I'm at a bit of a bump in what's been a fairly stable couple of years and hopeful for some advice to get back on track. I've noticed my symptoms have been gradually returning since around Sept/Oct, weight gain, dry skin, constipation, fatigue, difficulty concentrating, basically everything I had before. Not yet quite as severe but I have some days worse or better than others.
I am on 100mcg T4 and 10mcg T3 and have been stable on this since May 2018.
The last time I tested when I felt well was Jan 2019 and my results were
TSH 0.007 (0.27-4.2)
T4 20.3 (12-22)
T3 6.22 (3.1-6.8)
Before this in Aug 2018, feeling well, T4 was slightly high but Endo wasn't concerned and kept me as I was.
TSH 0.012 (0.27-4.2)
T4 22.7 (12-22)
T3 6.18 (3.1-6.8)
The only real symptoms I had at this time was long periods but I have PCOS also. I did have days where I would feel particularly fatigued and need a nap if I'd done too much but they weren't as often and I think that's normal.
So in October I had to see the endo nurse instead of endo (i think because endo was happy and I was stable so just for monitoring) at this point i could feel symptoms starting to return. Anyway we had a very heated discussion over my TSH because it was below range. She was telling me we NEED it otherwise I'm at very high risk of osteoporosis, fractures and heart problems. I asked why as my T4 and T3 were fine but didn't get a straight answer other than we need TSH too or i'm at risk. I kept challenging it and pointed out it had been below range for a while but endo was OK with it. So she has referred me back to his clinic and I'm due to see him end of May.
My results then were
TSH 0.009 (0.27-4.2)
T4 17.4 (12-22)
T3 5.93 (3.1-6.8)
Having just thought about it, at some point during this time, approx 1 year ago I had to drop T3 dose from 12.5mcg to 10mcg because it started being prescribed on the NHS and they could only get 20mcg tablets for me to split to 10mcg whereas I was buying 25mcg and splitting to 12.5. But they said it was such a small change it shouldn't make a difference.
My symptoms have continued to return and worsen so I retested recently. I have now regained 5.5kg of the 18kg I lost when well. The only things that have changed recently is I started playing 5 a side once a week since the end of Jan and I have been taking my folic acid and vit d religiously (i'd forget often) I'm struggling with recovery after football, I can barely function a couple of days after and have DOMS for about a week. I realise part of this will be due to not playing for so long whilst unwell but I'm really enjoying it and it's helping me feel a bit more like me again. My last 2 periods have been 7 and 8 days whereas before would be 9-17 days. I'm hopeful this is due to being more consistent with vit d and folic acid.
All my other levels are good. I have b12 injections every 8 weeks. Ferritin, folate and magnesium are all fine. I did have a slightly raised MCHC when last tested in october 352 (300-350) but they said it was fine. Vit D is 125.
My recent results were taken after missing football for 2 weeks due to holiday. I'm wondering if I should retest a day or 2 after I've played also to see if I need extra T3 to help recover?
They were:
TSH 0.006 (0.27-4.2)
T4 19.2 (12-22)
T4 5.58 (3.1-6.8)
I'm a little confused how T3 has dropped but so has TSH. T4 has raised but I think before my October test I'd missed a couple of tablets in the few weeks before it.
I don't think my endo is going to allow me to increase T3 as my TSH is so low. Is there anything I can do to get it a bit higher? Do we actually need it or am I just trying to please them?
I know these results don't look bad but I've never felt like my levels reflect how I'm actually feeling, even at my worst. At diagnosis my T3 was still 4.9, and the lowest it ever went to whilst on levo was 3.78, tsh was 2.52. So I think maybe I'm just one who needs my levels high/tsh low to feel well.
I want to act now so I don't end up back where I was before anyone will listen to me. We're also planning pregnancy so I want to make sure I'm as well as I can be. I've worked so hard to get well learning about it, getting all vits and minerals right, going gluten free, fighting with drs and self medicating
So I'm wondering about asking to drop T4 and increase T3? Possibly dropping to 75mcg T4 and adding in 5mcg T3 in afternoon to my 10mcg morning dose. Any suggestions on dose or ways to persuade my endo?
Also - my antibodies have been continually dropping since i started medication. They have now been in normal range since Aug 2018 and have continued to lower. Does that mean I don't have Hashi's anymore? And if I don't have antibodies attacking my thyroid any more, how can I feel unwell again?
