Teva/Levo brands

[C1949K]

Below are my latest results.

I had a TT in May because of an enlarged goitre causing problems. Prior to that I was on Carbimazole.

The Ferritin and Folate are better since supplementing as is the Vitamin D - after advice from the forum!

My question is…..can Teva be causing my symptoms/problems? I see a lot written here on the forum about Teva intolerance.

When I left hospital I was given Accord Levo. My surgery/pharmacy has given me Teva which I have been on for two months (Accord for one month).

Initially I was doing well with the new medication regime but now I feel ‘rubbish’. Low energy, tummy upsets, humdinger headaches, breathlessness and allergy-related problems (histamine intolerance?), sweating especially after I take my second dose of Levo in the afternoon.

I take 50 first thing am on an empty stomach and with no other supplements/medications. I then take 25 late afternoon (12 hours apart) - again on an empty stomach! I reduced from the initial 100 a day because I was sweating so much and the surgeon felt I was on a too high dose and the T4 a little too high!)

I am alternating 75 and 50 a day over 6 days - with the support of the surgeon.

I cannot remember the last time I had a TSH reading! The T3 and T4 are both at the lower end of the range. But trying to increase the Levo is only making my symptoms worse.

How easy is out to change brands of Levo? Who do I ask?

Are my symptoms because I am not taking enough Levo?

Any thoughts/advice - as always, much appreciated.

Medichecks

TSH 2.55 (0,.27-4.2)

T3 3.50 (3.1-6.8)

T4 13.2 (12-22)

Ferritin 51.7 (13-150)

Folate 3.34 (.3,89)

Vitamin D 81 (75-200 optimal)

[RedApple]

C1949K, How easy is out to change brands of Levo? Who do I ask?

In theory, it shouldn't be a problem at all. You will need a new prescription though, so explain your issues to your presciber so that you can receive a new prescription.

Then take your prescription to your preferred pharmacy and tell them you will not accept Teva levothyroxine. They should comply with your request. If they will not offer you another brand, take the prescription to a different pharmacy.

[helvella]

After hyperthyroidism, of any cause, TSH should not be used to assess treatment.

As you say, your FT4 and FT3 are low, albeit technically within reference intervals. I'd be surprised if your dose is high enough.

And for your TSH to be high so quickly (for someone on levothyroxine), while not a good measure, does say you are under-dosed. It can take months, years, or forever for TSH to return to levels usual in those without thyroid disease.

Effectively you have dropped from 100 a day to 62.5. That is a 37.5% drop in dose. In one go.

It is extraordinarily unlikely that 62.5 could be enough for anyone after a total thyroidectomy.

In my view, you need to increase and might well need to reach 100 again. Quite possibly more.

Yes - taking Teva might be the cause of some issues. The tummy upsets. It isn't often suggested that Teva is not technically at full potency. However, some do seem to feel under-dosed - mostly people who have issues with it.

If your folate is that low despite supplementation, you need more. Are you prescribed 5 milligram tablets? Or taking 400 microgram over-the-counter products?

To change make, first ask your pharmacist. If they are helpful, that is all you need to do.

Do you have any other iron tests? That ferritin seems low but on its own does not give the full picture.

[pennyannie]

Hello Again :

Your ferritin has dropped since your last post and everywhere i researched suggested that ferritin needs to be at least over 70 for any thyroid hormone to work and support T4 conversion into T3.

I haven't a working thyroid - RAI thyroid ablation for Graves 2005 - and find that to feel my best I need to maintain my ferritin up at around 100 : folate at 20 : active B12 75++ ( serum B12 500++ ) and vitamin D at around 100 :

The TSH is irrelevant as you have had a thyroidectomy - and the HPT axis - the Hypothalamus - Pituitary - Thyroid feedback loop now broken by there not being a fully functioning thyroid completing this feedback loop system on which the TSH relies.

You must be dosed on your T3 and T4 blood test result as detailed in my previous post.

[C1949K in reply to pennyannie]

Thank You! That is what I thought about the TSH - not being relevant any more. I will discuss with gp and see if a change of brand and increase can help.

[pennyannie in reply to C1949K]

Ok then ;

Do you have any blood test results prior to surgery that show a T3 and T4 result that you felt ' well on ' ?

As if with these bench readings you would have a clue as to where you need to try and restore your T3 and T4 to - for optimal health and metabolism.

