Giving up..: The last thing i posted about was... - Thyroid UK

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Giving up..

amie0507 profile image
13 Replies

The last thing i posted about was Mercury vs Teeva...(im on 175mcg) I thought I had struck lucky and it was going to be the answer to all my problems, I swapped to Mercury ..but the symptoms continued...I swapped to taking them in the night to see if that would help but no...I was still waking after 10 hrs sleep...wanting to sleep more and getting the 'spacey' feeling all the time,anxiety etc....I went back to the doctors in tears on Friday who sent me for blood tests and made another app tonight for the results...on Sat I woke up and felt fine..for 10 mins..then I started getting a headache and that was it...dizzy, lethargic, no energy,I spent the whole of the day on the couch unable to function crying because this has been 3 months solid now....that night I took 150 Mcg and felt better (slightly yest) ...but this has now affected my relationship..I was horrible yesterday to a person who doesn't deserve this or this 'half me', when we met I was outgoing and happy and full of energy but fast forward 7 months and I don't recognise myself anymore , we are now basically on a break...I feel so depressed and teary and don't know what to do anymore...I took 150 last night again and feel slightly the same...the lethargy is probably due to not sleeping last night...but I don't know what to do....

Sorry to rant but I feel like this is the only place I can talk about things as most people are in the mindset 'well you look fine...'

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amie0507
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13 Replies
France1 profile image
France1

You are not alone - that is the first thing.

I also know that I make my husband's life difficult. He does not deserve it but I am also not the person he married. Life has done a complete U turn and my priorities are now rest and being un-stressed, he wants to get out there and do things!

I am not sure what the solution is, except that perhaps we need to all find a better way of explaining what we feel to those around us.

It is a beautiful sunny day here and I want to be in the garden and I have lots needing doing but it will not happen. I will be out of breath by the time I get out there. My legs are so painful that walking, pushing or any gardening activity (once a great joy) is just not going to happen.

I hope you feel better soon, and do feel free to rant at any time. It helps to know we are not alone.

Skyebeardie profile image
Skyebeardie in reply to France1

Just wanted to touch base and say me too. My garden was my joy but I can't manage today. I save myself for a one hour dog walk because she needs me. My husband is aware I am different but doesn't get it, if I leave all the dog walking to him he gets irritated so I set my priorities to keep him happy and me not too miserable. 10 mins into the walk I am always grateful I went. It's such a strain thinking I must do something but I find if I do a little it lifts my spirit. I hate what this has done to me and the hours I spend researching but I am not a quitter, we will find our way out.

Clutter profile image
Clutter

Amie0507,

You were advised to post your most recent thyroid results and ranges a couple of months ago as it will help members to see whether you are optimally medicated. Did you get them from your GP?

amie0507 profile image
amie0507 in reply to Clutter

I asked the doctor for them and he said he would print them out but never did and in my hurry to get my new bloods done I forgot to ask, I then asked the receptionist who said it would be £10 ...I had another set of bloods done for everything ferritin etc and when I went for the results he said everything Barr my thyroid levels had arrived and asked if I had them done! I advised I had handed all of the forms in he gave me so if they hadn't sent them he'd need to chase them up, I was given a prescription for fultium and he asked if i was happy to wait until my next bloods due in May , as I was feeling a bit better coming off the teeva I agreed (foolishly) and have been taking Mercury for the past month , but as you can see...i felt good for a day or so then back to square 1 for the reminder of the montb resulting in my (slightly embarrassing breakdown) ... which I'm now doing daily....I have app with doc tonight at 5 so I will insist on a copy or if not will manually write them down if I have to....I suspect now that I have been over medicated...again.... :(

amie0507 profile image
amie0507 in reply to Clutter

I've just been to the doctors..

Serum TSH level 0.45 mu/L (0.30 - 6.00)

Serum free T4 level 22 pmol/ L (10.0 - 22.0)

My dose is 175 Mcg ....

Clutter profile image
Clutter in reply to amie0507

Amie0507,

That looks like the right dose. TSH is low in range and FT4 is top of range. It is possible that FT3 is low and making you unwell but the only way to check that is to order a private thyroid test via thyroiduk.org.uk/tuk/testin...

I suggest you also have ferritin, vitamin D, B12 and folate checked, either by your GP or privately, as deficiency is common in hypothyroid patients and symptoms can be similar to hypothyroid symptoms.

amie0507 profile image
amie0507 in reply to Clutter

Hiya Apologies for the late response...

