Advice Needed - Recently started T4/T3 combo

Afternoon everyone. Just after some advice please. Apologies in advance for the longwinded story below.

Since 2011 I had felt generally unwell ,after repeated sinus infections, vertigo, swollen lymph glands I was diagnosed with under active thyroid in June 2015 I was started on 25mcg levo. This did provide an initial improvement and gave me some energy, dose was upped to 50mcg 6 weeks later. At this point I noticed severe arthritis type aches and pains in all my joints, along with excruciating headaches. Had an eye test to rule out anything to do with vision causing the headaches.My GP then tested my hormones and said I was well and truly in the menopause, of which I was unaware as had no symptoms at all apart from the aches and pains , He said my fsh measured 84 when normal range is to 13 ,and suggested this was the cause of the pains and suggested I try hrt. I was 47 years old at this point. I tried HRT and it made no difference at all. Then he suggested Prozac which I refused. He then suggested gabapentin which made no difference.He then upped levo to 75mcg to see if that would help, as by now I was feeling generally rubbish as I had a the beginning of my journey . This didn't improve things so was referred to an endo through work private healthcare. I've had two ACTH tests, one whilst on hrt as he forgot to tell me to stop taking this before the test ( I had to point out to him so at that point lost faith in him but thought I would press on and try for the t3 trial), and the second test after being off hrt for 6 weeks. He increased levo to 100 but again no difference. At my last visit he prescribed a trial of T3 5mcg to be added to levo 50mcg one day, and 75 mcg levo the next. First week didn't notice anything. Second week felt a lot better, no headaches, aches and pains definitely reducing. Even my husband said for the first time in a long time he could look at me and know I wasn't in pain. This is the third week and since Sunday I feel miserable again, just very emotional, tearful and aching again. I'm due to have bloods done in 3 weeks, then see the endocrinologist the following week. He said if the T3 helps , which he doesn't expect it to, he will write a compelling letter to my GP to see if NHS will prescribe. . His comments state" it does seem unlikely that her thyroid function is the explanation of symptoms. We will assess her clinical response to therapy after an interval of no less than 3 months in accordance with the European Thyroid Association Guidelines"

I'm hoping that these past few days are just a blip but just fearful that it is one step forward two steps back.Would be grateful for any advice.

Most recent results, thank you for your patience , moira :)

31/8/2016

FT4 26.47 pmol/L (normal range 12-22)

Ft3 5.9 pmol/L (normal range 3.1 - 6.8)

TSH 0.027 mU/L (normal range 0.27 - 4.2

May 2016 Vitamin D =77 ( range 50-250)

11 July 2016 Short Synacthen Test

The basal level needs to be above 100, 30 min sample needs to be above 500 nmol/l with an increment of at least 200 nmol/1

Basal 468

30 Mins 815

60 mins 905

LH 11.4 U/L

follicular 2.4 - 12.6

Ovulation 14.0 - 95.6

Luteal 1.0-11.4

Post Men 26 - 135

FSH 21.1 U/L

follicular 3.5 - 12.5

ovulation 4.7 - 21.5

Luteal 1.7 - 7.7

Post Men 26 - 135

B12 723* ng/L (199-663)

Folate (serum) 13.9 ug/L (4.6-18.7)

Pathology

WBC 4.9 X 10^9/l (4.0-10.0)

RBC 4.56 X 10^12/l (3.8-4.8)

HAEMOGLOBIN 154* g/l (120-150)

HCT 0.44 ratio (0.36 - 0.46)

MCV 97.0 fl (83 - 101)

MCH 33.8* pg (27.0 - 32.0)

MCHC 347* g/L (315-345)

RDW 12.5 (11.0-14.0)

Platelets 222 X10^9/L (150-410)

Differential

Neutrophils (abs) 2.5 10^9/L (2.0-7.0)

Lymphocytes (abs) 1.5 10^9/L (1.0-3.0)

Monocytes (abs) 0.5 10^9/L (0.2 - 1.0)

