Weird case, hypo ?? Not hypo : Having a high... - Thyroid UK

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Weird case, hypo ?? Not hypo

Miraclesky profile image
24 Replies

Having a high TSH would normally indicate hypo, but my free t4 & t3 are also high normal in the upper ranges, Not low, Not low normal .

My Endo doesn't think that I need thyroid meds as my thyroid is already producing enough hormone. I am hypo based on TSH but Not hypo based on free t4&t3 ...

Latest blood test results :

TSH : 13 ( 0.5 - 4)

Free t4 : 17 ( 10 -20)

Free t3 : 5.1 ( 3.5 - 6)

Please advise

Thanks

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Miraclesky profile image
Miraclesky
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tattybogle profile image
tattybogle

Your TSH is high (probably because a little while ago your regulating system noticed your T4/3 were getting too low .... so it turned up the signal that asks the thyroid for more T4/3 , (TSH is the signal )

It's currently asking your thyroid (very loudly ) to try as hard as it can to make more T4 and T3, ..... and for the moment , your thyroid is managing to achieve this .. this is probably why you've currently got high TSH and pretty decent looking T4/ 3 levels.

There is also a 'boost' function going on ... when TSH is high, the thyroid makes a higher ratio of T3 to T4 than it usually does... and your cells also convert you inactive T4 into active T3 a bit faster than normal.

If the reason your TSH is high is because your thyroid is starting to struggle due to autoimmune damage, then eventually it won't be able to keep up with this 'emergency' effort any more .. and your fT4 will eventually start to go lower.. and TSH will go up higher ... until eventually you have very high TSH and very low fT4 .

The fact that your TSH is already over 10 is significant ..... my understanding of the NHS thyroid disease guidelines is that you should be treated straight away once TSH is over 10.. even if Ft4 /fT3 are in range... i'll find a link and check that out in a minute.

How do you feel ? OK or suffering with symptoms of hypothyroidism ?

How long has your TSH been high ?

Is this the first over range TSh test you've had ?

tattybogle profile image
tattybogle in reply to tattybogle

This is the relevant NHS guidelines. :nice.org.uk/guidance/ng145

If TSH is over range with fT4 still in range~ they call it 'sub-clinical hypothyroidism ,,, and they 'may consider' treating it at this point IF symptoms are a problem .

They will be more likely to decide to treat if TPOab are over range (thyroid antibodies showing autoimmune disease)

*Note .. this does not say they can't treat if fT4 is OK, and it differentiates between 'TSH over 10' and 'TSH over range but under 10' .

TSH over 10 is clearly considered 'more in need of treatment'.

"1.5 Managing and monitoring subclinical hypothyroidism

Tests for people with confirmed subclinical hypothyroidism

Adults

1.5.1Consider measuring TPOAbs for adults with TSH levels above the reference range, but do not repeat TPOAbs testing.

Treating subclinical hypothyroidism

1.5.2When discussing whether or not to start treatment for subclinical hypothyroidism, take into account features that might suggest underlying thyroid disease, such as symptoms of hypothyroidism, previous radioactive iodine treatment or thyroid surgery, or raised levels of thyroid autoantibodies.

Adults

1.5.3Consider levothyroxine for adults with subclinical hypothyroidism who have a TSH of 10 mlU/litre or higher on 2 separate occasions 3 months apart. Follow the recommendations in section 1.4 on follow-up and monitoring of hypothyroidism.

1.5.4Consider a 6-month trial of levothyroxine for adults under 65 with subclinical hypothyroidism who have:

a TSH above the reference range but lower than 10 mlU/litre on 2 separate occasions 3 months apart, and

symptoms of hypothyroidism.

If symptoms do not improve after starting levothyroxine, re-measure TSH and if the level remains raised, adjust the dose. If symptoms persist when serum TSH is within the reference range, consider stopping levothyroxine and follow the recommendations on monitoring untreated subclinical hypothyroidism and monitoring after stopping treatment."

Miraclesky profile image
Miraclesky in reply to tattybogle

Thank you tattybogle so much for your prompt reply .

My TSH was always elevated since my hemi - thyroidectomy 18 months ago. It has been fluctuated up and down, up and down ranging from 6, 9, 8, 6 to 13. 13 is the latest, for all those time, my t4 &3 are all normal, because I was subclinical hypo with my TSH less than 10 in the past, my Endo didn't start me on treatment and I was feeling fine most of the time.

