Doctor is stumped.....

[Hypointx]

Friends I need some help. I am frustrated and my Doctor is also confused. I have been fortunate to have a naturopath who will try whatever I want and work with me on different vitamins/supplements etc. but we are at a loss. I started a comounded treatment of T/4 and T/3 in August of last year, for the first three months each time we drew my labs my levels went up, then without reason seemingly in November they started to drop in spite of increasing my medication each time to continue to inch the levels up toward the goal of 50% range of T4 and 75%-80% range of T3, they started dropping. Here is the history (newest to oldest):

Lab Date: 6/11/2014
Ferritin: 13 (10-220)
Free T4: 0.96 (.73 – 1.95)
Free T3: 2.8 (2.3 – 4.2)
Vitamin D, 25 OH: 88
Optimal: (30-100)
Medication at time of blood draw: 200 mg of progesterone, 95/55 T4/T3 compound
Iron cream compounded

Lab Date: 4/28/2014
Ferritin: 26 (10-220)
Free T4: 0.94 (.73 - 1.95)
Free T3: 3.1 (2.3 – 4.2)
Vitamin D, 25 OH: 68
Optimal (30-100)
TSH <0.1 (0.5 – 4.7)
Medication at time of blood draw: 200 mg of progesterone, 95/55 T4/T3 compound

Lab Date: 1/27/2014
Free T4: 0.96 (.73 – 1.95)
Free T3: 3.3 (2.3 – 4.2)
TSH: <0.1 (0.5 – 4.7)
Medication at time of blood draw: 85/50 T4/T3 compound

Lab Date: 11/18/2013
Free T4: 1.25 (0.73 – 1.95)
Free T3: 3.8 (2.3 – 4.2)
TSH: <0.1 (0.5 – 4.7)
Medication at time of blood draw: 75/45 T4/T3 compound

In addition I take daily selenium, B12, D3, Omega 3's, Seriphos for adrenal issues (over production of cortisol) and am also doing a yeast cleanse for candida overgrowth. I am also on a gluten free diet.

WHY are my levels dropping? I started an iron cream that is supposed to work great and have been on it for a month, yet my ferritin dropped from 26 to 13 from May to today.

Please help, my doctor doesn't know where to go from here and neither do I.....thank you in advance.

[Barb135]

You're the only that knows exactly how you feel, but, once again, don't forget that it's not unusual for symptoms to worsen or for new ones to appear when adjusting med/dosages.  Sometimes you just have to ride them out, but again, that depends on how bad they are.  I had symptoms that appeared and didn't go away for weeks or months.  For me, 2 days would not be a long enough trial, but then again, I don't know exactly how you feel and I have a very high tolerance for things like that.

Anxiety also causes a lot of those feelings, even when you don't think you're feeling anxious.

Again - you are the only one who knows how you feel... any time you are in distress you must do what your body tells you.

Follow instructions on the bottle for the vitamins/minerals.  I usually don't take mine with food; I take them before bed, as I've taken my last thyroid med at lunch time, so I know I have good separation.

[Hypointx]

Hi Barb- well I am on day 2 of 1 1/2 grain and I am not sure it is related or not but both afternoons I have had this shortness of breath or pressure on my chest, like I can't take  deep enough breath? Never had it before...
Also, last two days I  gotten a stomach ache around 3 PM with bad bloating/gas like pains that don't go away all night. I remember way back when I started on Synthroid over a year ago, the exact same thing happened. Do you think this is all related? How long should I give it to see if it goes away?
My doctor agreed that I needed to change and was supportive of starting on 1 1/2 grain, she said to try it for a few days, see how I sleep (I have previously gotten insomnia when we tried different medication) and to see if the chest pressure continued, if so she wanted me to drop down to 1 grain for a week to 10 days and then go back up.
I feel like total crap right now, I hate this stupid disease.
One last thing...all the supplements, iron, magnesium, selenium...take with food right? I know away from the thyroid meds....

[Barb135]

How did it go?

[Hypointx]

I bumped to 1 1/2 today... Will stay here for 5-7 days or so see how I feel and then bump again to 2 grains. Thank you for all your advice. I will keep you posted!

[Barb135]

Don't forget that anxiety can produce those jitters, as well.  Yes, slow and steady is best, but you don't want to set yourself back so far that it takes extra long just to get back where you are now.  If nothing else, I'd think you should be at that 2 grains within days, not weeks.

You've been at the 1 grain for a couple days; might be time for a bump... you don't have to do an entire grain...

[Hypointx]

Hey what can I say Barb...I am SLOW!! I think I really did feel jittery...will pay close attention over the next  few days. I have a call with my doctor, she wants me to increase to 2 grains immediately....but am nervous to do so. I know you also told me slow and steady was best....

[Barb135]

"My only concern is that maybe due to the slow release I wasn't absorbing as much as I do via the grains? So the actual amount of T4/T3 I was getting is actually a lot less than the 95/55?"

