normal TSH high Free T4: I have been taking... - Thyroid UK

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normal TSH high Free T4

jcarlton76 profile image

I have been taking levothyroxine for 5 years but have remained symptomatic this entire time. Now my TSH is in the normal range and so is my T3 but my T4 Free is high. My symptoms have been debilitating. Extreme fatigue, joint pain, muscle aches, cold, gaining weight, dry skin, etc. I see my endocrinologist in a couple days but I am concerned she will brush me off once again. Im sure she will lower my dose and pat herself on the back. I was told that my pituitary is not communicating with my thyroid properly but somehow that and my very real symptoms dont seem to be a concern to my Drs. Has anyone else experienced and over come this issue? I wish drs would treat the symptoms and not the numbers! Thank you

20 Replies

Welcome. Being in the normal range is no good. Your results have to be at the correct place in the normal range for you.As you are still unwell something is not right .

To be able to offer opinions and help we would need to know your actual results and the ranges.

jcarlton76 profile image
jcarlton76 in reply to Lalatoot

Hi thank you so much for responding. I am so grateful for any help. My tsh is 3.10 and the range is .4-4.5 and my free t4 is 2.0 and the cut off for normal is 1.8. My dose of levo is so high but my tsh has never been under 2.85. I have noticed the lower my tsh the less severe my symptoms but we cant seem to keep any of my numbers stable or my symptoms less severe for very long

Lalatoot profile image
Lalatoot in reply to jcarlton76

Ft3 is the missing piece of the jigsaw. It needs to be tested along with TSH and ft4 to see where they are in relation to one another. If you are not converting the t4 to t3 efficiently then this will cause you to be symptomatic. Also worth looking at vitamin levels. As a rough guide they need to be a minimum of half way through range .

jcarlton76 profile image
jcarlton76 in reply to Lalatoot

Oh sorry. My free t3 is 3.5 and range is 2.3-4.5. So that seems pretty median range. Does that make sense with debilitating symptoms and high ft4? And i know high t4 can indicate hyperthyroid but i dont have those symptoms. Idk its a head scratcher. I just wish there was an answer. I have changed my diet i dont eat gluten or dairy or sugar i take a good vitamin that has not a lot but some selenium i have explored all the other possible reasons i could be feeling like this such as colonscopy, diagnostic laperotomy, anti depressants (thought im really not depressed) i eat so clean and healthy i have seen a rheumatologist....i would do anything to feel normal but it all just seems to point to thyroid but they always say my numbers r normal (except right now)and send me on my way.

If my TSH was 3.10 (as a hashimotos patient) I’d be on the floor or in bed!

For a hashimotos/under active thyroid patient, I need my TSH to be below 0.6 to feel well. The t4 and t3 need to be 75% up through the range. I’m not sure your endocrinologist knows about hashimotos 🤔!! You are clearly undermedicated.

Sounds very much like you're not converting T4 to T3 very well. It's low T3 that causes symptoms.

You say your FT3 is 'in the normal range', but you haven't given us the result and the range, so we can't see how well you convert.

Why would your endo want to reduce your dose when your TSH is so high? The aim of thyroid hormone replacement is to get the TSH down to 1 or under. But, you can't do that if your FT3 is low, and if she reduces your levo, your FT3 will also drop. And your TSH will rise even higher.

I have noticed the lower my tsh the less severe my symptoms but we cant seem to keep any of my numbers stable or my symptoms less severe for very long

Yes, that would be because your FT3 has risen, which would cause your TSH to drop. And if the FT3 is higher, the symptoms would be less severe. These things are all tied together. But, it's not the TSH that causes symptoms. TSH itself doesn't make you feel anything.

I was told that my pituitary is not communicating with my thyroid properly

Whoever told you that doesn't know much about how it all works. Your pituitary won't be communicating with your thyroid at the moment because you're taking exogenous hormone, and the thyroid will have stopped working. It's called 'Thyroid Hormone Replacement', not thyroid hormone top-up. The thyroid doesn't continue to produce hormone whilst you're taking exogenous hormone.

If you came off the levo completely, your TSH would rise and most certainly would communicate with your thyroid - it's by means of the TSH - Thyroid Stimulating Hormone - that the pituitary communicates with the thyroid. But, your thyroid would have difficulty responding, because you're hypo.

Having said that, I'm assuming that you have Primary Hypo, where the thyroid is the one not working properly. But, perhaps you have Secondary Hypo, where the pituitary doesn't work correctly. Or even Tertiary Hypo, where the hypothalamus is to blame. Do you know what your TSH was when you were diagnosed?

