T4…Going up slowly, TSH a rapid rise? - Thyroid UK

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T4…Going up slowly, TSH a rapid rise?

Tea7light profile image
17 Replies

Blood test taken on 26-11-24.

My T4 was not conforming it has been slipping down, I do have foggy periods, fridge staring, feeling cold & v.tired, etc

Now T4 is creeping up as :-

I ‘m keeping a tight regime on when and how I take it.

No food 1 hr before + none 1 hr after.

No alcohol, coffee or tea.

Stopped taking the multivitamins. (Biotin)

No black chocolate after 8pm.

Slowly cutting out milk products….. and hope soy isn’t a problem.!

But I can’t get rid of the stress in my life!

History T4 results.

(12–22 pmol/L) on 4-10-23 ——-8.2

13-02-23—— 8+

01- 11-24——9.1

26- 11–24 —-8.9

My doc wrote this T4 Report was satisfactory . No Further Action.

My TSH is not happy…..neither am I which is why I initially went to see the doc , who said a blood test, and 2 weeks later I was able to get one.

TSH is the highest it’s ever been…..but it’s just above by .02 the NHS guideline limits of (0.27——- 4.2mia/L ).

It’s at 4.22…..on 26-11-24.

last TSH was on 01-11-24 at 2.67!

“Noted :- Above High reference limit. ?Thyroid problem- Hypothyroidism.

Clinical details: monitoring “

I ask what might they be monitoring?

Doc has put me down as no further action on both these bloods.

What do I do next?

Many thank yous to anyone with ideas?

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Tea7light profile image
Tea7light
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17 Replies
tattybogle profile image
tattybogle

GP's ( or Endo's) monitoring treatment for hypothyroidism with Levothyroxine should aim to adjust dose to keep TSH in the lower part of the range ie. 0.4 /0.5 to 2.0 / 2.5 . This is supported by several references , some of which were written specifically for GP's : healthunlocked.com/thyroidu.... my-list-of-references-recommending-gps-keep-tsh-lower-in-range

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

ignoring an over range TSH is not acceptable for treated patients, even the most basic NHS guidelines for treating monitoring hypothyroidism say that they should be aiming to keep the TSH within range.

Tests for follow-up and monitoring of primary hypothyroidism

1.4.1

Aim to maintain TSH levels within the reference range when treating primary hypothyroidism with levothyroxine. If symptoms persist, consider adjusting the dose of levothyroxine further to achieve optimal wellbeing, but avoid using doses that cause TSH suppression or thyrotoxicosis.

1.4.2

Be aware that the TSH level can take up to 6 months to return to the reference range for people who had a very high TSH level before starting treatment with levothyroxine or a prolonged period of untreated hypothyroidism. Take this into account when adjusting the dose of levothyroxine.

Adults

1.4.3

For adults who are taking levothyroxine for primary hypothyroidism, consider measuring TSH every 3 months until the level has stabilised (2 similar measurements within the reference range 3 months apart), and then once a year.

1.4.4

Consider measuring FT4 as well as TSH for adults who continue to have symptoms of hypothyroidism after starting levothyroxine. nice.org.uk/guidance/ng145/...

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

so whoever is in charge of your dose should be increasing it based on this latest result ... i'm not sure if that is GP or endo in your case , as you were/ are ? on an NHS trial of T4/T3.

Tea7light profile image
Tea7light in reply totattybogle

Thank you Tattiebogle, for all this detailed information, lots to think on.

I was amazed how my TSH had shot up from a yearly almost a steady +/- 2.56 to 4.22! Within a year.

I’d always thought T4 was a slow worker eg a fortnight or so before movement! This near doubling in a month ,,,,any thoughts I’d appreciate.?

I think there may be some politics going on! I’m writing a letter to my doc about this TSH /T4 situ and he can pass it onto my Endo. If he cares to!!

As my Endo has been contacted on my problem. It has been used by my health centre to make a point with the blood labs that there are patients who are an acceptation, as they would be on both Ts 3+4 , so only giving a TSH Blood is NOT a helpful answer.

helvella profile image
helvellaAdministrator in reply toTea7light

Free T4 can change within minutes of swallowing a levothyroxine tablet!

It's value from a test depends on the balance of how much you take and how much your body needs/uses. And that test result is only a snapshot of that moment in time.

It varies through the day. It can vary because of a change of make of levothyroxine tablets. Or time of blood draw. And many other factors.

helvella - Scheduling Blood Draws

Factors to consider when choosing time for blood draws. Includes links to several documents/webpages and previous HealthUnlocked posts.

Last updated 12/08/2024

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

Tea7light profile image
Tea7light in reply tohelvella

Thank you for all this info Helvella, hot off the press. Sorry I’m slow at the moment responding.

Yes I now understand ‘the span ‘of the Bloodtest, and how important it is to be consistent when choosing a time to take it, if you need to do comparisons.

