Just a quick question, my GP has reduced my Levothyroxine dose to 75mcg a day.
I have a lot of 100mcg tablets left (just under 3 packs) and I don’t like to waste tablets. Is it ok to take 100mcg one day then 50mcg the following day and alternate them each day? This way I could use them up.
My GP says this is fine but I don’t always think she knows what she is talking about so wanted to check here as well.
Many thanks for all you help.
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AlphaWolf5195
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You are very lucky to have spare thyroid medication. I would keep it safe somewhere in case you need it in future and get your next prescription asap. Always good to build up a reserve!x
Many thanks for your reply, I get 3 months of Levothyroxine at a time and had only just had a new lot when my dose was changed. I’ll put them to one side and keep them in case I need them in the future. At the moment each time I have a blood test my GP changes my dose.
I have come to the conclusion that my GP knows absolutely nothing about hypothyroidism at all. At the moment I am just doing as she tells me to.
I know I am on a waiting list to see an endocrinologist about my chronic low sodium, so when I see them I am going to ask them about my hypothyroidism as well and hope they can help me instead. Hopefully they will know more about hypothyroidism than my GP does.
I have lost weight but I think this is mainly due to the fact that I am so exhausted I have days when I just don’t have the energy to eat properly. If I mention the exhaustion to my GP she just says it’s because I have ME/CFS, which to be fair it could be, although I have been suffering from insomnia as well which doesn’t help the exhaustion.
Higher Prevalence of “Low T3 Syndrome” in Patients With Chronic Fatigue Syndrome: A Case–Control Study
Correcting my thyroid levels made a huge difference!
From what you say I'm pretty sure your FT3 is very low
For good health every cell in the body must be flooded with T3 by way of an adequate and constant supply?
Low cellular T3 = poor health
From what you say it sounds as if your metabolism is running low which happens when T3 is low.....the body is not able to burn the calorie input which means weight gain and low energy.
Your weight loss however is as you say likely due to inadequate eating. I currently have a spell of dreadful sinusitis and have hardly eaten much for 2+weeks with much weight lost! Once the sinisitus clears and I start eating again that will resolve.
Your T4 to T3 conversion is likely poor and low T3 can affect all, or any part of the body.
I hope this endo understands this and adds some T3 to your dose
Adrenal gland insufficiency (Addison's disease) affects your adrenal glands' ability to produce hormones that help maintain your body's balance of sodium, potassium and water. Low levels of thyroid hormone also can cause a low blood-sodium level.
So again....low T3 may be the answer!
Can you see another GP... this one is a liability!!
We're all here to help....just ask
Good luck!
PS....sorry, stupid me, I missed this
June 2024
TSH 0.02 (0.27-4.20)
FT4 20.4 (11.9-21.6)
FT3 4.1 (3.1-6.8)
It's a text book example of what I was explaining and should have been a red flag to this clown you have as a GP.
FT4 very high, FT3 very low = poor T4 to T3 conversion
TSH very low....wrongly causes fear of overmedication....panic, they reduce T4.
That won't help....you need more T3!!
They should be asking why FT4 is so high and FT3 so low
Unfortunately I’m a bit stuck with my current GP, where I live GP surgeries will only take you on if you live within a certain area and this is the one in my area. Although they have quite a few GPs there, they allocate which GP you will be under when you register there. If my GP is off at all there is a different GP who I see.
I was diagnosed with ME/CFS around 20-25 years ago, funnily enough I was diagnosed with hypothyroidism around the same time. (Although, I had originally been diagnosed with what they called Post Viral Syndrome around 40 years ago which seemed to be the same type of thing as ME/CFS. That greatly improved after having it for a couple of years.)
Unfortunately since being diagnosed with ME/CFS it has just got worse as time has gone on, hopefully if I can get my thyroid sorted out properly I might feel a bit better.
I think my T4 to T3 conversion is poor, I have only ever had my FT3 tested once which was in June, my results were
June 2024
TSH 0.02 (0.27-4.20)
FT4 20.4 (11.9-21.6)
FT3 4.1 (3.1-6.8)
At the time I was on 125mcg/100mcg alternate days.
My GP has reduced my Levothyroxine several times since then.
I am so glad I found this group. Everyone here is helping me such a lot.
I didn’t realise that thyroid levels could affect sodium levels, that gives me an excellent way to turn the conversation from sodium to thyroid when I see the endocrinologist.
I am always wary when GPs are reducing doses, as it is usually based on a low TSH and does not take into account the actual T3 and T4 results or even how the patient feels!
