Hyper symptom cause: I've done a lot of reading... - Thyroid UK

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Hyper symptom cause

Sat2 profile image
Sat2
13 Replies

I've done a lot of reading and learning on here over the last few months and so now got to the point of starting to asking questions to this very knowledge community.

I have many signs & symptoms (and bloods) that indicate I'm hypo but one or two that seem to feel like how I was when I was very hyper (SAT T3>23, T4>69) namely somewhat jittery/shaky or can this be a symptom of both hypo and hyper.

My Q is what causes hyper symptoms, elevated T3 or T4 or both?

I appear to have a good listening GP and I am having a comprehensive NHS blood test tomorrow everything under then sun but not T3 so I'm also doing a private TFT tomorrow as well, to help complete the picture.

I will no doubt be back with my results hopefully Thursday for comments before my next GP appointment.

Thanks for all the Wonderfull help on this forum.

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Sat2
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PurpleNails profile image
PurpleNailsAdministrator

Lots of info on bio.

You have autoimmune thyroiditis confirmed by uptake scan & current dose is 75? After adjustments up & down? So it looks like your levels are still fluctuating a great deal which can occur in earlier stages of autoimmune thyroid (Hashimoto’s)

Have you had thyroid antibodies tested? Doctors may not have tested as you had an uptake scan.

Hyperthyroid is continuous over range FT4 & / or FT3. When the thyroid is over producing. Your thyroid is under functioning so it can’t over produce but you can be “over replaced”

Most say FT3 is the main ruler of symptoms. Low FT3 = hypo & high FT3 = hyper. Some seem almost unaffected by FT4 - others need both to be good in range.

Symptoms are an individual thing. Everyone’s optimal is different so some may have terrible symptoms even though lab results look borderline or normal. Where as other can have “abnormal results” and feel unaffected. Symptoms are very diverse & varied, lots have typical hyper symptoms when hypo & vice verser.

Most feel well with TSH around 1. FT4 in upper 3rd of range & FT3 above 50%.

Your FT4 is high in range but FT3 is poor, your body isn’t converting T4 to T3. Are your nutrients optimal? Levo often wont work well unless folate, ferritin, B12 & Vitamin D are optimal. Have these been tested?

It’s unlikely the lab ranges between labs (GP / Hospital / private companies) are all the same. Ranges vary between machines. We look at the % through range to compare results.

Sat2 profile image
Sat2 in reply toPurpleNails

Thanks for the feedback.

I had Subacute Thyroiditis (not autoimmune) confirmed by uptake scan, now sadly permanently hypothyroid. My latest TPO antibody test was 9IU/mL, upper limit >34, yes I am currently on 75mcg Levothyroxine.

I don’t believe my vitamins are optimal/high but don’t appear deficient either but I’m having NHS bloods tomorrow and so rather than use old vitamin values I’ll wait until I receive the new figures to get relevant advice.

Luckily all my blood testers do have the same ranges, makes life a little easier.

Do I take it that if my poor conversion can’t be rectified by vitamin improvements then I might be a candidate for T3 prescription, which is nigh on impossible to obtain on the NHS.

Once again thanks for your help and advice

PurpleNails profile image
PurpleNailsAdministrator in reply toSat2

“ () if my poor conversion can’t be rectified by vitamin improvements then I might be a candidate for T3 prescription, which is nigh on impossible to obtain on the NHS.”

correct

SlowDragon profile image
SlowDragonAdministrator

you should have TPO and TG antibodies tested for Hashimoto’s- autoimmune thyroid disease

Early stage Hashimoto’s as thyroid cells breakdown they release excess thyroid hormones, causing temporary hyperthyroid results

After each attack, thyroid becomes more damaged and increasingly hypothyroid

Low vitamin levels very common with Hashimoto’s

Test vitamin D, folate, ferritin and B12

If not had coeliac blood test you need this testing too

nice.org.uk/guidance/ng20/c...

which brand of Levo are you taking

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

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

SlowDragon profile image
SlowDragonAdministrator

extremely helpful bio

18/12/23

TSH 2.78

Ft4 20.4

Ft3 4.20

Was test done with last dose Levo 24 hours before test

If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

Assuming it was

This shows poor conversion

Next steps

Test vitamin levels and antibodies and coeliac blood test

Which brand Levo and is it always same at each prescription

Sat2 profile image
Sat2 in reply toSlowDragon

Thanks for the feedback. I’ve been told I suffered viral subacute thyroiditis not autoimmune. My last TPO was 9. I had a pertechnetate uptake test which showed no uptake.

