Going round in Circles!: My last TSH was 23.... - Thyroid UK

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Going round in Circles!

healthymarge
healthymarge

My last TSH was 23.5. Cholesterol 7.8. Finally got referred to an endocrinologist who wasn't a bit concerned at the results but said it could be supplements I was taking interfering with readings. He asked if I was talking statins for cholesterol but I said I was waiting for my thyroid to settle as that was probably causing the high cholesterol. He said he wasn't concerned with my thyroid so I left no wiser!

28 Replies
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Hi

3 months ago your post said you were on Levothyroxine.

What’s has happened?, was this stopped.

With a TSH 23.5 I don’t see how the Endocrinologist can say they aren’t worried.

Cholesterol problems can go hand in hand with thyroid problems not being addressed correctly.

Best Wishes

Peanut31

Still on 100 Eltroxin. Energy levels good but hair falling out and nails weak. Also palpitations and a skipped heartbeat which the endo said many people including himself have!

Hidden
Hidden
in reply to healthymarge

Did the endo also disclose brain damage as he is seriously one picnic short of a basket if he thinks at TSH of 23 is nothing to be concerned about.

healthymarge
healthymarge
in reply to Hidden

I'm going to enjoy my Christmas and reassess things in the New Year. Just so fed up with doctors lack of thyroid knowledge.

I definitely think my high cholesterol is linked to thyroid. Will have full bloods done in New Year and see how things are. Many thanks for reply xx

An endocrinologist who isn't concerned about a TSH of 23.5 shouldn't be in the job, and doesn't deserve to call himself a doctor. I would put in a complaint against him, since he was as much use as a chocolate teapot.

I really don't know what to do at this stage as I thought the endo would see that TSH is way out but he said as all previous results were okay not to worry. the one before that was TSH 12.5 Waiting on my latest blood results to come through.

Saya85
Saya85
in reply to healthymarge

I'm.sorry if this is a stupid q- but do you really mean TSH is 12/23??? Or free T4 levels are ?

Scratch that- I just looked at your previous post.

How ridiculous. Your TSH is way out of range even with 'skewed results'

Think you need to force GP to up your Levo and hope that it relaxes the Hashi flare also

Just met a colleague who was off work for weeks because her TSH was over 100.... Then came down to 36 with meds.....but then changed to 0.02 and dose reduced.

Are all your vitamins optimal ? Maybe poor t4 to T3 conversion is causing the fluctuations but even those are not normal (!)

Trying gluten free and dairy diet may help to control the autoimmune side of things

healthymarge
healthymarge
in reply to Saya85

TSH 23.5

Saya85
Saya85
in reply to healthymarge

Sorry yes I just edited my message

healthymarge
healthymarge
in reply to Saya85

My GP said I don't have Hashis. I get my meds in Spain so I can adjust according as I feel!

greygoose
greygoose
in reply to Saya85

The OP is not having a Hashi's 'flare'. If she were, her TSH would be suppressed. :)

Saya85
Saya85
in reply to greygoose

Thanks - yes I was thinking that after as it would flood it with thyroid hormone ... But what does cause such a massive spike in TSH?? Pituitary issues ?

greygoose
greygoose
in reply to Saya85

I don't think so, no, pituitary issues would mean that the TSH hardly rose at all.

It could be caused by lab error - that's always a possibility - taking biotin - the OP hasn't said if she is or not - or TSH antibodies (not the same as Hashi's or Grave's antibodies). Or, it could be that her thyroid has suddenly massively failed. But, without seeing the FT4 and FT3, we cannot know.

Saya85
Saya85
in reply to greygoose

I didn't think biotin could cause that much error.

My friends TSH jumped to 100+ and then 36+ whilst on 75mcg and then dropped really low on 125mcg

She wasn't taking any supplements

So odd..... I feel like death of it goes above 4(!)

Thyroid resistance ? Or something affectibg t4 to T3 conversion - liver damage ? Infection ?

Hope the OP gets better soon (!)

greygoose
greygoose
in reply to Saya85

The TSH is a deeply flawed test as an indication of thyroid status. It was never intended to be used on its own, but in conjunction with FT4/3. For one thing, it is a lot slower to react than the Free levels.

