Thyroid UK

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Confused

I'm so confused!! At my last endo appt I was on 100levo and 20t3 but still had symptoms of aches and pains and fatigue and hair falling out although it was bearable and I could do most things. I just knew that I wasn't 100% and I could be better. My TSH was suppressed at 0.20 and my t4 was low at 11 something (the range started at 12, see previous posts) my t3 was in range but low in range.

My endo suggested coming off the t3 and increasing the t4. She suggested dropping 10t3 and increasing the Levo to 125 for one week then dropping t3 altogether and increasing t4 to 150 the next week.

Tried week one of dropping t3 by 10 and increasing t4 by 25 and noticed how tired I was feeling but did as I was told, by week 2 having dropped t3 altogether, felt dreadful. Swollen legs, ankles and feet returned, severe fatigue, brain fog and a 4lb weight gain. I panicked and took 10t3 again for two evenings and dropped t4 to 125 for three nights. Then last night took 20t3 and 125t4.

Today my swelling has gone down but I haven't a clue what I'm doing! My head feels all over the place and I feel anxious. Have felt a few palpitations and I feel it could be due to over medication rather than under.

The endo also gave me a script for Armour and I should receive these tablets tomorrow but I now don't have a clue what to take!!

If I go back to trying to reduce t3 and increase t4 I get horrible symptoms. How long does it take for t3 to come out of your system and for a t4 increase to take hold?

If i decide to try armour, this contains t3 so will I feel crap on this? Is it best to just stop messing around and take the armour?

So confused as to what to do. Has anyone else been in this boat?

Deb x

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I know I posted recently and I'm sorry if I am repeating myself here but how I feel today is awful and I'm just not sure which road to take now.

Debbie, you post as often as you need to.

I think reducing your T3 and increasing T4 when FT3 is low is extraordinary advice. TSH 0.2 is slightly below range but taking T3 often suppresses TSH <0.03. FT4 often drops because oral T3 bypasses the need for high levels of T4 to convert to T3.

T3 has a short life and is probably completely out of your system 48/72 hours after your last dose. I think it's the lack of T3 which has probably made you feel so unwell since your dose was decreased and if that's the case there's no need to worry that the T3 in Armour will make you feel unwell.

How much Armour are you prescribed? 100mcg T4 + 20mcg T3 is roughly equivalent to 1.5-1.75 grains.

Hi clutter, I too think the decrease in t3 has made me feel unwell and I'm just not sure now why the endo suggested trying this. She said that in the past, she has advised clients to do this and they have been made well. I completely understand that the t3 can suppress the TSH but I think this makes the endo wary. I understand the t4 will be low when taking t3 but I truly believe that the low t4 is the reason my hair falls out. I have noticed that when t4 drops out of range, it falls out. My iron and ferritin levels are within a good range now so it isnt this. I felt that I would feel well if we could get t4 and t3 within range, hence why I agreed with endo to increase t4, decrease t3 then stop it in the hope my t4 level would rise, the TSH would come within range and the t3 would pretty much stay where it was! But now I feel like I am just succumbing to numbers and trying to get everything within range to please the medical profession but it's playing around with my health instead!

She gas prescribed 2 grains of Armour for a 2 month trial. She has prescribed 2 grains because on 100mg Levo & 20t3, I still had symptoms. Do you think this amount is correct? should I take it all at once or in two stages?

Thanks for helping clutter I'm getting a bit panicky now as to what to do for the best.

Endo also wants me to have a chest X-ray as I have noticed a bit of swelling on my chest in the centre and she thinks my lymph nodes are swollen in my neck area so she wants me to gave a scan too. I'm sure that's nothing though.

Debsy, Levothyroxine can cause hair loss so it may be nothing to do with FT4 levels. I was shedding like a goat before I was on thyroxine and when I was over replaced and FT4 was >30. It took about 6 months after I was optimally medicated on T4+T3 to stop shedding but it isn't back to pre-Hashi days. Hairdresser says it is thinner and coarser but cuts well so it looks ok.

