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what do you make of this thyroid result?

(27 Posts)
Castasunder Fri 04-Nov-16 18:39:01

Was here a few months ago with a borderline thyroid result of:
TSH: 5.66
T4: 12mol

I've had the test repeated and now I'm:
TSH: 8.55
T4:13mol

Doctor prescribed 25mg of levon-something.

Does this sound right? She said my antibody test (perioxidase?) came back normal so it isn't autoimmune - or at least she doesn't think it is.

I hate the idea of taking a tablet for life, or that it could cause all sorts of issues for me including liver problems etc. Is there any way to treat it naturally? I read about natural desiccated thyroid but the doctor had never heard of it.

TIAsmile

GourmetGold Sat 05-Nov-16 00:53:42

Google 'Iodine Loading Protocol'. Also website and books of Dr Brownstein.

My blood results weren't bad enough to be given Thyroxine (what you've been prescribed).
I had awful symptoms after my Thyroid switched from over active to under active overnight. My doctor had prescribed medicine for my over active Thyroid, but could offer me nothing when things went the other way.

I followed the Iodine Loading Protocol, which I found online and in a book called the 'Iodine Crisis'. I still am taking all the supplements a year later, within days of starting I felt a lot better.

You have to read how to follow the Protocol carefully and make sure you take everything listed, as your body goes through a process of eliminating toxins pushed out by the high strength Iodine ...I had a few months of skin rashes, apparently the toxin Bromide being expelled from my body. I had to drink several glasses of warm water with natural salt every day to help eliminate the Bromide, I still drink it every day.

Thyroxine is not good for you long term, short term I'd not worry, do you feel better taking it?

From everything I've read, Thyroid problems seem to be caused by Iodine deficiency, we all really need it, but there's hardly any in our diet. It used to be added to bread, but was removed around the 1940s. There's a tiny amount added to table salt, but it's hardly anything.

Castasunder Sat 05-Nov-16 01:13:03

Thank you so much. That's a whole new world you've just explained to me!
I just got diagnosed today so haven't taken the meds yet...

GourmetGold Sat 05-Nov-16 01:21:17

I don't know much about the blood tests.
The NHS focuses a lot on the 'TSH' results I think, but many people don't think they are the whole answer.
My limited knowledge is that they believe the higher the TSH the more Hypothyroid you are, it's better not to be over 1, so yours is quite high.

I understand it's worrying to be given medication (I'm not keen on Pharma pills), but there are dangers of letting Hypothyroidism to continue untreated, so it's good that your doctor has prescribed you something, though Thyroxine doesn't work for everyone, something like not being able to convert T4 to T3 (or other way round!)

GourmetGold Sat 05-Nov-16 01:23:38

Good Luck! In the USA there are Iodine doctors you can go to for treatment...shame not here.

Castasunder Sat 05-Nov-16 13:42:37

Are there any other posters who've been started on 25mcg with these results?

OhTheRoses Sat 05-Nov-16 13:51:44

No, but I had graves, had thyroid removed which obvs made me hypothyroid. I have taken 100mcg for more than 25 years with no problems at all. My last TSH reading was just under 1.

Have a look at the British Thyroid Foundation website. I think you probably do need the levothyroxine and probably should have started it sooner.

Thyroxine mirrors a natural hormone you don't have enough of.

Castasunder Sun 06-Nov-16 15:32:40

I wondered if anyone had tried a natural alternative? Feel uneasy taking a med for life, although I'm grateful it's even an option. Thanks to all for replies so far! Really helpful x

OhTheRoses Sun 06-Nov-16 15:39:15

It's part of discovering you aren't invincible cast. It's a feeling that passes but very upsetting at the time. Levothyoxine is safe, works and clinically very sound indeed. It just outs something back that your body isn't making. Give it a go and try not to worry. I don't even think about it now in spite of being v unhappy about it initially. Subsequently I had a lovely wedding, two children and have lived life to the full. X

pklme Sun 06-Nov-16 16:19:39

I'm on 25mcg and having a blood test to see if I need more. I'm interested in the dietary things- I'd like to help myself out naturally.

Castasunder Mon 07-Nov-16 19:37:37

Thank you - yes it's definitely a shock and that invincibility thing drives home. I've had 37 years of saying ' N/A' whenever I had to fill out any kind of medical form. Just goes to show.
Anyway is it normal to start on 25mcg with a TSH of 8.55?.

