How long does it take muscle and skin symptoms to improve with hypothyroidism

[AS14]

After being stable on 3 days of 125 and 4 days of 100mcg of levothyroxine for some time six months ago it seemed to of stopped working well and my tsh rose quickly from 2 to 3.98 ( within a few weeks) I felt extremely ill, no idea why it started to change, went through all the possible reasons why it could of with my endocrinologist and and couldnt find a reason and I always take my meds one hour before breakfast and my weight is stable . Doctor increased my meds to 5 days of 125 and two at 100 but my tsh continued to get worse and I became more ill . Ten weeks ago my tsh had risen-to 5.96 despite the increase so doctor raised meds again to 7 days at 125mcg and 7 weeks later my tsh was 0.42 and I started feeling the first symptoms of being a little over medicated, palpitations, hot and bothered so it was decided to reduce back to five days of 125 and 100mcg two days again, that was three weeks ago. I still feel very hypo yet have some hyper symptoms too, and other than my appetite improving I still have extremely stiff painful muscles, severe dry skin that itches horribly and feel very sleepy too. These symptoms are normal for me when hypo and normally improve quickly when meds are adjusted and I start feel so much better within a few weeks with a gradual improvement in tsh, very predictable and reliable , totally different to this time. Levothyroxine has always worked well for me, so why it should stop working as well six months ago Ive no idea plus Ive never been in a position where my tsh has changed so dramatically in such a short space of time either.I dont understand why the only thing thats really improved is my appetite yet my muscles and skin feel as painful and uncomfortable and I feel just as sleepy as I did months ago. , I seem to of gone from hypo to nearing hyper so quickly yet still have hypo symptoms plus the first symptoms of being a little hyper at the same time too and not had any of the good part in between. I would of thought that during the 7 weeks my tsh went from 5.96 to 0.42 I would of thought Id of felt the gradual improvement in symptoms as the tsh lowered but thats not happened and I suspect my tsh is still getting lower Im feeling a little over medicated more and more as the days the days go by. My t3 and t4 are always well within range and Ive had a full panel of vitamin and mineral blood tests done and they are all fine. I had a total thyroidectomy 9 years ago . Ive never had any problems with levothyroxine, as I say its only been a good thing for me and so I have no idea whats going on, why would it suddenly start to go wrong and is it even possible to have symptoms of both hypo and hyper at the same time ?. Im lost at what to think or do so any advice would be greatly appreciated. Thanks

[pennyannie]

Hello again AS14

Following on to my answer to you about a year ago, I am still self medicating and much improved taking NDT which contains all the same known thyroid hormones that your thyroid gland supported you with, viz: T1. T2. T3. T4 and calcitonin.

The thyroid is a major gland responsible for full body synchronisation, your physical, mental, emotional, psychological and spiritual wellbeing, and the engine to your inner central heating system and metabolism.

Some people can get by on the inactive T4 thyroid hormone - Levothyroxine alone, some people at some point in time simply stop converting the T4 into T3 which is the active hormone that the body runs on, and some people simply need both these essential thyroid hormones dosed and monitored independently to bring them into balance and to a level of well being acceptable to the patient.

I read that T3 is about 4 times more powerful than T4 and that the average person needs about 50 T3 to function, on a daily basis.

Since you do not have a thyroid you have ' lost ' that small proportion of T3 that your own thyroid would have supported you with - and read of this little bit being about 10 T3, so in a way only replacing with T4 medication can be a bit like leaving you down regulated by about 20% of your overall wellbeing, and this, overtime, is bound to compound health issues.

Personally I just think it makes common sense that if there has been a medical intervention and the thyroid surgically removed or ablated with RAI for Graves, as is my situation, that both these vital thyroid hormones be on the patient's prescription for if and when required to support the patient's wellbeing and health.

I can't remember if you had your thyroid removed because of Graves Disease, but if you did you might like to take a look at the Elaine Moore Graves Disease Foundation website which, along with this amazing site put me on a better course of action, but ultimately this meant I needed to purchase my own thyroid hormone replacement as I failed to got a prescription for T3 on the NHS.

To receive a more detailed, considered opinion you will need to post current TSH, T3, T4, and ferritin, folate, B12 and vitamin D results including the ranges so people better able than me, can advise accordingly.

[greygoose]

It's perfectly possible to have hyper- and hypo-type symptoms at the same time, if only because of the fact that there is not rigid divide between the two. A lot of symptoms can be both hypo/under-medicated and hyper/over-medicated.

