My latest Endo letter and need research to dispute TSH only

[tzracer]

Hi, I've been around reading but not posting much.

Have been continuing with T4/T3 combination but still symptomatic.

Read ISTH book and have been slowly upping T3.

I had a last minute appointment come through to see Endocrinologist, they must have forgotten and left it 14 months not 12, which I was fine with as its a pain arguing with GP as Endo just wants to reduce dose because of TSH.

So he asks how I am, I say 'pretty much the same still very tired and still have hypo symptoms.

Endo - What are you taking now?

"150mcg T4 and 25mcg T3 (I had recently upped to 37.5mcg but knew it would make things worse)"

Endo - Looked puzzled, so your GP didn't lower your dose?

No I asked to stay on 150mcg as last time we dropped my TSH didn’t change but my symptoms got worse.

I think my GP was a bit embarrassed as they hadn’t acted on the Endos letter for 5 months and on the bottom in bold was that he wanted my dose reducing (that’s another story all together)

Endo – Pulls up his letter, my recommendation was based on 50mcg, whoever had typed his notes up had missed the ‘one’ off. So he was embarrassed, pulled up his note sure enough it was 150mcg.

He then credits my GP for knowing what to do.

I laughed inside OMG.

So after that he went on about how TSH should be in range and it wasn’t worth testing T3 because its only in blood for 6 hours.

I just counter everytime that a dose reduction increases my symptoms, I’m not over range in either T3/T4.

I said I wasn’t feeling better in relation to comments about being slightly over medicated.

He offered to do bloods, a asked about cortisol as he was looking for other causes for symptoms. He wanted to do calcium as I had been taking a lot more vit D than he was prescribing. So disappointing this has moved from 57 to 66 in 2 years.

Results:

TSH <0.01 mui/L (0.3-5)

T4 17.0 pmol/L (11-22)

T3 5.9 pmol/L (3.1-6.8)

Vitamin D 66

Cortisol 421 nmol/L (145-619) This was taken 09.30

Alk phos 75 u/L (30-130)

Adj Calcium 2.41 mmol/L (2.20-2.60)

Albumin 46 g/L (35-50)

Phosphate 0.87 mmol/L (0.80-1.50)

So to the bombshell of the appointment.

Endo – so do we prescribe your T3?

No, I buy it off the internet.

Endo – How much does it cost?

About $17 per bottle (I’m wondering where this is going),

Endo - Oh, that’s not right

Previous endo said he couldn’t prescribe it if he wanted to, and I said it costs NHS hundred of pounds. He looked at me blankly.

Endo - Before you run out speak to my secretary and we’ll give you a prescription.

I couldn’t quite believe it, was it because I’ve been taking my own and am still here and not over medicated. Was it to make up for the mistake, who knows?

I will add more thoughts, but I’ve already had the call from the GP to pick up new prescription.

Does anyone have a copy of the research paper that dismisses TSH as the best way for dosing and the arthritis issues.

I’m going to make an appointment with GP do discuss as we have done this experiment before, my T4 will drop TSH will do nothing because I’m taking T3 and my symptoms will worsen.

I’m loosing the will to fight any more.

I really only need the GP/Endo for blood tests as I cant afford private and GP very rarely gets the T3.

Sorry this was meant to be short.

Thanks to everyone on here who has helped me get this far.

[SlowDragon Administrator]

Looking through previous posts I couldn't see that you have ever posted any thyroid antibodies results

Presumably, as your Mum is hypo too, you have Hashimoto's?

Your vitamin D is still too low

How much vitamin D are you taking?

Are you using vitamin D mouth spray? Many of us with Hashimoto's find it's easier to absorb a mouth spray

Are you supplementing any magnesium?

This is co-factor and works with vitamin D

Links about Magnesium

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

What about B12, folate and ferritin?

These need testing annually as minimum. Ask GP to test these

Are you on strictly gluten free diet?

Helps thousands with Hashimoto's...and arthritis too

arthritis.org/living-with-a...

Brilliant to be getting T3 on NHS.

Three different brands available. They are not interchangeable.

Morningside Healthcare is blister packed. Comes in 5mcg, 10mcg and 20mcg tablets

20mcg tablets only

Mercury Pharma is often short shelf life and loose in pot.

Teva only one that's lactose free, but Teva often doesn't suit many people

[tzracer in reply to SlowDragon]

Thanks for the detailed reply, I'm pushed for time but will read through and answer questions when I can.

[Batty1 in reply to SlowDragon]

I'm shocked he got T3 script since so many ladies here go to endo/gp and seem to always get shot down.