TBH I can’t remember if that test had a 24 hour break from levo, but tomorrow’s test and all future tests will have.

I now take Accord 50 and wockhardt 25, I was on Teva but felt that it upset at least my stomach, I’m sensitive to sorbitol, manittol in Teva is very similar to sorbitol chemistry. Pharmacy did tell me that patients have no right to request what brand of med they receive, I explained that we could either do it informally or I’ll get my GP to prescribe a specific brand, they did then agree to not provide Teva or Hilcross, we’ll see next month if they can remember what they’ve said. The only constant levo seems to be the Accord 50mcg, hopefully I’ll stay on wockhardt 25 going forward.

SlowDragon profile image
SlowDragonAdministrator in reply toSat2

Pharmacy is incorrect re brand of levothyroxine

Government guidelines for GP in support of patients if you find it difficult/impossible to change brands

gov.uk/drug-safety-update/l...

If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.

academic.oup.com/jcem/artic...

Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).

And here

pharmacymagazine.co.uk/clin...

Discussed here too

healthunlocked.com/thyroidu...

Many members have note added to prescription saying “no Teva”

Accord don’t make 25mcg, but you could cut 50mcg in half to get 25mcg

but

You’re quite likely ready for next increase in Levo after this test

pertechnetate uptake test which showed no uptake.

I don’t think this rules out Hashimoto’s

radiopaedia.org/articles/th...

You need BOTH TPO and TG antibodies tested for autoimmune hypothyroid (hashimoto’s)

NHS only tests TG antibodies if TPO are high

Significant minority of Hashimoto’s patients only have high TG antibodies and struggle to get diagnosed

20% of Hashimoto's patients never have raised antibodies

healthunlocked.com/thyroidu...

Paul Robson on atrophied thyroid - especially if no TPO antibodies

paulrobinsonthyroid.com/cou...

Gluten intolerance is often a hidden issue too.

Request coeliac blood test BEFORE considering trial on strictly gluten free diet

Sat2 profile image
Sat2 in reply toSlowDragon

Thank you for the above information, it will keep me entertained for a day or two.

pertechnetate uptake test which showed no uptake.

I don’t think this rules out Hashimoto’s

this is interesting, I was told it was Subacute Thyroiditis and so I haven't researched Hashimoto's, but I will now. I did have classic SAT symptoms though, sudden onset pain from jaw to ear which swapped side, difficulty swallowing, hoarse voice and tender/painfull thyroid. I will get my GP to confirm what she believes my condition to be.

SlowDragon profile image
SlowDragonAdministrator in reply toSat2

How long since antibodies were tested

Perhaps retest privately if GP can’t

sciencedirect.com/science/a....

ncbi.nlm.nih.gov/pmc/articl...

Sat2 profile image
Sat2 in reply toSlowDragon

Interesting reading.

My antibody tests are admittedly a bit spread about the place, my latest TPO of 9 is a bit lower than the previous test.

None of my Antibody tests or protein tests have ever been out of range.

04/10/2021 TRAb <1.10 IU/L

04/11/2022 Transglutaminase IgA Ab. 0.7 IU/mL (0 - 6.9 IU/mL)

18/12/2023 TPO 9 IU/mL (<35 normal)

SlowDragon profile image
SlowDragonAdministrator in reply toSat2

No thyroglobulin antibodies tested

NHS won’t test unless TPO over range

Would need to test privately via Medichecks or Blue horizon

pubmed.ncbi.nlm.nih.gov/303....

PurpleNails profile image
PurpleNailsAdministrator in reply toSat2

TRAb <1.10 IU/L

Is this result? Or range (looks like range). Is so, what was result? or what was range…..

Would have likely been when hyper as this test is considered marker for Graves.

Sat2 profile image
Sat2 in reply toPurpleNails

this is the result from when I was initially ill and Hyper.

The following is the range explanation.

Healthy individuals upper limit of normal: 1.22 IU/L Thyroid disease upper limit of normal: 1.58 IU/L

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