Is this as good as it gets?

[ChaFaye]

I am new to this site and this is my first question. In 2008 I was diagnosed with hypothyroidism. The internist prescribed Levothyroxine for me, which I still use. I am female, early 40's and vegetarian for more than 30 years.

I am now using 175mg of Levothyroxine a day. I take this in the morning, on an empty stomach, 30 minutes before breakfast. She also prescribed Kalcipos D (800 vitamin D3 and 500 calcium) which I take daily. However, I do not feel that I am as well as I could be. I'm still often foggy brained (less than before though), feel lethargic and am tired most days. I have 2 children under the age of 5.

My last blood results (February 2013) are as follows:

TSH 0.96 (0.3-4.5)

FT4 16 (12-22)

FT3 4.7 (3.9-6.9)

PTH 4.5 (no range given)

Ferritine 43 (12-250)

Up until early December 2012 I was on 150 Levothyroxine, but I went to see the internist about persistent pain in my hands. She felt there was no connection with the pain in my hands and hypothyroidism, but since I was there anyway I asked if I could increase my dose slightly to see if it might help with weight loss. Although I'm not overweight, I could do with losing some kilo's gained after my last pregnancy 2 years ago. She is an internist that believes that weight issues are not linked to the thyroid condition, but rather to food intake and (lack of) exercise. I eat healthfully and exercise moderately. However, she agreed to an increase (which became 175), with the above blood results in February as outcome.

My blood results in December 2012 (on 150 Levothyroxine):

TSH 1.8 (0.3-4.5)

FT4 17.5 (12-22)

FT3 4.5 (3.9-6.9)

Ferritine 51(12-250)

Additional blood results June 2012:

Vitamin B-12 469 pmol/L

Vitamin D 25 84 (25-150)

I noticed that my Ferritine in Feb 2013 had gone down since Dec 2012, so I have started taking Ferrous Fumarate 200 again, every second day, which the internist had also prescribed to me a while back, (which I still had, but last year she said I didn't need to take them anymore). Since about 4 weeks I have also started taking over the counter B-12 (methylcobalamine) 1000mcg, Magnesium Citrate 200mg and Selenium 200 mcg daily. I take these at night after my meal, together with the Kalcipos D. None of this I have discussed with the internist.

Since about 3 weeks I have started making shakes with 'Raw Super Foods': I make a daily smoothie mix using spirulina powder, maca root, barley grass, cacao nibs, Goyi berries, chia seeds and hemp seeds (industrial hemp, not marijuana!) with some oat milk and a banana in the hope that this might give me more energy.

I live in The Netherlands and it is only since I started reading this site that I became aware of taking T3 as a supplement. My internist has never discussed this with me, but possibly also because I never asked her! The internist was pleased with my blood results in February 2013 and only wants to see me in a year's time again.

My question is: Is there anything else that I could be doing, should be doing to get the va va boom back in my life? Perhaps increasing the Levothyroxine (perhaps take 175 and 187.5 on alternate days). Should I consider taking the Levothyroxine at night? Is there something that I may have missed, or is this as good as it gets?

Thank you to every one who has taken the time to read my long question and possibly mull over any suggestions!

[PinkNinja]

You have scope to increase your levothyroxine. You should be aiming for your T4 at the top of the range and T3 in the upper half of the range. Your TSH will likely have to be below range but this is ok provided your T3 is within range. TSH means very little if you have hypothyroidism. There was a recent research paper showing this. TSH works fine for euthyroid and hyperthyroid patients but not for hypothyroid patients due the feedback mechanism being broken.

Getting your ferritin up will also hopefully help

Carolyn x

[ChaFaye in reply to PinkNinja]

Hi Carolyn

Thanks for your super speedy response! If there is scope to increase the Levothyroxine, do you think I should increase to 187.5 per day (an increase of 12,5) every day, or perhaps alternate days? I was hoping to do this increase by myself, i.e. without involving the internist yet and only going to have my blood tested once I'd given it some time to see how I adjust and feel on 187,5 Levothyroxine.

[PinkNinja in reply to ChaFaye]

I'm not a doctor but it could be worth a try. It's only a small increase so it shouldn't cause any problems. I hope it works

[helvella]

Trying bed-time dosing seems a reasonable (and reversible) idea.

Some people (but not all) seem to feel that changing to bed-time has an impact similar to a small dose increase. Perhaps change dosing time, see how you feel, re-test, and then - if your numbers do not change - get a small increase. You clearly could be taking a bit more without being likely to overshoot - but I concur with small changes.

I do agree, though, that people should always remember that T3 is a possibility and it is not unknown for a small amount to make all the difference. I suspect that the NL health system doesn't have much more tendency to prescribe it than UK!

While typing - what is the situation regarding desiccated thyroid over there? I seem to remember that a Danish make was available:

DENMARK’S THYREOïDUM for NETHERLANDS from Biofac in Kastrup, Denmark. Imported into the Netherlands from BUFA/Fargo, importers of pharmaceutical products.

