Help!

[MissWilliams]

150mg of levothyroxine and feel worse than ever. Exhausted fat itching trembling

Watched countless videos blogs but what can I do if the Gp is unsympathetic?

Are there private Doctors? Will they give me armour instead?

[SeasideSusie Remembering]

Welcome to the forum MissWilliams

It would help us to help you if we knew more about your thyroid journey, maybe you can fill in your profile or give us more information here.

Are you in the UK?

What are your current thyroid test results, please post them along with their reference ranges (ranges vary from lab to lab so are essential to be able to interpret your results).

Have you had full thyroid panel - TSH, FT4 and FT3, plus thyroid antibodies.

If only TSH and FT4 are tested you wont know if you are converting T4 to T3 well enough, if your FT4 is good but FT3 is low then that is poor conversion and low T3 causes symptoms.

Have you had key nutrients tested - Vit D, B12, Folate, Ferritin? These all need to be at optimal levels (not just in range but optimal) for thyroid hormone to work.

If your FT3 is low with good FT4 level and key nutrients are optimal then you may benefit from the addition of T3 to your Levo but you would need to be referred to an NHS endo for a trial on the NHS.

If you are in the UK it's unlikely that you'll get Armour or any NDT prescribed as it's an unlicensed medication. Some private doctors may provide a private prescription.

ThyroidUK has a list of thyroid friendly endos that you can send for if you are based in the UK.

[MissWilliams in reply to SeasideSusie]

Thankyou I did ask for the full bloods but the gp is unwilling

I will have to go private to have a full blood test

[Marz in reply to MissWilliams]

Did you go privately fir the tests ?

[Morning_gl0ry]

I wonder how long you have been taking levothyroxine for. I feel there is a common theme whereby it helps initially but around 2 years of taking it the effects aren’t so positive and all the hypo symptoms come back. My theory is that levothyroxine builds up in the liver and weakens it ability to function and convert t4 to t3. Itching can be a symptom of a struggling liver. I have read some research supporting this theory 🤓

[MissWilliams in reply to Morning_gl0ry]

I have taken it for over 6 years

[pennyannie]

Hello MissWilliams :

What you could do first is explain a little bit more about yourself and arrange a full thyroid panel blood test to include a TSH, Free T3 , Free T4, antibodies, inflammation and ferritin, folate, B12 and vitamin D :

You then post these results and ranges back on this forum in a new question and we can then talk you through what it all means and advise on your best steps back to better health.

I doubt your doctor will run these tests for you, mine refused back in 2017, so I did them myself using one of the several private blood test companies I found on the Thyroid UK website - who are the charity who support this forum.

thyroiduk.org

I choose a company who offer a nurse home visit to take the bloods as I find this the least stressful way, though of course, it comes at an extra cost.

Maybe you have thyroid blood test there - we can explain them if you care to share ?

It would also help us if we had some clues as to your thyroid journey, what is your diagnosis, do you have a thyroid auto immune disease, do you have a thyroid, or have you had a medical intervention and now without this major gland ?

[MissWilliams]

I have a thyroid gland and as far as I know I don’t have an auto immune disorder

I’m jittery all the time since this dose has been raised and I’m hearing my heartbeat

Sleeping at night is hopeless too

I will try to get my blood test report

Thankyou for responding

[tattybogle in reply to MissWilliams]

Hi ,

What was dose previously ?

What was it increased to ?

When was it increased ?

Feeling jittery / poor sleep could be a sign that the dose is now a bit too high...BUT, that depends how long you have been taking the higher dose for .. eg if you only increased very recently, then you can expect this feeling to settle down as the body adjusts itself to the new dose .

[MissWilliams]

Itwas 125 now 150

I have been taking the new dose for 8 weeks

[pennyannie in reply to MissWilliams]

So all these uncomfortable symptoms are since increasing from a daily dose of 125mcg to 150 mcg T4 - around 2 months ago.

OK - if you now have a different brand of T4 - it could be the fillers in the tablets ?

Within the tablets you already have - can you reduce back down to the dose you are happy on - 125 mcg ?