I’ve still more to read. As biotin is not the only thing to interfere with T4.

Even the way I diluted it, and used a syringe to take off the required mixed solution. Sediment residue in glass and even in the syringe mechanism! A past method.

Little things might affect T4 s up take?

Thank you for this work.

SlowDragon profile image
SlowDragonAdministrator

how much levothyroxine are you taking

How much T3

Do you always get same brands at each prescription

What vitamin supplements are you taking

Was last dose levothyroxine 24 hours before test

Did you split T3 day before test with last 1/3rd of daily dose approx 8-12 hours before test

On 1- 11- 24 bloods at 10 am

CRPHS. 2.99 mg/L. [ range 0 — 3.]

Ferritin. 86.3 ug/ L. [ “ 30 – 332.]

Folate. 26.1 nmol/L [ “ 07 - 35.]

Vit B 12. 150 pmol/L [ “ 37.5 - 187.5 ]

Vit D 83.3 nmol/ L. [ “ 50 — 250. ]

TSH. 2.67miU/L. [ “ 0.27 — 4.2 ]

FT3. 5 pmol/l [ “ 3.1 — 6 .8 ]

* FT4. 9.1 pmol/L [ “ 12 — 22. ]

Autoimmunity

TGA 77.7 KlU/L. [ “ 0 — 115. ]

TPA. 13 7 klU/L. [ “ 0 — 34. ]

Ever had over range antibodies in previous tests?

All thyroid patients or suspect thyroid issues need to avoid ALL soya

Suggest you try Oat milk

Tea7light profile image
Tea7light in reply toSlowDragon

Hello Slow Dragon,

Thank you for your thoughts & response.

I’m v low T4 @ 12.5mcg. Taken in the evening.

T3 @ 10mcg taken 1 st thing in the morning.

Both brands recently have always been the same.

Sorry typo on TPA, Lost a point!! Should be 13.7kl/U do they go under other names on NHS.?

Ok no Vegan soy use oat milk.

Would stress affect one’s Thyroid up take? I’m just stupidly tired and v. cold!

Do you think it’s worth pushing for a cholesterol test?

Both my parents died from heart attacks worth mention in my letter?

SlowDragon profile image
SlowDragonAdministrator in reply toTea7light

I’m v low T4 @ 12.5mcg. Taken in the evening.

T3 @ 10mcg taken 1 st thing in the morning.

Last dose levothyroxine should be 24 hours before test and day before test split 10mcg as 2 x 5mcg with last dose 8-12 hours before test.

Why such a very very low dose of Levo?

Have you ever been on just levothyroxine?

Typically dose levothyroxine is increased slowly up to approximately 1.6mcg per kilo per day

And essentially GOOD vitamin D, folate, ferritin and B12

Once Ft4 is up around 70% through range, if Ft3 remains low, then small dose T3 is added to Levo. Typically Levo doesn’t need reducing much, possibly by 25mcg reduction daily …….but often not as much as that

Hives is common with autoimmune thyroid disease

verywellhealth.com/thyroid-....

iodine not recommended when on thyroid replacement

Tea7light profile image
Tea7light in reply toSlowDragon

hello Slow Dragon I responded to you above then forgot to push the reply button ! I’m tired. Sorry.

I went and then answered Helvella, so I’ve lost all my answers to you.!!

I’m trying to get regular early bedtimes to counter act the bad sleep. So I will redo this tomorrow.

Tea7light profile image
Tea7light in reply toSlowDragon

Hello Slow Dragon,

I hope this message works. Life is never straight forward….

Prior to the 26-11-24 blood test. I missed the previous nights T4. That might be why at 10 past 8 am I was a bit vague in my thoughts? . Resulting in the high TSH @ 4.22…..This I researched was the earliest taking of my bloods this year.. On 30-10- 24 that had been at 8.20 am others were late morning. In future… Before 9 am as you say . But this T4 is still below the preferred initial level as it was 8.9pmol/L! Should be near 12!

The T 3 as I take it first thing in the morning I left off taking until after the blood sample was taken.

****

I was on NDT, in Eire, when that ended, I came to England so asked to go on T 4 . That started slowly, the transisition, but I realised I needed NDT, to help my verbal dexterity. I was on a combination as I tried to change over.

I got as far as 75mcg of T4, only, when less than a month in I had awful hives, I couldn’t sleep. Doc advised Antihistmines.

Not good, as my system was already choc a bloc with them. They dried me up TOO much. I’d been given all sorts over past 10 yrs for 9 mths of year, for hayfever!

We got out of that and I went to see the Endo. Who put me on 10 mcg T3 & 12.5 mcg T4, a trial. 3 months in things settled into being comfortable and I could hold fluent conversations without post it’s!! I needed the T3 to get to this stage.

