Still Fighting the Low TSH Battle

[vocalEK]

Here is my most recent message to my PCP:

I am alarmed to learn that the pharmacy has discontinued my prescription for 25 mcg. liothyronine.

On January 8, I wrote to you, reporting that I intended to increase my daily dosage of Cytomel (liothyronine) by adding a second 5 mcg tablet because I still had bothersome hypothyroid symptoms. Reducing my dosage from a full 25 mcg tablet to 17.5 mcg per day (1/2 of a 25 mcg tablet plus a 5 mcg tablet), had caused my weight loss to stall again, the incidence of Reynaud's to increase, and my nails to become more brittle.

I stated: "My goal would be to bring both free T4 and free T3 up into the top third of their range. This works out to approximately 1.3 ng/mL for FT4 and 3.6 pg/mL for FT3."

After the latest thyroid function tests, in a note on the test results, you expressed concern about the TSH result going from 0.07 to 0.01. (0.230 - 5.5)

On March 10, I reported that increasing my dose to 22.5 mcg had enabled me to titrate my dose of antidepressant from 300 mg/day down to 100 mg. Since then, I further decreased to a 100 mg tablet of bupropion every other day and finally eliminated it altogether.

If having a low TSH level is bad for my health, it is very strange that all that I have experienced between January and now are improvements in my health. I have lost a little more weight (down to 175 pounds -- no longer obese, merely overweight). My fingernails have, for want of a better word, solidified. I no longer experience the pain of a split fingernail catching on something and breaking off, sometimes into my skin.

The March 5 tests show my FT4 to be at 1.3 ng/mL (0.9 - 1.7), and my FT3 has gone up to 3.5 pg/mL (2.0 - 4.4) -- almost to my goal. FT4 continues at 63.64% through range, and FT3 is at 62.5% through range.

I wish to continue taking 22.5 mcg (half a 25 plus two 5 mcg tabs.) Would you please put in a new prescription for 25 mcg tablets of liothyronine. Phone if you have questions. XXX-XXX-XXXX

[greygoose]

Wow! That's telling him! Good letter.

[SilverAvocado]

Great letter, really clear statement of the evidence. I dont think anyone acting in good faith could disagree with you. Unfortunately...

Good luck!

[Geetal]

I thought I was being clever by not taking my thyroid T4 (100 synthyroid) for 2 days before my blood test instead of one and only the first of my slow T3(5mcg)(compounded. It worked my TSH was in range for the first time which pleased my GP but guess what as it was in range the labs did not produce a measure for free T4 or Free T3. You cant win can you!!

[Hidden in reply to Geetal]

I have learned to add T3 and T4 to the blood request (don't tell!) because if the request is for Thyroid testing they only test TSH, or occasionallyT4 as well.

One time I wrote "T3" on the form without specifying TSH and T4 as well, and they ONLY tested T3! But at least it was better than only TSH alone.

The only way to be sure is to do a private test, because they have to give you what you pay for.

[Lalatoot]

I am looking at papers online at the mo to make a case for tsh being suppressed on t4 t3 combo. From what I read last night I believe that tsh or its precursor trh respond to the levels of thyroid hormone in the blood not at a cellular level. Will do more research but if this is the case then it opens up the argument that we need more frees in our blood than normal as our cells are using it inefficiently.

[Mickeydooley in reply to Lalatoot]

Thank you for undertaking to do that. I’m very interested in your research as I’m also fighting a battle with my endo over suppressed TSH. I have increased my levo slightly without contacting the endo but will have to go back when things settle and ‘fess up’. He refused to increase my dose as tsh was 0.02 but t3 63% through range and T4 32% through range.

[Hidden in reply to Lalatoot]

That makes sense. Experience alone seems to show that blood levels aren't an accurate measure of how efficiently different tissues use thyroid hormone.

For example, I've had no problem at all with some peripheral functions, or even seem slightly over medicated. I often feel hot rather than cold, have little or no constipation (unless I take painkillers such as co-codamol). My heart rate is actually above average ( usually in the low 80s, resting).

But (in spite of good B12 levels for example) I still have hypo-related problems such as fine coordination and concentration.

[1239 in reply to Hidden]

I used to see the wonderful Dr S. He said time and time again that the blood test don't show how you are absorbing at a cellular level and that TSH would be suppressed on T3/T4 combo.

I too often feel warm even though my body temp is usually under 36 and my pulse is (unless I get anywhere near a hospital or endo) around 56-60. My B12 is right at the top of the range and I don't take any. Recently end I was sent to reduced my levo and objected to me taking NDT. I have put on weight and feel awful.

I have also been told by 3 nurses semi-recently that they are no only going to treat you by blood test results and don't care about any symptoms. All 3 nurses said it was very wrong but that was the way it is!

[Hidden]

Brilliant letter! Good for you.

[Hidden]

Yes, that's what I meant, was lazy and missed out the F! I've never had total T3 or 4 measured, only the Frees.

[Debon]

Maybe a little support. I fought with endocrinologists for years over my low TSH. Every time they cut my dose I would get sick. Stay on the couch sick. I finally found an endocrinologist who listened to me. She said my low TSH is due to a problem with the HPA axis and not because I was taking too much T4. She put me on T3 along with the T4. I eventually switched to Thyroid-S and then Thiiroyd. (She knew I was taking natural thyroid, but not from Thailand) My numbers with TSH as the exception are all in line and excellent. Unfortunately, most endos live and die by TSH. I hope that you can find an endo who cares more about how you feel than wanting to get you out of the office fast, or that this one will listen to you. Good luck!

[Hughes-Comrade]

The only thing I can add to the conversation (I was pm’d) is that our prescriber an ND advised us that if we take our thyroid medicine at say 9am every morning, then have the blood drawn at 9am before taking thyroid medicine. Wish I could help more, but not qualified.

[vocalEK]

VICTORY!

Received this response from her:

--------------------------------------------

HI,

This is a common issue other patients have had. It seems I cancel meds but I actually don't. They fall off active med list, I believe this is a computer issues, I sometimes have to go in and reorder,

I will update this on your chart so it is available.

Yes, you and I have already reviewed that you feel well and we would repeat labs in 6-8 weeks if possible given COVID outbreak

Hope you are staying safe!

--------------------------------------------

She and I had spoken by phone when I reordered the 5 mcg tablets. At that time I asked her to set the prescription for 2 tablets a day, to match what I had been taking since January. When I saw the 25 mcg tablets were suddenly showing up as "discontinued" in the system, I was afraid she had misunderstood and believed that I was taking only 10 mcg per day. Hence my message to her.

When I went to recorder the (now available) 25 mcg tablets, the directions read as follows:

"Instructions: Take one-half tablet by mouth daily for total 22.5mcg"

I believe that her specifying the total dosage was for the benefit of the pharmacy.

[Hidden]

😁😁😁😁 Thank God! Wonderful news x