Another problem is that the hormone you are taking exogenously, is not distributed fairly amongst all the cells that need it. Some are not getting enough, and others are getting to much - and probably some are not getting any at all. That sorts itself out with time, once you are on the right dose.

I can't help feeling that your doctor didn't change your dose with enough subtilty. Why go back to 5/2 when you'd already tried that and it hadn't worked? Couldn't he have suggested 6 days on 125 and one on 100?

Also, your TSH wasn't even out of range, so it's rather doubtful that you were over-medicated. You're only over-medicated if your FT3 is over-range. But, you said it's always been in-range. I think they only way that you'll get any helpful responses is by posting all your results, with the ranges.

[AS14 in reply to greygoose]

Thank you greygoose

On 27/1/2020 my results were

TSH 5.96 Range 0.3 - 4.5

FT4 17.8 “ “ 10.0 - 22.0

FT3 3.5 “ “ 3.1 -6.8

On 20/3/2020

TSH 0.42

FT 4 18.7

FT3 3.49

I should add that I have hypoparathyroidism (as result of thyroidectomy) and I did have a vitamin D deficiency both of which are well controlled and not causing any issues, been stable for years. My vitamin D on 27/1/2020 was 74 and my calcium was 2.25 both results are perfect for me.

Im afraid I havent got the vitamin and mineral results to hand and given the current circumstances our hospital and gp clinics are closed to non urgent appointments.

My endocrinologist is very good and along with thyroid and these other issues he regularly checks vitamins and minerals and always takes the time to go through the results with me. At the end of January all these results were good.

Thanks

[greygoose in reply to AS14]

Well, the problem is, you don't convert very well, and your FT3 is much too low. It's low T3 that causes symptoms. So, you really need some T3 added to your levo - or a change to NDT. Until you raise your FT3, you are not going to feel well, I'm afraid.

[AS14 in reply to greygoose]

Thanks for getting back to me

I know little about T3 other than its the more activate part and its very difficult to get in the UK, and have always been told its ok so not gave it much thought until you pointed it out -thanks.

Ive kept the majority of the last 5 years of blood tests so Ive compared my recent results with them.

Every blood test for T3 is almost identical every time in those 5 years, between 3.4 and 3.7 never been any higher. T4 is very similar too varying between 17 and 18.5 . The only result that ever changed significantly was the tsh which only happened when I gained or lost weight and was back to my normal 1-2 fairly quickly but even then T3 and T4 remained the same. Ive been at the same weight for a year and a half so it cant have any bearing on my recent results. I was expecting/hoping to see a higher T3 that correlated with the times Ive felt at my best but there isnt, apart from the odd diet related tsh blip the entire 5 years of results look very similar.

At the risk of repeating myself until 6 months ago I was doing ok, I was on a stable level of levothyroxine, absolutely nothing had changed in my life, life was calm and quiet, nothing to explain why it should go wrong. I wish I could find an explanation why after all this time things could go so wrong, something I could fix, it would at least be a starting point, but there just isnt anything. Ive no idea where I go from here.

[greygoose in reply to AS14]

The explanation is that this is not a static disease. It changes. Your need for hormone changes. Your level of T3 is no-longer enough for you, and it's pretty certain that is why you don't feel good anymore. It could be that, for whatever reason, your absorption at a cellular level has changed, and you now absorb less, so need more T3. It's low T3 that causes symptoms. The TSH doesn't make you feel anything, and is a pretty lousy guide to thyroid status. Which is so many hypo people never get well if their doctor doses by the TSH.

[AS14 in reply to greygoose]

Thank you greygoose

I’m going to have to wait to see my endocrinologist, all appointments have been cancelled at the moment.

I’ll see what he has to say about the T3 and maybe he can help with that.

If hes not able to help me do you have suggestions on getting T3 ?. Plus it possible to raise your T3 naturally ?

[greygoose in reply to AS14]

Depends on your definition of 'natural'. If you mean without taking exogenous hormone, then it's doubtful. If you could find the reason for your poor conversion, then your body would convert T4 into T3 automatically, as the body needs it. But, there are so many reasons for poor conversion that it's almost impossible.

Firstly, have you had your vit d, vit B12, folate and ferritin tested? Suboptimal nutrients can cause poor conversion. Especially if it's selenium that is low. You could try taking selenium for a while, see if that makes you feel better.

Are you eating enough calories? You need calories to convert. If you don't ingest enough, or use them all up on over-exercising, then your conversion is going to suffer.

Then there's carbs. Different people need different amounts of carbs to convert well. But, you have to find that by trial and error, there is no blood test that's going to tell you if you're eating enough.

