GOING FOR GRAVES DISEASE BLOOD TEST: Hi. Thank... - Thyroid UK

Thyroid UK

118,568 members137,502 posts

GOING FOR GRAVES DISEASE BLOOD TEST

NIKEGIRL profile image
NIKEGIRL

Hi. Thank you for looking at my question. What are the best conditions for going for a blood test. Dr is testing TSH, FT3, FT4. This is a monthly blood test so I don’t want to mess this up and my carbimazole dose will be based on this blood test for the next month . I intend to do a morning fasting test from the advice seen previously here.

When is the last carbimazole dose taken? Is 27 hours enough time from the last dose of carbimazole to the blood draw.

How does Biotin affect the blood test result?

I have been taking 15mg of carbimazole a day but today I have felt so sad. Crying and sadness like someone has died. Has anyone else felt like this with Graves? Also feeling fatigued. Is this a sign my bloods are coming back within the normal range or moving away from normal?

Thanks 😊

Thank you.

39 Replies

Hi, I try and get the blood test done in the morning. I don't usually fast for it. More importantly though, I don't think there is a need to stop the carbimazole a day before. I have never done that. Would this not skew your results i.e. make your thyroid levels appear higher than they are and cause your doctor to increase your carbimazole unnecessarily ? Sadness and fatigue could just be a sign that your levels are not optimal yet; you will know soon.

Yes I don’t know what to do about not taking carbimazole 24 hours away from a test. It’s just not like me to feel sad. I’m normally pretty upbeat. My last blood test was so good that the Endocrinologist didn’t trust the results but the GP cut the dose from 6 tablets to 3 tablets and I wonder if that was too much of a cut. Thank you for your tune and kindness in replying

I never felt depressed when I took PTU which is similar to Carbimazole. However when my T4 and and T3 became too low I felt suicidal which is not me at all because I am usually an upbeat person. Low thyroid hormones can make you feel depressed in my opinion.

NIKEGIRL profile image
NIKEGIRL in reply to Lora7again

I am like you. Pretty upbeat and happy so I wonder if the blood results are too low now. On my last blood test the endocrinologist didn’t trust the result because it was too good but maybe it was right and had lowered. The GP cut me from 30g of carbimazole to 15g a day but now I’m sad for reason and crying. Thank you for your kindness and time to reply

Lora7again profile image
Lora7again in reply to NIKEGIRL

You're welcome ... this horrible disease can make you feel down but don't lose hope because things will get better. I am in good place now but I know I might have a relapse again so I am making the most of it. When I was first told I had Graves' by my Endocrinologist and was advised to have RAI or surgery I felt really upset. However here I am 10 years later still with my thyroid and although it has been bumpy ride I am glad I ignored his advice after asking Elaine Moore about it on her site. Hopefully you will get this under control and be able to try for remission and some people can take a low dose of carbimazole for many years and feel well.

NIKEGIRL profile image
NIKEGIRL in reply to Lora7again

I am hopeful. I don’t feel depressed. I just feel sad today and I know that’s not me. I trust my dr and have a good Endo. I do wonder if my bloods are low as other symptoms have disappeared like the tremor and racing heart but I do still have heat intolerance. Everything will be ok I just don’t know where I am at with my blood but will go tomorrow and get it tested. Thank you for your love. I wish you well also

Lora7again profile image
Lora7again in reply to NIKEGIRL

I still have heat intolerance I'm afraid it is as if my thermostat has broken and my body cannot regulate my temperature.

Take care, Lora x

Earliest appointment, after fasting will show TSH highest and FT4 at lowest. Your doctor would probably like to see your TSH rise, but you need to make sure your dose is adjusted by FT4 & 3.

It’s more relevant if you take Levothyroxine (Delaying the dose until after draw otherwise it would be higher than the rest of the day)

Sticking to the same conditions now will give you the most consistent results.

I often have mine in evenings as GPs and nurses can’t get a draw, I have to go hospital clinic and don’t have transport until then.

Keep taking your medication at the same time, every day. You don’t need to alter on blood draw days as it wont affect the blood test. It doesn’t work on current hormone levels it works but inhibiting new production. so taking it shouldn’t be delayed as it will cause a rise in the following weeks...

With regards to the the biotin, it’s not know how and it what way it will be affected only that it does affect some test skewing the results.

My TSH is suppressed at <0.001. It hasn’t moved in 4 months. I had severe Graves with symptoms for 7 months prior to diagnosis. I usually go in the morning for my blood test. I will take the carbimazole tonight before I go in the morning. Thank you for your kindness

Lora7again profile image
Lora7again in reply to NIKEGIRL

Can I just add that the TSH lags behind and takes a long time to rise. Mine is still low at 0.38 but I feel well so it suits me when it is low as long as my T4 and T3 stay in range which they are at the moment.

