Levels constantly changing

[Littlenorthy]

Please can anyone help I was diagnosed in 2011 with an under active thyroid but over the past year my levels have gone up that many times they have put me on 225mg a day I am only 28i don't kno anyone else that has it so don't kno who to talk too about it ... is the level change normal I am trying for a baby so they need to be stable

[silverfox7]

I had my children before I had a thyroid problem though I know there are goals to work to when trying for a baby but not familiar with that. It would be helpful though if you could post your last thyroid blood results and the ranges as members will need those to comment. Always post ranges as they differ from lab to lab.

[Littlenorthy in reply to silverfox7]

My current level is 3.08 but they are stating that to help make sure there is no complications I need to get my level below 2.5

[Boohbette17]

Oh my!! Bless you! Is this mg??? Seems high to me but regardless look here regarding babies!!!

Her site has a ranges page ...

hypothyroidmom.com/hypothyr...

Hugs!🌺

[Littlenorthy in reply to Boohbette17]

Yeh that's mg I have to take 225mg a day for some reason my level haven't been able to stabilise in nearly 2 years

[Boohbette17 in reply to Littlenorthy]

Wow but I see where they feel the need for increase. I have to ask... If you are overweight as I am, when I was diagnosed 2013 my first endo gave 25mcg of Levo then I went to her supervisor who w one look said : with your weight you need more . Sure enough we statted art 110 mcg , now Im on 125mcg -even so I needed T3 to really feel better. Im on 5mcg of that as well. Some people need a combo pill or both meds.

Also, be sure no foods/supplements close to your dose.

I space my inactive Levo at midnight & the active Cytomel at noon. That way my "day" is most optimized as possible. Hope you are better every day more!😊

[Littlenorthy in reply to Boohbette17]

Before I was diagnosed I put on just over 4 stone about a year after havin my son after losing my baby weight, I have only managed to lose two of that and when they started treating me they put me straight on 100 which was perfect for the first 3 years but had nothing but problems since then, I don't eat for an hour after taking my tablets and take vitamins at night so they don't interfere

[shaws Administrator]

When you get a blood test for thyroid hormones, it has to be the very earliest possible, fasting (you can drink water) and allow a gap of 24 hours between your last dose and the test and take it afterwards.

Always get a print-out of the results with the ranges and post for comments.

Six years on thyroid hormone replacements you should be stable but not if you're not being treated properly.

Ask GP to test TSH, T4, T3, Free T3, Free T4 and thyroid antibodies plus Vitamin B12, Vit D, iron, ferritin and folate. He or lab may not do them all so you could get those from one of our recommended labs. Say you've taken advice from the NHS Choices for advice on dysfunctions of the thyroid gland as you want to be able to have a successful pregnancy.

[Littlenorthy in reply to shaws]

Thank you I have booked in to see one of the doctors in the next few weeks I think I would be better seeing a specialist but not sure if that is even possible

[shaws Administrator in reply to Littlenorthy]

Sometimes we can be disappointed.

You can put up a new post asking if a private message can be sent to you re Dr ???. (put his/her name) only.

[greygoose]

Are you talking about your level of TSH? Your thyroid is obviously failing rapidly, so, as it fails, it's perfectly normal for the TSH to rise. And, when the TSH rises, you need an increase in dose. Your age has absolutely nothing to do with your dose.

Have you ever had a print-out of your results? It's very important to always get a print-out, every time you have a blood test, and keep your own records in order to try and understand what's going on. You need to know exactly what was tested, and exactly what the results were. Some doctors prefer to keep these things secret, but if you live in the UK, it is your legal right to have a copy of your results. When you get them, post them on here, with the ranges, and let us have a look. There may be problems that your doctor isn't picking up on. Or, he may not be doing the right tests.

[Littlenorthy in reply to greygoose]

I was fine when I started in 2011 on 100mg a day but over the last 2 years every time my bloods have been done my levels are unstable, I take my medication every morning at the same time, they always show me my results when I go in on the screen

[greygoose in reply to Littlenorthy]

So, do you write them down, with the ranges? If so, put them on here. We need to see ranges, otherwise, we'll only be guessing, and that's no help at all.

What exactly do you mean by 'unstable'? That is a very vague and unhelpful word (which is why we need to see the actual numbers). Do you mean the levels of TSH, FT4 and FT3 go up and down? In which case, is your doctor dosing by the TSH? Do you always have your blood drawn at the same time and fasting? Do you always take your levo on an empty stomach and wait at least an hour to eat or drink anything other than water?

Or, do you mean that every time you're tested, the TSH has risen a little? If so, that is perfectly normal (although doesn't happen all the time to everybody). That is why we're supposed to have a blood test 6 to 8 weeks after increasing or decreasing a dose.

We really do need more detail, because this is all very unclear - if I can say 'unclear'.

And, I have to say that I find it hard to believe that your dose is 225 mg. That's incredibly huge for a dose of levo. Levo is always measured in mcg. Or are you talking about NDT? Are you taking 3 3/4 grains of Armour, or Erfa, or Thyroid S?

[Littlenorthy in reply to greygoose]

No I don't write them down but can get a print out if needed, I have my bloods taken the same time every 3 months

I take my medication every morning as soon as I get up an always leave it over an hour before I eat

Everytime I am tested my levels have reisen they want to get them below 2.5

I don't understand why you would state you find it hard to believe I take 225mg a day of levothyroxine it's not something I would make up, I am on here trying to get advice and help not be quizzed stating you don't believe I am providing correct information

[greygoose in reply to Littlenorthy]

Because levo is always measured in mcg, not mg. 1 mg is 1000 times more than 1 mcg. So, as they don't make pills that big, you would be taking an awful lot of pills. But, someone did say, don't you mean mcg, and you said no, mg. That's why I find it hard to believe. I don't doubt your dose is 225 mcg, but 225 mg is just unbelievable. I think you've made a mistake. I didn't mean to upset you, but it is important to know the difference between mg and mcg. If you go and see a new doctor and get that wrong, they won't take you very seriously.

As for the quizzing, don't you see how difficult it is to help someone unless we have all the details? It could be some tiny thing that is making all the difference to how you feel - like taking a supplement with your levo and affecting the absorption. Something that often happens. But, if you don't want to give any details, that's fine.

[shaws Administrator in reply to Littlenorthy]

Always ask the receptionist for a print-out with the ranges for your own records. If they ask why - say you want to keep your records up to date. Some ask for a nominal sum for paper/ink. Ranges are important as labs differ and if doctors adjusted your dose each time you had a test you will not improve. Doctors sometimes are the most unknowledgeable and if you've had your dose adjusted each time, it will be difficult to reach a stable dose. Always follow my advice re fasting etc before a test and 24 hour gap between dose of levo and test..

[Littlenorthy in reply to shaws]

I will ask next time I am there is the doctor that want to get my levels below 2.5 so that my level as better in case I fall pregnant, I always make sure my appointment is at 8.30am

[shaws Administrator in reply to Littlenorthy]

That's good that doctor is helpful and that you have a good TSH level if you become pregnant. Many hypothyroid Mum's have successful pregnancies. I will give you a link which might be helpful. Some of these past posts might be helpful too.

healthunlocked.com/search/s...

hypothyroidmom.com/about-da...