Low tsh Dr has lowered my dose advise please

[Timetraveler67]

Please kind people can you help advise me, I posted last week that because my tsh was 0.16 I was told to book a telephone appointment which I had today with a dr at my gp surgery. She had me on loud speaker and it sounded like she was a long way from the phone because I couldn’t really understand what she was saying but she told me she wanted me to drop down from 100mg to 75mg I explained that when I was on 75mg my tsh was 6.7 so my concern was it would go up again but she just kept repeating the advice is to lower the dose. This last week my thyroid feels swollen, I get horse and feel a lump when is swolow I asked her if I could possibly have an ultrasound on my thyroid but she said it sounds like I need to gargle with salt water buy some strepsils and to take a covid test. She’s re testing me in 6 weeks time. After advice on here last week to stay on 100mg I want to say I did try to plead my case but she was having none of it, plus not being able to hear her properly I finally gave in and agreed to drop to 75mg. I haven’t pursued buying t3 or seeking a private dr yet as right now I’ve no more fight left in me to do either. My question is will I have withdrawals dropping down to 75mg? Thank you x

[radd]

TimeTraveler67,

Oh poor you, you're having such troubles.

You could do what many of us do and just buy thyroid meds and self medicate, although I still don't think you need to top up with T3 before optimising Levothyroxine.

If you wish to buy some Levo just write a post asking members to advise of their Levothyroxine sources via DM.

[haggisplant]

Ask for a second opinion and to trial alternate days

[greygoose]

Did you try just saying no? Or tell her that you know the supposed risks - not proven - of a low TSH, but you are willing to risk it and take responsibility for continuing with the same dose? Doctors are not supposed to dictate to you, they are supposed to advise you. The last word should be yours.

[SeasideSusie Remembering]

She had me on loud speaker and it sounded like she was a long way from the phone because I couldn’t really understand what she was saying ..........

plus not being able to hear her properly I finally gave in and agreed to drop to 75mg.

How I would have handled this:

"I'm sorry but I can't hear you properly"

....

"Sorry, can you repeat that please"

....

"I'm afraid I can't hear you well enough"

.....

"Sorry, what was that"

.....

"There must be something wrong with the line, can you please ring me back because I really can't hear what you are saying"

.....

"Perhaps it would be better if I come in to the surgery to discuss this, I think you maybe need to examine my throat as it seems to be swollen and I can definitely feel a lump when I swallow".

Rather than reduce to 75mcg, just drop 12.5mcg and work out how to average 87.5mcg daily with the tablets that you have. Retest as planned. When those new results are in then confess to your GP that due to how unwell you were, and how high your TSH was, when you were on 75mcg before, then you decided that it was in your best interest to reduce by only 12.5mcg daily to see how things were on that dose, after all you know how you felt on 75mcg. Then take it from there.

Remember that the doctor-patient relationship is a partnership in your health, they are not there to play God and dictate to you, they should be listening to you and your concerns and you should be able to reach a decision which is in your best interest.

[Alex_p in reply to SeasideSusie]

Regarding your first advice, I would have done the same. My GP decided to do some tests one day and didn’t say they would include thyroid tests so I went there after taking the levo and lio and when I saw the results, FT3 was obviously above range. The note said to contact my GP. I didn’t because I knew what he would say. Also, they can’t lower your dose without telling you first (in my case he couldn’t lower the lio because it’s not on prescription but could lower the levo dose). I have spoken to my GP since and he hasn’t mentioned the blood test results.

[SlowDragon Administrator]

Previous post

healthunlocked.com/thyroidu...

Test was done in afternoon and dose levothyroxine only approx 12 hours before test

FT4: 21.5 pmol/l (Range 12 - 22)

Ft4 is 95.00% through range

FT3: 4.09 pmol/l (Range 3.1 - 6.8)

Ft3 is only 26.76% through range

So Ft4 was falsely high

Had you left 24 hours Ft4 would have been around 16-17

Have you had thyroid retested since this?

Refuse to reduce dose levothyroxine at moment

Say you were taking high dose biotin and that test result is therefore invalid and that you will get retested

Retest

A) make sure you test early morning, before 9am and last dose levothyroxine 24 hours before test

Working on improving low vitamin D too

[shaws Administrator]

If we've had a blood test, doctors seem to panic as they (wrongly) believe we've become hyPERthyroid due to low TSH.

