Hi everyone. A new member and I have been reading related posts which has helped me understand the quite a few things already. Due to Covid-19, I only had 2 telephone appointments with my endo in past 6 months so I can't seem to get any clear picture of my situation. Let me explain my situation in detail.
I have had hyper symptoms from last 7,8 years but never got myself tested before(I only moved to the UK 2 years back and used to live in Pakistan all my life). I once requested a doctor back in Pakistan to write the blood tests for me to get tested but he basically laughed at my face and said that men don't really get this disease and I should stop reading internet. I am 30 years old and my height is 180cm and I have never weighted above 70 kg in my entire adult life till 4 months back so I always knew I was underweight but thought I am diabetic due to a really strong history of that in my family.
In September 2019, I noticed that I was missing a patch of hair just around my jaw-line and had a sore throat so visited my GP for that. She asked me to get bloods done and suggested that I could have hyper as I described all the major symptoms. Needless to say I was diagnosed with graves disease and she referred me to hospital for endo team. She also noticed that my heart was racing all the time(close to 120 while sitting on a chair) and I was sweating a lot in middle of November as well. I was told that I couldn't see endo till March 2020 as there was no appointments but she spoke to the team and got me started on carbimazole 20 mg but didn't started me on propranolol. She asked me to take the carbimazole for 2 months and then get the bloods done. I got my bloods done in February 2020 and then at start of March again but I switched my GP in February and wasn't told to continue taking carbimazole so I stopped taking that.
My February results were Free T4: 15.4 and TSH less than 0.01
March results. Free T4. 29.3, Free T3: 27.6 and TSH less than 0.01
Then Covid happened and I couldn't get any appointments with anyone and my weight even went close to 65kg in those days. I did receive a call from my endo at end of March, she discussed everything in detail and told me that I have graves disease and I need to immediately restart on Carbimazole 20 mg and propranolol which I did and I have been taking carbimazole 20 mg since start of April till now but stopped propranolol after a month as my heart beat settled around 60 while resting.
I had bloods at end of June and result was free T4 : 13.2, free T3: 5.9 and TSH is less than 0.01. I haven't had a chance to speak with my endo since the April but she told me to continue taking 20mg of carbimazole. I got bloods done earlier this week but haven't received the results yet so not sure how things are right now.
I am a bit worried about the weight gain as I weighted 80 kg last week so that's around 14 kg gained in past 5 months on my normal diet but I do feel alright other than that. No tremors, no racing heart, no nervous energy of any kind but I still can't discus anything with my endo as they can't be reached so it's all about comforting myself that things are going in right direction for my health (bar the weight gain) but wished I could know if my dose will be adjusted or when can I expect to stop taking carbimazole. Reading posts here has given me an idea on the seriousness of this disease and I can comfort myself that quite a few brave people here have gone through same hell and came up on the other side with a better life.
Apologises for the complete essay and so much details but hopefully someone can take a look at the blood results and help me understand them a bit better.
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reddevil432000
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Graves is very likely as you have had hyper symptoms for many years but to be confirmed you must have Antibodies tested. Thyroid Stimulating Immunoglobulin (TSI) and TSH receptor antibodies (TRAb) are associated with Graves. Have you had these tested?
Carbimazole is taken to lower your thyroid levels and usually regular testing is performed and doses tweaked to ensure you stay in range. Remaining too high or falling below range is best avoided. You should be reviewed by FT4 & 3 not by TSH alone. The ideal is that within 18 months the dose is very low and then be stopped at which point the Graves goes into remission.
Did you or the doctor stop the propranolol? Propranolol does have a very mild anti thyroid affect and in most cases it is intended to be a temporary treatment to relieve symptoms rather than target the cause. It should be stopped slowly. Provided you do not have symptoms eg rate high heart rate or palpitation and can manage without propranolol then personally I would continue on without them.
As weight loss is common when hyper regaining weight once on carbimazole is also very common. At this time you won’t have have much control over metabolism and appetite so focus on adding nutritious foods, rather than worrying about weight gain.
