T3 lactose free meds, 5 days off them, weird

[birkie]

Hi everyone ❤️

Well I started on my next monthly T3 lactose free tablets about 3wks ago, 3 days in I started with lactose symptoms, I persisted only becoming so bad I came off them and within 2/3days all the nasty bowle/stomach problems went, I then went back on them and all the lactose symptoms returned, I came off them again as the pain in the bowles ect was to much... I've now been without my T3 meds for 5 days and I feel so much better but I've also noticed some other symptoms have gone, mainly the shaking and sweating, palpitations, also the very bad headache and the jittery feeling,sicky feeling to, I feel much carmer, my internal body shaking has nearly gone🤔... First I must say I started on T3 around a year ago.. It was around that time my calcium and pth shot up over range, nhs endo wrote saying I probably had primary hyperparathyroidism, but because of covid I never saw an endo face to face, all blood tests, scans, ect were pointing to this diagnosis but for some reason the NHS endo discharged me from their clinic because I got one blood test back normal, anyway I have now got a firm diagnosis of this condition and are seeing the endocrinologist at Hexham, but in the confusion of primary hyperparathyroidism symptoms and me having no thyroid and being put on t3(lactose free around the same time I'm now wondering if I've misunderstood the shaking, palpitations, bad headache, sweating ect, we're not part of primary hyperparathyroidism (I am still urinating a lot and still very thirsty with bad joint pains, they are definitely primary hyperparathyroidism symptoms,) so 1,my bowles/stomach pain ect has gone

2,my sweating profusely, shaking(tremors) as gone

3,palpitations, jittery feeling as gone

4, server bad headache as diminished (head feels more clear)

My Last blood tests were... T3 5.9.....TSH....0.80...no T4.... My T3 dose is 25mg split 3 times in the day,

So I'm totally confused as what to do now🤷‍♀️.... I'm back out of bed and moving about my flat even cleaned my kitchen worktops down yesterday and popped in to my local town to ask the pharmacy staff about what's happened to me after going on this next script, ( lactose symptoms) I'm up today but groggy as I went on the loo around 7 times last night 😭... Have a slight dull headache but nothing to bad, so..... Could it be I'm on too high a dose of T3?? That would explain the hyper symptoms, (but not the bowles /stomach problems) these T3 tablets do appear to be the teva lactose free 20mg.. But I also noticed a really bad after taste with these ones really horrid especially in the morning 🤢, (never had this problem before) Can anyone tell me how long it will take me being off my T3 before it starts to affect me (going hypo) I've opened another bottle of T3 I was thinking of trying them to see if they are different.. I'm just totally at a loss... 😭😭

Sorry for the long post🤦‍♀️❤️❤️❤️

[Jazzw]

Birkie, there have been other posts about Teva T3 upsetting people’s innards in the last year or so. I’ve looked at the excipients and can’t see why on earth it should (it’s not like there’s acacia powder or any of the usual irritating suspects in there). There’s Microcrystalline cellulose, Maize starch, Pregelatinised starch, Silica and colloidal anhydrous Magnesium stearate. Apparently. And yet a few people have posted that it upsets them.

Maybe complete a yellow card to report the side effects?

As for when you’ll start to miss the T3–soon, I’d say. Within a week.

[helvella Administrator Thyroid UK in reply to Jazzw]

I encourage everyone to report ALL side effects and bad experiences with ALL medicines including vaccines and diagnostic testing kits. In the UK, use the Yellow Card reporting system to inform the MHRA about any medicine issue you experience - or even suspect.

If in doubt, shout!

This post says more.

🟨 Making Yellow Card Reports 🟨

healthunlocked.com/thyroidu...

There are other routes outside the UK. For example the USA's FDA has a reporting mechanism. Within the EU, the European Medicines Agency handles reports for centrally licensed products - each country handles its own for nationally licensed products.

[birkie in reply to helvella]

Hi helvella❤️Yes it seems strange but I've not suffered with bowle/stomach problems on this T3.. (teva lactose free) only this new script I picked up 3 weeks ago.. but now I'm off it am amazed how those horrid symptoms I associate with primary hyperparathyroidism have gone and how much better I feel, my head has never been clearer, I don't feel jittery, exhausted, have any palpitations, sweating (the last few days have been heaven for that) as I usually sweat constantly, shake too and feel like I can't consentrate on anything, I'm much carmer🙂.. Of course my primary hyperparathyroidism symptoms continue and will.. Until I see the endo team, but at the moment I feelki great... 👍

[helvella Administrator Thyroid UK in reply to birkie]

A Yellow Card report might help alert to something like a different supplier of an ingredient - active or excipient.

I often can't see what on earth could be causing an issue. and the reasons can prove to be subtle.

