Thyroid Labs Bad- Doc Wont be Happy

[DebE13]

My endo was reluctant to put me on generic cytomel but said I could try since I was so insistent. He made it clear if my TSH wasn't in the rage he was comfortable with he may not continue with it. Any ideas what's going on? Do I need and increase in T3? I'm dreading my appointment next week in fear he may put me back on T4 treatment alone.

Thyroid Tumor Marker & Anti TG
<0.2 ng/mL
was at 70.8 when I was dx with cancer in August 2013

TA-TG
<20IU/mL
this has been the same at every reading since last August

TSH
2.69 uIU/mL
was at 1.85 in January before I started T3
it's been all over the place and I fear he won't like that it's rising while on T3 meds.

Free T4
1.1 ng/dL
was at 1.4 since last Novemeber

Free T3
2.2 pg/mL
was at 2.1 in January and 2.3 in December- always at the low end of normal

I am actually feeling better now, still tired, but better and I don't want to go off. I'm not sure how I should go about my appointment next week. Would an increase in T3 cause the TSH to go up more?

I'm currently taking:

T4 2- 50 mcg tablets Monday - Saturday
3 1/2- 50 mcg tablets on Sunday
These I take at night

T3- 5mcg once a day as soon as I wake up

My lab work is done at the same time of day each draw and I also waited until after the draw before I took my morning dose of T3.

Any suggestions would be greatly appreciated. My endo is NOT open to NDT

[Pat]

Deb,

I am new to hypothyroid taking NP Thyroid, a generic for Armour. Have you read Stop the Thyroid Madness? Very detailed book. Janie Bowthorpe, the author, is definitely pro natural thyroid. My doctor prefers it too so that is why I am on it. I think she would say find a new doctor. www.stopthethyroidmadness.com She recommends a forum for people who have had thyroid removed. Go to her website. She has studied thyroid like Tex has studied MC.

Pat

[DebE13]

Thanks Pat. I got the book right after my surgery. It is a wealth of information. I am limited to the doctors in my area- I've already looked. I cannot afford to go out of network and pay on my own. I'm new to the thyroid too but it's amazing how quickly one can learn to benefit their health.

[LindyLou]

Hi Deb, I have now been on Liothyrinine for about 3 months. I started out at 5mcg/day. Didn't notice much of a difference except although my a$$ was dragging, I wasn't napping as usual. After 6 weeks, my surgeon ordered a whoe battery of tests that included free T3. Once I got the results I found my T3 had only risen by .2 so I doubled my dosage and within 1 day I could feel the 'old' me starting to shine through. A couple of weeks later I saw my endo and told him what I did and how I felt. I thought he would get upset but actually he didn't and rewrote the prescription for 2x/day. It has also taken a while to fine tune when I take it as if I take it too late in the day I will have problems sleeping. My routine is T4 at 6:15, the first T3 at 7:00 and the last one between 1-2 in the afternoon.
When I first saw this endo, I pretty much had it in my mind where I wanted my levels to be and articulated that to him on the first visit. My ideal levels are for my TSH to be as close to 1 as possible. They are currently at .77. I know that borders on hyper but honestly I don't think it's the TSH that matters. The key for me is my T3. If I can keep it in the upper quarter of normal range I feel my best. He also is having me go for another ultrasound in 6 weeks to see if my nodules have grown or increased. I logged onto the hospital to view my medical records and read in his notes he is looking for thyca. He didnt say that to me but he did write it. How was yours detected? Was it on blood wok? My antiTG's are withn normal range but my AntiTPO is at 1300. (Was over 4200). Good luck with your next appointment. Healthcare should be a partnership. Hopefully your doctor will see it that way.

[tex]

Deb,

As you are well aware, I don't even own a white coat. However, here are my impressions of your results:

TSH
2.69 uIU/mL
was at 1.85 in January before I started T3
it's been all over the place and I fear he won't like that it's rising while on T3 meds.

The increase in TSH means that you need more supplement (the total amount of T3 and T4 in your prescription), not less. If your doctor doesn't agree, then I agree with Pat — it's time to look for a new doctor. I agree with the TSH goal that Linda mentioned. The so-called "normal" range is fine for normal, undiagnosed people, but for someone who is being treated for hypothyroidism, the goal should be to keep the TSH around 1.0 or below.

