37yo male currently stateside. Being treated by a naturopathic doctor. I'm gluten free, minimized stress in my life and weight train 4 days a week and diet is as clean as possible. Currently have graves and moderate TED
I had my most recent bloodwork done and the results I believe show why I'm struggling through my days
August 17th at diagnosis of graves
Free T3 was greater then 13 pg/ml normal range 2.3-4.2
Free T4 was 5.61 ng/dl normal range .89-1.76
TSH was less than 0.01 normal range: 0.33 - 4.70 uIU/mL
Trab was 25.6 IU/L normal range 0.00 - 1.75 IU/L
November 3rd labs
Free T3 was 3.5 pg/ml normal range 2.3-4.2
Free T4 was .7 ng/dl normal range .89-1.76
TSH was less than 0.01 normal range: 0.33 - 4.70 uIU/mL
December 6th labs
Free T3 was 2.7 pg/ml normal range 2.3-4.2
Free T4 was .45 ng/dl normal range .89-1.76
TSH was .55 normal range: 0.33 - 4.70 uIU/mL
December 28th labs
Free T3 was 3.2 pg/ml normal range 2.3-4.2
Free T4 was .66 ng/dl normal range .89-1.76
TSH was 11.98 normal range: 0.33 - 4.70 uIU/mL
I was on 30mg daily of carbimazole from the time of diagnosis until after the November 3rd labs when it was reduced to 25mg daily then reduced once again to 20mg daily after the December 6th labs. As I've been told on here before symptoms typically go ahead of what labs show. I started feeling hypo symptoms in early November and they have just gotten worse. Much worse in the second half of December. I can hardly even get out of bed and am so fatigued, sore, achy and have daily headaches. Let alone depression and anxiety.
I've been told now to reduce to 15mg daily.
My first question is does this titration down of the medication seem correct? In the seat of my pants it feels like we are moving too slowly with the medication adjustments.
Secondly, how long until I might start feeling better and not experiencing the hypo symptoms. I felt great all fall until early November.
Any advice or input is welcome and greatly appreciated!
Written by
Woodsman4
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In my experience, it can take a considerable amount of time for adverse symptoms to ease. Try to rest as much as possible & not take on any additional stress (physical or emotional).
Regarding options for Graves treatment, I will alert PurpleNails and pennyannie , as both are very knowledgable in this area.
Regarding your eyes:
I recommend you take a Selenium supplement, 200ug daily, as this has showed to help in mild/ moderate TED when taken in the first 6 months. Many take a maintenance dose of 100ug daily when the active phase of the condition has passed.
Preservative free lubricating eye drops are important, such as HycoSan or Hyloforte.
For light sensitivity wear sunglasses (even indoors if needed). If you have any eye pain, my TED ophthalmologist said to take ibuprofen (with food to protect your stomach). Also worth doing is using 2 pillows at night, to elevate your head.
Please don’t overdo it on Google images, as they show ‘worst case’ scenarios.
I recommend you take ongoing photos of your eyes/ alignment and store in ‘hidden’ on your phone, as you don’t want to be looking at them all the time. Having this bank of photos over time is useful when I have both endocrinology and ophthalmology appointments.
It’s usual to start on a higher dose to bring levels down quickly but that should not remain like that. Once the levels approach being in the normal range the dose is often halved to ensure the drop doesn’t continue to hypothyroidism. It’s also important this is done consistently with retesting levels each time dose adjusted. Eg 6 weekly. Many adjustments & testing close to alterations can cause very unreliable results.
This is because carbimazole works by reducing what new hormone can be produced, nothing can be done to lower the existing levels, that has to stabilise over time.
Perhaps as your TSH is now 11 & far too high, it might be best to lower to 10mg for 6 weeks then retest & assess / adjust as required. You can allow your levels to rise a little.
Many report eye issues are worse when FT4 & FT3 low or fluctuating. If this is difficult there is option of “block & replace” you take a higher blocking dose of carbimazole to block all production then you add in a replacement T4 (levothyoxine) which restores the hormone levels.
Being hyper & then hypo can really knock your nutrient levels which can add to your symptoms. Have folate,ferritin, B12 & vitamin D. Optimal levels will help you recover. Having levels just in range is not same as having levels optimal.
Stopping & starting carbimazole should always be avoided. Although 3 days is a very short break. Seems a reasonable plan of action.
Your levels were originally quite high, it’s possible 5mg won’t be sufficient & level rise again too quick.
Carbimazole is always a fine balancing act & of not managed expertly can result in highs & lows & possibly worse symptoms.
Testing at 4 weeks will check that your on track which is good but it will only be an indicator, not a true reflection of how level will ultimately settle going forward. You’ll need retesting in another 6 weeks later.
I stopped the carbimazole for 3 days then resumed 5mg once in the morning on New Year's Day. Each day since then I've been going more and more hyperT. Anxiety, shaking, sweating, elevated heart rate, insomnia and I've lost 10lbs since one week ago. I'm thinking I should increase my dose to 10mg or even 15mg split up through the day. Does this seem reasonable?