Eosinophils (abs) 0.30 10^9/L (0.02 - 0.50)

Basophils (abs) 0.11* 10^9/L (0.02 - 0.10)

Erythrocyte sedimentation rate 13 mm/HR (9-19)

Biochemistry

Sodium 141 mmol/L (133-146)

Potassium 4.0 mmol/L (3.5 - 5.3)

Urea 4.2 mmol/L (2.5 - 7.8)

Creatinine 80 umol/L (45-84)

estimated GFR 66 ml/min/1.73m^2

AKI no previous creatinine

CRP 6.5 mg/L (0.0-5.0)

Sodium

Short synacthen test 31.8.16

basal cortisol nmol/L 427

30 mins 763

6o mins 898

Sodium 140 mmol/L (133-146)

Potassium 4.2 mmol/L (3.5-5.3)

Urea 4.8 mmol/L (2.5-7.8)

Creatinine 70 umol/L (45-84)

estimated GFR (eGFR) 77 ml/min/1.73m^2

AKI (acute Kidney injury) No Warning

Older results :

Aug 2011

TSH 4.65

June 2015 prior to any medication being started.

At baseline, TSH 4.29

FT4 14.9, Thyroid Antibodies Peroxidase ABS + 112.7

Sept 2015 TSH 3.0

Nov 2015 TSH 2.11

15 Replies

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  • Mcooper,

    Thyroid results in August indicated you needed very high FT4 to maintain good FT3. I think your endo reduced Levothyroxine dose too much when he reduced from 100mcg to 50mcg and only added in 5mcg T3. 5mcg T3 is equivalent to 15mcg Levothyroxine. It will have taken up to a couple of weeks for your FT4 level to drop and at first the 5mcg T3 will have been helpful but as your FT4 dropped you will have been converting less T4 to T3.

    I think your thyroid results will show that you either need Levothyroxine or T3 dose increased. If you have enough T3 you could try increasing dose to 2 x 5mcg daily. Alternatively raise Levothyroxine dose to 75mcg but it will take 7-8 days for it to be absorbed before it starts working.

    ____________________________________________________________________________________________________

    I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

  • Thanks Clutter for taking the time to reply, you have explained it really well and I no longer think I am going mad. I have enough T3 so I could try increasing this to taking 10mcg per day, would it be ok to take it in one dose with my levo first thing in the morning.me. I have been taking 50mcg levo with 5 mcg t3 on one day, and 75 mcg levo with 5 mcg t3 the next. :)

  • Mcooper,

    Yes, it's fine to take 10mcg in one dose with Levothyroxine. I still think Levothyroxine dose was reduced too much but you shouldn't increase both at the same time.

    When you have your next thyroid blood test arrange it early in the morning when TSH is highest and fast (water only) as TSH drops after eating and drinking. Take Levothyroxine and T3 dose after your blood draw.

    _______________________________________________________________________________

    I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

  • Thank you for getting back to me, I may increase the levo to 75mcg each day first and if no better after the 7-8 days it takes to be absorbed, then try adding the extra 5 mcg in.

  • Hi Clutter, I hope you don't mind me contacting you. I posted the note below on the main board yesterday and go a reply from another member. I just wanted to ask if you would mind giving your opinion as you have helped me a few months ago with some excellent advice. Thank you in advance for your time, moira

    Good Morning Everyone,

    Am after some advice please. At the end of September I was allowed a 3 month trial of T3 to be added to T4 as I wasn't feeling any better on T4 alone. Prior to starting on T3, I was alternating between 75mcg T4 one day, and 100 the next. The endo suggested dropping to 50mcg t4 one day and 75mcg the next and adding in 5mcg T3 daily, which I started on 24 Sept. Initially this did help and I felt a lot better, but after 2-3 weeks I felt rotten again with the aches and pains and excruciating headaches returning. On advice I received here, from 12 Oct I upped this to 75mcg T4 each day and 5mcg T3. I felt better on this but felt there was still room for improvement. I had further bloods done 12 Nov as follows.

