advice please - not so optimal after all 😳 - Thyroid UK

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advice please - not so optimal after all 😳

Regenallotment profile image
RegenallotmentAmbassador
31 Replies

MMH test just in, I’ve been on Aristo 125mcg since mid December and 5mcg compounded T3 for 8 weeks.

FT3 6.8 (3.1-6.8)

FT4 27.7 (12-22)

TSH <0.01 (0.27-4.2)

I have worked hard on gut health so could well be absorbing better.

I have very slowly lost 2 kg over 8 weeks but been super good about restricting treats. and gently increasing activity. The test was 24 hours after Levo and 9 hours after T3. (Which is usually once a day capsule so tricky to split, I did split the day before testing). Chronic ankle pain has vanished, mental clarity better, face has changed shape. Resting pulse 56 basal temp 36.2.

Previous January results on 125mcg Teva for 7 weeks (symptoms of aches, pains, puffy) same ranges.

FT3 4.4

FT4 20.7

TSH 0.12

So a plan please 🙏

Do I drop to 100mcg T4 and restest? 75? I am reluctant to change T3.

Vits last tested in January, am on project ferritin, maintainace D3K2Mag, Thorne Basic B (switched to B12/folate for testing), Optifer Alpha haem iron. Previous results here healthunlocked.com/thyroidu...

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31 Replies
TiggerMe profile image
TiggerMeAmbassador

Morning 🤗 I'd go with a drop in T4 back to 100mcg and see how you go, I didn't adjust my dose of T4 and my fT4 slowly dropped back with the inclusion of T3 but it took several months

Previously 100mcg gave you a nicely in range level and it makes life easy with Vencamil only doing 100mcg tablets 😅

Aurealis profile image
Aurealis

Follow your instinct. Are you saying that you feel optimal, but your blood tests are prompting you to think you’re not?

Were the most recent results and the earlier ones taken under the same conditions (time of day and distance from last dose) if not, they’re not directly comparable

Some of us have had spurious test results from MMH recently and MMH haven’t responded to feedback. I’m not sure that adjusting dose based on MMH test results alone is sound.

TiggerMe profile image
TiggerMeAmbassador in reply toAurealis

MMH did hold their hands up and admit they had a short blip,

I think the reading looks very much as you would expect with a 25mcg per day increase which is a significant amount raising the previous level of fT4 from 20.7 - 27.7

I wouldn't expect such a small inclusion of T3 to knock the fT4 by to much?

Aurealis profile image
Aurealis in reply toTiggerMe

Hi Eeyore100,

The addition of t3 may have led to an increase in t4 as less t4 is being converted but also none is being produced due to suppressed TSH and also t4 dose has been raised.

It is impossible to interpret test results with any reliability when three things have changed (t3, t4 dose and brand). Fair test - change one thing etc

The t3 result is at the top of the range, I agree, but we don’t know if MMH have overcome their problem yet, they haven’t said anything. There are several of us here feel it was a much longer blip that the 36 hours MMH have so far admitted to.

Optimal is so hard to achieve, I believe in enjoying it while you can and definitely avoid being a slave to test results - that’s what got most of us here in the first place :)

If @regenallotment feels that a reduction in t4 is what comes next then fine, but we have to be aware that symptoms might recur, it could trigger ill health, which can in any case be reversed by going back up a dose, it’s just whether this fits with life plans, so definitely a decision to be very carefully made. .

Instinct is all that we have to rely on, the tests are just an extra, that’s my personal opinion.

TiggerMe profile image
TiggerMeAmbassador in reply toAurealis

I agree, just going on my experience which is all I have to offer... 🤷‍♀️

I would think the difference between TSH 0.12 and 0.01 is pretty negligible as already on a full replacement dose of T4?

Above range fT4 is considered worse than lowered TSH so certainly keep tabs on symptoms returning but a decrease in T4 now that fT3 is at a good level would be the way I would go.

I found once I got my fT3 up everything improved and a mid range fT4, as a lot of people find, works well

Regenallotment profile image
RegenallotmentAmbassador in reply toAurealis

apologies error in first edit, previous blood test was on 125mcg Teva so no dose increase in T4 but brand change and gut health improvement.

BiscuitBaby profile image
BiscuitBaby

Hi RegenallotmentI wonder if your symptoms previously were due to teva? I felt awful on teva and it took weeks to recover from taking it. All my results were low? That might mean that dropping back to 100 on a different brand might be a good option? You might drop a little in conversion but you're at the top of your range in t3. I'm really happy for you that your aches are better though! That's great news. I aspire to that.

Can you tell me a bit more about compounded t3?? Not sure what that is.

And how did you improve gut health? I've started taking betaine with pepsin. Not been taking it long enough to notice a change.

Thanks.

Lalatoot profile image
Lalatoot in reply toBiscuitBaby

Don't think the health board could cope with a request for compounded T3 - they can barely manage to ration out the ordinary one!

