You guys were great at helping out before. I was having problems with thyroid……again. With my parents help I was able to go to a private endocrinologist and obtain Erfa NDT. So three months ago I started on half a grain in the morning, half in the afternoon. Felt great. Then we did some blood tests and everything was still out of kilter so it was upped to one grain morning half in the afternoon. Then three weeks level one grain in the morning , one in the afternoon.
I was feeling superb……until it was upped to the last level. One grain in the morning, one in the afternoon.
Now I’m back to joint and muscle pain, all over. The pain is insane! Head and eye pressure (I have TED anyway), anxiety rising, mood sinking, heart pain……and would generally just like to lie on the floor. Is it a possibility that I’m taking to much. It feels like I’m almost ‘speeding’ at times and then it crashes. As I say this is only since it was upped to two grains a day.
I had hoped that NDT would be the magic key.
As like many of you this has been an 18 year journey with RAI to sort overactive Graves , which resulted in under active…….and lots and lots of rubbish medications. Found out I was lactose intolerant, so ended up on liquid levo, that still didn’t ease the physical side, hence going private with mum and dads help…..but here I am again.
Any advice as you are all usually fantastic with knowledge? Am I overmedicating?
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Just wondering if you ever got your vitamin levels tested from your previous post? Being hypo casues low stomach acid which means we get low vitamin levels as we can't absorb from food well. This in turn causes issues with taking thyroid hormone.
Hi Jaydee1507 . Thanks for your message. I am getting a physical copy of my bloods this week as they were read over the phone. I did have vitamin tests done and was told they were ok, but I will post them here when I get the paper copy. Thank you.
I was feeling superb……until it was upped to the last level. One grain in the morning, one in the afternoon.
Why not go back to your previous dose where you felt well, stay on that for 6-8 weeks for levels to settle and decide what to do from there. If you were feeling superb there did you tell the endo? If so I'm puzzled as to why he would increase again, watch and wait would have been better.
hello, he left instructions to increase as had to miss one of our appointments due to family bereavement.
The time I felt the greatest was when a previous endo told me to stop all meds…..but when they did my tests the TSH had gone up to 68.9. Yet I felt great! I’m obviously a weird one!
I too have Graves Disease, diagnosed 2004 and went through RAI in 2005 and I too was very well for a good few years and then everything went pear shaped - read my journey on my profile page.
I too suffered thyroid eye disease after RAI and I too am now taking NDT and am much improved and self medicate.
It reads as though you have increased your doses too quickly - so suggest you first cut back this last increase and allow your body to readjust.
NDT slowly builds in the body and needs time to ' bed in ' and you are now sounding like you are overmedicated., but don't worry or get stressed, simply drop back down to the previous dose you thought worked well for you which I think would be 1 + 1/2 grains and, if feeling comfortable, stay on this dose for around 6-8 weeks and then run a blood test and see where your levels of Free T3 and Free T4 then sit.
If you are using ointment, drops or potions to ease the eye soreness please just make sure all your products, including those from the doctor are Preservative Free.
The Levothyroxine takes around 6-8 weeks to fully leave the body and in this time span the idea is to slowly build up your dose of NDT in 1/4 grain increments.
Before I started I made sure my ferritin, folate, B12 and vitamin D were at optimal levels and I had bench readings of my FreeT3 and FreeT4 :
I stopped 125mcg T4 one day and started 1/2 a grain the following day and went up by 1/4 grain increments weekly and I monitored my blood pressure, pulse and temperature twice daily during this experiment.
When I got to1+ 3/4 grains I felt as though I was getting a bit anxious and uncomfortable in my body and just not as ' well ' as the week before so I dropped back down to 1 + 1/2 grains and stayed on that dose for 8 weeks and then ran a blood test just to see what was going on.
My T3 and T4 had literally swopped places from when on Levothyroxine - and now my T3 was at 100% and my T4 at just 25% through the range - I felt very well, and my blood pressure and pulse had remained stable with my temperature slowly rising from 35.4 to 36.6 where it hovers most days now, some 5 years later.
