# Taking Synthroid and Cytomel, labs keep going down.....??



## ifthespiritmovesme (Jan 8, 2014)

Why would my FT3 and FT4 go down after starting meds? I haven't tested FT3 since increase, but FT4 keeps going down,even with increases in dose. After starting Cytomel, my FT3 went down also.

Thanks for any ideas...


----------



## Lovlkn (Dec 20, 2009)

What med's and doses are you taking?

When and how do you take them?


----------



## ifthespiritmovesme (Jan 8, 2014)

I take .075 mg Levothyroxine and .025 mg Cytomel both together in the morning. The Cytomel is a .050 mg tablet that I split. The Levothyroxine is a .,050mg tablet...I take one and split one to take. I do not take meds on the day of blood draw, which is usually in the early afternoon.

Here are my labs:

on ,025 mg Levothyroxine:

TSH 1.70 (0.10 - 5.50)

FT4 1.0 (0.7 - 1.6)

FT3 2.5 (2.3 - 4.2)

Started ,050 Levothyroxine in August:

November

TSH 0.43

FT4 0.9

Ft3 not taken

January:

FT3 2.7

Started 15 mgc Cytomel in May.

July:

TSH 0.63

FT4 0.7

FT3 2.6

Started .075 Levo and .025 Cytome in July. Havent had labs done yet. Will have that done on the 25th.

Thanks so much!


----------



## ifthespiritmovesme (Jan 8, 2014)

Nobody has any ideas??


----------



## jenny v (May 6, 2012)

I'm guessing your body really needed the Cytomel and is sucking it up. It will be interesting to see what your labs look like on the 25th.


----------



## Lovlkn (Dec 20, 2009)

1st - there is no need to split your levothyroxine as it has a very long 1/2 life. When you take it be sure to take it at minimum 1 hour away from food and 4 hours either side of supplements iron and calcium. Also, take with at least 8 oz of fluid / water would be best. Look at the supplements you are taking - what types of foods do you eat that might interfere with absorption?

I take my levothyroxine in the middle of the night as I tend to awaken every night to avoid any interaction

Cytomel has a much shorter life and can be split to spread out the benefit of taking it over the day. I for one take 12.5mcg and split my dose into 3 spaced approx 6 hours apart.

If you are splitting - it can be hard to get a "full 1/2 dose" due to uneven pill breaks. Break the pill you are taking for that day rather than breaking up the entire prescription and throwing it back into the bottle.

All I can think is you might be having some interference from not taking with enough water or because of uneven pill breaks.

Your levels are low to begin with so it may just be your needing additional medications.

Insist they run the FT-4 and FT-3 and ignore TSH while you dial in your dose. Even after you should ignore TSH for dosing as it lags up to 6 weeks and does not show active thyroid hormone in your system.


----------



## ifthespiritmovesme (Jan 8, 2014)

Jenny v - thanks for your reply...My shrink is of the same opinion. Just making sure he isn't feeding me a line to avoid further testing.

Lovlkn - I split the pills only to achieve the right dose. I don't split it throughout the day, but take both in the am. Granted, the pill splitting could result in uneven doses, but it's the best I can do, unless my doc puts me on one pill with the right dose. I split them only as I take them. I do take meds with a full glass of water, and I do not eat for at least an hour. All other meds and vitamins are taken at least 4 hours later, as I am aware that some can interfere with absorbtion. God, if only I can convince the doctors to ignore the TSH - my antibodies are most certainly rendering TSH unreliable.

I will wait to see what the labs show from the 25th, but I am really at my wit's end, dealing with doctors whose egos prevent them from listening to me and acknowledging that I have a problem. You would think that the VA would jump on my problems right away, because of all the negative info. that has been publicized, but, nooooooo. Everything is a huge fight, from tests to be performed, to giving me the meds I need, to upping doses based on my labs. Every month, I am afraid that they will stop the Cytomel altogether, and it is helping so much. It has been a decades long battle and I am very tired, beyond frustrated, and extremely angry. I will not live like this much longer, and am only hanging in as long as they are doing something to help me, but my hope is pretty much nil. I have nodules in the thyroid as well as lungs, antibodies (especially high thyroglobulin) and they look at TSH and T4 to determine the state of my health. Lord, help us....

