I am overactive on carbimazola time length for drug ? 7.5mg and 5mg on alternate days TSH 0.07 FT4 14.6 FT3 5 have anxiety still .

[corena7]

Doctor prescribe propanol . Should I take this drug?

[shaws Administrator]

It is usually prescribed for overactive. Someone who is will respond to your question.

I do know it can affect the uptake of levothyroxine but that doesn't apply to you. It does calm the heart and your system.

[corena7 in reply to shaws]

Thank you Shaw for your prompt reply . I will wait for other responses

[Fruitandnutcase in reply to corena7]

Think propranolol is a beta blocker.when I was taking Carbimazole and levo for block and replace my palpitations came back and I thought I was over medicated but someone on here said I might be needing more levo which proved to be correct. Iv the meantime my GP gave me amitryptiline because I have asthma and can't take beta blockers.

I took it and all my BP tablets and vitamins etc at the same time but well away from my levo.

Is there a reason you are worried about taking it?

[corena7 in reply to Fruitandnutcase]

Thank you for your reply I am concerned as read about how drug can become addictive, and other side affects. Did ask if drug was for life but assured me not. I feel for others that have far more problems and worse levels, as this anxiety and sometimes trembling is very troubling.

[Fruitandnutcase in reply to corena7]

Should have said I also have Graves. I was worried about the amitryptiline because it is an old fashioned tranquilliser but my doc said it tends to be used for other things nowadays, in the end I only took it long enough to stop the palps then stopped.

When I got to my endo my levo was increased and I had no more problems.

I was on 40mcg Carbimazole a day with levo - I was taking 75/100 mcg a day by the time the block and replace was stopped. I was SO anxious and nervous before I was treated.

My heart pounded like mad all the time, so much that it woke me up every night, it was just awful, its hard to remember now how awful and jumpy I was. Not to mention bad tempered and dog tired all the time.

[panic]

I have Graves disease which causes an overactive thyroid. My blood results are similar to yours and I take 10mg Carbimazole daily. I also take propranolol to slow my heart rate down I've been taking it since Sept but only started Carbimazole 3wks ago today. Not noticing any big improvement yet. You will be ok taking propranolol I was and I don't like taking new meds!! X

[corena7 in reply to panic]

Thank you Panic I have been taking carbimazola since July 2010

[Lizzy1606]

I used to take propanol 40 mg 3 times aday when first diagnosed and 20 mg carbimazole, (due to palpitations)But when i went to the hospital they put the cabimazole to 40mg and then when i became hypo they stopped the propanol and counteracted the hypo with levo .its block and replace.

[corena7 in reply to Lizzy1606]

thank you Lizzy can I ask what is the lowest dosage to take of Propanol? Hope you are feeling better after block and replace .

[slakin57 in reply to corena7]

The BNF (British National Formulary) gives the propranolol dose as an adjunct in thyrotoxicosis as 10-40mg 3-4 times per day. I'm hyper and have just been given it by my GP for palpitations and raised heart rate while waiting for thyroid clinic appt (newly diagnosed as hyper). She has prescribed it at a dose of up to 80mg per day. So far I've taken about 40mg a day and it's not working! I'm still titrating it to an effective dose tho'. Only started it on the 24th. Will try 20mg 3 times a day tomorrow.

[Mrs_Somerset]

Hi,

I used to take carbimazole for hyper ( now on levo for Hypo), and this is my own experience, hope it helps:

1: the docs need time to adjust the medication - they will keep putting your dose up over a period of time and keep taking blood tests - this can be a couple of years. Once the blood tests come back within range they will ove your meds down and test and eventually figure out a level that is right for you, so you will need to be patient.

2: Carbimazole did not work for me. May I reccomend talking to your doctor if you are on the pill.

3: The anxiety may not all be due to the levels of thyroxine. Some of it may be due to your understandable concern about getting better and when you might feel well again. Strangely, often just knowing this can help. if you are concerned about your anxiety do try to talk to your doctor about this, and specifically ask him to do something about it, rather than letting hten tell you it is a side effect of thyroxine levels.

Wishing the very best,

M

[corena7 in reply to Mrs_Somerset]

thank you for your reply. As my TSH levels are low 00.7 consultant said cannot lower dose of Carbimazola. Maybe you are right about the anxiety comment. Anyway off to Doctors tomorrow will discuss whether I really need to take Propanol

[Discovery]

I was put on Carb (20mg daily) in Oct 2013 and the horrible chest swirling sensations and hand tremors ceased after about two weeks. My lifelong hyperhidrosis of the head also stopped. I feel like a normal person! My dose has been reduced to 10mg now and I still feel really well. I wonder how long I can stay on the Carb. too since it obviously is having such a positive impact on my life. Sorry, I don't know anything about Propanol.

