Need something to cling to: Hi all, I’m at a... - Thyroid UK

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Need something to cling to

FoxyTed profile image
38 Replies

Hi all,

I’m at a loss, in my previous post I had been started on a very low dose of T3 - 2.5mcg x twice daily this was a disaster I could not function with all day headaches and dreadfully low mood and anxiety. My Thyroid doc said I could try increasing the 50mcg T4 to 75, three days in and same thing again. He did say he suspected an adrenal problem for reason to not tolerating any T3, he is trying me on Adrenal cortex/glandular to see if this helps before trying T3 again. I also take Ashwaghanda and seriphos which have helped along with the 50mg of T4 but still am far from right.

Anyone had a similar issue and found a way, I know I really need my T3 of (3.7) 3.1-6.8 increased and need some positive stories please!

Thanks so much

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FoxyTed profile image
FoxyTed
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helvella profile image
helvellaAdministrator

One factor which crops up time and again is being iron deficient. Often indicated by a low ferritin level but really needs a more complete set of tests.

helvella - Iron Panel

A short article about explaining what is meant by "iron panel" in relation to blood tests including some reference interval (range) information.

helvella.blogspot.com/p/hel...

1tuppence profile image
1tuppence in reply tohelvella

An interesting read, thank you helvella. It is only recently that I've learned infection can cause ferritin to rise. I've been having blood tests ....non- thyroid related....and my ferritin dropped from 30 to 10......then dramatically rose to 120. I have had a chest infection which it seems is the cause of the jump. I've since been diagnosed as being iron deficient anaemic.

helvella profile image
helvellaAdministrator in reply to1tuppence

Iron levels are so very important for handling thyroid hormones.

My iron document just might help as well:

helvella - Iron Document

This is a summary of what I have read up and found out about iron supplements over the past few years. I am not in any way medically trained. You are strongly encouraged to check every detail before making any decisions for yourself.

Last updated 02/04/2024

helvella.blogspot.com/p/hel...

1tuppence profile image
1tuppence in reply tohelvella

Thank you. There's a problem for me in that any of the iron supplements I've taken thoroughly upset my digestive system, from one end to the other, and meeting in the middle! My GP has prescribed a new brand....Feraccru - iron as ferric maltol. I have a pre-op appointment tomorrow and will take advice on taking them. I feel I can't cope with an op and also upset digestive system at the same time.

helvella profile image
helvellaAdministrator in reply to1tuppence

That is why my iron document is so positive about haem sources! Few seem to have tolerance issues with haem iron.

Yes, some other products such as the one you mention, might also avoid stomach issues.

j9j8j7 profile image
j9j8j7 in reply to1tuppence

Have you tried heme iron (provided you aren't a vegetarian). I had horrible trouble with most iron supplements but have no issues whatsoever with heme iron from Three Arrows.

I could be wrong but I believe Seriphos is a supplement used to lower cortisol levels…so it may be worth stopping that if your dr believes your levels are low.

amala57 profile image
amala57

I can't tolerate synthetic T3. It's too fast acting. It made me feel very unwell even in tiny doses. The only T3 I can tolerate is in NDT. It seems to have a longer lasting action. I still have to take small doses 4 x day. But I need T3. Especially to help me sleep.

arTistapple profile image
arTistapple in reply toamala57

That is an interesting choice to help with your ‘intolerance’ to T3. I have been toying with the idea of NDT recently - thinking that I need less T4 but more T3. It’s reputation for being ‘gentler’ is a big factor in my thinking. However I am trying to sort out my ‘diet’ at the moment. One thing at a time.

Please see my answer to FoxyTed about my reasoning.

Easylover profile image
Easylover in reply toarTistapple

I didn't see the reply on your "reasoning" . I'm tired but I felt maybe you were more open to what I wanted to share. I didn't know if I should put it here or make a new post. I'm envious for anyone who lives in the UK because you can get Metavive II Porcine Thyroid Complex 80mg (90 Caps). They don't ship to the US. I'm bummed. I found out about the company who supplies it accidentally on a FB group. It's all pure n natural. My last bottle of Thyroid-S from Thailand was insufficient. The pills are hard as rocks unlike previous purchases. There are no other alternatives that I've found so far. Metavive sounds like the cats meow. I feel like I just can't win and I need to. I have to keep going n keep producing. This is my life n without proper thyroid medicine, it's just no good! One of the administrators, verified that it is a legitimate company.

arTistapple profile image
arTistapple

Another overlooked problem with T3 is the very uptic in metabolism it creates, I think. If you have other metabolic issues T3 can ‘exaggerate’ them I have found. Right off the scale for me.

Headaches are classic metabolic symptoms. Both low and high blood sugar at work.

Attention to diet I feel, is even more crucial when attempting T3 - maybe even more basic and important in the short and long term as adrenal issues for some people. Although chances are both need attention.

At least diet is something we ourselves can control.

T3 increased my insulin sensitivity but I did not adjust well or quickly enough for this eventuality.

Me too! I really need my T3 and I must find a way to be able to take it.

