How to convince doctor that TSH is not the most... - Thyroid UK

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How to convince doctor that TSH is not the most important lab result?

vocalEK profile image
7 Replies

In December 2018, I sent a message to my PCP: "I continue to be plagued by worsening hair loss, nails splitting, dry skin, fatigue, under eye swelling, neuropathy, foot cramps, cold intolerance, heat intolerance, weight gain and difficulty losing weight, constipation, brain fog, loss of outer eyebrows, tingling in hands and feet, as well as Reynaud's phenomenon." I have been taking 175 mcg Levothyroxine for several years.

Testing revealed my Free T3 was under range at 1.9 pg/ml. TSH and FT4 were both in range at 1.79 uIU/mL and 1.5 ng/mL, respectively. My PCP agreed to start a trial of Cytomel (T3). To my surprise, I received a supply of 25 mcg tablets. I had been expecting 5 mcg tablets.

On December 31, I sent a message to her: "I decided to titrate my dose of T3, and have been taking 1/4 of the 25 mcg tablet per day. What I have noticed so far is that my bowel movements have become regular. I plan to increase to 1/2 tablet next week."

On February 12. while I was still taking less than a full tablet, my FT3 had increased to 3 pg/mL, while TSH went down to 0.108 uIU/mL. In March, TSH had gone down to 0.01 mIU/mL, FT4 was down a little to 1.5 ng/ML, and FT3 was at a very nice 4.2 pg/mL, in the top quadrant of the range. Not much later, she phoned to say that she was concerned about how low my TSH had gone. I had noticed a few palpitations, so I agreed to cut the dose of Cytomel in half.

After I saw the lab results from April, I wrote to her: "Back at the beginning of April, I may have spoken too quickly when I suggested lowering the dosage of Cytomel to half of a 25 mcg. tablet. My blood tests of 3/19/19 were actually ideal, with free T3 and free T4 both near the top of their ranges. I had already noticed improvements in many of the hypothyroid symptoms I reported when we began this journey.

After I began taking the lower dose in response to your concern about the low TSH result, only one symptom continued improving -- I no longer suffer from frequent constipation.

But my hair has gone back to being dry and breaking off, and both thumbnails and the middle nail on my left had are still splitting vertically, with no evidence they are growing back as normal nails. Also note that the lab result of 4/19/19 while on the half-dose shows that FT3 has dropped from 4.2 pg/ml to 2.9 pg/ml (only 37% through the range). So apparently a drop of 12.5 mcg per day (50%) was too much for my body to handle well."

She agreed to provide me with a prescription of 5 mcg tablets of Cytomel. I discussed taking 3 per day to raise my daily intake to 15 mcg. As it happens, the pharmacy sent me 90 tablets, with a direction to take 1 per day. At the rate of 3 per day, those would be gone before it was time to retest blood levels. My solution was to take half of one of my remaining 25 mcg tablets, adding one of the 5 mcg tablets in the afternoon. Thus my new dosage worked out to 17.5 mcg per day.

When she had me retested in May, she forgot to specify FT3 in the lab order. All I could tell from those results is that things appeared to not have changed from April. I saw her for a bronchitis attack at the beginning of July, for which she prescribed doxycycline, 5 days of Prednisone, and benzonatate. She renewed my Ventolin inhaler prescription. I decided to wait until all these drugs cleared my system before retesting, because being ill can affect thyroid lab results, as can some medications.

Now that she has seen my results from July 29, she wants to call me to discuss a change in medication. How much do you want to bet that even those the TSH has (nominally, I'll admit) improved, she wants to reduce meds to bring my TSH up to a "healthy level." No, those aren't her words, but that's the way the endocrinologists have the medical world oriented: TSH, and only TSH results show how healthy your thyroid is. Both FT3 and FT4 are lower than they were in April.

How do I feel? Well the improvements in my digestive system and weight have managed to stay will me and I have managed to lose a little more weight. The hair, nails, fatigue, etc., etc. are still problematic. I still need a nap every day, despite getting at least 7 hours sleep at night.