[Hidden]

Hi there

Who says you are overactive??????? You have Graves so you have TRAB antibodies (TSH Receptor Antibodies, ie they block the TSH receptor sites) so you are going to have a suppressed TSH regardless, the TSH will only stop being suppressed when and if you go into remission. Therefore, the TSH is NOT a reliable indicator when treating a graves patient. I've seen results where the T3 and T4 are off the bottom the range HYPO and yet the TSH stays suppressed. I have a friend who is 5 years post TT and she still has no TSH, despite up and down results.

Your T4 is a bit low to middling, most of us are happy with a T4 in the upper quartile of the reference range and your T3 is also middling, most of us are happy with a T3 at the top of the range. An upward movement of the TSH in a graves patient indicates over treatment with carbimazole. Anxiety can be caused by being over treated as well as undertreated. Beta blockers further block the conversion of T4 to T3 and slow the heart and lower the blood pressure. Do you have a racing heart? Are you sweating, shaking, pooing a lot? If not then you are not HYPER.

Anxiety can also be caused by low iron, low B12, low Vit D, low trace minerals, also by imbalanced electrolytes (e.g. you could try taking an electrolyte powder and see if that helps your symptoms). Graves disease causes the body to use up nutrients too quickly and also causes poor digestion so you don't absorb nutrients properly. YOu need your GP to fully test you - full metabolic panel, iron, B12, folate, vit D, full blood count, and liver enzymes.

Your endo needs to give you a scan and ultrasound. And you need to get copies of all of your blood results including all the antibodies they have tested - and if your endo is not listening to symptoms, get another endo.

Graves disease is incredibly serious and it makes me so angry how badly it is treated. You need to become an expert patient and start learning about your disease so that you can be assertive in terms of your care.

Hope that helps, hang in there,

Rebecca

x

[corena7 in reply to Hidden]

Thank you Rebecca for your help sorry about delay but had probs with laptop then with chrome notebook still fine now I will ask my Doctor to do as you suggest . I have had a racing heart and also tremors.

[corena7 in reply to corena7]

I did as you suggested Rebecca and very glad that I did . I had a copy of my results B12 had 2 years stored, my Vit D was profoundly deficient as said it was 22 apparently 70 is normal . Now on D3 vit tablets 800gms a day. doctor is replacing slowly, still everytime sun is out so am I.

I still feel very anxious sometimes but propanolol helps, only taking 1 10mg a day.All the other 2 pages of tests were all fine . But tsh 0.07rather low same as January visit to endo free T3 5.5 free T.4 21.2 . How can they higher the tsh? Also I have not had a TPO test since diagnosed with Graves in 2010 is this usual? I would appreciate your advice and I am pleased that I read your notes about testing minerals. I realise now how important B12 and Vit D are. Thank you again.

[Hidden in reply to corena7]

Hi there

Well done. It would be helpful to see the reference ranges for anything you post results wise but really well done for getting hold of them.

OK no idea what 'two years stored' means on the B12 - your B12 needs to be over 1,000 for you to feel well and you probably need to be taking at least 1,000mcg of Methyl B12 preferably in a lozenge a day. I like Jarrow, Solgar or Bluebonnet brands.

Vitamin D most of us take 5,000iu a day when we are depleted and then drop to a 1,000iu maintenance dose.

I never trust a doctor who says 'fine' about anything. Have you got results for your iron levels - ferritin, serum iron etc, your sodium, potassium, folate? If yes write them out with the reference ranges. If you have Graves it is highly unlikely these are 'fine'.

Right, as for the Graves thing why have you been diagnosed with Graves? What were your starting levels that made them all panic and put you on Carbimazole? Do you have your TSH, FT3 and FT4 from the point of diagnosis?

Also, if you go back and read what I said before you'll see that the TSH is a red herring in Graves because Graves is diagnosed by the presence of TRAB antibodies. TRAB stands for TSH-Receptor antibodies. This means they block the TSH receptors and that's why you have a suppressed (ie low) TSH in Graves. Therefore in Graves the TSH is not indicative of anything, it's highly unreliable (it's unreliable anyway, but that's another story!). Plus, if they haven't tested your TRAb (sometimes called TSI) then I can't see how they're sure it's Graves.

When they tested your TPO what was the result? TPO antibodies are also elevated in 60% of Graves patients but they are most usually found in Hashimotos patients along with TgAb. Hashimotos is a different kind of autoimmune thyroid disease where you get periods of hyper, and then hyPO. Different kettle of fish and different treatment. These distinctions are important as it will inform your treatment.

