Do others have a day like this?

[Mlinde]

I wake up, sometimes much too early but feeling kindof okay but once I get up, it's downhill for most of the day. Anxieties brought on by my feeling unwell, just not feeling right; aches and pains, difficulty focusing. Initially, I put this all down to my general state of anxiety, not just about my health but the whole nine yards.

But as the day progresses, I get steadily better, until by late afternoon, I'm feeling almost normal, I can write this for example. In any case, it recently occurred to me, because of its tedious repetition, every day, that it could be my hypothyroidism? I'm a bad converter of T4.

And please don't ask me for my latest bloods, as my 'latest' was last year some time and I've given up getting tested, what's the point, I can't get T3 and as long as T4 kindof works, there doesn't seem any point in getting tested. The last time I increased my dose from 100mcg to 125mcg, it was my doing tho my doc agreed with me. T4 moderates the symptoms but doesn't get rid of them.

[Buddy195 Administrator]

Hi Mlinde, anxiety has been the worst thyroid symptom for me and is only under control when both key vitamins (ferritin, folate, B12 and Vit D) and thyroid medication are optimal. For me, regular testing is key as my thyroid and vitamin levels do fluctuate and I need to ‘tweak’ medication & supplements on an ongoing basis to keep my anxiety levels manageable. Taking magnesium supplements early evening helps me relax, as does mindfulness & guided meditation. I had several months of CBT with a psychotherapist after my GP diagnosed ‘health anxiety’…joining this forum helped me realise that my increased anxiety was 100% related to being under medicated.

Although I understand your reluctance, I would encourage you to test privately (if you are able) for FT3/ FT4 and key vitamins and post results on the forum. For me, taking a good B Complex improved my B12 and folate and this has helped reduce my anxiety levels. I also found that combination therapy improved my symptoms.

[Mlinde in reply to Buddy195]

I have tested my vits etc and they're all fine. As I said, I know I don't convert T4 very well. And I've tried CBT, twice, it's fake medicine, designed to emulate real treatment, which is expensive of course.

[Buddy195 Administrator in reply to Mlinde]

We are all different Mlinde and (for me) the mindfulness, journaling & meditation I learnt from taking part in CBT sessions helped and I continue to use this several years later. Many people have improved their mental health through CBT, although I fully understand it is not for everyone.

Although you state your vitamins are ‘fine’, I’d encourage you to share them with forum members as they may not be ‘optimal’

[jade_s in reply to Mlinde]

I used to have this and like Buddy195 had vitamin/mineral deficiencies plus adrenal insufficiency. But what really fixed it was starting b12 injections. My serum levels were always fine, and went up on tablets, but I was still functionally deficient. After starting injections, I was also able to tolerate thyroid meds again.

Early symptoms I had included tingling, bugs crawling sensations, bumping into thing, dropping stuff, swaying on stairs, spots and holes in vision, fibromyalgia pains everywhere, anxiety and depression, paranoia, anger and intolerance, memory issues and lots of other vague symptoms. I also need high doses of folic acid despite sufficient blood levels. I went along like this for years until one day I had total numbness in my arms, then I finally made the connection. I couldn't tell you exactly why I felt better at night and worse in the morning, but every single day was exactly like that.

In case any of this sounds familiar, you might want to investigate "functional b12 deficiency"

[Mlinde in reply to jade_s]

Jade, I don't have B12 deficiency.

[Hedgeree in reply to Mlinde]

Hi Mlinde,

Apologies for going off topic slightly.

From my own experience you can get great and not so good and terrible CBT therapists. It's a case of finding the right person to work with. Similar to any other therapy. Difficult if you're on an NHS waiting list for two years you feel you have no choice then when your appointment actually comes around.

Without going into detail I know that when you find the right therapist the results can be fantastic and life changing but it is hard work.

I've also had to make a complaint about another therapist who I felt was quite inappropriate and could possible cause more problems for their clients.

Regardless it certainly is not 'fake medicine' as you said in a previous reply. As Buddy195 says it's not for everyone though.

Best wishes.

