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[JOLLYDOLLY]

I have been checked for many things recently, but had to be rechecked for my thyroid condition as I was borderline last time for possible increase. Also I was pre-diabetic on H1ac - last time it was 47 and now 44.

My TSH last time was 4.57 and now is 1.49 (do not know range)

Free T4 is 21.9 (Range is 12.22)

Can someone explain how the TSH works in comparison to medication - I never understand this and have been on medication always.

My medication is going to be kept the same which is 200 mcg of T4 and 10 mcg of Liothyronine. (They did not test T3 or anything else related to my thyroid)

However, I have high levels of Uric acid and also markers for RA and Gout! So being referred to a rheumatologist.

Thanks in advance.

[pennyannie]

Hey there :

It's difficult to give you an informed opinion as there isn't sufficient information to work from.

You TSH could still be lower, if dealing with AI thyroid disease, as we generally feel better at 1 or lower:

It has dropped considerably since the first test, was this when the T3 was introduced?

Though taking Liothyronine you haven't a measure - do you feel any better ?

It would also be necessary to test ferritin, folate, B12 and vitamin D as no thyroid hormone works well if these core strength vitamins and minerals are not maintained at optimal levels.

[JOLLYDOLLY in reply to pennyannie]

I have been on Lithyronine for over 15 years but it was reduced from 20 mcg about a year ago and they rarely test T3 in the UK especially on annual checks.

I have B12 and vitamin D deficiency and also pernicious anaemia for over 20 years, but no longer iron anaemia. All these levels are at the right level, I checked this with the Dr this morning. The difference in the two TSH tests was over a three month period, between May and August of this year.

Thank you pennyannie.

[pennyannie in reply to JOLLYDOLLY]

OK, I know how it is as I have to pay privately to get my thyroid blood tests and I simply add the vitamins and minerals yearly, just to see where I am, as I supplement these daily alongside taking Natural Desiccated Thyroid as I'm self medicating lingering Graves, thyroid eye disease, caused by the RAI treatment, and hypothyroidism and the NHS have refused me T3 and NDT - so now I'm flying solo.

I'm sorry you have other health issues that contribute to your ill health.

It seems criminal to me that you were on T3 for 15 years and then became victim to these CCG rulings and presume in this past year, on a lower T3 your overall health has been further challenged.

Is there an option to top up your Liothyronine yourself ?

[JOLLYDOLLY in reply to pennyannie]

Ironically the reduction in T3 should have been reduced in 2016, but due to a typo and me not correcting them, it finally caught up with me and now on the 10 mcg instead of 20 mcg. I can not afford to source it myself, even if I needed/wanted to. I am also not strong enough to fight the CCG, after the horrendous battle with the Endo and hospital - she was evil and denied everything she said, when I made the official complaint.

I am happy on my current medication to be honest. I was on 200 mcg before my troubles, I call it my natural dose. But this one dr reduced it to 75 mcg and my whole life changed. So after much ado, I am back where I started plus the T3. which I don't think I would have needed, had they not messed me around in the first place.

Just got to get this inflammation/arthritis sorted now. Hey ho, always something!

Thanks

[pennyannie in reply to JOLLYDOLLY]

Sending a hug - I challenged both my doctor and endocrinologist but when so poorly the stress this caused me exacerbated my symptoms setting me back health wise :

My doctor watched me go from a vibrant bubbly person so someone who couldn't string a sentence together and struggled answering basic questions as I was unable to find the words.

I thought I was loosing my mind to some other disease that was ' another ' mystery and that wasn't responding to the anti depressants that sat on my prescription even though I never asked or wanted them.

How can they look at themselves in the mirror ?

[JOLLYDOLLY in reply to pennyannie]

That was similar to me, I was slurring my words and physically could not speak. The only way I could describe it was like one of those toys that you wind up and as it unwinds, it gets slower and slower. One of my family members and a friend, accused me of having a drink problem - I don't drink!

It was a Gynaecologist that finally referred me to see a Endo - but back then, I was working, so had a private health insurance. Before the changes, I never had a weight problem or anything, was quite happy with everything. Now I am classed as morbidly obese and find it difficult to shift the weight. Has affected me so much. I know I have arthritis of some description in my lower back, but they would not and will not xray or scan me, just tell me I have sciatica and to get off my backside and lose weight??

Big hugs to you as well, always here for a chat. x

[pennyannie in reply to JOLLYDOLLY]

Oh !! not so jolly JollyDolly is it :

An unbelievable situation and one I can " ditto " -

Don't these people have a conscious ?

I'm so pleased I jumped ship, just wish I'd have known what I know now back in 2003 when diagnosed with Graves:

Talking of those winds up toys - I've been both ends of the cycle - and now found the middle lane self navigating.

