Need advice in adjusting dose

[Rosebud1955]

I hope everyone is making progress in finding their sweet spots. I’m here again, needing help once more. I’m only able to stay healthy forever 2-3 weeks at any one time. Can’t seem to maintain good thyroid health for too long. I’m very frustrated and feel like I’m heading towards a dead end street! My Endo is a nice young man, but clueless when it comes to helping me get well. (Thyroidectomy in 2017 for cancer)

I had my 6 months review recently and was advised to lower my dose because of my suppressed tsh. I usually disagree with his request to lower dose but this time I stupidly agreed. I’m now suffering from the after effects two weeks later. I was already not feeling well with the dose I was on, and should not have lowered it. I was too weak and battered to argue my point this one time. The entire thyroid journey is taking a toll on me and I’m totally worn out.

These are my most recent results. I followed all the requirements suggested on here. I was on 90 mg Erfa + 25 mcg Synthroid, taken all at once upon waking. Tsh: 0.01 (0.32- 4.00). FT4 : 11 (9-19). Ft3: 4.5 (2.6 -5.8). Vit.D: 103.4 (75-250) Folate: 36.6 ( > 8.7 ). Ferritin: 177 ( 15-272 ). B12 was over range but supplementing with good B complex containing B 12.

so he changed me to 75 Erfa + 25 Synthroid. I was feeling uneasy with his suggestion after one week so I returned to my dose of 90Erfa +25 Synthroid. I’m now one week into all these changes and is feeling very unwell. Severe knee and hip pains, headaches, interrupted sleep and have put on 9 lbs, my diet has not changed. I’m also getting ear pain, my hair is turning grey ver suddenly.

Strange enough, my severe headache/head pressure starts after approx 8 hours., usually after my daily hour walk. Could I be using up too much T3 when I walk? I have been walking for years and never had headaches. I have lost the will to do chores around the house, no motivation, depressed, don’t even want to socialize anymore.

I’m now thinking that I need another 15 Erfa or should I add 12.5 of Synthroid since my T 4 is so low?

Sorry for the long post! Thanks for any advice!

[Clarrisa]

Hi Rosebud, I have been on Synthroid for sometime and received a email if I could offer any help. From a lab evaluation point I am of no help, but hopefully my post will catch the eye of others able to critique labs & they will weigh in. I can share some of my experience while taking Synthroid: I take things day to day now too. I do believe I developed a sensitivity at some point to gluten so do my best to avoid it. This sensitivity had greatly hindered my ability to absorb Synthroid. I also use a white 50 mcg tablet because it has less fillers in it. So I end up taking differing doses of Synthroid on a every other day basis to achieve what I need (with Endocrinologist oversight).

I was also experiencing alot of weakness this past year, but was able to get a better handle on it by taking active forms of a Basic B Complex and a enhanced absorption concentration of calcium and minerals (Oscap, by Thorne). I believe in my personal case some of my underlying weakness was/is related to osteoporosis. I have been lately devoting reading time to osteoporosis issues and I am struck by how many symptoms you share with hyperparathyroidism sufferers. You might consider posting your symptoms on a HealthUnlocked group dealing with that too, should there be one, sorry I haven't explored that yet. My parathyroid level has been off, I have learned not enough calcium intake can even mess it up (one of among several reasons).

The one thing I keep reading over and over again is how diet is so key. There just seems to be no escaping that. I was progressively gaining weight on Synthroid too, and was at a loss as to what to do stablize my weight. I turned to a half off sale on The Mayo Clinic Diet and I have the opposite problem lately, I am trying to increase my weight. Prior to making this meal change my fingernails were a complete reck, a Dermatologist called it psoriasis. They have completely cleared up now to my astonishment from consuming a more Mediterranean way of eating. I wish you good luck in your personal search for answers.

[tattybogle]

Hi Rosebud

early am test / (on 90mcg Erfa +25mcg Levo) Feeling lousy .

Tsh: 0.01 (0.32- 4.00).

FT3: 4.5 (2.6 - 5.8) 59 %

FT4: 11 (9 - 19) 20 %

Can you tell us what times you took your last dose of Erfa / Levo ?

Dose was reduce on basis of this test ..... but at first glance a reduction was not necessary , in fact an increase could have been a better idea since fT4 was pretty low, and fT3 is not particularly high .

i would say your idea's are both ok ,either increase Erfa by 15mcg , or increase levo by 12.5mcg . then give it a good 6 weeks too settle in before retesting / deciding what to do next. Personally i'd just pick whichever is the most convenient to do with the tables you have available. but i' m not the best person to advise as i don't take NDT .

i will tag SlowDragon GlowCoach or SeasideSusie to comment on the vitamin results , and offer better advice than me about Erfa/ levo dose adjustment.

Vit.D: 103.4 (75-250)

Folate: 36.6 ( > 8.7 )

Ferritin: 177 ( 15-272 ).

B12 was over range but supplementing with good B complex containing B 12.

[Rosebud1955 in reply to tattybogle]

hi Tatty: I took levo 25+90 Efra 24 hrs prior to testing & 30 Efra 12 hours prior. No food, no biotin. I’m also wondering if I should have just tested 12 hrs before taking meds since I only take 25 Levo. What’s your take on that.

Thanks

[Rosebud1955 in reply to Rosebud1955]

correction, I ment 60 Erfa+ 25 levo

[pennyannie]

Hey there again :

Do you have an inflammation marker reading there - CRP - as I asked last time and now adjusted down your vitamin and mineral supplementation.

Have you considered taking all the Efra 1+1/2 grains + the 25mcg T4 together ?

I'm truly sorry you feel so low - it's difficult - and identify well with ' not being bothered about household chores ' and feeling overwhelmed and depressed with it all.

Gentle exercise is more therapeutic than being stuck indoors alone looking at what you don't feel inclined to do - maybe cut the hour walk into a smaller walk - twice a day ?

I think you have changed doses a bit too much and need to stay put on the same dose for a couple of months, be kind to yourself and stop listening to this endo and start listening to yourself.

[Rosebud1955 in reply to pennyannie]

thank you Penny! I agree with you about changing doses too often. Whenever I start feeling unwell, I panic and try to fix things. Yes, I take the T4+ Efra all in one dose. Tried splitting but it was just too stressful and the second dose always make me feel strange. So awful for me, I get really scared when the unwell feeling creep up. I will definitely take your advice and ride out the storm even when I feel unwell. It’s very distressing when one is working with an Endo and still have tweak doses on my own. I feel so abandoned by all these doctors who couldn’t care less what their thyroid patients have to endure. I’m close to giving up, it’s mentally draining.

Thank you for taking the time to weigh in, very much appreciated!

[Beau55]

Hi Rosebud, sorry to hear you feel so unwell. Out of curiosity is there any reason you are adding Levo to the erfa at this point? The erfa is still only a small dose and would have thought it was better to get that up first before adding in more T4. With NDT it is best to dose to symptoms. The reason your progress is patchy is probably because you aren’t on enough yet to sustain your progress.

Have you had your cortisol tested? Low cortisol can make increases more difficult and prevent you getting the full effect of the medication. I found that when raising NDT with low cortisol I really struggled to sustain any improvement and at times felt totally toxic.

Some people can’t tolerate any T4 due to a number of reasons or rt3/d3 process leaving them still hypo so may end up on T3 only. However, I think at this point you are still massively undermedicated for your needs and potentially have low cortisol.