Shurelyshomemistake Mon 07-Nov-16 19:44:01

25mcg is a very low dose. If you have clinical hypothyroidism being on thyroxine is not 'a bad thing long term'.... your body depends on thyroid hormones and without any you'd be in a coma/ dead!

I think natural dessicated thyroid is made from pig thyroid glands. I'd go with the tested, prescribed stuff personally...

BlackSwan Mon 07-Nov-16 19:57:20

My 6 year old takes double that. Hillary Clinton takes Armour (which is the desiccated pig thyroid version). Some people have better results with it, but because it's natural, the concentration may not be consistent.

OhTheRoses Mon 07-Nov-16 20:48:22

I'm not sure I'd want to follow Hilary Clinton's footsteps.

I think 25mcg with a retest in 6-8 weeks ago sounds v sensible. See how you feel then and keep an open mind about it being increased if necessary.

pinkpostitnote Fri 11-Nov-16 07:41:25

Whoa!

I'm so worried by many of the responses here! I'm actually very cross.

Thyroxine is simply a hormone you NEED. Your thyroid is struggling to make that hormone. It's an endocrine issue, such as type 1 diabetes (which cannot be cured or treated by diet) or Addison's disease.

Yes we need iodine and it is hard to get and there are suggestions that we fortify again, but simply take a multivitamin and you will be fine (pregnancy ones have it as it's very important) as does yoghurt, milk (organic has much less) and oily fish.

Too much is just as bad as too little. Hence caution over fortifying again.

If you developed type one diabetes would you question taking insulin?

Get this book to help you understand: https://www.amazon.co.uk/Thyroid-Disorders-Understanding-Family-Doctor/dp/1903474191

Thyroxine is t4. The thyroid makes t4 and some t3. The t4 gets taken round the body and is then converted to t3 in the liver and muscles. T4 lasts a week. T3 lasts a couple of hours. The body can be well ON THE RIGHT LEVEL of t4 as it just converts to t3 - but therefore needs more t4 than healthy people.

Dessicated pig thyroid has more t3 than humans make naturally. Many people are ok; some really aren't, but in all honesty they probably weren't on a good dose of t4. T4 is more stable and predictable. They've just introduced a 12.5 tablet too for extra tweaking. The tsh is a good stable measure of your body's levels of t3 and t4.

You will be less able to conceive and more likely to mc if your tsh is over 2.

A very few people can't convert to t3; they do need t3 to live but have to take it regularly. You don't go down any of these avenues yet if at all. They are actually trying to create a combo t4 and long life t3 pill at the moment.

Take the 25 and keep being monitored; you'll probably need to go higher than that. And you now get free prescriptions too!

I've had hypothyroidism for 20 years. I've learnt what is and isn't right. If I didn't take it I'd be dead.

Hermano Fri 11-Nov-16 08:02:10

I hope no one minds me joining this thread, especially to seek pink'so view.

I was having problems conceiving, TSH measured at 5.11 so doctor at assisted conception unit asked my GP to put me on 50 mg of levothyroxine.

That was in April. My TSH was tested a few times since and went to 2.6 in June, back up to 3.1 after I forgot to take tablets for a few days in July, 1.3 in Sept.

I then conceived, I'm currently 11 weeks pregnant.

TSH was tested recently as 0.5.

GP thinks this is fine. I'm no longer in touch with the fertility people as I moved house and their IVF failed, it was privately paid and they've sent me my notes and closed my file so I can't call them back to discuss bloods.

I'm concerned my dose is too high and I'm continually dropping. Anyone got any ideas?

GP is clueless on this and I've only just booked in and midwife isn't concerned either. Not sure if I'm being OTT or the people I'm currently in contact with just don't know much about this as none are experts.

pinkpostitnote Fri 11-Nov-16 08:15:54

hermano I had all sorts in pregnancy going on.

I think that is fine; I can dig out what the book says (linked below). Baby needs your thyroxine till about 24 weeks (can't quite remember) after which you will probably need to drop down. How long ago was test?

At hospital at scan you should see an obstetrician who should be able to advise.

pinkpostitnote Fri 11-Nov-16 08:23:35

You have some thyroid still working; it grows during pregnancy hence your tsh has dropped as your thyroid has grown.

