Hi: New here I am taking 50mcg levo and diagnosed... - Thyroid UK

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SianT1 profile image
35 Replies

New here I am taking 50mcg levo and diagnosed hypothyroid in 2012. When will I feel better on this dose please thanks

(200mcg levo and 20mcg t3)

TSH <0.02 (0.2 - 4.2)

Free T4 30.5 (12 - 22)

Free T3 11.6 (3.1 - 6.8)

TPO antibody 275.3 (<34)

TG antibody >1500 (<115)

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SianT1 profile image
SianT1
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SeasideSusie profile image
SeasideSusieRemembering

We need more information please SianT1

Have you been taking only 50mcg since diagnosis, or have you had different doses. If so, why were they changed and please post the results from when they were.

Have you ever felt well since starting levo?

What are your current thyroid test results - TSH, FT4, FT3. Please include reference ranges for interpretation.

Have you had thyroid antibodies tested? Were they high - Hashimoto's.

Have you had vitamins and minerals tested - Vit D, B12, Folate, Ferritin, and maybe iron panel, full blood count? Please post any test results you have.

SianT1 profile image
SianT1 in reply toSeasideSusie

I have had different doses and they were changed because of TSH being over range or under range. Latest results were over treated ones and it was reduced by GP and then I reduced it further myself. I was well when I was taking levo and t3 together. I also tested positive for hashimotos and will post other results now thanks

SianT1 profile image
SianT1 in reply toSeasideSusie

Results now added

Nanaedake profile image
Nanaedake

Hi Sian, could you post your latest blood test results on here along with the laboratory ranges? Then we might be able to help. 50mcg is quite a small dose and if you've been on that dose since 2012 there is a chance you need more meds but without seeing your blood test results nobody can tell. Everyone here is really helpful, we all help each other so you'll get lots of good suggestions.

SianT1 profile image
SianT1 in reply toNanaedake

Done

shaws profile image
shawsAdministrator

Welcome to our forum and I am sorry you are hypothyroid.

Before we can respond to your question you have to provide us with your latest blood test results with the ranges. Ranges are important to comment.

Doctors are poorly trained, they adjust hormones up/down according to the TSH not realising that if they took a test at 8 am. it will be completely different at 8 p.m.

I don't know why they have put you down to a starter dose of 50mcg.

If you put your thyroid history into your profile, it helps when responding. i.e. when were you diagnosed, the hormone replacements you've been taking etc.

Blood tests always have to be at the very earliest possible, fasting (you can drink water) and allow a gap of 24 hours from your last dose of levo and the test and take afterwards.

This helps keep the TSH at its highest as that's all they know about.

You need a TSH, T4, T3, Free T4, Free T3, and thyroid antibodies. If he doesn't do (or lab doesn't) you can get the ones not done by private blood tests. We have private labs.

Your GP should definiitely do B12, Vit D,iron, ferritin and folate. Deficiences also cause symptoms.

SianT1 profile image
SianT1 in reply toshaws

TSH <0.02 (0.2 - 4.2)

Free T4 30.5 (12 - 22)

Free T3 11.6 (3.1 - 6.8)

TPO antibody 275.3 (<34)

TG antibody >1500 (<115)

shaws profile image
shawsAdministrator in reply toSianT1

SeasideSusie and Nanaedake will respond to these.

Diddums profile image
Diddums in reply toshaws

Message for Rusty as am new to site and cant find her......have had bloods tested with Blue horizon and readings are:

BTW TSH was 5.8 and before that 7.4 when was eventually prescribed 50mcg of Levothyroxine.........and saw an endocrinilogist

ENDOCRINOLOGY

THYROID PROFILE 3

THYROID STIMULATING HORMONE * 4.27 mIU/L 0.27 - 4.2

FREE THYROXINE 17.6 pmol/l 12.0 - 22.0

FREE T3 3.3 pmol/L 3.1 - 6.8

Have an NHS Blood test booked on 20th of Sept

This Doctors comments says :

The Thyroid Stimulating Hormone (TSH) is slightly elevated. If you are already taking a form of thyroxine, it is possible that that your dose is too low or that you have forgotten to take it on occasion. It may be that an increase in dose is in order - if adjusted it would be sensible to repeat thyroid function (TFT) testing in around 2 months’ time. If you are not taking thyroxine, and this is the first time TSH has been noted to be high, it is possible that 'non-thyroidal illness' or other medication effects are the cause of the elevation. It may be that hypothyroidism (underactive thyroid gland) is about to develop. In these scenarios, it would be advisable to repeat thyroid function tests in 3 months’ time. I would suggest undertaking this repeat test sooner if symptoms develop.

