A brief bit of information first. Last year I was diagnosed with cancer, resulting in major surgery in June and a long recuperation. (I have been told 12 months is not unusual)
I had just started to feel much more normal when I went to the GP for an unrelated matter. She asked how I was, I said I still got tired, so she decided I needed a blood test!
Current dose 150mcg per day - for at least 10 years.
Results are:
TSH 0.05 (0.55 - 4.78)
T4 23 (9.5 - 22.7)
T3 5.8 (3.5 - 6.5)
I then received a text message (how rude) telling me to reduce by 50mcg per week, and if I lose any more weight (I am attending their weight loss clinic) she will have to reduce it again. I have so far ignored this message!
I should add that I have lost about a stone in the past year .
TSH has been 0.05 for at least 10 years and T4 was slightly over range once before but all ignored by a different doctor
I have tried reducing dose in the past (but not since weight loss):and it has always ended badly.
At current weight I calculate at 1.6mcg per kilo I should be on 132mcg per day- but I feel fine on current dose.
So should I consider reducing my meds?
What symptoms should I look for if I am over medicated?
Any opinions welcome please.
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carnation
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Tell her that you will happily reduce your levo IF she will make up the difference with a little T3!
Your FT4 is high because you are a poor converter. So, to get your FT3 high enough for you to feel well, you need your FT4 over-range.
But, she is only looking at the TSH, which is obviously going to be low because your FT4 is high. And I doubt she even knows what T3 is.
What's more, the odds are that you are not losing weight because the TSH and FT4 are high - as she obviously thinks - but because your FT3 is too low. Weight-loss can be a hypo symptom just like weight-gain. But I don't suppose she knows that, either.
On the other hand, it's not good to have an FT4 that high long-term. It can lead to other complications (see jimh111 's profile for more information on that). So, it really would be a good thing if you could take less levo but also take some T3.
Thank you. There is no chance of T3 where I live, and I can’t afford to pay for it.
But I am loosing weight because I am trying very hard to. My consultant told me to lose as much weight as I could before surgery, and not to put it back on! That sounds harsh but he is a lovely man.
Having said that I agree about this doctor. I left in tears after my appointment for various reasons. But she probably knows nothing about thyroid treatment, that’s not what I went for. Apparently she upsets a lot of people!!
It cost me £39 for 2 boxes (100 tablets in each) of t3. You would need less than 1 tablet per day in which it works out very cheap. Just sharing in case thats affordable for you.
Re the NHS prescribing T3 there is a list of NHS endos who prescribe it. I can email it to you. If there isn't one in your area you can choose the closest and ask to be referred.
Well, if you are deliberately trying to lose weight, why is she reducing your levo? Doesn't she know you're doing that and that there's no connection with your dose? That doesn't make sense.
Yes she should know as I go to the surgery once a fortnight to get weighed! It’s on her screen!! I suspect like other doctors at the surgery she is freaked out by the 0.05 TSH.
Yes, I expect she is. She's going to have to learn to look at the Free T3, isn't she. Because if she keeps reducing your dose, she's going to make you ill.
She is. She texted a blood test form and said to repeat in 3 months. I intend to see how long I can get away with ‘forgetting’ about that. If all else fails I think a doctor who has backed me up before is still there. Unfortunately a lot of the old guard retired after Covid.
Weight loss can be due to many causes, even including a weight loss clinic being effective! Your GP should consider all possible reasons for weight loss.There are fairly recent studies, last decade or so, that link high fT4 levels with cancer progression (rather than causing cancer). The evidence suggests that it is better to keep fT4 in the lower half of the reference interval. This would require a little T3 to remain euthyroid.
However, the effects of T4 vary according to the cancer type, so if someone has a cancer the benefit of lowering fT4 can vary considerably. I give details on my website ibshypo.com/index.php/thyro... . Note I am not a doctor and do not have any knowledge of cancer, I just look at the numbers.
When you aee over 60 it is difficult to get a prescription for liothyronine, even more difficult than usual. This is because there is a concern that it will cause cardiac problems. I think this doesn't make sense because the risk is no different to levothyroxine, it's purely dependent on overall dose.
