Is decreasing a dose slowly as important as inc... - Thyroid UK

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Is decreasing a dose slowly as important as increasing?

Jampuppy profile image
84 Replies

I just found out that the effects of an overdose of thyroxin can last for weeks. My docs don't feel qualified to answer my question. So I'll ask here: My uninformed doc upped me by 62mcg in one dose (without checking my adrenals or heart). When I had a terrible reaction, I pulled it back to 50 the next day then tried a 27mcg increase the next. So I switched to a natural supplement but I am still having some hyperthyroid episodes 12 days later. My numbers are normal. Would you stop supplementing thyroxine completely?

Thanks for your suggestions.

FYI I have *finally* been referred to an endocrinologist, so hopefully I'll get some better care.

EDIT:

TSH 4.06 (0.40 - 4.50)

FT4 0.9 (0.8 - 1.8)

FT3 3.0 (2.3 - 4.2)

B-12 575 (231 - 931)

Folate 15.4 (>=5.0)

Total 25-hydroxy vit D 52 ng/mL (30-80)

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Jampuppy
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84 Replies
Jampuppy profile image
Jampuppy

Oops. I meant to add that even the 27mcg increase created a bad reaction.

greygoose profile image
greygoose in reply to Jampuppy

What sort of a reaction?

greygoose profile image
greygoose

Can you give us some idea of the time scale, here? How long after taking the extra levo did you have the reaction? Increases and decreases should only be done by 25 mcg at a time.

How much were you taking at the time of the increase? What 'natural supplement' are you now taking? It's difficult to make any suggestions without more details.

Jampuppy profile image
Jampuppy in reply to greygoose

6 weeks 50mcg

I Day 112

I Day 50

1 Day 77

10 days Thyro Life Force (5 days full dose, slowly dropping off - now just 1/4-1/3 cap am and pm)

general overdose symptoms - fast heartbeat, shaky, feel faint, weakness, tight chest, ...

greygoose profile image
greygoose in reply to Jampuppy

OK, so Thyro Life Force doesn't have any hormone in it, so you've been ten days without any hormone at all. It should be almost all out of your system, now. If you're still having the symptoms, then it was probably nothing to do with the levo.

Jampuppy profile image
Jampuppy in reply to greygoose

Where did you get that information? It has desiccated bovine thyroid, pituitary and hypothalamus

greygoose profile image
greygoose in reply to Jampuppy

Well, it's impossible to check the ingredients on the site, because you have to register. But, it says it's vegetarian, so I don't see how it could contain bits of cow. I don't know.

Jampuppy profile image
Jampuppy in reply to greygoose

Yeah that site is annoying. I had to have my doc register to see the complete write-up on it.

greygoose profile image
greygoose in reply to Jampuppy

Makes you wonder what they've got to hide!

helvella profile image
helvellaAdministratorThyroid UK in reply to greygoose

It does, doesn't it.

However, ingredients appear to be:

Causal Chain Ingredients: Ant Pituitary 20 mg, Ashwagandha 400 mg, Bacopa Monnieri (Brahmi) Water hyssop 300 mg, Bladderwrack powder 250 mg, Chromium GTF 100 mcg, Coleus forskohlii extract 50 mg, Commiphora Mukul (Guggal gum) extract 100 mg, Hypothalamus 20 mg, Iodine (Bladderwrack) 150 mcg, Manganese glycinate 10 mg, N-Acetyl Tyrosine 500 mg, Potassium iodide 100 mcg, Selenium 55 mcg, Thyroid 200 mg, Zinc glycinate chelate 25 mg

drdoreenbellschiffert.com/s...

greygoose profile image
greygoose in reply to helvella

100 mg hypothalamus?!? Whose hypothalamus? How can they call that 'vegetarian'? Is it cabbage hypothalamus? Or pineapple hypothalamus?

Other than that, it's just the usual mishmash of bits and pieces that people think help their thyroid. Although I don't see how hypothalamus helps thyroid... Or am I missing something, here?

Still no thyroid hormone, though.

Jampuppy profile image
Jampuppy in reply to greygoose

There is thyroid. This is to balance the whole HPA axis as well.

greygoose profile image
greygoose in reply to Jampuppy

Oh, yes. Missed that. But, it's just the Dessicated glands, no guarantee there's any hormone in it. If there were, they wouldn't be allowed to sell it OTC.

There's also rather a lot of iodine in it. I don't think that's a very good idea.

Jampuppy profile image
Jampuppy in reply to greygoose

You can buy desiccated thyroid OTC?!

greygoose profile image
greygoose in reply to Jampuppy

No, that's what I'm saying. It isn't NDT because it doesn't have any hormone in it. No measurable amount, anyway.

humanbean profile image
humanbean in reply to helvella

Ant Pituitary 20 mg

Sorry, I saw that, and burst out laughing! A human pituitary is the size of a pea. What size is an ant pituitary?