Due to me being 0.45 so just 0.15 over the very lower part of TSH the doc said although in range I could be overmedicated? On Sat I suspected being over as I was showing kind of the same symptom from when I was over on 200mcg (I was then dropped to 175mcg) so I just took 150mcg, Sunday I felt ok (ish) tired.. but I wasn't getting AS 'spacey', took 150mcg again Sunday night and yest again tired (but then i'd had no sleep) and took 150mcg last night ...but here's the difference.. I have felt tired , a little bit 'out of sorts' but not horrific , 20 mins ago though went a bit hot, felt like I was going to faint and then threw up (sorry) ...now...just feel a bit tired again....Could this just be me getting used to 150mcg..??

Clutter profile image
Clutter in reply to amie0507

Amie0507,

Results were within range so you were NOT biochemically over medicated. If you *feel* over medicated then reduce dose and see whether symptoms improve. It usually takes 7-10 days to feel any difference when dose is reduced but if you are very sensitive to dose adjustments it may be that you feel the reduction.

kittenmittens profile image
kittenmittens

Hi amie0507,

With your results looking like you are on the right dose of Levothyroxine, but with you still feeling awful, could it be that the Levo just isn't working for you? Perhaps you might want to start looking into alternatives such as Liothyronine (T3) or NDT (Natural Dessicated Thyroid).

I was on 175mcg Levo, all my results looked fine, but I was exhausted and depressed. I am now on Levothyroxine and Liothyronine and feel much better. This is just my personal experience and everyone is different, some people do well on Levo. But it just might be something you want to consider.

amie0507 profile image
amie0507 in reply to kittenmittens

Hi KittenMittens

I have no idea ,I just can't believe how I used to take feeling' fine' or energetic for granted, Have had this all my life but its only in the last 10 months ( feels longer ) that I have been fluctuating for no apparent reason....I briefly had a 4 month period between Sept-Dec when I dropped from 200mcg to 175mcg and felt ok..good in fact! But come Jan I started getting all symptoms again... .I asked the doc Mon about checking my T3 and he said that it's rarely done? Did you go private? Doc suggested I drop to 150mcg and have bloods done in another 2 months, see what that's like and THEN if still the same he will refer me to Endo again but you usually have to wait approx. 6-8 weeks so that will be 6 months after I first started going to him ...Don't get me wrong he's a good doc and seems to be trying to work with me but I don't understand the reluctance to check T3 or refer me to Endo... :-/

kittenmittens profile image
kittenmittens in reply to amie0507

They should test your T3 if they ask for it to be done. They didn't test mine until I started insisting, and sometimes the labs don't do it (not entirely sure why, my Dr says there is no drop down option for T3 on the form and has to be written in, so it's possible the lab doesn't always check as well as it should). I didn't go private but it took me a while to find the right NHS GP and endo. The GP's often seem to not know much about this condition. It also took some insistence on my part to be referred to Endo. You could make another appointment with your GP and explain that you don't want to wait any longer for the endo appointment due to the waiting times and how bad you're feeling.

I see from your previous post that you did fine on the Mercury Levo but the problems started when you changed to Tevo, from what I can tell you changed back to Mercury a month ago, so it could be that your body needs a little longer to adjust back.

It also sounds like you haven't felt well on the 175 or 200mcg doses and have only just started back on the 150mcg dose again. Any changes can take up to 6 weeks for the body to properly adjust.

After 6 weeks if you're still not feeling better you could always try another brand change, see if there's one that suits you better, but you have to wait 6 weeks after every change so it might take a while to experiment.

I'm a bit confused about the timeline of when your results started changing, when you changed brands and when you changed doses. It might help you to get copies of your results and make a list of them along with when your medication brand, and, levels changed, and what your symptoms were. This might help you pinpoint when things changed and what parts might be related to each other.

Also, with regards to results, try to get blood tests done at the same time each time, leave as long a gap as possible after taking your Levo (so if you take it in the morning get your blood done the next morning before taking Levo), and some people recommend you fast beforehand (you can drink water) although this may only be practical if getting a morning test (don't do it if you'll get so hungry that you will faint or something). This way the results won't be being interfered with by other factors.

