feel like I’m back at square one again

[JoJoloveschocolate]

My latest bloods look great!

t4 18.4 (12–22). T3 6 (3.1-6.8) (tests done as per forum protocol)

I’m on 100mcg daily of Levo (accord brand)

And 10mcg t3 (just trying 7.5mcg am with Levo and 2.5mcg lunchtime of thybon…working up to trying 10mcg dose in the morning with Levo)

But….

Seem to be swinging between a few good days and then bad days . Last three days have been bloody awful..,had to go back to bed in the afternoons, feeling cold and exhausted. Low back pain, shoulder blade and elbow pain is back. Starting to wonder if there is actually “something else” going on. Yet 5weeks after increasing Levo to 100 I felt fantastic …pain free and walking every day for a while. Any ideas? Seeing the gp in a couple of weeks. Thanks.

[DippyDame]

Been there...you probably need more T3 and less levo.

Your body likely appreciated the increase and you felt great then it sensed it needed more and symptoms returned.

You might want to have a look at my bio

[JoJoloveschocolate in reply to DippyDame]

thank you DippyDame . Read your bio….yes…I was diagnosed with fibromyalgia and cfs and it’s those type of pains that keep going away and coming back again. When I added t3 after a few weeks I felt awful and tests showed my t4 had dropped from 19 to 15, so increased Levi to 100mcg daily from 87.5mcg daily and after a few weeks tests showed my t4 back up to around 18 and my t3 had gone from 5.5 to 6.1 just with the Levo increase of 12.mcg daily.

[SlowDragon Administrator]

What’s your most recent iron and ferritin levels

Low ferritin will cause fatigue

When did you last test vitamin D, folate and B12

Also

Worth trying dairy free diet and lactose free Levo

Vencamil seems to suit many people even if not lactose intolerant

[JoJoloveschocolate in reply to SlowDragon]

Thanks SD. About 5 months ago: B12 and folate right at top of the range. Ferritin low but gone up from 22 to around 32. Vit D around 80 … am on the cut d and k spray. The thing is… the fatigue and pain all improved massively to start with - after the Levo increase and again after I changed to thybon t3, but then returned again. I tried df diet and felt no change. I’ll ask gp about testing vits ferritin etc again

[SlowDragon Administrator in reply to JoJoloveschocolate]

Aim to maintain Ferritin at minimum of 70 and around 100 often better

Ferritin at 32 is effectively deficient

I don’t “feel “ any different on dairy free diet …..but the blood test results are better and vitamin levels remain higher and lower antibodies ……and mucin significantly reduced

[JoJoloveschocolate in reply to SlowDragon]

Thanks for the advice SD. I’ll think it over.

[SlowDragon Administrator in reply to JoJoloveschocolate]

There’s lots of great dairy free chocolate nowadays

And I just found stunning vegan Blue Cheese

[JoJoloveschocolate in reply to SlowDragon]

I’m all for the chocolate!! Not so much the blue cheese…🤢

[SlowDragon Administrator in reply to JoJoloveschocolate]

What are you taking to improve low ferritin

retest 3-4 times a year if self supplementing.

It’s possible to have low ferritin but high iron

Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test

If taking any iron supplements stop 3-5 days before testing

Medichecks iron panel test

medichecks.com/products/iro...

Are you pre or post menopause (helpful to add age on your profile)

Vegetarian or vegan?

[JoJoloveschocolate in reply to SlowDragon]

I’m not vegetarian or vegan. I’m 55 (age is already on my profile). I’m post meno (shown on blood test last year) on hrt patches. The go said to take spatone sachets which are very low dose and to eat more iron rich foods which i have been doing. I’ll ask for a re - test of iron and ferritin when I see the gp in a coupke of weeks to see how things are doing. Thanks Sd

[SlowDragon Administrator in reply to JoJoloveschocolate]

As you’re probably aware as a regular reader …..Spatone is pretty ineffectual

Many many members have great results with Three Arrows

suggest you read the many Great replies from FallingInReverse

re ferritin and Three arrows

Eg

healthunlocked.com/thyroidu......

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

[JoJoloveschocolate in reply to SlowDragon]

Thanks for the info. I’ll get the iron and ferritin test in the next couple of weeks and then fo from there. Yes - I’ve seen many good posts about Three Arrows. I probably will need something more than spatone. I’m thinking I might even need to alter my t3 a little bit too.

I can’t access the first link. Says page no longer exists…will try again…

[JoJoloveschocolate]

Thanks SlowDragon DippyDame I’ve got a plan now of what to ask gp and for getting my bloods done again.

[DippyDame in reply to JoJoloveschocolate]

Best of luck!

Please keep us posted

[JoJoloveschocolate in reply to DippyDame]

Thanks DippyDame . Will do. While I’m waiting for my appt I’m going to try once a day dosing of the t3. At the moment, I’ve changed from 5mcg t3 with levo in the am and 5mcg t3 12md tom7.5mcg t3 with levo a.m and 2.5mcg at 12md. I’ll do that for a few days then if all ok I’ll try taking the 10mcg all in one go with the levo in the morning a couple of hours before breakfast. I think you and Regenallotment suggested trying that before.

