1) is there anywhere, NHS or NICE or BMJ or BMP guidelines, which states that legally medication cannot be withdrawn without the patient's consent and/or if the patient feels well?
2) Are there and reassuring sources, aside from Dr Toft's statement, any reassuring articles, references or lit which can help me to feel less worried about very low TSH?
I have the quotes to aim at the GP about why TSH should be kept low and see there is a pinned post.
BUT For my own reassurance: I have not read the scare stories but am aware of it all being around, and would like to see anything I can find which will tell me my heart is not at risk, as I read here that there are questions about heart health and low TSH?
(I am less concerned about the fracture issue as have seen the 1,000 patient hour study)
Any info on these very much appreciated, as have to face GP and try to keep current prescription.
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turquoisea7
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If GP says " I have to reduce your dose because the guidelines say i can't let you have a below range TSH" .....
The first paragraph in the NICE (NHS) Thyroid Disease, Assessment and Management guidelines says :
nice.org.uk/guidance/ng145
"Your responsibility
The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian. "
Comprehensive list of references for needing LOW TSH on levothyroxine
In a study evaluating tissue function tests before total thyroidectomy and at 1 year postoperatively when using LT4, it was found that peripheral tissue function tests indicated mild hyperthyroidism at TSH <0.03 mU/L and mild hypothyroidism at TSH 0.3 to 5.0 mU/L; the tissues were closest to euthyroidism at TSH 0.03 to 0.3 mU/L [48]. A normal serum TSH level consequently does not necessarily indicate a euthyroid state at the tissue level.
Interestingly, patients with a serum TSH below the reference range, but not suppressed (0.04–0.4 mU/liter), had no increased risk of cardiovascular disease, dysrhythmias, or fractures. It is unfortunate that we did not have access to serum free T4 concentrations in these patients to ascertain whether they were above or within the laboratory reference range. However, our data indicate that it may be safe for patients to be on a dose of T4 that results in a low serum TSH concentration, as long as it is not suppressed at less than 0.03 mU/liter. Many patients report that they prefer such T4 doses (9, 10). Figure 2 indicates that the best outcomes appear to be associated with having a TSH within the lower end of the reference range.
Good, thank you, I will read and print. So on the basis of these, the hope (for us) is to keep it at 0.03 or above to feel safe? Mine is at 0.04 and trending down so I may have to take less and try to keep it there, if indeed keeping anything anywhere is possible.
see my reply to this post ( 3rd reply down) for list of useful discussions on subject of low TSH / risk / quality of life : healthunlocked.com/thyroidu...
I had low TSH 0.04/5 ish for many yrs , but was reassured by this study : academic.oup.com/jcem/artic... (slow dragon links to it below and it's referred to in many of the posts in the above list) : "patients with a serum TSH below the reference range, but not suppressed (0.04–0.4 mU/liter), had no increased risk of ..... cardiovascular disease, dysrhythmias, or fractures"
Brilliant, thank you, I'll read everything. On a practical level, if mine is at 0.04 and trending down then I do need to look at how to reduce slightly without ending up immobile.
Thank you SlowDragon. I am completely caught in whether to stick on 100mcg, monitor my FT3 like a hawk and risk my TSH going any lower as the weeks go by; and trying to alternate between 100mcg/87.5mcg each day and see if I can stay mobile and functioning, not trigger migraines/throat swelling, and keep TSH from dropping. I don't know what to do, I feel quite lost.
Tackling GP is a separate but of course allied issue as I am going to need a repeat prescrip. This is a nightmare, just as I start to feel well my TSH is dropping lower with every BT. If I didn't know anything about TSH I'd be feeling happy that I'm not so sick, but now I feel I'm probably going to have to reduce.
So (if it were you), you would keep taking 100mcg even though my T4 is climbing and TSH decreasing? I have done my FT3 with MMH, currently it is at 5.4, (3.1-6.8) this leaves room for it to still go up if that's what it's going to do; but my T4 is climbing and TSH dropping over the weeks on the same dose, so I'm concerned that I am just sloshing more and more T4 around, pushing the TSH down. I have odd testing dates due to GP's having tested after 2 weeks on 100mcg, so I have done an MMH test within a few weeks to keep an eye on what's happening to my FT3.
