Combination therapy and beating a dead horse.

[dreeftwppd]

Hey Folks,

I need some more input if you are willing. I've now been hypo for about 3-4 years. I started of sub-clinical (tsh between 5-10) and there was debate if I needed therapy or not. Regardless of that,  I had what seemed to be hypo symptoms.

The main ones for me were, and continue to be fatigue, joint and muscle weakness. I am 36 m. I used to be able to run a marathon after a heavy night of drinking no problems, now I can barely function. I don't know if my symptoms have gotten worse of I am just more aware of my disposition.

I think I have found a good thyroid doctor and I feel like there is trust there.
When my most recent blood work came back, MY tsh was 4 and I didn't even bother asking about the t4. She asked if I had been talking my meds regularly to which I said not really, I had given up being consistent because my symptoms have not really eased away. I've had a HORRID time being stable, and never really have been stable, even when taking meds religiously, I see-saw between hypo and hyper. I've had both my t4-t3 ranges close to the upper limit and not sure I really felt any better.. I know I have had moments when it felt great, but by they I mean moments, like a day when everything aligned just perfect, but I don't know what my numbers were.

I love to work out, that is my happy pill, but these days I can't do it without pulling a muslce, tearning a meniscus and basically just feeling like mr.glass.
More over my gf is extremely outgoing and active, and I like doing all these things but it always feels like to her that I don't like doing these things. The best way I can summarize to her how I feel is that imagine you are out of shape completely and you decide to go for a run, now in about 3mins of running your body just wants you to to stop running and that's all you can think of, stop running. That's how I basically feel, can I just stop running, except for me it might be that we are at dinner or going to a pub or hanging out with friends. I just want stop.

I guess this has turned out to be a long winded rant and basically what I am saying is that I just don't know anymore.
I like the idea of being on NDT but there is a bunch of debate on weather this is effective and have read reports that over-medication can be a bad thing too which is why most docs stay away from combination meds, and that moreover  it's never been proven that combination is more effective than mono therapy.
Even though I just read a study where (if I read correctly) rats reached a truer state of euthyroidism on combination than mono (t4 only.)
So for me it's not a question of natural vs synthetic. I believe they make synthetic to be ( I may be mistaken) close to the same thing the body makes, and in my case I have had t4-t3 above mid normal but I don't think I have ever been stable or have had significant and consistent improvement in my symptoms.

I've been on Armour since last Thursday, and I maybe having a time adjusting. I've had rapid heartbeats and have been up all night last night just wired so now am trying half and half, though with the 30mg grain it's hard to break. And yeah chewing it tastes like burnt flesh.. yuck. I think, after I take it in the morning I do feel good, almost like a high. But then again it maybe just my concept of the t3. I am hoping I settle into this.


Here are my more recent TSH Ranges:
june 2012
T4 Free 1.36 ng/dL 0.76-1.46
T3 Free 4.43 pg/mL 2.77-5.27
TSH 0.371 mIU/L 0.358-3.74

aug 2012
T4 Free 1.58 (H) ng/dL 0.76-1.46
TSH 0.056 (L) mIU/L 0.358-3.74


oct 2012
T4 Free 1.28 ng/dL 0.76-1.46
TSH 2.230 mIU/L 0.358-3.74

mar 2013
T4 Free 1.51 (H) ng/dL 0.76-1.46
TSH 1.720 mIU/L 0.358-3.74


I didn't bother asking for t3 ( I know it's a mantra here) after june since, it looks like I convert ok, even though it seems I need to be on the lower end of tsh to get proper amounts of  t4.. so maybe I do need some t3 therapy. Maybe when feel great, I can run in and get blood work so I know what my levels were that day? I do know the theory is that most people feel good when tsh is about 1 and t4.3 are above mid range, but for people like me who are extremely sensitive to meds and constantly fluctuate am I asking for too much here?


On a side note and I did see a post about hypo and celiac. Incidentaly I have stopped wheat. I never felt good on it and would get the WORST heartburn after taking wheat and I do believe that it can be a cause of may illnesses especially if you take into account that a lot of is now genetically altered. And recently seen a show about how there is a protein in it that our bodies can't digest blah blah blah. Anyways I do thinK I feel better without wheat.
My first app with a functional medicine doc is in oct. IT will cost 600. He don't take insurance but I heard that a lot of docs send their patients to him when they can't figure out what's run. He apparently ran the NASA medical team for 10years etc and they do tests that people never heard of. Hopefully something will come of this.

