Puzzled by results, what am i doing wrong ? Ple... - Thyroid UK

Thyroid UK

139,074 members163,217 posts

Puzzled by results, what am i doing wrong ? Please can you advise me.

Gillybean1 profile image
8 Replies

Hi Everyone,

I have Hashimotos and had reduced my NDT by a 1/4 grain down to 2 1/2 grains in split doses over 8 weeks ago, as the last blood tests indicated too much T4 and high RT3 despite still having gut symptoms and fatigue. I intended then to add in some T3 between those doses to try to improve gut function and even out energy peaks and drops. I have not started T3 yet.

My puzzle is that this test after the reduced NDT is showing higher T4 and T3 why is that? The only thing i did different is i usually cease meds 24hrs before a test, but this time as i was feeling so crappy i ceased meds 12hrs before the test, in line with some advice given here. Would that have made such a difference to the results that follow. I would welcome any thoughts please.

Mar 2018 on 2 1/2 grains NDT in split doses

TSH <0.005 (0.27 -4.2)

TT4 115 (66 -181)

FT4 22.60 (12 - 22.0)

FT3 7.86 (3.1 -6.8)

TPO 107 (<34)

TG 18 (<115 )

Cortisol saliva waking 15.400 (6.00 -21.00)

Cortisol " 12noon 1.730 (1.50 -7.60 )

Cortisol " 16.00 3.420 (0.00 -5.49 )

Cortisol " Bedtime <1.5 (0.00 -1.99 )

Results Dec 2017 taking 2 3/4 grains NDT in split doses

TSH <0.01 (0.27 -4.2)

TT4 107 (59 -154 )

FT4 21.9 (12.0 -22.0)

FT3 6.4 (3.1 -6.8)

RT3 31 (10 -24)

TPO 75.6 (0 -34)

TG 12 (0 -115)

B12 1304 (197 -771)

Folate >20 (>2.9)

Ferritin 74.7 (13 -150 )

Transferrin % 34.01 (20.00 -55.00)

TIBC 48.19 (41.00 -77.00)

Iron 16.39 (6.60 -26.00)

CRP 1.8 (<5.00)

Vit D 78 (50 -200)

Oct 2017 also on 2 3/4 grains NDT

TSH <0.01 (0.27-4.2)

FT4 22.6 (12-22)

FT3 6.2 (3.1-6.8)

My blood pressure tends to be slightly low 110/69 pulse 66, and standing 116/71 pulse 70 (for adrenal check ) My weight has dropped from 8stone to 7stone 4 as the NDT had been increased and i was hoping that the gut pains would cease in accordance to that dose increase, that i would be able to eat more calories and therefore my weight would not have dropped. It has been stable at this weight for 9months. My pulse does not race, i do not sweat only when i eat and cant digest, and im not anxious, so not typically overmedicated. My body temp since starting NDT 3 years ago has gone from 35.5 pulse 60, to 37 (or shade under) pulse 66-70.

I was expecting my Cortisol test to be worse as it has been in the past, and as the stresses of illness and financial losses continue.

Does anybody think that reducing the NDT back down to say 2 grains but then adding in split doses of T3 starting with 2.5mcg to help my gut ,might be a way forward? Im still cold too.

Any thoughts greatly appreciated,

Every best wish ,G.

Written by
Gillybean1 profile image
Gillybean1
To view profiles and participate in discussions please or .
Read more about...
8 Replies
shaws profile image
shawsAdministrator

When we take other than levothyroxine (T4 only) the blood tests cannot correlate as T4 and blood tests were both introduced together.

NDT contains T4, T3, T2, T1 and calcitonin so when we take NDT it is how 'we feel' on a certain dose that signals if we're on sufficient.

This may be helpful:

web.archive.org/web/2010112...

This doctor's patients only took one daily dose of whatever thyroid hormones they were taking. He only prescribed NDT or T3 for his Thyroid Resistant patients.

Gillybean1 profile image
Gillybean1 in reply to shaws

Hello Shaws,

Thank you for your reply, im still processing Dr Lowes information.

Ive long suspected a cell uptake problem....difficult to prove.

I posted because i was concerned/influenced by the blood-tests-Dr comments about hyper result,and i still feel v unwell......back to the drawing board !

Every best wish ,

G

shaws profile image
shawsAdministrator in reply to Gillybean1

It is amazing what we have to do/read and try to make sense of it in order to recover our health. Such a pity that those we expect to know everything about dysfunctional thyroid gland seem to know nothing except the TSH which they keep somewhere in the range (we need it below 1 or suppressed). They are also swift to prescribe other medications for the remaining symptoms when we actually need more or different thyroid hormones.

Gillybean1 profile image
Gillybean1 in reply to shaws

Yes, even more alarming and frustrating that when i did find an endocrinologist familiar with trying combination meds and insistant on a full thyroid panel ,and would consider doing DIO2 on NHS ! depending on the results, submitted blood tests accordingly to be discounted except for TSH by the local hospital six times.

On my 7th attempt at his request, i did the blood test early am,got home rang the hospitals phlebotomy head biochemist saying i had given blood for the 7th time could she reassure me that all the request will be actioned. Her reply was 'no' you dont need these done 'normal TSH'. I asked her why did she have the right to overide a consultants request, she replied 'because i know more'.........she said it was costly too.I said its costly to the NHS me having 6 wasted appointments without the relevent info for the consultant to work from.

I explained Hashis, fluctuating TSH,treat the symptoms, titre meds all to help me be less of an NHS burden in the future. She said 'i will do them this time'.

I sent her a package of up to date info gleened from yourselves here......i can but hope.

I understand from my GP that this lady is currently actioning all consultant requested blood test on the other 4 of us in this area with this disease at the moment.

