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[Wrensong]

Hi Chi Chi, like Babyjane, I am long-term hypothyroid, on Thyroxine (T4) & Liothyronine (T3), but I am not an expert by any means.  I agree with Babyjane, your free T4 does look a little low, but I think the TSH would usually be higher if your body needed the gland to produce more thyroxine.  Your free T3 result shows you are converting the thyroxine into the active form the body can use & this result is the same as my last free T3 although I have to take Liothyronine to achieve a result above the bottom of the ref range. 

If you are on HRT or are oestrogen-dominant in perimenopause, then I think the lowish T4 could be because oestrogen raises thyroid binding globulin, though I am not sure how this works in detail.  The endocrine system is horribly complex and the various hormones affect each other, so at times of hormonal upheaval it can be very difficult to know just what is going on.

I also have many of the symptoms you describe (burning feet, easily disoriented, easily exhausted, very dry skin, tinnitus, constipation, poor memory) but all except the last two have only developed since perimenopause began so for me, these seem to be related to gynae hormone deficiency as I am now post-menopause and they have not improved.  So, though I don't know where you are as regards menopause, it seems possible that your symptoms could be related to this, though you are right many of them do occur in hypothyroidism too.  I think the bloating & puffiness could be down to either gynae hormone issues or thyroid. 

I do wonder whether low B12 might account for some of your symptoms though - burning feet, exhaustion, constipation, poor memory, numbness, tinnitus, low mood and apathy, and wonder whether it might be worth asking for this to be checked if you haven't already.  I'm so sorry I can't help more - you must be feeling pretty awful with this lot going on.  I do hope you manage to get to the bottom of it.

[babyjane]

like Babyjane, I am long-term hypothyroid, on Thyroxine (T4) & Liothyronine (T3),

Wrensong I am also on T4/T3 combination treatment as I do not convert T4 to T3 properly.  May I ask what dose you take out of curiosity?  I would have sent you a PM but I am not sure if you can send them back yet.  I take 100mcg thyroxine once a day and 5mcg Lio twice a day.

[Wrensong]

Hello Babyjane, like you I am a poor converter  .  Had seen from your past posts that you & I had a lot in common & was often tempted to join so we could compare notes, as this can be a tricky condition to live with to say the least!  At the moment I take 62.5/62.5/75 mcg T4 (ie 75 mcg 2 days out of three) with 2 x 5mcg T3 daily, but this has long been a work in progress.  Last TFT results were in my lovely Endo's words "perfect", but still don't feel anything like as well as I need to & since then my HRT has changed, which has previously required adjustments to dosage.  Won't say more here as don't want to hijack Chi Chi's thread, but please do PM me when this becomes possible (sorry, am an ignoramus about these things as this is my first forum) .

[Wrensong]

Sorry Babyjane that should read 62.5 mcg two days out of three  - this morning's T3 has obviously not yet made it to my brain!

[Wrensong]

Stellajane, this is why it would be so useful for we hypothyroid patients to have known what our optimum TSH was before we developed thyroid disease, when of course, it is unlikely to have been tested!  That said, I wonder whether the optimum level changes depending on our life stage or other circumstances.  As it's said a healthy thyroid changes its output second by second according to the body's needs, there is really no replicating this with bulk daily doses of Thyroxine & if we need it Liothyronine, is there?  The truest words ever said to me on the subject came from a Neurophysiologist: Thyroxine is a poor substitute for a healthy thyroid.  Unfortunately many doctors have never been taught this & many patients struggle to become symptom-free thinking their failure to thrive, is really their failure.  On the other hand, there are patients who do seem to do very well on Thyroxine, so I wouldn't wish to scare anyone just diagnosed - there is every chance they will be lucky with the treatment.  I am eternally grateful for the development of the two synthetic hormones & we would all be in dire straits without them, but for some of us it can take years to realise & accept that there may be a limit to how close to optimal health these otherwise wonderful meds can bring us.

