Exhausted/Down/Out

[cc251254]

Hi everyone, first of all I will apologise now for what will be a long post! I am a 60 yr old female, diagnosed with hyperthyroidism/Graves in Summer of 2013 but on reflection I believe this horrendous condition/disease had been creeping up on me since 2011 (maybe before), however, the symptoms didn't become too symptomatic/problematic until 2013 at which time the extremely rapid forceful heartbeat, breathlessness, anxiety, tiredness, intolerance to heat and weight loss just became too frightening to ignore or cope with. My GP sent me for a blood test, I received the results the next day and was given 40 mg Carbimazole to start straight away and I was referred to an Endo. I had about 4 appointments with the Endo and during that time I did go from HYPER to "markedly" HYPO at which time he told me to stop the medication until my next blood test. On my 3rd visit to him he put me on Block and Replace (40 mg Carbimazole and 100 mcg Levothyroxine ) and after a blood test just prior to my 4th (last) visit to him he reduced the Levothyroxine to 75 mcg and I continued to take this and the 40 mg Carbimazole up until about 4 weeks ago. 4 weeks ago I went for a blood test and also made an appointment to see my GP (who by the way had not arranged any blood tests for me since I had been seeing the Endo - the blood tests that I had were ones initiated by myself when I felt that all was not well, however, the blood tests were coming back normal). So at my appointment with my GP 4 weeks ago, once again my blood tests came back "normal". I explained that I had been feeling extremely COLD for months (I can remember feeling like this when I had swung from Hyper to Hypo so I assumed that's what was happening to me again) when everyone else was feeling warm, also that I was feeling much more tired than I had been and had had a few anxiety attacks and that I had infection after infection since last November (colds/flu/chest infections). She dismissed all of this and said it was time have a trial HALT of all meds and see what happened. Who am I to argue with a GP ? So I stopped taking the meds and I was "ok" for about 4 days and then over the next 2/3 days all hell broke loose! I had two episodes of my heart beating so quickly and so hard and not being able to breath that I became so light headed that I collapsed to my knees and eventually calmed myself down. I was also unable to go up a flight of stairs without gasping for breath - I was back to square one as per 2013 ! I was so afraid that I started taking the Carbimazole 40 mg before I had even made an appointment to see my GP. I am now being referred back to the Endo and have an appointment for November. I HAVE become extremely aware that stress is definitely one of the factors (if not the main factor in my case) that triggers off my symptoms. I can't help thinking that being taken off HRT in or around 2009 after being on it for 20 years (due to onset of early menopause caused by "bits and pieces" being removed, may also have played a huge part in this. There are so many things I don't understand about this awful debilitating condition/disease e.g. I crave sweet things (have always taken sugar in tea) like cakes, pastries and sweets and I NEVER used to, I would have rather eaten a bag of chips than have a slice of cake. I can only assume that because I have NO energy it's my body telling me to eat sugar for energy and yet I have read on these forums that sugar is not good for this condition. I have lost almost 2 stones in weight, look dreadful because at my age, well it just ages you more. I'm basically skin and wrinkly skin at that, and bones - my muscles have all wasted away and I have zilch strength - can hardly lift anything without struggling and getting out of the breath and unfortunately that includes my 16 month grandson. We are first time grandparents and he is the new love of my life and because of this affliction I can't do with him what I had hoped to do with him and for him, everything is a struggle. I HATE being like this. I apologise once again for the length of this post and also if it doesn't read well but my thoughts are racing away in my rather tortured brain.

[shaws Administrator]

Welcome to our forum and you will get sympathy from the members if not from the medical profession.

One of our Admins, Clutter, who had similar to you but had cancer and had her thyroid gland removed.

You can get well and because at the moment your thyroid hormones are haywire it will take time. Mind you it does seem we have to go it alone as there's little knowledge amongst doctors and sometimes Endocrinologist of the patients' sufferings.

[1tuppence]

Oh, Bless you, cc251254. Thank goodness you have found this forum.

There are wonderful, informed, caring people on this site, who will do their best to help, support and advise you.

You are not alone.

[Clutter]

Welcome to the forum, CC251254.

Always ask for a printout or the exact results of your blood tests with the lab ref ranges. 'Normal' means the results are within range but where in range, ie low-normal or high-normal can significantly affect wellbeing and tweaking dose/s can be helpful in optimising response.

I had Hashimoto's with hype phases and thyCa, so I don't have experience of hypethyoidism and Carbimazole or block and replace. My understanding is that Carbimazole should be gradually reduced and the patient weaned off when attempting remission. It's possible to have remission after 9-18 months on Carbimazole but the remission is often temporary when the patient has Graves disease. Have antibodies been tested to confirm or rule out Graves disease?

You should have thyroid blood tests every 4-6 weeks to monitor thyroid levels in case 40mg Carbimazole dose needs adjustment. It's a good idea to request ferritin, vitamin D, B12 and folate are tested by your GP as fast hyperthyroid metabolism can use up vitamins and minerals faster than they can replaced via diet and you may need to supplement. You can post the results and ranges (figures in brackets after results) in a new question and members will advise and comment.

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

[cc251254 in reply to Clutter]

Thank you for your response, information and the links to more information which I read sometime ago when trying to educate myself on what is happening to me. I tick most of the boxes for hyperthyroidism and many of the symptoms for hypo. On examination of my neck, the Endo felt a few lumps and bumps and I was sent for an ultra sound scan and the nodules were pronounced as being benign as blood was seen to be flowing through them - the ultra sound was towards the end of 2013, a few months after first being diagnosed. I will request the tests suggested by you at my next blood test in a couple of weeks time and post the results. Thank you.

[Clutter in reply to cc251254]

CC, If you have a lot of hypo symptoms 40mg Carbimazole is probably too high and is reducing your thyroid function too much ie low FT3 and FT4 and, if TSH is responding (it may not), high in range TSH.