My T4 has shot up and having hyper symptoms. Feeling dreadful tbh. I was on 150mcg 4 weeks ago and reduced to 125 each day under docs advice-and still feeling horrid hyper symptoms. Could I reduce to 100mcg each day now, or is it best to do alternates 125/100 for how many weeks. I don’t want to plunge to very under but I simply can’t stand this feeling anymore and feel like each day I’m just shoveling more toxins in when my body isn’t coping.
I’m awaiting Endo referral. Will post my latest bloods and ranges tomorrow when they come through just wondered if anyone has had experience of this and any thoughts? I’ve also read NICE guidelines re stopping Levo for few days??
Hello there, I have graves disease and am currently on levothyroxineand carbimazole.After being steady on 100mcglevothyroxine per day I recently ended up in A and E with weekly migraines and a heart rate of 106.It turns out I was slightly overmedicated and my endo cut my thyroxine in half.That's what he does.I have slowly worked my way back up after my dose then ended up being too low.I am currently taking 100mcg in the week and 50mcg at weekends.At the moment I feel over medicated slightly.Feel shaky, going to the toilet numerous times a day and occasional high heart rate.I am now on proprananol to preventmigrainesand lower my heart rate a bit.I'm due another blood test in Feb but I think I'll do a private one for T4 T3 and TSH as soon as I've been on this dose for long enough.I can only think that my graves disease is flaring up and breaking through my carbimazole so that, plus my Levo is pushing me over.My thyroid eye has also flared up again.My endo seemed flumoxed as to why this had happened after being steady for a time and has said he will need to check me more regularly.I am on the waiting list for ENT to discuss athyroidectomy.Hope this helps in any way.Thyriod is a very personal thing isn't it.What's right for me may not be right for you.
I’m sorry you too are having a swing/ period of instability. It’s a tough ride this thyroid business isn’t it? The shakiness is just awful (I also had a horrid electricity rushing prickling sensation in limbs. Nausea etc. And also sore eyes, blurred vision etc) so sympathise with the body being out of whack. Actually you can feel completely wretched. I need to read more about Graves as the idea of taking Levo and medication to reduce confuses me 🤔 like it’s a contradiction. I need to understand the science a bit. Will you have a long wait for the thyroidectomy? How are you feeling about it?
I’ve only just been reading about Graves (as was wondering if I’d been misdiagnosed?? ) and have now been recalling the hyper symptoms previously when having a ‘flair’. But I’m assuming Hashimoto’s and have always been underactive- not gone over range in 2 years since diagnosis until now!! I could have had this many times though pre blood tests and Levo and blamed it all on menopause.
And your words are reassuring. Not that I wish fit anyone to be battling this thing as I wouldn’t wish this on anyone but to know you are not alone is huge. I’m coming to terms with no quick fix, in for the long game and individual health plan. It’s so unique. Like you say, I have a friend who pops the Levo and bingo no issues. Bit tired on occasion but?? Or likely she’s incredibly stoic. I seem to implode when mine is thrown off 🤷🏼♀️
I had no idea it was so complex.
Thank you so much I appreciate your feedback and support x
Hello Butterfly, I was diagnosed with graves by my high T4 levels(57) and also specific antibodies which relate to graves.The antibodies which relate to hashis are different but I'm no expert on that.I was only on the one drug Carbimazole at first and the idea is to take just enough to balance the thyroid and let just the right amount of t4 through.I tried this for a year but I think my endos lack of understanding about the delicate balance required and the impossibilityat the time to get appointments close enough together meant I was swinging between being either over or undermedicated.My opthamologist said block and replace would provide more stability so I started on that but although that has been a bit better( the carbimazole blocks my thyroid and the levothyroxine replaces it with a steady and correct amount in theory) I seem to be still having problems 3 years down the line.You certainly do need to have patience and in some cases a bottomless purse which I don't have. I am still waiting to see ENT.I was referred in June this year and at the moment they are offering people referred in May appointments.Hopefully it won'tbe too much longer till I hear but of course that is only to see the consultant in the first instance and then I'll have to wait for the operation.Who knows how long with this covid business.I am nervous as there don't seem to be many happy endings on here.I hope I'm one of the lucky ones.My daughter gets married next December and I was hoping to feel and look better by then (the thought of future generation's looking at the photos and wondering what'swrong with grannys eyes is a worry).I can live in hope I suppose.I also get that funny whooshing feeling through my body.Don't really know what that is either.A really weird feeling.I too left it about 2 years before going to the GP thinking it was the menopause and I didn't want HRT because of migraine.I was shaking, sweating, losing weight and my eyes looked terrible, couldn't sleep etc but was nodding off on the settee.Never thought the thyroid had such an effect on the whole body.Hopefully it won't be too long before we come out the other end.Sending best wishes.
