Hi there - I have a TSH over 100 - identified in October of this year. And even then, only by accident. It was the lab technician who processed the blood test who called me at 10 pm telling me to go straight to hospital for immediate treatment. Swollen eyes and tongue, along with lower leg weakness pointed to myxedemic crisis but I have still only seen a nurse practitioner who prescribed 75 mcg of Levothyroxine. I still feel rubbish - but too tired to jump through the hoops required to get a doctor's appointment. Should I be on a higher dose? Who should I see?
I don't know any other details about the blood test.
sparra21
Should I be on a higher dose?
Very likely. You were started on a decent dose and now it's time to titrate this. After diagnosis and starting Levo, retesting should be done every 6 weeks, with an increase in dose of 25mcg if necessary, and repeated every 6 weeks, until symptoms abate and your levels are where they are needed for you to feel well.
The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be in the upper part of their respective reference ranges when on Levo if that is where you feel well.
So you need to make an appointment for retesting now.
Who should I see?
That depends on how it works at your surgery. If the nurse practioner instigated the prescription originally, and they have the authority to increase your dose, maybe it's fine for you to continue seeing that person, if not then you need to see a GP.
When booking thyroid tests, always book the very first appointment of the morning and fast overnight (water allowed), this means have your evening meal/supper the night before then delay breakfast until after the blood draw, drink only water, no coffee, tea, etc, before the test. This gives the highest possible TSH which is needed when looking for a diagnosis, an increase in dose or to avoid a reduction. TSH is highest early morning and lowers throughout the day. It can also lower after eating and coffee also affects TSH. Also, take your Levo after the blood draw because if you take it before then your FT4 will reflect this and show higher than what is normally circulating. We usually advise 24 hours between last dose of Levo and blood draw so if you take your Levo in the morning then delay until after the test, or if you take it at night then delay that dose until after the test. These are patient to patient tips which we don't discuss with doctors or phlebotomists.
Take your Levo on an empty stomach, one hour before or two hours after food, with a glass of water only, no tea, coffee, milk, etc, for an hour either side as absorption will be affected. Take any other medication and supplements 2 hours away from Levo, some need 4 hours.
Much appreciated. I have another blood test scheduled for Monday so that is good advice. I will only be seeing a nurse however, which is why I asked the question. I shall also ask for full results this time. The last nurse I saw did not prescribe, just passed a prescription from on high which included blood pressure meds and statins. Something in that mix made me feel worse than ever and I was told to drop the statins (telephone call). I've actually dropped both the amlopodine and the avorastatin and bought a blood pressure cuff instead, as both leaflets recommended against use for hypothyroidism and contraindicated each other.
Statins - I'd beware. That's because when we're undiagnosed hypothyroidism - cholesterol is one of the clinical symptom which reduces as our thyroid hormones are increased. I doubt doctors seem to know any clinical symptoms. This is a list:-
thyroiduk.org.uk/tuk/about_...
They are very smart to prescribe for symptoms but not gradually increase our dose of levothyroxine until TSH is 1 or lower.
Also ask for B12, Vit D, iron, ferritin and folate to be checked. Everything has to be optimum.
Guidelines for blood tests:-
Always at the very earliest, fasting (you can drink water) and allow a gap of 24 hours between last dose of levo and test and take it afterwards. This keeps the TSH at its highest as it drops throughout the day and we don't want dose adjusted.
I also was diagnosed when TSH was 100 so know full well how awful we feel.
Well something was making me feel ghastly. I feel like the levothyroxine runs out too - and have occasionally taken two in the day to keep going
Try not to do this.....taking occasional extra dose....or when you come to get new bloods test, it may then not show you need dose increase
We have to have bloods done on constant dose
You are very likely ready for dose increase
Frankly, that is not going to help. You will only feel the benefits of that extra dose six weeks later, because that's the time it takes your body to process levo. But, as SlowDragon says, it could skew your blood tests, making your FT4 look higher than it actually is.
Levo doesn't 'run out', it is a storage hormone, that is stored in your body until it is converted into T3. The feelings you are experience is probably due to the fact that you are still on a low dose. But, all hormones need to be started low, and increased slowly, so as not to stress your body. There are no short cuts, I'm afraid. And trying to speed things up will just land you back where you started, so not worth it, in the long-run.
sparra21 and greygoose I disagree that it takes 6 weeks to feel a levothyroxine increase. The liver is a major site for T4 to T3 conversion. And so it makes sense that when it is processing a T4 dose from the gut that it also converts some of that T4 dose to T3 during the initial absorption. So sparra21 you could feel an extra dose of T4 if you are sensitive to an increase in T3, I know I do.
ncbi.nlm.nih.gov/pmc/articl...
The levothyroxine was a magic bullet for me. Tongue and face reduced swelling in 24 hours. Likewise fatigue in lower limbs and hands. But it seems to last about 20 hours then it all starts again. Taking a double dose prevents that. But I’m monitoring blood pressure at the same time. Have been reprimanded by daughter (a nurse) and have blood test tomorrow. Feel much better prepared with questions and queries now - thanks to all of you