The only bad thing is my LDL cholesterol is getting higher & higher at 3.7( <3.4), my HDL & triglyceride are all good, HDL 1.8 ( 1 -2), triglyceride 0.7 (0.5-1.7) , my Endo thinks that it is more risky to have a high LDL than high TSH, so he wants me to take statin instead.

tattybogle profile image
tattybogle in reply to Miraclesky

oh for crying out loud .... bang your endos' head on the table, and then ask him to read the article for GP's that is discussed in this post .

healthunlocked.com/thyroidu.... (gps-told-keep-tsh-0.5-2pmol-l-hypothyroidism-causes-raised-cholesterol-thyroid-disease-effects-on-heart-and-cardiovascular-system.)

( it's written for GP's by 2 Specialist Registrars in Cardiology and Endocrinology ) halfway down the article there is a table listing hypo ,and hyper thyroid effects on the cardiovascular system.

It clearly states that raised cholesterol is a sign of hypothyroidism ,, and that it will resolve once the hypothyroidism is treated .

There is no need to go giving you a horrible thing like a statin , which (i think?) comes with umpteen risks of side effects and is particularly NOT recommended for hypothyroid people ( i can't remember exactly why not .. something to do with muscle damage being more likely i think )

As for the 'it's more risky to have high LDL than high TSH ' comment ......

.....ask him to read you the potential side effects of Levothyroxine ,and then read you the potential side effects of the statin .......

Also ask him to read this academic.oup.com/jcem/artic...

and look specifically at Figure 2.

.... See what happens to the risks of Cardiovascular Disease and Osteoporotic Fracture after TSH goes over 10 .... point out to Endo that they are higher for TSH over 10 than they are for hyperthyroidism .

Miraclesky profile image
Miraclesky in reply to tattybogle

Thanks tattybogle for the links

SlowDragon profile image
SlowDragonAdministrator in reply to Miraclesky

Suggest you consider seeing different endocrinologist

nhs.uk/conditions/statins/c...If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.

When were vitamin D, folate, ferritin and B12 last tested

What vitamin supplements are you currently taking

Miraclesky profile image
Miraclesky in reply to SlowDragon

Thanks SlowDragon,the only supplement I 'm taking is glucosamine, my Vit D level is good now since my tsh elevated to 13.., strange..i took no vitamin D supp.

SlowDragon profile image
SlowDragonAdministrator in reply to Miraclesky

TSH over 10 = prescription for levothyroxine regardless of Ft4

See flow chart on top of page 2

gp-update.co.uk/Latest-Upda...

What are your most recent folate, ferritin, B12 results

SlowDragon profile image
SlowDragonAdministrator in reply to Miraclesky

Are you getting calcium, vitamin D and pth tested annually

How high is vitamin D

Miraclesky profile image
Miraclesky in reply to SlowDragon

Vitamin D was insufficient, now back to sufficient when TSH elevated to 13, strange... All other minerals are normal I think.

SlowDragon profile image
SlowDragonAdministrator in reply to Miraclesky

Vitamin D was low before BECAUSE you had hyper parathyroid tumour

parathyroid.com/low-vitamin...

reason for a low vitamin D is that you have primary hyperparathyroidism due to a small tumor in your neck and the body converts all the vitamin D-25 (that your doctor is measuring) to the active Vitamin D-1-25 (that doctors do not measure)

What’s your actual vitamin D result now

Good vitamin D is at least around 75nmol

PurpleNails profile image
PurpleNailsAdministrator

The problem is you might currently have sufficient thyroid levels because your thyroid is working harder than in should to maintain levels.

That won’t continue and at some point no matter how high the TSH increases your levels will begin to drop. Is the doctor planning to regularly monitor this?

How do you feel do you have any symptoms?

What time of day was test taken? Had you eaten before test? That can change the result.

A TSH over 10 is overt hypothyroidism & if consistently as high should be treated. Doctors usually go by TSH alone, and It is more unusual for above range TSH and ok be FT4 & FT3. but having in range levels & using it as an excuse not to treat is wrong & shows no consideration of long term.

Often the TSH appears in range so FT4 & FT3 aren’t tested by lab, soon it’s determined they are very low.

Was anything else tested. Such as TPO or TG antibodies as having positive autoimmune will provide evidence that yourThyroid level will gradually decline as the immune system could be attacking thyroid.

Miraclesky profile image
Miraclesky in reply to PurpleNails

Thank you so much Purplenails for your prompt reply.

The test was in the morning fasting, so I suppose TSH is higher when fasting, I don't have TPO or TG antibodies.