Can you provide the ranges with your results as they vary between labs. Once you have your current results post on here.
Also important to test vitamin D, folate, ferritin and B12. These need to be optimal for thyroid health.
As you have a family history have you been tested for diabetes? My diabetes was revealed once my thyroid levels fell low in range.
Thanks for replying. Yeah. I can see a test done in October 2019 which shows the TSH recepter antibody 13.1 so it's definetly graves. My GP asked me to stop taking propranolol as my heart rate went pretty quickly to 60(with in a month of taking propranolol) and has been between 58 to 63 in last 4 months without propranolol so she discontinued propranolol perscription.
Free T4 range is 9-22
Free T3 range is 2.6 to 5.7
TSH range is 0.35 to 5
I got tested for diabatic earlier this year but haven't been tested in past 6 months. My whole family got tested for thyriod after my dignoses and my father and one sister got dignosed with under active and diabetic while 2 sisters got dignosed hyper like me so we always had a strong history in our family but just never got tested before.
As being hyperactive makes the metabolism run fast, your blood sugar may have been kept under control or even at times a bit low while your thyroid levels were high, but now your thyroid levels are coming into range, you may be at risk
As our thyroid levels come under control, most of us seem to regain the weight we lost. In part, the typical rapid weight loss will only have been temporary anyway, but your energy requirements while hyper will have been higher than usual, and you may have developed an appetite which is now too big for your requirements. I also found I was very thirsty while hyper, and tended to eat food with more sauces etc, all of which is likely to bump up the calories.
This would be a good time to review your diet both in terms of the amount you are eating, and intake of refined carbs. Your GP should be able to advise.
It sounds like you've been somewhat forgotten in this Covid time. I would chase your endo and demand a reduction of the dose as your t4 levels are now unhelpfully low.
With graves disease you want to aim to keep the carbimazole at the lowest level that will keep your ft4 in the higher end of the normal range. Your weight gain could be restorative but obviously you don't want to keep gaining at this pace and I wonder if a t4 of 13 is possibly quite low for you.
I would suggest looking up Elainemoore.com she is a pharmaceutical researcher who specialises in Graves Disease and everything I have written here is drawn from her advice on how to manage graves. Her advice helped me achieve remission! Unfortunately even endocrinologist are very poorly informed on graves so learning n advocating for oneself is essential
But Reddevil’s FT3 was still OVER range ! FT4 was at the midpoint, so hardly ‘unhelpfully low’ in the context of treatment that is aiming to bring thyroid levels under control.
Long-term, the aim may be to find a dose of carbimazole that will keep thyroid levels comfortably within range, but the immediate need is to get them in range in the first place, and then keep them controlled and the June results weren’t at that point. It may be that the most recent results will be lower, and the carbimazole can be reduced, but without seeing the latest results, no-one can be sure of that.
He now seems to be getting the treatment he needs - carbimazole, along with regular testing. Reviews with the endo may not be as frequent as they would be under normal circs, but at least he is getting the tests. ‘Demanding’ a reduction in dose without even knowing for sure whether thyroid levels are within range is likely to be counter-productive.
Most ranges have ft3 of 6.5-6.8 as the upper end. Also a lower end of 9 for ft4 is ridiculous, again most ranges have a lower end for ft4 of 12. I bet there are many people in this community with hypo symptoms at high ft4 levels than that. So it's a bit of an exaggeration to claim ft4 of 13 is middle of the range?
Obviously it's important to get thyroid numbers in range but going too low on ft4 with graves can trigger the autoimmune response and make everything worse.
The range used is the range used...the fact that other ranges are different is irrelevant. Ok, the midpoint of the range would be 15, but 13 is only slightly below that and hardly low in range. Going too low on FT4 isn’t ideal, but the important thing is that FT3 is still above range...it’s quite common for FT3 to lag behind FT4 in terms of coming into range, and to lead the way over the range if there is a relapse. The endo will want to see FT3 below the top of the range before reducing the carbimazole.
