Hashimotos 3.5 years. No change in symptoms ! HELP!

[Wendyrmn66]

Hi all you lovely people at Health unlocked!I was diagnosed with hypothyroidism December 2020.

Been on 150mcg since January 2021.

Regular bloods - all within range 🙄

The trouble is ....I still have all the symptoms!

I have never had any relief whatsoever. Past 3 years I've learned to live with the pain and suffering. Diagnosed that lovely word Fibromyalgia! Dustbin diagnosis I was told on here! And it's true!

I have done everything I know or learned on this journey..i.e. gluten free, eat healthy and regularly exercise. You name it I've done it.

Had scans bloods counselling etc to no avail.

I still feel a bloated mess.

I currently doing a specialist training in weights and diet. Been doing this since February 29th.

4 sessions weight training to the max.

Healthy diet with 1700 cals 140g protein daily. Religiously! Lost all of 3 lb. I could cry! Nothing works.

I feel I'm deficient in something but can't find it!

My nails are paper thin and literally tear or split. I read your nails tell you the issue with your health.

I'm grasping at straws ...please help if anyone has advice 🙏

[FallingInReverse]

Hi!

Well you probably know by now that we’re going to ask for results and ranges for all those “ within range 🙄” bloods!

2 years ago it appeared your Bs were low, your ferritin high (yet iron ok, with no CRP to see if inflammation was at play), and maybe most importantly I think you showed high in range FT4 yet low in range FT3 … did you ever investigate conversion issues?

Please share latest specific numbers!

Also - and this is always up for much debate as everyone is different… but many of our ears perk up when people say they are doing any type of exercise “to the max.”

I hope it’s not to lose weight… as it’s likely your low T3 (if it is indeed still low…) that is working against you. And moreover.. many of us (me included, but not everyone ) have stopped rigorous exercise in exchange for walking, yoga, etc . Our bodies need optimal thyroid hormone for rigorous exertion, and putting that stress on your system when under-replaced unfortunately is counter productive.

Let us know your latest test results!

[Wendyrmn66 in reply to FallingInReverse]

Hi FallingInReverse! Thank you and Buddy for responding so quickly.My recent bloods are as follows

TSH 0.62

T4 19.3

T3 4.5

B12 446

Folate 5.1

Iron 28.1

Ferritin -see image

Ferritin history

[Wendyrmn66 in reply to Wendyrmn66]

I've never had an explanation re high ferritin levels. Apparently they're not that high!!!

[TiggerMe Ambassador in reply to Wendyrmn66]

Picked up on your answer to another about retiring early from nursing due to your health... 😕

So your fT3 is your issue it is too low as you aren't converting the T4 very well...

Free T4 (fT4) 19.3 pmol/L (12 - 22) 73.0% (guessed the ranges)

Free T3 (fT3) 4.5 pmol/L (3.1 - 6.8) 37.8%

You could try a small increase in T4 as you have scope but really adding in T3 is going to make all the difference... your folate is dire, B12 could be higher how about your Vit D?

Also your rising ferritin levels caught my eye as my sister has just been told she has hereditary haemochromatosis, apparently most likely to kick in aged 30-60 with menopause being a turning point for many so worth making a fuss as high iron is really bad for your thyroid, brain, liver, joints... giving blood is the way to lower it

[Wendyrmn66 in reply to TiggerMe]

Thanks Tiggerme for your detailed respons😘I've had iron tested for haemochromatosis (normal levels) however my friend next door just diagnosed with it and took weeks for specialised results to come back. Mine didn't! Took 2 days so....think I need to go back to GP.

GP wanted to reduce my levo last time!!

I just need referral to endo I think. I've been under pain management and they've been great.. only phone contact. But they've made recommendations to GP to refer me to endocrine so 🤞

I think T3 should be added too and was thinking of buying it privately.. your thoughts please?

[TiggerMe Ambassador in reply to Wendyrmn66]

🤗Sounds like your neighbour had the genetic test as this takes a few weeks, when my sisters ferritin was consistently high and GP ignored I sent her to give blood and now they have finally taken notice

I confess that I started self treating whilst waiting for my Endo consult, once you know what you need it's hard to just sit on your hands isn't it!! It's easy enough and you really get a feel for what you need and the best timings

You can request the referral yourself but have a look at the TUK list and see if there is one in your area who is T3 aware as you can name who you want to see 😉many are just diabetes minded 😕

thyroiduk.org/contact-us/ge...

GP's only look at TSH and love to reduce your dose

[Wendyrmn66 in reply to Wendyrmn66]

Vit D 125 (50-175) This was last November so possibly worse as I work nights.

[Wendyrmn66 in reply to TiggerMe]

Hi there TiggerMe/FallingInReverse

Thanks for your responses in the past.

I've just got my recent results:

TSH 1.52 ( 0.3 - 4.50)

T4 21.2 ( 10 -22)

T3 4.0 (3.1-6.8)

Thyroid peroxidase 21.2

This was 60.4 October 2022 and 11.6 Nov 23

B12 513 (191-663)

Folate 11.6 (3.89-26.8)

Iron 17.5 (5-35)

Ferritin 196 (15-150)

Oct 2023 it was 342 so coming down!😊

Much appreciated for your advice. 🥰

[TiggerMe Ambassador in reply to Wendyrmn66]

Hello again, I shall tag in FallingInReverse as it needs the @ before the name and for it to turn blue for it to work

Weird TSH range? But the others show your conversion hasn't improved and you really need to see an Endo about getting some T3, depending on your area it is getting easier to get prescribed in some places

Free T4 (fT4) 21.2 pmol/L (10 - 22) 93.3%

Free T3 (fT3) 4.0 pmol/L (3.1 - 6.8) 24.3%

T4:T3 Ratio 5.300 

[Wendyrmn66 in reply to TiggerMe]

Hi TiggerMe thanks for your reply.

