When I start to feel I need an increase in thyroid meds I seem to get this weird symptom; soreness underneath my tongue.
Just wondering if this has anything to do with the condition and if anyone else has experienced this? Seems to be one of those weird indicators in my body that I need an increase….
Or maybe it has nothing to do with my thyroid at all…? 🤷♀️
When on inadequate dose levothyroxine vitamin levels drop
When were B12, folate, vitamin D and ferritin levels last tested
What vitamin supplements are you taking
Sore/swollen tongue suggests low B12
How much levothyroxine are you currently taking
Vitamin B12 always at a good level. Although next test will be next month to check still at good level. I take a vitamin B complex and also have Jarrow B12 and folate which I take every other day or when I need a break before blood tests.
June 2024
Ferritin 37.10 ug/L (Range: 30 - 207)
Folate 27.5 nmol/L (Range: > 7)
Vitamin B12 - Active >150 pmol/L (Range: 37.5 - 188)
Vitamin D 64.7 nmol (Range: 50 - 250)
I am no longer on levothyroxine. As of June 2024 started on T3 only. Currently on 30mcgs.
Thyroid results end of July 2024
TSH 3.890 mIU/L (Range: 0.27 - 4.2)
T3 5.3 pmol/L (Range: 3.1 - 6.8)
T4 5.4 pmol/L (Range: 12 - 22)
X Thyroglobulin Antibodies141.00 kIU/L (Range: 0 - 115)
X Thyroid Peroxidase Antibodies >600 kIU/L (Range: 0 - 34)
Finding it difficult to get my ferritin and Vitamin D levels up even though restarted eating meat a year ago.
So high TSH on T3 strongly suggests you’re on inadequate dose
Have you tried
A) adding T4 back in
Or
B) increasing T3
30mcg is low dose if ONLY on T3
I will increase T3 definitely. Unfortunately I could not continue with T4 it made my periods unbearable even when I increased dose with private doctor. So, will stick with T3 only for now. Felt much better on it almost instantly. But obviously need to start another increase now.
Thanks SlowDragon
Heavy periods common when on too low a dose of levothyroxine
And/or when low iron/ferritin
How much levothyroxine were you taking
Did you ever try levothyroxine plus T3
It wasn’t so much the heaviness it was the excruciating pain and groin pain I got with it. Something that only started with the T4 treatment. Since stopping T4 and starting T3 the pain has gone. I was taking 2 days off work every month because of it and just couldn’t continue that way. Not to mention I just felt more and more sick with every increase.
Had to go to see a private doctor as NHS refused to increase T4. I made it to 75mcgs of T4 with private doctor. After they reviewed all my blood tests over the past year she concluded I was not a good converter of T4 to T3. So suggested I try T3 only. So, I haven’t tried adding back in T4. I aim to continue increasing T3 and hopefully get to an optimal level. I have just felt so much better on it.
Had an iron panel done in January and apparently showing no issues but ferritin still remains low. (Hoping it will have improved in next test I do). I was vegan for many years but started eating meat again not long after diagnosis in June last year.
I am also working on my gut health. I suspect due to hashimoto’s I am not absorbing nutrients very well especially iron and Vit D.
I made it to 75mcgs of T4 with private doctor. After they reviewed all my blood tests over the past year she concluded I was not a good converter of T4 to T3. So suggested I try T3 only.
75mcg is only one step up from standard starter dose of Levo
So hardly surprising you still had hypo symptoms
Vast majority of people taking T3 do so adding small doses alongside Levo
This is usually first step to slowly add T3 to levothyroxine
What were your results when on only 75mcg Levo
most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or somewhere near full replacement dose (typically 1.6mcg levothyroxine per kilo of your weight per day)
cks.nice.org.uk/topics/hypo...
bnf.nice.org.uk/drugs/levot...
Some people need a bit less than guidelines, some a bit more
TSH should be under 2 as an absolute maximum when on levothyroxine
gponline.com/endocrinology-...
Graph showing median TSH in healthy population is 1-1.5
web.archive.org/web/2004060...