I'm sure I had something else to ask but I've forgot
Thanks
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Salphy
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Oooh, the doms and football recovery, Have you considered a saliva adrenal test? In your shoes thats where i would be investigating.
The nurse is a little confused. Her belief stems from the fact that people with graves disease, and raging thyroid levels are prone to osteoporosis. There is no conclusive evidence as far as i am aware, that giving exogenous thyroid medication causes the same problem. No one would medicate to the levels experienced by Graves patients.
Thank you. I didn't think there was a reason but I wanted to double check so I'm prepared if they try to argue it again.
No I've done an AM cortisol around when I first started T3 which was a little high but they said normal then a 24hr urine cortisol in March 2019 that was normal.
What would the saliva test tell me and how would it be treated? Do you think it's worth doing after football?
The saliva test, tests where your cortisol level is at several points throughout the day. Ideally in the morning it should be highest, gradually falling throughout the day. My test, some 9 years ago, showed that i had ok levels first thing, but by 11 am, they had dropped to bedtime levels and i was fatigued for the rest of the day. It was taking me a couple of days to get over a single session with a personal trainer.
My personal remedy was to get a cortisone dosing schedule, and i took cortisone flr about a year, tailing off as needed.... i also stopped the personal trainer. However, Other people do very well with rest, relaxation, sensible eating, licorisce, ashwaganda....
Theres a really good rt3 adrenals site, which arose from an old yahoo forum..... if i can find the link i will post it.
Don't do the Medichecks one. It has some of the ranges with zero as the lower limit - if anyone did actually have a level of zero they would be rather ill! They also only test cortisol and you need cortisol plus DHEA. Testing DHEA as well as cortisol helps with determining stages of adrenal fatigue. In the initial stage, both cortisol and DHEA will be high, the more we struggle to produce stress hormones then DHEA will lower, and more advanced adrenal fatigue then cortisol will lower too. My simple explantation, more info out there to research if you want to.
Test code is END01. A bit more long winded to get your results. They send them to ThyroidUK and once TUK have received your consent form (details on the page linked to) they then email them to you.
It tells you on the website. Turnaround time says 14 days. I have sometimes had my results back within 7 days.
Do you have to fully spit in it or is it more of a swab? Spitting in it sounds awful and not something I want to see in a tube haha!
Not a swab. It's a small tube. You don't "spit" in the normal sense of the word. You put a straw (provided) into the tube, then use the straw to transfer saliva from your mouth into the tube. No actual spitting involved.
The tubes are coloured so are opaque, you can see that the saliva is in there so you know when to stop, but you don't actually see it.
Also - my antibodies have been continually dropping since i started medication. They have now been in normal range since Aug 2018 and have continued to lower. Does that mean I don't have Hashi's anymore?
No, it doesn't. Antibodies fluctuate, but Hashi's doesn't go away. And, anyway, the less there is left of your thyroid, the fewer antibodies there will be in your blood.
And if I don't have antibodies attacking my thyroid any more, how can I feel unwell again?
TPO/Tg antibodies do not attach your thyroid. It is the lymphocytes from your immune system that attack the thyroid. The antibodies just come along to clean up afterwards. And, it's not they that make you feel unwell, anyway, it's low or high thyroid hormones. Or low nutrients. Or many, many other single things, or combinations of things. But, not the antibodies.
I had an ultrasound on my thyroid in 2018 which said all was ok no nodules but it was very small. So maybe it's small because the damage has been done and so antibodies have now dropped off.
Thank you. I was convincing myself I must be crazy. But that's what I did in the beginning!
It's only because medication has made me better before, after I fought for it, that people believed me and took me more seriously because my blood levels have never looked too severe.
Is it possible that the 2.5mcg drop in T3 dose could be the difference? I had completely forgotten about it until I wrote this post yesterday.
I checked my emails and I ordered thybon Henning 20mcg from Germany end of November 2018 so would probably recieved and started them around December 2019.
Jan 2019 was the last time I was tested when I felt well and t3 was 6.22 and it is now 5.58.
I think I was on thybon for around 2 months before they changed me from private prescription to Iraksin 20mcg on NHS.
It does to me seem so small and pathetic to be asking over 2.5mcg but on my last 3 tests my t3 has slightly dropped each time and I'm feeling symptomatic again. I don't want to leave it to get worse and undo all the progress I made.
