How do you know if your dose of Levo is right - I'm on 50mg 4 week trial extended to 8 weeks as I feel no better - Doctor treating symptoms

Hi my annual blood tests recently flagged up the possibility of my having underactive thyroid - I was pleased that something came back wonky as for the past 5/6 months I have put on over a stone felt ghastly but had no one thing to pin point and so put off going to Gp as I felt a bit like a hyperchondriac with a gazillion ailments which I was putting down to other things.

Results were as follows:-

TSH is 5 mU/L (range 0.27 - 4.2)

Serum Free T4 12.4 pmol/L Borderline TSH Query Euthroid (range 12 - 22)

Serum Cholesterol 5.5 ( I am on 40 mg simvastatin and my previous level was 3.7 but it has been in the 2's whilst on statin)

I got a bit snotty and snivvely at my blood test appointment so the nurse flung me in with the Gp and the GP said he would put me on trial dose of Levo as I was symptomatic, just gone back after 3+ weeks and told him I can't say I feel any better and any improvement has been from changing my lifestyle - mainly my routine so that I get more productive in the mornings to compensate for mid afternoon zonking out.

How long a trial period at a dose is acceptable before you can request it upping?/ Originally he said I would feel better in about 10 days but I can't see any improvement and I have put 5 pounds on in the 3 weeks I have been on levo despite upping my excercise and watching my diet more.

15 Replies

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  • I can only tell you my own experience. I started on 50mg levo in November. After about 2 weeks my heart stopped racing out of control. Apart from that I felt no different - still bed bound and unbelievably depressed.

    In Jan (after 2 months) I was restested - TSH down to 2.5. My GP said there was no need to do anything as my TSH was now normal. ha ha. I said I thought we were aiming for a TSH of 1. He said ok, you can increase if you want to - do you want to increase by 25mg or 50? I opted for 25mg and after 5 days realised I was feeling totally different.

    I kept on 75mg for 4 weeks then increased to 100mg. The same thing happened - after 5 days I felt better again. After a couple of weeks I started feeling hyper so went down to 75/100mg on alternate days.

    I'm also taking nutri-thyroid and nutri-adrenal - 1 a day of each.

    Today I'm feeling rough again and my heart is racing. Things are still not right but I'm holding out for my appt with dr P in April.

  • Yes, well, doctors often say things like that because they have NO idea!

    Your symptoms and your bloods say to me that you are very hypo. High cholesterol is a sure sign of a thyroid problem (please, please get off the statins, they can - and probably will - do you so much damage, they are modern medecine's biggest evil!). Your cholesterol will come down when your thyroid is properly treated. And besides, it isn't a problem. It's a 'problem' create by Big Pharma and they are making a mint out of selling you dangerous drugs.

    50 mcg is a very small dose and not really likely to make you feel much better. Doses - in an ideal world - should be upped by 25 mcg every six weeks until all symptoms have gone.

    Giving someone a four week trial of something that needs months - if not years - to get to the right dose, is a nonsense. You've been on this tiny dose for four weeks, it would be reasonable to ask for an increase now. And at the end of eight weeks, what is he going to do? Is he going to take it away from you? The man's a moron! You might be better off with another doctor...

    Hugs, Grey

  • Hi Grey, You are very knowledgable, could you give me any reasons why my high cholesterol just hasn't improved with 200mcg of thyroxine and lately NDT too. It just won't budge, my diet etc is still exactly the same, 98% low fat, although I do question if this is doing me any good at all. I have oats for breakfast every day too. It's a mystery.

  • I very much doubt if low fat is doing you any good! Quite the opposite, in fact. You need fat. Did you know that people can die from fat starvation? And your cholesterol level has very little to do with what you eat. Most of it is made in the liver. If you are short of thyroid hormone then the body cannot use this cholesterol correctly and it builds up.

    So yours isn't going down with your dose of thyroid hormone. How much NDT are you taking? Could be that you still don't have enough T3. Or, maybe your adrenals need attention.. If they are fatigued then the body cannot use the thyroid hormone you give it correctly.

    Hugs, Grey

  • Hi Grey, I'm taking 200mcg of levo and now for the last month NDT, I'm up to one grain. I've been taking levo since Aug 2011. Cholesterol was tested in December and it's no different to when I started treatment. The weird thing is my last blood test i was slightly out of range for ft4 and ft3. Yet I haven't seen a change in symptoms.

    I have started to make my porridge with semi skimmed and water rather than skimmed milk and water. I thought it might help my seriously dry skin.

