T3 does not work for me?

[Gillsy]

Merry Christmas everyone! Can anyone help out, I have Graves' disease take 125mg levo, 2 yrs ago an endo prescribed T3 20mg to be taken in half dose each day, over the months I've tried T3 and I feel worse than Levo only, why? I am moodier, aching joints etc. I have stopped taking T3 again and feel a bit better in general, all opinions welcome. I will go back to NDT on the new year felt good on armour.

[Gillsy]

Armour worked great for me. My GP said the levo/T3 combo should be the same as armour, however, I felt awful. I do NOT feel good on levo only hence the fact an endo prescribed T3 my question is to see if any other people felt worse using T3?

[Hidden in reply to Gillsy]

In my case it's synthetic T4 and T3 that just didn't help me at all, yet I'm doing a lot better on NDT.

[marsaday]

What dose did you feel good on when taking NTH ? It is important to see if you are on a like for like comparison with 125 T4 and 20 T3 as the first point of call.

3 grains = 114 T4 and 27 T3 for example.

It may be a case of tweaking the T3 amount.

T3 is best used in 5mcgs doses and i find taking T3 in the afternoon works better than in the morning. You could try taking the smaller doses 4 x per day to see if that improves things.

[Hidden]

Hello Gillsy,

I am sorry to hear you are still having troubles.

Have you been supplementing B12 and folate because in previous posts you were low?

Have you have had Vit D levels tested yet?

Did you address any gut issues?

Nutrient deficiencies and gut issues such as candida and gut dysbiosis will inhibit thyroid hormone synthesis.

In the stomach there are cells called parietal cells that produce hydrochloric acid that allow digestion and absorption of our foods. They also produce something called intrinsic factor which allows us to absorb vitamin B12 and folic acid. If the adrenals glands are compromised, it can effect our ability to produce acid so we can’t digest out food properly.

Symptoms are bloating, heart burn, indigestion, and increasing intolerance to foods. This low acid production will also contribute to yeast and/or parasite overgrowth in the intestines.

Folic acid keeps homocysteine in check and high homocysteine levels (from low folic acid levels) can disrupt thyroid metabolism at the cellular level by blocking T3 from binding with a helper enzyme.

It is not always the thyroid meds that are wrong but the under lying factors that encourage them to work.

Flower

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Disclaimer: I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

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[Gillsy in reply to Hidden]

Hi flower thanks for the information I take lots of supplements. My blood results are all at low range for vitamins and minerals gp prescribed ferritin it moved up a tiny bit and I've to get bloods checked again in 6 months how can I increase my ferritin count? As for the other responses Graves' disease, however, RAI 17 years ago. As for gut issues I have not addressed them yet a bit scared to go gluten free. Thanks

[Hidden in reply to Gillsy]

Gillsy,

Vitamin D plays a mega important role regulating the immune system and insulin secretion and thyroid hormones will not tolerate a deficiency.

Low iron levels can impact how thyroid meds work and cause negative reactions like palpitations, nervousness, and anxiety in someone taking thyroid hormone replacement.

I can't advise on raising iron levels as don't supplement myself but many members do. Repost a new question with ferritin in the title for members to comment.

Addressing gut problems will help any nutrient and thyroid hormone malabsorbtion issues. I have found a gluten free diet very beneficial in not only making my thyroid hormones meds work better but reducing inflammation (aches & pains) in my body.

Flower

Vit D deficiencies

chriskresser.com/the-role-o...

Ferritin & thyroid hormones

tiredthyroid.com/cofactors....

Thyroid & gut connection

chriskresser.com/the-thyroi...

…………………………………………………………………………………………………………

Disclaimer: I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

…………………………………………………………………………………………………………

[Beverleyb in reply to Gillsy]

Sorry Gillsy, I didn't realise you had RAI. My brother had RAI for Graves many years ago, i hardly see him so I don't know how his health is at the moment.

[helvella Administrator in reply to Gillsy]

You might find my iron document of some use/interest:

dl.dropboxusercontent.com/u...

[Beverleyb]

I thought that too! I thought Graves was Hyperthyroidism ?

[helvella Administrator in reply to Beverleyb]

Graves disease is NOT hyperthyroidism.

Graves is the production of TSH receptor antibodies which get locked onto TSH receptors and which, in those with working thyroids, cause excessive production of thyroid hormone.

Graves may continue long after the thyroid is gone.

[Beverleyb in reply to helvella]

I didn't realise that sorry for my ignorance! More reading is in order i think!

[suemagoo2 in reply to helvella]

Thankyou I always thought it caused hyperthyroidism in everyone like it did in me. Such a complex thing, the thyroid.

[helvella Administrator in reply to suemagoo2]

suemagoo2,

Even if everyone who ever had Graves antibodies suffered hyperthyroidism, it would be wrong to say that Graves is Hyperthyroidism.

There are several other causes of hyperthyroidism such as a toxic multinodular goitre. Or a pituitary tumour that churns out too much TSH.

It would also mean that in someone without a thyroid, the other effects of Graves could not be called Graves!

