Should I ask Dr for an increase in Armour or test Adrenals first?

[Hellsy]

I came off T4 3 weeks and 5 days ago. An Endo I am seeing via health insurance (very reluctantly) put me on a start dose of half a grain (I had been on 50mg/75mg alternate days of T4). Initially had great reaction, but as it faded I emailed him to ask for an increase of half a grain (8 days after starting on Armour). He agree to quarter of a grain increase only. Again, I felt the benefit but that wore off within a week. I knew I needed to keep raising the dose in the early weeks up to around 2 - 3 grains. I saw him yesterday and despite my symptoms returning and a TSH of 4.4 he would only increase my dose by a quarter, to one grain daily.

I am actually feeling a little hyper, despite being cold. My energy levels seem more erratic within a given day than they have in the past. I initially lost 4lb but am feeling that weight loss is now going back on again.

So, in effect nearly 4 weeks after starting I am still only on the usual starting dose of one grain. He has asked to see me in 4 weeks! I asked for sooner, explaining why but he refused.

He is not at all open to my input!

I have a great relationship with my GP so am probably going to ask if he will take over monitoring my Armour so that I no longer need to see the Endo. However, I strongly suspect I have adrenal issues as I have symptoms of aldesterone insufficiency. I have a saliva kit and am going to do it tomorrow and post on Tuesday. I am wondering whether to address any adrenal issues first before asking my GP for more Armour?

Does anyone have any advice on the best course of action? I don't want to delay getting my thyroid correctly treated but don't want to push for more Armour if I need to address the adrenal issue first.

Very much appreciate any input. Just wondering if Paul Robinson could advise?

Thanks!

[shaws Administrator]

Maybe the Endo is being cautious with Armour and he doesn't have many patients on it either and is being over-cautious.

You're obviously not on sufficient Armour if your TSH is 4.4 and normally the starting dose is 1 grain,

Your instinct is right - your dose is too low and this is an excerpt:

STICKING WITH TOO LOW A DOSE. For a myriad of reasons, this happens often for those on NDT or even T3-only and will make you feel even more hypo due to feedback loop suppression. Have one of these been true of you?

a) being held on a starting dose longer than two weeks (such as one grain, 1 1/2 grains or less)

b) being bound by the directives of a TSH-obsessed doctor. The TSH lab test only keeps you sick.

c) failing to get a raise of desiccated thyroid until the “next labwork”, which can be weeks and months away

d) following an inaccurate Synthroid-to-Armour type conversion equivalence chart.

e) being afraid to go higher!

This will probably catch your eye:

a) being held on a starting dose longer than two weeks (such as one grain, 1 1/2 grains or less)

b) being bound by the directives of a TSH-obsessed doctor. The TSH lab test only keeps you sick.

c) failing to get a raise of desiccated thyroid until the “next labwork”, which can be weeks and months away.

So as far as I can see 1 grain is a starting dose. You might have to take things into your own hands to improve your health.

stopthethyroidmadness.com/m...

[Hellsy in reply to shaws]

Thanks very much for your reply. I have actually copied and pasted the info above from STTM to take to my GP this morning I was hoping for a little reassurance that I need more Armour and you have just given that to me so thank you The GP has a drop-in this morning so I'm going to go now and ask for an increase to one and a half grains.

[waveylines]

Good luck at your GPs this morning!

Sounds like two things have gone off. One you were probably underprescribed on the levothyroxine at 50/75mcg as these are really stater doses too. Secondly the endo transfers you across to a starter dose on Armour. So you've effectively trodden water as far as therapeutic dosage is concerned. Clearly with TSH of 4.4 you need a programme of graded increases. The truth is he is probably nervous about the T3 content & as Shaws says is being overly cautious.

So yes you need an increase that goes beyond starter dose. I know when I transferred across I went up quite fast incrementally at first BUT I had been on a much much higher dose then you of levothyroxine but still started lower on the NDT.