[DippyDame in reply to JoJoloveschocolate]

Yes, but just keep moving slowly to a single dose.....it takes time.

Monitor for any signs of overmedication...fast resting heart rate, hand tremors, anxiety, heat intolerance, weight loss, loose bowels etc

You may need slightly less T3 if taking a single dose rather than splitting

Going too quickly isn't helpful....being impatient, I initially did that and suffered!! We learn by our mistakes!!

I take my full T3 dose (100mcg)at bedtime with no problems.....for me, it keeps it well away from food and drink

Hope you feel very well soon

[JoJoloveschocolate in reply to DippyDame]

Thanks for the advice. I’ll move slowly.

[Zazbag]

If it helps, my last results were similar to yours and I haven't been feeling good for a while now. I don't know if it's thyroid related but I suspect so, and yesterday I decided to try increasing my T3 dose to see if it helps.

I felt great when my T3 was at the top of the range (around 6.8). Last test showed it was 5.9. Back before I added T3, on a high dose of levo my T3 managed to go up to 5.2 and I felt absolutely terrible so I suspect I need pretty high T3 to feel good. You might be the same.

I'm on 162.5 mcg levo and was on 25 mcg T3 but have increased to 37.5 mcg as of yesterday (I only have 50 mcg tablets so can only increase by increments of 12.5 mcg).

[JoJoloveschocolate in reply to Zazbag]

Thank you so much for your reply Zazbag . It really does help! It’s great to find that there are other people who need their t3 at the top of the range to feel good. I’m wondering if that’s what i need. I’m going to ask my doctor if I can try a small increase in t3 when I speak to her…maybe go up to 12.5mcg and see how I go with that.

I do feel a little bit better today and i’m wondering if it is because I’ve taken 7.5mcg t3 in the morning instead of 5mcg. I slept really well last night and seemed to recover and wake better this morning (i took my levo and t3 at 6am then went back to sleep for a couple of hours and woke feeling a bit brighter). I’ve had a shower and managed to do a bit of light housework without too much pain.

Thanks again for taking time to share your experience. I hope you feel better soon.

[Zazbag in reply to JoJoloveschocolate]

Thanks Jo, I suspect and hope you will feel much better on this higher dose!

[JoJoloveschocolate in reply to Zazbag]

Oh I do hope so. It’s exhausting all this tweaking doses…feeling better for a while…then sliding downhill again. I feel like I’m on the rollercoaster from hell! Do you think and increase of 2.5mcg of t3 might have the potential to really help?

[Zazbag in reply to JoJoloveschocolate]

I think it's always best to make small changes and see how you feel from that, but it takes patience and you have to suffer through periods of feeling unwell to get to your sweet spot. I think it could definitely help, after 6–8 weeks you should retest your levels and depending on how you feel you may want to increase further. If I had access to tablets in a lower dose I would have added a smaller amount than 12.5mcg.

[JoJoloveschocolate in reply to Zazbag]

Thank you so much! I do feel brighter today. Talking it through on here really helps. Yesterday, I was so emotional, thinking I just can’t carry on …trying to be positive, up and down and having to bounce back all the time. Then I watched the Karate Kid and had a damn good cry which also helped a bit too I think 🤣.

[Zazbag in reply to JoJoloveschocolate]

It's extremely difficult, I totally understand, but you're doing everything right. You will feel like yourself again one day and when that day comes you'll realise all of the depression and sadness and heaviness was literally just your thyroid, not you.

[JoJoloveschocolate in reply to Zazbag]

OMG…that is such an amazing thing to hear! I just had another blub! Thank you for your kindness….I really needed to hear that today and and appreciate it soooo much. I think your beautiful comment should be pinned to the top of this site! x

[Zazbag in reply to JoJoloveschocolate]

Thank you, I'm glad that resonated!

[Lottyplum]

I've read the following from a number people/websites and may give you some helpful info: A randomized placebo-controlled trial by Wepner et al. found that vitamin D supplementation could reduce pain in fibromyalgia patients with low calcifediol (a prehormone produced in the liver from vitamin D3) levels. However, the study also noted that vitamin D deficiency alone cannot fully explain the extensive symptom complex of fibromyalgia.

[JoJoloveschocolate in reply to Lottyplum]

Thank you wo much for adding that info  Lottyplum . I’ve been using the the Betteryou Vit D and K spray for several months. I think I’ll ask my doctor about checking the levels. She did say last time I had it checked that it was a little bit on the low side although not drastically so at that point. Every little bit of info and advice helps, going forward. My memory is very bad too and I don’t retain info very well so I’m always grateful for reminders to.

[Lottyplum in reply to JoJoloveschocolate]

With all our thyroid issues, we need higher doses of Vit D/K2. At my last vit D test my D3 was good but I still take 5 sprays of D3 to keep my levels up. I watch Dr Eric Berg+he has lots of useful info on supplementation to address all kinds of issues, many of which are due to or make things worse because of low vits/minerals. Trust you get all the help+support you need.

[JoJoloveschocolate in reply to Lottyplum]

Thank you. I think my last test showed vit d to be around the 80 mark. I’ll get another test done to check on it. I don’t spend much time in the sun either because it makes me feel ill.