Endotheroad with my endocrinologist

[underact15]

My endocrinologist has said that my thyroid situation is “as good as it’s going to get” and has referred me to a haematologist to investigate ongoing low ferritin and a neurologist to investigate my imbalance/walking on a boat and dazed/spaced out symptoms. She doesn’t think they’re thyroid related. I don’t know what to think anymore!

I was doing ok on levo only. Fatigue, hair thinning and eyebrow loss/no regrowth, cold, upper abdominal pain (now resolved after a couple of years - I refused PPI etc - I don’t know what it’s now better) but nothing hugely bothersome. However, things went rapidly downhill in summer 2020 (seemingly with no trigger - I’m not sure - maybe I had covid!?) and I’ve been feeling worse ever since - intolerance to exercise (have to stop because I feel so dazed/dizzy), spaced out/dazed, imbalance/walking on a boat (physical symptom of anxiety?! I’m not sure), low mood, headaches and migraines (including blue and green vision! Now resolved quite a lot after supplements - I think), strange “slow to start” but heavy periods having had zero troubles before, trouble sleeping, nausea, the list goes on!

I’m 36, have two young children (6 and 4) and have always been slim. 5’5/6” and c.50kg. Weight gain has never been an issue. Neither has constipation.

I felt horrendous (adrenaline, everything sped up!, anxiety/walking on a boat/whatever that is! Dazed/spaced out, fatigue, insomnia) on 125mcg levo so I was dropped to 100mcg 4 days and 125mcg 3 days which I’m still doing. My endocrinologist doesn’t want to increase it again because I reacted badly. She also doesn’t want to give me T3 because she thinks I’ll react in a similar way.

I sought a second opinion from another endocrinologist who, credit to him, spent 90mins really listening and asking questions, but then told me there was nothing that could be done and tweaking levo and /or adding T3 makes no difference etc etc etc - doom and gloom!!! I came off the phone feeling cross and upset.

No idea what to think but perhaps a haematologist and neurologist will shed some light….or not!

I was diagnosed in 2015 but only have results from 2017. I’ve uploaded my most recent results. I was on 100mcg levo before that with TSH 3.08, FT4 21.06 and FT3 4.4.

[underact15]

Earliest bloods

Earliest blood test results that I have

[underact15 in reply to underact15]

More bloods

Next lot of bloods - I switched from GP to endocrinologist

[fuchsia-pink]

I'd say your results were very much better on 125 mcg every day than only on 3 days - but accept you felt "wrong" on that. But I'm not sure endos understand just how sensitive we can be to very very small tweaks in medication. If it were me, I'd up the 125 days maybe to 5 days and see how that goes and then add or subtract a day if it's still not quite right ...

I was "over-medicated" (without ever testing free T3 so actually not) a few years ago on levo only and dropped from 125 x 3 days and 150 x 4 days to 125 x 5 days and 150 x 2 days with no difference to my bloods - but then found a HUGE (adverse) difference in how I felt when I dropped to 150 only on 1 day ... [after which I point-blank but very politely refused to stay on that dose, far less drop to 125 every day which is what they wanted]. The GP refused to accept I was so sensitive to such a small change - but I was. Eventually free T3 was tested, poor conversion discovered and I've been on combo and happy every since

So I'd say it's about teeny-tiny tweaks to get your dose right. "Settling" with a TSH of over 4 and free T3 so much lower than before isn't where I'd want to be x

[underact15 in reply to fuchsia-pink]

This is comforting to read, thank you. Maybe I’m one of the sensitive ones! I had hoped that tweaking my levo dose (and possibly adding in T3) would help but the second endocrinologist I spoke to said that it makes zero difference. He made me lose all hope! 😭

[underact15 in reply to underact15]

And yes, I agree, my results on 125 every day were definitely better, weren’t they! That’s why I’m beginning to wonder if there is in fact something else going on. My GP thinks it’s stress/anxiety/depression. I’m raring to go and happy with my life though! My body says no to everything though 😢

[Mostew]

Have you had full blood count ?

Vit d needs to be higher. How long have you takes supplement?

So hard to find out what’s causing what . X

[underact15 in reply to Mostew]

I’ve had a FBC, yeah. All looks ok to me but I’m no expert! GP, endo and functional doc said it was fine. I’ve been taking vitD since Dec 2020.

[SlowDragon Administrator]

Personally I think your Ft3 is far too low

Poor conversion of Ft4 to ft3 is EXTREMELY common with Hashimoto’s

[underact15 in reply to SlowDragon]

I agree, especially now that it’s only 3.5. My endocrinologist says I’ll likely react badly to it though (because I reacted badly to being slightly over FT4 with increased levo….maybe that was a coincidence and something else entirely!? Not sure) so she won’t prescribe it and has signed me off because she doesn’t think she can do anything else for me. I should say that she is pro T3 and does prescribe it, just not for me!! 😭

[SlowDragon Administrator in reply to underact15]

Will pm you

[underact15 in reply to SlowDragon]

Thank you 🤩

[SlowDragon Administrator]

neurologist to investigate my imbalance/walking on a boat and dazed/spaced out symptoms.

This is classic symptom of low B12

Possible to get low B12 symptoms when Ft3 is low

Folate not brilliant either

Are you vegetarian or vegan?

Exactly What vitamin supplements are you currently taking

[underact15 in reply to SlowDragon]

My B12 is ok though? Do you think? My homocysteine is also ok (10, range 0-15 I think).

Not vegetarian or vegan.