Also I'm assuming any hormone produced on that 3 day pause, now causing hyperT symptoms, will just have to be used up over time, 4-6 weeks until it's all burned up? So I assume the hyperT symptoms will continue for some time regardless of what I do with carbimazole now at this point correct? I'm mostly concerned to not over suppress but also don't think 5mg once daily was enough to keep my thyroid from escaping and making the hyperT worse
I should clarify. I was on 20mg daily split dose before the most recently was changed to quitting for 3 days then resuming 5mg once daily by the endocrinologist
20mg to 0 for 3days to 5mg. I think the doctor is doing this because your TSH is quite high. Dr is aiming to allow TSH drop into range quickly but some are sensitive to adjustments, so jumping around doses isn’t helping.
This is from a theoretical point of view - those with actual experience should be listened to!
Carbimazole has its effect very quickly - a couple of hours.
But it also only stays in the system for a short time. 24 hours hours and it has pretty much all gone.
This is why it is common to start on a split dose - so that it works round the clock. Otherwise, as you approach the next dose after 24 hours, the thyroid can "escape" the impact of carbimazole.
However, once the initial suppression of thyroid hormone production has been achieved, it is appropriate to reduce the dose, and often change to single daily dosing. Whatever dose and frequency works for you.
Stopping completely, though, could be a concern. At least theoretically the thyroid could completely escape control by carbimazole and produce thyroid hormone at much too high a rate.
My suggestion is that, whatever you decide to do, whatever you have been told to do, always remember that you don't have to stick to a plan. If you start to feel hyperthyroid again, be prepared to restart at least some carbimazole - maybe 5 milligrams once a day - sooner rather than feeling compelled to wait the full three days.
Well your TSH has recovered very quickly - have you had the TRab rerun ?
You now look to be very hypothyroid and suggest you follow what your specialist is suggesting.
I was going to suggest you stop dead all this exercise you undertake - but looks like your body has decided this for you -
Your metabolism has now slowed too much and your core strength vitamins and minerals may well have plummeted - ask for ferritin, folate, B12 and vitamin D to be run.
My thyroid eye disease developed when I became hypo ( RAI thyroid ablation - 2005 ) and this may need to be monitored by another specialist -
I don't know of the routine in the States - maybe register with Elaine Moore on her forum as previously suggested and see if you can be signposted to a Graves Ophthalmologist in your zip code area ?
I have seen an ophthalmologist and am under their care for the TED.
I have not had Trab run again in bloodwork. I can ask for that on my next bloodwork.
Also I should clarify. I've been treated by my naturopathic doctor up until middle of November when I went to an endocrinologist who didn't like the naturopathic doctor stepping on toes. In November the naturopathic doctor wanted to reduce my initial dose of 30mg daily down to 15mg and the endocrinologist wanted me to stay on 25mg then retest in January. I stayed on 25mg daily until I started to feel awful in December and we retested and then the endocrinologist reduced my dose to 20mg daily. I continued to feel worse so we retested this week and those most recent numbers confirmed how I was feeling.
Also all of my doses so far have been split evenly through the day. Split up 3 times with the 25mg and 20mg dose and 4 times with the 30mg dose. This was my naturopathic doctors recommendation. The endocrinologist told me I could take it all once daily and it isn't necessary to split doses up through the day. I insisted I preferred splitting doses and continued splitting doses.
Currently the endocrinologist suggested stopping for 3 days then restarting 5mg daily. The naturopathic doctor seeing all the same bloodwork suggested just reducing my dose from the current 20mg daily to 15mg or 10mg depending on how I feel, monitor how I feel after a few days and reduce more or add more depending on how I feel. The naturopathic doctor also agreed I could do what the endocrinologist is recommending, but to closely monitor how I'm feeling and resume sooner if needed. The naturopathic doctor is happy co treating. The endocrinologist is not.
Oh I just found this reply by accident as you hadn't actually replied to anyone -
so no one gets notified they have a message to reply to -
sounds power for the course -
naturopath easy going and supportive - endo wanting total control -
endo will likely read blood tests and tell you how you are feeling -
whereas the naturopath is trusting you to read and start understanding your body and adjust the AT drug as you see fit :
Blood tests tend to run behind symptoms by a couple of weeks -
The official line tends to lead to conversations about a thyroidectomy or RAI thyroid ablation after around 15-18 months on the AT drug :
If well on the AT drug I would imagine this would be the goal of the naturopath and to phase out the drug all together when / if appropriate ;
We do now have some research papers - and the thinking tends to be the longer one is on the AT drug the better the long term outlook for the patient :-
I also am still on 20mg of propranolol a day. My endocrinologist had me on that from the beginning of this journey. I'm guessing I should taper off that now that I'm on the hypo side of things? He never mentioned stopping it at all in all of these medical adjustments
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