So, I have been recovering from a “crash” since September last year. I do mostly feel about 90% back to the normal me but then sometimes I seem to slip back again.
So for the last three weeks (following a dose increase, may or may not be relevant) I’ve been feeling fab. Lots of energy and NO symptoms, all good. But then I seem to slip back and for the last four days or so I’ve felt tired, real muscle weakness which worries me, the weird headaches, tinnitus and strange things like it feeling like I’ve got blinkers on, like my eyes aren’t quite right that I had very early on in my illness. All these symptoms come back and they worry me.
Over the last 13 years or so that I’ve been diagnosed hypo, I’ve always felt fine. Even if I haven’t been perfectly medicated, I’ve never noticed until my annual bloods came back. Now, I seem to lurch from being fine to having all these symptoms every few weeks.
My question to those who have been feeling unwell for longer is - is this it? Do I just have to tell myself these symptoms I’m feeling are fine and it’s nothing serious and I just have to live with it? I’m fed up worrying and panicking every few weeks that there’s something serious the gp might have missed.
When I’m well I feel like I’m nearly there, there’s just a couple of issues I need to address (ie, monthly pain and maybe endometriosis, and getting my ferritin level up) but otherwise I feel almost back to my old self and I don’t worry. Then I have all these symptoms again and well.....
Any advice?
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Murphysmum
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Really? Don’t be me wrong, I’m happy if that cures me but over the last couple of years I will have gone from 125mcg to potentially 200mcg or more? (I’m on 175 just now).
Thinking as I’m typing (!), could it be then that a very stressful time has meant that my thyroid has packed in totally now, and therefore that is what caused my ‘crash’ and then all these symptoms that I’ve never had previously? (When I was diagnosed I only had weight gain and a swollen neck/throat)
Well, it's not static. The gland gradually deteriorates, meaning that you need more and more. And, it's perfectly normal to have an increase, feel well for a while, and then the symptoms come creeping back. That just means that you need another increase. One of the main problems is that doctors are so reluctant to give us enough hormone to make us well - very often because they dose by the TSH. In fact, most of the time, they don't really care if we feel well or not! And they very rarely take conversion into consideration. It could be that your conversion has got worse.
I’m under the care of Dr Toft now so hoping st least I have someone sensible reviewing my case! (Although mixed reports on here!)
I’m due bloods in another 3 weeks so we’ll see then. My previous medichecks results were posted on here and some seemed to think I wasn’t converting well at that point. Dr Toft didn’t seem to think that was the case though 🤔 and I’m hoping that all my other vits and mins might be better by now so the next ones may give a better picture.
I’m heartened to think I might just need another raise though - it gives me hope!!
I'm not sure I would trust Dr Toft, but I suppose he deserves the benefit of the doubt. Although, if he couldn't see from those labs that you have a conversion problem, then he has a problem!
Don't be too disappointed if improving your nutrients doesn't improve your conversion. There can be so many reasons why we don't convert well. One of them being just because we have Hashi's. Lot's of Hashi's people have poor conversion, and there's nothing we can do about it.
Agree GG. When we need an increase and it's forthcoming we feel good because it is higher than what we have had before but if it isn't enough then part way through the six weeks it takes to get fully into our system it appears to have run out of steam so feel start to feel depleted again so after the six weeks we should get a retest and act accordingly until we are in the correct dose for us.
Did your doctor test both Free T4 and Free T3 as these have to be nearer the top of the ranges but rarely tested.
Symptoms usually mean an increase is needed but some may people may not get to an optimum.
Do you have your blood tests at the very earliest, fasting (you can drink water) and allow a gap of 24 hours between last dose and test and take afterwards.
The aim is a TSH of 1 or lower with FT4 and FT3 in the upper part of the ranges.
Some doctors think that a TSH within the range is fine when it isn't.
Thanks for response shaws , the last time I had full thyroid bloods done was in May when I got a medichecks check. I’ll try to add my results above.
At the time, I was feeling ok I recall but started to feel the symptoms again a few weeks after this test was done. Feedback on here at the time was that I looked to have poorish conversion and I should reduce my dose a bit. I reduced from 175 to 150mcg.
I stayed on this until I saw Dr Toft 4 weeks ago and he told me to increase again. I did have NHS bloods done a week before I saw him where I specifically asked them to do T3 but they didn’t , my TSH was 0.44 (0.2-4.5mU/l) and FT3 was 15 (9-21pmol/l).
Is it possible I really need another dose increase if I’m now taking more levo? Or do we think I need to push for trying T3? Dr T seemed like I was a very simple fix... sort of “let’s increase your dose, and try to lose some weight, and you’ll be fine..” sort of chat. For the record, I wasn’t objecting the the weight thing as I totally agree!!
Research has shown that those not benefitting from levo that a T4/T3 combination can help. The problem is that if you are getting an NHS prescription doctors have been told not to prescribe because the cost is prohibitive. I have no idea why it has shot up in price so much and it is a disgrace. Your FT3 is too low for you to feel any benefit, I feel, and I am not medically qualified but am now on T3 only myself but have to source my own and it has been difficult this year..