I take a Nutri Advanced multi essentials for women (I know, I know! I’ve been giving my functional doc a go), selenium, magnesium glycinate, probiotics (sacch b) and I’ve just finished a bottle of omega-3. I also switched from Ferrous Fumarate to Ferrochel to see if it was more gentle on my tummy (I think it might have been) and improve ferritin and iron (no change really).

[SlowDragon Administrator in reply to underact15]

Do you suffer from heavy periods?

Makes improving low iron/ferritin difficult

[underact15 in reply to SlowDragon]

I do, yes. They’ve been heavy since having our second baby in 2017 and then something bizarre happened to them last summer when they became “slow to start” as well as heavy! I had my first more normal period for a year when I was on 125mcg levo every day so maybe it’s all part of the thyroid thing 🤷🏽‍♀️

[EyeandDry in reply to underact15]

You have most likely been tested for “serum b12” ie. b12 which is free in your blood. The best test for b12 deficiency is via “active b12”, b12 which is active at cellular level. I have permanent nerve damage from long term b12 deficiency which wasn’t detected by the common serum blood test. Your symptoms sound very similar to mine. I have nutrient absorption issues- b12, iron etc. and I now have regular b12 injections which have markedly improved my neuro issues. Just a thought ? Also, my neurologist didn’t want to know about it ….

forthwithlife.co.uk/blog/wh...

ncbi.nlm.nih.gov/pmc/articl...

[underact15 in reply to EyeandDry]

That is really interesting, thank you. I had my homocysteine tested (10, range 0-15pmol/L) as well as my MMA (result pending but it was fine last time (0.09, <0.29) - so I think that’s all ok?! 🤷🏽‍♀️

[Babette]

I can only share what's helped me. Everyone's different and sometimes it's very much trial and error.

Despite TSH and FT4 looking really good, I never felt well on levothyroxine. My FT3 was still low. Adding 20 mcg lio to an existing dose of 100 mcg levo lead to being hyper and that's really not good. I stopped taking levo and for a few years was great on 20 mcg lio (it's since been increased). It might be worth taking up the endo's offer of trying liothyronine but you might need to drop your levothyroxine. Listen to your body!

I had dizziness, vomiting, etc and was referred to ENT, who said it was an "atypical migraine" even though they admitted it didn't fit with the symptoms. They wanted to prescribe a low dose of anti-psychotic drug stemetil, which I refused to take as there's a hypothyroid contraindication. B12 levels were fine. I practice Iyengar yoga and came across a sequence for vertigo. A week of going through the sequence and the dizziness I'd had for a couple of years had gone.

I've not had low ferritin but do you drink a lot of tea or other caffeine drinks? That can hinder absorption. Or had a test for celiac disease? Some medications include gluten as a filler but you need a formal diagnosis to be prescribed a gluten free version on a named patient basis.

Selenium gives me nosebleeds but works for some people. Zinc and following the blood group diet seem to help me. I'm not back to the way I used to be but definitely better than when I was told by an endo that I'd have to accept I might never feel any better. It's all trial and error and no quick fix. Good luck!

[Hidden in reply to Babette]

OP has said endo wont prescribe her T3.

[Babette in reply to Hidden]

Yes, I read that. The reason given was that she'll react in the same way as taking 125 mcg of levothyroxine. My response was that levothyroxine may need to be reduced if liothyronine is introduced.

[Hidden in reply to Babette]

Yes, but you also said It might be worth taking up the endo's offer of trying liothyronine

OP's endo has said she won't prescribe.

[Babette in reply to Hidden]

I interpreted that as the endo would have been happy to prescribe had the 125 mcg levothyroxine not been too high. As there doesn't seem to be a strikethrough, I've left my original comments and enclosed them in brackets.

I'm not engaging in any further responses.

[underact15 in reply to Babette]

Yeah my endocrinologist won’t give me T3 full stop, even if I reduce levo 😢 Agree that the overmedicated/hyper feeling is awful.

Please could you send me the yoga link for vertigo that you used?! I love yoga but struggle with standing positions and going from head down to head up positions because of the vertigo/dizziness! 😢

[Babette in reply to underact15]

I had problems walking if there were tiles or lines on the floor and collapsed a few times. The sequence that sorted me out is in the blog post: lindainpune.blogspot.com/20...

Good luck!

[underact15 in reply to Babette]

Thank you so much, worth a shot! I feel weird a lot of the time but notice it even more when I change surfaces - going from carpet to wooden flooring for example. Bizarre and unnerving feeling! Sorry you struggled with it too but so pleased you’re feeling better!

[underact15 in reply to Babette]

Oh, this is a proper yoga pro sequence, it’s another language to me 🤣🤪🤷🏽‍♀️ Do you know if there’s a video I can follow along?! 🤔

[Babette in reply to underact15]

Sorry - this was a specific sequence someone learnt from the late Geeta Iyengar. It's a very precise and anatomical style (and I've only known the poses referred to in Sanskrit) so can be hard work but definitely worth it. It stopped me going on medication! There will be sites that describe each of the pose though.

[SlowDragon Administrator]

Adding SMALL doses T3 rather than more levothyroxine can give totally different response

That’s likely next step

Plus working on improving low vitamin levels

[underact15 in reply to SlowDragon]

I’m so hopeful that it can in fact give a difference response for me. My endo said it wouldn’t though 😢

[SlowDragon Administrator in reply to underact15]

You (and endocrinologist) won’t know if you don’t try it

[underact15 in reply to SlowDragon]

I completely agree! I couldn’t convince her though. I’ll have to try another endocrinologist - when my bank account will allow 😭