Comprehensive list of references for needing LOW TSH on levothyroxine
healthunlocked.com/thyroidu....
onlinelibrary.wiley.com/doi...
If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).
Thanks SlowDragon, I am aware that most people will add T3 in. But I just wasn’t willing to put up with the horrendous periods. I have had such an improvement since stopping T4 and starting T3 only. I just feel better, although under medicated at the moment.
My results on 75mcgs T4 were:
TSH 2.670 mIU/L (Range: 0.27 - 4.2)
T3 3.9 pmol/L (Range: 3.1 - 6.8)
T4 18.2 pmol/L (Range: 12 - 22)
Free T4 (fT4) 18.2 pmol/L (12 - 22) 62.0%
Free T3 (fT3) 3.9 pmol/L (3.1 - 6.8) 21.6%
So showed inadequate dose Levo and poor conversion
We must have Optimal vitamin levels for good conversion
Were vitamin levels tested
Last vitamin levels tested were in June which are in my earlier response. So, ferritin and Vit D definitely not optimal.
Will be checking vitamin levels next month alongside thyroid levels before I have my next appointment.
Ferritin 37.10 ug/L (Range: 30 - 207)
Vitamin D 64.7 nmol (Range: 50 - 250)
yes these definitely needed improvement
Low ferritin especially frequently badly affects conversion
So aiming for ferritin minimum 70 and nearer 100 may be better
Vitamin D at least around 80-100nmol
Thanks again SlowDragon. I am desperately trying to improve them.
I’m thinking about taking an iron supplement if after the next blood test there hasn’t been any improvement. I don’t want to take an iron tablet because one of my major hypo symptoms is constipation.
Do you have any recommendations. I have tried better you iron spray but didn’t stick to it.
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
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 5-7 days before testing
Medichecks iron panel test
medichecks.com/products/iro...
Look at increasing iron rich foods in diet
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
List of iron rich foods
Links about iron and ferritin
irondisorders.org/too-littl...
davidg170.sg-host.com/wp-co...
Great in-depth article on low ferritin
oatext.com/iron-deficiency-...
drhedberg.com/ferritin-hypo...
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.
healthunlocked.com/thyroidu...
Posts discussing Three Arrows as very effective supplement
Great replies from @FallingInReverse
re ferritin and Three arrows
healthunlocked.com/thyroidu......
healthunlocked.com/thyroidu...
healthunlocked.com/thyroidu...
Great reply by @fallinginreverse
healthunlocked.com/thyroidu...
Ferrodyn supplement
healthunlocked.com/thyroidu...
Iron patches
healthunlocked.com/thyroidu...
Thyroid disease is as much about optimising vitamins as thyroid hormones
healthunlocked.com/thyroidu...
restartmed.com/hypothyroidi...
Post discussing just how long it can take to raise low ferritin
healthunlocked.com/thyroidu...
Iron and thyroid link
healthunlocked.com/thyroidu...
Posts discussing why important to do full iron panel test
healthunlocked.com/thyroidu...
Good iron but low ferritin
healthunlocked.com/thyroidu...
healthunlocked.com/thyroidu...
Chicken livers if iron is good, but ferritin low
healthunlocked.com/thyroidu...
Shellfish and Mussels are excellent source of iron
healthline.com/nutrition/he...
Iron deficiency without anaemia
healthunlocked.com/thyroidu...
Ferritin over 100 to alleviate symptoms
healthunlocked.com/thyroidu...
healthunlocked.com/thyroidu...
Great research article discussing similar…..ferritin over 100 often necessary
ncbi.nlm.nih.gov/pmc/articl...
Low Iron implicated in hypothyroidism
healthunlocked.com/thyroidu...
Really interesting talk on YouTube, link in reply by Humanbean discussing both iron deficiency and towards end how inflammation can also be an issue
healthunlocked.com/thyroidu...
Inflammation affecting ferritin
healthunlocked.com/thyroidu...
Updated reference ranges for top of ferritin range depending upon age
healthunlocked.com/thyroidu...
