Hit a snag... Advice please

[AleB]

Since my last post, I have been really ill (undermedicated), raised the levo by 12.5 per day to 100mcg, felt ratty, cold then started to feel better only to find 4 weeks into this dose change my heart rate was way too high at 91. Endo said to take 4 x 100 and 3 x 75 which would be roughly the same amount I was taking before but one day would be 12.5mcg levo more. Was told to keep T3 at 1.25mcg x 2 per day! As I am paying for all private tests and the Endo, I didn't want to waste my money on a blood test in between medication changes. I'm tempted to stick with 87.5mcg levo increase the morning T3 to 2.5mcg of liothyronine and just take 0.625 lio at 2pm! I don't want to annoy the endo, as I think he may write to GP to advise discontinue T3. I can't cope with the pain and fatigue again, yet I don't want the disturbing heart symptoms.

My last bloods on the 25th Feb were:

TSH 5.29 (range 0.27 - 4.2)

FT3 3.74.(range 3.1 - 6.8)

FT4 16.5.(range 12 - 22)

I am due to zoom endo on 28th April, planned to get bloods on the 20th April

Thanks for any advice. X

[Lalatoot]

If you are getting bloods done on 20th April then you can't really change anything at the moment - that is if you want your bloods to reflect your current position. With any change in dose levo or lio T3 you need to leave a couple of months before a blood test to allow for things to settle and knock on effects to occur.It took me 2 years of gradually changing levo and lio doses - one change of either at a time - until I got to a combination I was happy with.

[AleB in reply to Lalatoot]

Yes, the endo has had me going back to him every 5 weeks including a blood test at every appointment. It's taken a while to understand what my body is telling me, I'm getting there, moreover how I feel irrespective of what the bloods say or what the medical professionals think they should be. The past couple of months I have thought about going it alone, not just because of cost but primarily even the medics are guessing, albeit badly. My quandary is, do I cancel his appointment inform my doctor I wish to revert back to levo dose prior to T3, and try and source T3 for myself? I will now be seen as a middle aged hormonal hypochondriac... other than the gp referral letter for the endo, I don't bother with the gp.

[DippyDame]

Looking at your labs above...Your FT3 is abysmally low.

It looks as if your T4 to T3 conversion is poor

Your plan to increase T3 seems sensible

With such a low FT3 how could he justify discontinuing your prescription!

The heart needs a lot of T3.

Your TSH level is too high to suggest overmedication.... they focus on TSH.

You are undermedicated and this endo needs to look at both your labs and your symptoms together, and realise this.

You know your own body better than anyone else!

In my opinion, if that's the best advice on offer you are not getting value for money....it is not helping.

You may find that you can test privately using ( discounted) sources listed on TUK for less than this endo charges

thyroiduk.org/help-and-supp...

Just a few thoughts!

[AleB in reply to DippyDame]

Thanks for your advice, whenever Levo is added I feel pretty rubbish... completely rubbish converter, despite gf and dairy free for over 3 years, no alcohol no caffeine, took up yoga (when I am functioning) over a year ago, all other vitamins are carefully monitored. This is the second endo he is retired NHS, previous one was private but still had to get a gp referral... So my referrals are spent now as far as the go is concerned. I can hold the dose that I'm on for a couple of weeks, then get bloods, a starting point again, see where I go from here.

[shaws Administrator]

I am one person for whom levothyroxine was awful.

I had to diagnose myself with a TSH of 100 and GP had already phoned to tell me that I had no problems and my test results were fine!

Like many members on the forum, we probably had never heard of hypothyroidism unless members of their family had already been diagnosed

Levothyroxine (T4) gave me severe palpitations but liothyronine (T3) resolved all of symptoms. I now take T3 (Liothyronine) only.

I know exactly how to read my results and I go mainly with 'how I feel' on a particular dose.

I have recovered my health through being a member of TUK and it was started by Lyn Mynott who set up Thyroiduk.org.uk.

Your TSH is too high - the aim if 1 or lower.

FT3 too low and should be nearer the top of the range.

Many members take into their own hands how best to recover their health.

T3 (liothyronine ) is the 'Active Thyroid Hormone' and we have millions of T3 receptor cells and brain and heart have the most.

T4 is inactive and has to convert to T3.

When having a blood test for thyroid hormones, always make your appointment ahead so that you can get the optimum results and earliest appointment. It is a fasting test (you can drink water).

We don't take thyroid hormones before a blood test - but get the earliest blood draw and take hormones afterwards:-

Make the appointment for blood draw weeks ahead - always get the very earliest. Don't take thyroid hormones before blood draw but take them afterwards. Always take tablets with one glass of water so that you can swallow well,

[AleB in reply to shaws]

Thanks Shaws, can I ask how you knew to go T3 only? How did you approach it?

[shaws Administrator in reply to AleB]

I was extremely fortunate to read Dr John Lowe's articles and he lived in USA but was a researcher, doctor, and expert in T3 (liothyronine).

He studied hormones whilst a young person due to suicides happening within his family and he knew the devastation/shock it caused upon the whole family and friends.

He was also an Adviser for Thyroiduk.

He would never prescribe levothyroxine as he stated that it became No.1 prescription due to Endos/doctors being paid *in USA' to prescribe. Before that it was NDT = natural dessicated thyroid hormones given from 1892 onwards. No blood tests from 1892 was necessary as all doctors were knowledgeable about NDTs and symptoms and it saved many lives. It was withdrawn about a year or two ago in UK by those 'supposed to be experts'.

It left many people who had recovered from their symptoms on NDTs and who felt well, desperate to find out where it was possible to source privately.

We can really do without all of this stress when we're well on a particular thyroid hormone, be it T4, or NDT or T3 alone.

I tried NDTs but it was T3 alone which resolved my symptoms.