I wish they were better trained and realise that a hypo patient feels better when TSH is around 1 or lower with both Frees "FT3 and FT4" towards the upper part of the ranges.

Our aim is a TSH of 1 or lower.

[Susieg1 in reply to shaws]

This is so good to know. My TSH is 0.70 range 0.40 - 4.50.

My FT3 is 3.23, range 2.30 - 4.20

FT4 is 0.81, range 0.80 - 1.80.

My doctor has agreed to let me try increasing my dose by 15 mg bringing it to 90 mg.

She is concerned that my TSH will be suppressed and that I will start to have hyper symptoms. Anyway, she has agreed to let me try as I want to bring my FT4 up.

[Timetraveler67]

My t4 is 21.5 and t3 is 4.09 Please can you tell me what you would do if you was in my shoes I really would appreciate your view thank you shaws

[SlowDragon Administrator in reply to Timetraveler67]

Those results were from an afternoon test and levothyroxine only 12 hours before test

[Timetraveler67 in reply to SlowDragon]

Yes that is correct but I thought it would be helpful but understand now the results are useless thank you for replying

[shaws Administrator]

Hi Timetraveler67 If you wish to draw a member into a post, put an @ sign before their name and they will be alerted. letters/figures will turn blue.

When you state your results always put the 'ranges' as it enables members to give a better response.

[Timetraveler67 in reply to shaws]

I will do this thank you

[tattybogle]

Hello again Timetraveller67 .Just been having a read back of your previous pots to remind myself .

I think that it IS fairly reasonable to try a very slightly reduced dose.

but given your history , i think a drop to 75mcg is far too big. As you say .. you already know that your TSH slowly rose to 6.7 on 75mcg ,so there seems no point going back down to that .. and also from past history, big dose changes mess you up, and you have always had to do it gradually anyway. So for the GP to suggest dropping by 25mcg in one go , well it seems like she's not paying proper attention to your history.

5 months ago :

"increased from 75 to 100mg 9 weeks ago after I developed a goyta and TSH was 6.7 T4 16.4 on 75mcg . New results are back , no T4 yet I have a T3 result!.

My TSH has dropped to 0.35 ( 0.27-4.20) T3 is 4.1(3.10-6.80 ) fT4 not tested."

Recent GP test :

"TSH 0.18 ( 0.27 -4.20) T3 is 4.2 ( 3.10-6.80) fT4 not tested ".

Recent medichecks test: (pm test ,12 hrs after last dose levo)

TSH 0.23 T3 4.09 (3.1-6.8) fT4 21.5 (12 - 22)

Ft4 is 95 %

Ft3 is only 26.76%

Even though you didn't do the medichecks 'correctly' .. it is not totally invalid .... 12 hrs is definitely long enough to avoid the worst of the peak from taking Levo. fT4 peaks from about 2-6 hours after taking the tablet .. by 12 hrs it would have fallen to reasonably close to where it would be after 24hrs . From the graphs i've seen in studies , i would estimate that perhaps it might have been about 20 if you'd done it at 24hrs . ( so still fairly high)

The TSH would have been a bit higher if you'd done it early am.. but you also have two GP TSH tests to compare it to , and they both confirm that the TSH level really is fairly low on 100mcg .

So.... we know your TSH is fairly low on 100mcg ..... at bottom of, or slightly under range

We know your fT4 is fairly high on 100mcg ..... perhaps a bit less than 95 % ,but still highish .

We know your fT3 is about 4 on 100mcg ... about 26% ish consistently.

I do have one thing to ask .... the last two GP tests (TSH 0.35 and 0.18 ) ...

what time of day were they done ?

Assuming they were early ish in mornings ,then i think i would agree to try a decrease in levo but only to 87.5mcg

Can you manage this for 6 weeks with the tablets you've got ? (eg 50 +25 + half a 25) or (75mcg /100mcg alternate days)

You don't have to discuss this with the doctor just now unless you want to . If you have enough tablets ,you could just reduce to 87.5mcg and tell them at the next blood test that is what you did.

or if you dont have enough of the right size tablets ,you could write to the doctor and say , "Following our phone call ,on reflection, i have decided i do not wish to reduce to 75mcg , but would be wiling to try 87.5mcg.

