Strange TSH results after being on levo for over 20 years.

[v6mikey1]

Hi.

I have been on Levo for over 20 years now. My doctor has just put the dose up to 200mcg from 175mcg. This is because my TSH levels have shot up. I'm not sure what the results were now, but they were very high. I'll ask next time I see her.

She believes that this will not be enough and has referred me to an endocrinologist.

The main symptom I have now and again is memory loss and brain fog.

Any advice as to what I should ask the endocrinologist or my gp would be great.

Is there any reason/explanation that my TSH levels have increased so much?

[jimh111]

Sounds like poor absorption. Have you changed to a different brand of tablets recently or changed the time you take your tablets? Coffee can have a big effect on absorption so avoid having coffee around the time you take your tablets.

[v6mikey1]

Thanks for your reply.

No the brand is the same, still taken early morning and I do like coffee, but I don't drink it in the morning.

[greygoose]

Do you have Hashi's? When you say 'shot up', can you give us the exact numbers, please? Otherwise, it's all a bit vague.

[v6mikey1]

Thanks for your reply.

No, I have only ever been diagnosed as hypo. Exact numbers I will have to supply later as I didn't get exact numbers from the doc. She just said they were very high.

[diogenes Remembering]

How high was the TSH? Patients can over years develop antibodies in their blood that can wreck TSH tests by interference. If the TSH is above 30-40 on that amount of T4 then I'd suspect the TSH test and ask for another one to be done by a different method. Then if the result is the same, I'd suspect some sort of resistance to T4 has developed.

[v6mikey1]

Ok, just called the docs to get my TSH levels.

Latest blood test

TSH was 19.28.

T4 14.5.

[diogenes Remembering in reply to v6mikey1]

First get another TSH done by a different method. That will clarify things.

[v6mikey1]

What are the different methods?

[diogenes Remembering in reply to v6mikey1]

They all are similar in what you do, but the antibodies used to do the test can differ so that interference can happen in one and not another. It's unlikely that two tests from different manufacturers will respond the same. This phenomenon is well known and there should be procedures to get round it.

[shaws in reply to diogenes]

Very interesting information. Thank you.

[amala57]

Really need more info. Have you become resistant to converting T4 to T3? Need these results to be able to comment. Possibly you have become deficient in vitamins and/or minerals? Have you had your thyroid gland removed?

[v6mikey1 in reply to amala57]

Thanks for your reply.

Don't know whether I am resistant or not at converting T4 to T3.

Thyroid gland has not been removed.

[humanbean]

Have you started taking some new supplements in the months before your high TSH result? Or maybe they are similar to what you've taken before but a different brand?

If you have been taking any supplement which contains biotin (often included in multivitamins or in B Complex tablets) it can interfere with the way that thyroid function testing works.

For more info on the whole subject :

healthunlocked.com/thyroidu......

[v6mikey1 in reply to humanbean]

Hi Humanbean.

I have not started or take any supplements.

Thanks.

[v6mikey1]

After reading around this forum, it had dawned on me that treating hypothyroidism is not just as easy as taking a pill and getting blood test every year. (That's what I've been doing for the last 20 years.)

[RedApple in reply to v6mikey1]

v6mikey1, It actually is that simple for some people, but those people tend not to be posting on thyroid support forums.

We do though, get quite a few people who have had the easy route for many years, and then suddenly, for no obvious reason, things go completely haywire and it all becomes far more complicated than they'd ever imagined it could be.

[KatherineM_PBC in reply to RedApple]

My mum was diagnosed hypothyroid 50 years ago, has taken pretty much the same dose of Levo ever since (100 / 125) very sporadic blood testing from her GP, never any issue associated with thyroid (fatigue etc). She is now 85 and apart from a bit of arthritis, pretty good for her age!

[puncturedbicycle in reply to RedApple]

I do wonder how many of those people were never symptomatic in the first place. Some are lucky.

My friend who bless him has a genetic predisposition to ThyCa (so not very lucky in that regard) recently (a few months ago) had a TT and is on something like 125mcg levo and is feeling fine, almost w no transition at all.

[RedApple in reply to puncturedbicycle]

An aunt of mine had TT due to thyca. Has been on levo ever since (60 odd years), boundless energy, slim, survived a quad bypass in her 70's and is now in her 90's.

[Levo50 in reply to v6mikey1]

v6mikey1 Me too! Such an eye opener isn’t it!?