I previously posted requesting any recommendations for a local endo and totally understand why this was shut down but thought it would make more sense to ask a separate question for the second part of my post.
It’s now about 10 years since I last saw an endocrinologist and have been managing my thyroid with T3 and liothyronine with brand specific Mercury pharma (think they’re back to being called Eltroxin?). Everything seems to have gone a bit haywire the last 18 months or so and I have become hyper. Reductions in my dosage don’t seem to be bringing me out of that where they usually do and I’ve had some weird readings where my TSH has gone down but my FT4 has gone down with it and vice versa when they should go the opposite direction to each other.
I have Hashimotos so I know this can account for a lot of anomalies and I am menopausal which may also be connected but my brand of meds is difficult to get hold of and with other tests I’m having done I’m thinking it’s time to review everything. It’s been so long since I’ve looked at anything that I don’t even know where to start. I noticed posts about new meds for hash’s for example but haven’t found a lot of info on this.
if anyone else has any hints or tips of where to start looking to save me a lot of headaches tracking posts through it would be very much appreciated.
also if anyone is treated by Maidstone or Tunbridge Wells hospital I’d appreciate a PM to discuss local care.
many thanks in advance
Edit: sorry I should have added I’ve come down from 175 thyroxine and 20 T3 to now taking 125 and 20 but my last TSH was still 0.19 coming up from 0.04. I’m just waiting the most recent test to see if it’s come up higher but still feeling very hyper
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It's not having a low TSH that makes you hyper - or even causes any symptoms - it's having very high levels of FT4/3. So reducing your dose with the single aim of raising your TSH is a futile exercise. Ignore the TSH, it is irrelevant unless it's high. Once it goes below 1 it doen't give you much useful information.
As for new medication for Hashi's, I haven't seen anything like that. What sort of medication would that be? Because as far as I know, there is no treatment for Hashi's. Maybe you're thinking of some new brands of T3 and NDT that have appeared on the market?
I’ve seen comnents regarding low dose naltrexone but not sure if it’s a recommended treatment on the NHS.
And I understand what you say about TSH but unfortunately it is the only reading that the gp now takes so it has to be my guide when combining it with symptoms. In my case I know my TSH has to stay in a narrow band of 0.2 to 0.8 so it’s a useful way of seeing if my symptoms may be caused by my thyroid rather than one of my other comirbidities so it has it’s uses.
Hence mentioning it’s been about 10 years or more since I stopped updating myself as I’ve been quite settled and had more pressing comorbidities to deal with. So basically any major advances in the last 10 years so I know where to start looking would be great 😁
é2I don't think there have been any advances in the past ten years. LDN is a lot older than that. People of forums were talking about it when I was first diagnosed, 24 years ago. Pretty certain there's been nothing new since.
that’s odd - I’d never heard of it before today. You live and you learn. I think I was asking about advances more in hope than expectation so I’d know if there was anything I needed to pick up on. Many thanks
Essential to test vitamin D, folate, ferritin and B12
Lower vitamin levels more common as we get older
For good conversion of Ft4 (levothyroxine) to Ft3 (active hormone) we must maintain GOOD vitamin levels
What vitamin supplements are you taking
Also VERY important to test TSH, Ft4 and Ft3 together
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
T3 ….day before test split T3 as 2 or 3 smaller doses spread through the day, with last dose approximately 8-12 hours before test
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Hi Slow Dragon. The only thing I didn't do that ties in with that was to split my T3 the day before as that wasn’t something that was recommended in the past so I’ll keep that in mind next time.
I should have clarified in my post that I’ve been on this rodeo for quite a long time now so know that my TSH will be low and as I’ve mentioned above I do need to keep it that way. On this occasion based on symptoms I am definitely hyper and staying that way for some reason.
I’m on 2000 iu daily of vitamin D - I’m not sure if endocrinology still recommend 1,000 but I have lupus and was recommended to double it earlier this year as rheumatology have a higher recommended level. Plus I have rare photosensitivity which means I get very little natural light so in my case it’s really important.
B12 is fine but ferritin has been getting higher over the last couple of years which I’m getting told is due to inflammation with other conditions and nothing has been done as it’s not high enough to trigger anything - I’m not sure if that could be thyroid related but inflammation would tie in, Folate was low but treated last year and now back to middle of the normal range. All over tests are fine.
