Help with meds

[kezzabird30]

Hi Me again!

I have had underactive thyroid for around 9 years. I have been on various mg of Levothyroxine the whole time and have felt awful. I am currently on 175mg.

In addition to this, I have introduced myself without the doctors knowledge, 25mg of T3 that I have gradually increased over the last 3 months to reach the 25mg. In the beginning I felt great for about a month but slowly I have started to feel rubbish again.

I had blood tests on Monday and the doctor now wants to speak to me. My TSH was 0.01 with a range of 0.27 to 4.2. They also tested my Triglycerides for some reason as they thought my blood was glupey and it is 5.3 with a range of 0.0 - 1.6.

I also have hashi's with my last blood test in Feb showing both antibodies in the 475 range so way way over where they should be.

My TSH in Feb was 7.5 despite being on 150mg Levo so the doc upped levo to 175mg.

That is when I introduced T3.

So my question today is, I know the doc is going to reduce my levo which I dont care about as I feel rubbish whatever mg I am on but I have been reading that maybe I should have reduced my T4 when introducing T3. Is this right? Is this why my TSH is suddenly so low?

I am 47 and feel 97. I am ready to give up on everything. Every day is a real struggle with tiredness, It is debilitating. I work full time. walk 5k a day with the dog and yet my leg muscles look like they are melting off me. I get home from work, walk the dog then go to bed.

I really feel like reducing all meds over the next couple of months to the point where I am not taking anything and see where I sit as the doctors wont listen to my symptoms and I just don't know which way to turn now.

Just waiting for the doc to call now but I am at the point where I think what is the point in talking to them, they do not listen. thanks for reading x

[SeasideSusie Remembering]

kezzabird30

but I have been reading that maybe I should have reduced my T4 when introducing T3. Is this right? Is this why my TSH is suddenly so low?

It depends on the FT4 level before adding T3 whether you need to reduce your dose of Levo. If your TSH was 1 or below, that gives the highest possible FT4 that you can make, shows how much conversion to T3 you have and whether you need to add T3. If the FT4 was over range or near the top of the range then lowering dose of Levo before adding T3 is generally suggested. If FT4 was lower than about 75% through range it's not really necessary to reduce Levo because adding T3 is going to reduce the FT4 level anyway.

Adding T3 lowers, and can even suppress, TSH.

[kezzabird30 in reply to SeasideSusie]

Hi Seaside Susie, thanks for replying. My results before T3 intro was

TSH 7.5

Free T3 4.6 (3.1 to 6.8)

Free Thyroxine 15.8 (12 - 22 )

Does that help?

[kezzabird30 in reply to kezzabird30]

Thyrogobin 417 (0 - 115)Thyroid Peroxidase 472 (0 - 34)

[SeasideSusie Remembering in reply to kezzabird30]

kezzabird50

Those results would have prompted the response that you need to get your TSH down to 1 or below by increasing Levo to see where yourFT4 and FT3 levels lie before adding T3, you would also have been advised to test key nutrients and supplement if necessary to get them to optimal levels before adding T3.

As you were already taking a decent dose of Levo at the time of that test it begs the question as to why your TSH was that high. Your FT4 was quite low in range at 38% but one wouldn't expect to see your TSH to be so high with that FT4. So what has happened for your TSH to be so high? Did you drink coffee before the test - that affects TSH. Some kind of assay interference maybe.

Looking back at previous posts over the years your TSH seems to have only once looked anything like normal with a normal FT4:

Jan 17 TSH 0.46, T4 20.8 Still on 100mg Levo

All the rest have shown TSH to be too high for a treated Hypo patient, and in many instances over range.

If you haven't already done so I think you need to make a list of all your previous results and discuss them with your GP, pointing out that treating with Levo should reduce your TSH to below 2 (absolute maximum, preferably low end of range):

gponline.com/endocrinology-...

Under the section

Cardiovascular changes in hypothyroidism

Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.

and it's clear that your TSH is not responding to whatever dose of Levo you are taking. It may be that you need to see, or at the very least your GP needs to speak to, an endocrinologist to try to get to the bottom of why it's not working for you.

Most endos are diabetes specialists who know very little about the thyroid, so it's important to find an endo who is actually a thyroid specialist.

Your antibody results confirm Hashi's which you already know.

[kezzabird30 in reply to SeasideSusie]

So whenever I have blood tests, I also do on a morning, do not take my meds or have any caffeine, that was a tip I learned from here.

The doc has just called, as suspected, they are lowering my Levo to 150mg, I tried again to talk to them about how I feel and regardless of my range whether it is high or low, I still feel awful. Although sympathetic, he was ruled by the ranges and not my symptoms.

I take Selenium 200ug, B Complex vitamins, D3000 + K2 spray I exercise, My weight has gone up ( A stone in 6 months) I have been eating more than usual because I feel so rubbish it is easier to have a take away than cook.

