thyroid hormone resistance? not getting better ... - Thyroid UK

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thyroid hormone resistance? not getting better on t4 alone or t4/t3

ochon profile image
20 Replies

Hi! 22 year old male. At diagnosis (classical hypo symptoms) TSH was 11, free t4 was mid range, and free t3 was upper mid range, and cholesterol was 205. Ferritin was 70, vitamin D was 40, no nutrient deficiencies. Upon taking 50 mcg t4 only, TSH came down to 2.01, free t3 did not change, and free t4 went to very upper end of normal range, but my temp/pulse/energy did not improve. Cholesterol got worse on t4 and went up to 250. I tried an even higher dose of t4 after this (63 mcg) and that made me feel even worse. Have tried various amounts of t3 (anywhere from 2.5 mcg to 20 mcg, giving each a 2 week trial) with this, and would feel better for a day or two and then feel bad again. Lowered my t4 to 36 mcg and felt better but still not euthyroid, and no amount of t3 could fix it. I read about John C Lowe from here and as of 3 days ago I have stopped taking any t4. I am going to do t3 only (currently taking 37.5 mcg t3 in the morning). Does anyone have experience with this type of transition? Does this look like thyroid hormone resistance? My waking temp is usually 96.5 degrees. Also, how long does it take to feel better if t4 was making me worse? I know it takes 6 weeks to fully clear out, but can I expect some improvement before then? Also how much t3 are people taking if they are doing t3 only? Thanks so much everyone!! New here and the support seems awesome.

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ochon
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SlowDragon profile image
SlowDragonAdministrator

How long were you on 50mcg levothyroxine

Standard starter dose levothyroxine is 50mcg ……wait at least 6-8 weeks before retesting thyroid levels

ALWAYS Test early morning and last dose levothyroxine 24 hours before test

Assuming test results show needing next dose increase

Increase to 75mcg …..wait at least another 6-8 weeks

Etc etc

pathlabs.rlbuht.nhs.uk/tft_...

Guiding Treatment with Thyroxine: 

In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months. 

The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).

The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range. 

……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.

The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.

ochon profile image
ochon in reply to SlowDragon

Hi! I was on 50 mcg for 7 weeks before I got my blood test showing the TSH of 2.01, normal free t3, elevated free t4, and cholesterol of 250. I spent 8 weeks on the higher dose and felt too awful to do more bloodwork, so I then dropped the t4 down to 36 and felt better but still not great.

SlowDragon profile image
SlowDragonAdministrator in reply to ochon

Was test early morning and last dose levothyroxine 24 hours before test

50mcg only starter dose

TSH shows you were ready for next 25mcg dose increase in levothyroxine to 75mcg and retest again in 8 weeks (or longer)

Which brand was 50mcg?

ochon profile image
ochon in reply to SlowDragon

Yes it was 24 hours elapsed and early morning. General levothyroxine. I did the dose increase and waited 8 weeks but after 2 months was feeling absolutely awful

SlowDragon profile image
SlowDragonAdministrator in reply to ochon

higher dose of t4 after this (63 mcg)

That was very small increase in levothyroxine

SlowDragon profile image
SlowDragonAdministrator

what are ranges on ferritin

Ferritin looks low (for a bloke)

What’s the unit’s for vitamin D nmol or ng/mL?

Are you based in U.K. or elsewhere?

B12 and folate results and ranges?

ochon profile image
ochon in reply to SlowDragon

b12 and folate were both in upper quartile. ferritin range is 10 to 300 and mine was 70. vitamin D range 30-100 and mine was 40. In the USA

SlowDragon profile image
SlowDragonAdministrator in reply to ochon

Ferritin 70 ug/L (30 - 300) Just 14.8% through range

Suggest you get full iron panel test for anaemia

see here for what needs testing

Medichecks iron panel test 

medichecks.com/products/iro...

Have you had TPO and TG thyroid antibodies tested for autoimmune thyroid disease (hashimoto’s)

ochon profile image
ochon in reply to SlowDragon

Have had all the antibody tests and they were all negative. Also have had full anemia panel done. Hemoglobin, hematocrit, serum iron, and iron saturation were all mid range

SlowDragon profile image
SlowDragonAdministrator in reply to ochon

if you add results and ranges

humanbean or SeasideSusie may pop by and comment

Have you had ultrasound scan of thyroid

20% of Hashimoto's patients never have raised antibodies 

healthunlocked.com/thyroidu...