Thank you both so much...


----------



## Lovlkn (Dec 20, 2009)

> I have nodules in the thyroid as well as lungs, antibodies (especially high thyroglobulin)


When is the last time you had a sonogram of your thyroid? Have they ever done a FNA of your nodules?

An elevated thyroglobulin could mean cancer - what do they say about that?


----------



## ifthespiritmovesme (Jan 8, 2014)

I had a sonogram in March and an FNA in May. They tell me "No cancer, no hashimoto's". They do not seem concerned at all about the thyroglobulin. "Hurthie cell changes" was noted on my FNA result. I thought the presence of Hurthie cells was significant, but again, they seem unconcerned. Now, I also have nodules in the lungs....they will do CT scans every 6 mo. to monitor those. Maybe I'll get lucky and the massive doses of repeated CT radiation will kill the damn thyroid.

I will look up the results of the FNA and post it, along with the antibody labs, as soon as I can. Remember, I am dealing with Endo. that stated that TSH and T4 were more reliable indicators of thyroid function than T3, and refused to see me, stating I was on adequate medication (my starting dose of Synthroid at that time)......I really, really, really hate those people......


----------



## ifthespiritmovesme (Jan 8, 2014)

OK - Antibodies: (March)

Anti-thyroglobulin AB: <20 Range 2.0 - 35.0

Thyroglobulin 93.7 2.0 - 35.0

Thyroxine Binding globulin 21.2 13.5 - 30.9

TSI 64 <140

Other info:

Cortisol 9.1 5.0 - 25.0

Triglycerides >400 (High)

FNA findings:

Approximately 20 cc of clear colorless fluid received with four unstained direct smears. One thinprep prepared. No cell block prepared.

Diagnosis:

Thyroid, right mid lower lobe, ultrasound guided FNA: Consistent with adenomatiod nodule.

Microscopic description: Regular follicular cells, some show Hurthie cell changes and spherules formation. Abundant colloid and occasional macrophages. Some smearing artifact seen.

This is the first FNA ever. How can they see "Hurthie cell changes" when this is my first biopsy, and what does that mean, exactly?

Based on these findings, they say no cancer, and no Hashi's. So what do I have?


----------



## ifthespiritmovesme (Jan 8, 2014)

I know there are more antibody tests, and I think they should be checked. Please tell me what you would ask for if you were me. I am fighting just to get serum ferritin, iodine, etc. checked. Someone is refusing to accomplish them. When I find out who, they will receive the bulk of my wrath - better be by phone, or they may get a broken nose for starters.

TSI says I am hyper, but I am definitely hypo. as far as symptoms go. Do I have Hashis, graves, hashitoxicosis, or what? I am baffled.


----------



## Andros (Aug 26, 2009)

Another Thyroglobulin and cancer
http://www.mdlinx.com/endocrinology/newsl-article.cfm/3305021/ZZ5052128790304906121963/?news_id=811&newsdt=092010&subspec_id=419

Thyroglobulin Ab
A negative test is normal. A negative test means no antibodies to thyroglobulin are found in your blood.
http://www.nlm.nih.gov/medlineplus/ency/article/003557.htm
(The normal thyroid has Thyroglobulin in low titers but should not have Thyroglobulin Ab)

Histologic diagnosis of Hashimoto's
http://emedicine.medscape.com/article/120937-diagnosis
(Copy and paste into your browser)

Hashimoto's Hurthle cells
http://www.pathconsultddx.com/pathCon/diagnosis?pii=S1559-8675(06)71549-2
(Copy and paste into your browser)

http://www.thyroidmanager.org/chapter/hashimotos-thyroiditis/
(Copy and paste into your browser)

http://www.mayoclinic.com/health/hurthle-cell-cancer/DS00660
(Copy and paste into your browser)