NIKEGIRL profile image
NIKEGIRL in reply to Lora7again

Yes I agree. From what I have heard here TSH that has been suppressed for a long while can take a long time to recover

pennyannie profile image
pennyannie in reply to NIKEGIRL

Hey there -

Welcome to the 0.01 suppressed TSH club !!!

Since you are on AT drugs you will have very little control over anything as this drug is decided your numbers and your overall wellness.

You are entitled to feel sad and this could easily be due to the T3 and T4 levels the AT drug has taken you to, so mention how you feel, as it's not all about ' numbers ' but how you feel.

I can't remember but would guess I took my Carbimazole before the blood tests as I knew nothing back in 2003 - just maintain the same routine with these blood tests so you have a true comparison - from one set o another.

Glad to read some symptoms have disappeared and as for the heat intolerance - I could say, stay out of the heated swimming pool, but think I'm wasting my time !!!

XX

NIKEGIRL profile image
NIKEGIRL in reply to pennyannie

Hello. Nice to hear from you. I’m not enjoying this club. I have a doctor appt tomorrow to talk about how I am feeling. I have to work and for me that’s the pool. It’s ok. I hope u r well.

Most of the comments you read on this site about blood test timing apply to those who are hypO.

You definitely shouldn’t delay your carbimazole dose for more than 24 hours. The last thing you want is for your thyroid levels to take off again, and while delaying one dose might not matter too much, supposing you get too tired and forget the next ? It’s really important with Graves’ that your thyroid levels remain under control, and that your test reflects the impact your current medication has on your thyroid levels, or your endo won’t be able to adjust your medication effectively.

Timing of tests isn’t critical with hyper patients. Typically with active Graves’ your TSH will be too low for accurate measurement anyway. The concern for many hypo patients is that their medication is adjusted solely on the basis of TSH, which may not provide the full picture. In the U.K., people with active Graves’ usually have TSH, FT3 and FT4 tested every time, at least until their thyroid levels are stable and within range. The endo should also look at the graph of your results over time, relative to the amount of carbimazole you’ve been taking.

Was your Graves’ diagnosed via an antibody test ? It needs to be TSI or TRAb- if not, it would be worth raising this with the endo, as Graves’ isn’t the only cause of being hyper.

It’s quite difficult to predict test results based on symptoms. The most reliable predictor for me was my resting heart rate. Tiredness isn’t unusual with Graves’ nor are mood swings. You may not yet be able to do all the things you could do so easily a couple of months back, which in itself is depressing.

NIKEGIRL profile image
NIKEGIRL in reply to Valarian

I have a good GP and Endo. I get TSH, FT3. And FT4 done every time every 4 weeks. I have had TSI, TPO and TRAb done. All 3 tests are positive with very high numbers so Graves for sure. Sadly. Yes with regards graphs results my last blood test results were very good and didn’t fall in line with the graph projection. The Endo didn’t trust the result as the sample was too small to even get FT3. Its just not me to be so sad like this. I normally feel sick on the drugs and that makes me feel emotional but I’ve gone from .30mg to 15mg and not feeling so sick. Like you my heart rate has come down from 100-110bpm to 70-85b so that’s a good change. I am ok not going to the gym but come Christmas I will want to be going back as that is 5 months of no gym and I love going to the gym. Thank you for your insight. I appreciated that immensely

helvella profile image
helvellaAdministrator

Carbimazole has a short half-life - typically around 8 hours.

That is why, at least at the start, it is often advised to split dose. With 24 hours between doses, there is the possibility of thyroid hormone production ramping up as the carbimazole level drops between doses.

(I believe that many can get onto single daily dosing as they move from initial dosing to long-term treatment.)

NIKEGIRL profile image
NIKEGIRL in reply to helvella

Thanks. I will take my night dose instead of skipping it and that will 12 hours from night dose to blood draw. I just want an honest result. I really genuinely want to get better. Thank you

helvella profile image
helvellaAdministrator in reply to NIKEGIRL

Of course you do! :-)

And I wish you all the best in getting there.

NIKEGIRL profile image
NIKEGIRL in reply to helvella

Thank you. This is hard. When I don’t feel like my normal self it is twice as hard. The easy choice is to give up, it takes more strength to carry on. Thank you for your love and encouragement

hiok profile image
hiok in reply to NIKEGIRL

Hi,I hope you are feeling better. I have been diagnosed with Graves, after 10 days on 40mg my dose was cut down in half to 20 as T4 was normal and t3 almost normal. Now I’m on 20mg 3 weeks and I feel exactly like you . I am crying and sad and tired. Very unusual. Also I’ve put all the weight back and I’m starting to put more on even though I’m exercising (gently) and eating right. This is so depressing. Have things improve for you??