 

Paul Robson on atrophied thyroid - especially if no TPO antibodies 

 paulrobinsonthyroid.com/cou...

jimh111 profile image
jimh111 in reply to SlowDragon

Be careful. Ferritin does not have a linear distribution, it is exponential so if you want to find the postition in the range you should use ln(fe). It is better to take the median rather than the mean. 70 ug/L is average for a male. See researchgate.net/figure/Dis... for a picture of the distribution.

SlowDragon profile image
SlowDragonAdministrator in reply to ochon

Are you taking any B vitamins?

Vitamin B complex? Or B12?

ochon profile image
ochon in reply to SlowDragon

Yea I have tried methylated and regular b complexes and they made no difference. Mainly concerned about thyroid hormone resistance

SlowDragon profile image
SlowDragonAdministrator in reply to ochon

But you have only been on tiny starter dose levothyroxine

Levothyroxine doesn’t top up failing thyroid, it replaces it

Important to get dose increased as fast as tolerated

if you aren’t responding to t3/t4 then you can check your adrenals 🙂 there is info in my bio x

jimh111 profile image
jimh111

Resistance to thyroid hormone (RTH) is a genetic condition where there is a mutation of one of the genes that produces thyroid hormone receptors. It presents with elevated fT3 or fT4 and a non-suppressed TSH. Your results are somewhat consistent with this although they would probably represent a milder form.

It's also possible that your TSH is the result of assay interference giving a false TSH number. In this case you might not have hypothyroidism.

What are your exact signs and symptoms? The ones that bother you the most. Also, what is your pulse rate?

RTH is treated in a few specialist centres. Your cholesterol result doesn't have the usual UK ranges so which country are you in? This would matter if you were to be tested for RTH.

ochon profile image
ochon in reply to jimh111

In the USA, normal range for cholesterol is 125 to 200, after getting on t4 mine got worse and went from 200 to 250. Signs and symptoms are cold extremities, waking up in middle of the night, fatigue, edema (face and hands). Not sure what my pulse is but I know it is quite common for me to wake up with my temp around 96.5.

jimh111 profile image
jimh111 in reply to ochon

Body temperature is a very poor marker for hypothyroidism. You can take your pulse quite easily with a watch or clock. Or you can get a cheap sphygmomanometer (blood pressure monitor) or an oxymeter to measure the pulse rate for you. There is a heart rate app you can get for your mobile - don't use it! It gives the wrong results, I checked it.

In the UK we have a single centre of excellence that checks for RTH. You have to be referred by an endocrinologist. I don't know how it works in the USA, for sure they have the capability. There may be an issue of cost, whether you are insured or can pay for it. I think it's premature to look at RTH, the assay may be giving wrong TSH results, this could be checked by doing another blood test using a different assay machine, a biochemist at the lab could advise.

I had a form of RTH which is acquired, I refer to it as ARTH. it is caused by endocrine disrupting chemicals (EDC) called PBDEs, flame retardants present in the environment that disrupt thyroid hormone binding. The video on this page gives a simple but very information introduction endocrine.org/topics/edc . i describe my case here ibshypo.com/index.php/acqui... , click on the blue links at the bottom of each page to follow the narative. This part of the website is very technical, you may want to skip to the next paragraph instead!

I eventually found I could elimnate the EDCs using polydimethylesiloxane which is present in this over the counter treatment amazon.com/Enterosgel-Toxin... . Note you don't need to use the large recommended doses, less than a teaspoon daily is sufficient as PBDEs are present in minute quatities. I suggest you try this for three months before incresing your thyroid hormone doses. If it works you might be able to come off thyroid hormone treatment.

HeartWoman profile image
HeartWoman

Have you tried brand name, Synthyroid, since you are in the U.S.? Many people say they do much better on it than generics even if their numbers are good. I just switched to Synthyroid for consistency. I haven't had labs on it yet.

ainslie profile image
ainslie

I note you don’t seem to have tried NDT, eg Armour etc is there some reason for that

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