Change in blood test results.

[katbar]

Hi, I have had under active for twenty years, have been fairly stable over the years, today my doctor says i have to reduce my levo amount, i dont have any symptoms of being over, so reluctant to reduce, any advice. thanks

[SeasideSusie Remembering]

If you post your test results, with reference ranges, we can see why he says to reduce your dose. Also say what dose of thyroid meds you are taking.

It's late now so you may get no further replies until the morning.

[TSH110]

Refuse. Say you feel well and you are not willing to change what is right for you

[jaynebe in reply to TSH110]

I refused to change and was basically told I had no option I had to go onto a lower doseage even though I felt perfectly well.

[Hay2016 in reply to jaynebe]

He has to have a discussion as to why, you want him to justify his decision. Its not a dictatorship!!!! Post your actual results he’s basing his decision on. People will interpret them for you.

[katbar in reply to Hay2016]

I am going on holiday in four weeks time, he has agreed i leave it until i get back which in all will be about seven weeks, i have thought of taking different dose by alternating days, anyone done this.

[TSH110 in reply to katbar]

Yes it was not at all successful (125/120 mcg Levo) I feel better on same dose although it should not make a difference. Some forgetful types on line say they take the whole week’s worth on a Monday 😳

If you feel well why mess about when you could feel a lot worse? Did you get your results these might shed light on if your doctor has a point (unlikely if you feel well) or like a speight of others as reported on here, is playing god based on pure ignorance.

[TSH110 in reply to jaynebe]

I understood they cannot just demand your dose is reduced and you have the right to refuse. I found it useful that I was so forgetful i would loose my tablets or prescription and have to ask for a for a new prescription then I’d Find them but this sort of subtilise is reduculous we are not children. I decided to be really grown up and suspense with their services where thyroid treatment was concerned. I feel much better self medicating in NDT than suffering on levothyroxine of any

Demand they explain in writing exactly why if you feel perfectly well they want a reduction in medication so you can consider their opinion and make an informed decision not be bullied into potentially ruining your health. I’d put it in writing. Write to your MP if they are any good complaining of your patronising treatment with copies of all correspindence. It might put the wind up them

[Chippysue]

If he says it’s because your TSH is too low remind him that this is not your thyroxine level. Also where are these studies that say low TSH leads to osteoporosis or heart disease?? It’s harmful to be under medicated.

Do you stop taking thyroid medication prior to blood test? You can take them after blood is taken.

First do no harm - you are well but could have symptoms return if you lower dose.

Ideally your free t4 will be at the top of the lab range and free t3 towards the top, that’s more important!

[TSH110 in reply to Chippysue]

A copy of Dr Tofts statements would be the most powerful items to present to them to back this up. I doubt they either know or will bother to inform themselves but you have to hope....

[Baggiebod in reply to Chippysue]

Yes, I totally agree, but I have had personal experience of GP's who seem to know less than I do regarding Thyroid issues, who insist that they know that the TSH is the measure of whether you are correctly medicated! They then go on to spout their complete insistence that if your TSH is too low then you are at risk of Heart problems, and that they are not willing to jeopardise their job/reputation by prescribing a too high a dose against their better judgement! It is outrageous the way Hypothyroid patients are treated.

[Chippysue in reply to Baggiebod]

Do they inform people about the risk of osteoporosis when giving them steroid prescriptions? I wonder

[ozthyroid in reply to Chippysue]

yes, true, i was put on prednisolone for elevated liver enzymes last year because the specialist thought I had autoimmune liver disease ( I've already had Hashimotos for over 10 yrs & treated with 75 mcg levo), but he never mentioned to me that steroids will heighten my risk of osteoporosis (I knew this aleady). I've got osteoporosis in my lower back and hip! but was only osteopenic when I went on steroids. He said not to worry, it's only short term use of prednisolone that I needed to fix problem!! I do wonder about the long term effects of taking Levo which I've been on since 2006... I think these replacement hormones are high risk for developing osteoporosis.. not just the steroids. What do you reckon?

[TSH110 in reply to Baggiebod]

I wonder who is going to sack them don’t they have to emulate Harold Shipman for that (even he was allowed to get away with murder fur a very long time) or have the temerity to prescribe NDT. They would say anything to get their way in my opinionj

[katbar in reply to Chippysue]

Hi, I did not take levo before test, i will post results today, i have asked for them.