How did you feel before your reduction? Any symptoms? What were your thyroid levels before the reduction? Just as a note, the usual levothyroxine replacement is 1.6 mcg levothyroxine per kg of weight, so if someone weighs around 60kg, they should be on 100mcg of levothyroxine (more or less). I would closely look at your TSH, T3 and T4 before agreeing to any changes, because if the reduction is based on a false premise (e.g. TSH slightly low but T3 and T4 within range) you could become quite unwell.
Many thanks for your reply. I have numerous other health issues including ME/CFS and Fibromyalgia and several others so never know which illness is causing my symptoms. I am housebound and sometimes bed bound, have numerous symptoms and feel constantly ill and in pain. I often feel cold but when I asked my GP about that she just said, you are often like that, it is just the way you are.
I have lost weight recently, mainly due to the fact that I am too exhausted to eat properly. My GP has just prescribed me meal replacement drinks so I am hoping that might help.
I have included my blood test results below from this year and the dose of Levo and when my Levothyroxine was reduced each time.
Jan 2024 on 100/125mcg alternate day
TSH 2.5 (0.27-4.20)
I changed from taking my Levothyroxine in the morning to in the evening and it completely changed my results.
June 2024
TSH 0.02 (0.27-4.20)
FT4 20.4 (11.9-21.6)
FT3 4.1 (3.1-6.8)
June 2024 Doctor reduced Levothyroxine to 100mcg daily
August 2024
TSH 0.03 (0.27-4.20)
FT4 17.1 (11.9-21.6)
August 2024 Doctor reduced Levothyroxine to 75mcg Mon, Wed, Fri and 100mcg Tues, Thurs, Sat and Sun
21st October 2024
TSH 0.09 (0.27-4.20)
FT4 19.6 (11.9-21.6)
October 2024 Doctor reduced Levothyroxine to 75mcg a day
I am on a waiting list to see an endocrinologist for my chronic low sodium, so I am hoping to ask them about my thyroid at the same time. Hopefully they will know a bit more about hypothyroidism than my GP does.
Your results from June show that you are a poor converter of levothyroxine as your TSH is low and your T4 at 87% through the range (but still within!), however your T3 is only 27% through the range, which is very low and this is the reason you are having symptoms.
Lowering of your levo dose did nothing to lower your TSH to within the range (reason for the GP's exercise) but lowered your T4 and the latest results do not even show your T3 levels, which will be even lower than they already were in June. If this continues, you will be on a starter dose with your T4 low and T3 even lower and you will feel awful. Remember, around 1.6 mcg levothyroxine per kg of body weight, but in your case, as you are a poor converter, you may need a dose of 75mcg or even higher AND the addition of T3, as the levo alone will not give you sufficient T3 levels.
In a previous post, people have suggested that you may need to add T3 to your medication routine, as you cannot produce enough T3 from the levothyroxine you are taking. I would strongly think about this and if you can, discuss this with the endocrinologist, hopefully you can speak to one that knows a bit more about thyroid issues and not just diabetes. Sadly, many endos are as clueless as the GPs. If your endo is not receptive to prescribing T3, you can get a private T3 prescription from Roseway labs - I know it is not ideal and we should really not have to pay for the medication we need, but it is an option which may help you to get better.
I am really hoping that I can get the endocrinologist to prescribe T3, that is my plan at the moment. I will tell them I have poor conversion and can I at least try T3 as I have so many symptoms to see whether the T3 will help at all.
I have been just waiting for this appointment.
I am reducing my levothyroxine dosage as my GP recommends at the moment so that if it makes my results and symptoms worse, I can tell the endocrinologist reducing it is making things worse and this will make them more likely to help.
From what I understand T3 is expensive so I really don’t know if I will be able to afford it if I can’t get it on the NHS.
I do hope that the endocrinologist can be persuaded to prescribe T3, if he is reluctant, you could say that you would like to try it on a trial basis and see how you are getting on. He might be more receptive to that than you just stating you would like to have it?
That’s a good idea, I’ll ask if it would be at all possible to have a trial of T3 to see whether it helps at all. Thanks for all your help, I really appreciate it.
No worries at all, I keep my fingers crossed. If the endo is persuaded for a trial of T3, come back to the forum and post the dosing here. Some endos have been known to prescribe far too high doses of T3 to begin with and of course if that does not work (which it might not if the dose is too high) they can say 'told you T3 does not work'.
If he agrees to a trial, post here again and ask the knowledgeable T3 wizards here to help you with titration. You will be in much better hands with them! Good luck!
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