Jampuppy profile image
Jampuppy in reply to humanbean

Hahahaha! 🤣

humanbean profile image
humanbean in reply to humanbean

I should point out, of course, that no ants would have been used in this product.

Ant pituitary will be short for anterior pituitary.

But, just like greygoose said about the hypothalamus, it can't possibly be a vegetarian product with pituitary in it.

helvella profile image
helvellaAdministratorThyroid UK in reply to humanbean

Ho ho! :-)

Just possibly, ant = anterior:

en.wikipedia.org/wiki/Anter...

(For anyone who finds themselves here and confused!)

humanbean profile image
humanbean in reply to helvella

I beat you to it by 2 minutes. See the post above yours, from me. ;)

helvella profile image
helvellaAdministratorThyroid UK in reply to humanbean

Of course, we do see some pea-brains (especially some who treat thyroid issues) - would they count as vegetarian source? :-)

Jampuppy profile image
Jampuppy in reply to helvella

Hahahaha Yes, I think we can count them as a vegetarian source. 😄

Jampuppy profile image
Jampuppy in reply to greygoose

The thought had crossed my mind!

Jampuppy profile image
Jampuppy in reply to greygoose

Also, Levo has a half life of ten days in those with a slow thyroid and will leave waves for longer from an overdose. So this is definitely related.

greygoose profile image
greygoose in reply to Jampuppy

OK

Marz profile image
Marz

How are your levels of ferritin - folate - B12 - VitD ?? - if low in range could be the cause of symptoms you describe. Are you taking other meds ? Gut issues ?

Jampuppy profile image
Jampuppy in reply to Marz

All normal; no other meds. Gut is off and def a factor but not the cause

Marz profile image
Marz in reply to Jampuppy

Do you have the actual results ? - only trying to help. Normal does not say anything 😊 Most illness starts with the gut I have read ...

Jampuppy profile image
Jampuppy in reply to Marz

You're right. I'm unaccustomed to conversing with those who know that. I have the results but too shaky to look for them now.

The endocrine system is a mystery. No on truly knows where it starts or stops, in my opinion. But gut is definitley an influence for sure!

Marz profile image
Marz in reply to Jampuppy

If you are shaky that could be adrenals - low B12 or low T3. Do hope you soon feel stronger .....

Jampuppy profile image
Jampuppy in reply to Marz

I am sure the adrenals were severely impacted by the overdose. I just want to make sure that by completely stopping the Thyro Life Force I won't be making things harder on myself. I'm tired of these spikes. They are almost always between 10am and noon but yesterday I had a bad one from 12:30-1:30. It was scary. I have never ever had this experience before the doc shot my dose up by 60mcg.

Thankfully I ran for years and have a very strong and healthy heart!

Thank you!

in reply to Jampuppy

Hi Jam, I've read your responses. If your thyroid goes too low, your adrenals will go high. So, adrenaline will be very strong in order to make the difference. This may make it difficult to know whether you are over medicated and having hyper reactions or so low your adrenals are running to your defense. I totally stopped everything when I felt over medicated but not for long. Give your adrenals support.

stopthethyroidmadness.com/a...

Jampuppy profile image
Jampuppy in reply to

Thank you. So it seems I should stop it completely. ...for now.

in reply to Jampuppy

For a complete explanation how the thyroid works or not work, this man is excellent.

youtube.com/watch?v=BTNhlkO...

Jampuppy profile image
Jampuppy in reply to

How do you support adrenals? That article is long. Maybe it's buried in there.

in reply to Jampuppy

They love vitamin C and magnesium. If the are healthy enough to handle a stimulant, licorice root and siberian ginseng.

This video might be better.

youtube.com/watch?v=T_Re4ja...

Jampuppy profile image
Jampuppy in reply to

Oh! Maybe that's why I crave an inordinate amount of fruit!!

Thank you oodles and bunches and geet loads!

in reply to Jampuppy

You're welcome jampuppy. Keep learning because you'll be a better doctor than the ones being paid.

Jampuppy profile image
Jampuppy in reply to

Yeah I am stunned by how misinformed the pros are!!

in reply to Jampuppy

Don't expect much from the endocrinologist either. You are hearing from voices of experience.

Jampuppy profile image
Jampuppy in reply to Marz

I edited to add my results

Marz profile image
Marz in reply to Jampuppy

Ranges ? Were you supplementing B12 at the time of the test ? Folate works with B12 in the body so it would be good to have that result. No Ferritin result - or VitD. Good levels needed for thyroid hormones to work well even in perfect health 😊

Jampuppy profile image
Jampuppy in reply to Marz

I don't see the Ferrutin numbers on the lab work. It lists it but it's blank. I'll have to see what's up.