[tzracer in reply to Batty1]

No more shocked than I was 😁 it was quite a bizarre moment.

[Batty1 in reply to tzracer]

Lucky you! Now everyone is going to want his name...lol

[tzracer in reply to SlowDragon]

Sorry finally got a bit of free time, I asked GP for Antibodies test but lab refused as I already had a hypo diagnosis.

I'm not sure I have Hashi flares as there haven't really been big spikes in results.

Not sure if my mum has had TPO tested will check.

Endo upped vitamin D from 800iu to 1600iu which I know is very little. I had been topping that up with 5000iu vit D and K2 mk7 when I could afford it, but saw little change.

I have some sublingual 4000iu Vit D to try.

I take Magnesium Chloride drops in my water bottle across the day.

I have been making Kefir to try and help gut micro biome

Will try again to get ferritin and Folate tested, not been done for a long time.

My B12 was >2000 when last tested but I had been self injecting to bypass any absorption issues, haven't injected since Aug 19 to see how much it may have dropped.

Not tried gluten free diet.

'Brilliant to be getting T3 on NHS'.

Yes, but there's a part of me that feels bad knowing it costs the NHS so much. If I could get tiromel at over the counter prices I would continue myself, I've gotten used to buying it and don't know if the Endo is doing it so he feels he has the control.

I know I can always go back to buying it if he restricts. I may ask for 5mcg tablets so I can try spreading out across the day.

[SlowDragon Administrator in reply to tzracer]

Finally managed to find out prices charged to NHS on different doses

Cost of Morningside Healthcare T3 to NHS

Per box of 28 tablets

20mcg - £163 - Per tablet £5.82

10mcg - £148 - Per tablet £5.28

5mcg - £90 - Per tablet £3.21

Price comparison of 20mcg per day

As 20mcg tablets

20mcg per 28 days £163

As 10mcg tablets

20mcg as 2 x 10mcg per 28 days £296

As 5mcg tablets

20mcg as 4 x 5mcg per 28 days £360

Or as mix of 10mcg plus 5mcg

1 x 10mcg and 2x 5mcg tablets per 28 days £328

25mcg per day

1 x 20mcg and 1 x 5mcg - £253

[tzracer in reply to SlowDragon]

Thanks, maybe not split dose then.

How do they figure those cost ratios, not about the active ingredient obviously, pricey incipients?

Guess it seems like they just make it up as they go along. Just doesn't shock anymore.

[SlowDragon Administrator in reply to tzracer]

Most people get 20mcg tablets and cut up with sharp craft scalpel into 1/4's

Morningside Healthcare only just launched 5mcg and 10mcg tablets

Sigma Pharma 5mcg is £120 for 90 tablets on private prescription.......but only available as "special prescription" on NHS and 3-4 times the cost of private prescription

[SlowDragon Administrator]

Teva is lactose free

See list here of brands and fillers

thyroiduk.org.uk/tuk/treatm...

[humanbean]

It is possible one of the papers written by diogenes and his team will say what you need. Hopefully, diogenes himself might suggest something but this link takes you to a list of their papers on the Thyroid UK site :

thyroiduk.org/tuk/research/...

And there is the research section, also in the Thyroid UK site :

thyroiduk.org/tuk/research/...

thyroiduk.org/tuk/research/...

Be aware that TSH in research papers is often referred to by a different name - thyrotropin.

Another source of info that might help is the Thyroid Patients Canada website. I would suggest looking at two sections of the site - "Testing Policy", and "TSH Test":

thyroidpatients.ca/category...

thyroidpatients.ca/category...

Sorry I can't be more specific, but I am not as familiar with the evidence as I should be.

[tzracer in reply to humanbean]

Thanks, will have a look through. Was considering contacting TUK as there is probably papers in the reports they submitted to NICE.

[SlowDragon Administrator]

Just because they are lactose free, doesn't necessarily mean they would suit you. So many people react badly to Teva.......guessing it's the mannitol used instead of lactose

[SlowDragon Administrator]

Unlicensed medication is often extremely expensive on "special prescription " as there's no price regulation

Sigma Pharma 5mcg x 90 tablets is much cheaper on private prescription than NHS is charged on special prescription

[tzracer]

Totally agree. The NHS guidelines have recently been re written and all the research and input from Thyroid UK not really factored in or just ignored, its going to be a terrible time for future sufferers.

GP's are struggling, labs regularly overide requests if TSH is in range, you may get T4 but little chance of T3.

Keeping people ill sadly, is the way the pharmaceutical giants want it.