New to medication- legs feel strange (T3)

Hello, I have recently gone to a private consultant regarding hormones, to be told my thyroid isn't great and needs treatment. Age 54, my results are TSH 3.82. (0.27-4.2). FT4 14.2. (12-22). FT3. 4.5. (3.1-6.8). My dr likes TSH below 1.5

Also had hormone tests and had my hrt replaced for bio identical hormones which I have started each a week apart. The latest thing to be added in is the thyroid meds.

I started Levo 50 thirteen days ago followed by 0.025 cynomel 5 days ago.

I have weird feeling in legs think only since start of T3, not actually painful but kind of heavy, restricted almost in calves, had to keep moving legs while sat watching tv.

Is this normal ? Is it likely to wear off as a side effect? Or should I stop taking the T3? If I stop how will that effect sorting out my thyroid?

Thank you.

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What amount of t3 are you taking? Is it 25mcg full tablet or a quarter size?

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I think It is cynomel 0,025 mcg on packaging , I take one tablet in morning with Levo

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This is far to much. T3 is very powerful and you want to only use a small intro dose. The normal start dose is 6.25 or a quarter size. I prefer to go down to 1/8th size, so 3mcg. You need a Stanley blade for this.

Pick a dose and see how you get on for a week on it and then add another same size dose and see how that goes for another week

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Thank you. It's a bit confusing as it says 0,025 mcg not 25 mcg on pack?

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I have never seen such a small size t3 tablet. Has it been especially made for you? What is the brand and where in the world are you?

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It is French and it is exactly as on the packet. 0,025mg. Not mcg

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Sampydoodle,

Please check whether the dose is 0.025mg (milligrams) or 0.025mcg (micrograms).

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Clutter,

The pack will say 0,025 mg (French use of comma as decimal). Which is 25 micrograms. The UK is fairly insistent in avoiding use of decimals in important measurements. (By which I mean, numbers that need a zero before, or leading zeroes after, the decimal point.) That is not true everywhere.

This is possibly the pack referred to:

dropbox.com/s/cyvcggybrmuw0...

(Given the difficult Mercury Pharma appear to have in reliably and consistently getting 25 micrograms of active ingredient into their tablets, I fervently hope they are not expected to make anything with a dose of 0.025 micrograms! :-) )

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Helvella,

I asked Sampydoodle for clarification because s/he said the dose was 0,025mcg not 0,025mg.

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Using t3 could be likened to first trying wine. You would have a glass and feel some nice effects, but if you have the full bottle you get the negative stuff as the body is not used to it

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If it is too much will it have been harmful? Should I leave it a couple of days now?

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My mistake it it 0.025 mg

I'm in uk, it Sanofi Cynomel

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Which is 25mcg and is a massive dose to start on - far too much. That consultant obviously knows as much about thyroid as the average UK doctor. Mad, bad and dangerous! He has started you straight on to the total equivalent of 150 mcg Levo. Please stop taking the t3 immediately.

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I'm quite worried now!!!! I think I maybe had 3or 4 tablets this week! What should I do apart from stopping them?

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Hi - that is too much too quickly and will be causing problems. It takes at 7-10 days to have any effect from Levo and least 4 weeks, sometimes 6 , for the body to make full use of it. So your body is only starting to fell any effect now. You should not have added t3 as well at this stage, whoever told you to was wrong. Dose should also be raised by a maximum of 25mcg of Levo every 6-8 weeks. This is to avoid shocking your body. Also t3 is a hard taskmaster that can be really quite unhelpful unless all nutrients are optimum in advance of taking it.

I would be inclined to stop the t3, wait till you have been on the Levo 6 weeks then have another blood test and adjust accordingly.

Gillian

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Ok I'll stop taking it but what do I do about the weird sensation in my legs? Will it go away on its own or do I need to see a Dr? Am I likely to get any other problems?

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Will more than likely go away on its own over the next few days. Stopping the t3 should head off any other problems associated with that. You may still feel some odd effects just from the Levo but they should ease off within a couple of weeks as your body adapts. Some very sensitive souls do have to raise doses very slowly by very small amounts but the majority are fine with 25 mcg Levo every 6-8 weeks.

If you are concerned about anything else then come back to the forum and ask. I would certainly be wary of that doctor and his advice in future, but I am afraid that sort of bad management is extremely common.

Gillian

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I would find out the actual size from the doc. Normal sizes are 25mcg so your size may be in mg, hence it is 0.025.

I am pretty sure this is the case. So just cut it up to the smaller size you are happy with and see how it goes for a week.

If you read dr Blanchard book on thyroid function (Amazon) he explains t3 has always been made in this very large size and it is sort of a guesstimate on the manufacturers side why it is this size. He says ideally t3 should be made in 1mcg size tablets.

