what can I expect?
Posted , 4 users are following.
I had been feeling really unwell following my dad's diagnosis of terminal cancer. I couldn't stop shaking, had palpitations, was losing weight, kept over heating, had swollen ankles and quite honesty felt awful. I found that I had no energy and my legs and arms ached. i assumed that i was having a very physical reaction to the anxiety linked to my dad. I went to the doctor who said she suspected hyperthyroidism and carried out bloodtests. In the meantime I then developed a noticeable lump in the left side of my neck, which moved when I swallowed - the out of hours GP said it was a thyrotoxic nodule. My bloodtests came back showing extremely high levels of thyroid hormone - usually 23 - mine was over 100. No wonder I was feeling so ill! My GP contacted the endocrinologist who prescribed Carbimazole, beta blockers and diuretics. This sees to have done the trick and my levels are decreasing week on week. Initially I was given two month wait for my 'urgent' appointment. My GP was great and pestered for a sooner appointment, which I attended on Friday. I have now been diagnosed with Grave's Disease and have been booked for a scan on my neck. I have also been prescribed selenium to help prevent changes to my eyes. Interestingly, I have been under the eye clinic for 18 months and they haven't done a blood test - they said I had dry eye syndrome - now I find out that it is part of Grave's. The endo was not impressed that this had been missed. I am relieved to have a diagnosis and to know why I felt so ill. I now have a medication regime and I have reviewed my diet and most symptoms have improved although I still have sleepless nights, am still losing weight, have constant upset stomach and a growing lump on my neck. The endo thinks that the extreme reaction I had in terms of stress regarding my dad's diagnosis triggered a sudden flare up in my thyroid although she thinks I have had this for a while and was ignoring the symptoms and just getting on with things, even though i was feeling under the weather. I have now read a lot about Grave's and am worried about the ongoing symptoms of pain and aching - I have been told that I have a lot of muscle wastage already, which may cause problems. This aspect probably concerns me most - has this affected anyone else out there. If so, what should I expect and how can I help myself in treating this?
Also, my consultant is considering removing my thyroid. What will the impact of this be?
2 likes, 6 replies
Guest clare61301
Posted
Hi clare61301, when I was diagnosed with Graves I already had muscle pain and weakness. The good news is that after my thyroid levels normalised my muscles gradually recovered. The most important thing I would recommend is avoiding any strenuous exercise as long as you are still hyperthyroid. If you have muscle cramps it might help to apply Magnesium Oil to your calves and legs. To help my muscles recover more quickly I took 500mg Acetyl L-Carnitine powder per day.
Regarding your thyroid nodule, in the best case scenario, it might be a fluid-filled cyst (that can be treated by removing the liquid through a needle).
Even though I myself have responded very well to treatment with antithyroid drugs most endocrinologists that have seen me at least mentioned thyroid ablation or surgery. I suspect it has to do with preparing the patient early to the possibility that (partial) thyroid removal might be necessary should medication and alternative treatments fail to stabilise the patient's thyroid levels long term.
clare61301 Guest
Posted
Thanks Dan. I can already feel good improvement since starting on Carbimazole, selenium and Propadrol with only a couple of remaining symptoms - mainly overheating very easily and I am still not sleeping through the night without periods of being wide awake. I am hopeful that as my levels continue to drop that these will settle.
I have started short walks with my dog and I seem to be able to tolerate these without any pain or aching, which is good. Last week I found it sore to walk up stairs but this week this seems to have eased.I will have a look at the Acetyl L- Carnitine if I get any further aching.
I have changed a number of things in my diet, which I am sure is also helping. I am determined to be pro active and make sure that this doesn't swap me. I have a really busy job that I love and I don't want to find that I feel too unwell to keep up with everything.
Guest clare61301
Posted
I used to wake up almost every night with a pounding heart and feeling hot. If you google TSH and circadian rhythm you will find that the TSH level shows a regular variation throughout the day. The minimum occurs around 3 pm and the maximum around 3 am. Even though TSH is suppressed in hyperthyroid patients, the minute increase of the TSH and FT4 levels during the night seems enough to cause sleep disturbances.
At the moment, I am down to 5mg Carbimazole and I am taking my dose in the evening before going to bed. (Carbimazole has a half-life of around 4.5 hours in the bloodstream.) In January, I got started on 30mg that is 6 tablets which I would take throughout the day.
clare61301 Guest
Posted
That does explain why I am still having sleepless periods each night. I have stopped having the palpitations and feelings of anxiety but I am restless and overheat really easily.
I am on 40mg of Carbimazole, which I take each evening. I had heard that people felt lethargic after taking it so thought it best to take it later in the day. My levels were over 100 with the norm being 23 but they are coming down nicely so I expect they will reduce my dose at some point.
I had hoped that the goitre on my neck would reduce in size but it is still growing and they think it is pressing down on my vocal chords as I have an increasing hoarse voice. I think they are waiting to see what the scan shows. know that they won't do anything about it until things have stabilised.
Mike61308 Guest
Posted
Hi Dan, After reading your post, especially the last paragraph about timing to take ATM, have some idea and questions for you. First, is the half-life 4.5 hr for carbi and MMI too? So ATM would have at least 9 hr "full-life" until the dose all gone? In my experience, MMI is pretty powerful that even a small dose like 2.5mg (I am taking) can still be very effective. Second, I followed your timing idea and took MMI just b4 going to bed instead of my usual routine as after dinner-- about 4 hr delay. The result made no or little significant change/improvement on sleeping. However, there seems to be a con to this timing change: I got a mild stomach upset for the night. This probably came up because 4 hr after dinner the stomach was at least half or more empty and taking ATM with no or little food in the stomach may cause the upset issue. Can anyone clarify this? Thanks
Guest Mike61308
Posted
Regarding when to take the medication it is best to stick to what is working for you.