Levothyroxine

[Lily288]

Can someone please tell me why my TSH reads high but I need lesser dosage of levothyroxine. I was on 0.1mg or 100mcg and it read high about a month ago or close to 9 (sorry, I don't recall the terms). I have since been taking only half of my usual dosage of Levothyroxine that I'd been on for many years prior to this episode. I believe using Himalayan salt may have contributed to my going hyper along with a lot of bad stress....I cut my Levothyroxine down to half and took time to work through the stress and I am now feeling better and I'm still on only half dosage. I was just wondering why lowering my levo med dosage helped in adjusting these hyperthyroid symptoms. Thanks in advance.

[Justiina]

I don't understand the correlation of himalayan salt and hyper. It is just salt with some minerals.

If you have hashimoto it could have been flare up but to say we're you hyper or just stressed out you should have had your T4 and T3 tested.

[Lily288 in reply to Justiina]

Thanks for your input justiine...I found the iodine content on here in quote..,

bembu.com/iodine-rich-foods......

"" Himalayan Crystal Salt. If you’re trying to avoid conventional table salt but you’re worried about not getting enough iodine, Himalayan crystal salt is a viable alternative. Half a gram of Himalayan crystal salt provides 250 micrograms of iodine—over 150% of the amount the average body needs each day—so enjoy this special salt in moderation as part of a balanced diet.""

I thought taking 100mcg levothyroxine plus the iodine in the salt was way too much.... Our body needs only 150 or 165mcg daily...

I did read on Hashimoto...and you're right, I suspected a flare up....I had a virus and a death in family etc etc....

I did get tested and my TSH read high but still in the normal range at the time of this last reading...close to 9 IU...not sure how to write this... The main thing though, I'm still on only half my dosage of 100mcg and I'm feeling much better...

[Justiina in reply to Lily288]

My himalayan salt does not contain iodine and many other sources say that iodine in himalayan salt is very low unless added.

I have been eating himalayan salt for years and my iodine urine test proves it barely contains any as I eat a lot of salt

[Lily288 in reply to Justiina]

Thanks justiina

[Marz]

Hi Lily - there is no information in your Profile - so it is difficult to comment. We need some results of your thyroid tests - along with ranges. You are entitled to have copies of your blood test results.

You need to have your dose increased if your TSH remains high. It is often suggested on the forum - that you only show Hyper symptoms when the FT3 is over range .

[Lily288 in reply to Marz]

Thanks Marz, I didn't know to add information in my profile.. I apologize I'll look into this and I will call my doctor's office to find out the true readings or get a copy, but I was satisfied with our talk and I think my doctor is learning as well because she wanted to give me a higher dosage prescription, but I had to tell her that my body was already acting up ...or hyper like symptoms, jittery etc. on 100mcg, it certainly would not tolerate the higher dosage of 125mcg because like I told her, it would make me feel like jumping out the window so to speak...way too high for me still today.

I had been on 100mcg for many years, but I am now still taking only half or 50mcg Levo and I feel much better.....not so tired or so hyper.. I say hyper because a higher dosage makes me go into hyperthyroidism symptoms mode.....jittery and such....

I just recall my doctor telling me that my TSH reading was close to 9 but inside the normal range...

Thanks so much but I am still interested to know if this happened to anyone else... That is, go from one to the other, ie, hypo to hyper and according to books that I own this can actually happen to us and one can also go back to normal...my doctor agrees that we can go back to our usual or prior dosage. Normal would be nice. Again, thanks so much...it is great that so many replied to me...

[greygoose in reply to Lily288]

A TSH of 9 cannot possibly be in-range. The highest I've ever seen is 6, and that's rediculous, because one is actually hypo at 3. It's just that in the UK, they like you to suffer until your TSH hits 10 (that's probably what she meant, but it's far from 'normal').

Yes, going from hypo to hyper happens to a lot of people who have Hashi's. I've had Hashi's all my life - although undiagnosed until the age of 55, and I can count about four periods in my life when I went 'hyper' - although I didn't know what it was at the time. I just suddenly started losing weight without any effort, my normally straggly hair suddenly became thick and lusterous for no particular reason, and I had tons more energy than usual. But it didn't last long. I soon went back to the fat, mousey me. lol

[Marz in reply to Lily288]

Lily - you do not have to do anything When the Profile has been completed - it means anyone can read it before replying to you and they do not have to keep asking so many questions - saves you time too ! Click onto anyone;s name and you can read their's - if they have done them !!

