Suddenly become unable to tolerate Liothyronine Sodium after 5 years

[Florellina]

Hi

I am trying to make sense of a drastic turn in my health in the last 2 months and would be really grateful for any help.

A brief history is I became severely ill and hypothyroid following exposure to heavy insecticide use in my former home in 2011. I developed extreme joint pain and weakness to the point that I couldn't even chop potatoes without wearing metal wrist splints as my wrists were so weak and painful, couldn't lie on my side as it hurt my shoulders too much and they felt they could crumble away. You get the idea.

A year of treatment with Levothyroxine only didn't really help with my symptoms, but once I was put on Liothyronine Sodium I improved dramatically. By the time my daily dose was 15mcg I was symptom free and back to my former health, able to do endurance sport etc.

At the end of April this year I was exposed to insecticide again. Within 24 hours the whites of my eyes turned yellow and my eyes went blood shot and within 3 days I was in the cardiac unit with an irregular heart and atrial fibrillation. They said to speak to my endocrionologist as they thought it was due to my thyroid medication. However, my blood stats are they same as they have been for 5 years, during which I have been extremely well. I now can't tolerate Liothyronine at all since this has happened. Since I have tried 3 different brands, including one I could tolerate perfectly well previously, but when I take a dose, the heart palpitations, return, I get a pressure headache, my blood pressure rockets, I get breathless and jittery and generally feel like something terrible, such as a stroke could happen. My endocrinologist suggested coming off the liothyronine for 3 days and then taking a 1/3 dose for 3 days and then a 2/3 dose for 3 days and then seeing how I am. However, even 1/3 dose now brings on this extreme reaction. I therefore tried a 1/6 of my former daily dose and that did too. I therefore crushed the tablet and took 1/60th dose (which I could weigh out with a precision scale) and after 2 days of that I was awoken at 4.30am with a racing and jumping heart. The last time I tried to take Liothyronine sodium I also experienced sharp chest pain within a couple of hours of taking it and am now too scared to try taking it again.

My endocrinologist says it is like something has changed in my body and we need to find out what. He has ordered a celiac test and a 24 hour urine adrenaline test and we are waiting for the results of these. In the meantime I am going downhill fast with hypothyroid symptoms. The dreaded old symptoms are returning. My wrists are starting to hurt, my knees hurt just to stand and my shoulders are starting to ache and the ugly black bags have returned under my eyes, which went away once I was put on liothyronine sodium before. I am terrified of returning to how I was.

Does anyone have any understanding of why a body would react so severely to Liothyronine sodium (please remember I have now tried 3 brands including one I could tolerate perfectly well before) and any other tests it might be worth my asking for? Is there anything else people can take if they can no longer handle T3?

I am so desperate and would be so grateful for any help you are able to offer. Thank you in advance.

Best wishes

[Lalatoot]

Although it didn't do any good last time, have you tried levo again? As something has changed it might work or it might make a slight difference till you get answers.

[Florellina in reply to Lalatoot]

Hi

I am still on 150mcg/day levothyroxine. I am going downhill whilst on this unfortunately. I am still able to tolerate that. Just not the T3.

Thanks for taking the time to reply and for your suggestion though.

[greygoose in reply to Florellina]

Have you tried increasing the levo?

[Florellina in reply to greygoose]

No, not above 150 but I think I have a conversion disorder, such that I can't make use of it. Whether it's at 25 or 150, I feel the same. It is only with T3 that I am well unfortunately and now it feels like that product could kill me! It's such a nightmare.

Thank you though

[greygoose in reply to Florellina]

Unfortunately, you didn't give the ranges with those results you gave, and without the ranges, it's impossible to interpret the results. But, if - as I think - the ranges are similar to the ones we usually see, you do not have a conversion problem. You just look slightly under-medicated. Can you add the range, please, to confirm?

[Florellina in reply to greygoose]

Hi

Sorry! Sure. The TSH range is 0.1-2 mU/L, The T4 range is 12-22 and the T3 range is 3.9-6.7. Thank you.

[greygoose in reply to Florellina]

I'm really not sure about that TSH range. I've never seen one with such a low top of the range. But, doesn't much matter with TSH.

FT4 16.7 (12-22) 47%

FT3 5.1 (3.9-6.7) 42.86%

So, if you look at the percentages, you'll see they are very close together, which indicates good conversion. But, you are under-medicated, because they should be more like 75/80%.

[Florellina in reply to greygoose]

Ok thanks. I think my T3 will be a lot lower now because i can’t take it anymore.

[greygoose in reply to Florellina]

Ahhhhhhh so those results were on T4 plus T3? I thought they were T4 only. Sorry, come back all I said! You cannot tell how well you convert when taking T3. You'll be able to tell that when you get your first labs on T4 only.