Too soon to make a judgment on dose levothyroxine ….waiting 4-6 months and get all four vitamins optimal
Modern guidelines of starting patients on full replacement dose of levothyroxine….. (1.6mcg levothyroxine per kilogram of weight) …..initially results in very low TSH….until everything settles ….6-9 months minimum.
Many people can’t tolerate starting on such a high dose and have to creep dose slowly upwards
Thank you, Ok just to clarify and make sure I understand this bit - you are saying that my TSH could come up again when this dose settles over time? I have been titrating up (under GP) from 25mcg in May, so this is not a sudden 100mcg dose, it's an increase from 75mcg at the end of August. (I'm not on a bodyweight dose, I'm 74kg)
Me and my very worried husband both say woohoo, thank you thank you. We are both so very grateful to you for explaining all of this. I was about to start trying to take less again and my hubby was going, oh jaysus, you are going to suffer so badly all over again. So, I stick where I am. WOOHOO! thank you thank you thank you. Right I am going to try and stop worrying and have an actual weekend a little bit, and just retest now & then to check my FT3 is staying sensible. (I had kept thinking; surely my FT4 can't just keep increasing if I am staying on the same dose...) THANK you. THANK You. Hoping iron panel will at least show some budge on the ferritin front.
(I had kept thinking; surely my FT4 can't just keep increasing if I am staying on the same dose...)
Yes it can as is controlled somewhat by TBG. These are the thyroid hormone transporters that keep hormones safe and move them to the correct places. TBG is influenced by factors such as oral contraceptives, liver disease, etc , meaning that 'free' hormone can be variable even when we remain on same dose. It is TT4 that can't keep increasing on same dose.
SlowDragons & Tats input has hopefully reassured you that TSH isn't always relevant but where both FT4 & FT3 thyroid hormones lie within range is. Optimising doesn't mean taking levels to the top but finding your own individual sweet spot, which for many on Levothyroxine mono-therapy is roughly 2/3 of the way through range. 'Optimal' refers to having Levo work optimally for you and if you exceed your sweet spot your body can start turning Levothyroxine into inactive metabolites which may have other negative consequence.
Initially finding your sweet spot can take many months because essential cofactors (iron & nutrients) must be optimised first to have Levo efficacy at best. Unfortunately being hypo denies good absorption/utilsation of iron and nutrients until thyroid hormones are working effectively so you have a chicken & egg scenario.
Hence building slowly, ignoring TSH and keeping an eye on both FT4 & FT3 is the way forward, as will also allow other systems (such as those involved with the adrenals) to re-regulate inline with the new ,metabolism increase.
Hope you feel better soon. It can seem a long journey but we've all been there 😊
Hallo, thank you for such a comprehensive and informative reply. But now, please tell me if I am reading you right: what you're saying is the opposite to SlowDragon's response: that my FT4 can/will keep raising on the same dose?
And that this is having negative consequences?
What is TT4, what is it's role, I haven't heard of it? or TBG.
Just when I thought I had some reassurance and was supposed to be sticking on the same dose with the post from SlowDragon ...this whole disease is just soul destroying. So now I have yet another worry?
My FT4 is already over the top of range. I'm only on 100mcg so I don't have a lot of wiggle-room to decrease; and I tried decreasing to 87.5mcg for a week, triggered 2 migraines within days of each other, and ended up so highly symptomatic I was bedbound.
What, practically, in your view, can you suggest I should be doing now on a day-to-day, dose-to-dose basis; sticking where I am or trying to take less every other day and stop the FT4 climbing?
I still feel ill. I am still symptomatic. Any reduction is going to make me feel even worse. But presumably if my FT4 keeps climbing on this dose, my TSH is going to keep reducing, my FT3 will start getting near the top, and now there are other nasty metabolites involved? Please clarify, I am in what feels like a desperate situation. Frankly I feel like giving up.