So we need to know, what level were your TPO at and what is the result for you TRAB (TSI)? if you don't have positive TRAB you don't have Graves.

Also, if you get a RISE IN THE TSH on carbimazole, this means you have been OVERTREATED - this is stated explicitly in the treatment guidelines for titrating carbimazole for Graves patients. TSH remains suppressed in Graves patients because of the antibodies - which is why only incompetent doctors wet their pants about it. But believe me, being overtreated on carbimazole is no laughing matter. Like I said your T4 and T3 are now only middling. If you do have Graves, you'll be used to having plenty of thyroid hormone hanging around so you are probably now starting to get hypO symptoms, weight gain, constipation, muscle pains, anxiety, funny heart beats, being tired??? This will be combined with the hyPER symptoms, as the carbimazole is like a wet blanket thrown on a fire, the fire is still there, it's just smothered. it's hideous!

I appreciate it's a bit confusing but try to hang on to the idea that the TSH (thyroid stimulating hormone) is a brain hormone, and it works exactly like your thermostat on your heating boiler. It does exactly what it says on the tin, it stimulates your thyroid - so when thyroid levels drop too low, the TSH rises to stimulate more production. When levels get too high, it drops down to tell the thyroid (or the boiler) to turn off. This is a feedback loop. In Graves, the TRAB mess up the feedback loop and the thermostat breaks, so the thyroid doesn't turn off. It is not uncommon for the TSH to remain suppressed for several years after definitive 'cure' for Graves (i use the term with heavy irony). So the TSH needs to be ignored when dosing your medication.

In your shoes I'd be looking for a second opinion if they haven't tested your TRAB (or TSI) or keep on down this high CBZ route without listening to your symptoms more. When's your next blood test?

Rebecca

x

[corena7 in reply to Hidden]

Hello Rebecca,

thank you for your reply, now for some figures

Basophil count ( no idea what that is) 0.002% 10%/L 0.01

B12

Serum Folate 10.4 ugl 4.6-20

Vitamin B12 500 ngl 180-900

Serum Ferritin 99 ng/mi 22-322ng/ml

VitaminD 22 less than 25nmol/L profound deficiency n.b. Patients on alpha-may have low resultsthat are not indicative of actual vit D status.

Sodium 142 mmol/L 135-145

Potassium 4.3 mmol/L 3.5-5.3

Parathyroid Hormone 4.89 pmol/L 1.6-6.9

All other 45 investigations are within the ranges stated.

November 2010 was diagnosed with Graves TSH 4.77

FT4 7.0

FT3 3.1

TPO antibodies 104 Positive.

Why is my TSH getting lower?

My next blood test will be for my Doctor of 39 years to see if my Vitamin D

has risen. My next one in July will be at my Hospital at the Endocrinology Clinic.

I attend every 6 months. I do have anxiety attacks but I am losing weight now probably due to appetite loss, also having some muscle pain. I am on propranolol 10 mg per day for tremors as suggested by the hospital.

There were 45 other results on the full fasting blood test. when I go to the hospial I will mention the TSI test or mabe my doctor could add that to my Vitamin D test? Thank you Rebecca for your help

[Hidden in reply to corena7]

Hi

No worries, thanks for doing that. Right I'm really confused - are you saying when you were diagnosed with Graves disease your TSH was 4.7??? And your T3 was 3.1 and your FT4 was 7? Was this blood test taken before you started on Carbimazole or after? These blood tests show you are HYPOTHYROID not overactive at all. On the basis of these tests no competent doctor would have put you on carbimazole. And if you were already on it, it shows they'd vastly overtreated you.

Your TSH should be between 0.3 and 0.5 to feel well - too boring to explain now but the UK ranges are a joke, EVERYONE healthy has a TSH of less than one. So at TSH of above four does NOT indicate Graves and a need for Carbimazole, it indicates a need for levothyroxine. So there must be some reason why they are saying you have Graves but I can't see it from what you have posted.

TPO antibodies at positive levels indicates HASHIMOTOS disease. So that's underactive not overactive. Unless you are positive for TRAB (TSI) you don't have Graves (you can have TPO and TRAB and have Graves, but TPO on their own is hashimotos). .

I'm really concerned about this, I hope your GP is amenable to questions because I'm a bit worried something is a bit amiss here - it doesn't make any sense why they are saying you have Graves.

Like I said before, the TSH goes down as the thyroid hormones go UP ... so the more hormones the less TSH. The less hormones the more TSH. But swinging TSH and up and down levels is more indicative of hashimotos. Like I said in Graves, the TSH is ALWAYS zero because of the antibodies. So with me, I had 19 blood tests in 18 months and in all but the last one (where I'd gained 53lbs, could barely move as I was so HYPO) my TSH moved up a smidge to 1 but before that it was always less than 0.01 because I had Graves.

