conversion to Naturethroid no thyroid

[lassdancer]

Hx: I was diagnosed with Hashimotos at age 41. TSH was 8. I was put on 25 mcg of Synthroid. My maternal grandmother had a goiter removed and went on Armour thyroid. My mother adn one sister are on Synthroid.

I had my thyroid chemically ablated in my 40s. i was on 350 mcg Snthroid for 10+ years and felt fine.

I am now taking 112 mg Synthroid and alternating 25 mg Cytomel every other day with 12.5 Cytomel. My TSH is suppressed and stays suppressed unless the doctor lowers my dose to 50 mcg Synthroid-only No Cytomel. At that dose I am the walking dead. I can't think, keep gaining weight very painful joints, swollen ankles, hopeless mood.

Most recent lab results:
7.18/2013 free T4 1.0 (.8-1.7)
Total T3 74 (50-170) I have requested my endo get free T3 next time
TSH =200) vegan taking supplement qd
Iron 74 (50-212)
Iron binding capacity unsaturated 214 (110-370)
Total Iron binding capacity 288 (228-428)
Transferrin % saturation 26 (14-57)
Creatinine .61 (<1.0)   [Was up to 1.1 when thyroid dose at 100 mcg Synthroid-only Had to go out side of my medical system to get more thyroid]
Estimated average glucose 108 (85-126)  [within an hour after breakfast]
Hgb 1AC 5.4  (4.6-6.0)
WBC 3.0  (3.5-12.5)
Red blood count 4.15 (3.60-5.70)
Hgb 12.9  (11.5-15.0)
Hct 39.7  (34.0-46.0)
MCV 96  (80-100)
RDW, RBC 12.5  (12.0-16.5)
Platelets 113 (140-400)
Neutraphils % automated count 54  (41-81)
Lymphocytes % automated 34 (13-46)
Monos 10  (4-12)
Eosinophils 2  (0-4)
Neutraphils 1.6  (2.1-7.6)
Rheumatoid factor 2.7 <= 14.0 [up from 1.1 10/2011]
ANA antinuclear antibodies negative  (negative)
I have had several episodes of post surgical bleeding and hematomas on my thumb from simply opening a fiip top contact solution bottle. I have asked to see hematology to r/o Acquired Von Willebrands syndrome. I see the hematologist this week.
My GP said it wasn't an emergency because I had been chronically low.
When I asked my Endocrinologist to convert to Nature-throid he offered me 1.25 grains as a total replacement because my Synthroid dose was 112mg. He said that would give me a bit more than I was now getting so he would wait for a few months to check my lab values. I asked him about the fact that I was also taking 12.5-25 mg of Cytomel a day. He said if I didn't like this dose let him know. I emailed him. He said he thinks that dose would be toxic for me. He said we will get lab values again in a few weeks and then I can come in to see him.
What do you think?

[goolarra]

Sorry, I confused you.  I know the range is 0.8-1.7.  I was trying to illustrate how I got 55% (which you're right, either way looks good):

1 - (top of range - bottom of range)  1.7 - 0.8 = 0.9
2 - (your result - bottom of range)  1.3 - 0.8 = 0.5
3 - (divide result 2 by result 1 X 100)  0.5 / 0.9 X 100 = 55%

Some people's TSH is suppressed by meds.  I know one person whose TSH went to zero as soon as she started meds, and it has never come back up.  T3 and T4 are much more important indicators of thyroid status than TSH.  As you are well aware, that is the danger of using TSH to treat thyroid problems.  Your doctor should never have dropped you meds until FT3 was below range.

As I said, it doesn't seem like that little, teeny pill could cause your flatulence, but if you eat no animal products and haven't for a while, your gut has probably become very intolerant of them.  There are some "natural" (plant based) OTC gas remedies out there.  Experiment!

[lassdancer]

My lab's FT4 range is (.8/1.7) rather than( 0.5/0.9). Either way T4 seems okay. I was disappointed about the TT3 being so low.
Good suggestion about spitting the dose.
The reason the endo thinks my Pituitary may not be working is my cortisol level is low. And when they did a cortisyn (ACTH)  challenge my adrenals responded in normal range an hour later on redrawing the cortisol level. So my adrenals are working but my pituitary isn't sending ACTH down to stimulate them.
This is what a private pay head of endocrinology said in 2010 when my TSH didn't come into the bottom of the range until I was taking only 100 Synthroid. At that dose of TH I had TT3 under the range, low platelets, low neutraphils, DOE and third stage kidney failure which persisted until I doubled my dose and added Cytomel.
The flatulence started after taking the Naturethroid. I haven't tried over the counter remedies. I have tried walking and beets which helps somewhat. I will look into it.
Thanks.

