How long it takes for meds to work?

[Kari55]

My husband started taking Carbimazole and betablocker last Friday but so far doesn’t feel any improvement. His heart rate is even 125 at times. How long does it take for the medications to finally work?

[shaws Administrator]

Those of have been hyper will respond. I am hypothyroid so cannot advise.

[Rmichelle]

Hi there anything to do with the thyroid is very slow, with somepeople they feel an improvement almostvwithin a few days but with most people carbi takes around 4-6 weeks to see any improvement-it is aclong fightbwith your body and alotbof pressure particulary on the heart, please majecsure your husband is resting, i am still off work myself after 6 months as i am on titration doses now as we have to find the right dose for us and to remain good on a maitenance dose, it is also not unusual to feel worse on carbi after a while, it is a very up and down disease and can take a very long time to make us better.

Please make sure hubby gwts new bloods done every month as he will need to check levels every month as to make sure dose is correct-also i hope gp warned him of the side effectvof a bad sorebthroat and mouth ulcers if he does get this he must getvacblood test for full blood count as carbi can reduce your white blood cells and can be very dangerous.

It took me around 2 months to feel slightly better to get ridvof panic attacks, tremors, breathless, anxiety. They will improve but it is not as simple as popping a pill and hey you are ok its a long journey and very much a rollercoastervof a ride to feel half human again.

Also always get copies of bloods as he will need to take charge of his own health now as gps are not very good with dealing with thyroid disease. Please make sure antibodies for hashimotos and graves disease have been done and also ferrtin, folate, vitamin d has this comes hand in hand with thyroid disease. 😊

[Kari55 in reply to Rmichelle]

Hi, sorry to hear that you are still unwell and thank you for a detailed response. What a crazy thing this thyroid is. Resting is important indeed, he went for a scan today and was exhausted. He will see his endo next Friday again. We have started educating ourselves and he knows that he can’t trust the GP. They missed his falling TSH and got him to this terrible state. I hope you get better soon.

[Rmichelle in reply to Kari55]

Yes gps and endos are not the best as us thyroid patients are very poorly managed, im sure we will all get this light at the end of the tunnel.xx good luck and keep the fight up.xx

[Valarian in reply to Kari55]

If your husband is happy to publish his results, someone here will be able to help you I understand them

He should be having FT3, FT4 and TSH tested every 4-6 weeks TSTStested every 4-6 weeks(and if he suddenly begins to feel worse, he can ask for tests to be brought forward ) In addition to this, he should have antibody tests try to work out what is causing him to be hyperthyroid (unless this is evident from the scan).

TSH May stay suppressed for a while, but this is nothing to worry about. They should work out how much Carbimazole to prescribe from FT4 and FT3 levels

[Kari55 in reply to Valarian]

His currently waiting for results of more detailed bloods but so far his basic results were: TSH 0.01, TPO 104.4, T3 27.2, T4 46.4

[Valarian in reply to Kari55]

Do you have the ranges to go with these numbers Kari55 ? (Usually in brackets after the results).

TPO shows positive antibodies for autoimmune disease. I’m guessing the more detailed tests you mention will include testing antibodies specific to Graves’ disease, the most common cause of hyperthyroidism in the U.K.

Difficult to be sure without the ranges, but both FT4 and FT3 look pretty high against typical U.K. ranges. Mine were similar, and I felt really awful, but was much better by the time of me second endo appointment, four weeks after starting Carbimazole.

How much carbi is your husband taking ?

[Kari55 in reply to Valarian]

Hi Valarian, here are the results with ranges:

TPO 104,4 (0-5.6)

T3 27,2 (2.90-4.90)

T4 46,4 (9-22)

TSH 0.01 ( didn’t take a note of the ranges)

He is on 40mg Carbimazole (2 x 20mg a day) and 40 mg propranolol ( 2 x 20mg a day). These results were from blood taken in hospital when they thought he had a heart attack so he shown it to endo. She took more blood from him last Friday and will discuss the results next Friday. I guess after a week he won’t be feeling much better yet. His boss has just asked him to do some work at home - I’m fuming, I didn’t think it is legal for employer to ask this when a person is signed off by a doctor.

[Valarian in reply to Kari55]

I started out on 40mg Carbimazole, with similar thyroid levels. TSH is rock bottom, as is typically the case with Graves’. It may take a while for TSH to recover, but it’s the thyroid levels that are most important.

[Kari55 in reply to Valarian]

Thanks Valarian, he started feeling a tiny bit better today and heart rate is below 100 so far.

[Valarian in reply to Kari55]

It will probably take time to come right back to normal

[Rmichelle]

Sorry for spelling mistakes as i have hand tremorvi type with, im sure other hypers will respond.x

[Valarian in reply to Rmichelle]

Oh dear Rmichelle !

[Rmichelle in reply to Valarian]

Lol, yes already broke 2 cups today that fell out of my hands-getting bloods done tomorrow.xx

[Rmichelle]

Usually betablockers work pretty quickly.

[helvella Administrator]

Carbimazole is fast acting and can start to reduce the production of thyroid hormone within hours.

But anyone who is seriously hyperthyroid will have a lot of excess thyroid hormone both stored in their thyroid and dispersed in the rest of the body (e.g. bound to proteins blood). When you turn the tap off, the overflow continues to pour water until the level in the bath drops sufficiently. This excess can take some time to reduce - possibly several weeks.

At this stage splitting the dose can be important. Carbimazole has a short half-life. If it is taken once a day, the thyroid can "escape" in the hours before the next dose.

The beta blocker will also start to take effect quickly, but it cannot suddenly drop heart rate dramatically. Propranolol in particular slightly reduces conversion of T4 into T3.