Thank you for your incredible patience while you have been awaiting the outcome of our ferritin reference range review. We conducted this with Inuvi lab, which has now changed the reference ranges to the following:
Females 18 ≤ age < 40. 30 to 180
Females 40 ≤ age < 50. 30 to 207
Females 50 ≤ age < 60. 30 to 264l
Females Age ≥ 60. 30 to 332
Males 18 ≤ age < 40 30 to 442
Males Age ≥ 40 30 to 518
The lower limits of 30 are by the NICE threshold of <30 for iron deficiency. Our review of Medichecks data has determined the upper limits. This retrospective study used a large dataset of blood test results from 25,425 healthy participants aged 18 to 97 over seven years. This is the most extensive study on ferritin reference ranges, and we hope to achieve journal publication so that these ranges can be applied more widely.
Thank you 😊
I have not heard sore tongue as a thyroid symptom, but it is linked to b12 deficiency.
Your B12 levels look good to me, but maybe there's a hidden deficiency? Others might be better to advise.
I wonder if having higher iron levels would improve your periods when taking Levothyroxine. Is it worth taking iron supplements for a short period to increase your iron levels and also taking vitamin D and k. I hope you feel better soon.
Thanks Milburn. Already supplement with D3&K2. Really trying with my diet to increase ferritin but if have to will look at iron supplements. Probably a better you spray or something like that. At this point I would not go back to levothyroxine. June 2023-June 2024 was horrendous while on it. T3 has made a huge improvement and I am functioning much better. Just that weird symptom with my tongue and few other symptoms returning seems to be my bodies signal that it needs an increase.
It's so tricky. My D levels are similar to yours and slowly increasing, but I've taken vitamin D for nearly 15 years. I don't tolerate vit k supplements or foods as they bring on lupus and Aps symptoms. My iron is high in the range but I think that's only as I supplemented with ferrous gluconate, which I don't like doing, for a week last year. I may have to do it again but I'm hoping I can just take a smaller amount. I hope you find a way.
It is and I could have persevered with Levothyroxine but my symptoms were so debilitating. I just couldn’t see myself after a year of struggling continuing in the same vein. Was at the end of my tether. I am lucky I was able to see a private doctor from the thyroid uk list and finally have someone who could offer me an alternative. And I feel that changing to T3 has been a game changer for me. I am still focusing on improving my ferritin and Vit D etc. It’s a long hard slog.
It Sounds like you have a lot to cope with having lupus on top of all of this. I do hope you are able to get to a good place with your health as well. Wishing you all the best.
I have been on Levo/synthroid for over 30 years and have been so sick and tired for 30 years. Have lost jobs and friends from the severe fatigue and tiredness. Back in 04 it flipped to hyper Graves’ disease. But only last a year before it flipped back to hypo. Antidepressants affected my thyroid a lot. And my vitamin D and vitamin b12 has been low for decades. I wonder if the armour would be something I should try. I’ve heard good and bad reviews
I am sorry to hear that you have been struggling for so long. Maybe trying an alternative like armour or adding in T3 might change things for the better for you. Especially if you have felt so unwell for so long.
I wasn’t willing to wait another year on Levothyroxine hoping I’d get better I’m afraid. Life is too short.
Wishing you all the best.
That sounds awful. It seems to me that the NHS expect is to accept feeling awful and loosing quality of life on Levothyroxine. The thyroid affects our mental health too so hopefully once you're on the right thyroid medication you'll feel a lot better. I recommend trying T3 combo if you haven't already and then if that doesn't work try NDT. I've started NDT in July, it's been a rough couple of months though as my thyroid symptoms got worse but I've been feeling really good the past couple of days🤞 Yesterday I didn't feel like falling asleep or collapsing all day which is a major win for me. So I'm hoping my health is finally improving.The main downside with NDT I think is the cost. I hope you find a way to get better. Best wishes
Hypo question
Hashimotos? 
Hashimotos diagnosis
HASHIMOTOS
Boiling at night then shivery- menopause or hypo symptom?
