Hypothyroidism & Test Result help Plz

[Toto88]

I’ve been having various problems over the years since 2019 ! I was diagnosed with Hypothyroidism back in 1995 & im now 54 & female.

I have seen a private endocrinologist before & am thinking again of recontacting again because of how unwell I am.

Had my Thyroid panel done on 25/03/2024 first thing early in the morning on a empty stomach . My results have just come in but told normal -

TSH - 6.95 (Range - 0.3-5)

T4 - 8.7 (Range -7.9-16)

T3 - 4.7 (Range 3.8-6)

I’ve put on more than 1/2 stone - V tired - Painful burning leg pains & muscle twitching - Dry eyes - Tinnitus worsened - Constant occipital neuralgia pain & alloydynia - Stiff shoulders & neck - V cold 🥶 all the time - feet are like blocks of ice - I’ve noticed my legs have swelled up a lot where even at 11 stone this is v unusual !! Constipation - nausea ! My last iron test showed I was slightly under - this done on 3rd March 24 & so retested but now is saying normal ? I sometimes have v low Vit D & have to be put on prescription until it’s at a better level then I take Vitamin D supplement every day ! I’m taking 50mcg Levothyroxine by Accord every other day at the mo because when taking every day my leg pain worsens ? I’m not sure 🤔 if after 30 years the levothyroxine is actually working properly anymore which is why I need to consult with my private endocrinologist - I’ve been told you can become slightly sensitive or allergic to it after awhile ! I take magnesium every day & am considering Vit E & Vit B Complex ! I’ve just started taking the Ferrous Sulphate 200 mg every other day for Iron because I do think I’m still low even though it now says it’s normal on the last test ? I didn’t start the tablets until after the blood test. I would also like to mention that back in 2020 my private endocrinologist tried me on liquid form & T3 but I wasn’t on it long & had to pay for it so I gave up which was probably silly of me ? I may have to retry all of this again. Anyhow if anyone plz can advise me about my recent test results I would be v grateful - Thank you

[SovietSong]

Your frees are very low T4 40% with T3 only 9% through range.Low T3 is whats causing your long list of symptoms.Its also recommended on here that TSH be under 1 or at very least under 2.Yours is quite a way off at almost 7.That current levo dose of 25mcg is the starter dose for most people.Would increase to 50mcg daily be worth another try then retest in 8 weeks? (most people end up needing between 100-150mcg daily)as well as getting vitamins to decent levels.

[Toto88 in reply to SovietSong]

Thanks for replying to me - I’m definitely going to organise an appointment with the private endo ! But maybe get my cortisol tested beforehand!!

[Hidden]

I'm no expert but I am just learning that my issues taking thyroid hormones is likely caused by adrenal dysfunction and a lot of your symptoms sound very similar to mine. Please consider getting a cortisol test to see if this is your problem. i just wanted to share this as i wish i knew about it sooner- i wasted so much time increasing my thyroid medication only to feel even worse.

[Toto88 in reply to Hidden]

I did a few years ago have v low cortisol to the point they thought I may have Addison’s disease but I had the test done & the nhs endo said it was ok !!! I may ask this to be tested again - Thanks

[Hidden in reply to Toto88]

Well this is super interesting and I would say likely the cause. I currently can’t tolerate any thyroid meds due to my cortisol issues but am stuck waiting on test results!!

If I were you I would request NHS repeat testing, I’m so sorry they just gave you the brush off!

[greygoose]

Who said those results were 'normal'? Usually, when a doctor says 'normal', what he means is: in range. But your TSH isn't even in-range. It's way over the top of the range. So how, in anybody's book, can that be normal? They play merry hell with your dose if your TSH is even only slightly under-range but just ignore it when it's massively over-range. They need to get their acts together and work out if ranges can be ignored or not, but it should be the same reaction to both under and over. Actually, a 'normal' TSH - i.e. one that most people have - is around 1, and the ranges are all very, very wrong.

I’m not sure 🤔 if after 30 years the levothyroxine is actually working properly anymore

Levo is a hormone, not a drug. It's the thyroid hormone T4, so it can't not work. But what can happen is that your body is unable to use it correctly. Possibly your conversion of T4 to T3 has got worse.

