General worries prior to NHS endo appt that might not go anywhere given I am euthyroid.

[Halinka]

I'm on 10mcg of t3. Most recent bloods came in as tsh 0.98 (0.35-5.5) and FT4 8.6 (7.86-14.41). I tested before taking t3 (which I take at 8am and 4pm). If I'd taken the t3, would that have resulted in lower or higher tsh and Ft4?

I see the endo tomorrow. I really don't know what to be asking for aside from my ft3 testing. I shall share with him symptoms - exhaustion, air hunger, dizziness, anxiety. He has mentioned putting me on combo therapy, I guess levo and t3 or NDT. I like the idea of NDT as its natural but am not sure if it's the best.

More generally, I do wonder if, given that I am euthyroid Hashimoto's (it was the antibodies and family history that led to a diagnosis) that perhaps I am medicating before I need to because I am interpreting my symptoms as being thyroid related when perhaps its just depression. What is the thinking on medicating early in Hashimoto's?

[Clutter]

Halinka,

Taking T3 before your blood draw won't have affected TSH or FT4.

Most UK doctors appear to think that symptoms are non-thyroidal unless patients have abnormal thyroid levels and are hypothyroid. As a previously euthyroid Hashi's patient who was very symptomatic I think that view is very wrong.

medscape.com/viewarticle/76...

Dr, Toft considers euthyroid Hashimoto's to be a mild form of hypothyroidism which it may be pragmatic to "nip in the bud" before it progresses.

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

NDT isn't licensed for UK use so a NHS endo is unlikely to prescribe it.

[Halinka in reply to Clutter]

thanks

[greygoose]

I totally agree with Clutter. Although, I would add that your results are probably only euthyroid because you're taking the T3! Do you know what they were at the time you were diagnosed?

Just depression? I don't think there's any 'just' about depression. But depression is more than likely caused by low thyroid. I really don't think depression causes air-hunger and dizziness.

It's doubtful that your endo would prescribe you NDT. And, in any case, I don't think NDT is as 'natural' as it's cracked up to be. The different thyroids have to be dried and processed, and have fillers added to make them into pills. If you want really natural, take a bit out of a pigs gland! And, in any case, it doesn't suit everyone, despite what some sites say! So, don't run away with the idea that it's 'the best'. The best form of thyroid hormone replacement is the one that suits you.

Have you tried T4 (levo)? It's rather unusual to start out on T3 only. And that might be all you need. How do you feel on it?

Yes, you need your FT3 tested, and it could be low. But, from the symptoms you've listed, I'm inclined to think that your vit B12 is low, too. Have you had that tested? I can't find a result for it. Low B12 can cause horrible symptoms! So, ask him to test that, too.

Good luck with your appointment.

[Halinka in reply to greygoose]

Thanks Grren goose. Was euthyroid at diagnosis by a private endo. Had raised antibodies.

Was on a trial of Levo 25 mg. it didn't do much. Then tried t3 at 10mcg.

Had bit b12 tested using that special test (forgot name). It wasn't just high. It was replete.

X

[greygoose in reply to Halinka]

Oh, GREEN goose! I like it! lol

Just telling me you were 'euthyroid' doesn't tell me anything. If your doctor just said you were euthyroid without giving you the numbers, then that was just his opinion, not fact. If it were me, I would want the exact numbers to make sure.

Of course 25 mcg didn't do much! It's less than a starter dose. How long were you on it? It would take six weeks to become fully active. And by then, you would be ready for an increase. You didn't exactly give it a fair trial, did you. lol

What was the number and range for the B12, if you don't mind me asking?

[Halinka in reply to greygoose]

Sorry Greygoose...

These were my results on which I was diagnosed. They were done in Poland and so the ranges are a bit different:

TSH 2.226 (0.35-4.94)

Free T3 2.59 (1.71-3.71)

Free T4 0.81 (0.7-1.48)

Anti TG 40.33 (<4.5)

Anti TPG 55.26 (<6)

My active vitamin B12 test, the one recommended on the Thyroid UK site. The result was 120 when the range is 20-108.

I was on 25mcg of thyroxine for about 3 months. I tested at that point and had a tsh of 1.48 and a FT4 of 12.2 with the NHS usual ranges. My ferritin was 25 (range 22-300). The hospital refused to do my T3. The endo then started trialing me on T3.

Please note the main thing being addressed was my awful depression and anxiety. These have improved but how far it was T3 and how far a new antidep (Venlafaxine) its hard to say. I’ve been on T3 for 6 months but not seen an endo in that time as I was broke.

More recently, I have been referred to an endo on the nhs (at last). It will be the same guy I saw privately. The big change in the last month has been awful, awful exhaustion, dizziness and poor concentration.

Hx

[bluebug in reply to Halinka]

No wonder you feel dizzy and breathless you are iron deficient!

While a ferritin level of 25 is in the range it is not high enough for your body to function properly. Unfortunately not all UK doctors recognise low ferritin levels even though they are in range cause problems. The minority that do only recognise a number under 30 as being deficient.

If you are are not supplementing iron you need to take one ferrous fumerate tablet twice a day with vitamin C. Take it 4 hours away from any thyroid medication and 2 hours away from any other supplements and food.

You can buy ferrous fumerate from your local pharmacy or the pharmacy counter in Boots, Asda, Sainsburys etc. You may need to say to the pharmacist you are low in iron so have been told to get it. Alternatively you can buy it on Amazon from a pharmacy. Make sure you get an 84 tablet pack. You need to have a ferritin blood test 7 days after you have finished the pack.

Then if your numbers are not at 100 you need to take one ferrous fumerate a day until it gets there.

The information on this is here patient.info/doctor/non-ana...

[Halinka in reply to bluebug]

Thank you Blue bug x

[greygoose in reply to Halinka]

Well, your results were in range, but l wouldn't call the euthyroid. A TSH of over 2 means that your gland is struggling. And your FT4 was very low.

But, there, you do seem to be converting very well.

You should not have been left on 25 mcg for 3 months! That's much too long. Being on too low a dose - and 25 was too low, you should have been started on 50 - has a negative effect on the metabolism.

There are no NHS usual ranges. It varies from lab to lab depending on the machine they use. But that FT4 dose look low - possibly even lower than before you started the levo. That can very well happen when the dose is too low. I think your endo should have tried increasing the levo before going onto T3.

I agree with bluebug about that awful ferritin!

[Halinka]

Thanks for all the support and thoughts. Off to the endo in a mo. x

[Halinka]

Haven't had time to write up my NHS experience with the endocrinologist but it was a complete disaster. Will do in due course.