Feel worse after taking Levo 50 for 31 days now. Any ideas why please?

Hi All

Here are my thyroid results

The first is from 26/4/19 the other from 25/2/19 - on no treatment for both dates

26/4/19 - TSH 4.24 (0.27-4.2) on 25/2/19 this was 3.71 (0.27-4.2)

26/4/19 - free T3 5.18 (3.1-6.8) on 25/2/19 this was 4.97 (3.1-6.8)

26/4/19 - Free thyroxine 12.7 (12-22) on 25/2/19 this was 13.400 (12-22)

26/4/19 - Thyroglobulin antibodies 113 (0-115) on 25/2/19 this was 105 (<115)

26/4/19 - Thyroxine peroxidase antibodies 9.7 (0-34) on 25/2/19 this was 19.3 (<34)

Based on these, my endo started me on 50 levo on 17/5/19, which I have taken every day at about 0400

My main symptom is muscle aches

And I can honestly say that my muscles are not better at all, they are worse

Also, I feel the Levo has caused my usually mild tinnitus to be more troublesome

So, my questions are

1- Can Levo make symptoms worse?

2- Can it cause tinnitus to spike?

3- Can it make tendinitis worse?

4-What are my options given that levo is not helping? I've read many stories here that some people have stopped Levo and have improved on NDT alone

5- My first 28 days Levo were Northstar and my current one is Almus

However, the inner blister pack in both is the same - Actavis. Why is this?

What other Levo manufacturers are there in UK? I'm thinking maybe another manufacturer's Levo may be better?

Any feedback greatly appreciated

Thank you

Alps Holiday

.

[SlowDragon Administrator]

It takes at least 6 weeks for each dose increase to have full effect. Bloods should be retested 6-8 weeks after each dose increase

The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range

NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.

nhs.uk/medicines/levothyrox...

Also what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

Common for symptoms from low vitamin levels to get worse when start Levothyroxine

Ask GP to test vitamin levels

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).

All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels

List of different brands of Levothyroxine

Some are same brand inside but different box outside

thyroiduk.org.uk/tuk/treatm...

[Hidden in reply to SlowDragon]

Thank you slow dragon

Very thorough as usual

Yes I have looked up the different Levo's and will request one with just calcium added

Thank you

Alps Holiday

[SlowDragon Administrator in reply to Hidden]

Which one is that?

Teva brand upsets many people

All calcium, including in foods should be minimum of four hours away from taking any Levothyroxine

nhs.uk/medicines/levothyrox...

Also what foods to avoid

See it's recommended to avoid calcium rich foods at least four hours from taking Levo

Also to avoid ALL soya

[silverfox7]

Welcome to the forum!

As SlowDragon says it's early days but they issomething else you mention-should you try a different brand of Levo. It's not uncommon to find you may be taking a brand that isn't right for you. Medication have fillers in them to bulk up the tablet and to keep it stable and usually contains more that one filler so different brands could have tablets that vary.

So if you take an antihistamine one hour before your thyroid meds then if you still feel off then you could have an allergy. If you feel so much better then that confirms it. So the general advice is to try a different brand though you may have to change more than once.

When you are happy with a dose then ask your doctor to name it on your prescription and check that the pharmacist has put it in your notes.

You may also have noticed that this forum is run by Thyroid U.K. If you look online they have an excellent site with loads of useful info that your doctor probably hasn't mentioned. Shout out if anything you don't understand and remember nothing is too trivial-we have all been there!

[Hidden in reply to silverfox7]

Thank you silver fox, very helpful

Yes I have looked up the various Levo's on the tuk site which helvella sent me

And have found one with just calcium added

The Actavis had about 6 extras

So will ask doc to change to that

Thanks!

Alps Holiday

[MaisieGray in reply to Hidden]

Are you sure that there is a Levo combined with calcium as the excipient? Excipients are generally inert substances (other than where they have a specific function such as retarding the release of the active ingredient for instance) and less likely to be something like calcium which should be supplemented away from thyroid meds.

[Hidden in reply to MaisieGray]

Hi maisiegray

Yes if you look on the tuk thyroid list there is Martindale thyroxine, with a choice of one of a total of 6 fillers added

This includes calcium phosphate and calcium carbonate

I imagine it's ok as the quantities must be in very tiny amounts ?

Thank you

Alps holiday

[Hidden]

"Can Levo make symptoms worse?"

A short answer is "Yes, it sometimes can". But that doesn't mean that you should stop taking it! As has been said, one possible reason is that the particular brand doesn't suit you. Levothyroxine is levothyroxine and your body needs it, but different brands use different fillers to make the pills, so some might not agree with you.

