TSH levels!: Ha ha! There is me going on about... - Thyroid UK

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TSH levels!

JOLLYDOLLY profile image
17 Replies

Ha ha! There is me going on about suppressed TSH levels and I have just had a phone call from the Dr's - the GP wants to speak to me about my TSH level, everything else is good but my TSH has gone from 0.54 to a whopping 4.87! range = 0.27-4.2 T4 = 14.8 range 12-22 Hemoglobin = 49, so back into diabetic range.

They did not test T3 levels surprise surprise!

What does that indicate to you all? I am on 200 mcg T4 and 20 mcg of T3 at the moment.

Very upset I may have gone into diabetic range again.

I know being postmenopausal can change a lot but never experienced this before.

Can anyone advise or tell me more about the difference in the TSH levels and the big difference. I am quite shocked to be honest. Never had a high level like that before.

Can grief change things as well?

I am prone to choking fits, but I put that down to the sleep anpnoea I have and stress. I live in fear of a goitre, which my parents were told that I may get when I was a baby.

Thanks in advance

:) xx

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JOLLYDOLLY
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17 Replies
humanbean profile image
humanbean

Hemoglobin = 49, so back into diabetic range.

Did you mean HbA1C is 49?

JOLLYDOLLY profile image
JOLLYDOLLY in reply to humanbean

Hi humanbean,

In answer to your question, Yes I do mean that. It went to 49 before when I came out of hospital a few years back because they lowered my medication. I have since been in the normal range until now.

:)

shaws profile image
shawsAdministrator

I reckon you need an increase in thyroid hormones.

I am assuming you had the earliest possible blood test, fasting, and allowed a gap of 24 hours between last dose and test?

JOLLYDOLLY profile image
JOLLYDOLLY in reply to shaws

Yes I did Shaw.

My test was at 12.00 noon but I had not eaten anything or taken medication. Just drank water. I was hoping when they said full bloods that they had checked my cholesterol and T3 as well but they did not.

shaws profile image
shawsAdministrator in reply to JOLLYDOLLY

12 noon is rather late but the fact that your TSH is much higher you need an increase in levo.

JOLLYDOLLY profile image
JOLLYDOLLY in reply to shaws

Do you think grief and stress might play a part in all of this Shaw, I know it may sound silly but I am so low and depressed at the moment, never ever felt this low before :(

Thank you for your response so far x

shaws profile image
shawsAdministrator in reply to JOLLYDOLLY

Of course - those two sensations can be caused by grief. Some people are knocked for six when someone close to them dies.

We have to slowly recover from grief which is a natural thing to do, so just take things day by day.

However your thyroid hormone replacements have to be optimum so you have a fighting chance to overcome 'depression'etc. Your high TSH shows you are on insufficient. When we take a combination of T4/T3 research has shown that a 3:1 combination was best. That doesn't mean, of course, that we are all completely idenical.

JOLLYDOLLY profile image
JOLLYDOLLY in reply to shaws

I think I was so shocked because my TSH are normally suppressed, the last one was 0.54! So a huge difference. Obviously my main concern is that they will use this as an excuse to up the T4 and take me off the T3 because of all the controversy. :(

Clutter profile image
Clutter in reply to JOLLYDOLLY

JollyDolly,

You need a dose increase of 25mcg Levothyroxine. There's absolutely no excuse for reducing your Liothyronine dose unless FT3 is over range and they haven't checked that.

JOLLYDOLLY profile image
JOLLYDOLLY in reply to Clutter

Thank you Clutter :) But I don't trust these Dr's, any excuse :(

Clutter profile image
Clutter in reply to JOLLYDOLLY

JollyDolly,

If T3 withdrawal is mentioned tell your GP you will be formally complaining to the GMC that you are being denied treatment you have been told you need. Have a look at the info below:

Say you have been well on Liothyronine and wish to continue taking it. Show your GP the BTA FAQs below.

The BTA issued guidance that patients doing well on T3 should not have their prescriptions with-drawn. See FAQS for patients and GPs in british-thyroid-association...

CCGs do not have the authority to tell GPs what not to prescribe. Individual GPs, not CCGs, could be found in breach of the General Medical Services contract if they do not prescribe treatment patients have been told "they need".

bmj.com/content/358/bmj.j36...

The GPC has warned that GPs would be in breach of the GMS contract and could get into legal trouble by following the orders and refusing to prescribe patients treatments they have told them they need.

gponline.com/gpc-warning-ig...

CCGs are expected to do impact consultations with the public and stakeholders before implementing change. Failure to do so leaves them open to legal challenge so check whether your CCG did an impact consultation before advising your GP to withdraw T3.

mills-reeve.com/files/Publi...

JOLLYDOLLY profile image
JOLLYDOLLY in reply to Clutter

Thank you Clutter I have downloaded the above information especially from BTA. I appreciate your help. :)

SlowDragon profile image
SlowDragonAdministrator

I would ask GP to test vitamin D, folate, ferritin and B12 too

Or test privately if they refuse

JOLLYDOLLY profile image
JOLLYDOLLY in reply to SlowDragon

Hi SlowDragon,

I am already on medication for anaemia, B12 jabs and vitamin D. Have been on them for years. Those results were all fine. So happy with them. But thank you for advising me. I appreciate it :)

SlowDragon profile image
SlowDragonAdministrator in reply to JOLLYDOLLY

That suggests you have very poor gut function and addition of T3 essential

Low vitamins are direct result of inadequately treated hypothyroidism

As you have B12 injections do you also supplement for low folate. Usually recommended on here to also take a good vitamin B complex that includes folate daily

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

B12 info

aafp.org/afp/2003/0301/p979...

B12 generally

drjockers.com/warning-signs...

Vitamin D needs to be around 100nmol

Do you also supplement magnesium and vitamin K2 Mk7?

JOLLYDOLLY profile image
JOLLYDOLLY in reply to SlowDragon

I have a B12 jab every 3 months (used to be every 2 months), I take 310 mcg of iron supplement every day and two times vitamin D. My liver function test and folate/ferritin levels were normal results. I am happy with those results.

JOLLYDOLLY profile image
JOLLYDOLLY

Follow on from original post.

I spoke to my GP today about my results. He asked how I was and to be honest, I feel good on my thyroid meds. So we are going to leave everything for now and retest everything in three months. He was concerned about the grief I am experiencing and said that might have been the slight shift. So, we will see in the next lot of results.

Was also happy with the HbA1C result and said that he felt that it just right it self when the thyroid results go back to where they were. So happy again.

No mention of T3 medication, just told to carry on. So if they do not do the T3 test, I am not asking especially if it means I get my T3 medication still.

Feeling relieved and happy today :)

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