Over the past year or so, I have slowly been reducing levothyroxine under medical supervision in progressive steps of 25mmg from 125mmg down to 50mmg . I am male and nearly 75 years of age.
After a 10 weeks interval of consistently taking 50 mmg to stabalise my metabolism, I received my TSH test results this week which seem now to be unexpectedly very high ... namely 17.8 H in bold, free T4 is 14, and free T3 is 3.7
The historical reason for reducing levothyroxine medication is my apparently adverse /negative reactions to this powerful medication.
I had been experiencing bizarre cardio related symtoms over a few years ... tachycardia , ectopics, flutters, missing beats etc ... all these horrible negative cardio symtoms have progressively disappeared in steps with each 50mmg reduction in levothyroxine. Currently I have become completely cardio symptoms free to my great relief.
Subsequently I had been optimistic that the new/ recent TSH test would have been positive and within normal range.
For information , when still at the 75mmg the TSH reading was 3.9 , now after 10 weeks at 50mmg the reading is 17.5 ... can anyone offer me expert opinion please?
I dread elevating my thyroxine levels as I fear all the adverse cardio symptoms will resurect again. Any wise thoughts please?
Thank you
JoeFran
Written by
JoeFran
To view profiles and participate in discussions please or .
As you approach the optimum dose, it is sensible to adjust doses by small amounts.
I consider 25 microgram adjustments to be pretty heavy-handed.
While it is wrong to base everything on TSH results, it looked as if 75 microgram dose was very close. I'd have suggested a reduction of no more than 12.5 micrograms a day. (Whether by alternate day dosing 50 and 75. Or splitting 25 microgram tablets. Or getting Teva 12.5 microgram tablets.)
Indeed, at least with hindsight, I'd suggest an adjustment of as little as 6.25 micrograms (using whatever techniques you need to achieve that).
If you were even tolerating 125 micrograms, ending up on less than half that seems unlikely. There are potentially many issues with excess levothyroxine. I'd have expected you to be suffering more than cardio issues if you were on twice the dose you need. If you see what I mean. For example, feeling hot, disturbed sleep, etc.
Thanks for your wise thoughts... and I shall follow your advice on dosage graduations... incidentally no cardio or overheating or disturbed sleep since reduced medication levels... though resting rate average in bed about 48bpm .. and left foot bid toe nail has significantly thickened since reduced medication to 50mmg. Otherwise I am symptoms free since my progressive and radical reduction in levothyroxin despite the high 17.3 TSH reading this week.
Often what might appear to be a 'side effect' of levo is actually an underlying vitamin deficiency. Unless we have OPTIMAL levels of certain vitamins we cannot use our thyroid hormone well.
Being hypo causes low stomach acid and in turn we cannot absorb vitamins from our diet properly.
Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost.thyroiduk.org/testing/priva...
There is also a new company offering walk in (includes free blood draw) & mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...
Only do private tests on a Monday or Tuesday to avoid postal delays.
I would say that your new test results are correct as you have hypothyroidism and need levothyroxine to be well. Once you get vitamin levels optimised your other symptoms should vanish.
Ferritin/iron is usually the culprit for heart symptoms.
I think you have reduced a step too far, but I can appreciate why you are doing this.
Get the vits etc tested, this is vital. My experience was I had all the heart problems you have when my T3 was as low as yours. I then took T3 - Liothyronine - and raised my T3 to near the top of the range and all my heart problems went away very quickly. It is worth asking your GP for trial of T3 to see if this works for you. Low T3 has been proved to affect the heart.
Thanks for you for your helpful suggestions … Yes you are right about a step too far and with hindsight I think much smaller steps would have been better. At present, thankfully, I am completely cardio symptom free …. though increasing Levothyroxine again might soon change that back again ?
I shall discuss your kind ideas with GP and will request vits etc testing ( if need be paying for those tests).
I am slightly wary of changing medication given many thyroid related sufferers seem to emphasise the need for continuity of medication … even trying to ensure the same brand is apparently quite important.
It's much appreciated that you are giving time and thought and trying to help me find a solution .
May I ask if you had your daily dose the morning of your blood draw? It is recommended not to take them the morning of the draw as it can give you a false positive. Ps as thyroxine has many issues with conversion with a lot of people I would certainly consider the switch to T3, this cuts out the question if you were having issues with thyroxine & as you are on a lower dose now it wouldn’t take long to find your optimal dose with T3.
If thyroxine is the cause of issues it will come back but by this time damage could already be done & like me end up with multiple immune problems.
Yes I took my usual dose at 7.30am with water only, had breakfast about 9.30 am with some thyroid positive supplements then test at noon. I think I should ask for a retest and allow a 24hrs gap before retesting. What do you suggest?
As requested...zinc bisglycinate 25mg, selenium 200mg, iodine 150mg, d3 50mg , ashwagandha 1000mg... my so called thyroid positive supplements... I hope this helps your assessment of my hypothyroidism
Dear Helvella administrator … I responded to your question yesterday … and have received no reply yet … In the interim , I have been a wee bit anxious to learn your knowledgeable thoughts about my rather unorthodox cocktail of '' thyroid positive supplements''. Can you please provide me with any further advice or help?
