Feeling down and tired all the time

[Cornish_las]

Hi i got diagnosed with over active thyroid in june. After being put on 10mg carbimazole i started feeling much better after a few weeks shaking gone but the last few weeks ive gone back to feeling week, tired, emotional l am putting on waight. Is this normal and could it be to do with the meds amd thyroid? Is it worth speeking to the doctor? Any advise would be great im just really not my self and its affecting my family and work life

[greygoose]

When did you last have a blood test?

How was your over-active thyroid diagnosed? Did they test any antibodies? Or was it just a low TSH?

[Cornish_las in reply to greygoose]

Hi it was diagnosed by blood test because of the symptoms i had but waight loss was one that i didnt have. I had bloods taken last week after seeing a specialist but not sure what for he did say he expected i had Graves and to just take the carbimazole for 18 months then see how it is. Its all been very vague to me ive had to look up alot my self and when i found this sight has been good reading about others experiences.

[greygoose in reply to Cornish_las]

Yes, I was just wondering if you knew what had been tested to give you a 'diagnosis' of over-active thyroid.

Grave's is identified by an antibody test: TRAB or TSI. Carbi is the treatment for Grave's. If you don't have Grave's then you probably shouldn't be taking Carbi, and to tell you to just take it for 18 months and see what happens is so wrong.

If you live in the UK, you are entitled to a print out of your blood test results. Just ask at reception. I think you ought to get a copy so that you know exactly what was tested, and what the results were, and exactly what is going on.

I expect your doctor was vague because he doesn't know much about it himself!

[Cornish_las in reply to greygoose]

Thank you i will ask for a copy amd try get some more information from them as i really know little about wht is going on with my body

[greygoose in reply to Cornish_las]

Well, that's understandable. Why would you know? You haven't been to med school. We all have to learn on the trot when thyroid problems strike. And, those that should be informing us end up knowing less than we do!

[Valarian in reply to Cornish_las]

Without the results of the latest tests, it’s impossible to tell, especially as the endo didn’t have them to hand when you saw him. The recent symptoms you describe could be ongoing hyper (life can feel a bit flat when you first come down to living with thyroid levels within normal range ... you’ve been living in the fast lane !), or you might even be low in range or a bit hypo, which would beg the question as to whether you have Graves’, or were in a hyper phase of Hashi’s.

Hopefully the tests ordered will include TSI or TRAb. If these antibody tests are positive, you definitely have Graves’. If they are negative, you need to keep pushing for a diagnosis.

If you request a copy of your tests, including the ranges used, and post them here, we may be able to give you some more info.

[PurpleNails Administrator]

Hello & welcome

As weight loss is common when hyper for most (not me) regaining it once on carbimazole and your levels are stable is also very common. We are advised to be careful as we have become accustomed to larger apatite. At this time you won’t have have much control over metabolism and appetite so focus on adding nutritious foods & try not to worry about weight.

10 mg carbimazole is a moderate dose some start much higher and the dose slowly tritiated down. Normally re-testing 6 weekly is done. Especially important when staring new to see how you respond. Remaining too high or falling below range must be prevented, as your symptoms of being weak, emotional & tired could be as a result of being under active. You should be reviewed by FT4 & 3 not by TSH alone.

Do you have access to any results? Share them on here and include the ranges as they vary between labs. You should have had TSH, fT3 & fT4 tested.

Also important to test vitamin D, folate, ferritin and B12. These need to be optimal for thyroid health.

Have you been refered to a specialist endocrinologist?

Has the cause of your hyperthyroidism been determined? If doctor suspects Graves it must be confirmed with positive antibodies for Thyroid Stimulating Immunoglobulin (TSI) or TSH receptor antibodies (TRAb). There is also Thyroid Peroxidase (TPO) and Thyroglobulin (Tg) which are often elevated in Graves and highly positive in Hashimoto's / autoimmune thyroiditis which ultimately causes hypothyroidism but can cause transient hyperthyroidism.

[Cornish_las in reply to PurpleNails]

Hi thanks for getting back to me ive never really been told much about my thyroid was waiting to see specialists which i did last week and all he did was tell me about an over active thyroid and said that i more then likely have Graves i did have bloods taken but haven't herd anything back but now youve given me all this information i have something to say to the doctors and ask about and ill ask about results so i can share on here.

[PurpleNails Administrator in reply to Cornish_las]

GPs & even specialist do not always do a full thyroid function or confirm diagnosis with antibodies testing, simply treating all with low TSH as Graves. Try and obtain your past results. Arranging online access is good but can take a little time to set up in the meantime contact the surgery reception and obtain an actual print out of results. Most Endocrinology departments have secretary’s and you can contact them for as hospital results as they wont appear on the GP system.

There’s a lot to learn regarding thyroid treatment & it can be very overwhelming. I read lots when first diagnosed and it never really sank in. Reading a little each day & my understanding is improved.

I recommend being proactive about your treatment recording your symptoms - comparing your blood test. Make notes of questions and discussions with medics and follow up on referrals and appointments.

[pennyannie]

Hello Cornish_las and welcome to the forum :

It is essential that you have the medical proof of a postive over range TSI ( roughly translated as a thyroid stimulating ) and or a TR ab ( roughly translated as a thyroid blocking) antibody blood test.

