I had thyroiditis many years ago. Since then, my dose of levothyroxine (and for a while NDT) has varied. However, it has never been a high dose (I don't have any record of it going over 100mcg/day), it has been as low as 25mcg/day, but settled at just 37.5mcg/day (driven by me, based on combination of symptoms and bloods). That doesn't quite get my TSH below 2 anymore (it used to), but it's very close. If I increase the dose to 50mcg the effect is not great - it's hard to describe, but I feel fizzy (yes, fizzy, not fuzzy) with a feeling of too much coffee on top. It's been a while since I've tried reducing the dose, as I tick along ok on 37.5mcg. I did feel even better on NDT, but haven't taken that for a few years.
I've recently been diagnosed with adrenal insufficiency (AI), believed caused by the steroid in my asthma inhaler. The endocrinologist that I saw the other day for the AI noted my low dose of levothyroxine, and ran off a list of reasons why in the long term being on such a dose might be bad for me. TBH, I was very dubious about some of the stuff he came out with regarding the AI (some of which sounded downright dangerous and some of which I suspect he has no experience of doing before as AI is so uncommon), so I really wasn't too attentive about what he said about the levothyroxine. However, he has now written to my GP recommending that my levothyroxine be stopped, along with a protocol for trying to reverse my AI. I have written back to him suggesting a different protocol, including staying on the levothyroxine until everything else is sorted out. Unless he rolls over and updates my GP with the protocol that I've suggested, I expect an argument with my GP shortly.
Does anybody know of anything that would back up the endo's claims about damaging effects from long term low doses of levothyroxine (so low that they don't even get the TSH under 2)? I've been on a low dose for 12 years, so if it's a problem why has no endo mentioned it before?
Also, does anybody know what the process is for getting a second opinion or for getting referred to a unit elsewhere in the country with more experience of particular conditions?
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That's an odd one as 37.5mcg is a tiny dose and wouldn't be a full replacement unless you weigh less than 25kg so he is quite likely right that you'd be better off without it and getting your adrenal insufficiency sorted out
Things have obviously changed and a rethink is needed, most of us would be delighted to see and Endo that acknowledges AI is a thing
I think we have a vocabulary problem here, because for many people AI and Addison's are the same thing. So, I guess the question is: how do you define AI?
I think you are right, it doesn't become a named thing until it is life threatening but you feel bl@@dy awful before then but adrenal fatigue doesn't exist in the NHS so you'd need to get them to investigate your HPA axis
It is the same thing and as TiggerMe has mentioned, it’s adrenal fatigue that is generally not recognised, often touted as within range blood serum levels.
I know you both are very knowledgeable so just adding this for the benefit of others who may not be.
It's the usual thing they are happy to ignore a chronic illness and only treat when it becomes life threatening which is a really poor way to deal with health
OK, yes, agreed some people do think that AI and Adrenal Fatigue are the same thing. Others insist that AI is Addison's. And people can get very shirty if you use the name 'AI' in the wrong context - believe me, I've had one or two 'lively' discussions about it on here. I don't think it's as clear-cut as all that what people mean when they use either term. I usually ask them what they mean so that I know exactly what they're talking about.
Oh, and by the way, it was me that said Adrenal Fatigue wasn't recognised.
That’s interesting to know. I was of the view that there was no doubt AI and Addison Disease are the same thing.
I am guessing then AI and Addison Disease disputes arise when there are such differences in health care for diagnosis and treatment globally. Much like the different TSH thresholds.
Well, I agree that would make sense. But, when you have doctors who are so rubbish at vocabulary, and use all these terms as interchangable, it's not surprising you have patients who are not sure what is what. So, in terms of this forum, it's best to define what they mean by what they say before discussing it. Because they might have been told something totally ambiguous by their doctors.
Insufficiency just means not enough. But it doesn't give a degree of by just how much you fall short. And, to be honest, the description could mean either, because with both Addison's and Adrenal Fatigue you are lacking in cortisol. It's just that the lack is greater with one than with the other.
TiggerMe I may be missing something here. For somebody who is hypothyroidal, producing some thyroid hormones but not enough, why would the target dose be a full replacement rather than just enough to get the FT4 and FT3 to where they want to be?
As someone who takes less than full replacement dose of levothyroxine, I do NOT consider full replacement to be a target.
My target is to feel as well as I can and that seems to need my TSH to be below 1, probably slightly below bottom of reference interval, and FT4 well up the reference interval.
However, this is because even with a sufficient dose of levothyroxine for me to hit my targets, my own thyroid seems not to be fully suppressed. I think I am getting some thyroid hormone that I make for myself!
Others seem to find that their own production drops so far due to taking thyroid hormone(s) that their own production effectively hits zero. That is why so many need a full replacement dose even if they start off only seeming to require a top up dose.
