HASHIMOTO - I am SO confused - PLEASE help

[aat021]

Hello everyone, I am loosing it with my GP and would like your help.

In May I had a routine blood test in Greece which showed that I have Hashimoto antibodies and TSH of 5.42. They told me I need to take T4 levothyroxine.

I start taking it for a few days, I come to England (where I live) and I tell my GP about it, she says that I need to repeat the test here, I have a blood test here, apparently comes up completely normal (I dont know if they checked for Hashimoto antibodies), they tell me I do not need to take any medication. I explain to the GP that I have already taken some days of T4 levothyroxine, she says I need to stop for 3 months and repeat the test.

I wait for three months, they repeat the test in England and they find the antibodies for Hashimotos (probably did not check before) and something like a 2.5 TSH.

In the meantime, right after that test, I fly to Greece, where I see an endocrinologist, and he performs another blood test and an an Ultra sound, during which he finds a nodule in my right lobe. He tells me I need to take t4 75mm levothyroxine. I quote his report:

'Chronic autoimmune thyroiditis (Hashimoto).

In the right thyroid lobe, exists nodule 6,0mm, with intensive blood circulation in the interior.

In the left thyroid lobe, nodular alteration 13,4x10,3x18,0mm, that happens because of the chronic alterations due to Hashimoto's thyroiditis.

The results of the blood tests are:

TSH (16.05.17) 5.42 μUI/ml (high) and again (06.09.17) 4.52μUI/ml (high).

FT4 (06.09.17) 10.4 (in the lower levels).

antiTPO (+)

It is necessary to prescribe medication, hormone replacement with L-thyroxine 75μg daily. After 3 months it is necessary to repeat blood test for measuring TSH, FT4 and after 6 months to repeat ultrasound in the thyroid.

'

To top it all off, he tells me that the FSH/LH/E2 blood results show that I am in Early Menopause (!!), and I am 37 without a family which has shocked me as I will need to think seriously about all this.

I come back to London, I show my GP these results, she tells me she will email the endocrinologist about all this, and apparently the endocrinologist has said, I do not need to be on medication, the results are in normal range, Hashimoto's does not mean that I need medication, it means I need to observe it, and that I do not need medication 'except if she's trying to get pregnant'. What does that mean? I ask. Why do I not need medication unless I am trying to get pregnant? What difference does this make?

Also, the FSH results show that I am in Early Menopause.

Can I maybe have a referral to see the Endocrinologist? My GP says it's not needed, the endocrinologist can reply by email.

What about the nodule? I ask. The GP says 'it shouldn't be a problem, but we will repeat the Ultra sound here to see if there is anything' (I told them I can give them pictures of the Ultrasound in Greece but something about it needing it to be in their system - fine - I'll go for another US)

Now I am asking you, dear community, what do you think about all that?

I am loosing my mind.

She's there telling me that I should not take medication, that 75mm is too high a dose anyway, that they always start with 50mm, and that the Endo is saying I shouldn't take any medication and their tests show 2.5 while the Greek tests show 5.5 (TSH) and I am thinking maybe they are not as sensitive or what?

And when I told her that, she told me that the Endo here told her that even with the Greek levels he wouln't recommend me taking medication.

What is happening?

I need to know my rights - can I not have a referral to the Endocrinologist? Do I have to go through the GP?

Any advice would be appreciated.

Best

aat021

[greygoose]

As far as I can tell - although I don't live in the UK - under the NHS, you have no rights at all! And, I very much doubt if seeing an endo would help you, anyway. They know nothing about thyroid, and the one your GP has been contacting is a pretty average example of their attitude to thyroid. They do not want to diagnose and they do not want to treat if they can possibly help it.

I'm on the side of your Greek endo. He obviously know more about thyroid. He is the one that is right. But the NHS is 'special' about thyroid. It doesn't want to know! It will grudgingly give you a diagnosis once your TSH goes over 10, and then prescribe as little levo as it possibly can - just enough to keep you alive, but not enough to make you well. It's a terrible situation, in the uk!

[Angel_of_the_North]

Were the blood tests done at the same time of day? Did you take your levo before the NHS blood test? Did you eat before the NHS blood test?

[Marz]

For some arrogant reason the UK Docs do not like seeing the Greek results. I live in Greece and was diagnosed here with Hashimotos back in 2005. The TSH - FT4 - FT3 were all in range but the Anti-bodies and scan confirmed Hashimotos and so treatment commenced. My GP here explained the T4 was to support the thyroid whilst under attack. Had I remained in the UK I guess I would have remain untreated and be sleeping between meals for hours on end

My daughter also had tests here and a scan which raised concerns and which her UK GP ignored - did his own testing twice and declared it was all in her head. Months later after seeking a private appointment which resulted in having her thyroid removed due to cancer.

I am not for one minute inferring that is your situation - just wanted to share another experience with you.

If you look up the signs and Symptoms of Folate Deficiency it may give you some information. B12 and Folate work together in the body - so it could explain your high level of B12 if there is not enough B9 to work with. Only a thought as I am not a medical expert just a Hashimotos gal with a B12 issue

I would suggest having a Fine Needle Biopsy - or Fine Needle Aspiration - different names in different countries.

Keep us posted !

[aat021 in reply to Marz]

Hello and thank you for all your replies!

I can continue being treated in Greece, it's just that it would be nice to have integration and communication between the two systems and not one going against each other.

If anyone understands ranges and stuff, I had two recent blood tests in Greece (which seem to be a lot more simple and effective and sentitive than in England) and in terms of the results were:

TSH = 5.42 and then 4.52

Thyroid antibodies (both types)

Anti-TG = 105,40 and then 84,62

Anti-TPO = 66,15 and 183,30

FT4 = 1.04 (only tested once)

Vit B12 = 255 and 328

Ferritin = 0,63 and 1,29

Someone also suggested that I should test for

FT3

RT3 (although that is really wishful thinking, as I'm not sure the NHS even do that test!)

Vit D

Folate

What you mention about Folate Deficiency is interesting as I remember the Greek doctor telling me I am really low on Vit D, Vit B12 and very very low on Iron levels.

How do these levels look?

Best

aat021

[Marz in reply to aat021]

I apologise - I confused you with another regarding the B12. Someone else had High B12 and Low Folate. But yours looks low in range.

It would be helpful to have the ranges as well - as labs do differ.

Yes it would be helpful to have the FT3 done and the other tests mentioned. If your GP is not helpful then you can have Private Testing done at home through Thyroid UK - see link below.

thyroiduk.org.uk/tuk/testin...

Your London GP should know that when people suffer with Hashimotos that the TSH levels can fluctuate. Have you considered healing the gut by giving up gluten to see if it helps ?