Suggestions in what to do while i wait to hear ... - Thyroid UK

Thyroid UK

141,244 members166,489 posts

Suggestions in what to do while i wait to hear from yet another specialist!?

ThyroidObsessed profile image
22 Replies

Tsh, 10.01 (0.27- 4.5)

Ft4, 20 (11- 23)

Ft3, 4 (3.1- 6.8)

On 75mcg and 100mcg alternate days..

Symptoms:-

Detached feeling like still dreaming scary as hell.

Dizzyness

Brain zaps

Panic attacks

Anxiety/depression on and off all day everyday.

Chest pains

Fainting episodes

Muscle aches

Tiredness/insomnia

Acne

Breathlessness

Shocking memory

Been hypo 9 years tsh was always below 1 and ft4 high in range and always been fine!???

Written by
ThyroidObsessed profile image
ThyroidObsessed
To view profiles and participate in discussions please or .
Read more about...
22 Replies
Rapunzel profile image
Rapunzel

T3 ? Have your meds been changed? What about B12 Ferritin Folate and D3 ?

ThyroidObsessed profile image
ThyroidObsessed in reply toRapunzel

I do not take t3.. and my ft3 level is as above.. all my vitamins are high in range as i supplement and also eat a pound of liver once a week x

SeasideSusie profile image
SeasideSusieRemembering in reply toThyroidObsessed

Please reconsider how much liver you eat. It is high in vitamin A and it's recommended to eat no more than 200g (approx 7 ounces) per week.

nhs.uk/conditions/vitamins-...

ThyroidObsessed profile image
ThyroidObsessed in reply toSeasideSusie

Yeah sorry that meant to say half a pound a week which is just over 200g x

Clutter profile image
Clutter

ThyroidObsessed,

Did your endo ever investigate TSHoma or resistance to thyroid hormone?

ThyroidObsessed profile image
ThyroidObsessed in reply toClutter

She hasnt yet, this is why my g.p has had the sense to contact one of the top endos that he personally knows and is going to send my files and see what he suggests next...

shaws profile image
shawsAdministrator

You are very symptomatic and definitely need an increase in dose. A TSH of 10+ is too high so your dose has to be increased - it is far too low. You are obviously not converting sufficient T3 from your T4 (levo) so you need T3 added either by getting your dose increased or the adding T3 to your T4. We cannot function without T3. We can without T4 which is supposed to convert to T3.

The aim is a TSH of 1 or lower. FT4 is o.k. but FT3 too low.

web.archive.org/web/2010103...

thyroiduk.org.uk/tuk/about_...

ThyroidObsessed profile image
ThyroidObsessed in reply toshaws

Thank you yes i thought t3 was low considering the high ft4 but my last endo says she is happy with my ft3 and i dont need t3 😏

shaws profile image
shawsAdministrator in reply toThyroidObsessed

She obviously unaware that it is T3 we need and not T4. T3 is the Active thyroid hormone and T4 inactive - its job is to convert to T3. Let's hope the Endo is sympathetic and considerate.

ThyroidObsessed profile image
ThyroidObsessed in reply toshaws

Yes i hooe my next endo had more sense 😏

Rapunzel profile image
Rapunzel in reply toThyroidObsessed

Hence my suggestion that T3 may be needed :)

Angel_of_the_North profile image
Angel_of_the_North in reply toThyroidObsessed

Most GPs don't even know what T3 is and wouldn't prescribe because of the cost, so "of course", you don't need it - not at that price"

ThyroidObsessed profile image
ThyroidObsessed in reply toAngel_of_the_North

To be honest my g.p 2 of them have actually said i could probably do with a bit of t3 added in but they said they do not have the power to perscribe it as the endo would have to say that i need it.. hence my g.p contacting a different endo after nothing changing for a year...

SlowDragon profile image
SlowDragonAdministrator

Have you considered increasing to 100mcg every day

What about vitamin D, folate, ferritin and B12 levels

Also, do you have Hashimoto's

ThyroidObsessed profile image
ThyroidObsessed in reply toSlowDragon

Yes i do have hashis.. i am starting to take 100mcg from tomorrow.. last time i did it i had herrendous side effects as my ft4 went way over range!.. so it worries me, but im going to try again as i have been on the alternate dose of 75 and 100 for 10 weeks now and no change to my levels apart from ft4 dropping by 1 point..

