Refused dose increase today: My Levo dose was... - Thyroid UK

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Refused dose increase today

Kizzygirl profile image
12 Replies

My Levo dose was reduced at the beginning of the year based on my TSH. As expected I have had severe symptom return, the worst has been dreadful constipation and fatigue, crumbled nails and low mood. I have struggled badly for 4 months now.

This morning I saw a new and young GP who I hoped would agree to a return to my previous dose. No luck, in fact he wanted to reduce further! His reasoning is that a suppressed TSH will give me dangerous atrial fibrillation. He wasn’t convinced by my evidence and we agreed to differ. I’m now in a worse situation and facing further dose reduction.

Latest blood results are

TSH 0.174 (0.27 - 4.20)

T4 17.5 (12 - 22)

T3 3.44 (3.10 -6.80)

TPA 346 (0 -34)

I probably now need to seek an endocrinologist opinion, GP says that is the only way he will reconsider.

Any advice as to how I should proceed?

12 Replies
Slabs profile image
Slabs

Clinically speaking, there is little chance they will further reduce your dose when your TSH is already suppressed to such a degree. An endocrinologist is likely to make the same determination. Have you considered advocating for adding liothyronine to your levothyroxine?

greygoose profile image
greygoose

Your problem is not so much that you are under-medicated, but that you are a poor converter. Increasing your levo will do little to change that. Your FT3 is right down at the bottom of the range. You really do need some T3 added to your levo, but your chances of getting that are pretty slim in the present climate.

The only thing I can suggest is that you buy your own T3 and self-treat with it. However, you should be aware that T3 will reduce your TSH even further, so you will always have a battle on your hands with your unenlightened doctors.

You could try seeing an endo - but chose your endo wisely! - to see if you can convince him of your poor conversion, you never know your luck! But I think you need to consider self-treatment as a back-up plan.

shaws profile image
shawsAdministrator

I agree wholeheartedly with greygoose by going our own way we recover with the help/advice on the forum.

When doctors' spout fairytales, its tme to take our own health into our own hands. We need far more doctors like the following but they are now a dying breed due to age and retirement and the new doctors untrained about essential hormone replacements due to Big Pharma who would lose money if patients recovered their health.

Excerpt:

Because it still clings to the old disease-based Reference Range Endocrinology, and because of pharmaceutical corporation and FDA corruption, endocrinology is an ineffective, moribund specialty, dominated by hormone myths. Indeed,

all of medical practice is now essentially a pharmaceutical disease-drug scheme. Medicine requires an entirely different conceptual foundation: it should first and foremost try to find the biomolecular causes of all symptoms and disorders, and should

attempt to fix the problems by addressing the causes. In many cases all that is needed is to optimize the amounts and balance of important natural molecules--among them hormones and vitanutrients. I call the new endocrine paradigm "Restorative

Endocrinology". See my E-book for much more detailed information and advice.

Kizzygirl profile image
Kizzygirl

Thanks to you all for your advice. I suspect that I am about to begin a journey into self treatment, there doesn’t seem to be an option if I would like to remain well, symptom free and able to function effectively in the world.

Judithdalston profile image
Judithdalston

Looks like some T3 would help you....unfortunately your Gp would find the resulting low TSH rather alarming...have you considered DIY, I, like many forum members, get our T3 from abroad?

Kizzygirl profile image
Kizzygirl

Judith, my GP won’t consider other viewpoints and is adamant that a suppressed TSH is very dangerous. Perhaps he is correct? It’s confusing and worrying!

I have no idea how I would go about sourcing T3 though, I’ve been told by GP that it would not ever be prescribed for me in the UK

onda2018 profile image
onda2018

Hy, I have found an app Thyreocal, that contains a TSH, FT4/3 Calculator. It has been created in Germany and used by many members of German self-help groups as a basis for discussion.

FancyPants54 profile image
FancyPants54 in reply to onda2018

What does the app do?

onda2018 profile image
onda2018 in reply to FancyPants54

You can log your thyroid lab results and indicates if you are hyper or hypo, and if there is good/bad conversion from FT4 to FT3. I haven't tried it yet, so you will have to try it for yourself. I hope this helps as a basis for discussion with a doctor.

FancyPants54 profile image
FancyPants54 in reply to onda2018

I downloaded this and just tried it out. It said my TSH was "slightly" elevated at 7.3. There wasn't an option to add the reference range for TSH which I thought odd. I think 7.3 is more than slightly elevated for someone on treatment.

I'm not sure I understand. It seems to be saying that I don't have a thyroid problem.

"Your relative values ​​are 13.16 percentage points apart. This can have different causes that should be clarified.

Your TSH is slightly elevated, which may indicate latent hypothyroidism. The values ​​of the free thyroid hormones give the following picture:

Your relative fT3 score is 37.84% in the middle range.

According to the lab findings, your relative fT4 value is in the golden middle at 51.00%. There is no clinical thyroid dysfunction, but persistent symptoms are not uncommon. The so-called feel-good area lies in the upper third of the relative values.

If you are already receiving treatment for thyroid disease and are still experiencing discomfort, talk to your doctor about how to fine-tune your medication or if you need to change your medicine."

SlowDragon profile image
SlowDragonAdministrator

Have you had vitamin D, folate, B12 and ferritin tested?

I see you are supplementing vitamin B complex

Getting all these vitamins optimal is first step

Then if FT3 remains low getting T3 prescribed is possible

Roughly where in the UK are you?

Thyroid Uk has list of recommended thyroid specialists, some will prescribe T3

New NHS England Liothyronine guidelines November 2018

sps.nhs.uk/wp-content/uploa...

Dossier presented to Lord O'Shaughnessy November 26th

drive.google.com/file/d/1c2...

Professor Toft recent article saying, T3 may be necessary for many, otherwise we need high FT4 and suppressed TSH in order to have high enough FT3

rcpe.ac.uk/sites/default/fi...

Getting DIO2 gene test can help in arguments for prescribing....assuming you test positive

DIO2 gene test article

thyroiduk.org.uk/tuk/testin...

bluehorizonmedicals.co.uk/t...

thyroiduk.org.uk/tuk/testin...

Kizzygirl profile image
Kizzygirl

My vits and minerals were reasonably ok when I tested at the beginning of the year.

I am in Kent and I have downloaded the list of sympathetic endos. I can see from the list that there is someone in Maidstone who I may consider.

I’ve found all the info on here so helpful. Sadly my surgery won’t even agree to look at any of the published research papers, I print copies and offer to leave them with the doctor to peruse but they just hand them back, unread!

Thank you for your help

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