[MissWilliams]

yes I have reduced the dose and have decided to reduce to 0 over a 3 month period

Going down the natural route!

[Jaydee1507 Administrator in reply to MissWilliams]

In what way do you mean you are going down the natural route? To try NDT or no hormone at all?

Reducing Levo now is not something that I would recommend with nothing to fall back on.

We are here to help you and its been suggested that you get key vitamins checked as these are frequently low if not deficient in many hypothyroid people. This in itself will cause many symptoms and sometimes intolerance of thyroid hormones.

When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins. Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/help-and-supp...

There is also a new company offering walk in & mail order blood tests in Crawley, Hove and Reigate areas. No charge for blood draw in clinic. Check to see if there is a blood test company near you. onedaytests.com/products/ul...

Only do private postal testing early Monday or Tuesday morning.

[tattybogle]

assuming levo was correctly prescribed in the first place. (TSH over range, repeat test after a few months to make sure it wasn't just a one off, + symptoms of hypothyroidism) .... then stopping thyroid hormone replacement all together is not advisable . You might make yourself very unwell doing that ,people who try this often feel ok for few weeks/ months , then crash badly and it often takes them many months to get back to however well they were feeling even after they start taking it again.

As these symptoms of overmedication started since you increased dose from 125 to 150mcg then the best course of action is to reduce back to 125 mcg for a couple of months and see if the overmedicated symptoms go away ....,i would not recommend you decide to stop altogether .

"Going down the natural route " ~~There is no 'natural way' of replacing low thyroid hormones .. the only way to get thyroid hormones is to take them , either in the form of Synthetic T4 (Levo ) T3 (Liothyronnine) or NDT .. (Pig / Cow thyroid hormone)

or is NDT what you mean by 'natural route' ?

unless you have been told your hypothyroidism was from another cause. then it is most likely to be autoimmune even if your GP has never mentioned it .. as that is by far the most common cause of hypothyroidism .. and if autoimmune which damaged the thyroid slowly over time , then life long hormone replacement is nearly always needed.... the thyroid gland won't mend itself once it's been damaged by the immune system.

[MissWilliams in reply to tattybogle]

Thankyou I will be careful and I’m thinking of weaning myself off but I will consider NDT

Bless you

[pennyannie in reply to MissWilliams]

You must not wean yourself off T4 - you switch across from T4 to Natural Desiccated Thyroid when the time is right for you - I switched around 6 years ago going from 125 mcg T4 to NDT.

Before you switch you need to ensure that your core strength vitamins and minerals are all optimal - do you have readings for ferritin, folate, B2 and vitamin D - are you needing to supplement any of these ?

You will also need a current blood test reading detailing a TSH, Free T3 and Free T4 so you can plot your progress once on NDT.

[MissWilliams]

I understand but my go will not agree

[MissWilliams in reply to MissWilliams]

gp

[tattybogle in reply to MissWilliams]

GP's are unable to prescribe NDT on the NHS unless instructed by an Endocrinologist .., and it is incredibly rare to find an NHS endo who will prescribe NDT.

GP's are also unable to order routine fT3 tests, the NHS labs will usually refuse unless good reason is given .

So If you want to switch from Levo to NDT then you will usually have to organise your supply and blood testing testing privately.. either via private prescription from Endo , or by self sourcing NDT without prescription.

There are members here who use both these routes safely , so if changing to NDT is your plan , put up a new post asking for recommendation for an Endo who prescribes NDT , and /or safe sources of NDT. Members can then send you recommendations by Private Message (Chat)

Note* if you are sent any recommendations by Chat, PLEASE READ THIS POST before purchasing any NDT from the internet . healthunlocked.com/thyroidu... purchasing-thyroid-medication-without-prescription-please-be-wary

You need to sort your supply of NDT out before stopping Levo. You don't want to be without 'anything' .

Other members can advise better than me on the best way to switch over from Levo to NDT eg what dose to start on etc . NDT contains T3 as well as T4 (Levo is just T4). T3 is the active hormone and is more powerful than T4, so switching should be done carefully so as not to end up overmedicated.