ThyroidObsessed profile image
ThyroidObsessed in reply toSlowDragon

Allnmy vitamins are in high range as i supplement and also eat a pound of liver once a week ..

Blue_Bee profile image
Blue_Bee in reply toThyroidObsessed

I just want to say Bravo for eating a pound of liver each week! I take my hat off to you.... sigh... I’m making pate this weekend, going to give it a go :-/ PS and I hope you feel better soon. I have Hashimoto’s and conversion issues. T3 added to my T4 was a turning point for me in my treatment. Ingrained depression and pea-soup brainfog lifted within days. I still had/have a long way to go to getting well. I’m 50% well now on a mix of NDT and T3, and will get 80-100% I’m certain once I get the right dose and mix from my endo. If you have conversion issues, you Need T3 in some form — straight and/or NDT.

As for your Last Endo being happy with your levels (meanwhile You’re feeling rubbish) — What is she thinking?!! Sounds like you need a Next endo ;-) Good luck with it, if you can down a weekly pound of liver, you can do Anything!!

BBxxx

ThyroidObsessed profile image
ThyroidObsessed in reply toBlue_Bee

Haha sorry i meant to say half a pound!! 😁.. not my best of meals but iv dedicated myself to getting better the natural way .. plus i get badly constipated using iron tablets so...

My g.p has very kindly and wisely agreed that my endo for the lasy year has just put my levo up and down to no avail as my ft4 just goes way over causing horrible side effects and my tsh still stays high, so my g.p had now contacted one of the top endos that he is personally friends with and is sending my files over to see what he suggests..

I presonally think with a tiny little bit of t3 added i would be out of this hell hole...

Either way i will not give up.. i am at the doctors at least once a week! 😏 xx

Blue_Bee profile image
Blue_Bee in reply toThyroidObsessed

Good on you! I’m a bit like that too. This morning I’m having a smoothie with added gelatin and home-made SCD yogurt for breakfast. Trying to heal my gut. I feel like I want to do everything I can, while getting the best medical support at the same time. My 2018 motto is “Determined to get Well”.

Sounds like you have an excellent GP and what a difference that makes!

BBxx

SlowDragon profile image
SlowDragonAdministrator in reply toThyroidObsessed

The fact that Teva caused you such terrible bad reaction (like many other people) possibly severely upset your gut lining.

Inadequately treated Hashimoto's can cause serious affect to gut lining.

Many of us find it essential, in part perhaps because Levothyroxine mono therapy does not fully alleviate symptoms, especially as so many medics keep patients significantly under medicated

So are you on strictly gluten free diet?

(And/or dairy)

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ask GP for coeliac blood test first

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

Jazzw profile image
Jazzw

What are your B12, folate, Vit D and ferritin levels?

I know you’ve said in other posts that they’re good - but what are they?

Low ferritin can often be a factor in low conversion.

ThyroidObsessed profile image
ThyroidObsessed

I do have hashis but if its a flare do they last a year!?..

All my vitamins levels are at the top part of the range as i supplement and also eat half a pound of liver a week x

Not what you're looking for?

You may also like...

Now what do I do 🤦‍♀️

really could do with some advice and support again. I just don’t know where to go from here....

What to do

Hi all I have suspected a thyroid issue for years. 7 years ago I was diagnosed with cfs. My tsh...
veggielove profile image

Don't do what I did!

Been a lot of discussion about giving up levo. I almost did. Had been on levels up to 100mcg per...
Lalatoot profile image

Consultant giving the run around what can I do

4/10/13 bloods tested normal 9/10/13 tsh normal but ft4 11.4 ( 12+ range) 20/11/11 dexamephasone...
Ladytara17 profile image

TSH 6.54. What do I do?

I had my private results yesterday and I am a little confused. My previous results were January...

Moderation team

See all
Jaydee1507 profile image
Jaydee1507Administrator
PurpleNails profile image
PurpleNailsAdministrator
SlowDragon profile image
SlowDragonAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.