TSH 6.54. What do I do?

I had my private results yesterday and I am a little confused.

My previous results were

January 2013

TSH 4.9

FT4 10.4

August 2015 (Taken at 9am after breakfast)

TSH 5.35 (0.36-5.5)

FT4 11 (7.0-17)

Dec 2015 (taken at 1pm)

TSH 2.96

FT4 10.2

I have recently gone gluten free, only change in circumstances.

Private Blue Horizon results received yesterday (on photograph) taken at 7.30am fasted.

TSH has gone up, T4 is now higher so I am doubting GP will treat? As I have said before my GP told me when my TSH was 5.35 they wouldn't check unless TSH reached 10 and that I wasn't even above the NHS range so I was fine. Now I am over the NHS range of 5.5 but is high TSH alone enough to diagnpse an underactive thyroid? I have been symptomatic for 8 months. Crippling fatigue, vertigo/dizziness, feeling cold all the time, weak legs, unable to exercise ( i exercised daily before) high anxiety due to how weak and dizzy I feel, brain fog, poor concentration, high cholesterol (6.9 total) and can't lose weight.

The only medication I am on is Loestrin 20 combined pill to control heavy periods I started with 3 years ago. Also Mirtazapine 15mg to help my anxiety, I have been on that 2 years. But my TSH was 4.9 in 2013 before I even took Mirtazapine.

Do I have a case with my GP? I am planning a second Blue Horizon mid March under their doctors advice.

This was BH doctors report....

The Thyroid Stimulating Hormone (TSH) is elevated. If you are already taking a form of thyroxine, it is possible that that your dose is too low or that you have forgotten to take it on occasion. It may be that an increase in dose is in order - if adjusted it would be sensible to repeat thyroid function (TFT) testing in around 2 months’ time. If you are not taking thyroxine, and this is the first time TSH has been noted to be high, it is possible that 'non-thyroidal illness' or other medication effects are the cause of the elevation. It may be that hypothyroidism (underactive thyroid gland) is about to develop. In these scenarios, it would be advisable to repeat thyroid function tests in 3 months’ time. I would suggest undertaking this repeat test sooner if symptoms develop.

Thank you

Julie

[Hidden]

Did your GP have an explanation for all your symptoms then? He can treat, will see if I can find the document.

[Hidden in reply to Hidden]

In the summer I saw him and told him how tired I was and just so anxious because of how weak and ill I felt so I wasn't going out much. Yes I do have anxiety but it got much worse when the fatigue hit. I kept saying if this fatigue would lift I'd feel much better. He ran bloods as he said it could be my thyroid. Told me I was fine and it must just be anxiety making me feel tired etc....

That is why I have gone private for this test.

[Hidden in reply to Hidden]

Have a read of this:

thyroiduk.org.uk/tuk/guidel...

How is your ferritin, vit D, vit B12 etc ?

[Hidden in reply to Hidden]

Ferritin was 15 I August. It's been low a very very long time. Now at 31 as I supplemented. Gp admitted this has been low a long time but never investigated why. My b12 was 212 but now 501 as I supplemented myself as gp said 212 was fine.

Thank you.

[Justiina]

I don't think you need to be tested anymore. Save that money for private doctor. Your TSH has been high for some time already.

You are very symptomatic with high TSH. Even if your T4 is in the range you might still feel hideous as many people feel better when it close to upper end of range.

There is enough reasons to trial T4 and if your GP refuses it then go private. They might not need to run more tests as your current BH tests is taken just few days ago.

Call and ask or email and ask if possible. I ask before booking an appointment that what are the procedures at their practice and is there point to book an appointment. Or ask around if there is private practice close to you someone recommends.

[Hidden in reply to Justiina]

Thank you. I think my GP even though he said I am not even out of their range of 5.5 and I am now at 6.54, he would argue that my FT4 is now fine so therefore I am not hypothyroid.

Thank you for your advice,

[Justiina in reply to Hidden]

If you did not have any symptoms, then it could be different thing. But as you are very symptomatic then at least trialing should be considered. What is the harm there? It is perfectly safe to try out, at least thats what doctors over here have stated. If patient has abnormal TSH and is very symptomatic there is good reason for trial.

In a good case your symptoms will improve. In worst case it does not work and you have to self-medicate or it is just anxiety and you have to concentrate on that.

Go to private and tell them this is ruining your life, you are a mother and a wife and cannot function properly!

[Hidden in reply to Justiina]

Thank you Justine. .

Great advice. 😊

Im just worried he will say raised tsh only doesn't make me hypothyroid and I will feel an idiot lol.

[Justiina in reply to Hidden]

Sounds lame to say I know how it is, but this time I do.

I have contacted doctors and begging to get ultrasound scan. They have responded but I can't make myself to read it. I am scared of getting one more "it is in your head".

So I know this doctor is very skilled and respected surgeon, specialising thyroid. If he does not see any reason then who would.

I recognise the anxiety you have. I have had something similar, not sure who to believe and what to do. I have wasted so many years of my life thinking it is all in my head. If I did not understand English I would be so much worse. Information available in my language is not a lot.

To me even joining this community was hard as I am perfectionist and I thought my language is not perfect enough. I felt I ask stupid questions. At first took me a bit of time before I could read the responds. So all this has affected me negatively. It has made me unsure so it is really hard to explain myself to doctors and demand better.

But it has also made me angry and bitter. One click has been between me and my health. All the time doctors just needed to check my history to see there is a reason.

They did not. One simple click. One second has ruined half of my life.

Don't let your doctor walk over you. Trialing T4 could be your one click. Simple task the doctor can do which can change your life!

[Hidden in reply to Justiina]

Justina,

I wish I could speak another language as well as you speak English.

I enjoy your input on histamine and autoimmune references and have learnt from you.