'SlowDragon, now I don't know what to do. radd is saying my FT4 will keep building on the same dose, nasty metabolites are involved, etc..'
No, I did not say that. Reread my response which explains FT4 is governed to a large extent by TBG. I did not indicate your FT4 will keep raising when you are taking the same dose, only that it is possible.
TBG - proteins that bind & carry thyroid hormone to the correct place.
TT4 - total T4 (bound to TBG & free hormone circulating in blood)
FT4 - free T4 (free available for uptake by receptors and conversion).
You stated above ‘I have done my FT3 with MMH, currently it is at 5.4, (3.1-6.8) this leaves room for it to still go up if that's what it's going to do; but my T4 is climbing and TSH dropping over the weeks on the same dose, so I'm concerned that I am just sloshing more and more T4 around, pushing the TSH down.’
That’s FT3 62% through range. Many peoples sweet spot is not top of range, and there is possibility you do not want this level to go higher. You have referred to your FT4 being over-range in your profile & a previous post. If latest near over-range results of FT4 20.8 (10.5-21) were taken only two weeks after the dose raise to 100mcg Levo, there risks FT4 levels raising higher with time, and FT3 levels raising also.
Over- range/excess of sweet spot FT4 & FT3 levels can have negative consequence as the body’s safety mechanisms turn excess into inactive metabolites that risk impairing the utilisation of remaining ‘free’. Recovery from high levels of RT3 and inactive T2 can take a long while. The lab ranges are there as a guide which should be heeded when first medicating. Are you still suffering fasciculations and jittering?
In your profile you suspect “a cortisol problem due to living undiagnosed for most of adult life”. ‘Anxiety gone through the roof, sleep quality appalling and I actually put on weight. Constant head-rushes/dizziness whenever I stand up’.’ When I push myself to do much I am walking around feeling like I'm drunk but without the high.’
In Dr Peatfield's book ‘My Thyroid and How To Keep It Healthy’ he advocates to support the adrenal glands BEFORE starting thyroid meds. Given Levothyroxine has made you feel so unwell, this may indicate compromised adrenals having troubles keeping up with an increased metabolism. It might be prudent to test cortisol/DHEA levels as adequate adrenal reserve is essential for good thyroid hormone function. Having too high or over-range FT4 will stress adrenals further.
Conventional medicine will use a blood test taken before 9am to test adrenals supposed highest hormonal output, and can be offered at a GP's surgery. Functional medicine commonly uses 4 x saliva samples taken over 24 hours that offers insight into not only the hormone levels but their behaviours regarding your circadian pattern. This allows appropriate support for the adrenals glands to be given, but results are not generally recognised by conventional medicine.
If you read my profile you will see I also suffered years of remaining undiagnosed, adrenal issues, vertigo after initially introducing Levo and felt drunk after any exertion, so I understand some of what you are going through.
If I was you I would lower Levo slightly so alternate 100mcg & 75mcg daily, or drop to 75mcg only at weekends, and test in 6 - 8 weeks including FT3. Post results complete with ranges (numbers in brackets) for members to comment. As iron/nutrients raise and possible adrenal issues are addressed this should improve efficacy and conversion of Levothyroxine which should raise FT3 levels higher.
It is possible to feel under-medicated but be over-medicated and vice versa. Therefore, I would also log all symptoms, and daily temps & pulse which give great indication of over-medication. And make notes on members suggested iron, nutrient and cortisol tests and optimised levels. You have a lot going on and brain fog can become another hypo symptom.
Great advice regarding iron/ nutrients from SlowDragon.
Reading Dr P's book 'My Thyroid and How To keep It Healthy' will offer understanding of thyroid physiology and exactly why adequate iron/nutrients and balanced cortisol levels are so important.
I previously offered my suggestions on controlling Hashimotos inflammation and antibodies, and reading ‘The Root Cause’ book by Isabella Wentz can offer further in-depth understanding of thyroid autoimmune disease.