When thyroid hormone levels drop, they can do so quite suddenly. Be prepared for that as suddenly going from hyperthyroidism to being hypothyroid (in the sense of having insufficient thyroid hormone) has often been reported to be very unpleasant. And you need to start titrating the dose of carbimazole down in order to achieve a satisfactory state.

[Valarian in reply to helvella]

...except that on block and replace, the high dose of Carbimazole is maintained, but thyroid replacement is added

[helvella Administrator in reply to Valarian]

True - but I was trying to keep it simple.

[Kari55 in reply to helvella]

Great explanation, thanks for this. I’m so happy I found this forum.

[Fruitandnutcase in reply to helvella]

My levels dropped I’m not sure it it was suddenly but I was very hypo by the time I saw my Endo and started on the replace part of my block and replace.

Being hypo wasn’t much fun either but at least I didn’t have the palpitations.

After a few weeks on the carbimazole and thyroxine regime I started to get palpitations again and felt as if I might be becoming hyper again but someone on here suggested it was because I was needing an increase in my levothyroxine and sure enough that’s what it was.

My GP wasn’t keen to interfere with my Endo and gave me amitryptiline to sort out the palpitations, I took them for long enough to stop the palms and by the time I saw my Endo I had phased them out and the Endo increased my Levo and next time I felt like that I was able to persuade my GP to let me increase it.

I always kept brief notes - just bullet points really on my blood tests how I felt on a day to today basis, how my doses changed throughout the course of my treatment and how they affected me etc and it was very useful to have all that sort of stuff to hand when speaking to my doctors.

[Valarian]

The beta blockers will hopefully kick in within a week, and should help with

symptoms such as breathlessness and tremor. Carbimazole may take up to four weeks to begin making much impact on thyroid levels. This is because it doesn’t work on stored hormone, it just impacts future production.

However, none of this is an exact science, and unfortunately there is no quick fix.

[Kari55 in reply to Valarian]

Really helpful, thank you. Looks like we need to wait. I just hate seeing him so unwell.

[Fruitandnutcase]

I don’t know if it’s any help but I started on 20mcg a day which is a bit less than your husband and my bloods didn’t change much in the first four weeks and I can remember my heart beat going really wild at one point within that time.

I doubled my carbinazole after the four weeks and the palpitations gradually disappeared. So it took a bit more than four weeks for me to improve but I wasn’t able to take beta blockers because I have asthma and I would imagine my palpitations would have gone faster if I had been able to take them.

Make sure he gets loads of rest. I think that helps.

[Kari55 in reply to Fruitandnutcase]

I guess it is still too soon for him to feel better. Hopefully his heart calms down after the weekend a bit. He has his scan today, thyroid is enlarged on both sides and is not smooth. Thank you for your reassuring response!

[Lisa254]

Hi kari55 I’m sorry to here your husband is going through this.

I took beta blockers for 2 months to start with, i know only take one as and when I need ....I think you can get different strength beta blockers so it maybe worth talking to your gp and explain what he is going through incase he has too lower dose.

I would definitely recommend him listening to a meditation app when his heart is racing, it really helps me I use insight timer it’s free 😊

[Kari55 in reply to Lisa254]

He is taking 20 mg of propranolol x 2 a day. This was the dose from endo as GP gave him previously 3 x 10mg. He is doing mindfulness meditation and that helps. I love Insight Timer! I have been using is for 6 months nearly every day and it definitely helps me to build resilience - infertility and now this - I certainly need it!

[Lisa254 in reply to Kari55]

It’s such a bumpy road, it’s great your taking care of yourself too, he is very lucky to have you, I’m single and finally just let my mum into knowing how I feel and make her understand this illness i don’t feel so alone now..😊 (I didn’t want her to worry)

The palpitations will subside, I just checked I have 40mg that I used to take twice a day then after a month I went to 40mg once a day but I’m sure my gp said that was on the low side. After a while they gave me indigestion so I was snacking on gaviscon too 😂 endo said it was ok!

It maybe worth doing a food diary too as I found certain foods were worse for palpitations for me i know sugar (inc alcohol) and spices/chilli food are triggers also stress!!

[Rmichelle in reply to Lisa254]

Hi there lisa😊😊 off to bed now as im whacked. 😴😴😴

[Fruitandnutcase in reply to Lisa254]

Hi Lisa, as a mum, I’m glad you’ve been able to tell your mum how you feel. I bet she’ll be far less worried about you if you talk to her than she would be thinking that there was something wrong and not knowing what it was and it’s good to know that you’re not going through this alone - well you’ve got us on here but it’s good that you’ve got your mum.

Good idea about the food diary.

[Lisa254 in reply to Fruitandnutcase]

Thank you fruitandnutcase for your kind words x

[Kari55]

I’m really glad you told your mum, the support is so important. My husband is dairy and yeast intolerant but now has stopped gluten too. He doesn’t drink or eat sugar. Good idea about writing down things, I’m sure there is a link there.

[Rmichelle]

It is brillant you are supporting him as it really does help, my family are very supportive and so far work have been good too, it is so important he does the bare minium and just be lazy as its a cruel disease when it grips and frightening when you dont know when it is gonna end? 😊

[Fruitandnutcase in reply to Rmichelle]

I used to tell people on here you’ve got to be quite selfish and only do things you really want to do, don’t feel you ought to do anything. It’s a horrible disease. I was seriously beginning to think I was mentally ill or losing my mind or developing Alzheimer’s.

When I look back and think how ill I was it’s amazing. I was so exhausted all the time before I was diagnosed, I know some very elderly pensioners who had more energy than I had. I was fortunate in the my kids were grown up and had left home so I could just lie around. I don't know how young people with families manage.

The good news is that I wasn’t and your husband will likely as not go back to normal once his thyroid is all sorted out.