I have seen 3 diff endos over the years in 3 diff counties, (I live in the middle of all 3 so was able to go to each) Like you say, all were diabetes specialists and again did not listen, just told me to exercise more.

Is it dangerous if I just wean off everything? I am at that point where I just feel like nothing is working so why am I putting all this in my body. I tried Gluten free, Did not notice a huge difference but to be honest, when you feel so rubbish, it takes so much effort to stick to it that I just gave it up, my bad

k

x

[SeasideSusie Remembering in reply to kezzabird30]

kezzabird30

Have you told your GP that you are taking T3 and that this would account for the low TSH?

Is TSH all that was tested this time? If so then I would refuse to reduce dose based purely on TSH. TSH is not an indicator of thyroid status, it's the actual thyroid hormone levels - the FT4 and FT3 - that tell us this. If these were not done then ask for them to be done and if your FT3 is over range you will agree to lower your dose otherwise you are not overmedicated.

It's a difficult situation to be in, I know because I have this problem, my TSH is suppressed but my FT4 and FT3 are well within range. However, I don't have your problem, I don't have Hashi's and my TSH has been suppressed for over 20 years with no explanation and nobody bothering to find out why.

I don't know why your results are like this but it's something a good thyroid specialist should look into and I doubt very much whether this will be done on the NHS nor will you find a good thyroid specialist n the NHS.

Is it dangerous if I just wean off everything?

I can't answer that I'm afraid but I would say it's pretty obvious that you need thyroid medication because eventually the Hashi's will destroy your thyroid.

[kezzabird30 in reply to SeasideSusie]

No I did not tell the doctor as to be fair, I dont think he would have even known what to do with that information.

I will pay for some more private bloods that do FT3 and FT4 as they only tested TSH this time.

Maybe it is time I looked for a good Endo in my area privately. I am just worried that they will end up being the same as the NHS endos

thanks for taking the time to reply

K

[SlowDragon Administrator]

Which brand of levothyroxine have you been taking when on 175mcg levothyroxine

Many people find different brands are not interchangeable

Teva brand upsets many people

Taking almost any dose of T3 will suppress TSH

This is problem with self medicating T3 ….Because then GP wants to reduce levothyroxine

Strongly recommend you get FULL thyroid and vitamin testing done via Medichecks or Blue Horizon NOW while still on 175mcg levothyroxine and 25mcg T3

It’s incredibly easy to miss the “sweet spot” …..and over medication can leave you as exhausted as under medicated

ESSENTIAL to test vitamin D, folate, ferritin and B12 at least once year

Also ESSENTIAL to stop vitamin B complex for week before ALL BLOOD TESTS as biotin in B complex can falsely affect test results

How are you taking your T3

Many people need to split the dose into 2 or 3 smaller doses through the day

Testing

all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

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

Day before test split dose of T3 into 3 smaller doses, taking at approx 8 hour intervals, with last dose 8-12 hours before test

Come back with new post once you get results

[kezzabird30 in reply to SlowDragon]

Brand of Levo is Actavis?

Ok I will get on medichecks as today is thyroid day isnt.

I did not stop B complex before test as did not realise. Will def do that this time.

Thanks for taking the time to respond

K

[LMor in reply to kezzabird30]

Hi. I used to be on Actavis as I found it perfect for me…..They then changed to Accord & since that time I developed extreme thyroid symptoms. I had to change eventually to Mercury as I couldn’t cope with the symptoms. Have you tried a different brand or have you always been on that one?

[kezzabird30 in reply to LMor]

I just get sent what I get given, I do not have a say in it. I will have a look when home from work and see what brand is at home as I have some at work but they may be older than the ones I am using. Thanks for the tip

[SlowDragon Administrator in reply to kezzabird30]

Once you find a brand that suits you, best to make sure to only get that one at each prescription.

Watch out for brand change when dose is increased or at repeat prescription.

academic.oup.com/jcem/artic...

Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).

New guidelines for GP if you find it difficult/impossible to change brands

gov.uk/drug-safety-update/l...

If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.

healthunlocked.com/thyroidu...

Posts that mention Teva

healthunlocked.com/search/p...

Teva poll

healthunlocked.com/thyroidu...

[kezzabird30 in reply to SlowDragon]

Thank you so much. You have all talked me down from the ledge today x

[SlowDragon Administrator]

Activis now renamed as Accord

They don’t make 25mcg tablets

On 175mcg ….do you cut 50mcg tablets in half

[kezzabird30 in reply to SlowDragon]

Ah those are the 100mg I have in my draw at work, maybe i should check the ones I actually take at home and report back 😀👍

[SlowDragon Administrator in reply to kezzabird30]

Watch out for Teva brand…..upsets many people..best avoided

[kezzabird30 in reply to SlowDragon]

Are doctors agreeable when you ask them to put a certain brand on prescription?