Oh Cava what a journey! Thank you I just didn’t ‘get’ the block and replace thing. Totally confused. It’s unbelievable the impact it has on your whole system like everything. I used to Google hypo symptoms (on first flair and seriously ill off work) and think tired, constipation, dry skin blah blah and think are you kidding me? Like work colleagues might think wow what a wimp. Whilst the actual reality was my being incapacitated. Like you, I read in here and often think yikes feeling slightly terrified. I’d pinned hopes on having the bxxxxx taken out and just medicate. But I believe it does work for many- likely if you are feeling well, you just get in with life. I’ve done that myself on here- disappeared for a couple of years till my current flair then screaming for help from this fabulous community.
Cheers to that re recovery/ remission and looking just as you want in those wedding pics xx
If you have been diagnosed hypothyroid you can't become " hyper " in the true sense of the word.
Is this a Hash's flair ?
I read that some people dealing with this auto immune thyroid disease drop the dose of their T4 for a few days so to try and reduce the intensity of the " swing " as the likely hood is that after the AI attack your thyroid will be further incapacitated and if anything, you own thyroid hormone production further compromised.
Dr Izabella Wentz writes on Hashimoto's and maybe of help in understanding this AI disease and the implications of how food and life style choices may need to be considered in order to try and reduce/delay further damage to your thyroid gland.
Thank you so much for this. I will have a look at this info. Been at the end of my tether so hoping it starts coming down soon. I’m also wary that a reduction might then lead to going very underactive. It is Hashi and I have been diagnosed so think yes it’s a flair 🥺 thanks for help with this x
Well yes, but this phase of " hyper " type symptoms is hopefully short lived, and the reality is as your thyroid becomes more damaged with every attack you will likely need a dose increase in T4 and when your thyroid eventually completely fails, you will likely need more than just T4 to restore your health and well being.
But good news is that the attacks cease and the Hashimoto's Disease dies with the gland.
Thank you Pennie honestly I am secretly hoping it does destroy eventually largely because the rollercoaster is too much of a ride. But I realise even if people have a thyroidectomy it’s not plain sailing as dosages seem to need constant tweaks. Grrr 😡 we have it hard. I had no idea but I’d be very glad to see Hashi go. Looking back, I realise I had hypo for many years prior to diagnosis and genuinely don’t think I remember feeling at optimum health for at least 10 years. What a disease this is x
Well , I can only sympathise as I have Graves Disease and had RAI thyroid ablation in 2005 and now manage lingering Graves, thyroid eye disease - caused by the RAI - and hypothyroidism.
I became extremely unwell around 8 years later and then refused any other thyroid hormone replacement option to T4 so now I self medicate and look after myself and am much improved.
You’ve had a tough time. Do you have T3? My gut feeling is that I’ve never been quite right on Levo. I’m sure it’s feeling toxic to me. Just a gut feeling but something has been off since I started. So even when more ‘stable’ my eyes don’t feel right. Sort of fuzzy, heavy feeling. Quite odd. I’m to see a thyroid specialist Endo and whilst I know it’s not easy to get or suits everyone, think I’m at point of wanting a trial of T3. I know my T4 is over range but my T3 is low. What are you self medicating on? I’m so pleased you much improved 🙌
I am now taking Natural Desiccated Thyroid the original thyroid hormone replacement used successfully for over 100 years to treat hypothyroidism long before Big Pharma, guidelines, blood tests and ranges.