[birkie in reply to Jazzw]

Hi jazzw❤️As I said I've been on T3 lactose free for a year, had no bowle/stomach problems until this next script, but all the other symptoms I mentioned which I thought was linked to primary hyperparathyroidism, sweating, tremor, ect have gone🤷‍♀️.. Which is making me think is 25mg to much for me?... Or dose T3 just not agree with me?.. Having a define diagnosis of primary hyperparathyroidism is not helping matters symptom wise as some can cross over, I will say my last bloods I had done at the beginning of June for calcium and pth, my gp sneaked in a thyroid blood test in and didn't tell me I'd taken my morning T3, 10mg and afternoon T3 10mg.. My results were.. T3(11.3)....TSH (0.04) no T4.... Of course my gp lost it saying I was over medicating, I then told him I'd taken my 2 doses of thyroid hormone that day🤦‍♀️ I had it done again and it was T3... 5.9....TSH... 0.80..no T4.... Yes I'm getting worried not being on the T3, but when I start getting the lactose symptoms (after around 2/3days if I continue on them they just come right through me, or I vomit them back, so they probably wouldn't be in my system long enough to absorb 🤷‍♀️... Same thing happened with the anti thyroid meds they put me on.. Turned out they contained lactose.. So I wasn't absorbing them then I went into thyroid storm 🤦‍♀️

[Jazzw in reply to birkie]

Oh Birkie, why is nothing ever straightforward eh? I’m so sorry. x

I think it’s still possible you’ve got a bad batch though. Which is why I (and Helvella) suggested putting in a yellow card report.

Does the new bottle you’ve just opened have the same batch number/expiry date? If it does, then it’ll probably have the same effects. If it doesn’t, then I guess it would be worth a try…

If it turns out to be the case that it’s just too much T3, then I guess you could try a lower dose? Not sure what else to suggest. It is indeed very interesting that your HyperPara symptoms have disappeared—does make you wonder, doesn’t it?

[birkie in reply to Jazzw]

Hi jazzw❤️My hyperparathyroidism symptoms haven't disappeared, I'm still going on the loo loads, drinking like I'm in a desert have bad joint pains, the symptoms that have gone are, sweating, tremor, bad headache, jittery, palpitations, exshastion,.. because my bloods were in range for T3, TSH I disregarded them as being part of the T3 meds, so put them in the primary hyperparathyroidism category, some symptoms do crossover, you can get a rapid heartbeat, tiredness, some sweating ect with it, but it's strange these symptoms have gone after coming of the T3, the batches are all the same, so unfortunately I will just need to go back on them to see if all the symptoms return, 1,if I only get the hyper symptoms and no bowle/stomach problems then maybe it's to much T3 and they don't have anything in the batch that's causing lactose problems, I fear I will get the hyper symptoms bk as I've never come off. The T3 so I think those symptoms will still remain, and not be linked with hyperparathyroidism 🤷‍♀️... I'll just have to work it out... 👍

[Bellaowl in reply to birkie]

Have they tested blood sugar?

[birkie in reply to Bellaowl]

Hi Bellaowl💗Hi no not had blood sugar done to my knowledge, but I have renal impairment due to primary hyperparathiyroidism, my adrenal test was in the grey zone.. (endos words) so I had the adrenal test which showed my adrenal output was OK... I went back on the T3 last night before bedtime (I'm getting bother about not taking my thyroid hormones) I only took my 5mg as I always do at bedtime, 10mg 8am..10mg..1pm...my god I felt awful later on through the night, my sweating came bk, hand tremors,palpitations, jittery stomach, my bowles were making a rumbling noise and I had a really bad pain in my stomach, and a electric shock sensation all over my body, I woke this morning to that awful metallic blood taste in my throat and mouth(like poison 🤮) I had to try to gargal with mouthwash whilst trying not to vomit.. These symptoms have now diminished in the last few hours.. I feel much better now.. I'm now sure these tablets are the cause, 😭

[coneflower in reply to Jazzw]

microcrystalline cellulose is wood pulp and can be from a variety of trees. I have heard, as I had T3 compounded and it made me really ill. It was pure T3 and microcrystalline cellulose only. Yet i can take in in other preps so I assume it depends on the wood pulp source.

[birkie in reply to coneflower]

Hi coneflower ❤️It's strange how this batch is affecting my bowles/stomach never had this problem with this in the 12 months on it, but it's even stranger now I'm off it my bowle/stomach symptoms have gone, but also some symptoms I've attributed to primary hyperparathyroidism have gone to.. They really did feel like hyper symptoms but they can cross over as you can get hyper symptoms in primary hyperparathyroidism, but my T3, TSH are in range, no sign of over medication, and they have gone now I'm off the t3🤷‍♀️but I still have the other symptoms of primary hyperparathyroidism, urinating loads, server thirst, bad joint pain mild headache, 🤷‍♀️ waiting on endocrinologist appointment at Hexham on the primary hyperparathyroidism diagnosis, I suppose I'll have to bite the bullet and go back on them to see what happens 😩

[Bellaowl in reply to birkie]

I’m sorry you are having such a worrying time and it’s all so confusing.

Polyuria and polydipsia and tiredness are classical early signs of diabetes. The surgery can quickly test your urine, some chemists will also. It’s at least worth eliminating it.

I have type 2 and urine was a major sign. But I then developed vaginal thrush. Once I treated the thrush with a pessary the polydipsia lessened markedly.

I also take riboflavin B2 which also seems to help the bladder wall muscle.

Just ideas to think about.

Bella🦉