The Endo diagnosed me as subclinical, but the T3 was needed because of the way my thyroid problems started. ( also have a younger sister who went through Thyroid cancer! She won’t talk about it.)

The initial effects of my Thyroid problems were like a spanner in my brain, I just lost words, I’d be talking, then void no more words. A bit later I could continue. …..!!!

But as time passed lots of lost words they increased & tiredness increased . This was for brief periods then I was like a cat just wanted to sleep on. I needed the medication but the Irish Endo had to ok me before I could have their T4, on prescription….2 yrs passed before that happened!

Meanwhile I found Dr Barry Durrant- Peatfields book in the Library and put myself onto NDT. Sanity!

*********

Could a fall landing on my head compress my hypothalamus ? I had such a fall in1993, and this thyroid problem emerged in 2007!!

Many thanks for your time reading all this.

T7L.

SlowDragon profile image
SlowDragonAdministrator in reply toTea7light

Yes head trauma can cause thyroid/pituitary/adrenal issues

braininjurygroup.co.uk/news....

pituitary.org.uk/informatio...

Prior to the 26-11-24 blood test. I missed the previous nights T4. That might be why at 10 past 8 am I was a bit vague in my thoughts? . Resulting in the high TSH @ 4.22…

TSH does not react suddenly to missing a dose

It’s more like an average speed check on the motorway

TSH over 2 means you are not on high enough dose

Only increase Levo or T3 …..not both

Wether you increase Levo first or T3 ……up to you

Increase T3 by 5mcg

Or

Increase Levo by 25mcg

Retest in 6-8 weeks

Tea7light profile image
Tea7light in reply toSlowDragon

Thank you Slow Dragon v. much for the sign posts and logic.

After trying to raise T4 meds & the T 4 fogging . I felt never again did I want to fall into that tired T4 trap.

So it’s T3. + retest in 6-8 weeks, and I eat into my new 4 mths of T3 due at the end of this week! It’s only 5mcg, just what I felt ,a sprinkle .

Does T3 keep diluted for several days?

But I suspect if I do buy meds for myself eg, T3, the NHS will pull out their financial support and say I can finance all the T3 myself.! As this health centre runs on a shoestring!

So I’m dammed if I do & dammed if I don’t !!

But I’m wiser.

Many thanks again for all your help.

helvella profile image
helvellaAdministrator in reply toTea7light

Joanna Lane used to run a website:

Mother of a Suicide: The Battle for the Truth Behind a Mental Health Cover-Up

by

Joanna Lane

Well, there had been some progress. I’d learnt a lot about hypopituitarism, for a start. I’d built up a collection of papers that filled a whole filing cabinet drawer, throwing out all my teaching papers to make room for them. I’d persuaded a couple of important medical websites to include the crucial information. I’d made slight inroads into the medical press — a couple of letters in magazines for GPs. I’d had encouraging replies from some of the hospitals I’d written to. I’d learnt that Dr Tara Kearney at Salford Royal Hospital in Manchester was ‘addressing the issue’ of PTHP. Thanks to one of my brothers-in-law and a nephew I had a_ website, Headinjuryhypo, that set out the salient facts, but all this was like throwing bread on the water. I did not know where the ducks were, or if they were eating any of it. I was reaching out into the void, desperate to find somebody like Chris (I always visualised a young man, though I knew it wasn’t only men who suffered) who would learn about PTHP and get his life back.

archive.org/details/mothero...

Book available

A couple of links:

amazon.co.uk/Mother-Suicide...

alibris.co.uk/booksearch?S=...

PHTP = Post-traumatic hypopituitarism

Tea7light profile image
Tea7light in reply tohelvella

Thank you for these avenues of thought Helvella.

I’m saturated now will read & respond later.

T7L

helvella profile image
helvellaAdministrator in reply toTea7light

Don't feel you have to reply.

It is nice to get a Like just so I know you have seen a reply. And, of course, you can reply if you wish, but most of the time I'd only expect a reply if you want to. :-)

Tea7light profile image
Tea7light in reply tohelvella

Ok that sounds good. The first link doesn’t work on my machine! As you may gather I’m not a regular computer user. So it’s all new to me.

Many thanks to you and your team especially Slow Dragon. 🙂

helvella profile image
helvellaAdministrator in reply toTea7light

:-)

The first link is to the Internet Archive - hadn't realised but I think you might have to register (free) and sign in.

Screenshot
Tea7light profile image
Tea7light in reply toSlowDragon

what multi vitamins am I taking. You won’t …. approve it’s a multi vitamin, ….Biotin 50ug per tablet, so I stopped it 4 days before bloods.

It also has per tablet:- Vit D 10ug. Iron 7mg iodine 150ug , selenium 110ug , zinc 10 mg + zinc picolinate 22mg , separately etc etc. could these be a problem,?

Should I source many of these separately ?

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