Rod

[ChaFaye in reply to helvella]

Hi Rod

I have 4 family members (all on my mom's side) who are all hypothyroid, and all have been prescribed Levothyroxine. So I do not have any first hand experience with desiccated thyroid. I found a site run by people who use desiccated thyroid and advocate the use of it, where they mention that Thyreoidum, Armour thyroid (made by a local company called Mierlo Hout) as well as the American Armour Thyroid and the Canadian Thyroid Erfa are all available here. However, the treatment protocol for Hypothyroidism states that patients should be offered T4, since a combination of T3 and T4 has no added benefits above only offering T4. There does seem to be some room for discussing the combination treatment (at least it says so in the protocol) with your GP or internist, but they need to substantiate their choice and add this to the patient's file as well as having pointed out the risk involved taking this medicine and that this medicine is not checked in the same way by the Dutch authorities as they do other medicines. Scare tactics?

All this can be found here (in Dutch though) vgns.nl

And then I have a practical question regarding changing from taking my Thyrax in the morning to taking it at night. Say I wanted to start taking it tomorrow night, do I take my usual morning dose, or do I halve it in the morning and take the other half at night and then the second evening I start taking the full dose? How does that work?

Thank you for your feedback!

[helvella in reply to ChaFaye]

Thanks for the link - I'll have a go at that using Google translate.

People have done all sorts of things in changing to bed-time. If you are definitely not over-dosed (this would, I think, be OK for you) I would consider taking half a dose in the morning and full dose at bed-time. Or vice versa.

Remember, it is only a minor perturbation of your usual levels. So unlikely to have a huge impact whatever you do.

(Mind, I should be the very last person you'd ask. I have always taken it at bed-time!)

Rod

[helvella in reply to ChaFaye]

Quite readable using this link:

translate.google.co.uk/tran...

Or

tinyurl.com/bojxdpb

Might not work in all browsers - have only tried Chrome.

[Jackie]

Hi I would say that you would definitely benefit from some T3, may be just 20mcg, the starting dose. it would lower your TSH a bit, but yours could take it. PTH looks Ok but the only "correct" test is a blood test for calcium vit D and PTH all done together AM.If all high or D high for you and others high Then you will need a nuclear scan of the PTH and an ultra sound of thyroid. Unlikely needed with your PTH. result. Magnesium should only be taken if low magnesium after a blood test and with weekly bloods under medical supervision.( I have to take it ). It is an electrolyte with a very small range and must always be in range. Taken in food ,it is fine.

I would push for treatment with T3 , failing that NDT such as armour might be better for you.

Best wishes,

Jackie

[Redditch in reply to Jackie]

ooh magnesium should only be taken after a blood test and with weekly bloods under medical supervision? I was advised to take it to combat short-temperedness (not by a doctor but by a fellow sufferer) which I had never suffered with until I was diagnosed.. I've been taking it for a few months and have really found it helpful.... Managed to keep my cool much better with it. It's a commercially available supplement with B complex from Wassen.. should I worry that I am sending myself out of range?

[Jackie in reply to Redditch]

Hi Well it is an electrolyte ,so effects other electrolytes and the heart and kidneys. Especially Potassium. It also has a very tiny range. However, very little is absorbed from over the counter minerals, I have mine on a script as used for kidney transplants. Even then , I have to take lots and the best way is when in hospital in a drip. However the blood test is good, better than thought as having mine done weekly I can tell how it is.A lot of people do take it and find it helps. Personally in a different situation, I would just take it in food. it is in a lot of food and that is totally safe. Otherwise, if it was me, I would at least have one magnesium test, specific but not expensive. My GP does mine It does alter very quickly..I really would not consider it except under medical supervision, if any risk factors for heart or kidney disease. I hope that helps you to make up your own mind.

Jackie

[ChaFaye in reply to Jackie]

Hi Jackie

Thank you for mentioning the small range for magnesium. I need to reconsider if I should continue taking it. However, the dose is 200mg and the package insert says that that amounts to 53% of the RDD.

[sporty333]

You know, I have gone back to eating meat after 14 years of non meat eating. I relented to my private doctors wishes to eat meat again. I have to admit, I think it suits me now. I feel the need for it and it quite possibly made me strong when I started.

Just a thought :0) x

[Redditch]

Another thought is that the supplements of d and selenium and magnesium may be better taken midday if you can.. is your sleep disrupted or are you sleeping OK?

[ChaFaye in reply to Redditch]

Hi Redditch

Now that you mention it, although I do manage to sleep through the night ok, I have noticed that I fall asleep later than usual. And that means that I am tired in the morning when the alarm goes at 06:30. So perhaps it is best to take vitamins during the day.

[Maddie]

Best to take iron at least two to three hours apart from thyroid hormone. Iron can interfere with thyroid hormone absorption if taken too close together.

Be careful about taking calcium (Kalcipos) at the same time as thyroid hormone. Allow at least 4 hours apart, so absorption is not affected. You can check this with your pharmacy - Maddie