Wishing you a pleasant evening, and yes, I'm generally hanging around here from the sofa, loitering with the intent of helping someone somewhere.

[JOLLYDOLLY in reply to pennyannie]

Yes I am loitering too. Feet up on my nice bed at the moment, trying to do some crochet, boring as it sounds, but keeps me out of mischief.

I would imagine with the Graves, it has been horrendous on all levels.

It doesn't feel Jolly sometimes, when they body shame you and the bottom line is, no one cares these days.

You have an lovely evening too and take care pennyannie x

[SlowDragon Administrator in reply to JOLLYDOLLY]

Please add the actual results and ranges on vitamin D, folate, ferritin and B12

Frequently what GP considers adequate levels are anything but

Considering you are taking T3 as well as 200mcg levothyroxine your TSH is high

Obviously essential to test TSH, Ft4 and Ft3 together

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

If/when also on T3 make sure to take last half or third of daily dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test

Is this how you do your tests?

Possibly cheapest option for getting all tested via DIY finger prick test

TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/thyr...

Medichecks - JUST vitamin testing including folate - DIY finger prick test

medichecks.com/products/nut...

Medichecks often have special offers, if order on Thursdays

Do you have Hashimoto’s?

Are you on strictly gluten free or dairy free diet

Do you always get same brand of levothyroxine

[JOLLYDOLLY in reply to SlowDragon]

I haven't got the B12 and folate results as it was not done this time. The TSH and TF4 were done to double check after my last reading. T3 was not done. I do not have Hashimoto's. I chose to do a gluten free diet and always get the same brand of medication. I never have meds or food before blood tests.

Thanks

[SlowDragon Administrator in reply to JOLLYDOLLY]

Come back with new post once you get results

Obviously vitamin D needs testing at least annually

vitamindtest.org.uk

How much vitamin D are you currently taking?

Are you supplementing a daily vitamin B complex?

As you have found gluten free diet beneficial and PA it’s likely you do have Hashimoto’s, just not diagnosed

...NHS usually only tests TPO antibodies

Have you ever had both TPO and TG antibodies tested ?

Many Hashimoto’s patients only have high TG antibodies and struggle to get Hashimoto’s diagnosed

Ever had thyroid ultrasound scan?

20% of Hashimoto's patients never have raised antibodies

healthunlocked.com/thyroidu...

Paul Robson on atrophied thyroid - especially if no TPO antibodies

paulrobinsonthyroid.com/cou...

[JOLLYDOLLY in reply to SlowDragon]

I was born with only a partial non working gland Slow Dragon, so been on medication all my life. Never had a problem with any medication until they started messing me around, 20 plus years ago. I was on 200 mcg of T4 before then without any problems.

As far as I know, never had antibodies tested only T4 and TSH. T3 was only tested in the private sector after they started messing me around and then when they were trying to take me off the T3 medication four years ago.

I have a B12 shot every three months. which is 1mg of Hydroxocobalamin. My late father had PA as well.

I take 2 x 1500 mg of Calcuim carbonate every day for vitamin D deficiency.

[SlowDragon Administrator in reply to JOLLYDOLLY]

Calcium carbonate is calcium (essential to take that four hours away from levothyroxine)

Does this contain any vitamin D ...if so how much (look on packet)

Suggest you get vitamin D tested

Easy test via a NHS postal if GP won’t do it

vitamindtest.org.uk

Yes current obsession by medics to reduce levothyroxine until TSH comes within range means many people are now very under medicated

On levothyroxine plus T3 you would normally expect TSH to be well under 1....more likely around zero

Do you take your levothyroxine well away from all other medication and supplements and always get same brand of levothyroxine

[JOLLYDOLLY in reply to SlowDragon]

Always take it at night and thyroid medication in the morning. I have not got the medication to hand at the moment but will double check. Thank you.

[SlowDragon Administrator in reply to JOLLYDOLLY]

On levothyroxine we frequently need relatively high dose vitamin D...aiming to bring vitamin D to at least around 80nmol and around 100nmol maybe better

Rare to need any calcium supplements if vitamin D is at good level

As you have B12 injections it’s recommended to supplement a daily good quality vitamin B complex as well. This helps keep all B vitamins in balance and helps maintain higher B12 between injections

Supplementing a good quality daily vitamin B complex, one with folate in not folic acid may be beneficial.

chriskresser.com/folate-vs-...

B vitamins best taken after breakfast

Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)

Or Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results

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

endocrinenews.endocrine.org...

[JOLLYDOLLY in reply to SlowDragon]

The vitamin D I take is : Adal - D3 equivalent to 600 mg calcuim and 10 mcg of vitamin D.

[SlowDragon Administrator in reply to JOLLYDOLLY]

That’s tiny dose vitamin D

Suggest you get vitamin D test

vitamindtest.org.uk