Yes. And it's 15.5. Valerian said "FT4 was at the midpoint" and, to me, midpoint means 50% of range. 22 minus 9 equals 13. 13 divided by 2 equals 6.5. 6.5 up from bottom of range (9) equals 15.5.
Hello, You are on the right path and are responding to the medication. It is good that you are having regular blood tests. Hopefully your endo will see your latest results and can recommend a dose adjustment ? If not, ask your GP to contact them. It is likely that you need to take the meds for a bit longer and as others have explained, the idea is to get you on a low dose before they do a trial stop. As your TRab was quite high initially, this may take some time. It is normal to put on weight while being on treatment; you are putting back all the weight that you have lost while you were hyperthyroid. Eating healthily is what is important. Try and reduce stress in your life; stress can be a trigger for Graves'.
The antithyroid medication, is currently blocking your own thyroid hormone production :
Too much AT medication and you will start putting on weight - too little and your hyper symptoms might start to reappear :
It's a fine balance and can take time and many dose adjustments as you go through this first phase and as your own thyroid hormones come back down into range the AT drug should be adjusted down accordingly, otherwise you might start experiencing symptoms of hypothyroidism, the opposite end of the spectrum to where you started.
When hyperthyroid there's a risk that your metabolism runs too fast, and you are unable to extract your vital nurients from your food and it's essential that you keep your core strength strong and solid to support you. The converse is also true as when hypothyroid your metabolism runs too slow to extract these vital nutrients naturally, so it will be in your best interests to have your ferritin, folate B12 and vitamin D tested as these need to be maintained at optimal levels and not " just anywhere in the ranges " .
The most well rounded website on all things Graves Disease is owned and managed by Elaine Moore and the lady herself has the disease.
There are many sections and yes, there generally is a genetic predispostion and it does seem this poorly understood and badly treated auto immune disease is stress and anxiety driven.
It will offer your family members as well as yourself, current research both medical mainstream and alternative more holistic options on the best ways to manage the autoimmune component of this disease which currently isn't really understood in the medical mainstream.
Your thyroid is the victim in all this not the cause - the cause is your immune system attacking your body.
Hi Reddevil, it's typically a long haul, and can't be rushed.
The initial aim is to bring your thyroid levels (FT3 FT4) within range, and see whether they will remain there as the dose of carbimazole is gradually reduced. ('titrated'). At your June test, FT3 was still slightly over range, so whether they reduce the carbimazole at your next test or not is likely to depend on whether FT3 is now within range, and by how much.. The endo will look at the graph of your results over time, as well as the actual result this time around. Eventuallly, you may end up on 5mg/day of carbimazole or even less...then at some point (probably after 12-18 months of treatment) they will try taking you off it altogerther to see if your thyroid levels remain within range, meaning your Graves' is in (at least temporary) remission. The success rate at this stage is around 50%.
If your thyroid levels don't come down below the top of the range sufficiently or aren't stable, they may extend the period for carbimazole treatment, but are likely to start talking about more 'radical' options including using Radioactive Iodine (RAI) or surgery (Thyroidectomy) to reduce the size of your thyroid. This will be irreversible, and you will almost certainlly need to take synthetic thyroid hormones (levothyroxine) for the rest of your life, but this is considered less of an issue than the risks of being hyper. There are pros and cons of both RAI and thyroidectomy. it's worth researching these, but ultimately you would need to decide which., if either, of these options is right for you.
If your thyroid levels were stable and within range on a low dose of carbimazole, but shot up again when it was stopped altogether, an alternative option would be to get the thyroid levels within range again, then ask to stay on a low dose of carbimazole for the long-term. Carbimazole carries risks of some pretty rare but potentially serious side-effects which never disappear entirely, and your Graves' may still relapse, but many prefer this option to the alternatives.
Under normal circumstances, you would have had regular appointments with your endo. When you get your next set of results, you could call your endo's secretary and request a telephone consult even if face to face is still not an option.
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