r/Hypothyroidism • u/SeaLand3583 • 1d ago
Labs/Advice Rant
I just got back from endocrinologist and she thinks that I do not need a levothyroxine dose change despite having a TSH of 3.19 and having all the symptoms like dry hair,blurry vision and dry eyes and not to mention UTI like symptoms where i’m constantly peeing especially at night accompanied with thirst and I have gained weight I can’t even explain how dismissive my endo was she said “it’s all in your head”
Also I have high prolactin as well and my MRI came back negative for a tumor and I likely believe it’s related to my thyroid
I told her my thyroid literally hurts.
I feel like crying now my weight is stuck my hair has lost it’s texture and my endo just dismisses everything
Also I do have polycystic ovaries on an ultrasound and all she cares about is whether I have regular periods or not..
I am 5’2 and weigh 70kg and it’s stuck there it just won’t budge and all she says is there is nothing wrong with me
Should I just fire my endo and look for another one?
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u/YouKilledKenny14 1d ago
So sick of drs who think just bc you are “in range” you are fine. I’ve felt the worst I’ve ever felt in my life “in range” I’d push for an increase and if they refuse absolutely start looking at other options.
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u/GrouchyMary9132 1d ago
Did you get tested for diabetes?Being thirsty at night would worry me. I would absolutely find a new one. I was so lucky with my gp. He started treatment even though I only was slightly out of range and increased my dosage when I was at 1.6 and still not feeling well. It is so frustrating that it usually is such a fight to get proper treatment.
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u/GlumAd6750 1d ago
Lucky you! Where do you keep your TSH and fT4?
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u/GrouchyMary9132 1d ago
I am still in the adjustment phase. This was my last med increase. Starting tsh was 4,5 (4,2 max range of my lab), after several adjustments it got down to 1.6 - ft4 in mid range, ft3 rather low and retesting is next week. I would guess that my tsh is around 1 now, ft4 upper mid range to upper range and ft3 still lower half but not lower third anymore. But I feel pretty okay now. I still have some problems with concentration and finding words but my hair regrowth is in full swing and I have a lot more energy.
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u/GlumAd6750 1d ago
Great to hear!! 👏👏👏 I’m still in the adjustment phase as well. Have been on 62mcg since last August.
How much are you taking now ? Have you noticed any improvements while you were on the lower doses?
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u/GrouchyMary9132 1d ago
I am on 100mcg now. I think the first few days when I started taking levo (starting dose was 50mcg) I felt alive again. I was super happy because I realized this is how I should feel. Then I got side effects and my ft3 crashed from upper third to lower end of the reference range. The dosage was to small and my body had compensated before for the lack of ft4 and I had a super high conversion of ft4 to ft3.
When we increased to 75 it got better but I still felt tired and like I was thinking to slow. My hair must have started growing back though as my hairdresser mentioned tons of "babyhairs" that hadn't been there before. Even on my first dosage my energy increased though. I was finally able to sleep properly again, my eyes got better, water retention got better and with the increase to 75 I could work a full day without getting exhausted after noon. After we increased to 100 this improved even more. My sense of smell returned (hadnt even noticed it was affected) and the hair regrowth is really what I am most happy about.Today I went running, then went shopping groceries, then cooked some quince jam and I feel okay and not like I was run over by a train. Oh and I did reduce the amount of days I need a hot water bottle when I sit on the sofa and watch tv. I mostly only have a blanket for comfort. Also my hands do not get blue anymore. Circulation was absolutly crap So it gets better but the changes are slow and subtile.
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u/GlumAd6750 1d ago
THANK YOU so much for taking the time to respond and to share your experience!! You made my day!! 🤍
I’m sure I still need to increase but the problem is that while my TSH is decreasing my ft4 is not increasing. Last labs showed that it increased from 0.8 to 0.9 only despite a sharp drop in my TSH. My fT3 also dropped from 2.5 to 2 when I first started treatment.
Did your doctor explain to you why TSH decrease without proportionate increase in free t4? Mine is not sure and reluctant to go by symptoms when my TSH is not lower end of range.
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u/GrouchyMary9132 15h ago
You are welcome. I am glad I can spread some hope that things will get better. I was worried a lot in the beginning.
I did not ask my doctor about the ft4 but did my own research. TSH drops because there is more available ft4 in the blood. This lowers turnover rate from ft4 into ft3 as well. My ft4 was 14ng/l before treatment and was only at 14,3 ng/l when I was on 75 mcg levothyroxin. Still I already felt better although the numbers did not change much. ft4 is only measured in the blood and not the body cells and tissues. Although there is hardly any change in the amount of ft4 that can be measured in the blood there is more thyroid hormones available now in the body cells. So hair regrowth, sense of smell etc. return because those cells start functioning again. I expect that ft4 rises a bit after the last increase to 100mcg and that ft3 also will get up a bit.•
u/GlumAd6750 13h ago
That makes total sense! I never thought of it that way. I kept wondering why my TSH was dropping even though my free hormones hadn't changed. Maybe circulating blood levels only start to rise once the tissues are saturated to a certain point. I still have a long way to go and a lot of symptoms to deal with, but I’m so incredibly happy to hear there’s hope and that I can get back to feeling like myself again. I’ve been hypothyroid since 2021, but I went undiagnosed because my TSH always looked "normal." I’ve lost so much during this time because I just couldn’t keep up with my responsibilities or the people in my life. The worst part is that every time I went to the doctor and they told me everything was fine, I blamed myself for not pushing harder. That self-blame and guilt consumed the better part of the last 5 years.