2 grains sounds about right. There's 18mcg T3 in that so about what you have been used to. Most people split their dose x 2 but some prefer 1 x daily. If you split dosed T3 do the same with Armour.

Hi Debsydoorknocker,

To completely get rid of the T3 and T4 from your body you would have to stop taking the Levothyroxine (T4) and Liothyronine (T3) altogether. The T3 has a half life of 2.5 to 3 days and the T4 has a half life of 7 days. This means that half the T3 is used up in 3 days and then another 3 days half is used up and so on until it is done. The T4 takes longer because it isn't as fast acting and is a precursor hormone that converts into T3. Therefore, it will be approximately a month of withdrawal of T4 and T3 before these synthetic hormones are out of your system.

Maybe, you should start the Armour now. I've just seen my endo this morning and he has prescribed Armour for me at 1 grain per day because I was on T4/T3 combined and even though my blood results have improved my symptoms have not. He originally started me on T4 after a lobectomy to remove thyroid cancer 18 months ago and gradually increased it until I was on 167.5mg per day. This high dose was not doing me any good and he gradually reduced the amount and introduced T3 and I have been taking 75mg of T4 and 20mg of T3. My TSH is seriously suppressed to stop the cancer returning and my Free T4 has gone up slightly and so too has my Free T3, my Free T3 was very low and is now 7.3, but he thinks I'm over medicated hence starting Armour from tomorrow. I will just be taking Armour thyroid from tomorrow and your endo should have made it clear what doseage you should take as it depends on your height and body weight. I've just read the Armour thyroid patient leaflet and it says that 1 grain contains 38mcg of T4 and 9mcg of T3 and should be gradually increased ever few weeks until a optimum dose is established, normally people need between 60mcg and 120mcg according to the patient leaflet. If I was you I'd ring my endo to check what starting dose he/she wants you to take and then go from there.

Good luck and if you need any help please don't hesitate to contact me.

Hi there

Thank you for replying with such useful info. I received my armour today and I'm going to start risking it tomorrow. I'm so stiff and achey today, bloated stomach and a strange vibrating feeling through my body. It's neatly 8.30 and I'm ready for bed!

I too am about to read the armour leaflet, it's long isn't it!!!

When she prescribed armour I was on 100t4 and 20t3 (adding up to 160) and still had symptoms so she prescribed 2 grains - to convert that, I'm getting 130 assuming the t3 is 3 times the t4. so....I'm assuming 2 grains will be ok to take?? What do you reckon?!

keep in touch, I'd love to know how you get on over the next few weeks taking armour, I really hope it's successful for you

Hiya,

Your symptoms are the same as mine and I'm needing to go to bed early but I'm forcing myself awake so that I will sleep through the night. I get the bloating after every meal regardless of what I eat and I get the strange vibrating tingling feelings worse on an afternoon when my morning T4 and T3 wears off. I'm hoping the Armour thyroid will be better for me because I couldn't tolerate the contraceptive pill and I had my doubts that the synthetic thyroid meds would do much for me. My endo is starting me off on 1 grain split into 2 doses and he wants to see me in 4 weeks to review my progress. Fingers crossed it works for both of us.

Regards your dosage, what did your endo recommend? I thought starting off on 1 grain was best and then to increase the dose gradually if more is needed. That's why my endo wants to see me in 4 weeks and he is keen to monitor my progress.

I'd love to keep in touch to review our progress and spur each other on. I'll send you a message in a couple of days.

Night, night and God bless for now.

That's what you call Endo-Logic. Born out of ignorance. If your T3 was low in range when you were taking T3, I dread to think what it's like without it!

It could possibly be that synthetic T4 doesn't suit you - didn't me - and that it's the synthetic T4 you want to illiminate, not the T3. If you can't convert it it pools and makes you feel ill. And it's more than likely that it's the levo that is making your hair fall out.

