Change to dosage after a long time

[Hannyg]

Should a thyroid that has remained static for 20 years all of a sudden go over active ? 175mcg for past 20 years but now they are reducing as they are saying it is overactive to 125mcg? Symptoms fatigue, constipation, depression, weight gain?

[pennyannie]

Hello Hannyg and welcome to the forum :

In short - no :

If diagnosed hypothyroid you can't " go " hyper or over active BUT it maybe that your doctor is only looking at your TSH blood test result and jumped to the wrong conclusion, which seems to be happening all too often.

You could be over medicated but after this length of time on the same dose I very much doubt this is what has happened, and your symptoms suggest your metabolism has slowed down too much now, with symptoms of hypothyroidism creeping back in.

Do you have any blood test results to share with forum members ?

It was also wrong to drop your dose by 50 mcg - all dose adjustments should be by 25 mcg only with a follow up blood test in 6-8 weeks time to reassess the new dose.

In order to know what is going on you need a TSH, T3 and T4 blood test all taken at the same time, ideally at an early morning appointment, prior to taking that day's dose of T4 and having fasted overnight and just taking in water.

The TSH test was originally introduced as a diagnostic tool to test for hypothyroidism and once on thyroid hormone replacement it is the T3 and T4 that should be monitored and dosed to, with the intention being that both T3 and T4 be balanced at around a 1/4 ratio T3/T4 and high enough in the range, to relieve all the symptoms of hypothyroidism.

If you go on the Thyroid uk website you can read around all things thyroid and what we can do to help ourselves and Thyroid uk are the charity who support this amazing forum.

[Hannyg in reply to pennyannie]

Thank you - I have just had a call from the doc as I asked to speak to him rather than the receptionist! He is adamant that my function is suppressed and therefore I have too much hormone. I asked re Hashimotos and he said that is only for people who are overactive and not me!

He was quite rude and said if you insist then you can reduce by 25mcg....I am going to do more research as it is just strange!

[pennyannie in reply to Hannyg]

Ok then :

Did he offer you any numbers and or ranges TSH: T3:T4 ?

Do you have online access and can see what he is referring to ?

Read up on here, other peoples questions and answers, and on the Thyroid uk website.

Please come back with any questions and take the 25 mcg prescription so your symptoms don't get any worse and until you feel able to hold a proper conversation, for which, you need to know what he is looking at to have taken this action.

Legally you are now entitle to copies of all your medical records.

[Hannyg in reply to pennyannie]

I did ask for details after your suggestion and as it was 5.59pm they asked me to call back on Monday. I will get the results from my last 4 tests and then upload them - thank you

[pennyannie in reply to Hannyg]

OK then, but start a new post with your next post as this is a rolling screen and you'll attract the Admins more easily as very rarely do they have time to look down through " old posts " - even if from a few days ago owing to the pressure to answer unanswered newer posts.

[helvella Administrator Thyroid UK in reply to pennyannie]

Admins have no special powers to answer questions!

The role is almost exclusively to try to keep the forum functioning rather than be experts or dedicated question answerers.

[pennyannie in reply to helvella]

I accept that Admins have no " special powers ' but they have more knowledge than the average person who comes on here looking for help and answers and places value ( maybe misplaced ) in there being Administrators who do appear to offer detailed information and well researched papers that maybe beyond another persons ability to find, in the first instance.

[SeasideSusie Remembering in reply to Hannyg]

Hannyg

He is adamant that my function is suppressed and therefore I have too much hormone.

If he's used the word "suppressed" it sounds as though he is just looking at your TSH and this has gone below range. TSH is not a thyroid hormone, it's a pituitary hormone. The thyroid hormones are FT4 and FT3 - these are the results that tell you if you are overmedicated. If these are in range then you are not overmedicated and there is no need to reduce your dose unless you want to due to symptoms of overmedication.

I asked re Hashimotos and he said that is only for people who are overactive and not me!

