Endocrinologist wants me to stop taking levothyroxine

[Sazzle1969]

Hello, I got an appt at the hospital with an endocrinologist last week. My GP has had me on 25 mg of Levothyroxine for about a year now. The endocrinologist says it will hardly be making any difference as the dosage is so low. He wants me to stop taking it for 3 months to "wash it out of my system" then retest my blood to get an accurate measure of my thyroid levels. I haven't had my thyroid tested for a long time now. He says I can then be properly medicated once they have accurate blood results. He says unless I do this he can't treat me. I'm nervous as worried about not taking it but he says it probably isn't making any difference anyway as the dosage is so low. I stopped taking it a few days back. I'm shattered at the moment but have been anyway for ages so hard to tell if it's the lack of medication or not. Any advice? Many thanks

[SeasideSusie Remembering]

Sazzle1969

It would be helpful if you posted some test results, with their reference ranges.

Looking back through your previous posts, in your last post in March here:

healthunlocked.com/thyroidu...

you said you were going to get tests done. What were the results? You said you were going to get bloods done, get a private prescription and retest every 6 weeks until you got it right. What happened?

It's been said many times in previous posts that 25mcg is less than a normal starter dose and that you should have had increases. Did your GP not do any testing to check your levels?

Has this endo done some new tests? I certainly wouldn't be letting him stop my Levo, regardless of how low the dose was, unless he had some current test results that backed up the need to do it.

I think if you looked this endo up on the hospital website you may find that he is a diabetes specialist, most of them are and haven't got much of a clue how to treat hypothyroidism. I think this one firmly falls into this category.

[Sazzle1969 in reply to SeasideSusie]

Thanks SeasideSusie. I did get more tests done, I will post results tomorrow. I don't feel comfortable not taking the Levo as I think it's a mistake - I'm going to start again. I don't think I'll get any joy with my GP upping the dose, so I'll probably have to go back to a private clinic. I stopped because of money - long story, COVID has pretty much destroyed my business and between trying to manage that and home learning with two GCSE stage kids has wiped me out. My health issues have been put on the back burner a lot but I'm really struggling so I know I have to get back on top of it. Problem is I'm not sure I can afford to keep paying privately and I really need this on the NHS but I just keep hitting a brick wall with it. The endocrinologist did acknowledge that I have thyroid peroxidase antibodies and that my family all have autoimmune conditions, so he says it is going to be a problem for me but is noncommittal about the detail of that. Needless to say, the endo lived up to my worst fears after reading about them on this forum...

[knitwitty]

I wonder if this endo takes his diabetic patients off insulin just to check If they need it !

[SeasideSusie Remembering in reply to knitwitty]

That's what I thought, beggars belief what they expect thyroid patients to do at times.

[Bluespots in reply to knitwitty]

Of course if they can get as many people off Levothyroxine the better for them, it's one less free prescription to give out. Multiply that by how many patients are borderline clinical thyroid and they have just saved millions......one free Levo prescription means all ones meds on prescription are free. Really feel of you all.

[knitwitty in reply to Bluespots]

I can see why they do it , but it's a false economy in my opinion because many undertreated or even untreated hypothyroid patients usually need a raft of other medications to cope with the symptoms of under/non treated thyroid.To name a few:

BP medication, statins , antidepressants, painkillers etc...

Also I'm sure under or un treated people will go on to develop other complications which will inevitably cost more in the long run.

I really don't understand the short sightedness of it all.

[Bluespots in reply to knitwitty]

I agree, since they have lowered my dose, I am almost bed ridden on the low dose days, terrible pain and cramps in my legs and lost all appetite. My cholesterol will start soaring again. Last time they did it with me, I ended up in hospital with brachycardia. This last dosing was after that so they have now put me back down to the dosing that put me in hospital, then emergency up dosing as I was so ill. Thanks for reply.

[greygoose]

This is an absolute nonsense! He doesn't need new proof that you're hypo:

a) he knows you have high antibodies, therefore Hashi's, therefore hypo;

b) he surely has your blood test results from when you were diganosed, and it's pretty certain that you didn't get diagnosed by mistake! That just doesn't happen because doctors are so loath to diagnose anyone.

c) he doesn't need to go back to the beginning and start again, he just need to increase your present dose now. That is the logical thing to do. I realise doctors rarely possess much logic, but this is just pure sadism and indlugence of his pathetic little ego.

d) a starter dose is a starter dose no matter what your 'accurate' levels are. If you're under 60, you start on 50 mcg and increase by 25 mcg every six weeks. You were started on the wrong dose by an ignoranct GP, but what, exactly is the advantage of 'washing it out of your system'? There isn't one. It's not as if you've had bad levo or something, he's going to be restarting you on exactly the same hormone. It's his desire to play games that is driving this, not his knowledge of thyroid. He wants to show the world who's boss. Well, maybe you should show him that it's you, not him. You're the patient, it's your body, refuse to mess around with it.

So, he can't treat you unless you obey his orders? Fine! You'll treat yourself - you couldn't make a worse job of it than him! Many, many of us find we get on far better without a doctor than we ever would with one!

[tattybogle in reply to greygoose]

He doesn't need new proof that you're hypo:

I think that's precisely the problem .. (unless there are more blood result that haven't been posted on forum ,) he hasn't seen any yet.

