Dear wonderful knowledgeable and kind people, sorry to call on you again!
In summary - last year I was on 75mcg Levothyroxine for hashimotos. Always tired, weak, often low mood and brain fog.
Trialled an increase to 100mcg sept-Dec but felt worse and TSH almost zero (risk to heart and of osteoporosis endo said - is this true?) so agreed with endo to go back to 75mcg. Then had an energy boost in December 🤩 only to crash massively after Xmas. Struggling through the days now, brain fog, weakness, low energy & mood.
Thyroid results this week all worse which explains a lot!
ferritin however has increased slightly from 32 to 46, sorry don’t know range.
Results (now back on original dose of 75mcg)
T3 - 2.5 (range 3.1-6.8) lowest it’s been for ages!
T4 - 14 (12-22)
TSH 0.38
TPO 27.9 (<75)
Ferritin 46 (up from 32) sorry don’t know range
Vit D 131.8
Seeing doc today (endo said nothing else can do) and would love your thoughts please.
I seem very under medicated but felt initially worse on increase to 100mcg, was also accord not teva which is my usual brand.
Seem to struggle to convert T4 to T3 as T3 always bumps along as 3.something
Also ferritin still low I think? start taking iron supps maybe?
I also have SIBO and am currently on low FODMAP, gluten, grain, dairy free (been gluten free for nearly two years now) eating plenty of meat, fish, eggs, fruit and veg.
And taking antimicrobials berberine and oregano plus NAC to kill off SIBO so wonder if affecting thyroid levels in some way? All so complicated!! 🤯
Thanks so much wonderful friends 🤗
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Hopetoheal22
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Hopetoheal22, your T3 is too low and you are a poor converter of T4 to T3. I would suggest you need some T3, liothyronine on top of your T4, levothyroxine. Also suggest ablood tests for Vit D, B12, Ferritin and Folate. Pretty useless endo you have seen, no doubt a Diabetes specialist. Ask for the TUK list of approved Endos. Your GP cannot trial you on T3 it has to be an Endo.
Hi Crimple, thanks so much for your helpful reply, you’re right on all fronts! 😄
They tested vit B and D and Ferritin and said all ‘normal’ although my ferritin is always around 30-40 (sorry don’t know range.) doc wasn’t worried about it
So Doc has asked endo if I can try T3 so have to wait for their reply. Makes sense when T3 so low and I clearly don’t convert well as you said.
I’ve also just been prescribed oestrogen and progesterone HRT as have perimenopausal symptoms, but am unsure about taking it now as feel I should deal with SIBO and T3 first, unless a boost of these hormones might help? All so confusing.
Thank you so much for your wise and supportive words, much appreciated 🙏
bit too late for the doc's appointment hopetoheal22 , but will stick it here anyway .
Just had a look back through your previous posts ~What about trying a dose of levo in between 75mcg and 100mcg (87.5mcg) while waiting for anything to happen about trying some added T3, (which would obviously be a good idea since its always been at the low end and is now below range) .
,, it is common practice for GP's to prescribe 'alternate daily dosing' to fine tune patients doses of levo . eg to get 87.5 they prescribe 100mcg one day and 75mcg the next and so on .. and for those of us who find we notice the different dose on different days and find it unsettling , we can just cut the 25's in half in order to take the same dose every day .
My prescription for 112.5mcg reads "100mcg once a day . and half a 25mcg once a day "
if you think you feel better on Teva then make sure the tablets prescribed are Teva (who do make 100's/ 50's/ and 25's/ as well as 75's) That will rule out having a different brand as the cause of any problems if you feel less well like you did last time you tried 100mcg.
This list of recommendations advises GP's to keep TSH below about 2/ 2,5 when treating with Levo (some were written specifically for GP's 'update' sources by NHS endo & cardiologist) so you can use these as basis to ask for increase since your TSH is 2.5 healthunlocked.com/thyroidu.... my-list-of-references-recommending-gps-keep-tsh-lower-
The "Low TSH ~ risk to heart and bones" question :
please see my reply to this post (3rd reply down ) healthunlocked.com/thyroidu... (contains links to a list of posts with useful discussions / evidence on the subject of low TSH / Risk vs Quality of Life)
Long term study of patients on Levo ( this study is the basis of the NHS/NICE evidence that low TSH is risky) academic.oup.com/jcem/artic...Serum Thyroid-Stimulating Hormone Concentration and Morbidity from Cardiovascular Disease and Fractures in Patients on Long-Term Thyroxine Therapy
Shows 'low' TSH did increase risks BUT , it also showed that 'low but not supressed' TSH (0.04 -0.4) did NOT increase risks , they are no greater than risks for TSH 'in range' (0.4-4)
TSH below 0.04 increased risks quite sharply . But bear in mind they did not have any data for fT4 levels or fT3 levels ,,so it is probably that these people with increased risk actually had relatively high T4 / T3 levels... yours are not high , in fact your fT3 is now below range . Also even though the risks did increase for TSH below 0.04 , most of those risk were still LESS than the risks for TSH over range .. especially once it get's over 8/9/10 ish ... and i bet you didn't get an NHS GP panicking about your heart and bone ' risks' when your TSH was 14 did you .....