Well that's a load of rubbish. Hashimoto's is an autoimmune disease causing underactive thyroid; however, patients can swing between hypo and a false "hyper" when the immune system attacks the thyroid causing it to offload excess thyroid hormone.

Is this the GP you usually see?

Ask the receptionist for a print out of your results, don't accept verbal or hand written results as mistakes can be made, make sure you get a print out, the results and reference ranges (very important!) will be on there.

[Hannyg in reply to SeasideSusie]

Thank you - he wasn’t my usual GP and he did seem very defensive when I was questioning him. I will get a printout on Monday

[grumpyold in reply to Hannyg]

They often get defensive when challenged because they know they don't know what they are talking about and don't like to risk being "exposed". I had a massive argument with one GP at the practice when he wanted to reduce my 100mcg dose because my TSH appeared suppressed at 0.01 even though my FT3 was scraping along at the very bottom of the range. My TSH is always suppressed because I take Metformin.....shouldn't he have noticed this ? He didn't even seem to know that it's the T3 that is the active hormone.A lot of the time, we have to be our own physicians and stand up for what we know to be right.

Once you get your results, don't let them reduce your meds unless it is appropriate. I ended getting mine raised from 100mcg to 150 in incremental stages. If I had listened to that robot, they would have put mine DOWN to 75mcg. Frightening.

Good luck.

[Hannyg in reply to grumpyold]

Heavens above that’s crazy! Why in the US do they have Endocrinologists who deal with these things as routine yet we have a GPs who have no idea (I moved from my last GP as I had to explain to him the thyroid function). Does the NHS have them?

[grumpyold in reply to Hannyg]

I know! Crazy. I tried to join another GP practice after the argument I had, but because I live very rurally, there is no choice and I have to stick to the only one which covers this area.

Luckily, there is one nurse practitioner there and she is more knowledgeable than the doctors and she has the power to prescribe/ increase dosage. Without her, I think I'd be stuffed!

[TSH110]

They don’t sound like overactive symptoms to me. Ask for a print out of your results and post them here as a new post and ask for comments. Make sure no personal details are showing if you post a document with your results . If you feel well you are entitled to refuse a reduction in dose especially as you have felt well on it for 20 years. It is supposed to be a partnership with them, not them bullying you into a dose reduction without showing you the actual evidence as to why you need it, plus your symptoms suggesting quite the opposite it sounds as if you are under medicated . Ideally the TSH should be between 0.2 and 0.5 and free t4 and free T3 in the upper third of their ranges, tgry are unlikely to have tested free T3 the most important ine 🙄. Thyroid U.K. admin can give you an article in Pulse magazine by Dr Toft an eminent endocrinologist who states the above (and which many doctors are completely ignorant of) to show your GP to try and get the old dose reinstated. Once they reduce it it can be hard to do much about it. If they won’t play ball you could get a list of sympathetic doctors from Thyroid U.K. admin and try one of them, but it’s expensive of course.

Plus they are only supposed to reduce the dose in 25mcg increments and retest after 6 weeks not remove a whopping 50mcg in one go - they sound awful. Small wonder so many of us feel ill at their hands.

[Hannyg in reply to TSH110]

Thank you - I am going to see about private tests

[TSH110 in reply to Hannyg]

Good idea, then you know there you are. The full thyroid panels are very comprehensive there are a few companies to pick from on the Thyroid UK pages. Good luck with it ☘️🍀☘️

[tattybogle]

Hi , as you can see from my result on this post healthunlocked.com/thyroidu... ...thyroid hormone levels in the blood can raise even when you've been on the same dose for years, i've been stable on 150 mcg for about 15 yrs , and then following the menopause my fT4 results have started increasing, for no obvious reason .

So perhaps your levels of fT4 have now become higher, and that could indicate a need to reduce dose slightly if you also had symptoms of overmedication.