NDT is made from pig thyroid dried and ground down into tablets referred to as grains and contains all the same known hormones as that of the human gland namely trace elements of T1. T2 and calcitonin plus a measure of T3 and a measure of T4 in each grain.
I did trial some T3 - Liothyronine with my T4 - Levothyroxine but felt a bit turbo charged which quite likely meant I hadn't found the right ratio of T3 and T4 for me.
I'd also purchased NDT and decided to try this option and it felt easier to manage and much softer on my body so that's been my treatment option for the past 4 years.
I now just take a yearly blood test more to see where my vitamins and minerals sit than anything else as I still need to supplement these and I've been on the same dose of NDT for these past 4 years.
On T4 levothyroxine only the accepted conversion ratio is 1 / 3.50 - 4.50 with most people feeling at their best when they come in at around 4 or under.
So to find your conversion ratio you simply divide your T3 into your T4 - maybe check yours out to see where you sit :
A faster metabolism and very good conversion would be coming in under the range whereas a slower metabolism and struggling to convert the T4 into T3 would be outside the top of the range.
It's just a gauge as everybody's ideal metabolism is unique to them but a tool to consider, and interesting enough the ratio of T3 to T4 in NDT is at around 1/4 :
Thyroid UK hold a list of recommended endos and specialists who are supportive of alternatives to T4 monotherapy and unfortunately it seems to be a financial post code lottery to get T3 or NDT on the NHS, though 20 odd years ago all these options were available through your doctor in primary care.
There are also specialist clinics around the country for people who may be suffering thyroid eye disease and you might like to contact The Thyroid Eye Disease Charitable Trust tedct.org.uk o find your nearest specialist centre as this again, is a specialised area and I read some centres have an endo on site so to optimise thyroid levels so not compound further eye issues
Thank you for this detailed response. I’ve copied the Endo list from thyroid uk and was thinking about different options. The NDT pathway also interests me and honesty I’m paying out so much money on private appointments bloods Endos etc I’d sacrifice many things to get this sorted and pay for private prescriptions. Do you have to source a private prescription for the NDT?? I noticed the doctors listed (one is entirely on line via phone etc as I’m in Manchester, there don’t appear to be too many to choose from here) will prescribe NDT. I’m glad you have found a prep that works and I’ll use the calculator. I have no doubt I’m a poor converter but want to check most recent bloods.
I’m also slightly worried about being too keyed as the feeling of over medication is just an unbearable one for me. I just don’t seem to ‘handle’ it.
Thank you also re the eyes- I think there’s a clear connection as this was never an issue prior to a flair two years ago. It has to be linked.
I'm stuck down in Cornwall and there seems very little, if anything that doesn't necessitate travelling outside the county and i was too ill to do this, and not able to afford the whole business surrounding getting to see someone who may or may not consider offering me help.
Fighting the NHS for T3 was bad enough and the stress of it all simple exacerbated my symptoms so I needed to take myself in hand and DI for myself, which has in fact been liberating.
There are pharmacies listed on the Thyroid UK website who do supply NDT / T3 but you need a private prescription and my doctor didn't want to help with either this or T3 :
I self source my NDT through the internet - as do many people on here :
I've just looked back and the last T3 nd T4 reading wasn't looking good but read that you were getting over illness and advised to rest up ??
Conversion is compromised when unwell, as the body needs the T3 first to fight infection so it gets redirected and your body remains tired as you need to rest and recuperate
I hope you are feeling better but sorry you've now been hit with your immune system response taking centre stage and attacking your thyroid.
Be kind to yourself, I know, easier said than done, but you're obviously a bot low so everything hurts more and is harder to manage.