In terms of whether you are on too much hormone the best checks are to monitor your pulse and look for a fine hand tremor when holding your arms out in front of you.
If she had looked more closely she would have seen I had been losing weight deliberately since Jan 2023. I went back to the weight clinic Jan this year to carry on. Nothing sinister, I am overweight. Weight loss is about 1lb a week if I am lucky!
You are correct in saying I have no hope of T3 at my age, and I can’t afford to follow that route now that I have no income
Symptom wise my resting pulse is around 58 and I have no tremor. I’m relieved not to be permanently cold at last
When met with a similar issue to yourself I was amazed to find that there were no special different guidelines for people who had ' lost ' their thyroid through a medical intervention - either having had surgery or RAI thyroid ablation.
The thyroid is a major gland responsible for full body synchronisation from your physical ability through to your mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.
If you feel well on this current dose - why rock the boat - for someone with no understanding of how the thyroid works - and more interested in their own voice ?
Guidelines and dosing by weight are quick checks on where your levels and dose may work for you - but they do not fine tune anything and do not replace how you feel and what suits you best.
The body runs on T3 and not T4 and to maintain your T3 at this level - you need your T4 where it is which is so marginally over the range it's not even worth talking about - and you are not over medicated but with a good level of T3 well in the range at around 76% :
A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg - with T3 said to be around 4 times more powerful than T4 :
Some people can get by on T4 monotherapy :
Others find T4 seems to stop working as well as it once did and that by adding in a little T3 - likely at a similar dose they naturally produced before they ' lost ' their thyroid - their health is restored better and T3 / T4 hormonal balance is restored :
Others can't tolerate T4 and need to take T3 only - Liothyronine :
Whilst others find their health restored better taking Natural Desiccated Thyroid which contains all the same known hormones as that of the human gland and derived from pig thyroids, dried and ground down into tablets referred to as grains.
It is true that recent research is suggesting that it is better that we keep T4 below the top of the range and running at around 80% through it's range.
Currently your doctor can only prescribe you T4 - Levothyroxine - and the obligatory anti depressants that don't work -
whereas 20 odd years ago doctors were able to offer patients all the treatment options detailed above when T4 - the cheapest treatment option - didn't restore health and well being-
so for any other treatment option you now need to be assessed by a NHS endocrinologist and it does seem in some areas of the country, that CCG/ICB financial constraints rather than patient medical need are being implemented.
Obviously if you can afford to go privately there is a very different landscape - and forum members can advise accordingly - or you could self medicate as many of us do having been refused any treatment options on the NHS.
But all this is academic - if you feel well where you are - refuse the dose reduction and as you state - you have tried this all before but it did not resolve anything for you and you felt worse and the idea is to dose to the relief of symptoms and help the patient relieve symptoms and not to blindly follow a guideline that many accept is not fit for purpose.
No thyroid hormone replacement works well until the core strength vitamins and minerals are up and maintained at optimal levels - do you have any readings on ferritin, folate, B12 and vitamin D ?
Just for reference - down regulation of T4 into T3 can also be caused by any physiological stress ( emotional or physical ) depression, dieting and ageing - so we need good fats and a clean diet, cooking from scratch - and I would leave this weight loss clinic attached to the surgery .
As far as the weight clinic goes, I definitely will not be leaving. The nurse that runs it is the loveliest person in the practice. She hugged me when I had my cancer diagnosis, talked to me when I went to have stitches removed and has generally supported me all the way. Which is more than you can say about the macmillan nurse! Her ethos is everything in moderation including exercise.
I have been wondering lately whether a GP would notice if someone he'd told to reduce the dose just kept asking for a repeat prescription at the old dose rate. If you want to keep taking the same a.ount of levo, why not give it a try?
Has she even considered that your body might still be righting itself after your cancer treatments/recovery…. She seem looney to think your weight loss is simply due to thyroid meds especially in your situation.
If she had asked the question I would have told her that my weight loss was due to trying hard before and after surgery, and the fact that the hospital food was disgusting! Totally unrelated to thyroid meds. But her only comment about my weight was in the text. Of course she can see what is happening as my weight is recorded by the nurse, but not why!!
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