Allergic to T3: I started self prescribing T... - Thyroid UK

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Allergic to T3

craftyang profile image
23 Replies

I started self prescribing T3- Tyromel in November 2016. I have increased to dose from a starting dose of 6.5mcg. I am now on 31.25mcg. I know in that time I have probably increased to fast but I did do it in increments of 6.25. I recently went up to 37 mcg and noticed tremors and anxiety after one day so reduced it again. My problem is that I think I am allergic to the medication. This is saddening for me, because it's the first time in 5 years I've started feeling myself again. I've regained energy and feel alert and even feel like my memory is starting to return! I really don't want to stop taking it. Is there another version of T3 anyone can suggest? Can I just take benedryl every day? My skin has become hypersensitive to any change in temperature and is intensely itchy all over my body all day through. It has even woken me up at night and is incredibly uncomfortable. Even if I'm not itchy, if I have leaned on something or I get anything in my skin it goes bright red and becomes raised.

Looking forward to hearing about any alternatives or solutions.

Thanks, Angie

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23 Replies
Pastille profile image
Pastille

It seems like you may just have to try another T3. Have you only tried Levo and Tiromel so far? Some people are experimenting for quite some time before they find what is right for them. Maybe try Uni Pharma T3 next, many seem to do well on that. If you do, bear in mind that Uni pharma is considered to be more powerful than Tiromel, so you will need to be careful

craftyang profile image
craftyang in reply to Pastille

Thank you for replying.

Do you know how to replace? For example, if I got another brand, would I start from the beginning again with dosing? Or could I slowly replace, for example, 6.25 mcg of current T3 with new T3 at a time until I'm taking the new brand completely?

Angie

Pastille profile image
Pastille in reply to craftyang

I'd ask one of the admin or regulars that one. There are a lot more experienced people here. I started on 6.25, increased too fast and was anxious, angry and moody. I went back down straight away. You will feel it if it's too much but definitely start low and slow, don't rush it atall

shaws profile image
shawsAdministrator in reply to craftyang

No you don't start at beginning, you remain on the same dose you are taking at present and increment by 1/4 tablet if you feel you still need a slight increase. Pulse/temp should be taken and if either goes too high, drop back to prevous dose.

craftyang profile image
craftyang in reply to shaws

Thank you for your advice. I know which one I'm going to try next and now I know how to continue taking it. Thank you again. Angie

shaws profile image
shawsAdministrator in reply to craftyang

I shall give you a link which might be helpful. I follow this doctor's protocol (he's now deceased) and he was an Adviser to Thyroiduk.org.uk. I am now well. Go to the date June 11, 2002and the question after it.

web.archive.org/web/2010103...

This is an excerpt from a response to a question further up the page of the above link:-

Dr. Lowe: No doctor can intelligently decide what a patient should do with her thyroid hormone dosage solely by the results of thyroid lab tests. We can make informed decisions about dosage only when we know the patient's clinical status and have the results of physical exam procedures. Most endocrinologists and other conventional doctors would likely disagree with me about this. But their belief that they can determine correct dosages solely by lab test results is a major reason that millions of hypothyroid patients chronically suffer from hypothyroid symptoms despite taking thyroid hormone. I wish you success in your treatment.

craftyang profile image
craftyang in reply to shaws

Thank you. A very interesting read. I'm now reading through the rest of the page! 😊

shaws profile image
shawsAdministrator in reply to craftyang

I couldn't find this excerpt earlier:-

These clinical and experimental findings argue against that idea of "cycling" enabling patients to maintain improvement after stopping their use of T3. With increases and decreases in dosage, the only thing that has cycled in our patients is their fibromyalgia status. So, do I believe that "cycling" will "cure" cellular resistance to thyroid hormone? Unequivocally, no!

Third, the leaflet on Cytomel pharmacies give patients when they fill their prescriptions states, "POSSIBLE SIDE EFFECTS: NO COMMON SIDE EFFECTS HAVE BEEN REPORTED with proper use of this medication." This information is accurate—when plain, full-strength, one-time-per-day doses of T3 are used properly, there are no adverse effects. The only adverse effects occur when a patient takes a dosage that for her is excessive. With Cytomel, if overstimulation occurs, it can be stopped with one or two small doses of propranolol. Or the patient can simply reduce her dosage of Cytomel the next time she takes it. I want to emphasize, however, that when our protocol is used properly, there is no overstimulation to be avoided by using timed-release T3. The protocol has safeguards against adverse effects.

And finally, why do I specify that the typical patient use one full dose of non-timed-release Cytomel for life? Because extensive testing has shown that this is safe, effective, and most economical—when used within the context of our entire protocol.

web.archive.org/web/2010103...