if 100mcg reduced your TSH to 0.02 .. then it is reasonable to assume 87.5mcg would not reduce it quite that far .... and if you stick to Teva , an increase in dose may help you feel better while you are waiting for 'what next with the hunt for somebody to agree to add some T3' .
I find 12.5mg increases/ decreases are enough to have quite a big impact on how i feel.
Re. risk to 'bones' see this post (the actual risk is extremely small , more or less insignificant... study of bone loss in patients with long term supressed TSH on levo~ deliberately kept supressed following thyroid cancer to prevent regrowth) healthunlocked.com/thyroidu... longterm-subclinical-hyperthyroidism-does-not-affect-bone-density-in-patients-having-had-thyroid-ablation-for-cancer
Hi Tattybogle, thanks so much for your very helpful and sensible reply. A slight increase from 75 while sticking with Teva sounds like a great idea.
Doc has asked endo if I can try T3 so have to wait for that.
I’ve also been prescribed oestrogen and progesterone HRT as have perimenopausal symptoms, but am unsure about taking it now as feel I should deal with SIBO and T3 first, unless a boost of these hormones might help? All so confusing!
I’ll read those links you sent, thank you so much for your help 🙏
HRTwise personally I’d wait but others would disagree. It does affect your absorption of Levo so many need a Levo dose increase once you start it.
Depending on what you’ve been prescribed you might want to check the ingredients.
I hadn’t realised the Femoston they put me on years ago (wrongly diagnosed, I was hypo not peri menopausal) contained lactose. I just thought I’d become a burpy refluxy menopausal woman, depression and anxiety followed soon after along with chronic injuries from running (which I’d done all my teen and adult life). These are now resolving now my Levo dose is close to optimal.
I take Teva Levo too, one pharmacy dispensed Accord a few months back and with 15 minutes I was gurgling, burping, itchy mouth, tingly tongue. Accord contains lactose too. I returned it, the pharmacist released the prescription back to the GP, had to change nominated pharmacy (as this one had no control over supply) new pharmacy have been super helpful and I’m trying an alternative lactose free brand Aristo next.
thanks so much Regenallotment, so sorry you had such unpleasant experiences with the lactose containing meds. I’m mostly dairy free because it makes me snotty, don’t think I’m too sensitive to it. But just shows how seemingly small things make a big difference.
Think I will hold off on HRT until SIBO is sorted (if that ever happens!) as don’t want to do anything else to impact thyroid at the moment. Part of me wonders if it would help as a lot of my symptoms got worse when I stopped breastfeeding, suggesting they’re hormone related. Argh so complex!!
tricky isn’t it, after my first pregnancy 21 years ago, I now know I was hypo, after the second hyper (told post partum thyroiditis it’ll pass) the pill made me monstrous, delusional, had 12 weeks CBT after the HRT debacle. Levo has been the answer for me. Was offered a mirena coil recently…. I don’t think so 😬 good luck with the SIBO stuff. Some good threads here if you do a search loads of ideas from people. 🌱🦋
thank you so much Regenallotment, without your help and that of the others here I would be in complete despair, means so much thank you 🙏❤️ I’m so sorry you had such a tough time after your pregnancies (as if it’s not hard enough with babies and young children!!)
Yes I took the pill for six months in my 20s and it made me feel a bit crazy and cross, so I stopped. My doc is super keen on HRT and thinks it’ll help - maybe it will, but I’d rather try T3 first as I have a known deficiency there, and my cycle has finally settled down into something very manageable after a rollercoaster hormone ride when I stopped breastfeeding. Reluctant to mess with it with HRT! Sounds like you feel similarly in declining the Mirena, so you didn’t return to HRT after stopping?
Thank you re SIBO, I’ll have a good look on here. Hope my current restrictive diet and supps help, just want to eat more normally again - gluten dairy sugar free will feel so liberating!!