It is odd that you've been okay with the condition for your whole life but it's only been recently that you haven't felt well. Could it be that it's not directly to do with your thyroid or the medications. I saw in your previous post that you were having vitamin levels checked, even though the Dr said the results were 'normal' it might be a good idea to post them on here and see what people think? Perhaps a diabetes check might be a good idea. Or have you changed any other medications such as the contraceptive pill? Or is there anything else in your life that has changed?

I know it is really hard to fight and figure all this stuff out when you're exhausted, but you can't give up. I know how impatient you will be to go back to how you were, but unfortunately unravelling what is wrong and trying to fix it can take trial and error and patience, but it will be worth it not to feel this bad anymore. You can do it.

amie0507 profile image
amie0507 in reply to kittenmittens

Hi, sorry I haven't replied, it's been a roller coaster this week...

But just to reply to the time line issue, last year I was on 175mcg and had been on that dose steadily for a while ...In June I started to get symptoms that I had never had before,heart pounding, extreme fatigue, dizzy Ness to the point of blackouts..I couldn't function,I thought I was dying...until I started reading about being over medicated. ..I'd only ever been under so these symptoms were completely alien to me...I'd went to the doctors (who was an arse hole BTW! ) and got bloods done...at the same time i insisted on being referred to an endo,when the results came back the doc told me that I was under medicated..I disagreed but he was insistent so I agreed to play it his way until I saw the endo and increased meds to 200mcg...I the meantime went on holiday and had the most horrific time....sleeping all day, heart palps etc..when I got back it was time to see the endo, went along and got blood tests etc ...a few days later I had a call to tell me to drop to 175mcg immediately and they were faxing my doc straight away (no idea what the results were! ) but...I dropped back to 175mcg and noticed a changed straight away...after a few days and then a few weeks I was back to myself....Until approx Jan...iI started to get the symptoms of being over again minus the heart palps ...went to docs and got test again which were in 'normal' range so stayed on 175mcg (I didn't get these results) ...i couldn't figure out what the issue was until I noticed the change in branding to Teeva, I read up about it and with the negativity so the next prescription thinking this would solve all I asked for mercury, in between this I had had more bloods done which doc had included all of the vits, when I went for results he said that all of my results had come back Barr my TS'S and asked if I'd had them done...I confirmed that I had handed over all the forms so if they were missing he would have to check...at the time I was feeling slightly better switching to mercury so he asked If I wanted to wait until my next set were due in May...I agreed and left with a prescription for Fultium (Vit D) to also start taking...a few days later the symptoms started again (I wasn't taking the Vit D at the same time as my thyroxine which i have learnt from the site!) ...I persevered thinking i needed to trust that it was the brand that was causing the issue but it got to the point last week where I couldn't take no more and ended up in the surgery in tears prompting this post....

Since then...I decreased to 150mcg and was taking them in the evening ....'most' symptoms decrease ie the fatigue/brain fog, I was just tired...like I'd been beaten up tired! I started to have a tiny bit more energy in the day though ...so in my head I thought...why not go back to taking it in the morning ? (makes more sense for me), it was the dose that was incorrect....

I took it yesterday morning...wtf...fatigue,anxiety, tiredness to wanting to sleep where I was sat(at my desk)..got home and slept from 8pm until this morning...decided to go back to nightime. .I haven't had them today and haven't had any of yesterday's symptoms...again...just tired...have bought a pill box and going to start taking them at 9 each night (I never eat after this unless out for a meal and only drink water /juice) ....I don't know whether this is bringing some mild form of depression on now though...i feel less of a person, I'm young and have so many occasions coming up birthdays (ive cancelled going on night tonight) ,races,weekend trip away, holiday.... but I'm petrified,Obviously im not drinking with all of this going on but with so many social events i just want to curl up in a ball and not move..i just get upset because i can't feel like this forever I feel like my life is over...😓

kittenmittens profile image
kittenmittens in reply to amie0507

It does sound like you might be depressed, I was really depressed until I got the right medication for me. I think not drinking is really sensible, as alcohol can end up making you more depressed the next day and just generally doesn't do your body any good. When you're feeling depressed it can be really hard to imagine ever not feeling that way, but I'm sure you'll get to the bottom of what's going on and will feel better again, until then you just have to stay strong and work on finding out what's going on. You'll get there xx

As I said above, getting copies of all your results could help you figure it out, and folk on here can help you decipher them. They can also help with vitamin levels. And other checks such as a diabetes check might be worth doing. You could also get your adrenals checked. I don't know much about this but others will.

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