Any feedback advice support is greatly appreciated.

[dreeftwppd]

yeah, I found a couple, just don't knwo what to do. There is just so much info and not of it in agreeable to each other.

i don't know if I should stick it out with armour.. I feel like I am back to the beggining with this.

[LazyMoose]

Drs that "do" Adrenal Fatigue are usually turned down from insurance companies.

Insurance calls adrenal treatment "experimental" medical treatment in the US.

These Drs are out there though. I finally found one, 2 hr drive though.

[dreeftwppd]

Thanks LM. I tried once to look into Adrenal Fatigue but it seems like doc's don't even consider that a condition... sigh.

It is good to know that it's just part of a transition.

I worry sometimes that I am doing damage to my heart when it's like this you know, fast slow fast slow..

[LazyMoose]

"First couple days on armour and it was like I was high.. I wanted to run a marathon and run through walls."

This was a direct result of your body getting more T3 that it had before. Energy, heart palps, sweating, then cold ect. This happens to some people when starting a med with T3. I know this to be a fact, from great personal experience in this area. As time goes on your body should adjust to this, more than a week.

Good thing is most people eventually feel better with T3 higher than T4 once they get used to it. It also helps against reverse T3 from taking place.

Being very sensitive to thyroid med with T3 can also be a sigh of adrenal fatigue. If adrenal adaptogens (holy basil, taurine, ashwagonda to name some) make you feel better, than this is part of whats going on. Plus when your thyroid is low in the tank, the adrenals work twice as hard and make you feel worse.

[dreeftwppd]

ummmmm. so I was on 88mcg of Synthroid and now on 30mg of Armour.

I am thinking I that i need to up my dose? First couple days on armour and it was like I was high.. I wanted to run a marathon and run through walls.
Now last couple days I feel alittle more hypo, tired draaaaagin..
is this up down normal when switching meds... I feel like I almost have the flu.

[Barb135]

:-)

[dreeftwppd]

ok awesome! thank you all for the time and effort.

[Barb135]

"k, now I gotcha.. so I am screwed...? "  No, Red is simply pointing out some conditions that COULD be indicated by your AST, but are highly unlikely.  Your AST is actually in range, so unlikely to be a problem.  Proteinuria is when there is too much protein in the urine and most common with diabetics. If you were losing protein in your urine, it's likely that protein levels would be low; yours is not. Haematuria is blood in the urine.  Both of these conditions would require urine tests.

Once your thyroid levels are back to a good place and you get your vitamin D levels and B12 up where they need to be, you should do much better.

[Red_Star]

You would need other evidence of kidney disease with a eGFR above 60. Might be nothing to worry about but you did mention kidney pain so worth getting that checked out.

[dreeftwppd]

k, now I gotcha.. so I am screwed...?

[Red_Star]

My comment is a bit disjointed. My brain isn't functioning too well. Meh lol.

This is your blood work i was referring to:

Estimated Glomerular Filtration Rate>60 mL/min/1.73 m2 >=61

[dreeftwppd]

but that's not in my blood work, correct?

[Red_Star]

Yes i forgot to mention your kidney function test. Geez my brain. eGFR is 61% kidney function. I had uremia due kidney failure so my kidney's don't like me much lol. Kidney function can slow down due to slower metabolism. My lab states an eGFR over 90 is normal.

the Renal Association - Normal GFR...

"GFR over 90mls/min/1.73m2 is normal unless there is other evidence of kidney disease, in which case CKD is stage 1. Other evidence of kidney disease may include:

Proteinuria or haematuria
A genetic diagnosis of kidney disease (e.g. known to be have a disease such as polycystic kidney disease)
Evidence of structurally abnormal kidneys (e.g. reflux nephropathy, renal dysgenesis).

If any of these are present, CKD stage is 1. More about Stages 1 CKD.

If GFR is 60-90 mls/min/1.73m2, the definition of CKD also requires one of the above features to be present, in which case CKD stage is 2. Because eGFR estimation is not very accurate at near-normal levels of kidney function, many labs only report eGFR >60, in which case it is not possible to tell apart stages 1 and 2 CKD."