Due to my previous difficulties with large dose changes, and because my TSH is only a little below range, i think it is inappropriate and unnecessary to reduce my dose by as much as 25mcg .

Please would you provide a prescription for enough 50mcg and 25mcg tablet so that i can try 87.5mcg/ day. ( ie,.75mcg /100mcg alternate days )

As you are aware ... when my dose was previously 75mcg my TSH rose slowly to 6.7, which was over range, so i do not wish to go back to 75mcg at the moment.

Given my history , i believe it is more sensible to try 87.5mcg and then re asses my blood and symptoms."

[Timetraveler67 in reply to tattybogle]

Thank you, I’ve wrote all that down and will write to my Dr explaining what you told me to say. The last gp test done at the surgery was Early afternoon 1pm. I’m booked in for a another test on the 13th may at 8.40 am I will be following the rules this time definitely. I have a few 100 mg here of my levo ( I don’t get my New script Till Monday as they had to order it in as I’m on m.p. Brand). So I broke the 100mg up and took 3 of the quarters only this morning I think it works out right dose. Thank you for explaining step by step for me I appreciate it. Drs scare me, But I feel the confidence now to write the letter to her the way you have presented it. Thank you again

[tattybogle in reply to Timetraveler67]

3 quarters of a 100mcg tablet is 75mcg.

If you take a whole 100mcg tablet tomorrow then you will have effectively had two days of 87.5mcg .

You can alternate doses like this going forward of you want to .. it all ends up the same ,, it evens out in your blood so your daily dose is effectively 87.5mcg /day

So if GP test was 1pm then we know your TSH would 'really' be a bit higher than 0.18 / 0.23 if done first thing . We don't know how much higher , but it would almost certainly have been just in range at the very least... so that confirms what we thought .... there is absolutely no need to reduce as low as 75mcg , and if a reduction is tried it should be much less drastic ie. 87.5mcg

You could add that in your letter like this:

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

"my TSH was 0.18 at 1pm, which i know is the lowest point for TSH during the day.

It would have been slightly higher if tested in the morning, and may have been in range.

I have also had a private fT4 test done since your latest NHS blood test did not include fT4 , and it confirms my fT4 is currently in range "

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

You are stronger and braver than you think .. i can see you aren't the kind of person who is comfortable make a fuss.. but despite that: You've managed to get them to change your brand and you found one that made you feel better than Wockhardt, despite them (wrongly) insisting "there's no point ,they are all the same " and making you feel silly for asking.

You've managed to get them to abide by the guidelines and prescribe the same brand consistently, despite them (wrongly) insisting "we can't do that, it's not possible, it's your problem .. go away and sort it out with your (rude) chemist " and making you feel silly for asking.

Don't be scared of Doctors ... next time you are faced with a bossy, overbearing GP or chemist , who is trying to belittle you to get you out of the door or off the phone .....just think to yourself .. "You know ... i've got Tea Towels that are older than you"

You don't have to be clever enough or quick enough, to know all the answers when they are trying to blind you with science .. most of the time they are bullshitting anyway and most of then wouldn't even know what a deiodinase was or how to spell it. (it is what converts your T4 into T3... by removing one iodine atom ... de --iodine --ase )

All you need to remember is that:

you know how you feel on a dose, and a brand , and with a dose change.

you believe yourself .

you have as much common sense about the next step in your treatment as they do .

you treat them with respect , you have the right to be treated with respect in return, and that goes for your opinions on your dose too.

you have as much imput into your dose decision as they do , it should be decided together , not dictated.

you wouldn't dream of making them feel humiliated in public, and shattering their confidence ..... so it's not OK for them to do it to you .

During that last phone call .. the reason she kept on at you so long about going down to 75 is that she needs you to 'agree ' .... it is quite hard for them to insist on a reduction (or increase) if you say it's 'totally against your wishes.'.. because they know they are supposed to take your views into account ,and they know your treatment is supposed to be agreed, not dictated ...so they keep leaning on you till you 'agree'.

