New prescription of T3/T4 combo and now TSH suppressed!! Worried and would appreciate any advice please on recent blood results.

[W3ndy2159]

Hi. I've recently (4wks ago) been prescribed 10mcg of T3 to my 125mcg T4(levo). I'm happy to say it has made a huge difference to my health as symptoms have improved immensely and I feel almost human!. For the past 12years I've been on levo only and never felt well regardless of dosage.

I have asked my doctor for an increase of T3 because :-

I take my levo at night and I still wake up tired in the morning and have hypo symptoms. I take T3 upon waking at 6am, and about an hour after taking It I feel great! Lots of energy, brain fog lifted, muscle weakness and pains in my hands gone, etc etc. this lasts for a few hours then I slump and symptoms come back. I was hoping to take another 10mcg T3 at approx 1-2pm to see if I can be symptom free until bedtime when I take levo.

Dr insisted on thyroid function test before increase. He has now asked endo's permission to increase/advice due to TSH being suppressed. Endo told me he would only prescribe T3 unless TSH gets suppressed!!! Now I'm worried he'll take me off it despite me feeling great and symptom free :-(.

T4...... 15.......(9.23).......... Aug 2013

..........22.......(9.23)...........Dec 2012

T3.......4.9......(3.50-6.50)...Aug 2013

..........4.8......(3.50-6.50)...Feb 2013

TSH....0.21....(0.55-4.78)...Aug 2013

..........0.7......(0.55-4.78)...April 2013

..........0.10....(0.55-4.78)...Feb 2013

Despite TSH being suppressed, to me it looks like it is improving or am I reading results wrong??? Would increasing T3 and reducing T4 be an option? Really hoping to stay on T3 because of the positive benefits I have now.

Thanks for reading this long winded question and hopefully replying

Wendy

[debjs]

I am no expert but the Dr I see privately said that any T3 containing replacement will supress TSH. I am on Armour and mine is 0.05 and my GP and NHS endo are happy with that. Dr Toft's book says that some people are not well unless TSH suppressed. Might be worth showing your GP that.

[W3ndy2159 in reply to debjs]

Thanks for reply debjs. It's reassuring to know Dr Toft says some people don't feel well unless their TSH is suppressed. I can say in this instance I am one of them. I will certainly refer to Dr Tofts book if Dr or endo want to stop T3 due to suppressedT3. Thank you

[babycatcher7572 in reply to debjs]

i might show this to my gp too...my tsh is the same as yours debjs but he was worried about osteoporosis etc the other day. I dont think he knows that much...just glazes over

[W3ndy2159 in reply to babycatcher7572]

Lol babycatcher 7572 do you think GP's only qualify if they pass the "glazed eyes - roll their eyes skyward and big sigh" course? Roflmho!

All these replies to my question are brilliant and armed with all this info I feel sure I'll be able to stay on T! hope so. Hope you are well?

[marram in reply to babycatcher7572]

Wendy, if a GP is worried about Osteoporosis because of suppressed TSH, a bone density test would be a useful tool. Then, if there is a problem, you can always supplement to avoid the danger of bone loss.

An avoidable risk of a fracture is still somewhat safer than reducing your thyroid medication and giving you almost certain sky-high cholesterol, breathing problems and congestive heart failure in later years, as my GP did to me by reducing mine.

My TSH is now 0.02 and I feel better than I have in 32 years. Some feel well with a TSH of over 2, but when mine was 1.4 I felt like ****.

How wonderfully different we all are!

Marie XXXX

[Moggie]

Have you ever split your 10mcg's, taken 5mcg's in the morning and then the other 5mcg's abouth three oclock in the afternoon. Do you keep both your levo and your T3 away from food as much as possible as your ft3 is still fairly low at 4.9. Did you take any T3 on the day of your blood test.

Moggie x

[W3ndy2159 in reply to Moggie]

Hi Moggie I didn't take levo the night before blood test or T3 that morning as I read it can affect results. I try to stay away from food at least 2 hrs before and after taking both. Haven't tried to split dose into 2x 5 mcg doses as I have 20mcg tablets, and I find it difficult to split into 2x 10mcg doses so will probably find splitting into 4 even harder! I will try tho as I think having 2 doses daily will benefit me more than 1. Thank you for reply your thoughts are very interesting.

[Moggie in reply to W3ndy2159]

Have you got a pill cutter? It isn't to fiddly with one of those. I used to stop taking my T3 for two days before a blood test but I am not recommending you do this just tellling you what I used to do. I also used to have my bloods taken as late as I could if I wanted my TSH to be higher as the earlier you have bloods taken the lower the TSH will be.

Moggie

[W3ndy2159 in reply to Moggie]

I've just invested in a pill cutter and pleased how easy it cuts. I will have a go with cutting 20mcg into 4 as you suggest I'd heard about not taking meds on the day or evening before blood tests but didn't realise TSH is suppressed in the morning and more beneficially to have bloods drawn later. I'll bear that in mind in the future thanks moggie x

[Stourie in reply to W3ndy2159]

I think that the tsh is higher in the am . Get your bloods done as early as possible

Jo xx

[Moggie in reply to Stourie]

Yep your right - got it the wrong way round that time didn't I - sorry.

Moggie x

[Moggie in reply to W3ndy2159]

Sorry about the mistake with the timings of the TSH tests - its your FT4 test that is higher the later you have bloods taken.

Moggie x

[Clarebear]

I am also on Armour and am feeling well with a suppressed TSH of >0.02. My endo and thus GP are also happy with this, as long as my fT3 is in range. If my TSH was in range then my fT3 and fT4 would be below range and I would feel dreadful.