Free T4
1.1 ng/dL
was at 1.4 since last Novemeber

Again, that's consistent with my claim that you need more, not less. Your body is using more T4, so less is left over (free) at the end of the day. If your Free T4 had increased, your doctor could have claimed that you don't need the T3, because your body is simply using it instead of the T4. But since your Free T4 also decreased, obviously you need more of both the T3 and the T4.

Free T3
2.2 pg/mL
was at 2.1 in January and 2.3 in December- always at the low end of normal

Your free T3 hasn't changed by a statistically significant amount, so obviously you are not getting too much of it. Your body is using it, not allowing it to accumulate.

I am actually feeling better now, still tired, but better and I don't want to go off. I'm not sure how I should go about my appointment next week. Would an increase in T3 cause the TSH to go up more?

You will feel even better after your doctor does his duty, and increases your prescribed dosages (to bring your TSH down). If he refuses to do so, there's not much hope for him, IMO.

An increase in T3 supplement should cause your TSH to go down. A TSH increase means that your body needs more thyroid hormone than your thyroid (or in your case, your supplement) is providing. You should be taking T3 daily (not once a week). Once a week is a ridiculous way to prescribe a thyroid treatment. A normal thyroid supplies thyroid hormones daily, not once a week.

Tex

[LindyLou]

One other thought Deb, it's possible you could be converting to reverse T3. That should be checked.

[DebE13]

Haha, white coats are nice but not always the key to everything as I learned very quickly here.

Tex, I wasn't clear about the T3- I do take 5 mcg once a day in the morning each day of the week. The T4 gets a bigger dose on Sunday only because The levothyroxine by Mylan only comes in 50 mcg tablets if I want to avoid dyes and fillers that may be questionable for me.

Thanks for the easy to understand explanations. Maybe I should give my endo more credit and increasing the two will be my next step. I am focusing on a select few comments he made and that's making me nervous. I would think that would be the next logical step in the whole dosing protocol. I did get the Do No Harm speech although I have seven years worth of a lot of harm done by lack of care that makes me doubtful of the whole theory. He also mentioned if patients don't notice any big differences while taking the T3 meds there is no point in taking them since they are riskier than the T4 alone. I'm not sure where he wants my TSH to be (forgot, will have to ask again). I am not being treated as most cancer patients because mine were micro carcinomas and totally encapsulated. He also said they way they are looking at suppression of TSH is also changing. I believe he is one of the better endos in my area even though he won't consider NDT. I think it is more of a facility wide policy because I remember one of the nurses telling me I wouldn't find ANY doctor there that would or could write a script for it.

Although, he didn't agree with me when I told him I'd like to see my T3 closer to 4. Maybe I should have phrased it better by saying in the upper range. At least now I feel better prepared for my appointment and can ask for an increase in both if that's not the direction he is headed. I'm always preparing for the worst possible outcome.

LindyLou, I agree with the T3 being key. I'm also a member of the ThyCa support group and I read the same thing over and over there related to NDT and T3. I simply don't understand how so many people benefitting from it can be ignored. They are the actual ones living with it on a daily basis. Same goes for us here and MC.

I tried for years to get my thyroid looked at after joining this site. Before then I had no clue about the thyroid and the increased potential for issue for those of us with MC. I always was obliged and had labwork which always came back normal, therefore it was declared I was healthy even though I progressively got worse. Looking back, I'm sure I had Hashimoto's for at least ten years before it was confirmed. I can clearly remember being hyper and more recently extremely hypo. I finally switched doctors and went to a different facility. On my first visit my PCP checked my neck and found nodules. That was last August and after that it moved along rather quickly although didn't seem like it at the time. I had an ultrasound, labs, FNA, then the thyroidectomy. I was told I could wait a few years if I wanted but I knew something was wrong and just wanted to feel better. I felt a lot worse after the surgery but now I'm getting my hope back that I will be able to get out and enjoy my life again. My thyroglobuln was at 70.8 ng/mL when I was dx with cancer.

I just had an ultrasound this week as a follow up so I will find out the results of that next week too. I was only there for fifteen minutes so it went fast. I was originally told to expect 45 min - an hour to map all the lymph nodes.

Good luck with your ultrasound. Have you had an FNA yet?

