Help

[palberts01]

I don't have new labs will be drawing next week. Extreme fatigue, hair dry, horrible joint pain, take 1000mcq vitamin d daily tried 5000 day too much,legs swelled, take 125mg Unithroid. Endo doc doesn't want to try NDT because have heart palps. Ivrme tried adding T3 but again heart palps. Giving up in ever feeling better..keep going to the doctor and never feel better 3 tears since Total thyroidectomy

[shaws Administrator]

I am sorry you are suffering. Since it is three years since your thyroidectomy and you are worse, no wonder you feel awful and don't know where to turn.

I have my thyroid gland but I did not get well on levothyroxine. Some of us cannot convert it to sufficient T3. It is T3 which is the active thyroid hormone and is needed in our millions of T3 receptor cells.

Members who have had a thyroidectomy will respond when they read your post.

However, I do not know why someone with no thyroid gland isn't on a combined dose of T3/T4 at the very least.

You need the doctor to do a Free T4 and Free T3 blood test to give a bigger picture. This is a link which explain why:-

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

The blood tests should always be at the very earliest, fasting (you can drink water) and allow a gap

Ask for B12, Vit D, iron, ferritin and folate to be tested too. Get copies of results and post on a new question.

The following may be helpful:

thyroidpharmacist.com/artic...

We can get palpitations due to not being on an optimum dose or we are sensitive to fillers/binders in the hormones.

Always get a print-out of your blood test results with the ranges and post if you have a query.

[palberts01 in reply to shaws]

Hi finally got labs had to pay out of pocket

TSH (high sensitivity) 1.02. 0.45-4.50

Free T3. 3.0. 2.0-4.8

Free T4. 1.5. 0.8-1.7

Vitamin D. 34.9. 20-50 optimal

CRP. 4.1. Below 0.9

Fasting glucose. 90. 65-99

[shaws Administrator in reply to palberts01]

I see that your FT3 is on the low side and could be higher as Vit D also. As this post is now more than two weeks old, put the above onto a brand new post so that those who have more knowledge than me will also respond. Also state the dose/medication you are taking.

Give a short background of your thyroid health for those who have not read your previous post. I really feel sorry for you as you have not recovered since your thyroidectomy and your fT3 is could be higher.

I had palps every single day on levothyroxine and they were far worse during the night. I had to call for an ambulance a lot of times - even from work.

When I added some T3 to T4 I immediately had an improvement and palps improved. On T3 alone I am well. But not everyone is the same. The Endocrinologists know nothing nowadays about NDT, and it can be more conducive for our body as it is not using synthetic hormones it could suit you better.

Maybe try adding some T3 to your T4 first as that works for a lot of people too. Then you can source NDT on a trial.

Sometimes we have to trial a few variations to find what suits us best. If you need info on where to source thyroid hormones put up a separate post so that you can receive responses re your blood tests. Also ask for private messages to be sent to you. The post will then be closed

[SlowDragon Administrator]

Guessing you are not in UK?

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies. Plus vitamin D, folate, ferritin and B12.

Essential to test FT3 and FT4 plus vitamins

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.

If on Levothyroxine, don't take in the 24 hours prior to test, (and if on T3 or NDT don't take in 12 hours prior to test), delay and take straight after

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

Low FT3 can cause palpitations

Also might consider trying strictly gluten free diet. Other thyroidectomy patients on here have found it helps

[palberts01 in reply to SlowDragon]

Hi, thank you for your knowledge. I live in Arizona US I've had all those tests my T3 is never optimal but when,I add T 3 I have increased paplitations,.does thus go away a little frightening. Joint pain is what bothers me the most and fatigue. My,iron was low last time, but Doctor said no,to,iron cause it was borderline. Those blood tests you suggest are the ones I do. They always tell me you don't need fasting, so I take in am and get blood drawn, don't tests are inaccurate aren't they. My T4 is always high, TSH is on the really low side, T3 is low

[SlowDragon Administrator in reply to palberts01]

Gluten can cause palpitations.

Most thyroid patients have some degree of leaky gut, then gluten and/or casein in dairy become problem

Low vitamin D often underlying issue....though I guess you get plenty of sunshine in Arizona!

Vitamins must be optimal before adding T3

Also if gluten or other issues going on, then these need addressing first

You don't need any gut symptoms at all to still have significant problem with gluten, suggest you try strictly gluten free diet for 3-6 months, see if it helps. Ideally ask for blood test for coeliac firsf

Selenium supplements can help improve conversion of T4 to T3

Definitely test B12 and folate too

Low stomach acid is very common and leads to low vitamin levels

[shaws Administrator in reply to palberts01]

It could be levo which is causing the palps. It did to me. Palpitations are very scary, especially when you don't know the reason for them. Doctors are apt to give us betablockers instead.

If we cannot convert T4 to sufficient T3 that could also be the cause (bear in mind I am not medically qualified). T3 is needed in all of our T3 Receptor Cells and we have millions brain and heart need the most.

This link is by a doctor now deceased who was incensed by the way we are managed nowadays. He would never prescribe levo. Only NDT or T3 for thyroid resistant patients.

web.archive.org/web/2010112...

[palberts01]

Hi finally got labs had to pay out of pocket

TSH (high sensitivity) 1.02. 0.45-4.50

Free T3. 3.0. 2.0-4.8

Free T4. 1.5. 0.8-1.7

Vitamin D. 34.9. 20-50 optimal

CRP. 4.1. Below 0.9

Fasting glucose. 90. 65-99