[goolarra]

FT4 is 55.5% of range (0.5 / 0.9), so that looks really good.  You calculated TT3 correctly, and it's on the low side.  With FT4 at 55.5% of range, your T3 ought to be well up into the upper half of range.  It would be nice if it were FT3.

It's not unusual for TSH to be suppressed on meds, especially meds that contain T3.  I'm not sure any pituitary issue is indicated.  

How do you take your NT?  Do you split the dose and take half first thing in the morning, half later in the day?  If not, that could be the reason for your lack of energy in the afternoon.

I don't know what to say about the flatulence.  It seems odd that that little pill would be enough "animal" to cause your symptoms, but I guess if you're otherwise vegan...  Have you tried OTC gas remedies?

[lassdancer]

Thank you. Sorry, this is going to be long.
I got more lab. I am now on the 2 grains Naturethroid.
Free T4 is 1.3 (.8-1.7) 50% of range (Please check my math. Not sure.)
Total T3 is 78 (50-170) 23.4% of range (Please check my math.)
i love the Naturethroid. It feels soft, gentle and warm. I felt the pulses come back into my arms and legs with the first dose. It felt a bit weird but then I warmed up. It is like coming out of the Klondike. I took one blanket off the bed. Amen. I see the endocrinologist tomorrow.
My cortisol challenge test showed my adrenals are working but maybe my pituitary is not. Googled it. Not such good news.
I have very little energy especially afternoons. After the ACTH injection I had good energy for a couple of days.
At night my hands and feet get so hot I can't sleep. I have to take them out of the covers. This is not new. It was worse on the synthetics (Liothyronine and Synthroid). On the synthetics I dreamt of ice buckets to put my feet in. And they were hot to the touch and red!
One more thing. Flatulence sweet, distinctive, and voluminous. Any suggestions? I'm vegan. This smells animal and is socially inhibiting.

[goolarra]

I really don't know anything about either of those two conditions.  A quick google, however, brought up reliable sites that said that both can be caused by thyroid disease.  Also, both can be autoimmune, and once we have one AI, we're at increased risk of getting another.

I wonder how often neutropenia might be a symptom of hypo that is often reported as "get sick a lot" and thrombocytopenia as "bruise easily"???

[lassdancer]

Can you comment about neutropenia and hypothyroid?
I am also taking cyclosporin eye drops bid so that could be driving the neutrophil count down.

Also could you comment on thromobocytopenia and hypothyroid. I have that too.
Thanks

[goolarra]

Sorry, I got off on that and forgot to comment that I'm glad your doctor finally agreed to 2 grains.  It's still on the low side compared to your dose of Synthroid/Cytomel, but it's not a terrible place to start.  The equivalencies are "rough", and people react differently to desiccated than they do to synthetics.

[goolarra]

There's not a lot that I consider adequate when it comes to literature on lab test interpretation, and there are probably some very good reasons for that.

For one, there is no generic reference range because ranges vary lab to lab depending on their methodology.  This is further complicated because there is a lot of disagreement on what is the "optimal range" among practitioners.  Add to that, that different meds change lab result expectations and interpretations.  Most important of all, however, is that we all have our own personal comfort zone.

There are a few rules of thumb.  These are goals to shoot for only until you find where you feel best.  Symptoms should drive treatment, regardless of lab values, especially regardless of TSH.  Target for FT4 is midrange.  Target for FT3 is upper half of range.  FT3 (as a percentage of range) should be higher than FT4 (as a percentage of range), or slow conversion is indicated.  For example, if FT4 is 50% of range, we might expect FT3 to be 60-65% of range.  Once again, though, it's all subject to individual differences.  You might have all your symptoms relieved at much lower levels, or you might have to go much higher.

Also, all results are interdependent.  So, for example, we look at the relationship of FT3 to FT4 to determine conversion status.  However, how that relationship is interpreted varies depending on FT4 level, which meds are being taken, etc.

