Struggling post thyroidectomy - is is possible for your body to reject thyroid medication?

[AtFyn]

Hello everyone,

This will be a somewhat lengthy post, so I apologize in advance, I am just desperately in search of anyone who may have/had similar struggles.

I had my thyroid removed May 2021 due to papillary thyroid cancer. I was 32 at the time and overall pretty healthy. My TSH was always normal (between 1-2) prior to surgery. After surgery, I was put on 120mg Armor (I requested Armor to try). I felt really decent until I started having so hyper symptoms. One day I came home and felt really tired and overall terrible. After changing, I felt like I caught a chill and curled up in my bed shivering. The shivering turned into a head tremor. My husband took me to the ER where my TSH was 0.08. My belief was I was in the initial stages of thyrotoxicosis due to my TSH being so low. I think the starting dose was inappropriate.

After seeing my endo, she was convinced it was from the Armor and wanted me on Levo because it's a more exact dose. The head tremor lasted about a month before finally going away. I had a full neurological work up done (including a MRI), and they found nothing. Since switching to Levo - I have been consistently hypo, with numbers ranging from 8 - 43+.

I had a second head tremor episode in August 2021 - it came on the same way as the first and lasted about 2-3 weeks.

I have been on so many doses of Levo - 125, 150, back down to 112, 125, 137, and most recently 150 again.

This last Sunday, (10/23/2022) I had a repeat head tremor episode (again, same symptom: tired, chill which turned into tremor - but this time with some chest pain and slight shortness of breath). Again, visited the ER and all of my labs and X-rays came back normal except for my TSH. My last reading at my endo in September was 9. I was on 137 and he (new endo) upped me to 150 at that time. I was at my PCP on the 19th and had labs drawn and my TSH was 5 at that time. In the ER, my TSH was 14.8.

The new endo is 1000% sure it has nothing to due with the thyroid, but its neurological and wants me to get a second opinion. My PCP thinks it's the Levo and wants to switch me back to Armor.

After a year and a half of this rollercoaster, I'm honestly starting to worry that maybe it's just the synthetic thyroid hormone in general. Is that possible?

If you've made it this far, thanks for reading. I'd love to hear any similar stories and what your experience was.

[SlowDragon Administrator]

Just testing TSH is completely inadequate

obviously essential to test TSH, Ft4 and Ft3 together

Always test thyroid levels early morning, around 9am and last dose levothyroxine 24 hours before test

Also essential to test vitamin D, folate, B12 and full iron panel test for anaemia including ferritin

When were these last tested

What vitamin supplements are you currently taking

Essential all four vitamins are OPTIMAL

Many people post thyroidectomy need small doses of T3 prescribed alongside levothyroxine……if Armour or other NDT doesn’t suit

Do you/did you split your Armour into 2 doses per day

When TSH was 5 what were Ft4 and Ft3

Similarly when TSH was 9 and 14

[AtFyn in reply to SlowDragon]

It has been next to IMPOSSIBLE to find a doctor or an endocrinologist who will test more than TSH and T4. They always all claim that the TSH number is the most important and all that matters. It has been immensely frustrating.

I was only on the Armor maybe a month before the hyper symptoms started and my surgeon was the one who prescribed the dose. It seems like every doctor I've met as been anti-Armor and so I'm guessing he didn't know how to dose it.

I believe I had the vitamins tested last year. I know I was getting B12 shots for awhile last year because I was SO tired even though my B12 levels were normal.

I did not split the Armor - it was once a day. That's how I've taken all my thyroid meds. I am just feeling like it's next to impossible to find a good doctor who will treat more than just in a textbook manner. They all keep stressing that I need my TSH in normal range to suppress any cancer regrowth. I am consistently shot down whenever I try to bring up any of the other tests

My PCP is the ONLY doctor who I actually trust. He's seen my struggles and he wants to treat me and my symptoms and doesn't only care about the numbers. Hes the one who wants me to go back on Armor.

[SlowDragon Administrator in reply to AtFyn]

Majority of patients on NDT will need to split the dose ….2 or 3 times per day

Like here in U.K., in USA you can get full thyroid and vitamin testing done yourself privately

No point testing thyroid levels until been on constant unchanging dose levothyroxine or NDT minimum 6-8 weeks

Always test thyroid levels early morning, last dose levothyroxine 24 hours before test. If on NDT ….day before test ALWAYS split dose as 2 or 3 smaller doses spread through the day…last dose approx 8-12 hours before test

On NDT (or adding T3 to levothyroxine) it’s almost inevitable that TSH will be suppressed. It’s to be expected.