Selenium - I wouldn't take more than 100 micrograms a day without being tested. (Maybe for a short while but not months.)
Iodine is always difficult. Have you been tested? Have you considered that you are getting some iodine from your thyroid hormone? And have you assessed how much you are getting in your diet?
D3 - OK
Ashwagandha - I still have not understood what it does. I know the standard descriptions but they tend to read as "all things to all people". I am not convinced and some are very much convinced that, at least for themselves, they won't take it.
The answer to each of the above supplement questions is equally that I don't know .. and confirming I have been untested for each … and yes it's all been rather hit or miss and very unscientific by me … motivated by me trying to reduced my thyroid's dependency on levothyroxine … and thereby trying to minimise or eliminate the dreaded associated cardio symptoms.
It's all based informally on self help 'YouTube' sources and some online medical papers about ashwagandha for adrenal support (I think from memory). Do I think I ought to stop all of these?
Thanks for you kindness and help … I shall stop taking the selenium tablets .. and only take one brazil nut per day which is said to be rich in selenium and thereby a more acceptable dietary source (hopefully!) ..
Joe taking your levo before a test will not affect your TSH. Tsh is not affected that quickly.It will affect your ft4 level though depending on how close your dose and blood test are .Assuming you dose once per day- if you leave 2 to 4 hours between dose and test then you are measuring the peak level your ft4 gets to. If you leave a 12 hour gap you are measuring the mid way level. If you leave a 24 hour gap you are measuring the lowest level that ft4 gets to in the blood .
Given your problems you might want to know how high your dose spikes so a blood test 4 hours after your dose would tell you this.
You will need to increase your levo I suspect but I suggest you do this by taking a second separate dose. Taking your daily dose in 2 lots means that the spike as the levo t4 enters your body is not so high and is gentler on the body
I have always had to take my levo in at least 2 daily doses to reduce this peak level.
Thanks for clarifying the process of TSH levels relative to dosage timings.. it's quite a minefield for getting accurate test results... though I follow your thoughts..I see GP tomorrow so I shall discuss your good advice based on your own personal experiences... although other experts seem to highly recommend skipping the dose on the day of the test.Thanks for your help and kindness
Most folks on here do the 24 hours so they get the lowest ft4 level. The lowest level is important for them as it may be significant in convincing the GP to give them an increase in levo. They also advocate early first thing fasting blood tests as this is when tsh is at its cyclical daily highest. This is again to help advocate for an Inc in levo where necessary. This is also based on once daily dosing.
What is important is that you interpret your results according to the hours left between dose and bloods ie you know you are measuring peak levels , mid levels or lowest levels of ft4.
Given that I strongly dislike levothyroxine ( because of unwanted cardio side effects), with all cardio symptoms now eliminated by taking my current lower levels of levothyroxine, how can I best dose myself before any blood testing to try to lower the current aberrant high TSH reading?
The last test produced 17.3 H in bold. However, simultaneously the Free T4 reading was 14 ( normal range 9-28) and the Free T3 reading was 3.7 (normal range 3.1 -6.8) - both of these readings are therefore apparently still within the normal range.
Unlike many others who want to persuade their GPs to increase their levothyroxine , I prefer to stay on low dosage 50mmg, but only if I am not harming myself !! Can you Lalatoot, or any other expert on the forum, clarify these matters for me please?
Joe the tsh reading just tells you that your body is stimulating the thyroid strongly because it thinks your ft4 and ft3 should be higher. The hormones that cause the symptoms are ft4 and ft3. Those are the 2 levels to watch. At the Moment your ft4 is 14 and your ft3 is 3.7. if you feel well with them at this level then I would suggest that you try to keep them at those levels and see if you continue to feel well. To monitor your levels with consistency you need to keep doing your blood tests the way you did the last one so you are comparing like for like .
Keep monitoring your levels and don't let them go below range. Keep monitoring how you feel.
Many of us on here have a different version of the same problem. Our TSH is also out of step with our blood results and how we feel. To keep well we need our TSH to be very very low. Mine is so low they cannot measure it. But my ft4 and my ft3 are well within range.
Whatever you do, ensure ‘stability’ of levo dose before any radical changes e.g. introducing T3. Cardio symptoms are extremely unpleasant and a fine balance is necessary. Clodhopping around with lots of changes or drastic changes, which you appear to have been making by reducing your levo in big chunks, is definitely not recommended. My sense of what’s been happening to you is that you now might be taking too little levothyroxine. You might need just a tiny bit more before ‘stabilising’. Take your time.
As you are ‘elderly’ (me too) there is something going on in medical circles pushing the idea we don’t need thyroid treatment. It’s my belief this is totally wrong. It might be we need less thyroid treatment but it’s extremely unlikely after taking levo for a while that we don’t need any?!!
Please take your time, your symptoms will help guide you.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
High TSH & High Free T4
Help needed with daughter's \"normal\" TSH results please.
Help with results undetectable tsh 
Lab results (understating high TSH)