[greygoose]

Who said you needed a smaller dose? Your doctor? You have to remember that doctors know absolutely nothing about thyroid. They have learnt certain 'rules', but they have no idea why, or how the thyroid works. And, don't forget that hyper and hypo symptoms cross over, and can easily be confused - especially if you are stressed - but that doesn't mean you are 'hyper' (over-dosed is a more accurate term).

Himalayen salt couldn't possibly send you 'hyper' - and when you say 'using', what exactly do you mean? And stress is more likely to make you more hypo - hence the rising TSH - than 'hyper'. Unless, as Marz says, you have Hashi's. But we would need to see your blood test results to know that.

[Lily288 in reply to greygoose]

Hi greygoose.. love that Canadian name...sorry if you're not Canadian..lol

I went to a "lower dose" on my own but at the time, I remembered that my doctor had told me that I could have done this (ie, lower my dosage) from the time I suffered with kind of a similar episode that I had mentioned to her in one of my prior visits ....(we determined it was thyroiditis) ......just remembering this now... My doctor told me that I did the right thing at the time before I was able to see her or feel good enough to get to my appointment...I felt hungry all the time, jittery and just ahhhhh, screamy like....so I cut back on my own and felt better in about less than a week and I was tested and like I told the other members above, this time, my test read high and after a long talk or deliberation, we agreed to continue as such... I'm still on half or 50mcg of my 100mcg dose..

Using... I meant putting it in my foods...😲 I don't take any other drugs... In fact, I think I should mention that I weaned myself off, 10.5mg Surmontil that I was taking for nothing....1 tablet before bedtime.. really...some doctors do like to prescribe for nothing....This was done by another doctor who doesn't know I've done this yet.... I thought I was addicted to it, but I was not.....I stressed a bit about the weaning, but I have to say that it was not hard to do at all, but I do think that this could have been a factor in my needing less levothyroxine... You don't have to agree and I haven't cast your advice and input aside either that's for sure as I'm loving this site, but these are my own thoughts, but legitimate and again and my doctor has agreed that it could have been the case. We don't know for sure yet...only that it could have been a factor... I feel much better on half dosage...

Thanks for the Himalayan salt lesson.. I will definitely take it into consideration as I am back using...uh....putting it on my food... I do need to read up on this Hashi's thing... but I do think that it is possible to go back and forth as we go through life's trials...so again, thanks for your input. I still hope that someone may have gone or is experiencing a similar happening. I will keep reading.. Love this list/blog.

[greygoose in reply to Lily288]

Ah. Well, you should have said straight off that you have Hashi's. That changes everything. You can have hyper swings, 'normal' periods, and hypo swings, right until the immune system finally destroys your thyroid. So, that is probably what happened. Nothing to do with the salt! But, it won't last. So, keep testing so that you know what your levels are and when you become hypo again, because your dose will need to go up again.

I'm glad you've started consuming salt again, because the adrenals need salt. And they have a hard time of it when we're hypo, and need all the support they can get. They also need vit C, so do make sure you're taking plenty of that.

No, I'm not Canadian. I'm English and live in France. I know it's called a Canadian goose, but the photo was taken in France.

[Lily288 in reply to greygoose]

To greygoose... I don't think I said I had Hashi's/Hashimoto. However, if Harishimoto means that you can go hyper and vice versa, this could be what I have experienced last few months so this is exactly what I was looking to discover on here.... So if thyroiditist mean it's a form of Harishimoto then guess I certainly have to agree.

But thing is, if going back and forth as such means that it's destroying my thyroid gland, I'd like to know how this could be happening to my gland because, if it is destroying it, how come my body needs only half or less of the Levothyroxine dosage that I have been on for over 20 years. And in this 20 some years, I have suffered from what is called thyroiditis only once and another unidentified episode a few years later....virus related.