2.5 mcg is only a very small amount, but it has obviously had an effect on your results and - most importantly - how you feel. The problem is, what to do about it. You cannot get 2.5 mcg tablets, you won't even get 5 mcg tablets on the NHS - probably won't get any sort of increase at all until your FT3 has dropped quite a bit. I'm afraid I don't know what the solution is. Sorry.
I read somewhere recently, though would have to do some digging to find it. That there are now 5mcg tablets available on the NHS.
I will have a look for it now.
I could split one for 2.5.
Or I was thinking of reducing t4 and increasing t3 so maybe dropping t4 to 75 or alternate 75/100 and adding in 5mcg t3.
I wonder if dropping t4 would make my TSH rise a little also as I feel adding 5mcg without dropping t4 would make it go completely.
I'm also going to get my 24hr cortisol tested again I think. Because since starting football I seemed to have gained quicker than I was doing and without eating any more.
Just feels rubbish to be back in this position after being stable and well
There may be 5 mcg T3 on the NHS, I don't know, but getting them prescribed would be another matter. They'd obviously be more expensive than the 20s, so less likely to be prescribed.
Or I was thinking of reducing t4 and increasing t3 so maybe dropping t4 to 75 or alternate 75/100 and adding in 5mcg t3.
Might work. Depends on how well you convert. So many variables. You'd have to try it to find out.
I wonder if dropping t4 would make my TSH rise a little also as I feel adding 5mcg without dropping t4 would make it go completely.
Doubtful, but why would you want it to rise, anyway? If it's that low, it's because you don't need it anymore.
I'm also going to get my 24hr cortisol tested again I think. Because since starting football I seemed to have gained quicker than I was doing and without eating any more.
I think that has less to do with cortisol than with the football. Maybe you should be eating more to keep your calorie up. The football is using up the calories you need to convert. Maybe that's why your FT3 has dropped.
Good point. So frustrating. I'm lucky to have a decent endo but he tells me he cant prescribe t3 the hospital pharmacy wouldn't dispense it. Only ndt. So he asked my gp to prescribe on private prescription which they did. However 2 months later there was a big panic over it at the gp they told me they should never have prescribed it and can't and it was a locum dr who had and the ccg are telling them no...
So I called the ccg who said they would look into it but it would be a week or 2.
To then getting a call from gp surgery he next day we have decided that because it was started by endo we can't stop it do it's going to be prescribed on the nhs now.
Never heard back from ccgs' "investigation"
Only reason for wanting to raise tsh is so endo nurse doesnt panic again and i worry if gp saw it they would stop my t3. I dont want them to have any reason to stop it.
Hmm you might be right! It's on late and 40mins drive away which is why I've not been eating at tea time as I'd be sick and getting home too late to eat much afterwards. Then eat as I normally would the following day. I did try taking my t3 later in the day the last time I went and it seemed to help a little, or maybe I was just getting more used to it again, or hadn't put as much effort in as not many turned up.
I'll do some experimenting over the next few weeks. I still have some 25mcg tiromel and 20mcg thybon left over possibly also have 25mcg levo somewhere
I'm not sure if I should just do it and go to the endo in may saying this is what I've done this is what has and hasnt worked.
Or wait to see him and see what he advises
You've given me lots to think about anyway and reassured me to keep pushing on and not ignore it thinking I'm just crazy again so thank you.
The only way to raise your TSH would be to stop the T3, and that would be stupid. That nurse can panic as much as she likes, she's just showing her ignorance. If you have enough T4 and T3 in the blood, you do not need TSH. It's not a thyroid hormone, it's a pituitary hormone, and it only has two jobs: a) it stimulates the thyroid to make more hormone (so it's redundant as far as that is concerned) b) it stimulates conversion (but as you're taking T3, you don't need it for that, either). It has nothing to do with hearts or bones. So, try explaining that to the nurse, see if she can understand. She's obviously been misinformed.
Thanks so much. This was the info I was looking for. I kept asking her reasons why. And pointing out my t4 and t3 were in range. But that's all I had.
And all she had was that it increases risk of x y and z.
I didn't know if it had any other uses and I don't think she did either! So we were both arguing our point of view without either being fully convinced we were right. Which is why she's sending me back to the endo. I'm now so glad I was right and stuck up for myself so she couldn't make any changes.
Hopefully the endo see's my point of view too..
He is very pro NDT though and I'm worried he might move me onto that rather than change t3 dose. I like having more control with t4+t3.
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