I know this is likely to be a question which is normally asked after other important issues have been considered, but at the moment, your thoughts would be welcome. I’m 73 and have AF, controlled by ablation and Flecainide as and when required. Since the late nineties, my TSH has hovered between 0.01 and 0.05. (0.35 - 5.00). T4 is has always been in normal range but since 2012 it has progressively increased from 17.9 pmol/L to 20.8 in April this year, but it has now dropped to 16.6 (9 - 22 pmol/L) and T3 has dropped from 5.9 this April to 4.7 (2.3 - 5.1). Se thyroid peroxidase Ab conc was recently checked for the first time at 0.05 ku/L (0.0 - 5.6). Since April, I have been taking 5mg Carbimazole which my Endocrinologist says is the reason why all readings are now in range. He has suggested that I should consider radioactive iodine treatment and is concerned about the risks of remaining on Carbimazole long term and says the T3 levels are likely to increase again, as soon as I stop taking the medication. In turn, this could have an adverse effect over time on my AF and my heart in general. He has explained the risk that the treatment could cause under active thyroid but better that, than returning to over active because it is easier and safer to control.
Long winded...sorry, but at this stage 2 questions:
1. Is it be normal for the Marsden to carry out their own consultation and checks first before administering the treatment or will they just follow the instructions of the Endo.
2. Do you well informed people agree with the logic and the treatment plan or do consider it to be too soon for what sounds quite drastic treatment.
U mentioned also in your previous post that the endo checked and there's a goitre.
If there are active nodule/s and this could be a cause of your high thyroid levels, you could consider Radiofrequency ablation therapy to shrink the nodules rather than destroying or cutting out your thyroid. For Radiofrequency ablation therapy, you have to be assessed for suitability.
Thank you ling for taking the trouble to check my earlier posts. I’m fairly active on the AF forum, but I have to say that I find the detail involved in understanding and treating the thyroid quite challenging. If the thyroid receptor test is something which fairly obvious when it’s carried out, then the answer is know, it has not been done! Yes, he said there was evidence of a goitre back in April but I don’t know if this would reduce if the levels become stable but there were no further checks carried out last Tuesday.
Radiotherapy ablation has never been mentioned but I understand there is to be a further consultation at the Royal Marsden but I don’t know whether they will just follow the advice given by the Endo or if they may suggest other options if they feel they could be better. I like my Endo, he is straight talking and appears to know his business but you hear so many comments in this forum which imply that many are lacking in expertise. I’m just hoping that mine is not one of them and that the visits to the Royal Marsden, a renown and famous cancer hospital in Surrey, will provide we with a bit of a safety net!! Thanks for your input, it’s always appreciated but desperately need my bed now.....maybe more info in the morning....good night.
I had read with great interest your last post re another ablation. You are indeed very knowledgeable re AF. I hope to learn from you. For a certainty, you will get there with the thyroid as well, since its closely linked to the AF. Don't fret too much over it as anxiety is made worse by the hyperthyroid condition, even if it's under control.
I wonder why the endo didn't test for Graves? In fact, I wonder why there's not more being done to find out the cause of your hyperthyroidism. Is there not a need to know? Will that not help drive treatment and in turn help with reducing the AF occurrences?
Since you are going to the Royal Marsden, maybe you should have the testing done there?
One last thing to add -
Your first post -
"He has explained the risk that the treatment could cause under active thyroid but better that, than returning to over active because it is easier and safer to control."
Managing hypothyroidism is not necessarily easier. It depends very much on the individual as you can read from the many posts here.
But it could help with controlling the AF? I'm not sure about this if you have existing AF. If you have a good cardio or EP, you should check with them before deciding on something huge like radioactive iodine therapy or a thyroidectomy.
Can't answer the first question, I guess they will take the endocrinologist's advice.
Looking at your earlier post you were taking 125 mcg levothyroxine. It seems strange that they don't just reduce your levothyroxine dose rather than prescribe carbimazole also. (Are you taking 5 mg three times daily or just 5 mg once daily?).
