Still feeling lost

[Sporty-mi]

Hello all you lovely people I wonder if someone can give me any advice.

I've been under active hashimotos for 20+years and meds kept increasing until last November I was extremely ill and very undermedicated. I was tearing my hair out for help.

I live alone and have elderly parents. I am 53 myself. I've always been very active running cycling etc. Until last November. I paid to go private to see an endocrinologist.

To cut a long story short abd after s big fight levothyroxine just wasn't helping he gave me some T3 and when I started this in January with my T4 I had about 2 weeks of feeling better. Then went downhill again.

He has now put me on 100mg of levo and 2 x 20mg of T3 .. and told me to grsdually increase to the full 40mg dose (no more ) I've been on this full dose now for 2 months and feel no better. I'm due to go back in august . But feel I can't wait. So I am now on the cancellation appointment list to see him sooner.

I'm worried because he says he will not give me more if this doesn't work. I have no idea where to go from here.

I've had trouble in work as I've been signed off on reduced hours since last December and work are now being funny. I've seen the occupational health at work and she was brilliant. I've handed them a further sick note. I am currently full time but managing only 6 hours a day. And feel unable to do anymore. I've been to an appeal with the union Rep at work and lost my case.

HR say I've got to go part time or partial retirement .. and I've got to make the decision by the end of June.

Dispite my gp saying I'm not fit for full time work.

I don't know what else I can try.

I'm on all the vitamins that are recommended on here. I take meds properly well away from food or other vits. And I've been gluten free for over 6 months

I'm wondering if anyone else has experienced the same problem with T4/T3 ?

I'm wondering if there is anything else I can try. As I feel awful. Brain fog is the worst .. fatigue and I'm fed up of the daily fight 😢

[Marz]

Sorry you are struggling - but without any results it is difficult to comment. What supplements are you taking ? - how long and how much ?

Brain fog suggests low B12 and low T3.

Are you taking any other medication ? - Gut issues ?

Apologies for all the questions .... 😊

[Sporty-mi in reply to Marz]

Thank you .. yes I'm due my B12 injection .. imdue more blood tests in a couple of weeks

my last bloods when I was on 100mg levo and 20 mg of T3 in march were :-

TSH <0.10

T3. 4.9

T4 12.5

B12 1595

All my other results were ok .. I was taking too much vit D but reduced that now.

I know my endo won't increase my T3 as he told me that last time Do you think I should mention NDT ? I don't know what else is available

[SeasideSusie Remembering in reply to Sporty-mi]

Sporty-mi What are the ranges? It's possible that FT3 is fairly low in range. We really need to see the new test results now you're taking 40mcg Levo.

"All my other results were ok .."

What are they? OK doesn't mean anything, let's see if they are optimal - Vit D, folate, ferritin?

[Marz in reply to Sporty-mi]

Do you have the ranges for thyroid results ? B12 always over range when injecting. How often do you have them ? Are you taking a BComplex with Folate/Folic Acid - as Folate works with B12 in the body

How much VitD were you taking and what was your result ?

[Saggyuk]

Just in case you were unaware, you shouldn't leave the T3 dose 24 hours like the T4. I'm on T3 only and my levels drop pretty fast so only leave it about 7 or 8 and I think the advise on here is to leave no more than 12 hours or will skew the result.

I'm only mentioning this as you said you improved at first and then felt worse. I have no thyroid function and 40mcg T3 is my full dose for me so yours with the T4 would be quite a high dose altogether. When I'm slightly overmedicated, I actually feel worse than when hypo and get even more tired rather than typical hyper symptoms so might be worth bearing in mind on the off chance

[UrsaP]

I read somewhere on a thyroid FB page that Hypothyroidism is considered a disability in the workplace. I cannot guarantee this to be true but might be worth you looking into it. I had to give up my job a few years ago.

I spent 20+ yrs on T4 and never felt any better. (Had gone 10 years without a diagnosis despite seeing a specialist who said there was and there wasn't something over a two year period (the nature of Hashimoto's!!!) Had to fight for Endo appointment and T3. Had same problem, initial T3/4 mix helped for a while but then went downhill fast. Before I saw Endo, GP did cortisol test and said it was 'normal'. Endo said it was borderline. Rechecked it and said it was ok then issued small amount of T3. Endo wouldn't increase meds as reading blood result.

I went to see Dr P in the end. He said Low adrenal function, slowing metabolism down further impacts on uptake of medication. Basically I was T4 toxic... caused CFS, Fibromyalgia, Migraine to mention just a few.

Adrenal and thyroid disfunction go hand in hand. Maybe something to discuss with your Endo - and/or the possibility that you are not converting?

I stopped T4 and started on adrenals supplements, kept on low dose of t3. Built adrenals back up slowly increasing thyroid meds. Tried several times to go back on T4 but each time I stopped the 'symptoms' disappeared within days, as soon as I went back on it symptoms returned.

I was getting prescription from GP at this point. I had spoke to him to tell him I was seeing Dr P as all else had failed. And I asked him to support me. He said he would. He did. And working with Dr P I gradually increased my T3 to 60mcg pd. What a difference! Once the balance was reached and settled I got my life back! Never felt better. I have been on T3 only for over 7 years now - no adverse affects - unlike when on T4! I do still take adrenal supplements. And if I have big stress - family usually the cause...I do struggle and it does take me a long time to get the balance again. But I know I can and do. I lost 4st in 11 months about 3 years ago - my levels were settled, doing fine on T3. I did not lose weight by taking T3 alone. But joined SW and I honestly believe that it was the meds being balanced that made it 'easy' for me to lose the weight. Was so easy. But stress over the last 18 months or so was awful and I have put some weight back on. Once meds back on track I'm sure I can lose it again.

But it was always the fatigue and the fibromyalgia that were the worst to deal with. TG they are not part of my life anymore.

All the best.