GP determined to lower dose.: Hi mine is common... - Thyroid UK

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GP determined to lower dose.

MissDemeanour191 profile image
8 Replies

Hi mine is common to lots on here. GP wants to reduce my Levo. I've been on 125mcg for a while. High T4, T3 5, which is best it's been! TSH always under 1, which they dont seem to like.I have private medicals annually, always show sinus bradychardia, and Left Axis deviation, on ECG, however, GP is not made aware of this, unless I tell her! I know they think high doses of Levo are bad for heart & bones, but I exercise often, am 5 foot in height, 61 years old, and my BP at mo is good 126/78. Always had low resting HR, 53 this morning. So prob bradychardia as hypothyroid and exercise!

She's wanted me to follow regime of alternating dose 125mcg one morning, 100mcg the next for few weeks and then have blood done again...obviously to review and lower my dose! Why are they obsessed with this? And...is it good idea to alternate dose like that?

Any advise would be appreciated.

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8 Replies
SlowDragon profile image
SlowDragonAdministrator

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

Is this how you did test?

Do you always get same brand levothyroxine at each prescription

What were actual TSH and Ft4 result and ranges

What vitamin supplements are you taking

What are most recent vitamin D, folate, ferritin and B12 results

Refuse to reduce dose at moment

Give her evidence of bradycardia

I have private medicals annually, always show sinus bradychardia, and Left Axis deviation, on ECG, however, GP is not made aware of this, unless I tell her!

request referral to endocrinologist of your choice or heart specialist

Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists

Ideally choose an endocrinologist to see privately initially and who also does NHS consultations so that might eventually transfer to NHS

thyroiduk.org/contact-us/ge...

elaar profile image
elaar

"I know they think high doses of Levo are bad for heart & bones". It's the FT3 measure that's the important one when it comes to the heart. A suboptimal FT3 increases vascular resistance, lowers heart rate and causes Ventricle issues ( I think the Left Ventricle is more affected from memory).

One way you can sometimes tell if a person has inadequate Thryoid medication, is that the pulse pressure (difference between the Systolic and Diastolic) increases compared to what they've had in the past. Hypothyroidism is one of relatively few causes that can push diastolic to 80 +. A difference of about 40 is considered normal.

It *may* be that your sinus bradychardia, and Left Axis deviation are caused by inadequate FT3?

greygoose profile image
greygoose

125 mcg levo is not a high dose! It's a pretty average dose, but some people take a lot more than that. You need what you need, not what doctors think you ought to need. Difficult to say anything for certain without the numbers - results and ranges - but I'm guess you're not a very good converter, and need at least that dose to give you enough T3 to make you well. T3 is the active hormone needed by every single cell in your body to function correctly, and that is therefore the most important number. The TSH is a very poor guide to thyroid status and pretty much irrelevant once it gets below 1. Refuse point blank to reduce your dose based on the TSH.

Catlover1981 profile image
Catlover1981

I am new here but just wanted to tell you what happened to me in October. I didn’t have any symptoms and just went to see my GP and she said my heart rate was 160bpm so she rang an ambulance and got blue lighted straight into resus! I have never been more petrified than I was. They tested my TSH and it was undetectable and my T4 was off the scale and did other tests and I was found to have supraventricular tachycardia taking Verapamil now. The cause was found to be taking too much Thyroxine which was a shock to me. I am now on 125mcg of Levothyroxine and much better but sometimes the GP wants you on a lower dose because of heart

tattybogle profile image
tattybogle

How low is your TSH MissD ?

if TSH is 0.04 or above you can use references from this post to put to counter any concerns about bones / heart : healthunlocked.com/thyroidu... useful-evidence-that-tsh-between-0.04-0.4-has-no-increased-risk-to-patients-on-levothyroxine-updated-new-study-does-show-small-risk

Yes, it is ok to alternate dose like that , it's a common way of prescribing dose adjustment smaller than 25mcg ( 12.5mcg tablet do exist , but are extremely expensive compared to 25mcg and are only made by one or two manufacturers , one of which is TEVA which some don't get on with)

Some people find they have no problems with alternate dosing , but others find it has unsettling effects and can feel the difference between days so they prefer to take half a 25mcg tablet daily to keep things feeling more even.

