Pushed to an Endo consult as my TSH is suppressed- some reminders/advice pls.

[shambles]

Once a regular contributor in the early days of thyroid UK, I have hobbled along until now when my GP is passing me back to see endo over the usual suppressed tsh and wanting to reduce my dose.

My history is I had a total thyroid removal in 2010 due to Graves' and had severe thyroid eye disease leading to 7 operations.

I was originally on 150mcg after the operation and it has been downsized over time to 112mcg over 15 years which is not too bad but:-

In the 15 years my tsh has always been from 0.01 to .09 (usual UK range)

My T4 around 26 which is over range and they won't allow that now and feel best at around 27

My T3 is falling badly, last measure 6 weeks ago at 3.5 (3.2-6.7)

My heart rate monitored on ECG 4 weeks ago was 47 and after each operation on my eyes the doctors ask if I forgot to take my thyroid meds.

My BP is low at average 50/70

All my vitamins and minerals are pretty good. I do have a folate issue and I supplement and test.

I had what I think was an anxiety issue or hypertension issue in January were I ended up with BP 89/210 and they couldn't get my BP down, so they kept in for 24hrs before it returned to low and I checked myself out. Since then BP has be low again

My endo will say this episode was because I'm hyper, he will say my T3 is low because my tsh is suppressed. What should I say?

I have both DI101 genes which I believe relate to poor conversion.

I have recently had urine, saliva and 9am cortisol, all in range but mother had Addison's.

I need reminders of what to say to the endo so not to reduce my medication. The GP surgery keep stopping my meds until I blood test or see a GP. I have written a letter of complaint but that has not really helped.

I am going down a dark path, my T3 falling to low and the NHS are trying to lower it further.

Any advice would greatly appreciated.

Thank you.

[Buddy195 Administrator]

Have you ever tried combination treatment shambles (ie reducing Levo slightly/ adding a small amount of Liothyronine)? This treatment was actually recommended to me by a TED specialist ophthalmologist (I was diagnosed mild/moderate TED with Hashimotos rather than the more typical Graves). With my FT4 not being as high in the range on combination treatment, I’ve found this reduced incidents of palpitations/ fast pulse etc.

[shambles in reply to Buddy195]

I have asked and been refused T3 but my ophthalmologist did suggest T3 but my endo said no!

My pulse is 47 on waking! I sometimes wonder if my heart will stop when I sleep!

Thanks for this.

[pennyannie]

Hello Shambles -

I too am with Graves but had RAI thyroid ablation back in 2005 :

My TSH never recovered and has been stuck down low / suppressed at 0.01 since 2005 and on T4 monotherapy to have a decent level T3 I needed my T4 at the very top of the range.

My doctor was not concerned about my TSH until I turned 65 and then I faced dose reductions on T4 and when my TSH came into the range I was the most ill I've ever been in my life - details on my Profile page -

Finding and reading up on this forum I then asked for a referral to endocrinology -

I had to pay the NHS Laboratory for my own T3 and T4 blood test only to be told in 2018 that I was over medicated with a T3 at just 25% with a T4 at 110% through the ranges -

I was told I was lucky to have ' any T3 ' at all and the hospital refused my request for either a little T3 making a T3/T4 combo or Natural Desiccated Thyroid and that I was over medicated and my dose of T4 needed reducing.

I decided to self medicate and now have my life back and much improved.

With a T4 over range and a T3 so low the obvious solution is to reduce the T4 a little and add in a little T3 to rebalance your thyroid hormones -

but treatment options on the NHS have become something of a postcode lottery and you face the wall for questioning ' anything and especially the why ' :

If you go into openprescribing.net you can see by surgery and ICB area how supportive your surgery and local area are compared to others :

Just enter for T3 - Liothyronine - and for NDT - enter Armour - the NHS listed brand.

I found Elaine Moore's books and website on Graves the most well rounded of all I researched - and there is great detail about the TSH being a very unreliable measure of anything and that one must be dosed and monitored on Free T3 and Free T4 results and ranges - but neither my doctor nor endocrinologist were listening to me -

web.archive.org/web/2024122...

thyroidpatients.ca/2020/04/...

Obviously if you can afford to go privately you will find a very different landscape and Thyroid UK - thyroiduk.org now hold a list of recommended NHS/Private thyroid specialist who are understood to be sympathetic and understanding of patients health and well being.

[shambles in reply to pennyannie]

Again, this is exactly what I needed.

Sorry and sad for your challenges 😔

[pennyannie in reply to shambles]

The TSH reading relies on the feedback loop of the Hypothalamus - Pituitary - Thyroid being complete -

after a medical intervention one's physiology is changed -

there is not a Thyroid in situ any longer and this circuit loop now open ended and your HPT axis is broken / down regulated and not a reliable measure of anything.

Graves Disease is an Auto Immune that can wax and wane throughout your life - and generally triggered by stress and anxiety -

without a thyroid in situ it is of no consequence as your own power supply - the thyroid - is not there - so this alone discounts the importance placed on TSH readings.

