Free T4 high, what to do? Also IR

[ITHY]

Free T4 = 21.80 (pmol/L) or 1.69 (ng/dl) is high (ref. value 11.90 - 21.60 OR 0.92 - 1.68 )

TSH 0.431 (mIU/L) (ref. value 0.27 - 4.2)

Free T3 = 3.80 (pmol/L) or 2.47 (ng/dl) (ref. value 3.13 - 6.76 OR 2.04 - 4.40)

Also rather worrying: HA1c = 6.0 (pointing toward diabetes 2 and insuline resistance)

I weigh 62 kilos for 1m70 almost never eat sugar (also not the hidden types)

Had a total thyroidectomy for thyroid cancer (2000) and also have primary hyperparathyroidism = PHPT (relapse)

What to make of this high free T4? I feel very lousy (tired, brain fog, pains, depressed, a lot of intestinal problems; some are because of the PHPT, some may not be related)

Maybe someone can give some interpretion, some ideas?

Thank you very much!

[Jaydee1507 Administrator]

What hormone/s are you taking now? It looks like you have dropped NDT and combination therapy.

How did you take this test?

What time of day was it and when did you take your last dose of Levo before it?

Taking Levo within 24 hours or just before a blood test can show a false high FT4.

Recommended blood test protocol: Test at 9am (or as close as possible), fasting, last levo dose 24hrs before the blood draw, last T3 dose 8-12 hours before blood draw & no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process).

Testing like this gives consistency in your results and will show stable blood levels of hormone and highest TSH which varies throughout the day. Taking Levo/T3 just prior to blood draw can show a falsely elevated result and your GP/Endo might change your dose incorrectly as a result.

Your FT3 is terribly low.

What supplements do you take?

What are your latest results for ferritin, folate, B12 & D3?

[ITHY in reply to Jaydee1507]

Thank you very much! This may be the explanation.

I took T4 (125µg) before bedtime, the night before the test (tested at 8.00 am)! T3 is indeed low and some time ago I took T3 for a while, but could get a reaction (heartbeat) so I stopped. Maybe I should try again, I feel so bad most of the time. Part of it may have to do with hyperPARAthyroidism (which can cause problems with glucose metabolism, amongst others).

D3 (supplement) was okay, B12 folate and ferritin not tested (but previous test was okay). On and off I take a vit B complex.

Dear Jaydee, thank you for this reply!

[Jaydee1507 Administrator in reply to ITHY]

What may seem like an OK test result is often not OPTIMAL. Do post your results here to check.

Palpitations on T3 often due to starting too higher dose or low vitamin levels or both.

[ITHY in reply to Jaydee1507]

Thank you for clarifying. I have severe osteoporosis (-4.2) and the disease hyperPARAthyroidism is ongoing, further robbing the bones of calcium. There is no immediate solution because the adenoma has as yet not been localized and cutting the throat open for a 3rd time to look for a needle in a haystack is difficult.

But back to the topic of T3; what start up dose is feasible? And what is a good level of T3 in the blood (I realize we are all different, but nevertheless...) for it not to be detrimental to the bones?

[Jaydee1507 Administrator in reply to ITHY]

Its hard to know where your FT4 is so I'd suggest getting another test run, this time with the correct timing of 24hrs for last dose of Levo.

You may well need to drop Levo slightly but by maximum of 25mcgs, then add 5mcg T3. If all is well in a few weeks then add a further 5mcg T3 as a late afternoon dose.

[Shellian]

Hi ITHY, Sorry yo hear that you're feeling rubbish.

It is really complicated dealing with parathyroid symptoms and unravelling which are related to having no thyroid and subsequent replacement medication.

How are your PTH and Calcium levels? How is your hyperparathyroidism being treated? Have you been tested for any genetic conditions? How are they treating you for hyperparathyroid.

I had hyperparathyroidism due to a tumour on one of my parathyroid and also Medullary Thyroid Cancer. This was due to the MEN ( multiple Endocrine Neoplasia) genetic condition. I have the MEN2a strand.

Now I have had thyroid and parathyroids removed ( one got squashed back in and works a little) . Immediately after my operation some of the hyperparathyroid symptoms were gone...aching bones.

However now I'm classed as hypoparathyroid and that comes with its own problems. I am trying to keep all essential vitamins at good levels to help.

Please check the Parathyroid Uk website. I have found it a great help.

Good luck and please let me know how you get on.

[ITHY in reply to Shellian]

Thank you Shellian for your reply!

Indeed it is difficult. My calcium levels fluctuate and so does the parathormone, typical of the disease.

I have been looking for a solution for at least 5 years.

Interesting websites are parathyroid.com and Babak Larian. There is as of yet no localization of the adenoma (can be ectopic and false negatives or positives sometimes show up on scans).

After a first op for PHPT, I needed a second one because cancer was detected (2000). After that op gradually calcium and parathormone started going up again. It has now been 10 years since the gradual climbing and I feel completely lousy now.

I do need an op but the surgeon gives a 50% chance of finding the culprit and the op is very difficult due to previous scar tissue. Added problem: in all probability there is but one parathyroid left, if/when found and resected I end up with HYPOparathyroidism, another 'disease' and as you mention with its own challenges.

How did the reattachment of the one parathyroid go? Vascularisation is difficult with autotransplantation. Was attached in the throat or wrist or shoulder? Who did the surgery, if I may ask?

I hope you can find some balance and can feel well nothwithstanding all the difficulties.

Thank you!

[Shellian in reply to ITHY]

Hi ITHY,

You sound like a tricky case! I have heard of them not being able to find all the parathyroids before, I hope they do manage to find it rather than you get even more poorly. I remember thinking I was just really highly stressed, anxiety was sky high and couldn't understand why my legs and hip bones ached so much. May I ask what type of thyroid cancer you had? If it was Medulaary have you been checked for the MEN gene?

My operation was done at LGI (Leeds) by Mr Woodhead and his team. I believe he did one side and a team member did the other side as it was such a long operation. They made a neat job of my scar, one side is a little more lumpy than the other.

At the time, very little was said about the parathyroid tumour, and nobody at all told me anything about the symptoms or consequences of being hypoparathyroid. After my operation I couldn't understand why I had pins and needles in my hands, feet and my mouth was tingling. I thought it was just the anesthetic wearing off until they asked me to report any feelings of pins and needles. I was given Calcium immediately and then frequent calcium checks were carried out. Since then, I have had to research and find out everything myself. For many years I have thought that it was lack of thyroid causing me to feel so rough but now I realise a lot of the time it is due to Calcium. It is complicated.

As far as I know the remaining parathyroid was squashed up and put back in my neck. For a lot of years ( I had my op in 2007) I have been told it had not worked, but this year I found out that I did have a PTH reading so it must be working a little bit, no idea when it started to work. Still need the One Alpha (Alfacalcidol) and still get low calcium symptoms My low calcium symptoms do seem to have been less frequent with increasing VIT D supplement. However, I think it is a fine balance getting Calcium levels right, not too low or not too high. Waiting to have another blood test and will be interested to see how the extra Vit D has affected Calcium result.

Thanks for the tip off re website I will look at the Babak Larian one.

I really hope you find an answer. Keep posting on here.