Symptoms after starting NDT

[Ratkinson]

Hi, I am pan hypopituitary, so have to take all pituitary replacement hormones, including. Hydrocortisone and thyroxine. I have been on thyroxine 100mg for 20 years and did ok, but in the last couple of years I’ve struggled with hypothyroid symptoms. My T4 is at the top of the normal range and my T3 just below, hence why I’m trying NDT. Ferritin is 17.

Been on NDT 2 weeks now and built up to 1 1/2 grains. I’m really struggling though with sinus type headaches ( day 4 /5 of them, I’m really not sure if I need to increase more or even decrease. I do feel dreadful. I have just ordered blood testing kit, , but won’t get it till Mon , not quite sure what to do. I feel just like giving up and going back to levo. Any help greatly appreciated , thanks.

Forgot to say I have been having hot flashes , but my temperature is down at 36 .3.

[siddooo1]

Hi

It may be the case that you have increased your dose too quickly. I would drop back by 1/2 grain for a week to see if the headaches disappear. Then increase dose by 1/4 grain every 7 to 10 days. The general idea is to keep increasing until you get to 2 grains, hold that dose for 6 to 8 weeks and then test. If you haven't used any T3 medication before it can be a shock to the system. For any Thyroid medication to work well Vit D, Vit B12, Ferritin and Folate levels need to be in a good place. Your Ferritin result is dire, perhaps ask you GP to do a Iron panel and also test the others, so, you can supplement if needed.

Hope this helps

[Ratkinson in reply to siddooo1]

Thanks, yes I’ve had a full iron panel done, my GP didn’t see a low ferritin as an issue as everything else was fine iron wise, but I have taken it on myself to take iron tablets , so I’m on 200mg of ferrous sulphate daily. The GP is aware!All my other vits were fine. I’ll drop back the NDT - thanks

[SeasideSusie Remembering]

Ratkinson

Ferritin is 17.

Please speak to your GP about this ASAP. This is classed as iron deficiency:

From: cks.nice.org.uk/topics/anae...

In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency.

You need an iron panel to confirm iron deficiency and a full blood count to see if you have anaemia. You need prescribed treatment for this along with regular monitoring of levels. No thyroid hormone can work well with such a low ferritin level. Some experts say that the optimal level for thyroid function is 90-110ug/L.

[Ratkinson in reply to SeasideSusie]

Thanks Susie, my GP and my endo both didn’t see my low ferritin as a problem as it was within the normal range and I wasn’t low on other levels . But because I have read up on it here I have managed to get it up slowly ( from 8) with the daily iron tablets. My endo actually suggested I reduce my levothyroxine as it was above the normal range, despite my T3 being too low. I asked about adding in T3 but he was unable to prescribe. Hence I have gone privately to another endo who prescribes NDT . I don’t see him again till Oct. I wonder if I should have just bought T3 and added that in to a reduced levothyroxine. Bit late now though!!>

[SeasideSusie Remembering in reply to Ratkinson]

Your ferritin level may be within the normal range (which is extremely wide) but it will be at the low end, possibly only just into the range which usually starts at 13 or 15, and NICE considers it to be iron deficiency regardless of what your doctors think.

What "other levels" were tested? Did you have an iron panel which included Serum Iron, Total Iron Binding Capacity and Transferrin Saturation? Did you have a full blood count?

How long has it taken to get from 8 to 17?

If you are taking iron tablets, self supplemented, who is keeping an eye on your iron panel levels? If you already have a decent serum iron level and you take iron tablets it will likely push your serum iron too high.

[SlowDragon Administrator]

Presumably this is under care of endocrinologist

It’s important to monitor adrenal hormones carefully when changing thyroid levels

Essential to regularly retest vitamin D, folate and B12 too

Your endocrinologist could/should consider adding small doses of T3 prescribed alongside levothyroxine if conversion of Ft4 to Ft3 is poor

But before considering adding T3 all four vitamins MUST be optimal

Low vitamin levels suggests under medicated

Can see from previous posts low ferritin is long standing issue

What’s your diet like, are you vegetarian or vegan

How much do you weigh in kilo approx

Guidelines on dose levothyroxine by weight is 1.6mcg per kilo of your weight

[Ratkinson in reply to SlowDragon]

Yes I’m going privately to an endo who is aware of my history. He only prescribes NDT. The theory for my low ferritin is the breakthrough bleeding I was getting on my HRT, that does seem to have stopped this last month so hopefully my levels will go up faster.

I weigh about 70 kg, meat eater with what I’d call a healthy diet. Thanks

[SlowDragon Administrator in reply to Ratkinson]

So you might have need slightly under medicated

70kg x 1.6 = 112mcg levothyroxine

Were vitamin D, folate and B12 at good levels

[Ratkinson in reply to SlowDragon]

Yes they were all bang in the middle of the normal range last time they were tested.

[SlowDragon Administrator in reply to Ratkinson]

We don’t want “normal” we want optimal vitamins on levothyroxine

Vitamin D at least around 80nmol and around 100nmol maybe better

Serum B12 at least over 500

Active B12 at least over 70

Folate and ferritin at least half way through range

[Ratkinson in reply to SlowDragon]

So I’ve not had an active B12, but these are my other results that I assume are ok ?

Result table

[SlowDragon Administrator in reply to Ratkinson]

So yes they are ok

Do you supplement to maintain these levels, or are they naturally that good

[Ratkinson in reply to SlowDragon]

I take a multivitamin that’s all - should I have active B12 checked?

[SlowDragon Administrator in reply to Ratkinson]

No it’s fine

NHS only tests serum B12

Some private testing companies, eg Medichecks test Active B12

[Anthea55]

Hi there, which NDT are you using? They are not all the same. Some are better than others and some disagree with some of us.

[Ratkinson in reply to Anthea55]

It’s Efra, the Canadian one.

[Anthea55]

There's not much choice at present. I found Erfa worked pretty well but it doesn't agree with everyone. You might find it useful to search HealthUnlocked for 'Erfa' - box top right on my screen. Note - usual spelling is Erfa, not Efra although my surgery before I moved away always put it down as Efra.