Do I need to lower my dose of thyroxine like the doctor wants too? Updated to add lab ranges where you see ******

[imsotiredallthetime]

Hi... I'm constantly on here reading and applying ideas on how to get the best out of my thyroxine..

I was diagnosed 2yrs ago with hypothyroidism after being ill for years. After a full year of tweaking my doctor and I settled on 125mg dose everyday.

September 2019

Serum free T4 18.6

TSH 0.32

Serum free trii. 4.9

I went for a pre op and they wanted to check my thyroid

September 2020**************

Serum free T4 17.8 (range 10.0-18.7)

TSH 0.16 (range 0.38-5. 5)

Serum free trii 4.8 (range 3.5-6.5)

The doctor lowered my dose 125mg alternate days 100 every other as he was unhappy with my TSH.. I know what a load of rubbish! I have no symptoms of over medication maybe a few I could be better but it's honestly the best I've felt in years so I didn't push for a higher dose!!

As it was a small change I just thought I would go with it.

Now November 2020 I'm expecting a phone call as its.

Serum free T4 16.3 (range 10.0-18.7)*****

TSH 0.15 (range 0.38-5.5)*****

Serum free Trii 4.8 (range 3.5-6.5)*****

I take iron 3 x 200 as my

ferritan levels are at 8 (range 22-322)****

Vitamin D high dose

B12 1200 dose

Vitamin C high dose

Im hesitant to lower my thyroxine with everything I've read but not sure if I'm doing the right thing... Just need some confidence or a reminder that I need to defend my health.

[hellybaybee]

Hey, I think you need the measures for ppl to advise... unsurprisingly no T3. How do you feel? 😕 are you getting your blood tests in the morning? I know most gps like to keep tsh around 1 (unless your my aunties gp who tried to get her tsh bang on 5 so she was basically crawling on the floor) I kind of think it’s a crap way to check anyway

[imsotiredallthetime in reply to hellybaybee]

Thank you

[tattybogle in reply to hellybaybee]

The Ft3 result is there written as 'serum free Trii =(triiodothyronine ).

but without the lab range to go with it, it's not much use yet.

[fiftyone]

I haven't studied all your figures cos I'm not a doctor but your headline caught my attention. Doctors have constantly tried to reduce my thyroxine dose. I've been on a high dose for years with very supressed TSH. But every time my T3 is measured it is within normal range, but highish. I feel very well metabolically speaking - no signs of overdosing so I am constantly having arguments with the powers that be. My current GP has now accepted that I feel well on a high dose. Recently I suffered heart palpitation problems and my high thyroxine was blamed, but this is theory is now in doubt as the palpitations stopped when I increased my intake of maagnesium rich food. I am fed up with doctors who sit looking at the screen to decide my health needs, instead of asking me how I feel.

[imsotiredallthetime in reply to fiftyone]

I agree.. Thank you for your reply

[grumpyold]

The way I understand it, put very simply, if your FT3 is within range, then you are not overmedicated.

You didn't include the ranges with your levels but at 4.8 I'm guessing that FT3 is within range and so, OK.

I wouldn't be letting my thyroxine be reduced on this basis.

Good luck.

[imsotiredallthetime in reply to grumpyold]

As I thought.. I feel great and it hasn't always been this way. I asked for more every 8 weeks over a year period. It was slow progress after being ill and I'm not kidding nearly 3 years. That's why I'm so hesitant. BTW this is a different doctor within the practice wanting to lower my dose.. Thank you for your reply.

[SlowDragon Administrator]

ferritan levels are at 8

Ferritin looks extremely low

Please add ranges on result

drhedberg.com/ferritin-hypo...

This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.

Ask GP for full iron panel test for anaemia

Essential to regularly retest vitamin D, folate and B12 levels too

all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

[imsotiredallthetime in reply to SlowDragon]

Morning thank you for your reply. My iron has always been an issue. Doctors give me for the 3 months take it off me 6 months I feel ill go back they give it again. I've been going round in circles for years. Treat the problem.... forget the problem... It becomes a problem!!

Very very interesting article above. If I'm I've understood correctly all my other iron levels appear normal..

TIBC 88umol (this is even higher than the range)

Serum iron. 19umol

Saturation. 22%

Ferritin 8ng (very low)

This what the article says......

..................................................................................

You should also have these iron values tested along with ferritin to get a more accurate picture:

Serum iron

% iron saturation

TIBC (Total iron binding capacity)

If you only check ferritin without the above three markers then you’re not getting the complete picture. If the above markers are elevated along with a normal or low ferritin, then it most likely isn’t a good idea to supplement with iron. If the above three are elevated then your blood and cells are saturated with iron and it isn’t being used properly by your body. This could be due to liver dysfunction, hypothyroidism, B12, or folate deficiency. You don’t want to dump more iron into a system that is overly saturated.

