I have been on the T4/T3 combination therapy since 14 November 2019.
75 mcg T4 and 40 mcg T3 in 2 doses. I reduced T4 from 100 mcg/day to 75 mcg/day, a week before adding T3.
However, I started slowly and gently with 5 mcg T3 twice/day and increased every 2 weeks to 10, 15 and 20 mcg twice per day. That is the full 40 mcg T3 per day as prescribed by endo.
When I got my tests results and saw my T3 levels were at the top of the range and my TSH below range I decided to reduce my T3 from 40 mcg/day to 35 mcg/day, which I have done since Friday 6 March. Perhaps I should even reduce T3 to 30 mcg/day. My heart beats have increased to 79 beats/minute.
My results from 2 March 2020, since I have started the combination trial on 21/12/19:
SerumTSH: < 0.5 miu/L (0.3-5.5) Stated Below Range
FT4: 14.2 pmol/L (12.0 -22.0)
FT3: 6.8 pmol/L (3.1-6.8)nmol/L (26.1 - 110.0)
SHBG Sex hormone-binding globulin): 51 nmol/L (26.1-110)
Results before I started the combination therapy, dated 14/11/19, taking 100 mcg T4/day:
TSH : 0.58 miu/L (0.3-5.5)
FT4: 19.8 pmol/L (12.0-22.0)
FT3: 3.2 pmol/L (3.1-6.8)
So quite a change in FT4 and FT3. I understand it's normal for T4 to reduce and T3 to increase once T3 is added. However I am at the top of the range for T3.
Also I am worried the endo will say my TSH is below range, therefore dangerous to carry on with combined therapy. I have had a total thyroidectomy in 1980 so I understand it is ok to have a suppressed TSH when the thyroid gland has been removed BUT most endos start to panic when this happens. So not sure how to negotiate with the endo to carry on with the combination therapy.
I would appreciate your useful advice/opinion, please.
As I have also autoimmune diseases (RA being one of them) my CRP and ESR are rather high and some of my white blood cells levels are high.
CRP (Serum C reactive protein) : 15 mg/L (, 5.0) Above range
total white blood cells: 12.49 10*9/L (4.0 - 10.0) Above range
Neurtrophil count : 8.72 10*9/L (2-7) Above Range
lymphocyte count: 2.61 10*9/L (1-3)
Monocyte count: 1.01 10*9/L (0.2 -1.0) Above range
Red blood cells: 4.45 12*9/L (3.8 - 4.8)
haemoglobin concentration: 118g/L (120-150) Below range
mean cell volume: 82.9 fL (83-101) Below range
Mean cell heamoglobin level: 26.5 pg (27-32) Below range
Platelets : 417 10*9/L (150-400) Above range
Serum Folate: > 20 ug/L (3.89- 26.8)
Ferritin: 858 ug/L (30-400) Above range
Serum iron: 12 umol/L (8.8-27)
Serum Transferrin: 2.06 g/L (2-3.2)
Transferrin saturation index:26% (20-40).
Serum total 25-hydroxy Vit D: 68 nmol/L (50-144)
I understand that Ferritin levels can be higher when there is inflammation.
Have just received a call from the hospital to say y appointment is cancelled because of the risk of coronavirus. The endo will phone me tomorrow instead... However, my GP said she would not be allowed to prescribe T3 even if endo recommends I should carry on... It's going to be a challenge.
Looking forward to reading your advice and comments, as usual. With many thanks in anticipation.
I hope you're are keeping as well as possible during this most difficult and worrying time.
Best wishes.
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JGBH
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Maybe you didn't need to reduce Levo, or maybe a 12.5mcg reduction would have been enough.
New results on 75mcg Levo plus 40mcg T3:
TSH: < 0.5 miu/L (0.3-5.5) Stated Below Range
FT4: 14.2 pmol/L (12.0 -22.0)
FT3: 6.8 pmol/L (3.1-6.8)
FT4 may have gone too low (some of us on combination therapy can manage with it low, some of us need it higher in range).
FT3 at very top of range.
My opinion would be to lower T3 to 35mcg, followed by an increase in Levo of 12.5mcg. Retest 8 weeks after increasing Levo.
We have to tweak doses to find the balance of FT4 and FT3 which suits us as an individual. I need both FT4 and FT3 around 70%-ish through range, many people find a lower FT4 is fine for them.
Also I am worried the endo will say my TSH is below range, therefore dangerous to carry on with combined therapy.
You are taking T3, it lowers, even suppresses TSH. If your endo doesn't know this he should not be treating people with combination therapy.
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You need to discuss these with your doctor:
haemoglobin concentration: 118g/L (120-150) Below range
mean cell volume: 82.9 fL (83-101) Below range
Mean cell heamoglobin level: 26.5 pg (27-32) Below range
Ferritin: 858 ug/L (30-400) Above range
Serum iron: 12 umol/L (8.8-27)
Serum Transferrin: 2.06 g/L (2-3.2)
Transferrin saturation index:26% (20-40).
Just for information (doctor may not agree, in range is fine for them), optimal iron panel results are:
Serum iron: 55 to 70% of the range, higher end for men
Saturation: 35 to 45%, higher end for men
TIBC (total iron binding capacity) or Transferrin: Low in range indicates lack of capacity for additional iron, High in range indicates body's need for supplemental iron
Ferritin: Low level virtually always indicates need for iron supplementation; High level with low serum iron/low saturation indicates inflammation or infection; High level with high serum iron and low TIBC indicates excess iron; Over range with saturation above 45% suggests hemochromatosis
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Serum total 25-hydroxy Vit D: 68 nmol/L (50-144)
Are you supplementing? The Vit D Council recommends a level of 125nmol/L and the Vit D Society recommends a level of 100-150nmol/L
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However, my GP said she would not be allowed to prescribe T3 even if endo recommends I should carry on...
If your endo wants you to continue with T3, tell him what your GP has said, let them sort it out between them. Normally an endo initiates T3 and after the trial period the GP carries on with the prescription. Maybe your CCG doesn't allow GPs to prescribe, but if your endo says you should have it then he has to find a way for you to get it, whether he continues the prescription himself or instructs your GP to do it.
Thank you so much for your feedback and useful comments.
It’s a difficult situation because I will need to “negotiate “ with the endo by phone tomorrow. I find it easier face to face.
I am taking 35 mcg T3 at the moment so will increase my T4 as suggested and see what happens. I keep a diary.
Have just started taking VitD again last week.
As for discussing the other problems (iron, transferrin, etc.) my GP is useless... said I was ok with iron levels although I pointed out it was close to bottom of range but she didn’t change her mind! Tried to get another iron infusion but haematologist refused... yet last time I had one it did help me feeling stronger. It’s an ongoing battle to get help.
Good luck with your phone consultation, I agree that it's so much easier face to face. It's so easy for a doctor to talk over you with phone appointments, I've had it with my GP she just wouldn't allow me to get my point across.
Thank you. A bit apprehensive but will do my best.
It’s so frustrating when so many doctors simply try to ignore what the patients are saying and insist they know best when their knowledge is so restrictive.
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