T4 - 8.7 (Range -7.9-16) 9.88%

T3 - 4.7 (Range 3.8-6) 40.91%

Although, the percentage say the opposite. Your FT3 is very much higher than your very low FT4. Which is not 'normal' at all. Do you have Hashi's?

[Toto88 in reply to greygoose]

The NHS lab - which we all know is a complete waste of time usually but I needed the results in order for the private endo to see !! GPS shouldn’t even be dealing with this - absolutely ridiculous as they have no expertise in this !!

[greygoose in reply to Toto88]

Neither do endos, I'm afraid. In fact, they're sometimes worse than GPs!

So, do you have Hashi's? Have you had both Hashi's antibodies tested: TPOab and TgAB?

[WarriorPebbles77]

Hi! Sounds similar to me. I was "diagnosed" in 1995 age 14. I will not advise this but I want to share something. I am now 12 days off the medication (The doctor doesn't know yet, I will tell him After he checks my levels). I believe big pharma(toxic medication/adverse side effects) made us worse. I was told that the doctors lie to us(I believe that to an extent). I am going to trust God in my healing process, and not Big pharma(Pills). (See: Jeremiah 30:17). Try to take your vitamins 2-4 hours after the Thyroid pill. Only take what helps you. It is frustrating, but we will be okay. Stay hydrated, and get in some exercise. Good luck!

[Cornwaller]

Your 50mcg end is simply too little and you are ill because of this. Your bloods are not normal b

[SlowDragon Administrator]

Reread all your previous posts

You’ve never been on high enough dose, even when previously on 75mcg plus T3

Aiming for TSH around or under 1, and Ft3 at least 60% through range

Increase dose Levo to 50mcg daily

Retest in 6-8 weeks

Likely to need several further increases in dose over coming months

Guidelines on dose by weight is that eventually when adequately treated will be approx 1.6mcg Levo per kilo of your weight per day

11 stone = 70kg

70kg x 1.6mcg = 112mcg per day

when were B12 and folate last tested

Are you taking daily vitamin B complex

Have you ever tested TG antibodies

[Toto88 in reply to SlowDragon]

I have tried to increase to 50 mcg daily & I feel worse ? The T3 I will have to try again & speak with Private Endo. - but I’m feeling like previously posted that I’m getting bad side effects- I tried for two weeks on 50 mcg & I felt even worse !!!! I am on Vit D & magnesium daily - will be starting Vit B complex today & Vit E !! Also taking ferrous sulphate every other day ! Whenever I have the antibodies test it always comes back normal ! I even tried 75 mcg daily but I don’t know if because the two brands were different but Accord Levo doesn’t do 25 mcg ! Is it true that if you’ve been on Levo for nearly 30 years it can stop working properly after awhile ? I have considered Armour Thyroid but difficult to get hold of -unfortunately as you are well aware - Thanks

[SlowDragon Administrator in reply to Toto88]

As you are extremely hypo you probably need to increase very SLOWLY

adding 12.5mcg daily or even 6.25mcg daily

Wait 5-8 weeks before increasing again

Once you are on high enough dose Levothyroxine to bring Ft4 to top of range …… and all four vitamins at GOOD levels

If, FT3 remains low look at getting T3 prescribed alongside Levothyroxine - starting SLOWLY

[Den_And]

Ive had similar symptoms of feeling cold, swelling knee joints, and chronic fatigue, this 10 months after thyroidectomy. Was on 100 mcg of levothyroxine for 9-months and then endocrinologist upped to 125 every alternate day, then to 125 every day. Had another appointment this week & with all my symptoms in particular the fatigue & swelling knees how on 150mcg. Also doing a T3 test to check conversion process is happening. It does sound from your symptoms that a higher doze of levothyroxine may be required. TSH slightly elevated.

As I have no thyroid I’m on calcitriole for Active Vit D to support calcium absorption ( with some calcium supplements). That took some time to balance serum calcium & calcium in urine. Not that this would be an issue for yourself unless your parathyroid glands are not producing enough parathyroid hormone to keep your calcium stable.