Heart symptoms following no access to Levothyroxine alternatives due to funding. Any help very much appreciated. Best wishes all. JD 🙏

[Jayne-]

Hypothyroid picked up on bloods .. not symptoms ... 13 years ago .. levothyroxine prescribed small dose to start .. now 125mcg

13 years of many chronic illnesses..

ME began same year LT prescribed.

Since .. Fibromyalgia, adrenal fatigue, vestibular migraine .. v low blood pressure ..

many recurrent infections of mostly sinusitis.. kidney .. bladder .. etc etc

( Just seen Endocrinologist for 1st time, in September who suspected autoimmune too)

In June this year chemist supplied a different prep of LT.. new formulation.

By July I was in a progressively toxic state which culminated in semiconscious episodes.. extreme and constant sweating dizzy, eye, ear disturbance and a head like full of "mud" no cognitive capability. I was totally debilitated.

I read on this forum that LT can be a cause of such toxicity.

I stopped the 125mcg tab in Sept and by day 4 had significantly improved by day 7, I was a diff person.. with clarity and mobility I hadn't had for a very long time!

Unfortunately my practice would not supply any other support for my hypothyroidism .. due to cost!! And despite requests from the Endocrinologist who suggested T3 and pure T4.

I was left 7 weeks with out any support ..

I researched in that time the porcine and bovine preps and finally located some to arrive at the 5 half week stage..

at this same time my heart started to crunch and grip and I experienced breathlessness and sweating in the episodes too.

I was admitted to hospital via ambulance at 6 wks and have spent the last week in and out of ambulances and hospital wards, with increasing tightening, wringing of the chest .. and above symptoms ..

I can now feel and a few times previous, an obstruction in my throat on swallowing too..

at 7 wks post I managed to acquire liquid thyroxine, started to take this 3 days ago and have a little relief on the tightness and crunching heart related symptoms today..

I'd like to ask advice about the move from synthetic T4 to the dessicated or T3 options ( should I get back to some stage of no heart symptoms...) and how to find support to do so.

As I'm concerned I may be toxic to the LT once it starts to settle in my system agsin.

I would really appreciate any help possible and any suitable contacts you may have for the region of Cheshire UK.

Thank you in advance and very best wishes to you all.

Love and blessings

Namaste

JD

[Clutter]

Jayne-,

Why do you assume you have become intolerant to Levothyroxine. You appeared to be tolerating it okay until pharmacist switched you to an alternative make. You should have advised pharmacist of the adverse effects and asked to be switched back to the Levothyroxine make you were taking earlier.

If your heart discomfort and other symptoms are due to undermedication they should resolve once your dose is optimal. It may take a few weeks to optimise dose.

I would see how you do on the liquid thyroxine before you start selfmedicating NDT or T3.

If you want advice on switching to NDT or T3 you will need to post TSH, FT4 and FT3 results and ranges from when you were taking 125mcg Levothyroxine.

[Jayne- in reply to Clutter]

Thanks Clutter I thought I'd replied .. but can't see it here ..

intolerance to LT thoughts are about the symptoms induced 1stly by TEVA

2ndly by migraine response to activas .. which was the previous one for a couple years .. where I'd had debilitating migraines and other symptoms for same period of time ..

I did report TEVA .. and chemist noted she's had other patients with neg reactions too ..

I asked her to source the one pre to activas too to avoid the migraine response, but she had no records..

Thank you for your help.. regards JD

[Clutter in reply to Jayne-]

Jayne_,

The other makes of Levothyroxine available in the UK are Mercury Pharma 25, 50 & 100mcg, and Wockhardt 25mcg.

[SeasideSusie Remembering]

What brand of Levo tablet were you on and what were you changed to? Was the new brand Teva? Lots of people have had problems with that.

[Jayne- in reply to SeasideSusie]

Hi Susie, yes the new brand was TEVA pre brand was activas.

I'm just back from another 3 days in hospital, at the cardiac ward where the cardiologist suspects I went from critical low .

TSH 93 (at 4 weeks post no LT... ) to hyper ?? When LT started 125mcg equivalent.. at 7 weeks post stopping ..

he's reduced the liquid to equivalent of 75mcg and medicated with beta-blocker and stomach acid suppression for heart pounding, sweating and nausea, thankfully now this is on lying down only .. so I've had no sleep now for 3 weeks.. ..

And in that time ..I had extreme tremors in lower body, restlessness, nausea, pounding heart and heart pains with cold sweating etc etc

The TSH on Friday was 9, so that looks promising .. now I'm on lower dose .. of 75mcg..

However the chemist has issued a liquid form of TEVA for my second bottle ... I'm now concerned about that affecting me in the extreme adverse reaction as before in summer ..

the first bottle is a different brand.

Any assistance you're able to offer is much appreciated..

I've been extremely unwell since June when was moved on to TEVA tab.. in oblivion, and in semi conscious states where I thought I may not survive.

Thank you. Namaste JD

[helvella Administrator in reply to Jayne-]

Jayne-,

Teva liquid is an entirely different product to Teva tablet levothyroxine.

Check the Patient Information Leaflets and you'll be able to see quite how different they are.

[Jayne- in reply to helvella]

Thank you Helvella,

Yes I did that yesterday .. and spoke to pharmacist at hospital.. he did show some concern for some of the ing in the TEVA liquid too..

do you have any experience / info, of these ingredients please?

Thank you JD

[helvella Administrator in reply to Jayne-]

Jayne-,

Personally? I didn't like Teva tablets - did something to my stomach.

Never tried any liquid levothyroxine but the only two ingredients I would worry about are glycerol - which is present in quite large quantities and can affect the gut in some people - and Sodium Methyl Parahydroxybenzoate (E219) - who knows about that? I don't. It is a preservative and that is about all I know. This might just be highlighting my ignorance.

[Cheryl25]

Jayne,your dosage seems excessive. I would be bouncing off the ceiling! Try persuading your doc to put you on lesser dose-say 100mL Monday to Saturday and 150 on Sundays. Best Wishes from Cheryl in Bendigo, Australia.

[humanbean in reply to Cheryl25]

Jayne,your dosage seems excessive.

Jayne hasn't mentioned her dose of liquid Levo. And she was taking 125mcg Levo in tablet form which is quite a modest dose - there are plenty of people taking far more. So I'm puzzled about what you think is excessive?