If you do agree to trial a lower dose , give it a good 6 weeks to see how it feels , don't make your mind up within the first few wks ... it will likely feel undermedicated at first , but in my experience of several small dose reductions due to high fT4 ,things sometimes start to gradually improve about wk 5/6 .. and sometimes after a few months i have realised i feel better on the slightly lower dose than i did before ,even though during the first 4/5 wks i would have been absolutely adamant that it was not enough .

On other occasions it has become apparent after 6 wks that the undermedicated symptoms were getting steadily worse , and on that occasion i told the phlebotomist at repeat test that the lower dose had caused total constipation for 3 wks with digestion ground to a halt, and i would be putting dose back up myself the next day regardless of what the new blood results said ...... that resulted in a call back from GP (9 am on a sunday morning !... so 'threatening to DIY' seems to be an effective way of getting a prompt GP consultation lol... My GP reluctantly agreed to put it back up.

This is one plus point of 'agreeing' to try a lower dose , if you agree and it's much worse ( preferably with a symptom that is indisputably a 'hypothyroid' symptom ), and they put dose back up and it fixes it again , you can refer any other GP's who might want to lower it in future to this evidence on your record . The big risk is that they refuse to put it back up by blaming the worsened symptom on something else.

trying a lower dose is always a bit like russian roulette (regardless of whether you just try it for yourself on the quiet , or GP reduces prescription officially) ~ if you currently function adequately , the risk is you have a couple of months where you don't .... and then another month or so to recover when back on higher dose .....nowadays i would only agree to trial a lower dose at a time of MY choosing depending on work commitments etc. choosing a time when being under-par for a couple of months wouldn't be too catastrophic . I occasionally try a slightly lower / higher dose without involving GP at all... sometimes it improves things .. sometimes it doesn't., but i'd rather try it on my own terms.

this post has a list of reference papers about thyroid / heart ...somewhere in replies . you may possibly find something of use in them, can't remember what's in there : healthunlocked.com/thyroidu... thyroid-disease-effects-on-heart-and-cardiovascular-system.

MissDemeanour191 profile image
MissDemeanour191 in reply totattybogle

Hi Thanks for your very informative reply! Yes, I too sometimes tweak dose myself. Only we know our own bodies, not the 'textbook' GPs. On lower dose, I have found in the past, constipation & fatigue, but think other things contribute to that too. Osteoarthritis, gluten, and the odd tipple at this time of year! Heart issues are in my family, but generally only when old age hits i.e Atrial fibrillation. I do wonder though, if grandparents, great grandparents had undiagnosed thyroid issues. My daughter is struggling to get her GP to listen to her health woes. I said, tell GP your mother & aunt are hypothyroid, she has, and they discount it. Blame hormones and fact she is a busy working mum!! Even though, in a private medical she was diagnosed with Right Axis deviation, and her resting heart rate was 43! Do these 'fit' watches they all wear these days give accurate readings??!

Catseyes235 profile image
Catseyes235

why oh why oh why don’t they want to listen to HOW YOU FEEL?? (As my former doctor did) I was constipated, frozen extremities , hair falling out, tired with weight gain etc . when different doc said IHad low TSH since 2000 no prob but thing meds had been reduced at some point but difficult to see from records. Check out my posts for what happened after 2018 when new keen doc thought he knew better! Good luck!

Dynaskia profile image
Dynaskia

You might have a problem with T4 to T3 conversion. Several months ago I had a high T4 and low T3. My endocrinologist reduced my levothyroxine from 100mcg to 75mcg and I was surprised to find that I feel much better on the lower dose. I also need to take 10mcg of liothyronine due to poor conversion and feel quite stable on this combination.

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