I haven't posted for a while, but I have been reading and learning thanks to all the info supplied after my post nearly 2yrs ago (when an endocrinologist discharged me back to the GP with no further action but pointing out that a T3 prescription may be available on private practice.)
I spent the following year trying to improve things for myself by going gluten-free, optimising vitamins, etc. but I didn't notice any improvement in my symptoms and just felt so miserable that I changed from Levo to self-medicate with Thyroid-S in January this year.
I did private blood tests before and after 5 months, by which time I had built the dose up to 2.5 grains a day based on how I felt, blood pressure, temperature and resting pulse readings. (All came up from low to normal levels).
07/12/2022 (125mcg Levo daily)
TSH 0.15 mu/L LOW (range 0.27 - 4.2 mU/L)
FT4 18.1 pmol/L (range 12 - 22 pmol/L)
FT3 3.8 pmol/L (range 3.1 - 6.8 pmol/L)
22/05/2023 (Thyroid-S 2.5 grains)
TSH <0.01 mu/L LOW (range 0.27 - 4.2 mU/L)
FT4 18.4 pmol/L (range 12 - 22 pmol/L)
FT3 8.1 pmol/L HIGH (range 3.1 - 6.8 pmol/L)
Because the FT3 reading was high, I dropped back to 2 grains a day.
I have not been in touch with my GP practice since the endo appointment in Dec 2021, but they recently requested routine blood tests.
(taken as recommended on here concerning dose, time, supplements, etc.)
My new GP now wants me to make an appointment to discuss these results:
Se non HDL cholesterol level 4.0 mmol/L 0.0 - 2.5 Abnormal
(for reference: 9 Jul 2021 Se non HDL cholesterol level 3.9 mmol/L 0.0 - 2.5 Abnormal - no action)
My red blood cell count was slightly over the range too.
No FT3 reading.
Everything else: serum lipids, glomerular filtration rates, liver function test, serum electrolytes, full blood count, 'normal'.
I know without a FT3 reading it's hard to draw any conclusions about how well I'm doing on this dose of Thyroid-S but I was surprised that my FT4 has dropped from 18.4 in May to 11.1 now. Does this mean I need to add some Levo into the mix?
Symptom wise I have been doing OK. I have enough energy for a daily walk, housework, etc. and my mood is certainly better. I'm not losing weight but not gaining either, so I count that as a win! I won't know about the dreaded feeling cold to the bone until the weather here cools down.
My blood pressure has dropped a bit but the only ongoing problematic symptom I have is fairly mild daily headaches. Sometimes they are more severe and wake me in the night. They are pretty much constant with the occasional migraine thrown in. Could the headaches be because the FT4 is low?
Any advice for the appointment with my new GP?
Is the high cholesterol something I should be treated for?
Should I tell him about the Thyroid-S or will this be held against me?
As always, all advice is very gratefully received!
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Pinkcosmo
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Hi SlowDragon. Thank you for replying so quickly! I always follow the testing protocol now I know the tips from here. I take BetterYou D3000 + K2 Oral Spray and Pure Encapsulations - Vitamin B-Complex Plus with Active Folate. I do have autoimmune thyroid disease and had high antibodies when first diagnosed but diet improvements seem to have helped when last tested. I only took Metformin for a year many years ago - couldn't get on with the digestive issues - I will update my profile now! My GP didn't go any further with B12 levels - he said everything was good from his blood test results so I hoped supplementing would be good enough. I've never had an ultrasound. GP did a coeliac blood test when first diagnosed - negative. I try to be gluten-free and am most of the time but really should try harder. I will order a full blood test with Vits now. I have signed the petition 👍🏻 Thank you!
Is the high cholesterol something I should be treated for?
Absolutely not. High cholesterol is a symptom, not a disease. As your FT4 dropped so dramatically, it's possible that your FT3 did, too. And low T3 is very often the cause of high cholesterol. It might have been better to drop your NDT by 1/4 grain, rather than half a grain.
