Hypothyroid and remedies

[Jez-benign]

Just sharing for information. I've had what appears to be benign mild MS for 20 years and lived with fatigue ever since. 3 years ago after a year of much more severe fatigue (and very low mood) I was diagnosed hypothyroid and put on Levothyroxine. Within weeks energy began to return and my mood improved significantly. Eventually when I got up to a T4 of 21 my energy returned to normal (MS normal) but then I started getting horrible foot spasms which I've never had before. 

 

NHS consultant was friendly and totally unhelpful so I'm using a private endocrinologist. He's prescribed T3 which immediately got rid of the spasms but reduced the T4 back to 15 and huge fatigue. He also tried LDN which I hated, increased Spasticity and so I came off that. Currently trying to increase the Levo while keeping on the T3 but I'm still dead. 

 

Interested to know if anyone else has been down this route? 

 

Jez (I'm in the UK) 

[Marina]

It can be really difficult to tell the wood from the trees when it comes to MS and hypothyroid symptoms. Could the foot spasms be MS and just coincidence that they started when your thyroid dosages were increased? It can also take ages of trial and error in trying to find your "sweet spot" when it comes to the dosage.

 

Might your endo be open and accommodating? I only ask in case NDT (Natural Desiccated Thyroid) might be better suited to you. It contains both T4 and T3 in natural form. Some people who haven’t got on with Levo, have found NDT better. But, it can be difficult at times to source it or to find a doctor willing to prescribe it in the UK.

 

If you haven’t already looked into it and if you think NDT might be of interest, maybe one of these two (possibly "unconventional") sites might offer some insight or help?

 

TPAUK

WWW.TPAUK.COM

 

Stop the Thyroid Madness™ - Hypothyroidism and thyroid mistreatment

STOPTHETHYROIDMADNESS.COM

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Thyroid mistreatment using T4 medicine, hashimoto's disease and hypothyroidism misdiagnosis are too common. Find out the truth about this ongoing scandal.

 

Re LDN, an increase in spasticity is a known side effect for some people when they first start using it, it usually wears off after a while. Did you try lowering the dose to see if it made any difference?

 

[Jez-benign]

Thanks for responding, yes getting thyroxine right is a long process. I've never had foot spasms before they only started with levothyroxine. And yes he's suggested NDT as the next step if we can't get it right with synthetic thyroxine. It's a long slog of exhaustion isn't it. 

[Marina]

Ah, sounds like you've fallen onto a rare endo who's OK with NDT! They are few and far between. Getting there is indeed a long slog of exhaustion. Sometimes, some people up and lower their NDT doses from time to time, too, depending on symptoms.

 

It's worth a shot giving NDT a go, even if it's a slow process of upping the dose by half a grain every few weeks till you reach what might be optimal for you. I know that a lot of people felt much better when they switched to NDT from Levo.

 

As for the foot spasms, I guess only time will tell. If they one day come back for no apparent reason, then it might be that it's a newer MS symptom for you.

 

Let us know, please, how you get on with the NDT if you go that route?