Looking for help and guidance on starting T3 only

[ajs100uk]

Hi, I am looking for some help and guidance from you lovely people, having now run out of enough money to be able to buy meds/supps AND consult my private doctor (PD). You have been so helpful in the past

In March I saw a PD, he ran tests and diagnosed hypothyroidism (due to converting T4 to T3) and low cortisol. He prescribed metavive NDT as it has a slightly higher ratio of T3 to T4 than other NDTs and he said I needed the higher T3. I had bought T3 but he told me not to take it for now (this was back in March).

This is the first time I have EVER had a firm diagnosis or taken any thyroid meds (I am in my 50s). This is because my TSH (apart from a couple of times) has always been 'normal' and my symptoms have been ignored due to this.

Before starting any meds I had all the symptoms of hypo including chronic constipation, 3 stone weight gain for no reason since Dec 2015, tiredness, brain fog, palpitations, slow pulse, low basal temp, dry skin, puffy eyes, missing outer 3rd eyebrows, hair loss, swollen lower legs, irritability, and always freezing cold. I also have a large goitre.

The only treatment the NHS has iffered me is total thyroidectomy which I have not had.

The PD started me on 30mg (divided by 2 doses) and told me to increase by 15mg every two weeks, until symptoms improved.

Currently, I take 75mg metavive (equiv to 1 1/4 grain). I recently reduced to this from 120mg (2 grain) due to the following latest tests taken on 19/06/2017 by Thriva but same as NHS of same date:

TSH 0.005 (0.27-4.3)

FT4 27.1 (12-23)

FT3 7.8 (3.1-6.8)

T4 124.8 (64.5-142)

Anti-thyroidperoxidase antibodies 10.71 (0-34) from TPA 5.18 (0-34) in March

Anti-thyroglobulin antibodies 10 (0-115)

I have had no real improvement apart from, just recently on the 120mg dose, an almost complete reduction in longstanding leg swelling/maybe less dry skin but still flaking and a slight weight loss of 2lb.

I have been having a few palpitations and hot flushes. This is not new and the last time I could afford to consult my PD he said it is menopause/hypo related. I have had both of these symptoms prior to taking any thyroid meds and when I have been hyper and hypo previously (before seeing PD and under NHS only with no treatment).

I really want to try T3 only (which I have bought but have never used) but do not know where to start?

I believe It is the T3 I need but I do not think it is great having a high FT4 to get my T3 level up?

I take adrenavive II for low cortisol but no idea if it is working and I don't have the money to test again.

It is all a bloody nightmare and over the last few days I have felt so foggy/flat/not been bothered to do anything outside of my never-ending med sec work. It is even an effort to lift my arms and my tinnitus is raging

I am supplementing vit D, omega oil, Q10, selenium, magnesium, vit c, black seed powder, calcium, and good multivit. As per my previous posts, some of these I have to take lifelong due to having a gastric bypass which means I do not absorb sufficient amounts from food (ie the b vits, zinc, iron, calcium).

I had been taking 1000mcg sublingual B12 in addition to that in my multivit which has food levels but have stopped as my result from 19/06/2017 taken by NHS was:

Serum B12. 1799 (137 - 429) from Vit B12 402 (140-724) in March

Other results from the same date were:

Serum cortisol 102 (137 - 429)

Serum ferritin 115 (13 -150) from Ferritin 88.73 (13-150) in March

Serum folate 18.5 (3.9 - 26.8) from Folate (serum) 9.94 (3.89-26 in March

Serum calcium 2.35 (2.20 - 2.60) (on supplements)

Other blood tests from 19/06/2917:0 (by NHS):

Haemaglobin 113. (125 - 165)

Haematocrit 0.342 (0.37 - 0.47)

Red cell count 3.64 (3.8 - 5.8)

I was due to see an endo in April (after being referred in Jan), it was then changed to June and was then changed AGAIN to September! I give up with the NHS and have had no contact from them (the hospital or my GP) regarding the latest blood results

I have a CT colonoscopy this week, due to the chronic constipation, which I am not looking forward to

I do hope someone can guide me, in particular If T3 only would be best for me? How to take/what amount to take of T3? Whether I change to T3 immediately, or taper off the NDT, or add it to NDT?

Thank you so much

Ps apologies if any typos I cannot bring myself to read again

[silverfox7]

I think you reduced the NDT too much. I was told increase or decrease in quarter tablets and I found I had palpitations when ubdernedication. I would go up to 1 1/2 grain. I take mine all at once after I'd got used to taking the T3 in it as I kept forgetting the second dose. I have recently read though the suggestion to taketbe highest amount as the second dose. To me that made sense as T3 in our bodies is naturally at its highest in the early hours. I did try taking mine at night but missed my bedtime snack!

[ajs100uk in reply to silverfox7]

Thank you for commenting, much appreciated.

I reduced because I was concerned about my latest 'hyper' results (19.6.17). I want a high T3 but I do not want my FT4 over range to get it My TSH is also greatly suppressed.

My private doctor advised me to increase every two weeks based on symptoms. Doing this, I arrived at 120mg (2 grains) without much change in symptoms but ended up with a hyper result. I did not think it wise to continue on that dose.

Unfortunately, I cannot afford to consult the private doctor anymore, so do not really know what I am doing

I just want to feel better for the first time in my adult life, having had nearly every hypo symptom for over 30 years but no NHS diagnosis as 'they do not know' what is going on with me.

[silverfox7 in reply to ajs100uk]

Just been thinking about your kind reply. Results when in any form of T3 should be read differently. The first thing the Endo said when I said I had started on NDT was you do realise your TSH with. E suppressed and may even be zero, wish my present one knew that! FT3 should. Echigh in range and that FT4 can fall down to half way. I understand the reasoning behind that is that when your body realisesit is getting enough T3 then it doesn't store and excess of T4, just enough to tied you over if the T3 doesn't appear so thinking about it taking more NDT should take your FT3 higher but encourage your body not to hang on to as much T4.

What do others think?

[ajs100uk in reply to silverfox7]

Thank you

Yes, I totally agree, but I was worried as tsh was suppressed very low, T3 was over range but so was T4. This is what I did not want.

I would not be worried at all if T4 was only halfway through with suppressed tsh and high T3. I think that is where I need to be.

I would like to hear peoples opinion on my high frees with suppressed tsh (no hyper symptoms) and whether the reduction will hopefully give me low/suppressed tsh,mid T4, and high T3.

Such a minefield

[Saggyuk]

Hi there

Apologies, I can't help you in regards to switching over as no experience in the on you're on at the mo.

I would point out that although ferritin had gone up, your blood count still indicates you have iron anaemia and perhaps your body is on purposefully pushing iron into storage. This can sometimes be down to inflammation/infection.

Also, with your cortisol being low - have you had this investigated further? Low sodium and high potassium can occur with issues with adrenal glands and low cortisol - have you had these checked and addisons etc ruled out?

Blood sugar levels can often be unstable as well with cortisol levels so maybe worth a check of these also especially if not able to eat much?

[ajs100uk in reply to Saggyuk]

Yes, I am pretty sure the latest results indicate something and they were available on 20.6.17. to the hospital, and I would have thought my GP has seen them by now.

I have not heard a single thing from the hospital or my GP, so I assume they are not at all concerned.

All they have said in the recent past is to wait for the endo appointment. I have been waiting since January (despite being under one until Jul 2016 when I moved), my 'new' appt has now been rebooked two times and is now set for September. There has been no 'continuation of care' and I am back at square on with the NHS.

Not much else I can do. I feel burnt out and am trying to avoid getting stressed. I also have run out of spare cash to consult privately.