Dose increase but labs stable. How is it possib... - Thyroid UK

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Dose increase but labs stable. How is it possible?

Hashimoto123 profile image
14 Replies

Hello everyone!

I hope to get your feedback on some questions I have.

But first some background:

I am male with hashimoto for many years without any symptom.

I was recently reduced my t4 dose due to being very stable. After this all hell broke loose and got tons of symptoms.

So my questions:

1. I have now tried increasing back my dose from 100mcg to 150 mcg on a step of 10 mcg per month. Prior to the increase, I tried to have labs taken to review the state I m in. However my labs are almost identical on each sample. Tsh around 1,8 (range,: 0,5-5) ft4: 1,3 (range: 0,7 -2 ) and ft3: 3(range: 2 - 4,4). How is it possible to keep increasing the dose while my labs keep stable? I keep thinking that no matter the dose my labs won't be changed at all!

2. I keep getting my thyroid swollen, painful and especially when I touch it - even slightly- I get a wave of hyper symptoms, as if t3 is released to my system. My Endo thinks that this is not a symptom of hashimoto, has nothing to do with the dose reduction, and is another thing entirely called subacute thyroiditis. So my question is to all the fellow hashimoto sufferers: have you ever experienced this? Can this be caused by hashimoto? Or is my Endo right in calling it another thing on to of hashi?

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Hashimoto123
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14 Replies
shaws profile image
shawsAdministrator

I am sorry you are very symptomatic and this is a link that may be helpful for you:-

pennmedicine.org/for-patien...

Hashimoto123 profile image
Hashimoto123 in reply to shaws

I have seen this link, but thanks a lot for providing it. What I'm trying to understand is to your experience, can this be caused by the dose decrease all along? Since increasing the dose again on my own seem to alleviate my symptoms. Is there such a thing as a painful, swollen inflamed thyroid in hashimoto solely? Or does hashi not cause pain as my Endo commented?

shaws profile image
shawsAdministrator in reply to Hashimoto123

As I'm not medically qualified I cannot answer your query. This is a link and you may find it helpful and it may answer your question:-

nhs.uk/conditions/thyroiditis/

Hashimoto123 profile image
Hashimoto123 in reply to shaws

I wasn't looking for a medical advice, more like other people experience. On any case thank you very very much for your help and feedback!

shaws profile image
shawsAdministrator in reply to Hashimoto123

Other members will also respond when they read your post :)

tattybogle profile image
tattybogle

It's often the case that my labs move in the opposite direction that is expected, or not as much as expected , or not at all . Sometimes they move to the direction expected but months later than expected.

There isn't usually an explanation, and if there seems to be , i wonder if it's just coincidence .The fact is, the regulating system we are interacting with by taking hormones is extremely complex , and probably a bit 'broken' or at least altered by our disease and our taking of hormones.

So blood results can only ever be part of the picture , you need good records of dose changes and how you felt and a long history of this.... and even then , sometimes things still just don't make sense.

It 's been said that treating thyroid is more of an art than a science.

I'm not sure on the subacute thyroiditis or not ? question.

It would be interesting to know your blood results that led to the dose reduction, and this may shed some light on what's going on.

On the face of it 'reducing due to being stable ' was a nonsense reason. When you're stable they are supposed to keep dose there , not mess with it.

Hashimoto123 profile image
Hashimoto123 in reply to tattybogle

Thanks a lot for your info! I understand that you think what you said is not much but you helped me a lot! I now understand that the labs are not exactly an action-result kind of thing, where a levo increase always results to tsh decrease and the other way around. Maybe it's a bit "broken" as you say due to fluctuations and continuous dose changes. Thanks again!Regarding the dose change he Said that since I am stable for many years (weight, dose, no symptoms at all and steady labs) it may be that hashimoto maybe curing itself so it would be valuable to reduce the dose in case it's not needed by my system. I don't know if such a thing is possible, but for sure my labs didn't show such a thing:

Tsh: 1,9 (0,5-4,5)

Total T4: 15,75 (12-22)

The labs he performerd also contained many other hormones (prolactin, testosterone, cortisone etc) but I am not sure if it's related.

tattybogle profile image
tattybogle in reply to Hashimoto123

as far as i know, the only kinds of thyroid problem that sometimes resolves naturally is post partum thyroiditis ( ? within a year) and De Quervains (subacute?)thyroiditis which is painful and self limiting . But autoimmune hypothyroidism with or without a swollen thyroid(Hashimoto's and Ord's)- is usually painless (sometimes was called silent thyroiditis) doesn't fix itself . it just progresses slowly.

