Thyrotoxicosis

[ldchris23]

Good Morning, Could some on please advise on the following I've had the above condition and have been on Carbimazoles - 20mg for the last 5 months. I've noticed that with taking my medication daily i am getting back into a better place. I've subsequently went to get my bloods checked on the 31/10 and have the following reading :- Serum TSH level 7.58 miU/L (0.35 - 4.94). I can clearly see that this is above the tolerance band and trying to get an appointment with my GP to understand what the next step actions should be. But, as you clearly know trying to get an appointment these days is so difficult. So, any assistance from the family / group would be really appreciated

[helvella Administrator]

Although only testing TSH is woeful, it appears your thyroid hormone levels have dropped too far.

You really need to do something now as it will get worse if you don't.

The most likely first step is to reduce your carbimazole. Make sure you get 5 milligram tablets prescribed (assuming you don't already). They are available and quite low cost. Some makes of Carbimazole say they must not be split.

You also need Free T4 and Free T3 tested.

pennyannie

[ldchris23 in reply to helvella]

So have found out additional data from blood sample - Serum Free Triodothyronine level is 3.6 PMOl/L (2.4 - 6.0). Serum free T4 Level 8.5 PMOl/L (9.0 -19.0). Haemoglobin concentration - 154g/L (130.0 -180.0) Total While blood count 5.50 10*9/l (4.0 - 11.0) Red blood cell count 5.07 10*12l (4.5 - 6.5)

[helvella Administrator in reply to ldchris23]

I completely agree with PurpleNails

Do NOT let it ride because you feel good right now.

In my view, people on anti-thyroid medicines should always have a blood test form in their hands. (Or whatever works with the systems in your area.) And, when a drop in thyroid hormone levels is seen, be able to have an urgent appointment to decide what to do.

This drop in levels is what the doctors are, in effect, doing to you. You have to be able to tell them "Stop! Enough. No more."

[PurpleNails Administrator]

Your levels needs to be regularly rechecked & dose adjusted to keep from going abnormally low or high.

Initially this should be 6 weekly. Check with Dr, likely dose should be reduced to 10mg. Then retest in 6 weeks.

Were TSI or TRab tested to confirm Graves?

[ldchris23 in reply to PurpleNails]

So have found out additional data from blood sample - Serum Free Triodothyronine level is 3.6 PMOl/L (2.4 - 6.0). Serum free T4 Level 8.5 PMOl/L (9.0 -19.0). Haemoglobin concentration - 154g/L (130.0 -180.0) Total While blood count 5.50 10*9/l (4.0 - 11.0) Red blood cell count 5.07 10*12l (4.5 - 6.5)

[PurpleNails Administrator in reply to ldchris23]

Those Frees are now very low. You definitely need a dose reduction. Ask doctor if you can reduce to 10mg. & arrange to retest in 6 weeks

[pennyannie]

Hey there again :

We are still waiting on your initial blood test results at diagnosis along with the antibody found positive in your bloods -

Do you have online access to your medical records and can scroll back and find this crucial information to share with forum members so we know what you have been diagnosed with and better able to help you ?

To be treated with an Anti Thyroid drug I presume you are being seen as having Graves Disease and you should find positive over range readings stating TRab - a Thyroid Blocking ab or TSI -a Thyroid Stimulating ab - or maybe reading as a TSH Thyroid Receptor ab - all with single number results and cut off levels.

Graves is an auto immune disease that generally only gets diagnosed when the immune system ends up attacking the thyroid and or eyes - both vital organs and glands.

With Graves you can have either Blocking or Stimulating antibodies at any given time in charge of your thyroid and these can present as extreme opposites of symptoms - sometimes they switch from Blocking to Stimulating and visa versa and given enough time can burn each other out leaving the patient relatively normal having been on a roller coaster of symptoms without any of the fun.

There is no cure for an AI disease and Graves is considered life threatening if not medicated - and the treatment an Anti Thyroid drug - either Carbimazole or Propylthiouracil - PTU :

All the AT drug does is ' buy you time ' and semi-blocks your own new daily thyroid hormone production while we wait for your immune system ' to calm back down ' and hopefully your thyroid restore itself without the need for any drugs.

You should receive follow up blood tests every 6-8 weeks and as your T3 and T4 levels start to fall back into the ranges the AT drug is reduced otherwise you risk your T3 and T4 falling too far through the ranges and causing the equally disabling symptoms of hypothyroidism.

Ideally a skilled endocrinologist / medical professional will try to put you in a holding position where your T3 and T4 stay at around mid point in the ranges - and where you should have the least symptoms to tolerate while we wait for your immune system to calm down again.

The NHS allocate a treatment window of around 15-18 months with an AT drug with the hope being this rime span ' long enough ' for your immune system to calm and tend to encourage definitive treatment if you don't ' find ' remission.

We do now have some research you might like to read :

pubmed.ncbi.nlm.nih.gov/338...

ncbi.nlm.nih.gov/pubmed/306...

The most rounded of all I researched is that of Elaine Moore - books and now website - elaine-moore.com

As to your immediate question - I would suggest reducing your AT drug to 10 mcg as I'm guessing your symptoms now much more hypothyroid than hyperthyroid -

am I correct - what symptoms do you now have ?

Thyroid UK - thyroiduk.org - have a very thorough list of what constitutes both hyper and hypo symptoms - maybe pop over there and tick box this check list - so you have to hand - information and facts - when you next see a medical professional - which should be like yesterday -

as you need a TSH+T3 + T4 blood test at the very least + the core strength vitamins and minerals as detailed below - immediately:

Have you not had any follow up appointments these past 5 months ?