Cortisol. Have you had your cortisol tested? You could get a private 24 hour saliva cortisol tested, see if that's low.

There are plenty of other reasons, too, and it might be a combination of things. Or something that you just have no control over, like having Hashi's. It's a difficult area, so to make it simple, people just take T3 - if they can get it.

[AS14 in reply to greygoose]

Thank you greygoose

I had no idea any of those things could affect my thyroid results but theres somethings that are giving me pause for thought

I had been low on folate a few months before this and I thought it had been rechecked to see if it had improved but come to think of it I think it was possibly one of the few tests that wasn't on the list of blood tests done so I must chase that up soon as possible.

I was on a low carb diet, not calorie restricted just low carb hoping it would prevent me gaining weight.

I said life was all normal and it was but there was a couple of weeks not long before it all started to go wrong that were extremely stressful, horrible family situation that had me really stressed out. It was all sorted and life went back to normal so I kinda just not gave it any more thought . In hindsight it was really bad so wouldnt be surprised if it had caused a problem.

I really thought nothing in my life had changed and if you had told me I would would never be any the wiser so thank you very much.

Its bad enough feeling ill but so frustrating when what was working well seems to just stop working with no obvious reason but now I know better.

Thank you very much

[greygoose in reply to AS14]

You're welcome.

[Batty1 in reply to AS14]

If your endo is very good ask for some T3.

[HLAB35 in reply to AS14]

Greygoose has summed this up perfectly and it's to do with conversion..

In January you had a middling T4 and a very low T3.

After the increase in March you have an increase in T4 (which one would expect on a higher dose of Levo) BUT your T3 has remained at the same very low level. The excess T4 cannot be converting to Free T3 looking at these results, so my guess is that it could well be converting to excess RT3 which is the last thing you want and why, on the higher dose you actually feel worse.

There are two possible ways out of this... (1) take some t3 or switch to NDT or (2)* look at sorting out your adrenals with vitamin C, b vitamins like b5 and p5p and minerals like Magnesium and Zinc. Basically, poorly adrenals prevent proper T4 conversion. Serum mineral tests for things like Magnesium are useless, so if the doctor says your minerals are 'fine' from a basic serum test then they're judging the wrong thing - they need to do RBC checks which are the gold standard for mineral checks. Also, (3) be open to discuss your vitamin levels, as I expect that your 'in range' results may not be optimal.

*If, the problem is that you have a genetic issue (this needs to be proven with a blood test) with conversion then it may well be that for you only t3 will do.

[greygoose in reply to HLAB35]

The excess T4 cannot be converting to Free T3 looking at these results, so my guess is that it could well be converting to excess RT3 which is the last thing you want and why, on the higher dose you actually feel worse.

Actually, rT3 doesn't make you feel anything, because it is inert. It's the low T3 that is making her feel bad. With her present level of FT4, I doubt it is converting to excess rT3, anyway. But with a higher dose it probably would, meaning that her FT3 could actually drop.

[Batty1 in reply to greygoose]

Lol....endos do love to swap your same prescriptions back and fourth like we won't notice that it's the same script....Endos like this need to be canned.

[greygoose in reply to Batty1]

Agreed. And, if he can't see the poor conversion for himself, then he really isn't a very good endo. He might be a nice, kind, considerate man, but he doesn't know much about thyroid.

[Batty1 in reply to greygoose]

I don't think doctors care about conversion , it's those lab ranges they love so much....thyroid treatment really needs and over haul.

[greygoose in reply to Batty1]

It's the education of doctors that needs an over-haul. I don't know how they can bear being so ignorant! If I were a barmaid and didn't know how to make a gin sling, I'd pretty soon learn! Otherwise I wouldn't be doing my job properly, and I'd hate that.

[SlowDragon Administrator]

Do you always get same brand of levothyroxine?

Many people find different brands are not interchangeable

Common when adequately treated for a TSH to be extremely low, or undetectable. As long as Ft3 was not over range it’s unlikely you were over medicated

It can take a few weeks to settle when initially increase dose

[AS14 in reply to SlowDragon]

Thank you for your reply

Yes I always get the same brand and take it one hour before breakfast

[Batty1]

Try splitting your dose instead of taking at one time and do you take other meds?

[AS14]

Thank you for your reply

Ive always taken my meds an hour before breakfast and other meds are taken in the afternoon well away from my levothyroxine. Ive been doing this for 9 years and not had a problem like this until 6 months ago. No no meds or any other changes in my life to explain this