This is why I have to continue taking half my 100mcg for now and if I begin to gain weight and/or develop other hypothyroid symptoms... constipation....I will go back to the 100mcg or I can increase it slowly back to 100mcg.

For now, taking half the 100mcg dosage, I am feeling fine but if I were to go back to my usual dosage of 100mcg or 0.1mg too suddenly this could swing me back to hyper. I'm a puzzle and my doctor agrees... Yes, a Canada Goose. 😊

[greygoose in reply to Lily288]

No, I didn't say you had Hashi's, I said IF you had, that would explain a lot more. Do your doctors say you have autoimmune thyroiditis? That's what they call Hashi's. Have you ever seen a copy of your blood test results? If not, I seriously suggest you get copies - it's your legal right to have them - so that you know exactly what was tested, and what the results were. Otherwise, no-one can really help you. It would only be guessing.

Hashimoto's thyroiditis is an autoimmune disease and the most frequent cause of hypothyroidism. What happens is, the immune system mistakes the thyroid gland for the enemy - like a cold germ, or something - and sets out to destroy it. As the damaged cells die off, they release all their hormone into the blood stream, so you have a massive rush of T4 and T3, and go temporarily 'hyper'.

But when that hormone has all been used up, you go back to being hypo again - only more hypo than before because there is now less gland to produce hormones. And, this carries on until the gland is completely destroyed.

So, you have 'hyper' swings, then gradually go down, through 'normal' to hypo again. Then, more cells are damaged, and you go 'hyper' again, etc etc etc.

There aren't any 'forms' of Hashi's, there is just Hashi's, indicated by raised antibodies in the blood - TPOab and TgAB. So, you need to know if you've had those tested.

[Lily288 in reply to greygoose]

Thanks for the explanation ..I have just called my doctor's office for copy of my blood test results. I will be picking it up tomorrow. My Doctor, GP, did not tell me that I have autoimmune thyroiditis , just that my TSH reads high. I have a book on thyroid and have read about thyroiditis. When I was first diagnosed with Hypothyroidism over 20 years ago and prescribed 100mcg Levo back then, I was good till this year. But with this new happening, i.e. hyperthyroidism or levo overdosed experience, my shakiness and other hypo symptoms have subsided on this 50mcg dosage.

Sorry, I am relearning my thyroid terms again.. I'm happy to have discovered this forum...I find the more information we get, the better we can cope... 🤗

[radd]

Lily,

Welcome to our forum and sorry to hear you are feeling unwell.

If your TSH was 9.0, then you needed a dose INCREASE, not a reduction.

Hyper and hypo symptoms may be confused and hyper are often bought on by a Hashi attack. Do you have thyroid antibodies ?

Excessive stress is detrimental to good thyroid function as will effect the workings of the HPA axis and how other hormones perform. Iodine can change thyroid function and is found in salt but you would need to eat a huge amount to influence your meds.

Excessive salt intake or a craving of it, is more likely to be connected to the adrenals, probably compromised through having to prop up a failing thyroid gland. Post any recent thyroid hormone test results complete with ranges (numbers in brackets) for members to comment.

[Lily288 in reply to radd]

Thank you radd. I'm happy that I have joined... I love this forum very much as so many show true concern in our health questions.

I think yes, I have to go ask my doctor but she did say close to 9 and that does seem high considering what the normal range is. But at the time, I may have been reading high still but I am now feeling much better and I will be tested again in a couple of months. So you're right that my hypo and hyper was confused..

I will definitely read on about HPA axis. Sounds interesting and I think this is the only way to go.. i.e. to learn all about how our body works or what it needs.

I was not craving salt, but rather wanted to eat better.

Thank you so much radd

[radd in reply to Lily288]

Lily,

Symptoms may lag behind test results by several weeks when medicating Levothyroxine.

.

Overview of The Endocrine System

thyroiduk.org.uk/tuk/about_...

.

Overview of The Thyroid Gland

thyroiduk.org.uk/tuk/about_...

.

Hypothyroidism

thyroiduk.org.uk/tuk/about_...

.

Stress & Hothyroidism

chriskresser.com/5-ways-tha...