Cancer Hurthle Cells
http://www.thyroidmanager.org/Chapter21/ch01s12.html
(Copy and paste into your browser)

Hashimoto's Hurthle cells
http://www.pathconsultddx.com/pathCon/diagnosis?pii=S1559-8675(06)71549-2
(Copy and paste into your browser)

http://www.mayoclinic.com/health/hurthle-cell-cancer/DS00660
(Copy and paste into your browser)

Hopefully your free t3 will have gone up by your next labs?? Free T3 is still low. Target should be around 75% of the range given by your lab for the Free T3.

Please find out what the Hurthle changes are. There are Hurthle cells indigenous to Hashimoto's and there are Hurthle cells indigenous to cancer.

Information provided above.

Sending hugs your way!


----------



## Andros (Aug 26, 2009)

Symptoms can and do cross over; many of us have had ups and downs for years prior to settling down to one way or the other.


----------



## ifthespiritmovesme (Jan 8, 2014)

Andros - Thanks so much. Are there other antibodies you think I should have tested? Also, your advice about any other tests that might be wise to get? I do plan to requesat serum ferritin and 24-hr. urine iodine, selenium. Other than that, I don't know....
I missed this on my labs earlier -
TPO was also tested: it was 17, range: <35.

The following links are no longer available:

http://www.thyroidmanager.org/Chapter21/ch01s12.html
http://www.pathconsultddx.com/pathCon/diagnosis?pii=S1559-8675(06)71549-2

I really don't know what to do at this point. I have requested these tests before, get blood drawn, wait weeks for results, then find out the tests were never performed, repeat..... I really hate the way the VA is treating me. I did contact my congressman, Steny Hoyer. I'm supposed to hear from him by Wednesday. I am so sick of somebody overriding my doctors when it comes to testing and administering meds, primarily Cytomel. I feel that is a dangerous thing to do, since whoever it is blocking things has never seen or even talked to me. You can just look at me and tell I have thyroid problems - no eyebrows or body hair, puffy eyes and face. coarse, dry hair falling out, extremely dry skin, hoarse voice, etc...not to mention unseen symptoms (and I have nearly ALL). Strong family history....Mom had RA along with likely hypothyroid undiagnosed, sis had graves and a total Thyroidectomy many years ago. I do wish, with the nodules and Hurthie cell changes, that they would take the thyroid out, but they are very resistant to this idea. They just repeat their "standard of care, do no harm" BS. My attitude is that if you are not taking care of this problem, you ARE doing harm.

I will wait till I hear from congressman Hoyer Wednesday. Depending on what happens, I may go further - to the Scty. of the VA, and to President Obama. If that doesn't help, I may just become crazy enough (and threatening enough) to be hospitalized for suicidal/homicidal intention. Then, the plan would be to stay there and fight until they actually get to the bottom of this.

I want answers about my antibodies, but nobody seems to be able to tell me anything. I went to the ENT, and he just wants to send me to Endo, and I have ZERO confidence in them. They have been very poorly educated, thinking that TSH is the be-all and end-all, and that Levo alone is the cure for all thyroid problems.

Thank God, with finally getting Levo and Cytomel, I am feeling better than I have felt in decades. However, there are still many questions that need answering, and I need to know that cancer is absolutely ruled out. My fear is that I actually do have it and that it has metasticized to my lungs. Maybe the VA is hoping I'll die before they actually have to do anything for me.

It's been 6 months since the FNA. I'll ask to have that repeated, also. See if there are any changes, and request a more thorough examination - ie: What KIND of Hurthie cells? I'd also like to see the pictures of these nodules from the ultrasound.

At this point, if I see the hospital director or the chief of staff (who are just completely ignoring me), or the endo who refused the consult from my doctor after finding nodules, it would take a lot of restraint not to punch them in the face and hopefully break noses. I am just so frustrated, and I do not feel like I can keep fighting and fighting. I am very anxious every time I request a refill of my Cytomel, and pray that they continue it. These people are going to kill me.