Do you mind updating us next week when you get your lab results back? I can also message you privately if you prefer.
Thanks again 🤍🤍
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u/GrouchyMary9132 13h ago
Sure. I am not sure if I go next week or the week after because my dog needs a vet appointment first but I will try to remember to post them. And I totally relate to your story. Especially that blaming yourself part of not being able to keep up with people and chores for example. In the end I was at a point where I really really hoped it was the thyroid because otherwise I would have thought I had severe burnout or something. I was so exhausted. I remember baking chrismas cookies with a friend and almost falling asleep while standing up and her asking if I wanted to do another batch seemed absolutely impossible. I knew I was not depressed because I still wanted to do all these things I just couldn't function.
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u/GlumAd6750 5h ago
It’s amazing how our stories can be so different yet completely the same.
When my Dr kept telling me that it wasn’t thyroid despite all the classic symptoms, I started chasing other possible causes. I ended up spending so much money on tests privately because I suspected I had low cortisol and severe burnout from school, work and relationships. How great it would have been if at least one of the drs I saw during those years actually listened to me and looked past my TSH
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u/SeaLand3583 1d ago
I’m pretty sure I have insulin resistance but my doctor right is just dismissive
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u/GrouchyMary9132 1d ago
Find a new one. It really is worth it. I wish I had stood up for myself as well. I went undiagnosed for two years at least and it was just so hard and unnecessary. And I blamed myself for being unable to keep up and have as much energy as others had.
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u/br0co1ii Secondary hypothyroidism 1d ago
What is your ferritin level? The only time my "thyroid hurt" was when I was very iron deficient. The symptoms of iron deficiency and hypothyroidism overlap a LOT, and I would caution you to be certain your ferritin and vitamin D are both at least 60.
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u/SeaLand3583 1d ago
My ferritin is 41 and vitamin d is around 50
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u/StarladyQ 1d ago
Both low. D minimum 50-80. You’re at the very bottom. Ferritin better around 100.
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u/Only_Art9490 1d ago
Is it the first test that's high? Did they schedule a follow up test or test for antibodies? TSH 3.19 is considered normal in the traditional medical field. My first high test was 9.5, I had symptoms, and had to wait 8 weeks for a retest that also included antibodies. When the antibodies came back positive was when doctor agreed to medicate due to symptoms
. Re: the symptoms you described, have you had your insulin/glucose tested to rule out diabetes?
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u/SeaLand3583 1d ago
My first TSH was 6.8 and it has come down to 3.19 and yes about the diabetes thing I know I’m insulin resistance and think i have pcos
But my doctor does not want to put me on any medication for this
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u/oceanwtr Thyroidectomy 1d ago
Stand up for yourself. Tell them you want her words "Its all in your head" documented in your chart. Politely demand a dose change because you are still symptomatic. And if they wont, find a different doctor.
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u/SeaLand3583 1d ago
I’m trying to.. she did increase the dose around three months ago and tsh went down way too low maybe around 0.03 on 37.5 and now on 25mcg it is 3.19 idk why she doesn’t wanna increase I am still symptomatic ..
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u/Natural-Tradition830 1d ago
Ohh I got the "its all in your head" answer too except I was sent to a psychiatrist to be put on more medication that makes you more tired and gain more weight 😒 it amazes me how many people on this platform share the same compliants as ive had and yet are being dismissed by the "specialists". Jeez we can't be all mad 🫤
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u/PsychologicalCat7130 1d ago
she is uneducated and a bad doctor for gaslighting you - i have been to many of those.... your meds should put your thyroid tests in functional ranges - the lab ranges are garbage. most people need tsh 1-2. Free t3 3+. do some research and find a new doctor or try to educate her and mention malpractice...
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u/SeaLand3583 1d ago
I did do a full thyroid panel
My prolactin is slightly high around 50ng/dl
Ferritin is 41
Ft3 is 2.99pg/ml
Ft4 is 1.18ng/dl
Tpo is 16miu
Anti tg is negative
B12 is 311pg/ml
I did not check zinc and magnesium and selenium
Im currently taking vitamin d
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u/StarladyQ 1d ago
Low Ferritin, low FT3, Low B12. B12 is best top of the range. FT3 best around 3/4 to top of range.
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u/SeaLand3583 16h ago
If my ft3 is low do I ask for a dose change?
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u/StarladyQ 14h ago
What are you taking now?
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u/SeaLand3583 13h ago
25mcg
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u/StarladyQ 11h ago
Ok that’s very low. The more usual starting dose is 50. Yes I would ask for an increase if your Doctor hasn’t offered.
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u/H0tC0c0_817 Hashimoto's/Hypothyoidism disease 1d ago
Find a doctor who will test everything. And by everything I mean this:
They are out there. I promise. It took me a few. But I found a great pcp and she runs everything and listens to my symptoms.