    Results 12 Nov 16 ( older results listed further below)

    FT4 18.92 pmol/L (normal range 12-22)

    FT3 5.3 pmol/L (normal range 3.1-6.8)

    TSH 0.0112 mU/L (normal range 0.27 - 4.2)

    When I saw the endo end of November he seemed irritated that I had upped the levo each day to 75mcg, as opposed to the alternate 50 - 75 dosage he suggested.

    I said that although I was feeling much better , I still have low energy but more than I had before adding the T3.I felt there was room for improvement and asked if I could increase the T3. He said he wouldn't prescribe an increase of t3 as he didn't want me going over active. I was wanting to either reduce t4 or add further t3 to the mix. Either way I just feel the improvement felt on a small amount of t3 suggests this is helping me more than the t4 did.

    He agreed a further 3 month trial of 5mcg daily to be added to 75mcg T4 and follow up bloods and apt with him in 3 months.

    For the last 3 weeks the aches , pains and fatigue have started to return and I just feel I am not firing on all cylinders.

    Could you advise if my results would suggest a small increase of T3 would be worth trying.

    Thank you :)

    Older Results

    31/8/2016

    FT4 26.47 pmol/L (normal range 12-22)

    Ft3 5.9 pmol/L (normal range 3.1 - 6.8)

    TSH 0.027 mU/L (normal range 0.27 - 4.2

    May 2016 Vitamin D =77 ( range 50-250)

    11 July 2016 Short Synacthen Test

    The basal level needs to be above 100, 30 min sample needs to be above 500 nmol/l with an increment of at least 200 nmol/1

    Basal 468

    30 Mins 815

    60 mins 905

    LH 11.4 U/L

    follicular 2.4 - 12.6

    Ovulation 14.0 - 95.6

    Luteal 1.0-11.4

    Post Men 26 - 135

    FSH 21.1 U/L

    follicular 3.5 - 12.5

    ovulation 4.7 - 21.5

    Luteal 1.7 - 7.7

    Post Men 26 - 135

    B12 723* ng/L (199-663)

    Folate (serum) 13.9 ug/L (4.6-18.7)

    Pathology

    WBC 4.9 X 10^9/l (4.0-10.0)

    RBC 4.56 X 10^12/l (3.8-4.8)

    HAEMOGLOBIN 154* g/l (120-150)

    HCT 0.44 ratio (0.36 - 0.46)

    MCV 97.0 fl (83 - 101)

    MCH 33.8* pg (27.0 - 32.0)

    MCHC 347* g/L (315-345)

    RDW 12.5 (11.0-14.0)

    Platelets 222 X10^9/L (150-410)

    Differential

    Neutrophils (abs) 2.5 10^9/L (2.0-7.0)

    Lymphocytes (abs) 1.5 10^9/L (1.0-3.0)

    Monocytes (abs) 0.5 10^9/L (0.2 - 1.0)

    Eosinophils (abs) 0.30 10^9/L (0.02 - 0.50)

    Basophils (abs) 0.11* 10^9/L (0.02 - 0.10)

    Erythrocyte sedimentation rate 13 mm/HR (9-19)

    Biochemistry

    Sodium 141 mmol/L (133-146)

    Potassium 4.0 mmol/L (3.5 - 5.3)

    Urea 4.2 mmol/L (2.5 - 7.8)

    Creatinine 80 umol/L (45-84)

    estimated GFR 66 ml/min/1.73m^2

    AKI no previous creatinine

    CRP 6.5 mg/L (0.0-5.0)

    Sodium

    Short synacthen test 31.8.16

    basal cortisol nmol/L 427

    30 mins 763

    6o mins 898

    Sodium 140 mmol/L (133-146)

    Potassium 4.2 mmol/L (3.5-5.3)

    Urea 4.8 mmol/L (2.5-7.8)

    Creatinine 70 umol/L (45-84)

    estimated GFR (eGFR) 77 ml/min/1.73m^2

    AKI (acute Kidney injury) No Warning

    Older results :

    Aug 2011

    TSH 4.65

    June 2015 prior to any medication being started.