If however the % iron saturation and TIBC are low and your serum iron is normal or low along with a low ferritin, then it can be safe to start supplementing with iron. Have these levels checked every 6 weeks until all your markers normalize

..................................................................................

This could be due to liver dysfunction, hypothyroidism, B12, or folate deficiency.

So all in all.... This is what I got from it!

But not sure where to go from here!

[SlowDragon Administrator in reply to imsotiredallthetime]

Need ranges on these test results

humanbean is very knowledgeable on iron and ferritin

Low ferritin will tend to lower TSH

[imsotiredallthetime in reply to SlowDragon]

Sorry I added ranges to my original post and forgot about this will sort it tomorrow but from what I've seen on the Internet these results are not bad... Only my stores are really really low?! Very strange as to why my body's not using the iron in my blood only the stores.

******Interesting point too if low ferritin lowers TSH. Which would make sense because when my iron ferritin was 28 my TSH was 2!!*****

TIBC 88umol (this is even higher than the range)

Serum iron. 19umol

Saturation. 22%

Ferritin 8ng (range 22-322)

[SlowDragon Administrator in reply to imsotiredallthetime]

It’s vicious circle.....low iron/low ferritin linked to being under medicated and still hypothyroid.....low stomach acid

Low ferritin leads to low TSH

Levothyroxine dose gets reduced.....ferritin levels drop further

[imsotiredallthetime in reply to SlowDragon]

Hi I've found my out my iron ranges..

TIBC 88umol (range 45 - 81)

Serum iron. 19umol (range 9 - 30)

Saturation. 22% (range 15 - 50)

Ferritin 8ng (range 22-322)

I have a consultation on Thursday afternoon as my thyroid Is still....

Now November 2020

Serum free T4 16.3 (range 10.0-18.7)*****

TSH 0.15 (range 0.38-5.5)*****

Serum free Trii 4.8 (range 3.5-6.5)*****

Ferritan levels are at 8 (range 22-322)****

I take iron 3 x 200mg (since 15th Oct)

Vitamin D high dose

B12 1200 dose

Vitamin C high dose

No folate as of yet didn't know I should take it.. wasn't sure dosage?!

Im going to ask FOR...

Full thyroid panel

Full iron Panel

Vitamin testing, B12, b9, vit D

Coeliac test

Should I ask for anything ELSE? or should I do anything else vitamins wise etc....

I am prepared to pay for private tests if they won't do them. Ive been researching Thriva all weekend for costing.

Thankyou for your time and knowledge I appreciate it so much.

I spent 2 days in bed last week with start of my period and migraine no energy. I have a 5yr old!!

[SlowDragon Administrator in reply to imsotiredallthetime]

Clearly your Ferritin is absolutely terrible

It will likely take long time to improve

Do you suffer from heavy periods? Common hypothyroid symptom

Low iron tends to cause heavy periods too

humanbean is extremely knowledgeable about iron and ferritin - may hopefully pop along and comment

I would be surprised if GP will repeat thyroid tests so soon after last tests

Ask for vitamin D, folate, B12 and coeliac blood tests

[imsotiredallthetime in reply to SlowDragon]

What do you think it should be.... The max after 2 months of iron then they take it off me is 28 and within 2 months I'm back on it again as my iron is same as before normally 8 or 9 which is obviously way to low. Not to use health unlocked for research etc... Sorry I don't want to monopolise your time. I will definetly look later not even sure how to contact human bean?!.. Thankyou this forum is literally saving my life.

[SlowDragon Administrator in reply to imsotiredallthetime]

You need to continue working on improving ferritin levels until around 70

But important to regularly do full iron panel test when supplementing. Probably at least every 2 months (privately if GP won’t)

You can have high iron and low ferritin.

Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption

List of iron rich foods

dailyiron.net

Links about iron and ferritin

irondisorders.org/Websites/...

drhedberg.com/ferritin-hypo...

This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.

healthunlocked.com/thyroidu...

Thyroid disease is as much about optimising vitamins as thyroid hormones

Helpful post about iron supplements and testing

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

restartmed.com/hypothyroidi...

Post about iron supplements

healthunlocked.com/thyroidu...

And see last reply here from Humanbean

healthunlocked.com/thyroidu...

Post discussing just how long it can take to raise low ferritin

healthunlocked.com/thyroidu...

humanbean may pop along

[SlowDragon Administrator in reply to imsotiredallthetime]

Post showing why important to do full iron panel test to check iron isn’t too high

healthunlocked.com/thyroidu...