    Thanks for responding. X

  • Helcaster, make your porridge with full cream! It may not help your skin but it'll be much more enjoyable and won't do you any harm.

    Dry skin is another symptom of hypo. Obviously all that hormone you have in your blood isn't getting into your cells. Your body can't use it. Best to get your adrenals tested, but also B12 and all that if you haven't already done so because the dry skin could be due to low B12.

    Grey x

  • Great idea, I think i've been denying myself far too long. It never stopped me gaining weight anyway.

    I know my B12 is fairly low. I was diagnosed over 10 years ago with low B12 by a dermatologist I saw for very dry skin. You couldn't make it up could you!! I get prescribed 50mcg I took them for years, still scraping along theb ottom re results .Now taking better type of b12 at 1,000mcg per day

  • In my personal opinion, I'm not entirely sure that high cream consumption is the best idea... particularly for thyroid patients? We should be aiming to consume lots of healthy unsaturated fats like fish, avocados, certain nuts and seeds, olive oil etc, rather than the saturated kind found in animal fat. Obviously we shouldn't be feeling like we are denying ourselves anything but going all out on things like cream particularly when we are prone to atherosclerosis, in my opinion, is not sensible. A little of what you fancy, when you fancy seems to me to be the best approach.

  • Hi Mathers,

    Your blood test results were very similar to mine when I started my treatment. I was on a starting dose of 75mcg for nearly a year, far too long. How it works is you go up by 25mcg every 4 weeks until your symptoms improve (in theory) The problem most of us have is doctors don't seem to know how to treat this, they worship the blood tests, and not getting you better.

    I'm now on 200mcg, the only thing this did for a while was calm my heart down. I'm now adding in NDT up to 1 Grain now. A rough rule of thumb is 10mcg of Levothyroxine for every stone you weigh.

    It is a long slog for most of us.

    Did the doctor test your cholesterol? It's usually raised when you're hypo, and then responds to treatment. It's a nother good bench mark to see if you are improving.

  • Sorry see that your cholesterol was tested. Very tired today. X

  • Thank you all for replies - when i get my follow up blood test in April which is TSH TSH not on T4 and Urea/Electrolytes because my kidneys dont seem to be functioning too fab either should I request any other bloodtests ( i had every intention of asking this morning and being pro active but just do not seem to function well in front of doctors and turn into such a wuss) I am thinking of writing to see if I can add Free T3 reverse T3 Anti thyroglobum and peroxidase as these seem to be the most useful for diagnosis should I have a conversion problem - OR should i wait till after these bloods come back and take it from there??

    In my GP's defense I guess he is following guidelines from what Ive read they don't need to treat you till THS goes over 10 - or did i make that up :-)

    Just so confused because from reading up GP's dont know what the ins and outs are, testing is not adequate and neither is treatment. They are only repeating my kidney test because i was wailing at the practice nurse and made her go through the results when she said oh that is a bit low we will retest - think my kidneys are about 80 years old - and I feel not far off that too somedays :-(

    40 in may and wanted to be fab and fit but I am feeling fat, frumpy and exhausted :-( sure this is a feeling most underactive thyroid sufferers have felt - not really fussed about being larger but really need some mojo to return as I feel flat - not depressed just disengaged and disinterested :-(

    Sorry I will stop wallowing now and go and clean my living room - it is all knock on isn't it cause looking back - i am not houseproud but usually tidy n stuff but that has slid along with a whole load of other stuff I just want to feel like me again :-(

  • Oh and when I asked GP will I stop gaining weight he said "Depends how much you eat" - I am now having a million different imaginary outraged conversations with him as Ive been the same weight within half a stone for 20 years other than pregnancy weightgain cheeky sod!

  • OK, so the man really is a moron! The weight you gain with hypo has nothing to do with what you eat. It isn't even fat, for the most part! Do a search in the search window up top for myxodoema (hope I've spelt that right!) and you'll find some interesting stuff.

    Grey

  • Thanks Grey :-) It is nice to have someplace to come and vent and where people get where you are coming from :-)

  • Before the TSH test became the diagnosis, doctors prescribed according to clinical symptoms and the dose was increased to eventually between 200 and 400mcg.

    Your doctor should have increased your dose from 50mcg (starting dose) by at least 25mcg and then increased till you felt better.

    This is an excerpt re low dose and if you cursor down to the question dated November 28, 2003

    web.archive.org/web/2010122...

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