Another reason is that taking Levo tends to suppress the body's natural production to some extent. I'm not sure of the technical explanation but it's as if your thyroid, which is already struggling, is so relieved to have the support that it decreases its own production. This can make you feel worse because the replacement dose is less than your body needs.

Except for someone who has had their thyroid removed, 50mcg is the usual starting dose, (though some start on 25mcg), then increasing by 25mcg increments, every 6-8 weeks. This gives the body time to adjust, as nothing happens fast with thyroid!

So another possibility is that you are very sensitive to thyroxine and 50mcg is too high a starting dose for you. Perhaps you need to begin with 25mcg, or possibly even less, (though 25 is the smallest tablet you can get) and work up very gradually. This should make the side effects more bearable too. For several months I've been on 100/75mcg on alternate days, down from 100mcg a day. It took that much time for it to become obvious (I needed to convince the medics) that symptoms are worse and I need an increase after all. That illustrates how very sensitive the whole system is.

This thyroid business needs endless patience, but do not give up!

[Hidden in reply to Hidden]

Thank you Jnetti

Some excellent pointers there!

starting on a lower dose and building up sounds a good idea

Is it because this is one way to 'trick' the thyroid to go on producing its own

Also, I may be very sensitive to thyroxine, so another reason to start Small

Ok, I shall try 25 tomorrow morning and see what happens

Thank you for the tips maisiegray

Alps holiday

[Hidden in reply to Hidden]

Just to warn you, I'm not medically trained and almost all I know about the thyroid has been learned on here

[Gingernut44]

In a word - YES - it has mine. My once mild Tinnitus is much worse, I now ache all over with stiff joints - I could go on. I started on Actavis (Northstar and Almus are the same thing) then tried Mercury Pharma, they both gave me headache, severe bloating, constipation and stomach ache (all 24/7) I haven't tried Teva and I'm not going to, I've got enough problems without that. I am now on Wockhardt which has relieved the stomach ache and headaches (mostly) but am still left severely bloated and sometimes constipated. I've also had huge weight gain. Good luck, it's a long and tiresome road your on.

[Hidden in reply to Gingernut44]

Hi ginger nut44

Sorry to hear you too have tinnitus and that it gets worse with Levo

And you have tried various brands and now use wockhardt and some symptoms have improved

I use masking to help me sleep btw

I use 2 sound machines as I am hard of hearing and the R is much worse

So, I use a earbud in that ear with its own sound machine noise - wave noise is nice btw

And another sound machine without buds for the L ear - usually rain noise

Do you?

Thanks

Alholiday

[Hidden in reply to Gingernut44]

I started out on Mercury and was afraid to try anything else in case. But then they didn't have the 25mcg in it so I decided to try Teva because that was the one they had and it was only a small part of the 75mcg I was taking every other day. It seemed to make no difference, so I now take whatever brand they give me.

So again we are all different.

Constipation, weight gain and tinnitus are all symptoms of hypothyroidism but maybe some brands make it worse or don't help (very, very slightly different amounts of Levo in them perhaps, or some absorb better than others, or different fillers interfere or help absorption??? Could be umpteen different reasons. But whatever suits each individual is the important thing.

[Hidden]

I'm on 50mcg Levo and have been for 5 months. My GP refuses to increase it. In addition to my hypo symptoms ( I have Hashis) I'm experiencing problems I never had prior to taking Levo: tingling extremities and numbness in my feet, lower legs and hands, incredibly sore and stiff finger joints, achiness...

A year ago I tried Teva Levothyroxine and reacted very badly. The latest isn't Teva but I'm very under medicated so that could be the cause of my extra problems. I'm tired of my GP dismissing my symptoms and fixating on TSH only. So I've ordered NDT and am going it alone - not a decision I made lightly but my health is being put at risk by ignorant and arrogant GPs who prefer to suggest I'm in need of psychological help rather than proper treatment.

Good luck. You'll find fantastic help here, I can't praise the administrators enough, nor the great people who comment.

[Hidden in reply to Hidden]

Thank you little island

You do seem to have many hypo problems

I never thought that so many things are linked to the thyroid

I've heard on here that others don't get on with Teva either

Yes , I feel that GP's, as well as being super busy, are 'tied' by the instructions from their HQ to toe the line

Good luck with NDT

I've heard of quite a few who have gone down this route - with success as well

Please PM me as to your supplier and what your dosing plans are?

Thank you

Alps holiday

[Hidden]

Often feeling worse can be related to low vitamins and minerals, especially low ferritin. B12, vitamin d, folate and ferretin are all needed at a good level for your body to use thyroid hormones, if you are unable to make good use of the hormones they can make you a bit toxic.Thyroid treatment has so many variables and things that can effect treatment it can often take a while to get all the building blocks in place.

[Hidden in reply to Hidden]

Thanks for the tips mandyjane

Alps Holiday