Right. This is a very long & comprehensive reply, for which I thank you. However the dose-to-dose lived practicality of your advice vs SlowDragon's is that you say, reduce, where she says stick.
Cortisol/Adrenals: I sent of a Regenerus test saliva test last week, am awaiting results. Like most thyroid patients I suspect, I didn't know anything about cortisol or adrenals when I was diagnosed; I was simply given 25mcg and told I would feel better. I felt worse, and even now I can't say I feel well by any means, just less ill.
It's only stumbling across the forum and reading everything I can which has given me any sense of any of the cortisol/adrenal issue. GP's did a 9am cortisol test which nobody commented on, I had to try & research what a 'normal' result would be myself, and at 529, it seemed normal. Will have to see what Regenerus says.
My belief at this moment is that it may well have been more beneficial in my case to raise from 75mcg to 87.5mcg; at the time it didn't even occur to me that this was an option, GP just said, you are so symptomatic (& my heart rate was dropping below 60bpm), start taking 100mcg when the next blood results come in - and I was very glad to do it in the hope I'd feel better.
So your advice to drop to 100mcg/75mcg alternate days, would level out at 87.5mg per day, which is what I did for a week and felt probably as ill then as I did on about 50mcg. Which is why my thought was, 100/87.5mcg, which would level out at 94mcg, to try and slow the climbing numbers but keep myself feeling reasonable.
Yes I realise my FT3 is 62% through range. I realise that for many people this might be ideal - I have no way of knowing what my ideal is. This is up from 43% through range on 17th August, so 7 weeks prior. My concern is that if I stick to the dose where I am and just keep going, it's going to go too high. I believe, from my own tiny experience and reading here, that it is easier to add levo than take away. I also don't want to even start feeling palpitations, any more anxiety, etc; I had appalling palpitations for weeks on starting levo and they scare me. My question about 'tinkering' with my dose is therefore based on caution.
Feeling drunk/lightheaded: This has definitely decreased in the last week. When I dropped to 87.5mcg daily my head felt like it was in a concrete helmet the whole time, I could barely move my neck and at the end of the week, even move my eyes, without my head reacting, feeling dizzy & sick.
Pins & needles/fasciculations: yes. Still. Pretty much constant. This has been the case 24/7 since I started on levo and is driving me at times quite insane. I am regularly just out of resilience to bear it, I am frequently at my wit's end and just sit and sob. I have kept waiting, waiting for it to resolve. Seems to fit with small fibre auto-immune neuropathy, which in the case specifically of hypothyroid is said to largely resolve when levels are restored, but primarily on T3 replacement rather than T4. This was partly why I started splitting my dose; if I take 100mcg in the morning, I have two hours of life, then feel appalling for the other 22. If I split 75 am/25 pm - currently I take the 25mcg around 4.30pm, that makes evening/night less horrific; but only less, not completely. Am contemplating trying 50/50). I have tried everything else recommended for this problem except B12 injections.
I know, it’s tricky isn’t it but receiving conflicting replies commonly happens because there are no concrete right/wrong answers, and is a part of the forum that gives opportunity for further discussion or input from other members. You can follow one person but better to be open minded to receive information from multiple sources from which we can never stop learning.
Every one’s journey is different and members are here only to offer own experience or recognised credible information hopefully evidenced with research papers, but I think everyone agrees that thyroid hormone takes many months to reach fullest efficacy and any initial felt effects may not be indicative of the whole picture until you have waited it out whilst improving co-factors.
I picked up on your symptoms because were similar to my own after starting Levothyroxine with insufficient adrenal reserve, low nutrients and iron difficulties, although in my case it was iron over-load. My replies are always long & comprehensive because I share everything I have learnt that helped me and in this case if I could relive my journey I would have kept thyroid hormone levels much lower until other issues were addressed, as believe the basic premise of thyroid hormone replacement meds are to make us feel better and should never need to be endured.