There are two auto immune thyroid diseases Graves and Hashimoto's and they both start off with a hyper phase and similar symptoms and they can only be distinguished by the unique antibody test for Graves as detailed above.

With Hashimoto's the hyper phase is transient and the thyroid levels come down by themselves and there is no need to prescribe anti thyroid drugs.

With Graves Disease the hyper phase is continuous and you need the AT drugs to block your own thyroid production so to allow the high levels of T3 and T4 to come back down slowly into range.

The thyroid is a major gland responsible for full body synchronisation including your mental, physical, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.

Your thyroid is the victim is all this not the cause, as the cause is your immune system attacking your body, and when it attacks your thyroid the symptoms experienced can be said to be life threatening because of the glands importance in your body.

The symptoms experienced when the thyroid is under attack are numerous, fast heart rate, nervousness, anxiety, insomnia, increased appetite, eating for England, though possible weight loss, feeling tired but wired, and over heating, to name but a few.

Should you also have any eye issues you need a referral to TED - thyroid eye disease specialist and there are TED specialist eye units attached to some hospitals,

Graves is said to be a stress and anxiety driven auto immune disease so it's important to now take some time for yourself, do what makes you happy, and put your needs first, for a change.

Since your metbolism has been running fast there's a good chance your core strength vitamins and minerals have dropped as your body will have been running too fast to gain any nutrients from your food.

Conversely the AT drug will slow you metabolism down, and if you are slowed down too much you'll become hypo, the opposite of hyper, with your body running too slow to gain vital nutrients from your food.

One's metabolim is a fine balance and it will be in your best interests to ensure that your ferritn, folate, B12 and vitamin D are maintained at optimal levels and so suggest you have these included in your blood tests which should be checked at regular intervals to monitor your levels of T3 and T4 thyroid hormones.

It will help you understand what's going on if you keep copies of all blood tests and ranges, and then you can see your levels adjust on varying doses of the AT drug and you can note how you feel and then have input at endocrinology appointments rather than just be some numbers to be tweeked on a computer screen.

Generally speaking the NHS allocate a 15/18 month window for treatment with AT drugs in which time it's hoped your thyroid comes back down into range and stays there without medication and you can find remission and that this is just a one off issue.

If remission can't be found some people stay on AT drugs indefinately rather than loose this major gland to surgery or RAI ablation as then they become hypothyroid, the other end of the spectrum, and on medication lifelong.

I fully understand there's a lot to take in and this all may go over your head. There is more to read on the Thyroid uk website, the charity who support this amazing forum, and you will also learn a lot simply by reading other peoples post and replies.

There is another website which you might like dip into and covers the auto immune component of this disease which currently the NHS do not spend much time on ;

Elaine Moore has Graves and finding no help with her continued symptoms after RAI thyroid ablation started researching this poorly understood AI disease herself, and now has written several books and runs the her own Graves Disease Foundation offering a well rounded, researched and respected insight into everything Graves Disease.

I'm with Graves post RAI thyroid ablation in 2005 and now manage lingering Graves, thyroid eye disease and hypothyroidism.

[El4545]

Hello! I had similar comments to you when I was first diagnosed a few years ago. My FT4 was 100 (12-22 was the range) I started on carbi 10mg. Also asked people about weight and someone told me they saw a bit of weight gain but it all levelled out in the end. I agree with that in my experience. We are used to eating lots but then eventually you realise youre not so hungry all the time and you don’t actually need that much food. Have a look if you can at some of my posts and the helpful information members gave to me to help me understand what I had.

I was told the NHS leave big gaps between appointments but I forgot and the first time I went into remission (I was at the top of the range within 9 months of being on carbi, started on 10mg then moved to 5mg) my appointment for a check up was not for 7-8 months later and by the time I saw the NHS I was hyper again 50 (12-22) FT4 and had had a terrible time in life with relationships and other things in the preceding period. I didn’t make the connect. I went back on carbi but then again the appointments were spaced out. I had started doing my own testing via the handy - in the post kit - from Medichecks (this group recommended it to me) but didn’t keep up and I ended up hypo. Very hypo in fact. My FT4 was showing low when we were tracking at NHS but my TSH needed to go up some more so we stayed on the carbi - it was always about how I felt. And I felt ok. But when I tried to book my next check up with NHS they never had any appointments within the timeframe the doctor suggested, it was always a lot longer. This is why I always had these big gaps between appointments - admin issues. So finally I ended up super hypo for quite a while. Something like 9 (12-22) FT4. I was feeling very tired. Bed at 9pm. Anyway. I came off carbi feb 2020 (about 11 months after my first remission) and started checking every 4-7weeks via Medichecks. Didn’t want a repeat of last time. Within the first week my FT4 was within range 13 (12-22). Its stayed like that ever since and now it’s September 2020. I feel like a different person, the feeling of having drank too much coffee when there were heightened situations has gone.

Sometimes if I was drinking and something was emotional. I’d be over emotional. I no longer need to eat all the time. My thoughts are more structured and I’m not so indecisive. I don’t rush about like things are unravelling before me or I’m chasing a carrot all the time. I feel grounded. Yes, I have moments when I’m anxious and adrenaline pumped but these are much more ‘normal’. I can’t believe I lived like that for so many years. I can enjoy more things now and thanks to this group my journey was made easier. I hope this post helps you or others as I was helped by this forum when I was first diagnosed and ever since.

If you have any questions, please let me know.