Most important results are always Ft3 followed by Ft4

Suggest you get vitamin levels tested now

Testing in USA

stopthethyroidmadness.com/r...

healthunlocked.com/thyroidu...

[Brightness14 in reply to AtFyn]

I had a thyroidectomy back in 2015 for the same cancer as you. Before it was removed my thyroid was working perfectly. I never had any Levo or NDT before the op. I was put on Levo ,various doses all making me feel ill and I started to put on weight. I then joined this site and started to medicate myself with NDT starting with one grain and working up to 2.25 grains for over seven years I felt well. This was split into two doses. You started to high on 2 grains I believe. I don't know about you tremors, sorry. Your TSH reading should be supressed because of your previous cancer.

[pennyannie]

Hello AtFyn and welcome to the forum :

A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin plus a measure of T3 at around 10 mg plus a measure of T4 at around 100 mcg.

T4 is a storage hormone and needs to be converted by your body into T3 the active hormone said to be around 4 times more powerful than T4 - Levothyroxine.

Your ability to convert the T4 into T3 can be compromised by non optimal levels of ferritin, folate, B12 and vitamin D plus inflammation, antibodies, any physiological stress ( emotional or physical ) depression, dieting and ageing.

Some people can get by on T4 - monotherapy :

Some people find they need a little T3 along with their T4 making a T3/T4 combo likely to try and replicate their own ' lost ' natural thyroid production :

Some people can't tolerate T4 - and need to take T3 Liothyronine only :

Whilst others find their health restored better taking Natural Desiccated Thyroid as it contains all the same known hormones as that of the human gland and derived from pig thyroids dried and ground down into tablets referred to as grains.

With Armour it is suggested you start low and slowly build up your dose in 1/4 grain increments weekly/fortnightly - and when and if you reach 2 grains you stay on that dose for 6-8 weeks letting it bed in and then run a blood test.

What was the reason for starting on 2 grains after your thyroidectomy and how long were you on 2 grains and feeling well, before everything went down hill ?

Were you on T3 after your thyroidectomy and then switched to Armour ?

Maybe 2 grains was too much but wonder why this fullest spectrum of thyroid hormone replacement wasn't adjusted down until you stabilized ?

It is essential that you are dosed and monitored on your Free T3 and Free T4 blood test results and not a TSH reading as your HPT axis on which the TSH relies is now not a reliable measure of anything.

Your Hypothalamus - Pituitary - Thyroid feedback loop is now not complete and this circuit broken as your thyroid is not there and this feedback loop broken.

The TSH was originally introduced as a diagnostic tool to help identify a person dealing with hypothyroidism and was never intended to be used once the patient was on any form of thyroid hormone replacement as then you mu dose and monitor of Free T3 and Free T4 blood test results.

[AtFyn in reply to pennyannie]

I've never been put on T3 - I've been told that the few times they have tested my T4 and it was normal that I didn't need it.

It has been next to IMPOSSIBLE to find a doctor or an endocrinologist who will test more than TSH and T4. They always all claim that the TSH number is the most important and all that matters. It has been immensely frustrating.

I was only on the Armor maybe a month before the hyper symptoms started and my surgeon was the one who prescribed the dose. It seems like every doctor I've met as been anti-Armor and so I'm guessing he didn't know how to dose it.

My PCP is the ONLY doctor who I actually trust. He's seen my struggles and he wants to treat me and my symptoms and doesn't only care about the numbers. Hes the one who wants me to go back on Armor.

[pennyannie in reply to AtFyn]

In the UK we generally need to pay to run our own blood tests to be able to see how well we convert T4 into T3 and it's similar over here, though to get prescribed Armour through our National Health Service, virtually impossible.

Since coming on this forum to try and understand what had happened to me, I buy my own NDT and am much improved - I too do not have a thyroid, though I'm with Graves Disease and post RAI thyroid ablation back in 2005 becaming very unwell around 8 years later and fell into this amazing forum researching low ferritin.

Armour is a brand of Natural Desiccated Thyroid and the original successful treatment for hypothyroidism for over 100 years and on the back of which Big Pharma launched it's T3 and T4 options alongside the introduction of the ranges and guidelines and how to treat with thyroid hormone replacement.

NDT is the most complete of all the options and yes, I think you probably started on too high a dose.

[Hidden]

the starting dose of Armour they put you on is enormous! It sounds like perhaps Armour suits you better, but you need to wean up to the right dose much more slowly to avoid transient hyper symptoms.