Marz profile image
Marz in reply to Jampuppy

Were you supplementing B12 at the time of the test ? VitD result ?

Jampuppy profile image
Jampuppy in reply to Marz

I wasn't supplementing & still haven't found the VitD result.

Jampuppy profile image
Jampuppy in reply to Marz

Vit D is 52 (ref30-80)

Marz profile image
Marz in reply to Jampuppy

Guess that is the US range measured in ng/L. So looking good ....

grassrootshealth.net

JS33 profile image
JS33

Those numbers don't look normal for someone with a thyroid problem, but the ranges would help. Looks like you need some thyroid hormone.

Jampuppy profile image
Jampuppy in reply to JS33

They have changed immensely since my diagnosis. Ranges added.

JS33 profile image
JS33 in reply to Jampuppy

If those numbers represent your current thyroid status , youre hypo .

I would be upping my meds and making sure I was taking something which contained a known amount of actual thyroid hormone ,t4 or real ndt such as thyroid -s

Jampuppy profile image
Jampuppy in reply to JS33

Really? So you think I should stop the ThyroLifeForce add the Levothyroxin back in and that'll stabilise me? I do have a pill cutter and could take a very low dose - say, 25-30mcg.

JS33 profile image
JS33 in reply to Jampuppy

I don't know anything about thyroid life force except for the discussion in this thread , but those blood levels are low for someone with hypothyroidism and the tsh is higher than recommended , suggesting you are either youre not taking enough meds or you are taking meds without enough actual hormone content .

On those bloods , i would up the t4 , and consider ditching the thyroid life force due to being unsure as to what benefits it was giving my hormone levels.

If I was disappointed with using t4 only , I would use a real ndt which has varifiable and stable t4 and T3 contents . Thyroid s can be sourced relatively easily online.

Jampuppy profile image
Jampuppy in reply to JS33

I'm just wanting to stabilise. These feelings are awful. If some of the t4 I have will even me out I'll gladly take some until I can get on something I prefer.

JS33 profile image
JS33 in reply to Jampuppy

I would increase by 25mcg as you say you had a bad reaction to too high an increase. Then get your levels checked again in 4-6weeks.

Your t4 and T3 are well low in the range so you have some way to go , but remember,with your levels low and the higher tsh ,your own gland is giving you some hormone at the moment and when you increase your tsh will come down and your own gland will produce less , so you may feel a little worse before it gets better and think you are hyper,which would be almost impossible from where you are at the moment. Best of luck.

Jampuppy profile image
Jampuppy in reply to JS33

That sounds good...and makes sense. Thanks for your input!!

JS33 profile image
JS33 in reply to Jampuppy

You are welcome

Jampuppy profile image
Jampuppy in reply to JS33

One quick question - how worse? I can't afford worse. I am dysfunctional as it is. I'm even thinking I should take 12.5 tonight to divert another spike and 25 in the morning.

When my T4 and T3 were normal, my TSH was 12. So I assume by lowering the TSH my thyroid stopped producing enough to keep me stable.

JS33 profile image
JS33 in reply to JS33

Try spitting into two doses and take in the morning and evening.

You shouldn't feel much worse , I meant more that some symptoms may go and you may think there are new ones.

Remember ,when you up the dose it takes a week to get into your system.

Jampuppy profile image
Jampuppy

I feel so awful. I thinking of trying to raise my T4 with the leftover Levothyroxin just so I don't have these scary spikes.

I could try to get through the night and take 25-30mcg tomorrow morning and see if my adrenals calm down.

I have already gone to the ER once. I really don't want to go again.

ljk1 profile image
ljk1 in reply to Jampuppy

When I took Levo I took it at night,my GP and Endo also suggest trying it at night for anyone with problems similar to yours.

Jampuppy profile image
Jampuppy in reply to ljk1

Oh good! That sounds like a good option for me. There's way too much stress on my adrenals. Thank you!

steviecat profile image
steviecat

Spikes? Have your antibodies been checked? Do you have Hashimoto's?

Jampuppy profile image
Jampuppy in reply to steviecat

Yes they were checked and within range. By spikes I suppose I mean the adrenals - shaky, etc.

if your adrenals are fatigued then any increase in thyroxide will give a bad reaction as the T4 is not converting to T3 and will increase your chances of having toxaemia.

my adrenals where in failure and the Gps still told me to increase thyroxide.. hence this resulted in toxaemia . I stopped 150 at one go ... and now take natural supplements for both adrenals and thyroid ?