[Lily288 in reply to radd]

Thank you radd. I did a bit of a look-see, but will peruse it farther a bit later...

[Eddie83]

If your TSH is high, you need *more* levo. It's an inverse relationship. But using TSH to titrate your dosage is not a good policy, you should base dosage on symptom relief, and on your FT3 and FT4.

[Lily288 in reply to Eddie83]

You're right Eddie83....this is exactly what my doctor wanted to do...she had her prescription pad ready to write me a prescription for a higher dosage, but guess I'm one of a kind and trying to figure out why I can't take a higher dosage. I have tried but it makes me feel hyper... I know, I'm weird I guess, but it is possible that my body's needs have changed.

[Clutter in reply to Lily288]

Lily288,

Low iron and low ferritin can make it difficult to tolerate higher dose by making you feel hyper.

Ask your GP to check ferritin because it can take years to raise low ferritin and if you stop feeling fine and become symptomatic you will need to be able to raise your Levothyroxine dose.

[Lily288 in reply to Clutter]

Thanks Clutter and yes, I was checked for anemia and it's good.

[Clutter in reply to Lily288]

Lily288,

You can have low iron and low ferritin without being anaemic. If your iron/ferritin test was done within the last 12 months ask your GP receptionist for the results and ranges or arrange to collect a printout.

[Lily288 in reply to Clutter]

Thanks Clutter, This is very interesting and I will take your advice. I'm testing taking a bit of a stronger Levo dosage this morning...instead of the 50 mcg, I upped it to 3/4 or 75 mcg of my usual 100mcg that I've been taking for little over a month now.....I will return with result later...

[Eddie83 in reply to Lily288]

This is exactly how my body behaves. Take enough T4 to try to get euthyroid, and I get hyper - can't get my TSH below 4. But with T3-only or T3+T4, everything is golden. My nutritionals are good.

[Lily288 in reply to Eddie83]

Eddie83, What is euthyroid?

[Eddie83 in reply to Lily288]

"Euthyroid" refers to the state in which you are getting just the right amount of both thyroid hormones for maximum wellness. That is, you are neither hypothyroid or hyperthyroid.

[Lily288 in reply to Eddie83]

Thanks so much Eddie83... Very much appreciated.

Just to add ...I asked my pharmacist why I now need less levothyroxine and he told me that my TSH is high because my thyroid gland is making more natural hormone, hence the reason my body needs less or lower dosage of levothyroxine. However he couldn't or found it odd that my usual dosage of 100 mcg makes me feel sleepy or tired as well, because the amount of calcium or potassium used in the pill is such a minute amount that it should not cause drowsiness but I have to wonder about this. On a lesser dosage of 50mcg, I don't feel sleepy or drowsy. Not so much anyway.... I'd appreciate your or anyone's take on this. Thanks so much.

[Scouser58]

The high TSH or Thyroid Stimulating Hormone,,,,,is the result of the T3 and T4 working, in the way they do and then this has effect on the tsh, it does not need to be high,,,,,

I got the impression when my levo, was reduced with my tsh high that I needed to go to a lower dose from 200mg to 175mg per day,,,,,I will ask when I go to get my next results,,,as I have just had my TFT done in the blood tests,,,(TFT = Thyroid Function Tests),,,,,ttfn from Karen.

[Lily288 in reply to Scouser58]

Hi Scouser58... So here you're saying that your TSH reads high but like me, you need a lesser dosage of Levothyroxine? My TSH last reading was 8.9iu ...It is supposed to read between 4 - 5iu ...International Unit. I'm relearning terms...Thank you I have been on 100mcg for over 20 years and I am now taking only half of my Levothyroxine because I developed Hyperthyroidism symptoms...jittery etc... and so with taking half or 50mcg, for a little over a month now, I have been feeling much better. This morning I have upped my levo to 3/4 of the 100mcg dosage to see if I need more, less or stay same. Will let you all know later how it turns out.

Sorry I didn't add the result of the time I tried to up my my dosage to 3/4 or .75 mcg... It was or felt like too much so I returned to .50mcg... down to .25 and sometimes upped it to maybe .30mcg. I mostly feel good on .30mcg.