Have a lovely weekend and hope you’re doing well, get some rest when you can 🤗
nope haven’t returned to HRT and since 125mcg period is slightly lighter (still taking transexamic acid) and 28-31 day cycle which is more like it was in my 20s. I’ll consider again if I get peri menopausal symptoms but I’m 100% satisfied it was all hypo symptoms. Good for you, sounds like you are on the right track 💪🌱🦋🌱
Estrogen good for your gut, progesterone good for T4 conversion... it is all a game of balance, with HRT likely you'll need a little more T4... equally T3 needed for good gut health... Soz not much help, but ideally a good balance of all hormones is key, trickier when peri as still fluctuating and can drop off pretty sharply but start with a low dose and you'll get a feel for it 🤗 seems obvious but the more active you are the more you might need
hi Eeyore, thank you so much for your help, I’m so grateful to you and the other forum members , you stop me feeling mad and alone! 😄
That’s helpful info re oestrogen helping gut and progesterone helping conversion thank you, I need help with both, just worried about tinkering my sex hormones as I’m in an ok place with my cycle, and sleep and PMT are much improved 🤞 cycle length quite consistent too and it’s heavy but not troublesome. The Pill made me feel crazy two decades ago so it worries me to take anything. Everyone has a different experience with it so hard to know without taking it, but I’m very wary.
Doc has given me 50 strength oestrogen patches with progesterone added in in last two weeks of the month, should I start on a lower dose if I do take it?
Going to finish my SIBO killing regime before I try it… if I do… !
thanks again, I’m so grateful, hope you’re well and have a wonderful weekend x
It is really tricky when you are at the proverbial fiddlers elbow stage 😬
I would suggest if you want to give the patch a trial you could cut it in half and see how it goes... it might be enough to feel the difference so you know if it's for you, it'll help with the heavy bleeding hideous phase 🤗 which also impacts your iron levels 🙄
I'd also suggest using the progesterone vaginally on alternate nights and see how that goes to start with... putting it where it is needed rather than through gut and liver etc 🤗
Being a bit mad together is so much more fun 😜
I understand your anxiety but remember you are only looking to stabilize your dropping hormones rather than increase them to unnatural levels
thank you Eeyore, you’re very wise. Yes that’s what my doc said about bringing levels up, do the patches still stick well if you cut them in half?
Yes very true if it could lessen the bleeding, would surely help with the iron. Worried it might go the other way!! I worry about experimenting as I’m in a place where I can just about cope with life and it’s enjoyable, but any steps back would be tough 😬
good point re progesterone too, would it tax my gut and liver?
I had the Evorel and they are incredibly sticky all over so no issues there.... I ended up sticking 2-3 on before swapping to Lenzetto
When I first started on progesterone it made me feel punch drunk, if I needed a wee in the night quite amusing but not ideal! Switched to vaginal and after a few weeks back to oral as other way is a bit oily so pant liners advisable or old knickers 😉
I'm on every night now so only one capsule and a great nights sleep... I'm like you would rather take the minimum necessary of every supplement and try to avoid going via the gut to lessen any possible upset there as I've a delicate tum.
With your sex hormones you are on the natural decline so are likely to benefit from a top up at some stage, I would recommend to everyone start early rather than waiting to fall of a cliff before adding... just take it at your own pace but you are unlikely to overdo it as these are low doses 🤗
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
Thyroid disease is as much about optimising vitamins as thyroid hormones
Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing. It’s possible to have low ferritin but high iron
We have received further information the lab about ferritin reference ranges. They confirm that they are sex dependent up to the age of 60, then beyond the age of 60 the reference range is the same for both sexes:
Males 16-60: 30-400 ug/L
Female's: 16-60: 30-150
Both >60: 30-650
The lower limit of 30 ug/L is in accordance with the updated NICE guidance and the upper limits are in accordance with guidance from the Association of Clinical Biochemists. ‘
Thank you so much SlowDragon. I asked my doc today if I was anaemic and they said no….
I’ll continue with red meat, liver, eggs, green leafy veg and vitamin c etc. I’ll post my bloods here, would love to know what you think. I’ll read the links you sent too. Thanks again 🙏
Thank you so much SlowDragon as always, I’m so grateful for your wisdom and support, would be feeling so alone and lost without it! 🙏
I take Teva 75. Tried 100 accord but didn’t feel good on it. Back on Teva 75. And the results above.
That’s a good idea to up the dose slightly thank you, do I have to check with my doc? She’s asking the endo to prescribe me T3, but endo seemed reluctant… I don’t understand why they’re happy to give T4 for a T4 deficiency but not T3 for a T3 deficiency, especially when I’m clearly a poor converter?!
Doc also said I’m not anaemic (as within range!) and not to take iron supps. I eat read meat twice a week and liver once a week generally, eggs, vit C etc, but ferritin always been 30- 50 in last few years to my knowledge. Not sure what else to do to bump it up?
Thanks again SlowDragon , hope you’re feeling well and have a good weekend 🤗
thank you so much as always SlowDragon, I’m 58kgs so should need about 90mcg. I’m trying to put weight on as I’m underweight for my height but I think the SIBO stops me absorbing my food properly.