If she could have dealt with you more quickly by just saying "i've reduced your dose, and that's that !..." she would have.. but the fact she kept 'leaning on you' tells you she doesn't want to insist , because it puts them in a tricky position if they start forcing you to do things you don't agree to ... you can guarantee that on the records for that phonecall , she will have written "Timetraveller agree'd to reduce dose to 75mcg"

You actually have more power than you realise ... in future, if you are being leant on , just say "No thankyou , i've considered what you say, but that is not what i wish to do at the moment .. i'm happy to review the situation again in a few months if you are concerned , but for the moment i do not agree to you reducing my dose to # i wish to stay on # " .... and then wait ....... i bet you 50p they will say "oh ... ok then we can leave it at that for now , i''m not happy with you decision because i think your head will explode and the sky will fall in ... but it's your decision .. i'd like to review your bloods again in # months ."

[Timetraveler67 in reply to tattybogle]

I have made notes of what you said to say, she will be very angry But I’ll do it anyway because you have encouraged me to be confident by explaining things like this to me. I may feel better on a reduced dose I felt so ill on 100mg but just kept praying the next day I’d feel better, but instead each day I just felt worse. If it helps you I’m 9 half stone so does that tell you if 100mg is correct dose for me? Can you tell me please thank you for taking time to explain everything x

[tattybogle in reply to Timetraveler67]

You're very welcome

7 stone 7lb = 60 .33 kg

estimated dose calculation used by NHS is 1.6 mcg Levo per kg weight

60.33 x 1.6 = 96.5mcg /day

So even though this calculation is only a very rough guestimate of the dose that someone might need , it suggests that while you might well need a bit less than 100mcg ..... the 75mcg she is suggesting is probably too low .

So that's even more evidence that 87.5 is a better idea than 75mcg

and you can quote the "estimated replacement dose of 1.6mcg Levo per kg " as it is written in the NHS thyroid treatment guidelines.

[Timetraveler67 in reply to tattybogle]

can you just confirm something please - 100 mg every other day is that what you meant? Im writing the letter by hand as no printer hopefully I’ll finish it tonight and hand it in to the surgery tomorrow. I want to thank you sincerely for all your help and advice

[tattybogle in reply to Timetraveler67]

I mean take 100mcg one day/ 75mcg the next / 100 /75/ 100 / 75 .... and so on = 87.5mcg a day

~ For the 75mcg days you take one 50mcg tablet + one 25mcg tablet =75mcg

~ For the 100mcg days , you take one 100mcg tablet =100mcg ... (or you could take 2 x 50mcg tablets )

So .... ask your GP to prescribe some 50's and some 25's (and possibly some 100's)

and to write "alternate day dosing 100mcg / 75mcg" on the prescription .

For each 28 day prescription for 87.5mcg they will need to prescribe :

14 days of 100mcg : 14 (100mcg) tablets. (or 28 (50mcg) tablets)

AND

14 days of 75mcg : 14 (50mcg) tablets , and 14 (25mcg) tablets

you could of course take exactly 87.5mcg each day by taking ( 50 + 25mcg + half a 25 ) every day ... but that involves faffing about and cutting a tablet in half each day , so most people think it's easiest to alternate 100 / 75 / 100 / 75 to get 87.5 .. just get yourself a weekly pill dispenser box and put the right pills in ready for the whole week so you don't forget what day it is

[Timetraveler67 in reply to tattybogle]

Thank you so much you’ve explained that brilliant For me x

[Timetraveler67 in reply to tattybogle]

I’ve got my new tsh results I hope you can advise me please. Tested 13th may 8.80 am fasting for 24 hours as advised. TSH 2.15 ( range 0.27-4.20lU/L) Please can you help and tell me if this is ok I appreciate you thank you x

[tattybogle in reply to Timetraveler67]

hi again Timetraveler67

a) what dose have you been on (87.5mcg ?... eg 100 /75 alternate days )

b) how many weeks on new dose when these bloods were taken ?

c) how do you feel ? is it any improvement /or worse, than 100mcg was ?

it looks like the latest test might have only been 4 or 5 weeks on lower dose .. which is a bit too soon for TSH to be settled yet ..and it's also a bit too soon to really know how you will feel on lower dose ... did they not do an fT4 ?.....