What makes Graves unique - the abs can be Blocking or Stimulating or Neutral at any given time circulating in your blood stream and there is no way of removing the abs from your blood and will distort a TSH reading -

The only reason Graves gets diagnosed is because these abs get stuck on the fine hair follicles of the TSH receptors within your body - which then collectively push down the TSH which in turn pushes up thyroid hormone production - and you end up at the doctor with symptoms and diagnosed Graves Disease .

Once the thyroid is removed - the TSH may still be suppressed - it is of no consequence as you haven't a thyroid any longer and your internal power supply - your thyroid is now in a bucket.

[shambles in reply to pennyannie]

Printing and taking it with me this morning. Clever. Will have to read a few times to absorb. Thank you.

[pennyannie in reply to shambles]

I'm afraid if you are in an area where the financial restraints are such that hospital staff are forced to work to a balance sheet rather than patient need - you will face the wall and not be considered as saying anything of any consequence.

I find it upsetting that even with an ophthalmologist confirming your need for a higher level of T3 you may find yourself declined time, empathy and understanding.

It is quite ironic really as Graves is stress and anxiety triggered and the longer I stayed in the system the more upset I became -

Self medicating can actually be liberating.

A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg -

T3 is the active hormone that runs the body and around 4 times more powerful than T4 - why if nothing else - can't the NHS replace your T3 - as they have your T4 ?

Ideally best to replace like with like ?

The fullest spectrum thyroid hormone replacement is Natural Desiccated Thyroid - leading brand Armour - and this is now much more expensive and blacklisted to ' new patients ' - Desiccated Thyroid is the original treatment for hypothyroidism, successfully used for over 100 years and derived from pig thyroids dried and ground down into a powder and made up into medically graded tablets and capsules and contains all the same known hormones as that of the human thyroid gland - trace elements of T1. T2 and calcitonin + a measure of T3 and T4 in each tablet. - I buy my own and self medicate.

[SlowDragon Administrator]

Roughly where in U.K. are you

There are increasing numbers of endocrinologists who will prescribe small doses of T3 alongside Levo

Which brand of Levo are you using

Do you always get same brand at each prescription

Do you test as recommended early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

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

Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists who will prescribe T3

Ideally choose an endocrinologist to see privately initially and who also does NHS consultations so that might eventually transfer to getting T3 on NHS

thyroiduk.org/contact-us/ge...

[shambles in reply to SlowDragon]

Thanks for the doctors list.

I'm in N Yorks. My NHS GP also works privately and has a fairly good understanding of the situation. She referred me to York hospital but in the past I have never had any success with the notion of T3 or even accepting a suppressed T3.

My ophthalmologist had said to keep my tsh suppressed to help with my eyes and was the only reason they didn't reduce my T4 meds more. He also suggested me taking T3 but the endo refused!

Test wise I miss 2 days (take them immediately after the test) to reduce my T4 to 19. Always test early. Take the same brand around 4am with water. I test medichecks without skipping and it come back at 24 -27.

[ainslie in reply to shambles]

Can I ask you how keeping TSH suppressed helps with eyes

[shambles in reply to ainslie]

I honestly don't know! Sorry

[SlowDragon Administrator]

Having had suppressed TSH because of Graves’ disease your TSH may NEVER rise

Why TSH is sluggish - mechanism called 'Hysteresis'.

healthunlocked.com/thyroidu....

starts at the end of the first reply from Tattybogle : " To understand why TSH stays suppressed for a long time after an episode of hyperthyroidism/ overmedication, (or ANY T3 use) has finished... "

and is continued in detail much further down in another reply from me : " CONTINUED HYSTERESIS ~ Why TSH remains lower for quite along while following episodes of hyperthyroidism / overmedication .... (or any T3 use) , it is due (at least partly) to a mechanism called 'Hysteresis'.

Your TSH is not responding to low Ft3

[shambles in reply to SlowDragon]

This is perfect. Thank you.

[greygoose]

My endo will say this episode was because I'm hyper, he will say my T3 is low because my tsh is suppressed. What should I say?

Remind him that you can't be hyper because you don't have a thyroid anymore.

And after being hyper for a while, the hypothalamus/pituitary/thyroid axis often becomes down-graded so the TSH will never rise, no matter what you do. And he should be looking at the FT3 - the most important number - and not the TSH, anyway.

My T4 around 26 which is over range and they won't allow that now and feel best at around 27

You feel best with your FT4 so high because you are a poor converter. If they were to give you a little T3, you wouldn't need such a high FT4 - which isn't good for you long-term, either. But until that happens, you point-blank refuse to reduce your dose.

Don't allow yourself to be intimidated by these people, they know nothing about thyroid. And do have a long, hard think about self-treating.

[shambles in reply to greygoose]

Thanks Greygoose, always get the point i'm looking for.

[greygoose in reply to shambles]

You're welcome.

[BenLabrador]

I was forced to buy T3 privately and to test using Monitor My Health. My GP is happy with my approach and accepts my decision to live with a suppressed TSH. I try and keep my T3 and T4 levels within the ‘normal range’.