Do you have a copy of the blood test that ' looked out of kilter ' you can share with forum members ?
On NDT your TSH will be low / suppressed and that's ok :
Your T4 will likely be lower than when on T4 - Levothyroxine -
BUT you T3 should be proportionately higher than when on T4 only medication.
thanks so much pennyannie . I am getting a copy of the actual blood results so will post them here as I got them over the phone. Your response is super helpful. As I say I felt great on it until we hoiked it up. Today I am to get prism glasses? to try and help with the double vision. Thanks again. I hope you are feeling well currently.
I don't know if you have this information already - I found it in the Harmony magazine that Thyroid Uk the charity who supports this forum sends out to members -
ncbi.nlm.nih.gov/pubmed/306... - it's not good reading but at least acknowledges some of the issues faced by unsuspecting patients having been treated with RAI:
I found the Elaine Moore Graves Disease Foundation website the most well rounded of all my searches, although 10 years too late for me to refuse RAI, and we do need to become our own best advocates as Graves is still a poorly understood and badly treated auto immune disease. elaine-moore.com
take a day or two off - or until you feel better and then go back on the dose that you felt best on - like 1.5 grains perday. You optimise NDT by how you feel not blood tests. You may go up to two grains one day - but there is no rush . I wouldn't say any thing to the Endo so you have the spare .5 grains up you sleeve for a raining day.
Agree with the above. The key and determining parameter should be how you feel. Blood tests are useful as they give some indication of what is going on, can guide the direction of medication and also the results are peculiar to you but they are secondary to how you feel ie your health.
You're describing this as something negative. But what may have just happened to you - feeling good on one dose, and then increasing to find you feel much worse - is kind of the ideal of adjusting your dose. If you can draw a line in the sand and say two grains is too much for you, and 1.5 grains was pretty great, then that is perfect.
Because your presenting it as a negative I guess it isn't that simple? You don't say loads about how you felt on 1.5 grains, except superb. Does that mean completely better and somewhere you'd be happy to be long term, or does it just mean getting good improvement but still very unwell? If it means completely better, then that is great. You can stay on 1.5 grains longer term and see how you feel. You've always got the option to adjust your dose again in a few months or a few years or any time in the future if things changed and you feel less well.
If 1.5 wasn't completely well for you you've got a few options. As someone above suggested, slow down how quickly you're adjusting and go back to try 1.5 grains again, but this time stay on it 6 whole weeks and then get full thyroid panel blood tests to get more information on where you are.
You've been adjusting by half a grain at a time, which is quite a big jump, so you could change to quarter grain adjustments, and maybe try increasing to 1.75 grains next time. Stay on that for the full 6 weeks and get blood tests. Following those blood tests, and considering alongside symptoms, you can then decide what to do next, either return to 1.5 grains, stay on 1.75, or increase again to 2 grains, depending on how you feel. It may be that after adjusting more slowly you feel better on 2 grains so it may still be an option.
An alternative to that path would be to try and stay on your current dose of 2 grains for the full 6 weeks and have a thyroid panel blood test. In general I always try and stay on any new dose for the full 6 weeks so I can get more information about symptoms. Sometimes you feel terrible for a few weeks but they settle down and come to prefer that dose. At the same time it is always good to get a blood test and full symptom notes because it is building up your knowledge to help close in on your ideal dose.
That is always a judgement call, though, it's up to you to say if it's completely unbearable.
These comments are entirely about thyroid dosing. If you haven't got your vitamin problems or other areas sorted, then you may be better off doing those first. Perhaps hold on 1.5 grain for a longer time while you work on vitamins and then try to raise again later.
Alongside this you may need to manage your Endo, or compromise due to cost. But it will be useful to see what they say if you return and say you think you're overmedicated. That's the point where you will find out of they've got a useful response.
brilliant. Thanks for that. Ok…..so on one and a half grains I was able to dance again, which was fantastic ….unbelievable after so long not being able to. (I used to be a professional dancer ,it’s not just a random comment) on two grains I was completely seized up,joint and muscle pain wise, so I will be reversing and going back to one and a half. I almost felt like a human being again,.
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