Hyperthyroidism, having full thyroidectomy in 3 weeks, panicking about afterwards!

[LJones2703]

I was diagnosed with hyperthyroidism in February this year which has been impossible to control with medication. I believe it started just under 2 years ago, a bit before I fell pregnant with my now nearly 1 year old. I started to get breathless a lot and my heart was racing but would settle unlike now where it's continually racing and at rest is around 110 although was 140 before taking propanalol 3 x a day. I was initially tried on Carbimazole however that done absolutely nothing and my levels never came below 100, I'm now on PTU 400mg 2 x a day my levels have come down but they shoot back up and never come below 85. So they have now decided surgery is my best option. I have 5 children, 2 under 2 years old and so the radiation therapy is not a go for me as I cannot be anywhere near children for 2 weeks and as my levels have been so uncontrolled the surgeon and consultant both think this may not work for me so have opted for a full thyroidectomy. My thyroid is swollen I believe the call it goitre, anxiety is crazy I'm scared of everything and that's just not me!! So, currently I have horrendous pain on my muscles and joints and horrible muscle fatigue which is making day to day living so hard. I have severe pain down the sides of my neck muscles and into my shoulders, sometimes I struggle to move my arms away from my body as if I've torn a muscle. I thought this would all go away once I've had surgery but have read people still suffer with pain and muscle fatigue! Is there anyone that can tell me what will happen after surgery, will I be back to normal once a balance is found on thyroid medication?? Will the breathlessness go so I can be mum again and run around and play with my children?? I'm scared I'm never going to feel better! Any advice would be much appreciated

[humanbean]

A common effect of thyroid problems of any kind is that the patient ends up with low levels of nutrients. This can happen with hyperthyroidism and hypothyroidism.

Doctors will look at a ferritin (iron stores) result of 10 with a reference range of 13 - 150, then think to themselves "that's close enough", and they won't prescribe iron supplements.

The above is just an example. There are many others e.g. someone could have a vitamin B12 result of 160 with a reference range of 140 - 700, they could have a long, long list of B12 deficiency symptoms, and yet the doctor still won't treat because the result is in range.

So, we suffer from severe nutrient deficiencies, but doctors think these are minor problems that really aren't something to worry about. They get almost no training in nutrition at all throughout their training.

So, some of your symptoms may be due to low nutrients. Fixing them will help enormously. If you could ask your doctor to test your vitamin B12, folate, vitamin D, and ask for an iron panel and a full blood count, you could also ask for zinc and copper, then ask for a copy of the results. (They probably won't do an iron panel and a full blood count, and zinc and copper, they may just do ferritin, but if you don't ask you definitely won't get.) Once some tests have been done ask for a copy of the results, make sure reference ranges are included, and then copy them into a new post on here.

I haven't mentioned thyroid test results because your levels are going to change dramatically very soon. But once you've had your operation and your thyroid hormone levels have dropped, we can help you with thyroid test results too.

Good luck

[LJones2703 in reply to humanbean]

Thank you so much for your reply! I've actually got a GP appointment this evening so I will ask for these bloods to be done. I have just had loads at my pre op assessment on the 24th however I wasn't feeling as bad as I am right now. I will keep you posted with results!! Thanks again

[humanbean in reply to LJones2703]

Be prepared for being brushed off. Doctors have no money in their budgets these days, and get angry when patients ask them to spend money. If you could take a witness (a big muscly glowering rugby player would be favourite, but a husband/partner would do) it would probably help. Having a witness magically increases politeness in most doctors.