Hypothyroidism Medication: Hi All, I was... - Thyroid UK

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Hypothyroidism Medication

loz_689 profile image
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Hi All, I was diagnosed with an underactive thyroid almost 12 weeks ago, which I was prescribed Levothyroxine for. I've seen absolutely no difference in symptoms whatsoever...if anything, they're getting worse. I paid for private blood tests to get an overall picture rather than the routine FT4/TSH tests. My results have come back and my FT4/TSH are now both back to normal (FT4 = 22 / TSH = 0.8) but my FT3 level is right at the very bottom of the range (3) and my RT3 level is near the top of the range (22) leading to my conversion ratio being below the healthy range (12). Am I right to go to my GP with this info and request T3 med to complement my levothyroxine in order to boost my FT3 levels, as I am really struggling with the symptoms...in particular the tiredness and weight loss resistance. I'm also noticing the depression and anxiety symptoms starting to increase as the tiredness prevents me from being as active as I used to be and I find myself just needing to sleep all the time. Any advice greatly appreciated!

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greygoose profile image
greygoose

You would be right to ask for T3, yes. But not on the basis of the RT3 ratio. I doubt your doctor has any idea what that is!

If your FT4 is at the top of the range, and your FT3 at the bottom, then you aren't converting very well - you don't need an rT3 test to tell you that! Increasing your T4 will only make that worse, so you need some T3 added to a reduced dose of levo.

Your rT3 is high because your FT4 is too high. Your rT3 ratio is below 12 because your rT3 is high and your FT3 is low. But, as I said, you really don't need rT3 tests to tell you that. You can see by just comparing your FT3 with your FT4 - they should both be about equal percentages through the ranges. :)

loz_689 profile image
loz_689 in reply to greygoose

Thank you! I have a feeling getting any FT3 medication is going to be a battle so wanted to check I was right before I start the conversation with my GP :)

greygoose profile image
greygoose in reply to loz_689

It probably will be, yes. :( Good luck!

CSmithLadd profile image
CSmithLadd in reply to loz_689

If it's a battle, please get another physician.

Because this one is a no-brainer. As grey goose stated, the fact that your Free T4 is high and your Free T3 is low is evidence of overt and clinical hypothyroidism. Is your TSH really 22? I'm hoping that is a typo. Because what is your doctor waiting for... Christmas? Makes no sense whatsoever.

High Reverse T3 is just a grey goose explained: the excess T4 you cannot convert is turned into RT3 so it can have a place to go. Reverse T3 blocks the receptors to the cells that allows T3 to get where it needs to go to restore you health. But... as grey goose warned as well, it might not be a good idea to tell your current doctor. His head will spin around if told all that as he hasn't the vaguest idea of what all that means.

With Reverse T3 so high, you may need T3 alone to get your body back to even right away and to stop the fall. We need T3 in our cells or the entire body doesn't function well. Therefore, it can be tended to with either a T4/T3 combination as in Natural Desiccated Thyroid (NDT) hormone or T3 added to Thyroxine (my least favorite combination when RT3 is involved). And if T4 is continued at this time (hopefully along with sufficient T3), then monitoring should be more frequent until you are at least feeling remarkably better.

Your lack of conversion of T4 is probably due to low nutrient levels of those that facilitates thyroid hormone conversion. It may be due to a lack of stomach acid, as this is the most common reason when hypothyroidism is involved. Low stomach acid will interfere with absorption and keep you from regaining proper nutrient levels from the foods you eat and with routine doses of supplements. Even thyroxine needs to be higher in dose when there are stomach issues (such as low stomach acid) with the patient. Many doctors have no clue of that either.

Now that I think about this and how very important it all is to your health, perhaps you should see an endocrinologist. I understand that in the U.K. they are bound with ridiculous ranges to consider. However, they are also bound to investigate to the nth degree when a patient shows signs of hypothyroidism that is not responding to standard protocol. Then they can deviate. Symptoms rank over numbers... even in the U.K. It may seem not to be so, but it is. Even doctors in the U.S. have to be reminded of such. They forget to do what they have sworn to uphold.

