Brand change help: God where to start. Had right... - Thyroid UK

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Brand change help

paul1978 profile image
15 Replies

God where to start.

Had right thyroid gland removed in June 18

Was told to take 50 Teva daily

Cancer found

Removed left thyroid gland aug 18

Was told to up Teva to 100

2 weeks later upped to 150. 50 teva and 100 northstar

Got a new scrip in nov. 50 teva and 100 actavis

From the 12 nov I am having constant right flank pain

Constipated

Crying

Pain when driving

Lost appetite

Lost a stone in weight

Some nights I would just take 3 x 50 teva

Xmas eve doc put me up to 175 and Xmas day I lost my marbles had the worst depression day of my life and spoilt Christmas for everyone

I just can’t go on with this right flank pain

Has anyone had this problem with the bowel?

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paul1978 profile image
paul1978
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15 Replies
SeasideSusie profile image
SeasideSusieRemembering

Paul

Has anyone had this problem with the bowel?

Do you mean the constipation? One of the common symptoms of hypothyroidism. Are you taking anything for this? I find that taking magnesium citrate in the evening has helped my lifelong constipation. I also take psyllium husk capsules.

What are your latest test results?

It may not help to be mixing brands of Levo.

As mentioned in your previous post - Northstar, Actavis and Almus are all the same (Actavis rebranded).

Teva causes problems for many members. Some react to other brands.

I think you should do 2 things:

1) Take only one brand of Levo, see how you get on.

2) Get urgent retesting of thyroid to check levels if not done very recently, and post results on the forum so we can comment.

paul1978 profile image
paul1978 in reply toSeasideSusie

Thank you. Gp won’t do me bloods until I have been on 175 for 6weeks.

Last bloods on the 150 they only did

TSH 4.35 T4 was 16

MissGrace profile image
MissGrace in reply topaul1978

Those results show you probably have a way to go even without the ranges. Sounds like you have been in the wars for a while Paul. I hope the New Year brings something better for you. Make sure you use the great help and advice on this site to ensure you don’t remain under-medicated. Good luck! 😀

paul1978 profile image
paul1978 in reply toMissGrace

Hi miss grace.

I don’t understand.

I have no thyroid

So am I over active or under at he no

With the TSH being 4.35

MissGrace profile image
MissGrace in reply topaul1978

You’re under Paul. And you need to get that TSH lower by taking more Levo in my opinion. Then you’ll start to feel better.

shaws profile image
shawsAdministrator in reply topaul1978

I am sorry you have no thyroid gland at all. Your symptoms are due to you now being hypothyroid and I believe, and am not medically qualified, that someone without a thyroid gland should be given a combination dose of T4/T3 at the very least. You are hypo with a TSH of 4.35.

Levothyroxine is an inactive thyroid hormone and it has to convert to the Active Thyroid Hormone which is T3. T3 is needed by the millions of T3 receptor cells in our body and the heart and brain need the most.

You need a Full Thyroid Function Test which is:-

TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.

All blood draws for thyroid hormones should be at the very earliest, fasting (you can drink water) and allow a gap of 24 hours between last dose of thyroid hormones and the test and take afterwards.

This procedure allows your TSH to be at its highest as doctors, for some unknown reason to me, don't have much of an idea of hypothyroidism except look at the TSH which is from the pituitary gland - NOT the thyroid gland.

For us to have a better idea what is going on is to have a Full Thyroid Function Test. All tests have to be at the very earliest possible, fasting (you can drink water) and allow a gap of 24 hours between last dose and test and take it afterwards.

Ask GP to also test Vit D, iron, ferritin and folate. Deficiencies can also cause problems.

If GP wont do all of the recommended tests you can get a private one from our recommended labs who do home pin-prick ones and make sure you are well-hydrated a couple of days before blood draw.

Post results with the ranges for comments.

thyroiduk.org.uk/tuk/about_the_thyroid/hypothyroidism_signs_symptoms.html

I have my thyroid gland and am hypothyroid but levothyroxine, for me, was poisonous as it made me far more unwell than before I was daignosed. I am now well but I tried all of the alternatives, i.e. Ndt (natural dessicated thyroid hormones) made from pigs' thyroid glands and were the very original replacements before blood tests and levothyroxine (T4 alone) were introduced.

We cannot rush increases but doctors are apt to only look at the TSH (which is from the pituitary gland - not thyroid gland) and ignore free T4 and Free T3.

If you're in the UK they removed T3 from being prescribed with the result that thousands were left 'high and dry' and desperate and there is a case before the House of Lords who couldn't believe a thyroid hormone could be removed, without notice, returning people to illhealth again.