[dreeftwppd]

RS - that prolly explains why I suffer from gout alot.. my left kidney hurts alot.
But is it true that alot of peole with Hypo also have kindey issues?

[dreeftwppd]

Hey Flyingfool, thanks for your time.

I have only been on Armour for 5days. IE. I have never had t3 before, have only ever done synthetic for 3+ years and while it's been an improvement from where I was, I don't know that i've really gained. In other words, I've checked my frees before and been above mid and recall not feeling great.

So this is my first trial at t4-t3 combo and I guess I was already feeling an energy boost which is nice compared to waiting 4 weeks for your system to build up.

[Red_Star]

I meant AST is borderline. Brainfog. :)

"AST: Low levels could indicate uremia, Vitamin B6 deficiency or drug therapy.

ALT: Low levels are generally not a concern and are not monitored."

Kinda awkward huh. I don't have that issue. Awkward and me parted company a long time ago. Ahh the joys of misdiagnosis.  I'll take some of that energy. Thanks~! :)

[flyingfool]

To me you sound like you are having HYPER symptoms. Which could mean you are over medicated.

My recommendation would be for you to call your Dr and tell them what is going on and how you are feeling.  The Dr may then recommend that you cut your dosage level.

As stated above it could be that you got too much too soon. Some people are very sensitive and need to make very small incremental changes.  So it is possible that you could still end up at the dosage you are now on. But you have to work up to it slower.  Or you could simply be overmedicated.

Being "wired" full of energy and racing or rapid heartbeats are all consistent with being Hyper symptoms.

because you have not had consistent blood labs showing Free T4 adn Free T3 levels it makes all this a guessing game.  you are having adjustments made essentially in the dark and somewhat a semi-educated guessing game.

I think you are getting too much T3.  But as you claim you don't feel well with cutting back your Armour.  The problem I'm GUESSING is that you will need a dosage to make you feel well that cannot be attained by Armour alone.  I think you will have to have a combination of Armour and also a synthetic or either T3 or T4. But I suspect that it would more likely be a small dose of Armour as well as some synthetic T4.  

Another option would be to start with BOTH synthetic T4 and synthetic T3.  In this way as stated above you can adjust each component individually.  I think you have proven to yourself that raising or lowering your Armour has not resulted in you feeling well.  So this to me clearly supports the idea that you will need some sort of combination and not just Armour alone.

These are only my opinions.

[dreeftwppd]

is it a good sign that I have all this energy?
I haven't really slept for two days.. but I feel like I could run a marathon, I wanted to run around the neighborhood at 3am or run through a wall.. that can't be a good thing.

[flyingfool]

You really need to post your blood labs. I would recommend you start a new thread and post how your feel and your history as well as your last couple recent blood test results INCLUDING the refrence ranges.

You have a few possibilities.  Clearly you seem Hypo based upon your descriptions.  I would be willing to bet that your Dr is using TSH only or perhaps only Free T4.

The problem is that if your body is not converting properly. That is it is not converting enough of the T4 into T3 which is what your body uses. WHich can only be known if you are are being tested for Free T3.  Or another possibility is that in combination with the low conversion, your body is sensing very high levels of T4 and is converting the "excess" T4 into Reverse T3 (RT3).  Reverse T3 is inert and many say that the RT3 "plugs up" the cellular receptors and doesn't allow for the active Free T3 hormone molecules in to do the work.

Another possibility is how you take your medication.  that is with T4 only and if not separated from meals and especially supplements like Calcium your absorption of the thyroid medicine in the gut could be significantly reduced and thus the medicine is not even getting into your blood stream.

Bottom line is that you need to be tested EVERY time for BOTH the Free T4 and also the Free T3.  Many Dr's are reluctant to test for Free T3 as they naively believe that everperson has perfect convertion.  Which is definately NOT the case at all!

Many people find that if they are symptomatic while still remaining in the so called "normal" or "reference" range, they need to be WELL up into the range.

In fact the rule of thumb is that they feel well when BOTH of the following conditions are met:

1) Free T4 (FT4) is in the MIDDLE of the range (50%) or slightly higher.

and- that means in addition to

2) Free T3 (FT3) to be in the UPPER 1/3 (66.7%) of the range.