Ramalodi profile image
Ramalodi in reply to shaws

I am a retired GP. I was taught may years ago: When it comes to thyroid function, "treat the patient not the paper". Thyroid function tests merely give the doctor a suggestion. They are not specific enough or sensitive enough to be absolutely relied upon. T3 readings of multiple bloods samples taken from the same patient on the same day may vary significantly.

shaws profile image
shawsAdministrator in reply to Ramalodi

Thank you and you're very welcome, especially being a doctor. All of our doctors who were taught as you were, were hounded and persecuted for doing as they were taught. Some lost their livelhoods and licences rather than go on with the persecution. Dr Peatield resigned his licence as he couldn't stand the strain.

Another doctor - a Virologist - was being sent patients for a consultation as the Specialists/doctors couldn't diagnose them as their TSH didn't 'fit' with the new guidelines, so we get CFS/Fibro and any other new names except diagnosed as hypo.

Dr Skinner was a Virologist so the 'mysterious disease' he was sent he diagnosed as hypo and treated them as he was taught. Eventually, he was called before the GMC about 7 times and it wasn't his patients who complained but he died of a stroke his staff, family and patients think was due to the strain.

worldthyroidregister.com/Go...

shaws profile image
shawsAdministrator in reply to Ramalodi

Are you aware that nowadays the BTA et al have told doctors not to prescribe levo until the TSH reaches 10 and many patients are quite unwell by then and sometimes TSH doesn't rise enough even if it goes up to and slightly over the range (about 5) no prescription.

shaws profile image
shawsAdministrator

To test (I haven't done this myself) if you are sensitive to any thyroid hormone take an anti-histamine tablet one hour before you take it. I you then don't have an 'effect' you have to change to another. I believe there are several T3's available.

The following liothyronine/T3nis available in the UK you would probably need a private prescription as doctors have been told not to prescribe which has caused a great deal of unnecessary anquish for many members.

Some members may send you information by Private Message of a source.

craftyang profile image
craftyang in reply to shaws

Thank you. I've taken antihistamines after the itching has started but never prior to taking the T3. I will certainly give it a try.

craftyang profile image
craftyang in reply to shaws

I tried this as suggested and so far today there has not been any itching at all. I'll definitely be changing!

shaws profile image
shawsAdministrator in reply to craftyang

Hopefully, the next one will be fine. I'm glad the experiment worked as you are the first one whose come back to say it the test was successful

craftyang profile image
craftyang in reply to shaws

Three days on a new brand of T3 and so far no crazy itching sessions. Thank you for your advice! I'd forgotten what it was like not to itch. Now I've got to wait and see if the dosage is still the same on the new T3.

shaws profile image
shawsAdministrator in reply to craftyang

That is a relief for you - no itchiness, Listen to your body as that's the only way we can reach a dose which makes us well with relief of all symptoms.

galathea profile image
galathea

If you are self treating anyway, why not just go for dessicated thyroid? (Ndt) Naturethroid is the one to start with, its hypoallergenic.

I've been down the t4. T3 route and swapped over to ndt about 5 years ago. I couldnt be persuaded to change back.... Its much more even.

X

Edited.... Its Naturethroid, not naturethyroid.... Thank you spellcheck!

craftyang profile image
craftyang in reply to galathea

An interesting thought. Perhaps it is something I should consider before trying the next T3. Thank you.

Learner1 profile image
Learner1

Are you allergic to the filler, e.g. cornstarch or lactose? My blood pressure shot up to 190/110 from a trendy bit if cornstarch in a liothryonine pill. I get one with cellulose now.

Hi I get liothyronine prescribed in the uk but I was taking it for years overseas and has to see an endocrinologist for it to be agreed that I stay on it. But it is available in the uk without a private prescription

Ramalodi profile image
Ramalodi

Was the 37 mcg the total daily dose or were you taking this dose twice a day. The tremours and anxiety and itch and feeling hot are all symptoms of hyperthyroidism (too much thyroid hormone) and I would suggest reducing the dose until the symptoms go. Taking too much T3 is risky as it can push you into heart failure.

Ensure you take the first dose at least 60 minutes or ideally 90 minutes before any food or drink other than water. Benadryl, I think, can cause some of the symptoms you complain of, so I think Cetirizine one (or even 2) per day would be a better choice.

It would also help to know your age and what the basic problem is?

Ruthi profile image
Ruthi

I was prescribed T3 (years ago, by Dr Skinner) and it was like waking from a long sleep! But within days my joints were siezing up painfully. I stopped, tried again a few weeks later, same response.

So I bought Thyroid S. The NDT everyone says causes allergic reactions. And have been fine on it ever since.

I'm the awkward one that is allergic to erythromycin. 'Oh No madam, you can't be allergic to that, its what we give to people who are allergic to penicillin.' I'm fine on penicillin!

Its rare to be allergic to all the brands. Just expensive finding out!

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