Without getting into deep complex details your fT3 is most likely high because your fT4 is high. In these circumstances the body changes the way it converts T4 to T3 (type-1 deiodinase for the technically minded) which is a more defensive form of T3 loosely speaking. This is less harmful than T3 directly from tablets or T3 from a thyroid under attack from Graves' or Hashimoto's.
If as it seems likely your highish fT3 is due to highish fT4 then I can't see why they would want to disable your thyroid, either with RAI or surgery. Indeed your thyroid is unlikely to have much activity as you have been on levothyroxine for some years. The fluctuations in fT3 and fT4 that you have are quite normal for both healthy people and patients on levothyroxine. Thyroid hormone levels vary this is how the body responds to varying needs.
It is possible that your fT3 and fT4 have risen in recent years because you have got older, we seem to need less hormone in later years, perhaps because we don't clear it out so quickly. It's also possible that the recent reduction in fT3, fT4 was just a fluctuation, another test may show different results. It's also possible that your endocrinologist is using 'block and replace'. This technique is used for patients with fluctuating hormone levels that don't settle down, you completely shut down the thyroid with carbimazole (larger doses) and then fully replace the hormone. Has the endocrinologist given any clue as to why they think your thyroid is erratically producing hormone? Have they found any elevated antibodies, signs of a goitre or thyroiditis? Have they scanned your thyroid? It seems very premature to recommend RAI, there isn't a problem with continuing carbimazole for a long period (if indeed you need it).
There's no doubt that elevated thyroid hormones with a very low TSH increases the risk of AF by around a factor of 3x in the elderly. Whether or not your AF is a result of high thyroid hormone levels it makes sense to try and stay on the lowest hormone levels that you feel well on. My inclination would be to reduce your levothyroxine a little and see if it normalises your fT3, fT4. (Your TSH is unlikely to recover for many months as it has been very low for a long time, it may never fully recover). They can then also see if your AF improves on a lower levothyroxine dose. If you are OK on the reduced dose great, if not you will have to strike a balance between feeling a little tired and minimising any futher AF risk. You may be able to find a sweat spot with a small reduction in levothyroxine.
The important points are: -
1. Find out why they have prescribed carbimazole rather than just reducing the levo dose. Do they know what they are doing? Many endocrinologists have little understanding of thyroid disorders.
2. Make sure there is a good understanding of why your hormone levels have varied before drastic options such as RAI are considered. It would seem sensible to track your levels for three to six months.
3. If you need to reduce your hormone levels, either with less levo or carbimazole, see how it affects your AF and your day to day wellbeing with a view to finding a compromise if necessary.
Got a bit mixed up, it was Hylda who replied to your earlier post and mentioned taking levothyroxine . Didn't notice the time, I need to go to bed! Please ignore the bulk of what I've written above.
Given the results you posted earlier
TSH: 0.02 (0.35 to 5.0)
fT4: 20.8 (9.0 to 22.0)
fT3: 5.9 (2.3 to 5.1)
I think they should have put you on carbimazole at that time. I don't see why they can't continue the carbimazole for quite some time especially if your levels are well managed. If you levels are not under control then I would consider RAI or surgery. My preference would be for surgery but that would depend upon your general health and preference. I would try bringing your fT3, fT4 down to around mid-interval and then seeing if there is a beneficial effect on your AF.
I have no personal experience of Graves, although have had Hashi's flares. I also know of a hyperthyroid cat (my sister's) that was given L-carnitine - which worked surprisingly well... to extend her life considerably. L-carnitine is a widely available supplement and an amino acid that can enhance Carbimazole treatment. It works as a pump at a cellular level to control how much t4 or t3 enters cells. It is far less drastic than having RI and is very very good for the heart - look it up. Weird how some good vets know about it but endocrinologists don't.
Hi flapjack. I have graves desease and was on and off carbimazole for 12 years and felt pretty well most of the time then endo said I should have RAI treatment so thought they knew best and went ahead with it worst decision I ever made have had to fight tooth and nail to get the proper treatment ie: t3 which took me 8 yrs to get so now am fairly well but not as well as I was when I still had my thyroid so do lots of research and don't be bullied into it, I don't have AF so that could make it more complicated for you. But these are my thoughts.