Take the NDT and have faith! It's not synthetic, so you won't get the problems that synthetics often cause, and it has all the thyroid hormones you need. Start low and build up slowly. I'm sure you'll be fine. But don't stress it. Cool, man! lol

Hugs, Grey

My FT3 has been just below or just above the bottom of the range for a few years.

I concluded that i had a conversion problem and my GP agreed to a trial of T3 5mcg if I reduced my Levothyroxine from 112.5 to 75mcg.

This made me feel worse, so i tried 10mcg T3. This didn't improve things, so i I went up to 20mcg T3.

This was an improvement, but not the significant loss of symptoms that i had expected from taking this much T3.

Also, the impact on my FT3 results was not significant - just above the bottom of the range.

After 6 months still struggling, i felt that i needed to try something different.

I had been reading about Reverse T3 which got me thinking. I also read a paper that suggested it was easier for T4 to pass the blood/brain barrier than T3.

Whether this is true, or not, was not that important. It gave me something to try.

I increased my Levothyroxine from 75 to 100mcg and, over the next 6 weeks, gradually reduced my Liothyronine from 20 to 5mcg, as and when i felt the onset of hyper symptoms (e.g. Trembling, too hot) as the increased Levothyroxine gradually took effect.

The effect was amazing. I now feel better that before i was diagnosed as being Hypothyroid.

My conclusion was that the extra T3 was probably turning into RT3, which is why it did not seem to have a significant impact.

MY FT3. Is still fairly low, but i am now relaxed about this (i do not have a fully working set of organs, so lower FT3 may be right for me) and my FT3 is near the top of the range.

I think this shows that the solutions are not always obvious.

No, yoursurname, T3 cannot 'turn into' rT3. RT3 happens when T4 isn't correctly converted into T3. The wrong iodine molecule is removed, for whatever reason.

You mean your FT4 is still near the top? Well, that shows that you are still not converting and you probably do have high rT3 for that reason.

Also, you cannot have been hyper with your FT3 at the bottom of the range. You may have had some other problem with the T4 you were taking but you weren't hyper. That is when the FT3 is over the top of the range.

But if it works for you, and you feel good, that's all that matters! Keep us up to date on your progress. It will be interesting to see how you get on.

Hugs, Grey

Thank you for the correction, Grey.

This makes it more of a mystery.

I originally assumed that i was not converting T4 to T3 and was surprised/disappointed that taking T3 did not make much difference to my low FT3, which crept up to just above the bottom of the range.

Reducing my T3 and increasing my T4 has made no significant difference to my FT3 level, whereas the FT4 crept up to 19.5.

I not going to get too worried about this, but it would be nice to know why I feel better physically and mentally as the result of increasing T4 and reducing T3, especially when i have relativity low FT3 (4.1 most recently).

Well, I don't know, but you still could have rT3 if you don't convert properly. And I think it's pretty certain that you don't as your T4 is higher in its range than the T3 in its. It should be the opposite way around.

Perhaps you didn't give the T3 long enough to work. It takes a long time, sometimes. You didn't go hypo over-night, so why would you get rid of your symptoms over-night? You were probably hypo for a long, long time before you were diagnosed.

I was on 75mcg T4 and 20mcg T3 for more than 6 months.

Some symptoms were reduced, but i continued to struggle both mentally and physically, lack of energy, poor concentration, tiredness.

When i increased T4 to 100mcg, i started to feel better after 2 weeks. Only then did I gradually reduce T3 to 5mcg over the following 4 weeks, while continuing to improve during this period.

I have been feeling remarkably well for around 4 weeks with no further change in doses.

Well, that's all that counts! Let's hope it continues.

Thank you for the correction, Grey.

This makes it more of a mystery.

I originally assumed that i was not converting T4 to T3 and was surprised/disappointed that taking T3 did not make much difference to my low FT3, which crept up to just above the bottom of the range.

Reducing my T3 and increasing my T4 has made no significant difference to my FT3 level, whereas the FT4 crept up to 19.5.

