How am I supposed to function on 50mcg levo (base dose) daily without a thyroid?

[DizzyD]

Hello all, last week GP reduced levo from 75/50mcg alternate days to 50mcg daily. It's only a small reduction but I am really feeling the impact over past couple of days. Lack of energy, sleeping during the day, can't think, etc. Feel tired upon waking. GP reduced levo because T4 was slightly over range.

FT4 22.8 Range 12 - 22 (medichecks)

Besides the levo I have also taken 30mg NDT daily, for quite sometime, alongside the the levo which my GP is unaware of.

FT3 4.29 Range 3.1 - 6.8. (Medichecks)

Over the past few years, I have treated my thyroid issue via this forum until GP recently called me in after a blood test whereby NHS thyroid results flagged T4 as over range, hence the reduction.

I can't understand how I am supposed to function on base dose of levo with no thyroid. Does anyone have any suggestions as to how i could manage/alter thyroid meds that might improve awful tiredness and lack of energy etc?

Please don't advise me to wait 6/8 weeks to get another thyroid test. Don't think I could last that long feeling like this.

Please note: I was put on Amiodarone 17 April for afib. One of the major side effects is that it can affect the thyroid and cause conversion problems taking thyroid numbers either up or down.

Any suggestions will be greatly appreciated.

[Mollyfan]

I am so sorry you are feeling rough….. has it been since you were given the amiodarone?

As far as I can see, amiodarone reduces conversion of T4 to T3, so your active hormone levels are likely to have reduced and remaining T4 levels increased. It also has a direct damaging effect on the thyroid, making things worse.

Could you see a cardiologist and get an alternative plan for the AF? Do they know you have a thyroid problem?

While I completely understand feeling the need to keep quiet about the NDT, it is difficult for the GP to advise you sensibly if he doesn’t know. Maybe you need to see a thyroid friendly endocrinologist to discuss the amiodarone/ thyroid problems, but personally I would not want to be on amiodarone.

Good luck…. Let us know what happens.

[Anthea55 in reply to Mollyfan]

Sorry DizzyD but I agree with Mollyfan.

You must tell your medics about everything you are taking. If you don't you are asking them to complete a jigsaw with missing pieces.

Best wishes sorting it all out.

[tattybogle]

i'm my experience of dose reductions ,it's quite usual to feel horribly undermedicated in first week or two after a dose reduction , even when the reduction is needed , and this often improves by itself over the next couple of weeks as things re-balance themselves ... so you do need to wait a bit longer and just see how it goes for another couple of weeks at least before you consider changing anything.

you clearly aren't able to use all the T4 you are getting from the 62.5mcg dose ( plus the 19mcg T4 from your NDT) and there's no point taking more T4 than your body is using .

if amiodorone has affected conversion of T4 to T3 then you may need to look at reducing T4 intake and increasing T3 which you can't do by increasing NDT (because it gives you more T4 than T3) ,..... you can only do that by adding T3.

What were your fT4 / fT3 results / conversion looking like before you added the amiodarone ?

[DizzyD in reply to tattybogle]

Hi Tattybogle test results prior Amiodarone which were prescribed 17 April are as follows:

Test done 5 April. 75/50mcg levo alternate days plus 30mg NDT split dose daily

THS. 0.86 Range 0.27 - 42

FT3 4.98. Range 3.1 - 6.8

FT4 17.8. 12 - 22

[tattybogle in reply to DizzyD]

So assuming both these medichecks test done 24hrs from last does levo/NDT . then they do show conversion is worse since amiodarone .. not sure how you fix that unless you can add some actual T3.

However if you took Levo 3 hrs before GP test , then NHS result that GP was looking at was presumably a bit more over range for fT4 than the latest medichecks (22.8) one .. so she reduced dose . You can see from the graph below that @ 3 hrs post dose fT4 is likely to be highest... you could try showing this graph to GP and letting them know you accidentally took Levo 3 hrs before ,which you don;t normally do , so you latest fT4 is not a proper comparison to the previous NHS tests she has on file ...... if you're lucky this may mean they agree to retest , and they may put Levo dose back up if fT4 is then in range ... but it will be a challenge to get them to acknowledge time of last dose is a problem .. most GP's will say "it's a valid measurement even if taken 3 hrs after levo , and it's over range ... blah blah"

Did you feel ok before the dose was lowered ?

details about that graph are in the reply's in this post : healthunlocked.com/thyroidu... suggested-thyroid-hormone-test-timing-protocols

.

[DizzyD in reply to tattybogle]

Hi Tattybogle so sorry for delay in replying to your most helpful response to my post. Really do appreciate the help and suggestions you so kindly put forward. In all honesty I think it would be a waste of time trying to explain to GP why NHS result was slightly higher than my Medichecks results. From my experience NHS does not do testing based on thyroid-hormone-test-timing protocols....I learnt all about test protocols on this amazing forum. Yes T4 gone up after I started Amiodarone. I think you made me aware of the possibility of this in one of my previous posts.

No I did not feel ok before the dose was lowered, had shaky hands, anxiety which were not a problem really. However, being aware of Amiodarone effects on thyroid the most cautious thing to do was get thyroid checked out by GP strictly because they needed to be made aware that the medication had a well known adverse effect on T4 hormone conversion.

When you suggested that I could add some T3 to fix some of the conversion issue (have a supply of this) do you mean I change from levo /NDT combo to levo/T3 combo?