My error on TSH range🙄

I've been referred to endo. I'll hopefully get some joy there.

Thanks you for the conversion.

I'll keep you posted!

Ps. Mind you...the GPs don't half prick their ears when I name drop Thyroid UK 😂

[TiggerMe Ambassador in reply to Wendyrmn66]

TSH is usually something like 0.27-4.4 ish

It's great that you have a referral lets hope you get a decent Endo or at lest a trainable one! 🤞🤗

[Wendyrmn66 in reply to TiggerMe]

It was 0.3 - 4.50.God knows 🤯

[Wendyrmn66 in reply to TiggerMe]

Thank you I'll keep you posted!

[Wendyrmn66 in reply to TiggerMe]

Hello again TiggerMe Does T3 at that level 24.3% explain why I have all these symptoms?

It's so frustrating knowing this has gone on nearly 4 years 😪

[TiggerMe Ambassador in reply to Wendyrmn66]

It will account for a lot of them as fT3 is the more active hormone... yep it took me that long to find this forum and see what I needed to do 😕 for some people it's lost decades!

[Buddy195 Administrator]

As FallingInReverse has said, it’s essential to share actual blood test results & ranges, so members can offer comprehensive advice:

TSH

FT3

FT4

Key vitamins (ferritin, folate, B12 and vit D)

It’s so important to remember that when medics say ‘within range’ this may not be the same as OPTIMAL. I would focus on optimising thyroid medication & key vitamins as a priority to restoring your health.

[Wendyrmn66 in reply to Buddy195]

Thank you Buddy195

I've added new results.

[Buddy195 Administrator in reply to Wendyrmn66]

As your results indicate poor conversion, I would look to see an endocrinologist willing to trial combination treatment, prescribing a small dose of Liothyronine alongside a slightly reduced dose of Levothyroxine (as it is not recommended to have FT4 at top of range/ over range). I would look at the TUK list and start a new post asking for a recommendation in your area (but replies to this will need to be via Private Message).thyroiduk.org/contact-us/ge...

If you ever want to alert a member to your post put @ before their user name and it should turn blue. If alerts are switched on, the member will be alerted eg  Wendyrmn66

[Wendyrmn66 in reply to Buddy195]

Awww Buddy195 😅 thank you so much for this advice! I've been referred to endo. Hopefully I'll get sorted. It's NHS endo but if they refuse to do any changes to my meds I'll go private.

I've seen the list of doctors and there's not one in my area so I'd have to travel.

[Wendyrmn66 in reply to Buddy195]

Hi Buddy195 FallingInReverse TiggerMe Just got results back from endocrine appointment. I didn't see anyone btw they just took bloods and had to do 24 urine collection.

My results:

Normal tsh

Normal t4

Normal t3

Normal Liver kidney etc

Normal adrenal pancreas pituitary cortisol

And I quote "all entirely normal"

I could scream! I rang the sec and wouldn't give me results numbers!!

Advised to call GP.

Called GP .... They've not been sent results!

This was 7 weeks ago I had these tests!

Grrrrrrrrrrr!!!!!!!

[Buddy195 Administrator in reply to Wendyrmn66]

I would urge you chase up the endo for full results and ranges via email- you are legally entitled to these! When you have them, do post the results in a new post to alert more members

[Wendyrmn66 in reply to Buddy195]

Thank you Buddy195 I will do. I've made appt with my Nurse practitioner...she's really good and will pull up results from main system. Endo has discharged me because of 'normal' results. In fact his secretary told me he didnt want to accept the referral because GP tests were 'normal' too!! 4 years I've gone through thus thyroid issue. I'm exhausted by it all.

[Wendyrmn66 in reply to Buddy195]

Hi  Buddy195 Went to my GP last week about my results.

Endo didn't even do my T3!! (Redacted abbreviation)

She's wrote back to the consultant.

Is this the normal with endo?

I'm sick as a chip 😪

[Buddy195 Administrator in reply to Wendyrmn66]

If TSH and FT4 are within range, then even endos may not be able to get FT3 tested, that’s why so many here (myself included) test privately to ensure all are tested.

(Previous response edited to remove terms not permitted on the forum)

Do start a new post to alert more members when you have any new results to share.

[Wendyrmn66 in reply to Buddy195]

Thank you I will do Buddy195

[FallingInReverse]

Hi! What great replies : ) Getting T3 looks to be your next step for sure, and thank goodness for TiggerMes input on your ferritin. Alas, with my own ferritin somewhere between 5-15 for the past years I have no input there!

The only other thing that caught my eye was your B12. I’m just getting to this for myself and was surprised that I think we aim for 500 at a minimum.

So although it’s not dire, I’m wondering if you are supplementing to maintain? Here’s the best post ever on Vitamin B : ) healthunlocked.com/thyroidu...

[Wendyrmn66 in reply to FallingInReverse]

Hi FallingInReverse I'm taking Lamberts Methyl B Complex with Folate as methylfolate. Contains B12 so don't take separate. I used to take this before but stopped as no difference to how I was feeling.

4000iu vit D ( I work nights)

Magnesium also bathe in magnesium flakes now and then.

I dont really want to take too many supplements as I've fatty liver 🙄

[FallingInReverse]

Also - I was looking to share this with you but couldn’t find, thank goodness SlowDragon just shared in another post, linked below.

Scroll to the I thought helpful to show you the top ferritin ranges .. as you are definitely over by all means:

healthunlocked.com/thyroidu...

I refer you to other posts as to what to do about it as I don’t have any experience there with my ridiculously low ferritin!