My TSH has gone way up even though I’ve been increasing the dose, and I feel worse than ever.
I’ve posted results from Nov. to May. See below.
In Nov, I was on 88 Levo four times a week and 75 for the rest. My TSH was 1.32.( Range: 0.20 – 5.00) FT3 and FT4 haven’t changed as much.
I was very tired but not half as bad as now. I was advised repeatedly to up dosage. I then took 88 and 94 once or twice a week. After April test I took 94 more often. I tried 100 on Sundays.
Now TSH is higher! My problem is that I feel very exhausted when I take 94 or 100, and all round worse: hyper symptoms too, so I can’t relax or dose in the day but still have to lie down. I also gained 11 pounds again, after having lost 20 this winter. No significant diet change before or since. Swollen belly again.
It doesn’t make sense that more Levo makes my TSH higher!
In theory as the TSH rises it's a sign that you need more thyroid hormone replacement :
However you have had RAI for Graves Disease so your HPT axis is not intact :
Your feedback loop is now broken and your thyroid gland burnt out and rendered disabled by having the RAI treatment so even if your Graves chooses to come back on the attack there isn't a gland there to be overstimulated nor drive up your T3 and T4 levels.
RAI has effectively taken away the end of the Hypothalamus - Pituitary - Thyroid feedback loop by disabling your thyroid in situ, and rendering your thyroid burnt out.
Have you ever had a scan after the RAI and know that the gland is non functioning ?
This feedback loop is broken and your thyroid will not respond in the same way as to when it was intact and functioning, though possibly " crazily and erraticly " when first diagnosed and way before you had the RAI treatment.
So it's essential that you are dosed and monitored on your T3 and T4 bloods and not a TSH :
Both your T3 and T4 are consistently dropping and at very low levels and just wonder if you have some sort of absorption problem ?
Are you on any other medications that may inhibit the absoprtion of T4 and do you make sure you take it on an empty stomach away from food - I know, sorry if I sound like I'm teaching you to suck eggs.
What suggestions are forth coming from your doctor as you must be feeling very unwell with these really low levels of T3 and unable to function.
In November your T4 was at around 46% and the May result shows it at just 23% :
I know you're been there before but maybe we need to look at different treatment options again.
No thyroid hormone replacement works well until vitamins and minerals are optimal, and I now aim for good 50% through the ranges with my ferritin at around 100, vitamin D around 100, with B12 around 500+ and folate around 20 :
Thank you so much, pennyannie. You've given me food for thought! Unfortunately I don't have a doctor. I tried the last one on the island with my latest results and he brushed away T3/ T4 with "this doesn't count"... No endos. on the island, except once a month (before Covid) and my experience with them since 2016 was no better.I could take more vitamins but do you think I should try NDT? I ordered some from Thailand a while ago.
When refused both T3 - Liothyronine and Natural Desiccated by the NHS I decided I needed to trial both for myself and set about self medicating.
Every book I had read on Graves post RAI thyroid ablation and every post on here where the O/P didn't have a fully functioning working thyroid was suggesting adding a little synthetic T3 to a T4 dose - and of course needing to supplement the necessary vitamins and minerals to aid the body in its abilty to utlise the thyroid hormone effectively.
So first I tried adding a little Greek Uni Pharma to a slightly reduced dose of T4 and it worked for me immediately in that my cognitive function improved, and I could think clearly and felt the immediately lift in my well being. I didn't seem able to get past 6.25 T3 and when I couldn't source Uni Pharma the replacement T3 from Mexico didn't suit me, and I couldn't continue this experiment.
I went back to an increased T4 of 125 mcg for around a few weeks and then switched overnight, swopping 125 T4 to 1/2 grain of NDT ;
Slowly, weekly I added 1/4 grain and ended up on just 1+1/2 grains and stayed on this dose for 6-8 weeks and then ran a blood test:
My T3 and T4 had swopped places !!!
Now my T3 was at 110% and my T4 at 25% through the ranges, I felt so well, and couldn't believe it had been that easy :
I seem to be on a relately low dose compared to posts I read, but this suits me best, if I raise NDT and higher I just feel uncomfortable in my skin :
I'm not 100% and still with some hypo symptoms but I'm so much better now considering all I went through having had RAI treatment and dealing with the unseen side effects this toxic substance can do in the body.
I still take adrenal glandular and the vitamins and minerals as detailed to us all :
I don't know if you can compare a synthetic T3/T4 combo to NDT but I very much doubt that I'd have ever found this combo of just 57 T4 + 13.50 on synthetics.
I think that if I ever need to switch back to synthetic I've now a starting point to work from which I'd have never dreamed of when starting out self medicating.
NDT is full spectrum thyroid hormon replacement and it does just seem logical to replace everything that was once supporting your health and well being : It's not perfect but a darn site better for me than any synthetic and if you have the NDT there, what have you got to loose ?
Thanks a lot for long answer. Will answer in length too, as soon as my energy rises a bit! as I have a few questions. Having my first cup of coffee...🙂
Re your 1st reply: I didn’t do a scan after RAI. I could see if I can have one done here, but what will it change?
- Only other med I’ve been taking for a few years, not regularly, is for blood pressure. I stopped recently after I was told by last two docs to first take my bp for 10 days, 3 times a day and then ask for advice again. (still working on it. I keep forgetting the evening one!). But I doubt that medication had an effect on absorption, since I’ve been taking it for so long and my thyroid results seem to keep on doing “their own thing”.