[Molly77 in reply to Chippysue]

No TSH nor T4 has an affect on your heart. TSH is an indercater for your pituitary to release more T4. T4 get converted in the liver to T3 if your liver is not converting properly then your body does not get the actual t3 that the graph reflects. Now too much T3 on the other hand can cause a racing heart palpitations chest pains. But, you would know way ahead of time. I was hurt before hypo. Too much, Too Little you will feel bad. That why it is so important for the patient to tell the Doctor when she is balanced not the other way.

[katbar in reply to Chippysue]

I thought it was too high, I am not very good on knowing what levels should be what, i have not had a full blood test involving t3, anti bodies etc, when i asked before for one i was told my t3 would be fine.

[Geniler]

Managing your health is supposed to be a partnership between you and your doctor. Mention the term ‘patient centred care’ and stand your ground on no changes to your successful self management.

[katbar in reply to Geniler]

Problem being the Dr will adjust my prescription which i have on repeat. I take 150 so the adjustment is to 125 I have'nt taken 125 for many many years. hope he is correct.

[Heloise in reply to katbar]

katbar, I think it's rare to lower a dose after many years. I had to double mine.

Also, changing daily doses will still add up to the same amount at the end of the week so being a storage hormone it will make no difference in the end. You order some T4 and be prepared to have it on hand if he goes through with this change.

[SlowDragon Administrator]

GP should not adjust dose just by TSH. Insist on testing of FT3 and FT4, Thyroid antibodies plus vitamin D, folate, ferritin and B12

FT4 should be near top of range and FT3 at least half way in range

All thyroid tests should ideally be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

Research into fasting or non fasting tests

ncbi.nlm.nih.gov/pmc/articl...

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

 please email Dionne at

[e-mail]

Professor Toft recent article saying, T3 may be necessary for many otherwise we need high FT4 and suppressed TSH in order to have high enough FT3

rcpe.ac.uk/sites/default/fi...

[katbar in reply to SlowDragon]

I did the test in the morning, i also did not take my levo until after, usually i always take it before the test.

[Aurealis]

Mistakes happen with the best of tests sometimes. Perhaps the test should be repeated to double check before risking your health with a dose change that might not be necessary.... and follow SlowDragons advice above, on not taking medication in few hours before test, not eating before test, and having test really early in the morning, when you have your second test. It’s not cheating, my endo maintains that the test is more robust and is not affected by taking doses on the day (I know he’s wrong about this).

[katbar in reply to Aurealis]

Thank you all for your input, I will get my results and post on here for a valued opinion.

[Hidden]

I would say NO do not reduce without very good reasons for doing so.

If you are feeling well there is no reason to be bullied into this. This seems to be the usual protocol for Doctors today, the parameters have obviously been moved.

I was made to reduce and have had the worst five years of my life, so many hypo symptoms that I was told would go away in time if I kept to the reduced dose, they did not.

I am furious that this has happened, before I was stable and happy, looked and felt well but now feel I am in a constant cycle of struggling to feel well again.

Do be careful and ask why this is necessary. All of the doom and gloom messages that I was constantly told about because of supposedly over medicating have not materialised, and I have been on this regime for over fifty years.

I personally believe in the here and now, no one knows what the future holds for any of us.

Good luck.

[katbar]

Thank you, i was told it i would have heart palpitations cannot control, and i will get excessive sweating, which is strange as i am always cold, but i do over heat in the sun when really hot, happier in the shade, , which i always have had since being diagnosed, it is like my body tempreture does not work. I have asked for my test results.

[Jackiez in reply to katbar]

This is exactly what happened with me, and I have the same symptoms regarding temperature control. The endocrinologist refused to allow me to stay on 150mcg, so I now have 125 of Levothyroxine and self medicate with 12.5mcg of T3. I feel better for it, but it's so wrong having to do it yourself.

[katbar in reply to Jackiez]

Hi you cannot get T3 anymore or has this changed.

[Jackiez in reply to katbar]

No, but I have a Greek friend who brings it over for me. Although she said it's getting more difficult to get now, without prescription😨

[SlowDragon Administrator in reply to katbar]

You need FULL THYROID and VITAMIN TESTS before even considering changing dose

Low vitamins are extremely common, leading to low TSH, high FT4 but LOW FT3

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies. Plus vitamin D, folate, ferritin and B12.

Essential to test thyroid antibodies, FT3 as well as FT4 plus vitamins

Private tests are available

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test,, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's

[TSH110 in reply to katbar]

There was a scientific paper that has got to the bottom of this poor temperature regulation posted yesterday, it has nothing to do with TSH they spout clap trap.