My goal (since FT4 is doing fine) is to bring my FT3 level up to at least 3.8 pg/mL. I want to go back to taking a full 25 mcg tablet of T3. I hope meeting this goal will bring along my other hypo symptoms.

Comments? Convincing arguments?

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vocalEK
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NWA6 profile image
NWA6

Can you ask her why she thinks TSH should be higher? See what her argument is? I bet you know why TSH can be disregarded so I won’t go over it but throw the question back at her and see what’s said and then counter with your reasons why TSH is rubbish as a thyroid health test and why T3/4 are the best indicators of health.

SlowDragon profile image
SlowDragonAdministrator

This is good scholarly article on the irrelevance of TSH on Levothyroxine and/or T3

pdfs.semanticscholar.org/b2...

As we all know on here, taking almost any dose of T3 will suppress TSH

Osteoporosis not linked to low TSH

healthunlocked.com/thyroidu...

Gingernut44 profile image
Gingernut44 in reply toSlowDragon

Hi SD, many thanks for those links, I think some more printing out is called for and further drip feeding to my GP 😊

vocalEK profile image
vocalEK in reply toSlowDragon

That article by Dr. Linder is well worth the read. I think I will attach the PDF to my next message to my PCP. I liked the other abstract as well. Thanks SD.

I have been thinking about asking my GP why he thinks he is better qualified to make decisions about my thyroid care than I am. And I imagine he can come up with very little other than he once qualified as a doctor, therin giving me an opportunity to explain both all the learning I have put in over the past 8 years, the studys I have read and discussed posted by Diogenes, the amount of time I have spent posting and advising on an NHS recommended forum, the successes I have had, the improvement to my health and the fact that at 53 years of age I both know my body very well and have about twenty years more life experince than him. I might then like to point out that it is my body, that I live with the consequences of treatment decisions and because of that and that his lack of training I should make the decisions re my care. Maybe not. I would be inclined to buy yourself some T3 to supplement GP offerings or maybe take the studys in suggested but dont just leave them with the GP so they are never read but ask for her to help you under stand it. So you could make an appointment saying you are confused about something you have read in regard to your thyroid care and would like her to go through it with you. You can then sit with her and ask her questions while you look at it with her to help nudge in the right direction. I am afraid it probably is a matter of being a bit manipulative because a normal sensible conversation, adult to adult impossible I am afraid.

LAHs profile image
LAHs

You have done all of the right things, Varying your dose and recording the effects are excellent. Getting your doctor to agree with your suggestions is probably a waste of time. You are entering the realm of being a self medicating patient. Basically you have to do the thing that is making you well but this is going to reduce your TSH and your doc is never going to go along with that. Your doc is prescribing the right medication but in the wrong dose. Accept the medication without argument but then take it in the dose which makes you well. (They don't keep track of how fast you get through the meds)

This is what many of us here have to do, myself included. Just thank your lucky stars that she does at least prescribe T3. Sometimes you cannot have it all your own way, meaning that you know what makes you well but you also want your doc to go against her stupid guidelines (i.e. go along with suppressed TSH). It's a bit like telling a priest that you killed a guy because he was evil incarnate, so will he please bless you! No, he won't. You have to do what is right for you and go it alone, that is what many of us here do. Welcome to the group.

vocalEK profile image
vocalEK in reply toLAHs

Thanks, LAHs. Good suggestion. I just found a site online that sells 100 25 mcg tabs for $36 US. Hope Mexican pharmacies can be trusted. There is also the site that I ordered from many years ago. Antiaging-systems.com They sold 20 mcg tabs of Cytomel, 50 tablets for US $29.99. There is also a $7.50 to $15 shipping charge, but I'm not sure how ordering works for non-US customers. It has been years since I ordered anything from them, but the product was good.

It seems that the medical professionals have been trying to keep the patients down for many many decades. jamanetwork.com/journals/ja...

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