We all suffer anxiety - just part & parcel of endocrine issues but nobodies questions are ever stupid.

Flower

[Justiina in reply to Hidden]

Thank you I always loved English lessons , was my favourite thing at elementary school. Luckily it is still my passion and I am eager to learn more. It helps me to seek information and talk with people all around the world. That has really helped me as I have said information available in finnish is poor!

Naturally some medical stuff can be a bit hard for me to understand right away, but then I ask someone if I have got it right.

This forum and all people are so amazing and fun to talk to. No one judges. It feels so good to find people like you, you don't have to explain yourself and see other people looking like a big question mark.

This is the best forum I know. People are active and very smart, knowing a lot and sharing it all.

[shaws]

I'm sorry you do not have a case against your GP - otherwise most of them would be in court to do some explaining about their chronically ill patients, despite being prescribed.

You are also in the same situation as many members. Doctor unable to help due to the TSH alone and ignorance of clinical symptoms and sticking to the stupid guidelines. BH is surmising you might well not be medicated but you are!

Are your vitamins/minerals good?

If we want to get better we have to read and learn and recover our health, DESPITE the guidelines.

You would really expect to have some relief of symptoms when, eventually, put on levo but due to your clinical symptoms whilst medicated, it is ridiculous i.e.:-

Crippling fatigue: vertigo/dizziness: feeling cold all the time: weak legs: unable to exercise: high anxiety: feel, brain fog, poor concentration: high cholesterol (6.9 total): weight.

All of these should be relieved when on the correct dose, or combined dose at an optimum level to relieve them.

I think you may have to self-supplement .

web.archive.org/web/2010112...

I have re-read and realise your not on any thyroid hormones at all! unbelievable if true.

[Hidden in reply to shaws]

Thank you.

No I am not on any thyroid medication, never have been. I have been trying to prove I am hypothyroid for 6 months and my GP will not help. I have had symptoms since 2013 and my GP is the one who suggested it and tested me then to tell me my levels were fine (see 2013 results in post) and this summer he again suggested underactive thyroid only to say results were fine. That's when I got a print out and posted here for advice.

Sorry I didn't mean case as in taking him to court, I just meant do I have any chance of getting my GP to listen?

My B12 in August 2-15 was 212 and went up to 501 after i self supplemented it, in recent test in December 2015. Ferritin has always been low at anything from 8 to 15. 15 in August test and after supplementing it's gone up to 31. My iron levels are fine other than the ferritin. Vitamin D has not been tested.

Thank you for your help.

[shaws]

I was taking the mickey about taking him to Court. Sometimes I do think they should have a refresher course at the very least but the BTA will have to change their guidelines.

Make an appointment and tell him you're a member of Thyroiduk.org the NHS choices for advice/help.

You've now had a private blood test and you are hypothyroid and should be on medication.

Some links which I hope are helpful to give to him (or you can write a note first and enclose them before your appointment), otherwise you will have to tell him you'll have to self-medicate as you've suffered for a long time now.

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

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/newspa...

[Hidden in reply to shaws]

lol! I see.

Thank you so much. I shall go armed with knowledge.

My husband thinks I should send him a letter with my results, list of symptoms ticked off and info I have been given here. He said otherwise he won't read any of it during an appointment as they give you 10 minutes and that's it.

[shaws in reply to Hidden]

I think husband's correct. They don't have time, he can also discuss it with his colleagues as well.

[Hidden]

I think now my T4 has risen from 10 to 14 in only 4 weeks he will argue I am not actually hypothyroid?

[foreversummer]

The heavy periods you have had for the last three years is quite likely to be a thyroid problem. You are hypothyroid and should be treated as such. Shame on your doctor for taking this stance. Get a copy of Dr Toft's article in Pulse Magazine from Louise Warvill, or buy his book in your local chemist. That may help to persuade him. You should not be suffering like this.

Foreversummer

[Hidden in reply to foreversummer]

Thank you. I will look for that.

My gp said my tsh at 5.35 was fine so last month when he took blood again but at 1pm and because my tsh was 2.96 he said i was fine. My t4 was 10 but he said well within range as range is 7-17. So I'm shocked my recent bh test she's my t4 at 14. I'm wondering why as it's never been tjat high on previous tests.

[Hidden in reply to Hidden]

The range for the BH fT4 test is 12- 22, so 14 is still low in range for their test. Different labs use different methods (different machines) for testing and that is why the "normal" range varies from lab to lab.

[Hidden in reply to Hidden]

Oh really. I have always wondered why ranges differ. But the actual results would be the same figures no matter the lab? Is that correct?

[Hidden in reply to Hidden]

No, if your test was done in a different lab the results would be different. That's why it's so important to know the reference ranges.

[Hidden in reply to Hidden]

Now I am confused lol. So my tsh might not be 6.54? If my gp did his own it could be lower? Confused now as I was told private be accurate and gp could agree to treat.

[Hidden in reply to Hidden]

TSH varies a lot through the day and from day to day, so it could be lower or higher. If the exact same sample of blood had been tested by your GP and by BH the results would still be slightly different as the labs have different reference ranges. Since the high end of BH reference range for TSH is fairly low I'd imagine that if you had had the same test done at your GPS lab then the TSH result may have been even higher.

I have to add that that I last worked in a lab 15 years ago and my memory isn't what it was, but that was certainly how I understood it!

[Hidden in reply to Hidden]

Thank you

How are the actual results different? I assumed lab ranges were just different depending on lab and health authority but an actual blood result is the same no matter where you live? So if my ferritin is 15 surely it's 15 no matter the lab?

[Hidden in reply to foreversummer]

Sorry I meant to say I'm sure he will now use the excuse to tsh alone isn't hypothyroidism as t4 has now risen.