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(25 Posts)
cupofchai Sat 14-Oct-17 08:26:48

I feel like I'm hitting a brick wall with my GP and thyroid.

Any recommendations for private thyroid doctors? Experts?

Ideally Midlands but I would travel. Would a referral to ANY private endocrinologist help?

I'm not sure what the numbers mean but I've been over medicated (on levothyroxine) so I was starting to go in the opposite direction to under active but I think there are other problems.

genericname Sat 14-Oct-17 09:22:07

Hiya. My friend was seeing Dr Hurel privately and really rated him so I asked my gp for a referral to UCLH where he does nhs work. I now see him or a member of the endo team there and they have been very good.

EssentialHummus Sat 14-Oct-17 09:26:14

I’d recommend Dr Powrie, London Bridge Hospital (private) or St Thomas. Tbh, for me the turning point with my hypothyroidism was very frequent testing and data collection, so the Dr could assess things over time and with enough data, and always showing up to appointments with a current (done in the last two weeks) test so we weren’t playing catch up. The doctor I saw was of secondary importance to that.

cupofchai Sat 14-Oct-17 13:20:48

Thanks. Does anyone know anyone in the Midlands?

I have 2 sets of results 9 months apart.

I've had weight loss and exercising. I just need to someone get a grip on my bloods.

I will look into these doctors - not sure I can get a referral out of the Midlands to London? On the NHS

timeistight Sat 14-Oct-17 16:05:11

NHS endos who understand thyroid problems are thin on the ground in the Midlands. Are you sure you were over treated, or have you just been told you were? Do you have your results? Also, have things like B12, folate, iron and vitamin D checked?

cupofchai Sat 14-Oct-17 17:10:27

Yes my TSH was out of range.

Vit D fine as is B12
Iron could be higher but is in range. I'll track down the results and post the two sets from Dec 2016 and my recent ones

Nottheshrinkingcapgrandpa Sat 14-Oct-17 17:46:07

I'd second Dr Powrie- I saw him a few weeks ago and he was excellent.

cupofchai Sat 14-Oct-17 17:50:29

I don't have many of my old ones but as follows :

Dec 2016
Serum Free Triodothyronine Leval (XaEq?) 3.7 pmol/L [2.6-5.7 is range)

serum TSH. 0.51 mu/L range is 0.4-4.9

Sept 2017

Serum free T4 18.1 pmo/L range 9.0-19.0
Serum TSH LEVEL 0.34 mu/L
Vit D 86.8 nmol/L

Serum Ferritn level 47 ng/mL
B12 385 ng/L
Serum Folate 6.5

RedPanda25 Sat 14-Oct-17 19:57:14

Hi I don’t have recommendations for private endos but you could try asking on HealthUnlocked on the thyroid forum as they are very knowledgeable and will be able to help you. Good luck!

cupofchai Sat 14-Oct-17 20:04:28

Thank you!!

timeistight Sun 15-Oct-17 13:25:45

You’re not over-treated on those September 2017 results. You can’t be over treated unless both FT4 abd FT3 are above range.

FT4 is still in range, in fact looking v good. Shame there’s no FT3, but the earlier one was v low, so I’m wondering whether you actually have a conversion issue, possibly due to low ferritin.

Looksprettybad Sun 15-Oct-17 22:03:34

I agree you are not over treated. In fact, if ft3 is tested, you might find you are undertreated ! Many of us need suppressed tsh and high end ft4 to feel well.

cupofchai Sun 15-Oct-17 23:31:31

Thanks!! This is all sooo confusing.

I've logged onto health unlocked.
Someone did comment that I was probably ok on my last dose but deffo need b12 and Ferritin.

Dec 2016
Serum Free Triodothyronine 3.7 pmol/L [2.6-5.7]
Serum TSH Level 0.51 mu/L [0.4-4.9]
September 2017
Serum Ferritin Level 47 ng/mL [15.0- 204.0]
Serum free T4 level 18.1 pmol/L [9.0-19.0]
Serum TSH 0.34 [0.4-4.9]
Serum B12 & Folate 385 ng/L [187.0-883.0]
Serum Folate level 6.5 ug/L [3.1-20.5]
Total Vitamin D 86.8 nmol/L [>49.9]

Looksprettybad Mon 16-Oct-17 07:05:52

I think you need to know your ft3 to get a full picture. Your ferritin, b12 and folate are low and your vit d could do with raising a bit. It will be at a seasonal high right now but is still under 100 so a maintenance dose is needed.

cupofchai Mon 16-Oct-17 10:53:21

I’ve dropped from 175mcg to 150mcg - I’m due to be tested in about 6-7 weeks.

On that test it’s TSH and they have requested T3 (at my insistence).

I think I need to get them to request my vitamins again.

Looksprettybad Mon 16-Oct-17 12:41:39

Good to get your ft3 tested. Ive found that the lab won't test even if the gp asks ! My endocrinologist always tests it though.

cupofchai Mon 16-Oct-17 13:02:51

@Looksprettybad I need an endo on the NHS.

Yes my GP said that she can try requesting but they might not do it.

So annoying

Looksprettybad Mon 16-Oct-17 15:28:55

If they won't do it, you could try blue horizons finger prick blood tests. There's other companies too that do thyroid test by post!

WhyDidIEatThat Mon 16-Oct-17 15:49:18

Can you ask to be referred to a thyroid clinic at nearest hospital? When things are more or less okay my appointments alternate between consultant endo and thyroid nurse, the nurse is awesome actually. They test absolutely everything (tsi tpo etc) at the beginning and then whatever needs to be kept track of - for me that’s always included T3 and TRab as well as usual TFTs

cupofchai Mon 16-Oct-17 17:24:39

I didn’t know they had thyroid clinics in the UK and my GP feels my thyroid is managed.

She thinks I’m focusing in the wrong place and my heart palpitations, anxiety and hair loss is just some thing else a mix of genetics and daily life stress!

WhyDidIEatThat Mon 16-Oct-17 17:27:11

Well there’s definitely one in ipswich (in diabetes and endocrinology department) so I assume everywhere else has them!

Your symptoms sound so much like life with an overactive thyroid confused

cupofchai Mon 16-Oct-17 20:37:57

But my bloods don’t really show that do they? I’m so so confused. Exhausted too!

I’m cutting back on Levo from 175 to 150.

WhyDidIEatThat Mon 16-Oct-17 21:24:40

As someone with graves I’d be v symptomatic with those September results, my TSH needs to be around 2.5 to feel normal and T4 nowhere near so close to the top of the range (otherwise there is too much t3, I don’t know why) but it’s v individual and complex, and from what I’ve read on MN different once you’re dealing with replacement thyroxine when people feel better at those near hyperthyroid extremes.

WhyDidIEatThat Mon 16-Oct-17 21:25:54

So many other things can cause similar symptoms though, it’s really hard to know what’s what confused

cupofchai Tue 17-Oct-17 09:12:56

So hard to know!
I really do need to find a good endo and get a referral

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