Take thyroid hormones, usually first thing, with one glass of water and wait an hour before eating. Some prefer a bedtime dose and, in that case, miss this dose if having a blood test next a.m. and take it afterwards and night dose as usual on the same day.

Always get a print-out of your results with the ranges and post if you have a query. Also copy/paste the 'pinned post' i.e. a suggested gift to a doctor diagnosing hypo.

paul1978 profile image
paul1978 in reply toshaws

Thank you shaws. Just wish I new what the flank pain is about

paul1978 profile image
paul1978 in reply toshaws

Hi

Could you send me the link for the pin pick blood test

Thanks

Clemmi profile image
Clemmi in reply topaul1978

medichecks.com/thyroid-health

shaws profile image
shawsAdministrator in reply topaul1978

There's a selection of recommended labs:-

Blue Horizon, Medichecks and Thriva

thyroiduk.org.uk/tuk/testin...

They are finger pin-prick tests. As you have no thyroid gland I think you the most important is Free T4 and Free T3. Follow advice above - post your new results onto a new post for comments.

I really feel for you as I did have a thyroid gland and couldn't believe how unwell one could be on taking something that was supposed to improve my condition.

in reply topaul1978

Hi you are under medicated with that reading TSH. After I had my thyroid removed three years ago I knew nothing about the thyroid was put on Levo and became very ill especially bad aches and pains in the legs also bad tempered which I never was before. I then joined this site. I took advice from the good people on here and had a private blood test done. I then posted the results and ranges on the site for answers I now take NDT which I source myself, never visit the GP or Endos and feel as well as can be expected for a 72 year old, no pain whatsoever.

The cost is around £21.50 per months for the NDT and private blood test money well spent and no hassle or visit to the GP.

SeasideSusie profile image
SeasideSusieRemembering in reply topaul1978

TSH of 4.35 is showing that you are underactive.

Having your thyroid removed will make you underactive.

For someone on replacement thyroid hormone (Levo), most people generally feel best when TSH is 1 or below with FT4 and FT3 in the upper part of their reference ranges.

Always ask for a print out of your results and when posting them include the reference range as ranges vary from lab to lab.

As you have no thyroid gland you may be low in FT3 so that should be tested as well as FT4.

It used to be that where there was thyroid cancer, the aim was to keep TSH suppressed but I'm not sure if that is still the case.

Nanaedake profile image
Nanaedake in reply toSeasideSusie

It seems to depend case by case on whether TSH suppression is called for. With partial thyroidectomy the new thinking is to wait and see if the patient needs levothyroxine but with total thyroidectomy then extent and type of cancer guides clinical decisions as I understand it but I'm a patient not a doctor.

RockyPath profile image
RockyPath

So sorry to hear of your plight, Paul1978. The gland is a central storehouse and production facility, but your individual cells throughout your body process T4 and make T3. T4 is like stone-cold coal in a bin. T3 is like coal that's been ignited and is making your home cozy. If they are not testing your T3 and rT3, they have no idea how your cells are doing. Furthermore, Sex Hormone Binding Globulin is the only blood test that actually gives an indication of the amount of T3 that your cells are getting. It goes up when you have plenty of T3. It goes into the red when you have too much T3. Reverse T3 is produced in high quantities by cells that have a genetic predisposition to not convert T4 very well. This makes you more hypothyroid despite taking levo. And the more levo you take, the worse the hypothyroidism is if you're not a good converter.

If you are taking lots of T4 and feeling worse and worse, I would certainly suspect the genes. There are a number of well-known genetic variations in DIO1 and DIO2 that impair conversion and result in high rT3. My endocrinologist couldn't fathom what was happening as he kept increasing the levothyroxine and I kept getting weaker and more symptomatic. The labs (TSH, FT4) looked ok. I had to do the 23andMe health and ancestry test to find the variants myself and then get on T3.

There's a UK lab that does a special thyroid gene test, but they appear to only focus on two variants. If you are a different variant, too bad, they won't catch it for you.

Hope 2019 is a better year for you.

Nanaedake profile image
Nanaedake

My thoughts are that as you've had cancer. Don't spend lots of money on gene testing that doctors will ignore. Work with your consultant and multidisciplinary team to get some solutions. you are not yet on an optimal dose of levothyroxine. You could ask for vitamin D tests as good levels of D3 aid recovery and most CCG'S have guidelines doctors follow. You doctor should be keeping track of calcium level s and if you lost parathyroid glands then parathyroid hormone too. Once that's sorted, see how you feel. If you still feel unwell then pursue it. Once your thyroid hormone is adequately treated you should feel well and if not, it's likely some other problem.

If in few months you get nowhere with current team of docs then ask for second opinion at a bigger hospital with a specialist centre.

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