[C1949K in reply to pennyannie]

That’s a good idea! I will check my records - but I have to say the numbers just went up/down and there was a lot of on-going stress in my life for nearly a decade. Being ‘well’ is rather an idea I have rather than any real knowledge. I do know my specialist Prof R-J always said T4 to higher end but that would inevitably mean my T3 would also spike. I was diagnosed with an enlarged multi-noduled goitre with isolated T3 toxicosis. I also have AFib but since the surgery my heart (say no more!) has been so good and I feel so much stronger. I have a call into the gp to see if I can switch to the Accord and then increase to 75mg. I am due NHS tests in another month which may be enough time to see if 75 is a better dose. It was just too much when they were last taken. Just a bit of see what works - which my specialists have always been happy for me to do! Thank You for replying. Anything just helps me to think this through.

[pennyannie in reply to C1949K]

No problem - yes I looked back and read your last post and my reply which hopefully explained what the thyroid supported you with and all the treatment options for hypothyroidism.

It does take time for everyting to settle and vitamins and minerals to build to optimal so try not get too stressed as that doesn't help at all - I know - easier said than done.

[C1949K in reply to pennyannie]

Blimey - my gp has asked for me to go in for a face-to-face!

[pennyannie in reply to C1949K]

Ok - so just stay calm and see what he has to say :

We can try and explain anything that has you confused :

[pennyannie in reply to C1949K]

Currently you T3 is barely in the range at 4 points in a range of 37 so at around 11% and your T4 is just in the range at around 10% - I didn't see these results earlier :

Your T4 probably needs to be up in the top quadrant at around 75% + with your T3 skipping along at a lower % but definitely at well over 50% :

Do you have absorption issues ?

Maybe T3 only needs to be considered - but you will still need a strong core strength and optimal vitamins and minerals to support you.

[C1949K in reply to pennyannie]

Just returned from gp - who I have never met before. He is not interested in any information other than the latest bloods which show I am in range. He commented that I was giving him a headache with all my information! Shorter story…..he has agreed to me changing to Accord brand which is the one I left hospital with and see if that makes things better for me. I will go through all the information again - given to me on the forum and see how I can make changes with the aim to achieve better health. I have no idea what that is really - I have a dream of what a body should feel like - but perhaps not for me. My wonky thyroid has been a problem for decades (I am now 73) with no medication and then it flipped over 2011 and I was on Carbimazole. I chose not to have RAI. I then ‘managed’ whilst nursing my mother/her death, my hubby illness/death, accident/trauma, GB removal, moving house! All those things that you do not do if you want to have a stress-free life. Now I am just understanding ‘no thyroid’.Interestingly my pharmacist said they can order Accord - they only dispense Teva which is pence a packet. I might also consider MercuryPharma but would need another prescription for that as that is £9 a packet!

Thank You for your help. If I don’t have/so many AF episodes that will make everything worth while! ;-0

[helvella in reply to C1949K]

I'm not sure where you are getting those prices from, but they do not line up with the British National Formulary. (It isn't as simple as it should be because you can't always work out which make is meant.)

The two products which are definitely more expensive are Teva 12.5 and 75 microgram tablets!

(The BNF can be a few months behind reality but they have improved a lot on the past few years.)

bnf.nice.org.uk/drugs/levot...

helvella - Thyroid Hormone Medicines

I have created, and try to maintain, a document containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world.

From Dropbox:

dropbox.com/s/wfhrlmb5983co...

From Google Drive:

drive.google.com/file/d/11z...

[C1949K in reply to helvella]

From the pharmacist this morning! At least she says she will order in the Accord for me which was the one I was on when I left hospital.

[helvella in reply to C1949K]

I realise what pharmacies have to pay might not be the "official" prices.

Can you get hold of the prescription?

(They are supposed to give it to you if you ask.)

And take it elsewhere.

For example, Lloyds usually supply Northstar which, in 50 & 100, is Accord. (But their 25 is Teva. ) And Boots usually supply Almus which is Accord.

[pennyannie in reply to C1949K]

It is interesting as I too have had more than a fair share of stress and was diagnosed Graves a few months after a man I employed as my assistant manager physically threatened and verbally abused me, after work, and made sure that there were witnesses, which was planned and premeditated, and I then spent months going through the company grievance process but ' chocolate teapot senior management ' comes to mind.

I had RAI in 2005 and reasonably well until around 10 years later when at around 65 I found myself researching low ferritin, Graves and the consequences of RAI treatment and fell into this forum.