Compounded T3 is slow release. Compounding pharmacies make the T3 for you according to the prescription - so it is made specially for you. Most folks seem to get it on private prescription though there maybe the odd one that gets it from the NHS. I think McPammy might but not sure. The idea of slow release is that it avoids the peaks and troughs but there is debate on whether this is beneficial or not (if you do a google)

NDT seems to be slower release than levo/lio combo if you want to try slow release. It is to do with the way NDT is absorbed. Diogenes wrote about it:

healthunlocked.com/thyroidu...

BiscuitBaby profile image
BiscuitBaby in reply toLalatoot

Hi LalatootThank you for that. No, don't think the nhs will give me that. They can't even give me an appointment to review me. Had to hound them for a prescription to tide me over till i get my appointment! My 3 m9nth trial has just turned into a year....and I'm not finished yet! 😅Actually, I don't feel the peaks and troughs at all I don't suppose it matters. I didn't get Morningside this time when I picked up my t3. I got SigmaPharm. Hoping it doesn't make me feel worse. Feeling better would be a bonus! It's a beautiful day! 🌞

Lalatoot profile image
Lalatoot in reply toBiscuitBaby

Lovely day - my garden calls. Never let yourself run out. I have a wee stash of Morningside for emergencies like that so just send me a text. Be interested to hear how you get on with Sigma.

I have no links with the endo team now. Once yearly test with GP and otherwise (touch wood) the surgery just keep repeating the same prescription every 2 months.

BiscuitBaby profile image
BiscuitBaby in reply toLalatoot

Thank you. That's kind. I did have a stash till it took the hospital two weeks to sort the prescription then boots couldn't get it! Bang goes wee stash!! I'll keep you posted as to progress of sigmapharm! It's so good that you can enjoy your garden now! So much progress!!

Regenallotment profile image
RegenallotmentAmbassador in reply toBiscuitBaby

ohhh I hadn’t thought of that with the Teva, clever thing thanks for this idea. 🙏🌱

Regenallotment profile image
RegenallotmentAmbassador in reply toBiscuitBaby

On your question about compounded T3 I had a phone appointment with Roseway Labs in London (£30), sent them my January blood test results filled in their thyroid pre consultation forms. Mentioned I had problems with lactose. When the prescription came it was small capsules in a little pot and their own label, no branding.

BiscuitBaby profile image
BiscuitBaby in reply toRegenallotment

Ah OK. Thank you. Lalatoot gave me a good explanation of it as well. Have you tried other t3? Is it better? Your results seem quite good and your symptoms seem better so I suppose that's a silly question. As Lalatoot said earlier I get mine on nhs! Not a chance are they going to do that!!!

Regenallotment profile image
RegenallotmentAmbassador in reply toBiscuitBaby

I haven’t tried any other T3 so no, nothing to compare to.

Regenallotment profile image
RegenallotmentAmbassador in reply toBiscuitBaby

My gut health journey started with Izabella Wentz autoimmune diet, at the same time as being encouraged to go strictly gluten and dairy free here. That was almost 12 months ago.

I read Dr Sarah Myhill Paleo Keto advice on her website and take some pointers from there.

I recently read Supergut by Dr William Davis and have made slight adjustments there.

Keto - I have a previous bad experience pre diagnosis ending up with clinical anxiety and depression and adrenal fatigue after many years of carb dodging. My therapist at the time broke protocol and said ‘do me a favour, eat half a slice of bread occasionally before our next appointment’ he was right. So I’m low carb not no carb. I am GF though but Dr SM’s PK bread made from linseeds is great. I get my carbs from potatoes, Carr, beetroot etc.

To sort out my damaged digestion ( from years of lactose in HRT (it wasn’t needed, a whole other story) and pre DX diet high in dairy and soy) I followed H.Pylori protocols and SIBO/SIFO protocols. I’ve done OVEX worming treatment, NAC, black seed oil, L Carnitine, L Glutamine, Oregano Oil, Turmeric (not all together, this is over months and months with gaps)

Unfortunately I’m on a low budget and all this testing and supplementing is expensive so I didn’t do the gut testing, just went on symptoms which were 100% what you would expect and online questionnaires pointed to.

So what am I now… gluten, dairy, soy, sugar, grain (occasional rice), alcohol and caffeine free. I don’t each much fruit other than blueberries and raspberries the others tend to ferment. Onions and garlic still ferment, but better than before. So FODMAP definitely resonates for me. Work in progress 😬

What do I eat… IW root cause smoothie for breakfast, Supergut homemade coconut yogurt fish and vegetables, meat and vegetables, nuts, seeds, eggs, a bit of 80-90% chocolate at weekends.

New things, I’ve started filtering my tap water for drinking. It’s quite chlorine smelling. After reading Peatfield I’ve bought fluoride free toothpaste.