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Okay... I’m not going to get too into what dose of T3 to start on, as I’m not medical at all, except to say, Sampydoodle...

1) I started on 30mcg Tertroxin (T3) along with 75mcg Oroxine (T4) as one of the various experiments my endo has tried on me... and my head did not blow off. In fact T3 was enormously helpful for me in dramatically reducing brain-fog and depression. Eventually I went to T3-only under the guidance if my endocrinologist dosing 60 then 80 mcg a day. We are all different, trying different methods and it’s tempting to think the method that works for you, will work for everyone. Unfortunately not.

2) When you say private consultant I’m guessing that’s a medical consultant...? Why not check with your doctor if weird feeling legs is a side-effect of T3, or if it is something else altogether. And..,

3) Yes, with Hashimoto’s I feel like my legs have been filled with concrete, my calves are shrunk and aching all the time, and my Archilles tendon drawn permanently tight.

Yes, for me, weird feeling legs is a symptom of poorly treated Hashimoto’s.

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I don't mean to intrude on this conversation, however, it is the first time, that I have noted, anyone else bring up a bizarre symptom, that is concerning me too.

Having seen Dr P and starting adrenavive11 125mg, (whilst reducing levothyroxine from 75mcg to 50 mcg), I adjusted fairly well. I was later advised, take 250mg adrenavive,11, I did so, but after a few days, I suffered heart palpitations and pins and needles in my hands. I cut back to 125 mg adrenavive11 and after a week, I was advised, to add metavive11 30mg, stopping levothyroxine. I settled a week or two, then I got increasing hypo symptoms.

I spoke with Dr P. Advised to take 60mg metavive11 and 250 mg adrenavive 11. I soon dropped back to 125mg adrenavive as palpitations and tremors, plus high BP, indicated too much again.

I have settled on adrenavive 125mg and metavive 60mg for about 6 weeks now. However, on a few occasions, I have had to leave days out, to return home, (to raise my legs), due to a feeling of inability to walk. I get a very heavy, lead like, concrete like feeling, from calves to feet. First time, was very, very disconcerting. Each step, felt concrete heavy, numb, and unmanageable.

I phoned my rheumatologist (I was also diagnosed Sjogrens syndrome last year), he believes problem coming from lower back. I do suffer with back pain, so seemed plausible, though, not had symptoms before.

I have bought the next size trousers, tights, underwear (in case my legs were swelling), yet, I have still experienced the feeling. I can now describe it as like a tight drum skin. Heavy, taught, leaden... And, just like Blue Bee experienced, I get the tightness (most of the time), from Achillies tendon (plus a lump, along Achilles line, both legs).

Does anyone, know what adrenavive or metavive contain? Also, is it likely to be due to increase 60mg metavive? If so, I am going to struggle. Fatigue etc was a real issue on 30mg.

I have, at long last, after 3 years of asking, been referred to endocrinologist. However there is a ten week plus wait! I am hopeful someone can help here.

Any help would be appreciated.

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Hi - your post and question have been lost in among answers to someone else. Whilst they may have a similar symptom to yourself, piggy-backing on their post with a question about your case is unlikely to be effective. It also causes confusion. It would be much better if you were to start your own post instead. You can copy and paste your text.

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I agree with Blue_Bee regarding T3, and when it was added to my mono T4 at 20mcg, there was absolutely no shock to my system, sudden or gradual - I simply began to feel better over time. I know of many who've had a similar experience.

However, Sampydoodle, what I think IS problematic for you, is that in a very short space of time your HRT was swapped for bioidentical hormones, you began T4, and then you began T3, which, in totality, is an (unecessary) large number of changes for to your system to process. Plus, in practical terms, you (and your Dr) can have no idea which of the three changes might be causing any resultant side-effects or benefits ... I'm with Seaside Susie, I'd suggest going with T4 only for now, and only later add in T3 as results indicate.

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Sampydoodle

I can't understand why you have been started on T3 at all.

With these results

TSH 3.82. (0.27-4.2)

FT4 14.2. (12-22)

FT3. 4.5. (3.1-6.8)

And only just started on 50mcg Levo, then 13 days later add in 25mcg T3 is madness.

You should be on 50mcg levo for 6 weeks then retest to see where your levels then lie. Increases of levo by 25mcg every 6 weeks after testing until TSH is down to about 1.

Once TSH is 1 you can see how well you convert T4 to T3, and if conversion is poor then add in T3 starting with 6.25mcg.

There is absolutely nothing in your results that suggest you need T3 at all at this stage, and by taking it when you don't need it can do more harm than good.