----------



## Lovlkn (Dec 20, 2009)

If you tell them it's choking you and you are having trouble breathing when you lie down they may consider removal. I'm just sayin...

Seems to be what happens when I read about people on this and other boards.

You have antibodies - likely, because you have the TSI and even though below the range, you still have them. It's those antibodies and possibly the nodules that are messing with your lab's.


----------



## ifthespiritmovesme (Jan 8, 2014)

Thanks Lovlkn - I think the nodules are too small and too far away from my throat for them to buy that. Although in my desperation, it can't hurt to pursue any and all tactics for help!! I think all but my shrink and PCP think I'm a hypochondriac, anyway, so why not give it a shot. I think they're just fighting me for spite, now. The Endos. egos can't stand an educated patient. They want to punish me for not believing they are all-knowing Gods.

I do think the antibodies are screwing with my labs, but convincing them to disregard the TSH is no easy task. It took over 40 years of begging for help before I got the FT3 and FT4 checked just last year. Until 1997, this was outside the VA. I really did not expect to have to educate the people who are supposed to know what they're doing, but that is what we are forced to do. There is certainly much wrong with that situation.

I am just so grateful that I found this forum and all you very knowledgeable people!! Without all your help, I'd still be suffering far more than I am now. 2 years ago, I'd never even heard of Free T3!

Thanks ever so much!!


----------



## ifthespiritmovesme (Jan 8, 2014)

This is an update in my long battle with the VA.

Out of desperation, I wrote an email to President Obama. I did not expect a reply, but felt it couldn't hurt. Well, by 10 am the next day, I began getting calls from the VA from people falling all over themselves wanting to help me! I will have no further problems getting my Cytomel or the tests I request. They even offered to pay for me to see a specialist at Johns Hopkins! The White House actually called them! I am astounded.

Now, my question is this: Specifically what further tests should I ask for when bloodwork is done on the 25th? I will ask for serum ferritin, 24-hour urine iodine, selenium, along with cholesterol panel and cortisol, but I would like to know if there are other antibodies I should have tested.

Thanks sooooooo much!!


----------



## jenny v (May 6, 2012)

That is awesome!! I would definitely include Free T3, Free T4, a full thyroid antibody panel, Vitamin D and Vitamin B12. Also, blood cortisol can be completely useless, so I would ask for a 24 hour saliva cortisol test (it's way more accurate than blood, but some doctors can push back on it). You might even go to Johns Hopkins--heck, they offered!


----------



## Lovlkn (Dec 20, 2009)

You go girl!!


----------



## ifthespiritmovesme (Jan 8, 2014)

Thanks so much guys!! I have been on an emotional roller coaster these past few days. I am researching the VA and also Johns Hopkins in hopes of finding a doctor I would like to see. Meanwhile, my nemesis, the head of Endo. at the VA hospital has written me an email. He's renewed my prescription for Cytomel (under orders from the Chief of Staff). He is still stuck on monitoring TSH and ignoring FT3 and FT4. I wrote back,explaining that monitoring TSH was probably useless in my case, and that the goal is to get the frees into 50-75% of range to achieve a euthyroid state. I doubt he will respond. I know he has to be boiling mad for me causing so much trouble, which does not bother me in the least. He'll be replaced very soon by someone who is better educated.

I'm having labs done ASAP, and will post my new results as soon as I have them.

I can't thank you enough for all the support and help you have given me!!


----------



## Andros (Aug 26, 2009)

http://www.thyroidmanager.org/

Oh, boy............................pathguy was awesome!

Anyway, I just went into Thyroidmanager.org and it is up and running. Just copy and paste the above into your browser!


----------



## ifthespiritmovesme (Jan 8, 2014)

Thanks Andros!


----------



## Andros (Aug 26, 2009)

You are welcome! Sending hugs and prayers to you! You need them w/what you are dealing with!


----------