I know it’s a topic for pm discussions but do you always need a px, and do you have to get it from abroad either way?
Murphysmum, I'm experiencing the very same thing. Mine has been going on for almost a year and I am desperate to find an answer. I've been through several doctors who all have done dose increases. My symptoms which are identical to yours weak muscles, weird head pressure, fatigue aches, which have routinely come and go over the last year maybe lasting anywhere from 3 days to a week, started to get more severe and last longer. I mean I feel so bad some days I can barely make it through work thank goodness I have an office job. There's no way I could do a physical job. I felt this way almost the entire month of August so it has progressed in 2 more severe symptoms that last longer. Yes a nightmare! I have seen five doctors in the last year each one wanting to give me additional thyroid medication except the last Doctor Who is integrative and totally thinks outside the box. When I saw her at the end of August at my wit's end she ran more blood work than anyone else ever has testing everything under the sun. Most everything was in range but she wanted to increase my D3 as well as B12 an interestingly she decreased my T3 slightly. And lo and behold like a miracle Within 3 days the horrible feeling lifted and I felt normal. It was like a miracle! So I go for 2 weeks feeling almost normal and last Saturday I noticed after I took my afternoon T3, exactly two and a half hours later the horrible feeling crept back for a day or two. I am starting to see this trend that I have perhaps been on too much medication. I go back to the doctor Tuesday and will update her on my progress I can't wait to see what she says!
I am 57 and have had Hashimoto's for about 6 years. I know the thyroid dies out over time and it makes sense to need more medicine. But last September when all this started I went gluten-free and I'm reading that sometimes when you go gluten free your thyroid improves enough to reduce medicine I'm hoping that's what's happening to me that all along. My antibodies went from roughly 160 to 27 over about four months so the gluten free really work for me! And maybe I really did need a reduction and not an increase in medicine. I can tell you the T3 reduction late in August was like a miracle.
If you google the symptoms of too much T4 or too much T3 it is exactly what I've been experiencing. But what I can't really explain is sort of how it comes and goes so quickly. It feels like my body suddenly gets overly saturated with thyroid meds and I kick into this severe hyper state where I feel so bad until my body has a chance 2 process the meds. Also I think it has taken me a year to get this bad so I just don't think you see an improvement over night when you adjust medicine up or down I'm expecting it to take a few months before I really feel normal if in fact the reduction in T3 continues to help as I continue to reduce.
I know this is a long post but I completely sympathize with you this is horrible and I have been going through the same thing for almost a year. Please let me know if you find anything that works or helps and I am happy to let you know my progress as I continue to reduce medicine to try to find the right balance of T3 and T4 I really think that it is going to fix the problem.
Whilst it’s not nice that someone else has the same symptoms/patterns, it’s always reassuring!
I’m intrigued by the T3 aspect as I’ve only ever been on levo, and as I said, up until last year I was always fine. In hindsight, I’ve had dizzy days, or days where I’ve felt lethargic but I never really thought much about it then. Mostly, I was fine. I find it odd that I can’t now get settled on levo again but maybe I’m just not properly medicated yet. I think there are still other aspects of my health (sex hormones, Vit levels) that aren’t optimal yet and maybe those are affecting things.
I hear what people say about the gluten free option; I’m convinced by the science but honestly, I’m not an organised person and usually I end up making two or sometimes three sittings of dinner each night anyway, so to factor in another dietary option would just add to the stress I’ve been trying to minimise over the last year! I have cut back (I realise you can’t be partially gf!) and I have adopted a much better, more wholesome diet but I’m trying to use the gf as an absolute last case option!
I’ve commented on other posts that the periods of ill health seem to be cyclical, and I’m trying pg cream as of tonight (ooh, the excitement 😜) so I’ll keep everyone posted as to how that pans out.
Thanks for your reply, it’s nice to know you’re not alone. 😉
Several research teams have found that patients who don't do well on levo improve when T3 is added to T4. It is usually in a 3 to 1 or 4 to 1 basis (T4/T3). Also vits/minerals have also to be optimum.
Murphysmum - small update on my case which is very much like yours.
First, I reread your post and this sentence jumps out at me to be EXACTLY what I have dealt with for a year:
I seem to lurch from being fine to having all these symptoms every few weeks.
It has been a roller coaster! The bad days are so bad - the fatigue, head pressure, weakness, and then it goes away. Just weird!
Saw my doc yesterday. She is running another big batch of blood tests (the first round they took 26 vials of blood! - all came back ok). She is going to run another different round and see what comes up. Sjogrens? Lupus? Chronic Fatigue Syndrome?
We talked about the fact that my symptoms started when I started Armour LAST APRIL 2017 and have progressively gotten worse over the last year - noting that I went gluten free last Sept which totally eliminated my high TPO antibodies (the antibodies that show you in fact have Hashimoto's). My antibodies were 127 in Sept but were 28 by March. And also discussed that I had a single thyroid nodule in 2017 that disappeared in early 2018 - doc said probably from going gluten free so good! And during this period my bad days started outweighing my good days. So possibly as my Hashimoto's improved, I simply have been overmedicated, but can't make that call until she looks further at more blood work. It makes sense and if you google thyroxine over medication I have EXACTLY those symptoms - fatigue, weakness, intolerance to exercise, fatigue, head pressure that come and go - as our bodies try to handle the extra T3 and finally get overly saturated so we feel so bad for a while.