Feeling absolutely wiped out so going to get some iron spray (might absorb in mouth better than gut 🤞) and still eating plenty of meat and liver and vit c. I’m mostly dairy free (mainly because it makes me snotty and sore throat) and ok with butter and some hard cheese
Interesting about needing TG checked too. I’ll get one of those private tests done thank you. Thyroid issues are expensive!! 😬
I feel like having more thyroid meds will make the most difference, at the moment I feel how I did when my thyroid levels first crashed, so physically weak and unable to think. Low mood and muscle aches, ill and little immunity.
I’m pushing to get T3 as i don’t seem to convert well to T4. If there’s anyone you can recommend in south England to see privately I’d be most grateful thank you. I’m continually told I’m ‘in range’ and now my T3 has dropped below range I’m still having to push to get meds. Endo worried about suppressed TSH. It feels impossible some days, I just want to feel well and energetic again.
I hope you’re doing well, signs of spring will give us a lift hopefully 🌷 ☀️ Best wishes and thanks again SlowDragon 🙏
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
Thyroid disease is as much about optimising vitamins as thyroid hormones
Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing. It’s possible to have low ferritin but high iron
We have received further information the lab about ferritin reference ranges. They confirm that they are sex dependent up to the age of 60, then beyond the age of 60 the reference range is the same for both sexes:
Males 16-60: 30-400 ug/L
Female's: 16-60: 30-150
Both >60: 30-650
The lower limit of 30 ug/L is in accordance with the updated NICE guidance and the upper limits are in accordance with guidance from the Association of Clinical Biochemists. ‘
Nobody else has mentioned it but be aware of your green veg and other foods known as active goitrogens. These can compromise your uptake and conversion ability for thyroid.
E.g.raw cruciferous veg like cabbage, broccoli, Brussels sprouts, cauliflower, mustard greens, kale and turnip.
Fat intake can also cause issues( for me- Biliary malabsorption has knock on affect of absorption ability).
Soya had a huge impact on my levothyroxine uptake...as in soya in any form cancelled absorption altogether.
Green tea can also decrease serum t3 t4 and increase tsh. Certainly at least avoid stacking, taking these foods too often.
I have only recently began Lowfodmap diet under guidance of dietitian. Might it be worthwhile to try restrictions and introduction as you would have early on? Food sensitivity. I know that Menopause has come with unstable levels TSH levels for me....could of course just be coincidence. Or pharmacy that keeps changing thyroxine manufacturer?!...
I hope that healing is positive and any issues easily resolved for you as quickly as possible. Hope this helps a little. I never knew about any dietary complications for many years.
hello Muir, thank you so Koch for your very helpful reply, so grateful 🙏
I do eat most those veggies but always cooked so guess that’s ok?
I have one cup of green tea with breakfast, normally an hour or more after I take my levo, guess that’s ok too? My only slight caffeine hit of the day!
Pretty sure I don’t cope with fat well either (or alcohol) I feel like my liver or gallbladder are off but scan and bloods look ok apparently…
Yes perimenopause / menopause throws everything off doesn’t it, doc has prescribed me HRT but I’m reluctant to take until I try T3 to bring my T3 up first. The pill didn’t agree with me and my cycle is ok and peri symptoms have settled so don’t want to rock my (already unstable) boat!
I’m also on low fodmap and no grains, gluten, legumes, dairy, sugar, alcohol - gut feeling a bit better and less bloated & hungover, also taking antimicrobials to kill the SIBO which is a real problem for me. Not sure how reintroduction will go as I seem to react so easily to things that I used to be fine with! Will prob stay off gluten and dairy. How I miss my happy uncomplicated relationship with food!!
Wishing you a very positive healing journey too and hope you’re doing well and have a lovely weekend 🤗 thanks again much appreciated 🙏
Ps...Low dose eostrogen hrt will provide some protection for bones from osteoporosis and other menopausal symptoms. However, all medical advice, family history etc should be considered when making a decision answering if HRT, and which type, is for you.
Total hysterectomy 2005, surgical menopause, eostrogen only hrt 10mg daily for 11 yrs, no seeming after effects. No impact on thyroid during that time. I do have osteoarthritis quite badly but density and mammograms all looking good. Hope that provides you with useful info one way or tother.
thank you again Muir, don’t recall being asked any questions about my family history when given HRT, maybe in the past, brain fog! That’s interesting about being on 10mg after surgical menopause, doc wants to start me on 50! Feels a high starting dose, especially when not sure if I am perimenipausal… I am 44, cycle regular and manageable after a rocky time when I stopped breastfeeding.
Sorry about the osteoarthritis but great that bone density and mammogram looking good 👍
Hope you’re keeping well and thanks again for your help 🙏
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