Generally, once we start on Levo we need to increase dose slowly upwards in 25mcg steps (or sometimes smaller) until on full replacement dose …..that’s typically around 1.6mcg per kilo of your weight per day
Being left on inadequate dose levothyroxine will put strain on adrenals as they try to compensate for lack of thyroid hormones
It then becomes a vicious circle…..adrenal insufficiency means it’s difficult to increase dose levothyroxine, but being on too low a dose exacerbates adrenal insufficiency
What are your most recent thyroid and vitamin results
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
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)
Personally, 25 plus years ago, with adrenal insufficiency, under care of thyroid and adrenal endocrinologist it took 2-3 years to very very slowly increase dose Levo from 75mcg to 125mcg
(1) I increase the levo back to 100mcg or so per day (which I was on initially years ago) to put less strain on the adrenals,
(2) I come off the levo completely (as the endo recommended) which could put more strain on the adrenals whilst my FT4, FT3 and TSH all head in the wrong direction (whether they would stay within reference ranges I don't know),
(3) I stay on the low dose of levo, which has kept my thyroid blood results looking pretty good and kept me feeling human for years, but with continued strain on the adrenals which went kapput last year.
Given that the adrenal insufficiency is the worst aspect of all of this, (1) would seem the more logical approach, rather than the (2) that the endo recommended. (2) only seems to make sense if since the thyroiditis my thyroid has recovered to the extent that it no longer needs medicating (if that's the case, I've probably been on levo for 12 years unnecessarily without a single doctor commenting until now).
The endocrinologist and the endo team, are all pointing the finger at my steroid-based asthma inhaler for causing the adrenal insufficiency. My preference is therefore to wean off the asthma inhaler (temporarily at least) before changing anything else to see whether that makes any difference to the adrenals. If that makes no difference, but subsequently changing the levo up or down does make a difference, that would be an eye opener. The list of causes of tertiary (and possibly secondary - even endo's lump them together) adrenal insufficiency might have to change in that case.
I supplement B12, folic acid and D3. With those supplements and the small dose of levo, my ferritin, folate, B12, D, TSH, FT3 and FT4 are all within reference ranges, although TSH is slightly over 2. Antibodies (thyroid and Addison's) all negligible or zero.
My adrenals can’t cope with even the tiniest thyroid replacement increases - in my case Metavive - unless I take some sort of adrenal support. I get that fizzy feeling too as well as anxious and jittery
Dr Peatfield advised that I take adrenal support for two weeks before introducing Metavive. This I did and all was fine until I got close to optimal blood levels of FT4/3 and then the trouble started. I kept getting the symptoms as described above every time I increased Metavive and would have to reduce it and try again when things settled but it kept happening until I worked out I also needed more adrenal support. So now, about a week before every Metavive increase I raise the Adrenavive and happily, this works for me
In time I will try to very gradually reduce the Adrenavive to test if I can stop altogether or will need to maintain a dose of some amount or other
I only mention this in case something similar is going on for you. It would be a pity to have to put yourself through weeks of possibly feeling awful, if you don’t have to
Many thanks Noelnoel - that's interesting. I don't really want to add anything more into the mix at the moment (adrenal insufficiency is scary - I was lucky to make it through Dec 2023), but it's definitely food for thought. I'll definitely delve into Adrenavive though to get an understanding of what it does - it's presumably not like taking hydrocortisone to replace missing cortisol, and not like adding ACTH (the hormone that tells the adrenals to produce cortisol), so I'd like to find out what it actually does.
it's presumably not like taking hydrocortisone to replace missing cortisol
It’s exactly that but it’s hormone replacement from a bovine source
You’re right, it’s extremely scary but I knew Dr Peatfield was very experienced and also very good at his work. Having said that there was trepidation on my part and it took me a while to take the leap but I’m so glad I did
Due diligence is your task as well as due caution, especially with something as serious as hydrocortisone. It has its place but mustn’t be treated lightly and neither should Adrenavive be
There are two Adrenavive products. One is the whole gland, the other just the cortex, which comes in two strengths. I once bought the whole gland when cortex was out of stock and it was just too much for me. I find the cortex more subtle and gentle
It is heavily recommended in much of the literature on thyroid and adrenals that adrenal insufficiency/addison disease be addressed before hypothyroidism.
I do not have an AI or AD diagnosis, but like many I suspect that my adrenals may have been impacted. Like you, I was and did attempt to come of my asthma inhaler, supported by the fact that I appear to have more episodic asthma these days and symptoms fluctuate both on and off the inhaler.
My asthma consultant did advise me to come off the inhaler slowly. I didn’t. Perhaps that didn’t help my adrenals at all if my adrenals have been impacted.