On follow up with my endo i asked who is in charge here,? why dont you do something about your requests not being actioned? He said its been going on for years, he had officially complained but no change.

Unfortunately i cant see that consultant anymore as he mostly deals with the diabetic clinic and that was 4years ago or more.

Every best wish G.

Ps i know Dr Lowe prefered 1 daily dose of whichever medication, but i thought it didnt necessarily work for all folk hence P Robinson's book, or those on this site who add a little extra T3?

G.

shaws profile image
shawsAdministrator in reply to Gillybean1

It is not right that if doctors ask for specific tests that there is an over-seer who decides not to do these. We know that most believe that TSH and T4 are sufficient but we, the sufferers, know differently.

I believe Dr L wrote a foreward on P Robinson's book. Paul Robinson found that worked for him and some of his readers. Does Paul still have his help site up and running? I also know some people didn't improve on his method.

T3 in divided doses may work for some but according to Dr Lowe who was also a scientist and researcher stated that when we swallow T3 it is absorbed quickly. (we know many believe T3 'peaks') but the effect of that one dose lasts for between one to three days.

It saturates our millions of T3 receptor cells and it's job then begins. He also had studied Thyroid Hormone Resistance. His patients who took NDT also took one daily dose.

Once in the cells the work of that one dose then begins and sends out 'waves' and the effect of that one dose lasts between one to three days. Also we aren't 'free' if we split doses, - i.e. we take one dose and eat an hour later: don't have to carry tablets nor make sure stomach is empty.Life is consumed with taking separate daily doses. and I doubt it would always be at the same time. Dr Lowe also advised the same for NDT.

I am not trying to persuade people who are free to dose as they wish but to advise struggling members that they don't need to split doses as rumours abound about the T3 peaking etc.

I don't feel unwell and take one daily dose and am then free. Remember we have a lifetime of taking thyroid hormones and stomach has to be empty before and after taking doses.

Of course, everyone can do as they please and what they feel suits them.

Gillybean1 profile image
Gillybean1 in reply to shaws

Hi Shaws,

I appreciate what you are saying. For myself starting off on the road to recovery i started with the AM daily dose, got to 1 1/2 grains and started feeling jittery but still with many symptoms, now although my Cortisol tests looked ok im sure that inability to increase AM was and is due to poor sleep from constant chronic gut pain stressing my adrenals. To enable me to eat something albeit small amounts i opted for the afternoon dose, hoping the gut would improve ,settle and that good sleep would return . Not so far and im very underweight. I follow the protocol GF,DF,SF,no alcohol,tap water for 5years now ,tried all grain free, FODMAPS all for several months at a time. Ive also experience the delights and charms of a gut Prof who leaned in very close and said 'what do you mean you want your life back....this is your life ,get used to it'.....thankfully my GP removed said person from their referral list.

I totally get what you mean about 'being free' dose wise, its definetely another low grade stressor what with timings of all the other 'bits' we need to get in! I havnt read everything Dr L wrote as yet but so far intuitively what he says 'feels right', and now just writing back to you, you've made me think back to my single AM dose time, that i was able to eat better then.......hmm maybe i need to rethink things, all the good things i have been doing seem to have lead me to a possible peptic ulcer by the feel of things this week. The 'stress cycle' im sure there are many of us on this site who know the 'too sick to work/ how will i manage financial/ survive' one.

Re P Robinson, yes his site is still going and he also does some useful YouTube talks about circadianT3.

I thank you again for taking the time to reply to me,

Every best wish to you, G

shaws profile image
shawsAdministrator in reply to Gillybean1

Dr Peatfield always stated that adrenals should be helped but another Doctor, Dr Skiinner, said that if and when on an optimum dose of thyroid hormones (he also prescribed NDT) the adrenals heal themselves. So what suits some people doesn't always suit others and P Robinson finally found what helped him to recover his health.

Dr Lowe discovered, as a teenager, that he had Thyroid Hormone Resistance and led him to T3 alone and he could then help fibro patients and others who had thyroid hormone resistance as well as others who didn't.

He himself took 150mcg T3 daily in the middle of the night.

Gillybean1 profile image
Gillybean1 in reply to shaws

Thank Goodness we are all beautifully different.

Dr P prescribed A Glandulars for me which i couldnt tolerate, i asked him if i could be the otherway round, thyroid-pulling down- adrenals, he said 'yes, more unusual but possible'.

I understand he is not so well himself these days, but what a lovely, passionate, ,commited man. Without Peatfield, Skinner and Lowe, i wonder who on the 'inside' will have to leave to pick up the gauntlet.

I wonder if Hilary Clinton has written any positive articles on her thyroid journey and currently on Armour and physically looks totally different/better,vital over the last few years.

It really needs a very vocal public figure to speak out and catch attention.

Every best wish ,G

You may also like...

Please can you look at my results and advise?

before. TSH 2.6 (0.27-4.20) FT4 16.3 (12.0-22.0) FT3 4.2......

I finally have my results!!! What do people think is wrong?

mIU/L (Range: 0.27 - 4.2) (previously 2.25) Free T3 3.9 pmol/L (Range: 3.1 - 6.8) (previously......

Please can you help with confusing test results?

Thyroid Hormones TSH X 0.22 mIU/L (Range: 0.27 - 4.2) Free T3 4.8 pmol/L (Range: 3.1 - 6.8) Free...

Please can you advise me on my recent test results.

Medichecks: TSH 0.+16 mlu/L. Range: 0.27 - 4.2 Free T3 3.76 pmol/L. R:...

Blood Test Results - please advise

too. TSH 0.30 (0.27 - 4.20) Free T3 4.30 (3.1 - 6.8) Free T4 15.7 (12.0 - 22.0) Morning Cortisol...