The thing that is worrying me is your TSH is up and down like a fiddlers elbow, that happens in Hashis but not in Graves. I'm hoping someone will chip in here and help me out.

Can you ask for a second opinion in case you have been misdiagnosed?

Rebecca

x

[corena7 in reply to Hidden]

I Have just looked at my next blood testing for hospital Free T3 TFT3 FT4 free 4

(xTFT

[Hidden in reply to corena7]

Good that they are testing your free hormone levels - FT3 in particular is the most important. A TFT is a thyroid function test. I've just replied. Can you just check, those TFTs you just gave me a minute ago, were they before or after you started carbimazole?

[corena7 in reply to Hidden]

Before I started on Carbimazola Rebecca . those figures I gave you are correct as written . In August 2011 a year after diagnosis of Graves my TSH was the same as now 0.07mU/L then carbimazola was increased to 5mg /7.5mg alternate days. FT4 15.7mol/L what is Hashimotos?

[Hidden in reply to corena7]

OK, then I'm really worried. Your TFTs are entirely normal and they are increasing your carbimazole???? And your TFTs were HYPO when the put you on carbimazole???/ I really cannot understand this at all. You really need a second opinion.

Hashimotos is the most common autoimmue thyroid disease. See here: stopthethyroidmadness.com/h...

Rebecca

x

[slakin57]

...and to answer your other query, I don't think propranolol is addictive but the advice is not to stop it suddenly. Talk to your GP about how to stop it - you do this by gradually reducing the dose. It does have side effects but any drug that works will have side effects. They don't all happen to everyone that takes it! The benefits usually outweigh any side effect problems!

[corena7 in reply to slakin57]

thank you slakin and will take your advice when stopping this drug.

[Hidden in reply to slakin57]

Propranolol is addictive I'm afraid ... very habit forming.

[slakin57 in reply to Hidden]

What is the evidence for your claim that propranolol is addictive?

[Hidden in reply to slakin57]

It's on the label...

[slakin57 in reply to Hidden]

Not on mine I'm afraid. However wiki does list beta-blockers as addictive drugs. I suspect that this refers to the rebound phenomenon (also in wiki)which occurs if it is stopped suddenly - hence the instructions to follow directions from the doctor when stopping.

[slakin57]

Not my advice corena7, talk to your GP if/when you want to stop propranolol - he or she are the best to advise you. Found this thread really interesting as I am between GP diagnosis of hyper (TSH 0.05) and first thyroid clinic appt. Has made me realise that the first priority is to identify what has made me hyper - before starting on treatment!

[Hidden in reply to slakin57]

A TSH of 0.05 does NOT mean you are hyper!!!!! An FT4 or FT3 OUT of range means you are hyper in the presence of hyperthyroid symptoms. Flippin doctors make my blood boil. Have you read this?

iccidd.org/cm_data/2001_Day...

All kinds of things can suppress your TSH - metformin for instance, the diabetic drugs suppresses TSH meaning lots of diabetic patients who are also HYPO are in danger of having their meds reduced because clueless doctors don't know what they are doing.

In hyPERthyroidism, any doctor worth their salt does NOT diagnose on the basis of the TSH.

I'd run away from this doctor and get another opinion.

Rebecca

[corena7 in reply to Hidden]

Hello Rebecca, thanks for that link very interesting will ask consultant if I can forward it to him.

Panel 3 when read about how can affect the elderly could apply to me as I am 77 years old,

[Hidden in reply to corena7]

Excellent, unfortunately this in an area of medicine where we need to be our own best friends as it's just so badly handled in the NHS ....

Best of luck

x

[slakin57 in reply to Hidden]

I was NOT diagnosed on TSH alone - you just assumed I was because I didn't quote all my results. I also have T4 and T3 over max limits and hyper symptoms. I am

awaiting my first thyroid clinic appt so I do not yet know what the underlying pathology is. Replying to my posts with capital letters and exclamation marks makes me feel as if you are shouting at me. I've seen your other posts and you are obviously very knowledgeable about thyroid problems but remember that this is a new and frightening area for some of us.

[Hidden in reply to slakin57]

I was not shouting at you, I was expressing my frustration at incompetent doctors and you'd be surprised, nay horrified, at the stories I've heard. I'm only knowledgeable because the b@st*rds nearly killed me, I'm not joking!

In my experience when I was over limits on T3 I got a little tetchy with people ....and took things the wrong way.

Best of luck, I'm glad they are doing all the right tests

Rebecca