[Florellina in reply to greygoose]

Ok thanks! Those should be available next week.

[greygoose in reply to Florellina]

But you were still undermedicated when those labs were done.

[Lora7again]

I am sorry to hear how ill you have been. Do you have any thyroid function blood results to share with us? We need TSH, T4 and T3 and any vitamin levels you might have.

[Florellina in reply to Lora7again]

When I was admitted to the cardiac unit my levels were:

TSH Less than 0.01

Serum free T4 16.7

Serum free T3 5.1

I know these are very low TSH and high in range for T4 and T3 but my levels have been consistently there or thereabouts even since I have been well. That was 2 months ago. I had my bloods done again last week and will have the results next week, and I suspect that they will show a higher TSH and lower T3.

Historically I've felt unwell when my TSH goes above 2 and have always been at my best when it is below 2.

I don't take any vitamin supplements now and don't know about vitamin levels, but in the past when I was just on levothyroxine before liothyronine sodium was added in took high dose B12, vit B complex, Vit D, zinc, selenium and none of these made any difference to my symptoms sadly. It was only the T3 that helped me.

Thank you for your time.

[Lora7again in reply to Florellina]

Have you tried taking NDT?

[Florellina in reply to Lora7again]

I think that's Natural Desiccated Thyroid? No I haven't. Do you think that's worth a try? I just worry that if I react like this to T3, that contains T3 too doesn't it? Won't that likely have the same effect? If not, how can I get a prescription for that in the UK?

[Lora7again in reply to Florellina]

I have taken Thyroid S and it did suit me better than the artificial Levothyroxine. If you could get a prescription for it I would try it. I actually purchased my own from Thailand but at the moment it is hard to obtain because of the coronavirus.

[Florellina in reply to Lora7again]

Ok thanks. So if my endo agrees, is it available on the NHS, or do I need to then send that off abroad somewhere please? Sorry about this, am a bit unclued up on this as have never had to look into it before. I guess I would need my endo to tell me what amount to take to be an equivalent to what I was on before.

Thank you for your help.

[Hay2016]

A shot in the dark would perhaps be to try thybonn henning the German t3 which is liothyronine hydrochloride rather than sodium. I know one of the pharmacies on thyroid uk site will supply it on an nhs script and post it to you.

[Florellina in reply to Hay2016]

Hi

Thanks so much, but that's one of the ones I can't tolerate now. My endo got me a prescription of that already.

[Hay2016 in reply to Florellina]

Ok. That’s something crossed of the to try list. 😢 Hope you get a solution.

[Florellina in reply to Hay2016]

Thank you, that's kind of you. Me too!

[jimh111]

If levo makes little difference to you try dropping the levo drastically and see how you do with some lio. It's quite possible your heart is converting some levo and becoming thyrotoxic. Also, long term high dose thyroid hormone causes structual and electrical changes to the heart which is why it can lead to atrial fibrillation.

[Florellina]

Ok thanks, that's an interesting suggestion. I will put this to my endo when I speak to him on Wednesday and see what he says. I'm willing to try anything that might help. Thank you

[shaws Administrator]

I am not medically qualified but it is possible that the T3 had some change within it and it may be that is affecting you.

Try taking one anti-histamine tablet one hour before your T3 and see what happens. If the reaction doesn't happen again, then you'd need to look for a different make of T3.

[Florellina]

That’s a good idea, thank you.

[Priscilla17]

SigmaPharm laboratories - brand of T3 is a suggestion. I’ve tried many others with bad reactions but this one is ok for me.

Warm wishes

Priscilla

[Florellina in reply to Priscilla17]

Thanks. I don’t think that’s available on the NHS though now that they have licensed a few companies only. Do you know how I could get hold or this please? Thank you

[Priscilla17 in reply to Florellina]

I know the UK now have a license for 5mcg but not sure about 25 or 50 mcg. I will send you a private message.

[Florellina in reply to Priscilla17]

Thanks so much

[jgelliss]

I'm so sorry your going through tough times .I'm sure it's very concerning / disappointing and frustrating. Did your Dr run labs to see your B-12 /folate ,Vitamin"D"/K2 , Iron /ferritin levels ?Nutrients are very important it helps our thyroid meds work better for us.

Also knowing your FT3 FT4 TSH would be very helpful too.

Best Wishes For Better Days Ahead.

[Florellina]

Hi. Thanks, they are above in reply to grey goose. Not this time re vitamins but historically when I was very bad before T3 was added i took very high b12 supplements and my b12 was high, a b- complex, high dose D3 weekly, selenium, high dose vitamin c, zinc and i still felt awful. Only T3 helped. My iron levels were also good when i had all these symptoms before so this is what makes me think that it probably isn’t the lack/absence of this but lack of t3 which is wreaking havoc.