TSH 0.4 before taking any thyroid hormone.

fT3 bottom end of range, but still within range 3.6 [3.1 -6.8]

fT4 16 .4 [12 -22]

No raised TPO/TG ab's .

Tg Antibody <10.0 [0-115]

TPO Antibodies 31.0 [ 0 - 34]

GP only agreed to prescribe Levo after sazzle went private and started to take T3 (on condition T3 was stopped ).

So the whole thing sounds like it's been passed to an Endo to prove /disprove the need for ANY thyroid hormone prescription.

[greygoose in reply to tattybogle]

The OP feels worse since she stopped taking the levo. The FT3 was only 13.51% through the range. TPO antibodies were so close to the top of the range (and haven't been tested since) I think we can take it that she does have Hashi's. Any endo worth his salt would agree that this all adds up to a good reason to try thyroid hormone replacement. Of course he should be doing more tests, but not forcing her to come off levo at this point. I do not this this endo is worth his salt!

[tattybogle in reply to greygoose]

Agreed, to us it is obvious that trying (a proper) dose of thyroid hormone is perfectly sensible .... just saying the NHS don't have a 'box' to allow them to prescribe it with those results.. unless they consider another reason for the inappropriately low TSH with low end fT3.

[greygoose in reply to tattybogle]

NHS doctors are still allowed to use their discretion - if they have any. I still think it's sadistic to take someone off levo just to prove a point.

[tattybogle in reply to greygoose]

Mmm .. discretion , if they have any ... Mmm

Third drawer down ?.. nope.

fallen down the back of the filing cabinet ?.. nope .

I think observation skills, thinking, and curiosity (and compassion) are a prerequisite for discretion ...

Mmm .... that's probably a 'no' then

[greygoose in reply to tattybogle]

I think they probably do have some, but they're too scared of the effects on their careers to use it. Not something I can understand or have any sympathy for.

[thyr01d]

Hi Sazzle, I'd go with what your endo advises. Before seeing mine I was off medication and TSH was over 95 (which is coma level) but I was okay and started medication afresh. I'd guess you have more leeway with the TSH than I did as I'd already been hypo for around 40 years. Best of luck

[magsyh]

Watch what they're up to. My GP took me off my levo for 9 months. Kept making excuses and I could hardly function. My TSH rose to 5.99 but they are now refusing to give me levo back until it reaches 10. I have fallen out with them and they have told me if I'm not happy I can go private. They sent me a letter from an endo and it basically says because of my age (63) they will only monitor my condition so that's it they don't care how I feel and are refusing to treat me so I'm having to go it alone.

[knitwitty in reply to magsyh]

It beggars belief , it really does!

[HashiFedUp]

25 is a starter dose so yes it probably isn’t making much difference! Your Probably hideously under medicated. Six weeks should do it though. Not three months. Why don’t you compromise with that?

[tattybogle]

if (below ) were your result from before taking ANY thyroid hormone replacement. (2020 ? ) healthunlocked.com/thyroidu...

ENDOCRINOLOGY

TT4 92 nmol/L 59 - 154

TSH 0.44 [ 0.27 - 4.2]

FT4 16.4 [12.0 - 22.0]

FT3 3.6 [3.1 - 6.8]

Tg Antibody <10.0 [0-115]

TPO Antibodies 31.0 [ 0 - 34]

The endo want's to remove Levo to check your diagnosis . (before continuing to prescribe levo .. but only IF they see that without Levo you go hypothyroid)

They will only agree with diagnosis of 'hypothyroid' if your TSH rises above range once you are not taking any thyroid hormone (levo or T3). (unless they think you have a pituitary/hypothalamus problem ~central/ secondary hypo)

looking at those results from before taking T3 (or Levo ) it seem seems unlikely that your TSH will rise above range , so the chances of this endo agreeing to re-instate your Levo are very small . (unless they decide to think about whether you could have a pituitary /hypothalamus problem meaning you don't produce enough TSH )

The 3 months to 'wash it out ' has nothing to do with 'finding the right dose' .

It is to do with seeing if they think you need to take any extra thyroid hormone it at.

("3 months" is to allow long enough for TSH to rise after ALL Levo is out of the system , and it takes several weeks for the last little amounts of levo to be out of the system , due to it's long half life)

They won't be very interested in how you may feel/function for these 3 months .. they just see it as a necessary process you need to go through to prove( or disprove) a diagnosis of Hypothyroid.. before they are willing to prescribe thyroid hormones.

But if you want NHS to continue to prescribe your Levo . you don't have much choice but to go off it and then have 'that' argument about why your TSH isn't higher than 0.44 with quite low fT3. (or whatever your result end up as after coming off Levo )

ANTIBODIES .. i see you have 'some' TPOab , but have you ever had an over range TPOab result ?

NHS consider raised TPOab show an increased chance that you would (eventually) need treatment for hypothyroidism .... . but 'in range' TPOab will not influence them to prescribe levo . So this is why they are 'non committal' about the detail.

And even if they were over - range . they still wouldn't consider it a problem they could do anything about, until they saw some 'hypothyroid' blood results (over range TSH and/or under range fT4/3 )

[NIKEGIRL in reply to tattybogle]

I agree with everything u have just said. Well said.