New to all this.: Im a 47yr old male and have... - Thyroid UK

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BiffAHiram profile image
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Im a 47yr old male and have recently been having blood tests after displaying all the standard underactive thyroid symptoms including huge fatigue. After being put on 25mg levothyroxine (to get me started on medication), the most recent tests showed a TSH of 3.6 (coming down from 6.2 on previous test) which is now within normal range from what i understand.

Im still feeling massively lethargic and achy along with all the other original symptoms still present.

They also did a TPO test and my thyroid peroxidase antibody level is saying abnormal at 1274 ui/ml.

Can someone explain what this means please?

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BiffAHiram
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greygoose profile image
greygoose

Hi BiffAHiram, welcome to the forum. :)

Well, your TSH may have come down, and now be in range, but it's still much to high. A euthyroid TSH (i.e. one with no thyroid problems) is around 1, and hypos usually need it lower than that because they need their thyroid hormones higher in range than euthyroid levels.

But why were you started on such a low dose? The usually starter dose for levo is 50 mcg. 25 mcg is not going to do much for you - as you've found out. When did your doctor say to go back for a retest?

As for the TPO antibodies, they are just an indication that the cause of your hypothyroidism is Autoimmune Thyroiditise - aka Hashi's. The level of the antibodies is nothing to worry about, you have the test just to see if they're positive or negative - yours are positive, obviously - but antibodies fluctuate all the time.

Hashi's is an autoimmune disease, as I said above, where the immune system slowly destroys the thyroid mistaking it for the enemy. There is no known way of stopping this. The disease just has to take its course. And you will need increasing levels of thyroid hormone replacement (levo, etc.) to keep you well.

It's important to note that it's not the antibodies attacking the thyroid, as some people - including some doctors - believe. The antibodies just come along after an attack and clean up the traces of TPO and Tg that have leaked into the blood.

When you go for your next blood test, it is important to make sure the blood draw is early morning - before 9 am - after fasting over-night. Leave a 24 hour gap between your last dose of levo and the blood draw. This will give you the highest level of TSH and the most acurate level of FT4.

You should also ask to have your nutrients tested: vit D, vit B12, folate and ferritin. All nutrients need to be optimal for your body to be able to use thyroid hormone correctly.

Always, always asked for a print-out of your blood test results. You need to know exactly what was tested and exactly what the results were, and keep your own records. If you post the results and the ranges on here, people will be able to help you interprete them. :)

Hashiboy profile image
Hashiboy

 BiffAHiram hi there, sorry to hear you are still feeling tired and achy. I’m sure you’ll get lots of good advice here. This my take on your situation, hope it is helpful.

1) with an initial TSH of 6.2 you will have fallen into the grey area of possible but not definite hypothyroidism by NHS guidelines. A definite diagnosis starts at about a TSH of 12. For this reason your GP is trying you out on a very small starting dose of levothyroxine. Your GP may well say that your on an TSH of 3.6 you are fine now and leave it at that. It’s really important you get treated on the basis of how you feel as that’s the most important thing and that they offer your more levothyroxine until you feel well.

2) levothyroxine is great for 80 to 90% of people but it takes ages (about 8 weeks) for your body to stabilise and improvement to show. So you’ll need to wait 8 weeks between each dose increase to see how it affects you.

3) if you started the 25mcg more than 8 weeks ago and still feel tired, achy, brain fog etc it’s time to explore an increase in dose. You probably want to add in another 25mcg and retest and check symptoms in another eight weeks . Keep adding until you feel fully well

4) you might get advice to test for antibodies and T4 and T3. Your GP probably won’t do this and probably won’t know what to do with any of the results. That’s fine, your aim is to get them to keep increasing levothyroxine until you feel better and not simply say your TSH is normal now. Your GP will focus on TSH which is fine but your symptoms should be the main guide. Save the more complex tests for the future if you are still struggling after getting to a good dose of levothyroxine. . It’s really helpful to have a good GP who you can work with and who will add more levothyroxine as needed. This is especially important for you as your original TSH is in that grey area where the NHS sometimes won’t treat.

So keep things simple and focus on getting the to prescribe a level of levothyroxine that relieves your fatigue.

Good luck and hope you feel better soon.

DippyDame profile image
DippyDame

Welcome!

"which is now within normal range"

Don't be misled by this..."normal" is not a diagnosis!

Relying on this leaves patients unwell and still wrongly medicated

Being within the reference range does not mean we are well....it is the actual point within the range where we feel well that is the aim

Ranges quoted by labs will represent the values found in 95% of "normal"/ euthyroid individuals in the chosen ‘reference’ group. In other words, even in a "normal" population, a test result will lie outside the reference range in 5% of cases. This is why the term "reference range" is preferred over "normal range".

When medics diagnose, guidelines inform them that they must consider not only lab numbers but the patients symptoms and signs....many forget this!!

A gluten free diet helps a lot of people with Hashi's, otherwise a correct dose of levo is the treatment. Your antibody levels will fluctuate, you will just have to accept this I'm afraid until they settle again.

