Help Please!!!!

[Carlylouise90]

Hi- You are all probably had enough of me so I am sorry but I do need help so please help me. I am going to my GP tomorrow to discuss this and hopefully she will refer me back to my endo so I need to get as much information as I can. (Sorry if you've heard this more than once but for people that don't no my reason for needing help.. here it is.)

I was told I had a UAT for 5 years ago. Only my TSH was looked at and was given Levothryxine. After 5 or 6 days of the lowest dose I ended up with severe migranes, dizziness and blurred vision, really weird brain zaps which are horrible to the point I couldn't get of the sofa or look at light so I came off them. A few days of not taking the Levothryxine I would start to feel better so I knew it was the tablets. Made me really unwell. Long story short.. this is how it's been for the last 5 years. I've stopped and started the tablets but somehow managed to get TSH back down a few times. In this whole 5 years my T3 has never been looked at. T4 has always been in range but not optimal -. Never gone out of range though.. I have tried levo Teva, activist, mercury pharma and workhardt and they all seem to have the same effect on me. It got so bad I went to drs who told me to stop taking the Levothryxine for a few months and let's see what my tsh levels do but she reminded me that both of t3 and t4 are normal and I'm still producing the hormone .

This year in March after feeling ill (drs thought it was down to me not taking the tablets, but may have been labrythitus) I found out My TSH was 44.6. so in 6 months it had gone from range to 44.6. I was told I need to go back on levo. Again, the same feelings happened. I managed to get it down to 18 by taking levo every 3 days, but than it shot up to 58.6 in 3 weeks plus for the first time ever they tested my antibodies which came back 200+. and t3. Dr didn't seem worried as T3 (optimal) and T4 were apparently still in range but she referred me to a specialist due to me not being able to take levothryxine everyday. I had a scan done which showed hashitmos thyroiditus. I than decided to try the levo again and managed to get to 6 days and again couldn't function, couldn't go to work.. paracetemal wouldn't even touch the pain so again came off and saw my endo.

My Endo prescribed me Liothyronine 20mg tablet. (half the tablet 1 half in morning and 1 in evening) plus 3 beta blockers (propronaol) . She explained that the T3 might make my heart race and give me palptations and the beta blockers will stop it. I was happy. I started taking these last Friday and by Friday night I had a weird pain in my chest. By Monday, the pain was there constant, weird pressure and annoying. So I went to drs to make sure i was ok to still take them and he said it sounds like wind and to get some rennies. By Monday afternoon I had so much gas, but diarreah all evening and my heart was going so fast and chest pain was worse. and couldnt feel my legs. Took me 4 hours to try and fall asleep but i felt like my body and heart wouldn't relax and i got really scared so i called 111 who called an ambulance who took me to a&e. I had a chest xray done, heart ultrasound and bloods and everything looked good. He did list of all the side effects of using liothyronine and it said chest pain was one of them and all my symptoms are the same as someone who tends to be hyper not hypo and he thinks it's the tablets. He also mentioned my TSH is now 88. (highest its been but again my t3 is in range and optimal and t4 is in range. He said I need to speak to my dr regarding the medication for thryoid and i went home. Haven't taken any hormone or beta blocker for 15 hours at this point so ive carried on not taking it hoping my chest pain and everything else will calm down - (i told dr this, he said its my choice, only been taking it for 2 days at this point) Tried to get an appt today but dr cant see me till Friday. Gonna try and call for urgent appt tomorrow as ive been home from.a and e for 5 hours and feel very unwell with chest pain still and other symptoms.

What else can I do?? I have no idea why I keep feeling over medicated (if that's even what it is) on levothryxine. I have cut the 25mg in to halves and 3/4 and it still happens. Took 50 and 100 and felt even worse. I can't get over day 6 without crying and going to Drs. I'm starting to worry that actually my body works ok with a high TSH level but a in range t3 and t4. Can that even happen? is it healthy?. I've uploaded my last thryoid in september which shows a optimal t3.. in range t4 but not optimal and a high TSH. Is there a chance my body is producing enough hormones how it is and may not need the hormone? but the signals just not getting there as good as it should be. I haven't had any other thryoid test and endo said she won't be doing anymore testing

Dr and endo told me everything else is all in range i.e iron b12 folate vit d - but I am on iron tablets for my ferritin on my own accord as its on the lower side.

ferritin - 37

folate 8.2

vit d 58

b12 468

Any clues on what to do? i dont wanna do this anymore x

[greygoose]

Has nobody ever mentioned the fact that you have Hashi's? I would have thought that was rather important. It means that your levels can do funny things.