You could ask for a referral, or you could simply call an endocrinologist yourself and ask them to peruse your lab results. You doctor cannot help you. you are entitled to proper care.

The U.S. is just as bad. It's horrible getting proper treatment here. Doctors are trained to write prescriptions and use "by the numbers" medicine. But it is they who find it easier and fail to remember that we must be treated as individuals. Because it doesn't work for individuals to all be treated with the same protocol -- nor does it work to go by the same numbers for all patients. Every single person is different and thus has differing needs. Doctors don't want to work that hard and believe sticking to the protocol that keeps them from being sued. Unfortunately, they are correct. It's easier to defend sticking to the easiest path. Ugh!

You job is to find a doctor who "gets it." Then you won't have to fight to get what you need to be healthy. Find yourself a good endocrinologist who thinks outside the box. If it takes you some time, in the meantime you're in good hands right here at Thyroid U.K.

Hope this helps!

loz_689 profile image
loz_689 in reply to CSmithLadd

Luckily it was a typo! My TSH was 0.8 and my FT4 levels were 22! I can't find the edit button to amend my original post.

Can I ask why you recommend an NDT rather than a combination of T3/T4? My GP appointment is tomorrow and I was going to ask for a low dose of Cytomel to take in combination with Levothyroxine? Which NDT would you recommend?

I'll keep fighting until someone listens! It impacts too much on my life to ignore! Unfortunately I need a GP referral to an endocrinologist! Unless I want to pay 1000's which I can't afford :(

CSmithLadd profile image
CSmithLadd in reply to loz_689

I'm sorry I didn't see your reply until now. Yes, keep fighting. Your health ultimately determines your quality of life.

NDT does very well with people who are too sensitive to synthetic T4. If your body has no issue handling synthetic T4 then it will be fine in combination with T3.

Any NDT with a ratio akin to 38 mcg. T4 to 9 mcg. T3 would be just fine. Taking one pill instead of two is preferred so mistakes don't occur. Also, if you need to up the dose per your doctor, the doctor has less hesitancy to do so as if you were taking T3 in its own form. They often just say take more Levo instead of increasing the T3. But with NDT, the T4 and T3 are together, so you take 1-1/2 grain or 2 grains instead of the initial 1 grain. (One grain = a 60 mg pill contains 38 mcg. T4 and 9 mcg.). You see?

You can ask for NDT (mentioning how it would be easier and safer than you dosing with two different thyroid hormones also of differing doses). But if only Levo is offered along with the T3 then that will be just fine.

I'm hoping your doctor can help you. Sometimes all they need is a reason to deviate from their norm. Obviously, you're having trouble converting T4 into T3. It's probably due to a nutritional deficiency. Perhaps you can get your doctor to refer you to a nutritionist first. Without adequate iron, vitamin d, selenium, etc. then conversion is poor. Tell your doctor these things. I'm hoping he or she is on your side. Most are, they just don't know what to do.

On another note: The edit button is at the bottom of your post. Access it by clicking the caret to the right of the word "More."

Healing hugs to you!

loz_689 profile image
loz_689 in reply to CSmithLadd

Thank you, I've now amended my original post. My GP refused to give me any FT3 medication despite being right at the bottom of the range. I refused to leave until she did something and I got the agreement she would write to an Endocrinologist for further advice...she said the local CCG had a blanket "no FT3 prescriptions" approach and that also included the Endocrinologists so not holding out much hope. In every other way I'm fit and healthy - I follow a tailored nutrition plan from a nutritionist and I exercise regularly (only recently given up teaching fitness classes myself). I'm beyond frustrated with such a bureaucratic system. I've just ordered some multivitamins because I figured a boost wouldn't hurt but I find it laughable that they think it's perfectly ok to ignore something that has such debilitating effects on people.

CSmithLadd profile image
CSmithLadd in reply to loz_689

Good for you, loz! Kudos for standing up for yourself and being proactive about your healthcare.

You should begin reading materials that will help you know what to discuss with the endocrinologist. It is important to your health to understand what is happening to you, and how it can be corrected.