But, I don't think that's the problem now that you are on thyroid hormone replacement. I think the problem most probably is poor conversion, and you might need to take some T3 with your levo - if you have an understanding endo. :)

jcarlton76 profile image
jcarlton76 in reply to greygoose

Wow that was great info! Yes i dont believe my endocrinologist knows very much about the endocrine system lol. My free t3 is 3.5 and normal range is 2.5-4.5 my tsh when first diagnosed was 5.19. I was taking 250 mcg of levothryoxine and my labs came back with high free t4 ( i have no idea about my ft3) so they lowered my dose to 200 mcg and i have been on the for 2 yrs, telling mr dr this entire time that i am still symptomatic. I just figure if history is any sort of indicator she will try to lower my dose. I will definitely advocate for the t3 meds. And i really appreciate you taking the time to give me such helpful and knowledgeable information.

greygoose profile image
greygoose in reply to jcarlton76

OK, so your TSH wasn't that high on diagnosis, so maybe you do have a pituitary problem. And, it is important to know because the pituitary produces a lot of hormone, and the others could be low, as well, and causing symptoms. Have you ever had any other hormones tested?

jcarlton76 profile image
jcarlton76 in reply to greygoose

My cortisol was low but they did an ACT stimulation test and that came back normal. I have an mri on my brain to check my pituitary, she thought i had maybe a tumor. When all those things came back nirmal she said i was fine and told me to come back in 6 months. I have had fsh and prolactin tested and those were in normal range but i dont know the numbers now. Is there a way to check for pituitary issues or its the same treatment?

greygoose profile image
greygoose in reply to jcarlton76

Well, all the ATCH test told you was that there was nothing wrong with your adrenals, but they weren't getting the correct stimulation to produce cortisol. So, as far as I know, that does point to a pituitary problem.

Secondary hypo is treated the same as hypo due to any other cause. But, it's the other hormones that are the problem. And your endo doesn't seem to understand that. FSH and prolactin being 'in-range' doesn't mean much if they were low in range - another thing doctors don't understand.

You check for pituitary problems by testing the other hormones - like Human Growth Hormone. And if that is low, that could be affecting your conversion. I think you need to find a doctor that specialises in pituitary problems.

jcarlton76 profile image
jcarlton76 in reply to greygoose

Thank you so much. I have learned so much from this group all ready. I will definitely look into that!

greygoose profile image
greygoose in reply to jcarlton76

You're welcome. :)

SlowDragon profile image
SlowDragonAdministrator

How do you do your blood tests

Thyroid levels should ALWAYS be tested as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Do you always get same brand levothyroxine at each prescription

If yes….which brand

What vitamin supplements are you currently taking

When were vitamin levels last tested

Do you have autoimmune thyroid disease also called Hashimoto’s diagnosed by high thyroid antibodies

If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease). Ord’s is autoimmune without goitre.

About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue too

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

List of hypothyroid symptoms

thyroiduk.org/if-you-are-un...

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

Very important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

Low vitamin levels common as we get older too

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

They told me I have acquired hypothyroidism tho they did test for hashimotos. My dad had antiplastic thyroid cancer and i have several aunts and uncles that are hypothyroid. We all take levothryoxine but at different doses. I do have a cousin who takes 2 different thyroid meds. I take Euthyrox (levothryoxine sodium) 200 mcg and have been on this particular med/does for 2 yrs. I take a bariatric vitamin because i eat a very restricted diet. I have only had my vitamin d tested recently. Thank you for all those links. I will check them all out. Also i really appreciate the list of tests. I have wondered if i am getting the right tests.

SlowDragon profile image
SlowDragonAdministrator in reply to jcarlton76

I take a bariatric vitamin because i eat a very restricted diet.

So it’s essential to test vitamin D twice year

Folate, ferritin and B12 at least once a year

Are you lactose intolerant and on dairy free diet ?

Im not lactose intolerant but i cut most dairy. I fudge sometimes. I have had my vit D tested and was low but not my other vitamins. Its on my list of requests for next dr visit. Thank you

Hi I have just the same from the GPS. I am getting worried because I don’t know what to do about this I need help too don’t know who will help us there must be a lot of us putting up with them they don’t seem to be able to help us. I hope you are able to get some help we have to keep going some days are better than other days. I have an old rescue dog I cannot give up he needs me as much as I need him he’s name Sam I love him to much and he loves me I am thankful that I have got him don’t know what I would do with out him do you have any pets I know what some people have done to dogs and cats I don’t understand how they can do so much bad things. I think we’re just not going to let them get a way with not helping us to be able be well enough to enjoy life I do so hope you feel well and keep trying to get some where with these GPS. All the best to yourself.

jcarlton76 profile image
jcarlton76 in reply to Fedup5

I am so sorry u are suffering too! I have pets and kids. I am a dog trainer and i haven't been able to work with many clients the past few months because it has gotten so bad. My sister is a nurse who deals with insurance companies. She is going to my appt with me friday and armed with her and several peer reviewed articles and advice i have gotten from thia group I am going to try to educate the woman who is supposed to be my specialist and try to get some help. I will let you know if any of my tactics work. It should be a crime to sell yourself as a specialist in a field and yet let so many people suffer! Please kiss your doggie and take care!

Ditto, almost exactly, except you can add high blood pressure! My GP told me to go private if I want to get the right treatment! So for 13 years I've been misprescribed, It's totally outrageous that I should then be asked to go private I want to get the right treatment. How long this going to go on for?

jcarlton76 profile image
jcarlton76 in reply to Mlinde

This appt fri is my last effort with my endocrinologist! I cant afford it but i will have to try one of those holistic places because right now i feel disabled and i cant go on indefinitely like this! I hope you find what works too!

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