Your TSH is high, but TSH isn't a thyroid hormone. It is a pituitary hormone. Has nobody investigated your pituitary? A head scan, or something?

Your TSH is low, your FT3 is mid-range - who told you that was optimal? Optimal is not a number on a lab test, it's how you feel. If you don't feel well, then it's not optimal. And, I think that what is happening here is that your thyroid is making more T3 and cutting back on the T4 to save energy, possibly.

In any case, with numbers like that, the problem is unlikely to be that you don't need the hormone. You do. Your thyroid is struggling to make it. It needs all that TSH just to stimulate it to make those feeble amounts. So, the problem must be with the tablets themselves - probably the fillers. You say you've tried several brands, but the results are the same. Has no-one suggested liquid levo? That has no fillers. It's more expensive, so that's probably why they haven't suggested it - if they've even heard of it, that is. But, you could try asking. It's doubtful you can go on like this much longer before you thyroid fails completely. Well, that's my opinion, anyway.

[Carlylouise90 in reply to greygoose]

I really appreciate your reply. Yes as stated on the post, I had a scan and was told I have hashitmos thryiditus.. Dr didn't explain it but said its more likely to be hashitmos so yes fully aware of that and to know my results can go crazy. My TSH is now 88.

Doctor said it was optimal. However I completely understand where your coming from... My T3 isn't in a bad way though is it? My t4 needs to be higher..

Never had scans done on the gland in brain.. that's one thing i was thinking off next.

And no they haven't even offered the liquid form.. can a dr presribe that? have they not got the fillers in? Had a scan done and didn't shoe any nodules raised or anything bad just enlarged thryoid.

Do u think if i took mediation for migrane while taking the levo it would help? as migranes are what i get... I'm guessing the dizziness blurred vision n pressure could all be from the migrane?

[greygoose in reply to Carlylouise90]

Yes, I meant a brain scan, to see if there's anything obviously wrong with your pituitary. Could be a benign tumour or something, which could have a bearing on your migraines as well as the exceptionally high TSH.

Your doctor doesn't know what he's talking about. Your FT3 might be optimal for some hypos, but most need it higher. So, whilst your FT3 isn't bad, it's probably not that good, either. And, it's not sustainable. Your thyroid cannot continue indefinitely like that. Sooner or later, it's going to crash. So, taking levo would not only increase your FT4, but would support your dying thyroid.

Liquid levo has no fillers, no. I'm pretty sure a GP can prescribe it, but I very much doubt he would want to because of the cost. You're probably going to have to insist on that one.

Whether or not you had nodules is neither here nor there. Most people do have them, but they're rarely a problem, so nothing to worry about, anyway. Your thyroid was enlarged due to the Hashi's.

I don't know if medication for migraines would help anything.

Your vit D is much too low, by the way. You should also be supplementing that.

[Carlylouise90 in reply to greygoose]

Hi. Spoke to a Dr earlier who is contacting my endo to let them know I need change of meds but until than I've got to take levothryxine again.. with painkillers to stop the migranes or at least help as i need some hormone in my body.

When I see my endo I will discuss liquid form of levo and looking at my gland in my brain.. hopefully irs a urgent appt and won't have to wait months.

Vitamin D is low?? Oh. what would u advise to take? i was taking a vitamin d oral spray but stopped as Dr said it was fine.

thanksfor all your help x

[greygoose in reply to Carlylouise90]

Doctors know even less about nutrients than they do about hormones - and that's saying something! If I were you, I'd go back to the spray, but do make sure you get the cofactors, vit K2-MK7 and magnesium. They are very important when taking vit D.

Hope you get your appointment soon.

[Carlylouise90 in reply to greygoose]

thank u so much. xxxxx

[greygoose in reply to Carlylouise90]

You're very welcome.