Forgive me if the start of this seems unrelated to thyroid problems, but it is relevant. My main problems are cardiac. I am 83 and have Marfan syndrome, with a moderate distention of the aorta, leaky aortic valve, and slight hypertrophy of the left ventricle. To limit further damage my cardioplogist has said I must keep my systolic BP below 120 at all times. I have learned to do this pretty well over several years by controlling salt and fluid intake.
Now to the thyroid. I have been on 175mcg of levothyroxine for several years, despiteTSH effectively zero and T4 around 25, but if I drop the levothyroxine even slightly I feel like death. The cardiologist recognises this and has said repeatedly "Don't worry about TSH, take what you need to feel well as long as you get no symptoms." The GPs at my practice haven't been happy about this but have grudgingly accepted it.
But then about 6 months ago I started getting signs of atrial fibrillation, (a well known side effect of hyperthyroidism) and after a couple of acute bouts, I'm now in persistent AF. So of course, the GPs said "We told you so" and insisted on dropping my levothyroxine. I succeeded in dropping it by half a 25mcg tablet for about a month, followed by the other half, so I was now on 150mcg, and feeling reasonably well. But TSH remained too low and T4 too high, (but T3 has never been measured) so I'm still being pressed to reduce more. I reduced by another half a 25 mcg tablet but very quickly my BP went haywire - very unstable, over 120 most of the time and spiking up to 146. I have read that hypothyroidism is related to high BP and hyperthyroidism to low BP. So I wonder if I could be hypothyroid in spite of high T4 due to inadequate conversion of T4 to T3. The high unstabe BP puts me in danger of stroke or heart attack, or further damage to heart/aorta/valve, in spite of aggressive anticoagulants. And now I have no energy left at all. I can barely lift my hands to write this. My first problem is whether continuing persistant AF is a bigger hazard than the risk of stroke/heart attack. Of course I would like to go back to 150 mcg and feel better too. The second problem is how to persuade the GP to allow this.
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geoffharry
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what does your cardiologist say? Atrial fib in a person with marfan’s syndrome should be managed by a specialist. It is unlikely that your af is due to low TSH as the incidence of af rises in the general aging population and if you have had suppressed TSH for some time it would have likely presented earlier. Also if already on anticoagulants your stroke risk from af is reduced whilst your risk from raised systolic blood pressure is not. I would ask your gp to explain why he has increased your risk factors, not reduced them and suggest that full thyroid function testing including ft3 would be helpful in resolving this. I am not necessarily suggesting you accuse gp of negligence but ask for the full rationale behind their decision making. Good luck
Hi, Are you taking any addition medications that could have atrial fibrillation as a side effect, even over the counter ones? My father had atrial fibrillation & took antihistamines, if I remember right that speeded up his heart & added to his overall problems.
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.
If on Levothyroxine, don't take 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)
Many thanks to all of you for very quick response. I shall certainly ask GP to do full thyroid function tests including TT4, FT4, TT3 and FT3 together with the other related factors. Not sure how much she will authorise on NHS. Maybe I should ask for a referal to an endocrinologist. I shall also take care to hold off the levothyroxine dose on the day of the test till after the sample. I shall update with any interesting results.
I agree with Slowdragon that you need to check your folate, ferritin and B12. I got palpitations with low B12. I find my BP is LOW and taking my NDT raises it slightly. I've never had high blood pressure.
I would think that it you were overmedicated you would feel it elsewhere, high body temperature etc. I think your doctors were too quick to jump on the thyroid medication as the culprit. Go back to your cardiologist. Look to doing private tests if necessary although the consultant can certainly request FT3, B12 etc. I'm not convinced an endocrinologist will give correct advice TBH.
Sorry Jo, I don't understand NDT. Like you my main BP problem over the years has been low BP not high, particularly in the morning, then rising through the day. So I have a short acting BP suppressor which I take once a day at teatime. But since upsetting my levothyroxine my BP is all over the place and can change from 140 systolic to 98 and back again over a couple of hours.
Congratulations ! You sound like a very young 83 year young . Very articulate . Have you had your B-12 /folate ,Iron , Vitamin "D" and FT3 tested ? You might want to add Selenium for conversion purposes . Check your minerals . Magnesium is very important .
I find your surprise that an 83 year old should be "very articulate" and deserving of congratulations for being so, to be somewhat patronising!! My 85 year old brother (and others I know of similar age) thinks more rapidly and clearly, has a better memory and is more articulate than many younger people....please don't be deceived by a number!
I am taking simvastatin 40mg/day and apixaban 5mg 2/day. Apixaban is a more modern very powerful anticoagulant that doesn't require the close monitoring that warfarin does. just picked up your post on Prof Sultan. Will have a look.
I have been on simvastatin for many years. Apixaban only started ~4 months ago (replaced clopidogrel which I'd been on for years) after persistent AF was diagnosed. GP has just authorised increasing Levothyroxine to 150mcg. We'll see how that goes over the next few weeks.
I've never been diagnosed with afib but I have suffered with heart arrhythmia, and tachycardia (fast heart rate) for no obvious reason.
I have found that getting my iron levels optimised helps immensely.
Also, having thyroid hormone levels too low for me speeds my heart up and causes the rhythm to go a bit erratic. In particular I need the Free T3 level to be right for me - not too low and not too high. Free T4 and TSH have not been relevant for me in this respect.
Having good levels of magnesium also help.
If you've been on statins for years the chances are that you are deficient in Co-Q10 - statins deplete it - and it is essential for heart health.
Oops - I see Londinium has already mentioned Co-Q10.
Although I think the article is good I wouldn't suggest taking such high doses as are suggested. I usually take about 200mg per day, but occasionally take up to 400mg per day in divided doses.
Statins also block VitK2-MK7 - this vitamin works on clearing calcium from the arteries and soft tissues in the body - they use the same pathway in the body - this is why Statins can cause heart issues - see Research paper below ....
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