[Mlinde in reply to Hedgeree]

Dear Hedgeree, Unfortunately, I don't have any choice over who I see.

[Hedgeree in reply to Mlinde]

Hi Mlinde,

I didn't either but was very fortunate in one of the therapist's that I saw as she was brilliant.

Also it was before the NHS restricted the number of sessions to 12 so I saw her for an extended period of time.

Also as previously mentioned it doesn't work for everyone and it isn't an easy process.

This forum is fantastic and has lots of collective knowledge from members' experiences. It has helped me enormously. You will get good advice from the members here.

Best regards.

[Lilac200 in reply to Buddy195]

Hi Buddy195. It helped me to read your reply. I know my thyroid meds aren't helping

me like they should, as I'm a long-time patient. Regardless of what the levels

may say, this combo of meds isn't helping me right. The anxiety is getting worse

on me the longer I stay on my current meds (been a few months). Many symptoms

of low thyroid, but taking some of the thyroid meds can make the anxiety worse

sometimes, plus some other symptoms, too. I go into the thyroid doctor on

Monday....once again, I get to tell him I'm getting a mixed bag of hypo and

hyperthyroid-type symptoms. Ugh!

This endocrinologist actually does test me for some vitamins & ferritin. I'm in

the US, but I was wondering if you could tell me the brands of the B-vitamins

and D-3 supplements that you take? The magnesium, too....plus, what type

of magnesium. Not sure if what you have in UK is available here, but I've been

having trouble finding supplements that don't give me extra side-effects.

Thanks for any response you might have.

[Buddy195 Administrator in reply to Lilac200]

I would start a new post Lilac 200 & give your current thyroid & vitamin levels, then members can better advise. Also, do write a little bit about your thyroid journey on your profile, so we have an understanding of your symptoms/ medication etc 🦋

[Lilac200 in reply to Buddy195]

Hi, Buddy. I will come back and write about my thyroid journey when I feel a little better, and I'll start a new post with my levels, too. I'm doing so poorly right now that I have to save a lot of energy for my thyroid appointment on Monday....my labs are probably in so I can look at them, as I just got them done on Tuesday--but I can't quite force myself to look at them, yet. By Sunday morning, I'll have to, so I can ask him better questions. It's been a long & rough thyroid journey for me, since the manufacturer changed the one thyroid drug that really used to help me, long ago. Nothing else has helped well, since. Thank you for the good suggestions. I'll definitely follow-up on them.

😀

[Jazzw]

Whoa Mlinde—just seen your year-old results on your bio. Were these from before you raised your dose?

TSH:21.30 mIU/L (Range: 0.27 - 4.2)

Free T3: 2.6 pmol/L (Range: 3.1 - 6.8)

Free Thyroxine: 15.2 pmol/L (Range: 12-22)

Thyroglobulin Antibodoes: >4000.0IU/mL (Range; 0 - 115)

Thyroid Peroxidase Antibodies: 200.0 IU/mL

Because even if they were, you poor thing—it looks like you’d still be woefully undermedicated.

By the way, your B12 was more than ok back then—it was an active B12 result so actually quite high according to that range (it’s different to serum B12). BUT—your folate levels were pretty dire. Do you take folate now?

[Mlinde in reply to Jazzw]

Yes, these are from before I raised it from 100 to 125 mcg. Yes, I take Folate, every other day. There seems to be some disagreement over B12 levels, I used to take it every day but cut it back to every other day and then every third day. Folate levels weren't that bad, 4.7ug/L range >2.9. BTW, the results were from September 2021.

[Jazzw]

Aha, found your post from a few months back.

So…

15 March 2022

TSH: 0.84 mIU/L Range - 0.27 - 4.2

T4: 12.0 pmol/L Range - 10 - 23

T3: 3.8 pmoI/L Range - 3.1 - 6.8

Previous

21 September 2021

TSH: 21.30 mIU/L Range - 0.27 - 4.2

T4: 15.2 pmoI/L Range - 12 - 22

T3: 2.6 pmoI/L Range - 3.1 - 6.8

You know, I think there’s still one heck of a lot of scope to raise your levothyroxine dosage. Your FT4 is at the bottom of the range. It’s too early to know that you can’t convert, because you haven’t got enough T4 in your system to convert!