Fasting blood test and never forgot to take throxine......still feel awful,(only slightly better) what should I do next?

Thank you.

@Rusty64

ITYFIALMCTT profile image
ITYFIALMCTT in reply toDiddums

This is a little buried down here and might not be seen readily - could you pop it into a separate post so that more people might see it and comment? Include a link back to your original post so that people can see your earlier results and mention your dosages.

Diddums profile image
Diddums in reply toITYFIALMCTT

Thanks for tip hope I have done it now!

Nanaedake profile image
Nanaedake in reply toSianT1

How long have you been on 50mcg levo? Were these the blood test results that prompted lowering the levothyroxine dose?

The blood tests above indicate a little overmedicated but dropping down to 50mcg all at once is a big reduction and incrementally smaller doses retesting every 6 weeks would have been better. You need to retest 6 weeks after dose change and then adjust.

As you have thyroid antibodies, your blood test results will vary anyway, nothing to do with the dose of meds and all to do with the activity of thyroid antibodies.

When your antibodies are active they attack the thyroid and your thyroid releases a lot of hormone which lowers your TSH level. Then when it settles down you become hypothyroid again and perhaps a little more so than before. This means you might need to lower your dose a little when you have a 'Hashi flare' and then retest and increase your dose again.

SianT1 profile image
SianT1 in reply toNanaedake

I have been on 50mcg levo for a week and gp initially asked me to reduce to 175mcg from 200mcg and then from 175mcg to 150mcg. I was afraid of having over medicated results still so I went back to 50mcg at my own accord

SeasideSusie profile image
SeasideSusieRemembering in reply toSianT1

I think, as you weren't having any hyper symptoms, you should have followed your GP's advice and reduced gradually.

SianT1 profile image
SianT1 in reply toSeasideSusie

Hi he thought I was overtreated too

Nanaedake profile image
Nanaedake in reply toSianT1

Ok, I just re-read your post above and saw you had adjusted the dose further. How are you feeling now? Maybe it's a little bit frightening to think you are overdosed but it's better not to make big changes all at once because your body has to adjust. If you've only been on 50mcg for a week I think you could take it back up to 150mcg with no trouble and then retest in 6 weeks and adjust again if you need to.

Do get your vitamin levels checked as shaws has said because we are often deficient in these.

SianT1 profile image
SianT1 in reply toNanaedake

Hi I am not feeling very well at all and I have had vitamin and minerals checked 2 months ago thanks

Nanaedake profile image
Nanaedake in reply toSianT1

Did you post your vitamin results 2 months ago or would you like to post them here now? We might be able to make helpful suggestions. If you're not feeling well it could be vitamin levels.

SianT1 profile image
SianT1 in reply toNanaedake

I will post them now

SianT1 profile image
SianT1 in reply toshaws

Bloods are done early morning and fasting and I leave 24 hours between dose and blood draw

SeasideSusie profile image
SeasideSusieRemembering

SianT1 The Hashi's is causing fluctuations in symptoms/test results. When the antibodies attack, the dying cells dump a load of thyroid hormone into the blood and this can cause TSH to become suppressed and Free T4 and Free T3 to be very high or over range. You may get symptoms of being overmedicated (hyper type symptoms) to go along with these results that look as though you are overmedicated. It looks as though you are going through one of these hyper phases at the moment.

The hyper swings are temporary, and eventually things go back to normal. Test results settle back down and hypo symptoms may return. Thyroid meds should then be adjusted again, increased until you are stable again.

This is the nature of Hashi's - hypo - hyper - hypo as and when the antibodies wax and wane.

You can help reduce the antibodies by adopting a strict gluten free diet which has helped many members here. Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks. You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.

Supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed.

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

hypothyroidmom.com/hashimot...

thyroiduk.org.uk/tuk/about_...

Gluten/thyroid connection: chriskresser.com/the-gluten...