There are (broadly) three types of TSH receptor antibody. Stimulating. Blocking. "Neutral". The stimulating antibodies make the thyroid put out too much thyroid hormone. This used to be called by the descriptive term "long-acting thyroid stimulator (LATS)" - before its nature was identified. The blocking form gets to the TSH receptor and appears only to block the action of TSH. The neutral antibodies seem to have all the requirements to fit TSH receptors, but have little impact either way. In some people there is a balance such that the overall effect of the stimulating antibodies is balanced to some extent by the others.

[Heloise]

Hi Gillsy, one possibility is that when you take T3 with Levo, you are building more reverse T3 for some reason. Usually it is due to poor conversion. Do you think your ferritin level falls or maybe your cortisol goes up? Do you get tested for those?

[RedApple Administrator]

rowan-1, Instead of making such an unhelpful comment, you could have looked through Gillsy's posting history which explains that she had RAI.

[BonsaiKid]

Perhaps there is something in the tablet that you are allergic or intolerant to. It's common for people with Graves disease to have allergies.

Hope you get it sorted out and feel better soon.

[claudiasmum]

I also didn't feel well on a T4/T3 combo but much better on NDT.

I think with hindsight it was because the T3 dose was changed too quickly and not tweaked. First it was 20mcg then when that didn't work it was put up to 30mcg. On 30mcg my weight shot up because I was suddenly very hungry and I was hot all the time.

I then switched to 3 grains NDT and that was perfect. As was said above that contains 27mcg T3.

My endo thinks I am mad because any dose change alters TSH by only 0.01 so he says the difference is negligible but the effect on my FT3 readings is much higher (although he disregards them because he says they are subject to so much daily variation that they are not useful).

Although a lot of people on here say FT3 should be at the upper level of the range (but then tell you not to take meds before the test) I personally disagree. My sweet spot is between 60-80% of range presumably on the basis that it is upper end of range immediately after taking the meds and at 60-80% at its lowest point i.e. just before I am due to take them again.

[helvella Administrator in reply to claudiasmum]

You make your point about where you feel best very well. I tend not to be prescriptive about where in the range because of what you say and that we are all different.

[claudiasmum in reply to helvella]

Absolutely agree. With FT3 there are far too many variables.

[helvella Administrator]

If you don't have time to make a considered response, please feel free not to make any response.

It is better not to respond than to make an inappropriate response due to not understanding the situation. Then to blame the original poster - telling them they got their post title wrong.

[RedApple Administrator]

Reallyfedup123, Participation in this forum is entirely voluntary. I am not aware that the OP specifically requested input from you personally. If you do not have the time to take a brief look at an OP's profile and/or previous posts, then you should simply move on, and leave it to others who are prepared to take the time to give positive help to posters who are unwell with thyroid problems.

[Clutter]

RFU, unlikely Gillsy has RTH as she wouldn't feel better when she stopped T3. Entirely possible synthetic T3 doesn't suit her as she previously felt well on Armour.

[Clutter]

RFU, equally others don't do well on NDT but are fine on synthetic T3 and T4. There is no one size fits all.

[helvella Administrator]

The following are quoted from Thyroid Manager:

PATHOLOGY

It should be noted that only the abnormalities of the thyroid, orbital contents, lymphatic system, and skin can be considered specific for Graves’ disease; the other lesions probably could be caused by thyrotoxicosis of any cause.

AND

DEVELOPMENT OF THE CLINICAL PICTURE AND THE COURSE OF THE DISEASE

Graves’ disease displays an array of possible clinical patterns extending from that of goiter and thyrotoxicosis, but without ophthalmopathy, to that of ophthalmopathy without goiter or thyrotoxicosis.

thyroidmanager.org/chapter/...

The first expressly mentions "thyrotoxicosis of any cause". One of the problems with any statement which says "Graves is hyperthyroid" is that the reverse is often assumed. That is, ALL hyperthyroidism IS Graves. Categorically that is NOT the case.

The second quote expressly identifies the possibility of Graves WITHOUT thyrotoxicosis. This will always be the case when surgery and/or RAI has removed effectively all thyroid tissue. However the other specific abnormalities can continue to exist. Hence lack of hyperthyroidism does NOT mean lack of Graves.

[Eddie83]

Did you have FT3+FT4 taken while you were on NDT, and while you were on T3+T4? How do the amounts of T3 and T4 in your NDT, compare to the dosages of plain T3 and T4?

[Linda7577]

Hi, I was on Levo 75mcg and my numbers starting going up. My Vit D, and Ferritin have been checked, they were fine. My Dr put me on Amour. I had major swelling in my feet an ankles so she switched me back to Levo and added Cytomel 5mg increasing to 10 and then 15. At 15 I had major problems, body temp out of wack, like burning up at nite, headaches every day and fatigue. My bloodwork showed that my Reverse T3 was way above normal. I have cut down, I am still fighting fatigue but its getting better. I am on 75mcg Levo and 10 mcg of Cytomel except Mon Wed and Fri I take 15 mcg.

My body temp is back to normal in the sense I don't turn into a furnace a 3am. I am not as tired, I don't have the headaches every day. But I still have foot and ankle swelling if I sit, like at work. Does anyone else have the swelling?

Anyway, I think the amount of T3 is very high to start you off and I can definitely see why you might not feel well, since I felt horrible adding 15 mcg.

Linda