Switching Thyroid meds. : Hi all, I'm thinking... - Thyroid UK

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Switching Thyroid meds.

123happy profile image
26 Replies

Hi all,

I'm thinking of seeing my GP this week to see if she will prescribe NT or Armour, does anyone know if we can get this on prescription in the UK. I don't think I will be successful. I'm still tired and my weight is steadily increasing, I wonder if I have a conversion issue.

Last bloods were 6.01.2014.

Serum TSH 0.08 m u/l Normal range : 0.2 - 4.5

Serum free T4 20 pmol/l. Normal range 9 - 21.

My GP won't increase meds anymore. I'm still tired. These are the only results I have, this was after a bad bout of anemia, no longer anaemic, had a full hysterectomy and now on HRT. I'm tired of being tired. Lol. :(

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123happy
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26 Replies
Clutter profile image
Clutter

123happy, it's impossible to tell whether or not you're converting without testing FT3. Your TSH is low and your FT4 ideally placed for good conversion at the top of the range, so your GP is correct in not increasing your Levothyroxine.

You could ask your GP to prescribe some Liothyronine (T3) to see if that helps with your symptoms. Your Levo will be reduced by 25mcg for every 10mcg T3 prescribed. NDT and Armour are not licensed for UK use so many GPs haven't heard of it let alone will agree to prescribe it.

Have your ferritin, vitaminD, B12 and folate been checked recently? Ferritin needs to be 70-90 and the others high in range.

123happy profile image
123happy in reply to Clutter

Thanks very much for the information. I will ask her about liothyronine. I find it hard to get a T3 test as it's expensive, last test I was in the middle, iron levels are great now I'm no longer having monthly's. As for others I will ask for a full panel and see if she will agree. Xxx

marmaris profile image
marmaris in reply to Clutter

If what you say is the ratio ie to reduce Levo by 25mcg for every 10mcg of T3 would you say it is correct for me, now being on 50mcgs Levo (Endo reduced down from 100mcgs) and 30mcgs of T3 (Endo upped from 20mcgs to 30mcgs)?

Clutter profile image
Clutter in reply to marmaris

Marmaris,

They are just guides. They'll work if someone was on the right dose of T4 and it is reduced to introduce the equivalent amount of T3. If the person was undermedicated and their T4 is reduced to introduce the equivalent amount of T3 they will still be undermedicated and will probably assume the T3 isn't helping them.

You've been on 50mcg T4 + 30mcg T3 long enough to gauge whether you feel over medicated but if your symptoms continue you may be undermedicated and need to increase either your T3 or T4. If you decide to increase T3 by 10mcg because you feel under medicated then don't reduce your T4 further.

marmaris profile image
marmaris in reply to Clutter

Ok thanks for that Clutter. I have only just started on the 30mcgs so early days was on 20mcgs. Will keep at T4 50mcgs will not reduce and I think I will see how I go with the T3 upping if necessary.

Coastwalker profile image
Coastwalker in reply to Clutter

Hi Clutter.

I am due a visit to my Doctor very shortly, how well does the Liothyronine T3 treat the whole thyroid ? I'm only on T4, Levothyroxine and still not quite right, but Doctor says will not up it any further, would Liothyronine T3 have the same impact as taking NDT (Natural Desicated Pigs Thyroid.) ? Would it then help also to cure (more than just T4 would do on it's own,) dry skin, cold hands and feet and hair loss, which still have not been cured on T4 alone. ? (probably due to me not completely converting T4 to T3 problems.) :S

Clutter profile image
Clutter in reply to Coastwalker

Coastwalker, You need to establish whether you are optimally dosed on T4 before assuming you have conversion issues. Low FT3 is more likely to be due to under medication rather than conversion problems. Can you post your recent thyroid results and lab ref ranges and how much T4 you are currently taking?

Why has your GP decided he will not increase your T4? Surely he must prescribe as much as required unless your TSH is suppressed and your FT4 and FT3 above range indicating you are over medicated and hyper?

If your continuing symptoms are due to low FT3 adding some T3 will be beneficial. It won't help much if your symptoms are due to T4 under medication and your T4 is reduced to add in some T3. You'll still be under medicated and won't feel much benefit from the T3.

Some people can't tolerate synthetic T4 and T3 and find NDT better. T3+T4 combination is working for me so I'm not rocking the boat in order to try NDT which might be better :)

Coastwalker profile image
Coastwalker in reply to Clutter

Many thanks Clutter, saved me from making a fool of myself at the Docs.