I went as high as 13 by 11 weeks and low as 0.02 tsh by 19 weeks in pregnancy; 4 year old currently playing happily. He did have low birthweight and I had a small placenta but that could have been other factors as seems common in my family and I didn't know I had asthma too. All caught up now!

I see no harm in getting another test 3 weeks after the last if you are concerned. A tweak of 25 every other day would be slight. But I'd stay as you are for now; 0.5 is where I am now and well.

pinkpostitnote Fri 11-Nov-16 08:27:05

This is by Toft; he used to be an endo in Edinburgh.

http://www.thyroiduk.org.uk/tuk/guidelines/Lothian%20Guidance%20for%20Diagnosis%20and%20Management%20of%20thyroid%20function%20in%20pregnancy.pdf

And wrote the bma book I've linked to below.

pinkpostitnote Fri 11-Nov-16 08:34:28

From Toft book.

My son is as bright as a button given the chaos I had. I was on a brand that is now withdrawn as it wasn't correct. So I swung from hypo to too much after the hospital gave me their thyroxine, which was the right tablet strength but then I was on too much (despite me trying to explain!)

However he's completely fine. Very socially bright and good at problem solving. (I teach SEN so I tune into things.)

sparechange Fri 11-Nov-16 08:37:22

Good grief there is some dangerous advice on this thread.

Please, please disregard everything Gormet gold has said. It is absolute nonsense and totally dangerous.

For starters, you are already on thyroxine. Your body has been producing it since you were a 12 week fetus and will carry on producing it until you die.
Unfortunately, but in common with about 1 in 4 women, it is struggling to produce enough. TSH is your bodies 'whip' on your thyroid to make enough. When it is 1, that's one crack of the whip to get it to make enough. When it's 8, your body is cracking the whip 8 times to get it to make enough. It shows your thyroid can't make enough on its own
So you've been prescribed a tablet form to top up what your body is making

25mcg is a very small dose but might be enough to help improve symptoms. You should start feeling less tired within a few days and other symptoms (which you might not even realise are linked to your thyroid) will improve in a few weeks.

Please take the medication. It is very simple. First thing in the morning is best. I keep mine next to the bed with a glass of water and take the tablet as soon as I wake up. It has no impact at all on my life and to be worried about having to take a tiny tablet is crazy, especially when it can improve your health and life so much

pinkpostitnote Fri 11-Nov-16 08:39:44

Just to
Add, iodine is important in pregnancy hence the advise to eat the daily portions of milk, yoghurt and fish.

Pregnacare has iodine as does ferroglobin.

I attended a British thyroid foundation talk on pregnancy when I was 20 weeks. The obstetrician said the main important vitamins were vitamin D and iodine.

LOTS of info and research on the British thyroid foundation. Thyroid uk is good but the BTF fund research and work with endocrinologists as they are the charitable wing of the British thyroid association (of endocrinologists in the U.K.)

pinkpostitnote Fri 11-Nov-16 08:41:54

http://www.btf-thyroid.org

They have a quarterly magazine which is sent out if you join. You can call volunteers too. Lots of recent research on iodine in diet and affecting young women/ child development etc. It's only slight (a few iq points) but important in areas where dairy and oily fish isn't a regular part of diet.

pinkpostitnote Fri 11-Nov-16 08:45:56

Hi five sparechange!

Also, read the thyroxine leaflet carefully, how to take and drug interactions.

I recently discovered amytriptline has a mild interaction in some (I was so spaced out!) but was only listed on the thyroxine leaflet not the amytriptline one.

sparechange Fri 11-Nov-16 11:42:39

Hermano

The normal range for TTC and pregnancy is 0.25-2.5 so you are well within the normal range on your current dose.

The baby doesn't start making its own thyroxine until about 12 weeks, so takes some of yours until then. The normal advice is to up your dose by 25% when you get a BFP and to get your levels checked. Your doctor can look this up on the NHS website and I'm really surprised they don't know this already.

It is really very important to keep an eye on the levels. Despite being very thyroid-savvy AND upping my dose, during my last pregnancy, my TSH level got to 3.5 and I miscarried at 10 weeks. My consultant said that with a TSH level of 3.5, around 70% of pregnancies will end in miscarriage...
You should push for testing every 6 weeks, and flag it with your midwife at your booking in appointment, so you can be referred to an antenatal endocrinologist if neccessary

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