But, even if it isn't in your case, statins can do more harm than good and are not recommended for hypos, anyway. And the raised cholesterol won't harm you. It does not cause heart attacks or strokes as doctors claim.
I felt amazing - so much energy. Then my hubby commented that I may be overmedicated when he came home and found me clearing out the roof space in the garage. I took the blood test and think it was a bit of a shock seeing the graph of the results. I have always believed being over-medicated was bad for the heart?
Do you have a time scale on this graph showing your T3 slightly over range - as mine would be similar around 10/12 hours from taking my Thyroid S.
Do you split your dose of Thyroid S ?
The ranges and guidelines were introduced alongside Big Pharma's launch of synthetic T3 and T4 thyroid medications - launched on the back of NDT - and who then went about claiming market share by fair means or foul.
With NDT you dose to the relief of symptoms - there are no specific blood tests - so I think you know where you feel better :
When optimally medicated on NDT you will likely have a low suppressed TSH and your T4 likely lower than when on synthetic but your T3 proportionately much higher :
No thyroid hormone replacement works well until the core strength vitamins and minerals are up and maintained at optimal levels - I now just run a yearly full thyroid panel and aim to maintain my ferritin at around 100 : folate around 20 : active B12 75 ++ ( serum B12 500++ ) and vitamin D at around 100:
My weight was the last bonus when taking NDT and after around a year found I had dropped around couple of sizes.
Thank you for your reply. I normally take it all first thing otherwise there is a good chance that I will forget but I spit it before the blood test as recommended here and took one grain about 12 hours before. I will go up to 2 1/4 and see how I feel. I've ordered a full blood test to check vitamins, etc and have made a note of your target levels for reference. Finger crossed for weight loss!
Ok then - yes - the weight loss was a bonus for me - as I'd lived with that issue since a child - I'm Graves post RAI thyroid ablation in 2005 and around 10 years after T4 monotherapy I thought I was dealing with dementia s I couldn't read and digest and back to my days at school dealing with undiagnosed dyslexia :
Now my brain is turned ' on ' for the most part of the day and am much improved and have advised my surgery of my actions and no longer receive a prescription for T4 or caught up in the yearly thyroid function test razzmatazz.
Well yes, I know - getting a T3 result through the NHS is near impossible even if you have a NHS prescription for T3 - and why so many of us have to resort to running our own private blood tests.
But how were you feeling - as with NDT it's all about symptom relief :
I know it must be strange saying such a ' thing ' when for years your symptoms have remained basically unresolved on T4 monotherapy - and you've pushed through likely accepting that that was just ' you ' and ' your lot ' !!
I linked you into another post -
basically when you run your private blood test - take the blood draw BEFORE you take your NDT for that day - that will give us the most realistic reading when dosing NDT once daily - so you will be leaving around a 24 hour window from last dose to blood draw.
Yes, thank you - I've just read that post. I will do that for my private test next week. I started NDT in January, probably feeling worse than I had for years - I just wanted to hibernate. Within weeks I felt dramatically different and by March friends noticed a change in my personality. I'm so pleased I took matters into my own hands - just regret not doing it years ago!
The Thyroid - S batches are slightly variable in strength, but given that you did not feel ill on the dose you were on, I would creep back up a bit. You would feel ill if you were overdosed.
Tell the new GP that an Endo said you needed extra T3 but he would not prescribe it, so you found a way to get that extra. You will probably find he knows nothing about NDT so just explain it is T4 and T3 in one pill. If he does know something about it and is against it, explain that it was used for over 60 years with no problems. It is your body and your risk, but tell him you would dread going back to T4 alone and will not do it.
Now can you nip round and clear out my attic for me?
Thank you for your reply. Great info for the GP. Don't think I can put him off until I've got the results of my private Blood tests so I'll go with what you have suggested. I'm going to try an increase to 2 1/4 grains and see how I go. Think I might tackle decorating next!
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