BiscuitBaby profile image
BiscuitBaby in reply toRegenallotment

That's very interesting. Thank you. Any diets I've tried so far have been awful. Keto made me feel awful and gf did nithing for me. I try and balance what I eat though. I pretty much eat a little bit of everything and see biscuits now as a treat not a necessity! Ive never had to worry about my weight in the past. I was always active and not tired all the time, this in itself made me make better choices. Its too easy to reach for a biscuit when you're tired and at work. I've stopped that now buy i can't quite bring myself to go alcohol free but I limit it to Friday or Saturday night. We'll done you. You've put a lot of work in, you deserve to feel well!! I hope you continue to do so!!

Jaydee1507 profile image
Jaydee1507Administrator

Usually only one thing at a time would be changed and most people need to drop a little Levo when starting T3 so probably dropping 25mcgs Levo might be a good idea. Only small changes at a time.

Weight loss can also affect numbers.

Working on gut health is so worth while.

Regenallotment profile image
RegenallotmentAmbassador in reply toJaydee1507

sorry error in first post it has been one thing ata a time with 6-7 weeks in between.

Jaydee1507 profile image
Jaydee1507Administrator in reply toRegenallotment

That makes more sense. Anyway, most people need to drop a little T4 when starting T3 and your original FT4 was at 87% and when you have the extra bit of direct T3 you don't need as much T4.

Regenallotment profile image
RegenallotmentAmbassador in reply toJaydee1507

thanks that makes sense.

Yeswithasmile profile image
Yeswithasmile

I find different brands give me different levels and I have tried many. Find the key is sticking to the same brand and this means I self source as the chemists lack consistency.

Same dose of Eutirox (old formula) gives me my optimal ft4

New formula (contains mannitol like Teva) takes me way over

Accord takes me a bit over

Synthroid takes me too high too.

Currently tweaking synthroid to find optimal again but it is literally the difference in dose of 50 mcg a week. Strange but true.

I take 10mcg Morningside t3 and it didnt make any difference when I was optimal (I was for about 10 months then I encountered the brand change again).

My advice for what it’s worth is drop very slowly or you could find you are much too low again.

Hope this helps?

Regenallotment profile image
RegenallotmentAmbassador in reply toYeswithasmile

thanks so much for sharing this experience, it is exceptionally helpful. I will make small adjustments and test again. Thanks 🙏

Imaaan profile image
Imaaan

Absolutely thrilled that your free t3 has improved. 🎉🎊🎉Like others have mentioned I would drop the t4 to 100 and see how you feel.

Regenallotment profile image
RegenallotmentAmbassador in reply toImaaan

Thanks for the advice, I’ll try that and test again xx

EchoWS profile image
EchoWS

You could consider not dropping from 100 to 75 but do a combination of 100 and 75 throughout the week for an average dose of 89 - 4x100 + 3x75 divided by 7. (Or 92 - 5x100 + 2x75) It sounds like being higher than 75 helps but if you thought 100 long term concerning averaging to somewhere in between might help. 88 is easily available in the US but not here. Reduction in aches and pains sounds like a good thing!

Regenallotment profile image
RegenallotmentAmbassador in reply toEchoWS

Thanks so much, since having the results I’ve noticed a few signs of over replacement/medication (night sweats, IBS type symptoms, bit jittery but pulse and temperature normal) back to square 1 on allergens/irritants and diet so will take your advice as i titrate down and retest. Family are away for a few days so I have the house to myself and no stress. Hopefully I’ll settle easily 🌱

EchoWS profile image
EchoWS in reply toRegenallotment

Hi again, I missed that you were actually taking 125 currently. So as tattybogle suggested going to 112 would be the step down not 89. For 114 would be 4x125 + 3x100 = 800 divided by 7 = 114. Early morning braIn on my part. I'm transitioning medicines so about the same but since I have 25s I break them in half so 5 days I take 112.5 and the other 2 days 125. Waiting to test again but since always have low in range FreeT3 may need to look into adding given my brain fog! Best wishes.

tattybogle profile image
tattybogle

personally i'd only lower T4 by a tad .. eg . if currently on 125mcg then preferably try 112.5mcg , (or 100mcg if 112.5mcg is too tricky to achieve with 100mcg tablets)..... i wouldn't go lower than that at the moment if you feel basically 'better; that you did before .

slight feelings of overmedication, and high T4 level may still settle down a bit anyway (even if you didn't change anything) if it's only 8 weeks since you added T3 .

So unless you feel very overmedicated i wouldn't upset the applecart too much at this point .. just make the tiniest possible tweak with levo .. and see how things go for another couple of months . that's what i'd do .

My fT4 levels often have no bearing whatsoever to how i feel. and while a very over range fT4 is not a good thing to have long term , it's also a mistake to make significant dose changes based on a one off whacky T4 level, when you are other wise feeling basically improved.

Regenallotment profile image
RegenallotmentAmbassador in reply totattybogle

thanks so much this is really helpful and sensible. One change and keep on for 6 weeks test again and see where I am 👍 (thumbs up) will do. 🌱 (seedling)

tattybogle profile image
tattybogle in reply toRegenallotment

:)

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