I don't feel I am optimally dosed up on T4, I still need a slight tweak up on the T4 Levothyroxine, but Doc said she would not up my T4 any more as she had consulted with someone above her, I am now on 125 Levo daily and take it at night on an empty stomach and 4 hours away from calcium, iron and HRT. (Which made a big difference at that time and got rid of the awful brain fog, it just lifted almost the next day or two, that was also when I was able to dance and exercise and it did not hurt.)

My latest FreeT4 is now 18.3 (9-24 range) I started at 13.1 (17 months ago)

" " TSH is now 0.64 (0.2-4.5 range) I started at 6.48 (+) (17 months ago.)

I still have :-

Embarrassingly cold hands,feet and insides, especially in winter.

Do not sweat, (but before, I did so quite a bit,)

Eyes still dry and tired, a slight hurt/burning and dull feel to them and puffy top lids, (Tests done, but nothing found.)

Hair still breaking off and some bits not regrowing.

A few pins and needles in hands and fingers, much less now, but still there.

Would love to be on the NDT even just to try, doctor was interested in it and said I was the 3rd person to ask about it, she was worried about sourcing it and for an ongoing supply, without interruption.

Good luck in working me out Clutter, 'cos I wish I could ;)

Just want to get back to normal, whatever normal use to be. :)

Pleased to hear you are happy on both synthetics, you say NDT might be better for you, so have you managed to get completely rid of all your thyroid symptoms on T3+T4 or do you still have some symptoms lingering with the synthetics. ?

in reply to Coastwalker

Just one thing Coast - pins & needles in hands- have you had B12 tested? J :D

actually two! - hows your ferritin? (brittle hair) & biotin helps too J :D

thyroiduk.org.uk/tuk/treatm...

Coastwalker profile image
Coastwalker in reply to

Hi spareribs :)

Yes have just looked at my bloods tonight and B12 was on the low side at 370, Japanese keep theirs up over 500 I have read many times to ward off Dementia and Altzheimers, I have both of these in our family so we bought ourselves some B12 (under tongue tablets,) but then found them to be the wrong ones (cyanocobalamin,) we have carried on hoping they were working, well we thought they were.

Unfortunately my ferritin was never taken, I must remember to mention this to my Doctor with the hair connection, maybe she will do the ferritin blood. thanks spareribs.

Ferritine - is that the iron one ? I always get my folate and ferritin mixed. Is it the Ferritin that has to be over 70 ?

in reply to Coastwalker

If Doc won't up the dose all we can do is optimise the effect maybe?

Yes B12 over 500 is good (it gets excreted anyway if too much)

ferritin is stored iron - range here is 20-250 ug/L - often folk say over 70, whats yours? (too much isn't good either) J :D

PS my daughters are taking biotin for hair growth (I did say if they stopped dying it that would help!) x

Coastwalker profile image
Coastwalker in reply to

Thanks for the ferritin is stored iron reminder, my ferritin blood was not done. :( but will ask :) and must remember the biotin. :) X

Marz profile image
Marz in reply to Coastwalker

Coastwalker - you must read the website

b12deficiency.info/signs-an...

Your B12 is far too LOW. It needs to be around a 1000 to prevent cognitive decline in mature people ! Also when taking B12 you need to be taking a GOOD B complex that includes Folic Acid. B12 and FA work together in the body. Ferritin is stored Iron - so when your body needs some it goes to the store cupboard in the liver and takes some to keep Iron at a good level. Some people can have Iron Anaemia.

These things are NOT included in a FBC and must be requested separately - Ferritin - Folate - Iron. Once you are taking B12 the results are worthless as they give skewed results.

You will read on the website that only about 20% of your B12 result will be available at a cellular level where it is needed - hence the result MUST be at the TOP of the range.

On the website there are 47 pages showing you how to inject B12. We can buy it here over the counter so I have a jab weekly or more if needed :-)

Sorry to be a nag-bag !!

M x

Coastwalker profile image
Coastwalker in reply to Marz

Sorry late reply, no not a Nag Bag Marz, just a helpful Nag Bag ;) :)

I have written down your notes (the bloods) as a reminder also good way of describing the iron store cupboard.

We were taking the wrong B12 cheap 'C' pills, so now when I get chance will buy the Methylcobalamin ones. need to find the best value ones. Don't fancy the injections unless necessary, have been using the B12 Patches, when I feel the need, so much going on at the moment with others, we have not been sorting our own lives out, but now you have given me a nudge, thanks M it has woken me up. Must remember (Plus good B complex too.) :)

Speak soon NBM ;) :)

XX

Marz profile image
Marz in reply to Marz

:-) :-)

Coastwalker profile image
Coastwalker in reply to

One more late evening/early morning silly question spareribs, :O how long does/should ferritin/iron in your body get stored for or is everyone different. ? :)

in reply to Coastwalker

Sorry i've no idea how long...

