medication suddenly stopped

[359Jay]

some advice if I may please - the Receptionist at my Surgery has informed me that my Levothyroxine has been stopped - no conversation with a GP about this whatsoever.

If anything I have been trying to get it increased - it’s only 25mcg but still better than nothing. GP has based their decision on TSH results. As Menopause in full swing I am worried it will make symptoms worse . This is crazy I have been on it since 2018 .

I am taking Metavive but GP didn’t want to discuss at all on a previous occasion .Are we really left to fend for ourselves to this extent .

[Buddy195 Administrator]

My TSH is 1.15 ( 0.27 - 4.2 )

Free T3 5.5 ( 3.1 - 6.8 )

Free Thyroxine 18.1 (12 - 22 )

I understand these were your results a few months ago, but what are the latest results the GP is acting on? You are legally entitled to copies of all tests, so please ask for this.

In your last post, you also mentioned that the endo queried antibodies for Graves. Please do contact the endo’s secretary and ask for a print out of all tests completed privately. Is the GP stopping Levo on the advice of this endo?

Important info on antibody tests:

Graves Disease (hyperthyroidism) needs to be confirmed via positive TRab or TSI:

TRab

TSH receptor antibodies

TSI

Thyroid-Stimulating Immunoglobulin

TPO & TG antibodies may be Graves or Hashimotos.

 TPOab

Thyroid Peroxidase antibodies

TGab

Thyroglobulin antibodies

[Tina_Maria]

The TSH is not a strong indicator of thyroid function and should never be used to guide treatment.

Firstly, I would ring or write to the surgery and say that your treatment should not be stopped suddenly without any consultation with you, and that you do not agree to any changes in treatment if they do not agree to run a full thyroid panel that includes TSH, T4 and T3.

Secondly, I would ask for a print out of your results so you can see why they think you supposedly no longer need the medication (I suspect that our TSH is somewhere in the normal range and as you are on a low dose they think you can do without! Far from it).

As you have tried to get it increased, I suspect that you are still very symptomatic, as 25mcg is a low starter dose and you should have been titrated up over the years to replace your thyroid hormones. A normal replacement dose is 1.6mcg levothyroxine per kg of body weight.

You could do a private thyroid function test checking TSH, T4 and T3, so you can get a better idea where your levels actually are.

However, I feel that the care at your surgery is very below par, so it may perhaps be even better if you could change to a different surgery, if you can?

[359Jay in reply to Tina_Maria]

GP is solely making the decision on TSH result ~ I thought I was in the room with a Robot as he hardly spoke and certainly wasn’t interested in the Metavive

[elaar in reply to 359Jay]

Why would he be interested in the Metavive? Metavive isn't a pharmaceutical product, and isn't regulated/tested. If anything, it's going to distort your Thyroid tests to the point where it's unclear what the Levo is doing, and what the Metavive is doing.

Personally, I'd say there's little point treating you with Levo if you're self medicating with other Thyroid hormone supplements.

Have you tried taking a constant dose of just Metavive for a few months, and had a blood test to check your FT3/FT4 levels?

[359Jay in reply to elaar]

Levothyroxine - it was a Private Endocrinologist that put me on the Metavive - when you have a GP that tells you a Ferritin of 3 is okay - what does 1 do but seek other options

[elaar in reply to 359Jay]

It seems very strange to me that an Endocrinologist would suggest an unregulated supplement, when they have the ability to prescribe exact dosages of T3 and T4 medication.

[pennyannie]

Hello Jay -

Has your T4 been stopped as your doctor knows you are taking Metavive ?

[serenfach]

Phone the practice manager on Monday and ask for your full notes - there may be a letter from your Endo in there.

Then ask in writing the reason for the termination of your Levo. They dont like doing this so you may have to push and say it is your legal right, which it is. They are supposed to work in partnership with you, and it is obvious this is not happening. I would not mention the Metavive at all. Ask if your Levo can be "temporarily" prescribed again until the reason is sorted to your satisfaction. Good luck!