Also, I then had an awful asthma attack without my steroid inhaler in sight. Big mistake given how difficult it is to get health care from the NHS!
My personal advise based on this experience, trialling coming off the inhaler is worth a go. Decide how long you want to give the trial a go for as it is too easy to get stuck in a rut. Keep an in date steroid inhaler around to resume intake as/if needed, and most importantly, come off it very slowly.
Final thought… it can be easy to treat our health like a live science experiment in the hope of gleaning insights and knowledge. However, chasing after exclusive cause and effect rather than accepting any one thing as a possible contributing factor can be impossible a task.
I have to admit to being slightly sceptical about the inhaler being the cause, even though that's what the endocrinology team think (having previously told me that they've never had such a case before). Since diagnosis I have been moved to a less potent inhaler and then halved the dose of that less potent one prior to my last synacthen test. The cortisol response from my adrenals was even worse than when first diagnosed. I plan to be completely off the asthma inhaler for at least 6 weeks before my next synacthen test. If the cortisol response hasn't improved, I think my scepticism will grow further. Thankfully my asthma has never been bad - I get a bit breathless, also have a partially collapsed lung on one side, but never had a full blown asthma attack. I do carry a reliever inhaler just in case. If the cortisol response doesn't improve after being completely off the inhaler, I imagine that would mean that either my adrenals have been damaged beyond repair (or are slow to kickstart again), or it wasn't the steroid inhaler causing it after all. At that point, adjusting the levothyroxine does to see what happens might make sense, but I don't want to do both at the same time as it will make it impossible to identify where common symptoms are coming from.
If the cortisol response doesn't improve after being completely off the inhaler, I imagine that would mean that either my adrenals have been damaged beyond repair (or are slow to kickstart again), or it wasn't the steroid inhaler causing it after all.
I thinks it’s going to be difficult to know either way. Steroids are such potent things and I think many are more sensitive to their effects especially with long term use. I have a terrible feeling once a gland has become impacted it can’t just return to its original state without intervention and therein lies the problem, but the body can learn to adapt around it which may give some symptom relief.
I can appreciate why you would be reluctant to change your Levothyroxine dose. I hope you work it out and do report back to help any one else experiencing the same.
Whilst on hydrocortisone for the adrenal insufficiency, I tapered off the steroid-based asthma inhaler. I could do that as my asthma is so mild. I still take montelukast and fexofenadine, as my asthma is triggered by environmental allergens. My respiratory consultant is not impressed by this at all, but I figure the adrenal insufficiency is a far greater threat to my life than my very mild asthma, something he really doesn't get his head around.
As well as the hydrocortisone, I also took DHEA as my DHEA level dropped below the reference range when the adrenal insufficiency kicked in. DHEA supplementation is controversial. Some endo's recommend it for all adrenal insufficiency patients, others don't recommend it at all. The science behind DHEA appears pretty clear for females (although there are risks with taking too much), but it is far less clear for males. As a male, I took it, but suspect it is causing some issues (it's very hard to know for sure), so have tapered off DHEA supplementation again, back down to zero today.
Having stopped using the steroid-based asthma inhaler, my cortisol response has improved (more than seven-fold so far). I have (with endo approval) been tapering the hydrocortisone, so far to slightly below physiological dose, to reduce suppression of the HPA axis, and hence to encourage further improvement in my cortisol response. If all goes well, I hope to be off the hydrocortisone and back to an early morning cortisol level of 450nmol/L (which would be a nearly 12 fold increase) within another year. There are still some unknowns, so nothing is certain. As the adrenals recover, I am hoping my DHEA production will also recover (there is supposedly a lag, but there is very little information available about this), so my next blood test will be interesting now that I have stopped supplementing DHEA.
I have found that adrenal insufficiency has made my hypothyroid symptoms worse (or they happened to get worse for another reason whilst I have adrenal insufficiency), and as a result have (with endo approval) increased my very low dose of levothyroxine from 37.5mcg/day to 50mcg/day, then to 75mcg/day, and then to 100mcg/day. I will see what the result of my next blood test is before doing so, but suspect that a further increase to 125mcg/day might be necessary.
If things go to plan and I manage to recover my cortisol production fully, I may then try the Alvesco asthma inhaler to see if that clears the mild asthma, but if I do that I will make sure to monitor my cortisol level in case Alvesco starts to do what Seretide did.
During this "journey", I switched from the NHS endo in whose "care" I didn't feel safe, to a private endo who came highly recommended. They are like chalk and cheese! Whilst still officially on the books of both the NHS endo and the NHS respiratory consultant, I am doing my best to avoid both of them until I am confident that my adrenals have recovered.
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