The main thing is that you are getting the T4 in your blood (as the blood tests attest -- but that only signifies that you are taking thyroid hormone). When T4 sits and can't be converted into T3, it becomes Reverse T3. Reverse T3 eventually makes a person symptomatic as it is indicative that T3 is low because the T4 isn't being converted, but instead is building up as Reverse T3.

Reading the material below in its entirety will give you a crash course of how all this works and how it can be remedied:

restartmed.com/thyroid-lab-...

By providing your doctor with information you've read and think can help you; it's no different than you seeing a commercial with a new pharmaceutical you think might help you -- Big Pharma loves it when that happens as they sell most of their wares this way, whether they are needed or not.

This way you let the doctor off the hook. The Endo would be much more likely to see things your way, at least on a "trial" basis if nothing else. Then, as your condition undeniably improves, the treatment will be continued because it has proven warranted. This removes any "risk" to the doctor to deviate from standard practice (protocol).

When buying nutrients, be sure to get those that are readily bio-available. You'll want certain nutrients to already be converted. Most don't realize that bio-availability of the foods we eat can be affected by cooking methods or whether or not eat certain foods raw. Once you get an idea of how this works, you can understand how vitamins can often be produced in ways that are not as effective for you as others. So we learn about it and make sure to get the most bioavailable nutrients we can (if we have trouble converting them otherwise).

americannutritionassociatio...

Make sure you check optimal nutrient levels as set by Functional Medicine protocols.

I have a feeling you are in need of stomach acid supplementation as it could be nutrient deficiency that is keeping T4 from being converted into T3. As such, you must assure absorption of nutrients. The most important ones are listed at the link below. Please read all about it and perhaps inform your doctor of your suspicion that you are low in nutrients. Ask for a referral to a nutritionist to help correct that problem. Conversion of T4 depends on nutrients being available. There is a reason why your T3 is low even though you have ample T4. The cause must be found.

lifeextension.com/protocols...

Try the baking soda test and see what it tells you about your lack of stomach acid. Simple and safe home test that works:

scdlifestyle.com/2012/03/3-...

Supplementing with HCL with Pepsin or Betain with Pepsin will help tremendously if you are low in stomach acid. I'm sure you are, as without decent T3 levels, the body's functions slow down. Stomach acid is among the first things that reduce with hypothyroidism. It becomes a chain of events after that... without stomach acid there's little absorption of the very nutrients your body needs to convert the thyroid hormone T4 you're being given for treating hypothyroidism.

Just wanted to be thorough for you so you can gain a grasp of what is going on and what probably needs to be addressed to correct it. But again, please be proactive and read all the information at the links provided. The more you know, the better your healthcare will become because you will demand it to be so.

And rest in that if you cannot get the care you need, you might be able to learn enough to correct the problem yourself. Once you are able to effectively convert T4, all things should become much, much easier for you.

Healing Hugs!

SlowDragon profile image
SlowDragonAdministrator

How much Levothyroxine were you started on

Can you add the actual results and ranges on these

TSH of 22 is not within most ranges

Plus have you had TPO and TG thyroid antibodies tested

Have you had vitamin D, folate , ferritin and B12 tested

For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, don't take in the 24 hours prior to test, delay and take straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .

Link about thyroid blood tests

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

Link about antibodies and Hashimoto's

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

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

loz_689 profile image
loz_689 in reply to SlowDragon

I had all my antibodies and vitamin blood tests when I was first diagnosed with an underactive thyroid...they all came back as fine. I got the figures round the wrong way in my original post! My TSH was 0.8 and my FT4 was 22.0. The tests I've just had done were through medichecks as my GP was refusing to do my FT3/RT3 tests, which is how I know my FT3 levels are right at the bottom of the range. I wish I had known not to take Levo before my last blood test! I'll know for next time!

SlowDragon profile image
SlowDragonAdministrator in reply to loz_689

Essential to also test vitamin D, folate, ferritin and B12

Via Medichecks if GP unhelpful

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