First of all I think you need to have test to establish if you have graves desease.
2. I think your endo is rather quick to suggest RAI treatment, if you're t4 and t3 are now in range and have been stable on 5 mcg carbimazole (which is a small dose) and you are feeling well why can't you stay on it?
3. We don't all feel better on levothyroxine and it's not like my endo said " you just take a pill every day and you are back to normal" if only that was true.
4. Ask endo for proof that being on carbimazole long term causes harm, be surprised if they find evidence, normally if you have problems with taking it shows up in the first few months.
Suggest you read Thyroid hormone replacement- a counterblast to guidelines by Dr Toft: makes interesting reading about how guidelines on thyroid hormone treatment is not fit for purpose which dose affect the type of treatment endo's dish out. Sorry can't give you a link to it as only on my phone, but I'm sure someone on here will have it.
These are only my thoughts and obviously I'm not a doctor i wish you well with whatever you choose to do.
Did you ever have fine needle biopsy done on nodule, What were the pathology results? If not they should do the FNB first before they change your life by destroying your thyroid because being hypo is not any healthier then being hyper and comes with its own set of problems.
There are almost 2 million UK patients on Levothyroxine..... at least 10-20% require addition of small dose of T3 to make full recovery. Only 7000 patients currently prescribed T3 on NHS...and numbers continue to fall
Well I'm with Graves Disease, diagnosed in 2003 and given RAI in 2005, and now have to manage lingering Graves symptoms, and thyroid eye disease and hypothyroidism which were both caused by the RAI treatment.
I deeply regret this toxic, barbaric treatment, I was 56 when diagnosed and not even given any treatment options, and had I known about the consequences of RAI - I would have refused, simply because my vanity would have kicked in as to the risk of compounding eye issues and disfigurement that this treatment can cause in some patients.
A fully functioning working thyroid would be supporting you, on a daily basis with approximately 100 T4 - Levothyroxine + 10 T3 - Liothyronine.
Your body needs to convert the T4 into T3 sinceT3 is the thyroid hormone that the body runs on. and is said to be about 4 times more powerful than T4 and I read most people need and use about 50 T3 a day in order to function.
I just think it makes sense that when there has been a medical intervention and the thyroid surgically removed or ablated by RAI that both these vital hormones should be on the patients prescription for, if, and probably when they will both be required.
Some people can get by on T4 alone, some people at some point in time, simply stop converting the T4 into T3 and some people simply need both these essential thyroid hormones dosed and monitored independently, to bring them into balance and to a level of well being acceptable to the patient.
The current treatment option after RAI thyroid ablation is T4 - Levothyroxine only.
As you will see that in this case you, the patient, will " loose " approximately 10 T3 through RAI ablation and ultimately this means you have been down regulated, disabled even, by some 20% of your daily overall well being.
I read Primary Hypothyroidism caused by RAI treatment is more difficult to treat :
RAI is also taken up, to a lesser degree by other glands and organs within the body :
RAI is also known to trigger fibromyalgia like symptoms:
If I had my time again I would stay on the Anti Thyroid medication as suggested in Professor Tofts most recent article : Thyroid Hormone Replacement - A Counterblast to Guidelines :
It's on here somewhere, sorry, but I don't do cut and paste !!
Having been refused a trial of T3 by the NHS early last year I am now self medicating and buying my own thyroid hormone replacement and am getting back my life as best I can, staying away from the doctor.
The thyroid is a major gland responsible for full body synchronisation, including your mental, emotional, physical, psychological and spiritual wellbeing, your inner central heating system and your metabolism, and the conductor of all your body's orchestra.
Please do your research, all RAI does is get you off the hospital outpatient list as quickly and as cheaply as possible and back into Primary Care where they appear ill equipped and unable to even order and get actioned the appropriate blood tests with which to monitor a thyroid patient.
I appreciate your honesty and it’s good that you wish others to benefit from your misfortune.....I wish you well.....
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