That's what I've been trying to tell you since the beginning of May -- there's something about the SR that doesn't let you absorb the full amount over the course of the day. I'm wondering if it has to do with the fillers/binders that make it SR.

Did you really feel jittery or just think you "should" feel jittery, or were you just nervous about taking the med and that's what made you jittery?  There's a big difference.

Don't forget that when changing med/dosage symptoms often worsen or new ones show up...  ride them out for a while.

[Hypointx]

I noticed yesterday feeling jittery yesterday after just 1/2 grain, but nothing today.
Maybe I will try the 1 1/2 tomorrow, 1 grain AM 1/2 PM and make sure it isn't too much. My only concern is that maybe due to the slow release I wasn't absorbing as much as I do via the grains? So the actual amount of T4/T3 I was getting is actually a lot less than the 95/55?

[Barb135]

Just pointing out what you're getting in 1 grain (38/9) vs what you'd get in 2 grains (76/18) vs the compounded SR (95/55).

Did you feel anything when you took your 1/2 grain tablets today?

[Hypointx]

So you think I should increase it to 2 grains manana? Ugh, this is SO hard!!!

[Barb135]

I don't think you can go by anyone's recommendation for a starting dose, because you aren't just starting out, but if I were going to use anyone's recommendation, I'd use Westhroid's, not the one you mentioned; you've been on a relatively high dosage for a while now.  Just looking at your low results bears out that your negative response isn't from too high a dose.

I grain of Westhroid has only 38 mcg of T4 and 9 mcg of T3, so your doctor is right - you will definitely be backing up, with only 1/3 the T4 and 1/6 of T3.  I'm all for "low and slow" but that  might be overkill.  

2 grains of Westhroid would have 76 mcg T4 and 18 mcg T3; still considerably less T3 than the compounded, but if you absorb it, it might be enough (or close to it)

I do give your doctor credit for acknowledging that something has to change, because you can't maintain the status quo, which isn't working.

[Hypointx]

Thank you Barb, I wrote to my doctor, explained my situation, and this was her response after I told her I was switching to Westhroid 1 grain, 1/2 AM and 1/2 PM (following the Stop the Thyroid Madness protocol).
"Generally, starting out at 2 grains if you weren't on thyroid already would be too big of a jump, but we were trying to move to a slightly higher dose equivalent from what you were on, so I don't attribute your negative reaction to being on too high of a starting Westhroid dose.  If we went back to a 1/2 grain of Westhroid we'd be dropping your overall thyroid dose by quite a bit.  I would caution against trying this but you are right, something has to change because it isn't working as is."
I don't agree with her and was just curious of your thoughts? In the meantime she also had this to say about my adrenals:
"Your cortisol levels are elevated for morning and noon.. and within normal range afternoon and evening.  The seriphos is one of the best things I've found for lowering cortisol.  Your DHEA levels were within normal limits.  The moducare has been found to help normalize adrenal hormones, that's why I felt you could supbstitute it for the seriphos." So at least we know that is being addressed.

[Barb135]

I'm sorry if I seem to be wishy washy, but I can get into a lot of trouble if I suggest exact meds/dosages, so I have be very careful about exact dosages of anything... You'll have to read the bottle of iron and see what they recommend.  I'd suggest that you start out with the lowest possible dosage (or maybe even less than suggested) to see how you get along, then increase as your body adjusts, if needed.  I don't take iron, because my ferritin was extremely high, indicating that I have too, either too much iron or inflammation (possibly both).  I take between 200-400 mg magnesium daily.  Again, I suggest starting off on the low end and increasing, but don't go over recommended dosage.  If a little is good, more is not always better!!  Always proceed with caution.

[Hypointx]

Barb- yes I tried the non release compound that is what I had a terrible reaction to I had a migraine nearly every day. I think because she kept the dose the same so instead of a slow release I got all of it at once... It wasn't pretty. I started a 1/2 grain of Westhroid this AM.... Will keep you posted! Thanks for all of your guidance. I'm going to order some of the Solgar Gentle Iron.... How much should I take? Also I know I keep reading about magnesium. But how much and when?

[Barb135]

Has the compound you've been on, always been the slow release formula?  Some members have been on compounded thyroid hormone that was not slow release and did okay... there's something in the slow release aspect that doesn't seem to work well.  

If you want to be on a compounded medication, just try one that's not slow release and see what happens.  I, personally, would prefer a desiccated over a compound, but that's me.

[Hypointx]

Yes, first month on the iron cream...was on iron pills before that and my levels just stayed the same.