Did you have any vitamins and minerals tested? Low levels can have the same symptoms as hypothyroidism. Essential to test

Vit D

B12

Folate

Ferritin

Is this 'consultant' an endocrinologist who has or does also work within the NHS or a 'practitioner' of some kind? I used a 'practitioner' to interpret my sex hormone test results, and from the medical history I had to give she took it upon herself to advise about my thyroid meds, suffice to say she was completely barking up the wrong tree. I very quickly ditched her!

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Sampydoodle, do not worry you have not taken a dangerous dose that will cause you any harm. Just that it gives the body quite a shock to go straight onto T3. Different people have very different reactions. Some can hardly tolerate it at all.

I think Marsaday's analogy with wine is quite good. If you're used to drinking wine most days, this is the equivalent of giving your usual quantity to someone who's never had alcohol before. Not too harmful but will give them a shock. If you've had any symptoms since starting these will be part of that shock. It should all go away quite quickly when you cut back.

Although I also agree that your blood tests don't show you have a burning need for T3, I actually believe most people on thyroid replacement are better off on a mixture of Levothyroxine and T3. It's much easier on the body. So I'd hold onto it if you can, but take the advice to get hold of a razorblade and start on a quarter or third of a tablet.

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I guess the questions remain Sampydoodle... is that private consultant a medical practitioner, an endocrinologist, and are they any good? And are your heavy legs a symptom of under-treated Hashimoto’s, or over-treatment with T3, or something else? And do you want to self-medicate with lots of support from fellow-sufferers here, and/or under the guidance of a good GP and endocrinologist... with lots of support from the wonderful people here?

If you are new to medication then perhaps you’ve only just been diagnosed with Hypothyroidism or Hashimoto’s? If that’s the case, then — as Seasidesusie says above — you will need to trial a series of meds, each for a period of 6-8 weeks at a time if Thyroxine (T4) is part of that regime. This is because it takes that long for your body to adjust to the new dose of T4. Then you are tested and based on your bloods and your SYMPTOMS (if your doctor is any good) your dose or mix of meds is adjusted and you try again. It can be a long and at times frustrating process, but is worth it, once the meds are right. That’s according to the success stories I’ve read on this wonderful site. I’m still trialling med combos at 18 months since diagnosis, but getting better gradually with each meds adjustment (along with vitamin supplements and lifestyle changes, just as Susieseaside suggests).

Generally people are started off on the standard T4 only treatment and if that works for you then you are in the fortunate 80-90% of sufferers for whom T4 alone is the answer. Keep in mind, this site is formed by the unfortunate 10-20% of people for whom standard T4 treatment does NOT work. Or they can’t get the right dose of T4 because their doctors are using the TSH test alone to guide dosing (that was my initial experience :-(

***T4 is easy to get on prescription locally and is affordable. I think that’s why there is some concern expressed here about going straight onto a T3 mix, when maybe the right dose of T4 alone could be the answer for you.***

I know, it’s a lot of information and we are all different; there is no one standard treatment unfortunately. That said, welcome! You’ve found a compassionate site full of experienced , knowledgeable fellow-sufferers and some amazingly generous success cases who stay around to encourage us newbies. Read broadly and try out the search function under the “Other” tab.. I think it is, can’t check right now. So back to my first question..,

Do you have a good medical doctor?

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Massive thank you to everyone, I feel reassured by your comments, I have to say I had got quite scared by the thought of overdosing on the meds! I'm not even sure if I should be on any thyroid medication at all as I think everything was in range, tho I know only too well that that isn't the complete picture in medicine.

Looking at symptom list for hypo I do have problems with most of the things , fatigue, weight gain, tiredness, joint pains, constipation, memory problems, dry hair/nails, hair loss, feeling low, lack of motivation, temperatures irregularities etc but I suppose I put a lot of it down to being told I was peri menopausal 4 yrs ago as well as deficient in b12, vit d, iron, folate, . I was put onto standard hrt, as well as treating the other deficiencies, I also now inject with b12 as I found that to be helpful initially. Over the four years I had some improvements but the tiredness, low mood, increase in migraine to weekly, increasing joint problems which they say may be inflammatory but couldn't pinpoint exactly which type, unexplained weight gain ( I was exercising 3-4 times a week) etc got me wondering. My trainer at the gym couldn't understand my weight gain after closely monitoring my food intake and exercise and suggested it might be hormone related.

This was when I contacted Harpal Clinic for a hormone consultation. I was told my hrt was incorrect, that I had unopposed oestrogen, next to no progesterone and testosterone, very low dhea and also that my thyroid wasn't good.

So my hormone treatments have begun and I have to say I am seeing improvement in mood/ motivation, don't think I'm so tired either but unsure whether I need thyroid meds. Maybe I will continue with the levo to see if there is any difference.

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