When I saw my Medichecks results my first thought FT3 was not that great.

Sincere thanks you

[SeasideSusie Remembering]

DizzyD

FT4 22.8 Range 12 - 22 (medichecks)

Besides the levo I have also taken 30mg NDT daily, for quite sometime, alongside the the levo which my GP is unaware of.

FT3 4.29 Range 3.1 - 6.8. (Medichecks)

Are these FT4 and FT3 results from the same Medichecks test?

Is this the FT4 result that prompted your GP to reduce your Levo or has the GP done their own test, if so what were those results?

If the Medichecks results are from the same test, did you take your last dose of Levo 24 hours before the test and split the NDT into 2 or 3 doses and take last dose 8-12 hours before test? If so then I'm wondering if you're taking the right combo meds. Your results suggest that you might be better with T3 added to Levo so that you can balance the T4:T3 ratio better, your high FT4 suggests you need a bit less Levo and your low FT3 suggests you need more T3 than the NDT is giving you. If you're taking 30mg NDT that's about 4.5mcg T3.

[DizzyD in reply to SeasideSusie]

Yes they are from the same Medichecks test Susie. GP called me because she done a thyroid test two days after I had my private test done of which are shown above. Took my Medichecks result with me when GP called me in after she got NHS test results. GP compared her test results with Medichecks one. Can't recall the exact numbers but they were pretty similar.

Prior to my Medichecks test I followed all the criteria recommended on this forum in prep for the test.

On the morning of GP test I mistakingly took morning dose of levo/ndt though.

GP asked why I get private test. Told her because NHS does not test for T3. She insisted TSH is the most meaningful number and T3 in not in the least bit important. Grrr my brain switched off....I just wanted out of there.

Hope this helps

[SeasideSusie Remembering in reply to DizzyD]

DizzyD

GP reduced levo because T4 was slightly over range.

She insisted TSH is the most meaningful number

So which result is she actually using to adjust your dose - TSH or FT4?

Is she using the GP test result or the Medichecks?

What was the TSH result of both GP and Medichecks tests?

If you don't have a copy of the GP results then ask the receptionist to print them out for you, do this every time you have a test and keep a record at home.

On the morning of GP test I mistakingly took morning dose of levo/ndt though.

OK so that may have shown quite a difference in your FT4 result with your GP test then compared to your Medichecks test when you followed the advice about timing of last dose. Your Medichecks FT4 was over range following last dose protocol so presumably your GP FT4 was over range too?

[SlowDragon Ambassador]

There’s nothing on your profile

What was reason for thyroidectomy

Do you have Hashimoto’s

Ever had both thyroid antibodies tested before or after thyroidectomy

When were vitamin D, folate, ferritin and B12 last tested

What vitamin supplements are you currently taking

Remember to stop taking any supplements that contain biotin 5-7 days before any blood test

Do you normally split your NDT as two smaller doses every day

Day before test last dose levothyroxine 24 hours before test

Last dose NDT 8-12 hours before test

Your are definitely going to need to tell GP you’re taking NDT

What was NHS test result for TSH

Any NDT or T3 will usually lower TSH ……often significantly

[DizzyD]

Reason for thyroidectomy in 1992...cancer.

No don't have Hashimotos.

Always have thyroid antibodies tested via Medichecks and NHS

Vits tested last on 7 June...they were not optimal so I have took measures to improve them.

Had no biotin well in advance of test.

Yes I split the NDT

Last dose of levo was 24 hrs before test

Last dose of NDT 12 hours before test

Can't recall NHS test result for (GP compared them...they were very similar) TSH but Medichecks is TSH 0.174 0.27 - 4.2

GP was told me ever so nicely to stop getting private blood tests done an leave it to NHS. Really!

Thanks SlowDragon

[Brightness14]

You were taking 62.5 levo per day plus about 19 T4 from the NDT i.e. total 81.5 T4 plus 4.5 of T3 from the NDT this was very little anyway for someone without a thyroid. Now you are taking less. I started having AF last year but started taking natural Hawthorn Extract and now it's completely gone I still take the Hawthorn two per day.

I live in France and had been taking NDT for over seven years. NDT is banned in France. I still go to the GP every four months and collect my prescription for Levo and T3. If I were you I would keep quiet about it.

[DizzyD in reply to Brightness14]

Yes I am taking less thyroid meds now because Amiodarone messed with conversion, push thyroid hormones either up or down. Unfortunately T4 went up so dose of levo was adapted. My AFib was horrendous so Amiodarone was given as the only option left to me. I would love to use alternative treatment like Hawthorne but I am on several heart meds (anticoagulants) and don't know if there is any contraindications. There is another bigger problem though. If I were to stop Amiodarone they stay in my system for 6 months or longer. Either way I am in for a rough ride.I could use T3 which I have a supply of in place of NDT/LEVO combo but it's a nightmare trying to cut my 25mg of T3 to get correct dose.

Hey Brightness14, I will keep quiet. Mum's the word.

[Litatamon in reply to DizzyD]

You need a better pill cutter. I have a 25 & have no issues whatsoever.

[Brightness14]

I use 25mcg T3 and started with 8th's what a nightmare now down to 12.5mcg so not too bad. Yes there could be problems taking Hawthorn I really don't know it's best to try and keep safe. Yes Mum's the word for sure. Good Luck.