[Timetraveler67 in reply to tattybogle]

It’s only been 5 weeks on new lower dose of 87.5 I take 100 one day and 75 the next day like you suggested. My Dr made the blood test appointment and I wasn’t thinking it was too soon until you just mentioned it, now I realise I should have cancelled and rebooked my appointment for maybe 7 weeks. I don’t feel any improvement in symptoms yet but want to ask you is it possible I have withdrawals even though it is only a small drop in meds? I’m asking because I feel like I’m withdrawing As my symptoms Are like when I came off some antidepressants years ago ( crying and feeling despondent) Or maybe I’m just overwhelmed by it all- I don’t know. Can you please advise me the next step to take please thank you I really do appreciate all the help you give me x

[tattybogle in reply to Timetraveler67]

my experience of reducing from 125 to 112 was that if you'd asked me during the first 5 weeks , i would have said i felt definitely undermedicated on the lower dose ... but after weeks 5/6 there was a very gradual improvement .,, quite subtle , but by week 12 i was really sure i preferred the lower dose .. i realised i was sleeping better than i had for ages . As for the withdrawal type feelings ... i do think there is a bit of a swing too far the other way for a short time when we reduce a dose while the body rebalances itself .... the first few weeks i became a bit constipated ,as though the dose was too low ... but then that started to improve again by itself .

So for now i would just say .. relax and give it a bit more time .. re-asses how it feels after 8 weeks . you may be feeling a a bit improved/ more settled by then.

i've done a few small changes of dose in the last 3 years and i found all of them very unsettling (physically / mentally / sleep wise /appetite / bowel habit etc etc) for about the first 5 weeks .. after that thing's either got worse or started to get better , depending on whether the dose change was right or not .

obviously it's more helpful if you assume it's going to get better over time .. that helps you relax and just wait a bit longer without worrying .

[Timetraveler67 in reply to tattybogle]

Thank you! Yes that sounds like a good plan and I can’t thank you enough I’m going to stay positive and reassess In 8 weeks thank you for explaining It all to me because I am sleeping better and that in itself is a big improvement for me so I will stay positive everything will get better eventually x

[tattybogle in reply to Timetraveler67]

. You're welcome , come back and let us know how you feel in another few weeks

[Cat___]

In my experience:Never let a GP manage your condition. If you haven't been seen by an Endocrinologist do so, and, if you get the right one (!), they are much more open to managing a suppressed TSH. My Endo is currently allowing me to be stable on TSH 0.05mIU/L, FT4 16.4 pmol/L, FT3 4pmol/L in the long term and I feel very well on it.

[TSH110]

You can simply refuse a reduction by just saying no I do not agree to it and not budging, she sounds appalling. A TSH of 6.7 is a disgusting target for that tom fool to aim for. Is there a more sympathetic doctor at your practice to whom you could appeal? I’d avoid her like the plague in future the patronising, cloth eared, incompetent. I agree with others here a small decrease might be the way to go, but how do you feel? Are you well on 100mcg or do you still have symptoms? We know you feel better than on 75mcg but do you feel properly better? The low T3 might mean you still don’t feel well even on 100mcg. I hope the inbetween option works for you.

[Timetraveler67]

I don’t feel well on 100mg I’ve not felt well for a long time but the last few months I’ve been feeling worse then I ever since this all began, every joint aches and hurts all over my body, crippling fatigue and brain fog which must show in my actions And so speech because lately if I’m in a shop someone will ask me if I need help- Very Embarrassing. Sadly There are no sympathetic Drs at my practice that I’m aware of I’m hoping the reduction will help me feel better thank you for your kind reply x

[beaubeau1121]

Hii am battling same…. if only I did not have bloodwork that always triggers the Endo giving me levo… rather than let me stay on T3 only. Even a small dose of Levo causes bloat, swelling & weight gain within a couple days.

I hope you can stay strong… as it is so discouraging when so many pop their thyroid meds daily without any thought/side effects. Like you, I am so grateful for those that have gathered on this site to lend their invaluable support & expertise.

Wishing you well!