Hypothyroid with MS

[LevoLover]

No question, but an introduction and interested in other peoples’ experience. I’ve been hypothyroid for seven years and benign MS for 20 years. Thankfully, just a limp and no progression.

The link between the two conditions is that MS gives me fatigue and muscle spasticity. Hypothyroid on top of that gives me colossal fatigue. And levothyroxine tablets exacerbate the spasticity so I am very atuned to any changes in fatigue or muscle cramps.

Even just a slight change in dosage leaves me unable to leave the sofa for three weeks. Anyone else with MS and hypo thyroid?

[Bertwills]

Hello, I’m sorry to hear about your 2 conditions, it must be hard to manage them both. Can you tell us a bit more about how you do that? How much levothyroxine are you taking? Who prescribes it? Do you do any private ie non NHS testing? Do you have any blood tests results to show us? We might be able to pin point why you feel such awful fatigue.

I have severe fibromyalgia & hypothyroidism so I’m familiar with muscle pain & fatigue too. I have found LDN helpful, have you tried it?

[LevoLover in reply to Bertwills]

I’m currently on 75 µg levothyroxine daily. Last blood test 05/04/2024 was TSH 1.19 (range 0.27-4.2), T4 21.8 (range 11-22). I’ve been under an NHS endocrinologist for the last 18 months but on most recent blood test the endocrinologist said that’s fine You’re okay now, and referred me back to the GP. Personally I think it might still be a little bit high but this is the least fatigue I’ve had for the last three years as long as I don’t change the dose. (Changing dose always results in three weeks of ridiculous fatigue).

A couple of years ago, I used a private endocrinologist for 12 months, cost over £1000 and I don’t think he did me any good at all. In fact by the time I left him I was on 110 µg levothyroxine plus 10 µg T3. This is the equivalent of 140/150 levothyroxine i.e. twice what I’m currently on. He also tried me on LDN which was horrible and NDT. I lost trust in him and given the over medication I think I was right.

The huge fatigue is simply because of the combination of MS fatigue, which is considerable but manageable, plus the additional fatigue from under or overactive thyroid depending on medication.

[Bertwills in reply to LevoLover]

Have you ever had a T3 test? Hopefully since you were prescribed it you have. Your most recent test shows high T4 but no T3 result so we don’t know how well you convert. It’s quite possible that your high T4 isn’t doing you much good if it’s not converting to the active T3.

The dose of 100mcg of T4 & 10 of T3 that you previously took isn’t a particularly high dose at all. Without blood test results you can’t know if you were over medicated or not. It might not have suited you but you would have seen that with over range blood test results. Do you have them from that time?

I’m surprised that you found LDN horrible! In what way didn’t it suit you? Did you start very slowly & take 3 months to reach 4.5?