The forum is exceptionally well moderated and members are very supportive of one another. No one is medically trained and we are responsible for ourselves, whilst we take information we consider is best suited. I am sorry you feel so confused and ignorant of your condition but we have all been there but I really don’t think I can suggest anything further regarding your dose but you could put another post up to attract further opinions 😊.
Thanks. Yes reading your biog there are correspondences between our symptoms. I do feel confused and ignorant of my condition in spite of putting in so much work. At this point, I'm doing my very, very best in every single way I can and it is taking up almost my entire waking life, if not just being ill, then trying to find out how to feel less ill. I am completely open to learning, hence asking so many questions. (btw yes I have read Wentz and done everything I can diet-wise do be doing the right thing. With my very limited learning so far I seem to know slightly more than either a) the GP who thought I should be fine on 25mcg for life and as I wasn't, told me I was abnormal and probably had cancer, and b) the GP who thought I should be getting up to 200mcg as fast as I can, and then more like 300mcg privately, and was testing me monthly. This is the 'help' and 'care' I have had through the NHS so far, hence relying so heavily on the forum. Initially I found the second GP's approach a huge relief in contrast to the first, but clearly it was a case of going from one extreme to the other. I suspect had I been left for the 6-8 weeks on 75mcg I wouldn't be in the dilemma I'm in now and may still be converting much more T4, but who knows, done is done and I don't know enough to understand if there is any way back to raising conversion levels given that I'm already doing everything I can on that score. The point is I'm in a difficult situation, finding it all a huge strain mentally and I am struggling.
Of my two major anxieties at this point, a) risking overmedication, and b) keeping GP happy and supply going, my overriding anxiety is about dealing with yet another different GP and having no clue which way that's going to go. I am preparing for the worst based on everything I read here about GP's and low TSH - and of course my anxiety is how to keep hold of my prescription rather than be forced back down to 75mcg, which would floor me. If I could source my own brand of T4 and just work all this out myself without having the fear of big brother hanging over me, I'd be doing that right now, and the anxiety would be far less. However, I take Mercury and it seems to be very difficult to source. My only option there is to change brands, and then have no clue at all which of my responses/side effects are due to brand change and which are due to dose. So I feel doubly stuck.
Thanks very much for your reply. If I could work out how to 'tag' people I would add your name to any future posts.
You put a @ in front of the persons name whom you are wishing to tag & as you type their name a drop down list will appear of similar names. Ensure to click on the right name, ie turquoisea7
thank you for this, I'll do that. @radd could you share any more information about 'getting the adrenals right', what that involves, or am I at this point just waiting for the Regenerus result before I can have any sense of what action to take?
I am also just reading your post on restless leg syndrome, a year ago. So my legs can do that at times, when the 'jittering/rattling', what I'm reading others describing as spiders crawling, gets worse. It sounds like the same problem, someone else is saying it's elsewhere on their body too.
Is this new thinking because I can't find anything to support this? Have you more explanation/evidence please SD?
Inadequate iron levels are both a cause and consequence of hypothyroidism, with both scenarios driving thyroid hormones down and TSH up. Hence hypothyrodism.
Your links refer to different groups experiencing iron deficiency/low ferritin levels, low thyroid hormone levels coupled with low TSH who are not medicating.
You can not compare apples with pears. O/P states in her profile pre- diagnosis TSH was raised and as we would expect has reduced after introduction of Levothyroxine, evidenced by O/P stating ‘TSH has hit the bottom, T4 gone off the top’.
I would say similar to many (most?) members, this O/P's TSH is unlikely to raise if enough Levothyroxine is to be medicated that alleviate symptoms long term.
So what, then, is the long term answer in practical terms? Replace some T4 with T3, which as I understand it would decrease TSH still further but then address the excess T4 problem? If a working FT3 level is the holy grail by which one is seeking to establish wellness, is it then 'better' for your body to get there using T3 or a combination? it certainly doesn't seem that for me T4 is making me well.