I just think the body tops the Hb level up from the ferritin store (which is why Hb it isn't really a good indicator) J :D

Coastwalker profile image
Coastwalker in reply to

:) Thanks to your prompt spareribs, I have ask for a ferritin blood test and have bought some Biotin, hopefully that should get me sorted ;)

Clutter profile image
Clutter in reply to Coastwalker

Coast, your bloods look good although your FT4 could be higher. I think there is room for a 25mcg increase without suppressing your TSH. Lay on the symptoms and tell the doc you want an increase and tell her if she isn't allowed to prescribe an increase you would like a consultation with her senior colleague who presumably is.

If that doesn't work you can ask for referral to an endo to sort out your continuing symptoms. That will take months, however. I'd take the easy option and take the extra 25mcg and see whether it resolves the symptoms. Alternatively, buy some T3 and add to your T4.

Most of my problems were caused by over replacement of T4. Things are pretty much sorted apart from minor tweaking required here and there. A couple of weeks ago I reduced T4 because I was struggling in the heat (I even broke into a slight sweat) and had to take me socks orff. The past couple of days I've been cold and socks are back on. Temperature control seems to be the remaining issue apart from building fitness and stamina.

Coastwalker profile image
Coastwalker in reply to Clutter

Thanks Clutter,

It didn't help that I had my appointment with a stand in Doc who wanted to lower my Levo :O under my own Docs instructions, I said I'd come to to ask for an increase as I felt I was almost there, (a few fibro symptoms now only slightly presenting.) So I felt lucky to escape with my present levo dose amount still intact, I also mentioned about preferring NDT to T4 to help spread the word and thankfully remembered to get my new results which were:-

FreeT4 = 18.7 (9-24)

TSH= 0.05 (0.2-4.5)

Been dealing with a lot of stressful things recently concerning close family members, running around, hardly stopping to catch my breath and unintentionally missing meals, I started to have palpitaions on the day of my Doctor's visit, but did not mention it, I decided to cut levo down by 25 to see if I was over dosed, but two days later felt I was going back down with more symptoms brought on, so upped levo back to normal and now after just two doses feel much better and almost normal again, well as normal as I can get ;)

Like you reduced your T4, because of the heat, I'm sure your body does tells you when you are doing wrong or right. Pleased to hear that you are almost sorted :)

I have asked to be tested for ferritin, (thanks to spareribs,) due to hair problems. Stand in Doc was surprised I hadn't already been tested for it.

What do you make of my new levels Clutter ?

FreeT4 = 18.7 (9-24)

TSH = 0.05 (0.2-4.5)

Clutter profile image
Clutter in reply to Coastwalker

You don't look to be undermedicated, Coast, but your FT4 could be higher. If you increase your FT4 this would do it but will also further suppress your TSH. The argument to use with doctors who panic about atrial fibrillation and osteoporosis is that you accept the potential and very slight risk and offer to have an ecg and Dexa scan to monitor the risk.

Coastwalker profile image
Coastwalker in reply to Clutter

Thank you Clutter, it's good to have reassurance, I think I will just fight to keep my present Levo dose of 125, as today I feel quite good, even after an up hill killer of a bike ride yesterday, :) also lots of sunshine over the weekend which I'm sure helps with the vitamin D and bones, no hypo symptoms or palpitations either since a couple of days ago, it must have been just stress, don't normally get stressed as usually cope quite well and let things go over my head, this time, thinking we were to loose a loved one, I had a knot in my stomach which lasted for several days and I was just on the go racing around, wondered if it affected my adrenals and my Levothyroxine dose ?

Clutter profile image
Clutter in reply to Coastwalker

Coast, sounds like you had a lively weekend :) I consider myself to be optimally medicated now but I don't handle stress well at all. Just reading something that annoys me can bring on palpitations for some time, so I do tend to avoid strife when I can.

Coastwalker profile image
Coastwalker in reply to Clutter

:) Note to one's self, avoid stress in future. ;)

Clutter profile image
Clutter in reply to Coastwalker

Yes indeedy, it's good if you can.

123happy profile image
123happy

Hi thanks.

I will now have to wait for my referral to an Endo. Then I'll start pecking thier head. Lol.

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