Can I justify Armour?

[YoginiDancer]

Without the GP's knowledge (and after advise on here) I came off Armour for a month in order to falsify my results so that the GP would stop getting so upset about my suppressed TSH in the hope that he would continue to treat me with a combination of T4 and Armour which I've been on for 20 years. Following the suggested protocol for the blood draw (coming off B Complex, timing etc etc) I got these results:

T3: 5.1

T4: 14.7

TSH: 0.09

Previously I got these results when I was on Armour:

T3: 5.2

T4: 15.9

TSH: <.02

I was surprised I was able to convert as much T4 to T3. In the past I was told I couldn't convert at all but that was long ago when my knowledge was poor so my memory may not be serving me well but it was the original reason why I was allowed to have Armour on the NHS (I know how very rare this is but it looks like I may be taken off it to please the GP).

On paper, it looks like I could survive on T4 monotherapy (wouldn't that be simple)? Or do you see something different in these numbers? However, after a month without it I was experiencing the following symptoms which would suggest otherwise:

Headaches

Very poor sleep

Blurred vision

Word finding difficulty

Brain Fog

Extreme energy lack, especially in the afternoon

Cold in the afternoon (even in this hot summer)

Wanting food all the time (not the same thing as hungry) to get some energy

When I took the Armour (only one grain) after the torture of the month off my whole vision suddenly improved - the world literally looked more colourful within 20 minutes of me taking it and I immediately slept like a baby. I could speak and think so clearly it was a miracle!

The GP is calling to discuss the results and no doubt will still want me to see an NHS endo for me to continue treatment protocols as they stand so here is my question for you wise beings before I speak to him:

Would you keep quiet about my Armour experiment (since it hasn't proved that I need it for conversion purposes) and explain the new result with the truthful info that I've changed when I take my Levo, that after advise I'm now taking Magnesium in a different format and my Bisoprolol at the opposit end of the day so they don't interfere with absorption, and coming off B Vits a week prior to blood draw so that the results are accurate?

Do you know of any protections for NHS patients regarding removing meds that the patient has been well on for 20 years on ethical grounds? I would not use this as any kind of threat as the GP seems very kind - just lacking in knowledge about TSH suppression which he freely admits (hence the request for Endo back up).

If I go down the route of coming off Armour prior to every blood draw, to perk up the TSH, is a month long enough to see results?

Thank you so so so so so so so so much in advance for your support

[TiggerMe]

A month probably isn't log enough to see if you can do without and it sound like you were already getting symptoms, you might find your conversion gradually worsens over a longer period 🤷‍♀️

Had you previously tried T3 before Armour?

[YoginiDancer in reply to TiggerMe]

Many moons ago yes. I can't remember why I was then put on Armour. However, I do remember the same amazing feeling when I could suddenly see bright colours and everything in clear focus (just as I have done this time going back on to my beloved Armour after a month away from it). It's just like someone has given me new specs. It feels like having a new brain too as the fog lifts and I can speak eloquently!!

[TiggerMe in reply to YoginiDancer]

I'd fight hard to keep the Armour as it works for you and even if you swapped to T3&4 you'd still have a very low TSH and the same silly battle with them 🙄

[YoginiDancer in reply to TiggerMe]

Oh really? That's good to know. I thought it was specific to Armour. It's crazy that GP's are taught to ignore our good health and prioritise making irrelevant numbers add... I serve 250 people each week in the community as a health advisor and keep people away from the NHS doors so it is is very short sighted to make me ill for the sake of a few quid and some outdated old research proved irrelevant donkey's years ago.

[TiggerMe in reply to YoginiDancer]

For many any amount of T3 is going to lower TSH often below where the quacks are happy even though fT3 & 4 levels are within range...

Your results are interesting but not for sharing with GP as they are all about numbers and it's far more about cellular levels that makes us feel well and less about what is swimming around in our blood

[arTistapple]

Infuriatingly (after reading your most recent post) it seems we all could/would do well on T4 monotherapy! Definitely not so!

[thegemprincess]

Its hard sometimes going against doctors. I would breach the subject as follows: I know you have my best interests at heart to bring me to prime health. I am also aware as one ages their body changes. I want an honest relationship so I must reveal something that I am doing now that optimizes my health. May I have your blessings to continue this route please? Ask her permission and share the truth. If she disagrees then unfortunately find a doctor that will work with you . First give her a shot.

[thegemprincess]

I went to a doctor that compounds my T3 T4 in USA so unfortunately can't recommend someone but there are some great doctors out there....check out the internet

[YoginiDancer in reply to thegemprincess]

I will definitely go down the route of paying for my Armour if I can't get it as normal on the NHS as I have for the last 20 years. The GP is fully aware of what treatment I'm on as they have been prescribing at the practice for 2 years. They then had a meeting behind my back and simply cut it off without warning and without telling me. We have a body that monitors GP Spending and I'm sure it's them behind the decision.

There were no clinical indications for it whatsoever but for my life, the decision could have had huge consequences had I a) not got this Forum and b) got the cash to spend on the treatment privately. Neither of which the GP knows, so it was very unethical and dangerous to suddenly withdraw the treatment. It should at least have been done under the guidance of a qualified Endo, especially as the GP freely admits he doesn't understand the condition (and therefore, definitely doesn't understand the process of withdrawal from the drug)

[YoginiDancer]

UPDATE:

A 9 page formal complaint went into the GP surgery on Friday. I've had no reply yet. It was accompanied by my last 15 years of Thyroid Test Results and a one page explanation of why TSH is suppressed in patients taking NDT in particular. If anyone would like to see the letter, feel free to PM me to use for your own case (it's too long to copy into a post).

It basically covers the ethics of withdrawal without informing me or discussing it with me (I found out by that it wasn't on my regular prescription list when I went to order only); the removal of a medication from a well patient after 20 years without supervision of an endocrinologist and going against advice from a previous NHS Endo; their lack of concern for the side effects of immediate withdrawal from a medication that has kept me well and working; the dangers of using TSH as a guideline and in my specific case ie if the worry is about osteopaenia and cardiac issues, to look at the patient (body building, aerobics teacher using weights in several classes per day with perfect Dexa scores).

I politely requested that the team reconsider the withdrawal at their meeting and continued to prescribe until I see the new NHS Endo. Or at the very least give me some time to source it privately.

[helvella Administrator Thyroid UK in reply to YoginiDancer]

A hearty endorsement of your approach.

A proper, written argument with sufficient evidence which forces an answer seems appropriate. It might take much more to reach a satisfactory end-point, but you have to start somewhere.

[arTistapple in reply to YoginiDancer]

Whilst I am not in the same position as yourself, I would very much like a copy of your complaint. My situation is a lot more foggy but any tips I can pick up from your absolutely rightful complaint, I will be happy to learn from. Can’t help but admire your stance. Hope you can get through that utter wall of ignorance you are having to deal with!

[pennyannie in reply to YoginiDancer]

Well done you and how kind to offer copies of your letter to those too ill to even be able to string a sentence together, let alone write a letter, as their health already compromised by not being on the most appropriate thyroid hormone replacement,

It is absolutely deplorable - I'm self medicating NDT having been denied any treatment option and with Graves post RAI thyroid ablation - and became more unwell some years later and received no help nor understanding of the consequences of drinking this toxic substance and referred to as a conundrum :

I had to stay away to get better myself and am much improved as to how the NHS would have me.

Here is a link to the most recent research and you have to ask yourself - why is RAI still a first line treatment in what we believe to be a health care setting ?

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