SlowDragon, now I don't know what to do. radd is saying my FT4 will keep building on the same dose, nasty metabolites are involved, etc.. Presumably that means TSH will keep going down and FT3 up. I have no idea what to take from one dose to the next. I'm scared. I feel completely lost. I don't know what to do.
Those results were on 13th September, done by GP after 2 weeks on 100mcg levo. tests done per protocol, no bitoin, levo 24hrs prior, same brand etc.
I believe you are right; given my symptoms and the last 5 weeks I think I'm panicking based on the results. I do think the 100mcg is still building and I should sit it out and retest later. Please suggest, in your view, how long I should wait before retesting?
Yes iron panel and Vit D I have done and am waiting for medichecks results.
Folate & B12 done 17th August, I posted then as GP said abnormal, but obviously I have been supplementing. GreyGoose said, levels OK for someone supplementing.
Serum Folate 22.19 range >5.38;
B12 1363ng/l range 211-911
Because of the last TSH and FT4 result; I posted at the time asking, is this result due to testing too soon, or am I heading into trouble? SeasideSusie responded saying, her feeling was testing too soon, but we agreed that to be on the safe side, I would try reducing to 87.5mcg per day and retest after 6 weeks.
After a week I was immobile. Hugely symptomatic, 2 migraines in a week (never had one in my life), muscle & joint pain, couldn't sleep for massive fasciculations 24/7, completely constipated, cold, often shivering & couldn't regulate body temp.
Had no choice but to go back to 100mcg. Have just got to the point where I am moving around again, able to walk dog 2 days out of 3, gradually improving, but it is highly sporadic.
I was concerned, following the test result with no FT3 that I my FT4 is climbing and wanted to test FT3 to check it's OK. Did MMH test Tuesday this week (6th October) and no, I HAD had taken levo within 16 hours as had taken my 25mcg split dose at 4pm the day before. (realised I shouldn't just before taking dose but felt so ill I took it anyway). So I accept that my FT4 is likely falsely slightly high. Even allowing for this, it still looks like FT4 is increasing, TSH is still dropping, although the MMH ranges are also different than my NHS result ranges and I don't have the mathematical brain to work out what the difference is between the two sets of results and ranges.
6th October results (MonitorMyHealth): ranges are different
TSH 0.04 (0.27-4.2)
FT4 24.3 (12-22)
FT3 5.4 (3.1-6.8) this is up on GP's test 17th August: FT3 4.9 (3.5-6.5)
In light of my symptoms, I have no grasp of how I can be at risk of overmedication. But I don't grasp the blood-body time-lag; in 2 weeks could I wake up suddenly overmedicated if FT3 keeps climbing? Is it therefore not just responsible to keep checking FT3?
I think you are right, just sit it out and test again later. It looks like the 100mcg is still building as it is not yet 6 weeks, including the week where I took 87.5mcg. Obviously these results have scared me, the GP knows only their test results, and on those I'm going to now have a problem getting my repeat prescription, which I have to try and do next week.
I feel caught in the classic trap of wanting to under-medicate even though I still feel ill, to keep the GP happy and keep my supply of Levo.
So in your view how long should I sit it out until retest?
just a general observation re, your comment about feeling worse/ headaches for the week after reducing dose and having to increase back :
in my experience when altering dose of levo ,i now don't form any conclusions during the first 5 weeks about how that dose will feel once it's settled... i accept that all sorts of things may feel different (for better or worse) during that time .
Once you've made a decision on dose , stick it out till 6 weeks , because the first week or so of any change (even if it's the 'right' one) may well give you headaches, constipation, or anything else , but that doesn't mean it's not the 'right' dose .. it just means your body has noticed the change in level and it making some adjustments of it's own. These may settle down and gradually lead to an improvement overall ... or they may continue and lead you to decide that the dose change was not the right move.... but don't decide too soon . if you made a decision to increase or decease slightly , stick with it for at least 6 weeks .
