Wondering if I ought to reduce Levo?: Results... - Thyroid UK

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Wondering if I ought to reduce Levo?

VickyWhitlock profile image
26 Replies

Results:

30/12 T4 12 / TSH 5.7 - inc to 75mg Levo

19/2 T4 15 / TSH 1.7 - inc to 100 mg Levo

18/3 T4 16 / TSH 1.7 - stayed at 100mg Levo

26/5 T4 19 /TSH 0.3 - recommended to stay at 100mg.

What do people think? I thought maybe I should drop back? Doc refuses to test for folate etc again as I am in normal range, although I am at the low end for ferritin (11), b12 (262) and folate (6.1).

Any ideas from you lovely people out there? X

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VickyWhitlock profile image
VickyWhitlock
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26 Replies
NatChap profile image
NatChap

Your B12 is way too low too x

VickyWhitlock profile image
VickyWhitlock in reply toNatChap

Hmm, someone else (Clutter) commented on that a while back. But my doc says the only way to get b12 is injection and she won't give it because I'm in normal range. Any ideas? :) thanks!

Lilylampshade profile image
Lilylampshade in reply toVickyWhitlock

I've used a liquid form of B12 from Biocare that you put under your tongue (avoiding intestinal absorption problems) and it's worked well for me

NatChap profile image
NatChap

I use sublingual methylcobalamin and it's working for me x

NatChap profile image
NatChap

Are you supplementing iron to get your ferritin up?

VickyWhitlock profile image
VickyWhitlock in reply toNatChap

No not yet - I'm off to a local nutrition shop this morning armed with a list, hence consulting everyone this morning! It seems I need ferritin, Vit C, B12 and a b complex?!

NatChap profile image
NatChap in reply toVickyWhitlock

Make sure you don't get ripped off though, it's sometimes cheaper to buy online. Make sure you look for B12 Methylcobalamin not Cyancobalamin too x

SeasideSusie profile image
SeasideSusieRemembering

If the nutrition shop is the high street chain that has those penny sales, can I suggest you don't bother, get better quality ones online.

For Vit C the L-ascorbic acid type is better than the D-ascorbic type although most brands don't state which. Nutribiotics do the L-ascorbic acid as a powder.

B12 - Solgar or Jarrows sublingual methylcobalamin 5000mcg as your level is low.

B Complex - Thorne Basic B is a good one, contains the active forms of the vitamins and uses folate (natural) rather than folic acid (synthetic).

You also need an iron supplement, for a gentle, non-constipating iron look for Albion Ferrochel Iron Bisglycinate as the form of iron. Solgar does Gentle Iron, there's also Blue Bonnet, Now, Source Naturals, Thorne, Swanson.

Remember to start them one at a time, give it a week or so before introducing another. That way if there's any adverse reactions you will know which one caused it.

As for whether you should reduce your Levo, what are the ranges and how do you feel?

If the ranges are similar to mine then TSH is at the bottom being 0.3 but not under range, and 19 for FT4 is near the top but in range, so with my ranges there would be no need to reduce your dose. Where are they in your ranges?

helvella profile image
helvellaAdministrator in reply toSeasideSusie

Feel free to mention Holland and Barrett by name.

The company that doubles their prices then makes a two-for-one offer (plus a penny) that they then claim makes their products cheap(-er).

VickyWhitlock profile image
VickyWhitlock in reply toSeasideSusie

Not sure what my 'ranges' are as such - this has all come up in the last six months so all the results I have are these :)

SeasideSusie profile image
SeasideSusieRemembering in reply toVickyWhitlock

OK VickyWhitlock The best thing to do is ask your surgery for a print out of all your thyroid tests, as it's only been six months it won't be a problem for them. Don't let them fob you off, you are entitled to them under the Data Protection Act. The print out will have the actual result and the range (possibly in brackets). You may be charged a small fee for printing but not all surgeries do that. If you are asked why you want them, you don't have to give a reason but you could say something like you are keeping a note of everything to do with your thyroid at home if you feel you need to give them an answer.

Once you've got your results you can see where you are in the range. With a treated hypothyroid patient the aim is for the TSH to be 1 or below and the FT4 and FT3 to be in the upper third/upper quarter of their ranges. Also for your symptoms to abate.

A good idea is to make a chart of your results showing date, tests done, results, ranges, dose of medication and how you feel. This will come in handy in the future if your GP wants to alter your dose but you don't feel it's necessary, eg your GP may want to reduce your dose but you feel perfectly well and your results are in range.

