grrrr

[Carlylouise90]

I am started to get a bit peed off with my endocrinologist. I ended up in A&E 3 weeks ago as Endo thought I was having a adrenal crisis and she wanted to test my cortisol level (which came back fine). I cannot tolerate Levothryxine (tried 5 different brands) I get really bad ear problems when I take the levo after 6 days. Something happens where my ear swells up from fluid behind the ear drum, my eardrum is retracted and abnormal and I get the horrible migrane with the vision problems, vertigo and dizziness. It's the worst thing ive ever felt and it's happened everytime I try and take the levo. (5 years I've tried and stopped everytime i get to 6 days so I don't make it worse) I was told 6 weeks ago my TSH was 88 and to try and stay on the Levo until my consultant appointment. 4 weeks in, I've permanently damaged my left ear and seeing a specilist about it! When I went to A&E 3 weeks ago another Endo came and saw me and told me to come of the medication and get my ear better and than we will discuss going forward. My TSH was 29. So I've not been taking any Medication for 3 weeks. My ear is now 80% better due to coming off the levo even though i have some damage left to it. I called my Endo up last week to say my ear was better and I need to get back on mediation as I have hashitmos thryoidist and don't want my TSH to go back to 80 plus. It's been such a round about. She hasn't prescribed me anything apart from Levothryxine Teva again? told her last week that is the one that makes me the worst. she told me she will get the pharmacy to order in the levo liquid as it hasn't got fillers in.. a week later I call the pharmacy and they haven't even been told to do it from her so they no nothing. I keep trying to call her and her sec and they wont answer. I've left voicemails. All I want is some medication!!! How bloody hard is it. My TSH is probably over 70 by now.. 😥

[Jazzw]

Has anyone considered offering you T3 (liothyronine) instead? I’m wondering what it is about the Levo that’s messing up your ear (it’s a real puzzle!).

[Carlylouise90 in reply to Jazzw]

I trialed t3 for 4 days and got bad chest pains trapped wind that took 4 weeks to go and diareah and lost 4lbs in 3 days.. had heart palptations too. they took me of it x

[SlowDragon Administrator]

Here's a full list of all options available in UK

Levothyroxine

Liquid Levothyroxine

Liothyronine (T3)

thyroiduk.org.uk/tuk/treatm...

Your endocrinologist should have given you prescription for liquid Levothyroxine

[Carlylouise90 in reply to SlowDragon]

That's what I'm waiting for

[Jazzw]

Oh, hang on. I’ve just read your very first post here. And I’ve seen now that you were no better off on T3.

So... when un-medicated, your TSH is really high but your FT4 is low normal and your FT3 is reasonably high in range? Or have I misunderstood?

If not, that sounds to me like it *could* be TSH resistance. Anyone suggested that?

endocrinologyadvisor.com/ho...

[Carlylouise90 in reply to Jazzw]

That's right. I had T3 and ended up with chest pains how ever I am happy to try that again on a lower dose but endo hasn't said that. My tsh comes down perfectly when i take levo t4. but i just get so unwell. ft4 is low range and t3 is high range yes. Xx

[Nanaedake]

Why don't you ask your GP to help you sort it out? He could contact the Endo for you. Otherwise contact the hospital Pals team, explain the situation and ask for their help. You do really need some medication.

Also ask your GP to test all vitamin levels.

[Carlylouise90 in reply to Nanaedake]

I asked the Dr and he has contacted her twice for me but ive now got her secs number so it would be easier for me to call her

[Nanaedake in reply to Carlylouise90]

Well if you don't get anywhere then ask PALS, Patient liason Service to help.

[McPammy]

If your TSH is that high you must be feeling very unwell indeed.

I’d get to A&E and try and get some T3 medication. If you can’t tolerate Levothyroxine why hasn’t your Endocrinologist tried you on T3 medication. You need to be very careful letting your TSH go that high for a long period. It can cause severe health issues. Myxoedema can happen when left untreated for too long. You need T3 medication.

Can you go private??

[Carlylouise90 in reply to McPammy]

they've tried me on t3 and I got chest pains and ended up in a and e. Plus diareah and lost 4lb in 3 daysand trapped wind that look 4 weejs to go. endo took me of it. I ended up in a and e 3 weejs ago due to severe migrane etc and couldn't see and veritgo n a different endo saw me and told me to come of my medication until my ear cleared up and he wasn't worried at all about me slipping into a coma etc

[Carlylouise90 in reply to McPammy]

I'm tninking of going private.

[McPammy in reply to Carlylouise90]

I think you should to get to the bottom of your problem and get it sorted soon.

Last year I had real issues trying to take Levothyroxine. Every time I took it my blood pressure would soar. I’d end up collapsing, not fainting, complete muscle loss of strength. It effected my eyesight. I had double vision. Really bad migraines. But worst thing was I had no strength or energy. I was switched to liquid Levothyroxine. I could then take it in small doses to work up my bloods. I then found out I was a poor converter. I have the gene DIO2 as positive. However, when I was finally put on T3 everything improved dramatically

With having a very high TSH of 36 my adrenals and cortisol was really low too. This also affected my strength levels. I was dizzy, nauseous, weak and could hardly see. T3 also brought up my cortisol levels. Have you had your cortisol or adrenals checked. Now unbelievably to me, I go to the gym 3/4 times a week and lost 27lbs of the 30lbs I put on. I’m telling you this as there is hope. If you can somehow get some Levothyroxine or T3 in you you should improve dramatically.