Most Hashi's patients tend to have gut/absorption problems. SlowDragon has good information and links about that.

SianT1 profile image
SianT1 in reply toSeasideSusie

Thanks for reply I have no hyper symptoms at the moment not even at the time of the blood results

SeasideSusie profile image
SeasideSusieRemembering in reply toSianT1

It's not compulsory :D

But your results are showing 'hyper' and this is what panics doctors into reducing doses, sometimes drastically as in your case. Going from 200mcg Levo/20mcg T3 to 50mcg Levo was far too much of a reduction. But the aim is to get your free Ts back into range (the TSH is more or less irrelevant when taking thyroid hormone).

When was that test done?

How long have you been on just 50mcg?

Have you another test booked to see where your levels are after the reduction?

SianT1 profile image
SianT1 in reply toSeasideSusie

The test was done at the end of May, I had 2 done since. One when I was on the 150mcg levo and 20mcg t3 and another when I was a few days in to the 50mcg (only because it was an outstanding test my previous gp ordered but it was never done). I haven't booked myself in for a blood test because I moved practices and I am hoping to speak to a new gp next week because my endo did not like where my results were thanks

SeasideSusie profile image
SeasideSusieRemembering in reply toSianT1

Have you researched Hashi's? I'll put some links to information below.

You can help reduce the antibodies by adopting a strict gluten free diet which has helped many members here. Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks. You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.

Supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed.

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

hypothyroidmom.com/hashimot...

thyroiduk.org.uk/tuk/about_...

Gluten/thyroid connection: chriskresser.com/the-gluten...

**

I think you need to get a new test as soon as possible, see where your levels lie and adjust dose accordingly.

SeasideSusie profile image
SeasideSusieRemembering in reply toSeasideSusie

Sorry SianT1 - just realised I posted those links before!

SianT1 profile image
SianT1 in reply toSeasideSusie

No problem :)

SianT1 profile image
SianT1 in reply toSeasideSusie

Ok I hope to speak to my new gp next week about this because I am not happy with my endo at all for having a go at me about the results

SeasideSusie profile image
SeasideSusieRemembering in reply toSianT1

Ah! Did he tell you it was your fault, that you were abusing your medication? This seems to be the new thing at the moment. They seem to forget that they are the ones who prescribe the doses and the patient just does what they are told.

When they then blame the patient for the results, it just shows how ignorant they are and how little they know about Hashi's. But rather than admit to this and dent their precious egos, they like to blame the patient.

So few endos know much about thyroid disease, most of them are diabetes specialists and pretend they know how to treat the thyroid!

SianT1 profile image
SianT1 in reply toSeasideSusie

No just told me I was over treated

SeasideSusie profile image
SeasideSusieRemembering in reply toSianT1

Well, at least he didn't blame you.

SianT1 profile image
SianT1 in reply toSeasideSusie

I don't know if him being angry with me would be blaming me or not but I felt like I did something wrong

Nanaedake profile image
Nanaedake in reply toSianT1

I've replied to two posts recently where the Endo blamed the patient for their results so it seems to be the popular way to 'treat' patients at the moment. Something to do with the fact that patients were actually well on T3 and the Endo's don't seem to like it????

SeasideSusie profile image
SeasideSusieRemembering in reply toSianT1

But why was he angry with you? He said you were overtreated. He prescribed the doses, you followed his instructions. I don't see why they have to take this route. The patient does nothing wrong, yet the doctor gets angry at them when their results show overtreated. They really do not know how Hashi's affects people, they have no understanding of it at all.

SlowDragon profile image
SlowDragonAdministrator

The trouble with Hashimoto's is it badly affects the gut, especially when under medicated.

Low stomach acid, reduces absorption of Levo and also leads to low vitamins- essential to test vitamin D, folate, ferritin and B12. These need to be at very good levels, this often means supplementing all the time even to maintain normal levels.

But more important is that Hashimoto's very very often also means gluten intolerance as result of gut issues

Then when T3 is added, unless we have already looked at vitamin levels and gone strictly gluten free then the whole thing can go haywire and results indicate over treatment (as low vitamins means not using thyroid hormones) so we feel hypo

Medics often don't understand it at all. They have little or no idea that it affects gut, leads to gluten intolerance and low vitamins

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

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