If you can't get your GP to increase (& she/he may feel their hands are tied) then I would badger the Endo with a further phone call.

[Hellsy in reply to waveylines]

Thanks waveylines. I think you are spot on. Before commencing Armour my last test was TSH 4.7 (I was only on 50mg at this point). My GP had increased me to 75mg/50mg every other day which I took for a few weeks but then switched over to Armour. So my new level of 4.4 means I have been treading water as you say. I've been on Levo for 5 years and my GP has supported me increasing and decreasing (I tried to come off it for a while) over the years. I did partially recover with Levo but after reading 'Recovering with T3' by Paul Robinson I realised there were other options.

TBH I don't think he was nervous. He had initially VERY reluctantly supplied NDT and in truth, he clearly isn't behind it at all. He mentioned a few times 'run ins' he had in the past with Dr Skinner and his 'associates' (said very disparagingly and using his hands for the parenthesis). He's very pro synthetic thyroid. I'm convinced he's keeping me on a low dose for too long so that he can be proved right that it doesn't work. In my last appointment he was steering towards NDT not working (even though he refused to up the dose beyond quarter of a grain) and said come back in 4 weeks and we can always try other things like combo T3/T4. I saw him privately via insurance and to me it's scandalous that he charges £250 for an appointment and won't listen to, or work with me.

The GP this morning after a long discussion agreed to increase my dose to one and a half grains. Yay! He was a locum and was at first suggesting to speak with the Endo and for the Endo to ring me but I said there's no point because he won't listen. I was so happy and relieved to be listened to. I must admit he was such a good listener I told him all about the problems patients have with thyroid medication and got emotional when he said he would increase my medication! Poor fella...I apologised for laying all my stuff on him

Thanks again, your responses were really helpful this morning before I went in to the appointment.

[waveylines]

Well done Hellsy!!! That's great news! I like the sound of this locum!!

Hope the increase helps.

When I was increasing my thyroid meds my private doc sent my GP a schedule of increases so that the the thyroid meds could be increased a number of times before going back to see the specialist. I wonder why he hasn't done this? I will admit it wasn't a ndt as i had to fight to get that on the NHS -another whole story!!!

Sorry to hear that the endo is already talking about looking at synthetic thyroid meds next time -does seem odd! I agree he hasn't given you a chance to get up to a reasonable dose to see if it works. If it is a strategy of his and not plain ignorance then you might want to consider moving endos to a friendly ndt one. Louise Warvil has a list of docs that others have recommended. I would pm her for the list....

[Hellsy in reply to waveylines]

Thank you waveylines

I'll hopefully have my medication supervised by my GP from now on. He's really great and open to patients view of their own health. Thanks for the heads up about the list of GP's, I'll message Louise as I may still need to see an Endo. I did get a list of recommended Dr's from Sheila at Patient Thyroid Advocacy UK but it didn't include any in Sheffield, or anywhere near here.

I took the extra half a grain last night and feel great today. I'm taking half a grain every 8 hours (7am 3pm and 11pm) to see how that goes. I was worried it might affect my sleep but it didn't, in fact I slept well. I'm hoping to get 24 hour benefit of T3 at a cellular level and my logic is that nightime is when our body repairs so it should be beneficial to take NDT at night too (particularly to get T3 into the gut at nightime to possibly aid metabolism and weight loss). Since being on NDT I have lost the slight puffy face I had I've also lost 4lbs which is incredibly encouraging as I've been very health conscious (I am intollerant to gluten, soy, eggs and dairy) but have not been able to lose a lb, let alone 4! I've been stuck at the exact same weight or increased, apart from when I moved Levo to taking bed time and lost 6-7lb in 6 weeks.

See this article in the Telegraph to see why My Endo is being derogatory about Dr Skinner (he passed away in 2013). There are 2 camps in the Thyroid world it seems, the medical camp (only Levo works and if TSH is 'normal' then you have another issue and the enlightened camp of Dr's and Alternative Practitioners who have discovered the truth!

telegraph.co.uk/news/health...