Yes - it is comforting to know there are others out there with this battle! It has been so frustrating! Let's stay in touch as we try to figure this out!
I’m having a particularly bad day today - headaches, pressure, pains behind my eyes although the fatigue is actually ok.
I’ve just started progesterone cream (yesterday) so wondering if the lay is giving me the headaches (due to the estrogen fighting back!).
I’m two weeks away from my 6 week blood test and I’m almost certain I’m over medicated.
I’m going to email Dr Toft as I did say I was a little sceptical of the dose increase and he seemed to think it would be fine. I accepted his opinion as I figured maybe I was better placed nutritionally and stress wise than I was last time I was on that dose. However, I fear it’s too much. I’m not sure where I go from here - 150 too little, 175 too much.
I guess also that if anything the PG cream will potentially make me even more overmedicated but I’m not willing to suffer the monthly problems and pain I have any longer. It might take 3-4 months for any improvement anyway so I want to get started as soo as I can.
It’s all so tricky to get your head around and there’s so many facets to every thyroid problem. I feel sure everyone on here knows way more than their gp after just a couple of hours reading!!
Yes, let’s keep in touch - it’s always reassuring to have someone you can compare with 😉
I don't take any estrog or prog but I know that affects your thyroid as well so yes just another thing to work into the mix! I am told the "triad" must be balanced - that is the thyroid, the adrenals and the ovary hormones. If this is not balanced you can feel really awful and that is what's happening to most of us, I think.
I will save this link and touch base with you after my next tests/appt. This is truly a test of patience for sure as you wait "X" number of weeks for the next test/doc appt! Plus I am convinced that blood test DO NOT show what is really happening at a cellular level. I have read hundreds of people in forums saying they feel dreadful but results are within "normal" range. Hang in there Murphysmum! And let me know if you learn anything of value - or even if you want to complain to me if you have more of these bad "spells"... I totally understand!
Doc is doing a third large batch of blood work but I think she suspects I am overmedicated on Thyroid medicine. And when I look at the facts, I think so too.
My symptoms (bad fatigue, head pressure, dry mouth, exercise intolerant, achy/fluey) ALL STARTED when I switched from 75 Synthroid to 60 Armour May of 2017. That was too big of a jump and more med than I needed looking back. And symptoms continued one and off since then even though I have tweaked meds but NEVER LOWERED them (and by the way when I am symptomatic I have them all at the same time - not just one or two). I went gluten free/dairy free last Sept and symptoms came more often starting in Nov/Dec. Also, in the 6 months my thyroid nodule (I only had 1) has disappeared AND my thyroid TPO antibodies went from 130 to 17. So doc thinks my thyroid has been doing so much better since late last summer there's a chance I am experiencing t4/t3 overdose. The symptoms of overdose are exactly how I feel. I literally felt the worse ever the last 3 weeks in Aug totally miserable. The doc cut my T3 (first doc to cut and not increase) and within 3 days I felt like a new person! So what does that say!!?? She ordered a bone density test to compare to my last bone den test a few years ago because if you are overmedicated you can have bone loss and I just had that done today. I see her again in 3 weeks and my guess if nothing else surfaces from the third batch of blood test, that she will start reducing my meds slowly and see what happens. It makes sense to me and I am relieved just to know we have a plan! Right now I am having a few good days followed by a few not great days - I think a little less medicine and my body is better but still reaches a saturation point and I feel bad - but NOTHING like late August - I would LOVE to reduce my meds more and see what happens but I told my doc I would not do that!
This last year has been horrible - days where I think how am I going to go to work? Then followed by good or at least bearable days. But we just keep pushing through. I won't know anything new until I go back to see my doc end of Oct and will check back with you then. Update me if you learn anything new! I am so happy to be able to communicate with someone who is going through something so similar!
This sounds similar to how I feel when the pharmacy, unbeknownst to me, switches manufacturers of my Bupropion. Flu like symptoms, brain zaps, ringing ears, brain fog, depression. It would happen (And still does) like the day after I’ve picked up my refill from the pharmacy. Also it sometimes happens with my Cytomel medicine. It lasts about three days. Just something to consider.
You have a high dose already and where is it going to stop? More Thyroxine doesn't make most people feel better. Are you taking selenium? (200-400mcg/day, in the morning with Vit. E). I started taking it last year (100mcg/day, now up to 200) - after my last blood test, the doctor reduced my dose of thyroxine from 112mcg to 75. I recommend reading Dr. Izabela Wentz's books and trying her protocol. It IS possible to do something about Hashimoto's. It just takes a lot of work, reading, diet change, etc. Don't give up!
I am taking selenium, zinc and Vit E, amongst lots of others!
I’m hoping that maybe levelling out my progesterone will help (I know people have reduced their dose sometimes after this) and if not, I’ll look further into T3.
I’m not convinced I convert properly, I think it’s ‘ok’ but not great.
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