Sleepman profile image
Sleepman in reply toarTistapple

+1 ArTistapple. Powerful stuff.

No idea about adrenals.

Going from 6 to 12 mg of T3 took my blood sugar very low. I ended up splitting the dose. After a few weeks I was ok taking it one go though.

I had continuous glucose patch thing for a while after finding it with my test strips.

Sugar would drop too low after 3 or 4 hours. [2 to 3 - should be over 4]

You could check with finger prick test strips though, these are a lot cheaper.£15ish vs £50.

It helped me to muddle through.

arTistapple profile image
arTistapple in reply toSleepman

Yup, I did not understand, especially after starting T3 I flipped into a Type 2 Diabetes diagnosis. Previously I had been on the ‘cusp’ for decades - a sure sign I now understand, of hypothyroidism (in my case undiagnosed for decades).

However there have been a number of reports on the Forum of similar happenings of people going onto T3 and their Hba1c levels suddenly increasing, so one way or another there does seem to be a necessary reckoning when this happens. Naturally different folks get different symptoms with this. Mine is nocturnal SVT amongst ‘hangry’ episodes which I seem to have experienced forever.

Anyway I was searching for monitoring of sugar levels just today and yesterday. Apparently if you take up the ZOE method all that can get taken into consideration. I feel monitoring would be useful to me as I seem to have lost that ‘message’ from my body. Of course nocturnal SVT is even more drastic, because you are aroused from a deep sleep and don’t know which way is up!

I might just look more closely at your method.

As I mainly eat well, I thought I had this sussed. I am learning that sometimes what you resist (knowledge/information) persists. I am beginning to use it as a tool for discovering what a twit I can be!

I now need to get my head around ZOE or similar.

Thanks for the tip!

Sleepman profile image
Sleepman in reply toarTistapple

healthunlocked.com/thyroidu... arTistapple

I posted here about the low blood sugar.

I used freestyle Libra 2. It works for 2 weeks.

Showed me my Hba1C was ok and how I respond to various foods. Booze was bad. It put my mind at rest.

[ Edited by admin because neither the link nor the call out/mention worked. You must have a space or new line between them. ]

arTistapple profile image
arTistapple in reply toSleepman

Obviously I am unsure what admin is getting at here. I clicked on the blue phrase thinking I was going to see a reference from you. Quickly noted it was a bio and started to read it without checking whose bio. OMG this person had exactly the same issues as me! I then checked whose bio I was reading - mine! Honestly I burst out laughing. Cheered me up no end!

Anyway on to the serious stuff, I guess the booze angle was no surprise? Definitely ‘pure’ sugar for me and should be no surprise but it seems I am always surprised. All sorts of ‘inflammation’ from that. However there will be other more subtle food sources too that I would benefit from knowing about! I just hope I can get my head around the technology involved in Libra 2.

I have looked at it before, thinking along the lines of “wouldn’t it be great if we had something similar for thyroid hormones”. After having listened to that webinar by Prof. Leilani B. Mercado-Asis, I am thinking that hypo patients with Type 2 Diabetes in their picture could find this extremely useful. She implied (I think) that monitoring of diabetes would seem to give an indication of thyroid status of thyroid patients. Don’t quote me on that because I could have got that wrong.

Is there anything else you want to add that I should know about, after admin having to sort out the technical difficulty?

Sleepman profile image
Sleepman in reply toarTistapple

healthunlocked.com/thyroidu...

Not sure what happened.

Buddy195 profile image
Buddy195Administrator

What brand of Liothyronine were you prescribed? I had terrible anxiety and headaches when given Roma and filled in a yellow card/ now have written on my preached brand I can tolerate best.

FoxyTed profile image
FoxyTed in reply toBuddy195

Buddy it was Thybon

Thanks everyone for kind replies.

Hi FoxyTed, When you say Thyroid doc, what do you mean? Have you managed to get to a specialist or is that a sympathetic, knowledgeable local doctor? Sorry I’m only asking a question but I’m desperate to feel better and struggling with my local doctors who don’t seem to be able to offer more than blood tests that always seem to be ‘acceptable levels’ so I’m not getting anywhere

Enuffisenuf profile image
Enuffisenuf in reply to

I made a list of symptoms and handed it to my GP. I always forget half of them when I'm sat in front of a GP. Slightly different circumstances to you as I'd never had a blood test for hypo, but it did the trick and within a week I'd been tested diagnosed and was on T4.

I still list current symptoms and hand over the list when I'm trying to get them to hear me.It might help to convince your GP that their 'acceptable' may not be your 'acceptable'

redhead41 profile image
redhead41

I think ashwanganda is not recommended for thyroid patients although I don't remember why.

Sunflower64 profile image
Sunflower64 in reply toredhead41

palomahealth.com/supplement...

ThankfulWanyana profile image
ThankfulWanyana

So sorry to hear of your difficulties. I'm not able to give information specifically about medical side of things . But there is always hope. I'm happy to share with you more but I can only use voice to communicate with and voice recognition programme for typing is sometimes quite fatiguing . I don't know if there's a way I can communicate vocally slash audibly?