I don't know by how much biotin can affect a TSH result.

Thyroid resistance wouldn't cause it to rise like that, because the hormone would still be in the blood, and the pituitary reacts to what is in the blood, not what is in the cells.

Conversion could suddenly have nose-dived, yes. But, to that extent? And, we can't know without seeing the test results.

I'm not sure the liver has anything to do with the TSH directly, but could cause conversion failure, I suppose, but as I said, the TSH is very slow to react, so to have reached that point, it would have had to started a while ago. And, I think the OP would have felt very ill before it got to that point.

And, again, I'm not sure an infection would cause it to rise that high.

If I had to put my money where my mouth is - and I'm not a gambler - but I would bet on TSH antibodies. They can cause the TSH results to rise drastically. Although not the actual TSH itself. I once saw the results of a dog whose TSH shot up to over 100 because of that. And it can happen with humans, too.

I had an ultrasound before I went to the endo and the radiologist said she could hardly see the thyroid it was so atrophied! The endo dismissed this when I asked about

It!

So, it sounds like you've had Hashi's. But, endos know nothing about Hashi's - they barely know where the thyroid is! But, I wasn't talking about that sort of antibody. I was talking about TSH antibodies which affect the blood analysis and give false high readings for the TSH.

But, as has been said before, we can't know anything without seeing the FT4 and FT3 readings. :)

Hi

My advice would be self medicate, you have given your endo enough chances to help, and, to say he has failed miserably is an understatement.

Don't bother listening to a word that comes out of his/her mouth. You would be better getting advice from the cleaning lady, honestly.

I'm not sure if you are from the UK, but, if you are, I strongly advise you to test your bloods privately. Make sure you test TSH, T3 & T4. Medi checks and blue horizon offer private blood testing and the thyroid check is a finger prick test as well. If you can afford it I would suggest you check all your vitamin levels as well as they play a very important role to the thyroid.

I can't remember if you mentioned you have been tested for an auto immune disease (Hashimoto's), if not get this tested as well.

Best Wishes

Peanut31

My GP said I don't have hashi's but said to increase my Eltroxin because the TSH was 23.5. I was taking 100 five days a week and 75 the other two so now 100 every day. I am going to get a full set of bloods done privately in the New Year and will take it from there. Thanks so much for all your posts.

Once upon a time, doctors knew that high cholesterol was a key symptom of hypothyroidism. Doctors seem to know less and less these days...

This “Endo” sounds positively dangerous. Is your GP any good?

healthymarge
healthymarge
in reply to Jazzw

GP only interested in prescribing meds for everything. Won't be going back!

Jazzw
Jazzw
in reply to healthymarge

:(

There’s always the self medication route. Definitely not the way you should have to go, but...

His reference to supplements distorting results is presumably a reference to biotin, whether supplemented alone or in multi-vitamins. Do you take biotin in any guise? Do you have previous results that indicate your TSH was lower then, and that this 23.5 is a glitch? Have you any actual thyroid levels rather than just the pituitary's TSH? It might be presumed that if your TSH is that high, then your thyroid hormones will be correspondingly low; but the only way to even begin to understand what is going on, is to have a comprehensive set of test results - and you may need to obtain that privately. If your TSH is genuinely 23.5 and he's not concerned, I would definitely make a formal complaint.

I'm going to wait until the New Year and pay privately for full bloods without having to beg for T3 etc.

Also thinking of doing a liver cleanse which might lower cholesterol although I eat and exercise well but it could be genetic.

No GP the same. When I said I was piling on the weight he said pop up on the scales! Wanted me on statins but when I said low thyroid is related to high cholesterol he said well lets wait for next blood results! I give up!!

Im so upset reading your story. Its incredible that these docs are earning 100k a year and treat us like this. My cholesterol is above average but at my last endo visit, only my TSH was tested. Obviously they are trying to save money by not testing t3 and t4 levels. My TSH is below 1 but Im worried about my cholesterol and also pounding heart. Feel there nothing I can do but pay for private bloods. Soooooo fed up with whats happening to the NHS and the complacency of endos. Hope you get yourself on the correct dose next year x

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