Tiromel not helping: Hi, I am from the US and I... - Thyroid UK

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Tiromel not helping

DanD182 profile image
10 Replies

Hi, I am from the US and I know this is a UK forum, but there seems to be some really good information on here. I’ve been trying to get to the bottom of some health issues that have been plaguing me for the last year. I went on a very strict low carb diet for about a year and a half and felt amazing at first, but then I began getting very cold hands and feet, new onset depression and anxiety, brain fog, digestive issues, poor appetite, and low libido. My free T3 was very low about 6 months ago at 0.5. After 6 months of eating carbohydrates again my free T3 only came up to 1.96 . From my research, T3 supplementation is exactly the thing that should be helping me in this situation. I ordered Tiromel online because it’s so difficult to find a doctor that will prescribe T3 where I live. The Tiromel seems so hit or miss, sometimes it feels like it’s working amazing and sometimes I feel terrible taking it. Should I give up on the T3 or should I try and get ahold of another brand?

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samiam257 profile image
samiam257

Have you had your T3 and T4 checked with labs through your physician? A simple thyroid test? I have all the same issues as you describe. I have hypothyroidism and have not leveled through right amounts in my dose.

DanD182 profile image
DanD182 in reply to samiam257

I have had basic thyroid labs done. Free T3, (free?)T4 and TSH. All were within range as my last test, but my free T3 was barley in range. From what I have read you will not feel good until your free T3 is in the upper quarter of the normal range.

Marz profile image
Marz

In addition to testing TSH - FT4 - FT3 - I would also test B12 - Folate - Ferritin & VitD. When Hypo these levels can be low and cause symptoms.

Do you have Hashimotos ?

DanD182 profile image
DanD182 in reply to Marz

I have not been diagnosed with Hashimoto's. I do have nodules on my thyroid and a history of autoimmune hyperthyroidism which resolved about 2 years ago. I’m working with a functional MD who wants to run a very comprehensive vitamin, mineral, and organic acid profile. Unfortunately it’s about a $500 test and takes a month to come back. But I will be sure to ask her if the things you mentioned are included in the test.

Marz profile image
Marz in reply to DanD182

It does sound as if it could be Hashimotos as you can swing from having hyper type symptoms to hypo ones.

Do you have your results from when you seemed Hyper ? Were the anti-bodies tested to confirm Graves ? We often see people here have been tested incorrectly - proclaimed to be Hyper - when in fact it is Hashimotos. Maybe check out which anti-bodies were tested.

DippyDame profile image
DippyDame

Without lab results for TSH, FT4, FT3, vit B12, vitamin, folate and ferritin all of which help paint a picture of your current thyroid health, it is difficult to comment.

Do you have lab results that you can post here?

thyroiduk.org.uk/tuk/about_...

However my guess, looking at your symptoms, is that you are hypothyroid.

You say your FT3 is very low,...

Personally I would not recommend a low carb diet, it can lower your T3 - and account for your symptoms

chriskresser.com/is-a-low-c...

It could also be that you simply need to treat with levothyroxine and raise your hormone levels to optimal. The majority of patients respond to this protocol.

However many also do not adequately respond to levothyroxine!

Why?

It could be that you do not adequately convert the storage hormone T4 to the active hormone T3 which is required by every cell in the body in an adequate and steady supply.

Poor conversion is indicated by high FT4 an low FT3. You may need to add a little T3.

Finding the correct dose of T4/T3 combo takes time and a lot if patience. It is also important to have nutrients at optimal level to support conversion Members here can advise.

However, before adding T3 to your levothyroxine dose ( I assume/hope you have been diagnosed as hypothyroid before starting on this journey) I suggest you should establish poor conversion using your labs.

Treating with T3 is the last resort, it is a very potent hormone and, if required, must be introduced very slowly by adding - to levothyroxine - a dose of 5 or 6.25 mcg (a quarter tablet) Tiromel contains 25mcg T3. Increases should be at 6 week intervals to allow the body to adjust to each increase.

Finally after you have titrated FT4/FT3 for some time...it took me nearly 6 months with daily checks on temperature, heart rate and blood pressure to avoid overmedication...and you find little or no improvement only then might you trial T3- only.

There is no quick fix for thyroid disease (think headache/paracetamol!). It takes determination, patience and research and good advice from experienced members here....and the correct thyroid hormone replacement.

My advice would be to start at the beginning with the correct thyroid and nutrient tests

thyroiduk.org/tuk/testing/t...

Good luck

DD

DanD182 profile image
DanD182 in reply to DippyDame

Thank you for the good advice. As of last test my TSH, free T4 and free T3 were all in range. Free T3 was just at the very lowest end of the range at 1.96. I’m working with a functional MD who wants me to get a comprehensive vitamin/mineral analysis done. I have not been diagnosed with hypothyroidism but I do have a history of autoimmune hyperthyroidism which resolved a few years ago. I have heard what you mentioned about low carb diets being bad for people with hypothyroidism but I have just had a terrible time trying to eat carbohydrates again, like my body forgot what to do with them. I was hoping T3 supplementation would be the end all for my problems, but unfortunately I think you are right, there is no quick fix for this.

BadHare profile image
BadHare

Are you following the guidelines re taking your T3, ie, away from food & anything other than water (water & lemon juice or apple cider vinegar helps digest meds better) for at least an hour? Is there anything that might affect your digestion & absorption from day to day if you’re having erratic symptoms? Do you avoid inflammatory foods that might mess up your digestion & gut health eg, processed junk like margarine & chemical sweeteners? These also mess up our mental health by encouraging the growth of bad gut bacteria. This messes up our heads, absorption of meds & nutrients, our immune system & hormone utilisation & conversion. Is it certain packets entirely that are at issue or are you having a different response to same pack? This might indicate whether it’s the quality of the meds or something you’re doing being the issue. Are you pedantic about your micronutrient intake & are all your levels of the recommended micronutrients optimal?

Have a peek at Chris Kresser’s functional meds site which is free. There’s lots of information on good diet rather than meds for better health which might help you choose what’s best for you, & what’s best for consistent hormone health. He’s keen on paleo/low carb though I prefer moderate intake for myself.

DanD182 profile image
DanD182 in reply to BadHare

I have not taken the medication without food, I will try that. I have not gone through one whole box yet, so I don’t know if I would have a different response to another batch. My diet is very clean, 90 percent unprocessed whole foods. I have not had my nutrients tested yet but will be doing that soon with my functional MD. I am familiar with Chris Kresser and I would prefer to handle this with diet over medication, but at this point I feel like I have tried every dietary approach possible and medication is my last resort. Thank you for the advice!

BadHare profile image
BadHare in reply to DanD182

Aargh!!! It took me a while to find that out, & also other meds or supplements need to be four hours away. Best is at least one hour before or two hours after. Hopefully it will start working soon.

I tried all sorts before getting thyroid meds but nothing will replace missing hormones.

Good luck!

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