Hiya

Your pits is really interesting to read and I think this is what my endo may have been suggesting. She said that she had pug people on t3 before and they have felt better but still not right. She therefore told them to come off the t3 gradually, raise the t4 and she said this worked for them. She said she has never heard from them since as they have remained well.

I'm nearly two years into trialling various combinations and obviously getting really really fed up - I suffered for 2 - 3 years before being diagnosed so absolutely desperate to have at least 6 months of feeling well if nothing else!!!

Where is your FT4 on the scale? Are you high in range by any chance? How's your weight?

I'm going to trial the armour tomorrow and hopefully it will work but if it doesn't, I'm just going to go back to t4. Thanks again for explaining your position, it really helps

That should say 'POST' not pits!!! Lol x

Debsy, she SAYS she hasn't seen them since because they're now well, but it could be that they haven't been back because she made them so ill! These endos do like to delude themselves! lol

I am taking T3 only, therefore, my TSH is suppressed and my T4 is non-existant. My T3 is over-range. But this is the dose I need at this particular time. This scared the life out of my GP, and we had great arguements (he was all for lowering my dose when my TSH was only 0.45!) and eventually I just walked out, never to return. (Like your endo's patients! ha ha!) He was just too ignorant to be safe in the same room as me! lol No, I'm joking, but I don't have a gp anymore, I self-treat and dose by symptoms. Haven't had any blood work for about four months.

Since starting T3 only, I've lost about 50 kilos - don't know exactly because I stopped weighing myself when I hit 125 kilos - yes, I was a biiiig lady! Now my family are saying, oh, you're getting too thin! Don't over-do it. lol But I'm not doing anything. Just takin' the tablets! I eat what I want, when I want and as much as I want. But it's true, I've never had a big appetite. I just say, well I still can't fit back into the clothes I wore at fifty! I'm 69 now. 19 years being FAT!!! Sigh. Never mind, it's now that counts! lol

Ahhh, Greygoose, I'm so pleased for you. Out of interest, how much t3 do you take and where do you get it from? Message me if you cannot say in a post!!

My husband is convinced we will end up down the self medicating route. I'm just scared to take medicating into my own hands although I know full well that the medical profession are probably messing me about more than I would myself. I think we just have to get to that stage where we feel confident enough to look after ourselves. I have to say though, I think my endo is basically saying "try this, but if that fails, try this and if that fails, you have all the tablets to play around with!!" I do have faith in her, she is trying to help and I have to trust her until she gives me reason not to x

Hi Grey!

Thanks for responding. I received the armour today and I'm taking the first tablet tomorrow!! I'm not stresses anymore, I think I just had a moment but I'm ok now and looking forward to seeing what the armour does!

I've just responded to thyroid thief above, do you think I should just take the 2 grains based on what I've written or would you still start on half a tablet maybe (I've got 2grain tablets)

Thanks Grey x

Well, 2 grains would be lowering your dose, because it only contains 76 T4 and 18 T3. But you could take that for a week or so, get your system sorted out, and then increase by half a tablet. When I changed from T4/T3 to Armour, I started too low and it didn't do me any favours!

Anyway, it's great that it's arrived. Let us know how you get on with it.

Hugs, Grey

Yes, I thought it was maybe too low based on what I currently take. I'll take the 2grains and see how I get on, I'll let you know

Hi Debsydoorknocker

If you still feel confused, you might want to look at this article, particularly the bit about staying on the initial dose for too long. This helped me a lot when I transitioned. I started with 0.5 grain for a week, 1 grain for 2 weeks, 1.5 grains for 2 weeks, 2 grains for 4 weeks, until I reached my current dose of 3 grains. I went higher initially but got jittery and had to dial back a bit. I'm feeling really well on this dose but key was to introduce it slowly for me to allow any rT3 to clear.

stopthethyroidmadness.com/m...

Hopes this helps, I'm self-medicating and came to rely on the website and book a lot...

Marion

Hi Marion

Many thanks for the link and apologies for not replying sooner.

Can you message me as to where you get your Armour please if you wouldn't mind, I think I need more and if no one prescribes it, I'm stuck!