I am ok so far, only occasionally have a bit of heart palpitations.

PurpleNails profile image
PurpleNailsAdministrator in reply to Miraclesky

TSH is highest early morning it also lowers after eating.

I hadn’t read your history & previous posts.

Why did you have a subtotal thyroidectomy? Were your levels previously at hyper levels? Antibodies associated with hyper are TSI & TRab they can interfere with testing occasionally.

Have your thyroid levels been increasing since surgery? How do they compare?

Miraclesky profile image
Miraclesky in reply to PurpleNails

Thanks PurpleNails

I didn't have any thyroid issues before the surgery, I was in there for a parathyroidectomy because of high calcium, the parathyroid edenoma was embedded in my thyroid nodule (begnin), the surgeon took half of my thyroid out, now I have thyroid issues.

PurpleNails profile image
PurpleNailsAdministrator in reply to Miraclesky

Did you have thyroid testing prior to surgery? if so, you would know what your normal is & a better comparison can be made.

Assuming that your calcium, vitamin D and PTH are all carefully monitored since surgery?

Miraclesky profile image
Miraclesky in reply to PurpleNails

Yep, my calcium is fixed, but now facing the thyroid issues that I didn't have before.

PurpleNails profile image
PurpleNailsAdministrator in reply to Miraclesky

When you were well what were your levels. What was vitamin D level. In range is acceptable to doctors - you need optimal.

Miraclesky profile image
Miraclesky in reply to PurpleNails

Vitamin D was normal when I was younger, then was insufficient since I had high calcium & PTH, more insufficient after surgery, then back to sufficient last blood test when my tsh elevated to 13, very strange, I took no vitamin D supp.

Thyroid was always normal with TSH anywhere from 1 to 4 before surgery, mostly 3.

hatedoctors profile image
hatedoctors

Please get the book, "Stop the Thyroid Madness" by Janie Bowthorpe. It will help explain testing and results. This book saved my life. I've been under-treated by under-educated endocrinologists and regular docs for decades. I don't want anyone to walk my path of poor medical advice. This book is more informative than several docs put together. And the author is not in the pockets of pharmaceutical companies!

tattybogle profile image
tattybogle in reply to hatedoctors

Just be aware that while a lot of the book is very useful, there are some explanations on the 'stop the thyroid madness' website that have not been updated in line with recent evidence..... ie. the bits about 'Reverse T3 blocking the T3 receptors'. It has since been shown that this is not possible and Reverse T3 uses different receptors .

(The explanation of Reverse T3's role is more complex., and has to do with the deiodinases.

Thyroidpatients.Canada website have articles explaining the up-dated understanding )

If the website is still out of date , i assume some of the explanations relating to this in the books are out of date too .

hatedoctors profile image
hatedoctors

Yes, thank you for your reply. The STTM website took down their blood test ratio calculator and I'm sure there are other updates and revisions that need to be made. The book has been the only real help I've had here in the states. And as our medical society here is relying more on Osteopaths (require less training) to fill in as general practitioners then we might see the number of doctors who passed microbiology with a decent grade become fewer and fewer. At our university in Oregon, pre-Veterinary students are required to take a higher level of microbiology than pre-Med students! My regular doc who is trying his best to help me just lowered my Armour Thyroid by 15 mg. and upped my Levo by 25 mg. because he was afraid of my low TSH causing A-fib and then stroke. Apparently gaining 8 lbs. in 3 weeks doesn't seem to cause concern for anyone except me. The little amount of Armour makes all the difference in the world to me. I will check out the Thyroidpatients.Canada. Thank you so much for your concern and advice. I appreciate it.

tattybogle profile image
tattybogle in reply to hatedoctors

Vets are better trained over here too, I was once looking up the treatment of hypothyroid horses.. and discovered vets know to take the time of the last dose Levo into account when interpreting fT4 tests ...unlike GP's who don't realise it matters.

(In case you're wondering .. horses have their Levothyroxine sprinkled onto their oats )

hatedoctors profile image
hatedoctors

These posts are very helpful and I appreciate being able to tap into the knowledge other people have acquired. Synthroid and the medical doctors here are both synthetic - basically useless. I can't substantiate low TSH levels being associated with A-fib/stroke but that was the reason my Armour Thyroid levels were lowered to 105 and Levo upped to 50. I have Hashi's and this doc doesn't test for antibodies and wouldn't know what to do with those results anyway to lower inflammation. My Vet has a PhD and is smart. I wish she could prescribe for me. My animals get superior care. Why can't we?

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