Hyperactive Thyroid Won’t Behave

I have rearranged this page to place the latest updates at the top.

November 13, 2017

The last few weeks have been a whirlwind.

• Oct 26: completed my Pain Management Program
• Oct 30: had double dip endoscopies and a second iron infusion
• Nov 3: flew to Perth to visit my cancer patient friend (4 hour flight)
• Nov 5: stopped my thyroid medication
• Nov 7: back to Melbourne (4 hour flight)
• Nov 8: dinner with brother visiting from NZ, organised by my wonderful daughter
• Nov 11: another thyroid function test
• Nov 13: nuclear scan of thyroid in prep for radioactive iodine (RAI) treatment on Friday.

Tomorrow I have a post-procedure appointment re the endoscopies and on Friday I have my radioactive iodine (RAI) treatment. But that is not all! Reading all that back to myself, I wonder how I am still standing!

The bouts of nausea have been increasing in frequency. I am tentatively blaming this on the whole thyroid treatment changes (stopping meds in prep for scan, thyroid slightly but not dramatically whacky, etc) but really, the jury is still out. I did learn today blood test results can lag behind a little, so the patient can feel a greater degree of “unwellness” than is reflected in the blood tests initially.

I had to leave work at 1:30 pm on Friday, much to my disgust. Yes, I am worried about the next few weeks, but although I could take medication while waiting for the RAI to work, the meds could inhibit the uptake of the RAI – not something I want, really.

My BIG shock for the day was this. Initially, three years ago, my hyperactive thyroid was diagnosed as a multi-nodular goitre with no cold nodules. Today I am diagnosed with Grave’s Disease with one cold nodule that will need a biopsy – before Friday. I want to stress this DOES NOT mean I was misdiagnosed: depending on what is going on with the thyroid at any given time, one condition can mask the other condition. Plus I’ve been on treatment for three years. I’m a layperson, I don’t understand the finer technical points of reading the scans (although I will certainly quiz the radiologist when I see him, just out of curiosity), but I mention it to show these things aren’t always a static situation. Treatment of both is essentially the same, apart from that cold nodule needing a biopsy.

Hyperactive thyroid could explain my arm and quad weakness that I was blaming on my low iron levels. Is it any wonder today I am finding my usual sense of humour around all this medical stuff in short supply?

I have just dashed around to my GP to get the forms ordering a “USS guided FNA” – in layman’s terms an ultrasound guided fine needle aspiration biopsy. I’m hoping I can sneak in to Radiology at lunch time – I’m assured it is a very fine needle!

One person I find absolutely invaluable in all of this is my stellar general practitioner, Dr Rebecca Watt of the Airlie Women’s Clinic. I cannot speak highly enough of her care.  For a patient, battling multiple conditions is very different to simply getting the odd work certificate for a virus. Dr Watt’s approach has been such a comfort to me, I highly recommend her and the practice.

My plan is still, at this point, to be back to normal operations by December 1.

Stay tuned.

October 26, 2017

Had a blood test yesterday to check my iron levels after my iron infusion and before I have my endoscopies on Monday (and by the sounds of it, probably another iron infusion). My iron is still too low.

I have read (on nps.org.au) that this is not completely unknown in patients with inflammatory conditions, which includes little ‘ol me. Even so, the “elimination of other causes” process will continue.

I look forward to a thrilling weekend of endoscopy preparation. As I won’t be able to do much, readers may be subjected to more of my writing!

October 19, 2017

More news. Now adding a Radiofrequency Facet Joint Denervation to my list of upcoming interventions. The professional assessment of my lumbar spine MRI is the pain in my glutes is likely to be the result of the unhealthy looking facet joints. Not a permanent solution, but should last twelve months, if I’m lucky up to two years. Can be done more than once, if it works. Scheduled for February. Can’t say I know a lot about it at this point, I only found out on Tuesday this week.

This will not prevent my return to normal operations scheduled for then end of November.

October 12, 2017

Did my first post-infusion strength workout on Tuesday. Was very happy with the results. Definitely have more energy and strength. Did discover getting up off the bench after a bench press is not something my herniated disc likes too much, so after discussions with my physiotherapist (to confirm my suspicions), I have decided my chest press will have to be in the weight machine from now on, at least for a while. I much prefer free weights, but my back is telling me to change, so change I will.

Other than that, the waiting continues for the next step. Slowly creeping towards the end of November, but I am impatient!

October 5, 2017

The infusion went well (Monday) and I am feeling more energetic already (Thursday). Will be resistance training on Saturday and swimming on Sunday. Clocked up over 8,500 steps today without an issue.

Feeling positive!

October 1, 2017

At the risk of over-sharing, to explain my reduced availability for a few weeks here is a short account of medical complications I am currently dealing with. This also demonstrates that even us “poster girl” patients can’t control everything!

The first complication is my hyperactive thyroid doesn’t want to behave nicely. My current medication is no longer appropriate, due to the risks associated with being on the dose my thyroid seems to crave for long periods of time. So radioactive iodine it is, requiring me to stay away from people for ten days after I take the radioactive dose. I also have to be off my current medication for some days prior: as a result I expect to be a little off colour for a week or two as my thyroid will effectively be running riot.

The second complication, which may or may not be related to the first, is my iron levels have taken a dive. A rather deep dive. I was wondering why I wasn’t getting my usual improvements with my strength training and was feeling tired at the 800 metre mark of my swims: now I know. Investigations are underway to determine if my iron is vanishing into thin air and if so, why. Procedures are scheduled for the end of this month. Iron infusion to tide me over is happening tomorrow! Very excited about that!

As you can see, my autoimmune arthritis is the least of my issues at the moment. One condition can be challenging enough: with co-morbidity, the chances are higher that clear sailing can be disturbed at any time, completely unexpectedly.

I’m still working, but reducing my availability until after these little glitches are resolved. I expect to be back to normal by the end of November. I will update this article periodically during October and November to advise of any changes. If my responses to enquiries during this time are not prompt, those are the reasons.

Wish me luck!

October 5, 2017

The infusion went well (Monday) and I am feeling more energetic already (Thursday). Will be resistance training on Saturday and swimming on Sunday. Clocked up over 8,500 steps today without an issue.

Feeling positive!