[Hypointx]

Barb- The headaches were actually with the non-release compound of 95/55 which I tried around February, at that time the headaches, bloating and crying non stop were so bad we switched to naturethroid. She started me on 2 grains and then I also was taking 7.5 mcg of T3 in the afternoon.
I was only that only a week or so as I recall which is when after looking at my labs and my encouragement we added the progesterone. The idea being I wasn't having any major negative side affects from the gradual release compound so we went back to that thinking the progesterone might be the reason why my levels were dropping, something about the binding globulins or something like that....So I started the progesterone in February and have been on that for 3 cycles now. I agree the iron isn't doing diddly....
So you think (and I know you aren't a doctor) I should start the NDT?
I want to say thank you from me and everyone else in this community. The amount of time you give to all of us, is amazing. Thank you, thank you.

[Barb135]

This was the first month on the iron?

You've been a member since Aug of 2013 and might have been on NatureThroid at that time... Can you tell us what dosage you were on when you had the migraines?  What dosage did you start on?  How quickly did you increase?  How much was each increase?  That all comes into play, but I think 8 days might not have been enough a a chance for it to even work... and some symptoms worsen on new meds/dosages.  I think we might even have gone over this at the time.  

The iron issue is, certainly, relevant, and maybe the progesterone issue is too, but I'm not so convinced on that one.. I think your doctor is grasping for straws.. you can see that your thyroid levels are only getting worse, not better, as are your iron levels..

I also, vaguely, recall RT3 not being an issue and no, I don't think that's an issue now, either, with your FT levels the way they are.

We aren't doctors and we can't tell you what med/dosages to take; we can only make suggestions for you to discuss with your doctor.  I might suggest that you talk to your doctor about going back to the NatureThroid, but starting at a very low dosage, which will leave you hypo (shouldn't be any worse than you are) for a bit, but with desiccated, I understand that you can increase dosage every 2 weeks; therefore, you might consider starting at 30 mg (1/2 gr) for 2 weeks, increase to 60 mg - split into 2 doses/day for 2  weeks, then increase to 2 grains, split into 2 doses/day - taking 1 grain in the morning and 1 grain the afternoon.  Once you get beyond the 30 mg/day, splitting the dosage into 2/day should eliminate the headaches.  Retest after 4-5 weeks and see where your levels are and how you feel, then readjust accordingly.  You may end up having to increase or add T4, but that remains to be seen.  Talk to your doctor about this and see what she thinks...

Do find a different source of iron.

[Hypointx]

Any chance my RT3 is sucking up the medication? We tested it twice back in August and then November, I don't recall the levels but I know they were fine and the ratio was right. Is it possible that has changed? Doctor said that once you confirm there is not an RT3 issue that it is unlikely that would change?
Also I have both Westhroid and Naturethroid....(long story involving pharmacy) which one should I start on and how much?

[Hypointx]

Barb- it was the first month on the iron, but I just finished my 3rd cycle of the progesterone....
I think everyone is right time for the Naturethroid, which I have a whole month's supply of. I am just so nervous about experiencing the massive headaches I had before and the other things that come with medication changes....I did try the non-release time compound but it was horrific....migraines every day, for about 8 days. Then went to the Naturethroid, but then she thought the whole issue was around the progesterone and iron, so we went back to the compound thinking once the iron and progesterone were up, I would absorb the compound. Which obviously hasn't happened.

[Barb135]

I just realized when I went back to that other thread that your doctor had planned to wait 3 complete cycles to test both thyroid and progesterone levels.  I understood that the levels posted in that thread had just been done; what prompted them to be tested again so soon, rather than waiting the 3 planned 3 months?  Was it due to symptoms?

[Barb135]

We had a conversation about the compounded slow release T4/T3 combo, back in early May on the following thread:  

http://www.medhelp.org/posts/Thyroid-Disorders/Increasing-Medication--but-levels-going-down/show/2166962#post_10356366

This was my comment:  "It would appear to me that the reason you had so much trouble with NatureThroid was the way you were  taking it.  With 2 whole grains in the morning, you were getting 18 mcg of T3 all at once, then adding 7.5 mcg additional later in the day.  Had you taken only 1 grain in the morning (9 mcg T3) and the other grain (9 mcg T3) around noon or so; it would have leveled out over the course of the day and you might not have needed that other 7.5 mcg T3.  Additional T4 might have been in order, also.

The time release capsules release aren't meant to be split as they release continuously.  I agree that you might not actually be getting what the label says.  The other person I mentioned who had been on compounded time release med, simply went to compounded, not time release and did much better.  There seems to be something about the time release part that may not work as intended."

[goolarra]

I'd get off the slow release and get on a regular T4/T3 combo.  You're not the first person we've seen on this forum who took gobs of SR T3 and T4, and it seemed to disappear into never-never land.  You'll have to take it more than once a day, but at least you'll absorb it.  You'll also probably want to start out at a considerably lower dose since I suspect you have been absorbing very little of the SR.  Though SRs theoretically sound great, I haven't heard good things about them.  Desiccated is another option.  

Another issue, since you do have Hashi's, is that your meds increases aren't keeping up with your deteriorating thyroid.  However, my bet is on the SR as the culprit.

[Hypointx]

Oops and yes I have Hashi's, lucky me!