I've had 3 dose changes in fairly close succession, and so i could compare my reaction to each.. and each time the first 5 weeks were a bit 'all over the place' symptom wise.. on 2 occasions after about week 5 ,things slowly improved and settled... but if i'd been asked whether it was right move during those first few weeks, i would have been adamant it was a mistake , and would have gone back to previous dose , but i'm glad i did stick it out .. on two occasions after 5/6 weeks things slowly improved and a month or so later it was evident i did actually feel better overall than i had on previous dose , odd aches and pains gone and was sleeping better etc . ( on the other occasion, things didn't improve after 5 weeks and got worse .. so on that occasion it was evident that that dose change really was a mistake )
But i honestly think it's one of the biggest mistakes many people on here make, ie. judging a new dose based on unfavourable symptoms during the first few weeks . i think if we make a change to dose , we need to allow our body to adjust itself in response to that change, before judging if it's going to be an improvement or not.
Thank you very much for this. I agree with you and understand the thinking behind it. Frankly had the GP's not tested me after 2 weeks on 100mcg, I'd have just stayed on it and kept going because for the first time, I felt so much better. Today, I feel less ill than I felt yesterday. I am also aware though that these feelings could be related to what I took a week or more ago; and that in a week's time, the picture may not be so good. I am going to try risking taking less because I feel I have to. My problem with going down to 87.5mcg was that I literally couldn't move my head by the end of the week. Is that normal? When people talk about going down, they say they feel worse, not that they literally become immobile. My symptoms felt pretty extreme (at this point I feel I've been really brave to keep going on Levo with the promise of one day feeling less ill at all, and not just going to visit the nearest railway bridge). It wasn't just a case of headaches; I have headaches on and off all the time since starting levo and tolerate them. It was a couple of fairly extreme migraines which I've never had before in my life, within days of each other. They left me unable to open my eyes or stand on my own to fetch a drink or go to the loo for about 24 hours, sick, shivering for hours - it was a bit of a big reaction, and beyond the 'feeling worse' which I expected. The fasciculations rocketed to an unbearable level and there is literally no relief from them, nothing helps or makes any difference; when they escalate and are all over my body, I just want to smack my head on the wall, it is the most miserable existence. The tinnitus increases to a deafening level; I'm literally left rattling all over in a horrible noise with no relief at all. In those moments I feel like I should just be put out of my misery. I'm prepared to risk all that again, I don't know what choice I have, but of course I completely dread it.
I should say; I'm not a wimp. I've worked outside and with horses all my life. I'm strong (or was), I am used to enduring all kinds of weather, pain, miseries and just carrying on. I carried on unaided after being diagnosed with fibromyalgia, which was clearly undiagnosed hypo in my case - on a ferritin level of 4, with no follow up or support at all, for 5 years. I am seriously used to just putting up and getting on. I've been told off by the GP I was seeing for even trying to carry on living my normal life while getting levo 'sorted'; I've done it because I can't just stop my life on the promise of a one-day; and I can't see many hypo patients who say, trala, happy ending, I feel well! So with the best will, I really am very confused about how to reduce without ending up in that kind of mess again.
yes . i do also include extreme symptoms in my 'make a note, but otherwise ignore it for the first few weeks' philosophy....
if you are trying to measure the level of water in a jug, and you knock it ~ even a small nudge ~ you can't get a reliable reading until the water's totally settled again... quite extreme reactions to even small dose adjustments don't surprise me ... i expect them ... my body is going "Eh ? ... What the **** just happened ? "...so why wouldn't it give off some pretty extreme reactions for a week or so while it figures things out and tries to adjust it's other settings again.
in a healthy person , minor adjustments to optimise thyroid hormone are done frequently and automatically , and all their other systems eg adrenals etc are in good working order so they also can respond effectively without you noticing ... but in someone who is having to adjust their thyroid hormone 'manually' and settle for the best 'average' dose , who quite possibly has other regulating systems that are not operating optimally anymore .. then even 'extreme' reactions are to be expected sometimes i think , and don't necessarily mean anything is really 'wrong'
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