[1tuppence]

Hello katbar. I sympathise with you. My GP was also most concerned with my test results, and asked me to reduce from 125 to 100. I agreed, but won't agree again. My hypo symptoms started creeping back in within the first weeks. I went back to see him, and he agreed I could up my dose back to where I'd felt perfectly comfortable. ie 125 with the proviso that I had another blood test in 6 weeks.

Symptoms resolved......but... a few weeks later I felt very very tired. Deathly tired. Quickly exhausted. I hadn't felt that way since beginning Levo. I was concerned that something was seriously wrong with my health, but felt too tired to do anything about organising to go back to see the GP.

This went on for roughly a week..... and then I realised I didn't feel that way anymore. I felt back to normal. And I wonder if there was a deficit that needed to be made up? and being back on the right dose had gradually built up my levels.

Having experienced this there would need to be a cast iron reason, which made sense to me, for me to ever agree to reducing my dose again. I haven't been back for another blood test, as I feel well, and am happy to leave things as they are. My prescriptions are repeat. Should there be a problem with getting them, then I would go and see the GP for another discussion

You've been given good advice by others here. I would only add, arm yourself with as much info as you possibly can from this forum, so you understand where the GP may be coming from, and will have your responses ready.

[katbar]

Thanks i have asked for my test results by email, still have not received them yet, to post.

[Phoenix605 in reply to katbar]

You might want to ring and ask for them, receptionists are often quite obstructive when it comes to handing them out despite our legal entitlement usually spouting the GP will make contact if a problem or parroting ‘normal’ rather than giving numbers.

Ask to have your basic electronic records turned on, it is normally a simple signature and piece if ID, this will get you your test results much easier. This has been available for nearly two years but is not advertised, getting your full record access can be done but is not as straight forward.

Point out you do not and never have had palps or excessive sweating (ie a raised basal body temp not just sweaty when its warm!) on your current dose so you are not willing to reduce but will reconsider if they appear. The only way to prove over medication is high Frees, again refuse to reduce in the absense of such a result, if he is still being an ass dont stick with him, i saw 4 before i found one who could be gently educated without getting huffy!

Once you get your results put them in a new thread so they are seen or they may get overlooked so less good advice.

[dolphin5]

I agree with those who advise you NOT (edited as I missed out the vital word NOT) to refuse to drop your dose. If you feel well, then you are probably not overmedicated. I have always had a suppressed TSH (for 16 years), and I have also had many doctors telling me I was overmedicated.

After studying thyroid function and treatment, I discovered that I was in fact under medicated because my FT3 was always at the bottom of the range or below.

I also found out that conditions I thought I just had to live with were caused by my low FT3.

As far as I know, doctors cannot reduce your dose without your consent. So if they do it this way, you will need to fight your corner!

[TSH110 in reply to dolphin5]

Yes being over medicated is very unpleasant and not a place anyone would want to be

[Lucycatnaps]

I am in the same boat as you, was taking 100mcg daily and advised by my endo in a follow up letter to lower my dose due to a very low TSH last September after two low results. I felt well but he insisted my Thyroxine was lowered slightly to 75/100mcgs alt days. I started feeling hypo very quickly and by November struggled to get through a day without a nap. I then had a month of feeling slightly better but then in January I really felt tired and sluggish and a whole host of hypo symptoms came back like sore eyes, eczema on my feet and hands cracking, plantar fasciitis and generally unwell, a cold that recurred three times over five weeks late JanFeb. I did private blood test with Medichecks in Feb and my TSH had only slightly moved upwards but my T4 was now heading way down. I had another letter from endo in Feb requesting further bloods to be done in March and have finally received them today. They show my TSH is now in normal range and my T4 is at the low end of the scale, he is now happy. However I felt so rubbish that immediately after my test I went back on to my old 100mcg and after four weeks I am starting to feel more normal, my skin is improving and I am not having to go nap every afternoon. My point is I did what he wanted and my quality of life took a nose dive, it impacts on relationships and makes each day a struggle. I have now vowed that I am not going to reduce my dose ever again unless I feel overmedicated. If you feel well then stay on your dose.

[katbar]

Hi, thanks for getting in touch, i went and saw my own Dr today to ask for a more in depth blood test, he told me i did not need to change my dose and i have had the same result for many years and is not usually a issue. So all back to normal. If i feel different at any point i would reduce my does but would rather not.