[Carlylouise90 in reply to McPammy]

T3 didn't give me the symptoms of what levo does. I just got chest pains and apparently its a side effect. I had heart scans bloods obs chest xray everything came back perfect. so i know even when i getting chest pains my heart was fine. I tried again last week and within 1 tablrt my chest was on fire. it's so weird she gave me beta blockers to have with the t3. I took 3 beta blockers a day to stop the heart palptations that I apparently would get.

I had my cortisol level checked last week at 2pm in afternoon and apparently it was fine. That's the only test I've had done x

[NWA6]

Oh Carlylouise90 😞 what a rollercoaster you’re on. I don’t understand how these ‘specialists’ can be so heartless and thoughtless. Leaving you in that state for so long, life must be really difficult atm. I hope you find a solution soon.

[Carlylouise90 in reply to NWA6]

thank you. I've just sent my endo sec another messahe saying im gonna make a complaint to pals. She's not in today so hopefully she will get it sorted tomorrow. I'm also on talks with the pharmacy trying to get to the bottom of it

[NWA6 in reply to Carlylouise90]

💪 good job! It’s amazing how strong we can be even when we’re so weak! You kick some butts!

[Carlylouise90 in reply to NWA6]

thank you xxx

[JoyCA]

When you first started the T3, how much was one tablet? T3 is 3x as string as T4. Fast acting . I can’t tolerate T4 and tried so many times and types. My TSH was too high and I felt like a dead person but couldn’t tollerate more meds either. I’ve been slowly increasing my T3, taking only a quarter of a 5 mcg tablet for about a month at a time before increasing by another crumb or so and have finally managed to increase from 5 mcg a day to 11mcg total divided in 2 doses. Such a tiny amount and tiny increase is making me feel so much better. It is crazy how sensitive I am. Maybe you are too. I’m also taking ashwaganda once a day in the morning for adrenal support. Too much thyroid hormone too soon can stress adrenals. Going super slow is finally working fir me.

[Carlylouise90 in reply to JoyCA]

I was giving a 20mg tablet. 10mg in morning and 10mg In evening. I think I was told the 20mg is equilvant to 100mg levothryxine. I than took it down to 10mg a day. 5mg in morning and 5mg in evening .

Than I came off it as endo has said to as i got bad chest pains.

I decided to try again on my own accord. and i cut the 5mg in half.. took it the following and got chest pains with an hour..

endo gave me beta blockers 3x a day cause she thinks ill get heart palptations with it.

did you get any chest pain?

I'm guessing that's what happening. But with t4 i had the smallest dose I can possibly have and done it every other day etc and still couldnt tolerate it.

[JoyCA]

I have not gotten chest pains with T3. I started with such a small dose. A quarter of a 5mcg tab. And once I got to 5mcg stayed there a ling time until I got brave enough to try extra nibbles. My doc has been encouraging me to take more slowly. And I mean slowly! You must mean mcg and not mg. That would be very high. It has taken me abt 2 years to get to 11 mcg. I was waking in the middle of the night with my heart pounding. I thought at first it might be too much T3. But that just didn’t make sense because it didn’t happen clise to taking T3 but the furthest away from it. I started adding additional crumbs in the afternoon and sometimes evening and the waking and heart pounding is almost gone. I think my body was desperate for wanting more. I was barely functioning and very depressed. So bizarre how such a small increase can make such a big improvement with me.

[Carlylouise90 in reply to JoyCA]

how can you do a quarter of 5mg? the 5mg is so small I can hardly cut it?

i dont no weather to try it again but everytime i take it I get the chest pain and I lost alot of weight in a short space of time being on it.. if someone told me the side effexts will go I would stay on it but the trappedwind was bad.. took 4 weeks go go and I was in agony. I was taking the beta blockers. I wonder if i tried without them how it would be.

I just don't no what to do anymore

my heart was pounding while taking the beta blockers x

[JoyCA]

It is a challenge. When I try to cut it, most of the time it just crumbles. I have better luck biting a little nibble with my teeth. Seriously started with less than a quarter. Have you tried the tiniest piece possible to see if you get the chest pain? Does the chest pain stop with no T3? I have had no weight loss either. I still do every thing I can to stop additional weight gain. I’m hoping that when I finally get up to my optimal dose that my weight will be manageable.

What did your labs look like before starting T3?

[Carlylouise90 in reply to JoyCA]

no chest pain before t3.. and when i stopped t3 the chest pain stopped.

my tsh was 58. t3 was on high range and t4 in range but low. x

[JoyCA in reply to Carlylouise90]

There are a lot of people on here much smarter than I am. You have obviously made a connection with your T3 and chest pain. Your TSH is way higher than mine and looks like you need something! My reverse T3 was always high and free T3 lowish. We have different profiles. Did you have Hashi antibodies checked?

[Carlylouise90 in reply to JoyCA]

yes I have hasnitmos thryiditus at the moment d