Experiment to switch from Metavive to levothyroxine

[Guineapiggy]

On 23rd September 2022 I started to gradually introduce levothyroxine and reduce Metavive until I was on only levo to see if I could manage on this alone. [see post Raising TSH from 11 months ago]. I had hoped to see if I converted T4 to T3 adequately but had to do it myself as my GP wouldn't help with this whilst I was on Metavive with depressed TSH. The idea was that if my conversion was adequate and it raised my TSH a bit, then I could just go back to NHS levo prescriptions. My latest results seem to indicate that my conversion is pretty poor. [Hope the chart is legible].

The last levo dose of 112 mcg [started on 24 June] has taken me above the range with still poor conversion. During this time I have not felt dreadful but definitely am more tired and have less energy that when on Metavive.

I have an appointment with my GP on the 23 Aug and I feel there are various options:

1. I can stay on levo a bit longer [probably reduced to 100 mcg to bring in range] and see if things gradually settle down and I can improve [at the risk of even lower T3]. Perhaps being on levo only 2 months is too soon to really decide. I can put up with the tiredness if it will gradually get better.

2. See if she will start a trial of liothyronine or refer me to an endo to do this [but I think Chichester endos are not so helpful or resistant in prescribing T3 but perhaps now the price has come down they might].

3. Go back to Metavive which gave me a lot more energy.

My concern is that some posts have stated that TSH is needed for converting T3 to T4 in the tissues and Metavive does cause suppression. However, I want to feel well, and not tired, so the suppression may be necessary in order to do this.

I did have the Medichecks Advanced Thyroid Blood Test to make sure the vitamins and ferritin were OK. The folate result failed but has always been fine in the past.

Inflammation: CRP HS 0.859 mg/L (Range: < 3)

Iron Status: Ferritin 198.00 ug/L (Range: 30 - 650)

Vitamins: Folate - Serum ! Sample error, Vitamin B12 - Active 148.0 pmol/L (Range: 37.5 - 188),

Vitamin D 159.0 nmol/L (Range: 50 - 250)

Thyroid Hormones:

TSH X 0.101 mIU/L (Range: 0.27 - 4.2)

Free T3 3.9 pmol/L (Range: 3.1 - 6.8)

Free Thyroxine X 24.0 pmol/L (Range: 12 - 22)

Autoimmunity:

Thyroglobulin Antibodies 41.30 kIU/L (Range: 0 - 115)

Thyroid Peroxidase Antibodies X 53.5 kIU/L (Range: 0 - 34)

I would appreciate any comments about all this and the best way to approach my GP. Is it a good idea to persevere a bit longer with just levo first as I haven't been on it long enough?

[TiggerMe Ambassador]

With your latest result it confirms that you are a bad converter and unlikely to feel well without adding in some T3... have you tested your DIO2 Gene? Perhaps you could stay with NHS levo and add a little T3 rather than the expense of metavive?

I think you are right the Chichester is in the hostile to T3 zone but your results should get you a referral to an Endo...

Your 11 Aug 2022 T3 was only 32% on metavive and bobs up and down with both treatments... are you hashi and dealing with flares?

[Guineapiggy in reply to TiggerMe]

Thanks for answering. I don't think it's Hashi. The antibody tests are slightly elevated but I did read that you can get some elevation without it being an autoimmune problem and can be stress-induced. I know that my cause was very long-term stress. I don't think I have any flares.

My 23andMe test did say I was a poor converter but many years ago when I started levo it worked well. I wonder if my body can improve by trialing the levo for a longer period.

It would be nice to try T3. If my GP can't or won't be willing to try it I will ask for an endo appt but I'm not optimistic about the outcome. If T3 usually suppresses TSH then I expect the same reaction as with the Metavive, that I'm overmedicated, and my GP didn't even look at my T3 levels!

[TiggerMe Ambassador in reply to Guineapiggy]

You look like you have all the right things in place to be able to convert if your body is able too... metavive is a bit hit and miss as you have no declared levels to go on, so you might be taking the same dose but when you change bottle it's likely to vary...?