So, my best advice would be to post labs and ask for an interpretation.  If you want more clarification or are confused by the interpretation, ask questions for a more in-depth discussion of why the poster gave you the advice s/he did.

[lassdancer]

I am a Kaiser patient. I went Friday to a new doctor, an internist at Kaiser. I chose him because he had at one point ordered a FT3. But he said he did it by mistake and refused, loudly, very loudly, that it was his license and he would not do it again. I got the feeling he had been reprimanded for doing it the first time. He seemed very frightened to me.
At Kaiser there is no way to get into see any doctor or talk to a doctor's office unless their roster is open. So even though the name of an internist at Kaiser who does manage at least one patient on Naturethroid I can't get into see her. I tried.
The endocrinologist at Kaiser did eventually prescribe the 2.0 grains (130mg) of Naturethroid. But he faxed it to an outside pharmacy because he said it would be hard for Kaiser to get hold of it. The endocrinologist has written in my notes that we can disregard the TSH in my case but I have had to remind him each time I email him or talk to him that I have no thyroid gland and that we disregard the TSH in my case. Every time.
I suspect the low neutrophils and low platelets may be related to my thyroid. I Googled thyroid + thrombocytopenia and Von Willdebrand Type 1 came up. I have an appointment with hematology this week to see what they think.
I also suspect that my chronic kidney disease that surfaced 3 years ago was because I could not get Kaiser to raise my dose above 100 mcg Synthroid-only. At that time my TT3 was below the low normal level. I was confused and DOE at that time. The only option the then Kaiser endocrinologist at that time allowed me to do was convert to T3-only 25 mcg.
Can you suggest some reference material for thyroid lab test interpretation for me to read?

[goolarra]

1.25 grains of Armour contains approximately 11.25 mcg of T3 and 47.5 mcg of T4.  So, you're right, it's a huge decrease from what you are taking now.  Even 2 grains would only be 18 mcg T3 and 76 mcg T4, still a big decrease.

Your FT4 is on the low side at 1.0.  It's only 11% of range, and midrange is the target for FT4.  Your TT3 is at 20% of range, and target for that is upper half to upper third.  For what it's worth, TT4 is considered obsolete and not worth a whole lot.  FT3 gives a lot more information.  So, it looks like you need an increase, not a decrease.  Your doctor is obviously looking at your TSH and nothing else.  Your TSH is suppressed, which is not unusual when taking thyroid meds, especially meds with T3 in them.

Do you know what your FT3 and FT4 levels were when you were on 350 mcg of Synthroid and felt well?

What do I think?  I think you need a new doctor.  This one pays way too much attention to TSH and way too little to both FT3/FT4 levels and symptoms.  You can try to educate him, but it will probably be a lost cause.  

The best thing you can do is preinterview doctors over the phone before making an appointment to try to get a feel for how much they rely on TSH.  You can probably ask to speak to a nurse.  If the receptionist won't let you, ask her the question first, and when she doesn't know the answer, she'll probably put you through.  Ask which tests they customarily order for hypo patients.  Ask which meds the doctor is open to using.  

Do you think your neutraphil and platelet counts are related to your thyroid levels?

[lassdancer]

Sorry again. My endo said that about FT3.
FT4 is 1.0  (.8-1.7)

[lassdancer]

Sorry, I forgot to answer your question about FT4. I have asked him to test it next time. He said that is an outmoded test and irrelevant anyway.

[lassdancer]

Thank you for responding. I wish I were a better typist. That was a typo.

My TSH is <.01 (suppressed)
I asked to clarify. He wants to replace my entire thyroid dose T4+T3 with 1.25 grains. it seems very low to me. I countered with a request for 2.0 grains.

Because I have low platelets and low neutraphils I am very worried about taking his advise. I said I didn't want the 1.25 but eveidently he has mailed them to me anyway. He thinks I am hyperthyroid.

[goolarra]

There are a couple of things I'm not clear on:

Your TSH is 200?  And what does that have to do with "vegen taking supplement"?

They didn't test FT4?

Which dose does he think would be toxic for you?  1.25 grains as replacement for the 112 mcg Synthroid only (leaving your Cytomel dose the same) or 1.25 grains as replacement for your current meds entirely?