As the others have explained TSH of 3.6 means you are still undermedicated and after 6/8 weeks on a steady dose of 25mcg ( why so low unless you are a child or frail!) you need an increase followed by further testing. This pattern should continue until you are symptom free and have found your therapeutic dose.

Initially, consult your GP and explain that you are still symptomatic and need your TSH to be 1 or under.. so you need an increase of 25mcg.

Basically, we all agree you need more Levo!

You can learn more here

thyroiduk.org/

We're all here to help...just ask

BiffAHiram profile image
BiffAHiram

Ive just come back from the doctors appointment so they could tell me the results that they had already posted in my patient records. It wasn't the original doctor that i seen this time. But, now im even more confused and also annoyed and feeling mentally low.

Basically........

The quack said exactly what you guys said would happen and told me that:

1) I was showing normal TSH within range.

2) The meds must be working as my levels had dropped.

3) That i should stay as i am on 25mg Levo.

This was met with an argument of the 1pm blood test that was undertaken was too late in the day, after i had taken my meds and also eaten.

The doctor said "that isn't how it works" and that the blood test track the levels over 3 months.

To this i responded with the fact that im still feeling as unwell as i ever did with all the original symptoms still presenting and that the symptoms need to be treated and not the range number.

I then had to explain all symptoms again, which i did in detail to make sure she got it.

It was then that she may have realised I've researched a little and she then unsuccessfully tried to phone the on-call Endocrine Registrar and also the Consultant at Leicester Royal Infirmary a good few times but to no avail as the dont pick up their on-call phones. He was pretty annoyed at that and swayed a little more in my favour.

She did admit that im definitely hypo and that my elevated antibody level (1274) pointed to auto-immune issues to which i said Hashi's. She nodded.

She basically then said that my case is complex and that she needed more specialist advice (which i took as she wasn't clued up enough on the subject)!

Before i left, she explained that she may try 50mg one day and 25mg the next day, but will contact me to explain what the Registrar or Consultant have said.

Is this alternating dosage even a thing??

tattybogle profile image
tattybogle in reply to BiffAHiram

50 /25 alternate days , yes , it's a thing .... it equates to a daily dose of 37.5mcg (T4 has a very long half life of 7 days in the blood . so it evens out) . Taking a slightly different dose each day is the usual method of prescribing dose adjustments smaller than 25mcg )

tattybogle profile image
tattybogle in reply to tattybogle

a GP does not need to consult endo to increase dose when TSH is 3.6

if symptoms still present then at this stage an increase to 50 mcg /day should be routine work for a GP.

plenty of recommendations , some written specifically for GP's here :

healthunlocked.com/thyroidu.... my-list-of-references-recommending-gps-keep-tsh-lower-in-range-

(all recommending they aim to get TSH below about 2/ 2.5 in all patients on levo)

tattybogle profile image
tattybogle in reply to tattybogle

edit ... oops , can't add up, sorry :)

50 / 25 alternate = 37.5mcg / day, (not 62.5 )

BiffAHiram profile image
BiffAHiram

Just had a call back from my doctor after they have spoken to the on-call endocrine consultant. He has advised that i immediately be placed on 50mg of Levo and book a blood test for 6 weeks time.

Starting to now get somewhere.

Thankyou so much to you guys for your help, advice and putting up with me.

humanbean profile image
humanbean

Just a couple of points :

Hashi's is short for Hashimoto's Thyroiditis and is the commonest cause of hypothyroidism in the UK. About 90% of hypothyroidism in the UK is caused by Hashi's.

Most people use Hashi's to refer to autoimmune hypothyroidism.

Hashi's causes hypothyroidism with a goiter/goitre.

Ord's Thyroiditis also causes hypothyroidism but it makes the thyroid shrivel up i.e. no goitre.

en.wikipedia.org/wiki/Hashi...

en.wikipedia.org/wiki/Ord%2...

Poor old Mr Ord is hardly remembered these days, and almost all autoimmune hypothyroidism is referred to as Hashi's.

In other parts of the world a common cause of hypothyroidism is iodine deficiency, and theoretically it could happen in the UK but it is believed to be rare.

humanbean profile image
humanbean

Some links you should really become familiar with, because the info contained can help in dealing with doctors :

healthunlocked.com/thyroidu...

The graphs in that above link explain why we suggest getting tested early in the morning. TSH (at least during office hours when blood tests are carried out) is highest then. And since doctors rely almost completely on TSH to diagnose and treat underactive thyroid it is important to get the TSH as high as possible for hypothyroidism to be diagnosed and properly treated. (If that is even possible. My surgery won't do any thyroid blood testing in the morning, they insist on doing it in the afternoon. *rolls eyes*)

Another link that is worth being aware of :

healthunlocked.com/thyroidu...

The graph in the above link can be found here in its entirety :

web.archive.org/web/2004060...

The table with TSH values for different ages and genders came from a paper that used to be freely available online, but it has been hidden behind a paywall now.

BiffAHiram profile image
BiffAHiram in reply to humanbean

Thankyou for your reply and the links. I shall delve into the information ASAP.

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