The good thing about T3 tablets is you can be confident in the strength

You are in the cr@@py position that a lot of us get to knowing that you need T3 but the system isn't going to work for you... I bought some T3 whilst waiting for the referral and met my NHS Endo having been 'trialling' T3 for 4 months so I had a pretty good insight into the difference it made... I was lucky and it is now prescribed but not necessarily the best brand for me... those are the limiting factors of the NHS.

Your recent test should allow you to get the referral approved and keep your current T4 prescription, whilst you are waiting I'd go experimenting... Guineapiggy by name... 😁

If the Endo is a complete duffer you at least won't have wasted time as you'll have a good insight by then if T3 is going to work well for you 😉

edit... I should add that my TSH is very low but fT3/4 in range so I totally refuse their attempts to lower anything

[Guineapiggy in reply to TiggerMe]

That's my feeling about the TSH, that the T3 and T4 are in range. I have just reintroduced some Metavive and lowered my levo whilst waiting for my Wed appt to see if I feel more alert but may have to change it again depending on what the GP is prepared to do. I would like to think that we can work together.

Please can you PM me with where I can buy T3 privately (and cheaply) I understand that it can be bought in Europe for a lot less than here. If the GP won't or can't prescribe it perhaps she may be willing to prescribe the T4 if I fund the T3 so I can do the same as you and give it a go. Trouble is, if my TSH stays depressed she is likely to say I'm over-medicated again and not co-operate. I can but try!

[TiggerMe Ambassador in reply to Guineapiggy]

I wouldn't mention your intention to self trial T3 unless they are up to speed and behind you or they might just get narky that you are going over their head

[Guineapiggy in reply to TiggerMe]

I was thinking of asking first if she was happy for me to try if she was not allowed to prescribe it. It may backfire but I would like to give it a go.

[TiggerMe Ambassador in reply to Guineapiggy]

Worth feeling your way.... there are some good ones out there who actually read a bit about thyroid conditions 🤞though she couldn't prescribe if she wanted too.... it's often handy if they have family or friends with thyroid issues 😉

[Guineapiggy in reply to TiggerMe]

Many thanks for all your help.

[SlowDragon Ambassador]

What vitamin supplements are you taking

As you have Hashimoto’s are you on gluten free/dairy free diet

Definitely get Dio2 gene test

Consider getting T3 prescribed alongside levothyroxine

List of thyroid specialists and endocrinologists who will prescribe T3

healthunlocked.com/thyroidu...

[Guineapiggy in reply to SlowDragon]

Thanks for the link. My Dio2 gene does say I'm a poor converter but I also believe gene expression can be influenced by other factors such as lifestyle. As in my above reply, I'm sure my condition was stress induced and may not be autoimmune.

I take methylated b vets in a multivitamin zinc, magnesium, seleniumand vit d.

[Guineapiggy in reply to Guineapiggy]

I did try strictly gluten-free for 6 months but was unaware of any change or improvement.

[Guineapiggy in reply to SlowDragon]

I wish I could remember who it was but, a health and fitness coach did a trial where he exercised intensively for a period and his antibodies then went above the ranges. It was interesting because it hypothesised the possible connection between the antibodies and stress, where the antibodies were increased as a means of slowing the thyroid to make the body rest. It just seemed to resonate with my position and I would love a trial to be done on the effects of stress on the thyroid hormones and antibodies.

[helvella Administrator]

Remember, lots and lots have high or low TSH on levothyroxine monotherapy.

Screenshot of post by Dr Pete Taylor of TSH on LT4

[Guineapiggy in reply to helvella]

Thanks. I'll show this to my GP if I can persuade her to look at it!

[Hidden]

Hi Guineapiggy , I love all your data

Have you considered lowering your T4 slightly and taking metavive with it?

Personally I would need liothyronine because metavive would not be strong enough for me, but if metavive helps you then I would go with what you know works.

I wouldn’t worry a jot about suppressed TSH. TSH goes stimulate conversion, but it’s not solely responsible for that process.

[Guineapiggy in reply to Hidden]

I was using both when weaning off the Metavive. It is a case of finding the best ratio for me. I'm not greatly worried about the suppressed TSH. I would rather feel awake with more energy!!

[Hidden in reply to Guineapiggy]

Maybe trial increasing the metavive and decreasing the T4.

[Guineapiggy in reply to Hidden]

I did start to do that yesterday just to see if I felt better while waiting for the appt on Wednesday.