[LindyLou]

I did have an FNA done last June. It came back as typical for Hashimoto's. I think what is going on is that the endo and I both believe I have hyperparathyroidism and I have now consulted 2 endocrine surgeons regarding this. Both doctors agree I do have it. One said its a mild case and the other thinks I'm at the beginning stages of this disease. Both are hesitant to operate, yet the only cure is surgery. I think they are waiting for some life event such as breaking a bone or kidney stones to form before they will agree to surgery. In the meantime, my bp is affected by this. I'm now on bp med #4 and it has brought on a severe flare of MC. Perhaps this endo is trying to find a reason for surgery and 'while your in there, check her parathyroids'. The second surgeon did say he thought I had something more important going on perhaps something along the line of a connective tissue disease and is assembling a team together which includes an immunologist, rheumatologist, endo, and GI. I'm supposed to be the selected topic of conversation. He also believes I may have something going on mast cell wise and was appalled at the treatment I received by my old GI doc when I asked about it. Sometimes I want to give up, stop fighting and let the chips fall where they might. But then I think about Dory from Finding Nemo and repeat the phrase - Just keep swimming, swimming, swimming........

[LindyLou]

I like that "normal range for normal" Tex. That is a very true and accurate statement.

[tex]

Deb,

Oops! I misread your dosing schedule. Thanks for clarifying that. Even so, the T3 you are taking is a very small dose — it's the absolute minimum dose. Normal maintenance doses are typically in the range of 50 to 100 mcg daily, for severe hypothyroidism (and I would say that not having a thyroid gland could be classified as severe hypothyroidism).

IMO, that old "Do No Harm" mantra is too often used as a cop out by docs who are afraid to use their knowledge/skills to treat patients responsibly. Failure to treat and under-treating are also examples of irresponsible behavior by a medical professional. The key here is that their legal liability is so much lower if they under-treat, so they take advantage of that quirk in the law to reduce their liability (cover their butts), when they aren't sure what they're doing. And of course, some use it as a regular insurance policy, even if they do know what they're doing, because few things can ruin your day faster than a lawsuit. In general, endos seem to be particularly prone to under-treating hypothyroidism.

Tex

[DebE13]

Do No Harm has validity but when a patient educates themselves and clearly shows the current method of treatment is not working then more needs to be done. I shouldn't be so harsh on him because he has agreed to everything i have asked for however in a much slower timeframe. I also keep reminding myself that it does take time for the meds to show if they are working or not and I need to be more patient.

I endured five months of terrible neck and shoulder tension /pain I knew was related to the surgery. I am told it is unrelated. I will never buy that. It must have been part of the healing process or related to regulating meds because I've noticed over the past month it's not been there. The deep pains in my shoulder blades has also been absent.

I know my complaints of feeling like I was going to jump out of my skin, being psychotic, and generally on edge ready to attack has gone. With that complaint antidepressants were suggested. another unrelated symptom. He did take notice the absence of my husband at my appointments. I needed support during the first months and didnt trust my mind/memory to go alone. I always took my husband or mom or both to have an extra set of ears. Now I go alone because my mind is sharp enough to filter the BS. I also don't have to bring my long list of reminder notes. I am making progress and couldnt have gotten here without all of you.

LindyLou,

I haven't looked into the reverse T3 but will keep it in mind.

I have no regrets about my surgery because I knew something major was wrong. There's debate going on now about the over dx of thyroid cancer and the removal of the thyroid gland in the case of micro carcinomas. I read this article from Mayo shortly after my TT and my heart sank for a moment. But I would not change anything if I had to do it again. I thank God that the hashimotos was found, and in my case, the way for that to happen was through the cancer being found.

I was fortunate enough to have no issues with my parathyroid. One of the four was severed during surgery but was implanted back in my shoulder muscle.

Why are they so reluctant to do a surgery? I'm not that familiar with hyperparathyroidism.... Wouldn't it be better to figure it out sooner than later? The only suggestion I would have is to be sure your surgeon has the experience and expertise in the neck area. I've read so many patient stories of complications/side effects that it is just plain scary. I'm sure some of the issues come with the territory of working within such a delicate area but inexperience can do great damage. I had the best surgeon and working in neck area is all he does. Please keep us updated on what they decide. You have a lot on your plate and I hope you find answers soon!