The other reason Doctors ask to reduce dose is because the TSH has fallen to lower than they would like, and they believe there are heart and bone risks associated with a very low TSH

So it it possible that once you know the actual results your doctor was looking at you may agree that a small dose reduction is sensible... or you may not ( the risks are relative and don't start until TSH is much lower than the level that Doctors panic about )

But what is certain even without knowing your actual result yet , is that reducing by 50 mcg a day is too much. and will make you feel significantly different (and probably not in a good way)

The doctors compromise of suggesting a 25mcg reduction when you stood up to him , is actually still bigger than it could be . It's perfectly possible to adjust dose by 12.5mcg and have effects on blood results and how you feel. And in my recent experience, one reduction of 12.5 may well have been an improvement, but a further reduction of 12.5 was a reduction 'too far' and left me constipated and pretty much sofa bound.

So first get hold of the results he want you to base YOUR decision on, put them on here and we'll help you understand what they mean. I would politely but firmly insist on knowing your results before you agree to reduce dose.

You need to know;

TSH (thyroid stimulating hormone)and lab range ie. 0.00 [? -?]

fT4 (free T4 ) and lab range ie. 0.0 [? -?]

if they haven't done an fT4, they are useless, but quite often they don't.

The most important result for deciding on overmedication is an fT3. Which the NHS will not have done. fT3 is the active hormone, unlike T4 which is inactive until it's turned into t3 within the body (levothyroxine is synthetic T4 )

[Hannyg in reply to tattybogle]

Thank you - I have asked for my results over the last year and have also asked him to explain what he is basing his decision on again in writing. There are other factors which have me spooked - such as my liver function as I had a gallstone in the bile duct 2 months ago and I read that can impact. I will def post on here.

[tattybogle in reply to Hannyg]

In case you want to get a head start on understanding the relative risks of low TSH before you get your results;

If you look at the first reply to this post; healthunlocked.com/thyroidu...

and click on the links contained in it , you'll find useful discussion and evidence on the subject.

hope it helps you make your own mind up . i think GP's just get the 'headlines', not the full picture.

[Hannyg in reply to tattybogle]

TSH 0.04 but no T3/T4 results

[birkie]

Hi Hannyg♥️They don't sound like over or hyper symptoms, I suffered with hyperthyroidism for 2 years before diagnosis. I had fast heartbeat, sweating, tremor, going to the loo more especially after eating, insomnia yes I was fatigue, the symptoms you mentioned were they when you were on 175mg or have they just started? Can you post your results as other members can help you with them.. ♥️♥️♥️

[Hannyg]

The latest results said TSH level 0.04 - no FT3 or free thyroxine

5/11 tests said TSH level 0.03, no FT3 or free thyroxine

[pennyannie in reply to Hannyg]

Hey there again :

So there is your answer : you are being dosed and monitored on just a TSH blood test result like most people in primary care, which is not sufficient information to dose adjust and monitor on :

Did you take the extra 25 mcg offered last Friday and asked for your " old dose ' to be reinstated immediately ?

What are your feelings now, and are things sorted ?

I think I must be telepathic to have known you would reply down here !!!

[Hannyg]

I ignored them and carried on with my old dose - I have spoken to a different doctor and I am having a face to face appt next week to discuss further.

[pennyannie in reply to Hannyg]

Ok then : good you have sufficient to top up with and hope the appointment goes well :

[pennyannie]

Please remember if you want to reply to somebody specific you need to use the reply button under their post - otherwise they are not notified of your answer to them.

If you reply to nobody in particular you 're expecting forum members to look back, at a previous days conversations, and generally speaking, most forum members, are focused just on the day ahead.

[Hannyg in reply to pennyannie]

Sorry! That serves me right for working and going on here!

[pennyannie in reply to Hannyg]

No worries -

You're lucky to be working and if no one tells you, how are you meant to know ?

So don't beat yourself up - we are here, but need to be " pinged ' ;

Technical term from someone who thinks cut and paste necessitates scissors and glue !!