Help Advice please: I hve been on throxine for... - Thyroid UK

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Help Advice please

Janetwhitt profile image
11 Replies

I hve been on throxine for 4 years and felt unwell all that time, soon as I started 25mg it gave me what I can only describe as pressure in head and sinuses, each time I try to go up to 50, 75 mg this pressure pain in head with headaches gets worse, I then started with chronic migraine and dizziness.

Would some of you lovely people look at my results and let me know what you think please.

T4 13.4. 11-23

TSH 1.86. 0.35-5.00

Vit D 74.3. 50-150

B12 667. 200-900

Ferritin 58. 12-300

No T3 I have asked twice and it has been refused twice.

I am on 50mg thyroxine and I take vit D, B complex and vit c each day.

I am vegetarian and have a low fat healthy diet. I got so desperate for help I asked gp to send me to endo to ask if I can try NDT hoping it may not give headaches like thyroxine. He refused and said I should take thyro with painkillers and antihistamines to help headaches and of cours migraine meds!

So I decided to come off levo my head felt better but I felt just as bad if not worse with pain in my body and zero energy, freezing cold etc. I bought thyroid glandular online and it helped a lot, but know I cannot get anymore it says they cannot ship to uk! So back to the dread of having to take levo again 😞😞

Thats my story so far.

Janet

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Janetwhitt
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11 Replies
Anthea55 profile image
Anthea55

Which glandular was that? Some are available in UK.

Janetwhitt profile image
Janetwhitt in reply to Anthea55

Hi it was American Biologics, Desiccated Thyroid.

Nanaedake profile image
Nanaedake

You really need an FT3 result along with FT4 and TSH to see what's going on. Without the FT3 I can't say for sure, at the moment your TSH is reasonable but your FT4 is low indicating you could increase your medication a little but if you feel well there's no need. Your ferritin looks a little low but it's a very big range up to 300? Normally half way in range is thought to be good.

What about folate, there's no result? B12 and folate work together.

I don't know what levothyroxine you're taking but you could try a different formulation and see if that's better for you. They don't all suit everyone.

Janetwhitt profile image
Janetwhitt in reply to Nanaedake

Thanks for the advice

I will try again for T3, they keep saying it is not needed! I was on Teva but prefer murcury pharma, but another problem is they keep swopping it, even though I ask them not to which has not helped. They say they cant always get the same stock. No folate never had that done either will ask also.

If ferritin is low what is best to raise it?

Thanks

Nanaedake profile image
Nanaedake in reply to Janetwhitt

You may have to pay and get FT3 blood test privately but you need to do them all together FT3, FT4 and TSH. You shouldn't add T3 in any case until testing FT3. It's unlikely your GP will oblige as they are all being told not to prescribe it by their CCG. Thyroid UK website have reliable laboratories listed that a lot of people on this forum use if you want to do your own tests.

To raise ferritin you take ferrous fumerate. As it's not desperately low, just once a day and retest in a few months. It's not safe to go too high as your body stores iron. You could ask your GP if they will test it as you are going to pay for your own supplements and want to stay within a safe range. Mid range is good.

I'm trying Spatone liquid iron at the moment and it seems pretty easy and ok to use. There are no other added vitamins which makes it easier if taking other supplements. Always take iron at least 4 hours apart from thyroid meds and I take with 1000mcg of vit C as it helps to prevent stomach discomfort apparently. Seems to work.

Lots of people have had problems with TEVA both the old formulation and the new formulaton. If Mercury Pharma suits you then tell the pharmacy you are unwell on TEVA and please don't supply it. Take your script elsewhere if needs be. You could also try Actavis and Wockhardt which are available in the the UK. See which one suits you best and stick to it. TEVA has manitol I think and some levothyroxines have acacia which people can react to or it might just be the way the particular medicine is absorbed in your stomach. They all have different fillers.

Low fat is not very healthy. You need fat to make hormones. I'd try a higher fat/lower carb diet (but not trans fats or highly processed veg oil). Your Ft4 is far too low in range, so you need an increase in levo. Vit D could do with being higher (as it is summer and the highest it's going to be in the year) - aim for high 90s or more.

Janetwhitt profile image
Janetwhitt in reply to Angel_of_the_North

Ah ok never thought about fats in that way. I would love to increase Levo but it increases migraines so bit of a trade off, interestingly neuro thinks migraines are hormone related, bit of a turmoil because more migraines see me on all sorts of extra medications. I will increase vit D for sure.

Janet

humanbean profile image
humanbean

For info on getting private tests done without a doctor see this link :

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

The two most popular thyroid tests on this forum are :

bluehorizonmedicals.co.uk/t...

medichecks.com/thyroid-func...

They are similar but not identical. The BH test includes serum B12 and CRP, the Medichecks test includes Active B12 and high sensitivity CRP.

You can also test various combinations of things for more or less money. For example, testing just TSH, Free T4 and Free T3 can be done more cheaply :

medichecks.com/thyroid-func...

bluehorizonmedicals.co.uk/t...

Both companies have regular special offers. If you register with both companies you will be emailed about them.

humanbean profile image
humanbean

Ferritin 58. 12-300

Your ferritin (iron stores) is too low. It is currently 16% of the way through the range. Most of us feel best if it is 50% of the way through the range or a smidgen over i.e. roughly 150 - 170 or 150 - 180.

Iron is tricky though - on a few occasions people have quoted results for low ferritin, supplemented iron, their ferritin hasn't risen much or at all, and instead their serum iron has shot up, which is NOT a good thing to happen at all. So, knowing more about your iron-related results before supplementing is safest. There is an iron status test that doesn't cost a huge amount :

medichecks.com/tests/iron-s...

Janetwhitt profile image
Janetwhitt in reply to humanbean

Thank you so much for this help you are all truly great people.

I will check it put now

SamanthaVictory profile image
SamanthaVictory in reply to Janetwhitt

Before taking supplements I'd just check out the relationship between Ferritin results and being vegetarian. I'm afraid I'm not much help as I don't have the info/facts to hand atm but I know that the way 'iron' is processed and stored in the body is different depending on the type of iron you're getting (heme vs non-heme) and as you can certainly overdose on iron then it's worth doing as humanbean says and getting properly checked and also mentioning that you don't eat meat.

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