At 65 it seemed I couldn't run with a low suppressed TSH , my dose of T4 was reduced from 125 mcg down to 100 mcg and over 2 years became very unwell and nobody was interested as my results were in the range and was referred to as a conundrum.

After 2 years of various hospital appointments, and refused both NDT and T3 by surgery and our only county hospital I decided to start self medicating and have been able to get myself back on track as best as I can.

You do need to try to be your own best advocate and am deeply disappointed your appointment this morning came to nothing - can you change surgeries for continuity of care with someone professing to care - and how rude - respect costs nothing and is two way., he knows little, and felt of his depth and just shut you up.

Your Thyroid and How To Keep It Healthy might sound like it's not for us, but it is and doctor Barry Durrant-Peatfield writes in an easy to understand manner and wrote his book to equip hypothyroid patients to understanding and advocate for themselves.

I now just arrange a yearly full thyroid and vitamins and mineral blood test, take NDT and need to still supplement all the vitamins and minerals to keep myself able to be independent and haven't been to the doctor for around 5 years - details on my profile page if interested.

[JemBron in reply to pennyannie]

Yes I know Dr P and was under his care for a while. My specialist at the one-stop endo clinic at The Royal Surrey is great and I hope to return there for on-going advice. I also got a lot of useful info from Elaine Moore. I refused RAI because I understood that the nodules would become hard and almost certainly continue to grow. So, I just kept going on a tiny dose of Carbi, diet changes and lifestyle practices. However, the goitre just reached a point where it was causing problems. I was lucky that the surgery was a success and no damage to vocal cords. The right nodule was ‘going to the side’ and the left ‘going down’ which is more difficult sometimes to remove. Mine was over ten times the size of a normal thyroid! So time for it to go. Now time for my body to adjust to a different source of support. The only piece of good news is that my gp has returned to the surgery and she knows my story! She also respects my decision for private regular testing etc. I do not need to ever see any doctor who prefers to look at a computer screen rather than me! Like so many of us who use this forum - we care about our health and the forum has been so very helpful for me. If nothing else - I have less/no further AF episodes everything will be worth it. Early days.

Thank You for sharing your story and responding to my post. x

[pennyannie in reply to JemBron]

Oh, are you C1949K as well ?

I really think RAI should be removed as a treatment option - I guess it's all a game of % and costs - and obviously my experience of RAI was extreme as surely I would have thought knowing the potential side effects they should be acknowledged and explained to the patient - there's also a risk of cancer within 25 years - so I'm hoping to sit that one out, though Elaine Moore has now had cancer treatment,

[C1949K in reply to pennyannie]

Yes! I have checked my profile and only C1949K is on there. JemBron is an old profile name. I have been a member of the forum for many years. I cannot recall exactly what happened and I found I had to sign up again. I also do not understand how the old profile name came up whilst I was replying to the string already posted….

Yes, I agree although I am hearing more about surgical procedures rather than the RAI option. Whenever it was offered to me it was always - it may not work and more than one treatment might be needed and the goitre growth would continue. I had also discovered Elaine who has certainly not had the best outcome from her RAI. Dr P was also against that treatment for me. She is doing well for now and continues with her weekly supports.

I will look at my profile again over the weekend and put again my story as there appears nothing!

[pennyannie in reply to C1949K]

Oh, but you other profile page is there :

Glad to read about Elaine - I signed up for her Healthy Ageing blog but haven't had any emails from the site for months and thought something had happened to her ?

[C1949K]

My understand as of this morning….the pharmacist will order in the Accord as the gp has written the prescription stating Accord only. She was able to give me the one box they had and more will be in by the end of next week. I will just see if this means no more side effects - or not so severe. I will keep all then info you are giving me here on the forum and ‘be patience’ in giving my body the time to re-balance. Thank You.

[nellie237]

Is that folate result correct???

[C1949K in reply to nellie237]

Yes the result reads….. Folate - Serum 3.34ug/L (>3.89)

[nellie237 in reply to C1949K]

Your GP should have prescribed 5mg Folic Acid for a couple of months...........then you need to start supplementing. Before you do that, you need to get B12 levels checked.

Have you been tested for coeliac? Coeliac is the most common cause of folate deficiency.

[C1949K in reply to nellie237]

I will look at all the info I have received. I do not think I will get much help from the surgery. B12 is normally high as I supplement. I have been gluten-free for over a decade. I will look back at the folate test results and see what they show. Thank you for your thoughts and posting.