NIKEGIRL profile image
NIKEGIRL in reply to hiok

Sorry this is hard for you. We are similar in big doses and big drops in levels. It’s awful feeling so low. I am dealing with trauma so my behaviour to comply is not good. I am going to see a professional to help me through the trauma. I did wonder if we felt like this because we have been so high for so long?my biggest fear is getting my bloods back to normal and being told it’s all psychological rather than being optimal for me. I found 30mg and even 5mg too much to handle with regards side effects. How have I managed taking a high dose of drugs

NIKEGIRL profile image
NIKEGIRL in reply to hiok

Did u save side effects from such high doses? The feeling sad and crying is horrible. I try to rationale my thoughts that this won’t last forever but it is for now. I don’t know why our feelings are like this? Maybe someone might come along and have something to add. You are not alone here. There are good people here who can come along with different perspectives. If u can keep exercising gently. A lot of people have told me that you cannot co tell your weight when u r unwell so if you can remember it’s not forever and eat as clean as you can. And that’s what u r saying you are doing so you are doing amazing.

Lora7again profile image
Lora7again in reply to NIKEGIRL

I just copied this from Elaine Moore's site about someone feeling depressed when on Carbimazole.

Depression is one of the earliest symptoms of hypothyroidism and could have easily been caused by too high of a carbimazole dose. The goal of using anti-thyroid drugs is to use the lowest dose needed to keep FT4 near the high end of the range. TSH remains low for quite some time (due to the antibodies) and a low TSH doesn't mean that you're still hyperthyroid. Your thyroid status (hyper, hypo, euthyroid or normal) during treatment is based on your FT4 level.

Herbs can be great and many people use bugleweed instead of a conventional anti-thyroid drug. Either way works but using both when your levels were only slightly elevated to begin with can be overkill. Valerian is fine for sedation and is usually used as a sleeping aid if one can get past the taste. It wouldn't be good for treating mild hyper symptoms and as you said it could worsen hypo symptoms, worsening depression.

NIKEGIRL profile image
NIKEGIRL in reply to Lora7again

That’s really interesting about feeling depressed and the dose being too high. When I was takin 10mg a day and my thyroid levels were coming down I felt really depressed. On 10mg a day I got my levels to this and felt so incredibly sad and tired

T4 was 26 range 10-24

T3 was 12.7 range 2.0-4.0

This is the closest I got to normal in October. I felt so bad with side effects and mood that I came off the carbimazole altogether. When I stopped the carbimazole I felt mentally ok again and the side effects went.

Thank you for this insight. Another member called Hoik would benefit from this information as they are going through these symptoms having come from 40mg to 20mg.

Lora7again profile image
Lora7again in reply to NIKEGIRL

Elaine Moore really helped me in the past because I was getting no help from my Endocrinologist and he offered me counseling when infact my levels were too low. He was going just by the TSH instead of the T4 and T3.

NIKEGIRL profile image
NIKEGIRL in reply to Lora7again

I am lucky because I get TSH, T4 and T3 tested every time. I live in New Zealand. That’s how I know a month ago my T4 was 42 range 10-24 and my T3 was 28.7 range 2.0-6.0. If I see my Endo he always tests TSI so I am fortunate if you can even say that

Lora7again profile image
Lora7again in reply to NIKEGIRL

He did start off testing my T4 and T3 but he only tested my antibodies once. I am going to have a private test of everything including vitamin levels because my vitamin D was 7 when I was first diagnosed. I am just waiting for the coronavirus levels to drop before I go near a hospital.

NIKEGIRL profile image
NIKEGIRL in reply to Lora7again

I’ve only ever had antibodies done once. Yep Vitamin D at 7 is pretty dire not it can be supplanted and brought up so that’s a positive. I think that’s why I’m converting really well. I’ve been doing the supplements for months. Be interesting to see how your vitamin d is now and the other levels for supplements

Lora7again profile image
Lora7again in reply to NIKEGIRL

My vitamin D was 64 back in March so hopefully it has come up now because I have been using the vitamin D BetterYou spray every day. The low vitamin D was at the beginning of all this about 10 years ago I should have explained better.