- Re T3: I did try Greek T3 first 6 years ago, 3 times a week (doctor’s orders…). Noticed no change and stopped. Then again two years and a half ago, and felt so hyper after 4 days that I had to stop. I was being followed by an endo in Athens. When he told me to take it only every 2 days and I posted here for advice, I was told he was incompetent because T3 has only a 24-hour “life span”, or whatever it’s called. So I stopped consulting that endo. who, by the by, was an exception to all the others, as he was open to all my suggestions, as in “You want to try that (or the other)? Yes! why not?” – lol…
- I ordered ndt and then also felt super hyper and stopped. It also seems complicated to take and I don’t remember where I filed those posts from helpful Thyr.UK souls.
- However… at this point I’m also feeling hyper + tachycardia and joint pain etc. and I’m between a rock and a hard place: I’m supposed to lower TSH and feel worse whenever I up the T4 dose, like almost instantly. So you might be right: what do I have to lose?
- But how do I go about it? Now I take T4 around 6 / 7 am and wait an hour before breakfast. This ndt is Thyroid-S with each capsule containing 60 mg. Now more questions: do I stop T4 entirely?
- How much ndt? Split up in the day? How long before or after food or coffee?
- How long should I bear with it if I’m feeling “all kinda weirds”?
Thanks for your patience! Your advice is reviving my hope…
I stopped 125 mcg T4 one day and started on 1/2 grain of Thyroid S the following day.
I've been taking my medication, whether T3/T4 or NDT at around 3 am to try and dovetail in with the circadian rhythm of the body.
Yo will need a pill cutter as 1 grain of Thyroid S contains a measure of T3 at 9 mcg and a measure of T4 at 38 mcg and it's all about going low and slow and finding your dose without blood tests and guidelines that were all introduced to be used alongside synthetic thyroid hormone replacement by Big Pharma.
I took my temperature, blood pressure and pulse twice daily while trialling NDT :
My temperature over 6 weeks rose from 35.4 to 36 6 and my other measures of blood pressure and pulse remained constant.
So, week 1 you take 1/2 grain :
Week 2 increase by 1/4 if you have no adverse symptoms :
Week 3 another 1/4 - so forth and so on until, AND IF you get to 2 grains when you then hold this dose for 6-8 weeks letting it bed in and then take a blood test to compare to your bench marks numbers of T3 and T4 from before you started :
If your T3 hasn't moved much from before starting and you still have all the symptoms of hypothyroidism you currently have - NDT may not be the best treatment option for you to be taking.
If your T3 has moved, and you feel improved and still with some symptoms you start againvery slowly increasing your dose by 1/4 grains weekly, fortnightly if it suits you better now you have a base of NDT to work out from, until you feel you have gone too far, and not as well as when on the previous dose - just drop back down to the previous dose, stay there for 6-8 weeks and see how you feel and maybe where your bloods have levelled off to.
Some people dose twice a day - I never did :
Some people add a little T3 or T4 if they feel the fixed rato in NDT doesn't suit them when very close to finding their " sweet spot " - I don't know if i ever found this sweet spot - just know this is where I usually feel as good as it gets for me.
Only a few more questions: basically I take 88mcg T4 (and keep trying 94 a few times a week). So half a grain might be too much? I have a pill cutter.It seems that trying to add T3 first, before going ndt, is not useful as synthetics are a "different beast" altogether, do you agree?
My only hesitancy is that before my TSH shot up and the others declined I was told here that I'm a good "converter". (?)
Anyway, if I got it right, I only test again in +/- 10weeks?
Last but not least: did you feel better right away or did you have to suffer the torments of hell at first and for how long?
(I've been putting up with so much discomfort and so many pains that I've become less tolerant ! Though they say it's supposed to be the other way around -- but "once bitten twice shy")
The Levo takes around 6 weeks to fully leave your body and over that period of time you'll switch to NDT :
1/2 grain = 4.50 T3 + 19.0 T4 -
and then
1/4 grain increments are just 2.25 T3 and 9.50 T4 :
I am also a good converter and probaly why my dose of NDT is relative low compared to other people on here, some of whom, actually still have a thyroid ;
We have " lost " our own T3 production which is said to be about 10 mcg T3 daily :
I believe it is imperative to replace this T3, so to kick start our own metabolism and conversion, irrespective of which ever thyroid hormone replacement we take.
There arefull details on my profile page as I don't wish to go into all this again on here.
Yes, I read yr. profile page. You’ve certainly been through a lot! And now you’ve given me hope. Your answers are a life line. I felt like I was out at sea, not yet drowning but on my last reserves and you were like someone relaxing on a sturdy raft. Sorry if I leaned over the side for so long and, again, I’m very grateful for your patience and your advice. I also hope I’ll be able to help others some day.
I wish you a lovely evening and weekend, pennyannie 😀
Thank you for your suggestion.Yes I did coeliac blood test. Negative.
I can't do strictly gluten free diet. I tried and stopped rusks in the morning. My diet consists of vegies, now from the garden, plus potatoes, beans, rice, eggs, fish, some chicken, fruits & yoghurt. Lots of pure bio olive oil. No fried food.
But there are no gluten free beers here and I can't do without a few beers in the evening , especially when friends comes by, after a day of total weakness -- and now anxiety -- because I can't do what's needed, and have no one to help me. I know many people feel better when they're gluten free. But I don't believe that this illness, or dis-ease, is due to gluten.
I have no family and the "friends" I mentioned are only people that I have a "commercial" relation with. That's the reality of the Greek island I live on.
PS. I stopped beer for two weeks and felt even worse.
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