Alternatives to Levothyroxine?

[FIT2018]

If I want to get off levothyroxine for a while, to see if this helps my hearing issues, what is the most credible, UK available, GP prescribeable alternative? Any recommendations? And why that would be better?

Thanks in advance 👍

[shaws Administrator]

As far as I know all doctors in the UK have been told that only levothyroxine is to be prescribed. The medical profession ignore the fact that some of us hypothyroid patients don't improve on levothyroxine. At one time they prescribed NDT or T3. Misinformation about NDTs have been published by the British Thyroid Association and RCoP but one of our Advisers wrote to them (I shall give link below) and despite requesting a response for three years they never did and Dr L died through an accident. Dr L was adament against the way we are diagnosed and he'd never prescribe levothyroxine - only NDT or T3.

You'd have to source your own alternative and to do so, you'd have to put up a fresh post asking where to source them as no info is permitted on the forum of where to source prescription thyroid hormones.

There is 'natural dessicated thyroid hormones' (NDT for short) and was the very original in use in various forms since 1892. Before that we died an awful death. It was withdrawn. T3 was also prescribed - now withdrawn. So we are limited to levothyroxine alone. Sometimes a change of brand might work wonders if it is the fillers/binders in the present one which is affecting us.

NDT used to be the only replacement up until the introduction of blood tests and levothyroxine which our Adviser also stated was due to corruption and doctors paid to prescribe levo only when first being issued. (in USA). So instead of us being diagnosed due to our clinical symptoms alone (no blood tests then) we were given a trial of NDT. If we improved we were hypo.

Levo is an inactive hormone. It has to convert to T3. T3 being the only active thyroid hormone needed in our millions of T3 receptor cells.

NDT (being made from animals' glands' contains T3, T4, T2, T and calcitonin and there are several makes.

T3 (liothryonine) can also be sourced other than in the UK. and adding some to a reduced T4 works for many people.

[FIT2018 in reply to shaws]

Hello shaws,

Thanks for such a detailed and informative response, I really appreciate it.

I am suspicious about Levo as my hearing/balance/vertigo/tinnitus problems all started at the same time I started taking it 15 years ago... and every doctor and specialist (ENT etc -even a recent audiologist) denies vehemently any connection with Levo.... Hmmm.....

I am actively doing everything I can to deal with the hypothyroid side of things, after much detailed and helpful advice received here from some very kind and informed folk.......but I still have a nagging suspicion that Levothyroxine itself, is at the heart of these symptoms. I am improving as I get to grips with diet, vitamin supplementation, dosage, lifestyle changes etc... but just my instincts are screaming at me to try something other than actual Levothyroxine as my primary medication for Hypo.

I will have a think about all this and am grateful to you to get more info about Levo/GP prescription background. It all sounds a bit dodgy and dpressingly familiar/makes sense.

If I have to self medicate, at least I will know better now how to go about this.

On that subject: I understand and totally respect the official position regarding posting on the forum - If I do need this type of info however, can this be messaged privately off of a post in some way, without breaching forum rules?

Many thanks again

[shaws Administrator in reply to FIT2018]

I wholeheartedly agree with you:-

"(ENT etc -even a recent audiologist) denies vehemently any connection with Levo.... Hmmm.....")

I had very severe palps with levo. I had to call ambulance many times. From work as well. During the night and when Abroad. On the bus or train heart surged and I didn't have a clue what was going on. Neither did a panicked husband. Neither did doctors as it had usually calmed somewhat when I reached hospital.

I had many ECGs and investigations - all were fine. I had overnight monitors etc. At the last consultation with Cardiologist he was thinking of putting something in heart to record (cannot remember proper name). I never had to have it done as I happened to switch over to T3 and lo and behold I've had no palps since.

I am not saying this happens to everyone but it is worth a try. I am assuming that some have a sensitivity to levothyroxine which is synthetic and has to convert to T3. With T3 it goes directly into our T3 receptor cells, so my guess it is that made me recover and resolved clinical symptoms.

If in the UK they will not prescribe T3 like they used to do so many source their own. It is too expensive for some unknown reason in the UK.

[FIT2018 in reply to shaws]

Actually, that's also interesting (sorry you had to suffer to give me this insight!) - I also have had that effect palpitations) - but it seems to accompany what I have called "head rushes" over the years, which seem to increase my heart rate. and with pulsatile tinnitus, that is very easy to monitor!

As the "rush" takes hold, my heart hammers away + my ears close up as if I have been plunged to depth underwater.. On my "bad" days for hearing loss, this feeling of being underwater just stays.... for hours.... and I can hear nothing but the loud beating of my heart and white noise. Real fun.

I also get nose bleeds quite easily, which I have also attributed to the "pressurising" I experience.

I remain convinced that if I hadn't kept myself fit all these years... well who knows.

I think I need to consider my options now and follow my instincts which are usually not wrong

[Spareribs in reply to FIT2018]

Have you had B12 checked? also folate, iron/ferritin & Vitamin D for starters - thyroid hormone needs adequate vitamins/minerals to use, tinnitus can be a symptom of low B12 too.

Edit - I see from your previous post you are now supplementing B12 & VitD

[Peanut31 in reply to shaws]

shaws

Brilliant and detailed explanation.

Best wishes

Peanut31

[FIT2018 in reply to Peanut31]

Agreed

[SlowDragon Administrator]

Even the NHS acknowledges that 10% don't do well on just Levo and may benefit from addition of small dose of T3. But as they don't test FT3, often refuse to refer patients to an endocrinologist and current price of T3 means it's extremely difficult (but not impossible) to get T3 prescribed on NHS (cost to NHS approx £950 for 100 tablets 20mcg)

Alternatively a private prescription for T3 means can access EU sourced T3 at reasonable cost (31 Euro for 100 tablets 20mcg)

please email Dionne at

[e-mail]. For list of recommended thyroid specialists, some are T3 or NDT friendly

Professor Toft recent article saying, T3 may be necessary for many

rcpe.ac.uk/sites/default/fi...

bbc.co.uk/news/business-420...

[FIT2018 in reply to SlowDragon]

Thanks for that - I will follow that up. I am exploring the possibility that Levothyroxine itself as medication for Hypo is causing the symptoms I have been suffering from. I know I shouldn't try too much too soon (as I have already done!) So I suppose I do need to talk to an enlightened endo before I make any decisions - will get the list. Obvious question: Can my/will my GP refer me to a specific endo or is it private only if you insist on one particular specialist?

[FIT2018 in reply to SlowDragon]

Just checked.. got the list already

[FIT2018 in reply to SlowDragon]

That BBC article just makes me want to throw stuff around. We are so lucky to have the NHS, but it is mismanaged to an epic degree. I have to work with the DVSA a lot and you see some jaw dropping stuff going on there as well. As soon as you take market pressures off a business, it loses the plot.

Has any progress been made to sort this out? I see T3 for sale on line in Europe for a fraction of the price you quoted.

[SlowDragon Administrator in reply to FIT2018]

New legislation passed into statute last summer .....still not gone live .... apparently due in July 2018

C&MA investigating and may take to court

gov.uk/government/news/drug...

Two new NHS suppliers only a £ or so cheaper

Recent debate in House of Commons

theyworkforyou.com/debates/...

[shaws Administrator in reply to SlowDragon]

SlowDragon - should it be C&MA i"nvestigating" ?