Thanks Penny I was wondering about how to access and I’m with you re seeing an Endo who then won’t support. I was there 2 years ago and nearly a thousand pounds down with fees and costs. Could have kicked myself and was very naive then about the whole landscape assuming a specialist would be prepared to do what it took to get you well. 🙄 Thanks for your good wishes and yes I think defo post viral fatigue and still recuperating. I’m trying to be kind to myself as I’ve realised if you haven’t got health, you haven’t got anything. Thank you for being there. I’ll update once I’ve seen the Thyroid Endo but will be reading re NDT. I have a feeling that I need to kick the Levo and there has to be another way. As you say, prescribed before the advent of pharma companies etc and a market driven attitude to prescribing drugs. Like withdrawing T3.
Can I recommend a book whilst, I hope, you are recuperating ?
Your Thyroid and How To keep It Healthy is written by a doctor who wrote it for patients so to educate and enable themselves.
Barry Durrant - Peatfield writes in an easy to understand, insightful way and one of my two go to books - the other being written by Elaine Moore and all about Graves Disease which is a challenge to read - but hey ho - I'm dyslexic anyway.
I think both books are now available through Thyroid UK though other options are probably with availability.
Thank you Penny I’ll get these and have a read. I’m realising that the more I educate myself it can give me a little sense of being in control of something that feels completely out of my control at times. I truly appreciate your help and support thank you 🙏
Hi Butterfly1942, I'm going through a Hashi's flare now too, we met on my post about it. I was fairly 'out of my mind' while going through the worst of the flair and I honestly couldn't confirm what was going on with me until I got my blood tests, which showed a spike in FT3 and FT4 after no dosage change of my thyroid meds. So after getting some advice here, I decided to lower my dosage for a while. I took about 65% of my regular dose last week, and I felt much better. I attempted to go back on my regular dose this week, but I can feel it is just too much still, as I'm still with a number of hyper symptoms. I'm just going week by week now, and I think I 'll only end up taking about 75% of my dose this week. Like you, I am afraid of going hypo-, so I'm trying not to lower too much.
I noticed that when I went down on my NDT dose while experiencing a flair, I felt better right away, which should be a good indication that you are overmedicated. (However, this is probably easier when taking NDT or T3 than on levo, because T3 has a shorter 1/2 life.) Also, you said maybe you were over range in T4 and low in range in T3. Maybe you're a poor converter and need something other than levo to make you feel better. I hope your new lab results give you more insights and can help you get back to health!
Hi Xheila Thank you yes we met on your thread! How are you managing? I’ve had a rollercoaster week. It was interesting hearing from Penny (I’ve ordered the book) and the NDT. Spent the eve googling and it caught my eye re the 3-4 day for it to leave the system opposed to the 3 weeks or so for Levo. So it’s really interesting that you have said you can adjust a bit more quickly whereas I’m feeling it’s going to take weeks to feel the impact of my reduction. I’ve bitten bullet and dropped to 100mcg today but still anxious about a plummet. Weight wise I’m 60kg (or less now due to weight loss) so know 100mcg still slightly above the recommended 1.6 per Kg on NICE guidelines.
I’m still awaiting bloods as my doc left voicemail so likely be next week. My bet is T4 still high or over range and am betting my T3 low. I’m sure I’m a poor converter.
I think if I could reduce like you and have a quicker response I’d feel a bit more in control and not at the mercy of the long wait with levo.
I’m glad you are feeling some benefit of the reduction 🙌 here’s hoping we got off the flair rollercoaster as soon as possible. I’m exhausted, don’t know about you! And by the way, ‘out of your mind’ I completely relate to that. I had a week or so where I thought I was literally going out of my mind, on the edge of a nervous breakdown or having an out of body ‘episode’. I’ve never been so scared. I think I was actually relieved to see my over range bloods ( whilst not high compared to some others high for me). Let’s hope we get to the end of this flair madness ASAP.
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