Keep in mind this is a rule of thumb and every person is unique and feel well at different levels.  However the rule of thumb has proven substaintially more accurate than the published reference ranges.  So do NOT accept that as long as you area "somewhere" within the range you are "normal" or fine.  If you are still suffering from symptoms then you are NOT well or "fine".

Please also check out the information at the; National Academy of hypothyroidism : http://nahypothyroidism.org/

Please in particular look  under the tabs on the left side about "thyroid hormone transport" and "conditions associated with abnomrmal thyroid transport".  They discuss weight and diet being one of the causes for the need to have blood levels higher than would be anticipated in order to feel well.

I suspect you will find that you will need a source of T3 medicine. But that is almost impossible to tell without having FT3 levels tested.

if your Dr ONLY uses TSH, then I'd recommend highly that you RUN, don't walk to find a new Dr.  TSH is completely and totally inadequate to be used for dosing ajustments.  it isn't really that great of screening tool, let alone used for optimizing dosages.  Any Dr only using TSH will almost assuredly keep you feeling like crap.

[dreeftwppd]

thanks Barb, thanks Red_Star.

WIll do, it's always kinda awkward asking docs or rather telling them how to do their jobs.. oh well. I might just start taking b's anyways or maybe I hsould get tested first to see. I take a daily vit then all lotso f stuff for joints and vit d.

[Red_Star]

No B12 on your labwork.  ALT is borderline. Could be nothing to worry about but low ALT is due to low vitamin B6 (pyridoxine).  My homocysteine started to rise again due to stomach acid depletion (over medicating on thyroxine) and i can't blame B12 levels so hello low folate and vitamin B6!  I should of figured it out when the middle of my tongue started to show a large crack down the middle. That was one of my symptoms of severe vitamin B12 deficiency only the crack was like a mile wide. :)

[Barb135]

No, none of the blood work posted on this thread, shows a vitamin B12.

Make sure you specify FREE T3 and FREE T4, otherwise you might get totals, which are obsolete and of little value.

[Red_Star]

Excerpt from the book "Running On Empty" by Robyn Koumourou....

"There are some individuals who find that they keep increasing their thyroxine dose every few months and only have temporary relief of symptoms. Some patients have ended up with taking 200 mcg to 400 mcg per day and still suffer with the symptoms of hypothyroidism.  In some cases the symptoms become even worse when they were initially diagnosed, and they wonder why they have not improved on such a large dose of hormone replacement.  

It is more than likely that these patients have a problem at a cellular level, where cellular metabolism has not improved, regardless of normal amounts of T4 and T3 in the bloodstream. Sometimes blood test results will indicate that the person has poor conversion of T4 into T3 and results show a low T3 level.  More often, blood test results appear normal, even in the face of severe symptoms.  

The reason for poor cellular response to thyroid hormones may be difficult to determine.  In these rare circumstances, the patient may only improve when placed on a combination therapy, taking T4 and T3 hormones together. Generally, adding T3 to the treatment protocol will restore cellular metabolism to normal and give a person their life back."

[busdriver31]

I am taking 200mcg Levothyroxine for thyroid replacement.  My thyroid was ablated back in 2001 with radioactive iodine therapy.  Since then I have switched to a 2nd endocrinologist who I have currently been seeing for about 7 years.  Dilema: I cannot get my weight under 200#.  I walk, I run 5k's, I am on a low-carb 1200 calorie diet, I drink well over 100 ounces of water daily, I do not drink soda's, coffee, tea or alcohol.  I have never smoked or drank.  I started taking 10,000mcg Biotin to help with the never-ending peeling fingernails and my hair sheds worse than a dog.  My DR doesn't understand why at such a large dose of Levothyroxin that I still struggle with weight.  I see her every 6 months and it's the same story.  I used to be on 325mcg of Levo but she started gradually reducing that amount (because of lab results).  Would I benefit weight-wise if I could convince her to switch me to Armour, or at least add Cytomel?  I've already been thru menopause 11 years ago (I'm only 53 yrs old), so that is not the reason for my weight issues.  Thanks for any and all advice.