VickyWhitlock profile image
VickyWhitlock in reply toSeasideSusie

Thanks! I'll go and check it out :)

shaws profile image
shawsAdministrator in reply toVickyWhitlock

Adjusting doses of thyroid hormones upon the TSH result alone can lead to unpleasant symptoms.

The TSH varies throughout the 24 hours. Some of us need a suppressed TSH to feel well and it should be your clinical symptoms which should be used as a guidelines, i.e. how do you feel? well? not so well? Your pulse and temp also come into the equation.

Before the blood tests were introduced along with levo, the usual dose of NDT between 200mcg and 400mcg.

The aim of thyroid hormone replacement is the removal of all clinical symptoms and we feel well.

VickyWhitlock profile image
VickyWhitlock in reply toshaws

Thanks! I feel awful to be honest, but I've got a load of vitamins etc today so lets see if I can tweak things!

VickyWhitlock profile image
VickyWhitlock in reply toSeasideSusie

Ok, so it looks like I'm in the right place with my figures - sadly my symptoms are not being taken into account, only the figures on the print out!

greygoose profile image
greygoose in reply toVickyWhitlock

Yes, but you haven't got a result for the most important test : FT3. The levo you take - T4 - has to be converted into T3, but not everyone is very good at that. And, if your T3 is low, you will feel awful. This is another thing that doctors just do not understand. It isn't about the TSH, it isn't even really about the FT4. It's the FT3 that has to be optimal for you to feel well. And, yours obviously isn't. :(

VickyWhitlock profile image
VickyWhitlock in reply togreygoose

Hmm! Ok, so do I have to have private tests done for that do you know? :)

greygoose profile image
greygoose in reply toVickyWhitlock

Well, you could try asking your doctor to do it, but most people have to resort to private tests, because doctors/labs refuse to do it.

But you must have the two done together, or you cannot tell if you're converting or not.

VickyWhitlock profile image
VickyWhitlock in reply toSeasideSusie

Hi - the range on my paperwork is 9 - 19 T4 and 0.4 - 5 TSH, but I thought that was the same for everyone. In terms of my own range my only point of reference is my pre-goitre thyroid levels which are T4 12 and TSH 3.8... so I'm not sure what to do next! :)

greygoose profile image
greygoose in reply toVickyWhitlock

No, there are no universal ranges for the Frees. The range depends on the machine used to do the test. :)

Clutter profile image
Clutter

VickyWhitlock,

There is no need to reduce dose unless you feel over medicated. If you do reduce your Levothyroxine by 25mcg alternate days (12.5mcg daily).

___________________________________________________________________________________________

I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

SlowDragon profile image
SlowDragonAdministrator

Have you had vitamin D checked? This may be low too

Why are all these nutrients are low? (folate, ferratin and B12)

It suggests you have poor absorbtion of nutrients from your diet.

This could be due to low stomach acid, and/or gluten intolerance

Have you considered going 100% Gluten Free ? Worth trying

We need good levels of all these four in order to properly use Levo.

VickyWhitlock profile image
VickyWhitlock in reply toSlowDragon

Hi, the problem is my GP doesn't think these levels are a problem. I've been gluten free for three months now. But still feel so tired and am ill all the time. So I thought I'd get everyone's advice! :)

greygoose profile image
greygoose in reply toVickyWhitlock

Doctors know nothing about hormones or nutrients, so of course he thinks your levels are alright. That's why people come on here, to learn better. :)

SlowDragon profile image
SlowDragonAdministrator

Suggest you check vitamin D - £28 via city assay

thyroiduk.org.uk/tuk/testin...

Likely to need to improve all four, but it's definitely a good idea to only add one supplement at a time, and give it a few weeks. That way you know if is giving good (or bad) result.

If your vitamin D is low and adding vitamin D supplement, need to be aware that it can unmask low magnesium. Vitamin D is therefore often supplemented together with magnesium and vitamin K2.

Apparently there is little point testing magnesium by the standard serum test - it is pretty much always "in range" so inconclusive. There is more accurate RBC magnesium test, but not available on NHS. Many people are apparently deficient. The Magnesium Miracle is worth reading - though it is not aimed at thyroid patients

If supplementing vitamin D, you need to check blood levels periodically. (The body can not get rid of excess)

Lastly I have found Vitamin C with zinc helped.

VickyWhitlock profile image
VickyWhitlock in reply toSlowDragon

Thanks so much for all your help - I'll get this little lot underway and then look at Vit D - thanks!

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