Do you have to go for blood tests for your GP and if you do, are they within range? I worry about self medicating and having to have tests for GP to see

HI Debsydoorknocker,

How are you doing on the Armour? I started mine last Wednesday and I've noticed a difference already. My brain isn't as foggy, I have more energy (I still get very tired but at least I can get through the day) and I'm sleeping better. Plus, the digestion issues are improving. Have you seen an improvement yet?

Hiya

Sorry for delay, we've been away for a few days and didn't have internet.

I'm so pleased you are feeling better. I'm afraid I feel the same as I did on 100t4 and 20t4 which is under medicated!! Fortunately I've had no reactions to armour so I'm pleased with that, I have read that some people get headaches, itchy skin etc! But I still feel tired, hair falling out, bloated stomach, aches and pains and am sighing again. I feel sharp enough in my mind. I am functioning ok but I know I'm not optimal. I've written to my endo today to see if I can go up 1/2 grain.

My doctor also called me in after receiving a letter from my endo saying she has prescribed me Armour and started waffling on about all sorts of stuff, like how they are governed by a committee or whatever (?!), it actually went over my head a bit and how Armour will not be something that can be prescribed, not to mention the health impacts that Armour has blah blah blah. I told her I'm not after an NHS prescription for Armour, I'm prepared to pay as I've tried everything else, not felt well enough and I just want to be well at whatever cost. She piped down after this.

Keep me posted on your progress

Hiya,

It sounds like you need to up your Armour thyroid meds. I take 2 x 1/2 grains per day, one when I awake and 1 in the afternoon. I was on 75mcg Levothyroxine and 20mcg Liothionine before I started Armour last week and I gradually went on this dose after being on Levo only for nearly 1 year. I feel like I need to be on another 1/2 grain but I'm going to see how I go for the time being and wait for my next blood test results when I see my endo next month.

As regards the problems you are having with your GP, I fear that I will have the same issues and they won't prescribe it for me even though I feel better on Armour. I'm going to have to organise a meeting with my GP to justify my case and tell him that it's dearer for me to stay on the synthetic T4/T3 combination than just have Armour. I might have to do a little bit of solicitor name dropping for medical negligence, especially, as I know that my thyroid cancer could have been diagnosed over 4 years prior to when it was diagnosed. My GP surgery doctors kept telling me it was laryngitis or swollen glands when in fact it was cancer. They've cut my life chances by ignoring me and poo poo everything I've told them about my health, my endo surgeon told me life expectancy was 10 years two weeks after he'd removed the cancer and got it tested. Those words will never leave me and I keep thinking to myself that I need to pursue a medical negligence claim but I've been so ill and I don't know if I could get a cheap or free lawyer.

Let me know how you get on with your endo.

TT xx.

This is just so sad to read and makes me so angry. You are clear of cancer now though aren't you?. I think you should most definitely play the "medical negligence" card because that is exactly how they have behaved.

They took years to diagnose my hypothyroidism , usual story, offered me antidepressants, said it was the menopause blah blah. I gave up going in the end, until my husband forced me to go as most of my day was spent asleep! My TSH was 68 when finally diagnosed. Why can't they be more in touch with the patient? My records would state that I probably only stepped foot in the doctors surgery about two or three times in a decade, but suddenly I was appearing more regularly with every hypothyroid symptom under the sun!! Nearly two years after being diagnosed, I still feel like a hypochondriac turning up moaning about my symptoms, I would actually even doubt myself if it weren't for this site reminding me that I'm not a hypochondriac, I have a condition that isn't being treated correctly!

I've asked Marion (above) if she can advise me where she buys her Armour. I'm of the frame of mind now that the GP's haven't got a clue and it's all about the money. Well, I won't let them neglect me and I'm afraid I will probably have to take charge of my own health. After 2 years, I know now when I'm under medicated or indeed over medicated, stuff the blood tests!!!

Hiya Debsydoorknocker,

How are you doing?

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