Please Help...feeling desperate

[Karinjeanne]

Thank you so much everyone. I have edited my post to include the lab ranges. Thank you so much to everyone for your amazing care and kindness.

I posted earlier but have not had a response yet. I apologise for posting again. I don't know what to do I am feeling so bad. I am wondering if it is my thyroid that is the problem, but my doctor said she doesn't understand the thyroid lab results because she has never used NDT. She said I must stop it and then get my labs done again and then she can advise.

I am presently taking 2 grains of NDT (thyroid s) She wants me to take synthroid and then get my labs done again.

This is what I am experiencing

Cognitive decline. I cant string two sentences together. I cant work. I have a business and feel a complete dunce when I am there. It is so embarrassing I just want to run away.

I cant think

I cant plan things or figure things out. I cant concentrate. I cant articulate.

My thyroid is swollen and very painful.

TSH 0.07 (0.35 - 4.20)

T4 9.4 (10 - 20)

T3 6.0 (2.6 - 5.7)

Thank you so much .

[fibrolinda]

No where near an expert I'm afraid. Have you got the ranges for your results? They actually look pretty good, lower t4 is pretty normal on NDT ad t3 looks near top of range? Can't be sure without ranges. So you have hot swollen thyroid and your GP isn't investigating why? I would ask for a scan at the least. As she wants you off NDT I take it she is blaming it for the swelling??? Have you had b12, FERRITIN, FOLATE and vitamin d checked? They're often low in peeps with thyroid issues and getting them optimal, not just in range but optimal can make big difference. Your symptoms imho point to under medicated but labs seem to say otherwise. Where your bloods taken early morning, fasting and no NDT for 12 hours before? Are you taking biotin, it gives false low TSH and false high t3 t4 in some lab tests.

Lindax how long have you been on 2 NDT?

[Karinjeanne in reply to fibrolinda]

Hi Fibrolinda Thanks so much for responding. I haven't had my b12 levels checked, but doc did test for iron which was a low ands he gave me a supplement to take. I've been on 2 NDT for 6 months. Was on thyroxine before that 2 mcg, for 10 years. I did take the blood tests fasting and no NDT for 12 hours. Can you tell me what a scan would potentially show? My thyroid always looks like there is a tennis ball in my throat. Thanks again for taking the time.

[fibrolinda in reply to Karinjeanne]

What iron supplement and how much? It is advised on here to take high dose vitamin c with iron supplements You really need the B12 etc checked. And a painful swollen thyroid, a goitre, is not normal, has she palpitated it, what does she say is causing it? A scan would rule out nodules.

There's a lot of wise people on here (not me ☺) who can help you,

New posts catch the eye so sometimes best to repost particular questions that may have slipped through or you haven't asked yet

[437jd]

I'm not knowledgeable enough to comment but I'm sending you a hug because it's awful when you feel ill and don't feel yourself

[arpinsandie]

go back to your doctor you need a professional to take your bloods and talk over the results Sounds like brain fog is taking you over and that is horrible searching for sensible conversation and so frustrating and tiring If its ok to do so get some rest try to switch off completely or take in fresh air evaluate what you need to do be safe and kind to yourself More stress more distress more pain and all that goes with this challenging disease I'm sorry I cant help further You will survive this just take it at your own pace Find a doctor who cares ring practices and see if they have someone whose interest is you they are out there Buy a cream cake or whatever u like sit back let the world whizz by and get on the phone your bloods need checking asap

[shaws]

Karinjeanne, you first posted 7 hours ago which is the middle of the night in the UK so I'm not surprised you didn't have many responses.

First, you have to go to an Endocrinologist to examine your thyroid gland as it may be an infection.

NDT is the very original thyroid hormone since 1892 up until the introduced levothyroxine. Many of us on this forum cannot recover on levothyroxine alone. Some when T3 is added to levo and some have to switch altogether.

My preference is NDT or T3 or T3/T4 but it is not the doctor's preference but what your preference is as I assume you've taken levothyroxine before. The point is that blood tests are only a guide, it is our clinical symptoms which are the priority. I shall give you a link which may be helpful.

First, if we take levothyroxine. That is T4 only and should convert to T3. With NDT it contains T4, T3, T2, T1 and calictonin so blood tests which were introduced for levo alone cannot equate to taking NDT. This link may be helpful.

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

[humanbean]

The site isn't working normally today - News Feed is not getting updated, nor are notifications. I'm not sure about the actual posts themselves. You may find there are answers to your original post when the site finally catches up with the present time!

This problem has happened before, several times, and it is very, very annoying.

[bluebug]

Can you edit your post and put a range in please?

Also do you have any test recent test results with ranges covering vitamin B12, folate, ferritin and vitamin D? If so please post them as well.

[Karinjeanne in reply to bluebug]

Hi bluebug. Thank you for responding. I did edit my post to include the ranges. Thank you. I haven't had any other tests done except for iron which was low and I am taking an iron supplement.

[dang]

How long did you wait between your last dose and the blood test? Wondering if the FT3 result is showing a spike or not.

I know everyone says you can ignore FT4 results when on NDT or T3, but I've been reading a lot of info lately showing that T4 has an important effect of its own on the body and on cognition, I know there are members who add T4 to their NDT to deal with this and also since the T3:T4 ration can be a little extreme from NDT. I'm wondering if the addition of T4 would help you. But I don't know much about this personally it's just something I've started to learn about.

[Karinjeanne in reply to dang]

Hi dang. Thank you so much. I am going to try that. Do you think I can half the dose of NDT I am taking. (one tablet, instead of two) and add 50 mcg t4?

I hadnt taken my t3 prior to the test. Last dose was around 12 hours earlier.

Thanks again

[dang in reply to Karinjeanne]

I don't have enough experience with NDT to give that type of advice I'm sorry. My only experience is with T4 and T3. Hopefully a more knowledgable member would chime in there, but then again it's likely some will disagree with me on the importance of FT4 numbers. If you would like to consider this as an option and you don't get your answer here, I would suggest making a new post asking exactly this question about adding T4 to NDT and see what members suggest.