When metabolism runs too fast as in hyperthyroid or too slow as when hypothyroid the body struggles to extract key nutrients through food no matter how clean and well you eat -

and core strength vitamins and minerals - those of ferritin, folate, B12 and vitamin D need to maintained at good strong levels in their ranges to support you through this phase of ill health - and if not optimal may further compromise your health unnecessarily.

[ldchris23 in reply to pennyannie]

Hi Penny, I'm in a real good place with my health at the moment. I no longer get the hot sweats / flushes and heart palpitations. My food appetite is back up and my energy levels are much better. My ankles are no longer swollen and starting to get back into the gym. So, you are saying that i should take half a tablet per day and not a full one?

[pennyannie in reply to ldchris23]

I'm glad you are feeling so well !!

With a TSH so high I imagined you were very hypothyroid - maybe you are not -

Without a T3 and T4 blood test - I do not know - I am not a doctor -

all I know is I would be very unwell with a TSH over the range :

If you feel you are in a really good place now - stay put - change nothing -

But you do need to get a full thyroid panel to include a TSH + T3 + T4 + inflammation, antibodies and ferritin, folate, B12 and vitamin D :

Can you please furnish us with the initial blood test results and ranges along with the antibody reading that was a positive and what was your diagnosis and the reason you were put on an Anti Thyroid drug:

[ldchris23 in reply to pennyannie]

Ok, i will get you all that data and thank you again for your help and assistance. Just struggling with the WFI at work and therefore will do it tomorrow morning. x

[ldchris23 in reply to ldchris23]

I do recall when looking at the NHS app all the other results were normal bar this but will share that data with you. x

[ldchris23 in reply to pennyannie]

Ok, let me get the initial report and will send that back to you. xx

[pennyannie in reply to ldchris23]

Please don't worry - when ready just scroll back through to the beginning of your treatment and you should see your initial blood test results and just type in the TSH - T3 and T4 results and ranges - and which ever antibodies were found in your bloods at diagnosis - likely written as a TPO - or a TgAB - or a TRab - or a TSI - or a TSH Thyroid Receptor ab :

Maybe you even received a letter detailing your diagnosis - so the information all there :

[ldchris23]

Good Morning Penny, So have found out additional data from blood sample - Serum Free Triodothyronine level is 3.6 PMOl/L (2.4 - 6.0). Serum free T4 Level 8.5 PMOl/L (9.0 -19.0). Haemoglobin concentration - 154g/L (130.0 -180.0) Total While blood count 5.50 10*9/l (4.0 - 11.0) Red blood cell count 5.07 10*12l (4.5 - 6.5)

[pennyannie in reply to ldchris23]

I'm presuming this message is for me ?

I found it by accident - please ensure you use the Reply icon within the other forum members post - so their name comes up as you start your reply as then they are notified they have message and will reply -

Your TSH is high over the range as your T4 is below the range and your T3 at just 33% through its range :

T4 is converted in the body into T3 - and currently you do not have enough thyroid hormones circulating in your blood stream to maintain and continue as well as you are -

and you ' look ' to be running on ' empty ' and think you need a pit stop - in the guise of either your endocrinologist or doctor.

Please confirm the antibody readings and ranges along with the initial TSH, T3 and T4 blood test results and ranges at diagnosis.

[ldchris23 in reply to ldchris23]

Hi Penny, So have found out additional data from blood sample - Serum Free Triodothyronine level is 3.6 PMOl/L (2.4 - 6.0). Serum free T4 Level 8.5 PMOl/L (9.0 -19.0). Haemoglobin concentration - 154g/L (130.0 -180.0) Total While blood count 5.50 10*9/l (4.0 - 11.0) Red blood cell count 5.07 10*12l (4.5 - 6.5)

[pennyannie in reply to ldchris23]

I have already replied to the above details :

please scroll back up and read your post from 3 hours ago which I replied to around an hour ago.

[ldchris23 in reply to pennyannie]

TSH level is 7.58 and T4 level is 8.5. I dont have any details on T3.

[PurpleNails Administrator in reply to ldchris23]

“Serum Free Triodothyronine level is 3.6 PMOl/L (2.4 - 6.0)” this is your FT3 level.

[pennyannie in reply to ldchris23]

You do have them - you typed them in above

T3 is ' serum free triodothyronine ' and it was 3.60 :

I've replied above 1 hour ago :

[ldchris23 in reply to pennyannie]

Sorry Penny, A little confused and just panicking:-0 x

[pennyannie in reply to ldchris23]

No worries - been there several times - !!

[humanbean]

Serum Free Triodothyronine level is 3.6 PMOl/L (2.4 - 6.0)

Just a random comment...

The lower end of that range for Free T3 (i.e. 2.4) is lower than I think I have ever seen. I would be on my knees with a Free T3 under 4, never mind under 3! When last tested my Free T3 was 6 with a range of 3.1 - 6.8.

I don't know if you know that the NHS manipulates reference ranges to save money, or to achieve other goals. For example, back in the 1990s I had a blood test early in the decade and the range for Total Cholesterol went up to 7.5. The NHS wanted to put lots of people on statins so they reduced the top of the reference range to 5 later in the 1990s. So my test was in range early in the decade and way over it later in the decade. And the change in range meant that well over half the population of the UK had over the range cholesterol for the first time ever.

I wonder if the very low level of 2.4 was set to reduce the number of patients asking for T3 to be prescribed.