Sunflower64 profile image
Sunflower64

Aren’t ashwagandga and seriphos used to lower high cortisol? Does your doctor suspect high or low cortisol?

FoxyTed profile image
FoxyTed in reply toSunflower64

My cortisol rose very high from 8am to lunchtime. Think it’s time to retest cortisol

arTistapple profile image
arTistapple

I think the problem with Ashwaganda (and other Adrenal ‘supports) is that individual patients have individual reactions to it. Some people who need to lower their levels, it increases it and vice versa in people trying to raise it. It’s very individual. If you suspect it’s not helping (or even making you worse) stop it and give yourself time to see if you improve a bit.

FoxyTed profile image
FoxyTed in reply toarTistapple

I was improving on these supps, it was when I added the T3

Easylover profile image
Easylover

healthunlocked.com/redirect...

Foxy, Maybe I copied the link wrong. I don't know how to do it. It essentially says that starting off on a too low a dose of T3 can make you feel worse and to raise it every 2 to 3 weeks. It's from an old post 10 yrs ago. Information still applies today. Easy

FoxyTed profile image
FoxyTed in reply toEasylover

Thanks Easy! What is thyroid s?

helvella profile image
helvellaAdministrator in reply toFoxyTed

Have a look at my World Desiccated Thyroid document:

helvella's medicines documents (UK and Rest of the World) can be found here:

helvella - Thyroid Hormone Medicines

helvella has created, and tries to maintain, documents containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world. There is now a specific world desiccated thyroid document.

I highly recommend viewing on a computer screen, or a decent sized tablet, rather than a phone. Even I find it less than satisfactory trying to view them on my phone.

helvella - Thyroid Hormone Medicines - UK

The UK document contains up-to-date versions of the Summary Matrixes for levothyroxine tablets, oral solutions and also liothyronine available in the UK. Includes descriptions of tablet markings which allow identification. Latest updates include all declared ingredients for all UK products and links to Patient Information Leaflets, etc.

dropbox.com/s/bo2jzxucgp9hl...

helvella - World Desiccated Thyroid

Contains details of all known desiccated thyroid products.

dropbox.com/scl/fi/gx6dmz5i...

helvella - Thyroid Hormone Medicines - RotW

Contains details of all levothyroxine, liothyronine and combination products - excluding desiccated thyroid products. Details available vary by country and manufacturer.

The link below takes you to a blog page which has direct links to the documents from Dropbox and QR codes to make it easy to access from phones. You will have to scroll down or up to find the link to the document you want.

helvella.blogspot.com/p/hel...

Easylover profile image
Easylover in reply tohelvella

I really could get the links to work properly. I'm in the United States. I was just curious. Thanks anyways.

Easylover profile image
Easylover in reply tohelvella

I guess I need to get on a computer instead of my phone. Thsnks!

Easylover profile image
Easylover in reply toFoxyTed

Natural desiccated thyroid hormone NDT from pig aka porcine. But I was just referring to T3 . NDT has t3 a and t4. Thyroid s is a brand sold from Thailand. . Armour is another brand.. there's lots of brands

arTistapple profile image
arTistapple in reply toEasylover

Very interesting article. Thank you Easylover.

Easylover profile image
Easylover in reply toarTistapple

You're welcome. Thank You!

FoxyTed profile image
FoxyTed in reply toEasylover

Tks Easy, thing is I could not go on taking it I was in such a bad place, it’s so frustrating! Tk u

Easylover profile image
Easylover

"Raw thyroid and thyroid - s

Ritaritarita

10 years ago•17 Replies"

healthunlocked.com/thyroidu...

Easylover profile image
Easylover

Dear Foxy, how long did you try it for, how many days? Did you try to take it at different times of the day? You do not have to have an empty stomach with T3. I never got to try it because I got ripped off by listening to a scam artist and it's really my fault because I didn't follow the rules and get a hold of an administrator before I bought the T3 supposedly. I only lost 56 bucks plus the fee. But I woke up thinking about you and there was a comment on this post where the woman said she couldn't handle T3 so she got on NDT which is natural desecrated thyroid. She said the T3 in NDT was more gentle.That's what I take. I wasn't going to not take it I was just going to add T3 to it. I feel that maybe you should try again and not take it with the T4. Take it on a full stomach. And monitor what you ate what you didn't eat what time you got up what time you went to bed and what time you took the T3. You're supposed to be monitoring your temperature and your heart rate half hr to an hour after taking T3. After hearing your story I'm actually glad I didn't get any T3. I'm sorry you're going through this honestly. I care about you! Easy

Plus, if you get on NDT just forget about testing the TSH...instead only focused on T3 n T4. Good luck n God bless you! Hoping n praying you feel better soon. It's been a long haul for all of us but it's seems even harder for you. Maybe, step out of the box, experiment a little bit n realize a doctor may not heal you and you may have to take it into your own hands like many of us on this forum and other groups like...stop the thyroid madness...has had to do. I wish you peace. Don't worry you'll get through it. Love, your friend Easy

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