    At baseline, TSH 4.29

    FT4 14.9, Thyroid Antibodies Peroxidase ABS + 112.7

    Sept 2015 TSH 3.0

    Nov 2015 TSH 2.11

  • Mcooper,

    I can't see that another 5mcg T3 added to your current dose and Levothyroxine would over medicate you. FT3 5.3 is good but there is scope to increase dose to raise FT3 as long as it remains <6.8. Did you feel better in Aug when FT3 was 5.9?

  • Hi Clutter, thanks for taking the time to reply, yes I did feel better when the FT3 was 5.9. I don't understand why it has changed to 5.3. I have spare T3 so will go ahead and try adding the additional 5mcg to my 75mcg levo a day to see if this helps. As the endo has only agreed for me to be on 5mcg per day t3 with 75 mcg levo, I will reduce my t3 dosage prior to my next blood tests. Could you tell me how long the T3 stays in my system so that I know how long before the blood tests I need to reduce the dosage. I don't want to rock the boat with him in case he stops prescribing the t3 for me thank you so much for your help regards moira

  • mcooper,

    You will make yourself unwell if you raise and reduce T3 dose to finesse a blood test. I don't know how long you would have to stop taking the extra 5mcg before the blood test. Why not just take the extra and if symptoms improve tell your endo and ask him to increase dose to 10mcg.

  • Thanks for the reply Clutter, when he initially put me on the trial t3 dose he asked me to reduce t4 from the alternating daily doses of 100mcg one day, 75 mcg the next to 50 mcg daily with 5 mcg t3. After a few weeks I felt rotten and asked for advice in here and then went with , 75 mcg t4 daily plus 5mcg t3. he seemed perplexed that I did that and at that point I said there was room for improvement and would like to to add more t3 and he said no as he didn't want me going overactive, so I feel he will be cross that I have gone and done it myself. I don't want him refusing me further t3 prescriptions if that makes sense. Thanks again moira

  • mcooper,

    You won't become over medicated on another 5mcg T3. How you feel is more important than making your endo cross.

  • I suppose what I also mean is that I want to be taking the 10mcg with his approval and am worried that if my latest bloods don't reflect figures that would support this raise then I will have a problem.

  • mcooper,

    As you won't become over medicated on 10mcg he shouldn't have any problem approving the dose increase.

  • Thanks Clutter regards moira

  • You have high TPO antibodies - this means autoimmune thyroid - called Hashimoto's the most common cause in UK of being hypo.

    As you have Hashimoto's then you may find adopting 100% gluten free diet can help reduce symptoms, and lower antibodies too.

    Selenium supplements can also help reduce antibodies too.

    You do not need to have ANY obvious gut issues, to still have poor nutrient absorption (often due to low stomach acid ) or gluten intolerance

    Vitamin D is "in range" but probably too low, as most of us with Hashimoto's seem to do better with vit D supplements increasing level up to around 100.

    Have you had ferritin tested?

    hypothyroidmom.com/92-of-ha...

    vitamindcouncil.org/tag/aut...

    Best advice is to read as much as you can. Vitamin and minerals levels are very important, but standard NHS thinking, doesn't at the moment seem to recognise this. You will see, time and time again on here lots of information and advice about importance of good levels of B12, folate, ferritin and vitamin D, leaky gut and gluten connection to autoimmune Hashimoto's (& Grave's) too.

  • Thanks SlowDragon for the info above, just read your profile and can see you've really been through the mill. I have been tested for ferritin, God only knows what I have done with the results , but I was as told at the time it was in range. I was also tested for Coeliac and told that was negative ,but from reading your notes on your profile I can see that going gluten free really improved things for you . I must make a conscious effort to try. Thank you again for your time , regards moira

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