Am I overactive?

[Johnjoe123]

Hi everyone,

I haven't been on here for a while as I had been doing well on t4/t3. I was taking 100 levo plus 15 thybon, began to feel very unwell about two months ago.

So had bloods done thinking I needed an increase as I have had a thyroidectomy last year.

Results as follows

Ft4 12. Ranges 8-22

Ft3 3.97 range 2.89 - 4.88

Tsh 0.14 range 0.36 - 4.94

Endo based on these results now wants me to reduce levo to 75 as she says I am overactive.

I am so confused and paying this consultant huge money , but I don't think my bloods show overactive???

[SeasideSusie Remembering]

Johnjoe123

Please stop wasting your money on an endo who hasn't got a clue.

Of course you're not overactive. Your FT4 is 28% through range and your FT3 is 54% through range.

When on a combination of Levo plus T3, the T3 will lower, or even suppress, TSH and also tends to lower FT4, so your TSH and FT4 are no real surprise. The most important result is FT3 and yours is possibly on the low side for you to feel particularly well. Many people need their FT3 in the upper part of the range (I need mine about 75% through range and I am on a combination of Levo and T3).

Your endo is making the mistake they all do, going only by TSH. Yes it's below range but that's to be expected when taking T3. If your endo doesn't know this the s/he shouldn't be prescribing T3 nor should s/he be taking good money to treat people incorrectly.

Is this endo by any chance a diabetes specialist? Look them up on the hospital website.

[Gerispice in reply to SeasideSusie]

I am having the same problem with an ending who is actually a diabetes specialist.

[SeasideSusie Remembering in reply to Gerispice]

Unfortunately this is very common. Most endos are diabetes specialists who know very little about treating hypothyroidism.

[Johnjoe123 in reply to SeasideSusie]

Thank you I needed that reassurance, I knew myself that I was not overactive! This endo is supposed to be the best because she gives t3 to patients.

I drive four hours to get to her and pay 180 a visit!

I am truly disgusted with the treatment given out by these so called experts.

I need to think about my next step, am nervous of increasing and not sure which to increase t4 or t3!

[SeasideSusie Remembering in reply to Johnjoe123]

Johnjoe

We have to experiment to find where we feel best.

I am like SlowDragon, I need both FT4 and FT3 around 75% through range. Other people are fine with a much lower FT4.

You need to decide what you want to try first as we can't really increase both at the same time, we need to do it gradually and find what works best for us .

If you increase your Levo, depending on how much you convert naturally then your FT3 will increase to some extent as well as your FT4. Maybe you could try that first, say a 25mcg increase Levo and retest 6 weeks later, see where your levels lie and how you feel. It took me many, many months (well over a year) of tweaking doses before I found the doses that suited me best.

Of course, if you ditch the endo, you have the problem of how do you obtain your Levo and T3. You may get your Levo from your GP, but you may not be able to get an NHS prescription for T3.

[Johnjoe123 in reply to SeasideSusie]

Can I ask you what dose of levo and thybon do you take, and in your opinion if an increase is needed which would you think is the one to increase?

[SeasideSusie Remembering in reply to Johnjoe123]

Johnjoe

I was stable on 112.5mcg Levo plus 25mcg T3 (self sourced not prescription so 25mcg rather than 20mcg). Recently something has changed and I am currently taking 125mcg Levo and 18.75mcg T3 and will retest in a few weeks. However, I have other health issues and these have been a problem recently and this may be impacting on what's going on with my thyroid.

[Johnjoe123 in reply to SeasideSusie]

Thank you seasidesusie hope things settle for you. I have some thinking to do but definitely firing yet another endo!

[SlowDragon Administrator]

TSH is nearly always suppressed on T3

Many people need good levels of FT4, as well as FT4 eg around 18 on this range

[Johnjoe123 in reply to SlowDragon]

After surgery my ft4 was 18 for a few months and I felt great, then it fell to 12 and hasn't moved since!

[SlowDragon Administrator in reply to Johnjoe123]

Then you need probably an increase in dose of Levothyroxine to bring FT4 up.

Important to test vitamin D, folate, B12 and ferritin, these are often too low if been under medicated and may need supplementing to improve

Suggest you get these tested

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

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. If also on T3, make sure to take last dose 12 hours prior to test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

Is this how you did the last test?

You might find reading my profile informative on dose, brand variation etc

[Johnjoe123 in reply to SlowDragon]

Thank you I always have bloods done fasting and off meds. My gp tests ft4 and ft3 at my request but alas endo just looks at tsh which I my case has always been suppressed even before surgery!

[SlowDragon Administrator in reply to Johnjoe123]

If you were hyperthyroid before thyroidectomy then it's not uncommon for TSH to be less responsive and suppressed at low levels of thyroid replacement

diogenes has info on this and may add a comment

Yes, many of us on here forced to decide on dose ourselves

FT4 and FT3 are the most important thing to consider, along with vitamin levels

Levothyroxine only leave 24 hours between last toss and blood test

T3 only leave 12 hours between last dose and blood test

[Hidden]

This endo is wrong please don't waste anymore money the only way I got well after my TT was joining this site and posting my private blood results with the ranges.

I also waste over £2000 never again.

[Johnjoe123 in reply to Hidden]

do you dose yourself based on your results? I am so scared of doing it myself but think I need to after endo wanting me to reduce to 75 levo!

[Hidden in reply to Johnjoe123]

Before my TT I wasn't on any medication to having to learn about the thyroid was difficult. I was started on Levo and was on this for around 7/8 months and whatever dose I was on it didn't agree with me and I felt so ill I was also gaining weight which I had never done before.

I then joined this site and sought answers I was encouraged to do a Blue Horizon blood test (thyroid plus 11) I followed the advice and posted the results for people to help. I now self medicate with NDT apart from the odd hiccup I am fine.

I know that I will never feel exactly the same as before the op but strive to help myself stay well.

I did waste money trusting to GP's and Endo's but they took my money and that is about all they were efficient at doing.

[Hidden]

I forgot to answer your question sorry. I source the NDT myself online and asked on this site how to start. I started with one half of a grain i.e. that is one half of a tablet. I then increased every 10/14 days with another half and so on.

I got to the point where I was taking three tablets per day for around 6/7 months this was last year, however when I did my yearly blood test my FT3 was well over the top range I am now taking 2.5 per day.

There are signs too, when I was taking 3 tablets per day I was losing too much weight and sometimes my heart pounded. I have a blood pressure/heart rate monitor at home which I bought and now test every 3 weeks.

If you do take the thyroid plus eleven it will give you all of the results you require Vit D, Folate, B12, Ferritin as well as the usual TSH, T4, FT3 also antibodies.

I never knew about low Vit D and since increasing this to optimal levels I haven't had my sinus problems for the first time in years, it's amazing!

[Johnjoe123 in reply to Hidden]

Thank you so much for all that information, I really appreciate you taking the time. Stay well!