I think Carolyn has a document about suppressed TSH which you might find useful - hopefully she will see this

I'm glad you are feeling better - sounds like the T3 is what you needed. If you find this endo won't comply then you may have to find a new one - some are ok with a suppressed TSH. Xx

[W3ndy2159 in reply to Clarebear]

Hi clarebear. It's good to hear your doctor and endo are happy even though your TSH is suppressed. Hope mine do too as I really feel good with T3 added and will be disappointed if it is stopped.

Where will I find Carolyn's document about suppressed TSH please?

Nice to hear you are feeling well on your medication. Hope it continues for you

Thanks for reply

[PinkNinja in reply to W3ndy2159]

Hi. Sorry, I have only just seen this. Updates aren't showing at the moment

Firstly your TSH is low, not suppressed. Suppression is usually considered as below 0.03 or thereabouts. Under these circumstances, where your TSH is low but not suppressed, there is no increased risk provided you are not exhibiting symptoms of hyperthyroidism.

Here is the link to a blog Rod wrote about a paper stating that TSH is not a good indicator or thyroid status

healthunlocked.com/thyroidu...

I have this paper which states that there is no increased risk for a low TSH but unfortunately there is an increased risk for TSH below 0.03.

endocrinology.org/press/pre...

I don't have a paper that says it's ok for TSH to be suppressed but I think it may be mentioned in the Pulse article to GPs by Dr Toft. Louisewarvill has a copy of this so you could message her to see if she could send it to you. Also he states on page 88 of his book 'Understanding Thyroid Disorders', which is published in association with the BMA;

"In some people, as sense of wellbeing is achieved only when fT4 or TT4 is raised.... and TSH low or undetectable. In this circumstance, it is essential that the T3 level in the blood is unequivocally normal in order to avoid hyperthyroidism".

I hope this is of some help.

Carolyn x

[W3ndy2159 in reply to PinkNinja]

Thanks Carolyn I'm on holiday now so will look at these links later and comment. Thank you so much for this info x

[ianessex]

Hi Wendy ! First couple things i can see is that the lab range for your tsh starts at 0.55,,, now mine starts at 0.35 so on that basis your tsh wouldn't be so bad .plus you say back in Feb your tsh was actually lower than it is now,, 0.1 . Next thing is your ft3 has hardly increased and is no where near top if range, neither is your ft4 so seeming as the main players,, the ft3 and 4 are well within range.. I would say that anyone with decent thyroid sense won't be concerned about your tsh ,, esp as it's only indicative at very best.

[W3ndy2159 in reply to ianessex]

morning Ian, I'm just worried it will be stopped because of TSH level. Am I right in reading that it is going in the right direction and what sort of level would dr/endo be concerned enough about to stop treatment? Would reducing T4 make the difference on TSH levels, and leave me on T3? As it is since taking T3 that I have felt any improvement in my health/symptoms?

Thanks for reply

[cookiecole]

Hi could you tell me if you reduced your t4 when starting t3 or have you always taken 125mgs of t4 thanx gill

[W3ndy2159 in reply to cookiecole]

Hi gill yes my T4 was reduced from 150mcg to 125mcg when 10mcg T3 was added. I have never felt well on T4 only, even when I was taking 300 mcg daily! I have only seen any improvement in my symptoms since taking T3. My endo only prescribed 5mcg of T3 but my doc said he couldn't get 5mcg tabs as they are unlicensed in UK. He only gets 20mcg tabs and told me to take 10mcg but didn't reduce T4 further!!!! Not sure if that is significant?

Thanks for reply x

[cookiecole in reply to cookiecole]

Hi Wendy thanx so much for your reply, I also take 150 t4, so I will drop that to 125 and take 10 t3, and hope I feel better soon, do you take 5mg twice a day? Thanx gill

[galathea]

Your tsh is suppressed at 0.1? It's 5 times higher than where mine has been for the past decade or so.... Mine is always 0.02. It was at 0.02 when I was on t4 10o plus 20. T3. And it's the same now I am on 4 grains of natural thyroid.

The only time it went as high as 0.1 was when the endo stopped my t3... I felt so ill that he conceded I needed the t3.

Any time the doc mentioned reducing my dose due to low tsh I used to reel off the signs and symptoms of hyper thyroid ism.... And say I would consent to my meds being lowered if I exhibited any hyper signs..... At this point the doc would give up and leave my dose well alone. Signs of hyper are... Tremor in hands, Eating but losing weight, Heal intolerant, unable to sleep.... . There are loads more........

Good luck!

[W3ndy2159 in reply to galathea]

thanks Galathea this really heartens me to hear your story. I'm feeling a bit more positive now. I was convinced it would be withdrawn and I would be plunged back into the abyss of hypothyroidism. not a happy thought. I feel now, after everyone's comments I have the ammunition to fight my corner and justify why I need T3. It is so true the saying "knowledge is power". Since finding this site, I have used my new found knowledge to get my endo to prescribe T3 and felt a huge improvement in my health. all thanks to everyone here x

[Stourie in reply to W3ndy2159]

Since starting t3 and stopping the t4 my tsh is 0.01 and my dr and endo are quite happy with that. I am taking 80 t3 and with not taking t3 the night before the blood test my t3 reading was 3.7 so I think that I could probably take more t3 and still be ok. My t4 is now 3.2 but as I don't take t4 it doesn't matter. Hope that helps a bit.

Jo xx

[Hansaplatz]

Have you thought about taking the T3 before bed or mid your sleep cycle to see if that helps you feel more refreshed when you wake up? Of course you might be right that taking a 2nd dose could be worth trying anyhow, but just a thought if your current dose taking time could maybe be optimised.

[dsgarden]

A book I read, by endo Dr K Blanchard, talks about the direct potency of t3 and suggests getting it compounded into a time release, so you could take it once a day, but get the benefit all day long.