDTs then I will continue being on a compounded T4/T3 medication in an acidophilus coating which has been working best for me for over a year now; dosed two times a day; still not completely there yet the antibodies are perfect now. My levels are getting better, still low TSH yet in range now…I hate to say I felt like I was dying on T4 only medication Synthroid or Levothyroxine (generic) and my FT3 levels stayed very low with a higher FT4 level; I know where I feel best as far as FT3 level goes as I charted my levels in an excel spreadsheet now at least 3-1/2 years on my Graves journey; I never had any hyperthyroid feelings with higher T3 medication thus far in fact felt calmer; yet that is me and any T3 to me a person has to move ahead with caution in my opinion and have a doctor who knows what they are doing with it whether it be adding in T3 like Cytomel or Liothyronine like I take or in NDTs; two of my four endocrinologists gave me warning on Armour saying it is not a very stable dosage of T3 to T4 and hard to regulate in a patient; I know some will dispute me on that and heck I know of many who do well on Armour thyroid. I kind of wish I did! Also too I heard that TSH can fluctuate during the day; the doctors I work with now go more with me by FT3 and FT4 levels and symptoms; I think I’m almost there with my compound; my TSH is low yet I still have hypothyroid symptoms. I wish you best of luck with this as I found for myself too trial and error and most importantly working with a very good and knowledgeable doctor who will partner with you on this and know how to guide you properly so you don’t go hyperthyroid and yes go by lab values yet also symptoms too in my opinion!

[Author]

Posts