Overmedicated?: Hi Everyone, I have Hashimotoes... - Thyroid UK

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Overmedicated?

millefleur40 profile image
19 Replies

Hi Everyone, I have Hashimotoes & am wondering if I am overmedicated on Levothyroxine. Over the past 27 years I have been prescribed mostly 100mcg per day. In more recent years they have added in 10mcg T3. Now my Endo has increased my Levo to 125mcg Mon-Thur +10mcg T3 & 150mcg Levo Fri-Mon + 10mcg T3. My blood results are better, suppresed TSH & T4, T3 higher in the range, but I feel terrible. Heart palps, higher bloodpressure, headaches, so fatigued cant get out of bed, dizzy, anxious, internal tremors.

Could there be an excess sloshing around & the Endo just keeps increasing dose to get better blood results?

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greygoose profile image
greygoose

Can you give us the exact numbers, please - results and ranges? Just telling us that the results are 'in-range' tells us nothing.

Could there be an excess sloshing around

Sloshing around where? Whatever is in the blood will show up on the blood test. We can have no idea how much gets into the cells, but however much it is, it's not 'sloshing'. And there's nowhere else for thyroid hormone to slosh.

Why does the endo keep adding more? Presumably because he considers that your results are too low - maybe you have a gut absorption problem. Or, maybe you have an absorption problem at the cellular level, which is keeping you hypo and that's why you still feel ill - your symptoms do sound hypo rather than over-medicated. Or, maybe your levels are too high for you as an individual. But, we can't have a clue without seeing the numbers. :)

millefleur40 profile image
millefleur40 in reply to greygoose

My last blood test was 09/03:-

Free T4 11.3 pmol/L (9.0-19.0)

Free T3 4.2 pmol/L (2.5-6.0)

TSH 0.008 miu/L (0.35-4.94)

greygoose profile image
greygoose in reply to millefleur40

Free T4 11.3 pmol/L (9.0-19.0) 23%

Free T3 4.2 pmol/L (2.5-6.0) 57.14%

Highly unlikely anybody would be over-medicated with those levels. In fact, your FT3 might be slightly too low for you. If they were my results I'd be asking for an increase in dose.

And, if you are under-medicated for your needs, that would explain your symptoms.

Maramonro profile image
Maramonro in reply to millefleur40

You brain obviously gives you a sign it’s too much—tsh is way too low—follow your symptoms and brain so lower your dose right away.

Lovecake profile image
Lovecake in reply to Maramonro

Millefleur40 is taking Liothyronine (T3). This will naturally suppress the TSH and therefore make the result of that not really important. It’s the FT3 result that is important for people who have some T3 added. We don’t usually want FT4 or FT3 over range. (There are people who need it though)

Maramonro profile image
Maramonro in reply to Lovecake

Never understood this logic—your brain gives your thyroid sign whether it needs more or less so you would think that is the best and most reliable assessment. My tsh always correlated with my needs- my t3 was always on the lower range and that is normal for me but I see here people keep advising others to push it to higher numbers which is not good for everyone—that is why range exist and is so wide as most people fall somewhere in between. That is why I am confused by disregard of tsh

Lovecake profile image
Lovecake in reply to Maramonro

I do agree that it’s a complete minefield.I also understand what you say. But some of us, even when adding a tiny amount of T3 end up with an extremely low TSH level.

If my FT3 was as low as 4.2 (as above) I’d not be able to get out of bed, regardless as to whether my TSH was 5 or 0.008

I’m no where near experienced enough to explain it all technically/properly.

I also understand that the TSH reading was originally meant for diagnosis and not continuous dosing/testing (someone may correct me). I was listening to John Midgley during a meeting/video once and am sure this was mentioned. (Again, someone may correct me if I’ve misinterpreted what was said).

All I can add is that people who feel fine with a higher TSH and lower free t’s must get less hassle from their GPs…………such is life 😶

☺️🧁

Maramonro profile image
Maramonro in reply to Lovecake

Exactly!! It seems very complicated because they are so many variables and body needs change all the time too. We are also all different. For example, I gain weight when hyper even though for most people is opposite. I know if my hair is silky and I gain weight that I am taking too much and that is also reflected by suppressed tsh, so for me this is accurate measurement. It is very hard to get to the right spot especially when u don’t have thyroid like me. Thanks for this—super informative!!!

tattybogle profile image
tattybogle in reply to Maramonro

That is why I am confused by disregard of tsh

I understand what you're saying, and i wouldn't want to totally disregard TSH.. it has it's uses . And i agree , 'more' is definitely not 'better' when it comes to thyroid hormone replacement.. often 'less is more' if we only give it a chance.

However the relationship between the TSH level and the thyroid hormone level that healthy people had 'before,'...... is demonstrably altered once they are taking Levothyroxine /other thyroid hormone replacement .

'diogenes' who posts on here, has published several research papers evidencing this shift .

People tend to end up with relatively lower TSH / relatively higher fT4.. and if it is levo alone they are taking, they usually end up with relatively lower fT3.

Hence you find many people who don't feel well on Levo until their TSH is very low in range or even below range.