I can’t find what I’ve done with my last test result on vitamin d but it was staying at a decent level on 1000 so I was surprised when they said increase it. It hasn’t been tested for a while though so that’s one I probably need to push to recheck. Folate and B12 are both at good levels - pretty much middle of range - but again they’ve not been checked in ages. I’ve just had a private DHEAS level cone back at 0.1 again despite my cortisol level being ok and my SST test showing my adrenals can work so I think I’ll be pushing to see if there’s a pituatry problem and make sure they rerun everything at the same time so thank you
I would get FULL thyroid and vitamin testing as next step
With Lupus, presumably your hypothyroidism is autoimmune (hashimoto’s)
Are you on gluten free/dairy free diet
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
T3 ….day before test split T3 as 2 or 3 smaller doses spread through the day, with last dose approximately 8-12 hours before test
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
I've found I need 3-4000iu of Vit D and I'm out and about several hours a day, wow, that is really low DHEAS, I've certainly noticed a difference since adding some to my regime, my DHEAS is within range but free saliva levels were low but now much improved
My DHEAS has been that low for a while now. I’ve been being given steroid injections instead of any other treatment with Rheumy the last few years so had a private appointment with a better one who suspected that my adrenals may not be working properly as they’ve over medicated me. My short synacthen test came back fine and my cortisol level is below optimum but not low enough to back up a diagnosis but I think it’s misleading them. My cortisol has come back at 340 this time but my DHEAS is 0.1, my testosterone is shown as <0.087so presumably they don’t test below that, my SHBG is 33.6 and they couldn’t do a free androgen index because my readings were too low to calculate. So now I think my endo needs to decide whether it’s a pituitary issue or if my cortisol level isn't reliable with the amount of steroids I’ve had and although my adrenal glands can work they aren’t. We’ll see where it leads from here because the readings are bad enough that they can’t just sign me off!
I think if you pass the SS test ( I did) then they aren't interested, it's very much black and white with them as adrenal fatigue isn't acknowledged, have you done a saliva cortisol test? I resorted to adrenal cortex and then switched to a few months hydrocortisone and then switched back.... so far so good 🤞
So are you not on any HRT either? I find testosterone essential to stop be feeling like a complete flake, with your SHBG so low it shows you could certainly do with a boost in the sex hormone department
Nope not on anything at all. I tried HRT patches a couple of years ago when the fatigue started to get bad and I was having awful flushes and it did nothing. I’ve since had my coil removed and can’t go back on HRT without that going back in as I’m positive for lupus anticoagulant. It was a nightmare taking it out because I was cramping so badly I was in agony so not keen on them putting it back in.
No saliva cortisol just bloods - first one was 240 ish, 2nd one a month later was 440, the one 5 weeks ago was 335 and last weeks one was 340. I was told it’s not a reliable judge with my steroid history though. Interestingly the SST gave me a real boost for about 4 or 5 days where all the heavy tired lifted and it was like a steroid injection before I crashed again which tells me my adrenals can work but possibly aren’t. The DHEAS would tie in with that.
The endo came back and said at my age (🙄) endo don’t treat adrenal insufficiency so I need referring to the menopause clinic. Seeing as how he’s never asked me about my symptoms (I was referred in specifically for the SST so we never got that far) I have been transferred to another endo for a follow up at my request. There’s enough to question an adrenal problem or pituitary and I now know what’s causing my symptoms but I need to find what’s causing the cause - it could be where I end up but I’m insisting they at least talk to me first!
If your steroids have lowered cortisol than maybe you could use the CT3M method to boost it. For pituitary they should have tested ACTH but with steroids in the picture and lwo cortisol it all sounds more like a HPA axis diregulation.
They are saying my cortisol is normal - it’s at 340 so not optimal but not low enough to flag. I think they should test the ACTH too as strongly suspect it will be low - I felt so much better after the artificial one on the SST. I’m going with it being my adrenals are spluttering but there’s enough cause to rule out a pituitary tumour or looking at HPA. I’ve been assigned a new endo for follow up and I’m going to try and see my original endo privately for an opinion as he was superb and then go from there.
When I say original endo I mean the first one from 15 years ago who diagnosed my thyroid. The original this time round just looked at my results and told me I need to talk to the menopause clinic for treatment without knowing my symptoms or looking for the possible cause. Lazy diagnosing at best - failure to actually treat me and dangerous attitude at worst!
CT3M is to boost cortisol by using T3 within the circadian rhythm. If you haven't read Paul Robinson's the Thyroid Patient's Manual or Recovering with T3 you would not have heard about it. He is a real expert on both thyroid nad cortisol with years of experience in treating both.
hello - I’m under Tunbridge Wells and Maidstone too. But I don’t really think I can help. My only apts with nhs endocrinologists have been phone apts and then after being put on levo and having it raised later, I’ve just had letters signing my out of their care each time - back to my dr. I’ve had some private tests done which have helped, as have people on here, but I feel like I’ve just been discarded by the nhs. If you find a good one can you please let me know 😁
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Update I had a discussion with the endocrinologist today I think I need to be more assertive next time . Will I NEED T3 
has anyone felt not great on T3?
New results and impending endo chat
help please new results in
TSH 48.90 help 