In January as I stumbled blindly / crawled out of the Gps room.. she said

" you can't live without thyroixde.. you'll be back begging for some "

5 months later feel better than I have in 25 years...

doesn't always pay to listen to GPs!!?

Jampuppy profile image
Jampuppy in reply to

Well I don't know if they're fatigued. They certainly seem to be reacting very strongly to this new arrangement. Before this my levels were completely normal except for TSH, which as 12.1

SueAndHerZoo profile image
SueAndHerZoo

I know everyone is different, but whenever I make ANY change to my Levo dose, no matter how small and no matter if it's an increase or decrease, I go through 5-6 weeks of "symptoms" before the new dose settles in and my body adapts to it. I don't care if there is any medical evidence to back it up - I know my body and after many years of dealing with this, I have seen what will happen to me, physically and emotionally, whenever I have to change my dose. Or even when I am taking temporarily taking another drug (totally unrelated to thyroid) that affects the absorption of my Levo, I go through the same thing. Once my levels are steady, I feel fine, but while they are transitioning, I feel it for 5-6 weeks.

Jampuppy profile image
Jampuppy in reply to SueAndHerZoo

What symptoms do you experience?

These are so bad it's dangerous to drive and I lie on the couch most of the day.

SueAndHerZoo profile image
SueAndHerZoo in reply to Jampuppy

They don't come all at once but instead fade in and out for the duration of 5-6 weeks. Irritable, moody, angry, crying, light-headed, dizzy, nauseous, diarrhea, ANXIETY, depression, rapid heartbeat, palpitations, pins and needles/tingling of skin , headache, too much energy, then crashing fatigue. Just to name a few. It throws my hormone system totally out of whack whenever I change doses.

Jampuppy profile image
Jampuppy in reply to SueAndHerZoo

Wow!!! That's acceptable to you?! OMG!

SueAndHerZoo profile image
SueAndHerZoo in reply to Jampuppy

Acceptable? Not really, but what choice do I have? I have a very sensitive system and I am very aware of every little thing that happens in my body. Knowing in advance that this is part of the process and that it won't last forever helps a lot.

Jampuppy profile image
Jampuppy in reply to SueAndHerZoo

I sure hope you find/someone creates an alternative! How awful!

steviecat profile image
steviecat

You can't just assume your adrenals are playing up. Have you had a cortisol saliva test? I can't work out if you think you have low or high cortisol. Without evidence, you cannot blame your adrenals - they may be working perfectly. It could just be hormone medication or mins and vits. To be sure, you need all the information at your fingertips.

Jampuppy profile image
Jampuppy in reply to steviecat

Of course I don't know. No one does. But I'm not going to sit around doing the same thing that has landed me in the ER. It is likely that the severe and sudden dip in all my levels - TSH, FT4 and FT3 has stressed my adrenals. That's all I have to go on.

steviecat profile image
steviecat in reply to Jampuppy

Yes they do - know that is. They, like me and many others here, have had a 24 hour cortisol saliva test. It's inexpensive and accurate. You simply cannot just guess that this is your problem. Sorry, but I'm right on this.

Jampuppy profile image
Jampuppy in reply to steviecat

No one knows now, is the point. And no one will know until the doc orders the test. Or can I order my own test? If so, where?

steviecat profile image
steviecat in reply to Jampuppy

Doctor will order blood test. It is not very accurate. 24 hour saliva test is far more accurate.

Private - inexpensive tests can be obtained from:

bluehorizonmedicals.co.uk

or: medichecks.com

Search on saliva test for cortisol or adrenals

:-)

Jampuppy profile image
Jampuppy in reply to steviecat

THank you very much!

Jampuppy profile image
Jampuppy in reply to steviecat

I am in the US but this helps me to see what the test is and how to choose the right one. Unfortunately, they appear to be 3-4 times as costly here. 😥

steviecat profile image
steviecat in reply to Jampuppy

Ah. Sorry about that - didn't realise...

Jampuppy profile image
Jampuppy in reply to steviecat

I'm sorry too, given our current political situation! 😄 It's okay. I do expect to be referred to UK sites, given it is a UK forum! 👍

steviecat profile image
steviecat in reply to Jampuppy

No worries. Hey, I hear you got a new president. Maybe he has a dodgy thyroid? :-)

Jampuppy profile image
Jampuppy in reply to steviecat

😄 I think most of him is dodgy! Thankfully it's temporary and not contagious!

steviecat profile image
steviecat in reply to Jampuppy

George Harrison recorded a great album back in days of yore: 'All Things Must Pass'. Seems appropriate somehow...

Jampuppy profile image
Jampuppy in reply to steviecat

I remember that brilliant piece of songwriting!

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