NIKEGIRL profile image
NIKEGIRL in reply to Lora7again

Ah yeah. After 10 years it’s gotta be better than 7 🤣. 64 is still at the low end? Just gotta keep pushing on because that’s what we do. I want to say thank you for all your support. It is nice chatting with u. I was scared I would get hate messages for coming off the carbimazole but it’s complicated and people wouldnt understand the mental struggle. Stay safe. You guys are doing it tough over there. My husband is English and we had our family in England before we came back to New Zealand to live. His mum still lives in the uk. Have a great day and look after you and your family. Kindest regards NIKEGIRL

hiok profile image
hiok in reply to NIKEGIRL

Hi, thank you so much for your reply. I am actually back from Getting my blood results. I really thought that they were going to be low, as I feel really depressed and I am putting weight on despite eating very little as I have bad heartburn and nausea. To my surprise they are still high.When I was at 40 mg my T4 :87 T3: 37

After 10 days at that dose: T4:14.9 T3:7.4, so endo half the dose to 20mg thank god. 3 weeks on 20 and I am now: T4:26 T311.2, even though I feel so blue and putting weight on. This is terrible , I was hoping to lower the dose again, but I. Sure they won’t as my levels high. I don’t understand this. How can I be so depressed, putting on weight without eating much and still high? I’m going for bloods again in two weeks. I wish someone had a magic wand. Being fit, slim and strong is all I had (for many reasons) this is the worse that cd happened. Always been healthy and always ate clean in general, well, 80 %, so this is all due to sick, stress and lost of loved ones. And now I have only to look forward to be overweight no matter what. I feel terrible. Do anyone’s level go up and down on the same dose??

pennyannie profile image
pennyannie in reply to hiok

Graves is an autoimmune disease and when your immune system decides to attack your thyroid the symptoms experienced can be life threatening because the thyroid is a major gland and the body's engine.

You may well be on AT medication and that will stop your own thyroid hormone production raising your T3 and T4 levels any higher , but if your immune system is still attacking your body, and more importantly your thyroid all you can do is play for time, rest, and try and stay calm during the first difficult phase as the diseases progresses.

Sadly mainstream medical do not know how to control, reduce down the autoimmune component of this disease so, in a way, the AT medication puts you into a holding pattern, by trying to block the further complications of high T3 and T4 levels.

Should you want to read up on the AI component of thyroid disease and what you can do to help yourself, check out the Elaine Moore Graves Disease Foundation website which I think I mentioned to you earlier on today on your own post.

PS.. Graves is said to be stress and anxiety driven and can be triggered by a sudden shock to the system like a car accident or loss of a loved one.

hiok profile image
hiok in reply to pennyannie

I am amazed at the level of knowledge you all have. No one had explained all this to me so clearly. THANK YOU

NIKEGIRL profile image
NIKEGIRL in reply to hiok

This is very hard. I’m a bodybuilder so keeping a lean body is important. That’s all gone and so r the muscles. Just fat now. I have been told you are not in control of your body right. It is distressing. If u mention these issues you are vain and people take little regard on the hard work it takes to keep slim. I’ve given up on my body image. It’s too harder battle and no one is coming to help

hiok profile image
hiok in reply to NIKEGIRL

Yes, I do feel as if I’m doing something wrong caring about the way my body looks. It’s not vanity, in my case, even though I’m no body builder, I had the same discipline as a bodybuilder wd have, I took pride on my hard work, and seeing the rewards made me feel good inside. It was the one thing I had control over and that no one could take away from me, and it was healthy, I ate for body health mental health and strength . So when your own body turns against you and takes away all that, when you see all your hard earned muscle wasting away in a matter of weeks and when you see it’s being replace by this layer of gelatine, it’s hard, very hard. I’m not young, so I had to work harder as I aged, but I have always listened to my body and I have always been kind to it, it’s not perfect and never will be, but it was mine, and I could work with it and change it for the better, now I can’t. At least not yet. But reading all the good advise here has made me realise, that all is not lost. Its amazing what good advise from people who know what you’re going through and that have or are in the same boat can do. I’m feeling more positive, and I’m going to try to follow all the good advise and I hope you do too. Best of luck to you and I am so thankful to all!

NIKEGIRL profile image
NIKEGIRL in reply to hiok

You are doing amazing. Never forget that 🥰

Valarian profile image
Valarian in reply to helvella

Agreed. When I was taking 40mg/day, the dose was split into two lots of 20mg, but the endo made it clear that if I was forgetting the second dose, it was more important to take the full amount, even if this meant taking it all at once. By the time the dose was reduced to 20mg/day, it was prescribed as a single dose.

NIKEGIRL profile image
NIKEGIRL in reply to Valarian

That’s still a lot to take. I was very nauseated on 15mg x 2 times a day. Thank you for your insight and support

You may also like...