There are significant problems with comparing the TSH levels of people taking thyroid hormone replacement to healthy people who don't.

Some people happen to end up with TSH that stays nicely in range.... but others don't.

Mine for example needed to be around 0.04 /0.05 ish for me to feel remotely OK on Levo, and only when it went below that to 0.01 ish was i actually overmedicated.. evidenced by by physical signs and symptoms, such as fine tremor in finger, weight loss, over frequent bowel motions etc, etc .

But when my TSH was 0.04/5 ish ( slightly below range) if my Levo dose was lowered even slightly i would end up suffering from chronic constipation , feeling too cold all the time , and suffering from extreme mental slowness etc .. if TSH was returned to 0.04/5 ish these symptoms would then resolve.

So it's not that we are ignoring TSH totally , it is that we understand that it doesn't always 'read' at the same level as it did when thyroid hormone was produced directly by a healthy thyroid.

The receptors in the pituitary which produce TSH are 'served first' when it comes to T4 and particularly T3 hormone... but just because the pituitary is 'satisfied' because it was served first, that doesn't always mean that all the other tissues in the body have enough T3 for their needs .. but the TSH level would say that they do.

There is a famous study done on rats showing how Levo alone does not restore all tissues to euthyroid status.

The healthy system has complex methods of increasing T3 level in different tissues to deal with this.. but we loose this ability to a large degree without a fully functioning thyroid, or when adding thyroid hormones orally in larger single doses than the healthy thyroids 'drip feed' of T4 with a variable amount of T3.

And there is a further element of regulation for different tissues involving the deiodinases, (which convert T4 to T3 inside the cells).. which is also somewhat compromised /messed about with when we take oral thyroid hormones.

So it's not just a case of "the TSH was 'right' when you were healthy, so it must still be 'right' when you take thyroid hormone replacement"

The system is so very complex that there are several mind bending reasons why sometimes it's now 'wrong'.

Maramonro profile image
Maramonro in reply to tattybogle

Yeah, it seems very complicated when out of balance because they are so many variables and body needs change all the time too. Very hard to get to the right spot. Thanks foe this—super informative!!!

shaws profile image
shawsAdministrator in reply to Maramonro

I think that the most important guideline is 'how we feel' on a particular dose. If we have no clinical symptoms and feel well, we're on the correct dose.

If our pulse is too fast and/or we don't feel well, we're on a bit too much so should reduce slightly when next dose is due.

jgelliss profile image
jgelliss in reply to millefleur40

Many symptoms can over lap hypo and hyper symptoms. Labs at time like this are very helpful if you need an increase or decrease with your thyroid meds.

Guost profile image
Guost in reply to millefleur40

Your TSH is similar to mine before. I lowered my thyroxine under advice from my Endo and those symptoms stopped.

SlowDragon profile image
SlowDragonAdministrator

Do you always get same brand levothyroxine at each prescription and same brand T3

Which brand?

Recommended on here that all thyroid blood tests early morning, ideally before 9am last dose levothyroxine 24 hours before test

On T3 - day before test split daily dose into 2 smaller doses, spread through the day taking last 5mcg of daily dose 8-12 hours before test

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

When were vitamin D, folate, ferritin and B12 last tested

What vitamin supplements are you currently taking

Please add latest results

On levothyroxine or T3 we always need optimal vitamin levels

Have you had coeliac blood test

Are you on strictly gluten free diet

millefleur40 profile image
millefleur40 in reply to SlowDragon

Hi, Not coeliac. I have three differeny mcgs if Levo - 25mcg, 50mcg & 100mcg plus the Liothyronine. I have recently spoken to my GP & chemist about using the same Brand each time. Got the usual speech about costs & availability. I even printed out all the latest Gov.uk & Thyroid UK info for GPs & pharmacists recommending same Brand. I dont even recognise the names now! I do pay for pruvate testing from the usual recommended places. GP & Endo do not accept the results. If low in vitamins etc, I buy the best, most absorbent & self medicate.

SlowDragon profile image
SlowDragonAdministrator in reply to millefleur40

Decide which brand levothyroxine suits you best and request/insist GP specify brand on all future prescriptions

Only 5% of Hashimoto’s patients are coeliac

But further 80% find strictly gluten free diet helps or is essential

It’s always worth trying…..3-6 months minimum

millefleur40 profile image
millefleur40 in reply to SlowDragon

Thank you for all your help, as usual 🙏

Charlie-Farley profile image
Charlie-Farley in reply to millefleur40

Hi millefleur40

Our surgery has a meds management team - I didn’t even bother with doc - I went straight to them - telephoned that is. Explaining I needed to stay on same brand as I had experienced differences and needed to reduce the variables to manage of my condition effectively. They sorted it- then I doubled up by getting a note placed on pharmacy records. All good.

From a scientific viewpoint, if you wish to have comparable meaningful results this should be encouraged not fought for. But we get back to the fact Doctors are medically trained, not scientifically.

I recognise the difference because I was scientifically trained and there is a big hole where development of critical thinking has been missed in training.

Guost profile image
Guost

They sound like the symptoms I was having and I was over medicated

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