Advice urgently needed: Endo reducing levo dose yet again based on flawed blood results.

[DizzyD]

Hello everyone I had thyroidectomy 1992 and since then been on levothyroxine. Roughly, 6 weeks ago levo dose was reduced by GP from 75/50mcg alternate days, to 50mcg daily due to T4 being over range. A very toxic iodine based medication I'm prescribed to treat afib, namely Amiodarone, is pushed T4 over range. I am really concerned because yesterday endo reduced levo from 50mcg daily to 25mcg daily. (Shock horror!) Acording to endo Amiodarone is still pushing T4 over range hence a further reduction of levo. Incidentally, this is the first I have seen endo in over 3 years.

I suspect thyroid blood results carried out by endocrinologist at flawed for several reasons:

1: Did not stop taking B complex supplements in prep to blood test

2: Took thyroid meds as usual on day of test at 7am

3: Ate food prior to blood test and drank coffee

4: Blood draw done at 3 30 afternoon

My question is, would the aforementioned points warrant thyroid blood test as flawed? If so what should I do?

Thank you for taking time to read this post.

[Lalatoot]

Dizzy the b complex would affect results but the others would not really.

[DizzyD in reply to Lalatoot]

Latatoot I have been led to believe via this site that a more precise result of thyroid numbers is achieved by getting blood test done 24 hours after last dose of levo and 12 hours after NDT.

[Lalatoot in reply to DizzyD]

thyroidresearchjournal.biom...

These graphs show the levels of hormones in the blood and how they fall away after a dose. The difference between levels 8.5 hours and 24 hours is there but wouldn't suggest that it would be significant enough to bring an over range ft4 result well into range. The graph suggests a lowering of ft4 by 1.5 to 2 numerically from 21 -22 to 20.

This is why I don't think that an endo will find the time after dose argument valid.

[DizzyD in reply to Lalatoot]

Ahhh thank you Latatoot so it appears I will have to accept that T4 is over range so pointless requesting a repeat test. Considering I have no thyroid can't believe levo dose is now only 25mg daily.

[Lalatoot in reply to DizzyD]

But biotin does skew results so you still have that reason. However if your ft4 has been over range for a while then the endo will probably just go by the other over range results and say it's a pattern of being high

[jimh111]

I think you need to sort this out with your doctor. As I understand it you take levothyroxine and NDT but have not informed your doctor about the NDT. Amiodarone has high iodine content which will play havoc with thyroid metabolism, whether or not you have a thyroid.

So, you are taking high doses of NDT to resolve symptoms of hypothyroidism and your doctor prescribing amiodarone to counter thyrotoxic effects which may or may not include atrial fibrillation. It's a recipe for disaster.

I think you need to be honest with your doctor with a view to replacing the amiodarone with something better which should allow you to substantially reduce your NDT. At the moment you are taking two competing medicines both of which contain lots of iodine.

[DizzyD in reply to jimh111]

No Jim I am not taking HIGH DOSE of NDT just a tiny dose half grain daily alongside the small dose of levo. Amiodarone dose was reduced from 200mcg to 100mcg when levo was reduced for the first time six weeks ago. Amiodarone now been stopped at my choice after a discussion with my GP yesterday. AFib I was diagnosed with 3 years ago had nothing to do with my thyroid status it was a one off attack. AFib really severe now and prolonged since I had covid late 2020. Amiodarone was prescribed after I was admitted to ACU for 3 days in April this year with life threatening afib. My troponin level was 82! Two days prior to being admitted to ACU an a+e cardiologist went against my appointed cardiologist wishes and prescribed Flecainide. I verbally pointed out to a+e doctor that my cardiologist did not want to me to have Flecainide until certain tests were done which would indicate that it was safe for me to be prescribed Flecainide. Despite my objections, the a+e doctor thought she knew best and more or less coerced me to take Flecainide. Well two days later admitted to hospital with terrifying AFib. Literally, I could have died. Hence, was prescribed Amiodarone as a last option while in ACU for 3 days.

Point is Doctors can make grave mistakes which has now contributed to me being prescribed extremely toxic drug indeed which plays havoc with thyroid levels. In comparison the very small amount of NDT I take will not trigger any AFib attacks like the horrendous one caused by a negligent doctor.

Really do appreciate your reply but just thought I would put you straight on a few points of error you have made.

Kind regards

[jimh111 in reply to DizzyD]

Please accept my apologies, I misread your previous post as taking 3 grains NDT instead of 30mg. This equates to 50 mcg levothyroxine, at least according to the manufacturer. So, on a worst case basis you were on the equivalent of 100 mcg levothyroxine which is quite reasonable.Although you don't have a thyroid (surgery? RAI?) there can still be remnants that can grow and secrete, so measuring TSH, fT3,fT4 is useful.

I've no knowledge of cardiology but I can't understand why they want to use amiodarone. Did the cardiologist perceive thyrotoxicity and want to lower your hormones? More likely it was an irrational decision.

I would try and contact your usual cardiologist and ask them to prescribe a drug that doesn't affect thyroid function as your medicines are fighting against each other at the moment. When I had a brief episode of asymptomatic AF I was prescribed sotalol which had no side effects. It may not be suitable for you but it's an example of alternatives.

Sorry I somewhat insulted you with my previous post.

[DizzyD]

Sincere thanks for apology Jim we as humans are prone to making mistakes. Totally understand. Jim Amiodarone is used to treat AFib... it lowers heart rate etc. Last resort drug. To my knowledge it is not used to treat thyrotoxicity. It fact this drug can cause thyrotoxicity because it can push T4 levels way over range or down in range. Prior to being prescribed this drug my thyroid levels relatively ok. Hence, never seen an endo for a long time.Thank you for advising me to see my usual cardiologist. Unfortunately, I have been discharged but I will be seeing a Fib cardiologist now who is the same doctor who coerced me to take Flecainide when admitted to a+e an experiencing such devastating consequences. I am not comfortable about seeing her in the future...axe to grind grr. If I ever get to see her am certainly going to tell her that she is very lucky that I did not take legal action against her. Why? Flecainide manufactures clearly state that this drug should not be prescribed to people with a blocked artery until extent of blockage is checked out. She knew I had a blocked artery and was waiting for test via my usual cardiologist to see if Flecainide was suitable for me to take. She got what she wanted in the end...I took the Flecainide and so ended up on worse possible drug Amiodarone which is very effective at stopping AFib but side effects are horrendous because it is so toxic. The half life of Amiodarone is beyond six months so I am in for a rough ride.

[Batty1]

This might be useful

uptodate.com/contents/amiod...

[Janeylou69]

Hi dizzy I would definately go and get retested because I dont normally take levo on the day of the test and I don't eat before it or drink coffee and I think you are supposed to stop B supplements 7 days before test all these things could affect the results xx

[DizzyD in reply to Janeylou69]

Sorry for late reply Janeylou. I agree with you regarding retesting. However, I am going to get Medichecks test rather than go through the hassle of trying to get repeat test via the endocrinologist. Have been getting Medichecks test for quite sometime partly because one is able to prepare for test (no biotin etc) and follow appropriate guidelines. Thank you

[Janeylou69 in reply to DizzyD]

Yes definately use medichecks to retest yourself because the endo probably won't want to do it ,I hope you get the answers you need ,good luck xx