Need a Plan?: Hello, I am brand spanking new to... - Thyroid UK

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Need a Plan?

dpmsurf profile image
12 Replies

Hello,

I am brand spanking new to the forum. I was just diagnosed with Hashimotos last week. I am trying to figure out my plan of attack. My dr said absolutely nothing. Said you have Hashimotos and take levothyroxine. I mentioned Natural desiccated thyroid and he said he does not prescribe that. So i really do not have a plan yet. I am going to go on a gluten free diet. Should I start taking Natural desiccated thyroid or wait and see if the gluten free helps? Any other suggestions please help? My symptoms are never sleep through the night (watch a whole lot of netflix). I am always exhausted and have lots of aches and pains. I am a 52 yr old male? I would rather take a more natural approach then the levothyroxine. My test results are

Anti-Thryroid preoxidase/tpo 166 IU/ml high

Thyroxine (t4) 5.3 mcg/dl Normal

Thyroxine (t4) free, Direct1.1 ngl/dl Normal

TSH 6.08

Any help/suggestions would be highly appreciated.

Thanks,

Dan

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12 Replies
Nanaedake profile image
Nanaedake

If in the UK anything other than Levothyroxine you would have to source yourself or go private. Levothyroxine is the standard treatment on NHS. As your TSH is only slightly raised it would be worth trying Levothyroxine first. The active ingredient of LT4 is indistinguishable from your own endogenous thyroid hormone T4. Filters (excipients) vary but so do they with dessicated thyroid.

If you live elsewhere than the UK you may have other options too. It would be nice if we could all try NDT.

dpmsurf profile image
dpmsurf in reply to Nanaedake

Thank you very much - Nana. I am in the US and do believe I can get the NDT but do not think Insurance will pay. I have read such negative things about the Levothyroxine that I am trying to start with NDT - if I can.

I guess My question is do you think I should start a NDT with the levels I have?

Thanks Again,

Dan

humanbean profile image
humanbean

The first thing to bear in mind is that many people actually do very well on Levothyroxine. From the point of view of doing things the easy way it would be worth your while to try levo and see how you get on.

The people who use this forum are mainly those who can't get a diagnosis at all or who don't get well on Levo, but there is lots of info on many thyroid problems.

If you want to help yourself, then I suggest

a) Going religiously gluten-free is essential. I am under the impression that the majority of people on this forum who try it gain some benefit from it. If going gluten-free doesn't help in any way, then you could always go back to eating gluten if you want - it doesn't have to be a life sentence.

b) Optimise your nutrient levels - the basic ones that are always mentioned are vitamin B12, folate, iron/ferritin/iron saturation, and vitamin D. These should be tested before supplementing. Be aware that going gluten-free may improve your absorption of nutrients quite dramatically and so results could change.

c) Other nutrients that you could measure if money is available are things like zinc, copper, selenium. Many people who are hypothyroid have high copper and low zinc, as well as low selenium.

d) Iodine and calcium are often included in multi-vitamins (which aren't worth taking by the way), but neither of these two things should be supplemented unless there is a proven deficiency. Levo and other thyroid meds contain iodine which the body can recycle. If calcium is only slightly low or low in range, and vitamin D is not optimal, then supplementing vitamin D may raise the body's absorption of calcium from the diet. Excess calcium will deposit in the arteries and soft tissues.

e) Poor gut health is a common effect of being hypothyroid. Working on improving it helps enormously.

Welcome to the forum. :)

dpmsurf profile image
dpmsurf in reply to humanbean

Hello Human,

Thanks a lot for all the information.

Dan

shaws profile image
shawsAdministrator

Welcome to our forum,

If you are in the UK the BTA have stopped the prescription of NDT even though it is the very original thyroid hormone replacement and peopole still prefer it to levothyroxine. Many of our members source their own NDT and get blood tests when they need them.

Your TSH is not too high and many doctors would wait till it was 10 before diagnosing/prescribing.

Going gluten free can help reduce your antibodies although they aren't too high. Antibodies attack the thyroid gland, sometime too much and sometimes less. An increase in antibodies can make you feel not too well.

When you give results you must also state the ranges. Ranges are important as labs differ and it makes it easier to comment.

Have you been prescribed levo or do you want to wait till you source NDT?

The starting dose of levo is 50mcg with blood tests every six weeks increment with a 25mcg until you are symptom-free.

With NDT you can start on 1/2 grain and increase by a 1/4 every week or two until you are symptom-free. You should take your pulse/temp before beginning and several times a day. If either goes too high you should drop to previous dose as you'd be on too much.

You should also get your B12, Vit D, iron, ferritin and folate tested. Everything has to be optimum.

Always get blood tests at the very earliest possible, fasting (you can drink water) and allow a gap of 24 hours between last dose of hormones and the test and take afterwards. This helps keeps the TSH at its highest as it lowers throughout the day and may make a difference and prevent the doctor adjusting dose unnecessarily so in order to keep the TSH 'somewhere' in range, when we need it 1 or lower and some need it suppressed.

dpmsurf profile image
dpmsurf in reply to shaws

Hello Sahmws,

Thanks for the reply.

When you give results you must also state the ranges. Ranges are important as labs differ and it makes it easier to comment. I have had 3 TSH tests firs tone was 9.6 then 5.5 then the latest 6.08

Have you been prescribed levo or do you want to wait till you source NDT? I can get levo if I want but I was planning on finding NDT and trying that.

Vit D = 46.8 ,

No tests for any of the others. I was hoping to ask the dr. To test the B12, Vit D, iron, ferritin and folate.

Any suggestion on what to concentrate on to get my sleeping better?

Any suggestions on what to do next? I'm stopping gluten now but that's pretty much it.

Thanks,

Dan

shaws profile image
shawsAdministrator in reply to dpmsurf

Dan you have given your results but not the ranges. Ranges are in brackets after the results: :) sample below.

TSH 3.87 (0.2 - 4.2)

FT4 10.3 (12 - 22)

The aim is to slowly work up to a dose. There's no quick fx unfortunately but some recover more quickly than others.

Members will provide you with NDT info.

dpmsurf profile image
dpmsurf in reply to shaws

Hello Shaws,

For ranges all it has is low - normal - high

For the ANTITHYROID PEROXIDASE AB and TSH it says high. The other 2 t4 tests say normal.

Thanks,

Dan

shaws profile image
shawsAdministrator in reply to dpmsurf

That's unusual and it doesn't give information i.e. how low or how high.

We don't pay attention to 'normal' o.k. or 'fine'.

We want everything to be 'optimal' which means towards the top, or in the case of TSH 1 or below.

SlowDragon profile image
SlowDragonAdministrator

As you are in USA vitamin D is measured in different units

endmemo.com/medical/unitcon...

46ng/ml (USA) = 114 nmol/L (UK)

This is a good level

dpmsurf profile image
dpmsurf in reply to SlowDragon

Hello Dragon,

Thanks for the reply - I am in the US and if anything should be good it'd be my vitamin D. I am an avid surfer and summer is just getting over.

Thanks,

Dan

SlowDragon profile image
SlowDragonAdministrator in reply to dpmsurf

I was wondering how it was so good.

Most hypos have terrible vitamin D levels.

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