[Wrensong]

Should perhaps have added that the endocrine system being so complex, the same probably applies to HRT - it may not be a cure-all for most of us, but if it improves our lives beyond what they can be without it, then that can only be a good thing.  The difficulty comes in trying to ascertain when a medication is as good as it's going to get for us, so that we can make whatever other adjustments we need to our lives and get on with them without striving for a perfect fit we may never attain.

[Wrensong]

Stellajane, glad to hear HRT has helped you.  I wonder, given what you say about symptoms pre-HRT, whether you are hoping to stay on it for life.  I avoided it for 10+ years (FH breast cancer) which were largely wasted due to severity of symptoms, but when my Endo encouraged me & my Gynae said "you are not your mother and you need to have a life" I realised that enough was enough.  I agreed to start it on condition use could be indefinite, barring good reason otherwise, as I didn't think my body would stand a return to menopausal symptoms of that severity at an older age, if they recurred on withdrawal.  So, having taken the plunge & got partial relief of symptoms, I'm glad I did and try not to think about how I would cope if obliged to stop HRT at some point in the future.  Lovely GP was cautious, but understood & supported me, though after I had started HRT, said 5 years max - to my shock, having agreed term to be indefinite with Endo.  Just recently diagnosed with mild osteopenia, and treatment for now is to be HRT (& Vit D), so think this may mean I will be permitted to stay on it longer term.  Good to talk to another hypothyroid lady & hear your positive experience of the two types of medication.   I hope you continue to do well on your regimen.

[Peroxideblader]

I'm having a battle with what I think is a thyroid issue my doctor took tests last year only tsh and t4 my tsh ok but my t4 was very low she said results were normal though as tsh wasn't raised. Likes been said she wouldn't refer me to endo as there is no issue she said but 5 family members have thyroid and auto immune disorders and it took them 9 years of being ill to eventually be diagnosed. My problem is my symptoms match thyroid and peri so I don't know if to have private tests done for my thyroid first or try hrt and if that doesn't help go back to thyroid issue. My crippling issue that's wrecking my life is the inability to get to sleep til 4am every night for the last 3 years I don't think I'd last another 4 months.  I have had a lump in my neck for 5 years that grown quite a lot and I'm waiting for a biopsy for lymphoma so I really need the sleep and other health issues dealing with as I'm not physically strong enough to fight anything right now or 4 hours sleep nightly..so thyroid or hrt??? God knows

[Annie0710]

Blue horizon are a reputable online company for full thyroid panel

[Peroxideblader]

Thanks thats the one I've found its  £99 for thyroid and vit d too then  £35 to get a nurse to take the bloods at hospital which is worth it to get the full screening..shocking the NHS don't do the full test but heh ho.I think I'm getting that test first then take it from there

[Annie0710]

They do deals every so often, I got mine for £66 or something like that and my nurse I've struck up a rapport with did it for me for free

[babyjane]

shocking the NHS don't do the full test

they do but it is a postcode lottery. Mine is done for my consultant, but it really depends which consultant you are with and which primary care trust.  If we travel a 40 mile round trip to get my bloods done at the hospital where I see my endo they do the full test for his clinic.  However if I have my bloods done at the local hospital to be forwarded to his clinic the lab only do the TSH which means my appointment is then a waste of time for my consultant and a waste of time and petrol for myself going to the appointment as he doesn't have the full picture.  I therefore do the 40 mile round trip and then again a week later for my appointment 

[Peroxideblader]

I don't mind using my savings if it gets the proper tests I'm sick of being told my results are normal when there's so obviously is an issue . My ex sister in law is a retired nurse maybe she can take my sample ...

[Annie0710]

There is also an option of doing it yourself, almost like a diabetes blood test where you squeeze blood but I think that's more tricky.  You want a proper test first time instead of hearing back there wasn't enough blood

[Peroxideblader]

I agree I don't want anything to go wrong so I'll get a nurse I think....I'm ordering test tomorrow so fingers crossed I'll find eliminate one issue at least or find that's the issue and not peri. I really hope it's not thyroid I know how long it took my cousins to get their balance correct level wise...