I reckon a raise by another 25mcg might be warranted.

[Mlinde in reply to Jazzw]

Yes, I've been thinking about raising the level to 150mcg. How long before I'd notice a difference, do you think?

[Batty1 in reply to Mlinde]

Usually you won’t feel things changing after a dose increase for at least a few weeks maybe longer everyone is different. I never feel the dose changes for a very long time and Im not sure if because Im thyroid-less or Im just and odd duck.

[Mlinde in reply to Batty1]

When I upped from 100mcg to 125mcg of T4, I felt fantastic! I could concentrate, get back into writing! It was like before the onset of this disability! But it didn't last...unfortunately, just two days...

[Jazzw in reply to Mlinde]

A few weeks I think. But I think it would be well worth a try.

[Christabel]

I can relate up to a point. Waking early, often after a bad night because of my husband's snoring, feeling ok for a couple of hours and then - feeling not ok.

I also had a bad experience with CBT, but as someone else said, it's not for everyone and a lot depends on the relationship you have with the therapist (I think).

[Lilac200]

Thanks for writing your post, Minde. It helped me to read it today, and this whole discussion, as I'm having a lot of trouble with some similarities to yours. I'm sorry you're having some trouble, too. I do like how you said "T4 moderates the symptoms but doesn't get rid of them." I think that's very true for a lot of us. Today's T-4 meds in the US also give me extra symptoms I didn't have to start with. So do the other thyroid drugs I've tried. It shouldn't have to be this complicated for some of us, to be a thyroid patient.....

[Lovecake]

Hi Mlinde, on reading your post my first thought was that you might be under medicated. Unfortunately not being a good converter really messes us up. I’m a slow converter and levo only would cause several days of fatigue for me it’s so frustrating.

I also struggle with low folate. I read down the answers and see your folate is pretty low. This causes severe fatigue for me too, even if my thyroid levels are good. I too think you should supplement more folate. Do you take methyl folate? It’s supposed to be far better than folic acid.

I did read once that if your folate levels are low then your body can’t use the B12 you have properly (might not have explained that quite correctly, but someone will correct me)

I also got sent to CBT to help me sleep a few years back - didn’t particularly help me either. I found that taking magnesium helped that, plus putting relaxing music on whilst I read before I settle down to sleep. 😴

It’s worth giving everything a try to see if it suits you and makes a difference. ☺️

[Mlinde in reply to Lovecake]

Lovecake, yes I use Methyl Folate, Folic Acid apparently doesn't work. Reminds me, I need to order more. BTW, I read somewhere that Folate is cancer causing? There are 10 different kinds of Magnesium, which one are you using?

[Lovecake in reply to Mlinde]

I use “advanced magnesium” from the Autoimmune Institute. It’s a mixture of magnesiums and seems to suit me.

I like theirs as they don’t add nasty fillers, plus it’s a capsule and far easier to swallow

[Mlinde in reply to Lovecake]

Well I was informed that the best version is Magnesium L Threonate as other forms adversely affect my gut but the last time I used it (by a different manufacturer) it had a rather unpleasant effect, so right now I'm using Pure Magnesium Bisglycinate (by PrizMAG), no fillers, no additives, just the stuff. I take 1 tab, 320mg, a day, tho on the box it says 3-4 a day which I think is overkill! Better actually, to get it in the food, 85% dark chocolate but especially green leaves, kale, spinach, that kind of stuff but it should be organic as industrially-produced veg lacks lots of the trace elements/vits.

[helvella in reply to Mlinde]

As I understand, Magnesium L Threonate can be transported into your brain. Whereas the other forms of magnesium (at least, most other forms) will require other processes before they can get there.

I would not say that Magnesium L Threonate is "best"; it is different.

Posting this as a possible explanation of why Magnesium L Threonate might well have different effects on us.

[Mlinde in reply to helvella]

Correct, it's the reason why I chose it as it's better absorbed.

[Lovecake in reply to Mlinde]

Yes, the one I have has L-theonate in it