In reality doctors rarely know for certain which kind we have , or how to tell if it's got better by itself.

But If you had raised thyroid antibodies at diagnosis , chances are you have autoimmune hypothyroidism, it's by far the most common cause, and it doesn't go away.

If he acknowledges you have hashimoto's , he should know that doesn't get better, and if he doesn't he should read more.

Ask him to show you research examples of hashimoto's that has got better, i think he'll struggle.

The other thing i've learned about thyroid hormones , is , if you feel well on a dose ,don't change anything, whatever the doc's say.(or at least , find out about the 'risks' of remaining on the dose you are on for yourself, before you agree)

If you do change anything , make the smallest dose change possible , and leave it to settle for several months before you decide what to do next... in my opinion this system just doesn't like to be messed with, and takes absolutely ages to settle down again once you have .

I think whoever advised you to lower your dose to see if you'd magically got better should learn the lesson "if it ain't broke ...."

It's such a shame you feel rubbish now when you were ok before. There was no reason to reduce or change dose based on those results, just curiosity on the part of the doctor to see it you could manage without it. The dose you were on was doing you no harm whatsoever, and there was no risk to you health from carrying on taking it, both TSH and FT4 were within range.

You can see how my own TSH/ft4 do not do as expected here;

healthunlocked.com/thyroidu...

Sometimes fT4 is up after reducing dose, sometimes TSH is up after increasing dose.

GP's only explanation is " are you remembering to take your tablets regularly ?" yes i am.

Hashimoto123 profile image
Hashimoto123 in reply to tattybogle

Yeah I do have raised antibodies and am diagnosed with autoimmune thyroiditis for the past 20 years. But I started having mostly hyper symptoms when I decreased my dose. So it's either the autoimmunity and results of my decrease, or something new, subacute, which coincidenced with the dose change, as per my Endo.

Thanks a lot for all the info! Wish I new them back then. And especially thanks for the link of your own labs. This is helpful to know that sometimes this is the normal behavior of our endocrine system and not something entirely new, wrong with me. This is exactly what I was looking for when I posted this question, similar cases to mine (I could not find them with a search on the forum).

How are you feeling now on the 112 mcg?

And have you had any changes in weight during this time on your post? According to drs this may be the reason for such differences on the same dose.

tattybogle profile image
tattybogle in reply to Hashimoto123

nope, no weight changes to explain it, that would be too easy ;) , and i think it would have to be a quite substantial difference to effect dose.Although i have stared to acquire a spare tyre recently, which i think is related to being on less dose than i used to be, cos i've eaten much less food this year than ever before.

I cant tell how i feel to be honest , nothing bad , nothing good, but now a load less fit than when i was on 125. Can't tell what's 'thyroid dose fallout' and what's 'pandemic fallout', and i'm sailing pretty close to being actually depressed, but so is half the planet i think.

But changing dose has done me no favours , and i felt much better on 125 before this fiddling about with doses happened . Wish i'd told Gp keep his nose out and trusted my instinct much earlier TBH.

Moan moan moan... ignore me, i just don't like winter, and should probably be hibernating 🐻

Lora7again profile image
Lora7again

Why did you reduce your dose if your condition was stable?

Hashimoto123 profile image
Hashimoto123 in reply to Lora7again

At the time I never had any symptoms, so I didn't bother researching myself and TSH, Ft3 and all things thyroid seemed to me like alien. So I did what Endo told me. The only thing that bothered me then was to know that I would have to be on medication for my whole life since I considered myself a very healthy active individual. And when he argued that being so stable may mean that hashimoto may be curing itself and there may not be a need to continue medication I was thrilled. How little I knew!I don't even know if hashimoto is possible to be completely cured or if it was stupid. The main thing is that my labs didn't show anything like over medication.

Lora7again profile image
Lora7again in reply to Hashimoto123

I bet he specialized in diabetes and knew nothing about thyroid disease. My Endo was useless as well so I walked out of his clinic never to return after he offered me counseling for feeling so ill. I don't think thyroid disease can ever be cured myself and even though I am in remission from Graves' I know it won't last forever unfortunately.

Hashimoto123 profile image
Hashimoto123 in reply to Lora7again

Yeah I got that a lot this period from various endos myself. It's all in your head (and bp, and heart rate and hands tremble but who looks into such things? Lol).Even if it is possible to completely cure it I don't think I it so easy since I have never heard anyone doing so. But I hope you do, or at least have the remission for many many years to come).

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