[Daffers123 in reply to SlowDragon]

SlowDragon, you so often include links and little nuggets of information which are really useful. I've just been reading the Hedberg info on iron etc., very interesting. I was also interested in your use of Propranolol to enable you to tolerate the required dose of Levo, something I'm considering.

So THANK YOU for all your help

[Ruby1]

So are you now on a reduced dose every other day? If so, how do you feel?

If you feel bad, I would go back and ask to go back up again. If you feel fine, stick with it. It’s better not to be over medicated if possible, but it all depends on if you feel well or not.

Because the tablets are only in certain sizes, they do sometimes alternate them - my sister does the same with her dose.

My TSH is usually below 1 and flags as low, but they never reduce my thyroxine. I once asked for it to be reduced. He reluctantly agreed but after a month or so, I asked to go back up again.

[imsotiredallthetime in reply to Ruby1]

Thank you for your reply.. My TSH has always been below 1. I did alternate as doctor suggested but TSH doesn't seem to of changed over the 6 weeks. When they ring I think might just ask to stay at my current dose for longer and retest in another 6 weeks. My iron should be higher then and I will get an up to date vitamin test and remember not to take my thyroxine 24hrs before.

[Hashihouseman]

Why is your doctors view a load of rubbish.?.... Your levels were on the face of it suggesting that exact thing, a small reduction in levothyroxine. Unless you had distinct hypothyroid symptoms that reduction would be logical and worth a trial, you may be getting symptoms from overly suppressed tsh or something else non-thyroidal...... it seems the GP is being reasonable and engaged in your well-being, unlike many others!. You seem to be converting t4 quite efficiently so lucky you I have to take 150 levothyroxine a day to get those t3 levels and that make me not well and pushes free t4 through the roof and tsh through the floor, which definitely isn’t good. Why not go with your GP for a while and if you experience clear and consistently hypothyroid symptoms you can revert back to what would therefore be right for you even if it seemed a little up the range to your GP. It doesn’t seem like anyone is attacking your health with this more trying to help by suggesting a logical development ... when my t4 is too high and my tsh is that low I feel a weird mix of hypo and hyper thyroid symptoms. Too much t4 isn’t as easy come easy go as some would suggest and the key to it is finding the balance in a vary narrow range for all three... ft3 ft4 and tsh.

[imsotiredallthetime in reply to Hashihouseman]

I meant it was rubbish basing a dosage change based on my TSH alone. When t4 and t3 within levels and he hadn't ever spoken to or treated me before. He rang and wanted to reduce it by a drastic amount(I felt anyway) I suggested 100...125..100..125 as a compromise. As it doesn't seemed to of done anything and I think he will want to knock it down to 100. I'm scared if I'm honest as I've been so so ill in the past and I honestly feel fine. I know more from this forum than I've ever known before and I'm just trying at this moment to help myself sorry if my words upset you it wasn't my intention.

Sorry to hear of your struggles. It's definetly not a one fit fits all and there are many different factors to finding our balance. Thank you for your reply.

[jgelliss in reply to Hashihouseman]

Dido. Well said.

[Ruby1 in reply to Hashihouseman]

Exactly what I was trying to say too 😊 If you feel well on the lower dose, it’s better to be on the lower dose 👍

[imsotiredallthetime]

Thankyou for your reply.. That's what I was thinking. I will try to reason with my doctor.

[Hashihouseman]

It’s not totally up to him is it and by the way your words didn’t upset me I was responding because sometimes over medication on t4 can cause real issues even if our test results are in the lab range. Those lab ranges are not healthy person ranges and your levels are looking some way off normal healthy range, which may be normal for you but surely it’s worth trying to adjust to most likely normal? On a trial basis. And you’re absolutely right to be cautious about how much you drop the levothyroxine thyroxine and todo it on a gradual basis.

[tattybogle]

Two questions ;

What was the lab range that came with the FT4 ? some go up to 14 , some 22, so your FT4 could be well within range or quite a bit over, depending on the range.

Were the last two TSH 's done first thing in morning or in the afternoon ? It may be quite a bit lower naturally if taken in the afternoon.

Here's my 'go to' for discussion and evidence for the 'risks ' of low TSH so you van make your own mind up ... if you click on the links in the First Reply to this post... healthunlocked.com/thyroidu...

....you'll find useful evidence and experiences on the subject

[silverfox7]

You really need to get your FT3 measurement plus without the ranges we can only guess where your readings lie-ranges differ from lab to lab so without yours we can only guess which isn’t good enough.